Scleroderma affects hundreds of thousands of patients, often in search of support. S.H.O.U.T. International, along with your help can provide support.
On her scleroderma diagnosis, Dee B. explains "Four years ago my life changed". Currently, "2020 is the worst year of my families life". Illness, including close family and pets, major auto accident and earthquake damages. "Thankfully, we have our faith and now we have S.H.O.U.T. International to help ease our burden".
Dee B. shares the story about her and the difficult time as caring daughter, loving wife, nurturing mother, national patient advocate, local support group leader and scleroderma patient.
-"When I was diagnosed with scleroderma at the Mayo Clinic in Rochester, Minnesota 4 years ago my life was forever changed. I have had multiple medical procedures from top scleroderma specialists across the country. Last year I had surgery to remove my colon, and now my condition has progressed to where I rely on oxygen.
The year 2020 has been the worst for our family. In February my husband, Sean was driving our two oldest children to school when their car was hit from behind and they were all injured. My daughter lost consciousness for a short period of time but was able to call 911 while Sean remained unconscious until paramedics arrived. At the hospital they were told that they had sustained back, neck, an ear injury, as well as a traumatic brain injuries (TBI), for which they continue to receive ongoing treatment. Our daughter missed much of her first year of high school and my husband had to invoke the Family Medical Leave Act (FMLA)while he underwent treatment.
Shortly after the car wreck our youngest son developed hives and rashes all over his body, a fever of 104, and he ended up in the emergency room. Although very ill with COVID19 symptoms, Idaho was not testing kids for the virus. We took him home to quarantine and treat his symptoms. Soon after, our daughter was diagnosed with pneumonia and COVID19 symptoms. Although our daughter has an autoimmune condition, she was still not tested for the virus. She was treated for pneumonia and advised to quarantine for 2 weeks. Within days of all this chaos, my father-in-law was admitted to the hospital for a possible heart attack. Upon further imagining he was diagnosed with end stage pancreatic cancer. His plan was to fight the disease, but he passed away shortly after. This immediate loss took us all by surprise and we were and continue to be devastated. While my father in law was in the hospital my blood pressure skyrocketed and I was taken to the hospital. The attending physician in the emergency room dismissed my symptoms immediately and even stated, “the GI tract is not involved in scleroderma,” and was not the reason my colon was removed. I felt demoralized and insulted. I went home without adequate care. I followed up with my scleroderma specialist and he was outraged with what had happened. G I issues are one of the top 3 causes of death in scleroderma patients. He explained that I was in scleroderma renal crisis and should have been admitted. During all of these tragedies, the COVID-19 pandemic was spreading worldwide, and we were unable to get everyday household products. We were literally rationing squares of toilet paper! We were then hit with the news that our family dog of 9 years had breast cancer and would need immediate surgery to remove the cancer. We couldn’t handle another loss in our family, so we moved forward with the procedure.
The tension in our house was unbearable, bills were piling up, and there seemed to be no end in sight. I then became extremely ill with COVID19 symptoms and a collapsed lung. I was admitted to the hospital and told I had a slim chance of surviving. I signed a Do Not Resuscitate (DNR) directive that day. I wasn’t allowed to have any visitors, leaving me to feel as though I was dying alone. I was worrying about my family and was grieving the loss of my father-in-law. Two days into my hospital stay, they ran out of beds. I was sent home and quarantined. I was so sick that I could barely get to the bathroom. I became very depressed, thinking about how my family was going to financially survive after all this mess. Idaho was then hit by several earthquakes, damaging our house and yard, adding to our overall financial hardship.
Our family has had more than its share of illness and injuries, adding on to our physical and emotional damage. Our bills are piling up and creditors are threatening to send us to collections. This has been very difficult for me to put on paper. I am not the type of person who finds it easy to ask for help. I am just not sure how much more we can take. All of this stress and loss has exacerbated my scleroderma and has almost cost me my life. Thankfully we have our faith, and now we have S.H.O.U.T International to help ease some of our burden"