I'm Robyn, a 35 y/o single mother of 3 and a step mother of 2. My children are 12, 8 and 1. My life is rich with family. I have led a very active life including traveling, coaching basketball and being the captain of an adult volleyball team. I have worked since I was 16 and am an office manager for a catering company. Then a year ago I was diagnosed with a chronic disease.
After divorce & unexpcted pregnancy (failed IUD) I find myself two weeks early at the hospital being induced for labor. The baby's heart rate has dropped a few times. Having had no complications during pregnancy, labor was no stress until they broke my water. I was then rushed in for an emergency c section because there was a knot in the baby's umbilical cord. Only 1% of babies are born like this. My beautiful son is born Aug 13th, 2014.
Two weeks later & a dear friend is visiting for the evening when suddenly my left knee starts hurting, then the right. I go to bed early barely being able to walk. Meanwhile I had a severe rash that several Dr's had attempted to treat. It was very noticable on my arms & legs. I went to urgent care then hospital thinking I could have a blood clot in my leg. Then the fevers start. Horrible fevers with drenching sweats at night that would spike as high as 103. Severe joint pain pagues my body with stiffness so severe I can no longer move without excruciating pain. Depression sets in and I wonder how I could live like this.
What was going on?
After a visit to my rheumatologist I was diagnosed with Still's disease. It is not uncommon for a woman to be diagnosed with an autoimmune disease after birth as it turns out. Adult Stills disease is a rare type of arthritis that has a sore throat, salmon-colored rash and a high fever that spikes once or twice a day. Severe joint pain develops a few weeks after these initial signs and symptoms. Adult Still's disease is an inflammatory type of arthritis, similar to rheumatoid arthritis. This inflammation can destroy affected joints, particularly the wrists. This rare autoimmune disease effects 1 in 100,000 people. This was a chronic diagnosis. Life long, that's hard to wrap my mind around.
The chronic pain of rheumatoid arthritis and adjusting to a new life have been very difficult. There have been days i have been unable to walk. With 3 kids to care for and an illness to address I am exhausted. A baby is not conducive to a restfull sleep schedule. Doctors appointments, pharmacy visits, steroids, biologic subQ shots, infusion, pain management, and therapy have become part of my normal life. On bad days I'm thankful for the community of people with #chroniclife I have found online. They offer support, compassion and wisdom about this forgin life. My children can always save me from the sadness that comes with daily pain. I have been blessed with wonderful parents and a medical team that cares and listenes. I am still in pursuit of my personal medication cocktail that will take me into remission. 4 months ago I was able to achieve what I call controlled symptoms with significant less daily pain. My pain now is mild in comparison to that 6 months ago. Some days i have more pain but am able to cope. Most days I fear the future as this is not what I had imagined for my life. Some days I feel guilty of burdening those I love with my disease. Hopefully in time I will come to terms with my reality of having a chronic disease and find peace.
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