The estimated prevalence of spasmodic dysphonia is 1 case per 100,000 population.
The prevalence of myasthenia gravis in the United States is estimated at 14 to 20 per 100,000 population.
Why does my body have such a hard time being normal? Why do I have to wade through so many idiots before I get appropriate healthcare?
Tuesday we broke a temperature record. I saw 59, but the TV said 58. I like this sort of winter temperature in January 🙂 Glad I am not on the east coast. That pretty much wipes out power wheelchair travel with all that snow. Few people clean their sidewalks well enough in a light snow.
Ugh! Last night sucked. Lots of pain and feeling yucky. I was not amused when my phone alarm went off at 8 AM. It felt like I had hardly slept. For once I woke up with my hair looking better than after a shower. It rained overnight and made curls pop out. I don’t like flat, static electricity hair from living in a desert. I was glad I didn’t have to do anything more than get dressed and run a comb through my hair. I also lucked out that the rain stopped so I could both get to and come home from my appointment without getting wet.
I was miserable when I got to my appointment. I started having a deep cough this morning and I am wheezing. My guts are sooooo not happy and the belly area is very tender. Pain makes my eyes droop even more. I haven’t been able to fully open my eyelids today. I was already bummed out that the doctor is on leave of absence. Turns out her replacement was a nurse practioner. She doesn’t have enough medical clout to order genetic testing like the doc was going to do.
I liked the NP, but I have come to realize I loathe being subjected to people with an agenda. She wanted to go through a bunch of meaningless questions instead of just listening to my story. A waste of time. Her job is to recheck people who get psychiatric drugs from that facility. I am not on any of those drugs. I saw the psychiatrist so she would put it in my record that I don’t have panic attacks or Munchausen’s, like the clueless ER docs said when I went in to the ER, on the edge of myasthenic crisis. Both my counselor and the psychiatrist agree that I don’t have depression or any form of mental illness.
The NP read me the notes the psychiatrist had about me. They weren’t very accurate. The doc apparently went over reams of medical records and jotted down what she thought was most important. I have never had a sleep study in Utah, just overnight oximetry at home. The notes said I have a CPAP, but not sleep apnea, just hypoxia. The NP looked grave and said that was bad. Sigh…. I didn’t argue. I have both central and obstructive sleep apnea. That’s why I started with a CPAP many years ago. I think the hypoxia started thanks to congestive heart failure and MG. Anyway, it’s a picky distinction. I wish medical records were accurate. Each person who transcribes or alters the record has the power to change my life….both positively and negatively. I used to think none of it mattered that much. Ha! I do get 5 liters of oxygen fed into my CPAP….which works pretty well unless Olive chews through the oxygen line.
Then she read through a bunch of blood tests and medical diagnosis’. She got to the idiot neuro’s stuff and read that I don’t have myasthenia gravis. I was labeled as an IVIg drug seeker who was fixated on thinking I had MG when I don’t. I just laughed and said that neuro was an idiot. The NP was taken aback, but wouldn’t let me get in a word edgewise to explain about the 2 year nightmare. Finally I was able to interject that I had a new neuro and am now prescribed IVIg again. I found it VERY amusing that the idiot neuro sent records to the shrink, but not the lawyers or the other neuro. My new neuro went to the source and got records from my previous real MG neuros.
Next we talked about my new diagnosis of spasmodic dysphonia. Of course the NP had never heard of it. I tried to explain it is neurological. I get extremely tired of people jumping on the “crazy” bandwagon and blaming everything on some sort of mental illness. NO….I don’t talk this way on purpose! When medical people don’t immediately have answers, they sure love blaming stuff on some make believe mental defect. The NP didn’t do that, but I could just see those wheels turning in her head.
Most of the appointment, the NP spent complimenting me on my passion, perseverance, telling me how strong I am and that I have an incredible spirit. I like hearing that stuff better, but not really by touchy feely people who make “appropriate” sad or happy faces and continually grab my hand. On the way out the door, she was patting me, hugging me and just about kissing me. Eeeeewwwwww.
All the way home I realized how much I like being in charge of conversations and NOT being new agey. The good thing is, I never have to see her again 🙂 I like my counselor because he is good at listening and he isn’t touchy feely! I think of him as my cheering section who sometimes gives good advice 🙂
I didn’t want to do it, but I forced myself to go an extra half a block and go to my bank. I needed quarters. I had $34 in my account, so got $30 in quarters. I need to get my laundry lady to do laundry for me this week. Huh, I just realized there haven’t been as many bank robberies in the news. For awhile there, there wre multiple robberies a day. Nowadays it’s a killing or two a week thanks to local cops. Funny how their body cams are always turned off.
Oh! Speaking of cops, they must be working State Street today. I saw two different traffic stops. I wish they would nab the texting drivers who almost run me over in crosswalks! I doubt I have ever gone anywhere in SLC by myself without close calls on the roads. One old lady in a wheelchair doesn’t even register in the pea brains of some people. It’s less dangerous when my next door neighbor and I toodle over to FNB. I guess we would make too big of a dent in their cars.
Yes, I am feeling sarcastic and miffed today. I know I cannot change the past. I hope I can influence the future. I would love to see the idiot neuro disciplined so he doesn’t mess up anybody else. It’s painful to remember all I have been through since I got to Utah. Ironically, if I really start getting IVIg, I am going to be reluctant to leave. Life is always interesting and often unexpected!