What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle | Rheumatoid Arthritis Warrior

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

RA and shopping post

A dirty little secret of RA: The Usage Principle

Certain aspects of Rheumatoid Arthritis are invisible. It’s hard to track with an invisible illness. But lucky for y’all, I know what living with RA is and I’m willing to tell the secrets.

So, if you don’t have RA , prepare to have your eyes opened. And if you are an RA’er yourself, take pleasure in knowing you are understood here. Enjoy the ride and I’ll be glad to validate your parking, too.

One revolutionary reality of the Usage Principle: Moving makes RA worse

Let’s talk about moving. There are times when stiffness, swelling, or pain prevents movement. There are other times when we can move, but there are consequences. Understanding how this works would forever transform the advice given by rheumatologists and other arthritis “experts.”

In a recent comment on the blog, Jane explained the consequences of this principle. She said, “I have spent the last week in bed with flared up hips from going to a band competition where I had to walk for a long way and then sit in bleachers for several hours. My hips flared up, I feel like I am walking with bone rubbing bone. Prior to that, I was feeling fairly well.” Moving around too much and sitting still too long without proper support left Jane unable to move during the following week. It’s perfectly ridiculous – unless you have Rheumatoid Arthritis.

Moving usually makes RA worse. I think I’ve tried to explain this too gently in the past. I need to say it more slowly so that we can bridge the RA language barrier: Moving usually makes bad RA worse.

Yes, yes, there are milder cases of Rheumatoid Arthritis which only affect a couple of joints. There are also cases of Palindromic RA. For those dear people, I have this advice: Move as much as possible while you can. I hope you do not ever get the full-blown RA that we are discussing here today. But in case that is in your future, do everything that you would wish you could do again. Don’t waste time.

“The shopping problem”

When it gets to the point that I am knocking on Old Mother Hubbard’s door to borrow some food, I give in and go to the store. It was not always this way. Have you read about any of my former shopping practices? I loved to go at off hours so it did not take time out from my family or my busy schedule.

Here is how it works now: When we are getting desperate, I go to the store. I don’t dare go alone. We get out of the car. One of my kids grabs for my purse. Often, I say this: “Oh, no. I can carry it.” But, they know the Usage Principle, so they are not be fooled by my delusional attempts to do everything for myself.

At first, I can walk at a normal pace. There may be half a dozen joints in pain, but I am fortified by ibuprophen and my optimism. I’m happily distracted by great deals over here and cute babies over there. I converse with employees and chit chat with other customers. Gradually, I move more slowly.

After about 15 minutes, the Rheumatoid Arthritis makes my knees, feet, and elbows hurt. Being adept at ignoring pain, I walk on. The foot pain gets worse, but I hardly notice it because one at a time my hips go “out.” Since it’s much harder to walk, I progress more slowly now.  My helper runs back and forth to get things while I move slowly with the cart.

By the time we hit the half-hour mark, the scene is worthy of stares.  I’ve read a lot about stares and Rheumatoid Arthritis, so I don’t feel too peculiar. I move very slowly and look for anywhere I can find to sit down – even the floor. People really don’t like it when you sit or lean on a display or any part of the checkout lane.

Between 45 minutes to an hour after I first entered the store, I’m trying to leave. I can hardly walk, shuffling my feet and leaning on anything I can for support. The pain is horrible, but the frustration is worse.

The next several hours will be very difficult because of The Usage Principle. I do not give in to the Rheumatoid Arthritis, but I am not the winner either. I always go down fighting, but I go down. RA is a very powerful adversary.

The difference is RA

The difference between me and other people is neither that I’m lazy or crazy. So, please do not recommend psychiatry or physical therapy to fix this problem. The difference between me and other Wal-Mart shoppers is Rheumatoid Arthritis.

I realize how much RA can sound like malingering. Like most people with RA , I endure reactions of skepticism. Who can believe something so invisible can be so powerful?

Person without RA, this is your lucky day

You are lucky to read this blog because I know the truth, having lived on both sides of this fence. Unless you have, you may not know. However, you can take my word for it. I have told you my secret: The Usage Principle.

Note: The “shopping problem” is also known as the “typing problem”, the “gardening problem”, or the “went to a football game problem”… these are all demonstrations of The Usage Principle.

Sequel to The Usage Principle: What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?

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/

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

    • January 27, 2012 at 4:05 pm
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      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 🙂

      Reply
      • January 31, 2012 at 7:08 pm
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        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!

