I formed my own blankets around the perimeter of your body so my covers wouldn’t be too heavy on top of you.
I slid a sheet over you and up to your neck and placed a stuffed sloth on your other side, so you’d feel safe, warm, and cocooned in love.
You were in the middle of the bed, stretched out from the tips of your furry Maine Coon paws to the fluffiest end of your tail, with your confused, exhausted face trying to find an acceptable semblance of peace and comfort within the echoey plastic orb of the protective cone around your neck.
Shortly after I was diagnosed with Ankylosing Spondylitis (AS) I decided to buy a pair of heels. I could count on one finger the number of times I’d successfully worn heels in the past: to that dance in college after a knee surgery, using my crutches to help me balance.
I grew up in rural North Carolina and heels did not help me climb trees, catch blue crabs, or sail a boat. I didn’t have a use for them. I didn’t know how to wear something that wasn’t running shoes or soccer cleats. I would only try on heels to make my friends laugh while I stumbled around like Jar Jar Binks.
It seems counter-intuitive that I would purchase a pair of heels right after being diagnosed with a disease that causes extreme joint pain, inflammation, and spinal damage. I should be preserving my body and my joints as much as possible, right?
But when I was diagnosed with AS something clicked inside me, and it wasn’t a desire to follow the Yellow Brick Road back home to Kansas. It was a sudden desire to experience everything life could offer before I couldn’t do it anymore. And that somehow meant learning how to walk in heels even if I was only able to use them for a year, 5 years, or 10 years. Even though it didn’t make any sense.
So I bought heels and kind of learned to walk in them.
When I began receiving infusion treatments for Ankylosing Spondylitis I had no idea how to prepare for my appointments. What do I bring? What do I wear? Do I need a ride?
Now, well over a year of regular infusions later, I often tell people that infusions are my favorite appointments because I actually feel like a patient. All I have to do is show up and be treated; I don’t have to steel myself for a consultation, review medical records ahead of time or expect to receive a new diagnosis or a change in medication. I just show up, get poked with a needle and catch up on emails or Facebook until I fall asleep. Minus the awkward IV pole, it’s the perfect SpA treatment (all you Spondyloarthritis folks got that joke, right?).
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While gift-giving is common for special occasions and during the holiday season, people living with Ankylosing Spondylitis (AS) could use a little extra love year-round. Here’s a long list of items I use almost daily (I really have used all these items recently)! The prices I included are as of the date this was written:
Hot or cold?
1. A heated mattress pad – this is my fall-through-spring bed staple item, and my cats love it too.
2. A moist heat heating pad. My favorite brand is Battle Creek, but be aware that their products get super hot!
3. A simple bean or rice microwave heating pad or sock. You can even make these at home using – you guessed it – a (clean) sock and a couple cups of rice. Please research this before making!