Letting Fumbles Strengthen the Heart

refinishing Dutalier rockerLike most people, I was always proud of what I could juggle and how many balls I could keep in the air at once, while making it look easy. Most of us also know that living with Rheumatoid disease changes that.

One by one, I’ve had to put down things I’d rather have continued. I remember the moment when I could no longer quilt. Or knit. And the last piece of furniture I refinished, my rocker. My shoulders were bad at times, but my hands only ached. With medication and rest breaks, I pushed through it. It’s hard to tell you how glad I was to be able to get that done. Every other thing was set aside so I could accomplish it.

That’s the same way it was with the ACR meeting last fall. Emails, laundry, and other balls just dropped and rolled. More than the (extreme) physical difficulty, I just could not keep other balls in the air. It’s like RA itself takes the place of several balls, reducing my capacity. Or maybe RA just ties one of my arms behind my back so juggling is a bit of a joke. Probably both – RA is such a damn bully.

Sometimes it seems more like dodge ball than juggling. My son’s swollen finger, my several-months-long bladder infection, and countless other things like the avalanche of medical bills are obviously unwelcome balls flying into my circus ring. Then there are the balls that are very WELCOME like opportunities to speak or write about RA, letters I long to answer, friends I want to talk with.

Honestly, last week just adding the flu was enough to make me fumble every single ball. (Hear crickets chirping here on the blog?) But it was Bear’s birthday and I somehow helped Katie Beth to make cake and wrap presents. Thank God for Amazon.com! This week is Tiger’s birthday and we’re doing it all again!

grinch heart grewYes. I miss being able to juggle a dozen balls and wink while doing it. But this is my life right now. It’s infuriating to have a disease that never takes a day off – coming up on 6 years now with no break in flare. Maybe I’ll always grieve the things I can’t do. But I’ll also tell you that the little victories are extremely sweet. Whether laundry folded or a little blog post – or making one of my kids smile – I’ll savor any accomplishment!

Maybe I’ll always feel a little guilty about all of the balls lying around on the floor like deadlines I miss, my House Not-so-beautiful, food that spoils in the fridge because I bought it hoping I could cook it yet couldn’t. However, I will grow in grace and let God teach me more about mercy. No matter how much we think we’ve grown, our hearts can always be expanded.

Postblog: Please watch this video and think about attending G5 in March! You’re invited!

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Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

28 thoughts on “Letting Fumbles Strengthen the Heart

  • February 9, 2012 at 12:06 pm
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    Thank you so much, Kelly, for putting into words the feelings of my heart. I HATE the dropped balls, the lost juggling capacity and the limits. But I will not live in angst. God’s grace saves me daily. Thank you. Thank you. Thank you for not dropping the WARRIOR ball. You make my day!

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  • February 9, 2012 at 12:47 pm
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    I hear ya Kelly- I have way to many balls in the air, and I don’t have children! The balls are falling— my caregiver is sick, and I have a huge craft sale where I am selling my stuff to give us more $ for bills. I have a deadline on that- Saturday. So, all of the other balls.. will have to wait until next week. The garage door that won’t open, the AC that stopped working…the house- don’t go there! I MISS YOU, and soon I hope the balls will either cease to exist or we just won’t care anymore and make one of these huge ball pits to play in? Hang in there– and know, you are not alone… my goal is to get through Saturday, and to avoid getting bronchitis from Tom!
    Kim

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  • February 9, 2012 at 1:02 pm
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    Hi Kelly, I tweeted this earlier, and then reading this it came back into mind.
    “Feeling bad that my biggest acheivement today has been to peel the spuds for dinner, & feeling sadder that I got so excited about it”
    My balls are still in the air too, the unfinished bathroom, still! The jobs I’ve been planning to get finished sorting wise, the one 5th pruned fushcia bed, my plan was 1 a day, I flared after the first days cutting. It goes on of course. Enjoy the birthday bash, my daughter’s is coming up next week and she’s taking 2 friends ice-skating. Oh how I wish I could glide round with them ‘sigh’.

