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| Hidradenitis Suppurativa - Thoughts and Theories |
| by Jason Cameron |
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My Story There has been some confusion as to who, exactly, I am. In the HS forums I have used a few different names and email addresses. The internet is such a wonderful pain in the butt. You always have to sign up for things and give email addresses and such, so over time, I have accumulated a whole bunch of interconnected web-related services and email addresses, not to mention user names and passwords. What a nightmare. Anyway, here are all the names I go by on the internet: Simon Palmer - this is just an alias I use when I don't want to give my real name. Soupcanj2001 or just Soupcanj - this is from my yahoo email account. I get so much junk mail in there that I've practically abandoned it, but I do still get some emails I want in there, so I still check it from time to time. I just don't have time to unsubscribe to all the junk mail I get. jcameron@musician.org - this is a pretty good free email service from www.mail.com . I got this address to use professionally in my music career. Now I just need to get a professional music career! tokenlizard@mailworks.org - I got this free email address when I forgot my username and password somewhere, and couldn't sign-up again using my old email address. The quickest thing to do was just get another free email acount somewhere and sign-up using the new email address. So frustrating. So I still have this address, but I don't use it for much. I am also thecandidaman@lycos.com. I got that address the other day to try to get all of my HS/Candida corespondence into one place, but I was a little late. Now some people have the jcameron@musician.org address, and my subscription to the yahoo Candida forum sends posts there. Oh well. Besides, the form handler service I use only sends the input from forms on my websites to that address. But my real name is Jason Frederick Cameron. I was born in New Jersey, and now live in California. And here's the most recent photo of me I could find:  HS History: I will start from the first time I noticed HS (of course I didn't know it was HS at the time). I was a truck driver for a furniture company when I was 20. I noticed a rather large "zit" on my left butt cheek that hurt pretty bad. It didn't help that I sat down driving a truck all day. The lump went away after a while without ever draining. Sometime later, I had two lumps on my butt that hurt. The swelling went down, but they didn't completely go away. I had a similar lump under my arm when I was 21. It hurt pretty bad, but the swelling went down on it's own after a while. It seemed to go away completely. When I was 22 I was playing bass guitar in a rock band. The lumps on my butt swelled and subsided for a while. I was sure it was cancer and that I was going to die. Then it started draining. I would use medium sized adhesive pads (from Band-aid) to cover them and soak up the drainage. One night while I was drunk, I went to the hospital emergency room because the swelling was very bad. The doctor told me I had a staph infection, prescribed an antibiotic and sent me home. I took the antibiotics. They seemed to help for a while, but the lumps came back and the draining got worse. I went to a dermatologist for another skin problem, and while I was there I showed him the lumps and draining on my butt. He said I had a bad staph infection and that it would require surgery to correct it. I was not up for surgery. When I was 23 the lumps had spread to a larger area of my left butt cheek and I had to start using larger adhesive pads. I was still playing in the band, and we were touring 5 days a week, so I spent a lot of time sitting in our van as we drove all over the country. This was very painful, especially when it was my turn to drive. I went to another doctor who prescribed the same antibiotic I had received before and suggested soaking in the tub twice a day. I was in a band on the road, so soaking in the tub really wasn't an option. The antibiotics didn't really help. By the time I was 24, the pain was getting really bad. I was having really bad pains in my leg, also. I quit the band and traveled the country for a while. While in Boulder, Colorado, I visited a clinic. The doctor there said I had a staph infection and gave me antibiotics. They didn't help at all. The doctor also said that the pain in my leg was from a swollen lymph gland that was overworked because it was fighting the staph infection. I returned to my mother's house shortly before I turned 25. My mother died soon after, from diabetic complications. She had been sick for a long time. My HS got steadily worse. I had another skin problem and went to a dermatologist for that, and I showed him the draining lumps and sinus tracts on my butt. He said I had a staph infection and told me to go to the hospital and get some surgery. I still wasn't up for any surgery. So I just lived with HS. I had a massive lump under my arm. It grew almost as big as a baseball. It finally drained and went away. I missed two days of work. When I was 28 I left to travel the country again. I ended-up in New Mexico for a few years. My HS was much better while I was there. I had become a little bit of a religious person then, and I was attributing my remission to God for a while. But the swelling returned, along with the draining. Other problems I'd had for a while got worse. It was my last year in New Mexico that I really started having bad problems with my stomach and bowels. That's when I started to see blood in my stool. Many nights I went to bed wondering if I would wake-up the next day. When I was 32 I moved to California. My HS got worse while I was working a night security job. I sat in a golf cart and drove around all night. The nice thing was that I could use the bathroom and clean up my drainage any time I needed to, but the smell had gotten much worse. Two lumps had formed in the crease of my leg, right behind my testicles. Then they began to drain. I had nightmares about going to a doctor and being told I would have to have my testicles removed. Since then, I moved from the resort/campground/marina where I had lived and worked into town and took a job at the Home Depot. That was a physically demanding job requiring close interactions with customers. My HS hurt a lot, and I had to constantly change the dressings on my HS because of the smell. It was around this time that I learned that my problem had a name: Hidradenitis Suppurativa. The Home Depot did not give me enough hours over the holiday months and I couldn't find a second job, so I couldn't afford insurance on my van. I had to ride my bike about 8 miles each way to get to work and back, and that did not help the pain and draining. I finally quit my job. I qualified for unemployment, and though it doesn't pay much, I can live on it for now. I was considering going on disability, but I really don't want to do that. That's when I became really active in HS research and came up with my theory and treatment plan. Despite my recent incident (see my diary entries for 8/4 and 8/5) I think I am really getting much, much better. ~Jason Cameron |