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  • November 6, 2009 at 11:17 am
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    Well said Kelly….and understood. I hope your weekend with relatives is good & goes by really fast. 🙂

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  • November 6, 2009 at 1:11 pm
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    This is absolutely like it is. Although I’m not to this point yet, I’ve had relatives who were, and it was painful to see. They were stoic, but suffering. I’m glad you brought it out into the open so those w/o RA (or any kind of arthritis) might learn a thing or two when meeting a person w/ RA. I always love your blogs…

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  • November 6, 2009 at 2:14 pm
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    I’ve experienced the “Usage Principle” too many times. Experts recommend swimming for RA patients. The past two times I tried swimming, I could barely walk as my knee that has damaged cartilage was screaming at me day and night!

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  • November 6, 2009 at 3:36 pm
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    outstanding. I was seriously wincing in pain for you as I read about your shopping trip….well written and true. thank you k.

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  • November 6, 2009 at 3:37 pm
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    Sister, I know how you feel, I use the shopping cart to lean on. I don’t care what people think. I just smile at them!
    Yep the usage principal!!!

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  • November 6, 2009 at 3:38 pm
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    You surely must be able to read my mind, I had to go shopping yesterday & it was horrible, my knees hurt, my neck hurt and I saw everybody I knew! And of course, they all say ” Wow, you have lost weight, you must be feeling sooooo much better! You look great!” If they only knew how hard it is to walk all over Wmart, gather groceries, off high and … Read Morelow shelves, ant then knowing you have to unload it onto the checkout, bag it then load it into the car and you know the rest, it is VERY hard on us folks, but we are SURVIVORS and we do it for our family. But Yes, I use the buggy to lean on, never go into Wmart without getting a buggy, it is a security thing!

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  • November 6, 2009 at 3:39 pm
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    Thanks for sharing, Kelly. I’m very bad about not telling how things are. I bluff my way thru, because I don’t want sympathy. Maybe it’s denial – or rebellion.

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  • November 6, 2009 at 3:40 pm
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    I know just how you feel Jodi, to me RA is my dirty little secret. I am not sure if it’s that I don’t want sympathy or I don’t want people to think I am complainer. It could even be the fact I am so sick of explaining something that no one understands anyway and getting the lame comments that I know everyone can relate to!

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  • November 6, 2009 at 3:40 pm
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    I’ve been putting off shopping for 2 weeks now… I can relate (but I’m not as much in pain as the rest of you–but bad enough). Thanks for the post and sharing what we are all thinking.

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  • November 6, 2009 at 4:59 pm
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    I can relate to the shopping experince. It has become too much for me lately. I try to run into small stores so I am not stuck running all over a big store (i.e., Walmart)looking for what I need. I am relieved that an Aldi’s store opened a quarter of the mile from my house. When it comes to my shopping experince, I don’t feel like driving farther than I have to. Everything is hard with RA, walking, sitting, you name it. I am going on a month of pain in my entire left foot, with swelling escalating into my left hips. This is my life now. I accept it, but it isn’t always easy. I hate to see others suffering from RA, but I am relieved that I am not alone.

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  • November 6, 2009 at 11:21 pm
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    Kelly, when I read this, I swear I felt like you were telling my story, our story, girl you know the art of RA and hit it everytime like a nail on the hammer….. this is exactly what working out or doing too much does to me, one day of yard work and I am down for 3 days….thank you for wording it so well

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  • November 6, 2009 at 11:46 pm
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    You are so right! I am completely wiped out and in pain from my neck to my toes after going to walmart for groceries. The rest of the day is wasted because I can barely move and just want to rest!

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  • November 8, 2009 at 9:38 am
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    Kelly, I can’t walk at a normal pace, but I have a high endurance rating. I walk, stand, climb stairs for 12 hour shifts at work. Some days after work it is all that I can do to make myself stop and pick up a few things that we need. But I’m looking at the bright side, at least I’ve not shown up on the people of Wal-Mart web page yet.
    http://www.peopleofwalmart.com/
    Thanks for the post.

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  • November 8, 2009 at 9:33 pm
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    Kelly, amazing blog and SO the story of my life!! I try and get in and out as quickly as possible so that I never hit the 45 min mark but the other week I did have the bagger put all of my groceries in the car for me, I had been in the store for almost 30 mins which is 10 min too long. They all looked at me funny, a 26 yr old woman who looks perfectly fine needs help!?! Im sure they thought I was lazy. But hey I survived another shopping trip 🙂 And why aren’t there more people at Sam’s Club to lift heavy things for us?!?!

