How I finally got to grips with the scleroderma in my body
The first time I noticed that something was different and no longer true was in December 2016. For inexplicable reasons my whole body suddenly hurt. It's like I've got a very bad aching muscle from head to toe. In addition there was a leaden tiredness and the fact that my fingers suddenly turned snow-white in the cold and as soon as it was warm again, blue, then red. I only thought it was harmless for a very short time and classified it as the result of a scarlet disease that I had shortly before. After only a short time, however, this happened several times a day and the pain in the whole body became worse and worse at the same time.
My initial doctorodyssey
What followed was a six-month medical odyssey until the summer of 2017, during which I met all sorts of specialists, including rheumatologists, who sent me home with ever new diagnoses and medications, but nothing really helped.
In addition to the already existing complaints, the fingers of my hands deformed and I could hardly move anymore. I needed help with everything. When dressing, when grooming, when walking, when eating. I was too weak in places to hold a fork and shortly afterwards I ended up in a wheelchair. I was very desperate.
Diagnosis: Systemic sclerosis
My partner's research for help then brought us to the Medizinicum to see Dr. Ahmadi in the summer of 2017. Dr. Ahmadi examined me thoroughly from head to toe and diagnosed me with systemic sclerosis. I had already read about it and was terrified of how the disease would progress. Dr. Ahmadi reassured me. He told me clearly and honestly that although my condition was very serious, treatment could only be successful in the long term and would be exhausting, but that we would manage. He immediately initiated a therapy consisting of the right medication, infusions, weekly occupational and daily physiotherapy and regular visits to the doctor and blood count checks.
Unfortunately, I found Dr. Ahmadi only after months of unsuccessful search for a specialist for this rare, treacherous disease. His diagnosis was that the sclerosis had already attacked the stomach, lungs and kidneys. I got on dialysis. I also needed a wheelchair because I couldn't walk anymore. I lost a massive 30 kg. Artificial nutrition was initiated and a nursing service was ordered. Additionally after a short time a palliative team, because sometimes it looked as if I would not win this fight against systemic sclerosis. But at the same time I felt an irrepressible will to live and survive. I'm the mother of a little son.
Therapy: Always hold out!
Dr. Ahmadi has always motivated me to continue the therapy, even though I myself felt too weak at times. My partner helped me day and night, was always by my side. My mother, my family doctor, who visited me regularly, the pastor of our community, the nursing service, the occupational therapist and my physiotherapist, who came daily, also joined me. Not to mention friends and acquaintances. Above all, however, the love of my little son and the unconditional will to be able to accompany him as a mother as he grew up kept me going.
After a year, in the summer of 2018, I was able for the first time to walk a few steps in the house with a walker. Together with my physiotherapist I increased the number of steps daily. We began to integrate everyday activities into physiotherapy. To take a glass out of the cupboard, to hold a fork and a knife independently, to take the step into the shower alone. In July 2018 I was able to leave the house for the first time after one year. I managed to get into the car and take a seat in the passenger seat, albeit with help at the beginning. A first short excursion after one year.
It's so worth it to hang in there and fight.
Today, in autumn 2019, I am still in therapy, which I would not like to miss either. I also still have physiotherapy, although no longer on a daily basis. Systemic sclerosis cannot be cured. But she's treatable. I can do everything on my own again. I walk without help, can drive a car again, shape my everyday life and above all take care of my child. Even if it will never be the same again as it was before - it can't be, because it is a chronic disease - life with systemic sclerosis is also worth living and beautiful. For all the setbacks a person can confront with this disease: It's so worth it to hang in there and fight.
Dr. Ahmadi and his team saved my life and I am infinitely grateful for that.
