fight like a girl

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 ...

Something I have noticed that goes with all my troubles with having chronic pain is what I call the three A's: annoyance, anger, and all over tired . It's just a state I find myself in when I am not fully balanced at that time. If I need food, sleep, water, or just peace and quiet I tend to become a monster and those three A's show up. Annoyance is what starts first. Anything small bothers me and then it grows, and bothers me more. It could be something as little as my clothes not fitting right to someone saying something slightly rude and me taking it the wrong way. Then, it goes to anger . After I'm fully annoyed by whatever poked me the wrong way, I blow up. I become the monster that I don't want to be. Everyone around me breathing makes me want to scream and if I can't escape to another place, I will scream and lash out. I try not to, and it's better, but its still a problem. After anger starts to slow down, all over tired smacks me in the face an...

During the summer, my constant state of tired can no longer be hidden as well as I would like. In the summer, people find it weird to stay in bed instead of run around outside in the heat...which sounds like my personal hell. As much as I love things that go with summer (smoothies, lemonade, shorts, flip flops, the pool, etc) I loathe the heat purely because I can't cool down enough with my long locks pinned to my head and my poodle hair becoming more obvious. I'd much rather snuggle my lovely pillows until the sun goes down and feel my burst of energy late in the evening. As many who know me well and many who are learning to know me, I wake up at night. Always have. In the summer time, I have noticed my body craves more sleep than any other time of year. I couldn't tell you why because it's not something I've actually sat down and processed. I just know that I feel best in Fall and Winter. Now, recently, I have finally been allergy tested and the pollen peaks...