About a year ago I discovered The Raynaud's Association. I was desperate for personal stories that would help me to figure out how to help Emily. At this point, the Raynaud's was the worst. Her arthritis was held in check with Enbrel, and it was before the Dermatomyositis kicked in. This was the time for her Raynaud's to really make a spectacle of itself. At this point, she couldn't go to a pool- even a heated pool- without turning purple and being in much more pain that before. She couldn't wear dresses or skirts. She had to keep mittens with her, and heating pads, constantly. This was a truly difficult time, trying to figure out how to prevent her from getting frostbite at school again and other such things.
I had started to really get into blogging at this point. I wanted to write to them after seeing that they were looking for creative ideas on how to cope with the condition. I was also hoping that we could help some with my husband's rice sock idea. And that some people would understand because they had been in our position, and would perhaps reach out and tell us how they coped. Well, much has changed since then. Raynaud's has been on the back burner since our new rheumy gave us Procardia. I had begged our old rheumy for a calcium channel blocker but he didn't think a little frostbite could hurt, I guess. He said it wasn't necessary. Well, 2 nurse practitioners and 2 other rheumy's think he was wrong! They have her Raynaud's written up as "Significant"... and they didn't even see a flare, though I did show them cell phone pics. They said they didn't need the pics because they could see it in her hands from a mile away.
Anyway, the whole point to this? My story turned up in the Raynaud's Association's newsletter! I actually got the link last month, but we were so busy then getting ready for our Make A Wish trip that I forgot about it. I got a Twitter text tonight with the link for the current edition, & I actually remembered to go back.
Also, I found out that a chiropractor 2 minutes away sells BioFreeze. We truly love that stuff, so I went over to go buy some for our elbows & pulled muscles, etc. Being a Sunday, the doc was in but had no staff. We got talking quite a bit about nutrition, inflammation triggers, other autoimmunes such as Celiac's disease, and gluten sensitivities. I haven't had a chance to check these out yet, but he told me to look up PubMed, where posted articles are peer reviewed, and also Deflame, Your resource for reducing inflammation and pain with diet and nutritional supplementation. Again, I haven't had a chance to check either page out except to grab the links, but I accept the possibility that they could hold great value. :) It's certainly worth looking into the Deflame diet. I could use some inflammation control myself for my Rosacea. It sure couldn't hurt!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Tuesday, June 14, 2011
Sharing Em's Raynaud's story
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I just found your blog through internet searching. My three year old son has JRA. I just wanted to encourage you to look into diet because we have seen huge success with changing our diet. We have been on the GAPS diet for almost a year and my son rarely has flare ups. He wasn't able to walk before we put him on the diet. He is still on a small dose of methotrexate, but the GAPS diet has changed our life!ReplyDelete