Happy Birthday RAW! The Day I Could No Longer Stay Silent
This week the British Medical Journal published my article which they titled: Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. But first, today is a very special day.
Today begins year five of RAW
Four years ago today, RA Warrior was born. I’d been studying, writing, and talking to patients for a few months. But that Sunday, the planning came to an end. No one was more surprised than I was. I just couldn’t wait another moment to break loose and communicate my thoughts. I just had to write.
I couldn’t imagine why there was so much confusion about a serious disease that affects millions of people. Why are people told they are atypical for symptoms that so many encounter? Why do so many people have friends offer them Tylenol or a juice cure or tell them they have a little “Rheumatoid Arthritis” in their knee?
Why was there no Rheumatoid Awareness Day? Why does insurance cover self-injection of insulin, but not methotrexate? Why was there no Rheumatoid Patient Foundation?
Eventually I understood the reason was the impractical label “arthritis.”
It became obvious how unworkable it is to refer to a systemic disease by one of its symptoms: joint inflammation. One issue at a time, I wrote about the disease that people experienced, including numerous subjects that were not being addressed, like cricoarytenoid arthritis (CA) – see my 2009 article on Health Care Professionals Live. Over and over, I hear from patients, “I had NO idea the hoarseness (or choking feeling or painful voice box, or difficulty breathing…) had anything to do with RA. I just try to ignore it because there are so many issues.”
Just today, I read a new study on CA, Laryngeal involvement in rheumatoid arthritis, in a Brazilian otolaryngology journal. It’s not the definitive piece on CA, but it is one more proof that the many patients who say they experience symptoms of CA, without it ever being treated, acknowledged, or recorded in their charts, are not imagining it. And when you read my BMJ article, you’ll see many other topics documented with similar evidence. Evidence that demands we call it Rheumatoid Disease. Evidence that is the basis for my first book (almost finished – I have to regularly stop to work on other projects and answer piles of emails or read to Roo!)
Facing fears – keeping on
Even though I wanted to write, I faced fears in being the first website to write certain things. Often, I had to make up my own words to describe realities only people living with Rheumatoid Disease seemed to know – like the Usage Principle (stay tuned for big news on that in the next couple months). Here’s a brand new word you’ll read in my book: drumroll… PRD, people living with Rheumatoid Disease, as many use PWD for “persons living with diabetes.”
Repeatedly I wrote of things that doctors did not readily acknowledge, and PRD responded in large numbers, “You’re writing about MY life.” Sometimes, a rheumatologist tells patients that RA cannot affect the neck, but then the RA in the spine is treated by a neurosurgeon. Or the same scenario plays out with many other symptoms. And the saddest thing of course is when symptoms are not addressed at all.
Together we are changing that. I can’t tell you how many people have said they’ve become empowered to seek the care they need. And did you notice the title of the BMJ article? They called it “Rheumatoid disease.” We’re hearing it more often now.
In a speech I heard recently, someone said, “What are you afraid of? They are NOT going to EAT you!” I don’t know why it’s so hard, but I’ve overcome it repeatedly, putting myself on the line to say what I know to be true. Two years ago, on the blog’s birthday I realized there were still things I was stating too gently that needed to be said more bluntly, so I began the Frying Pan post series. There is a long way to go with most of those issues, but today let’s wish the blog Happy Birthday and think of how far we’ve come.
Postblog: Today I packed my suitcase for the Gathering, in Phoenix this year. Saturday I’ll be speaking on “The Extreme Sport of Fighting RA.” My vocal cords have been very sore the past couple months, but I still can’t wait. There will be so many laughs and hugs. Last time I flew to Phoenix my knees didn’t straighten for 5 months – it’s worth it, but this time I won’t sit hours in ridiculous chairs, and I’ll be more empowered to stand up a couple of times during the flight.
Click here to listen to my audio interview with British Medical Journal last month.
Recommended reading
- How Many People Have Rheumatoid Arthritis?
- Rheumatoid Arthritis Swelling, Take Two
- 2 Reasons Monitoring Rheumatoid Arthritis Matters
- Poll Shows Textbooks Wrong on Rheumatoid Arthritis Morning Stiffness
- The Powerful Health Care Role No One Really Wants: Being a Patient
- What about a Clinical Protocol for Rheumatoid Arthritis Disease?
