But I’m Not Hungry!

My sister has not had another seizure. She has an appointment to do an MRI and an EEG on June 11th at Children’s Hospital. Hopefully, if there’s anything wrong to find, those in-depth tests pick it up. She’s been sleeping a lot lately, which she is worried about, but I am convinced it’s a good thing. My finger is no longer as numb as it was… or I’m getting used to this strange feeling. The infection seems to be gone, or mostly so, and I’m hopeful that I’ll be fine.

My left shoulder is feeling a little screwed up at the moment because I fell asleep in a chair this morning for a nice little cat nap (forget the fact that I had a nightmare). My knees have been doing a lot better lately, which is both nice and odd.
The biggest problem that I am having right now is the loss of appetite. When I was about seven, I began to throw away a lot of my food. I just simply wasn’t hungry. My mom maintains that she is to blame, because she had apparently said something about me being chubby, but I have no recollection of that comment at all. I just remember not being hungry. I lost a lot of weight and got down to under 50 pounds. Occasionally, I will experience this same problem. I know that I have to make myself eat at least three times a day, but there are days where it just isn’t high on my priority list. Usually, this only lasts for a few days, but it has been known to go on for weeks on occasion as well.
This past weekend, my boyfriend and I went up to Appleton for the D-3 World Series in College Baseball. I didn’t eat a lot, not because I didn’t want my boyfriend to spend a lot of money (which is also true), but because I simply wasn’t hungry. On Sunday, I ate almost a whole Subway sammich and a cookie. This started for me on Thursday night and I have yet to really come out of it. At least there are enough delicious foods in the fridge to hopefully keep me eating three times a day.

Pitcher’s Shoulder

Every so often, I get what I like to call pitcher’s shoulder. Basically, it feels as though my shoulder is detaching from torso. This feeling generally starts in the lower neck – sometimes as a crick, other times on it’s own – and moves down to the top of my shoulder. This movement also causes the top of my arm to ache terribly and can make it near impossible to move, let alone do anything else. Occasionally the pain will move down my arm until it hits my fingers.

When I was younger and didn’t so much understand my body, I used to try and stretch out my shoulder to the point that I would pull muscles in my arm. Needless to say, I’ve grown smarter since then and have since stopped using that method.
It is hard, though, to know how to take care of this kind of injury. There is a reason, though, why I like to call it pitcher’s shoulder (apparently I’m not alone in this). The only real thing that helps my shoulder is to play catch. Unfortunately, I don’t always have the ability to play catch, so here are some alternatives that may help you out if you also experience pitcher’s shoulder:
  • Icy Hot products
  • Heat therapy patches
  • Pro-Ice wrap (expensive!)
  • Rest (apparently that’s supposed to help, but never does for me)
  • Working out. If you strengthen the muscles in your shoulder, it shouldn’t happen as often. This is a nice concept in theory, but not entirely accurate for those of us with Still’s.

Since I can’t go play catch by myself at the moment, I’m using the Wal-Greens brand of hot patches. It’s not helping a ton, but it feels a little nicer at least. Pitching really is the best way to work out this pain.

Edit: If you’re coming across this sometime after 2019, I have hypermobility and the pain I’ve described here is from a subluxation or dislocation.

Birthday Fun

I am entirely too exhausted. Why? We’ll start at the beginning.

I work in retail and I pretty much work everyday, one way or another. Last week, I worked everyday except Wednesday. It’s not super demanding on a normal person really. However, if you have JRA and you’re standing for six to seven hours everyday after walking around all morning, it get a little tiring. I go to classes in the morning and then work late into the night, so it makes it difficult to get any rest.

Last Sunday was my 21st birthday, so needless to say my friends wanted to take me out. Saturday at midnight (Sunday morning, whatever) we went out to La Cage, the gay bar/club in Milwaukee. It was amazing and that’s totally my new spot. I feel a lot safer there than other places because everyone there is so caring and nice and I really don’t have to worry about – well, I digress…

I danced for about two and a half hours non-stop before they started closing down the club. When I was in high school, dancing was my thing. I could never take dance because of my JRA, but I’d go to every dance and just keep going for hours. My friends and I choreographed dance routines to songs and it was so much fun. Obviously, I’d pay for it with a physical “hangover” the next few days. Needless to say, after not dancing for so long, the pain was far worse this time. I was tired enough the next day, but it’s really the second day after that the pain sets in. I did not want to move at all. A week later, I’m still feeling it… kinda.

I went to a Brewers game with my boyfriend Tuesday night and our tickets were all the way at the top of the stadium. It made for a great view, but there were so many stairs! I had so much fun and it was a great game. I wouldn’t have traded it for anything though. 🙂

Along with all of this, the elevator in my dorm building has been making some… odd noises. I’ve been trying not to take it, because that’s just creepy. This means more stairs time, but I live on the fifth floor. Add into that the fact that I go to and from classes and work and social gatherings probably half a dozen times a day or so is what makes it an issue.

I took the first of four finals today. It’s pretty nice to be almost done with this year of schooling, but that subtracts sleep (and sanity) from the equation. One of the most important factors that many people fail to address when they discuss Still’s Disease is how much the physical limitations affect the mental state of the victim (that was the best word I could come up with, so forgive me).

As a younger child, I think that it was a little easier to accept. Doing ‘x’ hurts, so I’ll just sit here and do ‘y.’ Obviously, it sucks that I couldn’t go do certain things with the other kids, but younger kids are more accepting of why people can’t do certain things. As Ive grown up, I’ve seen that other people are more closed minded than I would’ve ever imagined. When I can’t participate in certain activities, I find that people don’t care to understand why. Instead they blame it on this or that, failing to listen to the real reasoning. Between that and my stubborn nature (Taurus!), I don’t feel as though I can just sit here and do the easy things. I feel like life is a challenge – one that I intend to participate in as fully as possible. If that means that I get a little extra tired or sleep through classes some days (oops), then so be it. I’d rather be as alive as I can than sit here wondering what it’s like to get a dance routine going in a club or go hiking on the coast.

This post is a little disorganized, so you’ll have to forgive me. The amount of sleep that I’ve gotten as of late is not a lot.