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Naomi: Systemic Sclerosis and Pulmonary Fibrosis

We may not win but we will not be brought down that easily!

Rose for Naomi by Judy Tarro, ISN Artist Hi, my name is Naomi. In 1985 I became pregnant with my fourth child. After carrying the baby for five months, I suddenly began to bleed. I immediately called my doctor and was told to go into the office. After several tests they told me my baby was fine. A week later my baby was dead. Later I found out that my baby had never developed in my body; I was five months pregnant but the baby was the size of a one month pregnancy and therefore could not survive. Thus began my problems.

Several months later I began to experience cold hands and feet with blue hands and sores on my fingers. I believe this was the beginning of my illness, although I was not diagnosed with scleroderma until 1991! To top it off I had the worst kind, systemic sclerosis. The specialist that saw me was very good and did not beat around the bush. I will never forget her words to me. She looked me in the eyes and said to me and my husband that scleroderma was a disease which had no cure and no medications, only experimental medications.

I asked her the prognosis and she said, "Two years." I looked at her in utter disbelief! My life flashed in front of me. Here I was in my early thirties with three little children at home and this doctor is telling me that within two years I could be dead. I looked at her and I remember telling her that there was 'No way I was going to die!' I had children to raise.

Well, guess what, that was thirteen years ago! Not only did I raise my children but on October 4th and then again on November 1st of this year, I married off my two boys.

I made it through their graduations and also through their weddings. They were so grateful to be able to dance the 'son and mother dance' at their wedding that they (and me along with the guests) cried through the whole song.

And I have no plans of going any where. I will fight this battle until my body cannot take it any more. My doctor is astonished of my attitude considering I have Raynaud's, my fingers are curling up and I have lost my nails, pulmonary fibrosis along with the scleroderma, acid reflux, aspergillosis and an irregular heart. I am on oxygen all the time, and can only walk a short distance. Because my left lung collapsed due to so much scar tissue, I have partially lost my voice.

But I have faith, which gives me the strength to continue on. I look forward to hopefully having grandchildren some day so I plan to be around for a while longer.

It is true that I have more bad days then good ones but I am thankful every day I am alive. I have also inspired others that suffer from other kinds of illnesses. I encourage them to fight and not to give up. And I encourage all readers to do the same.

Do not give up! Fight the battle! We may not win but we will not be brought down that easily!

To Contact the Author

Naomi
Email: [email protected]
Story posted 11-6-03

Story Artist: Judy Tarro
Story Editor: Judith Devlin
LINKS
Acid Reflux
Difficult Diagnosis
Pregnancy and Scleroderma
Pulmonary Fibrosis
Raynaud's
Scleroderma
Systemic Sclerosis

ISN Artist: Judy Tarro

Judy TarroJudy Tarro, ISN Artist, created the digital photo to illustrate the story on this page.

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!

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