Paranoia

One of the hardest parts of this kind of episode is that I become paranoid.  And I know it so I watch for it, but it means I wind up not trusting myself about anything.  But I also worry obsessively about interactions with other people that strike me as off in any way, assuming they are annoyed with me.  And usually they aren't.

Today it is Dr. Body.  He's been a little different when I saw him and then this email today.  When I saw him I was just surprised because he seemed less thorough than he used to be.  But he could have been busy and just hurrying; he said he was going to divide up catching everything up over a few appointments so that I don't get hit with a huge bill.  I appreciate that.  But it was weird and I was watching for weird because his practice was bought out by a hospital I don't like a whole lot.  So if he is going to be less thorough because of that hospital I'm going to be less thrilled with him.  But mostly it is my feeling like I annoyed him with an email that is bothering me and chances are very good I didn't and if I did I wrote it when I was manic and he knows perfectly well that I am sometimes manic and not as clear as other times.

I'm also obsessing about not seeing my nieces enough.  The baby is sitting up.  She won't be a baby forever and I am losing out on that time with her.  Anne is only 18 months from school.  And once that starts things will never be the same.  I know I'll feel better and have time with them again and my sister said they'll bring them up if I'm not better soon.  But I'm just tired of having my life and any routine disrupted by this stuff.

I'm also in no place to start talking about all of this.  I got a little more sleep by taking my PRN klonopin with my bedtime meds last night.  But I still don't feel good and am so thankful that I see Dr. Brain tomorrow.  If she can make the obsessive anxiety end that will be a huge blessing.

I did manage to do 3 loads of laundry and take a shower today.  That's huge. It was all because I had to pretty much but at least I did it. 

I have to finish a letter begging a drug company to subsidize my expensive Emsam habit.  That is far from easy at this point.  I really just need to fill in blanks but that is hard in itself right now. 

Truth

I am not doing well at all.  I haven't written because it is so hard to get words out and have them make sense.  My brain is flying through hundreds of thoughts at a time, or so it feels.  At the same time I'm very depressed and so I don't feel like trying to do anything.

This is what happens when I come off lithium.  For a long time I Thought it was just the effects of my increased dose of topamax sedating me.  But it's more than that.  There is severe anxiety that becomes obsessive and makes me panicky until whatever it is is resolved.  There is depression that makes me want to do nothing but sleep.  There is hypomania that steals my sleep.  It is a classic mixed episode and is the same type of response I've had to stopping lithium before.

Apparently it is very common to be manic about 4 weeks after stopping cold turkey.  I don't get manic alone very often (ever?) so this is what I have instead.  RIght now it is a big battle in my head to see which side will be worse.  Last time this happened I was still on a very low dose (it was after my 2nd toxicity) to let my body recover and see where my levels hung out.  I wound up hospitalized and suicidal.  The prior time I was off it totally and severe anxiety and depression, mainly focused on things that weren't even really things to worry about then were the big problems.

I see Dr. Brain Saturday.  I think I'll be resuming lithium.  I'll still have to go very slowly to avoid getting toxic again so I'll still feel bad for a while probably but unless she has a magic weapon that she's never mentioned before (and we've tried all of those) I think I need the lithium and will have to just deal with toxicity sometimes.  It's not ideal at all.  The toxicities could be my body's way of saying that it will not continue to tolerate this stuff indefinitely.  But I can't live like this and this seems to be life without it.  I had hoped that I'd be able to push through this part but unless she can give me something a lot more helpful than the topamax (which may have made it worse for all I know) I can't. 

I am just so tired and lethargic.  I am completely happy to stay in bed all the time.  Reading is getting harder and harder.  Writing this is very hard and is taking a lot of time and effort.  TV is beyond my understanding mostly.  I just can't do anything and feel ok.  I want to cry a lot but there's nothing really to cry about except that I feel crappy. 

This is a time that being back in the day when I could do various things to my meds myself would be nice.  Now I can't really because the doses are too high for most things.  I did cut my Emsam level down by skipping a patch for 36 hours and then using a lower dose.  I only have 6 more of that dose and they expired in 2010 so who knows how much I'm getting from them but it's only for a few days until Dr. Brain can fix it.  I have a PRN klonopin I'm not taking but I don't know when to take it.  I suppose at night when the anxiety is worst but I can't usually figure that out until morning.  I don't even know that this isnt' sabotaging myself; I sent Dr. Brain and email that said I did this, not asking permission and I have no idea if she got it.

