Interview with a young woman living with Rheumatoid Arthritis, Part 1

Cool things in common don’t include living with Rheumatoid Arthritis

Pamela

A couple of months ago, I met Pamela. She is a soft-spoken girl who loves God and the Jonas brothers. She adores her family. In spite of our generation gap, we have a lot in common. We both cut coupons, go to church, and love music, tennis, Twitter, and homeschooling. Sweet, huh?
Unfortunately, Pamela and I share another thing: Rheumatoid Arthritis pain.

An elusive Rheumatoid Arthritis diagnosis

In the winter of 2004, Pamela was 13 years old. She was a healthy athletic teen, especially loving to run. One day, she could no longer run. She remembers, “Somehow… all that disappeared.”

“I woke up stiff one morning and had a lot of trouble moving all day long,” she says. Pamela’s first clue that she was sick was lower back pain. Her parents took her to a doctor, who recommended a rheumatologist. A few months later, the rheumatologist ordered x-rays and blood tests. Pamela’s diagnosis: “growing pains.”

Since the doctor spoke “like he was ordering lunch,” Pamela tried to believe that nothing was wrong with her. She recalls, “I believed him and went along my merry way. I was so confused as to what was going on.”

Over a year later, Pamela was still having pain so she went to another doctor. This time, she was told that her legs were too long and her muscles were too firm. She was prescribed exercise such as “Pilates or yoga.” Pamela’s response: “I believed her. I kept having pain. After that, we just stopped going to doctors. My parents and I were so discouraged as to what was making me have pain.”

Every morning, Pamela woke up stiff and in pain. So, of course, she did eventually look for another doctor. In 2008, a rheumatologist ordered cat scans on her spine and bone density tests on her wrists and feet, which revealed erosions that signify RA. At age 17, Pamela was finally diagnosed with JRA or Juvenile Rheumatoid Arthritis. Her lab (blood) tests were still normal.

To be continued:

Fun & inspiration coming up tomorrow in part 2 of our interview. Pamela and I talk about life as a teen living with Juvenile Rheumatoid Arthritis. Just last week, Pamela started her own RA blog. Maybe you want to follow her blog too.

Personal Note: My troubled reaction to Pamela’s RA diagnosis story

This part of Pamela’s story probably sounds familiar to some of you. Unfortunately, getting a Rheumatoid Arthritis diagnosis is more like crossing the Atlantic in the Mayflower than a jet plane. Many find it fraught with detours and perils.

I have written blogs about some of the causes of Rheumatoid Arthritis diagnosis being so difficult. However, one of these days, we need to look at the consequences of that. It is not acceptable for doctors to dismiss symptoms of Rheumatoid Arthritis because of negative blood tests. The only reason for this is that doctors are not educated enough about what the onset of RA actually looks like.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

20 thoughts on “Interview with a young woman living with Rheumatoid Arthritis, Part 1

  • December 1, 2009 at 8:52 am
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    wow- same ole story passing again.. different person.. it’s so sad.. sucks… that damage she got could possibly not have occured if there had been early diagnosis and intervention.

    i still can’t let go of the fact that she STILL has JRA as an adult.. it’s not RA it.s JRA.. and she has a blog calling it RA when its not.. this is just a very basic thing that makes a big difference with the diseases yet people, including rheumatologist perpetuate this common practice making it harder for awareness as well as understanding of the prognosis differences etc….

    just the same, she is adorable in that picture and I look forward to learning/reading more.

    Reply
    • December 1, 2009 at 9:28 am
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      Issadora,
      I’m planning to address RA versus JRA on Wednesday, I think, when I am finished with Pamela’s interview.

      In the meantime, I’ll just say that I have admiration for Pamela and her recent decision to blog about her RA / JRA and I’m hoping she receives lots of support. O:-)

      Reply
  • December 1, 2009 at 9:07 am
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    And this “not getting diagnosed” for so long baffles me because these aren’t just general practitioners. These are the rheumatologists. They should be well aware that one can have negative lab work and still have RA.
    My GP diagnosed me on the basis of my hands and feet and because prednisone helped so much. The rhemy agreed although my blood work is neg. I was the one that was most surprised about my dx. 🙂 so every day, my body reminds me. 🙂 I am very thankful for my GP!

    Reply
    • December 1, 2009 at 9:34 am
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      Hey kmom,

      This is only the second time I’ve heard of a doctor actually trying this method: See what the prednisone does to the symptoms.

      I’m amazed: I have suggested that tactic as a diagnosis tool, but only in theory. I’m so glad it worked for you to get an answer. I wonder whether more doctors are trying that. :teeth:

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      • December 1, 2009 at 11:40 am
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        Frustrating indeed. But glad that she was finally diagnosed.

        My Rheumy mentioned that a positive reaction to prednisone was also part of the confirmation of RA induced inflammation.

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  • December 1, 2009 at 9:39 am
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    I hate that anyone has to endure this disease, but it hurts me to see kids with it. I was diagnosed with it at age 45. I’m ok with that, I lived most of my life before being diagnosed with it, but I couldn’t imagine having to go through high school, college and your early adult life with either RA or JRA.

