I was 19 when I started to not feel well. I noticed my left rib was swollen and it hurt extremely bad and was so sensitive to the the touch. My dr took some blood work and said my ANA level was high and so I was sent to the U of U hospital. They diagnosed me with Lupus and started treatment. Over time, I kept getting worse. I wasn’t responding to the medication. They tested my blood again, ANA levels went down. I no longer had lupus but I had some Autoimmune disease. They just didn’t know what. They tried all sorts of medication. Steroids, steroid therapy and learned that steroids made it extremely worse. So they did a biopsy of my rib. All they could find was a little bit of bone growth but nothing that could tell them anything significant. According to them. That’s when Dr. FRECH requested me as her patient. She researched everything to try and and help me. Mean while, person meds was all they could treat me for. In between other failed medication. I even had a liver biopsy, that just told them my pain meds were causing fat around the liver. I would go in flares. So I did have weeks of wellness and a life. I had failed jobs because the bosses couldn’t handle my illness. Until one job could they were awesome. College was always hard. I was always dropping out because I wasn’t well enough. Then my kidneys started hurting, found out I had Polycystic Kidney disease. Nothing to do there except watch my salt intake. After years of no relief, finally Dr.Frech put a name to my illness. SAPHO syndrome. She said it was the best fit for my symptoms but I didn’t have all the letters of SAPHO. Also, I Still wasn’t responding to treatment. But it was the best fit. So on the chart it went. It was that or I have a new disease. So I dealt with it. Just taking pain meds, trying to work, trying school again. School was going great this time. I was a history major. I had a great internship working on documentaries, and the world was opening up for me in the history dept. Work was going amazing. Then I stared to crash. I needed so much iron infusions, I had to drop out of school, and I was working 1 hour a day, then nothing. A permanent flare struck. Voice gone.
Forced to live with my parents. My life completely changed. Finally,a 7th rib removal was approved. It was the dream to fix it all. They found staph hiding in the bone. My voice came back. I was in order health for 2 weeks. Then the pain, all my symptoms came crashing back. Only this time it disabled me. I’m now walking with 2 canes. Living with my parents. I was granted disability and I’m so grateful. Everyday I live in pain. Migraines all the time. I’m on a new a medication that has helped some, but not enough to give my life back. I’m living a new life. And each day I learn something new. Something humbling. I know there’s hope to be well. There’s always hope. And I believe there is purpose to everything. No matter how painful. It’s what you learn from it.