I Am Not a Disease

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. It's also very draining. I don't talk about it because it makes me think of my body which is already constantly tired but it's also something that emotionally exhausts me.

With this being said, I have to share my brief past.

As I have said before, I was diagnosed at age eight. I saw my pediatric doctor who then told me to see a man named Dr.Roger Hollister. I was little, I didn't really understand most of what was happening besides I hurt, a lot. Well, Dr.H became part of my life. He helped me in ways I don't think he even realizes. His job was to fix me and he did that. He helped me, and my parents. He showed us I'm not just a sick kid. I could do whatever I wanted to do, but I should stop if it hurts too much. He made it known that my disease never ever defined me. He made me feel okay. Not just by giving me medicine, but how he spoke to me and my parents. My mom would come in with a notebook full of questions and we'd leave and she'd call with another notebook full. But he would answer those questions. He would aid to my worried mom and dad.

Dr.Hollister also showed me people who also had similar problems as me. He had a JA Camp every summer for kids with all sorts of arthritis. I felt so normal at those camps. I didn't worry about other kids thinking weird of me if I walked slow or said I needed to lay down. I didn't have to explain why me, the little 10 year old, was so tired. Everyone knew and no one cared.

Finally, we moved to New Mexico when I was eighteen. My JRA was there and I had taken many medications for it at this point. I first found a doctor in Santa Fe, NM. Her name is Dr.Hilary Norton, and she was okay. She told me she couldn't do much for me because I have been on so many drugs. She told me that maybe, just maybe, the ten years of work Dr.Hollister put in with me was wrong and that I didn't have arthritis. She said she couldn't help my pain and said I should go to a pain clinic, like at Mayo Clinic.

So, then, I found Dr.Monica Snowden in Los Alamos, NM.

I haven't liked her since I met her.

Now, I can talk about today.

Today, after two years, I was reminded yet again, that I don't like this woman. She made me feel like an abused dog who did wrong and I was being smacked with words. She told me I shouldn't have waited 2 years to see her. She asked me why and my reply was "I felt okay."

"Feeling okay" for me is not me feeling 100 percent great. Feeling okay means I have minor pain that I can ignore and live my life.

Dr.Snowden pointed out how I have "failed" (her words) over ten drugs and that there's really nothing she can do. I told her that I'm still in pain and I have noticed swelling. She said "I won't give you pain killers."

I hate pain killers. They make me feel like I'm floating and I can't feel anything. They're awful.

But, when I was seventeen, my last resort was medical marijuana. My parents helped me get my card in Colorado and I found relief for the first time in years. I'm currently in the process of getting my medical card here, in NM. I told Dr.Snowden this.

She said "I will not help you."

I didn't want her help. I just wanted to make sure I don't have joint damage, I told her. It had been a year and a half since I had been on any drug for my JRA. She lectured me on not seeing her soon enough and that it (JRA) is harder to manage when it's "out of control."

My problem here is, yes, she is correct. But I feel that it had been out of control since I left Colorado at 18.

She told me I should retry a drug - Humira - which was the most painful injection I had ever had in my entire life. She said now that I'm older I should "suck it up."

I'm not only angry at my care provided today, but it wasn't even really care. I was not provided many options I didn't know previously. I was not given hope. I was not given much besides an anxiety attack and blood work/x-ray slips.

So, I sat in the waiting room of the lab waiting for my x-rays and I was holding back tears. I remembered how much I hated this feeling.

This feeling of fighting "the disease."

Dr.Hollister didn't let it define me, so why should I? And, why should any doctor be any different?

I am not a disease. I am a person with emotions. I am a person who is trying to better myself despite all the things life has given me. I am a person and most of all, I am Leah. I am not a medical record or a chart laying around a doctor's office.

This is something I wish many doctors would realize: we as patients are not just the carrier of what you went to school for. We are people.

I feel helpless today because I'm reminded that I was once the girl who was just a disease. I am reminded of why I hurt daily. I am reminded of why I have to set 3 alarms instead of just one to wake up in the morning. I am reminded of why I have to walk slow sometimes. I am reminded of so many things I do that may be strange because I have adapted to what is 'wrong' with me. But, it's part of me, it is not me, as a whole.

I am not a disease and I never will be because I'm human.

Thanks for reading.