Comments on: The Rheumatoid Arthritis Warrior’s RA

By: Lisa Kemmerlin

Lisa Kemmerlin — Thu, 26 Jan 2012 17:14:03 +0000

I am fairly new to RA but I have it 24/7 also I measure mine by bearable pain and unbearable pain. I have found that no one in my inner circle understands it or even pretends to try. I can so relate to “I am sorry. I tried to not be a person.” I have always been the “go to” girl, the keeper of my family, the strong one. What happens when this girl cannot be that for everyone? Some withdrew from me. Some act as if they are in denial. My 11 year old thinks it is her job to take care of me. Where do we go from here? I have felt so alone through this. I have read many things on your site and it has enlightened me and helped me “get it” Now we need to enlighten the rest of the world.

By: Kelly Young

Kelly Young — Tue, 09 Mar 2010 17:50:27 +0000

That’s a good question, Heather. My teens were all pretty aware since I was so disabled so quickly. They are actually the biggest supporters I have and believe me more than anyone because they see me all day long. My little one – almost 5 is different. I did not want to scare him as you say. But he is rough & hurts me a lot & he’s getting to hard to pick up – so lately I’ve been telling him “Momma is sick.” or “Momma’s hands are sick – they don’t work right now.” He has to know why I can’t do things so he won’t think I just don’t want to do them. Hope that helps a little.

By: Heather

Heather — Tue, 09 Mar 2010 15:16:45 +0000

Finally I found something that makes me feel less alone. I have been struggling to get diagnosed for five years. Now, he my Rheumatologist won’t say it is full blown RA but I have joint stiffness and constant pain, swelling, redness, pleurisy, terrible fatigue, trochanter bursitis, reynauds (sp). I am on plaquenil, methotrexate, ultram for pain, prednisone for flares, cortisone shots in my hips every couple of months, and also have Fibromyalgia on top of it all. He keeps asking me about my pain… It gets better and worse and terrible but never ever goes away. Thank you for your blog. My kids are now ten and twelve and I have started to explain to them about my disease. Is there any information on HOW to tell your kids without scaring them? You are right, when you don’t talk about your pain, they believe it is not there. I just don’t talk about it because people get sick of hearing about it, see you are still working and figure you are faking it or something. No one gets it. Nice to know you do.

By: @MissDazey42

@MissDazey42 — Sun, 13 Sep 2009 22:29:58 +0000

I do like the changes, although I know it’s work. Are you feeling better? PS: I am behind reading blogs, sorry everyone.

By: Kelly

Kelly — Mon, 27 Jul 2009 21:25:57 +0000

Thanks for your comment Kay!
Sounds like you know RA too well.
Did you read the story by my friend Dorothy about her husband's RA? click here

I hope you'll say hey! to me on blogher. I just found that and you are my very first contact!

By: Kay Litchy

Kay Litchy — Mon, 27 Jul 2009 20:31:37 +0000

I ran into a link to your blog from BlogHer. My father suffered from RA until he died from cancer. At times the RA caused more pain than his cancer. Even though he's gone, I still have an interest in RA and great empathy for those who suffer.

By: Release the Stars

Release the Stars — Tue, 21 Jul 2009 03:35:45 +0000

Thanks for this post. You inspired me to keep fighting.

Aiko

By: Tanja

Tanja — Mon, 20 Jul 2009 21:31:43 +0000

Thank you for your blog, and your post.

The way I see it, I am not my illness, I am not my condition etc. However, I do have it. I'll have days where the RA takes up most of my energy. And I have days that have room for other stuff, fun stuff. I am much more than just my illness, but I will not deny its existence or its influence in my life.

(do have to still find that balance though )

By: Kelly

Kelly — Mon, 20 Jul 2009 11:31:00 +0000

Noelle,
Very helpful comment - for me and everyone else!

I hear what you are saying about "complaining" and about the fatigue - and I found myself wanting to say to you, "Noelle, you need to say how you feel. You are a person!" Haha.

I'll be addressing the "define me" part very soon on the blog.
Thanks Noelle.

By: MissDazey

MissDazey — Mon, 20 Jul 2009 11:28:06 +0000

Noelle, I loved how your well written second paragraph and message to Kelly. Thanks.

Sweeties it's OK to have the bad weeks. In fact, denial and/or not expressing feeling isn't always the best.