Tuesday, May 26, 2009

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 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.

Monday, May 18, 2009


My sister and I went to see Star Trek Monday, but she was feeling really odd and nauseous. As we walked around Barnes and Noble searching for a place to sit down, her whole body went limp and she stopped responding to my voice. I eased her down to the ground and held her head in my lap as I watched my sweet baby sister helplessly seize and shake. It took me a moment to realize what was happening, but as soon as I did, I had help.

There was a woman behind me with her cell phone already out who was able to call 911 within seconds of when Kelsey's seizure started. Even more luckily perhaps, a gentleman who works at the store is married to a woman with epilepsy and was able to help me handle the situation. Unfortunately for myself, he arrived just a short time after I put my finger in Kelsey's mouth to stop her from biting her tongue off. I do not really regret that decision, but I'm thinking it's not so good that I still have no feeling in the tip section of that finger.

The seizure lasted between a minute and a half to two minutes. It was the longest-shortest time in my entire life. My sister is like my daughter, is my best friend, and one of the people that makes my world a better place. Sure, we fight a lot, but I think that she and I both know how very much the other loves her. The ways in which her body contorted and twisted, trembled and shook - there are no words which can describe the terrible mark those sights have left on me.

As Kelsey started coming out of her Grand Mal seizure, I was sure she was dying. Her clenched jaw began to ease up, but her breathing was still so labored, almost non-existent; her eyes were still in the back of her head and her face was still the palest I've ever seen it. The man whose wife had epilepsy was talking me through the situation, telling me that she would be alright, but there was a big part of me that couldn't believe this Good Samaritan.

Nothing... nothing... finally a breath. I laid her down on the ground in the open area which had now become our ground zero. She kept crawling around, squirming and grunting. I just kept talking to her, saying her name, and telling her that everything was going to be alright... even though I wasn't sure it would be. I had to believe, if only just for her. It was a few moments later that the paramedics showed up. 

Altogether, about five minutes had elapsed from the time my sister passed out. I was very impressed with the quick response from the EMTs. The both of them were very helpful and I was so grateful to have these men who knew how to handle both the situation and someone who is younger and very confused. The younger of the paramedics was very good with Kelsey throughout our time with them.

Once the paramedics had gotten some vitals from my sister and vital information from myself, we got Kelsey onto the stretcher and headed for the elevator. Kelsey still doesn't remember being fully with it during this time period, but she was so scared. She kept talking about how she wanted our mom, that I needed to be right with her, and that she didn't want to go to the ambulance. I had tried to maintain my cool throughout the situation, but seeing her so confused and so very out of it made my heart drop.

Once we got down to the ambulance, the paramedics wanted me to sit in the front seat, where Kelsey couldn't see me. I began to call my parents and let them know what had happened now that I could count on paramedics to care for my sister. My mom sounded brave on the phone, but I could feel her heart sink; the situation was the same with my step dad. The paramedics came over and let me know that I could come sit right next to Kelsey instead, helping the two of us feel a whole lot better.

We sat in the ambulance for what felt like ten minutes before actually leaving for the Children's Hospital. En route to the hospital, my sister finally came to completely. By this point, we had talked five or six times about what had happened, but this last time there was a different look in her eyes. She understood what I had said and started worrying about our financial situation instead of her own health. She also stared making more jokes, so I knew that she had come back. She didn't really recall any of the events of the day or even the night before.

We finally got to the emergency room entrance of the hospital after almost losing Kelsey to traffic during the ride. Her stretcher wasn't secured all the way and she started to drift towards the doors. The paramedic in the back didn't notice right away, but I did. After everything we'd already been through that day, I had to re-lock her stretcher into place too. I'm just happy she didn't fly out onto the busy road behind us.

We were shown to Kelsey's room and she was able - for the first time - to move on her own. The attending nurse got some more vitals and then left us to get Kelsey into her hospital gown. She was still amazingly dizzy and it was near impossible for her to stand on her own for longer than a second. We got her changed into her gown. It was the first time we'd been alone since we'd left the car before ten thirty. Understandably, after the day's events, we hugged so tightly and began to cry. It was about this time that my parents showed up, turning the crying duo into a foursome.

We were in the hospital for a few hours. Between phone calls and text messages, most of anyone important knew about the situation relatively quickly. The nurses got Kelsey on a saline IV, then ran blood tests on electrolytes, an EKG, and a CT scan. After all those tests, there wasn't any reason found for Kelsey's seizure. She only has a 30% chance of having another seizure again in her whole life, but that won't prevent me from watching her like a hawk when I can be around.

Sunday, May 17, 2009

I Kneed Less Pain

There is just no way to feel alright with this pain.

