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

Wednesday, November 30, 2011

my poor doctors

I just had to email poor Dr. Body.  Why?  Because the dehydration from the toxicity caused dry skin.  It's a side effect that I was blaming on my thyroid even 12 hours before hitting the ER.  Well, that's under control, except for my head.  My scalp itches like well, I've never had chicken pox, but they say it is itchy...it's not dandruff, there aren't scales.  Just tons and tons of dry skin that I keep scratching, making my scalp sore but not stopping the itch.  I tried treating it with OTC dandruff shampoos and made it much worse.  Really hope he has something because if he doesn't I'm going to be forced to shave my head and cover it with cortisone cream or something.  I can't tell you how crazy itchy I am, only that it needs to stop.

And my med is about to say goodnight, consistent 100% with last night.  That is good as long as it works for real.

Tuesday, November 29, 2011


My new med got me more consecutive sleep than I've had in a while.  Then it wore off and while I feel good to have rested I am back to being the anxiety queen.  This is in large part because I'm unsure what my work status is.  I had called in about COBRA costs as I thought I had been sent something telling me I'd be changed to COBRA.  But instead I'm still on regular status even though my leave ran out in Nov.  The tactful person said "you haven't even been "termed"" but which I assume she meant terminated.  So there are emails out to work asking if they know what is going on and also an email out asking if the need for another month off is going to be the end of me.  I don't know what I expect.  The news that I can't come back for a month can't be good. Yet I truly can't and can give proof that a lot is being done to find out what's going on and how to fix it.  I just need answers and while expecting them immediately or even today is a lot I am so tired of waiting for the other shoe to drop.

More later.  I think I said I'd tell you more about yesterday and I don't remember what I did say.

They helped

I will tell you more tomorrow because I didn't get home until after 11 and meds were 2 1/2 hours late and I need to seriously work on relaxing but Dr. Brain spent 2 hours with me and had re-read my garbled writting enough to get that I was saying I felt I needed a mood stabilizer before ltihium.  So we found a perfect choice that I then couldn't take because it is about the only thing on earth that interacts with Seroquel, so  I'm now the first patient she's had on a new antipsychotic (not approved yet for bipolar but desperate times).  Those hours helped me finally draw a picture for Dr. Mind that helped break down why I want to die.  And the Dr. Body wrote back about something minor and apparently he's dropping Dr. from his name now too.

I'm hoping to sleep both because of the new med and because that was a VERY long day.

More tomorrow.

Monday, November 28, 2011


I think either the antihistamine that has been doing such a nice job helping me sleep lately made me agitated last night.  It eventually did in the psych stay too.  I'm glad to see Dr. Brain today. I took a full extra 2 mg dose of klonopin at 1 and still couldn't sleep despite being sleepy. I finally took a sleeping pill at 2 and I think was asleep by 2:30.  Problem was the cat woke me at 7 and I could not get back to sleep.  All these "MUST DO" things kept me awake and so I slept an hour and a half on the phone taking care of student loan stuff, insurance stuff, hospital billing, and a part for my car that is preventing oil changes because Walmart stripped the screw using the wrong tool then lied.  I wrote the check for my car payment.  I checked in with disability about my check for last week.  Etc.  Eventually I got myself to relax enough to sleep and napped for a few hours.

So now I'm going into my trip to see Dr. Brain tired. This will change to mania eventually but I wish rested were an option.

Hoping for lots of great help today.

That helps my tiredness

And so naturally after fighting to stay awake at 6 PM, and even taking meds a little early because I was so incredibly sleepy, it took a full extra dose of klonopin plus a dose of lunesta to settle down enough to sleep. And then my cat decided I should be up about 7, so now I'm hoping to get tired enough to sleep more.I hope or today will be too long and I'll have to cancel Dr. Brain.  I may call and see if they have anything different, but that probably would mean goign up tomorrow and that's not ideal either.  Nor is skipping this appointment.

I have a pretty understandable list I can shove at Dr. Brain with a "here" this is why I am struggling if I have to.

I did somewhere in there last night realize that my feelings of wanting to quit and not live anymore are more complicated.  I simply wish that I hadn't started hallucinating and had eventually had the toxicity that I just wasn't here anymore.  I keep saying this and it is true:  I won't harm myself.  I will, however, have to fight myself to not get pulled into the swampy area where this becomes hard to not think about.

I'm now in the midst of a student loan mess.  I put the huge one on forbearance when I got sick.  The forbearance ran out without my realizing it and now I can't seem to get it back on forbearance. So here in a few minutes I have to call in.  I can think of few things I'm less interested in that being on hold.  I also need to call my insurance company about why I can't logon to the webpage, my HR department about somethings, and something else.  Oh, I know, I somehow haven't gotten disabilty pay that should have come through last week. Since I have a car payment to make today and several things to pay in the next couple weeks that must be done I really am anxiuos about this.  Which reminds me to call Sears........Best do that now.

More after the doctor unless I die of mania.

Sunday, November 27, 2011

No idea what I'm about to type

Mostly, I am T.I.R.E.D.  I've been exhausted since I got out of the hospital, and this is normal plus they didn't let me sleep there via withholding meds, but for whatever reason today is even more sleepy than before.  I honestly can't remember when I got up.  I've done only a tiny bit of anything knowing I was tired.  And a minute ago I looked at the clock thinking surely it was nearly pill time and it is not quite 6:30.    In the last hour my activities have been so tiring as: reading, starting the washer and dryer (didn't even have to flip clothes), and showering.  Otherwise all I've done is start to prepare an area for my nativity scene (so excited.  I asked for one years ago and was given a gorgeous one.  Unfortunately the next Christmas I had 2 kittens and there weren't many survivors.  So last year my whole family bought me parts of the Willow Creek nativity set.  I just have to find places for my pictures of my niece and I can put it out.

Tomorrow is going to be a long day.  I have to leave about 1 to get to Dr. Brain's for my 3:40 pre-appointment.  Then I'll see her and then I'll go to see Dr. Mind for a late appointment and then drive home.  So I will be home around 10.  After 10 days of doing nothing that's going to be a LOT.  I don't know why I scheduled Dr. Mind at 8; that's an odd time for me.  I suppose he didn't have anything open although I thought I scheduled this pretty far back.  Who knows.

I had a weird dream (several in fact) last night.  The weirdest was that I was at some store and saw someone I thought was familar. They came over to my car and made sure it was me.  It was my so-called-friend who decided my illness makes me not a Christian and her husband.  The weird thing was that we had a conversation and even drove somewhere (in my Forester which I kept calling a truck(?)) together amiably.  But then we got to a field somewhere and she went with her husband and that was it.  It was like my brain had the unusual idea we should try to re-connect.  Given she thinks I'm the spawn of Satan I don't think so, but I haven't dreamed about her in years, nor consciously thought of her in a long time. Too bad too, this was always our fun part of the year (we had fun constantly but Christmas was great.  We'd watch the Mup**pet Christmas Movie and got to know it so well we both could recite most of it.  My senior year in the last weeks before serious depression took away my life for about 6 months we were laughing at our favorite part (every time someone comes in the slip on ice and fall and everyone yells don't step on the icy patch).  So I leaped up, grabbed paper, scissors and a marker and made an "icy patch"that I taped to the floor inside the door so that every time someone walked in and asked what that was we could yell "don't step on the icy patch!".  It was funnier then).  We had a bunch of Christmas traditions and sadly I don't remember any others.  Christmas service in our school chapel.  The chapel at the school I went to is one of the most beautiful I've ever seen.  The Christmas service is something you get to very early or you don't go.  Oh, we did stockings for each other and you never knew when there'd be something in there.  And an advent calendar, the first I'd encoutered with candy (we had a hand-made one as kids).  We even mailed stockings to each other when I moved to Michigan and she finished her undergrad degree.  I have no idea why any of this is coming up today.  That dream was weird.  Every so often I think of how easy it would be to facebook and see if perspective has grown as she grew up.  But the hurt if not would never, ever be worth it.  Especially right now.  Oh well.

As I think about it the toxicity/screwed my meds have done something to my sleep.  I rarely remember dreams that aren't more panic attacks than dream.  My sleep study showed I spend almost no time in REM sleep.  That's typical with the meds I'm on. But lately I'm waking every day aware of dreams.  It's very odd.

Anyway, I don't even know what else there is to say.  And I need to try something else as typing is putting me to sleep.  I should just take meds and go to sleep but I try so hard to keep med time consistent that I just can't, plus it's just as likely that I'll take them and still not get to sleep until midnight or 1 AM.

Probably won't post tomorrow unless it's before I leave or I'm really wound up when I get home.

Saturday, November 26, 2011


B wrote:
Good Morning, Jen,

I respectfully disagree with your thought about never returning to work. I am sure you will. I am not sure when, but your working life is far from over. Clearly, I have no crystal ball. Nor am I a physician. Although it SEEMS like you'll never get a handle on this, I believe you 100% will. 
You know, when I read of what's happening and remember all that has happened within the last year it sometimes seems obvious to me. Again, I am no doctor - just an observer. Here's what I see...
Within the last year your body has gone through bronchitis, asthma, uterine problems, no sleep for weeks on end, appetite changes, lots of pain and then surgery. And those are just the PHYSICAL THINGS that have happened. Along with all of this comes new medicines, changing old medicines, inhalers, patches, surgical anesthesia… again, purely PHYSICAL things your body has endured.
If you look at it this way, is it no wonder your mental health has also suffered? Jen, even if you didn’t have bi-polar, do you think you’d be a-ok now? I don’t think ANYONE would be ok. Seriously! I know I wouldn’t, and that is fact. Because, these physical changes take a HUGE emotional toll – HUGE, HUGE, and HUGER.
\And now let’s consider these additional meds, physical symptoms, lack of sleep, huge anxiety etc etc etc have totally MESSED with your bi-polar meds/situation. Dear Jen – I think your body and mind just can’t keep up with it all! If I were your patient and told you the same history, do you honestly think I’d be all fine and dandy? No way. Sweet Jen – NO ONE WOULD!!!
Oh my gosh yes, this is an easy explanation from me – the one who doesn’t have to live through it and suffer through it. But can you take a step back and pretend it is someone else we are talking about? I am curious what you would say if it were me. Or Michal. Or a patient. 
I think you’d say, “yes of course you will be better” and “yes, of course you will work again after your body and mind have regulated themselves. You’ve been through the wringer and it takes time to sort it all out.” And then you’d pray for us. Just like we pray for you. -- am I close?What else would you tell us?

