Today is Monday, April 5th. This is going to be a hard one to write; It seems that my Guillain-Barre was not as simple to treat as we thought. I noticed I have been getting weaker. I noticed it because 1) it has been getting harder to stand up and 2) I am falling down. Then today, 'in physical therapy, I couldn"t do many of the exercises I did on Friday, 2 days ago. That is a pretty dramatic change.
We just got back from visiting a neurologist in Cincinnati. His diagnosis is that my muscles are still fine, although weak, but something is again preventing the nerves from sending the messages. He suggested I resume IVIg treatments and get back with him in 3 weeks. He now believes that what I have is chronic, not acute. I had to ask for clarity-chronic means long term.
I have traded my cane for a walker (and made a few other accommodations) and now I am waiting to hear from the hospital about resuming my IVIg.
I am scared. This seems like it could be a big deal. I was scared before-every time I had to stand up. Now I am just plain scared.
Evidently, what I have is known as CIDP. That stands for Chronic Inflammatory Demyelinating Polyneuropathy. At this point we are not sure what that means exactly for me. The mechanism is the same; my body's immune system is again attacking my nerves. Returning to the life I had a month ago seems to be farther away now. The doctor suggested I begin to think about a life where wheel cahirs and motorized carts were part of my life to help me travel, work, etc. The thought of having that sort of life is totally alien to me. I recoil in denial, "I'm not that guy!"
And yet, I could be. I wish I knew what waiting for me, but I realize that would probably be a waisted wish. CIDP has many different forms. In fact, it wouldn't be unheard of to have a totally unique form that no one else has. A quick look on the Internet showed me many different varieties. It could go away on its own or deepen inside me, causing many different sorts of treatments.
It is now 7 am on Tuesday. I just have this day. Please God, take away my fear and allow me to do Your will today.
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ReplyDeleteSo sorry to hear this and feeling sad with you. How dark and scary. Its disturbing to think about our bodies turning against us.
ReplyDeleteWe think of Psalm 23 as a funeral verse usually. I have come to appreciate it when I am in times such as these--that feel like 'the shadow of the valley of death'. I like to meditate on it and imagine myself walking in a garden with Jesus.
I am really sorry to hear this. I can imagine how scared you must be feeling. It's hard to know what to say. While I'm not a doctor, I do know from experience that in this territory, often Dr's and specialists can't often give clear answers. Much of it goes into their "just not sure" basket also. It's true, as you say, no one case or person seems to be exactly the same. I hope and pray for your sake that this is just one area of "thought" for your doctors at the moment and that over time it won't turn out to be the final "set in stone" prognosis for you. My thoughts are with you.
ReplyDeleteThanks to you all for comments. They mean so much to me.
ReplyDeleteWe'll just have to wait and see what tomorrow brings...
Hi Michael, This sounds so scary for you. And frankly, a pain in the ass.
ReplyDeleteI just hope this time will pass so you can get to the point that you can look back and be glad you are through the worst of it. That is the simplified version of medical problems.
Let me know if there is something you need or want that I may be able to help with.