24 for Rheumatoid Arthritis Warriors | Rheumatoid Arthritis Warrior

24 for Rheumatoid Arthritis Warriors

24 for RA with Disney car

I wanted to do a “24” segment on RA to show what it’s like to live with it 24 / 7. I wrote this down a couple months ago, but I saved it for today because I wanted to post it right after the joint protection article.

We Live With Rheumatoid Arthritis 24 / 7

Here is one hour in the life of a person with RA, delivered in three minutes.

Warning: This will be annoying journey into Life with Rheumatoid Arthritis.

Think of it as an amusement park ride which you want to try, but you know will probably also exasperate you. If you choose to board this ride, please be aware that nausea is a strong possibility. Stay inside the vehicle until it comes to a complete stop. That will be in approximately 3 minutes. Enjoy the ride.

Last night I was awakened several times by noises in the house. It was not an intruder. It was my knees. I turned to my right side; neck clicking. I turned to my left; shoulder grinding. Back on my back to for deep breathing; no way to keep my elbow from touching the bed.

Anyway, I’m tired today. I feel like slept on the tracks while trains ran over me all night long.

Ouch. My knees are screaming. It breaks into my thoughts.

I am not hungry, but I will eat breakfast soon so I can take meds. That’ll help. And vitamins. Yeah, my cure. Just eat right and I’ll be fine…

Laundry left that I could not finish last night. After six p.m. I can barely move. Bending to open the dryer: POP! That was my hip. Opening the washer lid with the sides of my hands; my fingers are too weak. It pulls them out of place. Wet laundry is heavy. When I try to pull out one piece, the washer seems to pull it back. Oh my gosh! My big toe is screaming. Pulling the laundry with all my might, I’m dropping it down to the dryer door.

Starting a new load means soap. I got a little bottle, but it still weighs 40 pounds, to me anyway. I reach up to open the cupboard and my shoulder grinds loudly. I call out to my daughter in the next room: Did you hear that? I do my drop / fly trick: I get a hold of the handle on the soap bottle and let it drop down to the washer top: bang. It is falling by gravity and I just have to stop it from going all the way to the floor.

Grabbing the bottle lid with the whole hand, I ease it off. It’s not tight because no one else touches it besides me. I do my spill-pour trick: I put the lid low inside the machine and I spill down into it so I don’t have to lift the bottle to pour.

Drag up a load I sorted yesterday and push it into the washer. I turn the dials with my special technique using four fingers as if they were one; hoping to prevent ulnar deviation (turning toward the outside of the hand). I turn and bump my shoulder on the cupboard as I close it. It will not stop hurting in a few moments like it did once upon a time when RA was not 24/7. It will hurt more and be sore for a couple of hours.

There are laundry baskets between me and the door. I can’t step over them because of my hips, so I just step into them.

My toddler needs help to get dressed and make his bed. Slowly, I bend and pick up toys as I talk to him cheerfully about our day. I cannot fluff his pillow because my fingers are not able. I smooth the sheet the best I can and lay the quilt on top.

It hurts my fingers to use the drawer pulls. It’s as if the drawer pulls back, trying to separate my fingers from my hands. I get his clothes and sit down in the chair. My wrists are killing me as I hold out his pants for him to step in. Hurry up! I can’t keep my hands in this position for long. He wants juice.

I shuffle to the kitchen. Both hands grab the fridge door handle. I bend my knees and pull with all my might. It won’t come. OOf. Finally, it pops open. The orange juice is full. I cannot reach up and take it with a hand. I move whatever is in the way and reach up with both full hands and tip it into my arms. I hug the juice to the counter. I plop the bottle down.

Cups: Reach up or bend down? Up for a glass which seems to weigh 10 pounds or down to get a plastic cup. I always pick cup. Pop goes my hip and my knee. The sounds are usually accompanied by pain. The cups are stuck together and I cannot get one apart. One of my kids runs to the rescue. I could do the spill / pour with the OJ into the sink, but I have help and I gladly accept it.

My daughter pours some milk into a cup so I can add what I want to my cereal. I cannot pour from the gallon. She takes good care of me.

If you have RA, you may have nodded along with me. If not, try to imagine how annoying it would be to not only READ it, but to LIVE it 24/7.

This has been the beginning of a typical morning in the life of a Rheumatoid Arthritis patient. Many of us are worse. Some are much better. I would have liked to bring you more of this morning, but no sponsors would agree to broadcast such dismal programming. As a matter of fact, this “half hour in the life” segment has been brought to you solely by Rheumatoid Arthritis Warrior.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

13 thoughts on “24 for Rheumatoid Arthritis Warriors

  • August 12, 2009 at 8:35 am
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    I do not have the challenges that you face in this article – at least not yet. I will admit there are days when I am pretty bad: can't pour the milk without spilling, takes to hands to lift something, pain from minor bumps, etc.

