The battle with my body

One of the words that keeps coming up when I think about 2018 and this blog is “vulnerability”. Part of the reason I wanted to write is because I want someone out there working through the same things I am to know that they are not alone and in reality, we are all just trying to figure this shit out. The idea that we are more together than apart and alone. So in order to do this effectively I have to work on bringing down built up walls and exposing things I don’t normally talk about. One of those things is the constant battle I have with my body. For this occasion, I thought I’d dig out a picture of me that I use as a goal when I think about working out…

In 2007 I decided I wanted to be a runner. I should tell you I have always been a terrible runner but, you should also know that when I do something I don’t do it half assed. I go all the way. I got myself a training schedule and I was there putting in miles, slow miles, but still, miles. One day I woke up and I went to get up out of bed and I couldn’t walk anymore. I just couldn’t walk. My knees were completely shot. Each step felt like my knees were going to break. After blood work and x-rays and c-t scans and MRI’s it was determined that I have Rheumatoid Arthritis. This flare has been the only time my blood has come up positive for R factor. So I was diagnosed with what they call “Seronegative Rheumatoid Arthritis”. That means the R factor isn’t always present in my blood but I have the symptoms and the calcification and degradation present in my joints. The doctors think I’ve had it all along as juvenile RA but all the running or whatever it was (cause it could be anything) triggered a flare. So since then, I live on medication. I take steroids and anti-inflammatories to control the flares. Interestingly, my “body goal” photo (above) was taken not long after I was diagnosed… I don’t look like sick do I?? After my first pregnancy, sometime in 2010, I began taking a weekly injectable medication so that I could get out of bed and my will to live could return. It sounds dramatic, and I am, I’m very dramatic. But, it’s true, living in pain is the worst. I feel like my body betrays me every single day. I don’t look sick. I am young and everyone is out there enjoying life doing things, and I’m here stuck in this rickety old body that wont do what I want it to do. The pain is bad but the weakness and frustration that comes with it is excruciating. I live constantly taken down by the simplest things. Even by stupid jars of marinara sauce that my hands can’t open. You don’t know frustration until you’re nearly in tears trying to open a jar while little hungry eyes watch you struggle with a stupid jar. Something so natural like carrying your baby takes all your energy and feeling like you might drop the baby if you hold him any longer. Putting on a happy face even though you’re praying your toes will fall off so that you won’t have to take another step with them. Worst of all, the cold. The cold is my absolute kryptonite. People in L.A. looove going to the snow for FUN. It’s absolute torture for me. Not even this magical medication can get me through it. Oh, and speaking of this medication, the weekly injections are THE MOST PAINFUL injection ever invented. H-o-l-y crap. They are so painful I can’t give them to myself. I don’t know how people do it. My husband has to administer them so that I can cry and scream into a pillow while he does it. I usually do this at night so that the kids don’t have to see me like this. That’s how much I hide this disease and the pain that I live with. There are countless things that remind me daily of my quiet battle. Even now, as I type, I can feel the ache in my fingers reminding me… “I’m still heeeere”. My daily life involves being in this very real battle with my body. Pushing it to its limits even for the simplest of things. I feel trapped in this body knowing that one day my hands might not be able to paint anymore. One day my hands will be so mangled that I won’t be able to hide it anymore. But I’m nothing if not a fighter and I’ll be damned if I let this shit take me down. The greatest weapon I can think of is information. Education about the disease so I can fight this disease head on and plan out my strategy against it, so I can live the best life I can while I can. So I read everything I can about Rheumatoid Arthritis. Blogs, articles, medical journals, anything to understand the disease and strategize my fight.

If you are out there fighting a quiet battle, I am too. I hear you, I see you, I feel you. In my next post I’m excited to tell you what I’m doing about it and how I’ve managed to get a grip on my RA. – for now.