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just hanging on

Posted Jul 13 2014 12:00am
I spoke at the NAMI meeting the other night, and it went pretty well. I really only got a chance to tell the first part of my story but I had a lot of people give me positive feedback afterwards.

The thing is, I am not doing so well even though I can hold it together to do something like speak at a NAMI meeting. I've been missing a day of work every week for three weeks. I can't get out of bed because I'm so exhausted. I'm taking so much medication - too much. It doesn't always work to make me sleep anyway. I want to talk to my doctor when I see him this week about getting off some of the meds.

I frankly hate Clozaril. It has led to my mom  constantly telling me I seemed drugged and like I don't care about my appearance. It has led people on the phone at work accuse me of being drunk because my speech was slurred. It makes me drool, which is disgusting. It doesn't get rid of all the auditory hallucinations, but it does cut down on them. That's the only good thing I can say about it.

I also found out that Clozaril can cause Lupus, and guess what? I have Lupus. I had it before taking this drug though. So I have an inkling that being on this drug is making the Lupus worse. Would that not make logical sense? Why should I keep taking this medication?

I forgot to get a new prescription for Clozaril blood work to be done. I was supposed to do that last week. And since I forgot, I'll be running out of Clozaril because they won't refill it without the bloodwork. I'm thinking perhaps this is a good thing.

I'm feeling at times like I should go back to the hospital I was in last year and just give up on all of this  trying to function like a "normal" person. I can't seem to do this normalcy thing too well. I really need help cleaning my apartment and I have nobody who will do that. It's not that I am just lazy, I have the negative symptoms of psychosis, like apathy and withdrawal, and it becomes an overwhelming task to consider cleaning. I explained this to my newest case manager and she was going to contact someone who might be willing to clean for me for 10 dollars an hour, like my friend used to do, but then she never got back to me about it.

I hate having no internet or TV at home. I could live without the TV, but without the internet it's such a lonely, boring situation to be in. So for that reason, I've been spending a lot of time at McDonald's (like right now) because they have free WiFi here.

If you know of any affordable (cheap) internet service providers, please let me know. Brighthouse wants $450 from me which I do not have so that is why it was cut off about seven weeks ago. I need to find some other way of accessing the internet from home.

In other news, and this is good news, the co-author and illustrator of my book, Episodes of Schizophrenia has created this excellent website about it: www.episodesofschizophrenia.com

Please check it out! Thanks, Jessica Leach.
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