Marina: Diffuse Scleroderma
At forty-five, I am single, have three well-adjusted adult children, as well as a conviction that despite the low quality of life SD gives me, it has also brought me closer to my faith…
It is February 1, 2004, and here is my story.
In May of 2001 I noticed unsightly dry skin on my knuckles. I went to my dermatologist who also noticed the bluish color of my fingers. She suspected that I had Raynaud's and sent me for a blood test. The results confirmed that I have scleroderma. I was sent to a rheumatologist who spent one and a half hours checking me while explaining this rare and incurable autoimmune connective tissue disease in a nut shell.
I came home with a pamphlet about the disease and a handful of referrals to undergo pulmonary function tests and HR CT scans, ECG and echocardiogram, urine tests for the liver and kidneys, and more blood tests. My head was reeling with the amount of information I had to process and the tests I had to undergo. I had to fit in all these appointments with my teaching schedule at the university and conferences with my divorce lawyers.
Two weeks later I went back to my rheumatologist to find out about the results. My organs functioned well except the lungs which have minor scarring. Is it due to flare-up(s) of scleroderma in the past? My lungs also function below normal for my age, weight and height, but then they never did function normally because I have had mild asthma since 1996 and have to take Seretide in the morning. My rheumatologist referred me to another rheumatologist who specializes in scleroderma
Dr. Helen Englert has devoted her post graduate studies to scleroderma research. The number of letters after her name assured me that I am in good hands. My assurance was confirmed when she greeted and ushered me into her office. She is the warmest, most sympathetic, personable, reachable and caring medical specialist I have ever met, and trust me, I have encountered many! She not only diagnosed my physical symptoms but she also approaches my condition holistically. She was pleased to know that I see a psychiatrist for counseling. In addition to the tests I already underwent, she ordered a skin biopsy and performed nailfold capillaroscopy. The results were nothing to be alarmed about. My condition was diagnosed as mild borderline limited CREST with possible lung involvement. However, I thought it best that my children were informed. At this stage I was only prescribed 5mg prednisone daily which I took until the swelling of my fingers subsided at the end of November. Psychologically and emotionally I underwent a period of "Why me?". It did not last long because I turned the question into "Why not me?" (and besides, what else can I do?) There is no point in getting angry and fretting. I cannot get rid of it because there is no cure. All I can do, with Dr. Englert's help, is to manage it and get on with life as best I could and accept the fact that life will now be different.
The commencement of 2002 promised a new life as the divorce settlement case concluded. I thought nothing of my new ailment because physically I felt fine, the swollen fingers were just an annoyance. Mentally and emotionally though I was exhausted and a wreck due to the long, nasty, and phenomenally expensive divorce case. But a new life was not to be. I admitted myself to a private mental clinic for a nervous breakdown and more importantly, to prevent myself from self-harm: I found out that my boyfriend has betrayed me. I simply could not believe that it was happening all over again. I have always held the convictions of not to say 'never again' and that Machiavellian was wrong when he said that "man is basically evil". I guess I was just a trusting, gullible and naive person, not to mention stupid! (All the personality traits I despise and strive hard to avoid, and obviously failed yet again.)
The turning point came when I received a visit from my twenty-one-year-old son. The first thing he said to me when he saw me was, "Why Mum? Can't you cope?" It was the motivation I needed! My own child questioned my coping-skills? His super-mum, whom he reluctantly had to model because his own father was too busy with work and social life, was now no longer invincible?
The next day I prepared myself to leave. The first thing on my list to do was get spiritual help. Memories of my parents' devotion to religion and those Sunday school classes came flooding back. I contacted a church I visited two years ago for a course (ironically it was my cheating boyfriend who introduced me to the church!). They sent two women counselors to see me at the clinic. On Sundays I attended church and on Tuesday evenings I attended bible study. I could not be happier. I gained knowledge of the bible as well as formed friendships with others. Spiritually I was developing, and for the first time in thirty years, I was content with the world.
In June I went to visit some old friends from university in Kuala Lumpur. It was there when I felt swelling and tightness of my fingers. I assumed it was the heat and humidity which caused the swelling and thought nothing of it. I continued my trip to Singapore and Indonesia, enjoying the freedom and feeling very blessed.
In August I returned to Sydney and commenced teaching of semester two. I asked my rheumatologist to put me back on prednisone. By September my body was on fire when I attempted to sleep at night. In the morning I felt like I had been hit by a truck. During the day I could only experience pain and extreme lethargy. I also began to notice that my vision was failing and in class, I would take time delivering my lectures as I had to search for words in order to string sentences together. Some friends began to ask whether I had been 'sun baking' during my overseas trip because my skin was darker and reddish in color. Without hesitation I booked an appointment to see Dr. Englert who quickly organized the tests I had the previous year as well as prescribed many medications. The tests showed that my heart, liver and kidneys are fine, but not so with my lungs. The HR CT scans showed progression of basal interstitial fibrosis. Calcinosis and shininess could be seen around the lower neck area. The level of creatine kinase was also significantly high, hence the myositis. I was unable to blow dry my hair or lift anything. Thankfully my blood pressure is normal. Dr. Englert initially suggested intravenous cyclophosphamide instead of methotrexate but I declined because I was terrified of the side-effects.
