Each Sunday morning, I fill up my weekly pill box. When I got to the Medrol from the bottle, I realized why I felt so bad Friday and Saturday. I have only been taking one pill and not two! I knew enough to take 4 of the 4 mg pills from the Medrol dose pack, but forgot the pharmacist said there were no 16 mg pills available, so I needed to take 2 each of the 8 mg pills in the bottle. Ohhhhhhhhhh……duh!!!!!!!!!!!! I got confused because of the Plaquenil…but that’s a long story. Sigh…

I woke up every 2 hours all night long, as is my usual now. Each time my left eye was bone dry and my left arm was totally numb. I took a shower and my arm was still numb. I have been sitting here for an hour and you guessed it…still numb. Feels creepy. My lungs are still on fire today. I hope I really and truly feel better when the correct dose of steroids gets in my system. Ugh.


It was nice to wake up to a Mother’s Day email from my daughter 🙂 She and her family are in their Shanghai, China apartment now. The very white being at the bottom middle of the pic is their dog….who got shipped to China by way of Hong Kong. It’s nice that although people are packed like sardines into tall buildings….there seems to be a good amount of greenery around the city.

My daughter wrote about getting in a taxi and trying to give directions and buy food…when you don’t speak Mandarin, are tired and pregnant and have 2 young boys with you. Yikes! Quite an adventure to move to a new place with a new language and new-to-you everything.

When it’s 2:30 in the afternoon here on a Sunday, it’s 4:30 AM on a Monday in Shanghai. The grandsons have a lot of adjusting to do. I’m all messed up when I drive quickly across the US or have to deal with the stupid daylight savings time while sitting still. I wonder how long it takes to change your internal clock when there’s such a big difference?

My clock is in perpetual flux. I just napped 3 hours and am still tired. And my arm is still numb and tingly 😦 I wish I could just get IVIg and quit screwing around. I don’t know what to believe about my health. The CNP seemed to think the last neurologist was right about the combo of MG, CIDP and MS. How much torture do I need to endure before getting the correct treatment? I am stacking up a long list of ailments all treated by getting IVIg infusions….yet it’s not in the taxpayer’s interest to give them to me. The longer I have been awake, the number my arm is getting. The numbness causes prickles and itching on my whole left side. I feel yucky.

It’s the kind of day I feel lucky to plow through, hoping the next one is better. The weather is low 50’s, very dark, very damp and very dreary. Monday we are supposed to have 70’s and sun. That should help!