You don’t look sick…

I am laying in my bed right now wondering, am I sick with a bug or just Rheumatoid Disease sick? I can rarely be sure…

Rheumatoid Disease is an auto-immune disorder. (Huh?) This means that my immune system is not normal. I like to tell people my immune system is an overachiever. Normal immune systems only attack foreign invading bodies, like germs, diseases, things that are bad for you and going to hurt you. My immune system, like most overachievers, gets bored doing what everyone else is doing. So it does that, and does it quite well, but then it decides to do more. It attacks my healthy tissue, the stuff that makes up my body. This may be my cartilage in my knees, my organs, my eyesight… pretty much any part of me. These constant attacks cause the healthy tissues to become inflamed. All this inflammation leads to pain and further disability.

So, how do we get an overactive, overachiever immune system to stop attacking its host? We give it low doses of chemotherapy (miniscule compared to what they give cancer patients, but enough to make you nauseous and exhausted), biologics (which target specific proteins in our cells that seem to be working the wrong way), anti-inflammatories (prescription maximum doses of things like ibuprofen) to combat all the inflammation. This is in the hopes it will calm the heck down and stop doing so much, just act normal. Many of these drugs are by definition toxic. They have to be to knock down a busybody immune system. Since they are a bit toxic, they leave you feeling sick. If you feel sick often, how do you know if this is the disease making you sick, the cure making you sick or some germs making you sick…

Rheumatoid Disease also involves fatigue. This is feeling like most people feel the day after they have the flu. The problem is this is not for a day or two, but nearly every day. Every minute of every day. We learn to hide it in public. Put on a smile and just push past it. Most people I know with Rheumatoid Disease are pros at this. However, this often does not work in our favor as people tell us “you don’t look sick.” We just keep slogging through pain, exhaustion and overwhelm. Until we can’t any more. I call that “hitting the wall.” My kids know those key words. Everything we are doing stops. I must get home and get into bed. Even then, I am usually running a fever, may begin vomiting, often am like an over-tired baby who just can’t sleep. Seems like maybe I am sick…

You are feeling exhausted, running a fever and vomiting because you have just pushed yourself beyond your limit. Are you sick? Yes, yes, yes, I am sick. The big question is what kind of sick?

Last night, as I lay in bed, drenched in sweat with a fever and vomiting, the pain hit and it hit hard. I could tell you where every teeny tiny joint in my feet was located because it hurt. Each joint in my toes was aching. This is why I no longer use a top sheet. The pressure (what a few ounces maybe?) of the top sheet hurts my feet and ankles. I find positions to place my hands, wrists, ankles and feet while I am sleeping so that there is no extra pressure. It’s a very precise thing. The problem is when the pain hits like this, I am restless. No matter what position I find, in a few minutes I have to move. I toss and turn, groaning at the movement required. Lordy, if I have to get to the bathroom quickly it’s the fastest hobbling gollum-gait ever, accompanied by “ow, ow, ow!” After enough of that, I finally break down and take a pain pill. (Thank G-d for hydrocodone!)

Today, I feel better than I did (we had a storm, which often triggers the pain, and it’s passed). However, I am still wondering. Sick or just Rheumtoid Disease sick? No real way to know. Another friend I was with last evening got sick overnight. So maybe this time it is real sick… who knows? It really doesn’t matter in the long run. There are still kids to get places, things I have to do, things I want to do.

So, I’ll do what I usually do: rest as much as possible, push when I have to, medicated when I need to, and get on with living… living with Rheumatoid Disease. Huh, maybe I’m sick?