Master of Irony

Gonna be hard

2012-02-12T00:04:00.003-05:00

Tuesday I go to turn in the stuff belonging to my company and retrieve the things belonging to me. I am dreading this. I know getting it over with is best, and Dr. Mind reminded me it would hurt a lot and cause unneeded hurting and anxiety if I wait as it won't get easier, but I don't want to. This is the most concrete thing I will have done in the whole quitting process (writing the resignation was something that I managed to do while protecting myself with layers of concrete and the distance of email) but this time I have to see people and talk to people and put my stuff in a bag and walk away from my cubicle. I probably have to cry in public and I'm sure I'll have to say some good-byes although I do not want to.

I just sorted through my bag that had forms and medical phone numbers and recourses and electrical stimulation pads and gadgets and the like. It was what held my computer and it went everywhere with me. When removed everything in the bag I found an enormous supply of feminine hygiene products that reminded me what I was going through last summer and I found a stack of business cards. I promptly burst into tears. I never had the cards before and really liked being able to give them out without having to write down a bunch of stuff. I also felt official and professional with them. And since I am not very likely to have a real job again and nobody will buy cards for someone working as sporadically as I will be when I get that far these will be the last I have, unless I make my own to feel better. Which would probably not be worthwhile.

Regardless this plus one ugly nightmare last night have me in a crummy mood and I am afraid that this will be continuing through the next few days until this is over with.

I am so tired of things hurting.

Avoiding the other extreme

2012-02-11T19:55:00.001-05:00

Today has not been as good as yesterday. I feel much more depressed, physically don't feel great, and am back to feeling overwhelmed. Normal, but not fun.

I am trying to find a way to use facebook to say good-bye to co-workers before everyone finds out I'm leaving based on rumors spread as I sob my way through exchanging their stuff for my own. The problem is that it is pretty hard to summarize "had to admit I'm too disabled to work now. Bye-bye career. it was a good run".

I keep thinking about the "it was a good run" thing. One thing that digging around in my archives from 2006-2007 has shown me is that once upon a time I was quite aware that this could and probably would happen and that I needed to prepare. In fact one post even references having checked how many more quarters I needed to work to get SSDI, and I often wrote of awareness that working was too hard to do for too much longer. I knew at the time there weren't many med options remaining and that probably I'd hit a point where there just were no more options.

I made a huge mistake. Understandable since it's a lot easier to believe in what you want to happen than in what you know is coming but want to avoid. When the meds really worked I quit thinking that bipolar was going to end my career. I ignored what I never wanted to think about: I may have been feeling good but there were no more meds out there if things changed than there were in 2007. That's not entirely true, there is one more option but it would require coming off Seroquel completely and is not being considered right now. I truly have no memory of the period of time in which I was ready for difficulties, but I do wish I'd maintained a happy medium between believing it was inevitable and thinking this wouldn't happen. The shock just doesn't help.

The shock is a strange creature. I am rarely not thinking of what is happening but every so often awareness that I completely neglected to see my disability as a threat to my plans for so long has now led me to have a lot of new questions and reactions. I'm 36 and can't work?!?! is a big one. Eventually I believe I'll be able to work some, but that's not yet. I don't know the person who I am now. Another thing I never considered, that I could become ill in entirely new ways. And at the moment the new ways are scary. I also don't know how to sort out symptoms from who the new person is because I don't know how to tell that. It's a very odd experience, one I wouldn't recommend.

This is what Dr. Mind and I need to work on, desperately. I have no idea what happens now or who I am supposed to be. I want to sleep. That's everyone's goal right now but it is not seeming to happen. Nights are when I am faced with realities I don't know how to handle, things I try to tell myself need to be addressed only with Dr. Mind but which I can't control.

I just wished that I'd spent the last few years at least occasionally considering that I may be doing wonderfully at that moment but that there was a possibility of difficulties in the future that could be just as bad as I had known a few years ago.

The Change

2012-02-10T18:35:00.003-05:00

Two weeks ago, just a few days after I found out that I was not getting longterm disability (which was denied, surprise, surprise) I went back to see Dr. Mind, who had seen the initial effects first hand as I had gotten the letter, cried all the way to his office and held it together sort of in the waiting room, then fell apart completely when he looked at me and asked if I'd had a bad drive. Now I am honestly feeling a little better and I know it shows. Writing is easier because I can usually complete my thought without too much effort. The 2nd time I saw him that week he noted that I looked "terrified".

I'm not now. I am deeply concerned about how this will go if I am denied on round 1. If you are denied on 1 you are nearly certain to be denied on round 2. Then it takes a year or 2 to get a court date to appeal on round 3. There is no way to know what will happen; it depends a great deal on the reviewer who currently will have requested my medical records.

Dr. Brain told me that she thinks I have the situation that lends itself to approval. But the truth is that there is no ideal situation. What I do know is that the more I read I can't find someone specifically say that having a disability for a long time, with many years of documentation of ups and downs and work difficulties is better than being diagnosed with something that might be even more debilitating but there isn't a test of time to show this. Dr. Brain told me that she has put additional details in my records for years in case this happened, to show how hard I've tried. Looking back into the blog history I found where she'd told me this years ago as well and I had forgotten. In addition both Dr. Body and the pulmonologist should have documentation of their recommendations that work was making things worse. I know that Dr. Mind also had years of proof but his specific notes will not be evaluated since they are psychotherapy. What will come out of his records will be treatment plans, insurance paperwork, and what he writes on his form explaining why I can't work from his perspective.

I'm reading that a lot of denials happen because the reviewer feels there is some job the person could do. I hope that I am well covered here. I told Dr. Mind yesterday that I'd thought about trying to get a few hours of work just to have a tiny bit of money. But when I thought about it there aren't low-income jobs that I can do because I can't handle noise and around here most jobs that might work with the current cognitive problems and that would have less stress in terms of no decision making involve loud beeping. And there is certainly proof that I cannot work as an OT.

But even when I'm handling it better, waiting is so hard. And you probably should expect to hear this frequently for quite some time because it truly is all I can think of sometimes.

Beautiful

2012-02-10T01:34:00.001-05:00

As I've said many times, I don't do music. So sometimes a song has been out a long time before I hear it. This one is only about 18 months old. It is by Mercy Me, who have several really great songs in my extremely limited musical interest list.

Today I was a bit early for my appointment with Dr. Mind and we were meeting at an odd time so nobody else was in the waiting room. I was able to peacefully listen to the music when it caught my attention. And what caught my attention was this:

I will be listening to this song a lot now.

Prayers

2012-02-10T00:27:00.000-05:00

Last week I asked a friend to pray that I could be at peace with either dealing with the suicidal things at home or that I could be at peace going back to the hospital. In response he prayed that I be at peace with not hurting myself. And very soon I was. It's not all gone, I think about it daily but unlike last week I have not done anything worrisome or really even thought anything too awful. That is a wonderful break. In fact tonight at my class I even smiled and sort of joked as I talked about the reason I'm knitting is because it turns out if you have a lot of knowledge about meds and you have chosen one to harm yourself with they tend to not let you have meds. It was funnier to me because I know about the entire locked box and the procedure Dr. Mind and I go through every week to get my meds to me safely. But the best part? A week ago both Dr. Mind and I thought I may have to be hospitalized. Today was the first time he has forgotten to ask me if I'd been thinking bad things since I was in the hospital and he started the new routine on the phone. I was gone before I realized that I was good enough to make him forget.

I am feeling better. There's a long, long way to go, but I feel more like myself than I have in so long I can't even name it. I still cry every day but today I laughed, more than once. It actually sounds strange to hear myself laugh. It wasn't manic laugh either. I feel somewhat manic but this was just laughing. It was also a few times with Dr. Mind when I was talking about unimportant things and was relaxed and talked about something completely non-urgent.

I also was finally able to bring up my greatest fear today: what happens now? I have no idea. I know we hope that I get to feel like myself again. But I don't know if that's even realistic. I know that eventually we back off on all the intense support. Someday we go back to once a week visits to Dr. Mind and I will control my meds again. Someday I won't cry every day and I really hope that SOON I quit crying without noticing. Dr. Mind tells me this is a way I'm protecting myself but I am constantly wondering if I'm crying in public, again, without noticing.

In the last 6 weeks or so there have been 2 times in Dr. Mind's office that have really stuck in my head as crucial points in what I was dealing with. One of them was maybe 3 weeks ago when my sobbing finally got out the words to tell him that I was so ashamed of myself for the suicidal stuff, that I knew I had promised him one thing ever and that was to tell him if I felt that way and I always had, but then I got to a danger point and I hadn't. At this point every drop of fear and horror at my own thinking and plotting and avoiding the truth came out and I sobbed and sobbed. He let me cry and I have no idea what he looked like because I couldn't see, but for a long time I cried and cried and he kept telling me over and over "oh no, no,no. Don't think that. No, no, that's not how it is." After a long while he told me that I didn't ever need to worry about bringing it up, that he would ask and I had to only say yes or no. This is, of course, inaccurate, because if I say yes then I have a whole bunch more questions to answer, but it is a lot easier and has then made it easier for me to bring up when there was a big episode that needed prioritized. Someday we need to talk about suicide out of the context of my feeling like it, but we may have to do that sooner because I need to talk about it before my class gets to that topic. I have no idea if I wrote about the day in the hospital that I said "I'm suicidal" aloud. The day before I had said a few times I didn't want to live, and then ultimately written out the suicide thing for the nurse. It was the 23rd and for a bit there were only 3 of us on the unit. We had an art therapy group and for much of it only 2 of us were there. We started talking and the words finally, finally came out, how I would rather die than face the end of my career. I talked a LOT in that group and so did the other woman, so much that it went on for something like 3 hours. After that I said it a lot while I was in the hospital and it got easier to say and to live with. But with Dr. Mind and Dr. Brain it was a whole other ballpark because I knew that I handled it badly with both of them. Apparently not being able to talk about being suicidal is forgivable, but I am still not comfortable.

The other time, which had a lot to do with the shift now, was last week. We'd been through did I need to be in the hospital, what he was going to use as the criteria for pushing it (which I didn't absorb and keep forgetting to go back to), and the ongoing "what has happened to my life and i don't want this" that made up a lot of my life since the sudden understanding I'd be making enormous changes that were more permanent than I'd let myself accept. (And thank God I as I just now learned my longterm disability through work was denied and it's much better to have my claim in week 2 than for it to be started tonight. One thing I have learned is that if you come to a realization there is even a SLIGHT chance you may be heading for SSDI or SSI apply immediately for benefits. It's easier to undo a claim than to wait for approval. If you're in supreme denial as I was this doesn't work, but I could have easily applied in November following the terrible job I did trying to go back.) Anyway, after I'd cried for over an hour off and on he decided to pray with me. We seem to do that when something is huge, and we prayed for a very long time, maybe 10 or 15 minutes? I don't know what all he said, but I do know that he was emotional as well.

Those 2 prayers were accompanied by many more that I don't know about specifically, and others that were carefully written here in my comments. And I have been getting a tiny bit better since. I think today is the first time that I thought I may feel good again. I still need to ask if I will ever feel like me again, and what they feel will be a reasonable prognosis at this time, but that's for my next session. Actually he said we'd do that in small pieces every session for a while so I'm guess I'm not going to enjoy some of the answer. But really nothing can be as bad as losing so much of my identity with my career. Two huge losses at the same time have to be worse than learning I may not feel great again until there is a chance for a new medication.

So, for tonight, a little happiness from a freezing cold (I think because I'm emotionally drained; class was intense tonight) Jen.

Not needed

2012-02-08T20:17:00.001-05:00

For the past few weeks it has been really weird as I've been treated for JUST depression. JUST depression is not something I see very often and it has feel odd.

Well, it's over. Mania has started and now I'm back to my typical mixed episode. The net result is that I am EXHAUSTED (the med change last night didn't get me to sleep sooner but did make me groggy until about 7 pm) and yet having a hard time sitting still. I have probably done more around the house in the last hour than I have in 2 or 3 months in the last 25 minutes. Granted, 25 minutes isn't very long and I didn't do anything fancy. But I did make recyclables take up less space and bagged them, I washed a few dishes, I cleaned off the stovetop since something had spilled without my knowledge. Last night in a similar burst of MUST DO SOMETHING NOW at the unfortunate hour of about 2:30 AM I straightened up my bedroom. It's not done but it's neater than it has been in a very long time. And truly at this point I'm happy with just "nothing growing where it shouldn't".

One thing that gets hard with these periods is that I wind up feeling a combination of exhaustion from the depression and "THIS WILL NOT DO, CLEAN IT UP, FIX IT NOW" from the mania. And of course listening to the mania just makes me more tired and listening to the depression makes the mania unbearable. Hopefully this is just because of the med change and won't last long.

I scheduled a time next week to return company property and get my stuff. That's likely to send me back to the down side again. But I need to get it over with as I dread it and know it's going to be a very hard time and I just need to get past it. I honestly think it was easier to quit than to do this, probably because that task tends to be pretty hard when you are leaving a job to go to another. This time the books and things that have always traveled with me from job to job will move to places in my home. Hard to imagine.

Anyway, I'm going to try to take meds a little early and hope I can go to the city a little early tomorrow so I can get a script filled and pick up milk and the like before I see Dr. Mind so that we can lock up the dangerous med instead of my having it locked in the car (not good for it) until next week.

Easier day

2012-02-07T22:20:00.002-05:00

I had a rough night with my cat and I taking turns waking. But once I got going I had a better day, one of the few I haven't thought of suicide in more than fleeting words in a very long time. And so far I think I've only cried once. I had dinner at my mom's, then we skyped with my niece for a while. She's counting to 5, recognizing letters, and filling in words to songs. She also kept rolling her eyes, which apparently she only does with my mom and I. She was so, so excited to see me kept yelling "Jen!Jen!Aunt Jen!" while rolling her eyes so my sister asked if I roll my eyes at her. OF COURSE. There is a goofy little song about a frog I've been singing her all her life about at about 11 months she latched on to it and kept signing frog whenever she saw me. Part of the song involves rolling my eyes and sticking out my tongue and she thinks it is HILARIOUs. Now she's figured out eye-rolling. She is just beginning drinking from an open cup. This involves my sister giving her a tiny bit, she sips, then she turns the cup totally upside down, hands it to my sister and say"pour?". She's absolutely amazing. I am watching her one day next week and am hoping to build up to once a week as my sleep corrects. I also laughed at what parents do for kids. Several years ago a stray cat showed up at my sister's. My brother-in-law fed it. She's a sweet cat but my sister just didn't want one then, especially not a non-spayed pregnant one. The cat LOVES my niece. I took maybe 100 pictures one day in the fall and in a vast majority when blown up the cat is somewhere in the background. Well, the cat lives in the house now...
It was so fun to just watch her play.

I even was good and took a walk. Drs. Brain and Mind talked yesterday and while I don't really know about what it seems that there are going to be some things I am told and expected to do and exercising out of my house is one of them. So I parked just inside the town, walked up to pay my water bill and then took a convoluted route back to the car. It's tricky to get a long walk in a small town. Not that long matter, I think a mile is good and I'm sure I got that. Don't tell but both of my last 2 walks have actually be really stress-relieving. It's just hard when I'm not sleeping and feel so depressed. It seems unfair that the treatment for depression is to be active when that's so far from what feels right.

The only time I cried today was sending an email asking if I can come in next week to return the stuff belonging to my company and get my own things. Dr. Brain is reminding me I really need to do this and get it over with and I sob at the mention/thought because it is so final. But when it is over it is over and that's a good thing. Actually there will be one more thing, I want to write a thank-you to everyone I worked with to go in the "good work" box for recognition. We'll see if the day I asked about works; I want to try to do it when my mom can drive because I don't know I'll be in good shape to drive afterward. I can't explain how hard it will be to get my things out of my desk for the last time. I've so rarely even had a desk, much less a cubicle and while I'm fairly sure that others have been using it by this point I also assume my things are there where I left them.

Anyway, one round of tears is an easy day lately. And I need to get set up to maybe fall asleep since tonight I actually remembered to make the med adjustment I needed to make last night.

Well, that's it...see you in New Jersey

2012-02-06T23:23:00.000-05:00

SSDI is a federal program managed by the states. In theory use of the same criteria should mean consistent approval/rejection rates for the first application. It doesn't. Ohio is, of course, one of the harder states at 70% denial. New Jersey, on the other hand, is only 50%. As I understand it these rates are probably affected by people desperate for anything they can get applying when the economy is so very bad here, but some of it, I am sure, has to do with Ohio's jobless rate/poverty rate means that they are restricting people from overtaxing a very tight system. My doctors have wanted me to move away from pollution. I realize New Jersey isn't that, but surely it's worth it to get the benefits?

Interesting day. Dr. Brain and Dr. Mind talked on the phone about me for quite a while. I don't know what they discussed really aside from how to make me less depressed. So now I am being pushed to resist the depression more. It also appeared that they decided that he'll keep monitoring the suicidal stuff and reminding me how and when to get help and that if I do this I should stay home.

Mostly though I am now 100% sure everyone is on board with the stopping working thing.

another step complete

2012-02-06T14:18:00.001-05:00

I made it through the phone thing only crying a few times. I was quite frustrated to learn that my mother loaning me money counts as income and so I won't be getting SSI. She said it wouldn't come through for a while (or it is a supplement to SSDI?) or something so I guess that's ok. This is just a tough process. I was just hoping for the extra money. She had me add diagnoses that are less relevant saying everything should be there. She had me fill in a few blanks from the application that I didn't realize were there. And she did something that Dr. Brain said was a good thing--she put the start of disability date as the first day I couldn't work, back in August. That means I'll be eligible for Medicare in 08/2013. The sooner the better. I'm trying to find a policy that is more affordable than COBRA and it's not going well.

Anyway, the disability stuff is way out of my hands now. And there it will remain for a long time.

If you do everything but one thing right, what then?

2012-02-06T00:29:00.002-05:00

I have been doing reading I was too stunned to do last week or the week before about SSDI applications. I've done pretty much everything right, meaning that in most ways yes or no is up to the reviewer. Dr. Brain, who has done this with a lot of psych patients since she tends to specialize in difficult cases, thinks I'll get through on round one. In Ohio only 30% of people do and that's with some diagnoses fairly automatically qualifying and my understanding is that mental health can be harder to get through. But I have a very messed up work history for many years and I also have tons of medical records substantiating the claim.

I'm scared I've messed up though. Initially Dr. Mind had encouraged me to not resign until my long-term claim was denied. The problem was that when I found out that my 401k was trapped until I quit and I realized that I was likely to be released from my contract this week and I just could.not.be.fired with this being the last job. And when I thought a lot about quitting it was the right thing to do because I very much need to apply for low-income programs. Now though I'm afraid that one decision could somehow be a negative on my chart. I don't know how as I can show that I wasn't going to qualify and that I still would have had to file for SSDI at that time. If I'm very fortunate I'll get a denial from before I quit. But I really hope I didn't just mess this up. If for no other reason (and there are many) if I am approved in early summer my mom should be able to retire mid-year.

Anyway, if you think of me about 10:30 EST Monday think good thoughts or prayers that I'm handling my phone call ok.

Taking life for granted

2012-02-05T21:40:00.003-05:00

The last 2 weeks (I can't believe it has been so long) have taught me a great deal about how easy it is to get so comfortable in our lives. OTs make a great deal of money. I've never actually made what I should've because I've missed work with disability or not worked full time. But I've always had a very good income for a single person.

It is startling to face life 100% differently than I expected 2 weeks ago. At that point I was ready for an income decline and change to COBRA. But I knew that I could afford to make payments for counseling and paying off medical bills and just keeping things as they were. I never thought much about how much is spent without consideration. I have had a home phone line for years that I didn't need because I thought I had to to have DSL. I was very wrong. I had intended to put some bills from my surgery on a credit program through the hospital. Now I'm applying for forgiveness and praying that they'll accept special circumstances since I do still have insurance. With this the trick is proving I don't have income. My taxes look like I do. I did work more than half the year. It says bank statements are an option; mine show the short term disability I've been living on which expired and loan money from my mom.

I try to only do 1-2 of these daily because they are hard. I am learning that there are things that are easier to swallow than others. I am ok with food stamps and when I can get it SSI. I paid into those programs and happily will use them. What is dreadfully hard for me is asking for forgiveness of something I normally would pay, like medical bills. I simply can't afford the co-pays that I have left. I also am never going to have the money to pay my student loans again. There are programs for someone who becomes disabled. But asking for forgiveness is so hard; I feel I am cheating the system. I know that's not true and that I did not seek out disability but it is so hard anyway.

This is where I have to spend a lot of time reminding myself that I worked as hard as I could for many years and that I didn't ask for this. I wouldn't judge someone else for doing this; it's just hard to do it yourself. One thing I found out from Dr. Brain yesterday is that the 2 years I need to be disabled to finally get Medicare will start at a day of disability that hopefully will go clear back to August. My back-pay will only go to the last few weeks since I did have income through disability but hopefully I will be able to get Medicare in August of 2013 which would greatly help. (If not it will be February of 2014 which isn't that far off, except that COBRA is ridiculously expensive and leaves these huge co-pays I can't do anything about.)

And I must take meds and try to sleep since I have that SSDI interview in the morning.

That makes sense

2012-02-05T21:12:00.003-05:00

I just tried to apply for a program that offers assistance with the expensive meds I take. One problem: I can't apply. Why? Because it refuses to believe my income is $0.00. But it is.......

Ugh.

Finally

2012-02-05T19:00:00.000-05:00

Without trying the new drug recommendations I finally got a good bit of sleep. I'm still exhausted and hope to sleep as well tonight although I have my SSDI interview in the morning. Fortunately it's a phone thing so I don't even have to get dressed if I don't want to. I don't know why I finally slept. I know there was a lot of relief that I am not being immediately hospitalized. I'm being honest so they are doing this knowing that there have been some scary times lately. Which is good. I was thinking about how much I don't want to be there the other night and realized that instead of coming up with the reasons one typically uses when thinking of a psych stay I have very different reasons, reasons that are because I have spent too much time there. Things like I don't want to go knowing that I will eat about 50% of what is on the menu and otherwise will be a lot of cottage cheese and fruit. I eat a lot of both at home but not as meals. Or not wanting to deal with insomnia and the night nurse with all these specific reasons. Or that I don't overly like any of the snacks and I drink so much water that they rapidly run out of the tiny 8 oz. bottles supplied. Or the social worker disliking me, probably more so after I complained last time (only to my doctor but Dr. Brain is mighty when annoyed). I don't want to have to wait and wait to be able to email. I hate that I am not allowed my nook because if I have the nook I have a chance to adjust what I am reading to what I can follow, whereas books are heavy to lug along and I may or may not be able to follow the plot. On and on, but the reasons merely show that I have spent way too much time there lately. I know I'm walking a thin line with the hospital and that I may well end up there but with some sleep it feels less likely. Somehow it also helps to know that both doctors are willing to give me some leeway on this. They could make me go. If my house weren't already made into a safe haven where I'd have to work to get into danger I'm sure that I'd be there, but everyone seems to currently agree that it's very hard to impossible for me to do anything impulsively and so I have bought some time to recover a bit from the shock.

I'm trying to get taxes done today. I am not going to get done because I'm too tired to be sure I'm including everything. I'm in the medical part which is where most of my deductions come from and where it is important to not miss anything. Hopefully tomorrow they'll get done totally as the sooner I have them the sooner I can get the refund and be closer to the SSI check that I can't get now because of the pending refund, 401k that I can't get into until the company has processed my resignation, and a few savings bonds with not much value. Plus the refund will make a big difference with my credit balance.

I am so, so sleepy again! I am fine with bedtime being 8, but 7 is just too early. We'll see who wins, when I finally sleep after not for months like this it is often very hard to stay awake.

