Pace Yourself: Guilt-free Pay-to-Play | Rheumatoid Arthritis Warrior

Pace Yourself: Guilt-free Pay-to-Play

It’s Roo’s birthday! Already!

My goals include making a simple M&M cake with no complicated writing although I used to spend hours with a frosting bag even for Valentine’s cookies. Roo’s doing great with school subjects and Cub Scouts and playmates. He’s funny and smart, with a mind of his own. Other parents may know what that means – we never know what he will say.

Last fall, when we discovered his vision loss, Roo started eye patching a couple of hours per day. After several months covering the strong eye with the patch, his vision improved immensely. He even achieved depth perception for the first time, learning to use both eyes at once, and eventually reducing his prescription.

Woody_eye_patchEven though Roo taught himself to read at 4, and reads beyond grade level, there was a question of whether he was able to use his eyes together so his eye doctor referred us for vision therapy. Last month, we did testing with the vision therapist and one interesting result showed he might benefit from exercises, even though he’s reading well and doesn’t have headaches: They use a vertical prism to test at what point the eyes separate one object into two, and when monocular vision is regained (seeing one object again). Roo’s results were very abnormal. Which makes sense to me since he used only one eye for over seven years.

The vision therapy exercises

I was surprised to learn the exercises are exercises. We’ve made progress already in a few weeks, and I’m learning more about how balance and movement are related to vision. But the first day (last month) had an impact on me I might never forget. We got clear instructions about what daily exercises to do, and how to make them incrementally more difficult, so that Roo is challenged, but not overwhelmed. One exercise that first day was jumping jacks. We started with feet only, and used music to help establish a rhythm. I hopped with Roo for demonstration, and he said I did great.

The whole jumping exercise was about five minutes (including breaks). I pushed myself hard to finish because of pain in an Achilles tendon. Then both Achilles tendons seemed to seize up, and I had to sit down. That evening I lay on the sofa, feeling guilty I couldn’t help Katie Beth with dinner (not unusual, unfortunately). But the next three days, I could barely walk. I took muscle relaxers and anti-inflammatories, drank fluids, and massaged my calves with creams. Heat was the only thing that gave some relief. My legs were just like the time took the Cipro.

Truth-telling about pay to play

A few years ago when I first wrote about the usage principle, I felt like one of the government leakers. I was telling a story people in our community knew about, but it had not been told before. So it was like underground information. In some of my early blog posts, you can tell I felt like a dissident.

But I’m not alone. Hundreds of comments on this blog say so – like the comment last night by Mr. C. that now his second biologic is failing him and he is “wiped out” for a few days after doing things he enjoys. It’s obvious he pushes himself as far as he can, and that appropriate doses of rest are necessary to keep functioning with active Rheumatoid Disease.

It’s not a new phenomenon

The 1953 book by an RA patient, Private World of Pain, repeatedly describes this phenomenon, discussing various situations where things are much more difficult for the author than others can grasp. She says, “we must frequently choose to do the ‘impossible’ (but) it should still be our own kind of impossible…our own feasible life.”

The laundry limbo

After I could walk again, I addressed my guilt about the mountains of laundry. With 6 people at home, and Roo the only one who doesn’t wear adult clothes now, piles grow rapidly into about 20 loads. And I must have done at least 8 that day. Even though a lot of rest was built-in, that night, I could not move. I think every cell in my body was inflamed.

Lessons for me, as much as anyone else!

  • Guilt about disease symptoms is useless and inappropriate. (The usage principle is an undeniable symptom of Rheumatoid Disease.)
  • Live the best life you can, that suits you and your loved ones, according to your values. This means sometimes you may pay to play. (I know this cake will cost some pain, but I want to do it. My fingers hurt after wrapping presents last night, but that was my choice.)
  • Pace yourself. Only you can determine appropriate doses of rest, in relation to your level of disease activity.