Happy Birthday, Rheumatoid Arthritis Warrior (Kelly!)—and special hugs and many thanks for all that you have accomplished and all you will accomplish as you continue your support of all those in need! Hope you have a comfortable and successful trip to Arizona….we’ll all be with you in spirit!
rawarrior Happy BirthDay RAW and thank you from the bottom of my heart for everything you do Kelly. #Rheum
Kelly, my RAW hero!
Professional voice advice as a Speech-Language Pathologist:
*ALWAYS hydrate (with lots of water)
*no caffeine
*voice rest until your speech (speak as little as possible and keep your voice in a very comfortable range with an easy onset… think like you are starting your speaking with a soft breath of “ha”)
*no laughing, crying, yelling, groaning, grunting, coughing or throat clearing!!!!!
*get attention by clapping or whistling
*try to use a humidifier or breathe in steamy air by running a hot shower and sitting in the bathroom before your talk
*avoid reflux (medicate if you tend to have it)
*Use the microphone so you can speak softly and be heard
*no stage whisper, just a soft voice with easy onset
Hope that helps. I’d usually charge a good bit for that, but since you are my hero, it’s yours for free. 🙂
I like the term “rheumatoid disease” because it speaks to the systemic effects of arthritis. I still have people not believe me or think I’m a hypochondriac about that, or that other symptoms are unrelated. I also like the term “inflammatory arthritis” because it makes it clear that RA, spondyloarthropathy/spondylitis, lupus, etc. are not just orthopedic. I wish there were some way to convey both together. Many (most?) of the symptoms of RA, including neck involvement and other organ involvement, are similar to those experienced by women with spondy (they tend to be more atypical than men), so I’ve also observed some doctors not understanding the systemic totality of it.
I’ve always seen “PWD” used to represent people with disabilities, which includes people with moderate to severe RA; I will have to make sure I recognize when people mean diabetes instead.
Your contribution, is incalculable, because you can’t quantify, hope, understanding companionship, knowledge and a fierce fight for whats’ right.
In Gratitude,
Kathryn Damron
HAPPY BIRTHDAY RA WARRIOR!!! You are a true warrior for all of us. Thank you so much for everything you do. You are the absolute BEST!!! May you have many more years and may the battle end with you the victor. Love Ya Kelly! 🙂
Happy happy birthday RAW. Congratulations for all of the accomplishments to date and for all the triumphs to come.
I love what Kathryn just wrote. I agree that without RAW and Kelly’s work, our lives would not be as good as they are living with Rheumatoid Disease.
I am happy to see the discussion of terms used to discuss the disease on this post. I am also a speech-language pathologist and have worked in special education for 30 + years. We have learned the importance of person-first language to describe people with varying conditions. I also appreciate the labels that more accurately capture the systemic nature of rheumatoid disease. I would love to see us drop the term “patient” altogether. We are PEOPLE diagnosed with rheumatoid disease.
*A side-note of appreciation for the voice tips by Lisa for Kelly*. I’m also suffering from symptoms affecting the throat, swallowing, and voice. It is incredible to me to be questioned when I report these symptoms given my training but it happens.
I think the most valuable gift of RAW for me personally is the feeling of empowerment. This comes from the research information shared, but more importantly, from the tremendous sense of validation from the very similar experiences thousands of us report. With more than 20,000 people on Kelly’s FB page, there’s no way to ignore this collective voice.
Here’s to many more years of progress with collaborative voices fighting this disease *cheers*
I feel that taking the “Arthritis” out of the name Rheumatoid Arthritis would help with awareness. I do not suffer from this disease but when I first heard from a friend about all her suffering and issues related to this disease, it made me realize it was much worse that arthritis in a joint. Doctors and the public need to be aware of this. This is a great blog to spread the word.
Congratulations on four years. The amount of information you have presented is staggering, and the responses and comments enrich the original posts immeasurably. I wonder how many, if any, rheumatologists ever read what’s on this site. Maybe they should offer continuing ed credits to MDs who can prove they actually read things here!
Congratulations, also, on having an article published in BMJ. I hope this will help raise the visibility and credibility of this website, leading more professionals to learn from what is here. Brava!
