Too much

Last night the puppy cried because my mom wasn't home at bedtime.  I got him to sleep once and he woke back up and we were up until nearly 12:30.  (He's a year old so a puppy developmentally, not physically and he's stayed here with me MANY times without problems).  I got to sleep at 2:30 and woke to barking at 3:30 that I ignored.  Then we were up for the day at 4:35 AM.  He did let me nap some this morning but I am so very tired now.  (I also carried a lot of heavy things downstairs at my place we don't speak of).

Then I got an email with my bill for Cleveland Clinic.  For the last 2 years I've been on charity care there with my income qualifying me for 100% free services.  Every 3 months you apply and until last spring I'd hear pretty quickly that I was approved.  Last spring's application took forever to be processed and so this bill was horrifying; I suddenly owed at first glance over $3000.  Which is not money I have.  For some reason from the months assistance is approved it was only 50%.  By their online guidelines and detailed policy I still qualify at 100%.  I spent 90 minutes in 5 phone calls with people telling me different things each time and the end result is that I get to call next week and see if they have changed it to 100%.  I kept getting hung up on or once I was on hold and suddenly was sent back to the long entry menu.  I was so upset and frustrated and tired.

And then when I couldn't do any more I gave up and worked in the house that won't be mentioned and then looked again.  In actuality if they bill at the 50% level they are still not making me pay 50% of what the statement says it costs; instead I am billed 2 much smaller amounts, less than $50 per month.  Which would have been no problem if they hadn't let those pile up for a year and now will want them paid at once.  I could have paid it month by month easily.  Now I'll have to do a payment plan that could make it hard to meet my car debt only by 2015 goal.  Unless they realize their error and go back to 100% which they should as far as I can tell.  Using any criteria I can find I qualify for that.

There is also a chunk of it that is on hold.  Part is because in November I may have hit my Medicaid spenddown and I am late in getting that information back to them.  So November has huge amounts of unprocessed claims.  And then December and January are being held up because of my being late with the Medicaid thing.  They say I didn't return a phone call but I never got one.  I had one from my local caseworker that I returned but nothing from there.  Oh well.  I'm doing the best I can. 

In all if I have to pay it will be about the cost of what I have saved for upcoming expenses not covered by Medicare.  One of my meds may cost me $480/month during the donut hole period unless patient assistance makes an exception and continues to provide it.  I may not reach the donut hole this year because I have some meds already that I won't have to pay for until later in the year but $480/month depletes savings fast.  And if it goes for last year's medical bills then I won't be debt free by 2015.

Oh well.  Can't do anything until next week and if they don't fix it then I'll start a paper battle. 

But stress was what I was really not hoping for this week. 

And now the puppy wants back in.  Again.  He has been in and out at least 50 times today.  We have to lock the patio door because he can open it himself and does so happily, leaving the door wide open.  But he won't just settle into being in or out.  It's getting on my nerves heavily.  Hopefully my mom will be here in 2 more hours....

What a day

Dr. Mind was not very happy to hear my definition of crying has been "a few tears".  I knew that was coming.  He went through a whole thing about balloons with too much pressure popping and that my way of handling this means that balloon is going to pop with the consequences I think I'm avoiding.  We talked and I cried and then suddenly I was REALLY crying, the shaking, sobbing, can't talk kind of crying that I so rarely do even there.  And that was exhausting.  I don't know how to be open with my mom or family about this.  They don't get it and I hate the results of being open.  But I know he's right and I can't hide it either.

Then I came home and it was nice for a vast change in the weather and I still had a ton of energy so I did a bunch of work in my "house" that we don't talk about.  I sorted through my kitchen stuff and filled a box for Goodwill, consolidated some linens and packed up clothes to store in the basement, and then sorted boxes into "basement" and "upstairs".  Tomorrow my goal is to take all the basement stuff down there.  If I do that it will be started to look a bit like a living room.  I also have some boxes stuffed away; some in my room and a pile in a closet but those are things that are waiting for the closets to be completed.  So that felt pretty good.