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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41 thoughts on “Pace Yourself: Guilt-free Pay-to-Play

  • June 20, 2013 at 12:38 pm
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    Today, I have read and I have cried. It’s now past noon and I was just able to get in the shower. This is all that I have accomplished today. The guilt overwhelms me for all I cannot do, but I feel I should do. My dishes are piled in the sink. Laundry fills the hallway. I know for every one thing that I do accomplish, there will be at least two huge consequences. The first consequence being the struggle to pull through the pain and fatigue to actually do anything at all. The second consequence will be the price I pay later. The more I push myself, the more pain I will have coming to me after I have completed my task. I worked five whole hours last night, on my feet, and I was so grouchy from the pain when I got home that I felt guilty all over again. Never mind the guilt I felt before going to work because I left the house messy and dinner uncooked. It seems like what I can accomplish is never enough. I do not meet my expectations and I’m sure I fall short in what other expect of me as well. I look perfectly capable on the outside and I’m 28 years young, so people often think I over
    exaggerate how I feel on the inside. It’s hard having not many people understand what I’m going
    through and I just wanted to thank you for always being someone I know I can relate to.

    Reply
    • June 20, 2013 at 10:30 pm
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      I can relate to everything you said too, Lacey. And I don’t know how you go to work either – I sense you are pushing yourself to the limit. If there is any way, please don’t add guilt on top of that. Even if no one around you understands, you’re not doing anything wrong.

      Reply
  • June 20, 2013 at 1:11 pm
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    Thank you for saying this again. I pay to play with my children all the time. A few weeks ago I was in bad shape, but was DETERMINED not to miss a school performance AND my other son’s state soccer tournament. I took NSAID’s, prednisone (even though it has horrible side effects for me), loads of pain medication, and I did both, and really enjoyed them. The next week I was on the sofa almost all week, minus school drop off and pick up for the younger one (older is homeschooled). I feel like I’m still recovering.

    When my disease is not completely under control (hasn’t been for about 8 years), activity makes me worse. Every time. I’ve just come off a year of working (gently) with a personal trainer, and then a “gentle waves” warm water exercise class with 90 year olds. I thought if I could just keep it up eventually I would get some benefit to exercise. But I didn’t. Even my husband said I had given it a good extended try, and he could say objectively that it made me feel worse.

    I still feel terrible now, but at least I’m not still trying to do exercise on top of it, exacerbating everything.

    Reply
    • June 20, 2013 at 10:22 pm
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      Thinking of you tonight. That’s all hard to explain to someone who hasn’t lived through it.

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  • June 20, 2013 at 1:36 pm
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    Fortunately when I turned 40 I decided I didn’t have to do anything I didn’t want to do so guilt does not influence me. I know some of you cannot even do the things you want to do, but most of us I think are driven to do more than we should. I don’t have pain or fatigue all the time it seems to come in cycles and moves around my body. There was one tennis season that both of my achilles tendons got inflammed so I had to drop out. Sometimes it is my wrists that are acting up or my tennis elbow. I miss a lot of church group activities because Wednesday seems to be a day I am most fatigued (not sure why exactly). It is what it is, I have gotten very good at acceptance and just moving on so maybe tomorrow I can do more maybe not. I have also gotten good at not over committing myself at work. I read some of your posts and know how really blessed I am to function at the level I do. I am between meds right now since I had methotrexate toxicity and ended up in the hospital in April, am weaning my steroids and waiting to find out what the next step will be.

    Reply
  • June 20, 2013 at 1:49 pm
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    I hear ya as they say. I had old highschool in town. They were going here and there. Tried to keep up knowing I will pay to play. Finally had to call it. I know when I’m gonna pay. I do things I know are gonna get me but I’m worn out with not doing something once in awhile. Thanks Kelly

    Reply
  • June 20, 2013 at 1:59 pm
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    I’m in the same boat as Casey today and this post hit home today. After driving with H on a 2 day road trip, staying a week, walking at the zoo 1 day and the 2 day drive back home, it’s taking longer to recuperate than I expected. After 10 years with RA and now being more physically able than in the past 10 years, I still have depression when the aches and fatigue hit. My friends and family also expect more from me, so I disappoint them as we’ll as myself. To do so much and then have vague pain, weakness and fatigue is so darned frustrating and hard to explain. I think I will have H read your post to help him better understand us and this mean disease….again. It is comforting that there are people who do totally get it, but not fair that you must suffer too.

