I was diagnosed in 2000 at the age of 35. At the time of my diagnoses I worked as a Parks and Recreation Director, I curled a couple of times a week, I didn’t smoke or drink. I ate relatively healthily. Then, suddenly, I am in the hospital fighting for my life.
But, I guess I have to go back just a bit to tell you my symptoms which started the previous year. The first symptom I experienced was fatigue; bone tired fatigue. I would come home from work and go to bed. I just didn’t have any energy or stamina to do anything more. I went to my family doctor, had blood work done which came back as normal, so I continued to monitor my symptoms and was asked to return if anything new happened. In March of 1999 I went to see a rheumatologist, however again my visit proved to uncover nothing specific. I was not very symptomatic so was told to come back if anything changed. I should also mention that I have had Rhynaud’s since I was a teenager. By mid April I showed up at my doctor’s office with swelling in my lower legs, which looked like stove pipes. I also was experiencing swelling in my hands, was experiencing shortness of breath and a general unwell feeling. I went back to the rheumatologist the next day and was immediately diagnosed with Scleroderma. I remember my first thought was “Sclero what?” but also feeling relieved that I was not crazy and that there was something actually wrong with me. So, with that information in hand along with a arm load of meds I returned home. I was not interested in knowing anything about the disease. I had meds, a diagnoses and was good to go.
However, the first weekend in May, my life changed forever. I had spent the weekend sitting as I had trouble breathing and no energy. On that Monday morning I went to see my family doctor who immediately sent me to the hospital. Not sure what was happening I was kept there overnight. The following day I was sent to another hospital because my condition had worsened. After that I don’t remember much. I awoke a few days later and was pleased to see everyone. I spent a couple of weeks in the ICU Cardiac Unit, then my kidneys failed. I started dialysis and was transferred to the kidney floor for care. I eventually had surgery to start peritoneal dialysis and in June I was sent home. Needless to say it was a huge adjustment for me to go from a workaholic, active person to not being able to move far without effort. The whole experience was humbling for me.
I spent the next 9 months or so confined to home, traveling only to doctor appointments and trying to get well. After 10 months or so my kidney function returned and I was able to come off dialysis. What a day that was and how grateful i was to be able to pee!
I would say that over the next two years I worked hard at recovering and gaining my independence. I recovered the ability to walk distances without getting winded, I was able to do house work and personal hygiene. I was going to make it.
Since, my diagnoses I have had some health issues and spent time in the ICU again for blood pressure problems but I have worked very hard to become the healthiest person I can be. For me, this means eating right, exercising, thinking positively, living with no stress and taking care of business everyday. This is not easy all the time. For one, I do not like exercising, I don’t feel better after being physically active, but I do enjoy living and to do that I must exercise my body, if for nothing else but to be ready for the next battle with this disease. I will be ready. I don’t need much time to spend in “self-pity” before I am reminded how lucky I am to have another chance at living. As my mom says, “this is no dress rehearsal, so live well and keep moving”.
Today life is good and I have a whole new appreciation for it!