In May of 2001 I noticed unsightly dry skin on my knuckles. I went to my dermatologist who also noticed the bluish colour of my fingers. She suspected that I have 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 auto-immune 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 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 - flare-up(s) of scleroderma in the past? They also function below ‘normal’ for my age, weight and height, but then they never did because I’ve had mild asthma since 1996 and have to take Seretide in the morning. My rheumatologist referred me to another rheumatologist who specialises in scleroderma

Dr Helen Englert has devoted her post graduate studies in scleroderma research. The number of letters after her name assured me that I’m in good hands. My assurance was confirmed when she greeted and ushered me into her surgery: the warmest, most sympathetic, personable, reachable and caring medical specialist I’ve ever met - and trust me, I’ve encountered many! She not only diagnoses my physical symptoms but she also approaches my condition holistically. She was pleased to know that I see a psychiatrist for counselling. In addition to the tests I already underwent, she also ordered a skin biopsy and herself performed nail fold capillaroscopy. The results were nothing to be alarmed. 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?”, besides, what can I do? There’s no point in getting angry and fret. I cannot get rid of it because there’s 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 three-year nasty and phenomenally expensive divorce case. But a new life was not to be. I admitted myself to a mental clinic for 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’s happening all over again. I’ve always held the convictions of not to say ‘never again’ and that Machiavelli was wrong when he said that ‘man is basically evil’. I guess I was just a trusting, gullible and naïve person - not to mention stupid! (all the personality traits I despise and strive hard to avoid, and obviously failed yet again).

The turning point was 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 kick in the butt 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, is 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 Jesus and those Sunday school classes came flooding back. I contacted an Anglican church I visited two years ago for a six-week course on Luke (ironically it was my cheating boyfriend who introduced me to the church!). They sent two women counsellors to see me at the clinic. My relationship with the Lord recommenced. On Sundays I attended church and on Tuesday evenings I attended Bible study. I couldn’t be happier: I gained knowledge of the Bible as well as formed friendships with other Christians. Spiritually I was developing, and for the first time in 30 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 2. 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’ve 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’ve been sunbaking during my overseas trip because my skin was darker and reddish in colour. Without hesitation I booked an appointment to see Dr Englert who quickly organised the tests I had the previous year as well as prescribed captopril 12.5mg twice daily, 15mg oral methotrexate weekly, 40mg prednisone daily, 5mg folate 4x/week, 600mg calcium twice daily and 70mg fosamax weekly. 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 6 months saw me having monthly blood tests. In April 2003 I had to have a much higher dose of methotrexate by injection once a week for 5 weeks. On the day of the injection and the following day I would feel extremely sick. I could only sprawled on the bed or couch and remained 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’m also the heaviest I’ve ever been, although Dr Englert said that once I’m 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 didn’t have the energy to go out, in fact, I simply could not be bothered. To me, socialising required so much energy and effort - 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 didn’t have confidence driving at night because of poor vision - as well as a general lack of confidence in driving because I found it difficult to focus and therefore afraid that my reflexes are 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 has now developed into aggressive systemic diffuse.

In early October I was back to lower dose of oral methotrexate and prednisone. My pulmonary tests showed stabilisation, 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 Sjögren’s syndrome. My lethargy level was up and the swelling and tightness of fingers started again. I also noticed that my lips are now thinner, facial cheeks have hardened, and for the first time in my life, cellulite on my legs! When I speak, my voice quickly becomes hoarse because of the dryness, and I would have dry coughs. The mouth also feels uncomfortable/tight when I talk.

When I told Dr Englert that my psychiatrist has prescribed 100mg Zoloft daily 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, that is what’s important. Your body is not functioning well temporarily and I‘m 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’m depressed because I can no longer do the things I used to do. I’m 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’m 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’m free to do the things I’ve 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’ve been cheated by SD.

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 anaesthetist 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. Pre-cancerous cells were identified and treated. So now, as well as all those scleroderma-related tests I have to undergo biennially, a Pap smear is added to the list for the next two years. Attitude-wise I couldn’t 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.

2004 began with an interesting and relaxing holiday travelling 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’ve 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 Boeing 747 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 can’t even perform full-time work. Moreover, Dr Englert was not keen on me falling 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 recommence power walk in the morning, and sometimes in early evening; next week I will reattempt 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 isn’t satisfying. We have placed our relationship in the Lord’s hands and have been praying for guidance. On the telephone he told me that he does not want to proceed with the marriage. The reason being: with me, he cannot experience parenthood. What can I say? It’s true. So I told him that we should part because there’s no point in continuing the relationship. He suggested to keep the status quo but I declined - the present situation does not allow us to grow as a Christian couple. I wanted a clean break so that I, and him, can 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 wasn’t interested, now that I can’t/shouldn’t, he did a u-turn.

At 45, I’m 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 the Lord, more than ever
- Taught me to trust the Lord
- 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 non-Christian human beings)
- Slowed me down so that I can smell the roses
- Most importantly, made me realise (ironically my ex-boyfriend wrote on the front page of the Bible he gave me for Christmas in 2000): the most important relationship is with Jesus Christ.

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 Father, medical team, family and friends.