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Pam: Systemic Scleroderma for 42 Years

Pammy passed away September 1, 2014. We all miss you, Pammy!

I have big hugs for Pat, my twin sister. She is my medicine without drugs, my laughter, my hands, and my helper. When she feels my pain, she will take a four-hour trip with no complaints.

PamMy story began in 1972. This part is relevant to my diagnosis. Five months after my marriage broke down, my ex-husband took my seven-year-old son from the babysitter while I was at work. Within days he allowed him to cross a busy highway. My son was struck and killed instantly. I was completely shattered and unable to attend his burial. Pat laid six long-stemmed red roses on his little white coffin.

I began a daily routine of injections and medication. Life was a complete blur. A doctor was treating me for arthritis and my whole body ached. I became allergic to many drugs: antibiotics, penicillin, and cortisone. One year later, I was no better. My skin, as well as being blotchy, became very tight and my fingers had open wounds continuously. I could not raise my arms above my shoulders.

Through friends at my workplace (animal nutritional research), I took the advice of a research scientist and sought a second opinion. The new doctor took a long look at my hands and consulted with his colleague. Then an appointment was made for me to visit a dermatologist. This became the longest day of my life. My mind went blank when the specialist took only seconds, then asked me to lie down because he had some bad news. A word was mentioned as he began to explain my rare condition that, according to records, I would be about the twelfth case diagnosed in Australia.

All I could say was, "Am I dying?" I vaguely heard: "Two years at the most. Within three months, you will be wheelchair bound. There is no cure." My only thought was, "How can I tell my only son that I was going to die so soon after his brother?" The doctor rattled on about the reason for my complaints.

I still did not know the name of this horrid disease; it had yet to register in my mind. He said he believed it was caused by a severe emotional upset. I was admitted to the hospital and went through traumatic tests.

Several weeks later I was allowed to leave the hospital with a letter and a prescription. I opened the letter. It was from my work. It said that due to my illness, I was unable to return to my duties. The next day I forced myself to go to my workplace. I had the name of my complaint written down and I gave it to one of the animal research scientists. That is when it all started happening. He immediately did a lot of reading and came to me with a bottle of vitamin E. I took his advice and began taking massive doses.

Within three months I was walking back into the hospital. The doctors were amazed. They patted me on the back. Examinations proved that the disease had arrested at my knees. I thank my office staff for all the time they put into pushing me around on a bike, and also for the Gene Pitney and Village People tapes to which they made me dance every morning, afternoon, and during lunch breaks.

Each weekend, I went dancing. I was so concerned because I did not want to end up in a wheelchair. I then had all my mobility back in my lower legs, although the pain in other parts of my body was very severe.

My son went on through his schooling. He began an apprenticeship as a cabinetmaker. I decided to further my studies with a poultry husbandry course. Studying played a little minor havoc with me. Studying with little rest became stressful, not that I would ever admit it at that stage of my life. I was still not taking any medication for scleroderma, but was carrying on, watching my diet intake of heaps of fruits and vegetables and vitamin E capsules.

In 1980-1981, my son was sent away to the country on a job that was quite a distance from me and was unable to come home daily. Unfortunately, I suffered a muscular breakdown. Unable to move from my bed, I laid for four days without food or water. I was on leave from my work, so no one was aware. Suddenly, my son walked in the door. My prayers had been answered. His place of employment had run out of timber on-site. To this day, I ask myself how they picked him over everyone else to come back with the truck driver. My son quickly called a doctor and I was admitted to the hospital suffering from malnutrition. I was "saved by the bell,"so to speak.

I sat in the hospital with an IV drip for three weeks. When I was stronger, I was able to finish my final exam paper in my poultry husbandry class with triple A's! I went on to do a computer business course. You can never give up, no matter what; this is strictly my opinion.

I have been acknowledged in many animal research papers, and I have assisted animal research scientists with experiments that have been published in various journals. I did seventeen years of judging at the Royal Melbourne Show for poultry exhibits. I also was hired for a higher position with full-time office duties, and during the last six years I was the finance officer for the Department of Agriculture in the animal research unit. After twenty-four years, I retired from this position in June 1992. Prior to this, I had joined the research unit for scleroderma at the Royal Melbourne Hospital.

The little and middle fingers on my left hand had severely deformed. They had curled inward, with the fingernails embedded into my palm. When this occurred, the bone on the little finger protruded through the skin, causing gangrene. I had a prostaglandin infusion and amputation, leaving a small stump on my little finger, and a partial amputation of my middle finger knuckle. That was in August of 1992. The prostaglandin infusion was a great success, and my wounds healed very quickly. Since then, I have had several amputations .