B, you are right.  I am still unsure about work; I'll work somewhere, somehow, but I am becoming less confident in my ability to go back to working full-time with nearly 3 hours of commuting.  Since I love my job and can't stand the idea of leaving because of my health I just feel like this is taking the career I worked for from me.  I work in a special place.  There's plenty of home health jobs and I'll find one if I need to.  But it won't be like what I love now.   But my body has been through hell and back and my brain suffers collateral damage along with having had its' own hits.  I know this.  I am just tired of saying "I'll be better when ___".  First it was the first month of whooping cough.  Then it was the 3 months it can last, although asthma was clear before that time.  Then it was the cold air.  Then it was after a pulmonologist will treat me.  (Which did make a difference).  Then it was after my surgery.  Then it was after the akasthesia.  Then it was after the Neurontin left.  Then it was when the depression caused by all that was over.  And when that point finally came I thought "Thank God, there are no more excuses".  And thus began the toxicity.  I no longer hear these words as the sound reasoning I know they are.  Instead I hear excuse after excuse.  I think of someone who doesn't seem me routinely or who has not known me except for the last 13 months and I can't imagine this seeming believable.  From that perspective how can it seem like anything but someone either exagerrating, making things up, or trying to get out of things?  I have trouble with knowing if I saw a patient's diagnosis list and it read like mine I'd tend to be almost as unwilling to just accept it as the pain management doctor who treated me last week only because he theoretically is a pyschiatrist, although he hasn't done that since I was 3.  

This all brings back memories that are hard to handle.  For years I juggled issues like this one after another and work and it was so hard.  I was constantly going through med changes, I fought to work every minute I did work, I really couldn't keep up, and I didn't do anything fun or do much ever besides see Dr. Brain montly and my mom sometimes.  So all of this stuff in the last months has just made me relive that and as I accept I'm not going to be well this week I fear what happens next.  The last 2 years are the only time I've ever had much control over how I felt, what I did for fun, how I slept, where I went (couldn't stand stores at all for a long time and was doing ok until this, etc.)  Now all that is stuff I don't have.  I know it may come back, probably will come back.  Dr. Brain told me today that it is more likely that I thought she originally was implying.  But I don't have any experience with something like this happening and then not losing something.  I have never been in this kind of position and had things work out, except for when the right meds finally decided to work.

And I am angry.  I want things to have a simple solution.  Those don't really exist for me it seems.  I think I had come to believe that I'd paid my dues, a feeling I've had before, and then it turns out that everything is out to get me again.  Dr. Body has told me he's fine with giving me work excuses for things that might not cause other people to miss work, because I do have several serious conditions.  He reminds me of that often because otherwise I convince myself that all of it is nothing.  But that also just makes me feel hopeless somehow.  Last week in the hospital when I came into the room and with each of 90000 trips to the bathroom I would look at my roommate and think she was at least 75.  She was 49.  Due to diabetes and I don't know what all she was in a similar condition to someone much, much older than herself: blind, double amputations, dementia, burns on her hands from smoking that she couldn't feel, a crazy infection, and that's just what I overheard.  I don't want to be that person.

I don't want to be the person I had to be last week.  ERs tend to be awful when bipolar; I've had more venom and prejudice aimed at me in ERs than about anywhere else and I've only been to an ER a few times.  This was pleasantly different.  Because of hallucinating I was immediately triaged and immediately placed in a room that is clearly for psych patients it was a safe room.  Odd feeling but much quieter than the rest of the ER so I didn't care.  I saw the best psych resident I ever have encountered, someone who had talked to Dr. Brain, read the extensive set of emails, records, etc. she'd sent him, and knew about me when he walked in. He was straightforward, kind, and knowledgeable.  He told me if my labs were bad I'd go to medical and if not I'd be transported to the psych hospital for a while.  He clearly, like Dr. Brain, anticipated bad labs.  The ER resident was also kind and then his supervisor came in and went through a full lithium toxicity exam so the resident could see what was missed.  He also apparently was supposed to come up with what he missed doing as suddenly he said loudly "FLUIDS!" and ran out.  I was in a bed upstiars about 6 hours after arrival.

The next 2 days were horrible.  I spent them drinking gallons of fluid, peeing, and asking over and over for my basic meds.  The above mentioned psychiatrist refused to listen to my "if I don't have my antipsychotic I can't really tell you how I feel because my mood is too mixed up with exhaustion" and instead told me missing a night of sleep never hurt anyone.  Except for someone who is bipolar and has missed 2 nights and not slept a ton otherwise in days.  He was sarcastic, telling me my level wasn't THAT high.  Well, it wasn't THAT high if it was the typical 12 hour level but a 24 hour level should be way, way lower.  My level also is maintained at the usual bottom cut-off and so that is much, much higher than if I had a more typical level.  (For reference sake we keep my level at or below half what it was kept at before toxicty #1).  

Most of my meds were either given incorrectly or not at all.  I was not ordered any anxiety meds or even tylenol.  I spent every time I saw a nurse asking "where is this med?  why is nobody giving me meds?  why am I not being treated for my baseline condition?"  The treatment for toxicity is fluids.  Normal saline is not about to treat anxiety, cycling, sleep issues or hallucinations (well, sort of; less lithium and that stopped).  But messing with antipsychotics in someone who is hallucinating is simply stupid.

I fought right up until 2 AM last Saturday night.  No, I was still fighting with morning meds at 9 AM.  I doubt anyone has ever been discharged as fast.  I was inches from pulling my own IV to speed it up.  They barely even gave me directions to leave the building.  I told them at 2 AM that Saturday night that I would leave AMA (against medical advice) if I hadn't just taken Seroquel.

I kept being told I should be in the psych unit.  Except that I wasn't have psych issues (or wouldn't have been had my meds been given properly) and therefore wasn't even a candidate for a psych floor.  Plus I don't think psych floors really like IV poles and people attached to them.  Too many safety hazards.  They didn't have a clue how to manage my condition and therefore I suffered fairly extensively.  The doctor even admitted to not knowing enough about psych meds, yet he never called in the psych resident, presumably because of ego issues.  I had a panic attack and after the dr. was paged 4 times he let me have 1/2 of a dose I take to calm  when I'm anxious, which is nothing compared to panic attack needs.  I cried.  I yelled.  At the doctor.  I'm writing a complaint.  Because so much of what happened was wrong.  Had they felt uncomfortable with insulin and withheld it they would have been in huge trouble.  They don't say all diabetes must be treated on endocrinology even if they have a broken hip.  Cleveland Clinic is highly ranked as a psych hospital and they have nurses and doctors who have no clue about psych issues, nor were they all that anxious to learn.

The end result of that hospitalization besides turning me into a wreck is that I am less comfortable with myself.  I feel like something is WRONG with ME that caused this all to happen.  I know that's not true. I know my complaint is a serious one. But the end result is I left feeling like I don't deserve equal treatment and now that equal treatment is not fixing things I also feel like treating me is pointless.  Again, I know that all this isn't true.  I just am struggling with having what I've been fighting for hte last 4 months, the idea that I don't get an equal chance because I'll keep getting sick anyway, confirmed.  And the only reason I felt like that up until this stay was that it was what my own mind was telling me.

And that, long story aside, is why I'm having trouble feeling there is hope.  I spent 3 days being told I wasn't worth having hope, wasn't worth treating with even maintenance medication. I'm vulnerable, I don't feel well, I'm not eating enough and the result of that combination is that I feel worthless and that medical resources are wasted on me.  I truly felt like that by the time I realized they didn't even properly complete putting medication in my IV so it didn't clot.  She forgot. I spent hours with an uncomfortable, useless IV because I had to have it in case of emergency, but it wouldn't have worked because it was clotted.

To make this even worse I got my level drawn today by someone who acted something like I drug her out of bed for this blood draw.  She never even told me she was going to stick me; I watch so I knew, but if I didn't I would have been mad.  She also didn't get much blood and rather than do any of a number of things to get more she mumbled it would have to do.  It better be enough.  That was my last not punctured, visible vein.

This is so long.  I'm sorry.  This is what I've been holding inside all week trying to get out in an organized manner.  That didn't happen, but it's out now.  Thank you if you managed to read all this without taking a vacation day (and more so if you did!).


I got sleepy, on my own about 11 pm. I waited a while and then tried to sleep without the additional anxiety meds I've been needing.  The end result of that was an hour later I just put the additional meds into the pill box; they are now routine until something changes.

I know I've been saying this for months but breain chemisty so, so messed up........I'm scared it can't be fixed.  I try to be positive, which I realize is hard to believe reading here, but this is the kind of thing that tells me bad issues still exist.

I don't think I've said this here before, at least not point blank, but I'm not just scared of losing my job.  I am scared I'm never going to get back to work.  Dr. Mind made me talk about this a little.  But there have been 2 periods in my life:  the one where things were managed (the last few years) and the years I fought tooth and nail to do anything.I'm back to the fighting years with the distinct change in the fact that there aren't really more meds ahead, I have rapidly changed what was working drastically and nobody knows why, I am older and more tired, and after knowing I had a chance to live pretty normally for a long time losing it hurts even more than thinking it wouldn't ever happen did.

I wish I had never had the surgery.  I didn't have a choice, blood loss and pain were ruining my life, but something happened during that surgery that was very, very bad.  I am afraid I made a decision to go into surgery with all those extra precautions and we never considered the thing that went wrong, whatever that was.

I really, really need to see Dr. Brain.  Monday is a long time off.

Friday, November 25, 2011

The Good part of being bipolar

Wait 2 minutes and you will not feel the same....

