Nerve block round 2

Today I went in for an appointment to repeat my nerve block.  The doctor and medical staff were all lovely.  But I arrived at about 2:35 and didn’t leave until 5 pm for a short appointment.  I was a bit early but got into a room right away.  Did the intake paperwork and questions.  Then sat to wait, and wait, and wait.  I tried to read my book but felt too tired.  I put my head on my hand, leaned on the desk, and fell asleep.

The very kind medical assistant came back in an apologized, and offered me hot chocolate or coffee, which I accepted.  Then I saw the doctor.  She thanked me for waiting and we proceeded.

I had a vasovagal reaction to the injection.  This means your blood pressure drops, you feel queasy and hot, and you better not stand up because you could faint or throw up.  Faiting is mainly a concern because you could hit your head or otherwise injure yourself.  This has happened to me a few times before, including once when I gave blood.  They lowered the table flat, gave me some cold washcloths, and made me lie still for an hour, monitoring my blood pressure and heart rate.  Even after I was feeling better, my heart rate refused to rise until I got up and walked around with the nurse.  By this time it was nearly 5 pm and my doctor had gone home.

The doctor asked if I’d had enough to eat today.  I said, probably not.  In part I had not planned to sit in the waiting room for an hour; I’d expected to be in and out.  Luckily I had a granola bar, some hard candy, and a water bottle in my bag.

If this goes like last time, I expect to get a bad headache tonight, so I bought popsicles and made sure my ice packs are in the freezer.

Health care can take a lot of time and be a lot of work.

Advertisements

Me + Disability Studies = Love at First Sight

So, why am I interested in disability studies and activism?

For most of my adult life, I have had chronic ill health.  At first, I didn’t really understand what was happening to me, and kept assuming I would get better.  Eventually I realized that I wouldn’t get better, and I even stopped expecting a diagnosis.

As you can imagine, being a young ill person, with no satisfactory diagnosis, was very frustrating and upsetting.  I wrote a few years ago about what it was like to live without a diagnosis.  I did not expect my life to go this way and I did not know how to cope.  My illness affected my ability to work; and I still don’t really know how to talk about it. I find writing about it to be much easier.

In 2007 I went to my first WisCon, a feminist science fiction convention.  In the packed of registration materials, there was a handout on the convention’s disability access policies. Reading this handout was a revelation.  I realized that I was a disabled person, and that this space welcomed me as such.  Simple accommodations such as water service in every room, a designated quiet space, signage and maps identifying the bathrooms, and ways to manage stress, were designed as if they had me in mind.  Rules for etiquette were clear and logical.  Me plus disability studies equaled love at first sight!

Like other social justice movements, disability studies tells you that it’s OK to come as you are.  That you are welcome and valuable as yourself.  You don’t have to try harder, or struggle to be someone else.

I decided I just had to learn more about the Access Team at WisCon and get involved.  I befriended Jesse the K, who eventually handed over the reins to me, and now I am the Access Chair.

WisCon is known for being a leader in accessibility; we hope to keep it that way.  I want other people to be able to fall in love with disability studies the way I have; I want other folks to feel welcome in our space whether they are disabled or not; and I want other conventions, conferences, and events to adopt similar policies.