Daina

My name is Daina. Had Raynaud's since early childhood along with other symptoms. My parents chalked it up to not eating right or dressing accordingly. Life went on...

The development of severe finger ulcers w/ blueness pain, swelling, along w/ esophogeal problems sent me to the doctors. Having to go outside insurance, to a second rheumatologist, I was finally diagnosed sixteen and a half years ago. I'm thirty one. I've dealt with the many of the same or similiar challenges as those people posting here and elsewhere.

In 1991, I landed in the hospital: physical rehabilitation wing, due to rapid progression of SD. I had lost so much weight. At five foot six, I weighed only 103 pounds. I could barely stand,hardly walk, let alone get up from a chair. I thought the rest of my life was going to be lived in a wheel chair. I had to sell my '79 MGB convertible because I could no longer handle a manual transmission or get out of it on my own. I began looking at mini vans because I thought in time, they would be the most "practical" vehicle for me. With a month of intensive and very painful physical and occupational therapy, I fought long and hard to recover. It wasn't easy then and even today, I work hard to keep going.

Since then: I now drive a Chrysler Lebaron convertible ( once you've owned a convertible you'll never drive anything else. That top comes off... and sets your spirits sailing with the wind and sun! ). In 1994, I met the man that is now my husband. I work part-time when I can. I ride a recumbant stationary bike at least three times a week for twenty to thirty minutes at a time. I'll go for walks no matter how slow I'm moving. Heck, this story was typed using two pencils, one in each hand, eraser ends to the keyboard. My version of two fingered pecking!

SD can scare you, bring you down and haunt you. It never really goes away. It is with you, your shadow. Only your shadow, because your spirit, hope & inner light are with you. Do what it takes, cling to hope, it will see you through... and get the necessary help you need.

I recently moved to the Connecticut area. This is my second move since '95. I previously lived in Colorado and before then, Washington state. I founded the Central Seattle support group and cofounded the Evergreen chapter of the USF. In Colorado, I was ever so thankful for the Front Range chapter of the USF and those involved with it- Rita Perez, Mary Webb and Pat. They eased the loneliness that comes from the loss that a move can bring on. Most of my friends and all of my family live in Washington.

Here I am, once again, yearning for friendships and up close and personal support. There are SD patients here in Connecticut but, no support groups (So the doctors I see tell me this). I very much want to meet you & hopefully develop a friendship. It would be great to get together and DO something with another that would understand the challenges outings (cold movie theaters, restaurants, food falling from your mouth while you eat, walking slow, etc.) bring on.

I'm loving the online support so PLEASE contact me! I'd like to have others with which to laugh, cry, share and commiserate with. Thank you so much.

Email Daina at: dinasaur@ix.netcom.com

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