Sunday, July 19, 2009

The Rheumatoid Arthritis Warrior's RA

The Rheumatoid Arthritis Warrior blog is not about me. But this one is.

This blog is not about me. It is about fighting Rheumatoid Arthritis. I DO have RA, but you know what I mean. Of course, I can only show you the world through my own eyes anyway. However, today I will focus on my own RA.

You have been warned…

If you are still reading, I assume you don’t mind hearing a little about my own experience with Rheumatoid Arthritis.

My RA has affected every joint. And other bodily systems. I know that several of you are like me. You have sent me your stories.

Also, I had symptoms of Rheumatoid Arthritis which would flare and remit for about 27 years. That is until that fateful day on which it became what I call “full-blown.” I know several of you are with me there, too. (See Palindromic RA.)

For the past three and a half years, the Rheumatoid Arthritis has been without a remission. There has not been a single moment without its pain and stiffness and disability. The only variety from day to day is the number of affected joints. It usually ranges from 7 to about 15 joints at a time.

I know I am not utterly alone there either. (See the 4 Courses post.) As you know, studies on Rheumatoid Arthritis have not been adequate to sufficiently document or understand the disease. However, another report I just read confirms that 10 to 15 percent of what I call “RA-ers” are like me: no remissions. No flares. Just Rheumatoid Arthritis. 24/7.

The UK report calls this course of RA “Unrelentingly destructive.” (To view report, click here; then click “full report” and scroll down to page 4 for diagram. Thanks to Angela at FunkyArthur for helping me find that.)

So, some days are hard days - yeah. However, the other days are harder.

Again, just like so MANY of you have written to me, I do not complain. If I were to do that, complaining would fill my days. And if I did complain, who could believe there is this much RA?

Even before I got sick, I always said this to my family: “I am sorry. I tried not to be a person.”

This is what I meant by that: To not ever articulate any pain. To not ever be too tired to say “yes.” To not ever fail. And, by the way, a few of you have confessed the same thing to me in your messages, too.

Of course that is ridiculous! And I can hear my friend from Oz telling me that it is probably pride that made me think that way. Anyway, as hard as I tried not to “be a person,” I am. And you are, too!

Consequently, as hard as I try to avoid it, sometimes, the blog is about me. After all, I am the person who writes it.

I confess: I am a person who is fighting Rheumatoid Arthritis. And I have insurance issues. And I am trying to find a new doctor. And I am struggling like the dickens to get my website published which I have been working on for a couple of years. So, if you think of it, could you pray for me, too?


Postscript: This weekend, I took time to catch up on a couple of RA blogs. (Isn’t it grand there are so many that I can’t keep up?!!) I have even found 2 this week which use the word “warrior” when discussing Rheumatoid Arthritis. Our movement definitely continues to gain momentum. Fight on! (More on “warrior” in an upcoming post…)

9 comments:

MissDazey said...

Kelly,
Of course, you are a “person.” One that is extra special, very intelligent, and caring. AND A CHILD OF A LOVING LORD! I know that you younger Mothers have so much on your plates that it’s hard to slow down. Take one baby step, breathe in, and tomorrow will seem better. I PROMISE.

I complain loud and often. After all, not expressing difficulties and/or suffering in silence would not make the RA and OA go away

Kelly said...

Thank you, Miss D. Very sweet.

Noelle said...

Kelly,

My prayers are with you. I have been trying and trying to not complain, to push on as always, and to try to not acknowledge or give in to my exhaustion. That plan doesn't seem to be going very well. :-) A couple of my nurse friends have told me to not allow the RA to define me. I haven't totally wrapped my head around that concept and how I go about doing that, but this week I think the RA is calling the shots.

The blog is about you. It is about all of us, with a rippling affect. It connects with me, and with everyone who is on this site and with families and friends and co-workers and acquaintances of all of us. And when you give so freely of yourself, you allow us to be real in our struggles. Being real allows us to confront this as a whole.

I will pray for you, my friend.
Noelle

MissDazey said...

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.

Kelly said...

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.

Tanja said...

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 ;) )

Release the Stars said...

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

Aiko

Kay Litchy said...

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.

Kelly said...

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! :D