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Beverly: CREST Scleroderma

Wow! What a mouthful of diseases for one person to handle all at once.

Purple Daisy for Beverly by Sherrill Knaggs, ISN Artist I was born with a cleft palate and a nasal voice. I had two operations, but they were not successful. I still have a nasal voice but talk a little bit better now.

When mom fed me as a baby the milk/formula kept running out of my mouth and it took a long time to feed me. They did not know anything about a cleft palate back in the early 1950s. Now children can get operations at six months and at two years old. They no longer have to go through life being tortured and teased by other children. I was a misfit and felt like I did not belong. I never had any friends and I came home crying daily from school.

In ninth grade I was pulled out of public school and put into private school. While there I was pretty much left alone. I graduated number thirty-two out of thirty-three girls in 1971, but at least I graduated, and now I am a honor student and I am going to finish by BA degree online.

Now I am fifty-one years old and I began experiencing symptoms of asthma and Raynaud's Disease around 1996.

I was going to college, before online courses and degrees were available, and was noticing shortness of breath while going up and down three flights of stairs to my classroom twice daily. I noticed that my fingers and toes were getting colder, turning white, then blue, and finally turning numb, especially when I got cold. I would go into the college bathroom and rub my fingers under warm water (not hot, as I did not want to burn myself.)

From then on, I started getting worse, and on top of it all, I was going through the change (menopause) at the same time. I graduated with an Associate Degree in Business, and then I started getting worse. I was overtired and needed naps in the afternoon, and pain was slowly getting the better of me so I finally went to the doctor.

After a physical exam and blood work, he told me I had Raynaud's and the CREST variation of systemic scleroderma, skin tightening on my fingers (sclerodactyly), along with fibromyalgia and chronic fatigue syndrome (CFS). I had already had gastric reflux and a hiatal hernia, both of which were giving me trouble with swallowing and causing me to throw up food as soon as I ate it. I also get frequent stomach ulcers, which are literally a pain. Whenever I get colds, or sinus infections, my asthma seems to get worse. What a mouthful of diseases for one person to handle all at once!

The doctor put me on acetaminophen and medication for my stomach ulcers. Once the ulcers healed, I was able to eat normally. However, I still occasionally get episodes of vomiting, and then I get put back on the ulcer medication. Now it is available over-the-counter and is less expensive.

Meanwhile, I wanted to go on for my Bachelor Degree but could not go to college. I was bitterly disappointed, but a year later I got my first computer and was able to continue my education online. I also met my future husband online, as well, a wonderful success story. I lived in New Jersey and Don lived in New York City.

In March of 1999, a year after my mom died (my dad had passed away seven years earlier), I met my new boyfriend. I moved from New Jersey to New York City in July of 1999. Another disappointment is that I never had any children, and now that I am through menopause, I cannot have any, so we are childless; but we have each other, and that is all that matters!

We got married on February 2, 2000, Ground Hog day! We both married late in life and waited for love. Anyway, my husband has multiple sclerosis (MS), which is now out of remission, and he is going through some pretty tough symptoms of his own.

We are both on Social Security disability, so we are still poor, barely able to pay the rent and our bills, but we have each other and that is what keeps us going forward. We hold many stoop sales (garage sales), just to be able to put food on the table.

Several years later I was diagnosed with Rheumatoid Arthritis, osteoarthritis, and high blood pressure —and not to mention that I am extremely overweight. Just this year, 2004, I was diagnosed with diabetes.

To Contact the Author

New email address needed 07-19-06 SLE
Old Email Prefix: newkiduptheblock
Story posted 08-16-04 SLE
Revision posted 08-24-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
CREST Scleroderma
Chronic Fatigue Syndrome (CFS)
High Blood Pressure
Multiple Sclerosis (MS)
Raynaud's Overview
Raynaud's Stories
Reflux (Heartburn)
Rheumatoid Arthritis (RA)
Systemic Sclerosis (Scleroderma)
Trouble Swallowing (Dysphagia)

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Bill: Diffuse Scleroderma

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