For a Fairer Today

New symptoms are unnerving

2011-02-16T18:09:00.000-08:00

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

2011-02-14T07:57:00.000-08:00

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

2011-02-13T07:00:00.000-08:00

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

It used to be that

the idea of disability didn't even cross my mind

Then

"my laziness"

"my weakness"

"my failures"

Were not invisible to me

Disableism was a word I might have heard one

let alone see it happening to me

(but hey,

what can I say -- even microsoft word doesn't think it's a word)

And then I tripped into disability theory

stumbled

a lucky stumble

It was clumsy

It was confusing

But it was a possible light

A possible community

A possible pride

(Although I was no where ready to even consider that yet)

"Someone, somewhere might

possibly

think i am.... disabled" I realized

Interesting

AMAZING

I kept reading

And suddenly I was angry

It made more and more sense

So very

fucking

angry

Because I'm forgotten

I'm 'invisible"

But it's not just me

It's like that "joke"

Which isn't a joke because it happens all the time

"I don't need to build a ramp for my store

there are no wheelchair users who ever come here"

Well how the fuck did you expect them to get in?!

I stood memorial for our dead last month

My dead

My community's dead

But no one had trained me how to mourn this

If we just forget, no one mourns

No one knows

know one knows how to mourn

Unsure what to do

What's the proper thing to do

to say

when "my" society hates people with disabilities so much that they are murdered

(c) Copyright (Also, this isn't a great poem, why would you steal it anyway?)

Tattoos and New Ideas

2011-02-09T20:44:00.000-08:00

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

2011-02-06T18:14:00.000-08:00

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

Transcript:

Tamara has never listened to hip-hop.
Never danced to the rhythm of raindrops  or fallen asleep to a chorus of chirping crickets
she has been deaf
for as long as I have been alive
and ever since the day I first turned five
My father said
Joshua
Nothing is wrong with Tamara 
God just makes some people different. 
And at that moment 
those nine letters felt like hammers 
swung gracefully by unholy hands 
to shatter my stained-glass innocence 
into shards 
that could never 
be pieced back together 
or do anything more 
than sever the ties
between my sister and I 
I waited, 
was patient numberless years 
anticipating the second  
her ears would open like lotuses 
and allow my sunlight sentences to seep 
into her insides
make her remember 
all those conversations 
we must have had in Heaven 
back when God handpicked us 
to be sibling souls 
centuries ago 
I still remember, her 20th birthday. 
Readily recall my awestruck eleven-year old eyes 
as I watched 
deaf men and women of all ages 
dance in unison to the vibrations 
of speakers booming so loud 
that I imagined angels chastising us 
for disturbing their worship 
with such beautiful blasphemy 
until you have seen 
a deaf girl dance
you know nothing of passion. 
There was a barricade between us 
that I never took the time to destroy 
never for even a moment 
thought to pick up a book and look up 
the sign for sister 
for family 
for goodbye, I will see you again some day 
remember the face of your little brother. 
It is only now I see 
that I was never willing 
to put in the extra effort to love her properly 
So as the only person in my family 
who is not fluent in sign language 
I have decided to take this time 
to apologize 
Tamara, I am sorry, for my silence.
but true love
knows no frequency. 
so I will use these hands 
to speak volumes 
that could never be contained 
within the boundaries of sound waves. 
I will shout at the top of my fingertips 
until my digits dance 
and relay my mental messages 
directly to your soul 
I know, that there is no poem 
that can make up for all the time we have lost 
but please, if you can
just listen.

Transcript thanks to The Huffington Post. You can find the article by clicking here.

Day after a bad-ish migraine

2011-02-06T17:11:00.000-08:00

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

2011-02-04T11:19:00.000-08:00

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

2011-02-02T17:41:00.000-08:00

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

2011-02-02T08:17:00.000-08:00

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

Botox

2010-08-14T09:46:00.000-07:00

I got my botox injections yesterday around three! Now I'm waiting to see if they work. Right now I'm mostly just sore from the injections they did in my back/shoulders. (I also got them along my hairline on my face, a bit above my nose, and in my hair a bit above my neck.)

Anyone know how long I might wait before this might kick in??

Good Stuff

2010-07-20T14:34:00.000-07:00

So life's tough right now. My health is acting up while I'm supposed to be juggling an internship and an independent study. I'm living at home, and my mother at least partially blames me for my health problems. And if I can't handle an internship, I'm not sure how I'm supposed to find a job when I graduate in a year and move out of my parents house.