I became bored and took up arts and crafts with the aid of my friend, Sue, and I started going to markets each weekend. But the cold got to me as Raynaud's phenomenon is part of my condition. Because of the cold and poor blood circulation, I feel it caused my other fingers to become infected.

In 1995-1996, the tips of my left thumb and ring finger became infected. The soft tissue area was very painful. I withstood the pain as long as I could and then decided to have my second operation. With the doctor's advice, the same procedure took place. This left me with only my index finger. It has now curled under what is left of my middle finger.

I became bored again, so I went into the workforce once more as a cashier for another two years. I finally retired for good in November 1999. I attended the research unit at Royal Melbourne Hospital until the doctors who attended to me went on to further their careers or changed over to the rheumatology department. The doctor who attends to me is the same one from the research unit. I have great faith in this doctor. I had my usual visit to my local general practitioner (GP) in March 2000 for all the normal blood tests, etc. After all these years, I asked him what type of scleroderma I had. His reply: "The worst, but keep doing what you are doing because you are a battler. It could be work, vitamin E, or your positive outlook that has helped."

Scleroderma was an absolutely dreaded word to me. My life expectancy of two years was now twenty-seven years and counting, and I was able to stay in the work force until 1999. I led a near-normal life, keeping a home and seeing my remaining son, Tom, reach manhood and get married to Gillian. Now I am enjoying my grandchildren, Tim and Emily.

~ Update - May 2000 ~

You have a rundown on my hands. Prior to my operations, I must go through a prostaglandin infusion for seventy-two hours. I fear drips unless they are attached to a monitor. A tube is inserted in the side of my throat, which is directed through my veins to the heart and lung region. I have bolts on both sides of my neck to restrain me (no joke). I am scared from the time of its insertion until its removal without this! I have no healing process, so the prostaglandin dilates my veins for a good blood flow and healing. I was a first for this, and now others have followed.

I am embarrassed to mention some of my internal problems. But what the heck, I am still here. I have no control over my bowel. Each morning I use a mini-enema to clean the bowel out completely and then use a disposable napkin before I leave the house. I had many tests taken for cancer and they were all negative.

Next on the agenda is my swallowing. I am only on baby food and mashed vegetables. Professor Young informed me seven years ago, after one of my annual endoscopes, that he was only able get a baby tube down my throat. He woke me from the land of nod just to tell me this great news. My reply was, "Well, then I will eat baby food!" I am now used to the fact that I am unable to munch an apple or have a big juicy steak. Meat went out of my diet twenty-five years ago.

I have puffing (shortness of breath) from the lung deterioration. I also have a heart rhythm abnormality, found only three years ago, even though I had been complaining about butterflies in my chest from the onset of my diagnosis. I would say they put me through more echocardiograms than all of the heart patients in Australia. The heart rhythm abnormality was picked up accidentally. When the cardiologist was called to the phone, he asked the nurse to remove the equipment. She asked what was going on. I shook my head, as always, leaving things as they were. She waited for the doctor (and more doctors by this time). I was shaking in my boots lying down, as I was scared out of my wits. My greatest fear ever is of having a heart problem.

I should not worry. My dad was ninety-two when he passed away, and we were told that his heart would not stop beating even after he suffered a major stroke. It took three weeks before he finally gave in. My sister (one out of eight) told him to hurry up or she would beat him to heaven!

I am taking medication for the heart problems. I also have angina and high cholesterol, which is now under control with medication plus the usual diet of no animal fats. For the hiatal hernia, I take a proton pump inhibitor. I have been on this capsule for many years and cannot start the day without it. I take three goblets of water to bed with me each night (I cannot lift a jug.). As soon as I open my eyes, I reach for this capsule. It takes two full goblets for me to swallow it. Within half an hour, my throat feels open and there is no heartburn.

Then I take another tablet that gets my body and muscles on the move. Now I can manage to rise and get myself a mug of coffee, which I take back to bed. After I stop puffing, I sit back and watch the soapies taped the day before. At breakfast, I have another coffee with my bowl of cereal. I rest until mid-morning, either in bed or at the computer, and then it is coffee time again.

I never use medical terms, because people always say, "What?" So the only reference I make is that I have tight skin. I have intense Raynaud's phenomenon and winter is my enemy along with sudden weather changes, which play havoc in the form of vasospasms. Ugh!