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  • February 9, 2012 at 1:05 pm
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    It’s so hard to let go of the fact that the balls have been dropped and feeling badly or even guilty for it. But if you can get to the point of accepting that that’s okay, I wonder if one of the blessings of RA is that it forces you to choose your “balls” wisely and focus on the things that are truly priorities. Oh, and I’m with Kim — with the dropped balls, make a huge ball pit to play in 🙂

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  • February 9, 2012 at 2:09 pm
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    Your post could not have come at a better time, Kelly. I just had to resign my long-standing position as an evening instructor at my college because the RA fatigue was beginning to become dangerous to my safety when travelling home alone after 10 p.m. It hurt to have to leave that part of my work behind, but at the same time, my daughters rejoiced. Now mommy gets to be home with them every night (after 6 years of teaching evenings) and can relax so she’s not so irritable. I’m just starting to consider the opportunities available now, but I’m certain they will be more wonderful than I can imagine.

    Thank you, my friend, for your bravery and insight!
    Jeanette

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    • February 9, 2012 at 2:12 pm
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      Thank you too Jeanette! What a wonderful silver lining for you.

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  • February 9, 2012 at 3:01 pm
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    RA is something that causes us to learn that we are human BEINGS not human DOINGS! I know all to well about letting those balls drop. But I’ve learned that sometimes our disease is the one ball we have to keep juggling and ask for help with everything. That’s the hardest thing to do at time, asking for help. But, as women, we’re raised to be Superwoman and be able to work, care for family, win SuperMom of the year awards and everything else. But, we cannot always do that when we have RA.

    When I was in the nursing home and doing PT, every little victory, no matter if before being sick that was something that was done unthinking, was celebrated not only by me, but by my PT, the other therapy staff members, the other residents in the room, and any staff and residents who later heard about it. It was as if I had a HUGE team of cheerleaders there. Then of course my family, extended family and friends all cheered me on. What motivation! So it’s good to celebrate even the smallest of accomplishments on those days that if you’ve gotten out of bed and gotten dressed you feel you’ve accomplished a lot!

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    • February 13, 2012 at 8:49 am
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      What an important point – actually several of them. Thank you.

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  • February 9, 2012 at 4:29 pm
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    I think you’ve always gone above and beyond “most people”. your’e a very good juggler! Thank you for keeping to try, I’m always amazed by what you accomplish. <3

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  • February 9, 2012 at 10:19 pm
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    wow….did I need to hear this! I continue to learn and be inspired by all of you. Thank you..Gentle Hugs

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  • February 10, 2012 at 5:24 am
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    Sometimes it’s not so much about the balls I’ve dropped but running as hard as I can with the ones I have left…

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  • February 10, 2012 at 10:18 am
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    May gosh did you say it all??!!! You are amazing with all you accomplish and in the midst of a chronic flare!! Thank you for making us all realize we can be happy with the simple accomplishments, too, and for amazing all of us with your dedication to your family and to us!

    PS Hang in there with your methotrexate and folic acid, Kelly. Remember what many of us have written on your website: Often we’ve flared for a few weeks (which feel like forever) after beginning the methotrexate, and it took most of us 10 weeks of continuous methotrexate for relief to gradually begin!! How many weeks have you been back on methotrexate and folic acid again, Kelly? I’m thinking about three weeks, but I’ve lost track. Feel better ox

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    • February 13, 2012 at 8:24 am
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      I’ve been on methotrexate and folic acid since the summer of 2006 but there was a break for a few months early in 2011. When I entered the clinical trial in the summer of 2011, I had to have been on it for at least 90 days at a dose of 20 mg. My previous dose had been 25mg.

      Beth, thank you for even using the term “chronic flare.” I answer people who are stunned that their flare does not end when others tell them it will improve in days or weeks. While I can help them feel believed, it’s a frustrating thing to explain.

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  • February 10, 2012 at 1:13 pm
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    Juggling the balls in my life has been the basis for many personal victories and countless disappointments, where I just couldn’t complete what I set out to do. I eagerly await your posts Kelly because invariably I have had similar thoughts. I recently read in an older post that you are a homeschooler. Having had the priviledge to teach my three children for 20 years, it warmed my heart to know that though we have never met, we even have that in common.
    My children are now grown and they turned out to be wonderful, smart, self-starting, caring adults despite my dropped balls or maybe because of my dropped balls and I have since become a Special Education Language Arts High School Teacher, MS.Ed.-a victory one that was preceded by an attempt at a master’s program I had to leave due to the monster diseases (RA and others) that would not relent.
    Some days are harder than others for all of us. But we persevere! Kelly, thank you for all you do. I know it sometimes takes mind over matter. Today I am home after a liver biopsy yesterday, (eight years on methotrexate and my liver wasn’t happy, or maybe it’s an autoimmune problem, or maybe just fatty liver at best; I have to wait three weeks to find out, unless it’s bad.) The shoulder and hip I had to lay on for two and a half hours in recovery hurt more than the small opening they made for the needle, but they wanted me to stay home to heal, go figure.

