Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, January 30, 2010

Gage Weekend

I've not written much this week because simply put the extra work has caught up to me and I'm totally worn out. I had a very difficult conversation with Dr. Mind that added to the stress, and all I've been able to do/wanted to do was sleep. Generally speaking, this week I have gotten home, put on pajamas, fed my cats, fed me, quickly checked email and my reader and gone to sleep. Thursday, after being so upset with Dr. Mind, I didn't even do that. And so I missed something that makes me very sad.

Many of you will remember my friend Julia, who posted for me when I was in the hospital. Julia has 2 children who both have had kidney transplants, the most recent just 3 months ago. Her son, Gage, copes with a lot of emotional issues on top of this.

Gage and I have a lot in common. Gage is much like I was as a kid, except that he has parents who will do anything to help him and who are realistic about what their child is facing. A few days ago they had to place Gage in a pediatric psychiatric facility. They now are trying to learn to live life according to the somewhat random, often frustrating rules of a psychiatric facility while Gage gets the help he needs.

So, this weekend has become pray for Gage weekend. I won't be posting again until Monday. During that time I will just ask you to pray for him and that his treatments work quickly, that Julia and Julian are able to feel peace about this, and that when they next see him they see something positive to give them hope. The wonderful thing about psychiatric hospitalization is that they will change med doses and combinations much faster than is usually done outpatient and so results do often come fast. In my case you can't increase the dose fast, and in reality I manipulated my doctor into an increase 3 weeks faster than the psychiatrists wanted, but it was really pretty amazing to watch how fast the other people on the unit were responding to their rapid med changes. At the time it made me just mad because why did I have to have the oppposite issue, but truthfully it's amazing.

Wednesday, January 27, 2010


I have PTSD. It's not really a big deal now, the worst of it was in the end of college, early grad school days. But although I know how to handle it and live a great deal of my life without any real issues with it, I'm finding that the hospitalization has triggered more PTSD symptoms than I've had in a very long time, including the symptoms I've had when I've talked in great detail with Dr. Mind about the trauma.

We're just treating the whole thing as if it were a very traumatic thing. There are stories I need to tell over and over and so I do. There are things I just don't know how to process, so we work on that. And there are things that I just haven't wanted to talk about yet. Like being evaluated for OT, and how awkward it was after she started explaining OT and I told her I WAS an OT. It was not easy for either of us. Between both doctors I have a list of things that I know I have control over next time, things that definitely make me feel better. Off the top of my head they are: I will have a script for an injection if I get out of control; my meds will have an order that they are not to be given early if I am to stay awake; I hopefully will be able to talk to Dr. Mind on the phone a few times, privately; I will have a list of things I need for sensory issues so that I don't have to ask and argue each time I need a coping tool. Oh, and I will have a specific diet orders that are from the Emsam diet list and I will be allowed the foods that were taken from me for no reason this time. I think there are a few others. I can add to the list as well, and that helps too.

But the weirdest things trigger memories. Tonight I was working with someone on feeding skills. I heard the meal cart arrive and then got her tray off, and had a hard time. Because every meal that whole time I would be sitting in my room and hear the cart arrive, and then I'd shuffle down, pull my tray off, and eat my tiny bits of food I didn't want, using flimsy plastic utensils (so flimsy that there was no way to hurt yourself with them, and cutting things was very interesting). The patient was on the dementia unit and I already have trouble there. For one thing is smells like the hospital. For another it is locked, and just because I know how to get out doesn't make me feel less panickyse. I know locked up far too well now. In the hospital the unit I was on was reached by coming up the elevator (a special one for the psych units I think) and then when you got off there was the outer area. When I got there the volunteer who took me up told them who I was, they buzzed me in, and the door closed. I remember how weird it felt to hear it close. I was in a room near the door so I heard lots of people come in and out over the days, and ti always remained in my mind that if I walked over there I'd just be led away. But then I was discharged and the door was opened without anyone even thinking about it. Which was so weird. Locked up and not allowed freedom at 9:30 AM, walking out alone at 10:30. And the meal cart was just one more thing that was too much. So I spent some time trying to gather my thoughts and re-focus on where I was and that if I was panicky enough I could be off the unit in 35 seconds. But I really had a hard time.

I also was talking to a patient about the difficulties that go with being in a hospital/nursing home, and was talking about something I barely remembered. There are standard codes that are used to mean various things in hospitals. Code blue everyone knows. Code brown, missing patient. Code purple/violet, out of control patient. Etc. I know these well from my psych years. I had a very hard time with that, because for whatever reason those codes were given on all floors, including the locked one that most certainly didn't have staff who were going to be heading for the code blue, nor were the missing patients going to appear among the 6 of us. And because I knew the codes, I'd hear them at night and integrate them into my sleep and wake up dreamng I needed to do something. They'd ask about my sometimes restless sleep and I never explained, never even really understood it until tonight, but agan, it was hard.

I didn't get home from work until 10 something and I wake up like clockwork at 5 these days so I'd better get to sleep.

Please keep Julia's Gage in your thoughts. He's having a rough time and I feel so sad for him.

I don't like this. I don't get a choice, and eventually I'll process all of it and it will get better. But so many things in my environment make it hard to just forget. One home uses the same beds that the hospital had. Just tonight I was adjusting one and remembering how stupid I felt when it never occurred to me to lower the thing for the first 3 days when it was left raised after the sheets were put on.

Monday, January 25, 2010

Disability versus Disability

I'm having a hard time with something. Obviously I've been working with a disability for years. I made a lot of decisions about work early on; there are things I take as immediate triggers that I need a day off, I let others heavily weigh in on what I am allowed to do, and I weigh heavily the consequences of what I do because of my disability on others.
For the most part I think it's been minimal, except when I've been on leave. I've had one summer I had to see fewer patients in outbuildings, although nobody really listened to that restriction. I've been moody of course, and tired and haven't handled every situation well. But I've also made sure that the major things were ok.

I have an assistant who has MS. I've not been told this, but she left a doctor's note about it sitting around on her desk and I have to get things off her desk frequently. She has only been there a few months. And she misses a LOT of work, often a few days at a clip. Last week she missed every day. I worked 55 hours last week. Which is good because I need the money, but at the same time I'm now dangerously tired.

I'm very confused by this. I'm all for people with disabilities working. I'm also for being realistic. If I had to miss that much work I wouldn't be doing it. First and foremost it is totally unfair to the patients who don't get seen, and the treatments they get are not the best. Second, it's unfair to me because it means I have to work far too much. Third it is unfair to other staff who have to absorb things she's not done/can't do.

I was told by my state's vocational rehabilitation services people that I should quit working. My doctors disagreed and I ignored them and it turned out to be right for me. But I am left thinking now about when you need to stop. I can't feel supportive of her working when she is gone at least every other week for at least a day. My suspicion is that they'll replace her when they find someone. Which is too bad. But accomodations don't mean only working 75% of the time.

So I find myself very torn. I know what it is to want to work when you can't. I've done it time and time again. And yet I've always removed myself from the situation when need be and done so in a way that the patients and co-workers weren't stranded.

It's weird.

Saturday, January 23, 2010

The locusts are coming

This is the only explanation I can give for my current life.

As I've been saying, I have had a busy, busy week. My assistant at one building was off all week and took it off day by torturous day (so much rather she just took several days when she knows she's sick; unfortunately this happens all the time although 3 days has been the max to date.
Regardless, just to give you an idea, I think as of yesterday evening I'd worked 45-47 hours. Too tired to remember. I told them I could do 6 treatment hours today with the goal of squishing the treatments together as much as possible. I had to do a few things in the morning then would go in after lunch. So, this was my day:

6:00 wake up
6:00-7:00 who knows
7:00 shower and wet hair but don't wash.
7:00 to 8:00 alternate getting ready for the day with finishing preparing a last few items for their trip to the resale store, packing these hygiene kits the nursing home church oranization is collecting for Haiti, and trying to remember to do various things
8:00 leave, only to get in the car and realize that the clock in my bedroom is wrong and I'm going to be very late for my eyebrow waxing appt. Call and thankfully they can re-schedule it for after my haircut since my hair nor eyebrows have been touched since prior to the hospital.
8:15-9:00 get hair and eyebrows done. Love, love, love what she did to my hair. Realize that I'm suddenly going grey much, much faster than I had been and I can see silver strands fro several feet away without my glasses. Realize for the first time that all the time I've been telling myself I wouldn't color my hair, esp. if my greys continued to come in silver as they have thus far, didn't account for the fact that I'm suddenly facing having grey streaks within the next year or so and that I'm probably going to be coloring my hair this year. Which I so don't want to have to be responsible for......

9:00-11:30 local errands
11:30-12:15 drive to the City
12:15-12:45 attempt to sell a bunch of stuf at a resale store. Wind up with them not buying any of the expensive, mostly barely worn stuff from when I was overweight, but buying my very cheap, very used, very, very old scrub tops and one blouse. They passed up an LL Bean barn jacket that is in perfect condition and which retails for a lot. It was very confusing. The reason they gave was that a lot of it was smaller than a typical garment of that size and so it could be a junior item or something. Because they label most junior clothes "20w" or something?? Or 2X Women's with a label from a store for larger women? And the other blouses were not long enough. Are we wearing long blouses now? Because that's not what I see. I have a short torso so it's not like I'm picking out things that are super long, but I'm proportional........ What I think partly was that they didn't tell me when I called asking questions to stick to the upcoming season, so some things are getting put back to try again in 6 months. I think also that my timing sucked. They're about to move to a bigger store and I bet they aren't buying much and not saying that. So some of it is going back again in aout 2 months when they are settled. Nonetheless, after the amount of work I've put into washing and perfectly ironing things getting paid a measly $16, less than the cost of the one brand new blouse they did buy, sucked.

12;45-1:15 wait at Target for them to print my tax record for the last year.
1:15 find out they forgot and it takes about 12 seconds.
1:20 arrive at new wireless provider. Rapidly tell them what is wanted and get new phone. Wait forever for it to be ready.
2:15 FINALLY get to work.
2:18-8:30 see rapid succession of patients. Do paperwork for the short time they are eating and I can't do anything else.
7:18 realize that one patient who didn't get seen all week thanks to not being in a priority situation and not having enough staff with my assistant off got a whole lot worse and now needs a hand splint, which could have been prevented if I could clone myself.
8:30-9:45 do all the progress notes for the week and write over and over "patient not seen secondary to (assistant's title) ill". Have no idea if they will be angry I did this since anyone working on SAturdy is to be ultra-effecient, but after we put them off all week for the absent assistant to do when she's back, I'm scared if she's not back on Monday that things will be so chaotic that I'll not be able to function, nor will anyone who is in to help at all.
9:45-10:00 realize the building's main door is locked and I don't know where the staff door is to leave. The door I think it is is alarmed. Finally go off in search of help and find the open door. Hike all way around the facility in the dark to my car.
10:00-11:15 drive home. Text another therapist to say I win, I worked until bedtime and then got stuck. Get text back that the assistant at her building had a car accident and is ok but will be off Monday. That assistant is the ONLY one who will help at the building where my assistant has been so unreliable. (More on that tomorrow. Weird situation. She has a disability. I have more sympathy than I know what to do with, and I know mine has made me do things wrong before. But I've always kept my committment to come to work unless I was on leave and her abscenses which are frequent and often for several days are making me mad because she has basically said she can do a job she clearly can't handle right now. But later).

Spend much of drive calculating how much my paycheck is going to be. Realize that I did what I expected would be possible: this week I should get a paycheck that will be as much as I made in 2 weeks at my last job.

11:15-11:40 feed cats, put on pajamas, heat supper, make a few more Haiti kits. Think about how doing is so much more meaningful to me than giving money, even though money is easier.

11:41 start this email. Eat the first meal I've had all day. Just never got hungry after my AM cereal bar and some chocolate mid-morning. And tons of water. I'm out of the meds for my diabetes insipidus and so I'm horribly thirsty all the time and I think I'm filling up on water. Which is one of the many problems with DI.

11:42 pick up cup of cider to swallow pills with. Dump 20 oz on the floor.

11:44 get out pills, including some valium to calm me down (need more obviously as it isn't working; typos due to this stupid computer, not grogginess).

12:40 still wide awake.....overload..........more sedation coming in about 30 seconds.

Thursday, January 21, 2010


I saw Dr. Mind today. I was pronounced the best I've ever been (it's true) and "IN REMISSION". Which is nothing short of a miracle.

We talked today about 4 years ago when I started to see him. I used to get so angry at him because he would tell me that I could be fine, I could live normally. Nobody else had ever told me that. Dr. Brain wouldn't say it never would be ok, just that we had to find the right meds and we might have to wait for new ones to come along (at that time that would be accurate; the 2 meds that have saved me are both new). He wanted to know why I didn't believe him then. I told him that even the guru of bipolar disorder I had seen had told me that (at that time, and a lot of treatments came along in the next few years) that I could manage my illness but that I would always deal with it. Dr. Mind told me that he just figured back then that he didn't know that I could be ok, but didn't know I couldn't, so he just went with the I could and said he guessed well. he's pratically gleeful.

Want to know a secret? I'll tell him next week, but I realized something tonight. I've been thinking about it for a while, but now I'm sure: I have learned to trust Dr. Mind. Fully trust him, more than anyone on earth I trust him. These last months he earned it. And that's truly incredible.

Otherwise, will say more tomorrow or over the weekend. Work intense. I'll be on overtime by noon, and am working Saturday as well. I can handle it and need the $$$.

Tuesday, January 19, 2010


Ok, so if this makes no sense I just worked for 11 intense hours. Hours which included cleaning up something that made ME gag. I don't gag. Ever. And I've done some very gross things. This was an AWFUL mess. I may not sleep again. Oh, and I've been up since 4. So I'm not firing on all cylinders.

I've been thinking about about how we look and how much that affectshow we are perceived. In the last month I've lost little weight. Which is rather odd considering my diet is so limited to mainly healthy things, but whatever. However, my weight is redistributing itself, or I have lost fat and gained muscle since I am working out with PT and have been putting in such intense hours. I look noticeably smaller, and places that have been plump are not anymore. I realized my bras are too big and measured myself; since I last did this about 6 months ago I have gone down a band size and 3 cup sizes. Needless to say, project buy bras is in the plans.

Anyway, now that I'm no longer "fat" I'm so surprised at how differently people see me. One lady a couple weeks ago mentioned feeling fat and then said "not that you'd know." Oh, do I know. But people suddenly are giving me lots of compliments. Not about losing weight, patients don't notice that, but suddenly people constantly compliment my complexion (which has been the same one all along; I'm doing nothing different to my face and never will because most things make my face break out), and although I've always had people talk about my curly hair, it receives different attention now, like "that's not the only thing on her I can say is attractive", or something.

It's so strange, and the more I appear to have lost weight the more I get this.

I also have to confess something. I feel like a horrible person for this, and so ridiculous because who more that I knows what it feels like to have meds alter your appearance. I have gone from 20W to a 12 (possibly a 10) in the last 12 months, and I've also gone from a size XS scrubs to a medium/large scrubs in a year when I started meds. I gained 40 lbs in the first 3 months on lithium, so I know lots about having your weight/appearance change drastically. I weighed 120-125 until bipolar, and the lowest I've weighed since starting lithium is 157. And the only real reason is the meds.

But I realized something, something that really bothers me about myself. There's a lot that could be hard dealing with Dr. Brain's illness. Obviously the fact that she could die is heavy on my heart and mind. Knowing she could become too ill to be my doctor scares me silly, especially because I know that while I am a difficult patient she's likely to hang onto as long as she can, it's a lot harder to treat a me than a simple depression patient and so if she does get sick enough she'll have to transfer me, at least temporarily. And I cannot imagine my life without her.

But the thing that makes it hard to think about going back? It is so, so hard for me to see her changed appearance. She's wearing a wig, which is various obvious to me simply because I know what her hair looks like and that her hair couldn't do what this wig does in it's style. She also doesn't have eyebrows, I don't think. But she also has a puffy face, and her skin looks unhealthy. And that bothers me more than any part of the "how does this affect me?". I don't know why. Maybe it's because I am acutely aware of the appearance of illness that it stands out. Maybe it's because I don't like change and I'm used to her normal look. Maybe it's just because I knew as soon as I saw her that I was right about what was going on and I'd rather not have found out that way. I'm sure that 6 months from now that will be back, at least to some extent. Her hair won't be back, but hopefully the wig will go. (I'll also admit: wigs bug me. I do not know why. It's almost a trauma fear thing, so I suspect there's a reason I don't care to recall. I honestly have trouble with hair period; facial hair freaks me out too). I actually am struggling with seeing her again and being reminded again that she is sick.

But, there we have it. Just Me is apparently quite superficial at times. Lovely.

Monday, January 18, 2010

Not the best start to the day

For the entire time I've lived in this state I've had the same cell provider. It wasn't by choice necessarily; it's just that the one I had was the only one who took people in my area. Then a while back that company was bought by another. I should have been able to just stay the way I was and transition without any bumps, but my phone broke and I had to get another, which necessitated getting a new plan.

So I just opened an email from the new plan. "Your bill is due....total $342." WHAT? Oh wonderful. The plan that seemed equivilant to my old one wasn't and I went way, way over my minutes. So I'm now trying to pick a new plan, knowing that this one is going to cost a lot of money.

