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.

Waiting

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.

Weird

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.

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.

Answer

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!).

AaGHHHHHHHH

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.

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.