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  • November 9, 2009 at 2:39 pm
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    Optimism is a wonderful thing. Both me and my OH are full of it lol. I have RA & he has AS so the blind leading the blind in our household lol.
    Grocery shopping online is superb for days when we’ve overdone the Usage Principal with general housework.
    Our motto now is “If we can, we do. If we can’t, we don’t”

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    • November 10, 2009 at 8:44 am
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      I love your motto. I have said something almost exactly the same here on the blog with regard to exercise. Cheers to your lovely attitude. :rainbow:

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  • November 12, 2009 at 11:27 am
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    Kelly, I am laughing so hard it hurt’s…. The Usage Principle is sooooooo true,,, I love the way you think,,,, it is funny but not so much because it is sadly true…. thanks for the humor I will think of this as I rally my possie of people going with me to Walmart today to shop for the dreaded groceries…. I may take the electric cart today, it may be funny to endure the stares and be able to laugh….thanks my friend…. thinkin’ of you and smiling….

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  • November 12, 2009 at 1:54 pm
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    OMG! I live the Usage Principle daily but had not heard it described so well. My family has adjusted to the fact that I will look “fine” and then all of a sudden I have to sit down and rest.

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  • January 22, 2010 at 9:45 am
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    You just described my trip to the grocery store every weekend! And people really don’t understand this concept!

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  • February 5, 2010 at 11:41 am
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    Dear Kelly,

    I thank God for you and the transparency with which you write!!!!!!! Thank you for this blog and helping so many of us realize it’s not just “ME”.
    May God Bless your faithfulness!

    Very appreciative RA sister

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    • February 5, 2010 at 5:55 pm
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      Thank you very much, Connie.
      I try hard to make it clear what it’s like to be me (us) without chasing people away because it sounds like “whining” – It’s hard because some are defensive & do not want to hear about this…

      Would be fun to write about something people really like to hear about some day… O:-)

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      • February 10, 2010 at 10:50 am
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        Dear Kelly,

        Please keep doing exactly what you’re doing! I can’t imagine anyone with RA being chased away by the truth.
        It is so refreshing to read your blog and the replies.
        We all need the support and humor provided on these pages.

        You have a gift my friend, keep shining for HIS glory——-I for one REALLY LIKE HEARING what you have to say!!!!!!!!!

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  • March 15, 2010 at 9:13 pm
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    I found a cane on Amazon that can be opened into a little seat. I use it every time I go shopping, just sit down for a while two or three times. Makes a huge difference. Good luck, all.

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  • May 3, 2010 at 4:04 pm
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    I remember when shopping was an enjoyable experience. Now I just try and limit the time I am shopping as much as possible. My kids are a big help bringing in groceries. It is frustrating dealing with the limitations this disease imposes on me. When I finish I feel like I need to take a nap. We have to use our joints to keep up with mobility but then I pay for it after. I don’t get this disease at all.

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    • May 4, 2010 at 8:36 pm
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      Shopping for me means dragging my feet from one department to the next & looking for something to lean on or sit on because of screaming knees or ankles or hips or toes – Last week, I had to take my sons shopping for clothes – I mostly sat and advised while they shopped. But there is still plenty of walking involved. Every time we do something like that, I wonder whether I’ll make it to the car to get home.

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  • May 6, 2010 at 8:35 am
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    I hope this will make you smile. I’ve been right where you described every fortnight, trudging round the supermarket just longing to get to the end & get home to rest & I didn’t even do the packing or unpacking!! I’ve now taken to doing my shopping online & when the delivery man arrives with my goodies I nicely ask if he’d mind bringing the bags to the kitchen for me so I can unpack and put away, explaining that I have RA. I’ve yet to meet one that isn’t willing. However yesterday my daughter 10, & two of her friends, one younger and one older, were out playing on the grass when the Asda man arrived. By the time I’d managed to get off the sofa I had all 3 children unloading the boxes off the delivery van and bringing them to the kitchen for me 🙂 We rewarded them with ice-creams, but oh boy did that make me smile.
    My eldest daughter 19 then helped me put the groceries away. I am blessed 🙂
    Thanks for a fantastic blog entry Kelly. Gilly

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    • May 7, 2010 at 3:49 pm
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      What a wonderful picture your story is. I feel like I was watching a sweet movie. Made me think of the milkman when I was a girl.

