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SariHope: CREST Scleroderma and Sjogren's Syndrome

I will spend the rest of my life fighting and talking to all the ignorant strangers who approach me daily to make the world a warmer place for those of us who are cold!

Nine years ago, at age forty, I was diagnosed with Raynaud's. This was in January, during a very cold Florida winter which was breaking records

I was working at an engineering company sealing blueprints for building and zoning submittals, only to come home after work with blue fingers. At first I thought it was the the dye in the ink from the blueprints on my fingertips, but I also noticed that my hair was falling out and I was losing weight as well. At this time I was also going through a divorce and working long, hard days as well as attending to my two children's needs. When I came home that night nine years ago to find my toes blue also, I knew my life would never be the same.

The next day after I showed my boss my fingers and toes, he sent me to my primary doctor who in turn sent me to a vascular specialist who confirmed in two days after blood tests that I had Raynaud's. I was put on steroids for a week as my fingers and toes were close to gangrene and amputation without circulation! After a week on steroids I was an emotional mess. I was then given the choice to spend the rest of my life on steroids which drove me crazy or be treated as having angina and be a heart patient, although my heart was well. I chose the blood thinners. My doctor and heart specialist still did not tell me about scleroderma.

During those first few years after being diagnosed with Raynaud's, I had to go to the grocery store with gloves on to reach into the frozen freezer. I would tell curious people who came up to me to inquire why I wore gloves in south Florida in the supermarkets that I was a burn victim and not to play with matches.

As the years went on the symptoms progressed to CREST Scleroderma and other effects of the illness. I have lost the ability to make saliva in my mouth and to make tears in my eyes. I am a patient of the Bascom Palmer Eye Institute in Miami, Florida, where they put punctal plugs into my tear ducts to make tears to cry. It was like having sprinklers inserted into my eyes for watering. But, then they took them out and lasered my tear ducts closed in each eye to make the tears come. The worst part was smelling the flesh of my eyes being burnt as they were closed off.

I have lost nine teeth in the nine years because of the dry mouth problems and eat smaller meals because my esophagus is scarred because of reflux. The newest issue is that I tend to bleed from the slightest scratch for hours.

I recently attended dinner with family and friends and had ordered Florida stone crabs. The crabs were served cracked open, but somehow I caught my hand on the shell and started to bleed all over the table. I bled through the linen napkins and through several bandages as well. I have been taken off the blood thinners for awhile because my family is afraid that if I ever got into an accident that I might bleed to death.The doctors did not tell me about all these side effects, since each patient reacts to the illness differently.

But, now I can only laugh and be positive and proud to be able to talk openly about scleroderma. Living in Florida and with the constant air conditioning in all buildings, I have an amazing winter wardrobe. Everyone who knows me, knows that I love gloves as a perfect gift and would love to have matching socks as well for my feet.

Now when people ask me if I am cold, with my winter clothes and gloves on in the summer of south Florida, I smile and tell them all about Raynaud's and scleroderma.

I am an advocate now, and last year I took on a diagnostic laboratoroy that was not calibrating ANA test correctly for nuclear antibodies in blood, which I now have as well. Through my persistence, I had them send my blood to Atlanta as they kept saying it was negative for ANA. I was actually getting worse and could not accept the negative results. I pursued and the laboratory had to notify the state of Florida of this revision and change their forms and calibrations.

Now I take blood thinners, saliva pills, antacids, and pain pills. I have worked all these years up until the last two months because of downsizing and the bad economy. No one else in my family has any of these health problems and since my middle name is Hope, I use my whole name, SariHope. I feel I was given this quirk or illness to raise the love and awareness of this autoimmune disease to the world. Bob Saget wrote the movie For Hope about scleroderma, and I will spend the rest of my life fighting and talking to all the ignorant strangers who approach me daily to make the world a 'warmer' place for those of us who are cold!

I am blessed with wonderful friends and family, and an amazingly positive attitude, but I have no significant other. The sad thing is that men get scared when they find out that I have this and they think I am going to die. I do not regret anything as I am blessed with so much more medical and spiritual awareness than most average people and have a great appreciation for the love of life.

My specialist just asked me last week if I was going into politics! Living daily with this and achieving so much appreciation of what most healthy folks miss and a very strong determination to change the American health care issues that we all are faced with. I can only end this story with the fact that I have scleroderma, and it will never go away.

Good luck to all of us! Shalom!

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.