I've had a rough night.  The puppy has stayed with me every week for 5 months and sometimes before that.  The last 2 weeks he has cried until I lay on my mom's bed and wait for him to sleep.  Which means I'm not relaxing myself and it doesn't work well.    I had to do this twice so far tonight because I thought he'd stay asleep if I microwaved something and I was wrong.  So I had to let him out of the crate and outside and then start all over.  Fun.  I don't know what to do about this; he can't just keep doing this every week.  It's too hard on my sleep.

I am concerned about a possible side effect from the Seroquel dose I'm on. I think I'm having bladder spasms.  Either that or I have a really odd UTI.  But bladder spasms match more closely and fit with my history of extrapyramidal reactions.  It's a little hard to know though because the reports online list side effects on the approved doses and I'm on about twice that (not quite).  It is an accepted, safe, and often used in tough cases dose but the side effects can vary from what is listed on the drug profile.  Anyway I emailed Dr. brain and I guess tomorrow will include a trip to the drugstore (3 in 3 days!) for a home UTI test.    I really hope it's a UTI because I don't want to have to reduce this dose that is helping, minimal though it my be.

And that's about it.  Eyes are tired from crying, body from unpacking, mind from thinking too fast and bladder from withheld urine.  Yippee.

Geraldine?

I got a little surprise today.  My BIL sent a video of 6 month old Geraldine in bouncy thing, bouncing and giggling whenever he told her to "hop".  It was adorable even after I saw her do it myself a lot of times last week.  Mostly it was sweet because that is who that child is:  she is sweetness and light.  Her sister is and always has been intense and the contrast in their personalities is huge.  When Geraldine cries you know something is wrong.  When Anne cried/cries you had to guess because a lot of things triggered sadness.

But it made me realize that somehow I have not yet completely finished coping with her illness.  Her surgery will be 6 months this week and she will have a follow-up sometime this month.  Those are traumatic for her and her parents and I don't think they will get easier.  Not only does each one represent another time they could hear that the tumor is back (and then they face testing to determine if it is malignant) but the exam and test are painful for the baby.  It has now been long enough that they will be more serious about the monitoring; recurrence is not usually found until at least 6 months out.

But it isn't just that.  It's that her illness was scary and I haven't really coped fully.  Because it was so rare you don't find webpages of people who have been through this.  You find statistics and medical studies.  And while they offer hope they also make you realize that  children per year are born in the US with the type and grade of tumor she had.  Nothing is known for certain about these things.  Most are found in pregnancy but the stage she had and one other stage are less commonly found on ultrasound because of the characteristics of the tumor make it easier to hide. There was no preparation. 

I feel haunted by my reaction to her the day after she was born:  I thought she was too pale and did not look healthy.  7 days after that we got the ultrasound results and the news that she needed surgery ASAP.  I had thought I was just seeing things, that because she was more fair complected than her sister I was reading things into it.  Now I know my medical antennae were on. 

But now she's pretty safe.  A recurrence should be caught quickly and that's the key.  Her surgeon is experienced with these things.  And she's growing and developing on target.  She's sitting and wants to crawl but hasn't quite figured that out yet.  She can be made content with nearly anything for long periods of time as long as she is being held for most of it.  When she was sleepy and I was singing to her softly she put her cheek right against mine and relaxed into me.  When she smiles her entire face scrunches up.  She's here, she's alive, and those two things are blessings that we might not have had.  Somehow I'm finding it hard to not think about what we might have missed.

These episodes are morbid.  I'm sure that's what is happening.  But I really want this part to end.  These things are not happening and they are over with.  Somehow I just didn't fully cope back then although I thought I did.  Surprise!

And that is bipolar disorder.

deep and dark

Throughout this episode I have cried.  But the crying has been limited to tearing up.  I cannot just cry even though I need to.  I almost did with Dr. Mind but couldn't.  I think we're going to increase my sessions for a while to help with that.  And it's not unusual for a mixed episode to do that to me; it's like the emotions are being pulled 2 different directions.  Dr. Mind is pretty good at helping me get some of it out.