Anyway, that's why I'm not saying anything.  Too tired and not feeling well enough.

The most annoying thing about the suicide precautions

For 2 years I have not been allowed to have many meds at once.  I am just now allowed to have 2 weeks worth (plus a snow week that I'm not sure anyone realizes means I really have 3 weeks worth) and that is partly because if Dr. Mind leaves then I need to be weaned off this because I won't have anyone to keep my keys for me.

The problem is that my memory isn't that great about routine things and so I am left wondering at times if my missing new refill is already locked in my lock box or where I have put it.  Tomorrow I have to search for the bag; I'm pretty certain it cant be in the lock box but I can't find it anywhere and I only have a few nights left, hopefully enough to get to Monday and access to the pill box.  This is incredibly frustrating but handling the meds is so automatic now that I really can't remember what I've done.  I know that I picked this up last week and it was a day or two before I saw Dr. Mind.  However I didn't do meds at his office last week so I can't have locked it up.  Unless I am remembering wrong and I picked it up 2 weeks ago and therefore did lock it up.  See the problem?

Oh well.  The pills are somewhere.  I just have to figure out where.

Weird

I grew up with a girl who was a natural athlete.  She played 3 sports and was very good at all of them.  In fact I learned the hard way that she was so competitive that she had a hard time having empathy for someone who wasn't as good or who wasn't competing because they were injured.  I remember her acting as if being out for a game or two was the end of the world while I quietly sat and kept stats for 3 seasons in a row due to injury.  In fact the only reason I ever competed after my first semester sophomore year was just to say I did it my senior year.  I was allowed to run cross country meets that weren't too muddy, too uphill, or otherwise too hazardous and it was a huge deal when I beat someone.  My main memory of her though was once I accidentally stepped on her hand and she threw a huge fit and yelled at me like I did it on purpose.  I'm sure it did hurt, the running shoes I had on had a sole with good traction that wasn't meant for skin but it's not like I was trying to tromp on her.

Anyway I hadn't heard her name in 20 years.  I really had totally forgotten her untl it began popping up what she is doing these few weeks.  She's a sport psychologist working with some athletes in Sochi.  And that's when it feels a lot more like some people get everything and others (me) fight constantly.

It's not that I don't know she worked hard to get where she is and that I don't think it's great that she is there.  What a dream realized.  I just wish my dream had been realized too.

I keep trying to remember that every year one of the school's awards was given that was supposed to be the highest honor for an athlete, something about exemplifying team spirit and leadership.  It generally went to the top athletes and she may have gotten it.  But she didn't get it for the same reason I did.  When they announced the award my year they first said the coaches had unanimously decided to give the award differently that year and instead of going to athletic leaders as it had in the past it was going to 2 people (1 girl, 1 boy) who had proven dedication to sports that exceeded that of anyone on the playing fields for all four years in any sport.  It was awarded to me (injured after completing 3 seasons and although I kept nearly making it back I'd get hurt and need more surgery and so I was out until that last somewhat pitiful cross country season) and to a kid from Saudi Arabia who didn't have the language skills to play football and follow the plays but who had a true hard for the game and did everything he could to support his team as a manager.  I got a lot of awards that day.  Only one made me cry.  (My grandma had just died and I was emotional).

But high school aside, I just wish that things were different and that instead of my biggest achievement of the day being that I told Dr. Brain that I can't increase Topamax because it is still knocking me out whenever I'm not agitated that I had done something worthwhile.

Someday.

Cycling defined a whole new way

Coming off lithium, frankly, sucks.  My mood is everywhere.  I have cried repeatedly because things remind me of Geraldine's tumor and how blessed we are to still have her and that she is here when enough is known that she is monitored for years to be sure it doesn't come back.  It is so rare and that is partly because most babies with this don't survive to birth or don't survive birth.  My sister is getting rid of all of her baby things and that is sad to see, even though it is probably for the best. This tumor puts future babies at risk for a totally different yet more debilitating set of issues and pregnacy and my sister are not good friends.  (This last one was so hard because her body was responding to the tumor by producing excess fluids so she was enormous and in a great deal of pain from that.)  Syria news has to be avoided or I sob (which is a pretty rational response).  Seeing how much better my cat is and how she has suffered makes me teary.  I could go on and on with things that have made me cry.

I increased my topamax dose and although I was on this dose before and didn't have sedation issues this time it kicked butt.  I have been asleep most of the last several days.  Today I finally didn't nap all day.  However my mom is sick so I stayed upstairs to avoid the germs.  We keep getting things but never the same thing so that there is a constant contagion risk.

