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Nettie: Systemic Sclerosis with CREST

I am scared. There, now I have said it.

Pink Camelia for Nettie by Sherrill Knaggs, ISN Artist I do not really know where to begin. I have read many of the stories on this site and I have cried many tears for you all. I feel so bad that you suffer. Up until now I have done very well at pretending not to be ill.

I was first diagnosed when I was twenty-five years old in 1984 after the birth of my second child. But looking back, the Raynaud's and leg cramps began when I was fifteen years old. There is no family history of autoimmune disease. I had been to doctors numerous times with what they termed "vague complaints " and I was told I was too young and healthy to be having various troubles from joint pains, and unexplained brief periods of miscellaneous pain, chest pains, and bowel difficulties. I, of course, was a hypochondriac and in need of a psychological consultation. I passed on the consultation and kept my pains to myself.

One day I began having red blotches with awful itching and burning that appeared on my face, arms, chest and legs. Then my left arm and hand swelled to three times its normal size, turned black and was severely painful. Little ulcers formed on my fingertips.

I was sent to a rheumatologist where I was diagnosed. I went through several doctors as they all seemed to take better jobs elsewhere and I got very tired of having to repeat myself over and over again with each new doctor. I was prescribed many medications, and I had adverse, paradoxical, or allergic reactions to them.

I was told to avoid the cold, avoid stress, quit smoking and coffee over and over again. Guess what? I live in the Midwest and am a mom of meager means! Is there anywhere in the world where it is eighty degrees and sixty percent or less humidity every day with plenty of sunshine? That would truly be heaven!

I graduated from nursing school in 1991 and visited my last physician in 1992. I am now forty-two years old, the mother of six children and a self-employed RN Consultant. I have joined an exercise class three times a week to see if it will provide a miracle for my body. I was given approximately fifteen years to live from my diagnosis in 1984, and here I am seventeen years later. I chalk it up to stubbornness and avoidance of doctors. They may be great in all other fields but not with scleroderma. I felt let down.

I alternate between various over the counter medications, which I use conservatively. I tolerate as much pain as possible before using any medicine. At least if I can feel, I am alive. But I do not push the pain to the point of injury.

Yes, I am getting tired of dealing with the pain all over; the purple, cold, clumsy hands. The numbness, pain and tingling in all extremities; the constipation, diarrhea and abdominal pains; the chest pain, flutters, palpitations and shortness of breath; the extreme weakness and fatigue; the widespread joint pain and stiffness; the fluid retention in my legs, hands and face; the uncontrolled severe itching and burning my skin from head to toe; and the periods of insomnia. I also have a prolapsed mitral valve and sclerosing of the lining around the heart.

But the hardest thing still to handle, is the people around us who think we are normal and do not or cannot truly understand what we are feeling. Or those that are inconsiderate and rude when they look at your hands in the store when you are writing out a check and say something like "What is wrong with you? Your hands are purple or red!" Duh!

I try hard to keep it to myself because I have felt if I speak of how I feel out loud it will get worse, and I do not want to listen to it. I would sound like a hypochondriac.

I push myself to do everything like I used to and I get very frustrated when I cannot! But I am afraid if I give in and lay down, then I will truly die. I do not want to be a burden to my family and this concerns me so much. I feel guilty for placing this uncertain future burden upon them. I am thankful for all that I have and pray that I will take care of all my children until they are out on their own. My baby is five.

If there are any doctors out there with any new groundbreaking therapies, I may listen, but I am scared. There, now I said it. Thank you for letting me vent. I guess it has been building up for long, long time.

To Contact the Author

New email address needed 08-01-06 SLE
Old Email Prefix: daditzler

Story posted 12-3-02
Story edited 7-10-03 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Sherry Jo Young
CREST Syndrome
red blotches
Systemic Sclerosis (Scleroderma)
"vague complaints"

ISN Story Editor: Sherry Jo Young

Sherry Jo Young was the ISN Story Editor for this story.

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.

Go to Nickole: Surviving Daughter of Diffuse Scleroderma Mother
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