Visit Sclero Forums, Chats and Blogs!
 
Search sclero.org:
 
The most important thing in the world to know about
scleroderma is sclero.org with 5,000+ pages in 23 languages!
 
Donate in MemoryIn loving memory of Tom Regensburger, and Vera Kortan . (Donate)
Home   Medical   News   *Sclero Forums*   Support   Languages/Countries
Earn $150 on July 30th in Boston Marketing Research Study if you have scleroderma or CTD and have been screened for pulmonary hypertension!
Frog jumping for joy by Shelley EnszPDF Flyer: Boston Marketing Research Study. Schlesinger Associates-Boston, a national marketing research company, is currently looking for patients who have been diagnosed with Scleroderma or other Connective Tissue Disease, who either have pulmonary hypertension or who are regularly screened for it, to participate in a July 30th paid marketing research study in Boston. Read PDF Flyer: Boston Marketing Research Study or call Katherine at 617-542-5500 x310. Schlesinger Associates-Boston. Posted 07/26/10.
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
Stories in Other Languages: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Christy: Systemic Scleroderma with CREST

I have tried to do everything humanly possible to outrun the shadow.

Dahlia for Christy, by Judy Tarro, ISN Artist On my fortieth birthday, I made the decision to pursue a business degree while working full time. I was feeling somewhat run down at the time and decided it was time to have a checkup. I went to my family physician who recommended I have my blood chemistry tested.

When I called back their office for the results, the woman on the other end said I tested positive for lupus. This test result was devastating news until my family physician returned from vacation, called me and explained the test was not indicative of a positive lupus test, but rather high ANA levels, and recommended I see a specialist. I was diagnosed with systemic scleroderma. The symptoms I was experiencing pointed directly to CREST.

I began a regular schedule of routine visits twice a year, which more than not seemed more scary than routine. There was never enough time between visits or freedom from pain to let me forget this shadow that had cast itself upon me. I have tried to do everything humanly possible to outrun the shadow.

I just experienced my forty-eighth birthday. I will never forget the look on my daughter's, husband's and parents' faces when I graduated from school. Fortunately, I have been able to continue working. I firmly believe that if I slow down, I will lose momentum. However, I am more selective on what I consider quality time. Now, I have resigned myself to the fact, it is okay to sit outside in my herb garden or pet my dogs, and just let the housework go. Housework will always be there tomorrow. Special moments that give us true pleasures are sometimes too few and far between.

Most importantly, during these past eight years, I have turned to my faith. I have learned from personal experience that sometimes not even our closest friends want to hear about medical changes taking place within us. It is not because they do not care, but rather their fear of the shadow. My faith has taught me not to judge, but accept their friendship and make the most of each moment.

To Contact the Author
Christy
Email: Withheld by request
Story posted 4-28-04

Story Artist: Judy Tarro
Story Editor: Judith Devlin
LINKS
CREST
Lupus
Systemic Scleroderma
What is Scleroderma? PDF Brochure
ISN Artist: Judy Tarro
Judy Tarro, ISN ArtistJudy Tarro, ISN Artist, created the digital photo to illustrate the story on this page. She is also owner of SD World website and email list.
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
Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success...
Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue...
Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye...
Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse...
Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen...
More New Stories: May-July 2010
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 Cindy: Undifferentiated Connective Tissue Disease (UCTD)
 
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

This website is certified by Health On the Net Foundation. Click to verify.
This site complies with the HONcode standard for trustworthy health information: verify here.

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.
Privacy Policy, Financial Disclosure, and Disclaimer.
© Copyright 1998-2010 International Scleroderma Network
All Rights Reserved
 
Home   Donate   Medical   News   *Sclero Forums*   Support   Translations   Search