Chronic Illness Book Club

It started out with a discussion. My friend and I got together to discuss what we had hated about Panic, and what we had liked about it. It turns out we had similar thoughts about what we hated- and they were thoughts our “healthy” friends just didn’t get. 

The discussion became a thought. What if there were a book club for chronically ill and disabled people? What if it were laid back, and what if it were online? I looked around a bit, but I couldn’t find one that met all my criteria- and I admit, I had quite a few. 

The thought became a question. I tweeted and tumbled to ask who would be interested in a chronic illness book club. The response was overwhelming, and Spoonie Reads was born. Even with the responses I’d had, I didn’t expect a turn out like I’ve gotten so far. With over fifty followers on tumblr and over seventy members on goodreads, and a budding hashtag (#spooniereads), it looks like I’ve struck a nerve in the community. 

I’m so excited to get started with this and connect with more chronically ill bookworms!

Tuesday Things:

What I’m Reading: Nothing, but I just finished Cress. I didn’t think I would like Cinder, Scarlet, and Cress, but I guess you shouldn’t always judge books by their goodreads reviews.

What I’m Playing: Kingdom Hearts Remix 1.5. I want to play the original, but, alas, I have no PS2.

What I’m Watching: Rewatching Avatar: The Last Airbender with the fiance, who has never seen it.

What I’m Loving: Currently, Powerade! I’ve caught a nasty virus and spread it to my entire family. We’re all hugging our Powerade bottles close.

 

You might be chronically ill if:

Just a fun post today, inspired by my pre-syncope episode while putting on the compression stockings I bought to help prevent syncope. It’s moments like that when I truly know I am chronically ill. So, you might be chronically ill if:

• when putting on your compression stockings is enough of a workout to send you back to bed.
• when eight hours of sleep no longer seems like a reasonable, restful amount
• when you know more about medicine than some of your doctors
• you wear sweaters in the summer and tank tops in the winter thanks to poor temperature regulation
• you know what “spoonie” and “dish” mean.
• you are always the youngest person in the waiting room
• yes, you have tried yoga.
• you’ve planned outfits just to match the mobility devices you need that day
• your purse could pass as a small pharmacy

What are some of your “chronically ill moments” like this? 

At least it’s not prednisone!

So, I’m back on Florinef. Florinef is a type of steroid. Steroids are known to make people hungry, cranky, and sometimes cry a lot. We’ve all got that down. You’ve all heard horror stories about binging while on prednisone.

Well, when I take prednisone, I go into full-on psychosis. Hallucinations, night terrors, crying, screaming, and then maybe eating a whole pan full of gluten free brownies. It’s hell. So why, oh why, do my doctors keep trying different steroids, hoping that I’ll react differently to them?

It’s true- Florinef doesn’t pull the reactions from me in quite the same way as prednisone, but it’s still no fun for me or the people around me. I get night terrors, crying jags, and intense cravings for burritos. All this for a minimally helpful treatment. What’s up with that?

I would never be that person who disses other people for taking medication. In fact, I’m all about medication when it helps. The problem is doctors/people that aren’t me deciding that since something worked really well for someone else, it’s going to be the end-all-cure-all for me. 

Tilt Table and Rare Disease Day

I celebrated Rare Disease Day a bit early. Yesterday, in fact. How did I celebrate a day dedicated to raising awareness for rare diseases? By getting a weird medical procedure done, of course!

Yep, yesterday was my tilt table test. Although I had been diagnosed with dysautonomia before the tilt, this test was supposed to let me know if I needed a pacemaker or not. So I stressed, and I planned, and then… I didn’t need a pacemaker. Well, that’s not exactly right. I’m in a weird class of NCS/POTS where I could probably benefit from a pacemaker, but not enough to drop thousands of dollars on surgery. So it looks like I’m right back where I started from- being a medical zebra and utterly untreatable. Oh, and eating tons of salt.

How did you spend rare disease day?