    I agree with kmom, these were rheumatologists. Why would they just pass her off as having growing pains or muscles were too firm? These are our specialist that we rely on to help us.

    Reply
    • December 1, 2009 at 5:24 pm
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      Tharr, I so agree with you. I cannot imagine how different my life would have been had I been diagnosed at Pamela’s age. My prayers go out for you, Pamela, that in ten years time there will be even more new meds for you and that this will all be a thing of the past for you.

      Noelle

      Reply
  • December 1, 2009 at 11:45 am
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    Morning Inspiration,,,,,, THANKS KELLY…This was …

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  • December 1, 2009 at 10:10 pm
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    Very touching story, I hope Pamela could face her condition with God’s loving care..

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  • December 1, 2009 at 10:43 pm
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    I feel so bad for this young lady, here we always say how devastatied we are that we have RA, but when it comes to one so young, I dont know how I could have gone through my teen years with RA….. and Kelly I was on prednisone most of my youth, it was all they had back in the 60s for asthma… go figure, one med that can help so many has so many ill effects

    Reply
  • December 2, 2009 at 9:20 pm
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    I hope my daughter is as strong as Pamela is.

    Jordan was diagnosed almost 5 years at the age of 3. Part of me thinks that the younger you are when you are diagnosed the better. You don’t know/remember what life was like before. All these meds, appts, tests and so on are routine for J. Me being 35 and just diagnosed has sent me a spin. I’m having a hard time adapting to everything and I find myself having to look to my 7 year old for support.

    Reply
  • December 2, 2009 at 11:37 pm
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    Pamela’s story sounds similar to mine except I was diagnosed at 23 and had been having symptoms since High School…I’ll be praying for her.

    I think one of the oddest things about it is that so many people with RA do seem to be either younger or older; being in the teens or early twenties seems to be a bit of a no mans land. I don’t know if that is just my perception based on sitting in my doctor’s waiting room for too long but…for what its worth.

    Reply
  • March 6, 2010 at 4:16 pm
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    My daughter was diagnosed at fifteen with RA. She will turn eighteen this month. Her arthritis is the adult version and I am humbled everyday to watch her live her life coping with this unpredictable disease. I am amazed at her bravery, and desire to live her life the best she can with the cards she has been dealt. Her faith sustains her and frankly she has been much braver than I have. Good luck Pamela.

    Reply
    • March 6, 2010 at 4:33 pm
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      Jane,

      We have several young people who comment on the blog, so I don’t know if I’ve ever spoken with your daughter. Please give her a hug for me. The only thing I can imagine harder than living with RA would be to be a young person living with RA.

      Thanks for being the wonderful kind of mom who would read a page like this. So many with RA have families who don’t understand at all or ever read something like this story so they will. She’s lucky to have you. God bless you both. :heart:

      Reply
  • October 30, 2010 at 10:33 pm
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    I am 18 and was diagnosed with RA two years ago. I just discovered this website/blog, and I have been looking for other people my age with RA; I have never talked to anyone my age who has it. Living with this in college is hard, and I would love to connect with someone who shares my age, health situation, and faith! Do you know if Pamela has a blog anymore? Anyway, thank you for blogging about this!

    Reply
    • October 31, 2010 at 9:40 am
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      Hi Allison. I’m glad you found us! It must be so hard for you. I have daughters your age & I can imagine! Bless your heart! :heart:

      There are a number of girls your age I hear from here on the blog sometimes. If you see a comment from one of them, go ahead & reply. If they don’t see it, I could email them to see if they want to get in touch. Let me know if you want me to try that.

      Pam has moved her blog. I’ll fix the link! She is also very active on Twitter so if you’d like to try Twitter, you could follow her & me there & we could help you find friends. Click here for Pam’s blog link. Click here for Pam’s Twitter link. Click here for my Twitter link.

      Reply
  • April 3, 2011 at 8:27 pm
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    thank you for sharing this! I was diagnosed with JRA when I was 14. It is now 7 years later. I enjoy reading stories of other young women my age.

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  • July 26, 2012 at 1:24 pm
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    I was diagnosed with Juvenile Systemic Arthritis in 1993. I was only 16. I have suffered through the severe pains of inflammation through out my body. I also have uveitis.
    I have a new Rheumatologist who doesn’t think I should call my condition JA because I am now 35. He said, JA can become RA or AS or simply stay as Still’s Disease (JRA) or go away

    Reply
    • July 26, 2012 at 1:30 pm
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      Hi Pricilla, Rheumatologists differ a lot on this. I guess as long as you get good care and treatment, it doesn’t matter much what their perspective is. It does matter for research and we may advocate a more holistic view in the future. And it matters to the majority of families who are told that the children will outgrow it and then do not – so it will of course be good to know more and have better data about kids who get this disease and their outcomes.

      Reply
  • July 16, 2017 at 11:47 pm
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    More answers to questions I have had. My heart breaks for this young lady in not being diagnosed. Hear from more and more people that have negative blood tests but do have RA. My prayers are with her as with all of us who suffer from this disease.

    God Bless You Kelly.

    Reply

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