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
Jaci: MCTD and Autoimmune Hepatitis
What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors.

Pink and Yellow Flowers by Shelley Ensz My name is Jacqueline. I am forty-one years old now, but my illness started at the age of twenty-two. My first symptoms were swollen joints. My wrists would swell, my fingers became swollen, my skin became very itchy and blotchy. Sometimes the itch would drive me crazy and keep me awake all night. I also became extremely tired.

Sometimes just showering would take all my energy and I would have to lie on the bathroom floor for twenty minutes or so just to gain the energy to get dressed. I became tearful and anxious wondering what was happening to me.

I visited my doctor on a few occasions, but blood tests showed nothing unusual. Eventually I was told I must be depressed, and these symptoms were caused by depression. I knew I was depressed because I did not feel normal anymore. While all my friends were out having fun, I was at home in pain, tired, and feeling more like a ninety year old.

Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors. I started to wonder if it was all in my mind.

Years went by, and I tried different things to help myself: meditation, avoiding stress, better eating habits. Sometimes I would improve for a while, then the symptoms would all come back again. It was a very stressful time. Sometimes I felt like ending my life, as I could not understand what was happening to me. The illness was so strange, it affected so many parts of my body, even my mind. I would get brain fog, and forget things. I felt like I was going senile.

At times of desperation I would go back to the doctors, almost pleading for help. Fortunately my doctor never gave up on me and sent me to a specialist in gastroenterology and hepatology as I was having stomach problems and would often be sick. I also lost weight.

My hospital visit was successful in the fact that I finally had a diagnoses of autoimmune hepatitis, a rare liver disease. I was put on steroids. In that time, I felt a little better, but I was still feeling unwell, tired and my body often ached.

Eventually I was sent to an immunologist who first diagnosed lupus, then two years later diagnosed mixed connective tissue disease, MCTD.

In the last year I have had kidney problems. My potassium levels were dangerously low, causing irregular heart beat. This was finally diagnosed as renal tubular acidosis, then a few months after that my colon ruptured. I spent three weeks in the hospital very ill with a major infection.

This year I have had breathing problems, which come and go. I have had them in the past but they seem to be getting worse. I am having heart and lung tests next month.

Through all this I have had very little support from my family. A lot of people I have spoken to with this illness have the same problem, because we don't particularly look sick so we must be alright. Usually these people will not even read about the illness, so they do not know how tiring and debilitating it can be living with a chronic illness.

To Contact the Author
Jaci
Email: jacqueline.paterson@yahoo.com
Story edited 04-17-08 JTD
Story posted 04-30-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Bowel Involvement
Depression
Depression Stories
Fatigue
Fatigue Stories
Kidney (Renal) Involvement
Kidney Involvement Stories
Liver Involvement
Liver Involvement Stories
Lung (Pulmonary) Involvement
Lupus
Lupus Stories
Overlap Syndrome: MCTD
Overlap Syndrome Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums Online Support
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
Nikhath: Linear Scleroderma (India) I hide my hands from everyone and because of this behavior of mine, people assume that I am shy...
Dorne: Overlap and Possibly CREST Since 2002 I have been diagnosed with Lupus, Sjogren's Disease, B12 deficiency, mild pulmonary hypertension, Celiac disease, Type II diabetes and now the specialists are seriously talking about CREST...
(Update) Dorothy: CREST Scleroderma for 39 Years I've learned many things over the years and the most important is having a positive attitude no matter what incurable affliction one has...
Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is...
Kathy: Generalized Morphea Scleroderma I finally pressured another doctor for a referral to a dermatologist and had a biopsy done and was finally told morphea scleroderma...
Karligash: Systemic Scleroderma (Republic of Kazakhstan) Young, beautiful, full of hope and expectations for my life, for happiness and love — that was me, 19 years of age...
(Russian) Карлыгаш: системная склеродермия (Республика Казахстан) Молодая,красивая,полная ожидания от жизни счастья,любви такая я была в 19 лет...
More New Stories: June 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.
Keep on Surfing!
Go to Jackie: Scleroderma, CREST, and Pulmonary Hypertension
Contact ISN. We are a full-service nonprofit scleroderma charitable foundation.

Email Inquiry Form (English)
Email Inquiry Form (Spanish)
Email Inquiry Form (Italian)
Email: isn@sclero.org
Or, post a message in our terrific
Sclero Forums Online Support Group!

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