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

Sunday, October 04, 2015

68

I know I'm not posting here anymore but I need to.  At the rate I've managed to shut this thing down maybe I'm not meant to do that.  Although it is still the plan.  When/if I ever feel better.

I feel so weird right now.  For months I've been a depressed lump with no energy and nothing but sadness.  As recently as Wednesday I felt that although I'd started laughing about once a day and was told my speech was improving I was just not getting better and all the bad things in my future plan with Dr. Brain were going to happen.

Then I honestly just let my junk food cravings take over.  I've just been getting my appetite back and it's still limited to a few things and a lot of it was junk. Once I ate a bunch of junk I had more energy.  Not surprising since I've had a lot more chocolate that I should and there's caffeine in that.  Since I'm not used to caffeine enough crappy low-caffeine chocolate still seems able to affect me.  So not good.  But self-limiting as the candy will be gone soon and I'll be back to healthy food.

I don't even known if it's the food.  I tend to think it is because this seems to be anxiety.  I've gone fro not being able to stay awake to having trouble falling asleep yet have no other real signs of mania except a lot of fast thinking about what I'm worried about.  I still am very low energy; a shower and getting dressed is a huge ordeal.  So the depression continues to rage on.  But it maybe is a little different.  I'm not going further than that because in 10 months I've thought wrong too many times and I know perfectly well that the med situation makes really having something big happen not so likely.

The med thing is scaring me.  I don't know what to do.  I know that I am 100% maxed out on everything I'm taking.  The next step logically is to try a tiny, tiny bit of lithium, mainly because the difference between this episode with its' psychosis and duration and the years of other episodes has been that I was always on lithium before.  But because of my toxicities it will mean really watching closely for my level to go even close to a normal level.  And I am concerned about taking away my ability to take advil as that's my best bet for most migraines when they start since they never start at home where I can take my triptan.  Driving is my biggest migraine trigger and if I can't pop advils I'm going to be taking a lot of norco which isn't so great.  We have to talk about that.

But if I don't try lithium then we're left with the 2 brand new anti-psychotics, neither of which is approved for bipolar depression and neither of which is necessarily the most ideal med for me.  There are 3 others I haven't tried because 1 I did try but not long enough (Latuda), 1 interacts with Seroquel and one is the active metabolite of risperdal which causes my blood pressure to skyrocket.  I keep wondering if I should find a way to shell out the several hundred dollars to get one month of one of those just to be sure before we get more drastic.  After some trial time I could go on patient assistance if it worked.  But I don't want to waste money if they are unlikely to work.  I need to talk to Dr. Brain about that possibility.

And then there is ECT which I still don't know if I was accepted to do (and if this little boost of anxiety will negate that) or clozaril, the drug that requires weekly labs and can have some side effects ranging from annoying to deadly.

Or maybe I need to try to change Med D plans to one that covers another MAOI and just hang in there until January.  If that's even possible.  I can't price programs until the 15th.  

I worry about money.  If I am re-admitted to the hospital before Oct. 27 I don't have to pay a 2nd co-pay so if we are doing ECT or clozaril it is financially beneficial to choose that at my next visit in a couple weeks.  But those are both enormous decisions.  Which means that I probably will be delaying admission and my medical debt will be increasing.  By a lot.  Every admission costs about $1200 plus some assorted dr fees.  ECT will have more although I'll just hit my medicaid spenddown and that will be the end of that.  

I just feel like I am at a place where there is no good decision left.  I've been on 68 cocktails now, without counting the hundreds of dose changes.  It is reasonable that there is this looming NOTHING LEFT thing.  That's been coming for years and we've barely stayed ahead.  It sucks enormously that Medicare makes name brand meds so ridiculously expensive.  If I get one month of one of the meds I've not been on that's more than 10% of my income gone just for one med.  Granted if my hospital allowed samples it would work a lot better but still.  Sick people should be able to get newer, better meds.  Because in reality I still have meds I CAN try.  But they are likely to just cause EPS all over again.  Very likely.  And I'm not willing to do that 8 or 10 more times just to have tried the remaining very old meds on my list.

I also feel like I'm running against the clock.  In November SAD will hit.  With nowhere to adjust my anti-depressant.  Or mood stabilizers.  My light helps but only if I'm stable enough for it to not trigger cycling and I don't know that it has ever taken care of the problem without med adjustments too.

I'm overwhelmed and yet I feel like I should be so happy because I'm not the same as I was Wednesday.  But I'm not sure how much that word I'm not saying this is; it's maybe some but it's also maybe just being masked by anxiety.  And possibly chocolate.  (Which I've really not had that much of today, I'm exaggerating.  Yesterday yes, I had way too much.  Today, not that much).

