Good news from the docs this week. The uveitis in my right eye is completely gone and is minimal in my left. There are no signs of sarcoid in my brain. No signs of sarcoid in my lungs. They are still treating everything as though it is sarcoid, however. I can decrease steroids by half again, but it was reiterated that it is the methotrexate that is keeping the inflammation and bleeding at bay and I may have to be on some sort of steroid/antimetabolite medication for years.
As much as this is good news, it also makes things complicated in that I don’t have the clear cut “this is what is wrong with you”. I’m actually carrying the diagnosis “idiopathic uveitis, presumed occular sarcoidosis”. Makes it complicated when trying to justify why I can’t work and when looking into other means of sustaining myself and my family.
I usually see life in shades of gray. But this is one thing I wish was clear cut. Either I have “xyz” disease or I don’t. Either you have a cause for it or you don’t. This is what is frustrating me. And I have been the bearer of this news to patients before, the whole “the human body is a mystery, we don’t know why certain things happen, each person is an individual” speech. I hate to be the recipient of such a speech.
So this week I felt better from the methotrexate by Wednesday. Hopefully next week it will be by Tuesday. I will have some decisions to make regarding my occupation. Although I no longer work in a hospital, my current job is still very demanding and stressful. It requires a lot of long hours past 8-5 Monday through Friday. I have some thinking to do.
Here is hoping that my weekly dose of poison is nice to me tonight!!
true life is stranger than fiction.. 