Perseverance in Fighting Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

Perseverance in Fighting Rheumatoid Arthritis

a gift of large Florida lemonsWhat keeps you fighting?

I tried to quit…

At one point, I thought I would be fired as a professional patient. No such luck. I’ve also tried to quit Rheumatoid Arthritis. Maybe you remember my Eject Button. I tried to quit another chronic illness once. Maybe you read my ostrich jokes. I haven’t had a lot of success at quitting.

Once I was also tempted to quit the blog. That lasted about an hour.  My odd list of things that keep me going: God, patients, mean people, and children.

   

1) God inspires me to fight Rheumatoid Arthritis

I’m thankful that God has helped me know that my life is valuable and has a purpose. This is the first thought I turn to when I’m tempted to despair. I can never be completely alone since His love does not waver.

2) Patients inspire me to fight Rheumatoid Arthritis

Every day, patients inspire me in my own fight against Rheumatoid Arthritis and to blog on! There is no way to say how grateful I am for the chance to know such fierce and lovely people! The most inspiring thing of all is when another RA’er decides to fight RA because of seeing others fighting on this site!

Here’s one:

I must say that as a newly diagnosed sufferer of RA, this site has brought me much comfort and reassurance. I was diagnosed with RA in November and it is today after coming across this site that I have actually built up enough courage to start the DMARD treatment. Since my diagnosis I’ve been taking Celebrex to ease the pain… it’s not really helping that much. I too was afraid of the side effects of the DMARD meds. My RA has gotten to a point that I can no longer deny the fact that I need to start treatment or lose my mobility all together. I want to thank you for all of the information that you have posted on this site and in such a humorous way. I’ve found it most helpful in helping me decide my next steps in fighting this disease.

How could I quit knowing that?

Finding out I’m not alone on that swelling post helped me, too:

Just wanted to say Thank You! For this site!! I was diagnosed with RA about a year ago and reading the responses/articles, etc is like reading my own life story! I thought I was going crazy and felt so alone but after finding this site I feel sooo much better and sane! The swelling part really hit home-I have a great deal of pain and stiffness in the morning in my hands but not much swelling and my dr. says the exact things I read here; “Have you tried an antidepressant?” “I don’t know why you say it hurts – there’s no swelling”, etc. Thank you Thank you Thank you!!

3) Mean people make me want to fight back

Many responses to Rheumatoid Arthritis are insensitive and inappropriate. We laugh about it as much as possible – here are some gems. Comments inspire me to never give up until the whole world knows the truth about RA. One reader wrote: The worst comments for me are “See a psychiatrist, if it weren’t in your head, the doctors could help you. You always hurt when I need something. You like being sick or you would find a way to fix it.”

Thank you to those people who say ugly things like that to people with RA. You put a fire inside of me that no one can put out.

4) Children inspire me to fight Rheumatoid Arthritis

If those inspirations wane, I have one more. I will never quit my fight because my children will always motivate me. I cannot describe it better than Charlotte does at the end of her story:I want the kids to be able to fight this monster with a vengeance if need be. I am going to be the new face of RA. This journey has been one of great sadness and joy. I am in a much better position than my poor loved ones were in when battling this disease. I am winning and have no plans of ever giving up. We need to find a cure and that is why I am here.

Recommended reading:

This blog is my submission to a blog carnival on Sweta’s blog. I hope you’ll visit her blog. Sweta has been a support at times when I needed encouragement.

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/

23 thoughts on “Perseverance in Fighting Rheumatoid Arthritis

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  • August 9, 2010 at 6:40 am
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    Kelly…Thank you for being there…Your site means so much to me and I thank God for it every day. It keeps me fighting a disease that I feel would consume me if I let it. I will keep up the good fight thanks to RA Warrior and the wonderful women and men that I have been privileged to know. The patient stories that sound so familiar reminds us that we are not alone in this battle and that we must continue to educate and enlighten if we are to someday conquer this disease, along with many other auto-immune diseases. God Bless the work that you do hon…Love Ya…

    Reply
    • August 9, 2010 at 9:37 pm
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      Thank you Susan! Helps me too – “reminds us that we are not alone in this battle and that we must continue to educate and enlighten if we are to someday conquer this disease” Amen!

      Reply
  • August 9, 2010 at 8:15 am
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    Kelly….THANK YOU for this reminder….just 15 minutes I was literally crying as I am so tired, of pain, of not being able to do things, of not wanting to do things, of being tired of being tired, and now with this BP issue…the was a perfect reminder of how God works in our lives, just when I needed that boost He worked thru you and sent it to me. God Bless you Kelly…and all the other warriors fighting the RA fight! Hugs :heart:

    Reply
  • August 9, 2010 at 8:37 am
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    i would have to say that God, family, and close friends kept me persevering though there are times i’ve given up.

    God – He’s my source of strength and hope everyday. People around me (including my relatives) are amazed whenever i say that i have RA because they can’t tell that i have one or suffering from one. Knowing that my God loves me and understands what i’m going through is more than enough.