Titles don't matter

2012-02-04T18:37:00.001-05:00

I went to see Dr. Brain today. Highlights are:

she gave me a tissue to hold and a box of them because she said it would be hard (and undoubtedly Dr. Mind had warned her of my uncontrollable tears lately) but I didn't cry. I guess there is one benefit to having been through this a lot
she did not hospitalize me. Basically the same as Dr. Mind: I'm at risk, the things that have happened are concerning but I've done the wrong thing each time and know that if it worsens I need to get to the hospital.
She has a list of ideas to help with sleep. All are creative but hopefully something will work and I'll sleep all night which would certainly help the depression. Attempt one starts tonight.
She thinks my SSDI will be accepted the first time because there is so much documentation and I have tried so hard. She admitted that she has documented more than necessary for years in case this happened. She is very positive usually but I don't think she'd say she thinks it is likely that I'll get through this quickly if she didn't really think it.
One of the most beneficial things I can think of is that several years ago I was assessed by vocational rehabilitation. At the end the counselor told me his main recommendation was SSDI. I was not happy about this and both people treating me were not happy as they both felt I could and should keep working. Anyway, that documentation will be seen by the reviewer, assuming he wrote it down, but better yet is that we easily were able to find this in Dr. Brain's notes. So I've worked 4 more years than the people who are supposed to do everything to keep you working thought I could.
She pointed out that it took cancer to make her slow down and that it is hard but it's something I should really have done a while ago.

I'm very tired so that's it for now. I actually left feeling slightly less panicky. I wish that we could mess with all my meds at once to fix everything but after what happened with anesthesia/Mirena/chicken pox shot all at once I am on one change at a time unless I'm inpatient and even then they went slower. But at least we can probably get me sleeping.

More later, as usual

The end of my career and one long, long day

2012-02-02T22:41:00.001-05:00

As you probably know I have known for a while that it will be a very long time before I am able to work again, if that happens. My employers were holding my job for me, which let me have benefits with less cost than COBRA and it kept the clock from starting for COBRA. My leave was up next week and I was hoping they'd just say goodbye then.

But it got messy. While I'm waiting for SSDI (disability) I am eligible for SSI (low income). To qualify for that I have to liquidate my few assets (house and care are not counted). I had a tiny 401k and have a few savings bonds that aren't mature yet. Those both must go. Except the 401k was set up so that it was nearly impossible to get into. The only emergency way that I, someone with no income and medical bills everywhere, could get out was to have unpaid medical bills of the amount needed or higher depending on what you read. I certainly have that but not that in the format they want. And going around trying to deal with proving that when I know that I can't work anyway and feeling like that is a huge secret I'm carrying around (yet my bosses surely knew) was getting harder. So after talking to Dr. Mind for a bit I decided to use the resignation letter I wrote this morning when I first really knew it was time. My hesitation was because technically they can come after me for the cost of benefits, but first I don't have it and second they've been really nice about things to now and I don't think that my quitting after 6 months of trying to get well really will make much splash in the huge company.

I had a long, intense time with Dr. Mind. There were 2 times this week that I had to purposefully back away from something dangerous because it's very hard to want to live while you systematically tear your life apart. The first time was at home and involved meds and I was able to talk myself out of it, lock them up and close the door rapidly. The 2nd was more disturbing; at my mom's I found a utility knife and really struggled not to pocket it. A lot of the feelings from a month ago are back as I keep facing more new and painful changes in my life: feelings that this is hopeless and I'm tired of fighting and I want access to ways out. The end result was that I am very close to the hospital again (and after 45 minutes of this talking I realized this is true and agreed that I am very close and that I will discuss it further with Dr. Brain this weekend). I asked where the line was between having bad feelings and being sent to the hospital. And in the midst of crying I have no idea what the answer is aside from I am close to it. The word despair was mentioned repeatedly by Dr. Mind. He also talked to me about the severity of my depression and asked if this is the worst it has ever been. It's not yet but it is close. It's so weird to be so depressed and not have cycling, but pretty much I am just so low that it's hard to remember I even have highs.

We talked a great deal more about how much it hurts to have so much change and so much painful stuff and that my sleep is not just out of whack because of anxiety but because of depression as well. So I agreed to go finish off my crying on this walking trail thing and I did that.

Praying was so hard because I could hear how much he is hurting for me. One thing that can be really hard for me is that numerous people invested a lot to help me be the person who succeeded. I don't think I was the only one who thought we'd won. Dr. Mind does say that he has been aware for several months that the change that has made this so hard and has caused the end of my career was big and that he has been concerned about my ability to work for some months. But so many times I made it back to ok when it wasn't clear that I could. It is hard for everyone that this has happened. When Dr. Mind's voice broke a few times I knew that he's hurting for me. I honestly can't imagine his job right now; I know that I am so fragile and hurting so much and walking such a dangerous line that I would imagine it's pretty hard to have seen the joy and success of the good period turn into this. He cares and I can't imagine that it's easy to see someone you care about hurting as much as I have been, especially with today's decisions followed by the matter of fact announcement that my desire to hurt myself is gaining strength.

And after all that I think hospitalization is so near that I'll be packed when I see Dr.Brain. I stopped for a couple tylenol before my class and had a really hard time wanting to gather collections of meds to bring home. Having gotten my home into a pretty safe place that wouldn't be wise and I did again leave with nothing I shouldn't have, but if I'm going to fight a serious thought every day or two that's not good at all. Dr. Brain is typically slower to think supervision is needed than Dr. Mind, but after last time she was pretty serious about preventing repeats. And (I did honestly tell Dr. Mind this too when asked) I am not sure I don't belong in the hospital. I think if things don't change I'm within days of needing it. I just don't want to go back there AGAIN. I used to know how Dr. Brain would react but that was before the great lying about how I feel being dangerous thing, and even though I am telling on myself there's a lot of hurting in there.

For now I have cried (including in my class) myself into a pounding headache, haven't really eaten supper and am kind of tired. Maybe I cried enough to sleep. We'll see.

prayers appreciated

2012-02-02T17:23:00.001-05:00

I am at the library and will write more when I get home but I have class tonight and so I am facing several hours of not knowing what is happening. I quit my job today. I am struggling and afraid (because I am hoping they don't go after benefits reimbursement which they can technically do but I HAD to be not working for them (explain later). Class is going to be tough beause my Dr. Mind appointment left plenty to think about beyond this. And I am really tired. I was with Dr. Mind just under 90 minutes and cried through almost all of that, and then I cried more when we were done.

I have to go so I can buy one of those little packets of tylenol since I can't have bottles of it and my head is hurting. Surprise there.:)

I wish this did not have to be so hard.

Out of my hands

2012-02-01T19:25:00.001-05:00

My entire application for SSDI has been submitted. I have an interview over the phone Monday to be sure all information is complete. I may be contacted for further information or to see their doctor, but pretty much now I wait about 4 months.

It's all in God's hands now. I've provided every drop of information I can think of. I hope it was enough.

Bad night whiny day

2012-02-01T18:17:00.001-05:00

Last night I slept about 30 minutes and then was up until 4:30. Yesterday some of the harder stuff in all I'm trying to do hit a little harder and so the emotional response was enough to cause a rough night. I did find some missing papers, so I guess it wasn't totally a lost cause, but I am so tired. I actually skipped going to see my niece so that I could rest. I almost never do that.

I hate it when I am too tired to make progress. Today's grand total of activity was to make one phone call. Hopefully I can work a little more on my nearing completion form for SSDI but I am just tired and sad today. My brain decided I needed a swift reminder of how hard this is just when I thought I was getting good at making this less raw. Turns out not so much. Dr. Mind told me this would happen. It's just hard. Whenever really negative thoughts come I start worrying that I'll be sent back to the hospital. And while the hospital does good things in general there are some really hard parts and I have spent too much time there lately anyway. I know my situation is different and that needing to be there again is not beyond the realm of possibility but I keep remembering this man who was there with me in the fall. They were working very hard with him on finding out what made him prefer to be in the hospital because he kept coming back. This last time was weird enough as I knew where everything was and how everything works as well as anyone could because I've spent so much time there now. I don't want to be the one they are asking why I am so comfortable there and what I'm trying to avoid by being there. I realize that what I am going through buys me some time to feel horrible, but it's hard that I know I can't hide anything from the doctors right now and that if someone says hospital I will be going and will not have room to argue. I am diligently telling the truth when asked, and Dr. Mind promised that I have answer only yes/no unless more is needed, but I need to find out what is acceptable versus what is a signal that I am in trouble. I know he won't be specific but I think it's a lot easier to tell the whole truth when I know that the whole thing is telling, not "I'm telling and then what" as it feels now. I had a few scary moments the last few days when I wanted to make dangerous choices. I didn't and even though I know this is pretty well expected at this point it is still really hard to know how to process it. Especially because I can't get past the fear that someone will get angry with me. Even if both times I have to tell about I did the right thing it just feels like someone should be upset. Dr. Mind and I had talked about this some just before my life blew up and we need to go back.

First though I need sleep. It's killing me that it is only 6:00. I'd love to get to bed by 10, but that is such a dream right now. I am so, so tired of getting to sleep at 3 or 4 AM. It's good that I can sleep after that but not so good that it's become every night. I am hoping Dr. Brain does not tell me I need to use the sleeping pills. I hate how they make me feel and my history is that they only work for short periods. I'm hoping for more seroquel but may still be in the danger zone for too much antipsychotic and a repeat of akasthesia. I believe that I have passed that point but really I know little.

I hope Dr. Brain has gotten in touch with Dr. Mind. That's become an issue in that he's tried and tried to get in contact with her and she's not answered. Which is bad on a lot of levels, including that part of my safety system means that he needs to be able to reach her quickly. This is between them, but it still is annoying.

Anyway, enough of this complaining. I'm just not having a very good day today. It's hard when someone happens and I have to wait 2 days or so to talk to Dr. Mind about it.

I wish he weren't always right

2012-01-31T20:35:00.000-05:00

Dr. Mind told me yesterday that I should be aware that just because I felt a little less crushed yesterday than I had been that I was not done feeling bad. This is hard enough to go through and then the part where it was thrown at me with no warning and the part where I wasn't doing all that fabulous to begin with all add up to this is going to be hard.

Like I said last night parts are hard. Some things are ok in that I do them and they are hard but they are done. And having them done feels really good.

Today was actually pretty good. It was gorgeous outside and I went to my mom's and we took the dogs for a walk and had supper. Non-frozen cooked food is an incredible treat right now. And as I got tired the more symptoms I had to fight. Which is frustrating. Right now because I'm on such a tight watch for safety issues it is even harder because every time a thought of self-harm goes through my head I know that I'm going to be talking about it. So for now we're up to 2 things to talk about Thursday, which is so frustrating to know in advance, even though I also know I have to talk about it so I don't go back to the hospital. The hard thing is that for so long I had myself so firmly convinced that I couldn't tell anyone or I'd have to go to the hospital and would be stopped that it's really hard to turn that around into it's ok to tell, hiding gets you sent to the hospital. I just wish there were a way and somehow time to make me not dread this part. I think I need to talk to Dr. Mind about this, but with so much happening I don't know if he's going to feel it's a good time to take things on more that when I have to do.

I did just impress myself. In grad school I saw one psychiatrist for a couple years and then he died. So I saw this woman psychiatrist about once. She suggested I was bipolar, I left, we attempted a med change and she changed her mind midstream, and then I graduated. I'm trying to give every single possible doctor to give as much information as possible. I managed to come up with her name without having to desperately search. No clue how that stuck in my head but it did. Chances are good those records are destroyed but I'm trying to show that I have been being treated for this for many years. I'm going back 15 years since I know further back the records are definitely gone.

Otherwise if you get interested in my progress with all of this in the right sidebar there is a new page keeping track of what is done.

Have a good evening.

Unearned income

2012-01-31T00:21:00.001-05:00

One of the really hard things about going through this is that I have to accept financial help that I never thought I'd need. I have written about how hard it is to face that Dr. Mind is going to be losing even more money on me during a time that his own financial situation is plenty rough. Some parts seem harder than others; applying for assistance for heating and later air conditioning (due to medical condition) doesn't bug me much. Food stamps were a little more challenging to think about but I desperately need that; the amount is likely to be enough to feed me with very minimal cost to myself especially if I figure out coupons and go back to my grad school skills at knowing what stuff is safe to get from the ultra-cheap stores and what isn't. I just finished applying for those and at the same time will have applied for some stuff that I am not eligible for until I use up a little bit of money. So I'll probably have to re-do that form later. And that form is not all that well designed, but it also gave me greater pause that I expected the food stamp application to do. Why? Because it asked what unearned income you have or have applied for. This turns out to be disability through a job, social security disability, social security income (low income supplement) itself, etc. And that struck me as odd. Because I did earn disability through work. They aren't going to pay me, but I did earn it. And I've paid in the system for many years to be eligible for SSDI (social security disability).

One thing I managed to think to do while things were tough last week (or just before I found out how tough they were going to get?) was to open 2 credit card accounts using the income I technically have until I lose my job. This was done to hopefully transfer my high balance high interest card to others as well as using tax $ to pay it down. I haven't received a response yet but when I got into my mortgage webpage I had a new credit card line of credit. So there's one balance transfer I can do soon. I hope the other card is also approved.

And that is the hardest part. I worked so incredibly hard to bring my credit up over the past few years. And I succeeded, making me able to open new cards and shift things around. Dr. Mind and I talked today about my struggle with my car. For the job I had an SUV was needed. I was nervous about the extra cost but I worked really hard and got the best possible deal. I kept having to remind myself that I was making very, very good money and that I'd done well for a long time. But buying a car was a bit of a gamble. And now I have little choice but to keep it because it's a long way from being paid down enough for a trade to be the least bit effective; I'd just wind up with a cheaper car but leftover debt from this one added to the cost.

Because of the times I was off work I knew to never take income for granted. But I also had huge expenses and so I never saved much. Turns out that makes it easier to qualify for assistance but it does make me a bit sad. I think that the hardest part overall of accepting that I need government assistance to manage is that I know how much I was making and it does not seem like one could possibly go from the salary I managed to negotiate before starting this job and then one day get a letter that says "haha, no income for you", even though technically I'm still employed. The shock is finally clearing and the fact that I feel relatively comfortable with these applications (sometimes there is not a good answer) has helped. Last week on Monday when I saw Dr. Mind I had only known for 45 minutes what was happening and I had sobbed the entire way to see him. When he came for me I was still crying and shaking and pale. He kept looking at me funny and asked if something happened on the drive up. And then I cried for 3 or 4 days. On Thursday he looked at me again and after asking how I was noted that I looked terrified.

I'm not terrified now. I'm doing everything I can to save myself. I may not succeed, especially if my initial claim is denied like so many. I still am completely stunned and very sad that this has to happen the hard way. I also know that this possibly makes it even more likely I'm not going to work more than the small amount SSDI allows. Dr. Mind seemed surprised that I said that; I know he has thought this for a while and apparently he didn't know that I knew. Not sure how that got confused.

Time to start the several hours of settling down to sleep. Hopefully my brain will let it go tonight and not force me to get up to make notes about the disability application. That would be a really big blessing.

Learning

2012-01-29T23:55:00.003-05:00

As I watch my finances reach freak out level and I continue to shift things around to make things work I am discovering how much I took for granted. I just eliminated $11/month with subscriptions I basically had been too lazy to delete. I took the time to ask and found out I don't need a phone line to have DSL, saving me about $60/month (I may have to add some cell minutes so maybe only $40 but we'll see). I can't do much about utilities until I have gotten rid of a few financial things that prevent me from qualifying for aid programs. I think I will qualify in a month or two. But already I've cut about $100 and really won't suffer for any of it. There are plenty of things that are going to be very hard and in a way the things I have no way to cut back and save money are the hardest to cope with. Dr. Mind is going to see me at a very reduced rate. This is very hard because I don't know what to tell them I can manage and I feel really bad accepting this but was told that I am well known there (it's true, therapists use my name and I don't know them; comes from being the longest term client and there for all but 2 years the place has existed) and that this is how they can help and I need to let them worry about that part. Except then they asked what I can afford and I do not know what to say. Not only do I really have no idea the amounts I'm sure of are so tiny to be pointless. He brought up the other day that cutting back would save me money. I am not remotely comfortable doing that and yet I am worried that suggestion came to help them not lose so much money while being kind to me. The last I knew from Dr. Brain she wanted the twice weekly sessions to be very long term. And practically they are important; I pretty much need someone to be asking me if I am in danger because I don't know I could volunteer that yet. And the only way to get into my large quantities of meds is to have Dr. Mind give me my key. That means if I make a mistake grabbing pills it's important to get in there soon, and it is also important to be able to put away new bottles of pills. So giving up that support would be pretty bad. Yet the twice a week thing is unusual, at least where I go. Everyone seems ok with it because it works for me and time has shown this, but when they are getting into essentially donated time it's harder.

Some of the harder things are still coming, like telling the hospital I can't pay them $1500, or going to find out about food stamps, etc. I am happy to have the programs available and know that this is what they are in place for, but it's strange to be filling out so many forms and trying to explain my income last year has no bearing on now. I discovered while looking at some social security stuff that one way it's easy to tell how sick I've been is that I never made the kind of money I should have. The early years when I didn't have trouble working (at least less of it) I was a new grad with a lower income. Then the rest of it is broken by periods of disability, unpaid leaves twice each for a few weeks, and short periods of unemployment. Plus there were a few years I didn't work full-time.

On the other hand years of meticulous paperwork that is both dictated by and scrutinized by the government have given me a hand with this application process. About a year and a half ago someone from corporate reviewed my documentation saying that the only problem was that I was TOO specific and therefore wrote extra. That is serving me well now.

I don't know how to describe how I"m feeling right now. There is a way that I feel a little better. I think deciding with my mom and for now we're working on my staying in my house until I'm ready to change that helped. I don't love it here and if I were in a position to just decide to move I would, but I do not want to move when I would have to buy a house that would not be likely to be as nice as this. This place has problems but I have spent vast amounts of money on roofing, windows, and doors and it is snug. I could never afford to repeat that and the difference those 3 things made in my home is so great I do not want to leave and not be able to fix it. There are other things but mostly I had decided to move in a sequence. This would not be following that and the one thing I promised myself was that I would buy a home that did not need top to bottom remodeling as this one has. I can't afford that and my decision making is different now.

While I am getting used to all of this I also feel like such a failure. I know that I tried as hard as I could and that I did more than would easily be expected of me. I know that 11 years (almost) is a pretty amazing run when I really couldn't hold a job or work very long without time off for illness. I know that I worked on medications that make work extremely hard. But I always thought if this happened I'd have more warning. And while I suppose I could have seen back in the fall that I wasn't bouncing back I kept thinking that until Brenda the ovary issue got so bad that I couldn't stand it I had been doing fine and would resume that.

I have always tended to have a pretty good memory about patients. It is because I was often supervising patients in 5 or 6 places when I was a new grad and nearly always at least 2 after that. So I easily could have assistants asking me about 40 or more patients. It was easier to memorize them. But one thing that I've noticed is that my mind may have been preparing for this ending more than I knew. The last weeks that I worked are so clear in my mind and I remember the last patients (the last month or two of them) in great detail. While other patients from home health certainly stand out none stand out like the last group. It's almost like I knew those were my final patients. I just wish I'd been able to say good-bye. One person in particular I'd worked with for months, had gone to her house worried that I couldn't reach her and discovered her having a stroke, and she was to be done at my next visit, which never happened. Another person I had just immediately clicked with. He will be the last treatment I ever did. I was so anxious to see him through his upcoming transplant though and I know he had it but nothing else. The last day I worked I saw him, had the next person stand me up, evaluated someone I had previously treated and knew wouldn't need treatment, evaluated another person who didn't need or want more than one therapy and started to see a final person who couldn't be seen because hospice had started with them the night before. It's weird to look back and think that was the final day because it was atypical and nothing about it gave any indication that I wouldn't soon be doing the same thing.

Anyway I should go. I think I have an appointment with Dr. Mind tomorrow but it's not on my appointment card. I am nearly positive they said Monday though. So I have a call in and if I don't have an appointment I'm hoping they can get me in. Which means I should try to sleep.

One thing I miss desperately is taking meds and getting sleepy. I hope that this will change soon.

So nobody worries

2012-01-28T23:08:00.001-05:00

I may not be posting as much for the next few days. I'm trying to fill out an involved medical history form for disability as well as completing my taxes. I can only do so long and I get frustrated, so the blog may be written (plus it's how I keep my promise to be journaling to Dr. Mind) but it may not be much for a few more days. Not sure what else my disability form involves but this seems to be a major form. I also have a week to print out a bunch of supplemental information for them and gather copies of many things. The taxes are more or less done except that I have to take all the massive amounts of medical information and divide them into categories. It is not an easy or fun process. At least I have learned over the years how to do it more efficiently.

So anyway, don't worry. The worst thing happening here is that when I was getting ready to go to sleep last night I rolled over, yanking on my weighted blanket, lost my balance and crashed to my stomach, punching myself hard in the nose. So I have a puffy nose now. It's a great look. And not at all a stupid way to get hurt.:)

Really though, I am feeling a little more focused right now and less upset. I got a lot of sleep today which helps. I'm sure the shock and anger and tears will return but being rested makes this so much easier.

Sometimes it is the dumbest stuff that is hardest. I need to see my scrubs to consignment or on ebay. I will keep a few since eventually I'm allowed to work a little bit on social security. But for now there is no point on hanging on to so many and yet saying goodbye is hard. I guess it's like the stethoscope, a reminder of the huge, unwanted changes.

Cute story

2012-01-28T00:47:00.001-05:00

I had an awesome day with my niece, something so busy I finally just slept 4 hours and hopefully will be back to sleep pretty soon. We had so much fun and she was perfectly behaved. Once at the library she tried to run off and just as I said her name she fell. This woman looked at me like "great, now she'll cry". Anne just looked up and said "fell" and moved on. She's finally old enough that I could say on the way into the mall "if you want to walk you have to hold my hand. If you don't we'll have to get the stroller". I never had to repeat that. We also went on her first train ride. It's pretty neat, the train drives around the mall. She loved it and even better they gave her a stamped ticket. She held onto that thing until finally it blocked what she wanted to do and then later I gave it back and she kept saying "ticket, ticket" and half the time that was in awe. I'd gotten a drink and some french fries for a few minutes snack after the play area was too full of kids too much older and rougher than she is. The parents tried but 3 year olds would just go around or over her while she climbed. So we just left. My sister called while we were having our snack and was on her way to meet us. Anne became insistent that Mommy was coming and would sit right THERE. So I called and mommy came and took her seat which thrilled Anne.

The best though is this message from facebook: Anne's last words before sleep tonight were "Fun! Fun!" I think she had a good day.

Me too and I needed it so, so badly. Things really feel less crummy finally. And I fell asleep about 8:30 and hopefully will get back to sleep pretty soon. That sleep felt so good.

Wonder how this will go over?

2012-01-26T20:29:00.001-05:00

I was up until 5 AM this morning because I am so overwhelmed and feeling I need to do this and this and this and this. When I saw Dr. Mind I tried to get out of the class I'm taking because I don't feel up to it and would get more out of it next time it is run. He basically said I could either reduce visits with him and go or I could continue the multiple visits and go. I am in no way ready to not see him as much. So I'm going. But then I took my car for an oil change. It's a long story but someone did massive damage to the thing that lets the oil drain. I knew this and had requested the part yesterday but they sent the wrong on. My car has been making a noise that turns out to mean "you're running out of oil idiot". I did check that and it was fine a few weeks ago but I very nearly ruined my engine. So then they had to call around for the part and drove to the next city to get it and then that was wrong so they had to drive back to the other city and back again (with traffic issues), and then it took 2 men trying as hard as they could to get the broken thing out. They thought they were going to have to replace the entire oil pan. So my quick oil change turned into 3.5 hours and so I missed class because of car problems. That will go over well with Dr. Mind I'm sure.

He said I look terrified. Sounds about right. Things are moving along and that's good. I have a meeting with social security on 2/6 which is apparently the next step of the application. I have other appointments to make but they are waiting for Monday. We are both waiting to hear from Dr. Brain. She tried to call him after I left the other day but he was with the next person. I see her next weekend and I think Dr. Mind is going to see if she can call him at home (which is not something he ever does, he is trying soooo hard to help) during that visit so we can all know what everyone else is saying/thinking. Which is likely to mean they talk, I cry. For someone who was terrified of crying days ago I cry a lot now. Apparently this is stage one in the really fun grieving process that I'm probably going to go through. And now that my depression is back to severe I'm on an even higher level of monitoring. It's so much fun.

