Some Answers for Rheumatoid Arthritis Just Bring More Questions

confusion sign

If stress weakens my immune system, why doesn’t that cure me?

And other weird questions about RA no one will answer…

Many people advise me to avoid stress since it can weaken the immune system. I’m sorry, but there’s just something funny about that. I’ve been sort of afraid to ask, but don’t I WANT my immune system weaker? Don’t I take meds to knock it to its knees? Doesn’t that make stress my friend? If I could just get enough stress, wouldn’t I be cured?

Some of these RA questions just beg to be asked

They are just too embarrassing to say out loud.  Why do medicines for Rheumatoid Arthritis have to make you feel lethargic and gain wait?  We can barely move around already. Why can’t treatments for Rheumatoid Arthritis make you lose weight and have more energy like the ones for ADHD?

Here is a really tough one

When I say, “I CAN’T,” why does everyone hear something different? There must be something wrong with the reception. People hear, “I don’t want to.”

Listen, I do not even mean to say, “Well, I would do that, but it would hurt.” I REALLY mean, “I CAN’T do that right now.” I should probably just say it louder. That works with the TV when the reception is bad, right? Just turn it up.

I have more questions about living with Rheumatoid Arthritis

If rest is so good for me, why does it make me so stiff? How am I supposed to sit down and rest when my knees and hips don’t want to bend?  If we have made so much progress in the world, how come shoes were custom made to fit in the pioneer days, but there are so few to accommodate Rheumatoid Arthritis?

Another: And why am I told to protect my joints on one page of a “living with Rheumatoid Arthritis” book. And then on a different page of the same book, I am encouraged to exercise using those same joints. Why is the exact same motion considered to be dangerous in one context, but healthy in another context?

More ironic questions: Why do people think if you have Rheumatoid Arthritis, moving to Florida will cure it? (I live in Florida; No go.) Why do people tell us “No pain, no gain”? What are we supposed to gain from pain anyway?

And here’s one: Since there are so many cures for RA on the internet, why doesn’t my doctor know how to cure me yet?

I would like to take a vacation someday. I hope it won’t reduce my stress so much that it would increase my immune activity. That’d be bad for my RA – and really stressful.

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/

29 thoughts on “Some Answers for Rheumatoid Arthritis Just Bring More Questions

  • September 1, 2009 at 11:33 am
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    Why doesn’t methotrexate cause hair loss on my legs instead of just my head?

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  • September 1, 2009 at 1:50 pm
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    Great questions. Why does my doctor tell me that combination treatment can lead to remission and I still can’t get my current med plan to work? And does remission with RA actually exist or is it just some ploy for us to pay for useless meds?

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  • September 1, 2009 at 1:59 pm
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    LILI!!!
    Are you reading my mind?
    Remission is tomorrow’s post!
    great minds…

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  • September 1, 2009 at 2:06 pm
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    I love your blog it made me laugh out loud, so true and you put such a great spin on it good job, love it !

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  • September 1, 2009 at 4:50 pm
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    This is hilarious!!! I want to print this out and show my rheumatologist!!
    Sometimes I think remission is all in your head!!

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  • October 27, 2009 at 4:03 am
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    I found a link to your blog and have found the info you provide quite helpful. Pretty funny too.

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  • October 27, 2009 at 10:16 am
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    MW, MA, Fred:
    Thank you for laughing with me! That is one purpose of this blog… 😛

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  • December 31, 2009 at 5:35 am
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    Very funny!! Off topic, but it reminds me of one I heard the other day, a variation on the philosophical question: “If a tree falls down in a forest and there’s no one around, does it make a noise?”

    The variation I heard in an TEDTalk by Ken Robinson is: “If a man speaks his mind in a forest and no woman hears him, is he still wrong?”

