I haven't been on the forum long enough, and I haven't lived with the disease long enough to have the perspective that many of you have. But, what I've gained already is a better "realistic" view of the disease. I think that until recently, I was still in denial and telling myself I would soon be back to "normal." I remember saying after my diagnosis that "now I can go on offense" and lick this monster because now we know what it is. I'm still on defense as you all know. I don't think you ever get off defense. WG always has the ball--the whole game. It has been nearly a year since my first noticeable symptom and five months since my diagnosis and first treatment (MTX) which didn't work. In just this short time, I've already been up and down the roller coaster of hope and despair, and experienced many of the symptoms you all talk about without even knowing if they were part of the disease, side effects of the medicine, or just a coincidental simultaneous occurrence--of which I've had several. (thyroid tumor/thyroidectomy in Nov. for example) I now accept that I am going to have WG for the rest of my life whether I'm in remission or not, and that relapse is almost certainly inevitable. I'm not putting my life on hold anymore "until I get well." I'm going to do as much as I can, and enjoy as many days as the Creator gives me to the fullest extent possible. Even parts of days if that is all that is available. If the RTX I'm taking now works, I will rejoice and be thankful for the blessing as long as it lasts, but I'm not taking my health for granted ever again whether I'm in remission or not, and one hard lesson I've already learned from being the invalid in the family is empathy for others who are ill. I was rarely ill until this struck and come from a family where illness is viewed as a defect or weakness. You can see yourself end up on the "mark down" table pretty quickly even if no one is admitting it. I do have a supportive spouse, thankfully, but I see the stress it is adding to her life, not just taking care of me, and not just secretly worrying about her own security and future, but from caring and not being able to do much to change things. We all want to feel like we can change things, and WG is very good at making you feel helpless in this department.
Sangye, thanks for starting this thread. Thanks for all the good advice as well. And thanks to those of you who have already given me more info in a month than I was able to gather on my own during the last year.
J. Mike Milliorn, Santo Texas
Diagnosed Jan. 2011
at the Cleveland Clinic
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