Tomorrow I will have the first treatment with IV fluids and taking the 50,000 vitamin D pill with it. This will be done in the hospital treatment area. Given I have no idea what that mega pill will do to me as a few hundred units of vit D used to make me dry and weak as if I had taken a benedryl. Made me so dry I would have increased Sjogrens symptoms which do include mouth so dry my lips stick to lips and eyelids so dry they drag in a slow uncomfortable way across my eyes. And thats the easy part. When my lungs get that dry it affects my breathing. It becomes harder.

Right now I am more scared to not do it than to do it. The pain is back worse and I am having the dark thoughts again and my daughter and I had words. It was really bad. They have no time for me to be this sick. I have to try this to get healthier as heaven knows the docs arent doing enough. What is going on with the myositis scares me. The recent neuro attempting to consider it a migrain was so so frustrating. If I had gone that day it a higher level of agony and made that my priority raether than talking sensibly would it have helped. With my records having the somatic and dissmissive junk in it to go and cry cause I am that bad it something I avoid like the plague. This time it may have backfired. He even has my daughter my wanting me to try the darn verapamil just because I told her I discovered it was not only constipating which is all he told me so I would use it for mestinon bowel issues but it is used for migraines. "Take it for sh*** and giggles" she said to me yesterday.

Anyway if I end up sicker just wanted you all to know you all have meant alot to me. Part of me believes this is gonna work. Maybe not flawlessly but that is ok. My spirit needs me to be better, to have something work.

Annie59

positive thoughts are sent your way Annie59 always BELIEVE THATS WHAT WE ALL HAVE.

Annie,
Sending GOODthoughts your way!!!
Rachel

I am home. It is interesting that I am working to be cynical about what has happened because I cant allow myself to be hurt again by noticing that things actually are so far so good with the vitamin D mega dose. I went to hospital in unusually worse shape and practically skipped out!

Now this isnt from the vit D but from the IV fluids. I was dryer than usual that morning which left me not with dry mouth when I woke but also chunk weaker and breathing down. I'd drank plenty of water the day before, extra intentionally. What I discovered was the steroid pill I had started had started to 'dry me out'. I get get this dry from drugs that make sense like benedryl and ones that don't. My feeling is that my body has something not yet diagnosed that causes this. I cant drink enough myself to counter this. I sure I have tried over the year since it started.

I was already dry by alot and was very affected before I even took the vitamin D pill that I knew would do that. When I came in I could hardly talk cause my breathing was down that much even with my mestinon (would have been even worse without mestinon). I was as weak as I should have been at 5PM not noon. That is what happens when I get dry from a drug. I cant say if I am clinically dehydrated. He ordered a basic blood test to be done before the fluids. I wonder if he should order one after?

About 30mn into the fluids, maybe half a litre I felt a shift. As the rest of the bag went in me I felt my breathing and ability to talk ease so I was able to chat with my duaghter. I want to feel like that eveyday!! The fluids energize me. This is how this began in that my daughter remarked to my Endo that she would see a change in me after fluids if I was at ER or hosp.

I get 3 months of this every week. I am already thinking I will miss this so when it stops as that is the amount of the vit D pills 50,000 prescription. Of course I am very interested in how much this way affects my vitamin D levels. When I am up in the 50's and 60's I am in real good shape.

Annie59

glad things are going so well for you

I am glad this treatment helped, you deserve it.