Happy BD, RAW–so deeply grateful for this site and all the support you provide to fellow warriors! I’m also looking forward to meeting you @ the AI conference. See you soon!
Happy Birthday RAW (Kelly), you are an inspiration to us all, always advocating and spreading awareness of Rheumatoid Disease. From all your efforts you have managed to bring RD to the forefront. I applaud you for all your tireless work now and in the future. You have my upmost gratitude.
Sincerely,
Penny
Unbelievable…I’ve had hoarseness (off and on) and a choking sensation for around 4 years…never gave it much thought. I’m learning so much here. I
I just started a list of my symptoms and about how long they’ve been going on…I’ll be taking that in for my next appointment.
You are incredible! Thank you so much for having this blog. I have learned so much about my body and what this disease is doing to it. Thank you.
Kelly, Thank you for the RAW site. I cannot imagine the amount of work you put into this site. I love RAW. I have had RA for 43 years and have NEVER found anything as comforting as RAW. God bless you.
Happy Birthday RA Warrior,
Thank you for all the insight and encouragement you have given me. My wife has had RD for two years and the only place I go to learn and understand what she is going through is here. Because of you and everyone who expresses their experiences, encouragement, love and information, I have been able to help when I can and feel their is hope that my loving bride of nine years will be around for a long time. Everyone here has given me peace and the knowledge on how to take care of her and give her comfort. This site is not just for people with RD, it is also for the husbands, wifes and family members. Thank you for everything you do and may GOD continue to use you to educate and give peace within every person in the world who has RD.
Happy birthday, RAW!! I’ve learned so much here — why my former smooth honey-drippin’ voice is now a whiskey voice, why I had trouble swallowing my pills this morning, why my joints swell and get hot and hurt and then it goes away….
And that rheumatologists aren’t always the best people to diagnose us!
And I agree — it should be Rheumatoid DISEASE, drop the “arthritis” part altogether. All anyone hears when you say “rheumatoid arthritis” is the ARTHRITIS part, and then they start telling you about their osteoarthritis woes and how it can be cured with [insert quack cure here].
Happy Belated Birthday RAW & kudos to you Kelly.
Hoped all went well at Arizona….
Hugs & prayers always,
Jacqui :D)
You are to be applauded for the great work you have accomplished in bringing attention to Rheumatoid Disease. It proves without question the power of one person when the mission is clearly defined and empowerd with determination. I was one of those silenced by a medical profession who would not listen to my concerns and easily dismissed my symptoms (ex. vocal chords). I managed through each day and tried to pretend nothing was wrong – simply in denial, thinking it’s just “arthritis.” Something changed when I found RAW – it confirmed there were others just like me and ignited a desire to learn and share more. You taking a stand and speaking out has empowered others to the same.
I read the BMJ article after seeing it on twitter. I hope physicians take the time to read it. I also hope those who have or know someone who has rheumatoid disease will support RPF. You have done a stellar job representing us. We need to strengthen the forces and build on the foundation you have established.
Happy Birthday, Rheumatoid Arthritis Warrior. You are our ambassador, Kelly! Thank you.
Well wishes as you head into your 5th year! Way to go on the British journal article!
Andrew
Happy Birthday RAW! Kelly, thank you for the safe place that you have created for us to learn while being supported. The work you have done is incredible. God Bless you.
Kristina
Kelly – Happy Birthday!! – wish I could have joined the group in AZ – I just wanted you to know you have been a life saver for me and I refer everyone I encounter w/ RA to your site. thank you for all your determination and hard work and for giving us all a place to come so we dont feel alone. Big giant hug!
thanks Kelly. Big hug back to you!
Happy Birthday! Thank you so much for all you do! You are an inspiration. Thanks to your urging that we keep looking until we find the right MD and articles about what treatment can mean my life is so much better now. I went form someone who struggle to get up stairs and was in pain every single day to someone who works out every day and gets at least 5 miles in. Thanks for letting me know my feelings and struggles are normal and for telling us not to feel guilty! You Rock!
Just checking in. Has anyone heard from Kelly? No new blogs,miss hearing from you folks. Hope you are well, just busy doing something fun with the kids.