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    • February 13, 2012 at 8:07 am
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      I hope it turns out to not be anything serious, Rosie. I know they cannot seem understand that leaving us in uncomfortable positions for long periods is a problem. There is just little knowledge of RA.

      Two of my kids are graduated now & in college. The boys are 15, 17, and 6 after this week of birthdays. Raising them is the most wonderful & important thing in my life and yes homeschool is a special connection for moms also. 🙂

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  • February 10, 2012 at 3:28 pm
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    “Well, in our country,” said Alice, still panting a little, “you’d generally get to somewhere else — if you run very fast for a long time, as we’ve been doing.”
    “A slow sort of country!” said the Queen. “Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”
    Lewis Carroll, Through the Looking Glass

    We live in a slow country, now. In order to run at all, we have to not only change our attitudes, but the attitudes of those around us. Getting attitudes to change is next to impossible. Not only our own, but those of the people around us – family, friends, co-workers, bosses, etc.

    Balls I have dropped – cooking – I was really proud of my cooking. I could do day-to-day very well, and special occasion cooking was my specialty. Now, I do well to make breakfast most of the time (hard-boiled eggs and toast – I only boil eggs twice a week); make soup or “bare-bones” sandwich (no lettuce or tomato, and usually no pickles) for lunch; and say thank you when Himself sets the dinner plate before me. Housekeeping? I was NEVER a housekeeper, so we scrimp on many things so we can have a housekeeping service once a month – that was a ball I was glad to stop feeling guilty about.

    The things I really regret: giving up woodturning; giving up piano; giving up guitar; giving up singing.

    The things I really, REALLY regret – not being able to do things with my grandchildren. Not being able to go to their games, their gymnastics events, their swimming competitions, their birthday parties. I WILL, however, attend their graduations – even if I have to be rolled in on a gurney. I’m devastated that I cannot be involved more in their lives. 11 (10 boys, 1 girl) that I haven’t been able to play with, to share my knowledge and what wisdom I have accumulated. I love them so much, but I’m not really “in” their lives.

    I pray for each of you, and especially for you, Kelly. That you’ll be able to pick up all the balls you want to again sometime in your life. That there will be a cure – both for this disease, and for all the damage this disease had made to our bodies.

    I love y’all to pieces!

    Elizabeth

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  • February 10, 2012 at 6:30 pm
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    I have been reading your blog since finding out about you in a publication in my ENT office. Your blog today has hit home like so many I have read before. I will soon be 60 years of age and have known about my RA for about 8 years now. My life has changed so much since that time and I am thankful to read on this website in order to know that I am not alone is the things that are happening in my life. There are a few things I have learned (l) I do not have the extreme problems that many of you do. (2) I am most fortunate to have a husband (of over 40 yrs.) that knows my pain and takes care of me. (3) How lucky I am to have a dr. that listens to me, works with me and whom I really feel, looks after me. We don’t have a GREAT patient/dr relationship, but I know he is there for me and does what is best. I wish is that each of you could have this in your life in order to make this awful disease more bearable.

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  • February 12, 2012 at 5:17 pm
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    In the eight years that I have lived with RA, I have learned to not worry about the balls I have dropped. If someone else doesn’t pick them up, I will eventually get them but I’m not going to stress over them. Hang in there Kelly, I think you’re a pretty amazing juggler.

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  • February 12, 2012 at 9:22 pm
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    Dearest Kelly,
    The longer I live in this unrelenting “flare”, the more I realize that the most important things in life are the simplest. Love being the most important. God is His infinite greatness has given us this cross to bear & to you, with which you bear so gracefully & use with divine inspiration to so many of us.
    No matter how many balls we drop every day or how many they continue to add up to, we always add countless abilities to our repertoire through the Holy Spirit within our hearts & from you doing more for RAD than any doctor or RAD-free person out there!
    I thank God & pray for you & everyone suffering from this devastating disease. I also thank God that I’ve been blessed from this disease as well- I am a better person inside for it, however, I’m a quick study so He could’ve given me a different way to learn the lesson 😉
    Blessings & love to all

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    • February 12, 2012 at 10:20 pm
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      I’m ready for a break in my suffering also, regardless of whatever it has taught me – I’m human. And this is a very treasured encouragement, Danice. Thank you.

