fight like a girl

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...

After fourteen years of having chronic pain, it becomes a different kind of normal. My normal is much different than the average twenty-one year old girl. For a very long time, I was not OK with this thought. I was constantly seeking 'normal.' Lucky for me, I realized that my normal is normal . A typical day for me is staying up really late (2-3am) and falling asleep until the afternoon and slowly waking up by laying in bed for another hour and eventually making everything happen in my day. It's not exactly ideal for many people, but it works for me. A typical night for me is staying up passed everyone else and tossing and turning for a while until I finally fall asleep. The hardest part of having my own sense of normal is knowing that I will have to explain to others that I don't need pity eyes for what I go through. Sometimes my nights suck and sometimes I actually sleep. Sometimes I don't do anything all day and some days I push my self really hard. I think...

Many people have no idea what goes along with chronic pain. By this I mean the emotional toll it takes on the person with chronic pain and those around them. At first, everyone is upset and confused. It takes a long time in that stage. Then, it turns to anger and annoyance. That sticks around for a long time as well. There's all sorts of emotions that my parents felt because they had to watch their little girl fight a battle they never thought would happen. Sure, they expected bumps and bruises or little things here and there. Never anything like chronic pain. As my mom says "I didn't know I had to worry about that." (That being JRA) I eventually learned I had to give my dad 'jobs' so he felt like he could do something for me since he hates so much he can't get rid of my pain. So, I always asked (still do) for him to cook for me. My love for food I think comes partly from this. If he didn't cook, we would go out to eat. I learned what I liked and d...

I never expected myself to be where I am today and have experienced all the things I have so far in my twenty-one years on earth. I have been told that I seem wise beyond my years or that I have an old soul. I actually do not agree with this at all. Why? I was forced to grow up and forced to feel and experience things that many people my age have never had. Or, if they have, their outlook is totally different. I can tell you my truth of the things I have been through and that truth is only true for me and may not be true for you, so keep that in mind. With all that being said, I want to tell you where I thought I would be and why I'm so glad I'm where I am now instead. When I was little, I wanted to be a vet to only dogs because I didn't like cats. I thought I would go to school with all my friends and then go to the high school up the road from me. I thought the dogs I had would be with me for a long time. I thought that you were old when you were in your twenties....