So, it's time to focus on the good stuff:

*I have fabulous friends
*I have a wonderful girlfriend. She's in a different state right now, but I do get to see her every week or two and talk to her almost every day.
*In a month and a half, I'm going to study abroad.

Summer Internship: Ouch

2010-07-06T11:53:00.001-07:00

I am not allowed to bring pills inside my summer internship, or even leave them in the car. I understand that the rule makes sense (I work with a lot of drug abusers and recovering addicts) but it causes big problems for me. This summer has been quite painful in fact.

It's hard to predict in the morning whether I'm truly going to need my medication. But if I don't take them, then there are seven hours of florescent lights, sometimes a hot room, and loud noises.

Migraine medications work best if taken at the beginning of a migraine. However, I have a constant headache so that can be hard to catch. But if I take my medications too often, then they can cause rebound headaches, even give me heart problems.

The additional problem is that I currently need to drive to my internship. However, several of my medications make me slightly dizzy and then I can't drive. So I have less access to my medications and fewer medications to choose from.

Today I misjudged whether I was going to need a migraine. And it struck fast and I had to leave several hours early.

I wish I could figure this out. I wish I didn't have to disappoint people and leave. I wish I didn't have to rule this out as a possible career because my body can't take it. It's so frustrating!

Any ideas?

Why?

2010-06-24T19:40:00.000-07:00

Why on earth would someone want to hire me (when I graduate in a year) when my migraines are so disabling?

Speaking of which, why are my migraines currently extra disabling?

So. Damn. Tired.

Botox!

2010-06-21T15:52:00.000-07:00

Today I learned that I have been approved to try botox for my migraines. I will be getting the injections in August, perhaps even sooner!

Pain and possible break

2010-06-20T15:29:00.001-07:00

Hey all,
Sorry. I've been away for awhile. I'm not sure exactly why. I may still be away for awhile. It's been very busy, what with a summer internship and summer class and my migraines being worse.
I'm worried. I need to get my migraines under control so I can pass my senior capstone class this summer.
~Assiya

Love your body?

2010-05-09T16:05:00.000-07:00

In October, Feminists with Disabilities did a post (which I highly suggest and which you can find here) for Love Your Body Day about why some of the bloggers there love their bodies. It was one of my favorite posts from them and it got me thinking.... Almost seven months later, here's my (first) response/thoughts.

I love my body because, well... I don't. I love some parts of it, but more often I feel anger and hate towards my body.

But in my fights with my body, I've picked up some new skills and new perspectives. I won't be silent about how hard it's been, and the people who have helped and hurt me on the way there, but I love some of the things I have become and the people who have joined my life with this fight.

I love my tattoos and piercings and the way these things allow me to take ownership of my body.

I love the way my body crack, snapple, pops, and the way it feels after a good stretch.

I love the way my body takes me places (usually) and I have a begrudging respect for the way it grounds me (at least sometimes).

I love my body for being an entry way into disability rights culture and theory, and for the way it feels in the water.

I love my body for getting used to pain and for being so resiliant no matter what I throw at it.

Again, I suggest you check out Feminists with Disabilities' originial Love Your Body Day post found here.

Gives me Hope, part four of many

2010-05-02T17:45:00.000-07:00

Somethings that give me hope this week:

My best friend. For many reasons. But in terms of today, because she told me she is here for me, whenever (something she has proved over and over). Now if only she wasn't graduating a year earlier than me....
Blogging Against Disablism Day (BADD), which was yesterday. The posts are wonderful!
My sociology professor, who seems to think I'm going to end up as a professor. I'm not always the nicest person to myself, and he compliments me at least once a week and makes me feel better and more hopeful about myself and life.
My other fabulous friends. BADD was yesterday and the posts were reminding me how often friends run when chronic illness looms into the picture. Not everyone has been perfect, but I have some pretty fabulous people in my life.
Good music and good TV. When I'm stressed or upset (like recently), these things can help me feel just a little bit better.
Activism poetry, especially Adrienne Rich. Wow! Some people write in a way that make me feel healed, angry, empowered, and ready to change the world--all at the same time.
People who care enough to do the right thing if it's at all possible. This seems sadly lacking sometimes -- I'm a little tired of excuses about why people fulfill their responsibilities -- and its easy for me to focus on the people who had a responsibility (or should have had a responsibility) and who did nothing because they didn't care enough. Here's a celebration of the people who do care enough to do the right thing if they can.

What gives you hope?

BADD: Submissiveness

2010-05-01T13:13:00.001-07:00

This post is part of the Blogging against Disablism Day blogswarm that Diary of a Goldfish is hosting (which can be found here).