Tonight I am suddenly quite mixed.  I'm exhausted but need to do things.  I spent a nice long chunk of time folding and putting away clothes and am doing laundry obsessively.  I seem to turn to laundry when I need stuff to stay busy for some reason.  The sad thing was sorting clothes and leaving out the ones I know I'd want for a hospital stay.  I don't think that will be forced upon me, but I do think it has enough potential to try to keep those clothes out of the laundry rotation if I can.  Like I said, w hat I really want is to try this week to get my lithium levels to the target and see what that does and if I'm not significantly improved when I see Dr. Brain again Saturday then I think we need to try something more drastic which with her off means I'd probably need to be inpatient, which wouldn't happen until Sunday or Monday.Who knows how she'll feel about this and I don't even know that she can set up a contingent admission, but I'm going to try to argue for this unless she has a magic pill hiding somewhere and I think that would have some up in the last few months.

At least this helps me stay awake.  I have to go get labs done 12 hours after I take lithium.  I want to make that later so that I can sleep later.  Not that I've been asleep without a lot of extra meds in a long time, but it may happen someday and I don't want to miss this lab.  I'm under firm instructions to not miss it in fact.

And the laundry just stopped.  So I'm going to get my allergy mattress cover (versus my waterproof one that resides underneath because I have memory foam which doesn't like water and I'm a klutz) dried so i can make my bed and enjoy clean sheets.

A change of topic: Mirena review at 3 months

I am boring even me, so thought we'd have at least one post about something a little different.  This may be a girls' only post unless you are a man really interested in what we used to call in college "pink stuff".  Now that feminine hygiene products come in about every color but pink that makes less sense but back then it worked well.

As you know if you've been around a while, back in August I had gynecological surgery.  There were various reasons and so a number of procedures were performed.  One of them was the placement of a Mirena IUD.  This was done because my very messed up menstrual cycle needed correction and I can't take birth control pills, both because of my age makes me a lesser candidate and because they make me crazy.  I was on them the first year I knew I had bipolar because PMS time was a bit scary, and they made me sick and they made me cycle.  There were other reasons that this was the best option for me that I don't need to share.  I will state clearly since I've had someone ask me, while the mirena is not like a typical IUD in that it releases low dose hormones, this results in the lack of a formation of a uterine lining, so it is possible to conceive a child and then have that embryo not have a place to implant.  This goes way into the politics of abortion and we're not going there because for me it's not a consideration with 0% chance of my conceiving anything.  Even if I were sexually active there would not be accidental or unassisted pregnancy.  So that's just off the table, but I know I trolled the internet intensely reading everything before the Mirena was placed, so I wanted to throw that out.

Thus far the Mirena is doing its job.  I was told I would be likely to have 6 months more of the very heavy bleeding that led to the surgery.  I have been fortunate to avoid that.  After surgery I bled for a little over a month.  This is not because of the Mirena but because of my other procedures.  I had a very weird experience of about 9 days after surgery my cramps increased as did the bleeding slightly.  I had to call the nurse line to ask if this was possibly my period.  I felt so stupid given my 20odd years of experience with cramps and menstruation but cramps seemed odd.  Turned out some people are unlucky with the D&C/mirena combination and their cycle restarts quickly.  I was one of them.  I had another period soon after the bleeding stopped that consisted of a day of spotting.  Since then I had one period that kind of freaked me out because it wasn't as gory as before but it was not shorter.  I've also had one cycle that was much lighter and shorter than before.  This is the way the thing should work, hopefully resulting in nothing in a few more months.

The one thing I didn't know about that I wish I had known was no matter what the cycle happens to include in terms of need to use pink things I would still have hormone changes and will still have PMS, even if there isn't MS.  It's not bad, but it is there and can be confusing.  The other thing is that the bleeding doesn't completely correspond to the hormone symptoms.

On the other hand, based on my response thus far my doctor thinks I may be totally without bleeding by the end of a year.  The other thing is that the Mirena is currently approved for 5 years, but other countries use it more like 7.  The plan now, because getting a new one into me would be a major production, is to leave mine in at least 7 years and hopefully that will get me to menopause.  They haven't said precisely what happens then but I believe at that point I'll be a candidate for a hysterectomy because what was learned in surgery was that my lack of ovulation leads to nastiness and the Mirena is preventing the build-up of nastiness. They told me if it weren't for the Mirena I'd be getting frequent D&Cs or having the same issues I was having before.

So I am pleased thus far and they tell me if I like it now that I'll continue to do so.  In the ER last week the psychiatric resident was a bit concerned that I was having a reaction to the hormones but that was easily disproven by my lithium level.  I haven't written too much about last week (it's coming) but the decision had been made if they found toxicity or other neurological/biochemical issues I'd go to medical and if I was just hallucinating I'd go to the psych unit for observation.  Seemed fair enough.  If I'd gone to psych I would have had a lot of assessment regarding the use of the Mirena.  So for the bipolar woman it is not ideal but it beats constant anemia that was just close to needing treatment and able to make me feel lousy but not treatable, and it beats the horror films that I was dealing with for 50% of each month.

When hormones are needed and other options are not choices this is a good thing.


I feel like I've used that title too much lately but creativity is not coming to me (I honestly think that with over 600 posts it would be amazing to not repeat at times.)

Today I had to decide not to go see my niece.  I want to so much, and she was at my mom's, but I don't have the energy for the trip, nor do I have the energy to play with a somewhat grouchy teething little girl.  She's so good when she hurts, she tries to be sweet, but you can tell her hurts and she is more needy.

I can hear the depression when I talk.  My speech is slowing and I seem to not be making sense to other people easily.I absolutely do not want to do anything but sleep. I was wide awake around 10 AM today and was napping by 1.

I am so glad that I'm seeing Dr. Brain Monday and that after that I'll know what is happening.  A huge part of how I feel is frustration that I won't be going to work next week and probably not for several more after that. We'll also know then how my levels are doing as they are done tomorrow.  Meaning I have to leave the house.
That's both good and bad; I am sure it will wear me out but it also is a change of scenery.  I have never liked the color of my bedroom.  When I bought my house I picked out a lot of watercolory colors.  My mom was the one who painted while I packed my apartment and she got the paint.  For a reason I no longer remember who picked different shades than I'd selected making my pale peach bedroom my PEACH!!! bedroom, almost a light orange.  I have always hated it and have had paint to redo it of a year but I can't be around paint fumes and haven't had anyone to help or money to pay much and the last "I work for cheap" person I hired tried to steal from me.  However, after so much time feeling crappy I've about had it.  All I asked for as Chrstmas gifts is help with finishing some projects.  If I could get help with some basement things so I'm ready to put down flooring when I get my tax $, my bedroom painted a color I like more and the sewing room painted I'd be so, so happy.  There's tons more after that; the bathroom needs repainted because despite a lot of coats the old color shows through; the hallway ceiling needs painted because cheap guy (who I was paying quite fairly, he just wasn't a pro) did a crappy job there and painted my ceiling brown in places.  Actually all ceilings need redone.  As does the rest of the house.  For much of it I already have paint.    But I shouldn't think of these things as at this rate they will never happen.

I can't believe how tired I am...You'd think you'd learn to expect it and always it shocks me.

Thursday, November 24, 2011

Two posts in 5 minutes

Just curious, has anyone been on zonegran?  That appears to be one of the few meds I've not tried and I'm interested in anything positive or negative.  I suspect it is more risky than I'll be allow to try right now, but the truth is nothing is a great option and from what I'm reading I like this one the most.



This has not been my favorite Thanksgiving and I don't feel particularly thankful for much right now given my very bad mood.  But i am thankful for each of you, for those who provide support in different ways each day and for those of you who read what I write and say nothing.  Knowing that people do read and therefore this has some place in the world makes it worth it even when people attack me days after surgery or when it feels like nobody in the whole world understands.  Because if you are reading I suspect you get it.  Maybe not all of it, but enough.  Not many people get me so that makes you very special.  Each and every one of you.

I will consider other things I'm thankful for when I am not feeling extremely nauseous yet again meaning I need to force a bunch of water down my throat.

What happens next?

In a small way I know this.  Saturday I get my lithium level drawn.  Monday I see both Drs. Brain and Mind.  Sometime next week I need to see Dr. Body.  Dr. Brain will keep making little adjustments to psych meds for the next few months.  Dr. Body will make sure my body is recovering from being pickled in lithium.  And I will wait to feel better.

The problem (actually several problems) in this scenario is that Dr. Brain is going to be off work for some period of time, and I can't remember what that is.  I do know that next Saturday will be her last day of work for a while.  Since I just took my first shower since Sunday today, one of the best ways for me to show depression, I don't think this is a good time for a break in treatment. I also think I need things to move as fast as possible, with the exception of lithium only because it has to be slow.

I sent her an email today (marked that she shouldn't read it til tomorrow, I just didn't want to chicken out) that said I think we need to discuss whether I should go back inpatient to get a fast start on an additional mood stabilizer.  I may not need it long, but right now I need it desperately and it would help until the lithium is in place if not longer.  I know when she is telling me she thinks I "possibly" will be ok on my old cocktail that this means "there's a small chance" because she tries to be very positive.  She even is admitting to this.  And positive is great, but when she's going to be off work after one week fast is even better.  I don't trust other doctors.  I know if she set me up with someone that it would be who she trusted most with me.  But nobody is her.  I do trust the hospital doctor.  He's been kind and listened to me and treated me well both times he has been my doctor.

As I thought there are so many new meds, yet I've still been on most of them and if not then I can't have them because they are relatives of things I'm allergic to (Invega).  This means being inpatient may be an even better thing as I may be able to try some riskier meds more safely.

I hope and pray that Dr. Brain already has a plan as she often does that means this is all not necessary.  But I know too that I need to be better and that while I don't want to risk messing up my lithium level I also very much don't want to feel any worse than I do now.  It is usual to crash after being extremely manic.  This is that crash.  Normally not such a big deal but this is the 2nd time of the heavy crash in 2 months.  As everyone keeps pointing out to me (Including myself), my brain chemistry is beyond screwed up after everything I've been through.  I need so badly for it to stabilize as this is too long at too unstable.  I think this is past the point where restoring my lithium to normal levels is going to help.

