Botox

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

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

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?

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!

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

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?

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

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

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

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.

Closed Capitioning

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

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...?

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

*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

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

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

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

"migraines aren't disabling"

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

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

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

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

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

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

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

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"

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.

Parsons and the sick role

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).

Gives me Hope, part one of many

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

1. 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.
   
2. The specialist who, a year ago, offered to treat me for a decreased rate so that I could afford it.
3. 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.
4. 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.
5. People who deal with my health problems in a way that makes me feel respected and happy.
6. Friends made online.
7. People who laugh with me at my health jokes.
   
8. Chronicbabe.com
9. Feminists with disabilities

little-big disabling things

1. 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?
2. I wish I didn't have to plan my wardrobe based on my pain level of the day.
3. Similarly, it would be nice if I could put my hair up without that hurting.
   
4. 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

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

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....?