The Life of a Professional Patient, Blog #4; Continuing to Fight Rheumatoid Arthritis

Kelly at the lab

Obligatory warning: this post is about the author of this blog…

The author

This is the blog post that I didn’t want to write. For about half of those who read this today, this will be the first time you’ve visited the blog. To you: This is not a typical blog post. This blog is about fighting Rheumatoid Arthritis; it’s not about me.

I don’t want to write anything that sounds like complaining. No complaints. I am extremely grateful for most things. The rest I tolerate well.

First, I need to respond to folks who are asking about my own Rheumatoid Arthritis treatment. Although I began the Orencia via IV infusion last month, the rheumatologist told me to expect relief to take at least a couple of months. I was told that Orencia is a slower acting medicine.

The first three doses of Orencia are 2 weeks apart. Then, it is a monthly treatment. However, I have not had my second infusion because of a bad chest cold*. This was the sixth flu / cold in my house this fall. I have not been able to kick it.

The last time I had a severe bug like this, Humira and methotrexate shots were continued throughout. After six weeks, I was treated for pneumonia. So this time, I put my Rheumatoid Arthritis treatments on hold.

I’m coughing hard. It hurts the cervical spine RA (neck).  And since I’ve been off my methotrexate a couple of weeks, guess what else is back? Episodes of breathing difficulty due to Cricoarytenoid Arthritis. It’s a great combination.

The blog

The very first post on this Rheumatoid Arthritis blog was about patience, especially regarding delays in creating the website which I existed in my mind. Although it is still far from complete, Rheumatoid Arthritis Warrior is that website.

It would be difficult to explain how grateful I have been for the readers of this blog. I’m so glad that I have been able to do what I have done so far. I’m not complaining…

Please understand that the blog does not have any staff but me. I work countless hours – gladly. Sometimes, it may take a couple of days to reply to an email or comment. Please contact me to remind me if I miss something important.

I have recently learned that there are some technical problems with the website. It may take a large amount of hours to repair. That could mean posting less frequently.

Behind the scenes

There is so much more to this story… here’s a little of it: I received several pieces of bad news one day last week. I could not stop the coughing. That was also the day that I learned of the technical changes needed for the blog. It all hit me so hard that I considered quitting.

However, numerous events that day assured me that I was on the right path. I wish I could share them all. I was amazed at how God showed me that I was doing the right thing. Then, there were more tears.

Tiny example

Here is one tiny sample that I can share: I received a spam comment from a legitimate email address. Odd. So I sent an email to the woman who owns the address – a total stranger. It was a lark, but I thought maybe she’d like to know what was being done. We exchanged several emails. Turns out her mom had had RA. She took one look at the RA Warrior website and said, “Kelly, you are doing God’s work.”

NOTE: The “bad cold” actually turned out to be bronchitis as a side effect of the Orencia. Read more about the Orencia cough here.

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/

35 thoughts on “The Life of a Professional Patient, Blog #4; Continuing to Fight Rheumatoid Arthritis

  • December 8, 2009 at 7:41 am
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    sometimes we all just need a break but they don’t often come.. or we have gto look hard for them!

    it was nice hearing a little about your personal battle as you are so importan to the awareness. knoing the personbhind the blog is importat to me… its important to know they really are someone who gets it. it’s obvious in yoir posts re others but there is nothing like see4ing you.. what u look like.. whats going on.. it adds more personal connection toeverything else you write.

    i hope this flu/cold. etc gets out of you soon!! people have no idea how difficult the whole issue of immune suppression is and being off vs on arthritis meds…

    i hope orenica brings you some much needed relief. ive met a handfull of people with JRA (aka JIA) who have the arthritis affecting their vocal cords. It was a new one on me when i first learned about it. Amazing how many joint spaces exist for the monstor of arthritis.. more specifically autoimmune arthriis.

    glad you aren’t quitting your blog despite all the bits of problems that come up.. i look forward to reading it even though i have a big pet peeve with the JRA vs RA deliniation. I still find it to be a great way to connect to others and actually RELEVENT unlike things like arthritis today magazine which donothing but frustr4ate me with their superficial articles of people who vaguely have arthritis!

    Take care and please share more of you sometimes!!!

    Reply
  • December 8, 2009 at 7:50 am
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    Sending you big hugs and big love Kelly – you are doing a truly tremendous job and I for one would like to say a big “Thank You”. Your blog is unmissable daily reading for me – I’ve learnt so much. I wish I had one ounce of your wisdom, patience and determination. You know where I am, let me know if there’s anything I can do to help.