I also have alopecia (hair loss), which was caused by an antibiotic. I have hairpieces from short to long and wear three-deep shoulder pads as my shoulders are as round as a ball.

I have calcinosis, which is a buildup of calcium. My general practitioner (GP) tells me that it is not due to too much calcium in my diet. I have large, hard deposits on my fingers and now one on my ankle. At times it oozes out like zinc cream from a tube, and I cannot resist picking and squeezing it — but that habit stopped when the amputations began. To dress my wounds, I clean them with tea tree oil and then apply Savlon powder and a bandage.

~ Update - August 2000 ~

Once again, I have had another operation. This time the prostaglandin infusion was the worst I ever experienced. It took several hours to insert the line. They attempted four different places in my chest. Once the line was inserted into my jugular vein, all went smoothly for the seventy-two hour procedure. Instead of having general anesthesia, I had an arm block. I was sleepy, but not quite out, so I could not feel it but, golly gee, I could hear it. It took a lot out of me (age catching up — ha ha!). During my hospital stay, I went on oxygen for several hours at a time along with some asthmatic sprays. I heard this crackling sound and was informed that it was coming from my lungs.

They tried to repair the deformed fingers on my right hand. As it turned out, they amputated my index finger to mid-knuckle. This was the one finger that was okay. It was not turned-in or deformed like my others, but it had an infection. The surgeons found that the bone had completely disintegrated to the knuckle. They then removed the mid-knuckles from the three other fingers, leaving me with my thumb as the only finger without surgery. I spent a year dealing with this. I now carry a letter with my identification from my local GP, in case I am ever asked to sign any documents.

~ Update - September 2001 ~

I developed another muscular breakdown; my fourth. Two of these required hospitalization and IV treatments, unlike the others, which I was able to stay home with oral antibiotics. Yippee, I can walk again without that darned walker and I am out of bed four to five hours a day again!

Stress will never rear its nasty head with me again. I know you all are having problems. Chin up!

~ Update - January 2002 ~

At My DeskOn January 21, I returned to the hospital to have all my pre-operation tests for further amputations. I also had a urinary tract infection. Could anything else go wrong? Further testing is necessary for treating my bowel, which is rather severe now. In Australia, when you have a disability, you are put on a list for permanent pickups to the hospital by an ambulance.

Seven days later, I was back at the hospital for the results and discussion of the colonoscopy with the specialists. I would need an operation to perform the insertion of a colon bag. After much ado with other specialists, it was decided that due to my amputations, I would be unable to manage the bag. When my caregivers are not on duty, it would be too difficult for me.

~ Update - February 2002 ~

On February 2, the local GP took a further urine test, which came up negative. Wow! Another plus! These are few and far between. My rheumatologist assured me a few days later that the colon bag would be of no use. They discussed the possibility that the vein in my left arm looked okay for another prostaglandin infusion. Let us hope so anyway.

On the morning of February 18, I woke up with severe pain in my right elbow. I waited for my caregiver as I was unable to get up from bed. She looked me over and found that my elbow had a huge, red lump the size of a tomato. She found another forming on my backbone to the right of my backside, so she called my local GP. I was prescribed an antibiotic and painkiller. The diagnosis was a bone infection. The pain medicine was only a partial relief, and the antibiotic is slowly working. I have two more days of treatment. I can now move my arm, but am still finding it hard to get out of bed.

I received a letter on February 22 regarding further amputations, which will not take place until I am completely well again. Ha ha! The next prostaglandin infusion is set for April 15, with amputations on April 18, if my infection is all clear. By then, who knows, "I may have more," I say laughing.

That is what my life is about. Laughter is medicine. Please, always think positive, keep your chin up, and smile through all your pain. It is not easy, but it helps a little. If things go wrong, smile and rest if you must, but do not quit!

~Update 01-13-05~

Last year it was discovered that my right lung had a very rapid progression of pulmonary fibrosis. I had trouble with my left lung prior to this which was only mildly affecting my disability. I never felt as breathless as I did one year ago.

My friends said I should have a check-up as I sounded terrible and was so slow at getting around. They started calling me a snail. So I say, as casual as can be, "Oh, I think it is because I am putting on weight."

Anyway, I finally had a check-up and had heaps of tests taken at my local GP. He gave me a letter to take with me for my next hospital appointment. That is when all hell broke loose. I ended up collapsing right there and then. The specialist did not hold back anything and said, "You have just handed me your DEATH SENTENCE."

