Ever since I was diagnosed with Rheumatoid Arthritis, 3 years ago, I’ve had a burning question. A question that I’ve really wanted to ask but that I also really didn’t want to have answered:
“Is this as good as it’s going to get?”
Over the past 3 years I’ve been on different injectables, pills, creams, etc. Some are supposed to reduce my disease’s activity, others should take away pain. Currently, my injectable, Orencia, seems to be working. I’m not noticing any new pain, stiffness, or swelling which means this medication should be reducing the disease activity in my body. This is a good thing. The only problem is that all of the damage done while I was waiting for a diagnosis years ago and all of the damage done a year ago when I was too sick to take any rheum meds, is just that, damage. It’s damage that I thought could be repaired. It’s damage that ,until I asked my rheumatologist that question, I thought was temporary.
During my most recent visit to my rheumatologist, at my usual 3 month follow-up, we discussed the effectiveness of Orencia and how we both thought we should give it a little more time to see what we can get out of it (I’ve had 30 weekly injections thus far). She then said, our goal right now is pain management and quality of life. Huh? That’s it? To me that sounds like giving up, so I had to ask: “Is this as good as it’s going to get?”. Is my elbow going to ever get better? Is it going to hurt for the rest of my life? Will I feel good enough to exercise one day and without reason, feel like I can barely walk from the car to my front door? Will I never sit cross-legged again because my left knee is so stiff? Will compression gloves and a knee brace be a permanent part of my bedtime attire?
The questions poured out. I expected my doctor to sugarcoat things with lines like “we’re going to fight this”, “there are still plenty of medications we haven’t tried”, etc. She didn’t. She said yes, my elbows would probably hurt forever. And my feet, hands, and knee probably would too. The damage was done before I was even diagnosed.
In all honesty, her answers didn’t shock me but they definitely were a reality check. I’m 35 years old. I have a husband and two children. I have things I want to do and places I want to go. No amount of work or hope is going to change my joints but I can definitely change my mind-set. Some days are going to be hard, I’m going to need to rest, dinner will be thrown together, and that’s ok. Other days, I’m going to be dancing in the kitchen and making my children laugh hysterically while I attempt to rap.
I’m hoping for more kitchen dances.