I got a whole new perspective today that helps immensely. I said something about being concerned that social security will say that since I worked for 11 years I should be able to do so. Dr. Mind pointed out that I have worked and repeatedly needed long periods of time off work and I have not held down jobs for very long at all. And the reality is that in 11 years I have been off more than a year on disability over time and I've had 7 different jobs, and twice I was fired. So not such a great work history.

And now I have to find something to eat (everything sounds unappetizing except grapefruit so that's the choice I guess) and work hard on getting to sleep since I have to leave about 8 to babysit and lately I've barely been asleep at 8.

Also, I'm sorry because I'm fairly sure this is just plain whiny. I'm tired and cold and crying and it's not working well.

Stolen from Facebook

2012-01-26T00:39:00.003-05:00

I really needed to see this today. About 75% of the first column has crossed my mind today. Too many way too hard decisions. At the moment I think I am going to be packing my life into storage and moving in with my mom. We can convert her upstairs to an area for me so I'll have a living room and bedroom and another area. That lets this house be put in order for sale quickly and hopefully it will sell fast. Then she'll buy a home that I'll pay the mortgage on. There are huge downsides to this emotionally but ultimately it eliminates so much money. I have some checking to do on the effect on my eligibility for some benefits if I am not living alone since it could in theory raise bills by having another income in the household. But her income isn't mine so I have to check on that. It's tricky because I have a tax refund coming. That refund will pretty much be my last money until things are better. And yet it means delaying some things until that money has disappeared in the credit card void. I don't know. It is just a lot and it is happening so fast.

I also must say that a blog is an amazing invention. I had to fill out some incredibly detailed medical forms from the time when I had whooping cough and was seeing the dr. constantly and was on and off many, many meds in a few weeks. I also had to give dates of visits. The blog provided all of that nicely.

Anyway, I forgot about clothes that need dried and then I need to start figuring out how I'm going to sleep. I've asked for more meds because sleep is torture but so far I haven't heard anything from Dr. Brain. Dr. Mind called me today to give me some information and I think to check on me and he said he hadn't heard either. That part is really weird because if he calls and says "This is Dr. Mind (as opposed to First Name Mind) and I am urgently calling about a mutual patient, she'll know who" that's typically their code for Jen has a big problem. And her email isn't set on not available. So beats me. Perhaps she figures it can all wait until I see her next week.

As I said before, don't worry if you don't hear from me. Two big days.

Don't wanna talk about it

2012-01-25T19:32:00.000-05:00

I'm not going to write about the stressful stuff today. I just can't. I haven't even eaten much today because I'm so upset. I have a request in for more meds.

I am mostly posting to say if you've had trouble commenting this is a known issue without a solution yet. If you use Google Chrome it won't happen. I changed my comment format to a new window and that should help too.

I may be quiet the next few days. Please don't worry. Tomorrow is errands, Dr. Mind, oil change, kill time, class, home late. Friday is up early and down to where my sister works, babysitting, supper with my mom. Since I'm not sleeping well at all I figure this will wear me out pretty thoroughly. I hope.

I will be back soon and I'll talk about "it" soon too. Today I have just done too much of it.

Well then

2012-01-25T02:21:00.002-05:00

Obviously this wasn't the best day of my life. I've done several things like contact disability attorneys, look into some ways to help my budget, and painfully talked to my mother. She was actually wonderful. We're going to see how some things work out, but I think she's going to work another year and support me. I am confused as to whether she was aware of the amount needed to keep things going and how long the wait is. I believe she said she can manage the whole thing until I have income again. I hate that she won't retire but she said that she honestly has felt quite uneasy about doing so and that one more year working is not going to kill her. It still makes me very sad, but without her help I'm facing bankruptcy. If she isn't able to help as much as I think she did then I'll file for bankruptcy just with credit cards. I applied for 2 more cards last night while I still have an income (technically) and hope that I can spread some debt out that way. We talked about selling my house cheap and getting out but I won't be able to buy another for years if ever and giving up the earned equity at this point in my life doesn't seem wise. We talked about my mother possibly buying the house and renting to me, or she will assume part ownership of the house. I don't really want to stay here but I also think that it is better to refinance and stay put. More than anything I do not want to wind up renting. I absolutely hated it before, I was constantly stressed about damage and exceeding pet limits and noise from everyone around me and now it would be even a bigger issue with all the things that cause asthma. I truly think this is not the time to move. My mom isn't going to agree to that but the bottom line comes down to I am not well enough to maintain the house in viewing shape. The other option would be living with my mom until the house sold with my things in storage but that does not sound good at all.

I also did some reading on the social security website and I think I am going to do the first filing without a lawyer. 75% of claims are denied initially and at that point I'll seek help but the first stage is pretty easy and honestly would require me to do the hardest parts anyway. I do have a few things to clarify with social security tomorrow but if I am reading correctly I can do this first part myself and that makes me feel better. If I would get through in the first round that would save me 25% of the back-pay they give and if it's for the easy part that I can do myself I'd rather keep that.

I can't seem to settle down, but it has been 2 tough days and I'm just glad that I feel a little control. I hate that my mother is doing this but am so thankful she can. I'm doing everything I can to cut costs, like cutting my cell service to the minimum, hopefully my telephone/dsl as well (I wish I didn't have to have a landline but DSL is my only real internet choice). I am hoping to find a way to lower my car insurance a bit without running 50 credit checks and then finding out lower auto means insane homeowners with a lot of these places.

Anyway, I just yawned. I hope that means sleep is coming pretty soon. It is a bit hard to just relax at the moment.

We'll start with the rainbow

2012-01-23T19:07:00.002-05:00

As I've said very often when something hard happens there is a rainbow. Today there was a gorgeous, all the way across the sky, brightly colored rainbow for 5 miles or so of my drive.

That rainbow came immediately after I was notified that because of a hidden pre-existing clause on long-term disability I am unlikely to get those benefits. I cannot work at this time. For what I read it is quite unlikely. Right now it looks like I will need to file for SSDI, may well face bankruptcy, and today I got my last check. I do have a very large tax return coming and that will get me through a few months. For the most part I am facing some really big problems.

Dr. Mind called Dr. Brain while I was there; if they've connected it has been since I left. I have cried until my eyes feel like popping out. Somehow I need to go make some supper. I didn't eat lunch because the horror of that letter made me forget that I needed to stop.

That rainbow needs to come through for me. I truly thought this was all addressed. I feel sick with horror.

Sleeping. Nobody is home

2012-01-22T21:14:00.002-05:00

I haven't been extremely chatty the last few days and doubt I will be for several more, assuming things continue. I am falling asleep a little bit (not enough to really matter except in my own mind where 2:30 is MUCH better than 3, and 1:30 is an all out miracle) earlier and aside from getting up periodically for fluids or cat food I am sleeping 12 or once more hours. It would be ideal if I were sleeping at bedtime, not the middle of the night. But after so long without sleeping much at all this feels so good. I desperately needed a few nights (and days) of deep sleep. It makes coping with everything so much easier. So I'll be continuing to sleep as much as I can whenever I can, until a doctor tells me this is bad.

One thought for the day: Ending my career early is obviously painful. It's THE THING I most hoped wouldn't happen because of illness. And adjusting to it, as you've noticed, has been really hard. What finally occurred to me is that my mother is retiring in a few more months. And she's had 2 full careers, achieved a great deal, and loved what she has done in both careers. Yet even with 45 years of the 2 careers and a tough year or two at the ending she is sad to see it come to an end. And she will still be doing some professional work. On the other hand my ending is abrupt and not what I want or planned for. Nobody will celebrate the end of my career. For me it is not a transition as much as a huge ending (which will of course transition to something else although I have no clue what). I think I really wanted that 65-70 year old retirement thing. Not a party, but just the thing where you are celebrating the end of many years of hard work. Even though I know that my illness made me work much harder in 11 years than many do in 40 this is still sad and is another thing that isn't the way it is "supposed to be". Oh well. Other things will come along. I truly hope to babysit my niece once a week once I feel a little better. And I am for sure watching her this Friday!! My sister actually specifically asked me. I decided to meet them at my sister's work and trade cars with her and spend the day in the town where my sister works instead of driving another hour to her house. It's going to make nap tougher but is easier on me. I haven't been able to babysit since late October/early November.

And with that I must go as I've been washing blankets for hours and either the washer got mad again or it's finally ready to swap out.

The language of suicide

2012-01-21T21:03:00.001-05:00

One thing I've learned that I didn't want to know in the last month is that there is a lot of terminology related to suicide, most of which I didn't know. I know "suicidal ideation" (thinking about it); "plan" (a step that means it's really serious); "intent" (willingness/ability to carry out that plan". I was taught before this that there are active suicidal thoughts "I want to take every pill in my house" and passive thoughts "I wish my lithium toxicity had killed me". In the hospital they replaced the passive with the term death wishes which I hate and refuse to use unless forced. Yesterday I learned a new one. Dr. Mind about about "suicidal gestures" and I had to ask what that was. It means doing things in prepartion to a plan to die, like getting bills paid, setting up the scenario which is chosen, making a will, writing a note, etc. And then he said or something like putting a gun to your head like a trial run. I think I looked at him like "yeah right" which is when he pointedly added "or keeping pills where you can stare at them and plan". Um, yeah. No longer feeling smug that this wasn't me and point taken; what I was doing was plenty dangerous. I suppose the time will come when we have to talk about that even more. I do not want to go through life at an even higher risk than I was before, although my risk moved up because of this.

When I was in OT school I remember being taught in general how to react if a patient said they wanted to die. You were to ask if they had a plan, if they had access to whatever danger they were discussing, and you were to get as many details as possible from them, and then you got them help, immediately. You documented in as much detail as humanely possible.

When I worked in psych I had to do this several times. The worst then would be that people would ask you to keep what they were telling you a secret before they'd say anything and I'd have to explain that while I would keep anything confidential that I could if they told me they were suicidal or wanted to hurt someone else or if they told me that another human was in danger I could not keep the secret. I don't remember most of them being too reluctant; I do remember there being a lot of paperwork and in general not a lot happened because for the most part our patients were in a pretty safe environment. They just were on increased monitoring and the psychiatrist would be notified along with the patient's doctor. Sometimes meds were given, sometimes not.

A few years ago I had a patient who was very depressed, cognitively intact, and who had been a very successful community member and suddenly found himself to be old and sick. He struggled hugely with this. This happened to be someone that I got to be close to. One day he laid out a detailed plan to kill himself upon leaving the nursing home. He was very serious about it. I got the usual information and told the nurse. Who actually laughed and told me he certainly wouldn't be doing that in the nursing home. Ok, but what about home? It took me several days to get them to listen and get a psychiatrist involved. By all rights he should have been sent to gero-psych the day he told me that. After that day I had to argue because the family had gotten rid of the guns in the home so he was safe. I had to point out to someone you can't make a house totally safe unless you are an expert, what with meds, cleaners, drain openers, razor blades (even after scouring my own home for those 3.5 weeks ago I found more yesterday), etc. They kept insisting he'd be fine until the psychiatrist saw him in a few weeks. I don't think anyone ever thought about what it feels like to be suicidal. Having recently been quite suicidal yet being kept from harmful things in the hospital I can say for certain that while it is good to know you are safe because you are being protected it is also frustrating because you know that a few lies and you're home and able to do whatever you want. Even if you decide in the hospital it isn't what you want as I did it is frustrating and scary to go home and suddenly have to be responsible for yourself again. As Dr. Mind told me on the first day home he can hold on to every dangerous thing I own and that doesn't mean that I am really safe. People who are suicidal need to be helped with coping skills rather than just given false security than only lasts while in some facility.

I don't think it is possible to understand the desire to die that is so strong you are willing to make it happen yourself. Even though I've had suicidal periods off and on over the years I didn't completely understand that until the last month. I think that's why I find all the terminology to be weird. Terminology just helps keep in distant and at least in my experience it is vital to look closely at the feelings, the causes, and the solutions. Even when the solution is very basic, as mine currently is: lots of therapy, lots of monitoring, limited access to unsafe items, increased meds. Big words do not change any of this. In fact, for me, the most vital thing in staying safe is being held accountable for telling through frequently repeated questions. I can't say that would have helped much 6 weeks ago as I may have at least tried to lie if asked directly, but I also probably would not get away with my lies. The lying I did get away with was not so direct.

One of the sessions of my class is on suicide. I am hoping to read that chapter ahead quickly and I may ask to be excused from it. I am not sure I'm ready for that. We'll see. If nothing else I know lots of phrases now that should help!

Will I publish this? Let's see

2012-01-20T23:37:00.001-05:00

Obviously you won't know if I don't. It's just weird to go into a post and know what I'm going to say but not if I'm going to share it.

With the sleep last night and lots of quite today and a very calm weekend anticipated since we're getting snow and ice on top of snow from yesterday I actually feel a little more peaceful than I have in so long. But the weirdest thing? I mainly feel this way because it really was good to go through things for the long-term disability thing Dr. Mind has to fill out and admit to what I can't do. He was worried that if I even got my hands on this form that my feelings would be hurt. I told him I know that I'm pretty limited and am not going to be upset by having that confirmed. There is so much and I judge myself for not being able to do simple things. But when I listened to myself yesterday it suddenly made sense that if I can't do A I also can't do B. My example at the time was laundry. It often takes me multiple washings to get a load done because I start them, forget them, they stink, I re-wash once or twice and even when they finally are dry I usually forget to retrieve them until I wonder why I have no socks to be found. I didn't really explain all this to Dr. Mind.

Usually it is better to focus on positive (ie, yay, I slept). But a realistic picture is good too. So I thought I'd list things and yes or no them. This is how the insurance form is. I am, however, going to make some places that the answer is no because I can't consistently do it but I am doing it some and you will see (if I let you read this) that I need some sort-ofs to make up for a zillion no's.

So, here goes:

Laundry sort of
Vaccuming No
Picking up sort of
Mailing things no
Dishes No (bare minimums and don't use many)
Cooking No
Mopping No
Changing sheets Sort of (needs to be more frequent)
Showering Sort of (better than pre-hospital but still not daily)
Taking Night meds Yes
Taking morning meds Sort of (forget a lot)
Cat feeding Yes
Litter boxes Sort of (forget until they smell)
Going to the bank sort of (tend to hold checks as long as possible)
Knitting yes
Reading sort of (children's books)
Grocery Shopping sort of (always forget things, difficulty with decisions makes it take forever)
Car care No
Getting Dressed sort of (tend to hang out in pajamas unless I have to do otherwise)
Hair care sort of (see above)
Oral hygiene sort of (forget sometimes but better than other things)
Med management sort of (hard to remember to place orders)
Paying bills sort of (tend to be right at deadlines; car payment late partly because I forgot how my online banking works)
Working No
Making appointments No
Phone calls No
Going to appointments Yes
Wormie care No. Neglect is showing in my population. Probably will have to start over.

Undoubtedly there are more. But I am strangely ok with this huge list of things I can't do (more or less). Because if I see this and know that well me couldn't stand this stuff it is easier to know I am not well. Probably makes no sense to anyone but me.

I SLEPT!!!

2012-01-20T16:22:00.002-05:00

I SLEPT, I SLEPT, I SLEPT!

And by sleeping I mean asleep at 1:30, awakened by the cat a lot of times and fell straight back to sleep, woke in the morning and realized I was tired so slept some more, was awake for a while this afternoon and instead of strictly adhereing to "no afternoon naps" I passed back out for another hour.

So all it takes is driving home in a snowstorm for hours after a great discussion of how sick I am and paying half my annual income (not really) for a medication. I can repeat that easily, right?

I actually feel more relaxed that I can remember feeling in weeks? Months? A year?

Thank God

The sad, green stethoscope

2012-01-19T21:24:00.002-05:00

My time with Dr. Mind today was hard in a new way. He has paperwork for long-term disability, a lot of it. He wanted to go through some things with me and then he's going to contact Dr. Brain so they're filling things out consistently. Pretty much what he wanted to be sure I knew was that he has to mark things as very low and that because of how the assessment is done I will come out looking extremely impaired. I know this, it's not really a secret that I'm very limited in what I can do, but he wanted to be sure if this assessment was ever shown to me somehow that I didn't think he was picking on me. It was hard because we had to go through many things that I had to admit that I struggle with or am not able to do yet, and many of them are pretty basic. Again, I know I can't and he knows I can't but having to verbally admit that it is still incredibly difficult to shower as often as I should is tough. And looking at my life is kind of sad. One of the things that is used to help show how impaired one is and compare that to the previous year is called a GAF (Global Assessment of functioning) score. You can read more here. I have to ask him about this because I think the number he told me I would be at is too high (he said around the low 40s but since I can't function at work, socially, with selfcare and my mood is severely impaired I think I probably am lower and if not I'm curious why). As I told him, I know the picture is not pretty and I can face that. I just can't move past it.

The other thing that was hard (true, but just sad to hear someone else say) was I had told him that between crying quite a bit since my last session and getting a little more/better sleep last night and making myself laugh a little I felt a tiny bit better. Because of what we were discussing it seemed obvious that little blips of feeling better have been the only progress I've made in recent months and unfortunately there have been enough blips that even Dr. Overly Optimistic Mind isn't reading a lot into it. I think he felt that the crying may have made me feel just well enough to have that time moment of betterness, but at the same time he kind of said that the tears are good but that I probably am going to have to stop distancing myself so much that much of my crying is my discovering that my face and shirt are wet and my nose is running. Doing that is just another sign of my protecting myself, although crying at all or feeling angry at all or sad is good and I assume a positive step. Oddly Dr. Mind seemed to know that I left more upset that I knew the other day and I think he left things open for me to cry some since it wasn't happening otherwise and I need to do this. He also told me if I really want to kick my mother it's ok. (joke, but another sign that her attitude is about as annoying as I think it is).

I killed time in the city and even called my mom to have her check the forecast because I wasn't sure I was safe to stay for my class. I was on my way from the pharmacy at one end of the city to the class diagonally across it and got a call the class was cancelled. Fine, I had one more quick stop to make that I'd intended to use to kill the last few minutes before class; I just needed some fruit. The roads were covered but not bad. 20 minutes later (30 at most) there had been massive snowfall and I drove home in low gear going 15-20 mph most of the 60 miles. It took an hour to get out of the city; normally from where I left would be 10-15 minutes.

While I was bringing groceries in from my trunk I realized that I had everything out but my therapy bags and that I really needed to take the opportunity and make sure that the only thing in there that belongs to me, my personal stethoscope (read: not cheap), was out since someday those bags will go back to the office and I've been putting off looking inside to retrieve it. So now I have a green stethoscope in my living room and the gravity of the low functional ability we talked about plus the only reason that I would bring that inside, risking not having it at a patient's home, is that I don't need it in the car anymore. Which was sad enough to bring on a whole lot of painfully sad thoughts and tears just below the suface (I imagine I can expect to cry in the next day or so when I least expect it.) That stethoscope represented so much though. It had a lot to do with feeling I was independent and competently able to identify medical issues. It meant that I was doing something that I felt was worth the investment into owning my own, because the company provided one was not very good and I couldn't hear well through it. It was a sign of commitment to home health as outside of school when I had a very cheap one I've never needed one. It is something I won't get rid of. I have no idea what I'll do with it but it is somehow symbolic of a time that I really enjoyed in my life. (Also, I want all the therapy crap out of my car. It takes up huge amounts of space and is doing me no good. If I bring it inside I figure that will be the day they want it back. It's strange what causes the most hurt; digging through my bag of vital equipment was physically painful despite knowing for months I needed to retrieve that stethoscope.

I have absolutely no idea what the other thing I meant to say was. Guess the stethoscope threw me more than anticipated. More later I guess.

Good to know

2012-01-18T23:42:00.005-05:00

Sometimes when recovering from a bad period it can be really hard to share tiny good things with anyone (blog, friends, Dr. Overly Optimistic Mind) because they are positives and hopeful and all kinds of good stuff but they are not a sign things will be better tomorrow or next week, just that things are a little better for that moment. Dr. Overly Optimistic Mind and I have had a couple battles about that because early on something tiny would happen, he'd want me to believe it meant I was getting better, and I knew from experience that it was nothing more than I had a good 30 seconds and eventually it will be 45 seconds.

But after much crying the last couple days I actually just made a joke. Not an overly funny joke, and it's political so if you don't like it please don't hate me, but I read the Duggars are campaigning for Rick Santorum and it occurred to me that he'll easily win one state then and I giggled.

There were a few laughs on my birthday with my niece. We skyped and it was awesome. My hair has always puzzled her because the curls are something she's only seen on me and because my hair is long and heavy and curls in my eyes sometimes I wear it down, I wear ponytails, and I wear buns (which are now almost too heavy to do without hairpins so those may be done). I have an adorable picture of her comparing my hair to ruffles on her shirt. This time she immediately got it: "Ponytail!" and showed me her ponytails. Then she saw my mom's ring and said "RING!" I asked if she had a ring. "yeah" followed by scuffling and her dragging my sister's hand with wedding set into the picture. How smart is that? Then my sister told her to say happy birthday Jen and instead she grinned mischeviously and said happy birthday to my mom. My sister said to her "No, Jen. Grandma's birthday is in SEPTEMBER, a long time away." She just giggled....One dog was in the screen and she kept asking for the other until we got him in the picture. She's adorable and smart and developing a sense of humor all her own. Her father has a dry sense of humor that at times kills me and I think she's heading the same way.

I just laughed again at Michal sledding because she should. Probably true out there. I must admit though that there is a sledding hill near here that is something I never got to sled on: a big hill that is cleared. We sledded (I guess that's a word?) down a hill that was a pasture and straight into the woods. The trick then was how far you could go without hitting brambles or trees. We had contests. So I suppose someday I should get a sled and during the day when the kids are in school I should fly down that hill. But probably not until my ankle is repaired if that's possible because I don't want to have a forced repair because I slipped and fell down this huge hill on my butt.

Anyway, there are a few good moments today. Hopefully tomorrow there will be more.

Sharing the wealth

2012-01-18T19:31:00.002-05:00

I posted a while back about coming home from the hospital to find my cat had pulled hair off her belly and had blisters from licking because she was anxious while I was gone. I've given it a few weeks per the vet and she is still doing it every time I'm gone for a few hours or more (the longest I go is 8 hours but she panics I think). So I called them today and she's starting on an antidepressant. I'm excited though in that the medication is a gel that I dab in her ear and not a pill to shove down her throat. Since she also gets confused/anxious in the night sometimes I'm hoping this will be a good thing for her. On the other hand I am slightly amused that because I'm bipolar my cat needs to be on psychotropic meds. I find it even funnier that we'll both be on transdermal antidepressants (my patch, her gel).

Anyway, I'm having a great time going around the internet and changing my passwords. My information was among that taken in the Zappos hacking and they recommended changing any password similar to the Zappos one. I was fine with one password with them but I don't remember what I used with my very old account that was hacked along with the account I've been using for several years. So I'm changing everything to be sure. I hate changing passwords so I don't do it nearly often enough anyway. Maybe this will teach me.

Ugh. So not what I needed at this moment in time. I am also now a bit afraid to use Zappos, yet I LOVE Zappos.......

