Marthie D: CREST Scleroderma

My name is Marthie and I live in a small town, which developed around a chemical and petrochemical industry in this area in South Africa. The town itself is close to a big river, the Vaalriver, and in summer is quite lush and green, although winter finds everything quite grey as we get a lot of frost here.

I am a single parent for the last ten years and have three kids: a son who is age twenty-seven; a daughter who is twenty-three; and the youngest, a son who is fifteen.

After the birth of my second child, I started feeling tired. I went to several doctors and had lots of tests done. In the end all that I achieved was that they probably thought me to be a hypochondriac. Thereafter I just let matters be. This lasted all of eighteen years.

Then after potting some plants for the company I work for, my hands started itching like mad. I began to notice that my hands turned blue and then white. Not knowing what it was, I joked about it! The itching nearly drove me insane and the doctor prescribed cortisone, which I did not like to take but had no option as the itching was really bad. I was referred to a dermatologist, who prescribed cortisone and many different soaps and creams. This was very costly with no positive results.

At this time I was busy studying for my national diploma in safety. Trying to study with this itch straight from hell was no easy task and some days I wanted to take a knife and cut and cut to rid myself of this horrific thing.

Eventually a new general practitioner arrived at the doctor's practice group which I go to. Young and very bright, he listened to all the pains and aches and voila! He said he thought he knew what was ailing me! He opened a thick journal and says a name that in itself sounded scary, "Scleroderma." He referred me to a specialist for confirmation. Not knowing what this big word meant, I went to our on-site health practitioner to borrow her medical dictionary. What I found confused me more!

The Internet gave me the opportunity to investigate and do some research. This was great in the sense that I now knew what was happening to me, but on the other hand it scared me stiff. Emotionally I was very low. I was in a recently started relationship with a widower who was still emotionally sensitive from his wife's death from a sudden illness two years earlier. This meant that I had to keep all this inside and try and work through my own shock and stress. When I eventually started being negative and a bit emotional, the support was not there and I was still alone.

At least now I knew that any new symptoms can be identified as the 'normal' phases of the development of scleroderma. My face started showing signs of the nice red blotches (telangiectasia) that ordinary foundation does not cover, so I had to go hunting for a foundation that could cover these spots, but at a premium cost, of course. At least makeup helps to keep the pretense going.

My mouth became much smaller. From time to time chewing became a real pain, as my jaws would go into a spasm and that is really painful. I did not know whether to clutch the jaw or hit it but at the same time my eyes are full of tears and I would literally stamp my feet. Even a mouthful of water could start this! Swallowing became harder as the drier food-stuffs tend to get stuck and I would have to have a glass of water or liquid at hand to wash this down.

My hands became so tender in all the joints that a handshake became out of the question. Most people really like a firm handshake, which can reduce me to the feeling that at any moment I was apt to wet my pants. Bottles and tight jar lids are the most frustrating items that exist! For the life of me I cannot open them. Coke bottles with the screw caps sometimes oblige, but mostly I have to find someone to assist me. I think this is one of the most irritating things for me, as before I was the strong person who assisted other people and could haul and carry heavy things around with ease. Now I am a helpless person who constantly needs to worry people for assistance.

My muscles are so useless that getting up from a squatting position is impossible without help or at least some support to grab and pull myself up. You should see me trying to get up from sitting on the floor! Like a toddler that just learned to walk, I first roll over on my knees, crawl to a support structure and then haul myself up, bit by bit. At least a sense of humor helps.

Raynaud's makes it difficult for me to work with anything remotely clammy or cold, but washing has to be hung out and veggies need to be prepared. Gloves help a lot and I have learned to use these as much as possible.

I used to garden a lot and loved the feeling of crumbling earth between my fingers. Now I dare not touch any weed or soil without the necessary protection for my hands or I suffer terrible itching and my hands crack open. That is also another painful experience, as these cracks are always on the fingers I use the most, and thus a continuous problem.

I have just applied for a new driver's license, for which fingerprints are taken. Eventually I had to get a doctor's letter to confirm that I have a skin problem and that the lines and cracks on my fingers are because of this. Now I have a driver's license card which states 'no prints'. (Does this mean I can perhaps have a new job? Shall we say, that of thief or any such one, seeing that I have no prints? Ha-ha!)

Lately reflux has become a constant problem for me, but thanks to my research, I now try sleeping on my left side with good positive effect. I must say that reading some stories and researching this 'bug' really has helped me to be able to manage my scleroderma so much better! The tips that are given are helpful and can be applied to make life somewhat easier.

In South Africa, scleroderma seems to be unknown as ninety-nine percent of people have not even heard the name. I hope that by establishing a web site locally with the help of your webmaster, we can change this, thus enabling the people to come forward and share their stories, compassion, tips and give some emotional support to each other. We really need to get more awareness going around this syndrome. To try to explain to people what it is all about, is really frustrating as they cannot understand or fathom all the aspects of scleroderma and what it does to you.

Five years after the itching started, I can see why most of the scleroderma patients say that the road until the proper diagnosis was made was the most difficult in some sense. We are made to feel like a fraud as different symptoms keep surfacing and we do not know what is going on.

Now that I do know, it is still hard to cope some days, as life seems to like throwing a curve ball. Other days, when my energy levels are a bit better, the sun is shining brighter. I really appreciate things a lot more and I am trying hard to feel less stressed by daily problems. I do not always achieve success, but by constantly trying, I do make some progress.

Let's share our 'bug' experience and become a scleroderma family, knowing more about our bodies and how they work, than most other people.

SWAN SONG
When darkness closes
And rays of hope diminish
Turn around and look
To find the smallest speck
Of life's golden rays that's left
Take a good grip on it
Cherish every last bit
And it will brighten all
Your world that is left
Enhancing every flower and tree
And you and me.

With lots of love and warm hugs to all the patients, caregivers, family and friends who make up our world.