I pray I'm wrong.  About every bit of this.

Wednesday, November 23, 2011

How am I?

Not that good.  I do understand from Dr. Brain that my body has to re-adjust to a lot.  I was pretty blunt with her last night and when she answered today she said she thinks that things still will be ok, I just have to be patient and not give up.  However, she also said she thinks it is "possible" for these meds to work again.  That means translated out of her optomism that she doesn't let me see go away until she is sure, that she really doesn't know.  I may not be better in just a few weeks like I hoped.  A lot of things may happen that are pretty ugly and all we can do is hope otherwise.

Right now, and bear in mind that not only is my lithium screwed up and this messes up a lot of things in the body and will take a while to sort out, my Seroquel is still messed up.  My kidneys have just been through a lot and while my labs show that they managed beautifully, there are also labs showing that my kidneys had to fight (my creatine is low meaning hard working kidneys (thank God as lithium toxicity can cause you need dialysis) and my CO2 is either high or low, whichever isn't desirable, showing my kidneys were struggling to get rid of everything.  That may make me feel bad too.  Restarting lithium is always hard for me as it tends to make me sick.  While it's been on a third of my normal dose this amount won't be enough to fix things and sometime when I'm a bit adjusted I need to increase.  My thyroid was already damaged my toxicity #1.  It will be several weeks before we know how it withstood toxicity #2.

I also am emotionally not handling my hospital stay well.  Lack of sleep and needing to constantly fight while being aware that people were avoiding me (seriously someone is supposed to check each hour per the signs in the rooms.  If I didn't ring for more water or for my urine collection thing to be emptied I could go hours without seeing anyone, esp. if I didn't either walk over or talk to anyone who came to care for my roommate.  I    felt more stigma and prejudice there than I have in a long time.  So much happened as people (some, not all) tried to avoid me. The nurse who pulled my IV never put in anything to keep it from clotting.  This left a couple scabs and a lump in the vein; I knew it was bugging me but not why until it was pulled without bleeding, then I could see where the cathether eventually worked its way out and poked me.  I can't even explain how I felt in there (besides furious) and the effect on my mood is very, very negative.  My self-confidence hit rock bottom last weekend.

I went back and started reading journal entries from toxicity #1.  I need to read the blog entries too although I was only starting to write about personal stuff then.  (hard to believe, I know).  I felt a lot of things then and I keep reminding myself that I did and I didn't have the horrible hospital stay the last time.  It's just that if you are really good about meds as I am and very protective of lithium as I also am because typically I wouldn't be allowed to be on it because of diabetes insisidus but a way was found to make that work, you don't expect any of this.

I also feel dumb because I didn't question not feeling quite right for a couple weeks, off and on but in ways that were subtle warnings.  I thought I knew toxicity and this was not it.  So I'm now fighting with myself because I now didn't aknowledge those lithium signs even when I know it's better to say "hmm, this is weird can I get checked" and I didn't forcefully promote the akasthesia, effectively making myself sicker twice in a few months.

And I'm very worried about my job.  It sound like I may be off a while longer.  I have no idea why my company would want to keep me.

So I'm struggling.  I slept a ton today.

I keep trying to remember that my old cat hasn't been able to get into my bed for months because of arthritis.  I started her on glucosamine per my vet and the last few days she is consistently jumping down and jumping up (rather than climbing or wiating for me to help) sometimes.  She's in the crook of my arm right now and I didn't put her on the bed.  Since she's always cuddled with me and I missed it this is wonderful to experience and I'm focusing on it as a happy thing.  If she can get better I can too.  I hope.

Tuesday, November 22, 2011

Feeling sorry for myself

I've reached a slight breaking point.  I'm so tired of not feeling well.  I can't find food that doesn't make me feel more sick, yet being hungry makes things worse too.  I'm drinking as much as I can but not enough.  I'm so tired and my head hurts, which is just another part of this.  I'm tired of Thanksgiving being crappy.  2 years ago I was not eating most food because of nausea starting Emsam.  Last year I couldn't be near my niece because of whooping cough.  I spent the day with a fever of 100 plus and was miserable.  This year I'm going to be sleeping, being bored, and dealing with all the effects of what my body has been through.  Those remain unpredictable but seem to include nausea/stomach cramps, muscle aches, headaches, extreme fatigue, mood swings, some dizziness, a little clumsiness (nearly walked into a wall at Dr. Mind's office), and did I mention fatigue?  I am better with most of these than I was except the ones that started since I got toxic.  Oh, and anxiety.  That is beyond out of control, I'm sure because of missing meds in the hospital, but I keep taking meds every few hours (different kinds) and they aren't helping.

I need to quit facebook right now.  I keep seeing friends and family and all these neat things and "oh my kids are so cute" and I want so badly to tell about what my life is really like right now. I remember being in the "safe room" in the  ER and wishing I had a smartphone so I could shock everyone (Jen's Status: Did you know if you are hallucinating when you go to the ER you jump over everyone else for triage then are triaged immediately back to a special safe room for potentially psychotic patients?  Well, I do!  Right now they keep peeping past the curtain to check on me.  They think I don't notice.  This room has nothing so I can't hurt myself.  What a learning experience!") "Well, IVs are running rapidly to flush the lithium out of my body.  I keep getting to pee in a bathroom with no door lock!")  "oh good, I have a bed"."hmmm, no meds for another hour.  1 AM is a great time to take my 9 pm meds!"  "What do you do when they won't give you an antipsychotic and you're hallucinating?"  "My roommate is talking about preparing 60 lbs of chicken for Thanksgiving!" (she later changed to chitlains when she was less drugged.  she had dementia but she was interesting.  Dr. Brain called me and in the midst she was screaming about something.  Dr. Brain asked what THAT was; I said "my roommate".  Later she wished me good night and said she hoped my roommate would be calm.  My roommate wanted a turkey and cheese sandwich and morphine every few minutes until I fell too soundly asleep to hear anymore.  Granted my yelling on the phone didn't help her calm down but sheesh.)  "Guess what?  I peed 74 oz in the last hour!  That's why I need my meds, stupid people!"

I'm feeling bitter and angry and afraid right now.  I feel like I used to, that this disease is out to ruin my life and that I'm never going to be able to do the things I love (like work) again.  Every time I think I'm improving something else happens.  I'm so tired of it.  Yet nothing stops it.  At this point my brain chemistry is so incredibly screwed up I have no idea how we'll ever get it back to working again.  It's no wonder I didn't notice the symptoms of toxicty before they got so bad I was hallcinating; I have so much constant shifting in how I feel and can eaisly blame anything physical on the meds attacking me that I noticed nothing.

I have to take my pills.  I was hoping to get rid of some nausea first but it isn't to be.  So, here we'll all fire to fire.

I'm sorry this is so bitter.  I've more than had it.  And things get even better as Dr. Brain is off work for some time that I'm not clear on after next week.  I can't imagine any of these last months without her.

I hate this, I hate me, I hate the doctors who made me feel like this.  I hate that my brain is so dependent on meds to function and that missing meds leads to me hating myself.  I'm tired of being scared.

I want to be better.


Hmm, what to say?  First, Michal thanks for the psalm.  That's one of my favorites.  Back in college I volunteered at a state facility for those with developmental disabilities and did a little group that we called Bible study but per their request was Jen reads the Bible.  We always read something else, talked a few minutes and then read a few psalms as they loved them as I do.  Somehow that was drilled into me, probably by my grandmother, that each day you read the Bible you follow with a psalm.  This made me love many of them.

I saw Dr. Mind today.  During the explanation of what was happening I realized I was schlurring my sssssssspeeeesssshhhhhh.  So I let Dr. Brain know and combined with nausea I'm backing off a bit and will go up on lithium more slowly than hoped.  Depending how my stomach behaves in the next hour and a half will determine whether I skip a day or just reduce it tonight.

Dr. Mind told me no Thanksgiving.  I am too nauseous to really think of it and the overally experience is too much. He told me to let my family be as angry at him as they wanted, but NO.  So far this hasn't caused anything too major.  And he's right, the more I rest the more likely I am to get to go to work next week.

I am working on a letter to the ombudsman about my experience.  I think that is how I will share the experience with you because trying to write it twice is proving impossible.

Otherwise, I don't think I've done anything today.  I hoped to get home from Dr. Mind and sleep but it was the wrong time of day.  After a point in the afternoon I just can't sleep; I think my body knows it will mess up bedtime.
I have to figure out what I can eat.  I'm vaguely hungry and haven't had much.  Protein is all that sounds good but not grease.  I think I'm going to try some fish.  I'm a bit afraid of throwing up fish (blagh) but it sounds ok.  I had really good fish in the hospital, weird as that sounds.  The food truly was pretty good.  there, one positive thing.  The weird thing is that last week I was craving tuna like crazy.  One thing I remember clearly from toxicity #1 was that I ate tons of tuna and it was one of the only things that tasted ok.

Please keep praying for my cousin's son.  He had open heart surgery about a week ago and has had multiple complications and remains in the ICU past when he should have gone home.  He had a genetic disorder and they keep finding more pieces to his severity and corresponding issues.  Literally daily he's had some new issue-seizures, a possible brain bleed, possible brain damage from surgery, swallowing difficulties, a need for a special formula because of a lymph issue, and abnormalities of the brain structure were detected.  That's a lot for a little guy not 4 months old yet.

Anyway, off to find that elusive food.  I may stick with last night's supper and eat buttered noodles.  That worked ok.

Even finding food makes me tired......

Monday, November 21, 2011

I don't know

I got an email from Dr. Brain.  I restarted lithium and am feeling very nauseous which is either my body saying no or psychosomatic.  We'll see which.  I am scared of lithium vomiting.  The last time I had toxicity I had severe vomiting, so much that I finally just gave up and laid on the bathroom floor.  I couldn't even get upright to throw up, then threw up so hard I peed myself and laid in that for a very long time until there was nothing left to vomit.  It was terrifying.  I do have Zofran and while if I start vomiting I need to do so some to get the stuff out I at least can prevent the horrors of the last time.  But simultaneously if I can't handle this and this is only dose one then that's not a good sign for the future.  Usually one good toxicity is enough to make them think hard of taking you off it.  Diabetes insipidus nearly always means that you are taken off it. It took 3 doctors making a plan to keep me on it when the DI was diagnosed in 2007.  So going back on it again is necessary to try but may or may not work.  Only time will tell.  But I soooooooooooo don't want to puke.  I was on a floor where there was a lot of puking (none near me or I'd think I caught something) and I have heard enough of it lately.