New Rules

2012-01-16T23:46:00.002-05:00

It has taken me many hours of thinking about my conversation with Dr. Mind to understand one part. It also took a lot of tears; the number of times I've realized I had tears running down my face today has been amazing. Even driving home the plan was to stop and buy fruit. I couldn't because I kept realizing I was crying while driving and I'd rather not cry in the produce department. After he realized what I meant about feeling I had broken the rules and failed and I think (but am not sure) that he also figured out that I feel like I failed because after so many years I got worse when everyone has put so much extra effort into me. I've never heard him speak quite like he did today and I can't explain that so well. But he tried hard to take the guilt and shame away. So much of it is because I promised him years ago that if I had a desire to hurt myself that I would tell him. When that truly was tested I did not keep my promise. So now we have a new system, that I merely need to say yes or no honestly when he asks me and he will ask me much more frequently than in the past. I honestly don't know if I would have answered differently had he asked me about it a few weeks ago. But it is much easier to answer yes or no so I am hoping that this is a positive change in the system, especially now that we know precisely how embarrassing I find it to talk about this. I still feel sad and guilty that I did not do what I knew to do, but I admit it helps to know that the anger I figured he had to feel just wasn't there and it seems mostly he just feels bad for me. That too is sad but it is clear he feels I'm sick and he's not sure what will happen but he seems willing to keep trying everything he can. I didn't think he had given up, but I did think that he would not be happy that I broke the rules. I'm glad that conversation happened.

Today, quickly

2012-01-16T19:01:00.000-05:00

If you are unable to comment please email me at masterofironyatatt.net

I don't have much to say tonight. I saw Dr. Mind and cried for 20 minutes or so about the changes in my life and how painful it is to see the things that are changing or gone from my life. And we accidentally went into something I needed to hear but which is still making me cry. I finally brought up how angry I am that I can't make eye contact since I worked so hard to get to the point I could do that. And suddenly out it came how awful I feel and how I keep expecting the doctors to be angry because I promised to tell if I was becoming unsafe and I did not do that. I don't think he had any idea I was feeling like that. A lot of reassurance later I still cry if I think about it but at least finally that came out. He seemed to be fairly horrified that I've been thinking this; I think he thought my ashamed act was mainly because of my mother and her guilt. Which is a bit part of it (yesterday it finally occurred to me that she thinks I went to the hospital to avoid Christmas) but I also feel so guilty for not following through with the one promise I have ever made to him. It seems he feels guilty for not asking me about it more a month ago. I hadn't thought much about him feeling that he didn't help enough when that happened because I don't think it was him that didn't do things. But it seems he feels bad too because he doesn't know how to make this all better right now. And I know the reaction to my admitting that I am so upset because I lied was real, not just some generalization like "can't change the past".

So I have no idea what to do with this information but at least I went a lot farther than in the last few weeks today.

Time Travel

2012-01-16T00:19:00.001-05:00

Becky asked:

When you were spiraling down last Nov and Dec, if one of "us" here would have asked you point blank if you felt suicidal, would you have answered honestly? Again, not sure that is an appropriate question, so ignore if you want.

The answer is no. There are a few reasons. It's hard to explain but I was living 2 lives. Part of me was ready to give up. I don't think that part had a lot to say. And on the other hand I was aware that I was having passive thoughts (wish I could die) but that happens a lot. I think I was protecting myself from the scary things I must have been thinking and it wasn't until I was not fighting to stay safe (in the hospital) that I discovered what a dangerous situation I'd been in. It's very hard to explain this because my memories seem to have 2 levels to them. The suicidal stuff was of course part of the depression, but it's almost like the depression was severe enough that I was getting pushed closer and closer to the edge of a cliff but I was mostly blinded by the lack of sleep, profound sadness, anxiety, and horror at how I was living. I did not look too closely at the scary stuff.

Sorry I can't make this make more sense.

6 years of blogging

2012-01-15T22:15:00.001-05:00

Is anyone besides Michal unable to get the comments to open and work?

I made it through my birthday although I did realize that my depression has gotten much worse in the last few days. Dr. Brain is aware and Dr. Mind will tomorrow.

I went out to dinner and skyped with my niece for a bit and that took all the energy from today (I've had little sleep in 2 days. Thankfully Dr. Brain said to quit trying to get my lithium level done for the moment so I can sleep when I sleep and not try to get up. She seems to agree that a sleeping pill is not going to do a lot of good when I'm not sleeping because I'm sad).

Becky asked about something I'd said about looking back. When I say that I'm meaning I am going back to where I was a long time ago. 10 years ago I had no real sense of how I would be able to keep working and managing with uncontrollable symptoms. The different was that bad then it was feasible to just do it, to borrow from Nike. For a number of years I could push through through the force of my personality and I was ok. My symptoms were not well controlled and were really hard to manage but I could manage enough to succeed. I thought that if I could get through those early years that whatever I had after that I would retain. Instead I've taken steps backward while life has gone forward and now I can't do that barely managing but doing well enough to have a career. Backward isn't the right term really I guess because I was not ever here.

I see the recent years as having 1-10 rankings. Age 34 was a 10. The stresses were just normal work or life stuff and otherwise I was indistinguishable from others. A year ago was a 7; things were impaired but it was physical and good things awaited my physical recovery. I was positive that I just had to get healthy and I'd be back to that 10 because there really wasn't anything to indicate that I would not recover from surgery and be fine again.

Why I was so upset the other day is that I looked at the future. Right now I have psych appointments, mental illness class, and nothing else on my calender until vacation in November. And I can't just fill things up because right now handling 3 appointments most weeks and 4 week I see Dr. Brain is enough. But I have never in my life no matter how sick I was had nothing coming. Even when I've not worked I always had work ahead of me. Right now it feels like my future is so very limited. I know that we'll keep doing things to help my depression lift and that I'll someday feel like scheduling some babysitting days with my niece (I'd like to go down and babysit every other week one day when I can do that.)

It just scares me. In the past even when I've been unable to do a ton there have been things that were being given me as nuggets to look forward to. I've been able to see progress and know I can at a minimum try working. This time trying work again is not even on the table. It's not been eliminated but it is goofy to talk like that is coming when the reality is that something changed in me. I supposed I shouldn't say I went backwards as I have never been here before. I did, however, get much sicker and then the part I'm mostly fed up with myself about is that I was so insistent it would be fine that I did not catch that nothing was giving cause to look forward. The sheer relief Dr. Mind showed when he knew that I was aware that this may be the end of the tracks for the life I've had in the last 11.5 years was huge. Months ago he was suspecting that I had reached the end of the line.

The one thing with bipolar is that it is not static. At some point a new medication may be released that gives me some function back, but we will always be more cautious with stress levels and if this depression can be lifted (and I do think that will happen) then we will figure out what amount of stress I can handle.

The letting people down thing had a bit more relevance when I was in the hospital. I know and they know that I did not cause things to get worse. However what I am fighting with shame over is that I have a very few rules I life with. One of them is the promise I've made so many times and up to now has more or less been kept: If I felt like hurting myself I was to get help immediately. Suicide is kind of a creepy thing and when you feel tremendously depressed you often are too ill to act on what you feel. The danger comes when either you impulsively feel "THAT was the last straw" or when you start to have more energy (this is particularly true for me because I usually leave depression and head for mixed states where I get little bursts of energy) then you are at greater risk for killing yourself if the suicidal thoughts are serious enough. It's hard to know what serious enough is and for that reason I've made promises that I will tell about anything of that nature. As it turned out when I was somewhere safe and talking to other suicidal people as well as to Drs. Mind and Brain, I not only had not told about thoughts that had become to be the main thing I thought about, and I truly had no ability to disengage enough to see for myself that if I was laying in bed staring at a particular bottle of not-incredibly-safe meds knowing that if something better didn't come along that I could ingest those anytime I felt done. Trying to decide when I was done bought me enough time to get to the hospital, but it still took a number of days before I was willing to admit that not only did I lie about the feelings I had I also lied about something much worse, which was that I had a plan of how to die and I fully intended to carry it out the day I felt unable to handle it. That is what makes me mad at myself; there is one rule and I broke it. It's been really weird because the hospital dr. felt that I was a reformed creature and would not be at an elevated risk. My doctors, who know me so much better and know that I have always complied with the telling rule, they've taken it ultraseriously. Both of them know that I have never gotten near this suicidal before and that I may have gotten help but totally outside of the promises I'd made in the past. So I also feel bad because I scared them and made me so they have to babysit for however long it takes to be safe. Which may take awhile because as long as I slip over the edge into severe depression over and over again I need monitoring.

Mostly though, at this point, I am having trouble not looking at the much more normal calendar that existed in my head 2 years ago today, as opposed to now when most of my mental calendar is full of "get well". I know that I am so fortunate to have income to support me while I go through this and that I can go through it when not everyone is as blessed. However it still feels like "feel better" shouldn't be the hardest thing I have ever done.

And so begins blogging, the 7th year.

Exhausted

2012-01-14T17:00:00.001-05:00

Last night I was up crying until 3. Then I had nightmares for many hours. I'm completely exhausted. No blogs today. Maybe tomorrow.

Empty life

2012-01-14T00:50:00.001-05:00

So I sort of forgot my stupid birthday. Dr. Mind mentioned it and I thought I was fine. And in a way I am. But my issue with my birthday is that in the past a lot of hard things have happened on or the day before my birthday. I have cried on my birthdays more than anyone should. And this all cemented when I had a period of several (5?) years in a row that all had something substantially bad on those 2 days.

Tomorrow is the day before my birthday. Sunday, obviousky is my birthday. Please don't say happy birthday because I don't like it that much. I couldn't care less about aging but every year old memories greet me. Because Dr. Mind worked exceedingly hard at this for a few years, like as in we worked on it for two months each time before it came around. This made it not so painful but far from my favorite day. This year I assumed I could manage and that I did not really care very much. We only talked of this for about 3 minutes before the end of the session. I truly thought I was fine.

I didn't count on the current feeling that everything that can go wrong seems to and that I am looking at my birthday more as a good time for something else to go wrong and a time that I have to force myself to not reflect on the last year because 35 sucked. It just did. And 36, while I sincerely hope that it is an easier year is bound to have some seriously painful moments. It already has.

And I can't explain this, (confidentiality promises are innate in the class I am taking), but looking around last night I did not see anyone who I thought was going to be my new best friend. There was nothing anyone said that I really clicked with. I actually wound up thinking "well, I don't belong, these people are too sick" or "desperate for help to the point they aren't listening to what we're asked to say" but me? I was the one knitting because she's incapable of sitting still. From what I picked up I'm probably the most recently released for a hospital and also possibly most likely to be fighting serious suicidal desires. I don't know who I am or where I fit anymore and for so long I got used to being able to do so much that I shouldn't have. A lot of my identity was wrapped in up the notion I was succeeding against the odds. I knew that Drs. Brain and Mind had more to do with this than I did at times, but going from developing the home health agency's OT program (did you know I did that? I did. I was the first OT so how things work and the education that the staff have been given came from me) to starting to say this week when people asked me about work in a couple ways that I am not working and am on disability. Starting to say that is probably a good start. Both times though I was totally aware of my sad, sad voice. One of the people teaching the class is someone I've professionally interacted with a number of times. In fact I think she's peripherally mentioned on this blog in a professional capacity. I talked to her about it and then said I was not working. She said the same in just as sad voice. It is so hard. Without being an OT, without succeeding against odds, my identity is kind of unknown. I've said numerous times to Dr. Mind and probably on here that the entire suicidal episode made me have no idea who I am because the real me wouldn't have done any of what I did and would in fact have been running to Dr. Mind for help. But the loss of who I am is even more clear as I try to face that so many of the things that I thought made me who I am are gone. I'm Aunt Jen, but I'm too sick to spend time with my niece. I'm a Christian without much interaction with churches or the Bible aside from what Michal brings to me. I'm still an OT but I'm also not an OT. I remember asking a patient who was quite moody and I was trying to build rapport "So how long were you a nurse?" She snapped at me that she still WAS a nurse. At the time I kind of thought "whatever, you know exactly what I meant and you are retired now". And now I totally understand not wanting to give up that part of who someone is. The person I was a year ago would not need to be in that class. That's the thing that I left with that was so obvious. I was still bipolar a year ago and I still had a severe form of the illness. But I was NOT severely ill. Now I am and now I am very confused about who 36 year old me is as opposed to 34 year old me (35 psychiatrically was not bad but 34 was the year I thrived. And I think I thought for a long time that 35 might have been tough but that I was getting my asthma under control and the surgery was going to fix the other problems I had and by the time I turned 36 the nasty year of bad health would be over and I would be back to being the real me, the one not so sick. And instead I'll turn 36 in 24 hours and the rest of my life kind of stretches out in a frighteningly blank stretch. I've never had a birthday that I can remember (I probably didn't have huge goals when I turned 1) that I had no idea at all what my life would be like in 12 more months. I have had the wrong picture before, I've had things go much worse or much better than I would have guessed, but always there's been something on the horizon. Now I know only that the goal is to get me to stabilize and that's my future, trying to get there.

This hurts enough I'm crying. I've been terrified to cry, especially without Dr. Mind or Brain. But I hate this. It's scary and it sad. It is so sad. I fought so hard to work. I am not saying it was always wise, it wasn't. But a huge chunk of me has been lopped off and it's not overly likely that I'll get that chunk back. And an empty life is I think what I wanted so badly to avoid with the suicidal stuff if it is put in a nutshell.

Well, Dr. Mind wanted me to write......I guess I did.

Sad

2012-01-13T19:32:00.001-05:00

I am so sad today. I have no clue why. It's been a harder week so maybe that's part of it. Maybe it is the snow and freezing wind (which feels as bad as the coldest I've ever experienced, which was -20 and locked myself out of my house with wet, shoulder length thick hair back in grad school. Did I mention that when I did this my car was running and I was locked out of it too? I went out to let the car run while I dried my hair and brushed my teeth every day. Since I lived in a city I always left one set of keys in the car while it ran and then when I was ready to go I brought out another set of keys. That day when I went out I automatically locked the house door and didn't realize it until I'd already locked the keys in the car. It was so cold that day that I started it a little early so I wouldn't be late for clinicals, then while I was finding an awake neighbor to ask for help at 6:30 AM (I had to call AAA to unlock the car; there were housekeys on the same ring) and then since I was clearly going to be late I called in, only to discover the message I had missed while outside that the school was closed due to the dangerous temperatures.

I did go up to the post office. No package. Hopefully I'll make it in tomorrow.

I think that my mood is affected by anxiety. However I only am allowed one anxiety pill per day and I keep putting off taking it until night because that's when the worst panic attacks are. I'm not even taking them nightly which I probably should when one is still available. It's hard because the hospital pulled me off anxiety meds totally (first they tried changing klonopin to ativan which didn't work so they took them away). While I understand why, that until I'm further out from my suicidal days having much of the medication I was most focused on and which is the only dangerous med that could be taken from me (conveniently the other truly dangerous one is lithium which I'm not about to overdose on--Dr. Mind is able to keep me from having these anyway. He doesn't actually count what I'm doing or even really watch me anymore but it's pretty clear that I am to behave responsibly with meds in his office; I think not doing so would be an even greater violation of trust than anything else I've done lately.

Sometimes I think I'm sad on these days just because I know that I was incredibly stupid and broke so many promises that I've made many times over the years. Yet the people who I promised are being kind to me instead of yelling at me and I think it would be easier if they were mad. I can't believe the series of decisions I made that were dumb and everything I've been taught not to do without seeking help. I feel so frustrated with how many backward steps I've taken even after I corrected the first mistake. This whole last 5 days has been rough. I did go to the post office and had a brief conversation there so I met the requirement of doing that today, yesterday, and Monday. Tomorrow or Sunday I'll be going out with my mom for a while to celebrate my birthday so I'll hit 4 times which is the goal. But I do not feel happy. I guess nobody said I had to, but I'm just frustrated with myself.

Partly that is for the dumbest reason ever--I'm really disturbed by the inability to maintain eye contact. Like disturbed enough that I need to talk to Dr. Mind about it and hopefully he'll tell me I've done this every time I've been really sick and I don't remember it.

It was a very, very hard won achievement for me to do that. Hard enough that during therapy school we'd have personal goals with these mini-projects we did and that worked so well that they carried it over to most of our other classes. A classmate suggested I work on that and it was really an achievement of my entire grad school class because everyone helped me with it. We had one class that we would be given one of 2 theories of OT to learn every week. In that week we were responsible for learning everything possible about it and then in the seminar we divided into 2 teams to debate and discuss the 2 theories paired for that week. I absolutely loved the class. It was the best of most academic talents that I had and because I used to have until I got sick a pretty much photographic memory it was a chance for me to excel because I would read the theory and every research article I could find and memorize all this so everyone would have these huge stacks of articles and I had a few note cards. It was fun for that talent to actually have a purpose, and I really liked turning the information around in my head and finding good and bad things. I remember the day that this girl who aggressively tried to be the highest score in every class, even one like this that was basically pass/fail up until one paper at the end that was pretty hard to fail since it was called "My theory of OT", but anyway, I remember one debate getting intense and everyone made a big deal because while we were debating back and forth I maintained eye contact the whole time.

In 2007 vocational rehabilitation did an OT evaluation of me. The end result of that was that I learned that my eye contact lessons had paid off as I made better eye contact than anyone else with severe bipolar the evaluator had ever seen. With Dr. Mind it is also something that was hard won; I remember about 6 months into seeing him he stopped a conversation mid-sentence to ask if I knew I'd been looking him in the face for 10 minutes and what had changed? I was so proud of that. And while I've often not looked at him much when dealing with something hard it's been 6 years since I couldn't maintain eye contact at least some.

I am just not comfortable with who I am right now. Which really isn't necessarily bad since getting comfortable with a very symptomatic me would not be helpful. But it is somehow symbolic of how wrong things are just now and I really hate it. I also hate the reminder that I'm probably not doing this because I'm embarrassed. And because of what it was it's not like we can just agree to move on and forget what happened.

Anyway, this is a weird post and I don't really have a good reason for feeling sad, I just do.

Secrets

2012-01-13T15:02:00.000-05:00

For the time being I would say it is unlikely I'll be posting on Thursdays. That's a long day! I see Dr. Mind at 1 and my class is from 6-8. Dr. Mind suggested that I move his appt. to a later time but for now I want to see if I can do this.

Yesterday Dr. Mind and I talked a good bit about feeling safe. I don't. He was matter-of-fact. I've been in this place before and we've fixed it, etc. Fine, but it's never been the reason I'm scared now. I left knowing the bottom line is that I do not trust myself. In the past I have not trusted crying or anger or some emotion. This time it is me that I don't trust. So we're both right. I did not leave feeling we'd fixed anything or that I'd provided an information he did not know. Yesterday was grab needed meds day. Since he has to give me the key to do that he has been getting an education on how many pills I take each day. He's rather amazed. The funny thing is that he's not even seeing nearly all of them because I have a few harmless meds at home. I still can't make eye contact and hold it. I hate that. I also can't talk loud enough. Dr. Mind has hearing loss and has to keep moving closer to me. I sound very critical of myself there; these are just things I've worked so hard on and not being able to do them is frustrating. There was one somewhat funny moment when he said something about my birthday being soon, how was I feeling about that. I answered something and he thought a minute and told me I am the only person he treats whose birthday he knows. So I'm special (actually I have birthday trauma that we worked very hard on for 2-3 years which is where that started. Plus my birthday is pretty easy to remember as it is Martin Luther King day (the actual date, not the day off work for some places) and it is also 3 weeks after Christmas exactly. So there are more tricks to remembering than many birthdays. It still is funny. Especially since I think he said that because I was surprised he remembered since this year I really don't care.

The class...not sure what to say. It sounds like some of the content is going to be very helpful and some I will know. It sounded like 50-50 or so. Yesterday was much more impressions of people and I can't say anything about that. I wound up needing to knit through a lot of it to keep my fingers busy and me in my seat. They were fine with that; I explained briefly that I'm off anxiety meds and am not sitting still just yet. Dr. Mind is going to have an interesting take on one thing; they go out to a nearby coffee place after class after the first week. While I know going would be good for me I really don't want to not get home until 10 as it keeps me awake. Also coffee places frustrate me because I don't/can't drink coffee and the price for a cup of tea at this place is ridiculous. So hopefully he won't make me do that part. If it were summer it would be one thing but it is decidedly not summer (we have our first real, albeit late, snow fall, along with wind that is making it quite chilly today. I hate to turn up the thermostat because I was freezing when I woke up. I made it to just outside my town before it started, so that part was good).

I still haven't heard anything from work about my inability to return for many months. I was not very specific, just that once I stabilize it will still be many months before I can return. I did not say it may take 6 months or more to stabilize, then 6-12 months to meet the requirements. I said it how Dr. Brain told me too, in a way that should have let them know things are seriously wrong but without being at all specific about that.

I need to go to the post office. I am anxiously awaiting a package. And I just reminded myself it will be closed Monday and tomorrow I don't know if I'll make it out. I hope I'll finally get it together to get my blood drawn. I keep trying and failing because of not sleeping well, forgetting what time I took the meds when I shifted the lithium to later to make the blood draw easier, etc. I was disappointed last night because at first it seemed I would fall asleep earlier than I've been doing lately (the insomnia is acting up although once I get to sleep I do get 8-9 hours) and then suddenly I was wide awake again. And that kept me up so late that there was no way I was going to get up in time for the stupid blood draw. It will happen. It may give Dr. Mind a stroke first, but he does understand my problem. One advantage to the weird way the hospital dr. did it was that the levels were drawn at 4 pm. The problem is that this number is meaningless in the context of years of 12 hour draws which make up our knowledge of how I usually respond.

Anyway, must go to the post office. At this rate they'll be closed when I get there. I really don't want to go out in the snow and wind. Waahhh!:)

Hard work

2012-01-11T23:04:00.004-05:00

I have a memory foam mattress. The one I have has a cover and kind of a pillowtop that make it look like a regular mattress (and decreases the extra heat from the foam as well as providing more support. It was starting to be less comfortable and so I contacted the company and they said that it could be flipped and then the pillow top zipped onto the other side of the mattress and that this would make it more firm). (The problem comes from sleeping alone; when the mattress is only turned and not flipped this means that some parts never get used and the parts that did get used were getting uncomfortable). It took me 2 hours, including rest breaks. Turns out that after removing all sheets, blankets, both mattress covers (one for allergies, one water proof) and then unzipping the pillowtop part that they didn't mention the part where the mattress is encased in what looks like the outside of a mattress and that flipping it means you have to put that part back on and that this is not easy. The mattress is quite heavy and I thought that would be the hardest part but it wasn't, it was lining things up. I also thought zipping the pillowtop on would be tricky and that was possibly the easiest part. The hardest part by far was getting the mattress aligned in the casing. Lots of lifting, pulling, balancing things on my head (only did that once since I nearly was knocked over). I think it feels better but it's hard to tell for sure yet. It did look like the bottom doesn't have the same few inches of higher density foam that the top does but I think those were something I got that was optional. I also have to get a new allergen cover at minimum as neither cover will zip anymore.

I also was shocked to discover how much damage a single straight pin that had gotten into the mattress cover somehow (weird since there has always been 1-2 mattress covers on this mattress).

I sincerely hope this tired me sufficiently to give me a break from insomnia. Right now it seems it may. I hope.......

In reply

2012-01-11T20:14:00.001-05:00

Michal asked another good question more than 1 person may wonder about. So here's the question and answer:

Why do you say you'll never be free from precautions? You suspect that you're the "sickest" patient at this time but you seem to be stabilizing at an amazing rate. I'm not into "speed" or trying to deny serious concerns but I see growth already.

I was exaggerating. But it's important to also know this is a 2 steps forward, 1, 2, or 3 steps back thing. I took a big step backwards yesterday with the (fully expected) return of the non-dangerous but still shouldn't have them thoughts of not wanting to live. Since I have to prove that I'm stable and safe and can maintain that it just is going to be a long time before I have everything back. Which is fine. What happens is that between brain chemistry and illness and stress every so often my brain takes a big step backwards into wanting to shut down or die territory. It's how getting over this works, but the last few days have been harder. Some, a lot, of that is that talking to Dr. Mind is going to be tough tomorrow and my brain chemistry has gotten used to the answer to I'm upset being I want to die. I have a feeling that they'll make me handle a major stressor before they feel I'm truly safe. Because I've dealt with so much for so long without becoming the way I've been the last while it will take even more time to show I'm fairly stable again and that my brain has found a new default.

don't you think it's possible that one day you could work part-time? It's probably way too soon to think about that but on the other hand, you might need that hope.