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  • February 12, 2012 at 9:33 pm
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    I actually do miss my OCD housekeeping! *wink* to Elizabeth 🙂 I miss playing tennis, cooking, writing pages upon pages in my journal, drawing & painting, gardening, walking around a mall for hours, hiking, re-organizing drawers/closets/rooms/whatever on a whim, just walking… But you guys understand all that. I miss my old life a lot of times. There’s a huge pile of dusty balls around here!

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  • February 13, 2012 at 3:12 pm
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    sometimes,I wonder about reincarnation and whether there is such a thing. If so, my lesson this time around is definitely patience, tolerance and forgiveness. Surprisingly enough, primarily with and of myself.

    I am woefully behind and have started considering whether I should learn that it’s a permanent state of being. Guilt is a sign that you’ve done something wrong. If I’m behind on everything because of my disease, not because I’m lollygagging or procrastinated, then I haven’t done anything wrong. Right? Not quite there yet, but I’m working on it.

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    • February 13, 2012 at 5:38 pm
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      What would I say to you my friend if you were here having tea by me on this cool afternoon?
      I’d ask you how you’d counsel another. What would you say to a frustrated young person who could not fulfill the goals she had for herself because of illness? How would you encourage her and give her hope? I believe I can hear you telling her to find ways to do whatever can possibly be done and keep fighting, but I’ll bet you would not allow her to accept a single iota of blame for what remains undone.
      The trick is to have this same compassion for ourselves. You might admire another for being able to accomplish what you have under the same circumstances!
      Of course we are not guilty. And we have both felt like we were anyway.
      May we all remind each other that we are not to blame for illness.

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  • February 13, 2012 at 3:40 pm
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    I’ve waited 12 long years to finally have time to redecorate our bedroom. The balls were always in the air, someone in the family would be sick and needed me, work would be busy, or it was my fault for the delay lack of initiative or the persistance of RA. Thank goodness my husband is quite the DIYer without him the painting once again would have never gotten started. Sometimes despite the fatigue and pain if we just have a small cheering section we get that little bit more encouragement to push ourselves forward on our journey. I at first felt bad that I wasn’t pulling my fair share of the work but then realized that the juggling of RA and its complications are a 24/7 activity. Maybe my job isn’t to paint but to sit back and keep him company and encourage him to finish our project.

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  • February 13, 2012 at 10:11 pm
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    Helps me to see that others struggle with feeling like a failure over everything they can no longer do. Nice to know the guilt is not unique to me. I too am working on letting go of my super woman multi-tasker identity and rebuilding my concept of who I am. Tough to do.

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  • February 13, 2012 at 10:35 pm
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    Thank you, Kelly, for this thought-provoking post. You manage to eloquently convey my worries and I hope that your words reach so far into the blogosphere that those who don’t suffer from this disease would become more aware of RA. We are part of an exclusive (and illusive) “club”. Since being diagnosed, I have uncovered the existence of a hushed underground group. These people have RA and/or other autoimmune diseases and they don’t generally speak of them to outsiders (non-patients/non-affiliates) because they think others couldn’t possibly comprehend a disease that is so complicated yet vague. So thank you from the bottom of my heart for not dropping the ball with your Warrior mission. We are so grateful and appreciative of you! Gentle hugs to you!

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    • February 13, 2012 at 10:42 pm
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      Thank you so much! I’ve gotten email letters or private messages from those who cannot comment publicly just as you describe, even some doctors who get the disease and are quite shocked by how it is on this side of the fence.

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  • May 29, 2012 at 10:31 am
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    I now buy a lot of already prepped vegetables, small thin skinned potatoes that don’t have to be cut or peeled, and frozen vegetables that can be steamed in the microwave. Both my microwave and crockpots get a lot of use both for vegetables and meats. One of our favorites is dump soup or stew. Take leftover meats and vegetables and small potatoes if you like (can also use canned or frozen meats and vegetables), add frozen seasoning mix, and whatever spices you like, canned broth or vegetables if needed, dump in crockpot, and in a few hours you have a delicious meal that is easy enough that a kid or a husband could do it before heading off to school or work. Things like this have really cut down on us having to throw away vegetables. Depending on where you live, Schwan’s Food may be higher or about the same as the grocery store, but they deliver frozen food to your home and will even put it in your freezer for you. The drivers are not allowed to accept tips, so that may make it less expensive than paying for grocery store delivery plus a tip. Kelly, thank you and the other warriors who have given me tips that have made my life easier.

    Reply

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