I have spent a lot of time thinking how much I need m own space, which is just not likely for several more months.  It is hard to need to sleep and have someone watching tv at what is a loud setting for me but not for her.   I just miss the simplest things, like my foods.  My mom and I don't eat the same.  I will eat what she eats but she doesn't like my foods so I've been eating her stuff for months.  I miss my own.  Someday.

The transition has just messed with everything.  I'm sometimes really agitated and annoyed with everything and struggling to keep my mind and hands safely busy and much of the time I'm just depressed.  I'm having lots of nightmares and am throwing myself around in my sleep so much I almost fell out of bed one night.  It feels like my brain is yelling "lithium?  Lithium??? LITHIUM????????" and nothing responds.  It has been 2 weeks now so hopefully this will improve.

I watched my nieces one day last week and it wasn't the best I've ever done.  The baby was fussy and didn't seem to feel well and wasn't taking bottles.  Her sister felt ignored I think and threw a huge tantrum.  I have to get a routine going with them again and it's hard.  This week I don't know if I'll make it because I have migraine clinic Thursday which is very likely to kick my butt.  I have to figure out if staying up there afterwards makes sense or not because I thin the chances of getting a migraine from having bright lights shined in my eyes is great and I"d be driving home in rush hour and then the dark.  But I don't know about the $....it's hard.

I think it's hard pretty much describes life right now.  I am just so tired.  I no longer feel as sure that I'll fail this lithium stoppage trial as I was, but I don't feel like this is good either.  We'll see I guess.  Some of it depends on the topamax leveling off and seeing if that helps.  So far it is just frustrating because sleeping 20some hours per day isn't very helpful.

On the other hand I have had lots of time to work on a family tree and chased my great-grandfather's side clear back to 1400 in England.  I found a possible Sir _____  __________ (Phillip probably, everyone was named Phillip) and also evidence that one ancestor was an early settler in Massachutes, having to meet requirements to show allegience to Britian prior to being allowed to emigrate.  That was pretty neat.  Only a manic person would do what I did in a few days but oh well. 

So that's the fun that is my life currently.  Tonight I'm on less topomax so I have a chance of waking up to go see Dr. Mind.  Normally I might trade days but I've done that so many times lately I hate to and we need some groceries and stuff and with my mom sick I need to get them.  Our driveway is so bad Olympic events could be completed on it (the luge in particular) and I prefer to combine trips up and down as they are a scary adventure.  (It is uphill from the road, curves, is pretty well pure ice and the side goes over a steep embankment into a little wooded area.  Going over that embankment would hurt and probably total a car.)  I can barely make it up with AWD and the car in 1st.  We are supposed to get some rain Thursday and I really pray we do to melt some of it off before another storm (not the next storm, that is here or coming soon, but the one after that).

So, more when I've left my bed more than 2 times in a week.

No more

In the last several weeks I've had contact with the vet and several doctors.  I actually was in to see Dr. Body and will go in there again this week for my welcome to Medicare appointment (yes, they do call it that).  And I've had blood drawn.  And I realized that an entirely new phase of my life has come.

In the past when I went in to the doctor or for labs I usually was wearing scrubs.  If not I always had some little story that I could commiserate with the medical assistant/nurse/phlebotomist with.  (ie, yes I hate having my patients use my pens during flu season too but I don't get a choice because they have to sign off on my visit using my computer tablet pen.  Oh look, we have the same scrubs.  Etc.)  It made me one of the club so to speak.

I never thought a lot about it.  Most of my contact is with doctors who know why I am talking in medicalise.  But when it is someone new or someone who would only have known from what I was wearing I'm finding that I get weird looks more than I get acceptance now.  Back in November when I went to the migraine clinic they asked a question and without thinking I said "now I remember I was with a specific patient when the first terrible migraine hit.  Let me think when she was my patient" which resulted in a question about what I did.  My chart no longer answers this; it just says I am disabled.  And then I felt self-conscious.  I didn't say it that way to draw attention to my background, just I was thinking aloud, but then again at some point I want them to know that I fully understand a a great deal.

It's another way life moved on and I didn't notice.  I truly thought much of that was done.  There is still the potential for Dr. Mind to leave although that has grown smaller.  I think.  It's down to one potential job from about 5 but that's all it takes.  Moving on from Dr. Mind would be enormous but that's not something I can do much about now.  It's a weird thing though to know that he's sad as things don't work out and that the best I can do is feel sad for him because I know this was his dream yet something I so much didn't want for myself.  Which is so selfish.