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  • December 8, 2009 at 8:46 am
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    Kelly, you really are doing God’s work here. I cannot begin to tell you how much this blog, you, and all the RA’ers I’ve “met” online mean to me. I am so thankful that, if I have to live with this disease, I am doing so in a time where we have such advanced treatments and we have the technology to connect us to a support system we would not have had 20 years ago. I know that we have never actually met, and really haven’t known each other that long, but I truly consider you a friend and I pray for you often! Thank you for all that you do! {{HUGS}} I hope you can kick this flu bug really soon and restart the Orencia. The 2.5 month break I had to take from it has been killer so I know what you’re going through. Hang in there! :heart:

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  • December 8, 2009 at 9:18 am
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    Would you be open to guest bloggers? I bet many of your readers would be happy to send potential posts for you to have on hand for the days when you are not feeling up to posting or need to shift from creating content to working on the technical aspects of the site. I don’t know how it would work logistically, maybe like an essay contest but not really a contest? Since I’ve enjoyed the onset stories, it might be nice to hear others’ voices on additional RA topics once in a while.

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    • December 8, 2009 at 9:52 am
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      Thanks, May.
      Actually, I’ve had several guest posts ( I can see there are 4 now on the tag dropdown – I need to check that – -) and I’ve invited several other people to collaborate with me on something (waiting on them so send me something). The contest idea is good; I too have wondered how it would work – when I get time… Haha. :silly:

      Reply
  • December 8, 2009 at 10:04 am
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    I could feel your pain as I read you post (and saw the photo of your blood draw!) early this morning. I pray that you get well enough to get back on MTX and Orencia very soon. May God give your rest and energy to keep up the wonderful work you do.

    Reply
    • December 9, 2009 at 8:55 am
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      Andrew, it was the rubberband tourniquet tied too tight. Blood draws don’t have to hurt. But I wish more techs were better skilled at it. For sure.

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  • December 8, 2009 at 11:34 am
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    hey kell,u r really doing a good job….
    i can understand the pain u r going through..[as an JRAer]
    hope u get well soon…..after reading ur blog i hv really got so much courage that mah pain is nothing at front of urs….earlier i used to cry out so asily bt now i m becoming more tolerant….

    Reply
  • December 8, 2009 at 12:09 pm
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    Hi Kelly,
    I hope today finds you feeling much better. I also have trouble kicking any kind of upper respiratory issue once it takes hold. I will pray that your body is able to recover soon so that you can fully enjoy the Christmas season. Your blog is excellent and is a source of encouragement for everyone with RA. Blessings to you and yours!

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  • December 8, 2009 at 12:27 pm
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    Hi Kelly,

    Not sure how you manage to do this AND fight your own RA too!! Praying for you that you will feel better soon and feel the medicine working for you. My heart broke for you looking at the picture (Not fun being poked!!) You are an amazing woman and I appreciate the hard work you do.

    Love & Prayers,
    Mer

    Reply
  • December 8, 2009 at 12:55 pm
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    Kelly, you are awesome, I wish I had your strength. You are doing God’s work, so much good can only come through God. I know he would also want you to take time for yourself to relax and heal. Running yourself ragged when you’re sick deprives your body of the rest it needs to fight infection. Also, stress wears down an already compromised immune system. Take time off and heal so you can come back strong and be our warrior. Sleep, rest, listen to good music, drink lots of fluid, do steam treatments with peppermint oil, gargle with warm salt water to reduce inflamed tissues. Sorry, I’m being a mom, but I mean it! ((Hugs)) Let me help if I can.

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  • December 8, 2009 at 12:56 pm
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    Kelly,
    Sometimes your posts encourage me, sometimes they make me cry for what I have lost, or still have to lose, sometimes they make life better for a while. No matter how I feel, I keep coming back. You are the only person I “know” who really knows what this disease is all about and understands all facets of the disease, not just the physical, but the emotional toll too. Your efforts with this website are greatly appreciated, and any technical glitches are quickly forgotten, the content – the true gift – is what we remember, not the packaging and delivery method!

    Reply
  • December 8, 2009 at 2:04 pm
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    Kelly-I just want you to know how much I look forward to your tweets and blogs. You are a great source of information and a wonderful person for sharing with other RAers. Despite your pain, you continue your work so we can learn more about this horrible disease. I pray for you and our fellow RA friends.
    BTW I have an appointment with my rheumy on the 18th and I am going to share your info with her!!!

