Sick Girl Part IV
Continued...
By 2011, I didn’t think I would ever feel better. I got worst and worst. I was happy enough when I found out what I had but to hear it didn’t have a cure was crushing. A large tumor had begun to form between my pubic area and my stomach. It protruded out very big. I wanted to get it cut off but my doctor wanted to try some experimental treatments on me. When I got new outbreaks, she would stick me with needles directly into the lumps. I would get maybe 3 to 4 shots in each lump, about 15 sticks with that needle. I started the treatment that summer since I would be the worst when it was hot outside. HS affects your sweat glands. For this treatment, I had to inject myself with a pre-filled needle in the hip or stomach three times a week, then later twice a week. These shots cost about $5000 a month, but my cushy little federal job covered it. The shots actually worked. I had no new outbreaks and the ones I had didn’t hurt as much. Downside was the tumor kept growing bigger and bigger.
By the beginning of 2012, the tumor was the most crippling thing about my disorder. I would get infections at the site that were hard to get rid of. I went to a new doctor and he told me I needed surgery as soon as possible. It was so bad that he tested me for several cancers and other disorders. I tested positive for rheumatoid arthritis and borderline anemia which is common for people with my disorder. I was barely working and my grades were suffering in college. I wasn’t optimistic and once again, my doctor suggested I apply for disability. I applied in March. The first surgeon that my doctor referred me to said that he didn’t think he was qualified to complete my surgery. He said he would have to get a plastic surgeon to assist him and I would have to get skin grafts which would equal out to about 4 surgeries. He said I could be hospitalized for about a year and a half. I was terrified. I got depressed. I cried all the time. I could barely leave my house.
I went to another surgeon. He said he could complete the surgery within one surgery but I would have to remain hospitalized for about 6 months while I healed. He sent me to the infectious disease doctor to see if he could get rid of the infect around the tumor before going into surgery. I had to go every other week and get blood drawn and tested. I was on very strong antibiotics. My body reacted horribly and I ended up hospitalized during my college finals. I was only able to pass one of my classes but only because my teacher gave me extra time to make up my work. The other I failed. I was very upset about that because my GPA was pretty good. By this time, I wasn’t able to work at all. I was pretty much bound to my home. I found out that my contract would not be renewed in August and the insurance I had through my job denied coverage for my surgery. I was so lost. I was dating this guy and I knew it was a lot for him to handle. July was the last month of my contract. I didn’t know how I was going to be able to support myself anymore. I was terrified. I tried to find jobs that I thought that I could do but there were not many. I was so lost.