I think it's another phase of the loss cycle, this realization that I'm no longer really a healthcare professional, just sort of a highly trained hobbyist or something.  As my rabid attempts to get off mailing lists pays off and the lists of licensed OTs lists me as having an escrowed license I am being recruited less and less often.  Which is good in that recruiting hurt but sad in that it's another step towards next year (I think) when I will end my licensure.

It's also another way that interacting with strangers can be weird.  I throw my vet off balance frequently by talking more matter-of-factly than she is used to.  But it's all I can do; it's who I am and how I think. 

It's mostly just a phase I didn't anticipate.  Like so many others.

Changes

I re-read Dr. Brain's message.  She said we "may" re-start lithium.  But the more I think about it the less I think I want to.  I cling to lithium because I know that there have been befores and afters and they have mattered.  But the truth is that the last time I was off lithium I was on entirely different meds.  I wasn't on Seroquel which has been more effective than anything else.  I wasn't on Emsam.  I was bouncing around trying to get my body to maintain a Depakote level and having little success and we were trying to avoid anti-psychotics because my prior bad reactions meant that I would have to stop working and go on one ultra-slowly.  I also had a great fear of both remaining options at that time-Seroquel and Zyprexa.  I had seen too many patients overly sedated on Seroquel.  That hasn't been true for me, even on a huge dose.  And Zyprexa I feared sedation and diabetes (family history is STRONG).  Turns out that I can take 10 mg of Zyprexa (a lot) and it doesn't do anything.  So the diabetes is just the risk that I have with my history and Seroquel and my psychotropic weight.  So maybe I don't need it so much.  It's hard to know.  But I don't want to go through another toxicity.  Ever.  If the risk of that is as high as I think I am not sure it's worth it.

Waiting to see Dr. Brain is going to be hard.

Next steps

I heard back from Dr. Brain who is out of town for a family function and can't really access my chart.  But she agreed that this was probably toxicity and I'm on the push-fluids, no lithium plan until I see her this weekend.  She said we may re-start it then but I'm not sure if she means that.  She knows stopping it will scare me and if I were her I'd want to have that discussion in person.  I'm not sure I want to re-start it.  It is a really important drug for me but that is 3 times that it has made me scary sick.  I'm still dehydrated by all my observational powers (and by knowing that I"m just not drinking enough). 

I did remember that I had lab orders that were supposed to be for a baseline for Dr. Body.  They were to be drawn this week but I decided to do them today instead even though he'll have to draw baselines again later.  This way labs go to him and if I need to go in for fluids tomorrow he will know.  So I used Medicare on day 2 of having it, although I realize that I should have gone in yesterday.  It just was too overwhelming and a plan for this kind of thing is also on the agenda for Dr. Brain.  The best option is always to get to Cleveland Clinic.  However yesterday there was no way that was possible.  I don't know how I could have gotten to the hospital 15 minutes from here without having major issues.  That hospital is not a good one.  I had an awful experience there that ended with my telling a nurse off and throwing my advanced degrees in his LPN face (not something I do often) and included them refusing to medicate me for a headache from a 200/100 blood pressure because I wouldn't/can't take ibuproferon and they didn't believe me and refused to look it up and then when I asked to speak to a doctor prior to taking a specific diuretic that I knew was not an ideal choice with lithium they said I refused the med and tried to send me home saying I declined treatment.  Which I didn't, I just wanted to ask a simple question.  I had to be nasty repeatedly and the care was terrible.  They even yelled at me for requesting a ltihium level, the most basic thing that should be done for a nauseous person taking lithium when it is 100 degrees out and the air conditioning at work is broken.  The 3rd option is about 40 minutes from here and has inpatient psych so they should have some competency in the meds.  The risk there would be someone screwing with my psych meds and I don't have the threat of an angry Dr. Brain there as I do at Cleveland Clinic.  But something needs to be planned.  Honestly if I have to go for fluids tomorrow I have no idea where I'll end up.  Dr. Body's practice was bought by a hospital which probably means he has the ability to call their ER and say "I'm sending a patient with ....." but I HATE the hospital he now works for. So hopefully that plays out in some way I have no control over.  Or I am fine.

As far as quitting lithium....ugh.  It is so effective.  It is also so scary that it can make me so sick.  I guess a lot depends on what Dr. Brain thinks the likeliehood of a 4th round of toxicity is.  I know it would be high compared to someone with no history.  But my level has drifted up and we've let it because I felt fine.  I think that had begun when I was toxic the last time.  I'll have to look it up.