    Reply
  • June 20, 2013 at 2:52 pm
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    I’m glad your son is doing well with his vision. You made me laugh. I can not imagine a set of circumstances that would induce me to do jumping jacks nowadays. I always have to calculate the price of whatever activity we’re about to do. Is it work? Then it’s one mobic, 1/2 tramadol and an aspirin, plus a real, solid meal to start and don’t forget the coffee. It might be a bad work shift and so halfway through I can take tylenol and possibly more aspirin. … Is it shopping, or driving all over creation so my daughter can do volunteer stuff? Oh well that’s probably less meds depending on how far the drive is. Is it sex? Definitely fewer meds until the next day then, holy crapola it’s all the drugs. Is it knitting? Depends, if I pick some craft project with no wrist twisting then I can do it for hours on minimal meds. If there is even a small amount of twist then it’s a limit of an hour, period. I have projects that may take another ten years to finish.

    Ah, well. We pay to play. Part of the price is that we have to be more aware of what we are able to do, and hopefully more grateful that we can do any of it.

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  • June 20, 2013 at 4:36 pm
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    Kelly, Thanks for this reminder. I often pay to play. Sometimes it is worth it but it will set me back a few days. I am trying not to have any guilt about what I can’t do. Sometimes this is difficult but I know it isn’t productive and it isn’t what I need to be doing.

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    • June 20, 2013 at 9:56 pm
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      Hi Jane. Nice to see your smile.
      We (both) should try to have the same mercy on ourselves we would gladly extend to others.

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      • June 20, 2013 at 10:16 pm
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        Kelly, You’re right. There are so many times I say to myself, “I wouldn’t think that about someone else” or whatever….

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  • June 20, 2013 at 4:56 pm
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    I totally get the pay to play concept. About four weeks ago I had started a short course of prednizone for a particularly nasty flare (or hot spots, as I call them) and at the same time had invited a neighbor farmer to pick up some bags of chicken manure for his garden. I walked him over to the stacks of feed bags full of manure and pine shavings and I tripped on a rope left on the sidewalk. I fell forward like a sawn-off tree and first hit the ground with my right hand. My first thought was “Oh, I am so going to pay for this.” then I started laughing. after I got up I said to my neighbor that I’d just started prednizone so I was virtually bullet-proof. I was, too…no hot spots, no pains. It was wonderful. Alas, after the course of prednizone was over, the impervious condition was also over. sigh.

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    • June 20, 2013 at 9:55 pm
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      hahaha, bulletproof like superman. then, RA like kryptonite. 🙂

      Reply
  • June 20, 2013 at 5:48 pm
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    Hi, Love reading the comments and knowing where you all are coming from. I live in Victoria, Australia and the one think I hate about having RA is that this disease gets no publicity and not much funding. I am sick of trying to explain my symptoms to non-sufferers and no matter how awful you feel, your blood results are fairly normal (therefore it is in your head my dear). I also have to pace myself but I rest to pay – I cannot retire until I am 65 and I am only 64 so I have had to give up all the activities I love so I can do the one activity that I don’t love. I think this scenario does not make for good mental health. I am tired of being tired and sorry if I sound like a whinger but sometimes I think I would rather have cancer. Everyone knows about cancer, you get appropriate pain relief, you get support and you get understanding. Know one (except us) knows that it is like to have RA. Keep up the good work.

    Reply
    • June 20, 2013 at 9:53 pm
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      dear Rosemary,
      I know how that is – we have no publicity or funding here either. There are commercials in TV and magazines now, but they show people dancing through dinner parties, not in pain or struggling to do daily tasks. We are working hard to address awareness and research funding in the US.
      Hopefully after one more year, you can get more rest, feel a bit better, and be able to do more things.

