Wednesday, February 22, 2012

Things That Make You Go ARGH!

It's been one of those weeks where becoming a hermit looks rather appealing. Multiple factors have contributed to an exponentially higher amount of contact with the Medical World. In the Blind Person v. Medical World war, I am currently getting my backside handed to me on a surgical steel platter.
I have a ten page form to fill out for a doctor. The PDF is an image not text. The office manager tried to turn it into text, but it doesn't exactly work. I'm going to need to sit on the phone and go through the entire thing with someone.
That, however, had a better resolution than the next problem. I have an online questionnaire to complete for another doctor. They have designed certain parts in a way I can't seem to negotiate. I made extensive notes on my answers and called the doctor's office.
Once I explained the problem, the first question was so predictable, "Isn't there someone who can do it for you?"
"Um, no. Can I email all these notes to someone so they can fill it out for me?"
"No." I'm bringing my notes to the appointment in the hopes that someone will better understand the problem when my guide dog is standing by my side.
And the final bit of insanity. I need to have a study of my stomach's ph level. There is great technology that allows them to monitor it 24/7 if I just carry around a little box. I asked the doctor, "Is sight necessary in any way to do this?" I was assured not.
Being skeptical, I asked the scheduler. "Yes, of course. you need to log your symptoms as they happen."
"there's no way around it?"
"No."
"I can't have someone with me 24 hours a day."
"I don't know what to tell you."
She is leaving a note for one of the nurses who might be able to solve the problem. Otherwise, no stomach test to help us sort out the cause of my tracheal stenosis. Without being able to pinpoint the cause, I won't be able to avail myself of the permanent solution.
People speak about the privileges I sometimes receive as a result of my disability – reduced bus fare, cutting ahead in lines, access to free audio books, extra time on tests, or being able to have a dog in a no pet apartment. I would relinquish them all, even the dog, to also rid myself of events like the above. Trust me when I say that lower bus fare is not compensation for the ongoing battles I must wage in the Blind v. Medical World war that is consuming my life.

1 comment:

william Peace said...

Ugh, this is so typical. Barriers to basic health care abound. I have been on a scale exactly three times in 35 years. No institution owns a working wheelchair scale. They own such scales. None work.