I also am trying to see if switching providers is feasible because I feel a little cheated since I was assured this plan was equivilant to my old one and it CLEARLY isn't.


Sunday, January 17, 2010

That was weird

So I'm sure I've mentioned multiple times (because it rather fascinates me) that my appetite has been odd since starting Emsam. Essentially I'm eating: yogurt, pudding, soups (only vegetable or chicken based), chicken and biscuits, random vegetables, toast, apple butter, and cereal bars). I've eaten beef precisely once since I can remember (meaning since September), and that was Thanksgiving. I also had a small amount of turkey and ham at Christmas but no leftovers. Oh, and turkey sausage. I ate a good bit of that for a while. When I grocery shopped this week I decided to try hard to branch out a little bit. I bought some frozen meals that are stashed in the basement freezer and don't sound appealing yet. I also bought my delicious golden peppadews and brussel sprouts, something that has sounded non-appealing because they have a strong taste.

This morning I woke up wanting bacon. Unfortunately I had none. But the craving for meat lasted all day, so I finally cooked a hamburger patty. Cooking it made me sick. I cut it into 3rds and ate only a tiny bit first, then decided to finish. It was ok. It did not make me think I'm ready to rush into meat any time soon.

So odd for a hamburger to be a big deal. And I feel faintly sick since eating it, so I'm pretty sure the other one in the packet won't be eaten by me. (Lucky cats.....)

It's the oddest thing to have gone away. I didn't eat meat in college, but that was because I worked in the cafeteria and watching it be prepared in huge quantities made me ill. It's not like it's a bad thing to give up, and I'm sure I'll eat it occasionally, but this curiosity based attempt made me sure I'm not interested.

Hospital Trauma: Item 4983

I've probably posted about this before. If nothing else I am sure I did somewhere in the daily notes I posted. But this is continuing to haunt me and I have to talk to Dr. Mind about it, to try to take away the anger and anxiety that comes from it.

Every morning they started the day with a group. The group generally included a few announcements, like such-and-such doctor was going to be late today and the afternoon whatever group had been changed to something far less useful for Just Me. Then they'd go around and we'd all talk about how we slept, how yesterday went and how we felt this morning. Inevitably the'd remind someone that depression often feels worst in the morning. They'd also ask specific questions about something that might be happening for one of us if we didn't bring it up.

On the 3rd day I knew I was probably starting the patch. I wasn't certain because it depended on whether the pharmacy could get it before the doctor's sample stash ran out. I found out that I was indeed starting it when the art therapy student running the group asked how I felt about this. After determining that she meant I was, I said what was true, that I was glad to be starting, but also very nervous because no medication has a very high chance of working for me and I didn't know if I could handle it if this didn't, given that going off it would mean having few good choices, and would also mean another hospitalization. She kept lecturing me on having a positive attitude. At that point I felt so bad that I didn't need the lecture and I was much less shy than usual. I got pretty mad at her and finally told her that she could tell me how positive to be after she had taken more than 40 medications, most without any success, for the treatment of one condition, in a matter of less than 10 years. She continued to insist I was being negative and that this would affect the outcome and that there was no relevance statistically to how this med would work.

She was wrong. Once you are treatment resistent you stay that way, and you continue to be much less likely to respond to anything. I also continue to believe that I have a right to approach meds cautiously, because if I start every med with that wonderful certainty that it will work and it fails, just like so many before it, I wind up crushed. It is not negative to be realisitic. It is not negative to protect yourself.

Looking back, the truth is that I went into this as optomistically as possible. I took a huge leap of faith to give up on a med that had worked for me for so long. True, I knew it was reaching a point where it wouldn't work well much longer and where the side effects had become worse that was reasonable to tolerate (and damaging to my body), but I did decide to go ahead and give up what was at least more or less working and move on to something we could only hope would help. Statistically I was a good candidate. Dr. Brain had always thought so, and this drug had been in back-up position for several years. I knew that. By the time I started it in the hospital those things may have been less in the front of my mind, but basically I went into this on day one knowing that I was taking a huge risk, that I had little choice, that it was hopefuly is that this could work but that nobody would know until it had time to help (6 weeks, by the way), and that it would devastate me if I let myself think think that this would work wonderfully and it didn't. By the time I wasted 2 days of my life in the hospital with no med change on day one, and the med being taken away on day 2, and the rapid decrease in dose I had done in the 5 days prior to admission hitting hard, all I really knew was that something had to happen and that this had the best chance of helping, even though it wasn't necessarily a good chance. I also knew and reminded myself many times in the first few days that other meds with less of a chance of doing anything had changed my life (Seroquel, which even Dr. Brain had expressed doubt would help, and which was the first antipsychotic I even tolerated enough to take more than a couple months, after being on 3 or 4 others, one on 2 or 3 occasions just to be sure the bad reaction was that drug). But I was not putting all my eggs into one basket. That student tried to demand I did, and I still am bothered by it.

I know that she just didn't know. She probably had never even looked at my history and if she had it wouldn't have been detailed. The hospital never took a detailed history and Dr. Brain's history in the hospital chart won't go back through everything as she's only been there 4 years and would have no reason to have filled in everything before that. She also was about 22 years old and left in charge of a group of psych patients, quite possibly for the first time. I did a horrible job the first time I led group in the psych unit at my clinical. Not because I did something to a patient like she did, but because the thing I had planned didn't work and I didn't know what to do so I kept on trying, even though I should have just started throwing a ball around and shut up. Even if she had been more experienced, my situation is rare, and also the degree to which I understand my situation is rare, because I am a healthcare professional. I was encouraged not to talk about what I did for a living (stupid since the nurse in the group was encouraged to talk about it, and because it wasn't like I had a lot of energy to filter what I was saying to keep the staff comfortable). So her annoying statements might really have been just directed at the wrong patient and would have been appropriate in a different situation. Nearly certainly they would have been appropriate had I not been through so much trying to get any med to work, ever, in the past.

That happened the morning I lost control totally in the afternoon. I have no doubt that it was linked. When I did lose control totally I couldn't have named a single reason, other than it started when I heard someone who had been there a day less than I had but who had gotten started on meds immediately tell someone on the phone that he already felt a little better. Since I'd been there longer and only felt worse I just couldn't handle hearing that, and then things just snowballed.

This won't happen again. The things that happened that day make up a huge part of my terror of hospitalization, which Dr. Brain dose admit will happen if I need any change to my antidepressant and quite possibly with other changes thanks to interactions. When asked she also admitted that further hospitalizations will be more like 2 to 2 1/2 weeks long because of how long it takes to get MAOIs out of the blood and start another med. And she was firm that it will be in the same place; she is very adament that the general psych unit is not right for me. I understand why, and I know that I have to get past my fear.

I did talk to her about various things to have in place next time and I have a list of orders she'll write before I go in, things like a shot of something if I get out of control, orders to allow my sensory stuff without arguing with the staff, that my PM meds cannot be given early and then staff expect me to act just like I was fine when I needed to sleep; etc. Hopefully she'll be able to work out for me to have phone appts with Dr. Mind as well, something that desperately would have helped this time.

But nothing can protect me from students. And that scares me.

Saturday, January 16, 2010

So this is how I feel

I don't think I've talked much on here (and I interrupt myself to say that please forgive me if random letters appear at intervals. This ancient loaner laptop has this horrid problem where it suddenly picks up the cursor and moves it back 2 or 3 lines. I catch it eventually and fix it, but I am paranoid I'll miss a phrase or some letters since if I'm looking away as I often am while enjoying touch typing I sometimes have typed quite a bit before I notice), about the good thing that has happened in the last 10 days.

When I saw Dr. Mind on the 7th he said "you seem better. I see a big change". I denied really feeling better, still aware of low level depression. But 2 days later when I saw Dr. Brain I admitted that I knew what he'd been referring to, and that I was starting to feel "all better". Over the last week this has grown. I'm not 100% better, but I'm also extremely tired and overworked and knowing that this is continuing for at least another week; I'm hurting a lot of the time; I had to make it through my birthday which can be very rough; I had a disagreement with my sister that was one more time I got to confront my childlessness versus she has every right to not enjoy every second of pregnancy; and I'm coping with Dr. Brain's cancer. Which isn't easy, since it's not about me, and yet it scares me. I already opened my mail innocently one July day 10 years ago to a letter that said "We regret to inform you of the death in June 2000 of Dr. Prozac in a boating accident. His death is a great loss to all of us at Stupid State University that thought this form letter was ok and had no memorial service or anything for him. There will be no psychiatric appointments until September 2000 at which time we will welcome Dr. Announces-you-might-be-bipolar-30-seconds-after-meeting-you-scaring-you-so-much-you-aren't-diagnosed-for-years. You should contact the health center immediately to schedule a follow-up with her. If you have meds needs in the meantime you may follow-through with your primary doctor." Seriously, that is pratically word-for-word the insensitive letter.