I'm going to see her next week before I am supposed to go back to work.  No good way to know how I'll feel then. I MUST have labs Saturday morning.  That will tell a lot.

Ugh, I'm going to try for some ginger ale.

NO PUKING.  Please, no puking.


I'm beginning to think that Dr. Brain heard about my yelling at a doctor Saturday night and is afraid of me.  As I recall from Saturday evening when we spoke she was going to be out of town Sunday but would call the hospital in the afternoon to see if I was still there.  If not she would call me at home.  I was to email her as soon as I got home.  I did. No answer, no call. Part of why this is all weird is that she was holding a space for me if needed and well, I guess I didn't need it, although I don't think she knows all that happened Saturday during the night (I realize neither do you but it included my yelling at a doctor on the phone).  I kind of thought I did need it since I'm cycling rapidly and the anxiety is now unbearable after not being given any mood stabilizers until 1 AM Sunday morning and the anxiety meds I needed to sleep at more like 2.  And I'm supposed to be back to work next week and some things have to improve vastly before that can happen.

All day I was sure she'd call.  As 8 pm approaches rapidly I am pretty sure she won't.  And no email means she probably didn't read what I sent.  I can't really complain as she spent tons of time on me this weekend including 2 phone calls to the hospital and extensively preparing the resident who assessed me in the ER.

I know not calling means she has a good reason. But she is killing me.  I am not even able to restart lithium as I should have yesterday because the hospital people were so glad to get rid of me that they neglected to tell me how they wanted it restarted and I am not approaching that on my own or without knowing labs for monitoring are arranged.

So I keep taking anxiety meds that don't help and trying to figure out what I can do that requries no energy, doesn't agitate me more, and makes me feel like this is going to be ok.  Right now it's hard to believe it will be anything but another disaster.

What else can I do to my arms?

One symptom of lithium toxicity is clumsiness.  I hadn't noticed it all that much but looking back, yes, it was there.  Enough in fact that at first I wasn't allowed to go to the bathroom without supervision.  That was fun.  Anyway, I presumably was dehydrated, which would be expected, because I usually am an easy stick and this time was a hard one every time.  My IV site is angry looking and I think this is because first it didn't go in incredibly easily and then I had trouble keeping tape stuck to keep it in until finally I had them wrap it all the way around my arm.  They clamped it when I finished my fluids and that dug in and left a mark.  When the nurse stopped the fluids she didn't put anything in the IV to keep it from clotting.  I was very uncomfortable with the IV by that evening and judging from the extra hole in my arm it appears that after it clotted it worked its way out.  So a good-sized portion of my right arm is messed up by that.  My left arm bears the marks of many blood draws.  The first person I swear had never done a solo draw.  I had to remind him that my making a fist might help, showed him the usually used vein and then he did something I hope nobody ever does again--rather than just jabbing me he scraped the needle along my skin, scratching me before going in and digging around.  Huge bruise there.  Then another blood draw was done in the same area with more digging and more bruising.  The funny thing is that the person who went in blind (and who remembered me from my previous stay) left no mark but a pinprick.

I just made things even better by closing my bi-fold closet door on my elbow, resulting in a bruise and the skin opened up as well.  Lovely.

Haven't heard from either doctor yet (Dr. Body probably needs to check some things but I don't feel like going to see him if I don't have to and he may want to wait a few days to see what has happened off the IV for a while.)  Dr. Brain I'm nearly certain will call me.  I know why I'm so very anxious about all this but this doesn't make it fun or easy.  If only my mood stabilizes but now that it is out of whack and I can't have much lithium for a while, probably a good long while, this is going to take time.  I have a funny feeling I'm going to be off work even longer. Yippee.


Today I am doing what I can, which turns out to be sleeping and worrying about Dr. Brain getting in touch with me.  I know she will and that it probably will be tonight, but I just feel like my meds are so screwed up that I must do something now.  Which really I am, sleeping, but the whole experience has me terrified.  It was so out of the blue and so scary, and the hospital time damaged the small faith I'd started to regain in doctors who I haven't thoroughly assessed for competency.  A sarcastic, dismissive psychiatrist is a bad thing.  A general doctor who admits to incompetency with psych meds so won't give normal doses is just wrong.  Oh, the stories I have to tell you all, but only when I can make sense.  Which is not yet.  The confusion I had before is mostly gone but worsens when I'm tired.  I'm tired.  I also had to call and explain my credit card payment wasn't made because I was in the hospital to get the fees and interest increase removed.  Thank God.  And I'm trying to get human resources the information they need by Monday or I lose my job regarding returning.  So it's an altering stressed and sleepy. And right now I'm falling asleep yet again, writing or not so I guess it's nap time.

Sunday, November 20, 2011


This has been an interesting few days.  I'm exhausted and will share details sometime soon, but thankfully Dr. Brain's instincts were right again.  My hallucinations were neurological because I had significant lithium toxicity.  I was admitted to the medical hospital, had a really tough time getting meds that I REALLY needed, and spent most of the time asking for meds that were not being given properly (like Seroquel)/arguing that meds are important/etc.  It was bad.  I'm now cycling all over the place, a little from the lithium leaving my body, mostly from not getting Seroquel or sleep.  My anxiety levels are beyond belief.

But I'm having only rare auditory "hallucinations" (they are but they aren't), I'm drinking everything that will pour into my mouth and peeing like crazy (70 oz in one hour this morning), and Dr. Brain is way on top of this.  I think she's to call me tonight although I'm hazy on that and many other details.

Friday, November 18, 2011


Dr. Brain wants a neuro check done.  She said to go where I'm comfortable.  That is not a local hospital.  I'm going to the ER where I go for psych.  I'm also going ready to stay because if I do that I won't have to :) plus my mom won't be trying to pick things for me.

I am scared.

Will post more when I can.  Won't even get to the ER until nearly 5 probably so may be very late.

Thursday, November 17, 2011

Worst fears

Pretty much from diagnosis (remember I was diagnosed by this dr. who is one of if not the top expert on bipolar in the world so this is not a high-handed doctor; in fact he was conservative and I was bipolar II for several months) I was told that (based on the research done at the center where my clinical trial was done) I had most of the things that made bipolar hardest to treat.  I had been way overtreated with severely high doses of way too many antidepressants which is not good for the brain, and I had rapid cycling to an extreme which is partly/largely b/c of the antidepressants.  I can't remember the other factors, but I was told that based on what was available in 2002 I would gain control with careful med management but I should not expect to be symptom free.  Essentially there were only 2 bad things I didn't have diagnosed at that time:  mixed episodes and psychosis.  Within months mixed episodes were clear and my diagnosis changed to bipolar I.  Mixed episodes are kind of a unique psychosis although I have seen that they may be just considered psychosis soon. And boy did I have mixed episodes.  Still do.  I have only very rarely been diagnosed with an episde that was one-sided.  And as I wrote a few days ago eventually meds that help me came along and while I still am mixed a good bit it is not bad and managed.  But despite all that my psychotic symptoms have never been that bad and have been controlled for years.  I had visual hallucinations from a medication 5 years ago and a lot of paranoia until I don't know when.  But the psychotic stuff was never severe enough to even treat.

Obviously that's not been so true lately but 2 days ago I felt so sure that today I would get to tell Dr. Mind that I'd achieved a normal mood.  I was doing so well, so sure work awaited me in 2 weeks, and as I wrote last night I was ready to start dissecting the OCD part of my anxiety.

Unfortunately today rocked all that to the core.  A few hours ago I wrote on here "This morning (and this is hard to describe) I was actually feeling like all the noises from yesterday, noises I never noticed, were loudly banging around in my brain".  Those noises became different and I became scared and immediately went into denial that maybe I was hallucinating.  So I kept insisting it was sensory overload.   Dr. Mind was worried when he got to the waiting room and I had my eyes blocked from some kid playing with a flashlight and couldn't hear him because of earplugs.  I was shaking by the time we got upstairs and I think not making a lot of sense. He thought I was very manic, something I had thought from time to time but I don't get manic in 1 day.  Ever.  Not this manic.  But I have. He actually left me alone to calm down for a few minutes. I think he knew how bad it was looking at me, shaking and agitated and scared and jumping at every noise. I told him about the voices saying I know what it sounds like but it can't be can it?  It took a lot of work to describe it. /First I stuck to the overwhelmed yet-this-makes-no-sense approach.  Then I cautiously approached my fear of what they really were. Should you ever find yourslef needing those words "I feel like my head is stuck in a bucket" did nicely. By the end of the session my fear all day was confirmed:  I should not, hyperacuity or not, be hearing voices.  It's hard to describe.  Mostly it's like overhearing a roomful of people talking; I hear a few words or a word or most of a sentence.  Most isn't directed to me.  I hear the voice of a small boy and there are sentences.  Thankfully my voices are not threatening me at this point and are only annoying because it's loud inside my head.  I am now having some visual ones too; they are less fun as they seem to often be the shape of birds and I'm afraid of birds.  These are not scaring me yet, I have enough connect with reality to figure it out eventually.  It was a very long session, both timewise (the longest I have ever had with him) and in intensity.  It was so hard because focusing is so hard (I'm writing this one sentence at a time) and I'd start to explain something and wind up 20 miles from where I started.  I mentioned having done an anxiety test for my sleep study and scoring 2 points below panic.  He made me take it again and while it was hard because I couldn't remember the 4 words I was to use it was clearly bad by the first page.  I know am in extreme anxiety, panic and 8 points higher than 10 days ago.  We had to practice for me to remember that.  I did survive orientation questions with pauses to think, although I spent a chunk of today thinking it was Friday.

