I left around noon and came back after 5. That’s torture for someone as weak as me. We had wind gusts up to 60-something mph in Utah. Going into my doc’s office, my eyes got full of flying dust and grit. I flushed them with water, but now they hurt and sting.
The nurse caseworker that I liked, ended up coming to my appointment. I was VERY reluctant. She assured me she was there to help my internist help me. She reminded me that she is the one who did the paperwork and phone calls to get my blood transfusion. I hope she is for real, not like the evil caseworker.
I spent 2 hours in the exam room. I had written out the story of me getting weak and paralyzed, a page of symptoms and a page listing what I thought were the most important issues that had to be dealt with NOW.
First the nurse/caseworker and I went over everything. She and the doc got excited about this week’s video of facial and tongue fasciculations. They were also amazed at how I could lift my head with my hands and talk with a normal voice. I was so tired that tipping my head way back to talk only yielded a few good words before choking commenced. I LOVE making my voice come back!!!!! I miss it soooooooo much!
My doctor kept wringing his hands and asking what he should do. He still thinks I should move back to Vermont. He doesn’t know how to fight the system any more than I do. The nurse/caseworker thinks she can get me to an out of network neurologist who will be able to treat me. She said my videos prove what’s wrong and they have to give me appropriate care. Ha ha ha ha ha ha….choke, cough, choke. I will believe it when I see it. How many times have I heard that now in Utah???
The doc ordered the MTHFR gene mutation test. The nurse and I giggled about what word it looks like. Some of us never grow up 😛 Now we have to wait and see if insurance will pay for it.
The doc says I shouldn’t worry about a GFR of 54. He says it’s because I’m old. I hope he’s right. Several of us with WNV have the same number. Long term, WNV can cause kidney disease.
I had a heck of a time getting out of the doctor’s chair and back to my wheelchair. All that talking and coughing and choking made me feel like I weigh a bazillion pounds. Oh, speaking of coughing, that lump that popped out on my right rib cage, just under my breast, is my intestines! 😩 He says between my hernia and the choking, it pushed my intestines up and out 😳 We all admired how huge the hernia is, especially when I cough. Then the doc swabbed my belly wound to have it cultured. He is waiting for those results before ordering a CT scan to see if there are any new holes in my intestines. He wanted ME to tell him where the infection is that’s causing my fevers. I said I don’t know if it’s the belly wound, intestines or lungs. Each one acts up.
The doc gave me a 4 page computer summary of the visit. 3 pages were the med, problem and diagnosis list. Geeze! I look bad on paper 😜
While I was writing, a fire engine, then an ambulance showed up. I stuck my head out the door and they went to my ex-neighbor’s house. Uh, oh. I think she goes to the hospital at least weekly. When I came home from my doc appointment, she was sitting by the mailboxes. I stopped to say hi. She was coughing deep and phlegmy. Someone told me she went back to smoking 😞 She has been a lifelong smoker. I am surprised she has lived this long.
I started getting chills between the TRAX station and home. An hour after taking an 800 mg Motrin, my temp was 101.9. I have been going back and forth between chills and burning up for a few hours now. Yuck. I feel unwell.