Yesterday I was at the doctor’s office for more than 3 hours. It took exactly that long for the new operating system to download onto my phone on their wifi.
Last night it took a very long time and many tries to upload my blog post. Today nothing works well. The header of emails shows up, but the rest of it wont open for hours, if at all. I got a phone message last night that still won’t let me hear it. The Internet is almost useless. No pages will open. The FB app works at glacial speed, but at least sometimes lets me look at pictures. Most of my FB feed is national parks and different parts of the country that showcase beautiful pictures 🙂 I often hide my friends. Snicker. I repeatedly tell people I am not into most of the social scene. At one time there were over a hundred friend requests pending. I don’t know if they disappear over time or people uncheck the request, but there are only 50 waiting now. I am not a fan of the FB social scene and really don’t understand the appeal. Oooooops! FB rant snuck in there. 😜
That was cool! Just like last night, black clouds came along. A lone white seagull was flying around in front of the clouds, in stark contrast.
I went to the manager today and croaked out enough words to let him know what my doc said. He says if the time comes that I have to leave quickly, I won’t get in trouble for it. I feel better after the talk…my brain, not my body. It wears me out to say much.
I have noticed that most of the men I usually talk to are now spooked by my voice. I think it’s that men want to fix things. I sure feel broken! Grrrrr…..
I was lounging around in my robe when my neighbor knocked. She wanted me to go to FNB with her. I got dressed and off we went.
I have been wrestling with what the internist said all day. Each time I start to feel one way, I argue with myself and flop back the other way. I very much appreciated the talks with my neighbor and the manager. It made it all more real.
I do think my doc was way too optimistic about things magically working out. I don’t like being homeless! I hope whatever happens can be done systematically and deliberately instead of in a rush. I am totally disgusted that politics have put me in this position. Today I learned that in TN and KY, if you are on Medicaid, you can only get 5 prescriptions a month. For people with a chronic or even an intense, acute illness, that’s putting their lives at risk. A woman with MG in one of my support groups ran out of her Mestinon before the month ran out. That can be a life or death thing! I still remember buying each pill by the day in AZ while I waited for authorization. What a nightmare. If that woman got sick from missing her meds, the hospitalization would be in the 10’s of thousands of dollars…all for the want of a few $3 pills. Stupid.
Wow! I just stood up and started talking to Olive. My voice works. No telling for how long, but I hope that proves my doc wrong on one count. He thought my voice was a problem in my cerebellum. I said it’s from MG weakness and lack of air. Both problems can cause the same dysarthria. I don’t need any NEW problems!!! MG weakness is bad enough.
Oh, booger brains! I started choking and now my voice is worse than ever. I am grateful that it can still come and go. It has been messing up for days on end with no break. I like the knowledge that all I need is strength and more air to get better. 😀 I wish I knew how to make that happen without IVIg.
Well, Wednesday is dermatologist day. Someone is finally going to look at the black spot on my leg! You would have thought the rheumatologist, ER doc or internist could have at least looked at it. Nope. Everything requires a specialist. I sure hope it’s nothing creepy.