If I Were Not Living with Rheumatoid Arthritis: 10 Things I’d Do | Rheumatoid Arthritis Warrior

If I Were Not Living with Rheumatoid Arthritis: 10 Things I’d Do

Flowers in the desert at sunset, a rare site.

What if there were a cure for Rheumatoid Arthritis or you had a genuine remission from living with RA?

Like many, this post is inspired by a conversation with another person living with RA – actually, several conversations.  We aren’t dwelling on the negative, just dreaming about what we we’d love to do. I thought sharing it here might provide a hint of realism to those who do not comprehend what we lose while living with Rheumatoid Arthritis.

Some of these are things I would like to do again because I thought they were so wonderful, I did not give them up voluntarily. Others, I’ve never done before –bet you can guess which ones.

10 things I long to do

  1. Get a dog. I could not imagine my life without a dog, but here it is.
  2. Build beautiful gardens. I moved right before RA, leaving mine behind.
  3. Finish my last quilt.
  4. Ride a bicycle.
  5. Go to medical school & become a doctor so healthcare professionals would listen to me tell the truth about living with RA.
  6. Walk in an “arthritis walk,” pointing out how to the press that countless people cannot participate for themselves.
  7. Paint intricate decorations onto hundreds of delicate buttery cookies. Give some of them away as gifts – Hey, they taste too good not to keep some.
  8. Run for an hour on the beach barefoot at sunrise.
  9. Have another baby.

I could not finish my list. It was too hard to choose one thing and leave everything else off the list.

I’m sure your list is unique.  What did I leave out?

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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67 thoughts on “If I Were Not Living with Rheumatoid Arthritis: 10 Things I’d Do

  • January 18, 2010 at 9:00 am
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    I refuse to make a list. For me, it would be limiting myself and though I fully acknowledge that RA limits my life in many ways- I have to hold on hope that if there is something that I desperately want to do- I will find a way.

    Let me take your list and show you how I would think about doing things that I enjoy on your list:

    1- Get a dog. As you know, I have not one but now TWO beloved fur-babies. I have both Harley, a yorkie mix (who is about 21lbs with her “winter weight”) and Auggie, a pekingese mix (maybe 15lbs now that he is out of the shelter and living at home with regular meals and treats). Both are shelter babies. Both are “older dogs”- Harley was 5 when we adopted her, Auggie is about 12-18 months. Both are perfect for my life. They both will adapt their walks to my ability- if I am feeling good- they will walk all day. If I am not feeling so good- a quick walk to do their business is fine with them. Harley is uber-mellow where Auggie is more energetic. If I feel up to playing- Auggie will chase a ball or toy all over the house- if not, he will play fetch with himself until he is tired. A good shelter will know and steer you toward a dog that will fit your lifestyle- and our older dogs tend to be overlooked so the shelters tend to know them better than pups. In fact- if I had a decent sized yard (we live in a townhouse) I would go back and get the gorgeous 4 yo cocker that is at the shelter right now.

    2- Build beautiful gardens: There is NO time limit on this for you! If that is what I wanted, I would start with a small patch at a time- and include the kids. You might not be able to do a whole yard in a season, but one or two or more plants at a time can be doable. It is just knowing where to stop before you over do. And for the little ones- digging in the dirt and then seeing “their plant” grow can be a joy- and it can be something that you share. Imagine-on their wedding day when they are getting ready to move into their home and begin their new lives- you give them a little pot with a cutting from “their plant” to begin their own garden. My mom has dozens of lilies from my grandmother that mean more to her than the entire rest of her gorgeous yard. Plus- that work in progress when you do a little at a time can give you something to work toward in the coming seasons.

    6- Walk in an Arthritis Walk. Every AF Walk (and Breast Cancer walk) I have done has encouraged us to “walk as far as you can.” There is no prize for finishing- it is all about the fund and awareness raising. I have “walked” with people using walkers, people in wheelchairs, people who walked a quarter of a mile, people who finished the whole walk.

    Don’t let RA “steal” things you would love to do from you. Keep your dreams and goals- and find a way to work with your limitations to reach them.

    Reply
    • January 18, 2010 at 10:26 am
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      Julie,
      I agree w/fighting back & never giving up. I take that approach in the post I mention at the end about doing hard projects anyway. Unfortunately, my hands have gotten worse & today I could not do that slipcover in the picture on that post. I have high hopes for the Orencia & a dog is the first thing on my list if I get any better! I really could not be counted on to feed, walk, or groom an animal right now. Caring for my 4 now year old would be impossible if it had not been for my incredible daughters. His socks & shoes alone!

      Reply
  • January 18, 2010 at 10:18 am
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    I would go run in the yard with my grandson and my two little girls…..Oh how I miss that.

    Reply
  • January 18, 2010 at 11:02 am
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    Kelly,
    Your list made me smile until I got to #9 and then I cried. I am debating about baby #3 after just being newly diagnosed. If I were to make a list today, #1 – #10 would all be the same: Have another baby!

