TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

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 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Kathy M: CREST (Limited Systemic Scleroderma) and More
I have had CREST (Limited Systemic Scleroderma) for nineteen years.

One Day Lily by Sherrill Knaggs, ISN Artist I am fifty years old, a white female, with more ambition than most twenty-year- olds. My nickname is Furious Fighter. Not that I am a furious person, but when the doctors look at me and ask me what I think is wrong when I am taking on another autoimmune disease, I immediately become furious inside.

Remember, do not show this attitude to the medical profession. They are only doing what they are taught. If you do not have the right doctor, do not get furious, move on! This attitude is what has kept me being a fighter and not letting it beat me.

I was diagnosed with Raynaud's thirty years ago. I have had CREST (Limited Systemic Sclerosis) for nineteen years. So you see, my attitude has helped me make it.

I am very lucky to have such a supportive family and friends. Without them I would not have made it this far.

The past two and a half years have been my biggest challenge. I have lost my job due to the illness. I believe that was the most stressful time in my battle. I had been with a company for twenty-four years. It was sold and after coming on with the new company, at the buy-out they decided that it was time for me to go.

I was at the Mayo Clinic for a month and when I returned home I had the termination letter waiting for me. Once again the furiousness in me came out! This unfortunately, was not the wisest thing to do. Stress! I had to recuperate from that one and move on.

I then returned to the Mayo Clinic to the Pain Rehabilitation Center for another month. I learned a lot of things to do to help with the pain and met a lot of people with various other challenges as well.

Believe me, we are not in this alone.

The list of autoimmune challenges I have is quite lengthy so no need to go on about that. I just fight one battle at a time. My attitude is not "If you cannot beat 'em, join 'em." Mine is, "If you cannot beat it, wait until you are stronger and then beat 'em!"

I guess I am posting this to let anyone know that with the right attitude, sometimes you can learn a new way of living. Take it for what has been dealt to you and live!

I will not be dead until the flat-line goes off (and they better wait a minute or two, because I am a fighter!) Then and only then will I quit living.

I am looking for anyone who is a positive, informative, upbeat person to chat with and has any of these qualities to share with me. I too, would share information with you as well.

To Contact the Author
Furious Fighter
Email: pkmiller1997@yahoo.com
Story edited 02-22-06 JTD
Story posted 04-21-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
CREST Scleroderma
Limited Systemic Sclerosis
Raynaud's
Raynaud's Stories
Scleroderma
Types of Scleroderma
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
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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.
 
Go to Kathy P: Localized Scleroderma
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved