The year began with my son Zachary becoming very ill. On January 4th, he went home sick and it became readily apparent that it wasn't just the stomach flu. He wasn't improving. Before this debacle, he rarely got sick and recovered quickly when he did. That was not the case with this mystery illness. The abdominal pain was excruciating for him and for us as observers. Going to the hospital didn't help. In fact, it worsened his condition. He developed a rash on his legs that told his pediatrician what it was. Henoch-Schonlein purpura (HSP), A rare autoimmune disorder that we had never heard of was draining his body of everything we take for granted. His joints hurt so much that he couldn't walk. He had to be carried to the ultrasound room. He couldn't eat solid food, so his only nourishment was delivered through the veins. We felt helpless and heartbroken about not being able to do a thing to alleviate his agony. The picture below is the rash that represented broken blood vessels. This condition affects children between the ages of 2 and 11. You can read more about it here.
The hardest part of the diagnosis was that the disease is so rare that very few know how to treat it. The rheumatologist at Texas Children's Hospital provided the most helpful information. He had at least seen enough of it to know that certain foods were forbidden for the time being. Apparently, pizza is the worst possible thing one with this illness can eat. It also happens to be Zachary's all-time favorite food. The doctor instructed us to keep him on bland foods for six weeks and we adhered to that. Plain potatoes, rice, and boiled chicken with Jell-O for dessert. To this day, he shudders at the sight of Jell-O. Anyway, his condition improved and after six weeks, we thought it was alright to allow him pizza. That was a huge mistake that sent us back to the hospital. Ultimately, we overcame the illness by going gluten-free diet during his recovery. Tests proved he was not allergic to anything, but the restricted diet really helped with his recovery.
After a long search, I'd secured a position that I thought was my dream job. I'd been hired as a legal writer in December 2012. It was very challenging, but I enjoyed it. It was intellectually stimulating and lifted me out of the extreme depression I'd been experiencing. When Zachary got sick, I couldn't function and my work suffered as a result. Sleep was impossible. I couldn't take off much because I didn't have the sick leave. Any time I did take was unpaid, which wasn't feasible for me. Each day, I went to work in a daze as my immediate family members took care of my son. It was unbearable. I should have resigned, but I trudged ahead because I thought that I belonged there. Unfortunately, I was let go just inside of 90 days on the job. I know this sounds depressing, but things do get better. I will share more in my next blog post, so stay tuned for part II. There is an upside to all of this despair and heartbreak.
