My RP

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I have had strange symptoms before this came to light, but during my last trimester of my pregnancy with my youngest son, I had a severe respiratory infection that never seemed to get better. I have had exercise induced asthma since I was young and they kept thinking it was that. Even after my son was born, I had a lot of trouble breathing, and finally my husband at the time took a job offshore to get me good insurance and I went to an allergist. We thought it was some kind of reaction to the mold in the place we were living. I was referred to a Rheumotologist, and finally made an appointment myself to see an ENT, as I could feel my throat closing up and was being hospitalized about once a week, even had an ICU stay. When I was scoped, we discovered I had severe scarring of my epiglottis and after so many tests, the Rheumotologist finally diagnosed me with Relapsing Polychondritis. I also get the costochondritis and flaring of my joints. My ears are not affected much, and no nose involvement. I have rare complications of the RP being where it's at, and they have even suggested Sarcoidosis, but it's all been negative so far. I've tried many medications, steroids being the main one I've been on (up to 120mg, depending on flares, but have been averaging about 15-40mg the last few years). I'm currently fighting insurance to try Enbrel (I'm on samples to prove it's working), on Methotrexate, Imuran, Prednisone, and many other meds for side effects of the Prednisone. The Prednisone has caused high blood pressure, so I have medications for that. The weight gain from the Prednisone has caused Pseudotumor Cerebri (where I get excess spinal fluid since my body isn't absorbing it and it goes to my optic nerve and head, forcing vision problems and an excruciating migraine and I need spinal taps to control it). I take a medication on and off, but they cause lowered potassium, which I've been hospitalized for, and kidney stones, which have caused 2 blockages. I also now have Avascular Necrosis in both hips, needing them to be replaced, from the steroids. I have severe sleep apnea due to the scar tissue, where I stop breathing over 62 times an hour and my oxygen goes down to the low 80s.

But these are just my symptoms, and I refuse to allow them to completely define my life. I have 4 kids, left an abusive marriage of 13 years, and I work full time. We can allow this disease to define us, or we can define ourselves using this disease as a guiding point to recognize and appreciate every moment that's truly important.