Working part-time and my disability insurance don't mesh. So unless I get so well that everyone feels that I am unlikely to need disability again for many years if ever and that I'm well enough to work full-time (for income as well as benefits) I can't go back. On SSDI you can work a little bit but I have private disability insurance that doesn't allow that. Even if I do go back to work it is unlikely that I will try OT again. I don't think there are any jobs that are not stressful (part of the problem with working is that we have to know I can handle stress without going backwards) but because of the shortage of OTs in this state it is pretty difficult to not wind up overdoing it. If I were to say I can work 8 hours/week it would nearly certainly turn into more than that and I would be totally stressed about sticking to less than disability would allow because the patient needs are always so enormous.

Right now I am actually feeling better focusing on NOT going back. I still may although the requirement to do so is pretty hefty, but right now I can't think about taking on more than this minimal life. The last few days I've not managed to leave home or go outside. I'm tired. I have done some cleaning/organizing and in a minute I'm going to remove sheets, blankets, allergen cover, waterproof cover and mattress top from my mattress, flip it, put all those things back on (it's memory foam and hopefully have a more comfortable bed. But I haven't managed to push myself to even get mail because I haven't been sleeping and even that 1 part of the system is able to mess up the rest of it. There are so many pieces to work that I find the idea overwhelming. That's hard to admit, but at this moment that's the feeling. I also know that if the people treating me think this is likely it truly is because they've never given up on my ability to work before and now nobody is sure where this is heading aside from not a great place.

Don't worry, I'm not upset. I needed to think about that to clarify my current position. I actually am probably making myself shoot lower than I hope for just to decrease the risk of being hurt if things don't work out. It's been so long since I felt ok that it's hard to believe that will ever come again. It's not impossible but the cost to me may remain too high. Or not. Mostly the plan to to prevent suicidal thinking and go from there.

More quotes

2012-01-11T13:36:00.000-05:00

A young woman who I babysat years ago when she was a toddler (now in college) posted this on facebook today. I am trying to remember it when I feel sad about my working situation.

“To know even one life has breathed easier because you have lived - that is to have succeeded” -R. W. Emerson

I have done that. I may be stopping earlier than I hoped but since I have to stop thinking of that as failing I think I will try to focus on this.

I also have another quote from me, written just about a year ago:

In fact he {Dr. Mind} told me the other day that I'm no longer his most acutely ill pt. I think this is supposed to be a good thing and all I can think is after 5 years???

I have a funny feeling I'm the sickest again and I bet not only have I reclaimed my title months ago I'd also bet that I will be holding on to it for a long time. I was grumbling about hating not having access to my meds and said that I did realize that the fact I was feeling annoyed by our arrangement was a sign I was improving. I also thanked him because it feels awkward to fill pills with him but it is WAY better than if my mother were involved. He really is annoyed at her, I can tell this because that was what he wanted initially and I begged him to just keep the keys for me so I didn't have to involve her. Now he even commented that she'd be likely to be obnoxious about it and lecture me. Glad he came around to this. But I still apparently am far from being trusted since my grumbling led to "No sympathy" said cheerfully. I am never going to get free of these precautions. My own fault and truthfully I'm glad to have them but it is not fun to have to remember that I need to get meds out and to do that with an audience.

Oh well.

I am titleless

2012-01-09T19:57:00.002-05:00

Sometimes I think titles are the hardest part of blogging......

I am...something...tonight. I saw Dr. Mind. We laughed at my medication traveling kit (he has the key to a locked box that any unsafe med lives in. I am carrying this back and forth as needed with add or retrieve pills. It is annoying but he says he doesn't care if I'm annoyed. So we continue, noting my feeling comfortable enough to not be annoyed is positive.

Today was the first day he really has pushed at me much since I got home. I know that it is good that he feels it's ok to not be extremely gentle but I did not realize until after I left that I am terrified of feeling much of anything. Because handwriting things was very helpful in the hospital he's been trying to get me to do more of it. I told him today that I am afraid of that because it brought so much out that doesn't yet feel safe. So we talked a little about how so much that has happened in the last year feels like a sad ending and we talked about my prediction in 2006 plus the story about being told that 2 years was impressively long to work with my severity/type of bipolar. So 11 years is more than I should have had, statistically. And for the first time we talked for a bit about my regrets about some things. We talked for a minute about my fear of being hospitalized again. And we went through a few hard, pointed questions, about suicidal thoughts (every time we do this, I am getting more used to it). This time he pulled out the other question I'm going to grow to HATE: What am I not telling him? I truly can't think of anything and he seems ok with that. But the effect was to make me feel when I let and realized I had be very wrong about something that I might have lied, something I am very aware of right now after the lying that I did. But what I did was just say what I thought and then realized I was wrong later, which I am allowed to do. When I told him why I don't want to let myself get upset I initially said that it wasn't that I was scared if I felt sad or upset that I would return to the scary place I was in 3 weeks ago. But that is exactly it. I am afraid to face the sadness about the changes in my life because I am afraid of what happens if I do. This means, of course, that I need to do that with him and that I very much need to feel those things, but I am terrified what could happen. The last time I took a hard look into what I can and can't do was pretty unpleasant. I'm terrified to look harder or to try to figure out how I really feel alone, and doing it with him is hard too. We tried today. When I cried he moved on shortly after. Next time I'll tell him I was wrong and I do not feel safe looking at things that hurt. I need seriously huge amounts of handholding right now. I know that it is normal enough to be afraid after what I just came through,. It just is really hard to test my coping skills right now. I have had some bad times when I needed a lot of help to cope but it's never been quite like this.

I truly hate feeling so fragile. I see a pale, sad face when I look in the mirror still. I look like I have been through a lot. I have been. I just haven't yet figured out how to process and start living with everything. I don't know how to trust myself anymore. I really scared myself because I was one impulsive moment from something really bad happening, as well as one moment of deciding that was it not impulsively. I keep thinking of what Dr. Mind told me when I had just gotten out of the hospital, that if I choose to hurt myself there is nothing he can do. He can make it harder but he can't prevent it. Which just makes me more afraid because it is true and so I do not want to risk feeling like that. I think I've got a better means to handle it even if being sad is as risky as it feels. I know that I have made decisions about living versus dying and that it is different now because I have help with that because I got around to asking for it. Nonetheless, feeling sad or crying or feeling any of the other hard things that go with my new understanding of my situation terrify me.

So we'll be taking a huge step backwards apparently and relearning that being sad doesn't mean being suicidal and that I do have a safe way to manage these things, I just need to use it.

And actually I think the step backwards is already happening. I am not able to maintain eye contact. I can't with either doctor. I haven't shut off feelings for years because I've trusted Dr. Mind to help me handle what felt awkward. It's been only a few weeks since I went into complete shut-down mode. It does not help that it feels like that was a lot longer than a few weeks ago.

Anyway, it is hard. I am now exhausted because of how hard it was. And the next one will be hard too because we have to talk about this.

Looking back

2012-01-08T19:05:00.000-05:00

When I included that little story about Dr. Mind the other day I had totally forgotten that when I first blogged I kept it so removed from my life. I had been blogging nearly 9 months when I said I was some kind of therapist. I also didn't talk about what happened with my doctors, especially not in therapy because I was scared someone would stumble into that. At the point that was written I hadn't even created nicknames. I was trying to see when I did create nicknames when I found a posting marking 4 years of official diagnosis. I am very aware that this year I will be at 10 years since diagnosis. What I had forgotten was one of the ways to know how amazing my years of working were for me to have achieved that. For someone who has never heard this story after realizing that I was more than likely bipolar and having this confirmed by a therapist who'd never actually treated someone with severe bipolar I wound up discovering that Case Western Reserve University has a mood disorder clinic that was headed by a man considered to be a world expert in bipolar (Dr. Calabrese). Because of the severity of my symptoms they jumped me over the waiting list (they wanted to hospitalize me to start but back then Ohio did not have a mental health parity law and I had no insurance coverage for psychiatric hospitalizations and a $4000 deductible before they'd pay for any mental health treatment). You had to have someone who could verify your symptoms so my so-called best friend (who in just a few months would be the so-called-friend-who-decided-bipolar-made-me-not-a-Christian) came with me. Thankfully they had her sit kind of behind me and verify mainly with nods so I really never knew what she told them. Hindsight says probably not the best choice of "friends" but it worked.

Anyway during these next months there is something I had forgotten that helps a little (at least right now it does). That little thing is that I made it much further than I should have. I had forgotten because I took working for granted and it is wonderful that I could do this. So the Sept. 2006 story of Sept. 9, 2002.

The evaluation itself was exhausting. That's mainly what I remember, how tired my brain was at the end. He asked questions about everything in my entire life and how I did things, reacted to things, approached projects, etc. He walked back through my life year by year to find when I truly first had symptoms. He started predicting the patterns that identified the variations of bipolar that I had. That amazed me; he could ask "do you do this?" and then tell me that I also did this and this but not this.

At the end he did something that I have remembered a million times when I have been most frustrated. He asked me how I had done so well for so long. I had gone far beyond when I statistically should have been clearly diagnosable, and I had avoided pitfalls I was statistically extremely likely to land in. At that point it was amazing I had maintained a job for 2 years. What he didn't know was that I hadn't even missed a day of work due to bipolar symptoms yet and I wouldn't for another 5 months. That made me feel so good, like at least if I had to have this at least I wasn't totally handling it horribly.

Even with that comment in 2002 it wasn't until 2004 that I was on disability and that was simply 6 weeks for treatment of akasthesia and vision problems as a side effect of Abilify. I made it to 2006 until my first real disability and even then worked 5 years after I went back. It seems less horrible in these terms. I did what I shouldn't have been able to. The current changes stink but they could have come a lot sooner.

This is very weird. Also in Sept. 2006 I wrote:

I seriously doubt that I'm going to be able to do this for a tremendously long time. I'm arbitrarily picking 5 years as a point that I hope I still will be working.

And Aug. 6, 2011 seems to have been my last day (at a minimum for a very long time). Self-fulling prophecy that I did not remember? One very good guess? Again I totally had forgotten that and in the last few years had come to believe that I could have a normal career. Compared to how hard working used to be this was reasonable. But bipolar is ugly and I forgot that just because I well for a long time that did not mean the future would stay that way. All we could could do is hope and I suppose I took that further than was best for me.

This has been interesting. I had actually forgotten that I felt a significant decline in 2006 and that I struggled for over a year to adjust to a decline in my functional skills along with having very few med choices left. Sound familiar? I wrote this in 2007:

This week is when I'm going to start my new psychological adventure. It is time, I believe, to begin to determine how to not put myself in the same position I did this last time. I made myself miserable for a long time by insisting on believing that "better" meant back to the way I was, the way I knew myself. Instead, when I finally gave up and accepted that I lost ground that was permanent, I was feeling better (in new ways) in a matter of weeks

I could have written that today. The difference is what I was losing. However, even some of the same issues I was dealing with then are still in place, mostly that there are 2 meds left that I haven't tried and am not allergic by default or are contraindicated with something else I take: Zyprexa and Clozaril.

Here's another one from 2007.

I saw my therapist tonight. He was pretty happy with how I'm doing. I've actually come to an acceptance of my current limitations over the past few weeks, and that really is working. He told me this is one of the days he got a glimpse of what I would probably be like without this disease. That, of course, is very good. It turns out that not fighting how I feel is maybe even letting me feel better, because it wastes less energy. It also is encouraging me to take it slowly, which is simply not my usual style. I'm trying so hard to follow my body's lead this time, and it is just possible that if I had done this sooner like everyone encouraged I might have suffered a bit less

Somehow I don't think that conversation would happen again. I think he got to know me without symptoms. And now that is gone. I was adjusting to my illness progressing at the time this was written but there was no way to know that 2 years from them I'd actually start feeling normal much of the time for nearly 2 years. This time though I know that it was obvious to everyone else before it was to me that I needed to be off work indefinitely and my reaction to that was terrible as I tried to adjust to it and I have fought kicking and screaming against what was happening for months until I finally gave it and decided to try to live this way even though it's hard to consider.I think that now that the time I was being prepared for a few years ago happened for real everyone had started to think it was not going to happen and that I'd keep avoiding the end of who and what I wanted to be. I am glad that I have been back through this though because it helps to know that this did not just happen, that it was a very long process and I now have a reminder that while I'm sad about the ending I made it nearly 11 years which is amazing.

I need to change my sheets. I really hope I'm right and there's a clean set in the closet because I really don't want to have to do laundry tonight. Tonight's wild plans include clean sheets, a shower, feeding my worms, a bit more watching a movie, gathering laundry to wash tomorrow and bed. And this post is way too long. So good night.

Appointment

2012-01-07T20:57:00.001-05:00

I saw Dr. Brain today. I laughed a few times. This is good. Nothing huge. I did get some medication for anxiety but will be using as needed instead of on a schedule like before. I'm just glad to have some available. I am to log my lithium symptoms. The log has begun with ugly headache of the day which has me lying in the dark typing. The computer screen isn't too much light but the lights are. Tylenol didn't do anything. Hopefully the next dose in about an hour will. In the hospital one of these lasted 24 hours. We talked about the future. At this point she says I need to be stable for 6-12 months before we talk about working in any capacity. She did agree that I can talk to the surgeon about the ankle repair I need to have done. The lithium makes me clumsy with 1 fall and 1 almost fall in just the last 10 days. And if I would wind up working again I wouldn't want to be off for some time for surgery. However the only way I will consider surgery is if he can do it with a nerve block. I will not have general anesthesia for something elective. If he can't do the block I'll just keep wearing a brace. I sent an email to work which was painful. I hate this; it feels like I've not be responsible in getting back to work. I know that's not true and that I've done everything I can but I am still amazed that not a big deal surgery somehow led to this. It was supposed to only be 2 weeks off post-op. Now it will be a minimum of a year and that's if I stabilize today.

She did tell me that the NAMI class I'm taking varies with the leader but can be extremely helpful for experienced patients along with new ones. Hopefully I'll get a good leader.

My cat is going to have to take anxiety meds. I was only gone for 6 hours today and she'd pulled more hair off and caused a new blister in a different place than the first 2. I've been trying to not be gone for too long at a time to help her see that I do come back but this has limited effectiveness. So I'll have to medicate her before I am gone for long.

Ugh, my head is killing me. I think I'm going to get some meds working and take my tylenol a touch early. I'm at 6 hours now for this one. I think of any lithium issue these headaches are the worst. They are just short of being migraines and I've had easier migraines than the headache in the hospital.

It still amazes me how much of an impact being in the real world for long has right now.

Normal

2012-01-06T22:05:00.002-05:00

B. just, like I'm probably stalking her just, made me smile. And since smiles are apparently still pretty rare I thought I'd share this one. All it takes is the phrase "new normal".

The first year that Dr. Mind treated me we had a few disputes. Ok, a number of disputes. One that we've discussed many times since was the time he absolutely left me horrified.

I had spent years pushing and struggling to appear entirely normal. The end result was a mess with work where they had no clue that when I started saying that doing my job and my assistant's job after she was fired (which meant working 60 hours per week plus a 75-90 minute commute; seems that has been my fate to lose things over driving distance) was too much. And eventually this put me on disability for about 4 months. That along with lithium toxicity, the stress of changing therapists from one who didn't hold me accountable to Dr. Mind who does, stomach ulcers, and some other things. And during those months I worked very hard with Dr. Mind. It was the period of time in my life that at 30 or 31 years old I learned to cry. Kind of, since mainly I cry with Dr. Mind and rarely otherwise, like rarely enough I'm not sure Dr. Brain had ever seen me sob until last week and she's treated me for much longer. It was the first time anyone pushed me to talking about and dealing with some of the losses related to working. It was also the first time I wasn't sure and nobody would promise that I was going to succeed at work when I returned. So I had 2 or 3 months that were very hard and then a few weeks that were more about adjusting gradually to the changes in how I saw myself. Until that time I had never thought of myself as disabled or that I wouldn't always manage. So soon before I was to go back to work I said something about being able to be normal again. Dr. Mind stopped me and said no, that I needed to stop thinking of how to be normal and start thinking that I was living and managing but accomodating my disability. I was just learning to look him in the face while we talked. Anyway, we went through a number of sessions talking about my desire to be normal and how that had to change to a desire to live the best I could because I was putting too much pressure on myself trying to be things I couldn't. Since then he's brought it up every so often, partly because it has born repition and revision, and partly because the face I made was apparently rather memorable. Here's what I wrote the day it happened:

This blog is the only place in my whole life where I publicly say "I'm Just Me and I'm bipolar and I have some ugly symptoms, I do weird things to cope, and either you accept that or you can leave". As may be obvious, otherwise I pretty much hide. I tell close co-workers a little bit. For all the years I've been diagnosed and the years before that when I should have been, I've spent most of my time pushing very, very hard to seem absolutely normal. Over the last year or so this has worked less and less well, but I've never done anything else so I've continued. Ultimately it got me in trouble because I refused to say that I couldn't do something because I knew that if I did not have bipolar disorder I would be able to do it. Therefore I used up every ounce of energy I had, and kept working long past when a sensible person would have said no more. So I have spent a lot of this summer fighting with the fact that I'm sick and this means I can't do everything I want to, or even need to, do and that I have to quit fighting this.

So today I was sitting there curled up in my chair as per usual talking about returning to work in SIX DAYS and how I was scared that I would not be able to seem ok. I thought that "ok" was a reasonable place to aim for (it's less than normal, after all), but the psychologist told me that's not it. He told me I'm not ok in terms of being able to do the same things everyone else does, and I need to focus on doing what I can do, not on what some standard I'm setting is. Or something like that. But I reacted much like he had slapped me; I was really startled by this concept put quite that bluntly. I have no idea how to not push as hard as I can; it's not just my coping technique, it's my personality.

Ever since then he has pointed out to me when I was dealing with "normal" issues. In the nearly 2 years that my meds were exactly what I needed he would frequently tell me when work was hard or I was tired of dealing with people that I had wanted normal so badly and that I was living a normal life. Generally I'd wind up smiling and admitting that this was true. Unfortunately I think during some of that "normal" time I was starting to get sicker and it was masked by the physical problems. I have no way to know when my mood started to get messed up. I think that it was around when I went back to work after my vacation in June. The end of June is when I started to have constant pain and I know that by July I was having panic attacks, including one severe enough to require a phone call to Dr. Brain.

But anyway, the point is that normal was a goal for me, one that I achieved. I had about 18 months that I was able to say my problems were normal. It was a nice gift that certainly didn't seem likely. I don't think I want a new normal yet. I'm still grieving the loss of the only time I ever had normal. Losing what even Dr. Mind thought I would never gain is part of what hurts the most; the last 2 years were bonus time for me and going from better than anyone dreamed I'd be to long-term or permanent disability is really rough. I don't want to ever get myself so attached to an idea when so much can change so quickly.

Normal for me is probably never going to be normal normal again, making it something I need to stop thinking about having. One lesson, learned twice.

Let's see....

2012-01-06T18:01:00.000-05:00

Becky left a comment that she's probably not alone in the questions she is asking. So I thought I'd answer here.

I read your post and all I can think of is the word "relief". As a mother hen type, I am SO SO glad to know you are not going to be rushing back to work, and that you will now afford yourself the gift of time to heal and get better.

Deciding this has been hard, which is why it helped a great deal that Dr. Brain told me while I was still in the hospital that she did not want me to return for at least 3-6 months but since she kept saying June at the earliest she meant 6 months. She also talked to me then a bit about being off longer. It seems everyone who treats me is in agreement here. This was hard because my doctors took the suicidal stuff a lot more seriously than the hospital team. The hospital people took it seriously and made sure I was very safe but when you are one of 6 or 8 suicidal people it's rather hard for them to be as surprised as the people who know me well and know that I have fought off what is called passive suicidal thinking (wishing you could just die) many times and more serious active thoughts several times and I have never had a plan or intent. This happening I think shows nothing but how much worse things are right now. What is hardest for me is accepting that a major change has happened. Some of it physical as it is likely my brain chemistry has reached a new level of messed up. It wasn't just accepting that I was not going back to work that I struggled with in the hospital, it was knowing that this is really happening. There was so long I assumed I'd get better simply because I always have, even against the odds several times. Knowing that it is time to accept that this time things aren't going back to normal has been very strange. I've tried to fight this so hard that nobody wanted to sit me down and say enough. Apparently everyone treating me has thought this and it seems were a bit afraid of bringing it up. If Dr. Mind was thinking this several months ago then it must have been pretty clear for a long time because I know that none of my doctors would think of or bring up this idea unless they were sure and he was asking Dr. Brain what she thought then. And my acceptance of it all has a great deal to do with knowing that this is the long-term insurance that I need to be using if there is a question of my not being able to work as this insurance lets me keep my house, car, etc.

I know what a strong (HUGE) work ethic you have. I saw too how you always pushed through, and did a good job, no matter what was going on. I've also seen you so very stressed about their opinion of you, sick days, scheduling, and wondering if you had a job to come back to. Working 40-50-60 hour weeks is hard on anyone, let alone you who have gone through an INCREDIBLE year(+) of horrible. Is it not a bit of relief to not need to worry and stress about it now? Isn't it a relief to get yourself back on a decent sleep schedule without worrying about getting up for/being rested enoug for work?

Yes it is a relief. We'll see what Dr. Brain says tomorrow but as I said my impression from her is that she is in absolutely no hurry to send me back. Everyone agrees completely that I cannot do the job I've had. What they don't know is that the changes to Medicare mean doing that job was getting harder and would be extremely difficult even with the level of function I had in the spring. And I'm tired of some of it. I'm so tired of things like a patient complaining about me a year after whatever her complaint was occurred, making me unable to prove that I am pretty sure she had me mixed up with someone else because I don't remember anything about any issues with her visits and I only saw her maybe 4 times. I truly believe she had me confused with someone else but I can't prove it. I also am tired of constantly having to call doctors offices, of the enormous amount of documentation required to practice now, and these additional medicare required assessments that are essentially an eval. Truthfully there just wasn't a point that I was getting enough rest after some point last spring. Since those repeated full evaluations/justification of treatments started in April I think it's a pretty good sign that those were the last straw.

Today our city hit a record high of 50-some degrees so I took advantage of the weather and did some spray painting. While I was out on my deck spraying away, I thought so much about you. The thought that keeps sticking in my head is this NAMI(?) group you may join. You said you hesitated to go because you'll not learn anything new/you could teach it. Likely the reason it was suggested was for the interaction(?) ANYWAY - I was wondering if you are going to the group.

NAMI is the National Alliance for the Mentally Ill. It provides a lot of support and political advocacy for mentally adults and their families. (I think there is actually support for parents of kids with mental illness as well). I am taking the class. It actually was Dr. Mind who told me I'll probably be bored and that I could teach it, but he still wants me to go. So I will. Interaction is the goal and once I've taken this class I can go to a smaller support group.

The 50 degree weather arrived here today. Actually is was closer to 60 than 50. I went for a walk. Not as long as I'd have liked because I was up until 3 last night with a not quite full-blown panic attack. But I did walk up a pretty big hill and then back down it.

And then, I wonder if you may consider this thought: if you go and happen to be very bored with it, think about how YOU would facilitate the class. What information would you share? How would you do it? So now I've switched from mother hen mode to teacher mode. But I can just see you doing something like this IN THE FUTURE (mother hen is back), not now! So, it's maybe something to put in the wayyyyy back of your mind. Maybe.

We'll see. My understanding from having had people talk to us about NAMI in the hospital leaves me unsure that it is going to mesh completely with some of my beliefs. I think that they use a more generalized approach than I think works. However right now I need support anywhere we can find it.

You see, I believe there is a silver lining for you. I believe that you have SO MUCH to offer. I believe that God is working His Plan for you. I believe in you.

Thank you. I know this feels right and I never thought that would happen. Which makes me feel more sure.

Relief. Time to heal - time that you've needed for over a year finally is here! It's such a relief to me. I hope it is for you too!