I have sent an email to Dr. Brain and presume he has too by now.  Hope so; mine makes little sense.  I'm completely in shock.  I was getting better and now I am reversing that quickly.

We ended with prayer.  Well, he prayed, I sobbed.  Unless we are using certain techniques the only time we pray is when it is bad.Not that my spending a day waiting to see if I just might be fully psychotic like I suspected and then about an hour and half deciding just that is probable.   I could see at the end that this is saddening him and I am scared by that.  He's under so much personal stress that it could be just one more bad thing happening to someone he cares about, but he knows more about what this means for my future.

The only change in meds lately was I reduced my seroquel by 50 mg over several days.  We seem to still be in the antipsychotics are the less the best.  I went back up by my 50 and am fighting the desire to increase and add as much of both kinds of antipsychotics in my current supply just to make it stop.

I don't know what happens next.  For the 2nd day in a row I've left a message at Dr. Brain's office that something was seriously wrong.  Try saying allowed and for real "I'm hallucinating" to an answering machine.  I know the deal is usually home as long as I am safe but I don't know how safe antipsychotic changes which are clearly needed are.

If you are one of my prayer people, please pray for an easy solution and that my body tolerates it.  Pray that I can stabilize and regulate very quickly so that I don't have to explain that I can't work because of being a wee bit psychotic.  Pray that this can be fixed at home.  Because the unit is always very cold I am planning to go tomorrow to buy sweatshirts.  I need them anyway and since I assume this could become a rapidly changing situation unless I hear differently I'm going to be as ready as I can  in case.

This is harder than realizing I had bipolar, than hearing the diagnosis and the severity and the upfront talk about prognosis.  I can't explain it.  And frankly I just want to CONTROL it.  ASAP.  Meds are hard b/c of akasthesia.  I suspect my sunny thoughts of work just got lost.  I have no idea what or how this will be fixed.

More when I can.  It's hard to leave people with bad news and then not come back but right now I am controlling these things.  If I can't or it takes all my energy then I will disappear.  If I am hospitalized and still quality for mood disorders (Dr. Mind promised me always) I'll have computer access.  It's if I'm home and either sleeping off drugs or using all my energy to fight that I'll be quiet. However, there's a lot to say about this so I'm sure I'll be back.  Maybe even later tonight.  I'm scared to turn the lights off.  So we'll see.  I am hopeful of some sleep.

People use hallucinogenic drugs are huts and are welcome to this as I watch bugs on my ceiling that aren't real........


Before I start with my crap, yesterday I listed various people in my life with a lot going on.  Please keep praying, and add in one person who just needs prayer.

If anyone is keeping track, and I hope you aren't, I have now been awake for 30 hours.  I haven't gotten tired although I have calmed down a bit.  I have some medication options from Dr. Brain but since I need to drive and have to get sleepy sometime and don't want it to be while driving.

I did figure out why I couldn't sleep.  Those few hours I was out and busy yesterday were way more sensory input that I've had in a long time.  I've certainly been in them but it's been a few weeks since I handled much of it well.  This morning (and this is hard to describe) I was actually feeling like all the noises from yesterday, noises I never noticed, were loudly banging around in my brain.  Every little noise outside, like wind or a car or whatever had me reaching for headphones but none lasted long enough to need them.  I'm going to stop and buy earplugs today so that I can try to avoid noise that way. I used to carry them around all the time for this reason but haven't needed them for many years.

What scares me the most is I feel fine.I know I didn't sleep until at least 5 am and I don't remember sleeping then but I may have slept/dozed and hour or two.  I remember trying then.

Oh well, tonight the full arsenal will be trialed if needed.  If I knock myself out well, I don't have plans until Tuesday night.  We won't go into my thoughts on the fairness of this, just when I needed to BUILD confidence not knock it down.  On the other hand I know it was 1) sensory overload to an extreme 2)an honest misestimate of my super powers 3)maybe some akasthesia 4)severe, extreme, horrible anxiety.  In fact at 2 I got up and went and organized bills so that I could stop obsessing about them.  Didn't help, but my bills will be paid when I go to the post office.  Today was the day I paid off one large medical bill.  I am also 1 payment away from done with my washer/dryer (completed DURING the promotional rate!) and 2 payments from done with Sears card which is my something broke card.  And I have 7 payments left on my last small student loan so hopefully that is done very soon.  Don't be envious though.  Once Cleveland Clinic figures out that I am NOT paying for thousands of dollars of things they never submitted to insurance I owe them a big chunk of money and I still have to do the carpet removal/new floor in my recently flooded basement.  That means no tax money for the upstairs floors which REALLY need replaced for several reasons.

Anyway, I need to stare at my kitchen to see if anything sounds good.  I probably then have to make a new batch of tuna salad, which does taste good.  And I need to well, I forgot actually, but something.

Why did I title this math?????

Trying not to panic

I did not sleep at all last night.  I tried and I medicated myself beyond all reason and it did not work.  It's just the result of being in so much stimulation but it is still a huge overreaction by my brain and I'm a lot stressed because I feel in some ways like the akasthesia and I think it's normal to have some re-runs when it was that bad but I only vaguely remember the dr's education on that.  Even with akasthesia I got a little sleep.  I am desperately seeking Dr. Brain's help and she'll probably hate me but I am not doing this again.  Tonight I will sleep, I don't really care how, except that I am stuck on dosages so anything I do could be harmful.

I called and hopefully Dr. Mind will have a day opening so I can get this over with.  For now I'm going to get a shower so I'm ready if they call and say they can take me in an hour from start time.  Not so likely but I am not fond of driving up and back in the dark if I don't nap which I am not managing right now.

Not good.....

That could have gone better

My reaction to the overstimulation yesterady was to not sleep.  I took a big dose of anxiety meds because anxiety was the issue.  Didn't work.  I took a sleeping pill over 3 hours ago and am still wide awake.

I hate this.  It makes me more anxious and tired and now how on earth am I supposed to cope?

So upset.

Wednesday, November 16, 2011


(please read prayer request on below post.)

Dr. Mind and I have been going easy of late.  I can't handle much more.  We were doing something very intense stuff during my sobbing period but haven't gone near that again, I assume to avoid getting me focused on painful things before I'm stable.

Tomorrow we're going to talk about something we have but not in enough detail.  That's because I am just now realizing (his favorite term) that I have a bigger issue than I understood.  Dr. Mind has said for years that I have OCD traits.  I am not diagnosed with OCD, but I do have traits of it.  Mostly it is in how I worry or obsess about things that generally are not important.  During these last months the Neurontin triggered a lot of crazy thinking for me.  Mostly it made me anxious to the point of paranoia. Dr. Brain and I tried to reconstruct what it did because it was awful yet putting it as an allergy is not good since it seems likely I could get akasthesia again.  I didn't remember well enough, but the good old blog produced a list that defined it pretty well.  Anyway, with that anxiety I had several things going on, but it was the first time I was aware of actual obsessiveness.  I am fighting this right now still; when I put water into a cup with ice I can use 4 and only 4 ice cubes.  When I stayed at my mom's and had to use her ice which is made by an auto thing and 4 cubes isn't much I STILL had to use 4.  Now I can do 3 or 5, but it bugs me.  A lot.

As I said earlier I am tyring to increase the sensory input in my world a bit to prepare for back to work.  Since I don't have TV that means movies.  Yet I find myself realizing "hmmm".  I have certain movies that are the only ones I watch.  I have certain sitcoms that are the only ones I watch.  I avoid music in general but I do have some music that doesn't bug me.  It's not the music styles, it's music that I know and can anticipate my way through.  I have issues with music I don't know well enough to do that "sticking in my head" but for like 2-3 weeks of repeating one phrase in my head over and over and over.  I don't do things I thought were required for OCD like checking locks, although I guess I really do as I will check paperwork, mine and assistants', repeatedly.  One thing wrong when I'm cosigning stymies me.  I know that while I do not create patterns (although I bet without bipolar I would) patterns that aren't right annoy me.  The pattern on the semi-Oriental style rug in Dr. Mind's office drives me crazy.  It also drives me crazy when the fringer gets caught under his desk chair and isn't in place.  I'm struggling right now because the agency just bought new furniture and rearranged the waiting rooms.  They put a couch where "my chair" used to sit.  I tried the couch but then people touch me.  So, no couch.  The funny thing is that they moved a chair from the other waiting room that used to be "my chair" over there yet I've been forcing myself to sit there.  I guess that 5.5 years of not changing wasn't good.  I did that in college too; I actually would get to all classes early to ensure that I sat on the left hand of the room, first chair in the 2nd row.  I'd forgotten that.  Oh, and the um, 40some hats I made while sick.......that was to stop thinking.

All of this is making sense.  I took one of those "might I have" tests and flunked it almost as severely as i did the anxiety test for my sleep study (aka badly).  This changes nothing.  Except I am anxious (ha) to know how much of Dr. Mind knows already.  I keep telling him after my birthday and the stressful season ends that it is time for anxiety review time.  We may be starting sooner than I thought.

Again, it changes nothing.  I doubt it will be a formal diagnosis, partly because some of the others kind of cover it and because it's not really treatable via meds because of interactions.  But it will maybe make anxiety reduction part ten million to have some different focus.

Something is NOT wrong with me but everyone else is suffering

First and most importantly, please pray for a lot of people for me.  My cousin fell and severely broke her arm a few days ago and had surgery yesterday.  It's an ugly place to fracture that takes a long time and hard work to recover.  Her daughter, who is about 27, has 4 kids.  The youngest is about 3 months old and was born with multiple issues including a missing kidney and 2 both severe heart defects plus a genetic problem that causes many other issues, right now the biggest of which is immunodeficiency.  He had open heart surgery today and had a few snags; he's on dialysis, will be on a vent and in ICU longer than hoped, and just needs lots of prayers.  His parents of course need prayer as well, and his grandmother is probably having a terribly hard time as she can't be with them during this.  The person who got me to start this blog years ago, Dr. Mind the first, who is someone impossible to characterize in my life (mentor, friend, ex-therapist, former professor, the reason I lived to be diagnosed without killing myself, the person who taught me to believe I could still LIVE while helping me through many very difficult times including the year I was undiagnosed and losing it, the person who for years would give feedback on interpersonal issues so that I functioned (literally he used to have to make me call the dr. or psychiatrist because I was scared to do either no matter what was wrong), is dealing with the loss of his mother-in-law who I know was a mother to him.  She also lived with him and he has been doing significant care with the rest of the family for years.  Dr. Brain is having surgery in a few weeks.  And Dr. Mind is facing a tremendously stressful, lifechanging, horrible thing I can't go into as it's too specific. My hair stylist just lost her grandmother.  It's a cold, mean world sometimes and I ache for all of these people.