    Reply
    • January 18, 2010 at 11:54 am
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      Megan!! Please don’t cry. And don’t be hasty about this either.

      Here’s the whole story about my decision: I had just had my 5th baby when I got full blown RA. That was a big part of the doctors all saying: No way do we support another pregnancy. Also, my RA was very aggressive, reaching every joint in less than 6 months & I haven’t found a medicine which would put the RA into any kind of remission; there has been constant flare for almost 4 years.

      In no way does that mean you have to make the same choice. I’d love to talk more with you about this. You can email me if you like: kelly @ rawarrior .com (with no spaces).

      Reply
    • July 25, 2010 at 2:26 pm
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      Megan I had to reply to this one. I was pregnant with my 2nd child when I was dxn with RA. I coped when he was born, with support of course but I coped because having a family was the most important thing to me. I was advised not to have any more children but 5 years later I decided that my family was not complete and I came off the mtx to try for baby no 3. Due to the meds I’d been on she took a long time to get here (23 mths), and there are 7 years between my son and my youngest daughter. I coped again because as mothers we find ways around things and I was lucky as I now had 2 older children to help out at times & as they were both older didn’t need the constant attention a tiny baby does so I was able to spread myself between them.
      I’m lucky I have a wonderful support system & a close family to lend help when needed but I would say dont let the most important dreams go by. My children are the most important things to me & I was determined that RA was not going to steal that element from us. I now have a wonderful family, 2 girls and a boy who are all very understanding of living with RA, they’re compassionate and helpful young people & my life is complete despite the RA. Good luck Megan. Gilly x

      Reply
    • July 25, 2010 at 2:36 pm
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      1. Take up running to keep fit, I’d run with my daughter.
      2. Do walks for Arthritis & Breast cancer.
      3. Dance the night away.
      4. Go back to my lovely job as a dinner lady, had to give it up just over a year ago.
      5. Clean my house from top to bottom and move furniture around every month!!
      6. Have a huge vegetable garden and cook all home made meals with the things I’d grow.
      7. Go ice-skating & horse riding.
      8. Enjoy pain free sex again.
      9. Take our dog for long, long, long walks.
      10. Shop all day with my best friend without it hurting.

      Reply
  • January 18, 2010 at 11:55 am
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    I won’t make a list but I know there is alot that RA has taken from me, but I have gained alot. I have changed in more ways than I can imagine simply because I have had to change my lifestyle. I would love to have another children, a girl would be life, but I can barely chase after my toddler and my ten year old. 😀 I would definately walk or run in a athritis walk/marathon if I could. I would go back to doing volunteer work. I am envious of healthy people who take their health for granted. If I had a choice between being healhty or being rich, I would choose health.

    Reply
    • January 18, 2010 at 1:11 pm
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      Health over money, absolutely.

      Lana, regarding what we’ve “gained” thru living w/RA, here is what I wrote over the weekend in a Facebook discussion thread on Depression & RA:

      “There are too many losses – you are right. But we also have opportunities to grow due to the requirement that we “adjust” over & over w/RA (or other illness). There are friends we would not have met or perspective we gain through our struggle or character qualities which improve… Lots of silver linings to this EXTREMELY unwelcome change of RA. Sometimes I try not to, but my PollyAnna is always coming out…” I see we are in agreement here.

      Oh no! I forgot volunteer work! So many things I do not even participate in now…

      Reply
  • January 18, 2010 at 1:15 pm
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    I still do a lot of the things I want to do…I am just paying a terrible price for it but the currency is pain, fatigue, and the sideways looks from people who don’t understand that I can’t get up and go like I used to. Part of me curses that I don’t look sick but I am vain enough to be glad about that too. I think for me, just a remission or a cure would be enough. I think back to the way a was just a year ago…I miss multi-tasking, knowing the answers to dumb questions, being able to hang out with my party friends, and most of all the ability to think that I have all the time in the world to do things. By the same token though, it has also lit a fire in me to do some things before it is too late…even though I can’t manage it very long, I am starting my first novel…something that always got put off until this or that stressful phase was over, after I did this or that home improvement project, etc.

    The days when I can’t make any progress whatsoever are the days when I wonder what I must have done in a former life. It makes me even more determined not to give up on this one and to appreciate the little victories I achieve.

    Reply
    • January 19, 2010 at 7:58 am
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      I also miss thinking I’m superwoman like others…
      The novel is exciting! Don’t give up! If your hands get too bad, there is voice recognition for typing. Maybe you’ll get through a whole series of novels before that happens. 😎

      Reply
  • January 18, 2010 at 3:19 pm
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    I have to be honest—I miss the “old” me!! I feel like I am aging at a rapid rate, due to the fact that I “feel” old because of the RA.