In studying the sociology of disability, I came across the quote by sociologist Elliot Freidson from his book Profession of Medicine.

[For people with disabilities or chronic illness], acceptance by others hinges on maintaining properly undisturbed social relation with them... Legitimacy is conditional on limiting demands for privileges to what others consider appropriate. (p. 235)

In other words, abled people (TABs) will help people with disabilities (PWD) as long as the TAB thinks the PWD knows his/her/ou's place and is not asking for too much.

When I read this, my brain went, "Yes! That's part of my life! That's why I am studying sociology of disability." And it helped me understand part of why I am afraid.

I can only speak for myself, but I see this attitude all the time. 'We will help you because you are disabled, but you better not get uppity about it.' And this idea keeps me submissive sometimes. Because I need help sometimes. And it scares me what would happen if I was "too much" and offended someone. Because then who would take me to the ER? Or get me food when I can't do it myself? Would my professor give me a worse grade? Would my doctor stop treating me? Or...? It has happened to me and many other people, the consequences of "asking for too much," asking to be too much.

But what really upsets me is when this fear becomes part of my personal life. I have many wonderful people in my life. And most of them would never do this to me--withhold care because I pushed the limits set for me as a disabled person. But at the same time, they grew up in this society, grew up learning the same disablism I did. So a little part of me is scared that maybe they would. Is scared of what would happen if one day I was just a little too much. And I wonder: what would a little bit too much be for my friends?

It makes me angry that I feel the need to be submissive to doctors and professors and other people when it comes to my disability.

But what really makes me angry is that disablism makes just a little part of me afraid of my friends. That's wrong.

Unsolicited Advice

2010-04-29T10:31:00.000-07:00

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.

On rare occasions, people suggest things in a way I am thankful for. Often by asking if I wouldn't mind hearing a suggestion. And by having actual evidence of some sort to back it up (personal experience or actual research). (A better knowledge of my health history is also appreciated before making any suggestions.) Or maybe they politely say that they know I have probably already heard of it, but in case I hadn't....

There's also an awkward power dynamic going on when it's a professor. As much as I would like to just ignore her email, or maybe even explain to her why this email is not appreciated, I didn't. Because she's my professor. And she will be grading my final exam in two weeks. And giving me a final grade. And that gives her very real power over me and my future. So I replied. But I refuse to thank her for her suggestion (even if it came from a mostly good place).

It might be well meaning this time, but I'm tired of all the societal ableism that is often attached to these suggestions.

Tired

2010-04-27T18:07:00.000-07:00

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

2010-04-19T13:45:00.000-07:00

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!

2010-04-14T06:28:00.000-07:00

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

Happy-making Things

2010-04-13T19:12:00.000-07:00

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!!

2010-04-13T19:07:00.000-07:00

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

2010-04-13T12:36:00.000-07:00

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

2010-04-12T05:00:00.000-07:00

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

2010-04-04T17:37:00.000-07:00

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"

2010-04-03T14:39:00.001-07:00

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.

Closed Capitioning

2010-03-31T13:43:00.000-07:00

There's a lot of talk about closed captioning and how it benefits people who are deaf or hard of hearing. Captioning television, movies, online videos, etc. are good for these reasons, but they benefit other people too.

I love closed captioning. I love when television has them, love that most dvds have them, and really love that Hulu.com has captions!

I often play my videos or television slightly (or very) quietly due to my constant migraine. I have a constant (varying) sound sensitivity, and even on days when this is low, I don't like the surprising pain that can come with surprising loud noises (such as explosions or yelling) that often occur unexpectedly.

But playing my videos at the volume can mean missing some parts. So what's a women to do when her tv or computer is just a little too low to hear the quieter dialogue? Use the captions of course! (If they are there...)

Here's hoping YouTube's new efforts will work out, Netflix will get their act together and add closed captioning to their online videos, and all videos and programs will have captions.

Chronic Babe Carnival

2010-03-29T10:30:00.000-07:00

The second Chronic Babe Carnival went up last week at Annie's blog. The question was about your favorite coping mechanisms, so there's a lot of really cool ideas. So if you haven't see it yet, this is my late suggestion that you check it you :)

You can find it by clicking here.

Waiting...?

2010-03-28T21:49:00.000-07:00

Last week was not a good pain week... my migraines exploded. I think it's the birth control but I am not sure. So I have to wait it out and see, because I don't have a lot of treatment options left. I can't just throw this idea out without being quite sure it is a reaction to the birth control.

Which basically means, I think I am waiting for my pain levels to explode again. It's less than fun.

Anyone else want to whinge, rant, etc about your life?

