Unsolicited Advice

As most of you probably know, people who are disabled and/or chronically ill often get unsolicited advice. (And sometimes very odd unsolicited advice.)

(For example, I once had a stranger on the train tell me that my migraine would go away if I just pinched my nose the right way. (Never mind the fact that, at that point, my migraine was 2.5 years old and he didn't know anything about my health history). When that didn't work, he wanted to pinch my nose for me. And was offended when I didn't let him...)

But continuing past that tangent... Today I couldn't be in class because I was in the second day of a bad migraine. So I emailed my professors to let them know. And one professor responded "Have you tried homeopathic remedies." and signed it with her initials.

Excuse me?

She knows nothing about my health or health history. She does know my migraines are so bad I ended up in the ER recently and she most likely knows I have a doctor that I am working with. She also knows I have (medically-vouched-for) academic accommodations So why does she think she has ideas about my migraines I have never thought of?

That's one of my big problems with these suggestions: if you've heard of it , I probably have too. (Especially because usually people making these suggestions don't have these health problems or any health-related degrees.) And it's insulting that you think you know my body better than I or my doctor do. Also, these suggestions often are attached to an idea that my health would get better if I just tried a little harder. Finally, I'm glad that other people can ignore all the other complex factors that go into making my health decisions (money, side effects, time management, money), but I can't.

Tired

So apparently my body has decided I need sleep. Which makes sense -- it's dealt with a lot recently. My migraines got progressively worse for five weeks. Then I ended up in the ER and they added an IV of morphine and something else to my already very drugged body. Then I got sick. Just a cold, but they make my migraines worse and more drugs.

My friend today said, "well scientists say you need [x] amount of sleep..." and I stopped her. That may be what healthy bodies need, but that's not me.

I'm working on learning that my body needs whatever it damn well needs. And apparently right now it needs 12 hours of sleep a night. If only I didn't have so many final papers to write...

Link Recommendation

abby jean, at Feminist with Disabilities, has a post called "This Terrifies Me" that I recommend. It's about changes in immigration laws in the U.S. and links between discrimination against immigrants and discrimination against people with disabilities.

Click here to read it.

Feeling good!

I'm feeling good today! Mostly back to a functional human being! (knock on wood) Hip hip hooray!

Happy-making Things

So it's been a bit of a rough week, so here's some things that are making me happier.

• Cuddling with my girlfriend. I felt so gross before she came over. But after two hours of cuddling, I feel almost like normal.
• She called me her girlfriend for the first time this week and told her mom about us.
  
• The new "Glee" is on. As much as its disability fails anger me (and some other fails), it can really amuse me and take my mind off other things.
• My professors have been great about me needing extra time and being very kind to me.
  

ChronicBabe Blog Carnival!!

Hey all you wonderful readers,

If you haven't had a chance, I suggest you check out the first officially-hosted-by-ChronicBabe.com ChronicBabe Carnival.

This carnival's theme was "I Can Bring Home the Bacon: Thoughts on Work and Chronic Illness."

These babes, (employed, unemployed, and in school) had some awesome things to say and you can find it if you click here.

Exhausted

I am so tired. I'm tired from how much my body/migraines flared and the drugs I took for it and the IVs they put in my body to help the pain and nausea. I wish it didn't take so long for IV drugs to get out and my body to recover. I made it through 20 minutes of class this morning before I had to leave. I feel like a wet noodle.
On the plus side, I feel a little better every day, which is good. And I'm recovering (or at least getting back to my normal state). And the pain is low (for me).

Emergency room

This weekend I ended up in the ER for a bad migraine that wouldn't respond ( I will spare you the details). All in all, though, I couldn't have asked for a better ER experience. Not saying it was fun. And IV drugs take forever for the side effects to go away. But the nurses were super nice. They listened to me. And everyone was just really kind and caring! Score one for US health care experience for me.

Worried about work

One of my big worries is what I am going to do with my life once I finish university. I have the normal university student worries, about finding a job and being happy, but I am also worried about what my health will mean for work. Right now I only work a couple hours a week and then a summer job. Right now I am very lucky to be on my father's health insurance and to have my family cover my health care. But I don't know what the future holds.

Even if I find a job, I am worried about whether it will include enough insurance and enough money to afford my medication and health care. Right now, I take a minimum of three medications and one vitamin a day. And it is rare that I only take these. I have a lot of "as needed" medications as well. I need these to keep my migraines enough in control that I can get out of bed, turn on the light, go to classes, etc. I doubt I could hold down a job without my medications.

Even with all these medications, my migraines still impair my daily life. I am frequently unable to drive, often miss class, sometimes get basically stuck in bed for two or three days, etc. The trouble with driving may make it hard to get to jobs, but that's not my main worry. Why hire me when there are other people searching for jobs who probably wouldn't miss so much work? And who probably don't have as many days where their brains have trouble functioning? I work extra hard to make up for the time I "miss" because of my health, I'm smart, and I'm passionate, but I'm worried that is not what employers will see. And if I do get hired, would I be able to keep the job?

I have a still have a little while before I try to enter the full-time work world, but how that world and my health will interact is something that keeps me up at night.

Thoughts about "No Pity"

This week, I read No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro. When I finished it, I felt so incredibly stressed and frustrated, but also empowered.

It hurt to see how little our society and government think of people with disablities . In part, because if I'm disabled, then it's also what they think of me. (Obviously society approaches different PWD differently, but I am talking about on a general level, how society approaches disability and PWD.)

I have a lot of feelings about this book (and would highly recommend reading it), but what this post is about is the feelings this book brought up about my own identity. No Pity made it even more clear how important it is that people claim a disabled identity and that the disability civil rights movement is disability-led. The more people who are able to break the silence of the stigma and claim the label of disability for themselves, the stronger the disabled civil rights movement will be. And I want to be part of that good fight.

But the book also brings up my uneasiness about claiming a disabled identity. Because if I am disabled, I am only mildly disabled. Who am I to claim the label or to complain when people are institutionalized and denied even incredibly basic rights? There are so many other people facing so many more difficult things.

In my brain, I know that's silly--putting things on a scale of who is disabled enough. But in my heart, I still feel guilty.

Disabled or not, I want to be part of this fight for equality. And I will.