I recently had my fingers on my right hand operated on for the third time and forgot about the handshaking thing– until Church!!! I had the bandages on still and held out my left hand during our shaking time, when a man reached over and took my right hand, squeezed and asked if I knew what the proper way to shake is?? It didn’t even phase him when I did the “suck in air” with a “HELLO–THAT hurts!”look. So I said a few extra prayers that day for Grace to deal with these ignorant people, for Humility to not let them get to me and for the strength to continue to sit there with a happy face.

There is also so much to say about RA being an “invisible disease”…I learned this first hand when I was diagnosed with Cancer. Truly there was nothing physically different, and I actually felt better than before (thanx to high doses of prednisone & Rituxan), but surprisingly I had more “red carpets” rolled out for me than ever before. People seem uncomfortable around me when I have a flare up and usually avoid me, but when they found out I had cancer, they were willing to do almost anything for me. It makes me sad society can react so differently to diseases based on stereotypes or misconceptions. Why do we need to attach a form of disfiguration or mortality to get the respect we deserve? Don’t get me wrong, I don’t want people to feel sorry for me or patronize me, but some consideration for my feelings and pain would be nice at times…especially in the Lord’s House.

Thanks again for all you are doing to help with RA awareness and the camaraderie! =)

Most literature discusses prednisone as a bridge / temporary medicine only. For flares. What if RA doesn’t flare, but just stays bad all the time? Then you take it forever? I know many who do.

Doesn’t this make us realize that the disease treatments are not as good as they say since most live on prednisone (and also pain meds and anti-depressants)? Or else suffer & bite the bullet like this. My eyes have been opened to this by readers of the blog. It’s not talked about a lot in journals.

Oh, and that anger? I wrote about that last week here if you didn’t see.

And you are never late to the party here! People read the posts for many months – - just like you did!

I never really know what to say on blogs like this. I’ve had RA for 13 years but I’m only 24. And I’ve never looked at anything to do with the condition online until a week or two ago. The information is appalling! I used to think maybe I was just unlucky or too shy to explain myself properly – but even honest and articulate You has moments like this… its not my misfortune anymore but OURS – the whole of RA patients. I don’t know what to do with the anger this causes me… but I hope for brighter days for you. And US.

(And apparently I’m 6 months or so late for the party but after some thought, I’m going to post this anyway because silence only makes days like you described above worse.) <3

I figured out fairly quickly that saying I had arthritis was an invitation to hear:
“You’re too young for arthritis”
“My has that too and was cured by ”
“Oh that’s terrible! I knew someone else who had it and suffered tremendously!” (thanks, I appreciate that you understand, but not encouraging)
… and other similar comments that inevitably required lengthy discussions and RA education when all I wanted to do was escape.

So, I usually tell strangers, “I have joint problems” and let them figure it out.

Shaking hands is a dilemma for me too. It’s been better actually since my wrists autofused into one massive bony mass, but some people really pump their handshakes! I do try the hug method often.

The pain scale really irritates me sometimes. What’s my pain right this minute vs what’s the average pain I’ve had today? How high, and for how long? What about a fatigue scale? I do know researchers are working on finding better ways to report pain, thankfully, but boy oh boy do I hate the standard form at the doctor’s office.

Thanks so much for this blog and all the articles. It’s really nice to not be alone in this.