The story of Lynn
I was officially diagnosed with Relapsing Polychondritis in the begining of 2020. I went to the hospital in the end of October 2019 for swelling and extreme pain in my right ear. It was not the first time this has happened, but it was the only time I actually started to get answers about my health.
I had suffered with joint pain, bad immune system, ear pain, and swelling for most of my life. I was put on Lupis watch lists, tested for what seemed like everything under the sun, and was always given the answer “there is something wrong with you, we just don’t know what it is” every time I went to the doctor. I even had what I know now as a flare-up after I got the flu really bad and the doctor dismissed it as “swimmers ear.” Now I know that was not the case. I was becoming very frustrated and I hate to admit it, but I did just stop going to doctors all together. I was tired of getting poked and never getting answers.Â
When I went to the hospital in October 2019 I started to get the same answers and I was frustrated. The pain and swelling wasn’t going away and when it did go away it would flare up a few days later. I was in and out of the hospital from October to December. I finally got a doctor that noticed my symptoms and realized it might be an autoimmune disease, he refered me to a rheumatologist and I was diagnosed with Relapsing Polychondritis in January 2020. This is why my story is called perfect timing. I feel so blessed to be diagnosed and KNOW what is going on with my body before COVID-19 hit. I knew exactly how to stay healthy, what to watch for, and had immediate contact with my rheumatologist (who is now my favorite doctor ever) whenever I needed it. Who knows how I would have handled the pandemic if I didn’t know I was considered high-risk.Â
This is my first year celebrating Rare Disease Day because my diagnosis is still so new. I have so much to learn, but I am so happy to say that this is the first year that I did not get super sick! I haven’t had a bad flare-up since that fateful October night and I am so happy to see that even though I have a rare disease, I am not alone. My advice to anyone who is struggling to get answers about their health: Don’t give up. It may take some time and a lot of pushing to get answers on your part, but it will happen! Ask questions, tell your doctors EVERYTHING even when you think “that doesn’t relate at all to what is happening to me.” Finally, have faith and look towards the future.Â
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