fight like a girl

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...

Today is not a good day. Today was the day I was reminded why I started writing this blog and the parts of me that I'm not a huge fan of. I wouldn't say hate because it's too strong and dislike doesn't even seem to feel right either. Today, after two years, I finally went to my Rhuematologist. Before I explain what happened and why today is not a good day. I want to explain some other things first. My history with JRA has always been something I'm not big on talking about with new people. If I know you have chronic pain or something similar, I will talk and bond with you over that. If you're just a friend and you don't see me in pain, I try to keep it that way. I try to hide it from everyone, even myself, because that is how I cope. I don't acknowledge it so therefore it is not there to me anymore. For some, this works. It works for me, mostly. But when I am reminded of pain and where it comes from, my emotions are a roller coaster of sad and angry...

Something I wish I knew well was being pain free. I have few memories of being pain free, a lot of these memories I don't remember purposely because I didn't feel good or I didn't want to remember how I felt. I remember the times I felt good, though. I remember the first time I ever felt true relief. I remember wanting to cry because I didn't know what this feeling was but I just smiled because it was a magical moment that freed me. I understood what "pain free" really meant and truly felt like. I felt lighter, all over. My toes could move and wiggle. My fingers could extend further than ever before. I could grasp things and not want to cringe or just stop because it was uncomfortable. I felt like my knees could bend and I wouldn't want to fall over after a second of repeating a motion. I felt that my body wasn't my body anymore. My back felt like I could sit straight and roll my shoulders back enough to have proper posture. If this wasn't ...