Becoming an Elder Statesman to RA
Some years ago, I joined several RA groups on Facebook. I slowly got back out of several groups that had a lot of suffering people, but not much guidance or practical help. I’ve stuck with the groups that I have found to be useful, or at least friendly, and those that can make me laugh.
Learnings from living with RA
In my quest for more knowledge and information, and sometimes a shoulder to cry on, I have slowly come to realize that in these groups, I find I have become an unwitting elder statesman, as I seem to be answering more questions than asking.
Over the past 12 years since I was diagnosed, I’ve heard, seen, and experienced most of the “cures” for RA, from “stop drinking diet coke“ (I’ve never actually drank diet coke) to tart cherry juice concentrate to rum soaked raisins. I’ve endured all of the ads for natural remedies that promise way too much and charge way, way too much.
Coming to terms with RA has been a long journey
I was previously a dance skater which takes really strong ankles. When they started to hurt I chalked it up to “high school football injury” status, only with skates. It took almost a year to see the doctor, and then only once my hands started going too, and at the prodding of one of my managers who said it sounded like classic RA to her. So I went to the doctor, who thought I was drug seeking. She did a rheumatoid factor test to appease me, and told me I had no reason for concern. But the next day I received a call from the Doctor herself apologizing. Not only was my rheumatoid factor above average, it was very high indeed and gave me a referral to a rheumatologist. I called a few days later and as expected, was told that there would be a three month wait for new patients. So I settled in to wait, but the very next day got a call from the rheumatologist saying she wanted to see me before the end of the week and gave me an appointment for two days from the call.
I was still left wanting answers
Ever have one of those ‘oh, crap” moments where you know that your life is about to change forever, you’re just not sure how? This was mine. We of course started with methotrexate, other DMARDS, NSAIDS, steroids, biologics, and everything else we could throw at it. But all the while I was still wanting answers. And getting a lot of useless information, since most of the sites I went to ended up being advertisements for the next up and coming $3000 or more a month drug, shot, or infusion.
I never really found the answers I was looking for, but what I did find is a lot of wonderful people that were pulling for each other and lifting each other up during a bad flair. Tea and sympathy can go a long way in coming to terms with this disease. Where I don’t get much leeway from my family, I find support in the three groups I still belong to. It helps to have the support that others can’t or won’t give me. These people have had my back for a long time.
But slowly and surely I have come to accept that there really aren’t any real answers, different things work differently for different people. Slowly I became aware that most of the people in my groups had been dealing with it for far less time than I have, and were as scared as I was when I was first diagnosed. I found myself answering more questions than I asked. And suddenly it struck me. I had become an elder statesman in my little corner of the RA gangs.
Outlook for the long term
I have finally come to the point that I know there is no cure, that I will probably never gain remission, and that all these drugs were a bit more toxic than I’d like. I know that there will be good days and bad days, that when I’m in a bad flair I can call my PCP and get a titre down course of prednisone, and that good days are to be cherished. I am still able to work, and since I work from home I am able to lay down and rest on my lunch hour.
I try to look at my situation with as much humor as I can, while not burdening my family or coworkers too much. I will share an article occasionally, but for support I can always go to my gang of girls online.
I've made peace with RA for the long run
I never thought I’d get to this place, I’m a rebel by nature. But after more than a decade into this situation I can say that I have finally made peace with my condition. I will work until I retire in 8 years. I will make my life work for me, and try to avoid the conditions that lead to a flare. I can’t beat this thing, but I can and will live with it come what may. In the end, what other choice do we have?
Besides, it’s one heck of an excuse to avoid having to go camping.
Do you struggle with insomnia?