I know that this is not the same. For one thing, there were strong indications Dr. Prozac killed himself. For another, Dr. Brain will be fine. I truly believe that. And if she were to have complications she would tell me upfront. And in all likeliehood in another year I'll be able to start to forget about this for her.

It's just that I have this thing where I desperately fear major illnesses in those I care about. I think it is because I cope with death all the time and so if it hits close to home it winds up absorbing the pain from the last 30 deaths I've had to cope with. Right now I'm haunted by overhearing a patient's daughter tell someone as I left the room how good I was with her father. I never felt good with him, I felt like I was pushing a very sick person too hard, or I felt impatient when he didn't try on his good days. And he died suddenly, hours later. I mean, he was dying, but not actively, and then he was gone. But to complicate it further, I've comforted myself with this mantra that whomever is at low risk for this, that or the other, they are young and healthy, etc. Not that this has kept me from crying in fear over perceived severity of illnesses that weren't that bad. But now my whole focus on that idea is thrown, and instead I'm made to realize that the reality is that I have 3 people in my life who are very important to me who are all the same age and Dr. Brain is one of those 3. And to top it off, my mother was diagnosed with basal cell carcinoma this week as well. That's the cancer to have, if you must have one, but still.......

Nonetheless, the original point of this got lost (sorry, this isn't the best-written post, my Seroquel and Klonopin are kicking in) and the thing is that the depression is definitely improving. I think it soon will be gone, especially if I can just get enough rest.

Dr. Brain said when I saw her that things look like I'm responding incredibly well to this combination and that this may be the magic combination that we've been waiting for. Apparently she's had a lot of success with people not having trouble with needing more and more Emsam over time (bad when there are only 3 doses and the 3rd is to be avoided if at all possible; I'm on the 2nd) and that is with others who are very treatment resistant. I am recovering slowly but surely, and apparently that is the goal after being so sick. Obviously I'd prefer to just be better today, but it seems like things look good for me to feel much more like myself, to get to find my new normal, within the next few weeks.

Not so bad, especially when the only real side effect is decreased appetite, and that's ok, just different to adjust to.

So, we'll see, but this may be ending, and I suspect would be ended if I just had a little time to recover without working so very hard.

Weekend off

This is what I've been waiting for. I can't believe how much better I feel. I actually am so tired that I've spent hours not sleeping but just laying still. Which is totally impossible for me most of the time.

So I have spent the day making soup, sleeping, resting, reading, and actually experiencing that my ankle hurts. I've been so busy that I've kind of avoided that. I mean it has hurt, but I'd forgotten the achiness because I'm constantly moving and therefore blame all pain on being active. Turns out, no, my ankle just hurts.

I've also eaten more golden peppadews than anyone should. I love regular ones (they're a South African pepper that is a combination of sweet and spicy) but I can't buy them because I inevitably eat too many and give myself heartburn. I found golden ones last night at the olive bar, tasted for free, and bought a few. since they are not spicy at all. They did not last, and since I've barely eaten anything not bland in months I'm considering it a breakthrough.

And that's my story for the day. I may do some sewing in bit, but that depends on whether my ankle decides to let me rest it on the floor without hurting worse. For now I'm not going far from the heat pack.

My poor cats have loved the day. They must have been feeling really neglected, as it wasn't until about 4 that I didn't have one or more in close contact with my body.

And tomorrow I still don't have to do anything!

Friday, January 15, 2010

Made it

I made it through this week, and believe me, that has been an accomplishment. I am so incredibly tired. But I have nothing to do the next 2 days but rest and enjoy some quiet, and I need that more than anything.

Just to give you an idea of why I'm so tired, I had 3 almost 2 hour from check-in to leaving PT appts this week, each of which meant leaving home at 6:30. I also had one counseling session, which i then had to go back to work to complete paperwork that it had interrupted. I had 2 nights I had to pick up things which because I'm working so much meant getting home at 10 pm, both times after leaving at 6:30. I think the earliest I was home all week was 8:30 and the latest i left home was 8 AM. I started work about 9:30 this morning. By 12:30 I was on overtime. I worked until 7. And those work hours have been fast paced and have required slamming a lot of stuff into one day. Next week already is crammed for the first 3 days, so I am even more planning to rest.

I also made it through my birthday. And the blog's birthday. As for today this blog is 4 years old. this was the easiest birthday ever. The only happy birthday got from anyone was from my bank, and since happy and birthday tend to not mix well for me that's fine.

So much has changed in that four years. So very much. Four years ago I was feeling slightly better for the first time in years, starting to respond more to meds than I had ever before. I was feeling more and more confident in my identity as a mentally ill person who was able to contribute to society, and less and less interested in hiding that part of my life from everyone. The only real downside was that I had been sick at the beginning of the month when my labs were due and had felt well enough to take on an extra project for the month of January, so I was putting the labs off.

Nine days later my therapist dropped the bombshell that she was leaving the country for a number of years. I did not react well. I did a lot of crying, had my mood plummet, and was so upset that I couldn't eat or sleep. I had to be referred to a new therapist. The one I was first going to try I heard something in her description that made me think she wasn't right for me. So I asked to try 2 referrals out. I met with Dr. Mind and cancelled the other trial appt.

And then I spent the next 6 months fighting with nausea, vomiting, being off meds, horrible work stress after my assistant was fired and I had no help to do 2 jobs, adjusting to Dr. Mind (who while I liked him from day one was very different than my past therapists and took some adapting to), medical testing to help with the nausea, and ultimately disability and the labs that finally were able to be done that showed I was seriously toxic on lithium and then that my thyroid had given up the ghost.

So the blog came about in a very chaotic time of my life, but then I didn't really plan to write about things that were personal and so at least the beginning of that story isn't recorded on here, yet those months were so horrid that there was little else of interest to say.

Please don't say happy birthday.

And I'll write again when I wake up. Hopefully before Monday morning......

Wednesday, January 13, 2010

Stop sign

It all became too much tonight. The terrible hours I've been working plus the PT plus the counseling plus the dr.'s visits; the stress; things not going perfectly with an assistant and stressing about correcting her; other work things; some personal things I don't want to talk about right now; something I said to be funny that made someone very upset and led to a response from them that was so hurtful I cried for an hour (main sign I've reached my limit).

A number of years ago Dr. Mind devised this system of road signs that we used for a very long time to communicate what point I was at in the stages of illness. This is a stop sign. I am going to make some changes. This weekend is totally alone time, no matter what. 2 days of whatever I want. I'm only doing 2 PT sessions next week and am going to try to cut them to 2 days. I just can't handle this having PT 3 days a week and counseling one day, making pretty much every day 12 hours long. It's too much.

Tomorrow I see Dr. Mind. I suspect I'll not shut up for the entire hour. I'm just way, way overloaded and it hit hard tonight with a very long crying session and a hurt response to something I probably should have ignored except that it was so unfair. (I upset my sister by mentioning she's getting a belly. She's in her 2nd trimester of pregnancy, of course she is. But apparently the weight gain is upsetting to her and she was very angry. And very rude especially considering that she attacked one sentence of a whole email about how excited I was. It's like I ruined her ultrasound for her or something. And rather than leave it alone after apologizing for something where I was not wrong I pointed out that I'd happily gain 200 lbs if I could be where she is. It's not fair but she's going to have to learn to respect that she doesn't get to complain about that kind of thing to me.

So I need to try to sleep, rather than cry which is what I want to do, and this weekend I'll get myself together again. I hope. For now I am dreading the next 2 days because I'm too tired to be good at this. i'll mess up tomorrow and not get the early start I want and then i'll be stressed all day, and it will just snowball.

Tuesday, January 12, 2010

Mood swings

I feel about 200 different moods right now. It's because I'm tired and my ankle is hurting a lot tonight (and is really swollen; I somehow angered it and have no clue how), and the baby, and my mom found out she has basal cell skin cancer (which I'd suspected by was not telling her since she had the appt. made), and I need alone time desperately and have to make it to Saturday, and I'm still in shock about Dr. Brain, and I am feeling some weirdness at work, and I'm basically happy, sad, tired, frustrated, angry, scared, relieved, and 14 other things all at once. Definetely moody. I'm not sure that it's really bipolar moodiness, I've put in a very hard month and being tired is not a surprise, but the speed at which they are changing is bipolarish.

