SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) 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

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Elaine: Scleroderma

Calgary, Alberta, Canada

I really wish that one day they will find a cure for this.

Cactus Flower by ISN Artist Sherrill Knaggs I was diagnosed with scleroderma in the winter of 1986, in Calgary, Alberta, Canada. When I was about twenty years old, I started experiencing stomach problems and my fingers would turn a waxy white and feel so cold. I thought I would gotten frost bite on them or something at first.

Over the years I developed lumps on my knees, elbows, wrists and fingers. In 1985, while on vacation in Saginaw Michigan, visiting my husband's aunt with him, and his father, I awoke at 4:00 a.m. feeling fine. When I awoke again at 8:00 a.m. my left arm was swollen and I could not bend it. It was also warm to the touch. Every bump in the road on the trip home was agony.

I was given the wrong antibiotic at first and thought for sure I was going to lose the arm, since it had swollen to twice its normal size. Luckily that cleared up, but it took almost two months.

That started the long era of testing. I was sent for tests in Hamilton, Ontario and it was not until we moved to Calgary and a weeks stay in the hospital and numerous other calcium infections that I was diagnosed with theCREST Syndrome of Scleroderma.

Over the years it has gotten worse. I have had my hand operated on twice to remove calcium buildups, so I could keep on working. I love my job as a chef. Both of my knees have been operated on as well. There are days where it hurts to walk, get into the car, even shift or turn over in bed because of the buildup of calcium in my hips.

In fact I received a call a year ago from the doctor's office that the technician could not figure out what the white and gray shadows were in the X-rays of my hip. I knew, and once I mentioned it, they did too. I do not think there's a chance of removal there, because there's just too much.

I can't take a lot of the medications as I happen to be one of the people who experience side effects to a horrible extent, so I opted to suffer with the pain rather than feel sick all the time. It was a horrible time there for a couple of years because of drug side effects. I am still working and hoping that they will once again do my right hand so I can continue to work. My left hand that was basically free from deposits has now started to develop ulcerations as well.

Between GERD and all the complications of this disease it sure gets frustrating some days, but I figure it could be worse, a lot worse. I feel fortunate that I can still work and do the gardening that I love so much. It hurts to bend and what once used to be simple is now a chore, but the end results make it all worthwhile.

I'm also fortunate that my husband is very understanding and over the years he has been there through good and bad times, and my mother-in-law is a jewel. I know I would not have made it without either of their support. I know it will get worse, but trying to focus on happy times and good things and not myself or my disease makes it easier. I really wish that one day they will find a cure for this.

To Contact the Author

Elaine L.
Email: [email protected]
Story submitted 6-9-02
Story posted 7-11-02
LINKS
Calcium Infections
CREST Syndrome
GERD
Heartburn
Raynaud's
Types of Scleroderma
Ulcerations

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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.

Go to Eli: Sclerodermia and Raynaud's Syndrome
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.