My patellas feel like little bitty balloons smashed between a femur and a tibia. But why? Let's take a look at this site:
Because of the loss of the gliding surfaces of the bone, people with arthritis may feel as though their knee is stiff and their motion is limited. Sometimes people actually feel a catching or clicking within the knee. Generally, loading the knee joint with activities such as walking long distances, standing for long periods of time, or climbing stairs makes arthritis pain worse. When the arthritis has gotten to be severe, the pain may occur even when sitting or lying down. The pain is usually felt in the inside part of the knee, but also may be felt in the front or back of the knee. As the cartilage is worn away preferentially on one side of the knee joint, people may find their knee will become more knock-kneed or bow-legged. 

Someone who has arthritis of the knee may experience pain, swelling, and a decrease in knee motion. A common symptom is morning stiffness that lessens as the person moves around. Sometimes the joint locks or clicks when the knee is bent and straightened, but these signs may occur in other knee disorders as well. The doctor may confirm the diagnosis by performing a physical examination and examining x rays, which typically show a loss of joint space. Blood tests may be helpful for diagnosing rheumatoid arthritis, but other tests may be needed too. Analyzing fluid from the knee joint may be helpful in diagnosing some kinds of arthritis. The doctor may use arthroscopy to directly see damage to cartilage, tendons, and ligaments and to confirm a diagnosis, but arthroscopy is usually done only if a repair procedure is to be performed. 
It definitely does feel as though the cartilage in my knees is almost non-existent. My normal approach is to try and rest my knees. Seeing as I'm slowly starting to nod off here, that should be no problem. However, the best thing I could do is to take an anti-inflammatory and do nice low-impact activities with my knees... Mayhaps now that I live at home (on a lake), that won't be as much of a problem for the summer.

Tuesday, May 12, 2009

I Feel Odd Today

My body really isn't in all that much pain. My knees are sucky, as usual, but in reality I've got it good right now. My sister, on the other hand, doesn't so much.

One of the things that many people don't remember is that teeth are bones. Many people with Still's end up having poor dental health. Sadly, if someone doesn't have dental insurance, the quality of their dental health goes down even further.

My sister is on day five of having an ear/sinus infection. Normally, this wouldn't be so bad. However, since she has poor teeth, this has led to some... interesting problems. For the past five days, she's been in excruciating pain. Not fun.

There's really not a lot one can do, aside from taking care of one's mouth and visiting the dentist regularly. Unfortunately, my family fails to do either. *le sigh*

Friday, May 8, 2009

Sleeping on a Couch

This does not help the shoulder problems at all. Then again, moving crap didn't either. At least now it's manageable pain.

For those of you who may not have Still's, the shoulder problems that I have at least leave me feeling as though I have a perpetual dead arm. If you've ever had one, you can appreciate how difficult it becomes to do everyday things like open doors, move things around, or even stretch. 

There is really no comfortable position that I can get in to solve this problem. I am trying to refrain from taking pain medication, because I really just don't like how often I've had to take it in the past and how it makes me feel. However, because of the swelling and the fact that I have to work the next three nights, I might just have to take something...

Thursday, May 7, 2009

Shoulder Update

Alright, so aside from my elbow being a little shaky from carrying down a whole room full of stuff yesterday, my pitching arm is just about back to normal. The only real effect left from all that jazz is a little bit of muscle soreness, so that's pretty good. My other shoulder, though, is not so happy. It's my non-dominant arm and doing more with it was probably not the best of ideas, but I didn't have much of a choice, so oh well.

I might go pitch again today, but I'll probably let it wait until sometime next week instead. I could probably do it with relative ease today, but something tells me it may not be the best thing since I have to unpack my car again. We will see.

After a week here of very little sleep, I'm just thinking about taking a nap until checkout time on this poor naked mattress.

Tuesday, May 5, 2009


Alright, so if you've ever watched baseball closely, you know that some pitchers swing their legs fun ways as a part of their release. Girls trying to be silly and have fun are no different.

As a small child, I busted my knee in a grocery store (Note to parents: Do not let your kids stand on the edge of the cart). We got a free bag of ice out of the deal, but I'm pretty sure I'd rather have kept my knee intact. I've done other random things to both knees, making them possibly the worst joints in my body... although, I think my shoulder is catching up. 

In any case, my knees were already bugging me as of late, but the whole pitching for way too long thing yesterday? Yeah, that didn't help so much. I do the leg swing around thing, so the knee on my stationary left leg is very unhappy. Thankfully, all I have to do is start moving crap out of my dorm room... 

*eye roll*

Honestly, my whole body is starting to feel repercussions for my love of baseball today. But, hey, the second day is always the worst.

Pitcher's Shoulder, Part Two


I went and did an hour and a half of pitching against a wall yesterday. I shouldn't have gone so long, but it was good to get my arm moving and also work on my ability to catch ground balls. I know now first-hand why pitchers have to wear jackets when they're not pitching and why there aren't a lot of complete games pitched.

Today's treatment: Cold compress, cold bath, and lots of rest (if possible, since I have to move).

Monday, May 4, 2009

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:
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.

Friday, May 1, 2009

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.