Gives me Hope, pt. three of many

2010-03-23T18:36:00.000-07:00

*A health care bill passed.
*A president who seems to have decided that the health care bill was the most important thing he could do as president of the United States.
*The woman I just started seeing, who, among other things, is great about making cuddling work despite the challenges of my pain.
*My fabulous friends.
*Medications that do, at least sometimes, help.

What gives you hope?

Dream

2010-03-22T17:27:00.000-07:00

I had a dream two nights ago that I had a terrible migraine and I was scared it would never go away. I'm used to bad migraines (when I'm awake) and the illogical (for me) fear that it will never get better. And sometimes my migraines wake me up in the middle of the night. But I have never had a migraine in my dreams before....

It's been two days, but its still creeping me out. I wish I knew why my body reacted this way. I had a migraine when I went to sleep, so I would have understood if my migraine had woken up in the middle of the night. But it seems wrong to feel pain in my sleep, or at least remember it. Knock on wood it doesn't happen again..

Studying disability: my coping skill

2010-03-21T21:06:00.000-07:00

Over the last several years, I have picked up a lot of coping skills: amazing friends, meditation, ways of distracting myself, etc. But one of the new ways I am learning to cope with my chronic health problems is by studying the sociology of disability.

When I first started getting migraines, it never crossed my mind to think about them as a disability. But as I started looking for resources on how to cope, I started learning about disability. And the more I learned, the more I wanted to learn.

So how the hell is that a coping skill? Because it has changed how I feel about my pain and my life. There is a lot of prejudice and silence regarding disability and chronic illness. And, like most people in this society, I had internalized these things.

As I have been reading, I keep finding sentences that make me feel less alone. That described exactly what I have been going through. And I’m realizing something:

Society is full of disableism. And it affects me every day. The more I read, the more I can see it. The more I can understand the fabric of society, and the disableism and health-biases that are part of this fabric.

And as I understand that, I am gaining confidence. I am breaking the silence. I am envisioning the world and life I want to have, one with less disableism, and I am working towards it.

Now I’m not suggesting this is something that would work for everyone. I am a major sociology dork, and that is not everyone’s jam. But reading about disability and disableism has been incredibly empowering, and that makes it easier to navigate my migraine-filled life.

Some goals

2010-03-21T11:18:00.000-07:00

Work on positive ways of dealing with my anger.
Procrastinate less and fill the time that I will gain with sleep and more important things and people.
Start blogging again.
Meditate regularly (see number 1).
Make fewer violent comments and jokes.
Keep in better contact with the friends and family I don't see on a daily basis.
Get back into scrapbooking.
Be more positive.

"migraines aren't disabling"

2010-03-09T01:30:00.000-08:00

I was reading something online about migraines a couple weeks ago and I read in the comments people saying things like, "migraines aren't disabling." In the past, that would make me angry, but these anonymous people just made me laugh. I'm sorry, but have you ever had a migraine? Have you ever had one for 3.5 years? Because I have, and believe me, I've given up a lot. Every portion of my day is changed because everything I do I have to consider what the effects will be on my health and how that will affect the rest of my day, any plans I may have, and my future. For example, why do I wear my hair down? Well, it hurts too much to put it up most days. And why am I wearing so many layers? Well, my meds make me cold, my bra hurts my back in ways that make my migraines worse so I'm hiding what I'm not wearing, and, frankly, I may just be too tired and in too much pain to care what other people think.

Ok, so I guess those comments did get to me.... It's not so much I care what random people say online, but I know it's what society as a whole tends to believe. I am tired of being judged, tired of justifying myself to others, and tired of justifying myself to myself.

Yes, in fact, migraines are disabling. Partially because of people with attitudes like that.

Chronic carnival

2010-03-08T19:43:00.001-08:00

As most of you know, I am part of the Chronic Babe forum. A bunch of us decided to start a carnival, and fabulous Kathy has kindly hosted the first one. If you haven't already checked it out, I suggest clicking on this link right here :)

Time

2010-03-03T01:00:00.000-08:00

Sometimes when people ask me what activities I do, I jokingly include my health as an activity. I either say, "I get sick a lot" or "and I have chronic health problems" or something like that. Often it's kind of awkward and I make a mental note to never say that again (until the next time of course). But here's the thing: being ill, or disabled, or whatever label you want to afix, takes a LOT of time.

I was socialized into a culture that tells me I need to work hard and constantly get ahead. (Someone asked me what my motto was last week, and my first response was "work hard." And then I couldn't think of a better one.) This sounds good in theory, but it can lead to problems, especially when you have health problems. I'm getting better about trying not to do everything I used to. I'm "active" in student activities at my university, but not nearly as active as I used to be. Or I feel I should be.