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  • June 7, 2010 at 11:27 pm
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    though i have been diagnosed having Rheumatoid Arthritis in spite of having ra factor test report negative.my doctor hasn’t prescribed any other tests.he has started with the ra treatment since a week.m so confused if i have Rheumatoid Arthritis or Palindromic RA…i do have all the symptoms of Rheumatoid Arthritis…but after reading this blog i think i have mild symptoms..though my body hurts a lot.5 days in a week i have stiffness in my body and sometimes i can’t even afford to comb my hair.please help me 🙁

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    • June 8, 2010 at 12:43 am
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      different-Meah, I have been that way too – I couldn’t even come my hair or clean my teeth. RA symptoms can vary from mild to severe, even in the same patient. It might help you to know that the treatment might be the same whether your RA is palindromic or not if your doctor is trying to be aggressive against the disease so that it does not take hold even more or become worse. That one (Rf) test is not the most important indicator of RA. Sometimes, people with RA that is palindromic & who have no damage & very little symptoms have high Rf. The diagnosis of RA is made by a combination of factors & the most important is your symptoms. Did you read through the Do I Have RA? article on the top menu? I’m sorry this is so frustrating for you.

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  • June 16, 2010 at 2:24 am
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    Hi Kelly – I have been wanting to write something for a couple of weeks or so now – after I first came across your wonderful website. I can’t tell you what it feels like to read some of my own feelings written here. I am one of the lucky ones. My pain is always there – but not always to the extent of most of your readers.
    I was officially diagnosed with RA in approx Sept 2008 – my blood tests showed highly elevated CRPs, RF and ESR. My ESR has been ‘up’ for a long time. I am a Registered Nurse and disgracefully knew only a small amount about RA until I was diagnosed.
    As well as RA I have Type 2 Diabetes and severe lower back pain following 2 ruptured discs. Because of this I have been on strong pain meds for a number of years. This I truly beleive has masked a lot of pain and allows me to move around day to day.
    I saw my Rheumatologist in about April 2009 and initially he seemed very empathetic and linked a lot of what I now know to be symptoms. However over the last year – he has become what seems like more cynical. Yes I am overweight and of course the prednisone hasn’t helped. But I have managed to lose 26 pounds over the past few months and without exercising.
    My frustration about Drs and exercise is enough to make me cry. In fact reading your blog and subsequent posts relating to pain and exercise – I had tears rolling down my cheeks. Prior to this even though I was fairly sure that I wasn’t wrong about the pain relating to exercise (please note I didn’t say I was right) – but having my Rheumatologist tell me that I wasn’t taking my disease seriously was so upsetting – I was really angry. At that appointment he gave me a steroid injection in my left knee as this has always been the worst knee (though my right is fast catching up). Shortly afterwards as I was paying for my appointment and I became very itchy and a feeling of anxiousness came over me (because of a reaction to the injection). The receptionist went to fetch the Rheumatologist – I could tell he was confused (not exactly reassuring) and I said to him ‘You are thinking the same as me – how can there be a reaction when Prednisone is given when there is a reaction to a drug. It must be one of the additives’. He says – if it doesn’t settle – go and see your GP. Fine – except for the fact that I was 3 hours from home and my GP!!! My friend who had accompanied me took me to a pharmacy and I took some Phenergan which settled the itching within about 20 minutes.
    Since I first saw this man as I said earlier – I have lost 26 pounds, but because their scales are old household scales and they insist on weighing me on the carpet – it generally doesn’t reflect on the scales. I am normally a fairly forthright person, but I think the past few months have worn me down. I know this blog covers more than just the exercise bit it all seems linked together.
    I love this site and hope to continue reading and sharing with you all. PS I live in Australia.

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    • June 16, 2010 at 8:19 am
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      It’s good to hear from you Kathryn. My grandmother and daughter have that name, with the y.
      I’m sorry RA and the lack of understanding has worn you down. It is a sad fact sometimes w/ it.
      You are right that the “exercise bit” us all linked together. For RA in flare, moving can make it hurt more. Your response to those posts on exercise is the reason I wrote them. They might not make sense to someone who is not affected the way you are, but to someone like you (and me) it is just the way it is. And so helpful to see the facts written in print.
      I hope it helps to know you aren’t alone. Are you able to get a different rheum doc there? or are you fairly stuck?

