I went to bed early last night. My head and neck were in screaming pain 😦 I was supposed to get up at 2 AM for meds, but didn’t. Around 4 AM, Olive woke me up by poking at my mask and CPAP tubing until I opened my eyes. She was very persistent. The first thing I noticed was that I was sleeping with my arms above my head, like a baby. Over the years I have come to understand that I do that to breathe easier.

Ow! My neck, head and back are still in intense pain. My body is so not amused to be off Medrol. The only relief while awake is to lean way forward and tuck my chin to my chest. That stops the pain for a whole second. I also woke up with my face hugely swollen. I look like a very different person today.

I took a much longer shower than usual. I hooked the hand held spray over my shoulder and pointed it at the sorest muscles. That helped. While I shower, Olive sits in the bathroom, staring at the shower curtain. When I open it, she meows and leaves. I love the casual way she sashays out, stops to groom herself, then keeps going. It’s as if she’s trying to prove she wasn’t anxiously waiting for me. Snicker….

There has been a stray cat skulking around in the bushes in front of our apartment windows. It must be trying to catch and eat birds. Olive goes NUTS! She gets between the vertical blinds and the window and runs back and forth. Sounds kind of like playing a xylophone. She meows and chatters, then Olive runs to the living room window, and back to the bedroom window. Pretty nifty how she can puff her fur up to look twice as big 🙂 Even after the rest of her fur has smoothed out, she keeps her tail puffed. She meows, jumps up towards me, has me smooth her tail, then does it all over again. Endlessly amusing!

I was the first patient the doc saw today. He was impresssed that I could talk 🙂 I am surprised I still can. My muscles all over the rest of me are a wreck. But gee…..most people can talk! I tend to forget that. He was worried about my swollen face and neck. He felt all over, thinking it might be an infection. Then he decided my face, neck, back pain and swelling is due to lupus. I let out a big, sad sigh. He thinks all my autoimmune diseases are waking up again. He also wishes I was getting regular IVIg.

I love that this guy is both super compassionate and also has a great sense of humor. We talked about docs needing to do tests instead of using their own eyes and brains to figure out what to do. We talked about the lack of treatment plan for me and how frustrating it is to just wait for the insurance company to do things. He decided to put me on another dose pack and see what I look and feel like in 2 weeks. The day after that in 2 weeks, I go back to the neurologist. Before then I need to figure out if I should switch insurance companies. It’s a leap over the abyss….or at least into the dark. Sigh…..what to do? What to do??????

The nice old doc, who is a few weeks younger than me, gave me another hug and kiss. He still thinks I am about the most medically complicated patient ever. I used to like being unique. I am getting tired of it now!

After I left his office, I went shopping. I needed to round out my food supplies with some strawberries, mayo, coconut oil and chocolate syrup. The younger me would be shocked by the old me. I don’t like milk any more. I had some free milk, so bought syrup to make it palatable 🙂 I drink down chocolate milk a lot better than water. I was hoping it might help me be less dehydrated. I still have the darned killer headache 😦

The later it gets tonight, the better I feel, as the Medrol starts working. Yes! I cannot say enough how much yesterday sucked on sooooooooooo many levels. It was a convergence of lots of things going on in my life. I spent a few hours sobbing like I haven’t sobbed in years. I knew it was a stupid thing to do. There were a couple of times I wondered if I was giving myself a heart attack. Crying like that only made my MG worse. Duh. Luckily today was a new day with a clean slate.

It was a beautiful day. I actually enjoyed taking TRAX to Trader Joe’s. I was strong enough to get there and back with minimal drama. Of course, I have been resting up all day after being gone 2 hours for the doc and shopping and traveling to and fro. When the pharmacy guy called my apartment to be let in the building, I felt well enough to STAND UP and talk to him. Right away he commented that I looked stronger and he liked my voice. The pharmacy delivery guys see me looking almost dead to almost normal….but mostly half dead. I told today’s guy that I was cheating on him. The doc’s office I go to nearby gives meds free!

Tuesday I will clean for the annual apartment inspection on Wednesday. It should be at a good point in my meds. I just have to mop all the darned floors. I can tell tomorrow is 2nd floor inspection day. The guy above me has been dragging and thumping things all day. I hear his apartment is stuffed with literally tons of books and papers. Yikes!

It’s almost 11 PM and I still have both windows wide open. The last 2 days Wunderground says my neighborhood high was 78. The next 2 days are forecast to be 75 degrees. Very nice 🙂

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