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Sharon: Limited Scleroderma, CREST, Sjögren's and Pulmonary Hypertension

When the going gets tough, the tough eat chocolate.

Six years ago, I noticed a lump in my mouth that was slowly getting bigger. Three years later, I had surgery to remove a lump on my parotid gland. It turned out to be mucosa-associated lymphatic tissue lymphoma (MALToma). Subsequent blood tests revealed positive antinuclear antibodies (ANA). I had a CT scan, which revealed several lymph glands of pathological size. I was sent to an oncologist. I decided against treatments as radiation could cause tooth loss on the treated side, and chemotherapy could cause other problems in the future. My surgeon was sure he had gotten it all, so I decided to wait and see. I had a colonoscopy and a gastroscopy, which were both okay.

I have a checkup every six months and so far, so good. Then I went to a rheumatologist. Eventually, he diagnosed Raynaud's phenomenon and Sjögren's Syndrome and told me to come back when I had any symptoms. With a chronic, incurable autoimmune disease, there was nothing he could do until I became worse. I did not like him and did not go back. I was devastated; I had a disease I could not even spell and which I had never even heard of.

My girlfriend is a nurse and my greatest support. We hit the medical library at the university and got a lot of information. Meanwhile, my mouth was getting drier. I cannot swallow a mouthful of food without a mouthful of water, or I choke. If I try to talk without sipping water, my tongue sticks to my teeth and the roof of my mouth. Bottled water has become my closest friend; I do not go anywhere without it.

I have dental phobia, so the hardest thing for me is going to the dentist three times a year, but I do anyway (thank goodness for 'happy gas!'). My teeth are full of fillings. I use a fluoride gel and clean my teeth twice a day with a special toothpaste for dry mouth.

My nose dried up, as did my vagina and my tears. I started getting dry eyes and I have trouble focusing, even with my glasses. I now use eye drops four to six times a day and see an ophthalmologist regularly.

My handbag is a portable medicine cabinet filled with lotions, potions, gels, sprays, drops, and moisturizers. I use only a very mild soap now, and I cover my body in moisturizer after showering each day.

About six months ago, I started to feel very fatigued and needed to sleep in the afternoon. My arms and legs had a dull ache. I noticed telangiectasia (small red spots) appearing on my fingers, so I requested an appointment with another rheumatologist, one who was more compassionate. She is wonderful! When I saw her for the first time, she ordered extensive blood tests. The results showed limited scleroderma and four of the five symptoms of CREST Syndrome. My ANA antibodies count has doubled. I also have elevated blood pressure, and I am a longtime sufferer of irritable bowel syndrome (IBS).

Day by day, I discover another food I cannot eat due to heartburn caused by esophageal dysfunction (the E in CREST), and my mouth and tongue burn. I cannot eat any fruit, with the exception of melons, nor can I drink fruit juices. I cannot tolerate anything spicy or acidic.

In April 2001, I had a gastroscopy, as the heartburn/reflux was getting worse. The procedure revealed that I have Barrett's esophagus with two ulcers. I was started on heartburn medication, and after more than five years of dreadful heartburn, within a week I was pain free. Within a month, I was able to eat bananas and tomatoes, and drink the odd glass of red wine again. And I was sleeping much better. Every six months, the gastroscopy is repeated.

In May, I had an attack of terrible chest pain, so I had an ultrasound, which revealed a large gallstone. The following week I had my gallbladder removed. During the next three weeks post-op, I had niggling pain and discomfort. Then one morning I woke up in agony with pain like I have never experienced in my life. I was taken by ambulance to intensive care, where subsequent tests revealed I had either a small stone in the bile duct or bile duct spasms.

The next day I had an endoscopic retrograde cholangiopancreatography procedure (ERCP) with sphincterotomy. Within twenty-four hours of the procedure, the pain increased rapidly. I was diagnosed with acute pancreatitis, a complication of the ERCP. I spent ten days in the hospital on opiate pain medication, and it took a month for my liver function tests to return to normal. I made a complete recovery and regained the six kilos I had lost!

As a routine test prior to my six-month checkup with my rheumatologist, I had an echocardiogram and a lung function test. Unfortunately, it revealed that I now have secondary pulmonary hypertension (PH).

I just do not know how much more I can handle. I have read a bit about it and have an appointment in three weeks with a cardiologist who specializes in PH. Apparently, scleroderma has shrunken the vessels between my heart and lungs. My heart has to work much harder to get the blood across to my lungs. I had been short of breath and very tired, as if someone was sitting on my chest.

On the upside, I have had no signs of return of the MALToma. I have had twelve monthly visits with the oncologist and she is happy, so I am happy. My eyes have not gotten any drier over the past two years. My teeth are falling apart, so I still go to my dentist regularly. Soon I will be faced with having all my teeth out. I really hate the dentist, so this is a big worry for me.

In the meantime, I enjoy painting and going to art classes. I paint Australian landscapes, wild flowers, and little Aussie critters! I paint on anything I can find. It is a great source of relaxation therapy.

~ Update - May 2002 ~

Nine weeks ago I was coughing and noticed a bulge just above my navel. I contacted my doctor and he sent me for an ultrasound. I was diagnosed with a large umbilical hernia. I needed that like I needed a hole in the head! He believes it was caused by the laparoscopic surgery I had twelve months ago to remove my gallbladder, as the procedure had probably weakened the abdominal wall. Within the week I had open abdominal mesh repair surgery.

Here we go again. I have had just about enough of hospitals and doctors. I spent six days in the hospital, and because of my other health problems, I take a lot longer to heal. It has been a painful, slow recovery, but I am happy to say now, eight weeks later, I am just about back to doing what I was able to do before surgery. I still have a few burning pains the doctor said could last for up to three months. I get very tired, but manage okay with an afternoon nap and early nights.

Last week, I had another test for the pulmonary hypertension. I was pleased to find out that it has progressed only marginally. I decided to go along to a beginner's Tai Chi class. Once I learn the moves I think I will benefit from it greatly. My first class was very relaxing.

I am very lucky to have a wonderful husband of twenty-eight years and a supportive network of family and friends. I do not know what the future holds for all of us with autoimmune diseases. Hopefully, one day a cure will be found. Until then, my motto is: "When the going gets tough, the tough eat chocolate."

~ Update on 03-28-07 ~

Thank you to all those women who have contacted me via my story here. It is good to be able to be in contact with others who share the same diseases.

My last update was in 2002 and I am happy to say that the pulmonary hypertension is only marginally worse, most of my other symptoms are well controlled with good drugs. Although I sometimes just look at all the medication I have to take and wonder what would happen if I flushed it down the loo one day…then I shake myself back to reality, have a coffee and get on with it.

However, I was diagnosed in August 2006, with Type 2 diabetes. I was suffering from high blood pressure and the medication was not working so my doctor sent me for a fasting glucose tolerance test which was positive for diabetes.

I tried diet and light exercise alone but that did not help, so after six months I went on Metformin. I started with two a day, then three, now I am on four a day and am happy to say it is controlled for now.

I have managed to loose 14 kilo's which has helped my blood pressure and my blood sugar.

I consider myself very lucky, as over the years since diagnosis things have not progressed as fast as I was told they would. All my specialist appointments and tests are annually now. I am able to do just about everything I want to. Sure I get tired, but a lot of that is the drugs.

I am very lucky I do not have to work and am able to travel all around Australia with my husband's work.

I hope I do not have to do any more updates, which will mean no new diagnosed problems.

Please feel free to contact me as I am only too happy to answer your emails.

To Contact the Author

ISN Story Editor: Judith Thompson Devlin

Judith 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!

This Story is Featured in 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!

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