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    • December 31, 2009 at 9:13 am
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      I am not touching that one. We are so glad we have male RA’ers and docs in our group… 😎

      I was also wondering whether since a tree falls in the forest and makes no noise; if I have pain and no one believes in it, does it really hurt? Not quite as funny though. Too close to home. :razzmad:

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  • January 3, 2010 at 12:01 am
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    Kelly Young, thank you for starting my new year off the right way..I just found this website and I feel like I am home….To you and all the wonderful people here, Thank You for getting it..It has been a long time since someone has understood…I look forward to sharing and listening with all of you.

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    • January 4, 2010 at 8:36 am
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      Welcome, Patti. It is great when you figure out you are not alone. I am often helped by what others write here too.

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  • February 14, 2010 at 2:17 pm
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    Ok im totaly angry now.. I take a bunch of meds my fav being the prednisone cause it does make you feel “happyier” and more speedy but the food cravings and the eating packing on 30 pounds in 3 months.. wtf is that about?? its kinda like speed why cant we lloose weight like the speed freeeks and feel good too?? not fair..

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  • March 28, 2010 at 1:22 pm
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    A few more…

    * [This week] I had joint replacement on my 4 main knuckles in Nov. One joint is permanently crooked and sticks up. My question: Why does the jewelry think he needs to give me a lesson on physics and my Silver Ring Splint when all I wanted was it bent a hair so it would be more comfortable? He kept wadding up his paper to say, “when I push down here, it pops up here” like I was 4 years old. After 4 new fingers and months of therapy I think I know what my fingers/ring need, not him. (His attitude wasn’t necessary.) I said “That would be true for YOUR fingers. My fingers now have silicone. What you see is what it is. It’s not going to ‘get better’. I’m supposed to wear this the rest of my life. I just want it slightly more comfortable.” Grrr

    * Why, when you have joints replaced, everyone thinks the pain is all gone now that the joints aren’t real? Uh, no. I have a DIFFERENT hand, but not a NEW hand. My fingers are nice and straight but they don’t bend much.

    * Why does the Arthritis Magazine nearly always feature people who have “overcome” their arthritis and done physical things like marathons, instead of focusing on those who have adapted to their illness and still become successful with their brain?

    * Why when you have a surgery do people say, “So this will be your last one now?” (Uh, no. . . I am trying to only ave 1-2 a year) RA doesn’t get better after 16 years. Now I just try to keep up with the damage (and my 7 year old son!)

    * When trying to get pregnant while having RA, and off methotrexate, everyone assures you “it will happen” once you relax and go back on your meds– which is exactly what you DONT want?

    * Why does the doctor insist on putting you on blood pressure meds, when it’s only high when you visit HER? (but not all of the other doctors…) Mine is high only when I visit her because I am actually SICK with a cold. And if you have a stripe of bruise around your arm by the time the doctor gets to the exam room, could the fact that the nurse nearly had you on the floor with pain from the cuff tightness have anything to do with your BP reading high?

    * No, MRIs, etc. –anything with a tube you slide into– are NOT “no a big deal.” When your shoulders are permanently out of place and you’ve not been able to lay on your back in years without pillows all around you, and they tell you to lay on a 2×4 for 18 minutes and not MOVE, it’s pretty painful. Just did this again for a nuclear stress test and had a Charley horse in my shoulders quivering most the time. Not fun.

    Thanks for letting me vent. Love your blog and humor!

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    • March 28, 2010 at 1:55 pm
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      Thanks for venting Lisa. It was good to hear your voice. :highfive:

      I will comment on the MRI part. I had to really let go of my own anger before I could write my funny MRI post. They really don’t seem to have any idea what RA is and pull and shove and demand you get into position. I was in the tube for well over an hour then had to do so more if it a few months later. Every time, they seem so impatient when I say, “I’ll do whatever you want. I’m just slow.” Then, when I cannot get up quickly afterwards, they roll their eyes…

      Lisa, educating the medical professionals is one of my goals. I’ve also had lab techs and nurses be very rough with me as you describe. I leave bruised like you. We need to educate. That cannot be done while the magazines do as you describe.

