Embracing the Future, Even with Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

Embracing the Future, Even with Rheumatoid Arthritis

Thanks to Rheumatoid Arthritis, not the future we expected

Palm reading pictureNone of us knows the future and it often surprises us more than we expect. Getting a diagnosis of “Rheumatoid Arthritis” usually comes with life changes we couldn’t anticipate. No one expects to feel old before it is time, having friends and relatives twice your age who are able to outrun you.

I remember when I was diagnosed and started my first RA treatments, I expected to get well. That lasted a long time. Actually, I still expect that I will get my turn at remission. It’s just a matter of time. Sometimes in the back of my mind I must think I’ll win because I am not willing to give up. Eventually this evil disease without a soul must reach the end of its effort.

Still, the functional losses were sudden, producing shock and grief. It helped to talk with a counselor about it for a while.

Adjusting to unwelcome changes to the future

Last September, my son Roo was barely seven when we visited the pediatric ophthalmologist. She is good with eyes and great with kids. Her thorough testing showed Roo had 20/20 vision in the right eye, but 20/600 in the left. And worse, he had no depth perception since his brain only used one eye.

Doc was encouraging that therapy could improve his vision so that one day he would do well wearing one contact lens only. Roo seemed pleased with the answers taking it all in stride. We got a milk shake and made plans for getting glasses.

That night, I read up on the best eye patching system to cover the strong eye a couple hours a day. We ordered a soft patch with a puppy face. Lying on the sofa, he told me, “Today, my life changed,” and he burst into tears. He realized some things in his life and future would not be the same.

Roo is very doing well and his eye is improving. He’s adjusted well to the changes. But he told me once me he realized some doors might not be open to him (like astronaut, I think) and that made him sad. One day he said, “I hate my life.”

Embracing the life God gives us

I told my son we cannot know the future, but… This is your life. It is the only life you have. These are the only eyes that you have and you need to love them. I cried as we counted up lots of blessings… And you have plenty to eat and parents who love you, and you sleep in a bed WITH PILLOWS!

We know one day there will be answers for Rheumatoid Disease – and a cure. But, what is our immediate future? We don’t know. We don’t know when the next treatment will be approved or whether it will work on us. We don’t know whether a remission will begin or end.

All we know is this is the only life that we have under the sun and we need to live it. And since God gave it to us, we love it as much as possible, counting whatever blessings we can to outnumber the losses.

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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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19 thoughts on “Embracing the Future, Even with Rheumatoid Arthritis

  • January 2, 2013 at 8:40 am
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    Your heart must have broken to see your baby have such a profound realization at such a young age. Having RA I believe helped you to help him get through the change. I agree with all you said. At first it is difficult to accept the future that has been thrust upon us. Everyone comes to it eventually in their own time. It’s taken me almost three years. But, one day at a time is how I live now. Thank you for sharing that story!

    Reply
    • January 2, 2013 at 8:53 am
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      Thank you so much for your kind words and understanding. I went through it with two of my others who have severe hearing impairment, but it’s still hard to see their hopes dashed.

      Reply
  • January 2, 2013 at 9:41 am
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    This post was fabulous. I try to dance around this same topic on Daily Strength–the need for us to embrace our new lives–I don’t want to push it on others because I won’t add to their guilt or depression. Yes, I enjoyed when I was at full strength–push,push, push–running, aerobics,8 dishes at Thanksgiving, 9 more on Christmas eve, 8 again the next day for Christmas, etc. And the exhaustion from pain can be overwhelming. But this is our lives. We must relearn how to love the life we have. I’ve changed my holiday routine each of the last two years, tweaking just a bit. And you know I have still had wonderful holidays. This year with all three sons home the laundry and food is too much. So next year I am going to make a chart. We will take turn doing laundry, providing meals, cleaning up. I know they will pitch in as will my ten year old daughter. I was never one to sit around and rest, but there is a peace in that. I’m learning to embrace quietness, relaxation, conversation, etc. I couldn’t lift a 2 liter bottle to pour from it this year, but asking my brother to help was a beautiful moment because I knew I was loved and cared for by many. Embrace your life–and when it is too much–nap. That’s my advice.

    Reply
  • January 2, 2013 at 10:13 am
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    It is so hard when your children our sad. My son had a forceps injury at birth and had to wear a patch for 6 hours a day for 10 years. When he was a baby I put it on while he was sleeping and that gave him a few hours before he started to pull it off. As he got older we used video games and movies to stimulate use of the strong eye when he wore the patch. He played division 1 college tennis, legally blind in his left eye!
    Thank you for writing this blog. I am a new RA patient and it helps alot to hear your
    words of wisdom and stories.

    Reply
  • January 2, 2013 at 12:49 pm
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    I’ve posted this before on the facebook page but please everyone, do not give up on remission or a cure. I have three autoimmune issues. I was miserable with Ulcerative Colitis for 12 years. I had given up hope of any relief and was frequently in and out of the hospital. When I was referred to a rheumatologist after one of those hospital visits(my ankles were red and swollen and the doc took one look and scheduled an appt), I was given Humira. After a few months, it was like a miracle. The horrible cramping and bleeding came to an end. Almost six years later and changes in my meds, I am still in remission from the UC. Sadly, the Rheumatoid Disease is still progressing but I know from experience that there is hope. I am not living the life I thought I would live and believe me I have grieved for the loss of that. However, I am starting to recognize the hidden blessings and lessons learned from these experiences. I was a type A control freak. Now, I have no choice but to go with the flow. I have more compassion and patience for others. Gratitude, hope and faith are my essentials. Sorry for the soap box speech. I just hope someone gains some encouragement and a little hope. Happy New Year. May we all be blessed with a cure.