I will admit to wondering what would have happened if I'd just taken a few weeks off last winter or if I'd had my surgery sooner. But those decisions are past and at this point I'm doing what I can do. Relief is probably stronger than I have managed yet aside from feeling relieved that this horrible decision finally is made, assuming Dr. Brain agrees. While there isn't a lot of doubt this is necessary it is still hard to decide. It does help to know that while the doctors seem to agree that this is time they alway seem willing to support whatever I want. It is good to have this choice. I just wish I had known this would/could happen. I thought after so many years that I was well aware of what my particular disease process was. Being wrong about that is hard as I'd never considered this happening at this stage.

But it has and until I don't get so tired so easily I can't imagine considering anything else. And if/when we know for sure than less stress is good for me it will be hard to know that. But I'm willing to work on accepting that which is huge.

Now I just need to see what Dr. Brain says tomorrow.

strange

2012-01-05T20:10:00.002-05:00

I saw Dr. Mind today. I told him that at some point we'll all need to discuss return to work versus long term disability because I have benefits right now that are extremely good and if they feel I am not going to succeed for a long time we'll need to figure out the benefit versus cost. He asked me where that came from. I told him Dr. Brain had mentioned it in the hospital and that I know that I landed this way partially because working is very hard and stressful and that I don't know that I can return to doing it well or proficiently enough for long enough. I don't think I can manage a more-than-8-hours per day job anymore and I don't think OT is ever going to be less than that for me (partially this is because we have such a shortage of OTs in Ohio making it really hard to have a job doing only 1 position, partly this is because it is nearly impossible for me to document while treating, and partly it is because with any job I have there will be a minimum of 45 minutes of commuting). There's also the issue where my blood sugar levels (more below) make me very nervous about the only 2 back-up meds I have. And there is a point where my lithium levels are likely to be an ongoing issue that may require monitoring very frequently forever as the line between toxic and working is so thin for me and I do not feel bad when it is too high until I am hallucinating which is not ideal. I believe that I've been told that being on lithium will require extensive monitoring long-term, especially now that my level is on the high side (even though I'm on the same dose I've been on for years). And coming down with the level won't be an option for a very long time because lithium is the only drug that is known to improve suicidal thinking. Anyway, there is a lot besides the simple fact that I have been so very sick for so long, sicker than I have been in all the years I've lived with this which is saying a lot, that says I may be better off on disability. I know that. I know how different I feel than I used to feel even at my sickest. Admitting that is part of what required hospitalization, but after saying several times aloud that I think my career has ended at least for now it's easier. And Dr. Brain's approach was to gently suggest that I should know that sometimes people come off of long-term disability as new meds change how they are doing. I think this means she thinks it is time for me to do that.

So we talked about this a bit and I continued to talk about it with my new knowledge and understanding. I think Dr. Mind and I have talked about this a little but very abstractly. After he was sure I knew what I was saying and had thought about this he told me that he brought the idea up to Dr. Brain several months ago. He said she didn't answer then but that he's been concerned about my trying to keep working after all the changes in my condition in the last year or so. It seems he thinks I don't handle stress as well as I used to. Which I don't. It's hard to explain but I seem to be overwhelmed so easily. He said something about we managed to save things 4 years ago when this came up for the first time in earnest rather than as an abstract time in the future. I guess that's true since that was when Seroquel magically worked against the odds. And perhaps I need to hang on to that, I worked 4.5 years longer than seemed likely. And hopefully another med someday will change things. I've had an amazing run that I should never have had thanks mainly to Drs. Brain, Mind, and Body (or Brind if you combine the first 2 as I did). I may feel different later but for right now I know only that the plan is a long period of time off and that I have been through too much in the last year. I think that knowing my history and belief system that if I have reached the point where I was seriously suicidal because it was so hard to face that work was too hard that perhaps working is not just too hard now. I also would like to know that there are med alternatives that do not have a substantial risk of hurting my blood sugar before I try to do something as stressful as work. Lithium and Seroquel have done most to all of what they can do to save me from myself. Seroquel can go up some but not much and lithium is currently maxed out until my levels drop. So I guess I've even made a decision that is very tentative as there is a small chance I'll get much, much better still, but the decision from now on has to be related to "can I do this without damaging my health or becoming suicidal?"

Blood sugar....I heard from Dr. Body. He told me that he wants me to not worry about it, that it may be up due to stress and having been hospitalized and that it probably is still in a safety zone for now. He wants to wait 2 months and then do some bloodwork but there isn't any need to rush or be afraid yet. He knows how sick I've been and basically thinks I need to recover from that and then we'll deal with this if needed which he feels is unlikely. I am so glad for that. Hopefully in 2 months I can start losing weight and will feel better in general. I am so grateful to him for telling me that there is not pressure yet because I really can't deal with this right now. I really don't even care if he would have done more if I hadn't just been through so much because I truly can't imagine trying to handle this yet.

I smiled with Dr. Mind today. I'm getting the impression I haven't done that in the last month or two. It was something completely stupid; basically he skillfully backed me into a corner and I smiled instead of answering because it was skillfully done and I had no answer. It's good to know that I still can smile. It's also sad to realize how little I've smiled in the last few months. We also talked a good bit about what I am doing and not doing and how easily I get to be extremely tired. Apparently that's normal and he's ok with what I'm doing which is a good bit of sleeping and limiting naps after 2 pm. So far my sleep patterns are gradually getting back in place and I'm getting consistent at falling asleep on my own and sleeping 8-10 hours. That is acceptable which is good because when I am sleeping and not having nightmares I am sleeping hard. It takes very little for me to overdo and I still worn out from going to the grocery the other day. It took forever because I didn't think about a list and so I had to go to every aisle, some a few times as I tried to figure out everything I needed. Then yesterday the only thing I really did was make a huge thing of soup but that took the energy I had left.

Anyway, I need to find some supper. I see soup for meal #2 today in my future because nothing that I have frozen sounds very good. Good thing I have a LOT of vegetable soup.

Catching up

2012-01-04T15:07:00.002-05:00

Thanks for the concerned comments/emails. I just haven't had the energy to post. I am fine, just not used to much noise or stress and getting back into life involves both. I just get very tired quickly and have been resting. We had Christmas Monday. It was weird but presents were enjoyed, food was enjoyed and besides getting quite tired and having a few times I had to walk away from my mother because she was telling me what I could and couldn't say which infuriates me, and once from my sister who was doing a variation of the same thing. But aside from those things and my brother struggling with his wife leaving him a year ago exactly and having an argument on the phone with her which made him sad it went well. My niece got to play in snow for the first time.

I finally found out what my mother has REALLY been sniping about. She got it in her head that if I am on disability that she should keep working to be there if I need help. This is not something I had said or thought and certainly don't want or expect her to do.

Yesterday I saw Dr. Mind. He convinced me to take a class though NAMI. I was hesitant to sign up for it because it is more for people knew at this and I'm not. I'm new at getting as sick as I did, but not at the whole thing. He said I need to take it to meet people even though I know enough and have experience enough to teach the class. So hopefully I meet someone or this will be a long 20 hours. Taking the class lets me into a smaller support group that meets where I go to counseling and which is on a better night that Sunday which is the big group.

It's funny everyone brought up soup when I was first feeling ready to try. I really haven't cooked much of anything in a very long time. This meant that I didn't have ingredients. I had 2 first choices to make. I forgot an ingredient for one of them so my first soup is cooking in the crockpot right now. It's a good, diabetic diet appropriate vegetable soup. I'm not on a diet yet and am not really following one yet, I'm just trying to do better than I was. I have too much going on to leap onto a diet and I also haven't heard from Dr. Body whether he wants any labs done. If he does I'd rather have my normal diet tested than modifying it too much. I suppose he could be off this week since normally I'd hear from him by now and the holiday did make taking a week off attractive. I hope I hear today or early tomorrow because I need to have them drawn in the morning. Not that it matters; I'm sure I'll be going for labs next week too.

Tomorrow has all sorts of fun stuff planned. I bought a fruit tray yesterday that the fruit was pure alcohol. Because fruit trays are expensive I need to take it back. Hopefully I'll get my money back. I'm not sure I have ever returned something to the grocery before. I also get blood drawn and see Dr. Mind. Hopefully that can be accomplished without another review of rules and things I should not do. I added a tiny bit of klonopin after my last post. I only have a few pills and I checked with Dr. Brain. Until I added that part Dr. Mind was less than thrilled with me. I'm not used to rules like that. I'm used to being allowed to make small changes. While I know that for now that is not something I can do I am also not interested in pain keeping me from sleeping and if I have a way to help that I will, checking with Dr. Brain as I go. This is where the new stuff with Dr. Mind to keep me safe gets hard. I know that I have exactly no leeway right now but that feels so off because it's never been that way. I know that klonopin is really not something to mess with since it is the medication I was focused on during the suicidal period. But I don't have enough to do anything even if I wanted to, which I don't. The aftermath of my last 2 weeks is already getting old. I know why the rules are as they are but sometimes I feel like I'm being treated like a young child, not an adult. But that probably is because most adults don't need safe plans and assist to carry those out. Right now I do and I think it's like to be a very long time before that changes. It's also hard to go to counseling because I remember so little of recent months so talking about it is difficult. Dr. Mind said something about he probably should have pushed me harder to do some things differently (something like that) and I'm sure that includes talking more about the suicidal stuff and going to the hospital sooner. I am sure he felt he was in a corner because if he'd said I was suicidal I would have denied it. But I can't even be sure what he is referring to. Things are very blurry in my memory and I'm not sure that will ever change and I'm not sure that changing is that important since the memories probably would only hurt. I am however struggling with not remembering some of it because it is scary and so much is missing that I am quite sure I was much sicker for much longer than I ever realized. I think that things crumbled when I tried work and it didn't happen.

Tomorrow is the first time I need to fill a pill box with Dr. Mind letting me into my box. That's a very weird feeling.

Everyone gets in on this. My insurance had someone call me from the psychiatric nurses to ensure I was adjusting to home and was safe. It was weird because it wasn't expected. I hate going through am I suicidal with a random nurse who knows more than I would have thought. Even my insurance wants me to go to intensive outpatient. Too bad there aren't any programs around here that operate the way I need them to.

Hmm, can't think of anything else. The last 2 days were tiring but not overly interesting.

More when something interesting happens. I may not post every day 3 times a day anymore and while that's a change I am really fine if I don't post. It just takes a lot/all of my energy to get back into the swing of things. It's amazing how little energy I have. Friday I'm going to babysit my niece so I'm pretty sure that day will be light on posts as will Saturday when I have to go to see Dr. Brain. Both of those will be hard days. Hopefully good, but hard.

2012-01-03T22:48:00.001-05:00

Just wanted to let you all know that I'm fine, just very tired after a long family day Monday and seeing Dr. Mind and going to the grocery today. I will post for real on Wednesday.

Good

2012-01-01T14:48:00.000-05:00

Even before I was discharged from the hospital I had started working on the nightmare called sleep. Every night I would try to fall asleep without a sleeping pill. Every night it did not work. I've had only 1 sleeping pill since coming home (4 nights). Maybe 2. But regardless, not much. I've had to stay up pretty late most nights though. However I would rather be on an erratic sleep schedule that use sleeping pills too much since there aren't many good, safe choices and I seem to develop tolerance rather quickly (just to sleeping pills). But last night I did it. I forced myself to stay awake until midnight because people fire guns at midnight which has scared me out of a deep sleep before. By 11:57 I was barely awake. I checked the clock again at 12:02 and the next thing I knew it was morning.

Now I just have to do it again. And again. And I need my muscles in my neck, upper back and face to relax. I very sore because these muscles are so tight. I suspect this is because of not being on benzos after consistent use for many years. Not sure what will happen there since there isn't a great benzo option left that I'm not tolerant to and the antihistamines are causing pain but not much anxiety relief. At this point it takes the edge off at best. It is just not enough. It doesn't help the panic attacks, the very sore muscles, the tooth grinding, the falling asleep, the obsessive thoughts, or the feeling that the anxiety is taking over everything. Essentially this is saying the antihistamines do nothing. I think the hospital doctor does not like to use benzos on someone who is suicidal. In terms of enhancing safety by restricting what is available this makes sense, but I am not sure there is a lot of benefit when they have no choice but to send me home with tons of other not very safe medications that I am still routinely taking. But that's the only explanation for why he decided I couldn't have these meds. Dr. Brain is back to work this week and I am hoping that she is able to help. I see her this weekend so should get some relief then but I'm hoping she has something for me sooner than that. I don't like being sore all the time and it is causing (I think?) headaches too. Tonight I am going to have to start working on tolerating my bite plate again to help with the facial pain and headaches. But I desperately want the muscle relaxed, pain-free and anxiety-reduced night that I used to have routinely. I found that I had a few klonopin left and may decide to take one of them. It probably won't do much but trying it out lets me both see what happens in terms of klonopin's effectiveness but it also means that if it works at all I can have at least a break from the anxiety.

I've been waiting all day to see when my sister and her family were arriving at my mom's. I'd planned to go down there for "out of the house" time today. Oddly nobody has heard from my sister and she didn't answer when my mom tried to call her. This is making my mother cranky, listing all kinds of other things they might be wanting to do based on her assessment of the inconvience of this event. I keep pointing out that for most of my career I've worked Christmas eve, the day after Christmas, New Year's eve and New Year's and that nobody went nuts with this for me; in fact I spent a lot of time standing up for myself about needing to leave on time, etc. My mother cranky apparently means that she'll bring up everything I've done that she doesn't like if given time. I really wish she would just deal with Christmas had to change, it's not anyone's dream situation, glad to have me home, MOVE ON. She doesn't want me to talk about being sorry, yet she keeps pushing. We'll see how long that lasts before I lose my temper.

Anyway, not a lot more to say right now.

Dr. Google says....

2012-01-01T06:30:00.000-05:00

I decided I wanted to know something about my blood sugars before I'm going to hear from Dr. Body, which is Tuesday at the earliest. Mostly I wanted to know if he was going to be doing testing involving glucola because I wanted to line up arguments against that as I am not good with drinking bad tasting things without gagging and/or vomiting and I want nothing to lower my lithium level which could result in having to go through all the adjustment symptoms for longer than I already am. I really don't know what he will do but the 2 results I have are enough to diagnose impaired glucose tolerance, aka pre-diabetes. The high not-fasting level I had 3 years ago is another sign of this. This means time for a diabetic diet, exercise, and monitoring as I'm pretty certain to develop diabetes in the next few years. The good thing is that my sugars normalized rapidly with weight loss the last time and there isn't a reason to be too concerned now. Because I am high risk and on high risk meds more testing may be indicated and I may be pre-emptively treated with metformin as Jean Grey is. However there won't be a need to rush into that which is good since one medication upsetting my digestive tract is plenty. Metformin, as I think about it, is probably not an option for me because of the likeliehood of diarrhea which could screw up my lithium levels. My lithium levels have the potential to drive me batty but at the moment having good levels I can tolerate is key.

So it's not going to be all bad. It's also probably not the best thing that ever happened to me, although I'd rather know and monitor than not know and be surprised with full-blown diabetes.

Oh, and Michal asked about type II diabetes being mostly lifestyle. I don't think you can pin any illness to 100% lifestyle. As a healthcare professional that sets my nerves on edge as I don't think you can ever be so certain that you are blaming someone for causing their own disease when that guilt is not likely to help someone manage the illness. The other issue with saying it is 100% lifestyle is that sometimes people without risk factors get it. I see that sometimes; I'm thinking of one woman who walked down and up the mountain side that is her driveway every day for 35 years, was underweight if anything, and was in her 90s. No clue how long she had been diabetic but I seriously doubt it was her "lifestyle". I mostly know that my family has a nasty habit of dying from diabetic complications and that my doctors watch me closely. Here's what WebMD says:

Anyone can get type 2 diabetes. However, those at highest risk for the disease are those who are obese or overweight, women who have had gestational diabetes, people with family members who have type 2 diabetes and people who have metabolic syndrome (a cluster of problems that include high cholesterol, high triglycerides, low good 'HDL' cholesterol and a high bad 'LDL' cholesterol, and high blood pressure). In addition, older people are more susceptible to developing the disease since aging makes the body less tolerant of sugars.
In addition, people who smoke, have inactive lifestyles, or have certain dietary patterns have an increased risk of developing type 2 diabetes.

In addition it is known that there is a connection between atypical antipsychotics (the typically used kind now; whoever named them atypical was not thinking of the future) and diabetes. Some of this is weight gain. Some isn't. So they monitor anyone on an atypical carefully. (This is another reason lifestyle doesn't work. I mean, sure taking that med is sort of a choice, but mostly it isn't. This is why I know that this 2 time result is abnormal for me; I typically am in the low 80s. I don't gain much if anything on Seroquel/with adjustments to it. My medication weight is from lithium and from meds I don't take anymore, mostly Depakote. Seroquel actually helped me to lose weight the last time because it let me come off Depakote and kept me mentally healthy enough to manage the diet. It appears the diet is now not optional. That will inevitably be hard at times because managing a diet and mood swings both may not be simple.

Hopefully things improve with weight loss and I don't ever have to think about diabetes again. Not likely but I'll dream.

Ok

2011-12-31T17:36:00.000-05:00

My cat is ok. My first guess was correct; the blisters are from liking and pulling out her hair. No treatment needed unless she doesn't leave it alone. Since I have yet to see her touch the area and only found it because I happened to pick her up with my finger in the right spot I think there's a good chance she'll be fine. I also know that she no longer can handle being left for 2 days at a time. I know she is just now starting to trust that I'm home for real and she just doesn't have the ability to put together gaps in her care anymore. She probably worried endlessly about who was going to feed her. And as my mother pointed out they've had me here with them nearly constantly for moths.

I survived my trip to the vet (it's 45 minutes each way) without issues. The cat I took in today lived with me in Michigan and got used to riding in the car every 6 months or so for trips back to Ohio (and it was two of the furthest possible points to reach, so it was a long trip). She actually really likes car trips. She could do without the vet though. Still, much better than the other, huge cat who is hard to get hold of.

What else? My blood sugar. To be clear, because my antipsychotic is a factor, as I talk about this (or please God as I don't have anything to talk about), if this is happening it is not because of the antipsychotic as a first or second cause. It often is but I've been watched so carefully since starting it and even more carefully since being on a high dose that I know other factors are more likely to be the trigger, if anything has triggered. My family history is so bad that a doctor before Dr. Body or even the heavier psych meds told me that I needed to be checked annually because I am unlikely to NOT become diabetic eventually. As a result and because I have been on risky meds for a long time now I get tested frequently. We've been even more careful since I developed the diabetes insipidus issue about 5 years ago (wow. That flew) because it can mask the symptoms of real diabetes (hence the use of diabetes in the name, confusing computers that don't have rare diagnoses listed for years). I have fasting sugars done a few times annually, non-fasting periodically, an A1C annually, free insulin this year, and I've had 3 years of knowing that I had a pretty high non-fasting sugar at just this time of year, leading to huge weight loss. In the last 6 months I haven't felt well enough to eat healthily or exercise and so I gained weight. And now much sugar is back up, more alarmingly to me because it is fasting that it is now an issue. Also diabetes would explain the headache and upset stomach that I've been fighting for the last while and blaming on lithium. I think it is still lithium but the hospital doctor thought it was too long. However, he has been warned by Dr. Brain about my weird metabolism of the magic salt but not seen it for himself so I'm not sure that he fully understands that "this isn't typical" is meaningless for me. My level should be much higher than it has been in nearly 6 years and the symptoms are consistent with being on a higher dose after toxicity. I'm hoping the sugar is just back to normal when retested. I am prepared for it not to be but equally prepared for it to improve dramatically. So the point was that the antipsychotic is about the 4th thing in line as the cause. If I am diabetic it may be sooner than it would have happened, but not far in age from when my uncles and now cousins were diagnosed. I do have to start losing weight. However right now that will be more by eliminating things I shouldn't eat from the house and replacing them with better as I get out more. I had meant to go to a store today until my mother mentioned how crazy it was yesterday evening because of people grabbing party supplies. I had forgotten the date.

I think I mentioned being very sad because I ordered a picture of my mom's cat who died as kind of a memorial and then it didn't turn out well. I actually got the picture while I was in the hospital and looked at it today. Turns out that at first glance it isn't right but if you look very long you find that from the right perspective it is actually really good. So I'm happy about that project and will give it to her tomorrow. I'm wanting to go down to maximize time with Anne and my sister. It all depends on panic attacks though.

I wish blogging or email counted for Dr. Mind. They don't. The purpose is getting out of the house every day and interacting. Which is important at this stage of recovery from wanting to die because it means being engaged in the world as well as having a chance or breaking any bad thought loops rather than just lying here staring at nothing and repeating the bad thoughts in my head. His reasoning is good. My panic attacks are a good reason to not go when I am not feeling well as until I have meds that help I am needing about 2 hours of effort to recover from each one.

Oh, and if I say something weird, consider if I might have thought I was being funny. I keep trying to make jokes and confusing people. Apparently I'm not there yet.

Have wonderful and safe New Years'.

Oh yeah, IOP the conclusion

2011-12-30T20:42:00.001-05:00

I forgot about this not being something that you know. Too much going on for me I guess. Anyway, the IOP won't be happening. The place I wanted to go just isn't right. The other choice is even further away than I thought when I realized it wasn't an option. It isn't at the actual hospital but at an off-campus second site that would be 95 minutes in normal traffic per Mapquest, meaning that snow and rush hour could make it 4 plus hours of driving daily. There are no other programs. So that means putting together something ourselves. To make it worse the NAMI meeting I wanted to go to requires having attended a class that doesn't sound particularly appropriate for my needs at this time (would have been great in 2002). Some of this is hard because I'm not doing this in the usual order. Usually by almost 10 years after diagnosis you are not trying to adjust to stability that has imploded and unfortunately most people have experienced the degree of suicidalness I have just come through before. So unless one of the Drs. feels I need to attend the course and review skills I've had for a long time there isn't at all what I need. There is regular support group on Sunday nights; I'm not sure that it is ideal because keeping me out late (and I think this would be going both directions in the dark) isn't great. It's sort of Dr. Mind's call at this point. I'm taking a break for hefty decisions for a while.

Ideally the hospital social worker would be helping. However she doesn't like me much for some reason (this isn't my first problem with her) and she just avoids helping me with anything. They initially offered to have her get in touch with me and try to help but I didn't want to deal with her either not calling me or not being helpful; I needed to ideally be enrolled in the program and knowing what I was doing; she would have not gotten information at this point, just referred me and then the same thing that did happen would have; I would have had questions, called them, and found out that the referral wasn't appropriate.

The talk to someone thing is to get me out of the house and interacting. I'm supposed to try to leave daily. I think. But that's going to depend on things like today did with panic attacks. Until I have some anxiety meds that I can take more of if I become extremely anxious I am kind of stuck fighting those the best I can with deep breathing and decreased stimulation. The trick is without specific destinations I start to feel panicky. The next few days I'll be meeting this goal as tomorrow is the vet (the thing seems to be healing but I can't get a very good look, I don't know what the cause is so don't know what it is (burn vs. other injury), and for all I know it is a gross infection from chewing on herself while I wasn't here. She also needs checked for anything else and that is not a one woman job. If it is a burn I want to know my vet's position on her heating pad. I thoroughly messed with it and it's warm, not hot, seems to be heating evenly and there is no indication it could burn her, particularly not rapidly enough to hurt.) and then the next 2 days I'll be at my mom's for time with my sister's family and then "Christmas". And Tuesday is Dr. Mind day as it Thursday. Saturday is Dr. Brain day. So I only have to do something Wednesday and Friday. Or I try to talk him into letting me off the hook. Which is unlikely since isolating helped me get into this mess and isolating is dangerous. The talking thing means just talking to clerks in the store, librarians, whatever.

My poor injured darling is screaming at me (trust me) to feed her so I guess I should since I have, according to her, caused grievous harm to her need to eat constantly by being away. She wants to pick everything right now-what, when, and how much she eats. Whatever cat.