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    • June 21, 2013 at 10:09 am
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      “your blood results are fairly normal (therefore it is in your head my dear)”

      Oh Rosemary, this is where I am right now with finding a rheumatologist. My blood work with my internist showed an elevated anti-CCP; at the rheum everything was normal. So he said categorically “It’s not RA.” So what is it? Shrug. He’s dismissed every symptom I have, my pain, and wanted me to come off the prednisone and off the MTX my internist put me on.

      I came off the pred because I’d been on it a while, and I probably needed a break, but I’m not giving up the MTX.

      It’s so hard when we’re in the early early stages, and don’t have the “correct” blood work to get the correct care. Meanwhile the damage is happening, regardless of what our blood work shows. The symptoms are there.

      I hear you with the frustration, the depression, the wish for something people can see instead of this invisible ninja of a disease. I completely understand, and you didn’t sound out of line at all.

      Reply
      • June 21, 2013 at 6:31 pm
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        Did it occur to your rhematologist that the labs were normal because you were on methotrexate and steroids? Even on rather high doses of steroids my anti-CCP is >250, but my sed rate is 23 which is the lowest it has been since this all started last summer.

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        • June 22, 2013 at 10:12 pm
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          Of course not. Because, you know, he’s a rheumatologist and he KNOWS things.

          I see my internist Monday, and hopefully she can refer me to a rheum who doesn’t just go by lab results, but sees the symptoms and the patient, too.

          Reply
  • June 20, 2013 at 6:03 pm
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    Well said Kelly! As usual you hit the nail on the head with reality and some humor thrown in. Happy Birthday to your Roo!

    Enjoy the cake and then a nap 🙂

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  • June 20, 2013 at 9:14 pm
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    So happy that he is benefiting from the patching and vision therapy!
    Always praying for some relief for you!

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  • June 21, 2013 at 12:02 am
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    Thanks for your good wishes. I realised how awful I must sound re my comment. I am pretty well controlled on medication etc and I know there are RA folk much worse off than me and I send my best wishes to all from down under – I love you funny things that RA suffers say – so that has cheered me up.

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    • June 21, 2013 at 8:57 am
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      Dear Rosemary,
      Some things about rheumatoid – like the extreme pain, invisible disability, and relentless nature – can frustrate people and make them say things to desperately try to get the world to understand.
      Sometimes the plight of rheumatoid patients seems similar to AIDS patients previously, politically that is.
      (From my phone , please forgive errors)

      Reply
  • June 21, 2013 at 10:01 am
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    Oh, I understand the Pay to Play. I’ve been doing that since I became a wobbler in 2004, and now I have a double dose with RA. And mine is still so mild that Dr Rotten doesn’t think I have it. He’s been fired.

    I even fell so far into his opinion of “Nope, not RA” that I’d about decided I was faking it, and Wednesday I didn’t take any pain meds. None. Nada. By that evening all the residual I had was out of my system, and I was a knot of pain. So I tried taking just 1 Ultram and 2 Tylenol — that addressed my wrists, elbows and ankles, but for some reason there wasn’t enough left for my toes and fingers. The good thing there was I got reminded that my fingers and toes don’t work like they used to!

    I used to have monkey toes — I could pick things up with them easily. Not anymore. And I was the designated jar and bottle opener — now I can barely get a packet of Maxalt (migraine med) open, much less any jars or bottles, even with my jar opener thingy.

    And to top it off, last night (after a full day on full meds — YAY!) one of my wobbler friends said he was “appalled” at The Spoon Theory, because “who wants to run around baring your soul and all your issues to people without being asked?” I told him he was missing the point.

    On the upside, I got a Roomba for my birthday, because the last time I vacuumed/swept I had enough fluff and fur to make 2 medium dogs or 1 Great Dane. Cylon (the Roomba) will be able to keep the dirt down to a dull roar so that when I do a deep cleaning, it won’t take as long or be as traumatic.

    There are things we can do and ways we can pack more living into the “feel pretty good” times we have, which helps keep us from feeling guilty when we run out of spoons.

