What does a disability advocate do between badminton and fighting forces of darkness (vexing Fran and Triumph)? Well first I checked my sitemeter and found that I got a referral from www.hoes.com (From the “Kink Girls” section). Nothing like knowing how you stand as a Hoe. And just a public service announcement to the guy who arrived here after searching for “naked lesbian horse sex”: please, there are free 24 hour therapists, just pick up a phone.
Of course, no Monday would be complete without a message from “The Specialist.” A clipped phone message saying I must show up at the hospital the morning of Feb 19th for two lung tests before another test which has been scheduled (but which I am not to be told the date or time of) can proceed. It turns out that this was from my Heart Specialist, who I have not seen since April 2007. I was a bit narked the way they just announce the appointment from a specialist I haven’t seen in almost a year when Cheryl (who was visiting) says, “Isn’t the 19th tomorrow?” Shit! It was. Less than 24 hours notice? I called Linda who called the specialist and apparently these two tests have been designated “urgent” and “immediate” though no one is telling me why. And the tests were going to take more than two hours. I called Linda again and asked, “What kind of Scan takes over an hour, are you sure they aren’t injecting something?” This is because I have extreme needle phobia and need to be sedated for anything involving a needle and put under for anything prolonged because I also have “invasive body phobia” which means having an IV in me gets me very….agitated (like thrashing and screaming agitated).
The test after this is the 20 minute liquid metal though the IV into the heart, which now, after seven months the heart specialists say they WILL get an anesthesiologist for. Turns out the two lung tests which I was given less than 24 hours notice for DOES have a needle involved (what part of NEEDLE phobia don’t they get?). But apparently these tests are super important, and super urgent only no one will say why. So, hey-ho, a ton a valium and a needle I will go (just typing that sentence increased my heart rate by 20 bpm and makes me feel sick in my stomach)!
So, tomorrow was SUPPOSED to be the day the tech support person was coming to install DRAGON naturally speaking 9 and help me set everything up. But now, I can’t do that until next week because I have medical appointments every day this week. Shit! I worked so hard for Dragon and now I have to delay it to get a needle? Anyway, my GP called last Friday to book me an emergency meeting for 40 minutes on Wednesday; but as I was booked on Wednesday so now it is Thursday. “What is it about?” I asked.
“It is an important information and planning session.” I was told.
What does that mean? I still feel like I have been called to the principal’s office.
For those who want some circle of life irony: in a long conversation on the phone I determined that my father has a series of rather serious neurological issues including: fatigue, brain fog, trembling of the left arm and hand, deadening of the left foot, dramatic loss of vision in 6-9 months, inability to stand for more than three minutes, etc. I methodically, on the phone went over every part of his body and what is it like now and what was it a year ago. If there was a change I said, “Write it down” until he had a list to show his doctor. He saw his doctor today who has immediately referred him to a neurologist: has referred him Dr. A., the same Neurologist who hasn’t returned any calls from my GP for 4.5 months. I have to wonder how long his condition would have continued unnoticed if I wasn’t so “expert” now in all the various possible neurological symptoms. I only have to hope that Dr. A. (the one who put me down for “Conversion/hysteria” and wasted 7 months of testing), sees and does a better job than with me. Bitter? Me? Nah.
I also got a call that a swallow/speech therapist would be coming on March 4th to watch me eat a meal. I guess the concept that I might be doing something on March 4th already is impossible. I told someone at boxing that I don’t know if I handle the hours of testing as it is like having a job. They said, “Yeah, but you don’t get paid!” Always a joy to share your problems with others.
I guess I am so tired that 14 months on and we are doing round…..seven? Eight? Ten? of DIAGNOSTIC testing. We all know what I have but I guess this tells people how it is affecting me or has spread. I am just tired of it; treat me or let me have a life where I can plan DOING something because every single day for as long as I can remember has been full of meetings or testing (or dental work – or both).
My care worker tried to cheer me up by saying, “Hey, at least it isn’t the Barium Enema this time!”
Yeah, feel SO much better now!
8 hours ago