What made me nearly cry last week was saying that I think I've been using a huge amount of will-power to not have episodes that amounted to much since I've been in my moms' house.  She sees this one, it's impossible not to, but she also doesn't see it all, partly because I try to hide it and partly because I stay up here a lot to avoid noise downstairs.  (Today I did read downstairs for a couple hours while I washed my sheets and I wore sound blockers to avoid TV noises.).

I think it goes further though.  I think I'm also refusing to let myself feel the way I do.  I've had minimal suicidal thinking and that's great.  But I'm noticing that I do have the thoughts and that I tamp them down instead of handling them or admitting to them.  I think that I feel like I owe it to my mom to not be that sick anymore.  Ever.  And I know I can't control it like that or it wouldn't ever happen.  I am trying to hide all that I can so that mostly she is seeing my very tired self and some mood swings.  She also has heard about some nightmares and has seen me panic when I thought that the tv was her.

When (if?) my new place is ever done I'll have a place that I can survive these times more genuinely.  I think it will still be really hard.  But living as we do right now I am not comfortable with the symptoms.  I realize that this means that 12 year after diagnosis I still haven't fully accepted it, although in my defense I think I had and then 2 years ago everything got so much worse and changed and I haven't caught up to that.

I just hope I can tell Dr. Mind.  I think he kind of knows this but isn't certain.  We'll see what the *&(* (forgive me, I've never sworn here but the time change deserves it) time change does to me but right now I think if I have the extra counseling I can make it 4 weeks to see Dr. Brain and then it will be much easier to figure out a new path.  It means 4 weeks more of not feeling fabulous but I am getting a bit of sleep most days and that helps.  Last night was a really bad one and then I finally got tired and put on relaxation music and that actually helped.  So it's hard to guess what tomorrow will be like.  Well, tomorrow itself will be likely to suck since the time change is tonight but  tomorrow as a word for the future is more in the we'll see category.

What they left out

Today there was a talk show on downstairs that I could hear but I don't really know what it was.  It was about adult children moving back in with their parents.  It was obviously very, very different than what has happened with me. And I really haven't moved in here, it just feels like it because my house has taken so long to finish.  (Don't even ask.  I am not talking about it anymore.)

But they pointed out so many things that I glossed over in my fight to succeed in work and generally living.  They talked about how independence is important because most people meet their long-term significant others during their twenties and should be relatively settled into life in their 30s for maximum psychological health.

I hadn't thought about that so much.  I had other reasons for skipping out on the relationship/kids/etc. part of life but the truth is that I really did ignore everything in my fight to live independently and work.  I know that this doesn't mean no relationship will ever come along (no kids will) but I really missed out on my younger adult years because I was fighting to survive.  And I'm not sure that I'd seen how much I was fighting and leaving normal things out.  I always attributed all of this just to not caring because of my abusive past.  I was ignoring something else.

(This more coherent posting brought to you by Amerge, my migraine medication which knocked me out totally last night and gave me a night of sleep finally.  Too bad I can't take it daily).

Bane of my existence

My brother married a woman who is capable of triggering mood symptoms in me faster than anything but caffeine.  She is loud.  She knows everything.  She tells me how my treatments should be, based on her expertise as a former adolescent psych unit clerk.  She is bossy.  She hurt my brother badly and seemingly out of nowhere.  They separated 3 years ago and it was hard to see my brother sad and hurting but it was good to be able to tolerate family functions without drugs.  (Seriously she requires extra klonopin to be around her for any time at all).

And now they are reconciling.  Which is good for my brother who is very happy but I am having trouble with it.  I don't want her to hurt him again.  I don't want to be as stressed about family gatherings as I used to be.  I don't want the nieces to have another aunt.  (That's pure selfishness but I want Aunt to be like me.  She is not).  And she's back just in time to join our beach trip in May.

What every episode needs.....another reason for nightmares.