Life just seems so weird right now. So much is going on. Even simple things aren't. I have noticed my clothes continuing to get looser. I'm not eating anything very caloric on my very restricted diet which is pretty healthy. People have commented on my weight loss. But my scale hasn't changed. Well, turns out that after I experimented it is just not reading anything lower than the number I keep getting. So it has to be replaced and I'm going to suddenly seem to have lost weight. Weight loss from meds is odd though. I've never had it before, except one wellbutrin which made me so sick I lost 20 lbs in 6 weeks and then had to go off it because I clearly wasn't adjusting. This doesn't make me sick, just not hungry for many foods, and then what I do want is quite healthy. So it's good, but it's just weird. I'm used to fighting weight gain from meds and I expected it since I'm on a lot of Seroquel again and this dose originally made me gain about 20 lbs. But now I'm just losing. A year ago I was a size 20, working on 22. I am now about to need to go down to size 10. When my mom is here next I'm going to get her to take a picture of what the difference in pants size is; I can't get a good one with the mirror. But it's a lot of weight. I am really glad, but I also feel weird. I'm so used to thinking of myself of very heavy that it is shocking to not be. A patient last week said something about "my fat, not that you'd know" and was amazed at what I weighed 12 months ago. I've finally lost enough that people don't see me as fat. Which is good, but odd.

Money is stressing me out. I'm looking into refinancing my mortgage. I'm also desperately trying to find a way to pay off credit, since my stupid credit card company doubled my rate without really giving notice, and that card has a furnace on it. A lot of tax refund is going to be going into the furnace......

And then my mind is back to the baby, that amazing little thing that I swear already looks a bit like my brother-in-law (something about the facial shape) that was sucking its thumb and holding its umblical cord which pulling its' knees up. And it's amazing heartbeat. when that ultrasound goes into 3D it's all you can do to believe that it's real. But it is. It also gave us a clear shot of a little tiny foot and a profile with and itty bitty nose and an open mouth, and a waving hand. It's so incredible.

I am also stressed because I need to run about 4oo errands and have no time, and time doesn't seem to be opening up. Ever.

Who knows what else. I need to go to sleep. PT comes soon and I can't wait for them to see what is wrong with my stupid ankle. Hopefully a night of elevation will make it all better, but something feels weird. I remember saying ouch when I stood up from kneeling once; maybe I twisted it brace and all. Regardless it doesn't feel good.

Like I said, a lot of moods here.

Pure torture

My birthday is later this week. I asked my sister for one present: video of her ultrasound today.

I got home and I have video. Unfortunately this stupid ancient laptop I'm stuck with until weekend at least won't play it. I can do it on my desktop, but I accidentally unplugged my DSL modem while partway through and it's not reloading. So, I have video I can't see. And I've seen exactly enough to want to see the rest.

It's a baby!

Sunday, January 10, 2010

Stress? Me? HA

I wrote this to a friend earlier, when I was waiting for them to come fix my 7 week old furnace. It's all better now. There was a factory fitting that came loose, and a slight error in how the thing was put together. It's working and I'm now getting hot.

But anyway, this is possibly why I am still complaining about anxiety:So you may want to just pretend you never met me.....I think I'm potentially dangerous.
Let's recap:
July 13-14 attend extremely expensive seminar because company will reimburse most of it
July 17 get fired before meeting requirements to have company reimburse
Aug. 10 start new job
Aug. 17 get sinus infection. work anyway
Aug. 25 break glasses totally in half. Pay out of pocket for new ones
Sept. 25 determine with psychiatrist that move to MAOI needed and hospitalization will be needed for a significant time period
Oct. 7 start feeling crappy
Oct. 18 admit that becoming suicidal and need to go to the hospital in a week. Spend days trying to arrange this and ultimately ending with insurance issues that led to not knowing if admission would occur until I got to the hospital
Oct. 25 throw out entire bottle of lethal antidepressants due to wanting to take them all
Oct. 27 sign voluntary committment papers
Nov. 3 leave hospital after scary and miserable 9 days. Pharmacy claims drug that the whole thing was based on isn't made anymore. Social worker announces psychiatrist on medical leave, nobody knows what to do about me. Cry a lot. Discover pharmacy lied.
Nov. 5 social worker gets angry because you called to ask about status of doctor's appointment. Learn there isn't one and because you are so sick don't ask for who to call in an emergency.
Nov. 9 doctor adjusts meds
Nov. 13 back to work. Contact doctor for help with anxiety. Start valium.
Nov. 17 or so, fall hard with only injuries seeming to be bruises and soreness
Nov. 19 furnace is out. Figure out how to light pilot in a 2 hour span
Nov. 21 furnaces totally dies. Arrange for new one.
Nov. 23 furnace installed.
Nov. 27 feel sick after work. Begin vomiting and spend entire night up with vomiting and diarrhea
Nov. 28 continue to hold nothing down. stop peeing. Start getting confused. Can't decide if need to go to er. Develop head to toe rash in a matter of 30 minutes. Go to ER.
Nov. 29 arrive back home at midnight. Return to ER with pain suggestive of appendicitis at 3 AM.
Nov. 30 see Dr. Learn having too many appendicitis symptoms and put on watch with deadline for surgeon visit. No patch until psychiatrist, who is still on medical leave, approves it. Fight with her receptionist. Panic, get psychologist to also call. Have further serious diarrhea; have stool culture ordered.
Dec. 1 go through disgusting stool culture collection then hospital couldn't find paperwork. Throw out sample, get call they found it. Go through trash. Go back to hospital to drop off in pajamas and slippers. Spend whole day being harassed by manager angry that dr. kept out for 2 days.
Dec. 9 start eating a little bit of not chicken noodle soup.
Dec. 10 fall again, this time scraping knee in many places and severely spraining ankle. Doctor fights about tetanus shot allergy (the allergy is bad enough I need a crash cart nearby, but the treatment if i had breathing trouble is contraindicated with my MAOI so they also have to have me on an IV with meds to lower my BP at the ready. I said no shot) and then refuses pain meds due to assuming drug seeking due to codeine allergy and unable to take ibuproferon.
Dec. 17 fight with doctor's office over payments they've lost track of and accusation of non-payment cancelling appt. Refuse to have appt cancelled, yelling about ethics and all sorts of things. Get cast boot.
Dec. 23 start PT.
Dec. 30 start having snowstorms every morning PT is scheduled for 7:30 Am
Jan. 4 finally get small ankle brace. Start feeling slightly better.
Jan. 5 antidepressant starts to work more fully. mood improves and start waking up on a regular schedule.
Jan. 6 realize credit card has drastically increased APR with no warning and the payments that were supposed to be making a big dent in things are useless. Which is horrible since there is NO extra money with medical expenses at the moment. Also get bill that insurance company arbitrarily changed how they paid psychologist visits after going on COBRA and now owe counseling center $200
Jan. 8 complete 2 weeks of having only one day off in a row and working a total of 6 hours of overtime despite 2 holidays. Learn beloved patient has opted to stop dialysis in 2 weeks and realize you'll have to watch him die. Cry.
Jan. 9 learn psychiatrist that you care deeply for has, as suspected, breast cancer. Cry a lot.
Jan. 10 realize you exposed said psychiatrist to a cold that has the potential based on exposure to 2 people with severe colds to turn ugly, 2 days after she had chemo.
Jan. 10 spend day cleaning and organizing tax papers. Feel exhausted. Get cold. Ignore it. Finally realize 7 week old furnace is not functioning. At 8:30 pm still be waiting for repair man.........Discover that there were both a factory issue and an installation issue. Thank God that repair man is thorough and concerned enough to wait it out until he figured out why water was pouring out of my furnace.

Totally, totally forget the other thing to add to this list.........

The post that wrote itself

So last night was about my feelings/shock/sadness for Dr. Brain. I could go on, because this is hard to cope with. I meant to say a few more sentences, but I obviously need to talk about this, so here goes.