    1. I miss doing the renivation I was doing room by room.
    2. I miss playing pool and enjoying a few beers with friends.
    3. I wanted to open a bed and breakfast.
    4. I wanted to travel and visit other countries. (Which waiting for SSDI has put a severe dent in our retirement money, so that is out of the question now.
    5. I miss holding parties.
    6. I miss having a sparkling clean home.
    7. I miss my job!!!!
    8. I would walk in the arthritis walk.
    9. I would cherish the moments I took for granted.
    10. I would never get frustrated at someone walking slowly!!!!

    Reply
  • January 18, 2010 at 6:45 pm
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    This one is a tough one for me. I am just at that point in the illness where I am finding out I can not do certain things, have limitations, have to cancel plans sometimes, need help at times, need to go lay down and rest more. It is sad and hurts to lose parts of yourself to this illness and it is becoming an emotional/mental issue as well as physical. My one year anniversary of being diagnosed is coming up, not that I will be celebrating, but it is a day I will never forget. It was a horrible time for many reasons. There is already a difference in just one year, I seemed to have changed in such a short time.

    I was recently asked to do a charity walk, the old me would have done it in a second, the new me couldn’t. I helped in a food drive once and my hands were so inflammed and hurt afterward, I now know I can’t help with that again. Saturday night I had to cancel on dinner plans because I was dealing with some side effects of increasing my MTX. I try to be positive. It’s good days and bad days, heck good hours and bad hours, and a lot of adjusting to living with a chronic illness. So I have to learn to accept that I now have limitations and just keep hope that it will all be ok. I guess I would just like to do the things I always did and maybe, since I would know what it was like to have RA, I would do even more than I originally did without the RA.

    Reply
  • January 18, 2010 at 8:18 pm
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    I was lucky enough to have that remission that we all long for. It lasted roughly eight years, but it came on so slowly that I was in the middle of it before I realized what had happened, and that I no longer needed to plan for possible flares.

    Yes — there were all kinds of things that I did during that time that I couldn’t have done when the RA was severe and active, and that I can no longer do now, since the RA is back. I got to hike and camp in the wilderness, high in the mountains, carrying a backback several times. As a newspaper reporter, I covered wildfires and kayak rodeos, just to name a couple of the more … strenuous … stories. I went on a whitewater raft ride. But mostly I just lived normally, day to day, without pain. I worked incredibly long hours. I gardened. I went fishing. I raised my daughter and step-daughte, and I took care of my husband and my home. All of those things are precious memories for me now. I’m glad and very grateful that I had that extended reprieve from pain.

    But truth be told, I did a lot WITH RA, too. I’m quite a lot older now and not in the best shape (that means I’m no athlete!), but there is a lot I still CAN do. I could be wrong here, but I don’t really like the idea of making lists of things I could do “if only.” Instead, I’d rather just DO all I that reasonably can — and then come up with more. Life is so rich, even with RA. Sometimes we just have to go around the obstacles it throws up in front of us rather than over them.

    Reply
  • January 18, 2010 at 11:11 pm
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    Today is a hard day… I am in so much pain, the tears are rolling off my face and I am not ashamed to admit it, but I have a list… and it comes from 5 years of looking for meds,answers and prayers….

    1. Thank you Father for allowing me to live in a free country where I have access to meds, to people who can blog and give me some answers in small measures.

    2 Thank you for finding a way to make me humble, where I see others who can not move or walk, I still find I have my small steps.

    3 I find joy when I see kids run across my lawn playing games, or the smell of fresh cut grass on a summer day.

    4 I am so grateful for the LIFE, the breaths and the days I have been given, Thank you Father for putting me where I am, I can shoulder what you give – for there is a place, a time and a space where I can say I believe in all that is beautiful and it helps me put aside my pain just that much more.

    5 Thank you for the good days, they make up for all the bad ones, life is sweet

    Reply
    • January 19, 2010 at 8:00 am
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      I’m sorry it was such a hard day. Thank you for the beautiful prayer. :rainbow:

      Reply
      • September 6, 2010 at 9:47 pm
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        Viesta, thank you for the reminders. Perfect. You have your eyes fixed where they need to be. God bless you.

        Reply
  • January 18, 2010 at 11:19 pm
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    This site has brought so much pleasure to me, I was diagnosed at the age of 32, I am now 54. My disease is not my friend but a needed apart in my life, I’ve had it so long now I couldn’t imagine not… besides the deformity would always remind me. It is a slow change of life, the pain is sudden but the change took a while for me to see, I pushed on for several years when I should have stopped. I feel as a chosen member of this special club called RA, I stand proud and firm on who I am and what I want, sick or otherwise. Its not me who has the problem its others who don’t know or understand… I’m just a woman with a disease:

    1. I’m a grandmother and I would run in the yard barefoot with my grandchildren. I would volunteer at their school.

    2. I am a daughter, I would care for my 93 year old mother and stay with her longer than I can now. I would rub my moms tired feet and take her places I know she really enjoys.

    3. I am a wife, I would buy a sexy black dress matched with a pair of sexy high heels…I would arrange the most romantic weekend where we would exert our self in physical interest and go home exhausted from the trip. We would slow dance for hours under the full moon, on the grass.