    Family – most of the times, they are the one fighting for me. they pray for me. they even try to look for some alternatives that might help or benefit me. their love for me gives me strength to also fight RA.

    Friends – especially my church friends, they continue to include me in their prayers. they give encouragement whenever i needed one.

    Reply
    • August 9, 2010 at 9:39 pm
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      Charizza,
      It is wonderful to hear about so much support! :yes:

      Reply
  • August 9, 2010 at 8:40 am
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    oops…i forgot to add that this website also helped me a lot. knowing that i’m not alone, that there are other people suffering and fighting RA, gives me that sense of belonging. Thanks Kelly! 🙂

    Reply
  • August 9, 2010 at 10:22 am
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    I strive to keep on fighting because of my sons and my family. There was a time, many years ago, when I was struggling with several undiagnosed autoimmune diseases including RA, and vasculitis. No sites existed like RA Warrior. The internet didn’t even exist. And there certainly were not as many diagnostic labs to detect RA available then.

    At one low point, I contemplated if my family would be better off without me. After struggling with this through prayer, and thought, I decided I could NOT do that to my sons or husband or family. So here I am, 25 years later, happy with life (although not happy having chronic autoimmune illness), I have persevered through years of pain, surgeries, hospitalizations, loss, tests, doctor visits, and treatments, because of my faith, my sons, my husband, and family. And now because of the wonderful, supportive, informative website RA Warrior, and all the terrific people I’ve met there. It would have been invaluable to me to have had that 25 years ago, and probably would have helped me to not get so low as to contemplate leaving this world by my own hand.

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    • August 9, 2010 at 9:41 pm
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      Julie, I’m so glad you persevered. You make such a difference to me.

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  • August 9, 2010 at 6:26 pm
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    Thanks for the thoughts Kelly…your list of 4 reasons to keep fighting help me focus on what’s important in life! RA (any chronic illness for that matter) has a knack of sending us down the wrong path at times and we need a swift kick in the behind.

    Reply
    • August 9, 2010 at 10:15 pm
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      Glad I could be of service if you need a swift kick. LOL. Take care. 🙂

      Reply
  • August 9, 2010 at 7:35 pm
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    Hi
    I just wanted you to know that I feel the same as the other women have expressed about how I enjoy your site so much. I’ve had RA about 13 yrs and always knew I need a support group.I have a ‘just do’t get it family’ But it was too much trouble to find and go to one. This is perfect, having it on line.
    Don’t you ever give up.You are doing a great work. Pray that the Lord will show me a purpose for the rest of my life.Without one I really don’t want to go on.

    Reply
  • August 9, 2010 at 10:40 pm
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    I’M THINKING WE ALL NEED TO DO THAT NFL STADUIM WAVE….GO KELLY, GO KELLY….GO KELLY! Now TAHTS A CHEER:) WHOO-HOO!

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  • August 9, 2010 at 10:53 pm
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    Kelly, so many of us come to you for these kind of posts. It is easy to lose sight of the important reasons to keep going, amid the pain and chaos we experience somedays. Thanks for reminding me what is important.

    In response to your question, “What keeps you fighting?”, besides my family, I try to ride one of my motorcycles as much as possible. I have rode since I was 10 and now push myself to ride with RA. If I ever have to give up riding, RA has defeated me both physically and mentally.

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  • August 10, 2010 at 3:37 pm
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    Sheer determination not to let RA beat me (I’m VERY stubborn!), having a fantastic family who have lived this with me every step of the way (23 years and counting!)and in my darkest moments, the thought that no matter how bad I’m feeling there is always someone else in more pain or having a more difficult/testing/hard to live through time than me. I’m not taking anything away from how hard it is to live with RA but whenever I’ve got to the stage where I’m feeling really sorry for myself I’ll see or read something about someone elses life and I just think myself lucky. When I’ve had flares that have had me bed ridden and hardly able to move any joint it’s just the thought of being able to do the small things again like feeling the wind on my face again, brushing my teeth, having a long hot bath….all the things we take for granted when we are “well”. Thanks Kelly for making me think so deeply about RA and how it affects us, something I tend to avoid but I know is something we should all do and indeed tell people about (I’m still working on that one :))

    Reply
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  • March 27, 2012 at 10:16 pm
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    This has been such an inspiration for me I was diagnosed with this at 27 and was really worried about what it all in tailed. This blog has so much information and is so helpful. I have been on the meds and know I am coming off of them all to try to start a family. I am really worried about how this could effect my pregnancy but I know there are many ways that you show on here to try to fight with out the meds. Thank you so much for everything you do this is a great blog and I look forward to every new post that is done.