Dr. Brain is more than a doctor. She is one of the people I trust the most, someone I've literally trusted with my life many times. She is also the person in my life not related to me who I have known the longest, internet friend who I've not physically seen in years, aside. Almost 7 years now. That may not seem like much, but my life and knowing people has been a bit different. I grew up in a small town where I knew everyone for the first 18 years of my life, but when I left there I really left, and I don't know anyone from that time. I was in touch with someone from school for a while this summer, and that kind of seems to have blown over. Then in college I was so extremely depressed in the last 2 years that I effectively lost all my friendships without meaning to. People were friendly but few stayed in touch after graduation and that tapered off quickly. I haven't talked to anyone from grad school since graduation; my growing bipolarness the last year of grad school really isolated me and it didn't take long to have no real relationships there, especially since our last semester we were only together for like 3 hours/week. And work relationships haven't exactly been my best thing; I talk to one ex-co-worker occasionally, but that's about it. And thanks to being so sick I just haven't developed relationships outside of work. So, in order, I have my family who obviously hae known me my whole life; my one college year friend who I email with who has known me a long time, like too long to do the math right now (this is the same person from my email about quitting last week); Dr. Brain; Dr. Body; and Dr. Mind, and a bunch of short-term relationships. Dr. Mind is about to meet a big milestone; in March he'll have treated me longer than anyone else. I'm sure it's already more sessions than the other long-term therapists, but this will be the longest time period too. But Dr. Brain has been my doctor since May 2003 and was involved with my care since June 2002 as she supervised my therapist, something that she was very involved in because my therapist had minimal experience with bipolar patients. And the goal was always for her to become my doctor; she wasn't my doctor sooner only because I was in a 6 month clinical trial. At the end of the trial, even though it had long been discussed that she'd be my doctor, things were very complex and I needed a doctor who could commit to monthly visits and being available as needed. She agreed to tack me onto the end of her schedule at a time when the rest of the practice would be closed, as long as my therapist assured her I was not dangerous. When I met her I was very nervous; I'd had a great experience in the clinical trial and would have loved to continue with that doctor, which he offered except my insurance didn't cover him. I'd had bad experiences with every previous psychiatrist until the trial, and so I was very wary. She won a great deal of my trust when she started to give me a test I have given many, many times and I stopped her and told her I had the answers memorized. Rather than act like this was remotely a challenge she just made up her own version. She was the first person to test my cognition in a way that showed me without her saying that I had cognitive issues. (Could not name the vice-president was one; I remember how horrified I was at that, but it made me realize there were reasons I had trouble with some things).

I remember the first time I realized exactly how different she was from my prior doctors. The doctor I had for nearly a year prior to the clinical trial, the one who saw me for 8 minutes per month and would write that I was doing great, just a little depressed, when I was somewhat suicidal, when I couldn't eat or even bother to put on pajamas before crawling into bed every night, had barely ever bothered to return calls. The only one she did return was after I had spent 2 solid days crying after my "friend" decided to try to test exactly how suicidal I really was, and then all she did was prescribe ativan. Which helped, but she didn't assess ever how sick I really was.

I had a really hard time back then making myself call for help. I didn't do it alone; I did it when I was pushed by a friend. Sometime in the first months of seeing her I called her and left a message. I expected to either hear nothing or to have message from a secretary. Instead, at 10 PM my phone rang and it was her in person. That continued; she always called back. Eventually she got email access for her practice and then I was/still do, able to email her directly. Which I've done many, many times over the years. And she's taken time to respond, even sometimes just to offer encouragement when she could have ignored something that wasn't medical.

When my sister got married I was in the midst of starting Risperdal. It had been helping at a super low dose (I had to start extremely carefully because I'd been on 2 other antipsychotics and had very bad reactions to both, one of which puts me at risk for recurrence of that reaction, so all antipsychotics are treated with care and we tried to avoid them. I was already depressed, I was coping with the loss of my favorite patient ever, a man who had no family and who I'm sure I'm about the only person who still remembers him, and my sister's bridesmaids and my sister (who was just stressed and taking it out on me as she had her whole life until then) were rather mean. One of the bridesmaids kept pushing me around and getting mad at me for being different than they were. My sister was mad because I didn't wear as much makeup or what I wore was too subtle or something. Everything I said or did was wrong, and I wound up absolutely humiliated because my very shaky hands from high dose lithium made me spill a few drops of Pepsi. To me I was used to that and typically just would wipe it up and go on, but apparently my doing everything wrong all day long was too much for one of the bridesmaids, who grabbed my can from me and poured me my drink. They told me what to do, got mad at me for not doing things as they said, and were generally angry at my personality, which is more quiet. (Keep in mind also that I hadn't been a bridesmaid until a week before the wedding when one dropped out and didn't want to be but felt obligated. I also was having without realizing it a massively bad reaction to Risperdal with enormous amounts of swelling and a dangerously high blood pressure, but that wasn't discovered for a week, and that it had gone on so long wasn't understood until the wedding pictures came back and I was extremely puffy. Guess what pictures I hate seeing now?) After the wedding I called her answering machine and left a long, tearful message telling her I needed more meds asap, that it had been awful and I was miserable and that I thought my relationship with my sister was probably over forever which would just add to my depression. She was in immediate contact with me, extremely sympathethic and caring. That next 6 months was dreadful as I tried to figure out my family and went on and off of many, many meds trying to get my blood pressure under control. (Finally putting me on a BP med was Dr. Body's first act as my physician). That year Christmas was an unbearable thought. She called me Christmas Eve to be sure I was ok. (She's Jewish so it's not like she was in the midst of a party or anything, but still....).

She has continually gone out of her way for me. She's fought insurance so many times I can't count, right down to telling my disability case manager in front of me once that the disability company was making things so much harder for me that if they didn't stop throwing random obstacles at the case (once something was denied because she wrote outside the box because she was out of space) that she'd be forced to keep me off work significantly longer due to my inability to handle the stress they were causing. That time she also called HR at my company to let them know that they had the worst disability insurance she'd ever dealt with. Another time a med was denied by my insurance. She faxed them every single day until they approved it, which a notation that said "for life" because they didn't want to deal with her anymore. She's spent a minimum of an hour per month with me, often longer, sometimes 2 plus hours. She's missed precisely one month in the almost 7 years, and that was for her mastectomy.

When she came back to work after her surgery I had been taken off the patch until she approved it because of my rash when I was sick. I had left a desperate message as had Dr. Mind. I was the first patient call she returned.

Basically, this is someone who really cares about me, and I care a lot about her. I cannot imagine having another doctor. In fact, another doctor would be very difficult for me as she makes a huge effort to see me without disrupting my work schedule since my visits are so frequent. But mostly it's because she is a doctor who makes sure I know she cares about, even loves me. And that is a precious thing.

This is so far from what I started to write tonight, but there it is. I guess I feel no separation from this as I would have with so many doctors/therapists in my past. This is someone I care deeply about who is going through something awful. And right now that matters more than anything else, including the things I was going to say about what she thinks of my current status/response to Emsam, the fact I exposed her to a cold that may be a very bad one given my exposure to 2 people who had what may have been influenza (which I kind of hope since they're better now and I have had the shot for both kinds) or might just have been bad colds. Whatever it is, it is not what she needs with a weak immune system. Nor is it even important that my BRAND NEW FURNACE BROKE (in caps because I'm mad; did not need this) and the repair people haven't called back and it's freezing in here and my furnace is only 7 weeks old and I want to go to bed and instead have to wait for them to fix it.

Saturday, January 09, 2010

I hate being right

My exact suspicions were confirmed today. Dr. Brain has breast cancer. That seemed to make the most sense from what I've know was happening, and as soon as I saw her I knew I was right. She's doing ok, but I know her so well that I could see differences and I also have seen enough people on chemo to know what the subtle effects are. And she had on a wig, which I only really knew because she's had the same hairstyle the entire time I've known her and I knew that her hair couldn't be cut the way this was because it's not thick enough.

She says it is a very early, very treatable kind and she'll be done with both chemo and radiation in a few months, but I'm so scared and sad for her. She's a doctor at a top hospital in the world, so that helps I guess; she's got access to the best care anywhere. And she's doing well several months into it.

But I also know I just lost a friend to the same disease, albeit a more virulent form, only a few months ago. And my friend was my age.

I also feel like I'm the worst possible patient to have when you are in that situation. She says it's fine and she can handle my needs and she knows them better than anyone, but I also know that I'm one of the most involved cases she's got and although I'm starting to feel really good I also know that there's no promise I'll stay "easier", since I don't really get out of the hard category just in terms of I have to be seen frequently, often need something between, etc.

Please just pray for her. If you do that, of course. In fact, please put her on any prayer list you know of; I kind of want to feel like I know she's is surrounded by love, and I know how effective all of you were for this when I was so very sick.

I'm going to take some meds to calm down, because I've been crying for a long time now, and then I'm going to start trying to figure out how to be a "good" patient and how to trust God that this can be ok. (Please understand that as I talk about this over time this is going to be very hard for me to do. I had a friend die from breast cancer in October; she was my age. 34. She had a very vicious type and knew she was terminal for years, and this is totally different, but it's still too recent. And I had a psychiatrist die before, so it's not like I'm not well aware that things happen. His death was either a weird accident (how it was presented) or a suicide (how it sounded), but I figured statistically that would keep my doctors safe........

Thursday, January 07, 2010


I'm not really sure what to title this.

First, posting may be a little sparce. The power port on my laptop died. This leaves me with my desktop that is so old it barely works and my mom's old laptop, also so old it barely works. This laptop is the slowest thing EVER and if more than one window is open it freezes. As far as I can tell since it freezes for other reasons too. We'll see what my patience level is until my real one is fixed or replaced, depending on cost.