And I forgot to give my cat her antibiotic because I was involved in writing this.  This is the hard one.  Pain meds are easy.  Antibiotic is not.  It is a big amount and appears to taste nasty.  In fact it DOES taste nasty; a drop got in my mouth last night.  Hopefully she's groggy and it goes right in.  We'll see.  That isn't the way my luck has been this week.  Actually not this year.  But things have to be looking up.  Surely.

Toxic relationship

I've been on lithium for 12 years.  It was started before I was diagnosed with bipolar and it made it easy to see that I had bipolar by reducing the frequency of the mood swings enough to see that my mood was wildly variable week to week.  Prior to lithium I cycled so much that  I just seemed moody all the time.  Lithium has in some ways been my most valuable med.  I've been off it for a few months before and the end result was that I learned "I don't feel like me without it".  I can't explain what is different aside from my cycling is a bit slower on it but there is something in it that my body needs.

Unfortunately my body also has issues with it.  I had been on it 4 years when I was toxic the first time.  That time was a long toxicity because I kept taking it several days and then vomiting, bringing my levels down so that they seemed normal as far as we could tell.  I was under immense stress and so the upset stomach and vomiting seemed to make sense as physical reactions to that.  It wasn't until I stopped working and forced the meds to stay in for 5 days so that I could have labs done that we finally learned that I was toxic.  For about a year after that we fought with it, trying to keep my levels steady and not toxic while still getting a response.  We tried stopping it but I missed it too much.  Finally we changed to a less commonly used form and a weird dose and I was ok for a long time.

The 2nd toxicity was just over 2 years ago.  It was totally different.  I didn't realize anything was wrong until I was hallucinating and even then I kept telling the ER doctors that I was not toxic because I wasn't sick until I started seeing for myself that I was failing neuro exams repeatedly and then I could see little warning signs.  Going back on lithium after a 2nd toxicity isn't commonly done but I was allowed as long as I was good about hydration and labs because I benefit so much from it.

We were keeping my level very low for a long time.  The last time I was hospitalized the dr. tried to pull it up a lot which worked for a short while and then my level went back to being pretty low.  Over the last year it has drifted up more but since I've felt ok Dr. Brain was ok with that as long as it was monitored.  After my last labs in November she told me that my kidney function had leveled off after climbing slightly over the last several labs.  It was good that it was leveling off but she was warning me that my love affair with lithium isn't going to last forever.  The hope is that it will be good for another year or two and that something new will stabilize it.

Well, I suspect we reached the end.  Last Friday I go sick out of the blue and spent the night with vomiting and diarrhea.  I thought it was just a virus and went on with life.  Until today.  I woke up nauseous but ignored it.  I went with my mom to do a few errands and on the way back got so sick she had to pull over in our driveway for me to vomit (after flying to get to our driveway).  I made it inside and let my cat out of her carrier (she had surgery yesterday) and proceeded to vomit non-stop for an hour.  I have bruises on my head from the toilet seat.  I also had horrible diarrhea.  Details aren't needed but we'll just say that I was sicker than I've ever been before except maybe a tie with the 1st toxicity.  There have been 2 times that I have vomited so hard that I have peed myself and been so sick I just sat/laid there in it.  Toxicity #1 and today.  Not a good sign. I have numerous symptoms of toxicity along with "been there, done that" and the exact pattern that I had the first time:  vomit/diarrhea badly so levels come down, feel ok, levels hit stable and get violently ill again.  I emailed Dr. Brain and am not taking anymore lithium until I hear from her.  I didn't see any point to going to the ER for a level since the level would have been lowered drastically by how sick I was.  Fluids probably would have been good but I'm slowly getting them in.

Regardless I both look forward to hearing from Dr. Brain and I dread it.  Combined with my kidney function showing strain and this (probably) being a 3rd nasty toxicity I have a bad feeling that I won't need to pick up the lithium refill I ordered last week.

And now I am so extremely tired but have to wait a while to give the cat pain meds and then sort through meds for what I'm willing to take.  Then it will be hard to sleep because I'm not putting nauseating meds in my belly which means I'll mostly be trying to sleep from some klonopin and zofran.  I can't seem to get enough fluids in so that isn't helping me feel great either.  (And is a good thing about probably not sleeping well).

I just wish I could pretend this didn't happen.