    Reply
    • January 2, 2013 at 4:02 pm
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      Such beautiful words inspired by your own Kelly … esp those referring to God, really blessed me first thing this morning, thank you so much

      Reply
  • January 2, 2013 at 3:18 pm
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    Thank you Kelly for posting this story. My daughter goes for her first rheumy appt on Thursday (she’s 23). It looks like she has RD, she actually said she hopes that’s what it is because I’ve got it and I can help her. I felt so sad, all she wants is answers. It’s hard when you can’t fix your kids, wish I had a magic wand. You listed the blessings your children have, add that they have an awesome mum to the list!

    Reply
  • January 2, 2013 at 4:12 pm
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    I went to vote, but you need a Facebook or Twitter account to vote. Unfortunately, that’s something I’m not willing to do. 🙁
    Good luck though!

    Reply
  • January 2, 2013 at 6:45 pm
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    KELLY,
    Just wanted to let you know about the voting for the best health blog. It appears that your blog is listed several ways (rawarrior, rheumatoid arthritis warrior, etc.) and votes are not going in one place. Can you fix this so all your votes go together and are all counted. Hope you win. Good luck. 🙂

    Reply
  • January 2, 2013 at 7:18 pm
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    Kelly, my son has the exact same eye condition. 20/20 in the left 20/600 in the right. No depth perception. He was born this way, and is now a thriving 16 year old. He may not be into contact sports or soccer, baseball etc. due to this, but he is a distance runner. His biggest obstacle so far is driving. It’s doable, but takes a lot more time. Just let him know there are a lot of others out there with the same wonderful blessing. He sees the world different from everyone else, and that is something special.

    Jenn

    PS. My sons awesome patch had an owl on it!

    Reply
  • January 3, 2013 at 4:37 am
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    Great post and comments. All very helpful! I am sorry your son has eye issues. 🙁 My daughter is waiting to be tested for dyslexia and has symptoms of possibly RA or PsA. I homeschool her now due to being tired of everything the teachers demanded I do (basically reteach her day after she was at junior high for 7.5 hours) so that has also helped with her PE issues. I was tired of getting temporary no running doctor notes instead of a permanent one. Not much different than adult doctor battles. And the school had little common sense. She swelled somewhere every time after running. Showed up in an xray of her toe even. Anyways, I am sorry your son is having struggles. It is not fair, and it is ok to be upset. I agree with another poster that it takes time to accept what you are dealt. I know my daughter is no where near accepting what dyslexia (or what is found) has made difficult for her. Baby steps and hugs.

    Reply
    • January 3, 2013 at 8:33 am
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      Thanks so much Jenn. As a fellow mom, your sympathy is appreciated.
      This lack of “common sense” about disabilities is something we hope to improve by creating more awareness.
      Baby steps as moms and activists is so true.

      Reply
  • January 3, 2013 at 6:41 am
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    Hi, Kelly, I’m also trying to vote. There is a badge on the website that they say you can embed in your blog so maybe we can all just click on that. I can’t find where to vote for you, and your work is so valuable to me, I want to help!

    Reply
    • January 3, 2013 at 8:19 am
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      Click on the big blue “Vote for Me” logo on the front page of this site. To get to the home page, click the big speak logo on every page, or the word “Home” on the top menu. Thank you! We can vote daily as possible.

      Reply
  • January 3, 2013 at 10:58 am
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    If you go directly to the site and click on blog names by alphabetical listing (there’s a tab), your blog is listed twice–this dilutes your vote, so you may want to ask them to combine the two if there’s a way!

    Reply
    • January 3, 2013 at 11:23 am
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      no, Frida, it’s actually listed 3 times. We have been trying to get them to correct this but they are unresponsive. Please vote for the highest one anyway. Thank you!

      Reply
  • February 14, 2013 at 11:55 pm
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    It is nice to finally have a site where I can relate too. Since i was 22 I have been dealing with RA and Systemic Lupus. I am having such a hard time right now with my RA. I’m also having a hard time dealing with people who dont understand what I am going through. Just because I look ok doesnt mean I am. For the last 11 years I have just kept my disease to myself and/or ignored what has been going on with my health. I am so frustrated with the doctors also..I get told all the time “you are so young to having to deal with all these health issues” OR i am told I am just looking for attention.
    I guess I am just at a loss right now…I just sick and tired of being sick and tired….
    BUT seeing this site has made me realize that I’m not alone.

    Reply
    • February 15, 2013 at 12:19 am
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      No, you’re definitely not alone Suzanne. I wish none of us were, but so many are in this boat with you.

      About that “looking for attention,” I often joke to my family about how my active imagination is attacking my shoulders or my jaw, etc. It lets me try to make a joke out of how many people just think it’s really nothing.

      Reply
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