There is so much I'm missing because of being sick.  I haven't seen my older niece in well over a month.  I NEED to see her.  The baby I've seen but it's been several weeks and she has really started talking since I saw her.  But it's hard because the older girl is in school all day every day now and getting up to go see her on weekends is so incredibly hard when I am this tired. Until earlier this week I was sleeping constantly.  Then about Wednesday or Thursday I started sleeping a lot less but still have no energy for anything big.  And she is noticing.  The last time I saw her was right before I was hospitalized and she noticed both that I was sad and that I kept staring off into space.  Which is a lot to explain to a 5 year old.

There's just so much.  Dr. Mind keeps telling me I've been sicker.  I'm sure that's true but treatment has never been so scary.  And because I don't remember the other times it doesn't seem like this isn't as bad as it gets even though I have vague memories of other times that I was.

I just don't know what to do.  I can't wait to see Dr. Brain again.  But even she only has so many answers at this point.

Thanks for listening.  Now maybe I can sleep without extra meds.

Happy.  I remember feeling that once.

9 comments:

Jean Grey said...

I wonder if it is worth trying hormone replacement therapy. I have just spent the last month off of the BC pill for various reasons (such as being too depressed to go the the pharmacy and then losing the medication). I am so close to losing it- and taking so much Zyprexa and klonopin. I was reading that lack of estrogen can cause D2 receptor supersensitivity (there is actually something caused premenstrual psychosis).

Just Me Jen said...

HRT is completely out because I had such a bad reaction to just the teeny dose of hormones from the Mirena and from birth control pills years ago. My gyn and Dr Brain both feel strongly that hormones are bad and it has seemed to be true as I've gone through menopause I've overall done a great deal better. This last 10 months aside but the 2+ years before this started since my hysterectomy to this episode showed that my body really hates hormones. That is the one thing I've got going for me; if I still have normal hormonal cycling I would be much worse off. Even Dr Mind has said he can tell a difference without hormones destabilizing every few weeks.

But that is an idea that hadn't come up.....

I hope you can get everything back under control. I'm sorry you are going through so much.

Michal McAllister said...

Thanks for writing, Jen.

I'm listening.

Praying, too, for your many concerns.

I certainly wish that your path was clearer and smoother. Sigh.

Keep sharing...

Love!!!

Rachael said...

I'm hoping you will feel happy again. Very soon. Take good care, dear Jen.

Just Me Jen said...

Thank you both Michal and Rachael. I am bouncing all over the place right now and have absolutely no idea how I really am feeling. But I appreciate the support very much.

Michal McAllister said...

I would love to hear from you again soon.

My thoughts and prayers are with you, sweet Jen!

Hugs...if a hug sounds good. :) I have it on good authority that I am the best hugger in the world!

Jean Grey said...

What was your experience with Latuda? I know you say you weren't on it very long. I have been considering it recently, hoping it would help with depression and energy, but worried about EPS side effects, and ultimately TD as it is a stronger D2 antagonist than Zyprexa (as least at the dosages that I take Zyprexa). But it is supposed to be better for cognition.

Emily (Jean)

Just Me Jen said...

At first I thought Latuda was great and then I felt like it wasn't doing anything after the first dose increase. It had essentially no side effects and was probably the easiest antipsychotic I've ever been on. But when it wasn't working well at the 2nd dose I quit. I was in such a bad place then, suicidal with a plan and intent and lying about it to everyone as I realized I was done working (and I went on Latuda very soon after hospitalization for lithium toxicitiy so my body was off-kilter too). So it wasn't ideal testing conditions. However Dr Brain did not push me to keep trying so she must have felt it wasn't helping either because with my history I can't just give up on meds that easily. She verified that when I asked her.

I had no EPS symptoms on it. If I'd taken it longer at a higher dose maybe I would have but I am so susceptible to those that my not getting them was a pretty good sign. My psychiatrist isn't even considering other typicals now because my risk of EPS is so high and will always be very high on any drug with a higher risk of it. A new drug called caraprazine is just out and it has scary high EPS risk (15% akathesia and I think 10% EPS or something like that) so I'll not be trying it. Rexulti has about a 5% chance or something like that and we're trying to get some of it to try so that's my upper risk threshold (and it may be too high a risk but it's Rexulti or try ECT that I'm not a super candidate for or Clozaril. One of them within a month).

I know it has been a miracle drug for a lot of people. There was a time that between people in the hospital and people in NAMI I kept hearing people say "I just started this brand new drug and it is making a HUGE difference" and it was always Latuda.

Like I said, no side effects. I don't even remember being drowsy. So much easier to handle than zyprexa. I think it is worth a try; you can always go back to zyprexa if needed but less sedation, less cognitive effects, less weight gain, less almost everything is worth a shot. YOu may need something added for sleep; unless I remember completely wrong it wasn't very sedating. I'm pretty sure I was taking Lunesta with it.

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