The next six months I had monthly blood tests. In April 2003 I had to inject a much higher dose of methotrexate once a week for five weeks. On the day of the injection and the following day I would feel extremely sick. I could only sprawl on the bed or couch and remain there. During this period I also had recurrent yeast infections. Gradually the treatment eased my myositis and lowered the creatine kinase level, but not the lethargy. In the mean time I gained a lot of weight and my facial cheeks were stretched, shiny and chubby. I was also the heaviest I have ever been, although Dr.Englert said that once I get off prednisone, I should get my svelte figure back. House cleaning which used to take two hours, now took the whole day because I had to rest every half an hour. I did not have the energy to go out, in fact, I simply could not be bothered. To me, socializing required so much energy and effort, that gone was the vibrant, vivacious party girl and social butterfly.
The worst thing was that I could no longer go to church and bible study because of the lethargy and I was not confident driving at night because of my poor vision, as well as a general lack of confidence in driving because I found it difficult to focus, and was therefore afraid that my reflexes were slow. For the first time in my teaching career I took a couple of days of sick leave and sprawled on the bed at home. My mild limited CREST had now developed into apparent aggressive systemic diffuse scleroderma.
In early October I was back to a lower dose of oral methotrexate and prednisone. My pulmonary tests showed stabilization, and the creatine kinase level was going down. I responded to treatment! However, in the last weeks of October I suffered from dyspnoea, very dry eyes and mouth, as well as mild gastro-oesophageal reflux. I wondered if I now have acquired Sjogren's Syndrome. My lethargy level was up and the swelling and tightness of fingers started again. I also noticed that my lips were now thinner, facial cheeks had hardened, and for the first time in my life, cellulite on my legs! When I spoke, my voice quickly became hoarse because of the dryness, and I would have dry coughs. My mouth also felt uncomfortable and tight when I talked.
When I told Dr. Englert that my psychiatrist had prescribed medication for depression, she acknowledged that it is common with chronic illnesses. She then asked me what is happening in the relationship front, to which I answered, "What man in his right mind would take a woman who has a chronic illness?" She held my upper arms, looked me in the eyes and said, "You have a beautiful heart and that is what is important. Your body is not functioning well temporarily and I am trying to help you get a good quality of life." My eyes welled up.
My early positive outlook disappeared because now I physically feel rotten. Mentally I am depressed because I can no longer do the things I used to do. I am grieving over the loss of my energy and agility. My lungs would feel like they are on fire when I walk on a slight incline. I have to sit down after I shower, for goodness sake! Now that I am no longer under the clutches of a psychologically abusive, chronically unfaithful and pathologically lying husband, as well as children who are now well-adjusted adults, I am free to do the things I have always wanted to do; travel, start a business and be my own boss, politics and most importantly, doing God's work in developing countries. Having been an active person all my life (working full-time, studying, raising three children - mostly on my own), I feel that I have been cheated by scleroderma.
November saw my faith tested to its limit. An abnormal Pap smear result landed me on the operating table for a cone biopsy. Dr. Englert fretted with the accommodating anesthetist when I telephoned her to inform her that I have to go under general. But the surgery was fine and the pathology result was not a death sentence although it potentially could have been as pre-cancerous cells were identified and treated. So now, as well as all those scleroderma-related tests (how expensive they are!) I have to undergo biannually, a Pap smear is added to the list for the next two years. Attitude-wise I could not care less about this latest problem because having scleroderma and its secondary syndromes are shocking enough. Cervical cancer is just another shock to add to the list.
The year 2004 began with an interesting and relaxing holiday traveling around the picturesque north coast of New South Wales with my off-again and on-again boyfriend. He talked of marriage and spending the rest of his life with me. I have heard it all before, many times, so my excitement level was pretty neutral. We had numerous and long discussions about fundamental issues in a marriage. Both of us are not young, so between us we have enough baggage to fill a Boeing747 cargo hold. One of the issues, of course, is SD. He is well informed of my condition. I have warned him that one day I may not be able to earn an income and will depend on him financially and physically. I now cannot even perform full-time work. Moreover, my doctor was not keen on me getting pregnant. Age and long-term medication are against me.
