This morning I took the Paratransit bus to my neurologist appointment. It got me there way too early, so I spent 45 minutes staring at their reef tank while trying to identify the fish and corals online. A starter tank similar to the one in the office goes for $6000. It’s about a 200 gallon tank. The office tank had more species.
I got a guy nurse who was curious about my West Nile Virus. I wish I never had to think about or feel the effects of WNV ever again! I think it did more to wreck me than myasthenia gravis did. The nurse didn’t think my blood pressure was right. I told him that was a normal number for me when I am not in too much pain. I was 104/70. Nurses always expect fat people to have a high BP.
The weirdest thing about this morning was my lack of intense rib pain. I never bothered to tell the doc about all I went through the last 2 weeks. He’s the wrong kind of doc, anyways.
My lawyer asked me to get a letter from him that clearly says I need IVIg, I have MG and IVIg makes me better. He started his usual waffling. He’s willing to give me IVIg and tell me I have MG, but he was afraid to go against the teaching hospital that wants me undiagnosed. Then he looked at the medical records that Heather sent me from the MDA docs in Vermont and Florida, and suddenly his spine was reinforced. He actually got happy. He was gung ho on treating my MG and fighting my insurance company. How many times do we have to go through this???
What the heck does the unholy trinity of state/insurance/hospital DO to docs? Why do docs quake in their boots because of them? Having the back-up of Muscular Dystrophy Association clinic doctors gave my good neuro the courage to believe his own eyes. I am impressed that he grew a pair and is wanting to fight.
Now let’s hope the administrative law judge is fair and impartial. From my point of view, it’s pretty obvious I have had MG for a long time and that IVIg makes me into a functional human being. But am I worth helping? Am I worth paying the cost of treatment? We will see what the judge says next week.
Then I trekked home in the heat and strong sun. The whole way I ruminated on the neuro visit. He seems convinced that I also have CIDP. I am tired of being a freak of nature. I want to spend one day feeling OK. I haven’t felt OK since my IVIg wore off in March. I am surprised that my neuropathy is so bad. I couldn’t feel what he did to my lower legs. Sigh…. I guess if something is numb, that’s a plus with my body. It’s one place that doesn’t hurt too much.
By the time I got home, my lupus was really mad. I don’t feel very well from that 😦 I won’t go into details. Ugh. But….I AM psyched that my rib pain is mostly gone. Will it stay away or come back? I don’t see my GP until next week. The worst pain tonight comes from my hips. My legs feel like they are trying to rip out of their sockets.
I have been on quite a streak of being bummed, grouchy, annoyed and/or pissed off. I am tired of being sick, tired of being poor and tired of being jerked around. I am not sure if I am being extra touchy or if the crap has been hitting the fan more often than usual. Well…..I am sure it’s both…duh!