    Reply
  • June 21, 2013 at 1:51 pm
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    It took a long time to realize that when I am tired I MUST rest immediately. To push myself will only make me really sick which can
    always lead to an out-of-control flare-up. I try to lay in bed for 10 hours a night (no kids, no husband, no problem) and take a 20 minute
    nap in the afternoon. I feel good physically, if I can do these things. I wish you a pain free day!

    Reply
  • June 22, 2013 at 10:26 am
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    Words of wisdom Kelly. We definitely must choose which activities are important enough to us to give it our all and participate in. Knowing full well that afterwards we will pay in pain. I feel like for the past few months I have dropped out of my own life. I stay home and don’t participate in much. I used to be a lot of fun, but quite honestly, pain makes me want to stay home more and more. I get out every day during the week to work, and spend my weekends recovering! But at least I CAN still work. Many RA warriors aren’t so lucky. I have a feeling my working days may be numbered, but for now, I consider myself blessed that I can still do it. Thanks again for reminding us, that we do have choices.

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  • June 22, 2013 at 1:53 pm
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    Bless you, Kelly. Your posts are always spot-on and provide such confirmation of our experience.

    Yesterday, I went to a house party. The first gathering like this since being diagnosed a year ago. I had mixed feelings – sometimes overwhelmed by trying to keep up with conversations (never an issue before) and JOY at being at an event with friends.

    By the time we got home, I couldn’t move. I needed assistance changing to pajamas, walking, and getting to bed. After several hours in bed, I could move a little bit.

    My mind went to – ‘oh, you’re just exaggerating, it’s all in your head, you’re really not that bad, it must have been from feeling uncomfortable at the party’.

    THANK YOU THANK YOU for your post. I can look at my body’s response and see that I have an illness that responds in a certain way. END OF STORY !!!

    The psychological torture we put ourselves through is unnecessary and many medical practitioners who constantly reinforce the message that it is in our heads just need to be ignored !!! We have to work with doctors who ‘get it’ AND we have to be kind and compassionate with ourselves.

    So many aspects of this disease are a mystery – particularly what causes our bodies to react in this way – BUT our stories have so many similarities that the pathophysiology of this disease and how it manifests cannot be ignored. More research needs to be done to understand and cure this disease !!!!

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  • June 22, 2013 at 11:26 pm
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    I was formerly diagnosed by my Rheumy in January but have been in a low grade flare since November. I went from 5 mgs of Prednisone and was doing great until I felt too great and did a week full of gardening and paid the price. I had to go up to 20 mgs with pain meds and was directed by my doc to lay low, listen to my body and realize that the meds just mask what is really still there. He wants me to enjoy gardening and life but understand that I must save my energy too. So it’s pick and choose my ways to spend my energy. When I do garden, I focus on one goal take Advil before, take a rest in between and ice my hands and wrists afterwards. Going grocery shopping is a big chore now so if I do that then that’s it for the day. We are going tent camping next week for four days and it’s a walk in site meaning carry the gear in 100 feet to the campsite. We made the plans before I had the RA ‘attack’ last Thanksgiving. My doctor told me that he can raise up the Pred dose so I will be comfortable and enjoy my trip but since I just got down to 7.5 mgs of Pred. I was reluctant but seriously in my heart I know that I will probably call Monday and get what I need to ‘feel good.’ We have discovered that one of my toes is now turned sideways and is bent. Doc wants me to try Biologics next month which he told me will be a pill form so that must be the new Xeljanz? I need more info on it but the erosion of my toe is really giving me the feeling of not wasting time waiting.

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  • June 23, 2013 at 7:21 am
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    I’ve been trying to start a business, to help other people, the overlooked and underserved, learn about health and wellness. The first step has been to become certified as a personal trainer. After that I can become a trainer for “special” populations. In trying to study for the exam I find I can’t focus, I feel as though I ran a marathon, no energy! I’ve written a few posts on my blog about starting to be discouraged, yesterday was the first day I feel that my goal may not be achievable! Ironically my pain has been relativley mild just the occasion arch of my feet pain, and general achiness of hips.
    The limited energy resources is so difficult to accept!

