I was originally diagnosed with CREST in 1991. It has since been upgraded to systemic sclerosis. Looking back, my first symptoms occurred in 1974, two years after giving birth to my daughter. I had gangrene in two fingers, pneumonia, and all kinds of weird infections. Prior to that, I had always had irritable bowels ; I have never been regular.Raynaud's phenomenon was also present.
Four years later I had a hysterectomy due to endometriosis and have never felt right since then. Most of the doctors told me it was stress or all in my head, so the frustration turned inward. I was severely depressed for years, mostly because I was always tired and physically miserable, but since the doctors had found nothing specific, I also blamed myself and even had one suicide attempt.
Finally, due to a severe esophagael stricture (I was down to one hundred pounds because it hurt to eat and swallow) and severe chest pain, my daughter rushed me to the emergency room thinking I was having a heart attack. There I met the doctor who saved my life. After undergoing testing for AIDS, leukemia, multiple sclerosis (MS), and a list of other possibilities, he told me I have CREST/ scleroderma which I had never heard of, nor had anyone else I knew. He also said, One in two hundred people get a disease in their lifetime, and scleroderma is like having twenty to thirty diseases at once. That made my day.
After that, I went through the disability process and moved back home with my parents. The loss of my independence has been the hardest thing, but after a few years of heavy-duty soul searching and major adjustments, I am happy and look at my disease as a blessing in disguise. I have since written three novels. The Kiss of Judas was published in 1996. Publishers are considering the other two. I have made good use of all this free time, and I think that is the secret. Keep busy, even if it is just reading or surfing the Internet.
Since I published my story on the website over a year ago, I have received several uplifting and supportive emails, which I have surely appreciated. I also lost a dear friend, Julie, to scleroderma. She was the first other scleroderma person I ever met in person! My daughter is also showing early signs (Raynauds phenomenon) of this disease.
I write now with encouragement that life indeed does go on! I recently published my second novel, A Switch In Time. It is a historical, spiritual, and futuristic adventure story where one of my main characters gets scleroderma. I thought that it would be a good way to give this disease some much-needed exposure as it still astounds me how many medical and regular people have never heard of scleroderma.
My message today is that anything is possible, sick or not sick. We are not our bodies. Keep the faith everyone! Please look at this disease or any disease as a gift, a blessing in disguise. Our downtime can be just what we have been praying for to tackle some of our dreams!
~ Update 7-13-02 ~
I just published my third novel Mind Blindness, a political thriller.
Health wise, I am doing okay. I am very grateful for the opportunity that Shelley has extended to me, regarding working with the International Scleroderma Network and the SCLERO.ORG website.
The other volunteers and patients/caregivers who I have come in contact with have been awesome and uplifting. Especially since being disabled, having something of such importance to do keeps me involved and busy, and is a godsend! I highly recommend volunteering for an ISN volunteer position as a way to keep a healthy mind-set and a purpose to trod onward. And it is lots of fun, too!
I wanted to share a positive update to my story. This has been quite a year for me.
In May our first volume of Voices of Scleroderma was published which was very exciting. This was the first project I had proposed as ISN Archivist Committee Chairperson. This book features articles by world experts in scleroderma, including Dr. Joseph Korn, as well as over a hundred personal stories from this website, from sixteen countries and in five languages. It was truly a labor of love from start to finish, and it was a joy for me to work with people throughout the world to help make this dream come true. Now we are working on Voices of Scleroderma Volumes 2 and 3.
Then in July I met a special man, Jim Devlin. In November he asked me to marry him and on December 18th we were married by "Santa" who just happened to be a Justice of the Peace. Talk about the 'magic of Christmas'.
We also moved into a new home and will be celebrating our first Christmas together as we wait to become grandparents. My daughter and her husband are in the process of adopting a baby.
Somewhere along the line I put my scleroderma on a back burner and got busy living again. And for some reason my symptoms seem minimal right now compared to all the new things that have come into my life.
I guess the message I would like to send is "Don't give up." Stay involved with your life and do not let scleroderma get the best of you. It is just a blip in the scheme of things. I wish all of you the best in life!
~ Update 01-26-06 ~
A lot has happened since my last update. First and best, I am now a grammy of a wonderful little boy. Didn't think I'd be around for this so I am enjoying every moment we spend together.
Last week I saw a nephrologist due to abnormal kidney results. This was disconcerting. My doctor has suggested vascular surgery on them. Next week I go in for a CAT scan and more lab works to see if I am a candidate for the surgery. So far I have learned that the surgery is a 50/50 deal—50% chance of it working and relieving me of high blood pressure and 50% of it not helping much at all.
After reading my medical history, the doctor told me that my kidneys have been failing since 1997. No one had mentioned that fact to me prior to this appointment, so I am a bit mad about that. It makes me wonder how many years kidneys can be in the process of failing, without medical attention. The only good thing is that I have been on blood pressure medication the whole time, but now my blood pressure is just higher.
I will go forward with this setback with mostly positive thoughts. After all, I was originally told I only had 5 to 7 years left to live, back in 1991 when I was originally diagnosed with scleroderma, and I breezed through those years. Hopefully the next few months will be a breeze, also.
|Judy Thompson Devlin
Email: [email protected]
Story posted 9-27-99
Story updated 2-9-01
Photos added 7-25-02
Story updated 7-22-03 JT/V1
Story updated 12-23-03
Story updated 01-26-06 SLE
A Switch in Time Novel
Mind Blindness Novel
Multiple Sclerosis (MS)
The Kiss of Judas Novel
Voices of Scleroderma
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