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
Gail: Undifferentiated Connective Tissue Disease (UCTD)
I always had a routine; now I have none,
because from hour to hour I do not know how I will feel.

Poinsettia for Gail by Shelley Ensz I am thirty-four year old female who worked as a nurse since 1987. In 1996 I worked around sick people a lot and noticed I would get sick easily. I started getting weaker physically. I had headaches, got a lot of bladder and kidney infections, and was sent to kidney and bladder specialist at a university hospital.

They did a series of tests and blood work and found I had interstitial cystitis (IC), a positive antinuclear antibody (ANA) test, and gastrointestinal dysmotility. I was referred to an arthritis doctor, who did more tests and blood work, and then told me I had undifferentiated connective tissue disease (UCTD) with scleroderma symptoms.

I thought my life was over. I missed a lot of work due to weakness and sickness. I felt lost because all I knew was nursing and what would I do now? I did not adjust well. I cried and was depressed for a year.

I was put on Social Security Disability in 1997. I have to get steroid shots in my shoulder muscles and neck for lockjaw and tightened muscles. I have a lot of bad days, which means I am very weak and it is hard just to get out of bed. I do good to do simple house work now, when before I worked eight hours a day, then came home and cooked and cared for two children, and kept up the house.

I now need help from everyone. When I do feel good, I try to do too much, and then I am flat on my back for days. I always had a routine; now I have none, because from hour to hour I do not know how I will feel.

My finger and toenail beds turn blue, and I lose nails from time to time. My hands get numb and I cannot seem to hold a glass; at times I lose my grip. My hair is falling out and breaking off. Sometimes I have problems swallowing. I do not tolerate the cold at all.

I try to do water exercise, when feel better, for my arthritis. It is miserable to have all these things going on with my body at this age. I still get down and out at times and think why me! Sometimes I feel helpless.

I see lots of doctors, including a skin doctor. I get so tired of them. I take several medications. I would like to talk to anyone who knows what I am going through.

To Contact the Author
Gail
New email address needed.
Old Email Prefix: pamie1966
Story posted 2-24-01
Story edited 7-13-03 SLE
Email comment posted 7-13-03

Story Artist: Shelley Ensz
LINKS
ANA Antibodies
Depressed Difficulty Swallowing
Gastrointestinal Involvement
Interstitial Cystitis
Raynaud's (cold intolerance)
Social Security Disability
Undifferentiated Connective Tissue Disease (UCTD)
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 Gaynor: Morphea and Possible Systemic Sclerosis
 
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