Saturday, December 26, 2009

Gratefulness and What I am Grateful For

I very much dislike the "sick or disabled people overcoming barriers and being happier because of what they have overcome" cliche. Partially because it seems to include the idea I should be grateful for my chronic pain. And sometimes, I just want to be cranky and admit that my health problems really suck. That being said... there are things I am grateful for that come from my health.

My health is helping me learn what's truly important. Because when you are worried about whether you end up in the ER, whether you will be able to make it out of the room that day, whether you will be able to hold down a job once you get out of college, etc -- then the things so many college students seem to be worry about just seem unimportant. Life is put more in perspective. I'm not saying I'm perfect or that I don't get upset about little things, but I don't care so much about people's judgments. Think what you want about my outfit or my spaciness -- I'm working hard just to be here and I have more important things to worry about. Through my health, I have learned a lot about what is truly important to me, what I want to prioritize in my life, and who I want to be for myself and my friends.

I'm not saying my health gave these things to me. I worked hard for them. I cried for them, ended up in the ER for them, laughed for them. My friends worked hard with me for them. I am still working hard to learn how to cope with my health and be happy and be a good person and a good friend. And I still have a long ways to go. But my health gave me a vehicle to learn, and for that I am thankful. I have never been happier or more proud of who I am--and part of that is what I have learned with my health.

Thursday, December 24, 2009

For Christmas, I'd like world peace and Botox please?

I've been on 20 or more migraine medications, tried biofeedback, acupuncture, nutritionist, nerve blocks, physical therapy, etc. My doctor is now going to start the process of trying to get me approved for Botox for my migraines. If I'm not specially approved, I definitely can't afford it. I'm trying not to get my hopes too high, because it's not FDA approved for migraines or normally approved by my insurance company. And, even if it does get approved by my insurance company (which does sometimes happen apparently) it might not work. And even if it does get approved and works, it lasts 3-6 months, and then I would need another round, and more approvals.....

But still. I really want to try. So if you don't mind, send good wishes/hopes/prayers my way?

Merry Christmas

Merry Christmas to everyone who celebrates it. May you feel as well as possible and may it be as enjoyable and low-stress as possible.

Sunday, December 20, 2009

7 Things I am Happy About Today

  1. It's nice to be home for a short bit to see my family, friends, dog, etc.
  2. I get to see M tomorrow.
  3. I have a bunch of questions about health and treatment options which I will soon get to ask -- two neurologists while I'm home. Plus, it had looked like the neurology consult wasn't going to happen until February, but December worked out!
  4. We have beautiful snow!
  5. I have wonderful friends.
  6. This week's Dollhouse was fabulous.
  7. My parents put beautiful tulips in my room to welcome me home.

Sunday, December 13, 2009

Am I Disabled? (Part 1)

It really depends on who you ask. According to the government? The laws aren't written especially clearly, but I seem to fit their definition sometimes. My school doesn't classify people, but I get my academic accommodations from the school disability specialist. My friend J jokes that when we go to the cafeteria we should get our food for free because "you're disabled." My best friend has been kind of avoiding talking about it, but she does know that I fit some definitions. She seems to agree with me -- in terms of identity, that's something I should get to decide.

So what do I think? I'm not entirely sure. I don't like the word disability. I feel guilty taking the label, because there are a lot of people with much more serious things going on. But then there are the weeks my health is extra bad and I'm stuck in my dark silent room avoiding stimuli for even more time than I'm used to.... Or the joking conversations where we try to find things that don't cause me pain and have a lot of trouble coming up with something..... Or the times I realize to what extent I plan everything I do around my body....

I know that when I read about the social model of disability, I see how society is set up to view me and treat me as lesser because of my health. And I see a place for myself and want a place in the disability rights movement. So does that make me disabled? I'm still on my way to deciding, and I have a right to change my mind. For now, I'm just saying, "according to some definitions" and I'm going to keep reading, writing, and talking about what disability and disableism means in this society and in my life.

Saturday, December 12, 2009

More things I wish I could tell people

Don't tell me you think you would commit suicide if you were me. That's not actually a compliment or funny--far from it.

Thursday, December 10, 2009

7 Things I am Happy About Today

  1. I just watched one of my favorite episodes of Buffy, and I am going to watch another as I go to sleep.
  2. One of my best friends is coming home tomorrow, and I get to live with her next semester.
  3. I have the room to myself right now--no roommate or her boyfriend.
  4. I feel pretty happy.
  5. Eight days until I go home for winter break.
  6. I went on an outing and hung out with friends tonight.
  7. My heating pad feels wonderful!

Wednesday, December 9, 2009

Things I wish I could tell people, i.e. The Reading Guide I sometimes wish I came with

Sorry, this is kind of long but I've been getting frustrated with friends and acquaintances saying and doing hurtful things. Also, I haven't really edited this, so this might be different when I'm less frustrated

Don’t look at me with terror in your eyes. I am not a monster or a tragedy.

Don’t say “I know how you feel” unless you actually do. If you suffer from chronic pain, you might. If you use a simile or metaphor, you might. (After all, everyone experiences life differently.) But your small headache is not the same as the migraine that narcotics barely touch.

Similarly, don’t treat me like a child, even when I am in a lot of pain. I may not be able to use all my words or cognitive skills when my health is bad, but I am still an adult.

Don't assume I will be "cured." Migraines have no cure, although they can sometimes be treated.

I may be in constant pain for the rest of my life. This does not make my life worthless or a tragedy. Don't think that I am being dramatic if I tell you this -- it is the truth.

Do tell me about your life. I want to hear about what’s going on, what’s good, what’s bad. Even if I’m in pain.

Think before you make a joke. And remember, many of the things you say “as a joke” are things that people have actually said to me. If I think you are making fun of me or if there is ableism in what you say or in your thoughts, it’s not funny, not at all.

30 Things About My Illness - Meme for Invisible Illness Week

(Written September 2, 2009)
1. The illness I live with is: chronic daily headache/migraine, chronic back/neck/shoulder pain
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: 2002
4. The biggest adjustment I’ve had to make is :asking for help and admitting that I can't do everything.
5. Most people assume: It varies. That I'm not actually in as much pain as I am. That they should "protect" me, and that they have some right to treat me like a child. That I am perfectly healthy.
6. The hardest part about mornings are: Waking up and remembering and am still in pain.
7. My favorite medical TV show is: House MD
8. A gadget I couldn’t live without is: My computer
9. The hardest part about nights are: On average, the nights when I remember I have difficulty relaxing in the same manner most college students do (i.e. partying, hanging out with friends, etc.). Not only does it make me lonely, it reminds me that things that are easy for them or things they don't even have to think about, are difficult for me.