Second, I've always been very private about where I live. Well, in a few days I am going to show you something that will tell you anyway, and it fits into this story, so here it is. I live......drumroll.....in Ohio. A very rural part. And know what? It snows in Ohio. Some years more than others, but every year at least one or two good storms. This year seems to be a heavier year, which was predicted based on our milder summer. So I'm getting lots of practice driving in snow.

Since I went to grad school in a lake effect region of Michigan with a Ford Festiva (ie a small box) as my car, I am a good snow driver. I also know my car's capacity in the snow. I know that it can do just fine as long as I'm very steady, but I can't change lanes across ice, I can't speed, and I have to be alert.

Tonight I decided that there should be a required snow driving test to be licensed in states with snow. The first part of my drive home was actually good. The roads were terrible in that part, but people were being very safe, leaving good gaps, and putting on 4 ways whenever an accident blocked one lane and slowed things. As I got further from the city the roads were less icy and more just snowy and slushy. I wasn't having any feeling that I was sliding or anything. You couldn't see markings and slow was in order, but the car I was behind for the last 40 miles was AWFUL. It was a heavier car, so I know if my Corolla had traction it should have. The driver went no faster than 28 for 40 miles, and every time they went down a slight hill or curve they hit the brakes, and when the hill was steep they rode them. Now, if you are going that slow and you keep hitting the brakes, every car behind you has to also in order to ensure a safe distance from you, which then has to be increased because you're more likley to skid. So i got to drove 20 mph for a very long time. There's two ways into this town and I decided to take whatever he didn't. Thankfully he took the one I didn't want to and I was easily able to safely drive double the speed he'd been going, without using my brakes, and i went through town, which is much messier as the streets are untouched, without going less than the speed limit. So that person was being a total chicken and I was stuck because the left lane was too messy for my light car to handle it.

I talked to Dr. Mind tonight more about my feelings that not really resolving the hospital situation has created a lot of the depression that's left. I left the notebooks and papers I meant to take to show him on my bed so we'll have to do that next time. But he said I seemed better, right from the outset of the treatment. And I think he's right. Oddly I'm waking extremely early suddenly and am awake enough to do housework and stuff. I think it might be the depression improving but I'm not even bringing that up yet. I do not feel manic at all, so I think that's ok.

Cats are so weird. I have my broken laptop sitting beside me on my bed in a bag because I was getting some info off it for my mother, who has to call about the warranty because it is technically her laptop. My cat is much bigger than the bag, yet he has curled up on it and is dozing with this look like "I HAVE to lay on this, I've never laid on this before".

Anyway, I need to throw in a load of laundry, and hopefully by the time I get back google reader will have loaded so I can read my feeds and go to sleep. As I said, I'll post as I have patience with the computer.

Tuesday, January 05, 2010

That wasn't fun

So today my patient told me he wants to kill himself and how. I had a lot of lead-ins to that, but I'm too tired and overwhelmed. Nobody paid much attention. In fact one nurse laughed and said "he can't do that here". Duh. But he won't be in the nursing home forever. And when he goes home it will take 30 seconds to do what he's planning.

I know professionally how to handle this kind of thing. I did what I could. But nobody seemed to get it, that first of all if he has a plan he is serious, and second of all that if he feels like that he needs HELP. He needs to go to psych like 8 hours ago. Instead they are ignoring it, saying "he's just like that". So HELP HIM.

I never realized until today how desperate I felt those last few months. I knew how scared I was, especially on the day that I knew I would do anything to hurt myself if I only had access to more than a paper bag and an ink pen. But it had been a long time since I went through a long period of feeling suicidal, and probably this was the first time I was actually feeling suicidal and really thinking of it. Before it has always been either short-lived or in one time that scared me into treatment, I realized I was completely serious in my intent to kill myself the next time I became more than mildly depressed. At that time I knew only that I had recurrent depression, so I knew it would happen and that when it did I would not be able to handle it again. Telling someone I felt like that was awful, and over the next few months I swung closer and closer to hospitalization. Then the clinical trial happened and I made it to the next hurdle. From then until these last months I've been suicidal and I've even been suicidal for days or weeks, but never with the same steady intensity that it was this time; before it always came and went. This time I thought about it plenty and knew what would work. That's how my patient is. And everyone blew it off as he's safe where he is, he's just feeling old, maybe he's having family issues. OK, so why doesn't someone besides me see that it might be a good idea to HELP him with these things??????????

I'm so angry, and so confused because after all this is a touchy subject for me and I can hardly run around work yelling about how they don't know what they are talking about and that from someone who just got way more suicidal than anyone who knows her inside and out thought she could, it should be taken seriously. And that if he's thinking this, whether he is safe or not, he feels horrible.

I'm going to just go to sleep and try to forget. I woke up at 4 am this morning, I think from a nightmare maybe, and got up and started doing things. I got home at 8:45 or so. I'm worn out and tomorrow is a nice early PT day. Bleck.

I need a day off to process this........

Monday, January 04, 2010

To Julia

Julia wrote a post today that made me cry. Which it seems we're taking turns doing to one another.

I am just so glad that I can help. I remember 3 1/2 years ago, when I was first starting to see that I was going to live, not that I could live well but that I was not going to just curl up and die, I reached a point where I really wanted to find a way to use my illness. Out of long talks about different ways to do this, this blog was born. I was very reluctant to do this because I know that my anonymity goes only so deep and that frightened me. Not so much now; if someone figures out who I am and does something bad to me because of it then that wasn't a situation I should have been in to begin with. And in my typical fashion, a mere 3 months or so after I built the page I started writing, marking my 30th birthday with my first post.

What I wanted so much was to have to way to show people the thing that most kept me from being diagnosed and treated years sooner than I was. Despite my degree in psychology and further training in psychology for my master's, despite my acute interest in psychology that means I've read a lot and know a lot, there was something I totally missed understanding. I thought that if you were seriously mentally ill that it was your life. Grad school especially enchanced this, with so much time devoted to all these wonderful day treatment plans that were alternatives to institutionalization for people with bipolar and schizophrenia. There was not one time that I was introduced throughout my education to the concept that mentally ill people can succeed. Therefore, I lied and hid my symptoms for literally years to avoid diagnosis. It's not like I coherently had thought about being bipolar, it's that I made sure nobody suspected it. I so easily could have been diagnosed after the summer before my senior year of college had I been honest. But I wasn't, and instead of getting lithium I started the years of destructive antidepressants. Two years later bipolar was suggested to me by a new psychiatrist. Her timing wasn't good; my prior doctor had died suddenly and she was the replacement, and so meeting her was weird, and then she didn't take time for me to be comfortable before she was throwing this new diagnosis idea at me. I pretty much ran away and she never even documented the thought. She really did a disservice there, I really wish she'd tried again with me to explore the possibility. And it wasn't for another almost 3 years that I managed to figure it out and come to terms with it myself. And this all was mainly because I thought if I were bipolar I'd lose the life I'd worked so hard for.

So all I wanted when I started this blog was a place to say, hey, look at me, I'm really mentally ill in a bad way and I'm still a productive adult. That can happen for others. It didn't play out quite as I'd hoped; I thought then that I was on a continual improvement. That delusion lasted precisely 9 days, until my next counseling appointment when I found out that my therapist was leaving the country in 4 weeks. That worked out, because that is how I got connected with Dr. Mind, but it was the beginning of a seriously horrible period of time that lasted for years before I had my incredible spell that was broken by the recent months.

And I have gotten to do that, and the results have been priceless. I'm really hoping that the things I've written in the last few months help some scared person about to go in the hospital someday; I needed something like that and could find nothing. But Julia and Gage are special to me, special because I get to see Gage have the thing I never had, a stable, loving family. (Gage and I are a lot alike. Totally differernt situations, but I think very similar PTSD and I suspect similar personalities)And Julia cannot remember so often that this is the best thing she can do, because she wants to make it all go away. So anytime I can help her (or anyone) see that loving the hurting person is the best medicine ever, I feel like there is actually some purpose in what I've had to go through.

The story I told Julia was a pretty simple one, but one of the most meaningful things that has ever happened to me. And I've never shared it here. To tell it here involves some twisting, but essentially there is one person who just sort of decided to care about me when I was an angry, confused kid trying to sort out life outside of my seriously messed up family. And that person outlasted me being a horrible depressed kid, a moody young adult who would attack with all claws several times a year when things got too hard, and thus far every episode of me being a fully grown, extremely sick adult. I don't know how many years it took for me to to learn that I can't get rid of this person just by being bipolar (even before it had a name). Because for the rest of my life everyone had moved away from my moods. I've got a better relationship with my family now and my illness is even accepted and somewhat understood, but back then let's say it wasn't a surprise to anyone when I moved 800 miles away for grad school. By the time that the event in question happened, this person had been letting me be my very moody, very unmedicated self for 7 years. And I had almost nobody who was even trying anymore to be my friend.

