I ran out of Plaquenil, so I had to venture out for a refill. Both pharmacists remarked something to the effect that I look like hell. Gee, thanks! 😛 While I was there, I made an appointment with my NP. Then I hurried back home to get ready for a phone appointment. I wondered how it would go with a very broken voice. I had warned her last week that I never know when my voice will work…or NOT. I don’t think she believed me. She understood virtually nothing I said today. I croaked out email and she took the hint. Much easier 🙂
For 2 or 3 days now, my spine has been painful. Then yesterday my right sided sacroiliac joint got in on the fun. Today, standing is wicked, wicked painful. Back in December 2014, I had a bunch of x-rays, CT scan and an MRI. It showed inflammation in my whole spine and in my left sided sacroiliac joint. One doc did an HLA-B27 test because the hospital folks thought I might have ankylosing spondylitis. That blood test was negative. One doc said it didn’t matter what the test said, the other said it did. I eventually got better and everyone forgot about it. Sigh….here we go again….
I have 4 doc appointments scheduled for next week 😦 And I am still waiting to hear from the diabetes educator. I have to go to insulin pump class for hours. Of course the myasthenia gravis stuff just keeps getting worse and worse. 2 more weeks until I see the new neuro. This all feels like the little Dutch boy trying to keep back the ocean. My body has too many holes to plug all the leaks. The life is draining out of me faster than I can keep up with.
I did some of the online insulin pump classes. It wore me out to learn how to put in batteries, set date and time, set alerts and learn to lock the keyboard. TONS more to learn and no attention span for slogging through it. And speaking of attention…reading anything is difficult. I do better with a backlit computer screen than real books. I am trying to read Visions From Beyond the Veil, but my double and blurry vision makes it really, really hard. And comprehension? What’s that? I feel lost in a fog. Ugh…my brain and body are not cooperating.
I have been having several head episodes followed by numbness and tingling every day. Feels relentless. Also seems to make the MG worse….cumulatively worse. My blood sugar depends on how fast or slow my guts are moving. It’s tough guessing how much insulin I need each day. What I really hate is the pressure in my head. That causes the back of my head to swell. When I raise an arm or two I almost faint, I feel sick and my head makes those waaaoooo….waaaoooo….waaaoooo sounds that drown out all other sound. And how come everytime I eat, my hands and feet swell waaaaaay up? It doesn’t help that my feet are on the ottoman. I think my dysautonomia is just being perverse.
When I came home from the pharmacy, the mail lady was here. We were all talking by the mailboxes. All of us have the same sort of symptoms….or some variation of them. I think this building is toxic. Quite a few of the apartments are full of mold and there is no ventilation system. The ambulances are here day and night.
Charlie Brown is right.
My chest never seems to stop hurting any more. My heart beats all wrong and that makes me even weaker. Seems like my body is non-stop quivering, too. It gets exhausting. I try to distract my brain by listening to good music at full blast. Once in a while I have enough strength to sing a little. That should keep people away from my window! 🙂
Every bit of happiness is a good thing 🙂