The Me Before Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

The Me Before Rheumatoid Arthritis

the me before RA doing stuccoLet me introduce you to the me you can never meet: The Me Before Rheumatoid Arthritis If you have RA, you spend lots of time adjusting to change. For me, the biggest adjustment has been to the disability.

First, there is frustration that I cannot do what I still want to do.

But the “old me” is still around – she lives on in my mind. However, she no longer matches the “physical me”.

The second frustration is that no one else can know the mental me because the physical me cannot perform the actions which the mental me still wants to do.  Effort has been spent to grieve what I can no longer do, accepting a new norm, and finding new ways to express that old me who did not die. When I meet someone new or fill out a bio, I hate to be asked what I like to do. I CAN’T do what I like to do anymore! So, I act like a grown-up and focus on things more important than whether I can quilt or play tennis.

For this reason, I have been consciously learning more mature ways to define myself. While the Rheumatoid Arthritis will not allow me to express it in the same ways that I once did, I am still… creative, ambitious, independent, generous, and strong. I am still the kind of person who wants to get big things done!
me before RA doing stucco

It has only been three and a half years since my Rheumatoid Arthritis became what I always call “full blown,” so I know I am still adjusting. Perhaps that is why I still get ticked off when people see me as lazy or wimpy. I wish I could show them that, before all this happened to me, I could have done what they are doing, too – at least as good as they do it. That is ironic since I spent so much effort moving forward.

If it’s okay, I would like to look back over my shoulder one more time. Just long enough to let me introduce you to the me you cannot see:

The Me in the Scrapbook

The old me is still in the scrapbook…

Nothing is too hard. If I can’t buy it, I will make it. I sew my own curtains,  slipcovers, and clothes for my little ones. If I can’t buy it, I will make it.I have refinished dozens of pieces of furniture. I make Christmas presents. I am fit. I love to run and swim for hours. I do not ask for help. My dad was a United States Marine; sit-ups and push ups are recreation!
me before RA applying stucco
Once, I bought a home with a 2 foot ditch dug out all the way around it. I convinced nearby road workers to dump a whole front loader of dirt in my front yard. I spent weeks with a wheel barrow and a rake grading the entire property. Then, I landscaped it properly so that it was the envy of the neighbors. I used to trim my trees, clean my gutters, and plant my vegetables. I kept my front entrance like a House Beautiful magazine cover.

I bought 22 fifty pound bags of concrete, mixed them with water in my wheel barrow and put two coats of stucco on the outside of that house, too. Of course, I painted the whole thing inside and out. I even painted the playhouse to match. Inside the playhouse, I created sky on the ceiling, and flowery dunes on the walls.

I make my soup from scratch. I bring meals to the sick. I have hosted many dinner parties and receptions in my home and in large church halls. I used to make all of the food and decorations myself. I can endure pain. I am a pretty tough cookie. I survived encephalitis without medicine.  I had five babies at home with no pain medicine. I have homeschooled my kids. Two of them have a disability. Really, this is the tip of the proverbial iceberg.

me before RA mixing stuccoWhew! That was a whirlwind tour down memory lane. I hope that did not exhaust you, too.

I have had to say good bye to the old me. As if that were not hard enough, someone told me last week that I just need to be willing to put forth some effort. People only say that because they are judging me by what they see on the outside. They don’t know the other me, the one who still lives on in my mind. I guess I could show them my scrapbook. (NOTE: I will post the photos on the Facebook page, so you can see them enlarged, with notes.)

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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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74 thoughts on “The Me Before Rheumatoid Arthritis

  • June 9, 2016 at 4:45 pm
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    Wow , I keep telling people just what u said. the physical me cannot perform the actions which the mental me still wants to do

    Reply
  • January 19, 2020 at 10:50 am
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    Hi I’m Shanice

    I’m 27 next month and living with RA for +- 3 years now,and this year I think is my worse year the continuous pain,throbs and aches. People around think I’m faking when I talk about my pain, so many times I hide it. My hands don’t feel the same shoulders pelvic knees feet toes my whole body is changing but I push everyday to get everything done but at the end I suffer. All because I don’t want to get looks as if I’m a hypo like I was called many times before. Home remedies are the worse exercise makes me feel like I was tied into a knot and slowly released. I have 3 kids that keep me on my toes. I basically do everything on my own most of the time through all the aches and pains. I’ve adapted to my body now as it’s changing slowly but it’s hard knowing that I can’t do many things especially play games with my kids because every game involves me using my hands and bodywork etc.🙃🙃

    Reply
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