May 17th 2015
I’ve known for some time that I might have it, but I only had the diagnosis confirmed a week ago and I still can’t pronounce the word properly. I am trying to come to terms that I actually have this strange and diverse condition that nobody seems to have heard of and it manifests itself in so many different ways. So diverse in fact, I don’t know what to expect next.
Sclero, from the Greek sklēros, meaning hard and
derma meaning skin
About a year ago I was on holiday and struggling to get into the previous years swimsuit. My stomach had become large and hard. I had been thinking that it was probably be the time to start doing something about my middle age portliness, so the hardness could not be attributed to my regular visits to the gym. The skin covering my hard protuberance was itchy, shiny with a propensity to change colour.
Then I noticed to my horror that I was developing love handles which were also hard and, to add insult to injury, the one on the right hand side was much bigger than on the left. Joy, a waistline of an uneven Michelin Man.
The Scleroderma was just another addition to my list of Auto Immune Diseases that I apparently have. The Scleroderma diagnosis was made by a Dermatologist, but I have lived with Collagenous Colitis for 20 years and arthritis for 10, now this sklɪərəˈdəːmə. I am told my condition will now be managed by a Dermatologist, Rheumatologist and a Gastroenterologist.
If you Google Scleroderma it will tell you that it is the chronic hardening and tightening of the skin and connective tissues and it is rare – 20K to 200K US cases per year. Basically I am making too much Collagen. Why? Well, I have yet to have a straight answer.
So what is an Auto Immune Disease? Thanks to the wonders of the Internet I know that it is a disease caused by the reaction of antibodies to substances occurring naturally in the body. As I am permanently fatigued and seem to have had little in the way of any helpful input from my GP, I have been taking large doses of Echinacea to boost my immune system. So, as far as I can see, I have been fuelling my immune system to attack itself.
Recently, my right knee has all but given way on me. As I have had more than my fair share of Cortisone injections in that knee over the years, a new GP suggested that I should try a course of Ostinel injections, once every two weeks. They cost a fortune but, needs must. I have also been having acupuncture on that knee and after 3 weeks, I feel some relief. Even if I don’t know if it is the acupuncture or the Ostenil injections that is helping, I had cause for celebration yesterday as I took the dog for a decent walk for the first time in a month. But you never know with Sclero-whatever, exactly what part of the body it is going to target next, inside or out.
At 03.00hrs this morning, I wake in a fair amount of pain from my hand, wrist and arm. I feels like bruised Carpal Tunnel Syndrome. So back on the strong pain killers again.
I had a blood test last week and have to wait 7 weeks for the results. No medication, no guidance, but then again, there is no cure. I cannot sit around and wait for the next, skin eruption, gastric fall out or joint pain, so I have read about ginger and turmeric being helpful, so have ordered the pills.
Googling the condition is not recommended either, given all the different ways the condition manifests itself. The Dermatologist told me that this rather dodgy little number on my back is also Scleroderma …
Now, my Mother always told me that this mark was a result of a horse riding accident I had when I was about 10 years old. She said it was a scar from the hematoma I had on my back following the fall. The Dermatologist tells me that it is Scleroderma. So I have lived with this thing for all my adult life and had no idea.
Still, I am not going to angst about it and will see what my options are when I have the results of the blood test.