New symptoms are unnerving

My muscle spasms have gotten worse. I know it could be much worse than this --like way worse -- but my muscle spasms used to be only rarely debilitating (i.e. stopping me from doing daily activities) and now they are debilitating on an almost daily basis. They are also triggering my migraines.

I take baclofen (a muscle relaxant) twice a day and flexeril (another muscle relaxant) on an as-needed basis. So about a week and a half ago, my doctor told me to start taking the flexeril three times a day.

With this new dosage, there was slightly less pain, but I was totally exhausted and super duper depressed.

Today I took myself off the flexeril to get myself back. I am going through a bit of withdrawal and the muscle spasms are worse than they were on all those pills, but I feel alive and happy in a way I haven't in over a week.

I will talk to my doctor about other ideas to treat this when she gets back from vacation in two weeks. In the meantime, I will be:

• getting a better mattress pad
• possibly dropping a class (I am so behind in school work)
• looking into the price of my university's medical center's massage person
• trying to get used to these new pain levels.

Hopefully there will be a solution, other than getting used to new pain levels.

Trying art to talk about disableism

Description: A simple drawing of a woman with visible eyes and long black hair but her mouth covered by a large band of masking tape and pen. The text at the top of the page asks: Want friends? The bottom text says: Know your place, cripple.

I do not consider myself an artistic person, but I saw this play on Friday that I found incredibly offensive and hurtful from a disability perspective. So I started drawing. Here is one of the things I came up with.

It's not a statement on my friends. But it is an attitude I see in society, very often. And sometimes I fear that if I am too "uppity", I will lose my friends. And I often feel like I need to act subservient and or apologetic if I want to get the accommodations I need for my disability. So I wanted to express my anger and my hurt.

trying my hand at poety

Trigger warning: The last two verses (after the jump) mention the death/murder of people with disabilities. It's not explicit, I think. But everyone has their own comfort levels.

I am not invisible

I am not invisible

this may be obvious as I stand here

all 5'4" of me

feisty with anger

Or meek with the submission I learned to adopt

(and relearned with my disability)

"Invisible disability"

Invisible to whom?

I am not invisible to me

My forced breathing

my eyes clenched tight in pain

The tight way I hold my body to try to stop the waves

the twitches

the sometimes spasms

the way I can't move my head much

This is not invisible to me

Tattoos and New Ideas

I have a tattoo, which I love. I got it when I was twenty to forever remind me how many wonderful people and how much love I have in my life. When I have bad days, or if life ever gets bad, it's there to remind me the many reasons I have to be joyful.

Ever since I got my first tattoo, I have wanted another. I just don't know what yet.

I've thought for awhile of getting a tattoo to claim/reclaim my body. I spend so much time fighting my health problems. The ableism in society and my mind tells me that my body is junk. (I admit I am not thrilled about the whole constant pain thing, but the disableist thought that disabled bodies are less worthy than abled bodies is prejudiced crap.)

But I realized something last night. Part of the reason I wanted that tattoo was to say, my body is beautiful despite all this. "See here, this beautiful tattoo, proving my body is beautiful." (I am talking beauty as in, conceptual body, like a person as a whole is beautiful. I don't actually have high self esteem regarding body image.)

And I don't need that. I don't need beautiful art to prove that in spite of my health, I am a good person. I am a beautiful person (I hope) not despite my disability, but including my disability. My disability is a part of me, the beautiful person that I aim to be. And I don't want a tattoo that had that internalized ableism in it, that "in spite of my disability I am a beautiful person." I want to be a beautiful person, and have my disability be part of that.

So I guess I will keep thinking of new tattoo ideas. And I don't have the money to get another tattoo right now anyway, so thinking is a good place to be.

Tamara's Opus

This was posted awhile ago on FWD: Feminists with Disabilities, but I just found it. If you haven't seen it, I suggest checking it out.

Joshua Bennett, performing "Tamara's Opus" at the White House. (Most of it is spoken English, with little bits in ASL. There are subtitles in the video and the transcript is below.)

Description: Joshua Bennet is a young black man who speaks his slam poetry with emotion in his voice and movements. Some lines (which I have italicized in the transcript) are signed as well as spoken.

Transcript after the jump

Day after a bad-ish migraine

I am so exhausted. I was going to try to be productive today. But I had a migraine yesterday. And I hit it with a lot of meds. And now, I am exhausted.

So should I have done something different? I tried to take a nap when i felt it starting, but four hours later it just started again. I took pills to knock it out.

The what ifs:

I could have taken my pills and gone to sleep. Instead I sat in the back of the a Capella concert. I have a lot of friends who are in the groups. And it's good for me mentally to get out and see people, instead of sitting in my room feeling cranky, in pain, and sorry for myself. But it might have been better for my exhaustion today. It would have been better for my pain levels if I hadn't sat in the light for an hour.

I could have cancelled on my girlfriend. She was supposed to sleep over. We still went to bed early and I was pretty much a lump who barely made conversation. But would having that bed to myself have meant more sleep and less exhaustion, less pain? I don't know.

I don't like the what ifs. They make me feel guilty. But why should I feel guilty for trying to be happy?

Ableism in the Disability Community

I just read this great piece called "Another View of Ableism" by S. E. Smith. It's a fascinating discussion of ableism in the disability community, especially in regards to ranking some disabilities as being more or less important, more or less real, etc.

"The disability rights movement, large as it is, experiences substantial internal pressure, and one of the most persistent sources of friction is the hierarchy of disability, which results in internalised ableism expressed within the disability rights movement."

Click here to read the whole article.

Update: Botox and nerve blocks

A couple weeks ago, I got botox injections (2nd time) again, followed by nerve blocks/trigger point injections (1st time) four days later. For once, I thought something might be helping! I had lower pain levels for a couple days, and even seemed to respond better to my medications. I was so excited!

But now I have had high pain for about 1.5 weeks. Well, not too too high, but higher than normal. I think because I was coming off another medications.

So now I am exhausted. And I am confused/stressed that I thought I had found something, and it might not help afterall.

I would try to have the injections done again soon, to see if it helps, but I won't be home until March. So I guess I will be waiting a bit to see if it helps next time, hopefully for longer? Argh.

Hello again

Hello,

I doubt any one reads this anymore as I disappeared for about six months. But if you do, hi!

I went to France to study for a semester. I figured I would try to just immerse myself in France: no blogging and no reading in English, especially non-fiction books. But now I am back, and thought it would be a good thing for my happiness and understand of health and disability if I started blogging again.

So: blogging, take 2.

~Assiya