I have alluded to my health several times over the past 4-5 months in the following posts:
I alluded to it, because for many months no one knew what was going on. To give you an idea of how many times I have visited a doctor, imaging center, or lab, I have 90 insurance claims so far this year... Ai-yai-yai! (That's not 90 appointments, because one imaging appointment can produce multiple claims, and my monthly IVIG creates at least two claims per month.)
I spent a lot of the summer in bed, with the children watching Right Now Media. I lost a lot of range of motion in my hands. LG often put my shoes on for me (when shoes still fit on my feet). I made an appointment to get my toenails clipped, because I could not bend my legs. On the worst day (6 days before I saw the rheumatologist for the first time), I wished for a wheelchair, and did not think I could walk. (That is why the Hiking post made the list above! It's miraculous!)
My rheumatologist describes my auto-immune condition as "complex, evolving, rapid onset disease, rare, severe." His current working diagnosis (which could change at any time) is limited systemic sclerosis with myositis and scleroderma. You might not want to google those. ;-)
Basically there is no cure. He treats symptoms and bases that on his monitoring & my self-reporting, as well as labs and imaging. I have labwork done every two weeks that is sent to Mayo.
The first time he saw me (July 30th), he started treating me aggressively with an immune suppressant, which my body has thankfully been able to tolerate. Of course, it depletes other things in my body, so it requires daily medication to restore that plus monthly labs to check that it is not damaging my organs.
The disease itself could damage any or all of my organs at any time as well, so, in his words, "I am constantly checking your organs." And I have had many base line imaging procedures done so he knows how they currently are. So far, so good! Thank you, Lord!
By late September, after an MRI, he started me on high dose prednisone, in order to stop the muscle inflammation which could have led to permanent loss of muscle function. The prednisone comes with plenty of its own risks, so we are just going to spend the rest of my life (barring supernatural healing, which we continue to pray for) managing risk vs. rewards.
As long as I am on prednisone, I am also on an antibiotic to prevent opportunistic lung infection. But, hey! I get to stop my inhaler & nasal spray, since they're superfluous at this high dose of prednisone.
The prednisone has restored my mobility, my energy, and my life! Things are vastly different than they were this summer ... or even in mid-September. We are thankful!!
Our times are truly in His hands, and that is such a comfort. If you prayed, thank you for praying us through the summer. We covet prayer for protection of my organs, continued relief from symptoms, wisdom for the doctor, that we will learn well the things often only learned through trials, and for LG & LM's hearts to cling to Jesus in this.
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