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Betty M: CREST Scleroderma

I pray that doctors everywhere can learn more about scleroderma so that no one will ever have to go through what I and my family have gone through, ever again.

African Greys Kissing at Birds n Stuff for Betty by Shelley Ensz Help! I am scared. My name is Betty. I am a forty-six-year-old female. I have spent the last twenty-five years in hell—little did I know that I had scleroderma.

It started with severe headaches and stomach problems. I went through countless tests and doctors and nothing could be found that would cause my pain. The doctors told me and my husband that it was all in my head.

I was in so much pain for so long at one point and so desperate to end the pain that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory. I do not even remember my son being a baby.

After that was over, I was still left with the severe headaches and stomach problems. It seemed that no matter how much are what kind of medication I was given, it did not help.

My husband and I were divorced by the time I was twenty-two. I tried to go on with my life. I would go for long periods of time without being sick, but suddenly the pain would return. There were so many times that I did not want to go on living with this pain but I knew I had to for my son.

Then God sent me a wonderful man that really loved me and cared about me. He believed me and knew I was in pain when all the doctors said there was nothing wrong. He stood by me through all the headaches and the stomach problems.

They did so many surgeries on my stomach that we lost count. They would send me to the psychiatrist, psychologist, and every kind of counseling they could. Every time they would tell us that there was not anything wrong with my mind, that I was sick, but the doctors just could not find out what was wrong.

This only made the doctors mad and they would tell us that I was just a drug addict or I was just faking my illness. My husband had taken me into the hospital one time with my stomach so swollen that I looked like I was nine months pregnant. I had been there before for the same reason and they had done surgery on me and could find no reason for the swelling.

At that time I was having severe bleeding ulcers, so they ended up doing a vagotomy on me. The swelling still kept coming. But the second time he brought me in for this reason, the doctor said I was faking my illness. Here I was looking like I was nine months pregnant and he said I was faking it and let me lay there for hours in pain. It was so bad that the nurse was crying and begging him to give me something for the pain.

I spent six weeks in the hospital that time. They sent me home still in pain, with a sack full of medicine, and told us there was nothing wrong with me. Try and figure that out.

The swelling of my stomach kept getting worse and I was again taken to the hospital where they did surgery once again to find nothing wrong. The doctor there did more tests and decided to transfer me to Dallas, where I was put through more tests.

I was right in the middle of the test where they put the scope up you when they had to stop because I was in so much pain. They had given me all the medication they could but it never seemed to work. The next morning the doctor who had tried to give that test came in and literally started cussing me and saying that no one could have been given that much medication and still be in pain. He told my husband that the only thing that was wrong with me was that I was a drug addict and that I was just there for the drugs.

I kept looking at my husband and waiting for him to say something but he never did. We left the hospital with me still sick and in pain. The pain was in my heart that day more than anything else, because I thought I had lost the support of my husband. Soon after that my stomach quit swelling but the pain was still there and the headaches became more severe.

I started really doubting myself and started believing that the doctors were right, that I was just a drug addict. I had been taking pain medication and all sorts of other medication for a lot of years. So one day I just quit taking everything. Needless to say I went into heavy withdrawal and ended up in a rehabilitation center.

After I got everything out of my system, I thought all of our troubles were over and the doctors had been right, I was just a drug addict. I even wrote to one of the doctors who had really tried to help me and told him that it had just been the drugs. But even with everything out of my system, I was still having all of the problems and now I was afraid to take anything, and to make matters worse I developed chest pains.

When I had been off all drugs for six years and still was having the same problems, I knew once again the doctors had been wrong. When you have been through what I had been through, trying to take my own life, being put into a mental hospital, labeled a faker and a drug addict, it is really hard to get a doctor to believe you.

The chest pains at this time had gotten severe and once again tests were run and all they found was that my veins were very tiny and that I had more veins than most people, but no real reason for the severe pain. The doctor said he did not need to see me again and sent me back to our family doctor. My doctor decided he wanted to keep me on the nitroglycerin since he thought I was having heart spasms because my veins were so tiny.

He also decided to try and find out why my hands stayed so dark red all of the time. The other doctors just blew us off every time we asked them why my hands stayed this color. With a lot of research and a good look at my medical background, he knew what he had found: I had scleroderma and it was the CREST Syndrome.

This wonderful doctor took the time to once and for all find out what was wrong with me. The news was not good, but after all these years, after all the tests and surgeries, after all the pain and humiliation, someone cared enough to find out what was wrong.

Scleroderma has affected my heart, my lungs, and my kidneys. He has told us that the outlook isn't good. Scleroderma is now affecting my legs and arms with pain and going numb and swelling. Our doctor is learning about scleroderma along with us and we still do not know a great deal.

When I think of all the money we have spent, because we never had insurance through all of this, all the times I was called crazy, all the times I was told I was a faker and a drug addict, I just want to sit down and cry.

I pray that our doctor and doctors everywhere can learn more about scleroderma so that no one will ever have to go through what I and my family have gone through, ever again.

Maybe someday someone will come up with a medication that will help me so I won't have to live what life I have left in pain. I am sorry that this letter is so long. If anyone can give me or my doctor some advice, we would really appreciate the help.

To Contact the Author

Betty M.
New email address needed
Old Email Prefix: dmaran
Story posted 3-23-01
Email note posted 01-24-05 SLE

Story Artist: Shelley Ensz
CREST Syndrome
Difficult Diagnosis
Esophagus Involvement
Gastrointestinal Involvement
Heart Involvement
Kidney Involvement
Lung Involvement
Types of Scleroderma
Go to Betty W: Morphea

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