Thursday, July 14, 2011

A message from Jordan

"I have an invisible disease but my pain is really, real."

School starts in a little over a month and I'll go in and talk to her class like I've done before. But how do you get a bunch of 4th graders to really understand? Jordan misses a lot of school. Between her infusions, PT, eye exams and being sick her classmates think they can catch what she has. They don't believe her when she says she hurts. So, what to do??

Jordan's next infusion in less then 2 weeks. I'm bringing the camera and recording bits and pieces again. I'm going to put together another video  of her day at the clinic sans the Linkin Park soundtrack ; )  I don't want her to go through another year of being called a liar or kids being afraid to play with her because they might catch arthritis.

Of course I'll let the staff see the video before I go in but I think it's important to show these kids that yes, she's different but she's not going to hurt them. Her missed days aren't fun. In fact, they suck.


Kristie said...

I sure hope they allow you to take the video in to the class! <3

Katie said...

I just wanted to let you know that if you ever wanted another person to go with and help her answer questions I would be happy to go too. I used to speak with kids at schools through a peer counseling program. I usually have Wednesdays off but if you let me know within 2 weeks of the date I could get any day off.

Victoria said...

I know how hard it is I live with it every day sense I was 10 I'm now 16 and I still haven't found a med that works. I had 2 shots a week for years and 2 or 3 IV meds and so many pills I lost count....its so hard trying to make people understand that your not lying and that your pain is real, even though you can't always see it. I don't even think some of my family gets it all the time, but they don't take meds every morning and night or wake up with pain or have an IV in their arm every month....your not alone girl and I think only special people get things like this cuz it is for some purpose...the pain isn't all for nothing.

Waynette Porter said...

I hope things have worked out at school with kids not thinking they can catch Jordan's JA. I can't remember dealing with that in school, but having people say I was lying happened a lot. Especially if say my left leg hurt one day, and then the next day my right leg hurt because I had babied my left one the day before and pushed the right one too far. Even on days when it seemed like hourly I added a new place to the others that were hurting, stiff, or stuck in a position that I couldn't move them because of the pain.
I know in middle school some of the kids were pretty cruel. I would get bumped into so hard that I dropped the things I was carrying. Then some of the kids laughed as I struggled to pick things up. I also got a lot of rude comments because I had an elevator key and got to leave class early. The other kids thought it was not fair. I may have told some of them that I'd trade them my elevator key and pain for their healthy body and lack of pain. I kinda developed a smart-aleck attitude with the other kids. I had my best friend outside of my school which was why I ended up not caring what the other kids in school thought of me and said about me.
In high school, most of the kids were decent. They still said I was lucky to get out of classes early or not be counted tardy when I came in late. I still responded with the offer of a trade. I didn't have any pushing or shoving to deal with in high school. My worst problem in high school was my freshman year when the guy whose locker was next to mine caused me problems. We had these split lockers where it was a normal narrow and long locker. But above the locker, spanning the width of 2 lockers, was a smaller section that opened when the lower locker was opened. They were also stacked 2 high. I didn't use mine because I had the upper one and I was too short to reach it. The bottom of the door on the lower part was right at temple level for me. The kid whose locker was next to mine decided it was hilarious to keep opening that locker and hitting me in the head. If I wasn't having a good day, or especially if I was in a "fog", I didn't pay that much attention to him. So I got hit in the head more than I care to remember. Thankfully the next year, somehow we ended up not having lockers right next to each other. Amazing given that we had the same last name!
I heard a lot of rude comments about how I faked pain to get out of gym class. Yeah as if I wanted to do the middle school boys' basketball team's laundry. (I did not find out until recently that if a child cannot participate in phys ed, they cannot be made to do certain things (like laundry) to earn their grade in phys ed. I wish I'd known that then.
I know Jordan is a very brave young lady. She is mature for her age. I know it's rough on her to hear the comments from the other kids. But, sometimes you just have to ignore the others around you and keep on persevering. I am sure she will come out on top and will learn that kids who want to be mean are just petty, possibly spoiled rotten brats. They haven't learned that just because someone can't see a person's pain, it doesn't mean it's not there. It just means they can't see it because they don't know the signs to look for.
I'd like to say it gets better as an adult. And for the most part it is true. But unfortunately, it's not 100% true. Many people who are adults act the same way those kids do. They think someone who has an invisible disease is lying for some sort of personal gain. I have yet to figure out what good thing I gain because of the pain, swelling, stiffness and everything else I put up with. There is nothing that can make up for that
Keep up the fight!

Jamie said...

I understand what it is like to deal with the pain of autoimmune arthritis. I was still in college when I had two bouts of uveitis and aching and swollen joints in the period of three years. I was diagnosed with ankylosing spondylitis the semester before I graduated with my bachelor's degree. I cannot tell you how many days I felt tired and I felt like I was coming down with the flu. Right before I was formally diagnosed, I ended up in the ER with a badly swollen knee, the doctors thought I had a blood clot in my leg. X rays revealed that I just had too much fluid on my knee and I had it drained. For the most part, most people were concerned, because I was limping and had to wear an ace bandage. One of my professors decided to walk slowly in front of me when I was trying to leave the classroom (the professor knew about my knee because I emailed him about the possibility of missing class, but I was able to have the fluid drained from my knee and I had an assignment due that day). I will never forget how this one guy was nice to me. The elevator was not working one day and I needed to go downstairs. This guy carried my backpack for me while I had to limp down the stairs. I was very grateful. I was glad and sad at the same time on the day I was diagnosed with ankylosing spondylitis. I was glad to find out why I was not feeling well all the time, but I was sad to learn that my life would change with doctor visits and Remicade treatments every eight weeks. Some of my professors would ask me why I was limping and I could not turn my head (I have limited mobility of my neck). My professors were understanding when I had to miss class for my Remicade infusions. I just had to give them a doctor's excuse. About two weeks after my first Remicade infusion, I started feeling better. My friends were very curious about what I go through, I would tell them. Still, they did not have a full concept of what it is like to go through infusions every eight weeks or the limitations I had. I can no longer do aerobics, go for a jog, or do anything that can jar my spine. I also have arthritis in my feet, I have to avoid high heels. My professors and the friends who were concerned never had heard of ankylosing spondylitis and I had to explain what AS was. I felt gratifiied about teaching my professors something new. I was able to finish college and graduated the following spring. Now, my biggest challenge is to find my first job and I hope my future co workers will accept me and not feel uncomfortable around me. I know that Jordan is a brave young lady and it can be hard if other children are mean. Children who are healthy may not understand what it is like to deal with the pain of autoimmune arthritis.