When I read amandaw's "Second Shift for the Sick Post" (which can be found here, and which I highly suggest reading), it was like a light bulb went off. I mean, I knew dealing with my health takes a lot of time, but being able to put it in feminist and sociological theory really helped.

Sometimes, usually when my health is going through a lower point, I get to the end of the day and wonder where the time went; I'm exhausted, in pain, and nothing in my planner has been finished -- yet I feel like I've been busy trying to be "productive" all day. I used to beat myself up on those days. And I won't lie, I still do. But I've gotten better, because now I realize that what I have been doing is my "second shift for the sick."

What am I spending my time doing? There's prescriptions to be filled, doctors to be contacted, insurance hoops to be jumped through, etc. There is also the time I need to spend on self-care: stretching, heating pads, eating at the right times, etc. And finally, my brain and body is spending a lot of time simply being ill--I need to be in bed, my brain too closed-down to be "productive," everything has to be dark, etc. And this all not only takes time, it takes energy.

When I really sit down and look at it, there's a lot going on. I'm not so lazy after all.

Gives me Hope, pt. two of many

2010-02-27T13:31:00.000-08:00

It's been a hard week, but it's starting to get better, so I thought I would post somethings that give me hope:

Finding people who are passionate about feminism, especially in someone I didn't expect to have that passion.
Passion in general.
Created families.
My best friend. For helping me with my anger despite all she has to deal with. For not leaving me. For being the best person I know.
Teachers who buy school supplies out of their own small salaries so that the kids can have basic supplies.
Greg Mortenson
Cuddling
How hard people work to get an education.
How hard people work to survive and to help their loved ones survive.
Countries who try to measure their Gross National Happiness
The ideals behind the Olympics
When North and South Korea marched together at an Olympic opening ceremony

What gives you hope?

stages of change

2010-02-20T20:40:00.000-08:00

Tonight was not a good night. I thought I was doing a lot better at accepting that I'm might be in constant pain for the rest of my life. That I might never be able to tell how my health was going to be from one second to the next. But I'm not. I just can't fully conceptualize this as my forever reality, which it might well be.

I thought I had gotten to a point where I was happy with the way I'm living my life. Until I realized how truly angry I am.

The five stages of change are denial, anger, depression, bargaining and acceptance. People go through them in different orders. I think I'm often in several of them at once. Right now, at least, anger's my main one.

Among other things, I'm angry at myself at not being more in the acceptance stage. It's been over 3.5 years since my migraines became constant, and it feels like a while. I feel like I should be "farther along" towards acceptance. (Or mostly-acceptance, as I'm not sure I will ever fully accept my chronic health problems.)

But then i think about how I spent that time. I spent the first year in denial--I just assumed they were going to go away. I spent the next year in a different type of denial---assuming I could just live my life however I wanted and decide to just ignore my symptoms. (That didn't go so well.) That's two years on denial.

But now, I'm much more in the anger stage. I'm angry at my body for this "betrayal," anger at society towards the way it treats people like me, angry at my friends when they say things that hurt, angry at insurance companies, angry at a G-d I don't believe in... The list could go on.

I'm angry at a lot of things, but some of them are targets of misplaced anger. The anger is spilling over into other parts of my life and I didn't even realize until today. I want to work on untangling and dealing with it in healthier ways. And I think I can do this, now that I have noticed how angry I am.

But I also need to work on accepting my stages of change. Because I'm not a bad person for taking however long I need to get towards a happier stage.

Olympic ceremonies win

2010-02-13T00:56:00.000-08:00

As my friends and I were watching the Olympic ceremonies tonight, we were all guessing who would light the Olympic torch. Over two hours later, Rick Hansen rolled into the Olympic games with the Olympic torch. And together, Hansen, Wayne Gretzky, Nancy Greene, Steve Nash, Rick Hansen, and Catriona Le May Doan lit the Olympic torch in the stadium.

Every day, I am reminded that people with disabilities are considered lesser by society. Which is why, when Rick Hansen rolled in tonight bringing the torch, I smiled so wide my face hurt. Canada has this night to show off to the world what they are all about, and they decided to show off Hansen, a decorated paralympian. I am going to try to hold onto this happiness and hope.

The photo shows three smiling people holding Olympic torches at the opening ceremonies of the Olympic games. Hansen is sitting in his wheelchair on the left, a white man is standing in the middle, and a white woman is standing on the right.

This photo was found on India Times' website.

