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My Montpelier, Vermont primary care doctor used to say I was like a full pickle barrel….no room for one more drop…or one more problem. He emphasized that when the pharmacy filled my Zyrtec bottle with Zyprexa.

I was already very sick and that mistake made my world fall apart. In isolation, it probably have been a temporary sickness. But with all the other stuff going on, it became a crisis. That was when I started needing multiple packed red blood cell transfusions….and all hell broke out in my body.

I feel like I am in the same sort of situation again. Anything that makes me weak sets off a whole chain reaction of other things. Because I was so sick to begin with, the fluorescent lights totally messed me up last weekend. Most of my body is covered in lupus rashes. My scalp is still bloody and my hair is falling out in clumps 😦

Now there’s my thumb. How could such a little thing turn soooooooo excruciating? I cried a heck of a lot of tears over it today. The actual bump is much bigger. My thumb joint and wrist are swollen and the pain has triggered that same shoulder joint pain I got soon after WNV. You would never believe how many times a day people touch you there or how often that joint is needed to do a signature, use eating utensils, put on or take off clothes, use keys and on and on…..

Just when I thought I had suffered enough fluorescent light damage, today I had to spend 5 or more hours under them again 😦 My ears, the sides of my face, the back of my neck plus my shoulders are just covered in lupus rashes. It didn’t help my brain any, either!

I got measured and evaluated for my power chair this morning, which took hours…then I dropped off paperwork for my new rheumatologist and I took a page of blood tests that needed doing to the lab.

My regular doctor had ordered a WNV IgG test the same day he prescribed the deadly eryrthromycin. I had forgotten all about it. Wouldn’t you?

My new neurologist ordered a bunch of MG tests. It took the vampire two very painful pokes to get a vial of blood. I felt prompted to ask her some question about the tests I was getting. That’s when I discovered I had been given the WNV test that was electronically stored on the computer instead of the MG tests that were on the paper I had handed them. CRAP!!!!!

The supervisor then came over, handed me my paper and smirked. She assured me what was on the paper was merely “doctor’s notes” and not blood tests. I did not know what the first three tests were, but the 4th one down was the MUSK test for MG. She very condescendingly told me I was wrong and again gave me the paper back. I asked her to please call the neurologist’s office and get it straightened out. Of course that took more than half an hour. The supervisor then came back to tell me we were now waiting for clarification. I told her probably only about 5,000 people a year in the US would even get that test. She haughtily said her lab was one of the premier ones in the country, so if anybody performed that test, they would.

Last I knew, there was only one place that did MUSK tests. I had been one of the first crop of MG’ers to have it done, maybe 10years ago? Well…didn’t she have to eat her words? I am surprised she admitted it to me. My blood had to be sent away. And it had to be sent in some special tube…so I had to get poked a third time 😦

I took a taxi to the hospital today because I felt too weak to drive and I didn’t think I COULD drive with my thumb so painful and swollen. The taxi pick up and drop off place has, indeed, moved out to a little island away from the building.

Saturday the ER person pushed the wheelchair to just outside the front door and left me out in the 20-something degree night. The taxi pulled up out at the little island. I hollered for him to come get me, he said taxis were no longer allowed near the building. I was skeptical. Then I forgot.

When today’s taxi dropped me off way away from the building and I got left out there, I just sobbed. I didn’t have enough strength to go all the way to the building.

A valet went by pushing 2 empty chairs. He asked me if I was OK. I just shook my head no. He asked if I needed a ride in a wheelchair. I just shook my head yes. When he came back with my supersized chair he informed me the taxis got in the way. I was ready to punch the able-bodied brainless fool who made that a universal rule!

So…as far as I know, this PT is making recomendations for a specialized power chair, identical to the last PT’s report recommendations. We talked a long time about my various disabilities. I brought MRI and CT reports telling about the squished vertebrae in my neck and lower back, plus degenerative changes in my hips and feet. The whole thing brought me face to face with my assorted disabilities. That made me crumble into a bazillion little pieces and I sobbed some more. It also made me feel hatred for the idiot neuro who put me through all this by telling my insurance company that I could walk 200 yards without resting and had a normal gait. Every person in this building could testify that’s not even close to the truth.

And would you believe that what should be joyous has me sobbing? Heather wants me to come visit in a week. She’s willing to fly me to Portland. For awhile, I had fantasies of driving the RV…and then I realized how stupid that was. I don’t even have the strength to buy groceries or always go to church!!! I keep taking taxis to go 6 miles because driving would be too strenuous!!! Duh. And truth be told…I don’t even have enough strength and stamina to fly 😦 That made me sob some more.

And then there’s Rhett. He is acting bizarrely again. He has never had such intense mood swings. And he is not only being a PITA at home, but is causing trouble at school.

Tonight he told me he no longer has faith in God and that’s why he wouldn’t go to the apartment sacrament meeting or our ward church with me. Yet he just reloaded the Scriptures on his talking book machine…and kept saying he wants to get sealed to me in the temple…just a few days ago. He seems to have several distinct personalities going on. It’s frightening. There is soooo much more that I haven’t said about that 😦

AND, when I finally looked at Rhett closely when he got home from school, I discovered a big gash on his forehead, with a trail of crusty blood running down between his eyes 😮 He had smacked his head into something in home management class. Just what he needs…more brain damage.

Yes…my plate seems way too full. And speaking of eating…last week I didn’t eat much. BUT…the shirts that fit me last week don’t fit me this week. My upper arms gained inches in girth, seemingly overnight! My back hump also got humpier. That’s weight gain as if I were on prednisone. What. The. Heck!?!? Could my body be producing extra cortisol with all of my autoimmune diseases flaring up.

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And guess what’s flaring? The lipodermatosclerosis leg is getting another attack. The are crummy pics…but you get the idea. There is a new chunk of my leg missing 😦

I really need cheering up

 

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