Patience gone

No matter how manic I am and how little sleep I've had in a given time period there come days when my body physically crashes and I get some sleep.  After sleeping mostly in 45 minute increments the last few days I finally got a 2 hour nap with only 1 brief awakening.  Then when I went to bed I was tired.  I was sleepy when I took my meds at 8:30.  I even was laying with the lights dimmed for a while.  And then the anxiety took over and it's 11:45 and I'm again wide awake and agitated.  It feels like I could just roll over and sleep but that doesn't work.  I don't get it.

I still don't know what is happening next.  I think i"m going to wait until Monday to bug Dr. Brain again just because that way I can be positive it isn't anything to do with the girls being here.  It's not but I'll make sure.  I don't want to add another med without knowing for sure that I tried everything else.

I just want to be done with this.   But that's not how it works; this will end but it will get me again.  And again.  It seems like you should get used to it but I certainly haven't.

RE:

Sometimes a comment comes along that is easier to answer as a post,or is better to answer as a post because the points are really valid.  Today we have one of those.

Jean Grey wrote:

I don't think that most of the older, typical antipsychotics are that bad for weight gain compared with the atypicals. Clozaril is another story, it is pretty bad- but so is Seroquel. Just a thought- I wonder if Ensalm is the right drug for you- as it is very strongly dopaminergic, and you seem to respond to large doses of the antipsychotics which are dopamine antagonists. And to really play devil's advocate- if you are rapid cycling, should you be taking an antidepressant? But I know that I need antidepressants, so I am just tossing that out. But research does not support the use of antidepressants in bipolar.

First, thanks for the reassurance about weight gain.  I just don't want to go there.  Although sometimes I have had weird weight gain.  I gained a great deal on lithium really quickly (60 lbs in 4 months) and then on Depakote which is supposed to be much worse for weight gain I only gained 8 lbs in 6 months.  I gained on regular Seroquel but lost it when I changed to XR and dropped Depakote.  So who knows.

I need to be on antidepressants.  I had been on so many before diagnosis that they were stopped then and I didn't use them for years and I was continually very depressed. In fact it was when I was reading about bipolar and realizing that this is what I had and then that people with bipolar shouldn't be on ADs that I managed to get it together long enough to see the guru who diagnosed me.  The problem was that off of them I stayed mixed all the time because I was depressed every minute of every day.  So we tried again.

 I was ok on Remeron for a while then had some problem with it and changed to imipramine.  I was on it for years and it was fine except that I had to mess with the dose all the time.  Emsam works well for me because it is more dopamergic; the other antidepressants trigger mania because tweaking serotonin or norepinephrine is bad for me; it makes me manic.

You are right that my need for dopamine and my need to antagonize it contradict each other.  Perhaps it is is different receptors?  Emsam is very specific what receptors are targeted and they may be different than the anti-psychotics hit.

I think that if I asked my dr., and I probably will since now I'm curious, she'd say that this is just another one of the many ways that my body reacts to medications oddly.  I may need huge doses of anti-psychotics only because smaller ones aren't absorbed or something.  We know for sure that my body processes meds differently than most people; there are few meds that I don't need either a really high dose or a really low dose and even then it's hard to get the response we want (ie sleep from something most people find extremely sedating).  I need an MAOI because other antidepressants either cause cycling, make me very sick (Wellbutrin; I lost 15 lbs in 6 weeks back when I only weighed 120 to begin with) or require a dose range that is very tight and leaves no room for an increased dose if severe depression occurs.  I've had that horrible reaction to the progestin in the Mirena, akathesia from surgery/Reglan we think, and after my hysterectomy they gave me the first dose of morphine after waking me.  I remember a lot of people telling me to breathe and to stay awake and an ambubag on my face.  I thought it was a memory of being put under but instead it was the morphine put me back out and they had to reverse it and lower my dose a great deal.  I didn't even react normally to vaccines.  After finding out that I wasn't immune to chicken pox after having pertussis we ran titers and while I was immune to everything my immunities were on the low end of normal and one  was barely normal.  So it's probably related to those things. 

I just wish that what used to work still did.  But they don't so we do this instead.

no, no, no

So last night I cracked a Seroquel and took 1/2 of it.  The increased me from 900 mg of extended release to 900 mg of extended release plus 150 mg of immediate release.  I fell asleep quickly and while my sleep was restless I did sleep through most of the night and napped through the day.  I still was moody and very teary today but the sleep was good. 

