It's been a long time since I wrote here. Not much has changed. I've put in a lot of time waiting and hoping for samples of one of the new anti-psychotics but that didn't happen. I did not want to be in bad shape for Christmas when I knew it was probably going to be a rough one as my brother was recently sentenced. (Which is a whole other post in that he got off very easy and I've been very upset about this). It's another one that is a big change for everyone and my being extremely unwell or in the hospital wasn't going to help anyone. So the deal was that I added a very low dose of lithium to my meds (that's cocktail 69) and I see Dr. Brain Monday and we will plan for tapering off Seroquel/admission to complete that and go onto clozaril.
The reality is that I've done everything in my power to avoid the clozaril. It is supposed to be a very effective drug but can have some nasty side effects, the worst of which is death. So for 6 months you have to have bloodwork every week and you only get your week's meds after that bloodwork. Then it's every 2 weeks for 6 months and after that monthly. They are checking to be sure your immune system doesn't drop off, which has killed people. It also has excessive saliva causing nighttime drooling and potential bedwetting as side effects. You can imagine how exciting those things are.
I dread the whole thing. Coming off Seroquel will be hard. My body is used to it and has tolerance and there will probably be some withdrawl effects. Apparently I may also have to come off Klonopin and that will DEFINITELY have withdrawl. And while they will start the clozaril in the hospital it is a drug that you go up slowly on so Dr. Brain already told me I won't be feeling good when I come home from the hospital.
If things work on the schedule I have in mind (depends what Dr. Brain says; I'm trying to get a few more therapy sessions before I go and I think she's off for a week anyway) I'll definitely be spending my birthday in the hospital.
I will try to update when I know more but this is the current plan and there isn't anything that should disrupt it. We agreed in November that I could manage one more month and that was enough of this. And since I've been having hallucinations and some more extreme paranoia lately that's just another sign that I need to get onto an anti-psychotic that is fully working for me. I've handled this episode for 11 months. I think that is enough and obviously it's not going to be all better without drastic measures. So I will be glad to get through that part of my life. This is my 40th birthday and I want a small party (family) and so have already told my mom that I still want to do it but when I'm feeling better so maybe a birthday party in March. Please God let me feel better by March.....
Anyway, I have done a bunch of sewing tonight. My goal was to finish except for final touches one huge project and to cut out 2 small projects. I got the huge one done, just needs a seem fixed and something else fixed. I had a pattern all ready to cut out the other and my cat sat on it and got something gross on the pattern. So I really need to go crawl around on the floor and make another pattern so I can cut out the 2 doll blankets for the girls. I'm becoming very aware of how little time I have to finish my goals for sewing. I've done 2 enormous projects (patchwork picnic tablecloths) and both are ready for me to check seams, repair a couple places, wash and iron and wrap(yay!). So that's probably tomorrow. But I'm also making doll blankets for each niece and hope to make them a 2nd smaller blanket for tiny dolls they already got from their great-grandma (and b/c I bought fabric to make a blanket for the baby and then it wasn't enough so I need to use it somehow) and then I have to finish one pair of pajamas and make 2 more. So I have a busy week ahead. Which is good. I can't read a book or follow a movie but sewing is automatic and repetitive so I can do it and it feels a lot better than aimlessly reading the internet or playing solitaire which is the thing that I can do better than nearly anything else.
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2 comments:
I'm glad that you have a plan, but sorry that it involves a medication that you didn't want to take. I am impressed by your sewing!
I hope that things go as well as they can over the holidays, and that that you are feeling better soon. I hope it isn't too bad getting off of the klonopin. But clozaril is sedating for some people so hopefully you won't need the klonopin as much.
Emily
My psychiatrist is hoping that I won't be that sedated on clozaril with the plan being to keep my dose low. But since I either need a low dose or a high dose with everything we'll see. It does seem that people who are bipolar need less than people who are schizophrenic from my reading online of message boards. (Less than scientific). But of course some of the goal is sedation since getting me to sleep before 4 AM would be nice. Right now I'm going to sleep at 4 and waking up for at least an hour, usually 2, around 7:30, and then sometimes up for the day another hour later and it's not enough sleep but if I take PRNs I get knocked out. I guess I'll find out soon. I know someone who just started and has been really sedated but her psychiatrist started her on about 4 times the usual starting dose so that's not helping anything.
Sewing is a stress reliever. I wish I were better at it (didn't have hand tremors) because I'd sew all the time if I could do certain things I can't now. I'm so happy with what I've gotten done this year though (assuing I finish all my goals of course). I'll miss it when I'm hospitalized.
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