Dear Warriors and Friends | Rheumatoid Arthritis Warrior

Dear Warriors and Friends

Kelly and KatieBeth at Houston G5The past three years are positively beyond anything I could have imagined. Do you have a moment?

When I started blogging, I had dreams of this website. But it could take forever to learn enough about “code” to manage it…

We’ll save the rest for another day, but do you realize rawarrior.com has at least 630 pages? We have come SO far! Almost all of it has been created by me with trial and error and with my lovely assistant, Katie Beth (now almost 20).

How many times we were up half the night trying to fix the “broken” website? I’m trying not to remember.

We’ve been so busy passing milestones that we spend little time celebrating them! I read an article this weekend by an authority about how to blog. (I was searching for answers to why the website crashed, but more on that in a moment…) The writer said to spend 20 percent of your time writing and the other 80 percent of the time promoting your content. How else would anyone know about it? If you work for hours or days on an article, you want it to be read, right?

This is one of the things I seem to #fail at all the time. Ack! I probably spend 20 minutes promoting for every 800 hours writing. So people don’t realize all that I’m doing. Even regular readers say:

Um, yeah.

Why think about these things today?

  • We passed 100 RA Onset Stories recently! To read 12 new stories, start at the bottom of this page – click here! And there are many more waiting in my laptop.
  • The website has been crashing the past week and we’ve fixed everything we can find. Our server says rawarrior.com is just too big and needs to buy more space. Again.
  • About once a year, we make changes to the website so things are faster or easier to find. As I’m able, it’s that time again. It may take a while since I have to fit it in with other things.

Finally, I want to respond to “Don’t you have time to…?” questions. It probably deserves a whole post. But I really don’t have time. I just know I’m working harder than I can remember. Anyone know where to find the other 80% of time the expert thinks we have?

Y’know, I truly enjoy my children at every stage, including those few glorious weeks when I had FOUR teenagers! In the same way, the website goes through growing pains, but it’s still home. Um, yeah.

Love,
Kelly

PS: Are you signed up to get the newsletter? It’s kind of a monthly answer to “What have you been up to, Kel?” where I highlight a few don’t miss things.

Very important recent posts you may have missed while we were crashing:

Edit: 8 a.m. 4/9/12. Added photo and link to rheum4us.org.

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/

10 thoughts on “Dear Warriors and Friends

  • April 9, 2012 at 10:50 am
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    Congratulations on your achievements Kelly, and as always, thanks for everything you do for our community!

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  • April 10, 2012 at 2:30 am
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    rawarrior quick question, can arthritis affect your back? i think mine has, feels like a trapped nerve in the lower back?

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  • April 10, 2012 at 9:20 am
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    My family comes to your site now and have found this to be the top spot for information.Thank you for your hard work, for sharing your firsthand knowledge of this disease,and for the many hours you put into it while fighting the RA battle yourself.

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    • April 10, 2012 at 10:09 am
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      THANK YOU TISH!! Family members reading will be one of the ways we will change the world …with just telling our stories here!!

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  • April 10, 2012 at 3:43 pm
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    I’ve said it before and I’ll say it again…….I can honestly say I have learned more about my disease from you Kelly (and all the other Warriors) than ANY Doctor I have ever been to…..your hard work is so appreciated, I don’t know what I would have done without it….Thank you….thank your family and I understand what you mean about the frustration of managing a site like this…..it’s an incredible amount of work….you do it well Lady!!!….I tell my Doctor’s ….point blank….”if you want to know more about what I go through….put down your medical books and check out RA Warrior.com…you might learn something new…..ya…..I’m a little outspoken…lol…thanks Kelly.

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  • April 10, 2012 at 9:34 pm
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    Kelly, it amazes me how much you do for the rest of us, you are truly an angel. So is Katie Beth, what a great example of a selfless teenager. Others could learn a thing or two from her!

    I depend on my family as well, my daughter and grand daughter. Don’t know what I would do without them. And I depend on this site for information and for validation. Because of you, I know I’m not crazy! I’ll never forget not being able to brush my teeth, thought what on earth could be wrong with my body. My hand isn’t broken, neither is my arm, why can’t I get my hand to move the brush up and down. Pick up a glass, no…..turn a door knob, no….brush my hair, …are you joking??? No one could get this without living it. Thank you so much from the bottom of my heart.

    Reply
  • April 11, 2012 at 8:06 am
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    Thanks Kelly for all you have done and still continue to do. Thought? (and I’m not a computer/website guy)Would there be any benefit to separating the current RAWarrior site into two sites? Like one for all of the information and blog posts and another dedicated solely to the onset stories. One could be RAWarrior.com and the other RAWarriorvoices.com. Just a thought, but I don’t know if it’s feasible or if it would make life easier or more difficult. Blessings.

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  • December 19, 2013 at 2:13 am
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    Kelly and Katie Beth,
    I’ve had RA for a year now and I’m. 71yrs.old. I have been reading your site for the past year. Its hard to explain how you and all the stories have helped me cope with this disease. I’m a retired nurse and had no understanding of how RA affected people. The flares are so painful, the stories helped me more than anything. I am so grateful for this site. Thanks,Sandy

    Reply
  • October 19, 2014 at 3:19 am
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    Thank you thank you thank you! I know now that I am not alone. It is so reassuring to find out about all the things my consultant didn’t bother telling me or dismissed as nothing to do with R/A.I live in England and have a fantastic rhuemy nurse who seems to know more than my consultant! However I am still grateful to her as I have now had a ct scan and pulmonary lung test done after having breathing problems for a long time now. My philosophy has always been that there is always someone worse off than you and it always stands true. We really are luckier than a lot of people it’s just that we don’t always know who they are. Thanks again Kelly and all my lovely new R/A friends for all the help you are giving me just by reading your posts. Sent with lots of love for you all. Lynn

    Reply

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