The puns in the titles of my posts have got to stop! Can't help it, though, I'm a sucker for a good pun...
For those who don't know, Raynaud's Phenomenon is a pesky circulatory problem whereby parts of the body (usually the hands and feet) turn different colors. No, not like Burnt Sienna or other random Crayola Crayon colors! First, skin turns white from diminished blood supply, then skin turns blue from prolonged lack of oxygen, then red when the blood vessels reopen. Rather patriotic, when you think about it. Usually cold temperatures bring on these symptoms, but emotional stress can do it too - if you want to freak someone out who has just upset you, go ahead and turn colors on 'em! Bet it doesn't happen again.
I bring this up because Raynauds has been coming up in conversation more and more (as you've guessed, I'm lots of fun at parties). One of my best friend's sister was recently diagnosed. It often goes hand in hand with autoimmune diseases, but can also occur independently - a long time friend of mine has had it since childhood. Naturally, the cause of Raynauds is unknown.
As for me, yep, I've got it. I had given it very little thought because in the grand scheme of keeping my organs healthy, it wasn't much of a priority. When I wasn't thinking about my organs, my vanity was taking a beating from all the weird skin thickening and red spots. So I guess there just wasn't room for Raynauds!
Though my condition seems to be mild, I've learned that I shouldn't dismiss it. In rare instances, ulcers can form from the continued lack of oxygen and - get this - gangrene can set in! One of the people from the scleroderma chat board reports that she's lost two fingers from it! Holy crap. So, I get that when Tina tells me I should wear gloves more often, she's not messing around.
Takeaway - if I'm coming over to your place for dinner, crank up the heat! Or, seat me by the oven. And, let's all be glad summer's coming!
Friday, March 14, 2008
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7 comments:
Hi,
I just discovered your blog. I am a 43 yo woman, diagnosed with the diffuse form officially May 30, 2007 but had symptoms long before that. I have not read all your entries, but I am just wondering if you have ever tried Cellcept (immunosuppressant)? Fred Wigley of Hopkins put me on 2,000 mg daily last Oct. 31 and it has been like a miracle cure for me. Definitely worth a try if you have not already.
You can email me at lauren.paul@comcast.net if you would like to know more or just chat.
Hi Lauren, I will drop a line. I'm committed to Gleevec for the remainder of the clinical trial, but have heard good things about Cellcept as well.
Take care
Thanks, Kim. The Gleevec trial is very interesting. My doc (Wigley of JH) says that lately Cellcept is the treatment of choice for lung involvement. Something to keep in the back of your mind. Hope you're feeling better!!
Hi Lady, so impressed about the lung capacity!!!! Holy crap I would have to say its working. Well about the Ray (naud) of sunshine - at least there aren't any meeting on the east coast during the winter!!! How was your birthday??? Did you party like a rockstar - hahahah Pat Benatar comes to mind. I hope all else is well - hang in there with all things - miss you lots!
Stephanie
Hey Kim,
Just a quick note to let you know that I do think of you more often then I connect. I am so glad to hear about your lungs!! I can't imagine celebrating lung capacity at 60%...I admire your drive to go back to work and be productive. I'm also very thankful that Matt is in your life. Hmm interesting hand things that you have going on. That "Raynaud" thing is so unusual... Or maybe I just live under a rock. Take care of yourself. I'll be in touch soon.
Kara Munro
Hey Kim,
Just a quick note to let you know that I do think of you more often then I connect. I am so glad to hear about your lungs!! I can't imagine celebrating lung capacity at 60%...I admire your drive to go back to work and be productive. I'm also very thankful that Matt is in your life. Hmm interesting hand things that you have going on. That "Raynaud" thing is so unusual... Or maybe I just live under a rock. Take care of yourself. I'll be in touch soon.
Kara Munro
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