After a week of relaxation I returned to Sydney. My boyfriend and I spent these last three weeks on the phone, fax machines and emails, in an attempt to iron out our issues. Meanwhile, since my return, physically and mentally I feel great. After an absence of two months, I recommenced with a power walk in the morning, and sometimes in early evening. Next week I will re attempt resistance training at the gym. My dyspnoea, lethargy and depression seem to be under control. Last Sunday I attended church to the delight of my pastor and friends.
Three nights ago my boyfriend telephoned. Previously we both agreed to resolve the situation of our relationship by the end of 2003. We have been in a relationship for five years and the last two years have been conducted in distance mode which just is not satisfying. We have been praying for guidance. On the telephone he told me that he does not want to proceed with the marriage. The reason being that with me, he cannot experience parenthood. What can I say? It is true. So I told him that we should part because there is no point in continuing the relationship. He suggested to keep the status quo but I declined as the present situation does not allow us to grow. I wanted a clean break so that we can both move on with our lives.
So, my illness was the main contributing factor in the break-up of my relationship - another reason for hating the illness(?). What hurt most I guess, is that all along, all these years, my ex-boyfriend has given me the impression that he was not interested in having children. When I could and wanted to, he was not interested, now that I cannot and should not, he did an about turn.
At forty-five, I am single, have three well-adjusted adult children, as well as a conviction that despite the low quality of life SD gives me, it has also brought me closer to my faith, more than ever, taught me to trust in Him. It has brought me closer to my sister, brother, sister-in-law, nephew and nieces, made me more appreciative of my friendship with Jan and Keith (former work colleagues and bosses as well as beautiful human beings). It has slowed me down so that I can smell the roses.
His love has given me inner peace, strength and hope. My mother used to say, frequently, that I am blessed. I agree with her. I have a wonderful eleven-member medical team, family and friends.
~ 8 February 2004 ~
Yesterday I found the following extract in a reply to a sufferer's plea for help on a Scleroderma Discussion Group web site. The sufferer is a twenty-five-year-old woman who has just been diagnosed. She is terrified and in particular worried about not finding a partner, ability to get pregnant, etc. It reminds me so much of my situation. My ex-boyfriend, while I sympathize with his predicament, dumped me primarily because I cannot have children. He made me feel like I am just a baby-machine and now that I can no longer function, I should be disposed of. I also believe that he sees me as a liability. My earning capacity now is zilch – the money-making machine no longer functions, so I was disposed of (his email to a male friend three years ago stated how attractive I was because of my earning capacity). This is an extract from Allan's reply,"Lastly, please do not give up hope on finding a mate and having a family. I know that is easy for me to say, since I am married. Believe it or not, there are men in this world who are looking for more than a "trophy wife" – there are men who look inside rather than outside, men who value and seek out women of intelligence, integrity and compassion. There are men who want a woman with a kind heart and a gentle spirit, not this week's winner of the "hot bod" contest. You do not want a guy who only looks for outer beauty anyway, because outer beauty will ultimately fade, and then what? As with scleroderma, trust in God, the universe or however you think of "the higher power" to guide you and provide answers."
The writer is a forty-six-year-old man who was diagnosed with scleroderma in 2001. His reply strengthens my faith in men, there are genuine ones around. I am very sad to learn that my personality (inner beauty) is not enough for my ex to take me on as a partner.
On my visit to my rheumatologist last week, I told her what happened. She was shocked, upset, said, "It's him, not you," and hugged me. She also said, "You are not good with choosing men, are you?" My doctor is happy with my condition, although quite concerned with the newly apparent Sjogren. She wanted me to see Professor Dennis Wakefield, an immunologist at Prince of Wales Hospital for management of this secondary syndrome.
Last night, while on a visit to her father, my youngest daughter told my ex-husband of my illness. She had no choice really because she wanted her father to support her financially again this year for her second year of university. She had my approval. I resigned to the fact that I should be humble and not be embarrassed of my illness. My daughter told me that her father seemed upset and asked her to give me his regards when he dropped her home. This gesture prompted me to forgive him, a very good move if I want to move on with my life; it is also what I wanted me to do all along, to forgive others, a trait which does not come naturally to me.
I hope my story can enlighten other sufferers and caregivers of this awful illness: what to expect, look out for, treatment and how it also affects you psychologically, bearing in mind that it affects sufferers differently and treatments might work for one but not another. One thing that is definite though, you will find comfort, strength and hope in your faith, as I do.
To Contact the Author
| Marina New email address needed Old Email Prefix: mpaath New email address needed 07-18-06 SLE Story posted 2-20-04 SS Story Artist: Judy Tarro Story Editor: Judith Devlin |
LINKS Cancer and Scleroderma CREST D-Penicillamine Myositis Pregnancy and Scleroderma Raynaud's Scleroderma Sjogren's Syndrome Systemic Diffuse Scleroderma |
ISN Artist: Judy Tarro
Judy Tarro, ISN Artist, created the digital photo to illustrate the story on this page.
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!
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.