SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Naye: Systemic Scleroderma

I used to dance five records straight, now I am down to half a record.

Red Flowers by Shelley Ensz Hi, my name is Naye and I was diagnosed with scleroderma last summer. I was looking in the mirror one morning when I noticed a pink discoloration around my nose. I thought maybe I had scratched myself by accident and did not think anymore of it.

I went on vacation last summer to North Carolina and that's when I noticed the swelling. I figured it was from the heat.

When I got home from vacation I laid down and took a nap. When I woke up, I went outside to see my son. He looked at me and asked me what happened to my face. I went in the house and looked in the mirror my face was so swollen that I knew something was wrong.

I made an appointment with my family physician, who referred me to a skin specialist and after I took all the tests, he diagnosed me with scleroderma. Every month I go for blood work and the pain I have is in my chest area and the tingling I get in my legs and hands. When I have to get something out of the freezer I use gloves.

There's so much to say about this disease. I am going through the skin pigmentation now. It started on my face and now it's on my hands. I have been using the different creams and antibiotics, and taking pills for the inflammation. When it's cold outside my hands ache so bad. I miss doing the things that I use to do. It's hard sometimes to open things up, I have to get my eight-year-old daughter or my oldest daughter to open my medication for me.

My husband helps out a lot when he sees me struggling trying to carry something. I have a lot of restrictions now as far as opening my mouth, the use of my hands and legs. I love to dance. I used to dance five records straight, now I am down to half a record.

I get out of breath a lot. I took the breathing test, which came out fine. I was 166 now I am down to 158 thinking that might make a difference, but it does not as far as my breathing goes.

When my family sees me in pain, they ask, "Are you alright?" My little one asks, "Mommy are you going to die?" I look at her and say, "Mommy is okay." Now when I am in pain I try not to show it, so they won't get upset.

I worked for a doctor who is retired now from family practice and now his son, who is a chiropractor, owns the business. He heard about my illness and called me. He said, if there's anything I need or anything he can do for me to just call him no matter where he's at. That just touched me so much.

I had never heard of scleroderma until I got it! I went on the Internet to find out more about the symptoms and what other parts of the body it can affect.

I noticed I was having a lot nose bleeds. When I went to see the rheumatologist, my blood pressure was taken and it was pretty high. The doctor gave me a prescription for hypertension. The feel of my skin is tight and scaly.

I would like to talk to other people who have scleroderma. Thank you for reading my story.

To Contact the Author

New email address needed 09-26-06 SLE
Old Email Prefix: Lilsmmi
Story Posted 11-21-99

Story Artist: Shelley Ensz
Go to NB: Dermatomyositis

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.