    Reply
  • June 23, 2013 at 5:31 pm
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    I pay to play regularly. I do stuff with the family and around the house on the weekends and spend the work week wiped out. For a family outing a few weeks ago I pushed myself so far that I ended up in a wheelchair in order to finish the outting. I was at the point where I could no longer walk no matter how much I wanted to, it hurt my pride but it really didn’t matter to me at this point as I could no longer function. In spite of this I will continue to do this as longer as I am physically able to, knowing full well what will happen when I am done.

    Reply
  • June 23, 2013 at 10:43 pm
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    This entry gave me so much relief and understanding of my RA. 6 months ago, before I started Humira, I could not walk around a grocery store for more than 5 minutes without being completely wiped out, in pain in my hips, knees and legs, begging my boyfriend to leave.
    Last week, I woke up feeling “great.” Amazed and happy to do so things I haven’t in a while, I went to work, walked around for hours, and went grocery/ clothes shopping in 3 different stores— something I have never done since being diagnosed.
    However, soon after I arrived home, took my shoes off—the pain returned with a vengeance and I knew exactly why—–I had overdone it; I had overused my legs, taken one too many steps and now I was going to pay with pain.
    I learned that even on good days, moderation and not overdoing it is key; however, I’m sure there will be so many instances where I will “pay for play”— mainly because I find happiness in doing the simple things again – like food shopping- things that another 30 year old like myself might see as a chore every week.

    Reply
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  • June 26, 2013 at 8:11 am
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    Thank you once again, Kelly! Every day is a pay to play, and I hear Rosemary loud and clear on having to spend all of her limited energy on work – the one thing she doesn’t want to to – I’m definitely in that boat with her (but I have 15 years to retirement!). 2 years ago I was so severely disabled by a year-long “super flare”‘ walking with canes (when I could walk), being carried or pushed in a wheelchair when I could not, unable to use my hands, arms, legs or neck. now, while not in remission, I overindulge in”everything I want to do before my body gives out – I ran my first 5k at age 47 last year, I’m riding my horse and I hope to do some more kayaking this summer — purely because FOR THE MOMENT, I can do these things. There is likely to come a time when I’m back in the wheelchair, and I look at this respite as my moment to accomplish these things so I can look back and say “I did [fill in thebblank]. I do pay for these activities, but it is definitely worth the price. Having been completely immobilized in the past, I know I can’t wait to get “better” to live life…I will do what I can now, and when the time comes when I can’t I will know I lived my life to the fullest extent possible.

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    • June 26, 2013 at 8:41 am
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      I agree completely Judy & I’ve advised people to do the most they can while they still can. Our experiences (about how active the disease is) are very different from one another, and what’s even more difficult to understand, they can be very different from ONE’S OWN experiences over time.
      I actually live on that hope, still stuck in the initial flare after 7.5 yrs – I believe it will end someday. I have not sold my tennis racquet or given up the idea I’ll run again someday.

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    • June 26, 2013 at 8:52 am
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      I agree completely & good for you, Judy. In the past, I’ve advised people to do the most they can while they still can.

      Our experiences (about how active the disease is) are very different from one another, and what’s even more difficult to understand, they can be very different from ONE’S OWN experiences over time. I actually live on that hope, still stuck in the initial flare after 7.5 yrs – I believe it will end someday. I have not sold my tennis racquet or given up the idea I’ll run again someday.

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      • June 26, 2013 at 4:56 pm
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        Kelly, You are SO right! In the depths of my flare I never imagine I would ever walk again, let alone get meaningful relief from the intense pain, fevers and fatigue. Although fatigue still has me, it’s a fraction of what It was, and I am grateful for every day I can turn over in bed – let alone get out of it and actually stand up! My prayer for you is that you get, at the very least, a good breathing spell to just “be Kelly” again. I know you were an athlete, and a crazy hard worker and doit yourself kind of woman (as was I) – and knowing this about you is part of what makes your message resonate so powerfully with so many of us – certainly with me! Thank you for all the amazing work and encouragement you give to us all.