There's another layer to all this by the way. My mother is being pretty obnoxious about guilt and the moving of Christmas. Things like saying my niece may not enjoy it now. Things that HURT. Dr. Mind was livid about this last night. I've been pushing it away because it hurts but I don't know what to do about it. He wants me to say something back, including offering a referral to counseling of her own. While I don't think this happening I do appreciate that he was mad for me because I know it's not appropriate but I have way too much on my plate. I need him to take her on for me. (If I brought her in he would, gently and kindly and then she'd leave believing him to be on her side of everything. Forever.)

And the cat is DYING she says so I must run before she is just simply a pile of hair.

Fantastic

2011-12-30T19:44:00.000-05:00

took the time to check out my labs from the hospital today. Good thing I did. I had 2 fasting blood sugars taken. Both were high. Like I may have developed diabetes thanks to weight gain high. My family history is not good with diabetes. At least 3/4 of my grandmother's children who lived to adulthood died from it (my father is the only one still alive and we don't know where or how he is). My cousins who are older are developing it. And my mom's mother had it severely and died from complications of it last summer. My fasting sugars have always been good. Typically I have an A1C (test of sugar metabolism going back 3 months) done annually but this year I had a free insulin instead which apparently more accurate and it was normal. However that was 9 months and a lot of weight ago. So I have emailed Dr. Body and expect to have more blood taken when I have my next lithium level. I don't know how to handle this. Those who were around about 3 years ago may remember me working very hard on a diet for those at high risk for type II diabetes and losing about 60 lbs. Those stayed gone until this year when 25 or so crapt back on as I've eaten a very high carb/not balanced diet.

My vitamin D has also dipped below normal, despite being on supplementation. I'd accidentally started taking more than I used to anyway (forgot it was in my multivitamin) so hopefully that will go back up with that, but it can explain some of the feeling crappy part of the last few months as it can make you feel tired. In fact I remember being amazed when it was first found and treatment started and I suddenly felt so much better with my levels normal. At that time the levels were done differently (I think they actually changed the lowest number they want to see) and my level was very, very low. This surprised nobody since I hadn't been able to be outside in the sun for much of the year in many years because of the medications. Supplementation got it back up and it had stayed, to my knowledge, at normal.

Can I say that this is very not fair? If it is diabetes and all signs point to the weight gain as the reasonable cause of onset then presumably getting the weight off will help. Hard to know how much between the family history and Seroquel increasing my risk level.

I am really missing anxiety meds today. The antihistamine only goes so far. This is past it.

My poor kitty

2011-12-30T16:43:00.003-05:00

My cats stayed home alone while I was in the hospital.. My mother fed them every other day and tried to give them so attention. But it was Christmas and so there wasn't a lot of time. Since I got home they've been very clingy; one of them still hasn't let me out of his sight except when I left yesterday to see Dr. Mind. My other cat is, as I've mentioned before, quite old and not in the best health and she also has periods of being very confused. My being gone must have been very hard on her as she (I'm hoping as the other option is that her electric bed warmer burned her and that is guilt I can't stand although I think that is the deal now that I think of it). Crap. I just discovered a hairless, blistered area on her belly. So we're going to the vet tomorrow and I feel so bad, especially now that I'm sure she burned herself which would mean taking away the head that keeps her comfortable. I may try to protect her with covering it, but I can't believe it hurt her; she's had the thing for years and while she uses it more now it's not like she is unable to change positions. I probably need to check her for other injuries but right now she is so peaceful sleeping on me that it will wait. This burn thing looks like it is relatively healed so who knows how long it's been there. I only found it because I grabbed at it when picking her up when she wanted in the bed where I've been fighting a panic attack for several hours. Bleck.

It's not easy being green

2011-12-30T14:27:00.002-05:00

I fell asleep on my own last night! I can't remember how long it has been since I did that except for the night after I didn't sleep because of suicide watch in the hospital. I was up late but it didn't seem like good idea to take a sleeping pill because I was feeling on the verge of a panic attack with it already trying to start and my pulse very elevated. But the thing that is truly amazing is I'm fighting another panic attack right now and have discovered that all it takes it to think of making a phone call. All I am supposed to do for counseling is to talk to someone daily. I was going to cover that for today with phone calls about a few maybe if I'm fortunate support/therapy group possibilities. Turns out that I can look up stuff (which is what I was doing last night when I got panicky) but trying to handle this is enough to cause panic. So I won't and will try again Tuesday. I have something in place for Monday and Thursday (Dr. Mind) and Wednesday (NAMI-National Alliance for the Mentally Ill). Ideally I'll get something for the other 2 days or better yet a 2nd program for one of those 3 days to save trips. It's not looking good.

I can't believe phone calls are making my panicky. That would make my job impossible all by itself.

One thing that I'm getting verified over and over is that this will not be easy. In the hospital I didn't think much about it because they say go to group and I go. That was the advantage of the outpatient programming I wanted to do (basically 4 hours of various types of group therapy every day; a step down from inpatient). Once you're there it is easy to get the treatment. But trying to put it together myself is anxiety inducing.

I hate feeling like this. My heart feels like I ran 7 miles. Instead my major achievement of the day is taking my AM meds.

Not bad overall

2011-12-29T22:26:00.000-05:00

One good thing about having talked to Dr. Mind 2 times during the last 10 days is that he knows how vulnerable I'm feeling and how fearful I am of having someone scold me or be angry for all of this and how embarassed I am and ashamed of my behavior in doing everything I'd been taught to not do. So he treated me as the delicate flower I am at the moment, mostly. Of course this was while he packed away every sharp thing in my house. And he made a point that nothing he is doing with helping keep either meds or sharp things away from me will stop me if I choose to hurt myself. Oddly it's not something I'd thought about. I knew it factually but either I am done with that part of my life and came home feeling that the safety measures are comforting (if annoying) and; I know they will be effective. But he's right. I could replace everything I gave him plus more. After a week of repeatedly saying things like "I'm here because I lied" "I didn't know how to say what I felt so I hid it" "I wish I had died. I want to die still.", or being in a group the day after Christmas (ie when the only reason you're on the psych unit is you want to die and are actively being stopped) and asked for everyone who was there because they were suicidal to raise their hands. Every hand in the room went up. Mine included. And I was a lot further down the path to action that many or most of them. I can't explain how painful I found it to find myself saying many times, saying it because I needed to hear myself say it, that I wanted to die and more than that wanted to cause it myself. Saying the words "I had a plan" was so shocking they kept echoing in my head. That was followed by "I had a plan and I meant to carry it out the next time it hurt too much". That still makes me a bit sick. But not as sick as "You know Jen if you really wanted to do this nothing I do would stop it". Because it is true. Because I managed to fool him before by lying and there is not much he could do to make it stop. He's right. This isn't something he can protect me from. He can try, and he can decrease my ability to do something impulsive, but I can easily beat the system if I want to. I don't. I hope I never do again. i think if this every happens again it will be easier for me to get help; I know what those words sound like now. I know pretty much the whole process of dealing with it and I know that my life would have been a lot less painful if I had chosen to get help weeks ago.

I'm learning that this takes a certain chunk of your life away. Late fall/early winter Dec. 2011 is lost now. It is so entangled with the desire to die that I can't even start to sort it out. That part of my life was overtaken by suicide. I don't really want to remember. But this did not happen without a price, a price much lower than it could have been.

That was a very quiet and solemn session. We talked a great deal. In fact Dr. Mind thought the time was up and instead we had 15 minutes left. There was the strong point made at the start, followed by lighter talk and the IOP thing and then back into harder stuff. The last 15 minutes he was reading the typed and edited to eliminate what I had for dinner version of my notebooks from the hospital. I wrote about 150 pages during that time and writing helped me work through the shame and horror I felt, take steps along the path to getting help and ending the denial that I was in big, horrible trouble, and the analysis of how I got to be in that position. With enough time I was able to once again speak aloud of some of what I've thought and felt, and having this in his hands gives him the ability to know what I thought, how I got to today from a week ago, and lets him see things I could never say. I also have been able to use this to point out to him ways in which I know now I had been lying/hiding/avoiding telling him and signs that this is what is going on inside. Because I don't remember much of our last few sessions I am telling him some of this and then finding out I was using other words. I also was able to share with him that my saying I am feeling numb is a danger sign because it seems to be code for I feel so helpless that I have no feelings because I have blocked them off. We also talked a bit about the grieving process that I have started for my life before these last 6 months.

I'm actually feeling a bit sleepy so I'm going to go and see if I can sleep. Probably not but I like to try when a chance arises. It wasn't until today that I realized WHY my anxiety meds were taken away. Duh. If that is what I want to kill myself with why would they give me more? I'm on antihistamines now and had to ask for those. They aren't ideal but they help except at night when I think I need more or something else. I want to have something so I don't need sleeping pills nightly. I see Dr. Brain next week. So we'll see then.

Where things are

2011-12-29T12:26:00.000-05:00

Yesterday was frustrating. I'm sure I've written at some point with past hospitalizations about my frustration with the social worker who very clearly does not like me. Well, this time I tried to get ahead. I asked her my 2nd day there to come see me for a couple minutes. She stopped and told me she was out of time but "first thing Thursday". Fine. Thursday came and went and she never came to see me. She was there, she saw nearly everyone else, but not me. I knew this Tuesday would be likely to be my last chance and I still knew nothing about the IOP program that another social worker had recommended that I attend. So I asked her to come talk to me. She said she would and that she was working on my discharge stuff. I told her I had specific ideas about when I would start IOP and also that I wouldn't be available after 4 because I had a phone call with Dr. Mind. She never came.

Yesterday we discovered she hadn't started my discharge. A social work student came and then later returned to tell me they had no information on the program I wanted to go to and that they would not be able to refer me. I was very upset and pulled the OT aside and talked to her. She was kind and efficient and she had heard me ask the social worker to come talk to me. So she and the nurse found a way to refer me. When I was signing paperwork I was told I had to start the next day. I called the place and told them why I wasn't able to start today, etc. They called back and told me if I wanted the hospital referral to work I had to start today but could do a psychiatrist referral next week and start then. However I would not be allowed to see Drs. Mind or Brain. If I self-pay I can sort of lie and do it but it would still be "a conflict of interest". I assume for them as it wouldn't be for me and Cleveland Clinic does their intensive outpatient completely differently. Their program also is not the same structured thing that Cleveland Clinic runs; they anticipate a 1-2 week use of the program although some people do stay longer. Cleveland Clinic runs for 5 weeks for everyone, making sure everyone get the same skill set. For one thing I am not giving up my doctors; no way would that be good for me. For another this sounds more like babysitting during the early phases of recovery than what I want. But I should have known this Tuesday at the LATEST so I could have decided and had help finding something else. Instead I am searching for a program. There's another one in the area but it would be 75+ minutes of driving each way and that is too far for 5 days/week. And again, I should have have help with contacting them but I didn't so I will have to do that myself if Dr. Mind thinks I need to take on the drive.

So this made me totally stressed and upset and then I had to fill pill boxes, throw out unsafe meds (I threw out 2 cups of pills that were unsafe to have around, plus several bottles that I wasn't really worried about but didn't need either). (By the way, if you ever have to dispose of pills the best way to do it to mix them into clay kitty litter and water. That keeps someone from finding them and steal them whole. Trick courtesy of hospice.) So I did that and then locked up both the meds I will only have access to by bringing the pill box to Dr. Mind's office where the key is and the ones that are safer plus 2 weeks of pill boxes are in a combination lock box with the thought the combination and my shaky hands will slow me down enough to think in an emergency. My sharps are gathered (and it's scary how many razor blades I could find in this house) and in a box on my porch. I wasn't supposed to have them sitting in the living room so I put them out there so I didn't have to go back out to the car. I figured someone stealing them would be a favor.

And that's about it from the other side of that wet, sad land in which the rainbow grows.

Home

2011-12-28T20:23:00.002-05:00

I am home. It has been a long, stressful day with the social worker screwing things up with my going to intensive outpatient. It looks as if that may be impossible. I'll explain later. I am in the midst of 'suicide-proofing" my home and need to go back to that. More later or tomorrow, just wanted to say hi from my own home. Also, I have never liked the paint color in my bedroom. I'd picked one and my mom had to go get it and make sure it flowed with the other rooms and what I'd chosen would not work in here. So she picked, as I'd told her to and it was always not the mild light peach I wanted. I never realized though until tonight that this color actually agitates me. It is, I suppose, possible that merely being in this room is agitating after what has been going on, but I really HAVE to get this painted. Hate it SO MUCH. But home is so peaceful and wonderful and there is an orange cat with both paws on my leg and 45 minutes of continual purring since I sat down for a break.

2011-12-27T21:04:00.001-05:00

PS. I want these annoying plastic bracelets off.

2011-12-27T21:03:00.001-05:00

1) I want to go home!

2) Dr. Mind and I have a safety plan worked out.

3) I am very shaky tonight and dropped 2 toothbrushes in 20 minutes. Yay. I really hope this is not related in any way to my lithium levels.

4) Thank God for laxatives. My belly just dropped inches and I feel sooooooo much better.

5) I hate TV even though I keep watching it.

2011-12-27T15:59:00.001-05:00

I can't remember what I posted last. I got a very bad headache and upset stomach yesterday evening that didn't go away until noon. My lithium level is being checked shortly and then if I'm still doing well tomorrow and my level is ok then I'll be leaving I think. Aside from this snow storm....I'm waiting for the social worker to not come and talk to me about the intensive outpatient program (IOP, get used to it) I'll be doing. This is funny since I asked her to please do so before setting it up so I can tell her when I want to start and get some information. Of course I'm still waiting for her to come see me last Tuesday AND last Thursday too. Oh well.

Today I'm working on a safety plan, including destroying a lot of medications and finding a way to safeguard the others. I'm hoping that Dr. Mind will keep a lockbox of them for me or that he will keep the key to the lockbox and I'll carry it back and forth. I have an email in to Dr. Brain about how much of most meds I can safely keep. When I get home I will need to sort and toss a lot of stuff that isn't safe and then fill pill boxes for a month or even 2 so that I don't have to do that at Dr. Mind's, assuming he's willing to store the stuff I can't have at home in large quantities. I'll just add things if they change; I expect a few things to when I get out. For some reason my doctor here doesn't want me on much anxiety medication. The antidepressant I tried for anxiety did NOT work (couldn't dose adjust and we think it caused mania).

I have time to talk to Dr. Mind here shortly. Next time I will SEE him. I'm going to ask to leave tomorrow if it is remotely possible so that I can handle the med thing before I see him rather than after a hard hour and a 60 minute drive after the 60 minutes (plus time for all this SNOW all of a sudden) to his office. Plus a stock for a lock box.

Anyway gonna go let me mom know her days of catsitting are limited.

2011-12-26T09:26:00.001-05:00

Last night my roommate was being inappropriate with her boyfriend. I had no idea what to do because it's so small up here and you don't want enemies. So I didn't tell the nurse and was going to try to deal with it today. Then I was going to ask Dr. Brain to help. But I managed to handle it and am moving to a new room today with no way she'll know why. The nurse said she wished I'd said something then so they could stop it but seemed to see my dilemma. I sort of got the impression that she has had complaints before which wouldn't surprise me because it happened when I was here before and lived next door to her.

Cute. I just heard a nurse try to find someone and wander off mumbling "she's the black lady." Great.

And for now I shall go because I don't like this being visible.

2011-12-25T15:51:00.001-05:00

Merry Christmas. Those words are meant but are still very weird to be saying from here.

I saw Dr. Brain today. She isn't mad at me and doesn't hate me or want to get rid of me which I had feared. I'd actually gotten rather freaked out about this. When I cried she hugged me for a long time. She made several good changes: d/c a med that was started when I came in that I don't think is doing what it should be; increased the frequency of my anxiety meds; increased the dose of my constipation meds (yay, they were going to make me take milk of magnesia and that would be likely to make me sick which would throw my lithium levels); gave me PRN sleeping meds since I've not been able to sleep the last 2 nights and they had to request meds for me in the middle of the night; and ordered a lithium level I think tomorrow to see what is happening. We talked about my feeling right now that I don't want to think/don't seem able to think of plans past the intensive outpatient treatment I'll do for about a month and she agrees that I have so far to go and need a lot of treatment including probably months more of twice weekly with Dr. Mind. She agrees with my decision about leaving my job, just accepting time on long term disability is needed to recover and that it's ok to look no further right now than getting to the end of intensive outpatient. She also agrees that it is time to do everything I can to get my house on the market and move closer to my mom. This will take a while but it is another of those need to be done things. I need to work in the city where Dr. Mind is so that I can do twice weekly sessions and possibly a NAMI group as well. I still don't know how long I'm staying; she's back tomorrow and I'll try to get some idea. However it's not really her decision so I don't know; I think she'll be able to give an estimate at least. I need some idea because if it's not by the end of the week I need to have mom bring checks up to sign and so I can pay some bills. I think they are going to keep me until they are sure I'm well. I just really want to be home by Thursday night. Maybe I can talk them into letting me go that day and see Rick on the way home, then I can manage the financial stuff when the bank is still open on Friday. Time is really confusing with the holidays and a lack of frame of reference.

Otherwise "holiday cocktail" is aka fruit cocktail, hospital prime rib?roast? is very hard to cut with flimsy plastic utensils and my mom is a better cook than the hospital. I have a new roommate so my days of being alone are over.

And I am not winning this battle to stay awake. It's too late to nap with the insomnia but my increased anxiety med really is making me groggy this afternoon. It also so far is helping the mania so that's good.

Oh, and my suicidal thinking is down to "not much" and I can READ. I haven't been able to really read in months.

Things are improving.

2011-12-24T20:50:00.001-05:00

Doing ok. Nausea better. Cried a bit today which I've not done much of. I have rested a lot, colored (boring), played 2 games of Sorry, and worried a lot about what "holiday cocktail" and hospital version of "prime rib" will be like.

Have good Christmases wherever you are!

2011-12-24T13:51:00.001-05:00

Today is probably going to be a pretty quiet day for me. I'm feeling sick from lithium and was up until 2:30 AM. I'm hanging out in my room and trying to not move much. Exact opposite of my last admission.

2011-12-23T17:58:00.001-05:00

Starting to feel manic. Not good.....Need to stay in the MIDDLE. (need to FIND the middle).

I opened up a LOT today both with my nurse and in group. I talked about how lying has nearly caused me to harm myself and how I lied to everyone in my life to get there. I also realized that the lying started to get bad when confused on lithium and so then it grew out of control.

Now to stop lying.

2011-12-23T12:54:00.001-05:00

Brief explanation: Michal asked about my statement about making it this long by grace. What I mean is that I have been pretty seriously (is there any other kind?) suicidal for months now and I did everything that I'm not supposed to do. I didn't tell anyone that this felt more serious than the harmless but annoying "I wish I was dead" thinking I had been having for so long. But after the lithium toxicity I started thinking about ways to stop living if I couldn't handle it anymore. I wanted I guess insurance is the word that I was going to have a way to stop the cycling if nobody else could. By the time I got here I was sitting in my room thinking about how different things could hurt me. That's when I told on myself. But I've been living in a very, very dangerous situation for a long time now and I was very, very stupid to do that. I have various excuses but the truth is that I was embarrassed and didn't want to tell anyone and I didn't want to have the only way I felt was sure out of this situation stopped.

Now I am in a much safer place but things could have been so much worse and so dangerous. I have a very long way to go to recover from this one and to develop safety plans with Dr. Mind. I guess we also have to talk a lot about this until I am not so ashamed of thoughts I can't control.

2011-12-23T07:40:00.001-05:00

I feel much more raw today. I think my numb period is over. I think all the things I said last night to Dr. Mind made me have to feel again. It all feels much closer, and also much scarier as I realize what I've been doing these last weeks in lying to myself and to Dr. Mind. Only grace kept me alive. I'm trying hard to let the emotions stay, even if it means the dreaded crying. I'm also going to beg for a different form of anxiety med. because ativan doesn't make any difference. I am so tired today but it is tired versus I can't move because I'm under so much weight.

2011-12-22T20:12:00.001-05:00

I had a long, teary (finally, I cried hard) conversation with Dr. Mind on the phone tonight. It's not much fun to explain that you've been lying to people who you aren't to lie to (with the distinct disadvantage of lying to yourself making that harder) and put yourself in a bad place because of that. He was kind but obviously this can't go on again. There was so much going on that I have to process, but I have now spoken with him and will again Tuesday either on the phone or in person.

Hopefully that's it for tonight. Gonna try to watch a movie and get a shower and then go to bed.

2011-12-22T18:29:00.001-05:00

B asked a question today that I wanted to explain. She was saying I seem depressed, not bipolar. There are a few things going on. One is that I am more depressed right now than usual. I have more depression always. The second is the type of bipolar that I have; I am both manic and depressed at any given time most of the time (I can be only at one plane). Right now I'm depressed but have manic spells later at night. Those seem to be responding to treatment but occur after I'm not able to use the computer here. However for the purposes of treatment right now depression is the main issue. Anxiety is anxiety but also sometimes anxiety is how mania expresses itself. And in certain mood states I feel more like posting than in others.

Make sense?

2011-12-22T12:22:00.001-05:00

Today I found out that I'm here indefinitely, can't have more anxiety meds at the moment and a nurse accused me of putting a pill in my pocket and so I got searched, I heard "and where is it in your room?" ("my stomach?") and I'm sure my room was carefully searched instead of the usual brief sweep. Fun stuff.

More later, gotta eat lunch.

2011-12-22T07:56:00.001-05:00

Well it turns out that 4 horrible hours of sleep one night and the emotional rollercoaster of the last few days combine to make me sleep. 8 hours with only 1 30 minute awake period. I really can't remember what I said yesterday; a social worker met with me and I finally cried a little. Not enough, but a little. Dr. Brain answered my email and didn't sound mad. I just still have some serious issues to work through. Today I'm going to ask when they anticipate going home. I don't want to but wondering isn't good either.

breakfast...

2011-12-21T16:15:00.001-05:00

OK, so those who remembered the last time I was here there was a nurse who drove me nuts. She is my nurse tonight. Please pray that goes ok.

Otherwise we did have a group; unfortunately the topic rotation landed on the same one I did last time in this group. But it was something.

Have I told you that my niece has pronounced herself a "toddler"? I don't have a baby anymore.

2011-12-21T11:57:00.001-05:00

Please tell me which anonymous you are. 2 anon, both on the West Coast and I can't see the blog to figure out who you are. Whoever is whapping their head, stop it! Thanks for sharing your caring though.

2011-12-21T11:55:00.001-05:00

I talked to the dr. I am allowed to close my door. That was what I meant by staring; I was on 15 minute must fully see me checks until they decided I am not a danger to myself. I don't think any meds are being changed today, just to see if I can benefit from what I started yesterday. He is going to arrange a proper lithium level be done and I should get to call Dr. Mind tomorrow afternoon. He said what I wrote is typically what people are saying before they come. I explained I didn't think about it in the right way until I was here and it didn't come together until yesterday. I am probably going to be going to an outpatient group daily for a month or so after I leave here.

Today's bad thing is that I came here for groups, help and things to do. Instead the person who does group is not here and so we have nothing. Some groups happen but today not one is on the schedule. So in many ways this is being in the hospital for the world's longest weekend, which makes me feel babysat but is missing something huge. I know that it may be hard to have someone fill in but every OT could do something meaning we could have an occasional group if they worked at it. I refuse to think nobody can do anything with us. I'm very disappointed by this. I am up, dressed, and occasionally talking to people but not like I needed. The doctor is lecturing me about needing groups etc. and yet they are providing none. Fun.

I still feel guilty, like my having my breakdown now may be some behavior related to Dr. Brain being off as opposed to what it really is which is I reached the end of my rope, moved to the place that they felt unsafe and now am coping with that. I have never felt like this before; it's just I'm overwhelmed and it feels like nothing really works with meds. I did not ask how long; he just said he'd see me daily through this.

Anyway, I should finish up on the computer. Lunch is soon.