Working on remembering the good things

2010-02-08T10:52:00.000-08:00

I'm feeling a little stressed and upset, so I thought I would post some things that have been making me happy.

The song "Hide and Seak" by Imogen Heap (This YouTube video has the song and lyrics. Or you can find the lyrics here.)
An online world of friends and people who understand what it's like to be constantly ill and in pain. And who help me cope and live better.
Learning. Seriously, I love learning new things :)
Feminism and feminists :)
My best friend for starting a conversation about disability and telling me that I am not making up the hurt I feel. (Dear self-doubt, my friends will help me defeat you.)
Lauredhel at Feminists with Disabilities decided to include two of my posts in the recommended reading posts last week.
I am watching Un Long Dimanche de fiancailles (A Very Long Engagement) tomorrow night with friends. Love that movie!

Talking about disability

2010-02-07T22:22:00.000-08:00

In her book The Rejected Body, Susan Wendell wrote “experiences of living with a disability are not by their nature private, separable from the rest of life and the rest of society. They can and should be shared throughout the culture as much as we share experiences of love, work, and family life” (1996, 66-67).

I love this quote. In society, there is this idea that if sick people, especially sick women, talked about their health less, then they wouldn't feel so sick. This is a lie. But it's a lie that hurts. This quote makes me feel better about choosing to talk openly about my health.

"But I don't see disableism very often"

2010-02-04T20:21:00.001-08:00

A couple of months ago I tried talking to my best friend about why I find "Glee" ableist, which turned into a conversation about disableism in society. My best friend is a sociology major who always seems better at me at noticing failure around -isms. So I was shocked when she said she rarely sees disableism. Honestly, it really hurt--I see ableism every day. But what I had to remind myself is that ableism, just like sexism, racism, and any other type of -ism, can be easy to not see if you have that type of privilege (i.e. you are a TAB, etc.)

So here is a list of some of the places I see ableism. Because next time, I want to have a better answer than a look of shock and hurt. (This obviously isn't a list of all types of disableism, just a few of the things I experience frequently in my day-to-day life.)

I see ableism:

in the year it took me to make myself go to the Office of Accommodations at my university. And the fact it took me another year to actually start using my accommodations. I grew up in a society that told me that I had to be some stereotype of strong and using these accommodations was weak and bad. (Society was wrong.)

in what I call "the look of terror" so many people give me when they find out things about my health. Among other things, I strongly believe that if our society was more accepting about talking about disabilities, people wouldn't feel so bad or have so much pity when they find out about my health.

in the people, even friends, who treat me like a child. I am mature and very intelligent--being in pain does not decrease my age.

in friends who don't invite me to things because of my health. Seriously, being disabled should not mean you get to make my decisions for me. How exactly do you know what is better for me. Why do you get to decide whether I should do something that causes me pain.

in the campus that causes me pain. My campus, like most college campuses, is lit by florescent lights. Can you say ow! Sometimes I feel like a prisoner in my own room because it's one of the very few places not lit by florescent lights. Last semester I got so sick of being in my room that I took naps in my best friends room. Also, the chairs they have here hurt my back.

the fact that spell check is telling me, both here and in Microsoft word, that disableism and ableism aren't words.

in people's discomfort in talking about disability and health. It makes many people incredibly uncomfortable! I think that many health and disability-related conversations are considered taboo in our society, and they don't know how to react when you break it.

the invasive questions people ask. Just because I have told you I am in constant pain and we have talked for five minutes, does not mean that the next time I see you you can ask me my pain level. "How is your migraine today" is not the new substitute, for "Hi. What's up," especially if I barely know you.

the looks I get when people find out how many or what medications. And the assumptions people make about the type of person I must be if I have these meds.

in the lack of portrayals of disability around me. Where are the disabled models? Where are the positive portrayals of disability on television? (This could be a dissertation there is so much fail going on in this category, but I'm going to keep the list short.)

Parsons and the sick role

2010-02-03T16:08:00.001-08:00

I am currently studying disability in uni and I thought I might post a bit about it this semester in case anyone was interested.

This week, I started off my course by reading “Social Structure and Dynamic Process: the Case of Modern Medical Practice,” which is a chapter in a book Talcott Parsons wrote in the 1950's that talks about functionalism (a sociological theory). It is an important theory in the sociology of health, but it has serious flaws when it comes to chronic illness and disability.

Parsons' sick role theory has four parts. The first part of the sick role is an exemption from certain societal normative expectations. For example, when you can call in sick to work with the flu. Second is the belief that the sick person cannot just will themselves to get better – they must be healed, and this often requires being taken care of. So you can't just wish you were better, you must go to the doctor (according to the theory). These two points are dependent on the third part of the role, which is that being ill is undesirable and the patient must wish to get better. The final part of the role is an “obligation” to go to a doctor and “cooperate” with him in order to get better(p. 437).