Since the sleep wasn't perfect I increased tonight so that I had 900 mg of extended release and 300 mg of immediate (this is a HUGE overall dose and a very large dose of extended release even if I weren't doing the immediate release as well).  And that was 3 hours ago and I'm not at all sleepy.  This is not a good sign.

I was counting on this working.  I very much do not want to have to add another anti-psychotic.  I will if I have to but I hate adding unfamiliar meds and these old ones we're going to be using are unfamiliar.  I will admit my biggest concern is weight gain and while that probably shouldn't be my first concern it is.  I have been losing some weight by being careful and I really do not want to regain it, much less gain any more than that.  I'm so tired of feeling self-conscious and fat.  And my impression of these older drugs is weight gain, weight gain, weight gain.  The one I think is the first choice I don't think actually is a huge risk for weight gain but I'm not sure about that.  I also do not want to be overly sedated.  I need more than I've had lately but when a new drug is thrown in it can be hard to balance needing that drug and the side effects, particularly when they are cumulative with 4 other meds.

All I can do is hope to fall asleep soon.  If I don't I guess I call Dr. Brain tomorrow.  And that's the last thing I want. 

I am so grouchy right now....

Things you don't want to hear

I saw Dr. Brain today.  She did not say I can't go back to lithium.  However she is guiding me away from it and wants to try other drugs first. Since they are rather extreme options she REALLY doesn't want me to go back.  She says it is better to keep trying to find something to replace it if we can.  I understand and agree; I'd need to stop it eventually and since we know it's very hard it might as well be now when I have a month under my belt.  But it was one of those conversations you have and then later start thinking "WHAT???".

The ideal would be to put me on Lamictal.  However my history of having had the rash severely and in the location where it was means that I can't go near it again.

We went the conservative route and bumped my Seroquel up even further.  I'm breaking one pill to make it immediate release so that hopefully that makes me sleep.  Tonight I took half the broken pill; tomorrow I'll increase to the whole one if tonight doesn't work.  If that fails the plan was to re-try Latuda.  The problem is that I can't afford Latuda and Emsam both.  And Emsam is more vital.  She doesn't know about that problem yet.

This is where things got a little scary and very clear on where I am right now.  We talked seriously about Clozaril briefly.  Clozaril is a very effective drug that requires very serious monitoring because it can wipe out your white blood cells and kill you.  So for a long time you have blood drawn weekly, then every other week, then monthly.  She decided that this isn't ideal for me right now.  We then discussed every atypical and there aren't any left except one that interacts with Seroquel.  That leaves some older anti-psychotics.  Not truly terrible ones like Haldol or Thorazine, ones that are rarely used and I hadn't heard of them (maybe one, I think one was Prolixin and she gave the generic name but I'm not sure and I don't think that was the first choice).  But those drugs aren't pulled out lightly.

New antipsychotics are expected this year.  Undoubtedly my insurance won't cover them easily.  I chose a cheap Med D policy and couldn't figure out what made it cheap. The answer is that it doesn't have a broad formulary and since it is absolutely impossible to anticipate what meds I might go on during a given year I didn't pick up on that.  We'll see how it goes this year and maybe next year I'll discuss potential meds with her before I choose a plan and try to guess ahead a bit.  I think her hope is to get me on one of them.  Unless we can get patient assistance I'm not sure that will happen.

There are many reasons the old ones are bad.  They can cause extrapyramidal symptoms which I have a history of on meds that rarely cause that.  So that will have to monitored.  They can cause permanent problems called tardive dyskinesia (and I'm leaving you to look things up because I'm tired).  They also are more likely to cause weight gain when I'm trying hard to get some of the weight the changes in the last year have caused off and I really am opposed to gaining much more weight.  They are more sedating and require dosing during the day which is not easy for me to manage. 

So I pray the Seroquel works and if it doesn't I'll have a whole new adventure I guess.

I miss lithium.