Hugs, Pat
Isn’t it amazing how Kelly has become so much a part of our lives that we worry about her as we do our own family members! I, too, was just about to jot her a note now, just to check in to see how she is doing. As we all know, though, Kelly, too, has a family and has to deal with their needs, as well as her own RA issues, while trying to keep up with the latest RA research in general! Wish we could clone her–imagine how many advances in RA could take place if there were 10 Kelly Youngs! Ah….we wish, we wish! (:
Thinking of you Vi. Got a little note from Kaitlyn in the mail last week. 🙂
Pat, I was thinking the same thing.
Kelly, if you are able, please add a comment telling us if you are ok. Every time I read some of your personal story – the pain, the fatigue – I worry that you pour so much energy into this magnificent site and your other endeavours that you will leave nothing for yourself, that you will deplete your resources to help others. Now you have disappeared. You do NOT need to write a blog post – just let us know whether or not you are ok.And it is OK to say, “I am not okay and taking a break!”
Hi Evie. It has been a rough few weeks, but I am ok. I have replied to just a few comments here on the blog or emails, but I have also gotten very behind.
I appreciate your words more than you can know – I don’t feel that I really have much resources to deplete – most of the time I’m struggling. But I think many of us do that, and we just try to not complain. Thank you so much for your concern.
Glad you’re relatively OK, Kelly, but not glad that you had a rough few weeks. If there’s one thing that all Warriors will agree upon, it’s that we all love you and want you to feel better ASAP–not just because we need you, but because you are such a good,caring person!! Wish we had a magic wand to “fix” all the ailments and complications and miscellaneous difficulties, but, unfortunately, it’s not that easy! Now…. I was going to put a “sad” face here, but I’d rather put a happy, smiley face to continue our philosophy that tomorrow will be a better day!! (: (:
Dear Kelly,
As a husband who tries to help my wife who has RD, I find that I am helpless. I ask how she is doing and replies I am ok. I know she thinks she is complaining and dose not want me to worry but my heart is broken knowing I can not help her to feel better and wish she can take it easy and take care of herself when she goes through rough times. I am saying this because you are family to us and we always worry about you. Please take care of yourself and “complain” as much as you want. Everyone understands and would help if they could through prayer or just an hear.
Hello everybody: I am a new RA patient living in Ontario Canada. I have been very fortunate to have a great rheumatologist but getting in to see him was difficult. In Ontario we need a referral from our family physician and my fam. doc. is terrible. To this day he still doesn`t believe I have RA. I have just been started on Cimzia (so far so good) and I also take Sulfasalazine, Plaquenil, and I am trying once again to reduce the Prednisone from 7.5 down to nil, haven`t been sucessful yes without having a nasty flare. Thank you Kelly for all that you do for us. I have a fantastic husband who is emphathetic and very understanding and our kids have left the nest. Some days it is all I can do to have a shower and take my dogs out to do their `business`. I realize I am very fortunate because we do not pay for our doctor visits and I see my rheumatologist every 8 weeks. We have benefits so I don`t pay for my meds, just the dispensing fee. This site is absolutely EXCELLENT and I get great understanding from reading it. Thank you everybody for all your contributions and mostly, thank you to Kelly.
Kelly – thank you so much for starting this site and for leading the fight for us. You had more information for me when I was newly diagnosed that any other source. I am eternally grateful. May continued success be yours. And have a pain-free day!
Thanks for writing this great blog. Pretty much everything you talk about can be applied to ankylosing spondylitis – including the odd things that rheumys don’t address, like painful, locked jaw joints. The one major difference is the concentration of inflammation in the spine, but people with RA can certainly have spinal involvement. What the rheumys typically don’t discuss is that AS can involve the whole body. I used to get infusions alongside people with RA and the main difference was their visible deformation of the finger joints (which I have a little of), vs my spinal bone deformations (not yet fused, though). All of us with these similar autoimmune diseases – RA, AS and PsA – benefit when we share info and fight the good fight together. Thanks, Warrior!
Thank you so much for all your help . I thought I was alone and noone believed me . But I find knowing I’m not alone and you are out there fighting for all of us. Gives me hope thanks so much for helping me understand my r.a