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  • July 22, 2013 at 9:24 pm
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    Pay to play how 3 little words can take on different meanings for so many. This past week we had Vacation Bible school. My group was 3 and 4 y/o. We were blessed with 16 precious yet rambunctious kids. My husband stayed strong with me all week along with another friend. They filled my heart with joy which helped being that I went straight there from my RN job. So sadly this weekend has been the payout. Just begging the clock to be close enough to time to not feel bad about taking my sleep cocktail. Doing this just so I could rest. My prayer for us all is that the “payment” required for our playing can be paid in 1or 2 easy installments and not a balloon policy!

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  • September 1, 2013 at 7:21 pm
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    Thanks Kelly for another great blog. Just returned from a 5 day trip to the beach. Rested up before we left and pushed like hell while there to do everything and anything I wanted to do. Took a boat ride on a bumping, slapping fast speed boat just so I could watch the dolphins frolic in the surf. Walked the boardwalk/beach and enjoyed the breeze and salt air. Hit the outlets at Rehobeth on the way home and got all kinds of deals then drove the 4 hour drive back to Hershey, PA. Am now playing the pay for play game, but it was worth every minute to enjoy time with the family doing things I used to do. If I am down for a week now that I am back, so be it. I don’t know how long I will stay out of a wheel chair and tend to go into one kicking and screaming. When the time finally does come, I am still not giving up fun times with my family even if it kills me.

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  • September 1, 2013 at 7:44 pm
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    I just retired after 28 years as a special ed. teacher, 25 in the same building. For about 12 years we’ve had a carnival the last week of school–ring toss, bingo, candy for prizes. The kids have tons of fun. I haven’t participated for several years, mainly because of my RAD. This year I really wanted to do something. My co-teacher and I had a “tattoo booth” with fake tattoos. They didn’t take long, maybe 30 seconds per tattoo, and the carnival went for an hour and a half. I know i tattooed at least 150 kids! I didn’t think this would be hard, but even though I was able to sit throughout, it was a lot of reaching and bending. We finished a 11:00, and by 2:00 I could hardly move. It took me four days to reach the point where I could do anything but sleep and sit! It was one of the reasons I decided to retire–we don’t get to do as much “fun stuff” anymore, and if I can’t even do that…

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  • September 2, 2013 at 11:03 pm
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    Hi Kelly, was just wondering if anyone takes prednisone for bad flares, such as when you play too hard …haha.. I need to take 10 mgs a day for about 3 days and then can go off of it, and it truly helps. I understand it is not a good drug to take, but a need is a need.I am on a bilogic, simponi, which doesn’t always work.. so the need for prednisone is bad. Do you or anyone you know take this as needed. My Rheumy doesn’t understand why I would need it.
    thanks for listening.

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  • January 2, 2017 at 9:04 pm
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    It is close to 4 years since you posted this. I want to tell the story about the 2016 holidays. On Thanksgiving, off Methotrexate, off aspirin therapy (anticoagulant), no biologic, I made the dressing and the cranberry sauce. It took me 3 hours – mostly standing. It tasted great! But the next 4 days my feet were so sore I could hardly walk from the living room to the bathroom!! On Christmas, Himself made a steak and we called it a roast, and Yorkshire Puddings to go with it (not quite there yet, but they get better each time he makes them). On New Year’s Eve, we had all the kids and most of their kids and my FIRST GREAT GRANDCHILD to the house for Brunch. I wiped out trying to declutter, and eventually gave up. My darlin’ son-in-law helped me box stuff up and packed it into my office (er, junk room). It was a wonderful day – the kids did all the cooking and cleaning up. (But I still got really tired.) On New Year’s Day I made Collards (2 hours of standing) and Hoppin’ John, while Himself made the Hog Jowl and rice. Standard traditional Southern New Years Dinner. It’s supposed to bring health and wealth in the new year. This is Jan 2, and I’m wiped out! I figure 3 more days of doing basically nothing will be in my future. I’m back on MTX, so that is helping. YIKES – we do ourselves in, don’t we?!

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