I came across a new (to me) blog today. While everything written seems pretty accurate, I'm not sure it goes far enough. Like pointing out that many Cushies present with very few of these symptoms. I wonder what would be written about the testing procedure. Wonder if I should make a comment.
I've been taking my B12 regularly for a month or so now. It's a little weird taking it nasally. I feel like I need to blow my nose for a long time afterward. Since I don't know how long it takes to absorb, I really want to avoid that. So I've started taking it right before I go to bed. The only problem I find with it is that it is designed to take weekly. This isn't just doctor's orders. I find that it wears off in a about 3 - 4 days. I really don't know if the doctor can prescribe more. I'm guessing not, or at least insurance wouldn't pay for more. But I will be asking when I see Dr. J in Feb.
All that to say that taking my B12 helps me cope so much better with the rest of the family having Cushing's. It lifts the depression quite a bit. Well, I would suppose that the lack of B12 causes most of the depression, so of course taking some would help. The last few days while waiting to take another dose, I am so down and sure that my family will never be cured. I tend to cry every time I think of it. But get a dose of B12 in me and I have hope again. The dread I feel upon awakening is not near as bad either. And a lot of my joint stiffness/pain seems to go away. I would love to take this about every three days, at least until things are resolved about what will happen for J,J &B. I think I could cope with depression a few days every week if there wasn't such BIG things hanging over our heads.
After church today I was visiting with one of Jess' (former) middle school teachers. Everyone always asks how things stand now. Standard answer for a long time now "the same." Todd said I bet that has you praying a lot for patience. Hmm, you know that makes me feel kind of silly. I pray for a lot of things pertaining to our situation, and patience has never been on the list. I need to remedy that.
When I think about it, Todd and his family sitting quite that close to the front isn't normal, they have two small children and tend to stay closer to the back. Today they shared the second pew with us. He must of been meant to bring that to my attention.
So while we're waiting for a plan of action I will pray for patience.
I'm going to have J&J do some more testing. I have a phone appointment with Dr. F set up in late March. In case he would agree to a BLA but want them to have more highs under their belt, I'd like to already have that in place. I decided that after talking with a few people that were looking towards a BLA after a recurrence.
I'm so thankful there are others around for guidance. I've been pretty quiet on the boards lately but have had a few people contact me for help and at the moment I'm more comfortable with that. I think not wanting to talk on the boards goes along with wanting to turn into a hermit at the moment.
Of course the hermit emerges soon after that B12 dose!