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My life in 7 points

Friday, September 26, 2014

I have a lot to say....since almost a whole month has gone by since I last did much of anything on Spark's site. Here's a quick summary:
1) My book is now being printed. I should receive my first box of books any day now.
2) My weight has been fluctuating back and forth over the same five pounds. However that whole "range" is five pounds lower than it was before. Which means I've lost anywhere from 5-10 pounds. But I'm frustrated because I'm so STUCK.
3) I was temporarily involved with a different support group for AI (autoimmune diseases) I got "burned" because some of the people are very much "know it all" and can be curt and kind of nasty if you say something they don't like.....So I learned my lesson and am coming back to the best AI forum on the web. The One right here at Spark (Living with RAD)
4) My liver enzymes were shooting up so the doc took me off of all my meds and put me on an oral biologic which is just for PsA....not for any of the other RADs I have. It seems not to be helping but he said I have to give it three months. So far it's been a little more than one month.
5) I have to go to a neurologist because my husband suspects I have RSD/CRPS which is a disease that is EXTREMELY painful involving numbness , furious itching, sensitivity to touch all in one area that had undergone some trauma to the nervous system. My area is my right thigh and that is pursuant to hip replacement surgery.

Of course when I read up on this disease, it is HIGHLY prevalent amongst people with RAD and inflammatory disease such as asthma (both of which I have) I'm not going to get all freaked out ....I may have something else, who knows.

6) I have not been tracking my food. I eat out way too much but I always bring home half of the meal and often skip dinner (or lunch depending on when I ate out) and I will eat the meal the next day. I am making some real progress about not eating at night. I don't know why or how but I'm not goign to look a gift horse in the mouth.

7) I feel terrible for not being present as a team leader. I promise to try to do better from here on in. You guys (ladies) are the best!!
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Member Comments About This Blog Post
    Congrats on the book. How exciting!

    When I started Humira it took a good 3 months to start working but has been enormously helpful, so it can take that long for meds or biologics to work.

    Hey, you've avoided going into the hospital for breathing issues, right? That's a good thing. I'm on another prednisone taper now.

    As always, you are in my prayers. I'm sorry you have so much pain and other nerve symptoms. Hope you find help or relief somehow. I just bought C. S. Lewis' book "The Problem of Pain" but haven't read it yet.

    God bless you and keep you.
    2185 days ago
  • _LINDA
    You have to look after your own needs first. All Autoimmune disease sufferers understand this. So very sorry to hear you may have yet another nasty thing piled on top of your already overflowing plate :-(( It is best to rule out anything though. Three months before you may see some results from this medication?? Seems way too slow for a biologic to start showing results..
    Maintenance is good when you are dealing with these troublesome issues. Some of us can't even maintain when the going gets tough :-/ Keep on going, you are doing great!
    Congratulations on your book! Best of luck with sales for it.
    {{{gentle one armed hugs}}}
    2186 days ago
    i applaud you for continuing to push forward....keep up the great work! emoticon
    2186 days ago
  • no profile photo CD10895053
    You are one of the very best on our RAD team and we just love you! I hope that the itchy area that you have can be remedied normally and that it's not another disease added to your list of troubles. I'm rooting for you in all areas and good job on weighing less, no matter how much it bumps around, it's bumping on the minus side so that's awesome. Mine lately is bumping on the plus side which I hope to turn around real soon! I have this bum right knee that more than likely will have to be replaced sooner than later the Ortho. says. Ugh! Hugs to you, Karen
    2186 days ago
    I hope you find relief for all that is affecting you. emoticon
    2186 days ago
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