    I appreciate that you are committing time and talent to producing this blog. I appreciate it so much. It makes a difference in my life with RA.

    Reply
  • August 12, 2009 at 10:37 am
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    I'm not usually as bad as that either, but my hands and wrists are swollen and achy frequently. I always wondered why my joints always made so much noise. I didn't realize that other RAers have that. I have nights like what you described. It's annoying when you can't find a comfortable spot to sleep. The other night I couldn't sleep on one side because of my hip. I couldn't sleep on the other side because of my shoulder. I couldn't sleep on my back because of my elbow!! Aaaarg! Oh well, I just try to laugh at these situations!!

    Reply
  • September 13, 2009 at 5:27 pm
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    oh the laundry one made me LAFF ..only we can laff right? i always get fred to lift it out and pour ;o) its the worst !

    Reply
  • June 11, 2010 at 11:05 am
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    Oh Kelly thanks for talking about me again (wink) or is it “for” me?
    anyway… I will never do the tilt and drop (drop/fly) trick with a crock pot again… i have learned to keep it to the things that i dont mind getting beaned with. Like you say.. chose the plastic..not the glass.
    Warm,gentle hugs

    Reply
  • July 25, 2011 at 7:49 pm
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    it reminds me of my great desire to go to antique shows. Not necessarily to buy something, but to look, to learn, to price and yes, maybe find that wonderful treasure. My husband tries to reason with me and get me to stop going at all or else to go for 15 minutes but I so want to go! The problem of course is the RA especially in my feet. I went to a show without him last weekend, for 2 hours. I took my cane, I took breaks, I walked around in a slow, leisurely way. And I ended up in RA agony just because I wanted to do something I can not do. He does’t understand why I went. My best solution is to go to one antique store and leave behind the shows.

    Reply
  • August 25, 2011 at 10:00 pm
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    Oh my! I know this is an old post, but man oh man: you’ve hit the nail on the head. I am not as affected as you are, but maybe half of the tricks you use I have to use as well. I am so so glad that I found this site a few weeks back. It is a sanity saver, God bless you Kelly.

    Reply
  • January 18, 2012 at 12:54 pm
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    Thank you very much for this site.I dont like to go to the dr,probably like most folks.Iam thinking bout goin to a health store for supplement.

    Reply
  • March 6, 2012 at 11:10 am
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    I’ve had a diagnosis of RA for one month but all the symptoms for some time. I read the post and came face-to-face with my denial. I feel like you placed a camera in my home and watched me throughout the day. Any advice on how to accept my new reality?

    Reply
  • August 4, 2012 at 5:17 am
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    Wow. By comparison I am still doing very well. Today, for the first time, I was unable to pull out the knob for the shower. I felt so weak, I had pulled so hard I was shaking. Luckily my husband came in and did it for me. Cried through the whole shower, feeling so helpless. Then as the day progressed, and I read this blog, I realized I am not helpless. I have my family, friends, and rheum mates for love and support. Thanks so much to you all!

    Reply
  • February 16, 2013 at 5:22 am
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    Hi Ms Young….

    I’ve been following your postings for awhile now….
    My wife encourages me to write my comments in order to share how I feel, rather than keeping to myself, which is not too healthy mentally….
    I had a good laugh and cry at the same time while reading your “24 for RA Warriors”, I feel the same almost everyday and sometimes part of if not the whole day….
    Just saw my doctor on Valentine’s Day, feels more like being on American Idol audition where I got 4 Nos for failing to qualify for being a RA patient because I don’t have at least 4 of 7 markers required to be certified RA….
    My pains are still real and present but there’s nothing my doctor can do or prescribe until my condition worsens to the point that they show on tests and charts….
    Sorry for unloading my feelings here, it sucks to have RA….
    Thanks for the wonderful articles which I can relate to, and helps my wife to understand better in order to take care of me, God blessed you and her and everyone here….

    Reply
  • October 25, 2015 at 9:25 pm
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    This sounds exactly like me!, except I’m on a farm. It’ is getting in my way of everyday living….

    Reply
  • January 9, 2016 at 6:38 pm
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    Even though this is an old post I just read it. Then I cried. Someone finally understands. This has become me just within the last 3 months. I’ve been diagnosed for five years but have had it much longer….just took awhile to diagnose. I am in severe pain most of the time and exhaustion is so bad. I’m frustrated, overwhelmed and want my old me back. I’m only 45 but feel 90. Joints I’ve not had issues with are suddenly hit with a vengeance. This weekend I’ve been useless. I’ve slept and laid around more than ever because my pain in my shoulder is so bad I can’t even use my arm. This is hard for me bc I was someone who never stopped. Thank you again!

    Reply

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