I am not Pollyanna Sunshine. Not at ALL. If you know me, you know that I am irreverent, often snotty, sometimes just plain mean, usually annoyed, impatient, short-but-quick-tempered, foul-mouthed, with a humor dry enough to get me into trouble more than a couple of times. I worry and stress with the best of them, and often snap orders and insults when I do, which is a lot, usually aimed at my dear husband, bless him, sometimes at my doe-eyed children, not always under my breath or in my head the way I prefer. I am not a glass half full kind of girl. In fact, I am the girl that starts freaking out when too many good things happen, because clearly, there’s a doozy on the way. Daily imperfections and frustrations are soothing to my psyche, despite my outward appearance of irritation. If things are going wrong, then everything is right.
So you can imagine the string of curse words that escaped from my mouth when the doctor said “Rheumatoid arthritis. See a specialist.” You all know the knot of fear and panic that quickly settled into residence in my stomach. You can understand the nights of tears wondering how on earth I was going to raise three children and work more than full time and do all the things I do to drive myself into exhaustion and freakazoid panic, but that I love so much and are an important part of my life. And you likely know how the insomnia and the fear and the lack of knowledge leads to. . .internet research. Ah yes, everyone is an expert in this digital age. I relentlessly searched and read whatever I could about RA, trying to gain some insight into what my life is about to become. Which led me to the NRAS website, and immediately to begin blogging here.
Because here’s the thing: I found a lot of information online. Not a lot of hopeful information. Rheumatoid arthritis is a terrible disease. People suffer horrible chronic pain because of this disease. And I have so much respect and empathy and sympathy for the people in horrible chronic pain. You are unbelievably brave. You are warriors. I admire your strength. If my life becomes the pain and angst and trouble that I read about, not just here, but all over the internet, I will stoically attempt to carry on the way you do and I won’t do half as well. But--and I whisper this a bit shamefully-- I don’t feel that sick.
Sure, I have bad days, where I just do not want to get out of bed. There have been weekends where I didn’t. There are days I can’t hold a pen before noon. I spent weeks hobbling around barely able to walk before prednisone. My should hurt so badly last week that I walked to work in February in Maine rather than have to put a seatbelt on or turn my head to back the car out of the drive. But I could walk to work. And most days, I feel pretty good between noon and seven. And when I suck it up and ignore pain and inflammation for a few hours, I can find myself so busy and having so much fun that I can forget all about RA for a while. I got to rollerskate last week!
When I first went searching for real life stories about real women like me living with RA, things looked awfully bleak. It looked like a swift sentence to the road of disability and blue badges (loving this term – over here they are the marble-mouthed handicapped stickers. Ew.) Didn’t see a lot of “Yeah, I have RA and it sucks, but other than a bad day here and there, the Judy Garland trail mix of pills, and an occasional injection, my life hasn’t really changed.” So I decided that I will be the $%&*# beacon of light. My schtick here on the NRAS blog is to be %&*$ Pollyanna Sunshine. One more voice out there for the next me to see, saying “Yeah, I have RA and it sucks, but so does the economy and we all get on.”
So, please, my fellow bloggers, and readers, and RA’ers, forgive my glass half full attitude. It’s not really who I am. It may not even be who I want to be. It is as easy to complain about RA annoyances and pains and setbacks as it is to complain that the coffee is bad, or the weather too cold, or the grocery bill too high. And maybe later you will tell me “I told you so” when it does get worse. When the disability and the blue badges appear on my horizon. But I’m ok right now. And my doctor says there’s a good chance I can stay ok, even if it costs $20K a year in meds. And ok right now feels pretty darn good. So I’m gonna stick with that for as long as this vicious disease--and you all--will let me.