I have missed sharing stories and thoughts here. Since I started the new treatements about a month ago alot has changed. I started 3 weeks ago yesterday with my new neuros order of weekly 2 bags of IV fluids with the 50,ooo unit vitamin D presciption pill. I had gone on steroids just prior to that for my myositis. After getting a fresh prescription for the steroids and morphine ( 10 15mg pill per month) from my family doc I felt some relief. I was too sick and beaten down to try to fight the politcal mess at the university that had left my myositis get so bad my whole head and neck were involved. I knew the next level of treatment from them was steroids so getting them locally was a life saver. The myositis pain had me in a bad bad place. Having the morphine till the steroids kicked saved me. I couldnt take that level of pain much longer.

I had my 3rd vitamin D pill and fluids Friday. I am seeing some familar and some not from the vitamin D increase. Doing the steroid at the same time is hard but necessary. Early on I noticed when I went up to 10mg of steroid per day my strength went some and my breathing was more consistantly good. It didnt last tho as I had to reduce dosage.

The steroid pill is adding to the dry caused by the vitamin D that is trying to be countered my the fluids. I suspect it is something inactive in the pill not the steroid itself. There was one brand of generic mestinon that did this to me. The dry is not just simple dry mouth. It affects strongly every orafice and even leaves me weaker as if I havent drank enough. After these past weeks I have learned that If I got fluids mid week again I think I would be OK. Or if I was off the steroids which isnt posssible.

I have interesting things go on when I get the fluids. Generally I breath better and I get some stronger. But the dry out makes it harder for me to see by far and that is where I am at today. It has been a roller coaster because of the side effects, after affects trying to drink and salt and try to get the fluids to stay in my body like the IV fluids do better.

I got to babaysit for 2 hours yesterday for my 2 year old granddaughter and her sister 8. This is the first babysitting in over a year as I had been much worse. AND today I actually made it too the young ones birthday party! That even shocked me. 2 days in a row of more than me holding dwon my couch!

I do have a raw hand developing from something. Not sure. I will watch it closer now that I know I am beyond just worse dry skin.

I have been thinking of you all and wanting to check in but the body wasnt cooperating. I was lost in a lot of adjustment on multiple levels.

Annie59