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  • June 16, 2010 at 12:01 pm
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    Thanks for your response Kelly – it is much appreciated. I get the feeling I may be posting some more here on a regular basis and am drinking in the myriad of information on the site.
    Re the rheum doc here – I spoke with Arthritis Qld this afternoon and whilst they don’t recommend a specific doc – they immediately emailed a list of Rheumatologits in my general area. There are a few names on there that I do recognise – but just need to check why they are familiar!! I don’t want to jump (as if I could anyway – faint attempt at humour there) to a familiar name until I get to check them out a bit.
    My regular doc will make a referral to another but as she is not familiar with many (as we are in a regional area and so most are in the nearest capital city)I need to research them and give her the name of someone else. So there is hope there.
    I will see my current chap on 1st July – mainly to give feedback to him. Also because I have Income Protection Insurance – I have to be careful as they can withhold my next payment on 8th July if I don’t attend. They would be only too happy to find a reason to hold my payment, but if I attend and then in my next claim I can explain a change of rheum doc. Hope that makes sense.
    As I said before – I’m usually pretty assertive, but this disease has knocked my confidence. Some days I can and do say my piece, but on more vulnerable days – somehow it becomes so much more difficult. Thanks so much for your response – it is very much appreciated

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  • September 22, 2010 at 2:58 pm
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    New to the blog; not new to RA. Here’s my question related to the o-so-familiar “usage principle”: How do you deal with people (friends, family) who, after figuring out the usage principle, proceed tell you: “So don’t!” If it’s going to mess you up, then don’t *blank*(fill in the blank with: hike/type/shop/clean/etc/etc) As in: it’s your own fault you are now suffering; you shouldn’t have *blank*-ed yesterday. Do they have a point? Should I just never do anything that might make something hurt the next day?

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    • September 23, 2010 at 8:13 pm
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      Hi Kinsha – Welcome. Reminds me of the old doctor joke where the patient says, “Doc it hurts if I do this.” Doc says, “Don’t do that.” Gee thanks. ;D

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  • November 7, 2010 at 10:09 pm
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    That grocery shopping progression is exactly how I feel every time. Picture it-I’m 28 but by 30 minutes in I am waddling, barely moving, can’t decide what to guard as I walk because everything hurts from the waist down. Then I get to the long checkout line and it is miserable to just stand and wait. I look like I am being impatient as I shift, move, and sigh. While actually I’m wondering how much more I can make my body endure knowing I still have to unload the car and put things away.

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    • November 7, 2010 at 11:05 pm
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      Kayla, I hope you wont mind if I say: I know what you mean. Me too.

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  • November 8, 2010 at 9:36 pm
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    Kelly, It is actually kind of nice to have people to relate to. I have no one here at home in the same boat, but lots of support from everyone I do have in my life!

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  • December 6, 2010 at 11:56 am
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    The trick us RAers have to learn is what is too much and what is too little. Moving around too much, as you know, causes fatigue and wicked reaction from RA, but too little leaves us stiff and sore. Moving is a must; now to learn how much is too much.

    Nice blog!

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  • January 5, 2011 at 6:58 pm
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    Hi!
    Thank you. So well said.

    Is this Kelly posting this, or someone else?
    Don’t know how you do it. I want to write so badly, but I just can’t muster up the energy to focus and to do it.

    Besides the RA, I’m n so much pain killer, so that’s probable it.

    At least I can read yours. thanks again.

    Linda

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  • January 5, 2011 at 8:41 pm
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    Hi Again,
    Sorry, I hadn’t read all the other comments till now. So it IS you ,Kelly that is posting all these wonderful messages. You write so well,expressing our very thoughts. It’s amazing how you are able. It is truly a gift, I’m sure you realize.It must give you such fullment and purpose.

    My brother wants to get me Dragon for my computer or a recorder to speak my thoughts instead of having to type.
    I hope am still able to write about my onset and my recent
    3 month stay at a Rehab. nursing home…. Quite a suprising and interesting experiences.

    God bless you,
    Linda 🙂

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    • January 6, 2011 at 11:41 am
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      Hi, Linda. Thank you for reading. I do push myself very hard, but my writing is slower now and I’m hoping to use a Dragon too. I’d love to hear your story.

