Tag Archives: medications

Lab Results

I finally heard back from my gastroenterologist’s office this afternoon–while I’m at headquarters in Boston, of course.  Apparently I’m anemic, and my white blood cell count is pretty low.  That could explain a lot of the fatigue and weakness symptoms I’ve been having.  My doc’s putting me on iron.  I’d been on it before, but he took me off it because my levels were fine and he was afraid it was messing with my digestive system.  But I’m guessing with the bleeding I’ve been having, especially without the iron supplements, made me anemic again.

The WBC count is more worrying.  It’s almost certainly because of the 6-MP.  I have a love/hate relationship with this drug–it’s caused me all kinds of icky side effects, but it’s also given me more control of the UC than any other drug.  And now I may have to go off it.  He’s not going to take me off it just yet; he wants to get repeat labs in two weeks and go from there.  I wasn’t having as many problems on 75 mg–it wasn’t until it got upped to 100 mg that I got really ill–so we’re both hoping that means going back down will solve the problem.  But if it’s caused bone marrow toxicity, I may have to go off it totally.

I’m SO FRUSTRATED.  The only drug that’s kept my immune system from ripping holes in my intestines might now be killing my bone marrow.  If I go off it, I’ll probably get sicker with the UC, but obviously killing my bone marrow isn’t an acceptable scenario either.  All I want is a drug that controls my illness without killing me.  WHYYYYYY does that have to be so far out of reach?

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Magna Voce

Yesterday I went to a workshop presented by Chaya Grossberg about coming off psych meds.  It was awesome.

 

At first it was intimidating.  I went with the nurse from my treatment team, but I didn’t know anyone else there.  She wanted us to break into pairs with people we didn’t know and talk about our purpose in life, and my anxiety shot up.  Then one woman said she wasn’t comfortable with that.  It never even occurred to me that I could say that.  Years of abuse taught me to believe I couldn’t say no, so I was grateful to the woman who spoke up because she reminded me that I have a voice too.

 

I think what I came away with most was the importance of having and using a voice.  That’s been a struggle for me for a long time.  Most people who know me now would never guess that–I’m a vocal political organizer, and I often say I have strong opinions on almost everything.  But the secret struggle for me is being able to have a voice just for myself.  It’s much easier to speak up when I see things wrong with big systems, things that are hurting other people, things that could be fixed or improved to give more benefit for more people.  But it’s incredibly hard to speak up when it’s for only my own benefit.  I believe I don’t deserve that, and there’s a fear in some child parts that it will lead to abuse and punishment.

 

About halfway through, she asked if anyone who’d come off psych meds or was in the process of coming off them  wanted to share their story.  The sense of fear and intimidation I’d felt at first had disappeared, and I volunteered.  I don’t know why; it was just this spur-of-the-moment thing.

 

It was the first time I’d ever talked about it publicly.  (Okay, there were all of about 8 people in the room, but I think it still qualifies as public.)  I’ve talked about it in therapy and with friends, and I’ve journaled and blogged about it, but I’ve never spoken publicly, face-to-face about it.  I’d always thought it would be scary–that people would think I was crazy or whiny or just making it up–but it wasn’t, at all.  My experience of mainstream psychiatry has been traumatic, both in and of itself and in relation to my long history of trauma, and I’ve always been afraid to say that.  There’s fear of rejection but also fear of retaliation.  As a child, I believed (and was taught) that my abusive parents knew everything I did and would punish me even if they didn’t see me do a wrong thing, and mainstream psychiatry treated me in much the same way.  I was taught that I was powerless, and if I tried to take back even a small measure of power or control of my life, I was punished.  There’s still this fear sometimes that if I criticize them, they’ll magically know and punish me again.  I thought all that stuff would come up and it would be scary.

 

But it wasn’t.

 

Instead, I felt not only heard but wanted.

 

I almost always feel like what I have to say is stupid, useless, whiny, needy, boring, or whatever other negative adjectives.  I often think that people just put up with me because they’re too polite to tell me to shut up.  Sometimes I obsess for days or weeks about something I wish I hadn’t said, even though I know the other person probably didn’t think anything of it.

 

When I could write, I could have a voice.  I was good at that, and I got better.  I did an MFA-level creative writing program in high school; I won contests; I published.  There was concrete proof that people liked what I said and the way I said it.  And then I just couldn’t write–not since I was 19.  It was devastating because that was the only voice I had then.  I’ve tried so many times to write again, but everything comes out dead.  I can count on one hand the number of good pieces I’ve produced in the last 8 years.

 

I still wish I could write, but I’m learning to have a voice without poetry or fiction.  In a way, I think maybe I need to tell MY story before I can write other stories.  My whole story, not just coming off psych meds.  It’s just this hunch I have, and I can’t explain why or how I know.  And telling my story scares the shit out of me.  There’s a lot I don’t want to remember,  but maybe that’s why I can’t be creative.  But I think telling that part of my story at this workshop was really good for me because I did it in a setting where I felt held.

 

While I was telling my story, what stood out to me was my need for autonomy within support.  I never had that as a child–abuse is all about removing autonomy from the victim.  Then mainstream psychiatric treatment enforced that through so many coercive acts.  I was hospitalized against my will, strip searched, told what was wrong with me rather than asked, medicated against my will, involuntarily committed.  I had to write my junior thesis–about red and black color symbolism, reversed yin and yang, gender roles, and androgyny in The Scarlet Letter—in crayon because I wasn’t even allowed to have a pen.  I was turned into something less than a person and pressured to be grateful for it because it was for my own good.

 

“Everybody wants to tell you how to recover,” I said.  “Take this drug, eat this food, do this kind of therapy.  It makes me crazy.  You don’t know me!”  For so long, I tried to be a “good patient” and did what I was told.  Things got worse instead of better.  Now I have my own opinions, and it feels so much better.  I don’t always know exactly what I need, but I usually figure it out.  I know me, or I’m in the process of knowing me.

 

Now I have a team that actively encourages me to figure out what I need.  They give suggestions, but the choice is always mine.  I’ve done things in ways no other clients in the program have done before, like going to Sheppard Pratt and then coming back, and they’ve been incredibly supportive and committed to making things work for me rather than by some dogmatic reliance on formulae.  Now that I’ve experienced it, it seems so obvious I don’t know why all treatment providers aren’t like that.  I wish everybody had access to treatment teams like mine, but for most of my life, I wouldn’t even have known it was possible.  When the only treatment you’ve gotten is coercive and retraumatizing, you can’t even form the idea of another approach.

 

It was such a good experience to go to the workshop.  I feel so much more connected than I had been feeling.  The internet is great, and I really value the people I’ve met and shared experiences with that way, but there’s a different kind of benefit to experiencing that in person.  I wish there were more opportunities for me to do that.

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