Next thing I knew I had an oxygen mask on me bringing me around. "Well," I said, "You mean I am dying?" And bluntly he said, "I only give you a few months."

The wheels started turning in my head. From there they explained that the only thing that would prolong my life for a year or more would be to undergo chemotherapy (Cyclophosphamide) and steroids and to start it immediately regardless of my heart medications. Within no time I was given an IV, after much ado while trying to find a vein.

Then the worst thing happened. I am allergic to steroids which they already knew, so they whipped that line out and said, "We will hope for the best and when able put you on a small oral dose of prednisolone." They could not risk letting me out of the hospital.

Because I was taken off the heart meds suddenly, I had to be under constant care. It was a very harassing night. For four days I did not know what was going to happen.

Eventually, they said, "This treatment will have to be performed for six months." I spent nearly that whole six months with my head in a basin or toilet being sick. It was the worst thing that could happen. My heart eased up pumping out of my chest! I was on oxygen all the time.

I was always active so this to me made me near stir crazy. Needless to say, word got around and my natural path and one of the ambulance men, started me on green barley and Noni juice. I could not eat a hot meal.

After ten months my oxygen levels started to rise. Then they reduced my oxygen. I have it when I am walking or when I feel puffy and also I have to have it all night while sleeping until they do some kind of sleep pattern tests on me. My oxygen level has now come up to eight from way down to under five.

I have defied the odds to date anyway. God is the only one who knows when time is up. And furthermore, I believe it all the natural foods that I am drinking have helped me.

On January 15, 2005, I go for more respiratory tests to see if I need three more months of chemotherapy. I said, "No! If I am going to heaven I will go laughing rather than have my head continuously in a toilet basin!"

I am up and about great now and if I feel it coming on I take a puff. I never leave my home without my cylinder. I did not want to look like an oxy-welding bloke, so I bought myself a little shopping jeep I wheel around with my cylinder and nose job plugged in. People come up to me and ask about it and I just say that it is the fashion. They walk off thinking 'she has a screw loose.' I really do not care. I live life to the fullest and I get a laugh from the look on their face. Caring people are not ignorant. They see me without fingers and know I must have some kind of a problem, not surmise that I smoked myself silly and it is my own fault.

Laughter has been my medicine for thirty odd years and I intend to carry on for another ten years regardless. I overcome my pain by just saying, "Oh go away. You are only part of my problem."

But honestly, my pain is strong, but I am stronger. My pain is a big issue and I over come it by just pretending it is NO issue. That is my medicine and has been for many years and will stay that way. Never give up. Stay positive.

~ Update 12-21-05 ~

I was able to meet with Liz finally, who I met through SD World support list. We had a grand time, calling ourselves the "Aussie Floozies", as floozies are a running joke on the SD World list. Thus, we simply had to have feather boas, plus some cake to celebrate this special event.

~ Update 12-04-06 ~

First of all, I'm sorry for not being online for some time, between lot's that has happened lately. Thank you for your patience.

Today I have just arrived back from a hospital visit once more. All seems okay with my lungs with taking the Tracleer, which has helped greatly,so I am able to do lots more! I have a little liver involvement, with a slightly higher reading but not to worry as I don't have another appointment until January 2007 and my six minute walk in April, fingers crossed (if I had any, hahaha.)

But it's great living here on my own. I had my son Tommy take over the reins so he is handling many things for me. Anyway, cheers for now, since I'm very hungry have to have lunch. I will get around to annoying you all again.

Lots and lots of love always,


~ Update 09-03-2014 ~

Pammy passed away on September 1, 2014, after a 42 year battle with scleroderma. Oh, Pammy, Pammy, Pammy. You showed us all how to live with scleroderma. You never let it get the better of you! We will all miss you terribly. May you rest in very well deserved peace.

Pam enjoying some cake Pammy with Friend, wearing feather boas

To Contact the Author

Story posted 4-21-00
Updated 5-3-00
Updated 10-16-01
Updated 1-21-02
Edited 8-11-02
Updated 11-12-02
Story edited VH1: JTD 8-12-03
New Email Address: 11-22-04 SLE
Story update posted 01-28-05 SLE
Update & Photos 12-21-05 SLE
New Email Address: 12-04-06 SLE
Story update posted 09-03-14 SLE

Story Editor V1: Judith Devlin
About Scleroderma
Causes of Scleroderma: Stress
Voice Greeting from Pammy
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Voices of Scleroderma Volume 1

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: Judith Thompson Devlin

Photo of JudithJudith 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!

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