There is something about me that some of you know, and some of you don't. And even the ones who do know, probably don't really understand what it means. I have Rheumatoid Arthritis. I have lived with it since 2001 and am an expert at pretending I don't so that I make the people around me comfortable. I don't correct people when they say oh my grandmother had that or I have that in my knees. I just smile and move on. If you ask me how I am, I will almost always deflect with a question about how you are.
I recently found a wonderful page on FB, it's called RAWarrior. Warrior. I like that, I am a warrior, I fight every single day to reclaim some former shadow of my previous life. I fight every single week to inject myself with two poisons that makes me so sick sometimes I can only lay there and cry. I fight peoples misconceptions about me (but you don't look sick!) daily and I fight to keep my sanity, sense of humor and dignity with everything I have, every minute of every day. I am a warrior. I am a fighter and I am tired of hiding instead of bringing awareness to a disease that will eventually disfigure me and millions more just like me and will most assuredly contribute to cause of our deaths, in some cases years before we are ready. Sound melodramatic? I wish it was.
RA is a chronic, long-term disease that occurs because the body's immune system doesn't work the way it should. Most people associate the immune system with fighting infections. While it does this, in people with RA, the immune system also attacks the body. That's why RA is called an autoimmune disease. My body is turning on itself, attacking me and creating havoc within my body. It is like you have the flu, every day, all the time. The fatigue is debilitating and demoralizing. The pain is like a broken bone, but imagine all your bones broken and throbbing at once. There have been nights I have seriously considered just smacking my head in the wall to make it stop, even for five minutes. There have been days when I am absolutely certain that I must have bone cancer because even I can't believe pain like this cannot end in my imminent death. Sitting hurts, standing hurts, laying down hurts, breathing hurts. It can and does affect any joint in your body.
For me, I have had almost a complete involvement, hands, wrists, elbows, shoulders, neck, jaw, hips, knees, ankles, toes and also have flare ups at the tips of my ribs along my rib cage with creates some really impressive chest pain. There are times that I cannot walk and use a wheelchair, times that a cane is enough and times that I can stride (ok that's exaggerating lol) down the sidewalk with no assistance at all. And the thing is, this can literally change from day to day. So if you see me today and I am walking, be glad for me! Not snidely thinking I was using the wheelchair yesterday because I was lazy or looking for sympathy!
Another thing people don't understand are the medications we are forced to take to treat this monster. Each week I have to inject myself with two shots. One is Enbrel (which you've probably heard of from commercials) and the other is Methotrexate (a chemotherapy drug). Read the side effects sometime of either one of them. It will scare you to death. But what choice do I have? There are no safe happy drugs to treat this disease. It requires aggressive drugs because it is an aggressive disease. So every single week I know that I am going to have to face severe nausea, headaches, chills, body aches, and weird metallic tastes for days and as an added bonus, mouth sores, hair loss and always the possibility of a sudden fatal infection. I can’t be around anyone who is sick, Wal-Mart or the grocery stores are not safe, can't see the grandbabies when they have had their vaccinations and am rolling the dice with my life if I need to visit anyone in the hospital. And those are just the two main drugs I use to treat the RA; there is also another handful to treat the side effects of those two drugs and to treat the other health issues they cause. High blood pressure, heart failure, weight loss, acid reflux, etc etc etc... (Yes, Enbrel caused me to have Cardiomyopathy or heart failure as it's more commonly known, and yet I still must take it in addition to the heart meds now.)
The worst part for me recently is that I had been a success story due to Enbrel. I was able to do things I hadn't been able to for years. It was exhilarating and I thought I had finally found my magic potion. I was going to beat this disease; I was going to be "normal" again. And then reality smacked me in the head with a giant hammer. The meds stopped working. It came back full force and broke my heart. I had stuffed away the realities of the disease, went on a honeymoon with Enbrel and never looked in that box again. Wow, that was stupid. And that has really prompted me to look at myself and how far into denial I had slid. How can I expect other people to take this disease seriously if I can't even admit to myself what it is?
I have had to stop doing some things I loved, like online gaming, where I had created a huge social circle and life for myself. I had a job to do, responsibilities to tend to, people who counted on me who had no idea what I had, what my hands looked like or whether or not I was in bed with the laptop or on top of the world. I created a life that hid my disease and the limitations it imposed on me. In that world, I was perfect, normal and a leader. So now it's time for me to be open with everyone and find my place now, as I am, with my family and friends - real life and online.
This post isn't to elicit sympathy or any of that. It is to educate you, my friends and family on what this disease is and what it is doing to me and millions of others like me. On the forums of RAWarrior I realized that many of us hide our disease, are ashamed as if somehow we have caused this ourselves or that we are less in some way because of it. I hide behind trying to look/sound normal to all of you, I have lost touch with some because I wasn't able to say, listen, I can't go shop (or whatever) with you today, because I’m in too much pain. It was somehow easier to just stop calling, to isolate myself and hide behind my fear. But really, after joining this RA community here on FB, I realized that I am lonely and I am tired of hiding what in some ways is the biggest part of my life and that I am contributing to the problem of people not understanding what this disease is and what it does. Even now as I type this, I am lying in bed with the laptop because I am too sick from the meds to get up, I am afraid to hit the publish button. I am afraid I will change something between us or that you will not see me the same. But that's the point isn't it? Facing your fear and owning who you are. Thanks for reading!
P.S. Here are a few links for anyone that wants to know more.
http://www.facebook.com/arthritiswarrior
http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020
No comments:
Post a Comment