    Reply
  • March 28, 2012 at 1:03 am
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    For me, many of the same things that keep you going are what keeps me going. While in the hospital during that 11 mo stay where I was 100% dependent on the staff and my family for EVERYTHING was a pretty low time for me. First knowing that I was literally missing months of my life, yet had been talking to people and doing so appropriately and intelligently is a VERY scary thought. So scary in fact that in the fall of 2011 while at the nursing home, I had an incident where I had awakened in the middle of the night and was in a great deal of pain. I felt as if I hadn’t had my midnight meds. It was charted that the nurse had given them. Normally, all that would set my mind at ease was speaking to the nurse who gave them. And the night shift was 7pm to 7am so it was normally an easy thing to verify it. But the nurse had gone home ill and was planning on going to the ER because she was ill. So the nurse who took over the hall called her. In the meantime, just not being able to remember was enough to bring back all of those moments in the hospital where I didn’t remember anything and I became pretty upset. Unfortunately, the nurse was not one who normally worked our hall and didn’t really know me. So I am sure she wondered why I fell apart over something so insignificant. The nurse who had given me the meds did call and when she called they brought me the phone. I explained to her that my doubt was NOT in her. It’s not like I thought she’d signed them out as given and took em herself. She’s not that type as she has pain herself and has her own meds and wouldn’t want someone to be in more pain because of her taking their meds. She’s too compassionate and knows too well what high levels of pain are like. My doubt was in myself. Once they told me the meds had been signed out, I knew she’d given them to me. They decided to call to make sure something odd hadn’t happened, such as her signing the meds out and getting pulled away for something pressing and forgetting to bring the meds in or whatever. I was so upset because it was truly a scary moment for me.
    Secondly, I had another potentially low moment in the hospital. It was when I was told I would likely never walk again. I was pretty stunned. I needed to be alone to think and pray. So I asked the staff to shut my door and just leave me alone for awhile (this was obviously before an incident with a door being shut causing me to have to scream for approx 20 min for someone to hear me and come help me which is another incident that has left a lasting mark on me). I remember praying and feeling a sense of peace and safety, a sense that no matter how things turned out, they would end up ok. Whether I was in a wheelchair or not made no difference to me in what I did for the support groups etc. I could still be the news/info person I was before. I didn’t need working legs to do that. And my husband has known from early on that my health was not great and that I never knew what issues we’d have to face because of it. So thankfully, while he prefers me able to walk and do things, that’s because he knows I would rather be able to get out and do things with him and our son rather than stay home alone, something that happened frequently in the months before the infections and falls. But had anyone asked me even 6 months before my fall what my reaction to being told that I’d not walk again would be, I would have said that my reaction would be something like “Watch me.” because I’d take being told I couldn’t/wouldn’t do something as a challenge and fight to prove the doctors wrong. But that fight never really came up this time. I just had an amazing peace over the whole situation. I didn’t have any guarantees of specific answers, but I was not worried about my future. I cannot say that I kept that lack of worry the whole time during my stay. But the moments of worry were fairly momentary.
    It is only because of my faith in God, my family and my friends that I was able to come through those dark days and be stronger than I was before. I even can be thankful now for some of the experiences I had because of this whole situation.
    My family is another reason I persevere. They stood by me through those dark times, so it’s the least I can do to keep on fighting. My family, especially my son, husband and Mom, were there even when it made no difference to me that they were there.
    I also persevere because I want to help inspire others. I want them to know that despite all of the challenges I face, it’s possible to have a happy, well-adjusted life with RA. I may have to cautiously pick my activities so that I make sure I have enough energy for what it is I’d like to do. I may need to plan rather than be spontaneous but that’s a small price to pay to be able to do things I enjoy with my family, outside of a nursing home, which I’d been told I’d likely not live outside of either a hospital or a nursing home either. So far, the docs were wrong on both of their prognoses and I am happy about that. I sometimes wonder if they told me those things as a bit of reverse psychiatry. My family is what kept me going for many months. And they still keep me going to an extent. On those bad days when everything hurts and moving is the last thing I want to do, they will take good care of me. They are so special. If I am hurting and need a drink from the fridge, all I need to do is ask. If I need help dressing, or doing laundry, or any number of things, all I need to do is ask.
    I also do what I do in regards to the various health related things I am involved in is to make a difference. If by telling my story I help one person avoid some of the things I’ve had to deal with, then I’ve done my job. If one person realizes how important early aggressive treatment is by hearing my story about how I was not given a DMARD during my childhood and now have joint damage that could have been prevented, then I’ve done my job. If I’ve helped someone find the tools to better handle their disease, then I’ve fulfilled my purpose. If I am nothing but a listening ear when someone needs that, that I’ve again done my job. I honestly feel that God has taken the JRA and as He does with everything, used it for good. I’ve met so many wonderful people because of JRA that I can’t wish I never had it. I have learned so much because of my JRA. I can’t even begin to list what all that I’ve learned. But I think one of the most important lessons I’ve learned is one of God’s grace to get me through such trying situations, His strength sustaining me when I am so weak I don’t think I can keep on. I know that instead of saying “in spite of my JRA, my relationship with God is stronger.” I can say that it is because of my JRA, my relationship with God has been made stronger. As Paul said in 2 Cor. 12:9-10, “9 And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.”

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  • August 9, 2013 at 2:00 pm
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    Great website-Happy to participate

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