... the disease is out of my body.
I think. Is it an accurate assessment of the CK reading to say that if CK's are normal, the disease is not in my muscles doing the destruction that leads to the dumping of CK's into my bloodstream? If so, then rock on. My CK's measured at 64 this week. I have 2 thoughts related to this measurement:
1) Sweet. I feel pure somehow, more authentic. The disease is some kind of unwelcome houseguest in my body, and I want it gone. I'm building myself up, rather than fighting something that's tearing me down. I also appreciate the feedback that I really am doing well with this... it's hard for me to tell sometimes because the physical damage is so great and I still feel nowhere near normal or healthy.
2) The last sentence of that thought segues into the next about the 64 reading, which I discussed in my last post. If the disease is out for now, then what can I expect to experience physically? I still feel very dysfunctional. I still have alot of lingering symptoms that I would love to get rid of. Why? After the disease is stable and we successfully keep it in remission, and I work my tail off to regain strength and function, what if I still feel like this? I feel like I'm not as excited as I should be. Kind of like a "is that all there is" feeling after Christmas or something. Hm.
I do know that the CK enzyme levels can go right back up at any time, if the drugs stop working or if the disease triggers again. That's autoimmune for you. Perhaps that's another reason that I'm not ecstatic about a normal reading. It will mean much more if it stays stable for the long term. This is an instance where I have read too many horror stories to really feel comfortable yet... others have posted that they worked for years to get the CK's into "remission", and then 3 months later they're right back where they started and have to go through the whole thing again. I'm still on some pretty heavy doses of Prednisone and Methotrexate as well... nothing's getting back into this body for now, but I know that it will be a precarious situation as I try to come down from the drugs. So, 64 is good for now. Gotta keep it there for a long, long time. Can't start celebrating at mile 2.
My doc told me that the ck levels dont always mean remission and some people have low or normal ck levels and are very sick still. I had low ck levels and didnt get that feeling i expected but its cuz the damage was already done 2 my muscles it took a short while do do the damage but its gonna take a long time to recover.Hopefully ur ck will stay down. Good luck! :)
ReplyDeleteYes, I think the term "remission" isn't as cut-and-dry in the case of autoimmune diseases because they never really leave you... as opposed to cancers, where they are either present or absent. Here, the disease is latent, just more or less active and the effects will come and go as the disease wills them. This is where I was deluded at the beginning... I had hoped that there was a definitive "recovery", kind of like a light switch that would turn off when the disease was gone. The reality of chronic disease is a sobering battle that has to be addressed every day... we will never get to the "end" of the journey or have closure with it.
ReplyDelete