Comments on: Chronic Rheumatoid Arthritis, Perspective, & the Church

By: Marianne

Marianne — Sat, 10 Mar 2012 20:40:47 +0000

I have seen both sides of the church too and definitely didn’t take this as an attack on the church or even “Christians” per se. We are all people, and I am so thankful for your words, they have been an inspiration and a lifeline since my dx just over a year ago.

Thank you.

By: Kelly Young

Kelly Young — Tue, 11 Oct 2011 03:25:56 +0000

I’m sorry Andrea. That is not the way it’s “supposed to be.” Of course, the church is just people… and many people don’t understand RA or anything outside of their own experience. It’s not how the church is called to be, but it’s common. I hope the lady will think about it what you said.

By: MomwithRA

MomwithRA — Tue, 11 Oct 2011 02:54:19 +0000

I too have struggled with my church. A lady who I thought knew my situation called me and asked me to deliver a meal to someone in our church. In 11 years my church has never brought my family a meal. In those years my Dad died of cancer and I was in intensive care for 5 days and they never brought my famiy a meal. I was pretty upfront. I said, yes I can because I deal with illness all of the time and keep meals for my family in the deep freeze ready to go since noone delivers us a meal. It just hurts when your church lets you down.

By: Kelly Young

Kelly Young — Mon, 19 Jul 2010 02:00:26 +0000

Nancy, you alos touched on so many issues, I’m not sure how to respond. I think I could do it pretty easily if it was an occasional problem. But my hands always hurt now and I have been trying to explain this for 4 1/2 yrs. RA has brought disability overnight and there have not been any of those “red carpets” or cassaroles in my direction. I think it would be easier if I could just stay home when there are flares and manage in between. But this RA has been in unrelenting flare this whole period, a little worse each day – and the “invisible disease” part has left most of them scratching their heads, thinking it’s not real.

By: Nancy Murphy

Nancy Murphy — Sat, 17 Jul 2010 03:01:40 +0000

Wow Kelly…You have touched on so many issues that I too have had those moments where I think “Is it just me???” Thanks for your honesty and gift for making us not feel alone.

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! =)

By: Kelly Young

Kelly Young — Sun, 04 Jul 2010 14:37:07 +0000

That is my dilemna too Kathy. I take the pain. But it’s a very tough choice & I think about taking pred every day. I worked hard in my life to get where I am emotionally / spiritually. I hate the idea becoming irritable. Very hard dilemma.

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.

By: Kathy

Kathy — Sun, 04 Jul 2010 14:10:40 +0000

Hi,
I have often wondered, for those of you in a lot of pain, are you taking Prednisone? The Pred keeps my pain levels down but when I try to get off it I’m miserable. The weight gain & irritability are hard to live with too though from the Pred. I’m curious to know what other people do, take the pain or the Prednisone?

By: Kelly Young

Kelly Young — Mon, 28 Jun 2010 17:11:53 +0000

Hi Rachel :heart:
I’m so glad you tried to figure out what to say! The appalling information situation you mention is what makes me do this website. Thanks for calling me honest and articulate – of course I think it’s my fault when no one gets it… we will have brighter days. :rainbow:

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!

By: Rachel

Rachel — Mon, 28 Jun 2010 16:10:12 +0000

Dear Kelly -

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

By: Kelly Young

Kelly Young — Sat, 27 Feb 2010 01:44:11 +0000

Mary, I love this part “let them figure it out.” I just read your comment on the Woman’s Day post. Do you think the 2 situations are related? I think so. Excellent points on pain scale, too.