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Aileen: CREST Scleroderma

"It is very important for our families to be able to be a part of our illness."

Preening by Shelley Ensz I was fifty-three years old in January 2002. I have a delightful husband, two daughters, and four grandchildren, with a fifth on the way.

Scleroderma has been a bit of a bumpy path for me, but I think I am now at peace with my monster.

I suppose my story begins when I was a small child. We lived in a place with cold, wet, and frosty winters. They were miserable for me. I always had such cold hands and feet, which were covered in chilblains. It was not until I was about thirty that other symptoms started to occur. I was diagnosed with acid reflux and told to take antacids — everything would be fine. I always had aching joints, and I would hate to count the number of x-rays that were taken looking for arthritis that was never there.

I just gave up going to the doctor in the end and put up with it all, until my hands decided they would give up being useful and turned into numb lumps at the end of my arms. I had to go to the doctor then. He took one look at them and said it was Raynaud's phenomenon. He would do some blood tests as sometimes lupus accompanies Raynaud's phenomenon. I had heard of lupus, but did not know much about it.

I was very nervous when I called for the blood test results. What a troubling conversation that was. He told me the tests showed positive ANA. He then proceeded to say, "I really do not know what to do with you. Maybe you had better make an appointment, and we will see who we can send you to." As you can probably imagine, I was rather puzzled and anxious over all this.

I went to see him and was referred to another doctor. He told me I did not have lupus; I had CREST. He explained that it was like a cousin to lupus. He talked a bit about T cells, which went straight over my head. He gave me some tablets that he said would help the Raynaud's phenomenon and, if I had any problems, to go back to my general practitioner (GP). At no time was the word scleroderma mentioned. I assumed all I had to worry about was Raynaud's phenomenon. The tablets did not help, so I went back to my GP. I tried numerous different medications with no result.

I was then sent for Guanethidine blocks, of which I had three, also with no result. At the same time, the pain in my joints was getting worse. I spoke to my GP about it, and he seemed to think it was the work I was doing. He gave me anti-inflammatories. Wow! My stomach did not love those. At no time was I told that painful joints were part of my disease.

My husband and I both worked very long hours at fairly stressful jobs. We had our own small, stone fruit property that we were slowly building up, and we also worked away from our farm. He worked in a bowling club, and I worked ten hours a day, six days a week as a packing manager for a large grape and avocado export property.

I was always exhausted and in a lot of pain. I handled the pain by working harder until the pain turned to a warm fluid in my body. That was okay until I stopped, then it was agonizing. I could not sleep because the pressure of my own body on the bed hurt too much, so I was existing on four to five hours of sleep a night.

Then, it all came tumbling down. Fatigue hit in a big way and I could not eat; I always felt full. I lost eight kilograms in six weeks. I went back to the GP only to hear him ask if I was worried about something. Worry can make you tired and lose your appetite. I left his office feeling let down. I gave up work thinking I would get better, but the fatigue continued and so did the lack of appetite.

Then, a boon happened when we got connected to the Internet. I typed in the search term "CREST" and sat in front of my computer in a state of shock. This was the first time I realized I had scleroderma and what that meant to my life. Thankfully, my husband was not home, so I had time to cry it out, sit and look at what may be in store for me, and then compose myself. I printed out some of the basic information and made an appointment to see my GP. When presented with the information, he asked if he could keep it. He said he really did not know very much about scleroderma and it made for interesting reading.

This man had been treating me for five years, but knew nothing! I felt angry, sick, and betrayed. How could he keep me as his patient under these circumstances? Why did he not refer me to a specialist? Perhaps he really did not know how serious scleroderma could be. He may even have been as ignorant as me and thought the Raynaud's phenomenon was the only symptom that came with it.

My husband and I had to make a decision about our future. I could no longer work on our property, and the extreme weather was physically hard on me. With many tears, we decided to sell our beautiful property and move closer to our daughters and grandchildren.

I was very lucky to find a GP who immediately sent me to a specialist. Oh, it is a wonderful feeling to have a doctor tell me that I was not imagining things; that everything I was experiencing was because of scleroderma! He monitors me closely with a range of blood tests every three months, a yearly pulmonary function test (PFT), and an echocardiogram. I am treated so well and bless my luck in finding him.

The fatigue is terrible and never lets up. It has changed my whole life and the way I do things. We never plan anything ahead, but take things day by day. I went through a period of terrible grieving, then anger at losing my mobility. I have always been a doer, always on the move. I loved bush walking, swimming, all outdoor activities and, in one fell swoop, it had all been taken away. I was left a spectator.

I have come to terms with it now and take great pleasure in the slower things in life, like bird watching, my frog pond, and my computer. My stomach is a major problem, as it does not empty. I am on medications for it, but it is no better. I am thin and will just have to stay that way. At mealtimes, I have no appetite and must force myself to eat. To no avail, my gastroenterologist sent me to a dietitian with the hope he could sort out a food regimen to help put on some weight.

One great bonus to come out of all this is the friends I have made around the world. During a very low ebb, I found a website and submitted my story. I was overwhelmed by the response, and I now have a wonderful circle of people to whom I write regularly.

I also started my own website, Scleroderma and You, as therapy for myself and, after a very slow beginning, it has grown rapidly.

It has taken me a long time to stop fighting against scleroderma and to start accepting the way I now must live my life. I willingly let my family help me instead of trying to do it all myself. My daughter told me she used to go home and cry because she felt so helpless watching me try to do things for myself and I would get cranky when she would try to help. I think it is very important for our families to be a part of our illness and not shut them out. They hurt, too.

Each day brings new challenges with our disease, but as long as we face them with a positive attitude and a smile, we will overcome all obstacles.

To Contact the Author

Email: [email protected]
Story posted 3-23-02
Story edited V1 8-01-03 JTD
Story edit posted 8-5-03
New email posted 8-18-03

Story Artist: Shelley Ensz
Story Editor: Sherry Jo Young
Story Editor V1: Judith Devlin
Acid Reflux

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Sherry Jo Young

Sherry Jo Young was the ISN Story Editor for this story.

Go to Ainhoa: Morphea

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)