    Reply
  • December 8, 2009 at 2:24 pm
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    You brought up another idea for a post that I’d like to see as you wrote today. I too struggle with when I need to stop taking my meds until sickness or infection has passed. I hate to get off track, flare and need to start again. I’m off now because youngest has influenza A (although we all had the vaccinations), taking tamiflu and hoping this turns out better than the last time!

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  • December 8, 2009 at 7:28 pm
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    Hi Kelly! New to RA, but I find everything on your site very informative. You are doing such a great job on your site. I have suggested it to friends and family as you answer a lot of questions that sometimes via the web can be misleading. Thanks for being such a great person! You rock!

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  • December 8, 2009 at 7:46 pm
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    Hey Kelly, sure hope you get better soon, you are one very nice lady and so pretty too, gosh how do you stay so slim? Have a super week, Viesta

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  • December 8, 2009 at 7:55 pm
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    Kelly, thanks for writing your blog. You make it very understandable. There is so much info out there and you make it easier to understand. I hope your cough goes away and you feel better soon. I am new to all of this….I am not even sure yet if I have RA…..I am thankful for you writing this website. Keep it up!!! Thank you!
    Sue

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  • December 8, 2009 at 9:42 pm
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    Hi Kelly. Please take the time you need for yourself to heal from all the respiratory infections. I have just finished three meds. and breathing treatments for upper and lower resp. infections. It seems to take forever to get rid of it with RA and its meds. I know that you are in everyone’s prayers and thoughts. You will continue God’s work as He see’s fit! Remember you are a precious gem in a treasure chest full of copper pennies. Know that you are loved by all of us and we are patient people waiting for your new entries. Happy Holidays to you and yours. :heart:

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  • December 8, 2009 at 9:57 pm
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    oh WOW! you are going though a lot and you are Still upbeat and Sweet 😀 I hope you feel better! and Thanks For all you Do! I loved when I found your blog on facebook after I got RA,I thought, I was going to die from the pain. Thanks SO much! -Pamela 😀

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  • December 8, 2009 at 11:42 pm
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    Kelly, I hope you can get over your cold soon.
    You have really done an amazing job. RA Warrior would be an accomplishment for 2 or 3 healthy people running it. The fact that you have done all of this on your own and while fighting off RA just proves the dedication and perseverance that you have inside of you. Thank you.

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  • December 9, 2009 at 1:44 am
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    Kelly, everything happens for a reason. We do not always know what that reason is but we must have faith. You have so mug courage and you are so smart, you are doing G-d’s work. I pray every day that G-d gives you the strength to continue.

    You know if you ever need a listening ear and understanding loving heart that I am always here for you. You are like family to me, G-d brought you into my life for a reason. I will continue to keep you in my thoughts and prayers. Sending you all the best.

    PS if you ever need a guest blog I’d be happy to 🙂

    Reply
  • December 9, 2009 at 6:23 am
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    Hi Kelly, so sorry to hear about your respiratory and other problems. I hope you’re better soon. Smart not to continue infusions while sick.
    I have not had a chance to get into your blog for awhile. My household, as have so many this year, have been dealing with various health setbacks.
    I appreciate the extra care you went to to emphasize that sharing info doesn’t mean your blog becomes a complaint depot.
    Do take care. Feel better very soon.

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  • December 9, 2009 at 9:11 am
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    Thank you to everyone for the well wishes. I’ll be back on track soon I hope. Your encouragement is very valuable to me. :heart: :heart: :heart:

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  • December 9, 2009 at 11:39 pm
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    Kelly,

    Ditto, ditto, and amen to the above comments and well wishes! You are in our prayers. And as much as your website means to us, your health and well-being are much more important. Take good care of yourself. Hope you’re feeling much better soon.

    Blessings, Caysea

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  • April 21, 2010 at 10:38 am
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    Dear Kelly,

    Please, Please continue yyour blog even if you can only write once in a while. You are touching, and helping so many people. My daughter is tweleve years old and was diagnoised with JRA 2 years ago. I have been serching for answers, for a sign for an angel.
    Kelly you are that angel.
    I am not very smart, just got by in school know just about nothing regarding computers. But your blog has helped me and my daughter so much. We have seen so many Drs had so many apts (as I am sure you know how that goes)They all talk above my head I am trying to learn all I can about JRA and I know there are so many types.
    But your post talk to my heart.
    You put info out there so people like me can access it and learn with out felling so stupid.
    You are doing such a wonderful job and if the world was fair you would be blessed beond any thing you could emagine.
    I know you dont know me but your blog gives me and so many others some comfurt, So please please keep up the great job.
    If I had money I would send it, If I had knowlage I would give it. But all I have is my gratietuid (sorry about the spelling) Know that you are in my thoughts and prayers.
    And No matter what you decide regarding your blog you have my undying gratietuid.
    Sincerly Laura
    Mother of a child with this deases.