    4. I am a mother, I would take my sons invitations to stay longer when visiting them, I would be their ‘MOM” again.

    5. I am a professional, I would continue with my career and expect damn good pay.

    6. I am a christian, I would go to church more often and participate in actives, physically volunteering.

    7. I am a dancer, I would dance for hours, too all music and I would encourage other to do the same.

    8. I’m a fighter, I would go out in the streets and push for education, push legislation for medical research (lobby) and enlighten people who “think they know” into the Know. I would buy a pair of bright red pumps and walk up the capitol steps.

    9. I live in Cocoa Beach, Fla, I would take a walk barefoot on the beach every morning and again in the evening, I would fly a kite, throw a Frisbee or even jump a wave.

    10. I too would never take another day in my life for granted.

    That is what I would do.if.. but sitting here I realize its all really in how we look at it.

    I hope I can make life long friends on this site, I believe it would an answer to a prayer. God Bless

    Reply
    • January 19, 2010 at 8:06 am
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      Beautiful list, Alice.
      Cannot play Frisbee, but maybe I’ll meet you on that beach someday for a short walk. It’s not too far of a drive from here.

      Reply
  • January 19, 2010 at 1:41 pm
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    Here is my list:

    1. I’d wash my hair more than once a week.
    2. get going and out of the house before noon.
    3. be a reliable date/friend and not cancel plans because I hurt so much.
    4. cook and bake like I used to.
    5. take my old hobbies up again, scrapbook, photography, mixed media art
    6. mail christmas cards again
    7. jog, play tennis, go to the gym, ski, hike
    8, lose the prednisone weight I put on
    9. have back the love life my husband and I used to enjoy instead of being too tired
    10. never complain again about an ache or pain

    the list could go on and on.

    Reply
  • January 21, 2010 at 2:54 am
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    oh, reading your post and all the comments makes me cry too, there’s so much hope and sorrow interlaced. I remember when I got the diagnosis I felt a weird sense of relief, at least then I could know what was going on with my body, and then the horror as the disease took hold and took over every aspect of my life. Like you Kelly I had every joint attacked in 6 months. I was 20 years old.

    My whole adult life has been about surviving the disease and dealing with chronic pain, after I broke my back in a traffic accident two years after my RA onset, I was “signed out” for life. Nobody expected anything from me anymore. I can hardly imagine what my life would have looked like if those things hadn’t happened… but I’m willing to try..

    1: I would dance ballet, as I did before the disease set in
    2: I would go hiking in the mountains with my friends
    3: I would eat whatever I wanted without guilt or fear of making the disease worse
    4: I would never take another pill of cellpoisoning or cortisone
    5: I would volunteer at my local Red Cross organization
    6: I would lift my niece and twirl her in the air
    7: I would take up horsebackriding again
    8: I would travel someplace new every year
    9: I would go to music concerts and be able to stand up and enjoy the show
    10: I would help others, not always be the one who has to be helped

    This feels rather melancholic :´(

    Reply
    • January 21, 2010 at 9:48 am
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      Hi Anna,
      Here’s to hoping you get to do at least a couple of them and that you get whatever support is needed to make it possible!

      Reply
  • January 21, 2010 at 7:05 am
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    1. I would go work as nurse in saudi enjoyin the challenges of a different culture
    2. would do aide work for agency like the red cross
    3. would be fabulous aunty instead of mediocre of the moment
    4.would have social life…havin energy to enjoy exhibitions and live music, and fabulous conversations without being confused or so tired could drop….
    5. would volunteer at womens refuge and work with children suffering from abuse
    6. would complete my masters
    7. would learn maori
    8. would spring out of bed and be the energized, forward thinking, compassionate, generous person that I was
    9. would be able to work as nurse…without beeing too sore, too stiff, too tired or too confused that would put my patients at risk!!!!
    10. would probably take life for granted

    thanks….this was really helpful….i still believe that can do some of these things….just takes me longer!!! who knows might finally get on right medication and at least be able to go out and socialise!!!

    Reply
    • January 21, 2010 at 9:49 am
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      I think you are right. Some things we might still do – only not the way we expected. Slowly. And with help.

      Reply
  • April 23, 2010 at 5:45 pm
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    1o things I would do if I didn’t have RA;
    1. I would wrestle in the floor with my kids again.
    2. Wear my wedding rings again.
    3. Sit at my BFFs grave and talk with him.
    4. Decorate my sisters grave more.
    5. Go back to nursing.
    6. Lay on the beach, not sit in a chair.
    7. Run
    8. Play softball again.
    9. Shop with no wheelchair.
    10.Go on more car rides.

    Reply
  • May 4, 2010 at 4:39 am
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    I’d ski again, and go for long rides on my mountain bike (I can only do short ridges on the flats).

    I’d spend all day long at the mall, walking everywhere without getting exhausted.

    I’d run on the treadmill again at the gym.

    I’d stop aching everyday.

    Reply
    • May 4, 2010 at 9:20 pm
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      Jamilla, I feel like I know you much better after this post. You are such a fighter; I had not thought of you as unable to do those things. Here’s hoping that you will again soon. :heart:

      Reply
  • May 4, 2010 at 7:44 am
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    Iwould join a mixed bowling leauge, this is how i met my wife of 35 years, miss the fun and competition

    Reply
    • May 4, 2010 at 9:23 pm
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      That sounds fun. A bowling ball may be too heavy. Maybe the 2 of you can find another thing? Can you do the Wii bowling? I can’t but I heard it’s much easier on hands/ wrists.

      Reply
  • July 25, 2010 at 11:49 am
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    Kelly the list is endless
    1.walk barefoot in the sand at the beach.
    2 walk barefoot in the house.
    3.grow my hair long again.
    4. grow my nails long again.
    5.ride a bike.
    6.go on more vacations.
    7.travel in a motorhome
    8. go camping
    9. enjoy sex again
    10.exercise with out pain enjoy the gym workouts because i wanna b there ,not because of PT

    Reply
    • July 25, 2010 at 12:45 pm
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      Roxie! I ♥ you & your list. Good luck doing as much as possible!

      Reply
  • July 25, 2010 at 12:19 pm
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    Where do I start? Hmmm,dare to say, I have forgotten what it is to not live with the limitations. I would have a dog, to walk and be responsible for the care it takes. Garden, down on hands and knees, digging like mad. Planning a driving trip to New Mexico and making it there in one piece. Joining the gymn and working out, no more physical therapy appointments filling my week. Despite what could of been, I am determined to do what I can now to live one day at a time. Feeling blessed for family and friends.

    Reply
    • July 25, 2010 at 12:47 pm
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      Maria, I know I’m blessed too & I do the MOST I can every day. But reading your comment made me cry. Is it because I want the same things?

      Reply
  • July 25, 2010 at 2:01 pm
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    10 things I long to do:
    1. Shop all day long.
    2. go out partying all night long
    3. drink alcohol again
    4. roller skating
    5. clean my house in one day
    6. play with my kids outside
    7. host a party at my home
    8. cook a huge meal for lots of people with out getting tired
    9. run in a marathon
    10. have a message without it hurting

    Reply
  • July 25, 2010 at 2:04 pm
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    I know my list may sound superficial, but I could put a lot of really meaningful things but then my computer would short out from all the tears. There is a lot more I would do!

    Reply
    • July 25, 2010 at 2:18 pm
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      They sound meaningful enough to me Susan. Maybe they don’t mean very much to people who can do them whenever they want, but when you can’t, it’s different.

      Reply
  • July 25, 2010 at 3:53 pm
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    10 Things I would DO if I did not have RA

    1. I would have had a family
    2. Be a great musician
    3. Be a great chef
    4. Travel the world because I’d have money because I’d never have to worry about not finding a job!
    5. Paint, draw, do ceramics. Create beautiful works of art, not art that looks like “kids” art.
    6. Handstands and cartwheels
    7. Yoga and Pilates to the max
    8. Donate time in a soup kitchen stirring big pots of food!
    9. Ride horses on the weekends
    10. Find a husband who loves to sail and travel around the world on the water.

    Be Love,
    Denise

    Reply
    • July 25, 2010 at 4:44 pm
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      Denise, That’s a big list. I hope you can someday do some things that are at least a part of some of them – I’m sure you’ve thought of that already. :rainbow:

      Reply
  • July 25, 2010 at 6:03 pm
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    I would wear my wedding rings again.

    Reply
  • July 26, 2010 at 11:03 pm
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    I find it very difficult to complain. There are many people I go to church with right now who are suffering through cancer, etc. I AM SO BLESSED. I don’t look at it as complaining, but dreams that one day may come true.
    10 things I would do
    1. Have a second child
    2. Run, Run, Run, Run, Run, I’d be another Forrest Gump
    3. Go somewhere or do some activity every weekend until I was breathless
    4. Speaking of breathless….have sex, alot.
    5. Buy skinny clothes again, not have to worry about seeing someone and them wondering why I look the way I do. Thanks predisone.
    6. Play with my daughter more.
    7. Clean my house, my car, my yard, clean everything in one day,
    8. Make plans without wondering if I will really get to go
    9. Go somewhere alone without fear of being hurt.
    10. Play with my dog again.

    Reply
    • July 27, 2010 at 9:26 am
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      Teresa,

      I want to ask you about number 9. I’ve only heard a few people mention this – maybe because it’s so embarassing. It’s something that has happened to me from the beginning – is it because I jsut cant get out of their way as fast as I look like I should?

      Reply
      • July 27, 2010 at 8:12 pm
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        That is one thing. But when I am in a parking lot or store I see people watching how slow I move or if I struggle to move. I know there are people out there who look for handicapped or elderly persons to rob, kidnap, etc. etc. So I don’t like going by myself.

        Reply
  • August 16, 2010 at 2:34 pm
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    I’m happy to say that this spring I DID participate in an “arthritis walk”. There was another woman with Ra there who’s overcome it and runs now…not me. There was a 1km walk and a 5km walk. I did the 1km with my 3 year old and my father…my 3 year old had energy after walking the whole thing by herself. I, on the other hand, did not. But I was proud I did it!

    If I didn’t have RA I would ride a horse again and dance 5 hours/day 3x/week again! I’m hoping to join a dance class in September but I have a feeling it’s a bad idea!

    Planning another baby but I worry about the backlash from my RA after the birth and the affect of the meds on the baby (although I’m working closely with my rheumy and fertility doc to pick the right ones).

    I paint and discovered recently that I can’t do it as much anymore. I thought I’d be fine, just a bit achy after spending 10 hours in one weekend painting a mural for my daughter…two days later I couldn’t use my hand and I was stuck in bed! I would sketch more too…for hours!

    If I didn’t have RA, I would go back to Disney and walk the parks without needing a wheelchair. I can walk, but not an amusement park or even part of one!

    Mostly, if I didn’t have RA I would wear my gorgeous collection of heels every day! I would wear them until they were all worn out!!!

    Reply
    • August 16, 2010 at 7:04 pm
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      Hi Laura, good for you for trying so hard & finishing with your daughter & your dad! I’d love to run or dance too.

      By the way: How did that other woman “overcome” RA? I’d like to have her secret. 😉 maybe she had a remission?

      Reply
  • September 6, 2010 at 9:32 pm
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    1. Surf
    2. Continue my hiking passion with the goal of Mt Whitney.
    3. Walk long distances.
    4. Repaint my house, inside and out.
    5. Ballroom dancing
    6. Aerobics class
    7. Ride horses
    8. Bead and paint ceramics, do Stampin’Up.
    9. Clean my house in one day…(good idea, Teresa)
    10. Go on Missions trips to India and Africa.

    I do have a dog, though. She only weighs 5 pounds and is easy to manage. I couldn’t live without a dog. Her photo is my profile picture. I gave up Dobermans for Chihuahuas only to find they have a lot in common. They both think they are lap dogs.

    Someday I hope to have a restored body and do all these things.

    Reply
  • September 26, 2010 at 3:24 pm
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    Hi all! Obviously I am replying very late to this post….I’ve only recently found your blog and today, as I sit with painful knee iced and elevated, I am looking over the older posts.

    This is such a bittersweet topic, what would we do if able bodied? On the one hand it’s wonderful to dream but on the other, it hurts me to know so many of us are denied the simple pleasures of simply running or wrestling with our kids.
    On Facebook, and on your blog, I am relieved to find so many like minded folks—-folks who are smart and have desires and dreams but are limited by this dreadful invisible and insidious disease.

    However I still feel so alone in this: I was dx’d at age 3 with JRA and I am now 43. Yep, I’ve been fighting moderate to severe RA for FORTY years. And I mention this, sometimes often, not to wave a banner of martyrdom, but because it makes my life so different from even other RA warriors. I wonder where all the other JRA patients are now that we’re grown up? I rarely see anyone my age on support sites who have been fighting as long as me, but surely they’re out there?

    Reading over everyone’s lists, I was really struck by how many of you said you wanted to do something “again,” and I am reminded how different it is to grow up with this enemy than it is to meet it in mid life. I’ve always said I feel much, much worse for all of you who got RA in adulthood. I try to imagine having activities and interests “taken away” from you and watching your life change before your eyes; in this sense, I am blessed to have had RA all my life….I know nothing else. When I was young and the kids were playing kickball or other sports,for example, I discovered books and became an avid reader. I was able to build my life around the disease rather than having to accomodate the disease at some point later.

    Now, having said that, it also sucks to have always had RA because everything on my list has to include the phrase “for the first time.” :-/ And number one would be to give birth. Closely following is being able to roughhouse with my (adopted) son who has never known a mommy without “boo-boos.”

    I would have also loved to pursue a career without basing it strictly on my physical limits/abilities. Related to this, I would be financially self sustaining. I would have played a sport or cheerleading in school. I would love to finally wear a pair of sexy, strappy heels that are more than 1.5 inches high. I would go hang gliding. I would learn to dance or better yet, to figure skate!

    One thing I have gained from having RA by my side (and in my hands, knees, feet, etc, ha ha ha!) is a non-judgemental attitude and more patient compassion for others. I also have a healthy sense of humor and an overall happy disposition, due in no small part to the humility a lifelong disease brings. I am strong, emotionally, even on my worst RA days because chances are, no matter what the day brings to my body, I’ve probably been there and done that. I know we all have crosses to bear, some just feel much heavier some days than others.

    I appreciate having the blogs and online communities that are available to us nowadays! I think RA warriors are some of the strongest, most supportive people ever!

    Reply
    • September 27, 2010 at 10:50 am
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      Hi Donna. Thank you very much for sharing your story. Yes, I’ve met quite a few of our readers who has had JRA that long. It does not affect everyone the same. Some as they used to say “grow out of it” and it is less disabling. Others progress and it becomes more like RA. Whether childhood disease or adult onset, it can be mild or severe. Of course most are in between…
      Those of us who lived a more normal life for a while can always learn from those like you who “know nothing else.” I have a friend who lives nearby like that. I miss my cooking; I was an excellent cook & I don’t get to eat like that anymore. She told me, “I’ve never cooked.” Hmm. As long as we both listen to each other, we can keep learning from each other and be also better able to educate the world about RA.

      Reply
  • December 1, 2010 at 12:11 pm
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    I’m also ‘a little late’ replying on this one but there’s definitely so many things I’d do if I didn’t have JRA.
    I’m only 20 and was in remission for 4 years, from 15 to 19, which makes it even more difficult for me to grasp my *new* reality of living with JRA/RA once again.
    1. Finish my undergraduate degree on time. Oh, how much I long to graduate on time.
    2. Party. This one seems a little selfish but it’s something I long to do. I was legal drinking age here for almost a year before my JRA returned and I miss just having the option. My rheumy does allow me to drink for *very* special occasions with real moderation but I’d love to be able to go out to the bar until 2am, dancing with friends.
    3. Have babies. I’m too young right now, that’s a given but I’m very aware of the very real possibility that babies may not be possible for a very long time, if at all. All I’ve wanted ever is to be a mommy!
    4. Travel.
    5. Gillian’s #8.
    6. Go to all my lectures. I honestly miss sitting in class all day, taking notes and learning. I make it to about 50% of my classes and it’s disappointing.
    7. Sleep for 8 hours and wake up feeling rested and ready to take on the day.
    8. Skate. I’d skate everyday. Or walk. Or run. Or go to the gym. Right now, I can’t do any of that.
    9. Play on the floor with the baby.
    10. Lay with my boyfriend and not have to move every five minutes.. and not make have to upset him when I get hurt when he gently moves.
    It’s hardest to have these things robbed from you without mercy. I’d love to skip back in time, just for a day. I’d do so much.

    Reply
  • January 25, 2011 at 3:06 pm
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    Okay, you guys got to me. I know I’m a late commenter, but I only recently realized all I’ve lost. If I were to have the RA taken away I would:
    1. Buy a new, custom made pair of ice skates and rejoin the skating club I lived for.
    2. Audition for the next community theater show I thought I could do….and get the second lead(usually the most fun part) and sing and dance again.
    3. Go ballroom dancing every weekend…and maybe during the week.
    4. Get a big energetic Golden Retriever and walk, run and romp with her.
    5. Fall in love again.
    6. Have overflowing compassion for all who are ill with anything…and not be so self-serving/obsessed all the time.
    7. Travel, sight see, hike, ski, exercise every day.
    8. Love my life with an appreciation I never had before.
    9. Volunteer and be able to follow through.
    10. Substitute teach….I miss the little buggers!!
    11. Thoroughly clean my house and move the furniture around.
    12. Then drop into a clean, puffy bed and sleep for a straight 8 hours again.
    13. Drive across country to see my kids in my new Beetle with the heated seats. Or even take a plane and be able to traverse the airport to do so.
    I guess I could go on and on, but I’m tearing up too much to think any more.
    I find it just so awful that we all have had to either not know these things or had to give them up, perhaps even humiliating ourselves in the process.
    I’m 67 acting as if I’m 87….and I absolutely hate it!!
    Thanks to you all for providing a safe place for me to vent and cry.
    Judy

    Reply
    • January 25, 2011 at 9:41 pm
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      Thanks Judy. I love your list, especially number 6 and 11.

      Reply
  • February 26, 2011 at 3:38 am
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    This was beautiful thank you 🙂 God bless

    Reply
  • March 12, 2011 at 5:01 pm
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    I don’t have a long list, because I have made some good progress with meds, but I would love to take long walks with my husband again, and wear pretty shoes – never mind killer heels – just the ones with little heels would be exciting. (How long do you keep the shoes in the closet before you accept that you’ll probably never wear them again?) I would also love to be able to clean the house from top to bottom, and keep up with our very big yard – the weeds are taking over everything that isn’t lawn (hubby takes care of the grass.)

    I am thankful that I am back to doing most of my pre-onset work – for church and homeschooling our teen-aged daughter. I do sometimes miss meetings for church responsibilities if I tire myself out too many days in a row. Husband and daughter do most of the cleaning that gets done and the cooking. I’ve survived grocery shopping again a couple of times in the last few weeks. A bonus: treatments have really helped my vocal chords, which had been easily tired for some years – so I’m singing lots more!

    Reply
  • July 21, 2011 at 7:25 am
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    Im feeling really low today so i know this will make me cry, my list is endless, some big things, some small……
    1….have my grand daughter overnight more often, shes 10 months old and i struggle to put her to bed, bath her, change her or just pick her up.
    2….walk the dogs with my husband. we have 2 rescue dogs, a boxer and a doberman, they are walked every day but i cant go with them.
    3….walk barefoot in the sand, nice romantic walk instead of a painful one.
    4….i want to see the lost city of the incas, macchu piccu and it hurts to think i will never do it.
    5….clean my house, clean windows, change beds, mop the floors.
    6….go to a concert and dance all the way through and then drive home.
    7….sleep all night!!!!
    8….wear high heels, or anything thats not a flip flop.
    9….sit on the floor at my cousins grave, and talk to her for hours.
    10….work overseas in a charity, donkey sanctuary maybe, or any animal rescue.
    There are so many more but my brain is fuzzy from lack of sleep at the moment.
    xx tina

    Reply
  • September 7, 2011 at 11:08 am
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    I’d only have one on my list. I want a baby. Grown in my own healthy body, If even I was just only allowed 9 months. Just enough time to grow one. I’d suffer through everything else.

    Reply
  • September 9, 2011 at 10:25 am
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    Push my kids on the swings until THEY get tired.

    It seems like a little thing, but explaining to them each time we’re at the playground that “Mommy’s hands have boo-boos” makes me more sad than anything else right now.

    Reply
  • January 26, 2012 at 2:29 pm
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    Thanks Kelly ..for all of your support and encouragements for all who suffer with RA ! This post was very easy for me to comment on because I am always dreaming ( NOT dwelling ) about all I would do if I could just be pain free and have energy again ..I have never stopped asking God to heal me and give me an energetic life again ..but for His reasons He hasn’t healed me yet and I accept it ..but I will always have hope that if He decides to He can heal me completely ..so I dream about it because in Him I have hope !
    These are the top 10 things I would do :
    1. THANK GOD and Praise Him for the miracle ! I already do this anyways ..even though I suffer in pain..just because of what His love has done to save us all ..and because of how much He has taught me and blessed me through having RA ..I sure have learned about having compassion on the old -the lonely – the weak and those who live with pain or suffering! And I’ve learned to be happy with the tiniest of things God has blessed us with here on earth !
    2. I would CLEAN CLEAN CLEAN and ORGANIZE !!!! Every single thing in my whole home !!! And love every minute of it !
    3. I would be so much more involved in my church ..I would volunteer for everything I could and join a bunch of Bible studies !! I would definitely become a youth leader !
    4. I would start my own home Bible study and go on a missions trip !
    5. I would do so much more for my Cottage Decor business !!
    6. I would exercise every single day and ride my bike again !
    7. I would also try to start up a support group for people with RA and be a better advocate and volunteer at more events !
    8. I would remodel a few rooms in my house ..by myself !
    9. I would get 2 new Sheltie puppies !
    10. I would be a better wife and mother by making my family breakfast before they go to work..and make them nice lunches to bring to work ..and beautiful Gormet’ dinners for when they come home ! I would massage my husbands back when I see him stressed out..and I would go back to having game nights again with my family !And last something I miss so much ..I would entertain and have people over for dinners in my home again !

    Oh how I dream about all of this ..and cry ..and pray so hard .. but very important one thing I do keep in perspective that this would not make me more complete ..or joyful or a better person ..NO I learned all of that through suffering and knowing Christ Jesus !
    God Bless you Kelly <3 and all RA peeps !

    Reply
  • February 17, 2012 at 5:24 am
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    I would….no ….I will….
    Be more active and playful with my beautiful grandaughter
    Be here and now instead of dwelling on the past
    Never take walking for granted again
    Complain less about the pain
    Take that trip instead of just believing I can’t go anymore
    Write more
    Notice the blessings

    Reply
  • February 19, 2012 at 8:33 am
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    With or without RA I am going to get my motorcycle license and my husband is building me a chopper that is an automatic that requires no shifting ( no clutch).
    It will be easy for me to ride even on my worse days.
    I am determined..lolol

    Reply
  • April 2, 2012 at 5:57 am
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    I am going to run a marathon!!! Finally am back to doing well after med changes and 2 ankle surgeries (fell down had to have ligaments reconstructed) it has been a rough year and now that I am doing better I am going to kick RA’s butt.

    Reply
  • January 19, 2013 at 9:56 pm
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    1. sleep all night 2. sit on the floor and play with my grandkids 3. run on the beach 4. sit in my beach chair and watch the sunset and be able to get back up.5. ride bikes with my husband 6. play hide and seek for hours with my grandkids 7.get dressed each day without help or tears 8.pick up my grandkids and squeeze them tight. 9 simply do more 10. be happy again

    Reply
  • July 19, 2015 at 8:12 pm
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    Oh yes, how I long to be able to handquilt again!!! And run, wow!! I would love to be able to work in my garden all day long. I would love to go out for happy hour after work because I’m not exhausted. I think we forget the things we can’t do, until we see someone else doing it. I try not to dwell on it, but oh that quilt…..

    Reply
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