I got my sleep test results and finally something that seemed likely isn't.  I have only  mild sleep apnea and probably a sort of subclinical thing.  My sleep has many messed up characteristics but we knew that from the start.  Some is caused by antipsychotics (they mess up sleep cycles), some is obvious like it's hard for me to fall asleep and I wake up a lot.  But overall I have only the sleep issues we've been working on since I was 18.

I slept 9 hours last night and woke without an alarm.  I was gone and shoping for quite a while.  I am agitated and anxious; that was so, so overstimulating.  But with luck that is all I'll need to get Christmas done without leaving home and that leaves me needing to do a huge grocery shopping and pet food shopping and I can avoid stores for the next 6 weeks.  Dr. Mind and I already talked about my needing to increase my stimulation because I've been in sensory blackout for so long while recovering.

Tuesday, November 15, 2011

The only time this is good

I am bored.  This is so good.  It means I have finally slept enough to not feel that sleep is all there is in the world.  I still have plenty of that to do but the fact that this week's "entertainment" is solely doctor appointments and a haircut is bothering me seems to make it clear that I have at least the desire to do a little more.  That means both I'm getting less depressed and that I am starting to approach having some energy.  It's been a while since I've done this part but I seem to remember that once we get to bored better is coming soon.  This is even better because this means our timing is good and I will have some recovery time when I feel better.  I pray at least, I think this is it, the thing I have wanted more than anything else for months.  Crazy, tomorrow I fully expect to be told I have sleep apnea, and I'm fighting with very low blood pressure from my increased MAOI dose (88/43 at the hospital last week) so the physical goodness that I've been excited about may be something to fight with soon on some level but I'll deal with that tomorrow.  Frankly if sleep apnea is going to be a big deal I may be asking to stay off a bit longer for yet another all new reason.  But again, that's for tomorrow afternoon.

So for every time you've told your child to do something if bored, I will say boring is good, good stuff here.  I hope to be bored tomorrow although I'm likely to be upset instead.

Monday, November 14, 2011

Makes sense

I ...ah, interrupted as I am DAILY about this time, the hardest time of the day right now when I have to keep myself awake for med time to stay on schedule, by a call from my graduate school.  I know they want money.  They got plenty and I don't like them much.  So I don't answer.  Yet they keep calling and one day I will lose my temper and answer and it will involve me holding my breath trying to say I don't answer (and pointedly hang up on you often) because I don't want to talk to you.  Go away....

Anyway, before that, I had a sudden realization last night. Friday night I was horrified to realize that my increased asthma symptoms were because I had never yanked my steroid maintenance inhaler out of my bag after my sleep test so I went about 5 days without it, which is bad.  Yet I realized something else....steroids tend to agitate me.  I get very little systemically through the inhaler and have not had trouble in the 9 months or so I've been on various steroid inhalers.  (Steroid pills are what I fear).  Yet there was a strange "coincidence" last week.  No steroids the same week that I finally, after multiple treatments over several months, started sleeping deeply and long.  I now think that when in the wrong position I can be sensitive enough to be effected by my inhaler.  It doesn't matter, I have to use it and probably always will, but it's good to know that we may need to consider it as a probablem sometimes.

Today I didn't nap and slept around 12 hours.  We'll see how I feel by Thursday (tomorrow and Wednesday are busy-ish) but the goal is to slowly come down to normal sleep.  Right now I could easily go to sleep except I need a shower and have to wait for the washer to finish using hot water.

I had a call on Friday with a message left to call a specific person at my pulmonologist's office to set up a time to come in for my sleep study results.  I called today.  At first their computer systems were down, but she called near the end of the day to offer me the "first cancellation we have", which is Wednesday.  I suspect this means I'm a sleeping failure as they seemed very interested in getting me as soon as possible and if I did fine this wouldn't matter as no treatment would be involved.  If, though, I stopped breathing every 5 seconds, they'd want to fix that soon.  I hope they can get the Cpap started now so I don't have to deal with that as I'm trying to go back to work.  I really, really hope.  I want to whine about the Cpap thing, but I won't until Wednesday.  Ugh.

I got an email from the girl I was in the hospital with.  She said the one who gave me fake information asked about me.  I think she was telling me that as a way to help the hurt feelings.  Which was nice.  I feel so different about that now though.  Yes, it was not nice.  But why I expected much different from someone I was in the psych hospital with is another story.  It's called the psych hospital for a reason.  I was not at my best and can hardly expect that anyone else was either.  I took too much out of my friends' being kind to me and continuing to include me when I couldn't do normal things to mean I was totally one of them.  And I wasn't.  Partly it was because I was highly agitated and manic until I was drooling, couldn't see and was slurring my speech, partly it was because my disease isn't the same.  The one who gave the fake info asked me why I focus so much on monitoring things.  Good question; they work hard to teach the depressed people not to do what I have to do to function.  I live my life around monitoring and watching for parameters.  3 nights without 5 hours of sleep, notify the dr.  Mood swings that I feel are growing, get to dr. Mind ASAP and probably increase sessions for a bit so he can watch. Etc.  Part of why I got so extremely sick this time is that I did not do the "THIS IS SERIOUS" thing and call Dr. Brain and leave a message.  I don't know why I hate doing that so much, but I will be much more careful from now on.

Anyway, it's about pill time which also means fighting to put clean sheets on (I am truly bad at this, I do it wrong several times every single time) and taking pills and then a shower.  Hopefully the washer is about done sucking up all the hot water.  It's an HE machine and it really doesn't use much hot water, but (I hope this ends with a hair cut tomorrow) I have been having a problem with large amounts of hair falling out and tangling terribly.  The only way I can control it is to put on a ton of conditioner (hint:  Suave has come out with these "professional" conditioners that cost about $2 and work as well as the expensive stuff and when you are putting about 1/4 cup of conditoner on your hair daily that's important) let it soak in for about 5 minutes and then comb out all the dead hair and the knots it is tied in.  If I don't do this my hair is absolutely impossible to comb dry.  But my hair hasn't been cut in so long I'm embarrassed to go in, especially since I've cancelled at least twice during this nightmare and while that's understandable it's hard to explain:  my anesethesia made me crazy and the med to treat that made me crazier are so "the dog ate my homework" of missed stylist appointments".

I sort of hate to do the sheets because it means moving Old Cat.  She sleeps 99% of her life away in a bed purchased for my much larger cat and therefore very large for her on an eletric pet warmer.  It helps her arthritis.  Except the last 2 days the other cat realized he'd like HIS turn in the big heated bed and so he's been kicking her out about now.  She spends the rest of the day hissing if he comes near, but he sneaks in while she eats.

And oh crap.  We have a tornado watch and high winds just started and I need to to find flashlights etc.  Just as I wrote that the power blinked......

Sunday, November 13, 2011

I can't believe I never told this story

This has nothing to do with much of anything except why I do not seek medical treatment locally anymore, ever (my argument has always been that I found Dr. Body locally but he did not stay local very long). I'm mainly posting it because I have little memory of this last few months and I use this blog as my memory.

 This story goes way back to after my surgery; the surgeon called and told me the biopsy reports and that there was one thing of slight concern that needed to be checked out.  I originally saw her about 18 months ago because of blood in my urine and she deals with that as well as gynecology.  At the time a "bladder wash" that got urine only from my bladder was done and was negative, indicating things were fine and my blood in my urine was probably uterine.  But when she did the same procedure during surgery they found atypical cells.  These were most likely nothing but she wanted me to see a urologist as soon as possibe and to have a very definitive type of CT.  I honestly thought big deal, I've had CTs and ultrasounds and they are negative.  Then when I had this CT I was a little surprised because I could tell it was a bigger deal than anything previous.  The subtle hint was that I was given not just a syringe of contrast into my IV but 8 minutes of it, then more, from a syringe like thing that I can only describe as enormous.  The day after that I saw Dr. Pee, the urologist.  I had gathered up a CT report that had been done when I had severe pelvic and flank pain about 3 months after the all-clear from Dr. Sweetheart; the scan was done to see if I had a kidney stone since I had every symptom; it was clear.  Dr. Sweatheart had the previous scans, including one done to rule out appendicitis at my local hospital in 2009.  I was mightly confused and had to go request the 2009 one because the 2010 one did not mention the existance of a cyst on my kidney that has been the cause of most of this testing.  That report mentioned some things I didn't understand and googled, only to read "cancer markers" especially when combined with atypical cells in urine.  It also mentioned follow-up, something that clearly was never communicated to me or the dr. who would do the follow-up.  So I went knowing there was concern.  I was expecting to have to have a kidney biopsy and that I was low risk but that this could be serious.

Well, what it was was a string of errors.  Dr. Body has long thought I've had stones but none has ever been detcted on a scan.  Except that when Dr. Pee compared the "concerning areas" from 2009 to the 2010 scan she discovered that the reason I no longer had the markers was they never existed.  In 2009 I had a kidney stone hanging out benignly but was misread.  In 2010 the stone doesn't show, undoubtedly explaining why I had all the symptoms of a stone and no stone found (I had symptoms for several days before I saw Dr. Body). The 2010 radiologist missed the cyst that is still there but stable and harmless.

Dr. Pee explained that they'd test my urine again and as long as it was clear I was fine; if not I'd have another minor surgery to take multiple samples from my bladder wall and get urine from my kidneys to be sure things were ok.  She also told me she was pretty sure this wouldn't happen.  And she admitted that she and Dr. Sweetheart were actually very concerned when the cancer markers and aptypical cellsll were combined.