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    • April 21, 2010 at 10:58 am
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      Dear Laura, the last few months have been pretty hard & I’ve thought of quitting a few times. But I’m still going. Your comment is the best medicine for me in the world. Thank you so much for taking the time. I may print this & put it over my desk to remind me during hard why I keep going. Thank you so much. My best to your daughter. I have children too; it must be so hard for you to see her struggle with JRA. Please let me know if I can help in any way.

      Reply
  • May 17, 2010 at 5:14 pm
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    I have to agree with Laura, you do a great job. I am pretty new to the blog, but when I read your post about morning stiffness, it hit home, and I made your blog a part of my homepage. I wish I had the skills to do what your doing…I have been teaching myself about computers since I got my new computer last summer. I have been thinking about starting a blog myself, but I’ll just have to read yours for now. Maybe when you decide to quit, I’ll be more educated on technology, and can take over the blog lol! OK, I wouldn’t be as good as you… Good luck, keep up the inspiration.

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  • July 30, 2010 at 9:31 pm
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    Hi Kelly: I think that you are doing a wonderful and kind thing sharing and giving all of us RA’ers hope. I have only been diagnosed for about eight months now and have some relief but no remission yet. I’m 59 and have struggled with type 1 diabetes since I was a teenaget. So, when I got this disease it threw me for a loop as I was pretty sure I was managing my other disease. Yesterday I could finally pick up my year old granddaughter for a few minutes. Thank you for keeping me going and for being so brave. I keep reminding myself that diabetes was a terrible blow and yet I am able to live a life better than most with diabetes through keeping up on information over the years. Keep up the good work and thank God for you!

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    • July 31, 2010 at 12:10 am
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      Thank you Di. It requires a lot of education to do well w/ Diabetes doesn’t it? I guess you are used to that part anyway. A lot of work to be a patient w/ both!

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  • December 4, 2010 at 9:09 pm
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    Kelly,
    Have you heard about treatment for RA with low doses of antibiodics? I am currently investigating this and there are Doctors in Columbus, Ohio who specialize in this treatment. They have been doing clinicals for about 15 years now and have had excellent outcomes. Please let me know. Thanks!

    Reply
    • December 9, 2010 at 8:39 am
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      Jackie, I’m very behind. I hope you see this. 🙂 Here’s a link to a post on antibiotics if you didnt find it yet. You can always try the search box at the top or opening up the archives at the bottom – that’s what I do.

      Reply
  • July 26, 2011 at 11:09 pm
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    Hang in there, Kelley. I just found your site and am thrilled to have another person to be able to gain insight from. You are doing God’s work…by sharing your soul….and please know that you are in his prayers and thoughts!

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  • December 18, 2017 at 12:00 am
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    Dear Kelly,
    I absolutely agree with all of these positive comments and greatly admire and appreciate your work. You really understand and provide a place of acceptance and understanding. Please take special care of yourself. I wish you had a Kelly to help you! Your writing has enabled me to understand and integrate the changes in my life due to Rheumatoid Disease. (I was formerly anti-support group, anti-whinge, anti-label, but you really know what you are talking about and you do NOT whinge! You’re very brave and big-hearted.) The past 4 years’ experience since my diagnosis and the information you share has helped clarify my mind on the very complex health issues we face, all of them so individual. Only the knowledge of a wide range of experiences allows one to understand their own and thus accept and better manage their situation. I have not got the necessary tools from any other source. Yours is the “real deal”. It strikes a true note. we need this kind of help from someone who knows at first hand experience. I hope you will soon be on some helpful medication, even though I know it just makes the disease more tolerable for a certain period of time and we don’t get to be free of it. Best of luck!
    Kindest regards,
    Megan Wilson

    Reply
    • December 18, 2017 at 9:49 pm
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      Megan, thank you so much for taking time to write.
      You have touched me deeply. I will read your words over again as i know i will need them to encourage me to press on.

      Reply

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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