Parsons’ model for the sick role is based upon the idea that, ultimately, the person will heal, which is a fundamental problem when you apply it to people who will not heal. However, I think there is also a societal expectation that people will be primarily healthy and, if sick, will heal quickly.(Wouldn't that be nice....) So I supposed the theory does align with reality in that regard, it's just a problematic reality.

Because the foundation of the theory does not stand up when applied to chronically ill people, the sick role theory is not accurate in describing the lives of chronically ill people. We are often no longer exempt “from normal social role responsibilities”(p. 436), even if we need to be. For example, when I need to miss a class with a migraine but a professor gets angry because I have missed so many. There is also often anger if the person does not seem to be actively trying to get well (i.e. fulfilling the last two parts of the role), even if the health problem is chronic and getting well is just not a possibility.

Another thing that interested me was the role of the doctor. Parsons wrote that the job of a doctor is “attempting to restore [patients] to health or normality”(p. 429). But what is the role of a doctor if it is impossible to make the patient "healthy"? I think this is something the medical field and society are still struggling with.

Gives me Hope, part one of many

2010-02-01T16:47:00.001-08:00

So thanks to Annie, I recently found a website called Gives Me Hope. So here are some things that give me hope.

My doctor who, among other things, lets me email her as often as I want, asks about my life, and helps make sure I can afford my treatment.
The specialist who, a year ago, offered to treat me for a decreased rate so that I could afford it.
My roommate who (despite not having severe chronic pain) is always willing to listen to me talk about disableism, understands more about it than most fairly-healthy people, and is willing to admit that she doesn't know everything about chronic illness and disability.
My other best friend, wh0 is always there to listen to me, take me to medical appointments and who has done more than I can say for me.
People who deal with my health problems in a way that makes me feel respected and happy.
Friends made online.
People who laugh with me at my health jokes.
Chronicbabe.com
Feminists with disabilities

little-big disabling things

2010-01-31T02:07:00.000-08:00

I MISS being able to leave my room easilty. Why does so much of the world have to be lit by florescent lights? Why do I end up in disabling pain just from sitting for an hour with my friends eating dinner under florescent lights?
I wish I didn't have to plan my wardrobe based on my pain level of the day.
Similarly, it would be nice if I could put my hair up without that hurting.
Chairs! Wouldn't it be nice if the chairs didn't hurt my back and make my pain levels worse?

It's funny how all these little things, that so many people never think about, can be so important. Can basically trap me in my room--and even hurt me in my room. Sometimes I flip off the florescent lights-curse them out with my hands and voice.

But how do you build a university and a world with my accessibility needs in mind? Would it even be fair of me to ask that?

Birth Control

2010-01-31T01:53:00.000-08:00

Next up on my list of treatments is birth control. I may start next week. I really hope it works, but it seems unlikely. After all, I've tried over 20 medications.

But I'm scared: part of me is hopeful that this might help and that hope could be a problem. The more hope I have, the more it will hurt when the treatment doesn't work. And despite how many things I try--pills, injections and alternative treatments--it always hurts when it fails. I try to be as pessimistic as possible about the possibilities so that it will hurt less. (Sometimes people who don't have similar health problems try to convince me this is the wrong way to go about it. But I'd rather fall from a low height, of low expectations, than a high one.) I've fallen over 20 times and it still hurts every time. I think I cry every time.

So here's a hope it helps. And here's a reminder that it probably won't and that I have friends, online and in meatworld, who will be there to help when it falls apart again. And here's to hope. To still having hope. And to the strength it takes to still have hope and to keep trying treatements instead of saying "sod it."

I'm back

2010-01-27T16:21:00.001-08:00

I haven't had internet access or been home for a couple weeks, but I'm back and ready to try to find more positivity and deal with more health decisions. Yay....?

Gratefulness and What I am Grateful For

2009-12-26T08:55:00.001-08:00

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.

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

2009-12-24T21:55:00.000-08:00

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

2009-12-24T21:53:00.000-08:00

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.

7 Things I am Happy About Today

2009-12-20T11:46:00.000-08:00

It's nice to be home for a short bit to see my family, friends, dog, etc.
I get to see M tomorrow.
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!
We have beautiful snow!
I have wonderful friends.
This week's Dollhouse was fabulous.
My parents put beautiful tulips in my room to welcome me home.