2011-12-21T08:41:00.001-05:00

Next up: I have a tough day ahead with a big discussion with my doctor I'm sure and more being stared at and I am not excited. There haven't been groups thus far in the morning. I think the OT is on vacation. Please pray for lots to do besides color. There are 2 groups pending but one is nutrition (boring) and the other is sometimes good/sometimes not good. It's also going to be chaotic around here as numerous people are leaving. I'm glad as it will get quieter but it makes for a weird day. I'm arguing with someone about TV volume; our room is close to the lounge and it's overly loud. Great.

2011-12-21T07:11:00.001-05:00

It's kind of hard to know what to say, but you all say the perfect things so I'm going to say thank you and we'll come back to this. Love you guys

2011-12-20T21:18:00.001-05:00

I did give her the information in writing. I am now on serious suicide watch; not allowed to close the door or pull curtain. My roommate and I changed bed positions so she gets some darkness.

I had to do this. It is also so painful.

Gonna do something hard

2011-12-20T19:01:00.001-05:00

I have been realizing more and more how suicidal I feel and that I have a lot of really strong desires to stop fighting. I have no plans to hurt myself but I seem to be fighting the idea of making one. And I'm not sure anyone really knows how bad. My favorite nurse is working tonight so I'm hoping to talk to her later. If not tomorrow morning. I'll trying to talk to the dr. about it too but the nurses often listen longer, get more information and can share that with everyone. I am having so much trouble acting like anything is wrong and I'm scared I'll be sent home before it's really addressed if someone doesn't know how serious it is. This is why I'm here. It's ok to talk about it because that's why I'm here. But it's still a taboo-feeling topic. I think it would help even if I could cry but I can't. I want to and tears no longer come. I forget when I quit crying.

Tough day in my head. My niece called me (I think she had help) and that was great.

So tired of hating my life,

Jen

2011-12-20T13:57:00.001-05:00

Well, I slept a little more last night with a big dose of ativan. I was awake some but not as bad as it had been. Then they gave me a big dose of ativan to relax me and so I've had a nap. That nap was lovely. Stupid lunch.

I saw a doctor, not my doctor, who was really good about going through everything I've ever taken and finding something I could. I don't know how well this is going to work; it's a tiny Seroquel increase, decreasing my patch dose a bit (to see if it's agitating me) and adding another med that might make me sleepy. I don't feel incredibly hopeful but tomorrow my "real" doctor will be here so hopefully that will get new ideas if this doesn't work.

For now I've got 15 minutes to get un-groggy before group. Groups, by the way, one of things I needed to make me get out of bed, the person who does most of them wasn't here yesterday or today. I really hope she's not off all week. I need forced activity. And i fI know this and am aware and willing I really need it.

We'll see what happens next.

2011-12-19T17:30:00.001-05:00

The day started with a rainbow. No rain anywhere to be seen and a huge rainbow. I'm choosing to take that as hope.

There was a mix-up with intake requiring me waiting a long time (hours) before I got in here. But I did and presumably I'll see a resident soon and a doctor tomorrow and then we'll get going.

Right now I need prayers for 2 things: I need to cry. I also need to quit acting as if nothing is wrong no matter how crazy it is to do that. I need people to know I'm not well and I put too much energy and anxiety into hiding it.

That's it for now.

And the #1 sign you need to to the psych unit.....

2011-12-19T07:10:00.002-05:00

You wake up and think "wow, I really slept. I feel so good, Maybe this is a dumb idea". And then you realize you slept 3.5 hours and awoke at least once.

I'll keep posting from the hospital. Leaving in a few minutes.

Thanks for the prayers and support.

Nice

2011-12-18T22:43:00.001-05:00

Somehow that I don't understand but am pretty annoyed at Dr. Brain managed to arrange a Sunday admission and told everyone but me. I have sent no fewer that 4 emails asking what was going on and got no answer. Then a few minutes ago the hospital called to see if I was ok because I should have been there hours ago.

I AM SO ANGRY. I know she's sick. I know I accidentally kinda scared her last week. But for pete's sake that would not have been a hard thing to tell me and now I've lost a whole day of treatment that I desperately need.

So I'm going tomorrow as soon as I can get going.

Pray?

2011-12-18T20:24:00.001-05:00

I still haven't heard from Dr. Brain. Obviously I'm not going to the hospital today. Fine. But I have no idea what the deal is for tomorrow. The last I knew she was going to ask the dr. if he'd hold a bed for me then see how I felt Monday. I feel just the same now as I did before except for a lot more anxious if that's even possible. I have emailed, admitted that I was obsessively anxious and had no results. This leaves me with no clue if I really have a bed tomorrow.

The thing is that I don't know how much I said about this, but I was having plenty of trouble sleeping when 5 or 6 days ago I dreamed about killing myself. This is something that I think about but have control over. Dreams are not as safe nor are they controlled. I am still safe but I cannot relax to sleep more than an hour or so then I wake up, struggle to sleep, etc.

I've been mainly saying I need this to keep me out of bed and social. That part is true, and Dr. Brain knows about the dream although maybe not that it is keeping me awake. She does know I'm not sleeping much and that my anxiety is even worse than it was before.

I know she believes me. I suspect that the bed is there and she's been too busy with her own life to be on email much and therefore hasn't answered me. But I'm scared that tomorrow rolls around and I still don't know and something happens like the unit gives away my bed. I'm planning to wait until 10 AM then call Dr. Brain's office and ask for advice. I am not comfortable calling the unit because if they don't have a hold I'm going to sound crazy and then show up later with all these people who think I'm nuts. I think sometimes when she feels I'm pestering her she backs off and I probably have been but am desperate to know what is going on. If I had any other way to find that out it would be one thing but I don't.

Regardless, please pray as you get this that she will feel a strong need to contact me. It is 8:15 pm here at this moment. I've lately gotten emails from her as late as 11pm or 12 am. Please pray that she feels a strong need to touch base with me, a need she can't ignore. Pray that things truly are under control and the time I have to work so hard to stay together is limited. Once I hit that hospital it is safe to fall apart. Until then I am wobbling along, scared to let go off the control because of fear that if I don't fight to stay together that something bad could happen without my thinking carefully.

I made this worse by not realizing until I left Dr. Mind's office that this was what was needed, so I didn't have his back-up for what I was saying. I don't know he'd even agree although I think so. So what this all sounds like to her, I'm sure, is a panicked Jen who isn't very clear trying to explain what is happening instead of someone giving her matter-of-fact information which Dr. Mind would have if my brain had been working faster.

Please, if everyone prays then maybe something will happen. Sometimes all it takes is my starting to write something like this about feeling desperate to have help and she answers but even that is not happening today.

I'm scared. Not for my safety but that i won't get the help I need fast enough. Much more time without sleep is impossible to ponder; I've been there but never when I was already depressed enough to not be able to get out of bed without extreme efforts.

Praying and praying here.
Thank you

Ouch

2011-12-17T21:34:00.000-05:00

I just decided that I might feel happier or more relaxed if I watched the video I made of my wonderful day with my niece back in November. And it still is a great video of a great day. However it made me cry. Those days were hard and I was so tired and yet they were only a short period from being toxic and everything that has come after that. Those were the days that I truly thought I could work again soon. Now I can't even handle my simple job of waiting to hear from Dr. Brain about whether I'm going in tomorrow or Monday. If I don't go tomorrow I'll be able to see her for a while if I can make it down there. But I just need to get the going and signing in part over. Not strong enough.........

I don't want to be this brave

2011-12-17T19:26:00.000-05:00

Admitting before someone told me that I need help is a big, huge step for me. I've rarely if ever done so. I know that it is right this time but I really can think of so many things I'd prefer. I am basically forcing myself into doing many of the things I've felt impossible for so long now. It's scary. I want to cry but I have my emotions in lockdown.

I still don't know when I am going. I am assuming this means Monday but hoping not. Hopefully Dr. Brain gets back to me soon. I know I caused all kinds of confusion yesterday and am probably not her favorite person. I'd avoid me too frankly. But I find it really hard to just relax when I don't know what is going on about something this big and although my family is being WONDERFUL (I know!) I hate that I'm likely to be totally messing up Christmas. I hope that my mom will go down to my sister's to be with SOMEONE that day, or that she and my brother get together, something.

I am doing the right thing. I am doing the right thing. I am doing the ONLY thing. But it still sucks.

Learning curve

2011-12-17T10:18:00.001-05:00

My pulmonologist wanted me to change from the nexium I've been on for years to Zantac 150. I thought this was weird but dutifully tried. When I saw Dr. Body and he asked about the switch he looked skeptical and I told him, yeah, I know, but I figured I'd give it one bottle.

The last few days I noticed more reflux but figured my body was adjusting. Wrong. My body was telling me I made a mistake. Last night the reflux got so bad that it felt like it was going into my nose. I did all kinds of "don't do" things, like taking nexium, then 2 chewable pepcids. I had to sleep sitting up.

I now sound asthmatic and need to do a breathing treatment here in a minute. Not good because I do not need to be agitated. This also means I'm back on my steroid inhaler.

The hospital will put me on a stronger drug, Protonix. I already have a request in to Dr Body to continue that for a bit.

My mom sent an email gently saying I may or may not be able to come to the planned Christmas and that if I couldn't we'd re-schedule for the next weekend. I think they'll let me out that day, especially if Dr. Brain is still working. She covers Christmas and I don't know if that means she'll cover that day as well. I hope. I'd love to have her on my side for this. My mom handled this well. Thus far. It's a pleasant surprise.

I called her while she was skyping with my niece so I got to talk to her for a minute.. I couldn't hear her and she coudln't find me so it didn't work well. But cute nonetheless. I love being "Aunnnt Jen".

Nebulizer time. I suppose.

Accepted again

2011-12-16T16:22:00.001-05:00

I have been accepted to the psych unit. I will be going Sunday afternoon/Monday morning. I think. Dr. Brain was trying to change that from today to a bed hold until then. I dread it but I need this. I have barely been out of bed for anything for a month. I have not been well enough for the smallest things; I have barely even seen my mother. I have been too sick for too long and it's time to stop and be where they make me get up, there's social pressure to brush my teeth, I have to talk to other people, etc. The reason Dr. Mind feels stuck is that he can't physically follow me around making me interact and do things and that is what I need. I dread it because I feel safe here but I have to get past that. I also have to feel safe and to stop waking with panic attacks every time I do sort of sleep.

I just got back from Walmart trip 2 (I lost my wallet on trip one) and I think I'm going to break my rules and try to nap a bit since I was up all night and freaking out all morning.

what have i done?

2011-12-16T12:05:00.000-05:00

i emailed Dr. Brain that I think that if things don't improve I need to go to the hospital where I am forced to participate in routines. I also said that I really wanted to try to make it until the 26th at home, depending what she thought of what I said. I don't think she read that part. As far as I know she's trying to get me a bed as I type. I don't know if she'll make me do that or let me wait but there's a strong likeliehood that I'm going to the hospital. If it's today that's good because I'd likely be out by Christmas. It's not so good because nothing would really happen until Monday and hospitals are awful on weekends.

I wrote that thing a million times trying to not scare her. Seems I failed. Hope she gets back to me soon and says I can wait. Not sure she will. Gotta wash clothes.

one thing I know (edited for an error)

2011-12-15T23:54:00.001-05:00

I may not be doing well and in my heart I may doubt that anyone treating me cares anymore. I may feel totally alone, but there are people watching out and trying to help. And I need to remember that.

Dr. Mind and had quite a talk, one where I admitted that I am feeling worse than I am always saying and that I may sometimes be seeming better and feeling the same. This happened only because he thought I seemed better at the start of the session and I tried to give reasons that what seemed to be wasn't. By the end it was just that I sometimes don't turn off hiding it although I try with him to not do that. He pointed out I've done well before. I think he's a bit shaken still by the lithium toxicity we all missed and I think he also feels guilty that he did what I did and assumed it was the beginning of psychosis instead of sending me to the ER. We talked about some of my nightmares and how I really seem to be having a lot more PTSD in the mix right now; I think this is terror of what is happening and what has happened. I think I was a lot more honest acnd emphatic about that honesty. We talked about some of the trauma behind the nightmares. We talked about how extremely difficult a shower is. We talked about my guilt about now getting better. We talked about how time is loose right now and that suddenly it's almost Christmas and I thought it was 2 weeks off and that this scares me as it means the time until I return to work (in theory) is drawing nearer and I still can't stay out of bed. He didn't say a lot; I think I spent a lot of the hour thinking of how to answer just a few questions that were painful. But the end result was that he said what I've been needing to hear and I'm not entirely sure he knew until today: that he knows I am so, so sad and that I've very ill and that he knows I'm scared and that he can't make promises that I'll be going back to work in a month, or anytime soon at all, but that we'll get through it. Review of safety and we were done. That also can be things like everyone was asked to pray for me during my first hospitalization.

{ETA: the computer ate a paragraph saying that the counseling center where I go is a place I'm well known because I've been there forever, probably with one of the more profound illnesses. They've been kind beyond belief, right down to significantly lowering charges, making sure that if I need to see Dr. Mind I get in if at all possible, and just general kindness and respect. I was saying that they meet as a group to discuss difficult cases and seamlessly transition into...} He told me today he hasn't brought me up in there in a long time but that we were getting stuck so he did. He talked about how I need more things to do to get me out and how I need more support but that NAMI isn't an option as my local group is for people more affected than I am and we went so far as to contact the state level and nobody could find a group I could get to. One of the other therapists, one of the owners, offered her daughter who is involved with NAMI and may be willing to talk to me. So hopefully that will be set up fairly soon. I asked only that we actually meet in person, preferably when I am not going up there, so that I have another day I need to get up and shower and be human.

We also tearfully talked about what is becoming more and more obvious to me: I assumed for a long time that when things improved that I would go back to the routine I've had the last few years: up at 4, bed by 10:30 or so. I've finally come to terms with the fact that any sleep is going to be sleep we're happy to have if it is solid, without nightmares, and lets me truly rest. I was able to do the job I have because of that sleep schedule. I even pushed through the environment there making my asthma much worse (factories with some nasty chemical outputs), because I love it. I'm facing now that I will hopefully go back there but that I am very unlikely to be staying. I can't live with constant asthma attacks; I haven't had one in 3 months now and am not even using my steroid inhaler (ok'd by the pulmonologist). Dr. Body was impressed how clear my lungs are. I'm going to have to transfer or quit. The other problem is that not only is the job so far but it is the wrong direction. I need to be able to just see Dr. Mind if I need to. Twice a week visits are sometimes my reality with him (like for the last 4 months) and when I work so far away it's nearly impossible. I need to be able to see Dr. Body without needing a whole day off. I need to work where they are. So, sometime this year I'm going to have to tearfully resign/transfer from the best thing ever to come into my life. Coming to terms with that sucks, but I think it's true and not just depression true. It was good to put that into words.

I am going to try to spend nights in bed and at least a few hours on the couch every day. I can still lay down but it will be a new room. This was my thing and I'm going to try really hard to do it as I'm supposed to have something good by Monday.

I also told him that I want honest assessments next week as I'd rather find myself at the hospital Monday than for Christmas. I know I'm on the edge with that and keep staying on the edge and I don't care but I don't want to be in there for Christmas. Christmas is likely enough to be the last thing I can do and if I can't stay together then well, we'll deal.

And then I went to Walmart to grocery shop and did sort of ok wearing ear plugs, except I dropped my wallet in the parking lot and didn't hear it fall (ear plugs). Someone turned it in and I'll go get it tomorrow, hopefully with credit cards intact. Ugh.

And now I'm on the verge of more crying and must take pills so I think I'll do those 2 things now and talk to you tomorrow.

I don't know what to do

2011-12-15T14:26:00.000-05:00

I had originally planned to do a number of quick errands today: return some things, get some food, buy some jeans that fit, get new pillows (I usually wind up folding my pillows when I sleep which does not do good things for them. I buy lots of pillows. I never know if buying cheap ones is better than more expensive. The more expensive do last longer but I still ruin them faster than I should. Nonetheless the most recent somewhat more expensive ones have lasted a while (4 months or so) so I'm going to repeat that.

The thing is that I was up until about 3, am quite tired even though when I did sleep it was soundly, and I still feel sick. I really feel antsy though and want to leave desperately even though I know I don't have the tolerance. So that means filling some time at home and I don't know what to do to stay busy. I tried the logical step of sleeping but that didn't go anywhere. I need to eat but have no interest. It's a strange puzzle.

I like anti-psychotics

2011-12-14T20:02:00.001-05:00

I think that needs to be said. Jean made me think a great deal with a comment earlier today (2-3 posts down, sorry, too nauseated to search right now.) The point was that doctors aren't always the best sources of information. She's right but I'm fortunate. I thought I'd take a few minutes of trying to get get sick to explain some of the decisions I make.

This is true. I think how much depends upon the dr. Dr. Brain is different than most doctors and vastly different than most psychiatrists I've encountered. There are a lot of examples, including simply that she is helping me from her home while recovering from surgery; has given me permission to contact her while she was on vacation more than once; has called me just to be sure I'm ok on Christmas eve; coordinates with my other doctors (thus far at different times she's talked to Dr. Mind (constantly), Dr. Body (a lot), Dr. Sweetheart (a lot), numerous anesthesiologists, Dr. Kidney and also other psychiatrists. She has spent hours and hours trying to help me, plenty of that on her own time during these months. She knows the numerous issues I have and that things are never simple fixes for me. She knows how much demand that will put on her, but she doesn't stop. She's also blunt with me, something I appreciate.

Each med I've been on has been reached via a pathway that was created with certain characteristics in mind. Because during my pre-diagnosis years I was on 11 antidepressants and with the doses rapidly increased then the med pulled my brain doesn't like antidepressants much. Many people with bipolar are better off without them and at diagnosis with the guru I was told that was true for me. Yet after a few years it because clear that an AD was needed and we found one that worked, until it caused my blood pressure to be high enough to require meds. As a last resort imipramine was tried and by carefully messing with the dose I was on it for years. When the narrow line between too little and too much merged I switched to Emsam, which works better than anything else ever did. There are at the time a few tricyclics I've not been on but which are closely related to imipramine enough to know that they aren't worth trying. There are new versions of a few meds but they are all meds that I had bad reactions or irresponsible exposure to. I don't even want to try them and they aren't on the table. Even if Emsam had to stop they'd be off the table and another MAOI would be on.

I technically can't take 2 antidepressants now because of the MAOI. Emsam is actually such a different MAOI that unless you are taking the top dose (me) you can generally skip most MAOI precautions if careful. However, for one thing it works at a high dose. But antidepressants aren't kind to me and I wouldn't take a 2nd if that was the only offer I had.

Right now we hope that my depression will be controlled by the return of lithium. It seems reasonable since I was actually improving rapidly until the toxicity and the hold at non-therapeutic dose. We also know lithium is what controls rapid cycling for me thanks to being on and off it with the first toxicity. We'd hope something else might have taken that job over the years but obviously not.

However, lithium alone is not going to cure me at this point. In a couple weeks something else probably will be needed. Chances are good that will be an antipsychotic. It may be for a pulse (a short period I take it to see if it kicks things into the right place) or an adjustment or an additional med. This is fine with me. Antipsychotics fall into 2 categories for me; ones that work and ones that don't/cause serious reactions. Because I've had several bad reactions we know that each time I try one there's a decent chance it won't work. (This is also true for anxiety meds, antidepressants, seizure meds, etc.) However, I have learned a trick. An antipsychotic that works for me will work wonderfully. It won't have many side effects and most that it does have will be controllable. It will do more to keep balance than anything else. It will help with my ever-present anxiety. It will let me sleep. In all the antipsychotics that happen to work for me are life-saving despite the scary things that go with them. To acknowledge that by taking these drugs I'm choosing some bad effects to my health: weight gain (covered plenty this week), brain chemistry changes that can be permanent, increased risk of diabetes even without weight gain, increased cholesterol, etc. Jean said in a later comment that she is concerned about brain shrinkage related to antipsychotics, beyond that which goes with the disease.

I think I have a weird stance on that. I've been through enough to know pretty well that meds aren't kind to my body. I've already made decisions about lithium that could harm my kidneys and now further decisions to continue it when toxicity is more likely and every toxicity could be the one causing me to be on dialysis in an ICU. This last one was probably close to the level where that's a concern although my kidneys were strong and went into overdrive and have recovered fully within a few weeks. Long term results of that and that it may happen again? not good probably. But I made a choice to risk kidney function and potentially shorten my life in order to feel good. I still feel good about that decision. As far as the other meds, they have terrible side effects. But I can't survive without them. So essentially I am again picking quality of life over quantity. People with bipolar are already more likely to develop dementia. I'd rather increase that risk a bit than to live without the stability that only these harsh meds can provide.

We went a long time not knowing if I'd ever tolerate an antipsychotic. I failed the first 3 or 4 with nasty/sometimes dangerous side effects each time. Latuda's nastiness was nothing compared to a few years ago. But right now these drugs are the ones that let me have as shot at a real life. I suspect I'll be on 2 antipsychotics by the time I go back to work (3 if you consider lithium as one since it technically is). That's fine. I'd take nearly anything to have the gift of stability and if that hurts me later then we deal with that then.

I do admit that I find it hilarious that all these benign meds are things I can't take (cold meds, ibuproferon, aspirin, any anti-inflammatory, various other things) and yet I pour nasty meds in daily. As Dr. Body told me once he can keep me alive. He just can't keep me comfortable because the meds that we have today that allow that for the first time in history are all things I can't have.

Thank God I can have zofran though. I still feel like crap but I'm not nearly vomiting and I ate something that didn't taste good but did have nutrients. That is one comfort drug I'm so glad that I get a supply of because dehydration from vomiting is not good for me. Normally I wouldn't take it that soon but knowing why I felt sick I don't care.

Enough for now.

gak

2011-12-14T17:13:00.001-05:00

I restarted lithium last night per Dr. Brain. She thinks we have just discovered basically that this is the glue that holds me together. This was suspected and was why it wasn't stopped altogether. Some people have it stopped after 1 toxicity. After I had a hard time tolerating it for a while after the first one we stopped and a few months later had to re-start. When diabetes insipidus is diagnosed the usual plan is to stop the lithium. After 3 doctors went back and forth and I clearly stated my understanding that this may not be totally ideal for my body I was allowed to stay on. And after a 2nd toxicity, especially with numbers like I probably had it's rare to stay on it. I am going to have very frequent blood tests forever but the plan initially was that if I went several months and didn't need it desperately that we'd consider removing it but that it was more likely I'd need it and after those months had passed we'd try again. Now that I've fallen totally apart we are skipping the months to recover part and getting it back. Thus far I am sick. I am trying to not take Zofran right now but suspect I will as nothing else I'm doing helps and not vomiting is for my benefit with the patch and my constant dehydration not matter what issues.

Regardless, I'm back on 1 whole lithium pill (instead of 1/2) and I'm sick. This is expected but it is not fun. It would be easier if it improved my mood immediately but that's not happening.

New plan

2011-12-14T01:36:00.000-05:00

I got a much more coherent email from Dr. Brain. We're going to get my lithium level up now instead of waiting as planned. I already took the higher dose. I also was able to ask about anxiety meds, anything that might do better than the useless klonopin. I hate to lose Klonopin, it worked well but it's done for now.

I also was able to ask if I did have encephalopathy (I don't know if I told this story; the psychiatrist from the bad hospital stay said I had this as a defense to why he treated me the way I did; I was confused. I know I had sx of this, but I did not know it was diagnosed. It wasn't on my d/c papers nor was it mentioned to me. I think he's using it to cover for his bad behavior). However, I also still have cognitive side effects and the occasional neuro thing so maybe I did. I just want to know so that I don't panic about any changes in the next 24 hours. Obviously there are changes and CHANGES but I'm scared enough that I missed this before that I'll be being very, very careful for a long time.

I also realized I have a bottle of zyprexa sitting around that I paid a lot of $ for and only took for a few days. So I asked about doing a pulse of it to see if that will trigger some stability.

I'm less scared by myself tonight. I can't settle down, mainly because i need to cry and can't, but I managed to ask rational questions I think clearly. I hope. And the anxiety med thing is HUGE.

I'm suddenly sleepy. Not ideal since I just took more meds to sleep because I was so awake. Oh well. Nothing planned tomorrow anyway.