My Initial Thoughts

The iritis specialist I have been seeing has diagnosed me with Ankylosing Spondylitis. It’s kind of scary, to be honest. It’s an autoimmune disease that can cause inflammation pretty much everywhere: hips, back, neck, shoulders, eyes, skin, bowels….it’s a long list. It’s also degenerative, so it will get worse as time goes on. Supposedly, the symptoms are more mild in women. This is not the case for me. My pain is so constant, when the doctors ask me how much pain I’m in, I have to concentrate on my body to see if I’m actually feeling any pain, and my dad has still occasionally told me that I am probably underselling how much pain I actually have. When the pain is really bad, I can’t even get out of bed. Not in a “I’m in so much pain I don’t want to do anything” way, but in a “I can’t even make my body do the necessary movements to actually get out of bed” way.

Thanks to the internet, I’ve found out that I can help control inflammation with a low starch/low sugar diet. I write this with a desk covered in various types of junk food, including Doritos and Chips Ahoy. I’m gonna miss Doritos and Chips Ahoy.

But I want the inflammation to go away. I’m so damned tired of being in pain all the fucking time. It’s old. Even with 800 mg of ibuprofen 3x per day, I’m still in constant pain. That’s not how I want to live.

I think one of the most “fun” symptoms is the pain in my leg that makes my leg fail at walking. Have you ever had that feeling when you step off a curb you didn’t know was there? My legs do that to me, on their own, while walking across a flat surface. Sometimes, it’s so bad I almost fall. It has happened so often, I have a name for it: glitching (this came from me telling my boyfriend that it feels the way a Skyrim glitch looks).

And this has been happening to me almost constantly for 2 years. My doctor initially diagnosed me with sciatica and sent me to physical therapy. She didn’t look into why I might be experiencing sciatica, or why my back would be showing signs of arthritis at 25/26 years old. She told me to lose weight. Yes, being overweight and having an unhealthy diet can make symptoms and inflammation worse. I would think, however, that having a patient show arthritis at a young age would make you consider whether there might be something else at play. I’m not seeing that doctor anymore.


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