Not that good. I do understand from Dr. Brain that my body has to re-adjust to a lot. I was pretty blunt with her last night and when she answered today she said she thinks that things still will be ok, I just have to be patient and not give up. However, she also said she thinks it is "possible" for these meds to work again. That means translated out of her optomism that she doesn't let me see go away until she is sure, that she really doesn't know. I may not be better in just a few weeks like I hoped. A lot of things may happen that are pretty ugly and all we can do is hope otherwise.
Right now, and bear in mind that not only is my lithium screwed up and this messes up a lot of things in the body and will take a while to sort out, my Seroquel is still messed up. My kidneys have just been through a lot and while my labs show that they managed beautifully, there are also labs showing that my kidneys had to fight (my creatine is low meaning hard working kidneys (thank God as lithium toxicity can cause you need dialysis) and my CO2 is either high or low, whichever isn't desirable, showing my kidneys were struggling to get rid of everything. That may make me feel bad too. Restarting lithium is always hard for me as it tends to make me sick. While it's been on a third of my normal dose this amount won't be enough to fix things and sometime when I'm a bit adjusted I need to increase. My thyroid was already damaged my toxicity #1. It will be several weeks before we know how it withstood toxicity #2.
I also am emotionally not handling my hospital stay well. Lack of sleep and needing to constantly fight while being aware that people were avoiding me (seriously someone is supposed to check each hour per the signs in the rooms. If I didn't ring for more water or for my urine collection thing to be emptied I could go hours without seeing anyone, esp. if I didn't either walk over or talk to anyone who came to care for my roommate. I felt more stigma and prejudice there than I have in a long time. So much happened as people (some, not all) tried to avoid me. The nurse who pulled my IV never put in anything to keep it from clotting. This left a couple scabs and a lump in the vein; I knew it was bugging me but not why until it was pulled without bleeding, then I could see where the cathether eventually worked its way out and poked me. I can't even explain how I felt in there (besides furious) and the effect on my mood is very, very negative. My self-confidence hit rock bottom last weekend.
I went back and started reading journal entries from toxicity #1. I need to read the blog entries too although I was only starting to write about personal stuff then. (hard to believe, I know). I felt a lot of things then and I keep reminding myself that I did and I didn't have the horrible hospital stay the last time. It's just that if you are really good about meds as I am and very protective of lithium as I also am because typically I wouldn't be allowed to be on it because of diabetes insisidus but a way was found to make that work, you don't expect any of this.
I also feel dumb because I didn't question not feeling quite right for a couple weeks, off and on but in ways that were subtle warnings. I thought I knew toxicity and this was not it. So I'm now fighting with myself because I now didn't aknowledge those lithium signs even when I know it's better to say "hmm, this is weird can I get checked" and I didn't forcefully promote the akasthesia, effectively making myself sicker twice in a few months.
And I'm very worried about my job. It sound like I may be off a while longer. I have no idea why my company would want to keep me.
So I'm struggling. I slept a ton today.
I keep trying to remember that my old cat hasn't been able to get into my bed for months because of arthritis. I started her on glucosamine per my vet and the last few days she is consistently jumping down and jumping up (rather than climbing or wiating for me to help) sometimes. She's in the crook of my arm right now and I didn't put her on the bed. Since she's always cuddled with me and I missed it this is wonderful to experience and I'm focusing on it as a happy thing. If she can get better I can too. I hope.
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4 comments:
I'm glad that your warm kitty is a "happy place" for you right now. It's amazing that she's feeling better. I know your brighter days will come, too. I have to fall in to bed right now but will be praying for you. I know your Thanksgiving will be a quiet day but I hope you can find peace and strength to count some blessings and get a lot of needed rest.
I will check on you as often as I can and keep you in my prayers.
Warm hugs, Michal
Colossians 2:6-7
Amplified Bible
As you have therefore received Christ, [even] Jesus the Lord, [so] walk (regulate your lives and conduct yourselves) in union with and conformity to Him.
Have the roots [of your being] firmly and deeply planted [in Him, fixed and founded in Him], being continually built up in Him, becoming increasingly more confirmed and established in the faith, just as you were taught, and abounding and overflowing in it with thanksgiving.
Are you sure you need the lithium? Seroquel is a pretty good mood stabilizer per the research. Interestingly, depakote, not so great. (Tegretol is better, and most of the other anticonvulsants, not at all).
I'm starting to question meds more and more. I do think there is a place for them, but not as much as most psychiatrists think.
The New York Times is running a number of articles about high functioning seriously mentally ill individuals with psychotic disorders. This interesting thing is that, while most of them have used medication for short periods of time or are using them prn, they are not using medication long term. This does not mean they are symptom free- rather, they are using other means for dealing with their symptoms. This really has me thinking a lot.
Jean-
Yeah, I'm sure. Last time I had toxicity I went off it. That's how we found out what controls rapid cycling for me. Ironically what we tried in its place was tegretol and I reacted to that by being so sensitive I couldn't stay away on more than 1/16th of a pill (which is hard to cut) and that didn't do anything for my mood. We've tried another time without it and it didn't work. Ironically the plan about 6 or 8 months ago was to try weaning off it after my surgery to see how I'd do since I'd been doing so well. Because I have diabetes insipidus it's not the best thing for me to be on so I've been on a miniscule dose with .6 considered the highest acceptable level, .4 was preferred. The problem at this point is that I have been tried on low dose meds, high dose meds, combinations, 1 med at a time and really no meds since I couldn't keep them down with toxicity #1 for 6 months. The MAOI/relatively high dose serouqel XR (only XR)/lithium/klonopin cocktail has been the only time I've gotten to be stable. And during any of these trials I've gotten 1-2 hours of therapy/week and psychiatric appoints monthly. So I'm pretty positive we've tried everything. Getting off depakote, which was a very effective drug for me at very high doses, 3-4 years ago was a huge victory, but I only could do that because of XR. At this point I have no idea what is going to happen with meds other than the hope is to stay on what has worked. The trick there is dosing as I'm on a lot of everything but lithium and I won't be on much of that any time soon.
I wish I could be off meds. I just was reading things I wrote when off them during that other toxcity and I was a wreck and had no ability to see it. Therapy is an amazing thing for me but it's not enough on it's own; we work really hard with the meds on board to keep me going.
I guess I'll know Monday.
I'm THANKFUL for your note, Jen. Rest all you possibly can. It's sad that some days just have to be "endured." May you find some sweet blessings with your kitties and a glimmer of hope to sustain you as you make this hard transition. You're one strong woman.
Sending lots of love, Michal
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