More quotes

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

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

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

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

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....

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

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

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.

Good

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....

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.