That person had been very ill with something physical, in the hospital, and on strong meds. And I was being horribly needy and hating myself for it. Essentially I needed a therapist, but I had had so many bad experiences (about 10 in a row) that I couldn't make myself try again. It took becoming suicidal 9 months later to do that, and it was what then led to diagnosis and finally treatment. Anyway, I finally reached a point I felt that I was too hateful to have to deal with and that I couldn't stand the guilt of this person having to handle me when I was like I was, something they certainly never bargained for. So I wrote an email telling that it was over, that I quit, that I wasn't going to hurt them anymore. I got back 2 simple words "I don't". That was about 8 or 9 years ago now and that person still hasn't quit.

That 2 word email was one of the most meaningful experiences of my life. We both knew I didn't mean it when I said go away, but the only response that let me feel how I felt, as self-destructive as that was, without doing anything but acknowledging that and letting me know I was still cared about was "I don't".

I think that when you are dealing with someone who is mentally ill those words are the most powerful things you can give them. Knowing as I do now that I don't just have one person but a whole TEAM of people who are not going to quit makes me confident that I'll be ok. But back then, all I needed was one person to let me know that I was not so awful that I wasn't worth knowing or caring about.

Whether it is blatantly said, or shown through actions time after time after time, that is what I think people dealing with mental illness need more than anything.

Sunday, January 03, 2010

Dr. Mind is SOOOOOOOOOOOOO lucky/decisions

So I've been thinking a lot. I fell asleep without meds yesterday (marking just about the first day without any anxiety meds since I've been home except when they wouldn't stay down), and so I'm actually awake today. I'll probably take a nap later, but I've been awake for hours. Which is good. I've desperately needed time to just think.

Decision one is simple. I can't find Dr. Body. I therefore have little chance of getting my script for a new ankle brace signed. If they haven't heard anything tomorrow I'm going to suggest that while I know they can't just give it to me, they can't stop me from ordering it myself (it's inexpensive) and if they'll just tell me what size I'll do so. I'm ready to be out of the cast boot. I'm in much less pain now, I'm not so swollen, I can walk on slightly uneven surfaces at home without anything, and the cast boot is holding me back.

Decision two....I'm writing out questions for Dr. Brain for my appt. Saturday. I have a lot, because there are things about the hospital I need to know will never happen again.
This forces me to look through things I wrote during and after.

I'm also getting so very tired of the constant anxiety and low-level depression I've been living with. There's one more increase in Emsam, but they try to never use that dose. Plus I don't want to be on the top dose of anything. I could take a little more Seroquel maybe, but it's never been a super antidepressant for me. So I need to deal with it. And the thing it comes back to is that the hospital was traumatic. Very, very traumatic.

I'm going to let Dr. Mind read my journals. I have to do deal with this, with all of of it, and I think I need to show him the whole to show him what is bothering me still. I know we've talked about this to the point of boredom, yet I am not done. So, I'm going to see if he can find the issues himself since I apparently am not saying what I really need to say.

I think this is vital, because sometime this spring I'm going to have a procedure done that will require (regular, not psych) hospital contact and I know just being in the hospital is hard right now. I had a hard time with it in the ER with the stomach virus. I had an even harder time in the urgent care center because they treated me obnoxiously. This procedure is one that is normally done in a doctor's office (it's called a cystoscopy) and all it involves is a camera into the bladder to see why I pee out a lot of blood, to be sure it's "just" the huge cyst on my kidney (I only know it is huge thanks to overhearing the ER nurses), but because of my history it's way too traumatic for me to tolerate. I've been refusing to do this for 4 years, but the blood is more now and I saw how much there was when I was dehydrated (huge clots, worse than any UTI I've ever had), and that was enough to know something IS wrong and I need to know what. So I told Dr. Body that if he will find a doctor who will do it under twilight anesthesia with a lot of Versed (med that makes you totally forget), and if I'm given sedation from the time I arrive until I leave so that I have no memory whatsoever and no awareness, that I'll do this. There's apparently only one female urologist in the area, so he's going to talk to her and then we'll do it after I'm firmly into my new position, whatever that might be. I'll have to deal with this emotionally as it gets nearer, but right now my idea of hospital is panicky.

Plus the truth is someday I'll be back on that unit and I need to be ok with that. Honestly in a lot of ways I'd be fine if I'd know that one nurse wasn't there, but that's unrealistic. I just know that she made things so very much worse. But I don't get to control that........

Anyway, gotta get ready to go to my mom's for a while.

Friday, January 01, 2010


When I was trying to remember the first half of the year I realized something. I write this blog, which is very long, and I rarely look back. I look back if I want to link to something specific, or sometimes if I'm trying to remember when something happened, or how something was sequenced, but I don't usually really use it to look back. Which is funny, because I would tell you that I use it as a way to have memories. I know that whenever I'm sick I block it out or don't process life well enough to remember much. Which is also just a defense because I don't need to remember some thing, as Dr. Mind would rapidly interject here. And in a weird way I've gotten to the point that I don't worry about remembering some of it. I let that be his job. Which shows how far we've come in the last almost 4 years.

But do you look back? I'm curious, because I always think that this is a way of having a record of my life, but I really don't use it that way.

It may not be good to be affiliated with me

The 3 people I talk about most here probably are Dr. Mind, Dr. Brain, and Dr. Body. Dr. Body doesn't usually come up too often but certainly has lately as I've had contact with him at least weekly for 2 months.

So, at last count Dr. Mind is very, very sick with something cold-like and will probably be feeling better this week but still has had a rough time and still came to see me so sick he didn't shave. (I know I keep talking about that but it has me awestruck for a variety of reasons.)

Dr. Brain has something mysterious going on that I'm hoping she'll explain on some level next week because I'm worrying to the point of tears about her. I just have a very bad feeling about the things I've put together.

And Dr. Body? He's disappeared. A while back he told me in confidence, like as in hadn't told the people who worked for/with, that he was going to be changing practices. He said it wouldn't be far away. Then he told me it was for sure, within the next 3 months, at the end of November. The last time I was there, December 10, there was a big insurance screw-up and I was furious and he indicated he wasn't thrilled either, and just said "well, this won't be much longer". Then Christmas week I called for lab results, results I am always, always called with, and the answer was that he was not available for a vague reason and his partner would take care of it. The med was then called in, but I believe with the value in question looked at erroneously. I know this because it happened in the hospital and has had me messed up for months now (they used the wrong thyroid value and drastically lowered my medication. Dr. Body said that this was more than likely wrong and that he'd not be able to change anything until I'd been on the new dose a while. This result was supposed to give us the answer. And I wound up on even less med. Meanwhile I've got all sorts of thyroid symptoms.) I faxed a question over, as I have done a zillion times, and got no answer. That doesn't happpen. Also, my PT is not getting a response with a request to change my brace to something less than the cast boot. And I've been searching and he is not on any insurance lists for any insurance I can come up with. Therefore I suspect he left his practice sooner than anticipated.

So, all of my doctors are messed up. I'm praying Dr. Brain has my labs and maybe can figure out my thyroid. I don't know if she can or not without Dr. Body's records, but I don't want to go through however long without thryoid meds. And I'd really like out of the cast boot sometime this century. The delay hasn't been that awful since I've had a lot of pain since twisting it Monday and I may have needed it a few more weeks, but I'd at least like to know the new thing is an option as soon as I'm ready. I want to wear 2 shoes at the same time again.........And the new thing is pretty supportive apparently so it's not like I won't have anything. I know there's weaning involved, and again, I'm ready to start.

I'm having trouble believing that his practice isn't bothering to tell me/my PT that he's gone, but there's also a slight chance that the mess with my billing was a factor in him leaving sooner because I kind of got the impression he was pretty upset and disgusted, which makes sense since I'm fairly sure that denying an appt. that potentially could result in harm to a patient (ie immobilizing a joint longer than minimally indicated) with 3 hours of notice to the wrong phone number based on a MISTAKE on the office's fault is very, very unethical. (Or even without a mistake). Which I had told him. I have no way to know this nor will I probably ever know, but nonetheless I'm very stressed. I guess I'll have to have the PT call if they haven't faxed back the order, and if that happens then I'll know. I just wish he'd ethically been able to tell me where he was going, because not having a doctor really makes me nervous, and I have no clue when he starts the new practice. Unless he said 3 weeks instead of 3 months, which means he'll be at the new place soon and should show back up on insurance.

Regardless, my doctors are causing me more stress than anyone else in my life.