Comments on: What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle

By: Kelly Young

Kelly Young — Wed, 01 Feb 2012 00:08:19 +0000

I got 4 days behind on replying to comments & I’m so sorry! A rare occurance but sometimes it’s just too much. I’m so glad you found us!

By: ladyj

ladyj — Fri, 27 Jan 2012 21:05:51 +0000

Just joined the site – I am so excited – I just can’t quit reading and looking everywhere for more. I was diagnosed 9 months ago with”RAD” (I like that) and the blogs have helped me sooooo much. It feels good to know you are not alone. I see “me” when I come here but most of all I see “you” too

By: Cynthia

Cynthia — Sat, 31 Dec 2011 05:24:38 +0000

What do I think??? I think I love you for your powerful validation of our secret club. I don’t even mind that you let leak out our secret handshake… Well, the secret handshake we’d have if we could handshake…

By: Jamie

Jamie — Sat, 26 Nov 2011 10:42:35 +0000

You are very fortunate to have such wonderful family-helpers that really understand what you are dealing with. I often use the phrase “I pay the price when I do stuff” and often get a confused look because for the most part I don’t look ‘unhealthy’. There are times the price is just too much for the activity so I often don’t do the things I want to, or back out of things I committed to. Some people understand or sympathize but many don’t get it. The only real fear I have is how this is all going to play out over time. Things can change on a dime tomorrow but I don’t have the wonderful helping hands that you do so it is scary at times. It is hard when you are not use to asking for help. It truly is a roller coaster ride one with many turns and ups and downs…you can’t see what is coming most of the time. I take the good days for what they are and the others, well they are spent on the couch. I wish you all comfort and I wish that was actually a gift one could give that was tangible! Thanks again Kelly for all you do.

By: Robyn

Robyn — Wed, 09 Nov 2011 20:02:19 +0000

After readig the above and many other comments this morning I sat and these words came to me and I just wanted to share. It is not perfect, but neither am I.

ONCE UPON A TIME

Once upon a time, I could run and dance and sing with glee.
Once upon a time I loved being me.
Once upon a time seems so long ago,
Before RA entered my life and thus it is so.
Now I writher in pain, struggle and strife.
The cost of maintaining a life I once knew
The pleasure of greeting the morning dew
Once upon a time, tis so far away,
As daily I live with this thing called RA.
You and I know there is no cure,
But surely through each and every year
The life we knew is but a fleeting memory.
We struggle through this worldly place
And with blessed assurance know
One day our pain and all we face
Will be no more with the Father’s grace.
Into His arms, our bodies made pure,
For in this world there is no
RA cure.

By: Stephanie Munson

Stephanie Munson — Tue, 25 Oct 2011 15:13:09 +0000

Kelly, sometimes I feel like I am running in water. I PUSH and PUSH myself until I finaly listen to my body. I had 28 volunteers at my house for lunch Saturday. I try to do this each year for my volunteers to show my appreciation by serving them. I decorated the tables with a fall flare…..get it fall flare….not realizing I would be getting the real fall flare by evening. Luckily I have a great husband who helps me set up. a fun time was had by all. They left 4 hours later and I pushed myself to clean up. I would rather do that myself so I can reflect on the days events. But againMy hubby jumped in.. I sat on the porch when all was clean and sipped tea. My feet and hands where screaming at me and my lower back. I thought to myself, why do you push so hard. It came to me. What if I can’t do this nextyear. I am afraid what is around the corner. Its the Scarlet O’Hara syndrome. I will just think about that tomorrow.. So really in the back of my mind that is why I PUSH and PUSH!
I admire you Kelly and all your readers.
Steph

By: Kelly Young

Kelly Young — Tue, 25 Oct 2011 13:14:01 +0000

I love “speed shop” – what a great word. That’s creative!

I’m just as thankful for the comments that help me feel less alien as well!

By: madi

madi — Tue, 25 Oct 2011 10:20:30 +0000

Oh, so true, although I’d not been creative enough to give a name.

I used to be able to “speed shop,” and get through my list at each store in an hour. (Due to the economy, my need for more daycare, and all the money we spend on my meds / doctors, I have to really be careful with the grocery budget). So, I’ve become even more selective and try to write better lists, but my three hours every two weeks has turned into an entire day, even with my helpers. And there are days I just can’t face it, knowing how I’ll feel when I’m done at the store, but sitting in my driveway knowing I need to get it all put away.

And its not just grocery shopping, its every activity of every day, especially when I try to do too much in too little time. How can you save money on a grocery budget when you know there will be nothing left when you get home so you pick up (the cheapest but still edible) take – out?

Thank you, Kelly, for writing your blog. I think about these things but try not to dwell on them, I guess to keep my chin up, but it sooo helps that you write about what you write about. I don’t feel like such an alien after reading your blogs.

By: Sharon Leishman

Sharon Leishman — Tue, 25 Oct 2011 00:01:57 +0000

I had to start shopping with one of the electric carts the stores have because of the RA and the pulmonary fibrosis that was caused by the RA. I was embarrassed to use them at first but they make shopping so much easier; however, even then there are days when I have to make a list and send someone else. I’ve had a bad week coming off a virus of some kind that has affected my breathing and energy even more than normal and then my RA flared too. I can truly say I hate this and even more so with the lungs involved. I understand that I may only live 2 to 3 more years. I hope that I’m the exception to that.

By: Kelly Young

Kelly Young — Mon, 24 Oct 2011 21:22:34 +0000

Thanks for sharing. That was exactly my point in naming the prinicple – to show that it exists & for most patients is like the law of gravity. Yet, it’s not ever mentioned in the literature that has been created about our disease – until my site. Thanks for getting the humor of it too! It is the best way to explain something difficult.

For 5.5 yrs, I’ve lived without any of those “calmer” periods – only flare and progression. As far as I can tell at least 1/ 5 of us are in that boat too. There are several posts here on the related topic of exercise – and another scheduled to go up in the next day or so.