So not only have I had all the rest of this stuff I had a period of knowing "hmm, I have signs of cancer but there is no way this will be anything more than testing" to finding out that 2 specialists did not like the existing signs.

I merely sent Dr. Body an email telling him that his intuition beats multiple scans (he was right for years about kidney stones) and that I would no longer be getting care are my local hospital for anything.  Ever.  Not that the city (not Cleveland Clinic) radiologist did a great job either given the missing a large cyst thing, but whatever.  I don't have to have the stupid thing monitored and since we know I've had stones if another were to strike we'd know where to look.


The need to sleep almost all the time continues.  This is being considered a blessing and as I thought is the sleep pattern Dr. Brain has been wanting for several months.  So I'm on continues "sleep" orders and will be remaining home for 2 weeks more than planned, with everyone pretty sure that will take care of things.  I can't believe I'm much I'm sleeping.  It feels so good.  This is sleep that feels like something my body needs much deeper than rest; I think it is healing.  When this happens I always forget how totally my life will wrap around sleep for a while until the sleep really hits and then it is just everything.  I am so incredibly sleepy that pretty much nothing in the world seems worth it besides sleep.

Needless to say this is rather boring.  I do have something interesting from Dr. Brain about bipolar in general but I'm going to save it for when I am more coherent.

I hope this begins to back off soon, which will let me actually post thing instead of just writing them as I have been doing (I fall asleep and what I've written is invalid by the time I return).

For now, fighting to stay awake until meds.  I've been up a whole 3 hours although my nap was short today because of dementia cat.  Who I am sad about because she's had trouble getting into my bed because of arthritis and I have only picked up her and put her in bed when she clearly wanted up.  The last 2 days I decided enough of that, if she's going to be wild cat then I'm going to manually calm her.  turns out she's missed her time in the bed and behaves better if I do that.  It only took me several months to figure it out.

Friday, November 11, 2011

I was afraid of that

I haven't posted in a few days.  I wrote a post.  I tried to post it.  My computer crashed.  I forgot to see if it ever posted.  I haven't been up for much writing the last few days.  The exhaustion hit very, very hard and all I've wanted to do is sleep.  Dr. Mind tells me to sleep then.  So I am.  It feels very good although it also feels like I should be trying harder to get up.  But my body is making it very clear that it is trying to make up for some of the rest I haven't gotten in the last few months.  Tomorrow is Dr. Brain day and so I am going to have to be awake for more than 3 hours.  Oh well.  The point of  making Tuesday really intense was to see what happened.  What happened is that I used up the tiny amount of energy I had left.

So this post isn't much either but I remain so incredibly tired that I can't figure out what else to say.

Tuesday, November 08, 2011


I planned for today to be hard and long to help test my abilities. Based on the fact that I should leave in 20 minutes and don't have clothes on and am still sleepy makes me think I am not there yet.  Saturday I see Dr. Brain for return to work discussion #204.  I'll know more by then but for now I am still fighting to sleep and anything in my schedule means being extremely tired later and I still can't get enough sleep unless I take lunesta and then I sleep too much.  I think that the next 3 nights I'm going to commit to using it and see what happens.

OK, 17 minutes left (flexible arrival time at least) so gotta run.

Monday, November 07, 2011

That's over. I'm tired

The sleep study was interesting.  I guess.  One of the first things I did was discover the side of my toilet was covered in blood.  Like as in someone fell and hit their head blood.  I pointed this out to the nurse who didn't care.  Her big offer was to get housekeeping to come up and since I can't breathe their chemicals I declined.  I am so annoyed that she did not bother to get a wipe and clean it. And I don't believe there is any chance that wipes weren't around; they are required for hygiene purposes and I have cleaned any number of messes over the years to ensure people were comfortable.  My nurse was not my favorite person.  Not very good at ensuring privacy, kept not listening to me say "yes, i've worked in healthcare for 11 years, I do indeed know what this is" and continuing to explain at a very simplified level.  They also say lights out is 11 and I need that because of how my meds work, but come 10:15 suddenloy I was in a dark room.  So the time it took to fall asleep had a lot to do with I have been reliant on meds to sleep for most of my life and they weren't given adequate time to work.

Otherwise it was ok.  I had trouble sleeping on the wrong side of the bed.  I have no idea what happened through the night; I know once I woke up on my back and rolled over and took a bit to fall back to sleep.  I'm pretty sure I never was up because I think I'd remember asking the eerie little green video light to please unplug me from the wall. It was very odd to be awakened by said little green light talking to me.  They gave me a coupon for breakfast to let me wake up more but after a very long shower to get all the glue and gauze out of my long, curly hair (3 shampoos, lots of picking at it and then the usual heaps of conditioner and combing in the shower to decrease tangles) I just did not feel like anything but going home and sleeping and I knew I was safe enough to drive.  So I did just that, and I suspect that I did not sleep as well as I thought because I am wiped out today even after a 3 hour nap.  I have no idea if I wakened frequently, slept lightly, whatever because of my meds.  I can't imagine though that I'd feel this beaten up if I had slept well.

I will probably hear something in a few weeks.  If I have apnea then I'll do a 2nd test with trials of different masks and I will be hoping to have someone a little less...lazy.  I guess that's the best description.  Definitely with the blood, but also with the lights out timing and with bothering to change her usual lecture into something appropriate for someone with medical training.  I have a big pet peeve about that, especially because not only am I telling you that I am a healthcare professional all of my paperwork tends to be written in medicalese because it's how I think.  She had read a ton of paperwork so I know that she'd seen that as well.  I once went to PT and the therapist didn't read the personal information section but when he got to the breakdown on tendons messed up in my left leg he started to say "um, are you a ..." and right then a PT that I knew walked by and started talking to me and said something about don't try to fool her, she's an OT and then they started trying to recruit me.  I laughed so hard because he shifted gears 100% and gave up on the 'when your kneee is unstable and you twist it..." lecture and went more to "ACL laxity along with your history.  Exercises.  Here."  I never even went back because I could do it on my own.  My pet peeve thing has grown over the years though as I've grown more and more accustomed to having doctors who listen to me.  One thing that was kind of neat at my psych stay was that I was asked to talk to the psych interns about my condition and history.  The doctor in charge told me that I was knowledgable and articulate about my unusual situation.  Truthfully I was the only real choice; the other two patients one thought he had stomach issues (nice person, I just was confused why he was there) and the other was confused.  (Funny story, she got all worried about having left two little bars of soap in the shower.  To calm her I told her she could shower first but then I checked on her and she was in bed so I went.  While I was getting dressed she knocked on the door and proceeded to carry on a long conversation with me about the soap and did I get rid of it and how did I touch it and did I get rid of the soap?  I kept threatening to carry on soap conversations with everyone when they showered.  Not nice to make fun, and it was intended as that, it was just a very weird thing to do while naked).  But anyway, I did that and the interview was cut quite short by the person who had to interview me knowing nothing about akasthesia, leaving me to deliver a small lecture to the room to explain the different types of the syndrome that falls under.  The dr. in charge then asked if I had anything I wanted them to know and so I got to talk for a minute about being an atypical patient who suffered because of a lack of people wanting to creatively look for why depression treatments weren't helping me despite my being "too successful" for bipolar, much less the kind of bipolar I have.  That's twice lately I've gotten to be a learning experience (aside from the intern who admitted me and she NEEDS practice); I had a medical student sit in on a session with Dr. Brain and asked some questions and we talked a lot about my functional abilities versus expectations and how I can be so hard to assess that even Dr. Brain had missed a mania a month or two before until a few hours after the session when it hit me that I was manic and had been with her.  He then probably got completely lost as this was the session just before the akasthesia and we discussed and chose some extremely unusual treatment options.  He also got to see us talk in code:  Me:  And if this doesn't work what happens? Her:  We'll hope it works. Me:  You know I know this is not good and I know where I'm heading.  Her:  I'll tell you when to worry.  For now, try this.
(For completion sake a week later was Her: And if this doesn't work you can increase the dose tomorrow, but after that I'm afraid we're looking at hospitalization.  Me:  I know.  I'm getting ready (emotionally). 5 days later I was admitted and that was because of the delay for a smaller weighted blanket, which I am SO glad I did.)  If I had that blanket at the time I think I would have asked to just plan to start the admission process Monday so I could go Tuesday.  I guess we really did though, it just didn't work out because of communication stuff for me to go until Thursday.

As I get older with this disease I realize more and more how much I want to help prevent some of what happened to me from happening to others.  I sound ancient saying this, but when I was diagnosed there were only 3 approved meds:  lithium, tegretol and depakote.  Now there are probably 15 meds approved for bipolar.  It took a long time for people to understand that bipolar was treatable and that signicifantly large enough numbers of people were diagnosed to benefit.  (That is one thing that the addition of bipolar 2 did to medicine; when I was diagnosed it drove me crazy as it seemed EVERYONE was bipolar yet nobody was sick like me).  But during that period of overdiagnosis a lot of meds that existed for seizures and antipsychotics became approved for bipolar.  It still amazes me that lithium has only been available as a treatment since the 1970s.  Before that there wasn't a real treatment for bipolar.  So that makes me think that given another 50 years or so bipolar is going to become a bit more like depression, even my variety that is so hard to control.  I think that there probably need to be meds specific for bipolar instead of borrowing from other brain disorders.  The only one besides lithium (which is technically an antipsychotic) is just a combination of prozac and zyprexa (antipsychotic).  Anyway, I enjoy talking to those learning.  I also filled out my living will with a designation to donate my body and particularly my brain after death.  My mother asked why so adamently my brain and I wound up trying to explain that with the combination of a weird variety of the disorder and damage from not being treated and probably from some of the treatments as well my brain may have various changes that make it useful to research.

And that sure got off track......sleep test to dead????  I need sleep!  (And will get some; tomorrow is a huge day.  I'm going to babysit my niece again (I think I get to go to baby music class) and then I have a late appointment with Dr. Mind.  Getting tired of driving to the city late....So if nothing else tomorrow I will be tired enough to sleep and sleep well.  (Not that tired matters.)