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  • February 15, 2011 at 9:54 pm
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    I just read this aboutthe shopping practices. I can’t believe, that is exactly what happens to me so often. I was diagnosed three years ago and have been on a long list of meds. It almost made me cry reading this because it’s exactly what happens to me when I go shopping with my kids. RA is cruel, but also not understood by most.

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    • February 15, 2011 at 10:10 pm
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      It happens to me every time. The amount of pain & weakness I have is directly related to my activity level. The more I do, the more I hurt & the weaker I get. But it’s because the RA stays in flare – I know it’s not that way every day for every patient… But it happens a lot as these comments show.

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  • March 9, 2011 at 3:04 pm
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    I do not find it difficult telling it like it is. I am a 66 year old gentleman who was diagnosed 5 months ago. I have never been ill or in need of “HELP”. I have always ,within reason,said what was on my mind. Now I find myself asking for assistance whenever I need it and I have never been turned down or looked at as “WEIRD”.Wether your young or old asking for assistance[ without guilt or reservation]is essential at times and shold be considered a positive step in this journey. I have always opened doors,carried grocery bags,shoveled snow etc.for others in need.I now consider it “pay back” and expect my fellow human to help me.I have no problem letting one know I have RA,if necessary.This has made my life with RA easier.

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  • October 24, 2011 at 1:46 pm
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    I used to love shopping a Super Wal-mart. It is still my store of choice because of its prices and because it is the only thing available in our remote part of the country. But boy, it wears me out to walk around that store. I used to be able to shop no problem. Now I am exhausted after a shopping trip. My husband works in the town where Wal-mart is so he does most of the shopping now and this saves me physically more than I realized.

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  • October 24, 2011 at 4:50 pm
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    The Usage Principle – so true and yet so unknown to most non-RAers. Your post made me laugh out loud – you have a wonderful way of making what is basically depressing into a funny story that we can all relate to. I am lucky enough to have had periods of calm between the flares when I can gently exercise. But other times, I pay for absolutely every use of my joints… Swimming, for example, everyone wants me to swim. Joints that flare from swimming start with my neck, go to shoulders and wrists (both often terribly aggravated by swimming), elbows, fingers, hips, knees. As with walking, shopping, whatever, usage often makes things worse.

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    • October 24, 2011 at 5:22 pm
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      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.

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  • October 24, 2011 at 8:01 pm
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    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.

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  • October 25, 2011 at 6:20 am
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    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.

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    • October 25, 2011 at 9:14 am
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      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!

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  • October 25, 2011 at 11:13 am
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    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

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  • November 9, 2011 at 3:02 pm
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    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.

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    • July 25, 2012 at 12:11 am
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      Robyn I just read this, it’s wonderful and made me smile. Ty

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  • November 26, 2011 at 5:42 am
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    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.

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  • December 31, 2011 at 12:24 am
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    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…

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  • July 9, 2012 at 5:40 am
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    I have just started to do research about RA, and finally found your site. Although I am not yet officially diagnosed ( I have postponed going to the doctor, mainly due to fear of confirmation ), Im starting to believe that the pain which started on my knees, and now on my right shoulder, is RA.
    Reading on your articles, and the comments here, make me a bit thankful, coz I can see that the pain I am feeling now (though i believe it to be terrible) IS still, nothing compared to what most of you have. I pray that this is just a flare and it will remit soon…If this is not RA (wishful thinking despite the obvious symptoms?), I will be happy to continue joining this site.

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  • July 22, 2012 at 7:15 pm
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    I agree. As the inability to move increases so does my frustration. My family doesn’t understand it

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  • July 22, 2012 at 7:37 pm
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    wow……this is so me. It really really frustrates me, everyone says you need to exercise more, but if im walking around for 20 min, i sometimes cannot walk any more. I wish more people would understand this. I’m sharing this with everyone THANK YOU

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  • July 22, 2012 at 8:03 pm
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    It is so nice to be understood! My family doesn’t quite understand though they try. My RA affects my hands and wrists and mostly my thumb joints. Our use of opposable thumbs make human beings capable creatures. I surely feel like less than a human when I can’t even hold a glass or zip up my pants. Thankfully shopping trips aren’t too bad- I can still push a cart with my forearms and use my paws to grab things off the shelf! I have been having repeated dreams of putting on soft, cushy, gel ice pack “mittens” and feeling so happy. Then I wake up. I guess I should invent them!

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  • July 22, 2012 at 8:04 pm
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    Thank You !!!! It sounds like my Wal-Mart trips..I’m not alone

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