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      • March 29, 2010 at 12:26 pm
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        MRI’s used to be horrible for me until I met an MRI tech at Church! I am now treated with respect and gentleness,his wife would give it to him bad if not lol. He is also attempting to teach his fellow techs to be more careful with RAers and others with invisible diseases. He said that most techs are not knowledgeable unless we inform them right away about our pain. God Bless

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  • March 28, 2010 at 6:20 pm
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    Insensitivity is the watchword. So many people, friends, doctors, family members just don’t understand. It’s too bad that there wasn’t a “hollosuite” (Star Trek term) for those who really need to be exposed to what RA really feels like.

    I think once a person could actually have a minute or two to “feel” what we all endure, then they would never doubt us again. That being said, however, i wouldn’t wish this kind of pain on my worst enemy much less any other person on the planet.

    Sorry it’s been a while since I have posted, Kelly, but the last two weeks I spent trying to recover from a nasty bout of Bronchitis. Fortunately I have survived and am feeling very well and feisty.

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    • March 28, 2010 at 6:55 pm
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      Hi Michelle,

      Glad you’re better. & Happy you feel fiesty. :soldier:

      Oh, what a great analogy. I wish that thing were real. I saw ever Star Trek episode 5 times. I’m not cruel, but I could bring myself to expose most medical professionals to it for a few moments for the reasons you state, knowing it is reversible of course.

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  • April 13, 2010 at 3:17 pm
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    I just want to add a voice of hope in here… there is such a thing as remission. I was in it one time a long time ago. I don’t even remember when. It lasted a good while – maybe a year or so. I think it was in the late ’90s.(Does it count as remission if you’re still taking the meds?) Anywho – I’m working to get back to that happy place! Good luck to all of you!

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  • July 4, 2010 at 10:08 am
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    Hahaha, this had me in stitches laughing! <3

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  • December 28, 2010 at 12:08 pm
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    Hysterically TRUE!!

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  • June 9, 2011 at 9:53 am
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    Im so glad to come across this site, i was just told i have ra , and aam not one bit happy, my mom had it horrible for yrs. and my best friend, the pain is horrible, helps to talk to others who have it, right now i feel like the end of the wold is here, ill fight it all the way though!

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    • June 9, 2011 at 4:45 pm
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      Welcome Vicki. I’m sorry that RA brought you here, but you sound like a wonderful warrior.

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  • November 11, 2012 at 9:13 pm
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    NOw that is funny, thanks for the laugh

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  • January 9, 2013 at 6:03 pm
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    Hi I am trying to just take the Plaquinil and sulfer drug and hope to not have to take the M one. Still can’t do much art as on now but the pain has almost gone away!
    Deb Wilden

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  • February 12, 2014 at 8:05 am
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    Thanks for this blog and this particularly humorous page! I actually LOL’d! So many thoughts running through my head around now!

    I do appreciate I’m so lucky compared to many people. .. my artificial MCP joints (“installed” in 2012!) are quite flexible and 95% pain free and my meds do have things largely under control (most of the time) but I have a couple of questions if anyone can answer please…

    What is a “biologic” drug? I see this term on several posts but have never heard it used here in England. I take 22.5mg Methotrexate and 25mg folic acid each week, plus 400mg Plaquenil & 600mg etodolac daily. Are any of these ‘biologic’?

    Really love your humour and kindness. Look forward to wading my way through so-far unread pages in due course!

    Thanks.
    Sally

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    • December 6, 2015 at 4:25 pm
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      No, those are DMARDs (disease modifying anti-rheumatic drugs). Biologics were created from living cells – not chemicals so that’s why they are a different class of drugs (in simplistic terms). There are several articles here on biologics – click where the arrow is on teh right of the page where it says “Tags – list of topics” http://www.rawarrior.com/tag/biologics-for-ra/

      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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