Over 2,200+ pages in 22 languages!
 
Patient & Caregiver Stories Main Menu
(English) Stories 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
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Susie: CREST Syndrome
He handed me a brown paper towel and told me to quit crying because I was one sick girl!

Rose for Susie by Sherrill Knaggs, ISN Artist I have had CREST syndrome for the past eight years. My specialist is Dr. Frederick Wigley, from Johns Hopkins. Early on Dr. Wigley told me he would be my coach. I believed him and have learned many things about my health and mental health since being at Johns Hopkins. They truly have helped me.

I am not going to say I did not have initial shock after learning I had scleroderma. My first doctor told me I had only fifteen years to live! I started to cry in his office. He handed me a brown paper towel and told me to quit crying, because I was one sick girl! After that experience, my primary care doctor said he would transfer my case to Johns Hopkins, because scleroderma is so rare.

What followed after the first diagnoses was rheumatoid arthritis, acid reflux, neuropathy in both feet, Raynaud's, Sjogren's syndrome, skin ulcers, itchy skin, nerve damage in my elbows and hands, a bout of gangrene in one finger, shortness of breath, high blood pressure, and osteoarthritis.

I walked with a cane for about six months, but through medical technology I now only take one pill and no longer use a cane.

I went through a research project on Depression and Scleroderma, and was able to re-focus my pain, and think about other places, warm places. This really helped my thinking. Having daily pain is hard on your brain, and the good seratonin to keep in place with daily pain. I was able to switch this around. I am not saying I am pain free, I still have daily pain, but I no longer focus in on the pain.

Initially, I had taken a medical leave of three months. I could hardly walk up and downstairs, and I was out of breath all the time. So, my doctor told to take a leave from work and see how not working would help me.

In the beginning, things were going very well for me healthwise when I wasn't working. The stress from working outside the home was getting to me, and I was becoming so disabled. So, when it came to applying for disability insurance, I had made the decision of not going back to work.

I filed my claim, and then waited for eleven months. After nearly a year of not working outside my home, I was so down and out about not receiving disability insurance, that I contemplated returning to back to work.

I finally decided to go back to work, but not back to my original job. I found something I would enjoy doing and that did not require overtime. I also wanted something in the same field, but not as stressful as before. With stress we can really harm our bodies, especially with having several autoimmune disorders.

I have been working for nine months now, as a mental health social worker. I love my job but I really can tell when I have had a stressful week. It's not easy working outside the home, there's pluses and minuses to it. Even though my doctor gave me the okay last year to quit working, he feels working is better for me mentally.

I also babysit my grandson plus clean my home and tend to my gardens. I keep very busy, because otherwise I tend to dwell in my pain. I'm on many medications to treat my symptoms and to help with my arthritis.

I have met all sorts of wonderful people since being diagnosed and I pray for them. Some of my scleroderma friends have diffuse scleroderma, and they do suffer terribly with their disease.

To Contact the Author
Susie
Email: grammywinnie@aol.com
Story edited 04-30-05
Story posted 05-10-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Acid Reflux
CREST
Depression and Scleroderma
Digital Ulcers
Dr. Frederick Wigley
Gangrene
High Blood Pressure
Lung Involvement
Neuropathy
Osteoarthritis
Raynaud's
Rheumatoid Arthritis
Scleroderma
SCTC Scleroderma Experts
Sjogren's
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 Rose ThompsonJudith 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 !
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Keep on Surfing!
Go to Susie L: Raynaud's (and Scleroderma, too?)
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
Post in Sclero Forums!
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S.
1-800-564-7099
Direct Line
1-952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved