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
Theon: Scleroderma and Pneumothorax
This can be so frustrating at times, and sometimes depressing.

Home Sweet Home by Shelley Ensz I was diagnosed with scleroderma in 2006 during my stay in the hospital at which time I was admitted for pneumothorax. My first bout with pneumothorax was in 1985, and the diagnosis was blobs on my lungs.

In 2005 I noticed that my hands were getting cold, and turning blue. I went to my doctor, and she diagnosed me with having Raynaud's.

In 2006 again I was admitted into the hospital with pneumothorax at which time I was diagnosed with scleroderma, and pneumothorax again in 2007.

I experience from moderate to severe pain in my shoulder's, knees. hips back, and legs. I get an upset stomach and sometimes vomit. I have heart palpitations, with my heart pounding very hard, fluttering, and missing a beat. I get pains in my chest. I am on oxygen all the time. When I get pains in my chest, and I get the palpitations, and the fluttering I get short of breath. This can be so frustrating at times, and sometimes depressing.

I try to talk to my husband about my condition, but I also need to talk to someone who really understands and knows exactly what I am talking about.

This is very hard for me, because I was a very active woman, and then suddenly I am totally and completely disabled. I had a wonderful and challenging job taking care of someone who is developmentally disabled. I had been working with her for five and a half years. She was like my baby, and to have to leave her was depressing enough and deal with my illness is a little more than I can take.

I would like to know what I should expect to happen in the future as this disease progress. I have noticed a discoloration on the back of my hands, wrist, going up my arms, on my knees, and it is starting on my face. I have also noticed the texture of my skin has changed some also. In some places it feels a little hard to the touch, and I can't pinch my skin.

If I had just one wish I would wish for a new body. I wouldn't wish this on anyone not even my worst enemy.

To Contact the Author
Theon
Email: theon_smith@yahoo.com
Story edited 03-19-08 JTD
Story posted 04-02-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Disability
Heart (Cardiac)
Heart (Cardiac) Stories
Lung (Pulmonary) Involvement
Lung (Pulmonary) Stories
Raynaud's
Raynaud's Stories
Skeletal Involvement
Skeletal Involvement Stories
Skin Fibrosis
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
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
Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button...
(Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo...
(Español/Spanish) (Update) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Ya había escrito mi historia hace 3 años cuando recién estaba pasando por la enfermedad. Para quienes no lo saben tengo esclerodermia y dermatomiositis desde los 19 años.
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...
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 Theresa C: CREST/Limited Scleroderma
Contact ISN. We are a full-service nonprofit scleroderma charitable foundation.
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.)

Donate in Memory to the nonprofit International Scleroderma Network at sclero.org. We will make a custom donation form and link for you, and send thank you's and acknowledgement cards. We list donors and events in our website and newsletter.

Please help raise awareness of scleroderma and related illnesses by mentioning and linking to the nonprofit International Scleroderma Network at sclero.org in conversations, speeches, web sites, and publications.

(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved