Holidays with Rheumatoid Arthritis Can Be a Grinch | Rheumatoid Arthritis Warrior

Holidays with Rheumatoid Arthritis Can Be a Grinch

holidays with rheumatoid arthritis

Holidays with Rheumatoid Arthritis can be bittersweet

No, I’m not shopping today. If you’ve read the blog a little, you know why. I’m safe at home because Rheumatoid Arthritis has put an end to my Black Friday shopping. Holidays with Rheumatoid Arthritis are different than they were when my aunt gave me that sweet little sign in the picture.

No one loves the Christmas season more than I.  There are year-round signs of Christmas in my house like a tiny nativity set, a shelf of Christmas books I no longer put away each year, and my Christmas cell phone ringtones.

Everyone who cares about me knows I love God, giving, snow, singing, decorating, baking, visiting…

Look at what my aunt wrote on the back: “Stucco”!

back of Martha signI really love to celebrate. I love to make every day into a party.  I have done plenty of dinner parties, spontaneous picnics, and tea parties.  So, holidays have always been over the top.

Anyway, that was all once upon another time. As one friend of mine says, “Add that to the list of things RA stole.” RA is the Grinch who stole my party-throwing days and I’ve accepted that.

But holidays are different. I want to keep as many traditions as I can. It is frustrating how much I can’t do. It’s frustrating all the things I want to do for others that I had to give up.  I used to bake treats and drive around delivering them the week before Christmas. Everything is different now.

I’ve honestly been dreading this Christmas season because of all of the things I won’t do this year because of RA

New ways to express the Christmas spirit during holidays with Rheumatoid Arthritis

Of course I know Christmas is not about me or what I can do to celebrate. And like I’ve always told my kids: Christmas always comes; it does not depend upon us. This is just another new challenge which comes during holidays with Rheumatoid Arthritis: waging war against the Grinch.

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Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 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 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 fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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31 thoughts on “Holidays with Rheumatoid Arthritis Can Be a Grinch

  • November 27, 2009 at 5:39 pm
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    Thanks Kelly! I enjoyed reading this, I came across it whilst researching RA which I’ve just been diagnosed with, it’s encouraging to hear of someone who’s clearly persevering with it I have a young son too who keeps me upbeat at this time of year.

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  • November 27, 2009 at 7:52 pm
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    Dear RA Warrior, I’m always looking for new information, including people’s stories and experiences. They are such useful learning tools! This time of year has always been extra special for my family, but since my RA diagnosis, the lifestyle changes I’ve had to make are really put to the test! It’s hard for my children to understand that Mom doesn’t have the energy or feel well, but my son, (almost 8) understands more than his sister, (5 year old). We are constantly learning and making changes as a family. I try to put a positive spin on it by telling them how boring things would be if we could predict each day. (Oh how it would be nice, just once in awhile though)! =/ As you mentioned, this time of year is a special time for baked goods and getting together with friends. Well, that doesn’t happen as much as they use to, however I’ve learned to do special treats throughout the year. Things that don’t have to be handmade. My friends seem to appreciate it just as much. Merry Christmas to you and thank you again for sharing a piece of your ideas with me and the RA community!
    Colleen

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    • November 29, 2009 at 6:30 am
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      Colleen,
      Thank you for taking the time to write that. I love your positive suggestions. Merry Christmas to you too.

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  • November 27, 2009 at 11:24 pm
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    Happy Thanksgiving Kelly. Ain’t it a bummer that RA keeps us from doing all the things we used to do? I pray for God’s grace and unfailing love as you head into Christmas. Do you ever get snow in Florida?
    Andrew

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    • November 29, 2009 at 6:33 am
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      No snow. Every few years, we get a freeze which kills the oranges & flowers. But that’s about it… 😎

      I really miss snow. Most people here go north to see “fall color” at least once in a while; I don’t know which one I miss more – snow or fall leaves?

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  • November 29, 2009 at 1:29 am
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    If you become Jewish you don’t have to put up a Christmas tree and all those decorations 😉 lol. But RA and AS is the Grinch the stole a piece of EVERY day which is more difficult to face at the holidays.

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    • November 29, 2009 at 6:27 am
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      Yes, that is said by someone who gets it. I’m grieving once again the loss of being able to express myself by doing the things that are meaningful. I want to do make gifts and decorate, etc. I want to bless those I love. It’s aggravating to lose abilities all year long (as you said: “a piece of everyday”), but now it’s a particularly bitter pill.

      Reply
  • November 27, 2010 at 10:17 am
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    I know what you mean. Ive been battling this grinch for 25+ years and Im only 34 yrs old. its hard for others to realize it really does just tap everything you have. My family does chrsitmas huge and its my favorite time of year and holiday….but I do not have the energy to even keep up with the fun lettalone create the fun.

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  • November 27, 2010 at 10:25 am
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    I understand all the pain also, and the feeling like we are losing things we love, however, I also think that traditions can be changed and mean just as much! I didn’t put up a “big” xmas tree, but a 3 ft fiber optic tree (no lights, yeah) and bought already hooked ornaments. I give pictures to my friends with us all in them for their presents, no necessarily homemade, but good memories. 2010 has been a rough year, a 24 year marriage almost ended, my mother died, and i was (for the first time ever) in the hospital for 16 days. I am now struggling with getting back to work as a paramedic and have to lift 130# and i am afraid it might not happen, and being a paramedic is what partly defines me, however, I will adapt, and have a new motto of MOVE FORWARD! I hope everyone has great holidays and GOD BLESS EACH AND EVERYONE OF YOU!!!!

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    • November 27, 2010 at 10:27 am
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      I kind of confused myself about the marriage thing, the marriage is over I am just not divorced yet 🙁

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    • November 27, 2010 at 11:08 am
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      Michelle, I hope that next year is easier. You have obviously looked for ways to let it work for the good inside you. God bless you, too.

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      • November 27, 2010 at 12:17 pm
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        Kelly,
        Over the past few weeks your site has really helped me. They had taken me off all of my RA meds and I did not have any idea how bad it could be until then. I was using a walking and crying to get to the couch where my prednisone and vicodin was. It is wonderful to have people that can put a good spin on RA and make me laugh!!!! Thanks for all you do!

        Reply
  • November 27, 2010 at 10:26 am
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    Christmas always comes; it does not depend upon us. This is just another new challenge which comes with the Rheumatoid Arthritis disease: waging war against the Grinch.

    LOVE this. and yes so true stole my thanksgiving away from me. and i shopped online so all is well..

    Reply
    • November 27, 2010 at 11:09 am
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      Shannon, the old way of having either holiday is obviously gone for me, but like you say, all is well – there will be new ways to manage.

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  • November 27, 2010 at 10:34 am
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    Kelly, every move you make–whether tiny, medium or large–helps you to win over RA, instead of RA winning the battle! Your biggest win, as far as I’m concerned since I’m a relatively new supporter, is that you have been the mentor for so many who are fighting the battle. Your honesty, your advice,your well–researched RA info, your constant push for changes, and your caring attitude for all of us whom you don’t even know, have already made you a winner to so many people. I don’t have RA, but my 13 year old granddaughter does, and we all feel so grateful to you because you are serving as a great role model for her–and we know only too well the difficult days you face because she, too, is facing them. When you get knocked down, though, you pick yourself up—and she does too–and you keep on fighting. Kudos to you–and many, many thanks!

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    • November 27, 2010 at 11:11 am
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      Dear Vi, you did make me cry. But thank you from the bottom of my heart for these comments. I have hard days & this helps me. ♥

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  • November 27, 2010 at 11:34 am
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    When my daughter was a tiny thing about 3 or 4 she asked me why Jesus didnt get presents for his birthday (Christmas). That year we bought Jesus a birthday present, arranged with the preacher to leave it on the altar at church on Christmas eve, and he donated it to the homeless. This became our tradition, as she grew up we began to include canned foods. Now that she is on her own, she continues the tradition by dontating to the homeless where she lives now and even volunteers every month on the food line. I pick up an extra can of something every time I go to the grocery store, so come Christmas I have my birthday gift to Jesus in helping to take care of his homeless children.

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    • November 27, 2010 at 11:38 am
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      Tanya, how kind of you to share your heart with your daughter & now with us.

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  • November 27, 2010 at 12:32 pm
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    Thank you so much for all that you share. This is the first year we have known “what was wrong” and could put a name to the reasons I have felt the way I do. It has also been the year where I have felt the worst. With meds and some lifestyle changes I am functional which means working 50+ hour weeks in a difficult job and taking care of my young family. I have an incredibly supportive husband who helps tremendously. But the “extra” stuff like holidays are now so much more difficult. I’m trying to think through some re-dos on my holiday traditions. I’m shopping online more. (Though I do miss the black Friday fun.) I’m having my kids decorate bags that I will put store bought treats in, instead of the store bought bags holding my homemade treats. I don’t know what other ideas will come around for things to do. I miss the putting up of food I would do, and the filling of the freezer with treats plus the making of homemade gifts. But now for now, I am trying to be gentle with myself. I am buying more canned goods to donate. I am taking the time to tell people how much I cherish them and how much I appreciate them. And I am trying to take the time to do what I need to feel ok which means more sleep, eating better, etc. Thanks for all you do to help me feel supported, even though you don’t know me. As the process of being diagnosed has gone on, you have been a big source of support for both me and my husband.

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    • November 27, 2010 at 3:33 pm
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      Jen,
      You’re welcome. :heart: I’m so glad that a diagnosis and treatment has meant you can continue to work so much. Do be gentle with yourself as you said. It’s wonderful to hear about your supportive husband, too. :yes:

      Reply
  • November 27, 2010 at 2:51 pm
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    Thanks again, Kelly, for all you do. Tanya, what a great idea. I love to give, but have always had limited funds and family members with real needs. Always did make presents and loved doing it. This year they will be personalized but mostly ordered online.I had to give up cookies, etc. a long time ago, and even wrapping packages. $store gift bags work fine. But what I really wanted to say is that life is full of changes, shifts, and yes, losses, even without RA: children grow up, move far away, then grandchildren do the same, all of us slow down and become less mobile, and unfortunately, sometimes acquire painful illnesses as we age. We, the RA Warriors, have a jump on how to deal with these adaptations: we’ve developed coping skills ahead of the herd, and that can be a blessing.

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  • November 27, 2010 at 3:08 pm
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    As I type this, I can barely hold my arms up to get it done. I gave into the urge to be the “old” me and shopped for twelve hours yesterday. I had fun with a friend and as is tradition for me, tried to make sure every child in our family got the “perfect” gift while saving some money. I am proud of what I accomplished, but at what cost? I will probably pay for this with a flare that last for days. I guess I’m still learning to work with the Grinch, instead of fighting against the Grinch. I am very greatful to you and all the support you give. That gift is worth more than all the shopping for Christmas any of us can do on foot or on line!

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  • November 27, 2010 at 3:45 pm
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    l so dread Christmas every year,because of limits from RA.l too miss baking and shopping,decorating,visiting,etc.the hardest for me is the guilt l feel each christmas(all holidays)to provide a memorable time for my sons.they understand my limits(more than l do,you know how moms are,lol)and appreciate what l can still do and help where they can.when my oldest son got baptized last year,he credited me,saying witnessing my faith through chronic illness led him to not take his life and especially health for granted and mostly led him to live for Christ.l relate so much to your post,as l’m sure MANY do.

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  • November 27, 2010 at 6:12 pm
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    Thank goodness for internet shopping- I got almost all of my gifts yesterday on-line, most with free shipping. They will be delivered straight to Michigan where we will be for Christmas- no packing them into the car for the trip. No crowds, long lines, or coughing and sneezing all around me!
    RA put me in the hospital from December 7-23 last year and stole all of my pre-holiday activities and parties. I am determined to have a better holiday this year. The trick is to make the most of what we have without overdoing it- Payback is usually not worth it.

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  • November 28, 2010 at 4:27 am
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    I found that my $10.00 stand mixer (from a yard sale) makes excellent bread! I can use the paddle and dough hook to make challah, which barely requires much hand-y work. Compared to cookies that seem more wearing, I am using that stand mixer to make Christmas bread and wearing my yoga pants and not caring about all the extra stuff. I am taking extra naps and petting my “therapy” cat – Lucy! My dog and cat and kids all make the goofy extra – erraneous stuff seem insignificant. My husband can wrap the gifts, besides he better at it anyway!

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  • December 29, 2013 at 6:33 pm
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    When I could no longer shop at the mall, etc., I moved to shopping the internet. And I have found even more unique gifts and low prices than shopping locally. Actually, I’ve found lots of our local shops are online, now, and I can still support them!

    Instead of the “big” tree, I have 3 tiny trees. Pre-decorated. Lights even already on them! All I have to do is bring them up from the basement (in my stair-lift), one at a time, over 3 days, and just set them out where they need to be. Why me? Because all the trips up and down the stairs aren’t good for Himself – who REFUSES to use the stair-lift!

    Oh, yeah! I bring up other things, again, one, two or a few at a time. I start on Dec 5th (St. Nicholas Eve) with the St. Nicholas Day things.

    When it’s time to put things away (after the 7th of January) I reverse the process, taking 1, 2 or a few things at a time down the steps on the stair-lift over a few days – or several days (depending on my flare condition).

    I’ve had to make other adaptations over the years, but I’m so used to them I’ve forgotten exactly what they are. I just look at it as “just the way we do things.”

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  • December 24, 2015 at 11:12 am
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    One lesson RA has been teaching me these past 30 years of living it, is to receive – to allow others to help without feeling a burden. I’m finally able to see the joy in their eyes, feel the love from their hearts when even total strangers lend a hand. My vulnerability makes room for their generosity. Thank you God for this very important lesson.

    Reply
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