Am I Disabled? (Part 1)

2009-12-13T12:47:00.000-08:00

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.

More things I wish I could tell people

2009-12-12T10:50:00.000-08:00

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.

7 Things I am Happy About Today

2009-12-10T18:50:00.000-08:00

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

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

2009-12-09T20:51:00.000-08:00

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.

Don’t run away from me because of my health. And if you are doing so, examine your ableism or [insert reason(s) here].

Remember that you have no right to my health information, so if you're asking questions, make them optional questions instead of demands for information. Modifiers are often a good idea, eg: "Would you mind if I asked....?" Just because my body doesn’t work the way societal norms expect it to, doesn’t mean you have a right to know what pain level I am in or other personal info.

Don’t expect that if I have told you one or two things about my health, I want to tell you everything.

At the same time, don't make an effort to pretend my health is fine. It's not and it takes up a lot of time, energy, etc.

Don’t touch me without asking. Even if I truly like you and usually enjoy your hugs, on a bad pain day, there are only a couple of people that I can stand being touched by.

Don’t assume you know what is best for my body. I know it better than you do.

Do try to still include me. If I can’t leave my room, ask if I want company. I love when people try to find ways to include me.

Don’t police my identity.

Don’t suggest I haven't gotten better because I’m not trying hard enough or because I don’t know what is best for me. Another one I would assume is obvious, but does not appear to be.

If you are not sure if I will be able to make it, ask! I will feel better knowing you wanted me there, even if I can't make it.

Don’t ask me to do something that I have told you repeatedly that I am never able to do (i.e., even on my best days). For example, if I have told you I will not be able to ride a bike until I have finished PT, don’t ask me every two days if I want to go for a bike ride.

Don’t take things I use for my health without asking. In particular, don’t take my ice packs or heating pad. I am very dependent on them some days and I feel out of control knowing they may not be there when I need them.

Don’t make fun of me for how many pills I take. Society already does that enough.

Don’t give me your super special advice about what I should do to get better, although suggestions are accepted, even appreciated, on occasion. If you are using words like “all you need to” or “just” or “you should” -- back off. If you start with, "I don’t know if you want to hear this, but I thought of you and maybe you would be interested in this…" then maybe you're ok. It’s hard to explain when it is appreciated, but it’s been done well twice in the past 8 months, and badly many, many more times. Keep in mind I only have a certain amount of energy, money, and time. Plus, if you’ve heard of it, I probably have too. Also, I’m the expert on my body.

Don't try to decide what I can and cannot do. You shouldn't have that power and it's insulting, frustrating and limiting when you trying to take that power anyway.

30 Things About My Illness - Meme for Invisible Illness Week

2009-12-09T20:48:00.000-08:00

(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.

10. Each day I take __ pills & vitamins. (No comments, please) Minimum two types, but usually it is much much more.
11. Regarding alternative treatments I: have seen a nutritionist, acupuncturists, and a biofeedback person.
12. If I had to choose between an invisible illness or visible I would choose: it depends on the type of illness.
13. Regarding working and career: I am a full time student taking the maximum number of classes and very involved in other things.
14. People would be surprised to know: How much time my health takes. And also that I think it will/would be difficult (although fabulous!) to readjust to not having daily migraines
15. The hardest thing to accept about my new reality has been: the constant pain, the monotony of it.
16. Something I never thought I could do with my illness that I did was: function (go to class, work, etc) with bad migraines.
17. The commercials about my illness: Make me excited that they found something, then annoyed when I realize it's excedrin.
18. Something I really miss doing since I was diagnosed is: sports.
19. It was really hard to have to give up: parts of my independence.
20. A new hobby I have taken up since my diagnosis is: I'm on the internet more and watch more tv.
21. If I could have one day of feeling normal again I would: go for a trip with my friends, somewhere sunny.
22. My illness has taught me: it is helping me get better at being good to myself.
23. Want to know a secret? One thing people say that gets under my skin is:they joke that I use my illness or that I am a druggie.
24. But I love it when people: tell me how strong they think I am.
25. My favorite motto, scripture, quote that gets me through tough times is: My friend texted me something reminding me that migraines do really hurt (I tend to self doubt myself and be mean to myself).
26. When someone is diagnosed I’d like to tell them: it gets easier and its ok to have anger or pity-part days once in a while. You don't have to be perfect.
27. Something that has surprised me about living with an illness is: how much it affects me.
28. The nicest thing someone did for me when I wasn’t feeling well was:so many things.
29. I’m involved with Invisible Illness Week because: I feel alone.
30. The fact that you read this list makes me feel: thankful.