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Sunday, September 2, 2012

Me & my big mouth

It's been a while since I posted anything, you know, when you have a chronic illness & you feel good you take FULL ADVANTAGE of it! I have felt great lately. I wouldn't say "normal" but for me, really good.

This weekend is my 7 year anniversary with CIDP, (I really should have celebrated with a new tattoo, maybe next month I will.) it's been a LONG 7 years but if I sit down & add everything up I'm better for it. I may have missed the opportunity of a lifetime when I got sick, but maybe, I dodged a bullet! We will never know (well, I might, but I'm not saying, I've got to learn to keep my mouth shut sometimes!)

In the last 7 years I have learned that I don't have to be perfect. At least not "society" perfect, I am however ME perfect. No one else could be a better me, I know that sounds a bit conceited but it's true. No one else could pull of my unique personality, my quirks, my smartass mouth, my loyalty, my support for those that I love, my friends tell me I have great legs so no one else can make my tree trunk legs look good! lol the list goes on... A friend even told me the other day that no one could compare to me. Sadly girls, he is married to someone else, but he will always be my best guy friend & 1 of 4 BFF's in general. He is 1 of the 6 people I trust completely. He is one of those friends that you can be completely comfortable with & even if you get mad at him you still love him. Again, yes, he's married, we're only friends.

He is the one friend I have never talked about in any post. I'll just call him "Red". Red was a big help to me when I first got sick. (I don't think he realizes this is the anniversary weekend my life went to hell, but that's what has made me talk about him now) He called me a lot the first year or so. Anyway, he always made me laugh even on my bad days. I would have a nurse dial his # & position the phone so I could talk to him at 3AM. He never complained about it, well not to me anyway. He is also friends with my brother so he could have complained to him. I don't know if he reads these posts but if he does I want him to know that even though I have trouble saying how I feel & that meanings get lost in text messages. I want him to know that no matter what I love him as my BFF. I know he is married & I would never do anything to harm that relationship...ever. But I also feel really good right now & I want to have fun while I can. So don't worry about me, I'm doing just fine with our friendship just as it is.

So back to my point earlier. I have been off cyclosporine for a year or so now and off the cellcept for about 6 months & my BP has returned to normal. Even on IVIG days it runs around 130/80 & lower the rest of the time. I am able to be more active now. Still not where I was but that's ok, I am where I am & it's a good place. I still have pain & it gets worse as my IV schedule comes due. Like now, my IVIG is scheduled for Tuesday & my hands are starting to burn from typing & my hips, shoulders & neck hurt. My hips have been hurting since Friday & I can't wait for my "liquid gold" I'll feel better again by Friday. Which is good because I have plans to go out of town for a few days in a couple of weeks.

Oh I almost forgot, I found this fabulous new quote in a book I'm reading
"What nourishes me, destroys me"
Isn't that applicable in so many aspects of life

Always believe in the magic of life

Till next time, stay safe