fight like a girl

Recently, I wrote a memoir for a class that I am taking and I wrote it on when I was first diagnosed with arthritis. I hope that people find comfort in it, because it is an experience I will never forget.  It's on the new page 'White Ceilings' if you want to read. Just a quick little post today. More to come later. Thanks for reading, Leah 

One of the many things that people do not tell you when you're diagnosed with JRA is that you sacrifice  so much to be able to do some of the things you love for the consequences that your body will inevitably face. This is something I have struggled with since I can remember and it's still something I really wish I had a better way of handling. But, on top of this, when you get sick it takes a long time to feel 'normal' again (whatever that normal is for you). Something that I am struggling with currently is being able to keep up. I recently found a good group of people to be hanging around and as all new friendships go, I have to explain that there are some things I just can't do or I am slow. I find myself feeling guilty for pushing myself to walk fast when everyone is at a certain pace or I feel strange asking them to slow down for me. It's an internal battle that I have always had. Most people understand but many forget which is okay. I'm okay with pe

This is my third day of classes at University of New Mexico and I am battling lots of pain with the everyday tasks that I am faced with. Yesterday, I met one girl in my class that told me about 'ARC' which is the Accessibility Resource Center at UNM. The program can set up something similar to an IEP (or what I was use to calling it, 504 plan). I realize I did not really need this when I was at the smaller campus and my classes were much smaller. But now, I am on a much larger campus and facing having to walk way more than I'm use to. This isn't a problem but, my body feels other wise. I recently got a FitBit over Christmas and I went from under 5,000 steps to almost 13,000 per day. This is great and very healthy but, my body is not happy. I feel like I am dragging and going so slow compared to the other young adults around me. I feel like I need a cushion of time which means having to wake up much earlier and feeling my stiffness dissipate as I start to move and ge

When I was young, only a few years into my diagnosis and still figuring out what was best for me, I eventually assumed I wouldn't end up going off to college. This assumption became more and more real for me. I remember my mom talking about someone she knew who had a daughter who didn't stick with her medicines once she left for school. I remember my mom telling me how important my medicines were for me to take and never to miss a dose. I remember learning each drug name, what it was for, and when I took it. I remember the shape of the pill and the color, I still can remember the first pill I ever had to swallow. Tomorrow, January 11th, I will be changing that assumption my young self had well into recent years. I will be going off to college. I will be living in the dorms and I will be taking fourteen credit hours. I remember in high school, my mom said "You know the Arthritis Foundation has a scholarship program. You should apply." I grew angry at the thought. I

There are aspects of having any form of chronic pain that no one tells you. No one tells you the 'tricks' or 'tips' for explaining to anyone you interact with that there is something wrong but you shouldn't be treated differently. No one tells you when you're in pain, you want to rip someone's head off but you just can't do that so you get mean. You get bitter. Doctor's don't tell you that's a symptom. Doctor's don't include it as a symptom because not everyone is bitter or mean when things are wrong. Some people can handle their stuff. I'm ten days away from twenty-two which just blows my mind that I've learned my tricks and my tips for how to interact. I've learned how to explain (I think). But, the way I got here took a very rocky path that made me fall on my face and cry....a lot. I remember when I was first diagnosed that I didn't know what to tell my friends. What eight year old knows how to explain a med

This past weekend I was lucky enough to go to a JA Family* day in Denver, Colorado. I got to speak on the panel that was there. My speech that I gave was not planned and was purely from the heart. I did not expect to even be on the panel, either.  But, the point of this post is, I was inspired by so many of the people who listened and even came up to me afterwards. Each and every single one of you brought me so much joy in the fact that I knew the words that I was saying were hitting home. I'm aware some of the things I said hurt by being so familiar. I know when I voiced the fact that I did not want to acknowledge that I have arthritis for a very long time. Even today, as I type away in my bed, I don't want to write the word "disease" because it makes me cringe. I do not want to be described as a diagnosis. I shared these thoughts with the parents of kids with some form of JA.  So many of you made me feel that I was exactly where I was suppose to be. I can'

Music pulsing, heartbeats pounding and all I can think about is how my big toe is falling asleep, how my left knee is about to lock but I'm pushing past it because I love this song - this band. While everyone doesn't want it to end, I'm counting down how many songs I have left until I can sit down and not get up for a while. I won't sit until I know because everything hurts more after I sit and then try to get back up.   This has been my most common rant since I can remember of wanting to be "normal."   My definition of normal is much different than yours, that's for sure.   My normal means being able to stand in lines without having to lean on something. My normal means being able to go for a run without wanting to die from my knee trying to kill me. My normal means not feeling sick and like I need to sleep for four days after a long day.   Instead, I feel like I miss out on so many things because my body is holding me back. My friends wo