My name is Christene and I have been living with Limited scleroderma for five years. I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life. I felt I was being punished and blamed myself for not looking after my health.
I did not have any real support as my parents lived in Western Australia and I had just started a relationship. It was very hard for my partner to cope with this new illness and it put a lot of stress on the begriming of our relationship but somehow we coped and stayed together for four years.
My main fear was what was I going to do with my life. I was so young and did not know how was I going to cope with scleroderma. In 1999, I was admitted into a hospital three times with very severe ulcers on the tips of my fingers. At that time I was terrified of needles and had to have quite a few, so I soon got over those fears and have become quite used to regular blood tests.
In the last five years I have had three operations on my right index finger, two on my left index finger and most recently two on my right thumb which was difficult as I am right handed. I have also suffered from a blood clot in my right leg, fluid on my left lung, and reflux esophagitis.
I believe that I can live a full life even when things get me down and although I do not have a career set in my future, I know I can succeed in anything I put my mind to. Although it has taken me five years to accept this illness I have remained strong and know that I am not going to die young, well, at least I hope so.
I know scleroderma is hard to get used to, and I have found it difficult to come to terms with it. I believe we can succeed at anything we put our mind to, as long as we remain true to ourself and stay calm when things go wrong.
This is my short story and I hope it may also help some other scleroderma sufferers with the journey in life, love and the big wide world.
Christene New email address needed 08-06-09 SLE Old Email Prefix: jrfrench2002 Story edited 12-15-04 Story posted 12-16-04 SLE ISN Senior Artist: Sherrill Knaggs Story Editor: Judith Devlin |
LINKS Digital (Finger) Ulcers Fluid on lung (Pleural Effusion) Limited Scleroderma PDF Brochure: What is Scleroderma? Reflux (Heartburn) Types of Scleroderma What is Scleroderma? |
Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
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!
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