RA Reality Versus “The Lie” | Rheumatoid Arthritis Warrior

RA Reality Versus “The Lie”

When everything looks normal but it’s all wrong

empty swingCountless times I’ve said that I would gladly be wrong about RA. I’d gladly be delusional instead of this sick. I often say “If only I actually were crazy. Then, I could take medication and at least believe I felt better.” Of course it’s a facetious remark, but it’s also a reference to this notion I have about what’s real and what’s not with RA. We live with this real RA that brings pain, fatigue and fever, damage and disability; but on the outside, things can look fine.

All around me, life goes on as normal. In the midst of seeming normalcy, I can’t walk properly or open a car door or whatever. It’s frustrating. Or I look down at the toes that I feel pulling and there’s no rubber bands on them. Or at the ankle that’s being stabbed. And there’s no blood. Nothing to see. When my shoulder won’t move an inch from my side for two weeks, an ER doc says it’s perfectly fine because he can’t see anything.

This is how it it’s been for five years all day, every day. Every joint. But, it’s all only my reality. No one lives it but me. Do you know what I mean?

One of the first difficult things when all this (unrelenting RA) started was the way people look at you when you claim you can’t do something. I couldn’t hold an iron or a soap bottle any more – and at times even a cup of coffee. Even if I asked them not to, people handed me heavy things and looked incredulous if I said I can’t hold that. It’s just hard for the mind to overcome what the eyes see.

In the privacy of my house, when I’m frustrated, I call the normal façade of RA “The Lie.” I say, “If only The Lie were true. If only I could find the door into that reality.” It seems like the whole world has the benefit of The Lie, except those who are stuck in RA-reality land.

Even I have been fooled by The Lie as I tried to find the door back into the normal world. With enough medication and rest, I get fooled into thinking that my shoulder or knees are doing better. RA is not that bad.

Go ahead and laugh at me if it makes you smile. Just the other day I was lying on the sofa thinking, “Oh, my knees are fine now” until I tried to walk to the bathroom.

RA pain won’t yield to the “The Lie”

I’m very tired of pain. I imagine that those around me are just as tired of hearing of it. I can’t say it out loud or write it out loud every time I’m typing. There are so many topics I want to write posts about that I have long lists of them! But am I the only one who feels frustrated by others assuming that the RA is only bad when I say so?

I know that we are not all in the same place. Many readers don’t even have RA themselves. I try to tell enough of what I deal with to help paint a true picture, but not more than people can handle. Hopefully, it’s sufficient that the world will at least begin to doubt the “The Lie.”

Postblog: Back in May, I was offline for a week because my computer caught a virus. This time it was my turn. Our house was full of fevers, sick stomachs, and the headache from hell. I passed some miserable days when I couldn’t get down any food or meds to mask the RA. I absolutely hate it when so many joints are screaming that you can’t do anything, even read. I doubt I’ll ever catch up on emails and or anything else, but I’ll do my best.

Recommended reading

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/

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116 thoughts on “RA Reality Versus “The Lie”

  • July 26, 2011 at 3:43 pm
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    I am so glad I found your website. I have had RA for 22 years now and have had surgery on both feet, knees, and artifical joints on my right hand. Currently, I take no medication, actually haven’t for 2 years when my cobra ran out and no one would insure me. It has been a rough road to say the least. Motrin is my best friend now. I continue to fight at every step and have dealt with it pretty good. What I have a hard tie dealing with is my family. My mother is 89 now and she gets around better than me and of course wants to do and make things better. However, she hasn’t made much of an effort to read up on RA and how it effects me. She hasn’t changed things in her home that would enable me to be more indepedent while visiting. Such as, an electric can opener,bottle openers, straight door knobs, a chair that I can get out of with ease, hell I would be ok with just some firm pillows to sit on. It’s find that she she hasn’t done any of the above,but don’t ask me to visit just to be miserable. As it is I have to pack all the things I need to be comfortable to visit her and my two adult boys. My kids lived with me fro the onset…now married and have families they both know my limitations, they are always asking my help with the kids, pets, and house sitting. Neither one has made their homes RA friendly. But are now getting mad when I say I can’t do it. My gosh friends and family see me struggling just to survive and yet will ask me to pick up something for them on the way…and it’s usually at a mega store! I just don’t get it. As long as I’m walking and talking there is no problem to them, that is the lie.

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    • July 26, 2011 at 4:31 pm
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      Nice to meet you, Trish. You explained it so well – those are just the things I was thinking of 21/2 yrs ago when I started this. I remember saying how we jsut wish people could have realistic expectations. you wouldn’t hand an ax to someone w/ a broken arm & ask them to chop wood for you. This is similar. We want to do as much as we can, but we have to adapt some & it’s harder when others won’t realize a little adapting could go a long way. Hopefully, we can make progress w/that.

      I understand about the motrin. I’m never w/out mine either. Tried other nsaids that did nothing for my RA.

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  • July 29, 2011 at 7:29 pm
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    I live the lie every day and always have, i dont want people to know there is anything wrong with me so i struggle to walk without a limp, and struggle to cut my own meat, pick up a glass, stand up properly after sitting for a while and i hate stairs or steps because i cant fool anybody when i cant go up or down without a hand rail and its 2 feet on one step,muttering about my pain with every one.
    I havent worked for nearly 2 years now partly ra and partly depression…i worked a heavy job did 36 hours a week and never had time off due tomy ra…i pushed myself so far i had to give up the job i loved. I would get home sit down and not be able to get up again, stiffening up and being in terrible pain.
    I wont take my stick out, and struggled round a monkey sanctuary recently making myself ill because i wouldnt be seen dead in a wheel chair.
    Why cant i just accept i have an illness, embrace it and let people see the real me, the pain im in and accepting i need help.
    xx tina

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    • July 30, 2011 at 9:39 am
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      why? probably because it’s our nature to fight to do as much as we can. It’s a very hard balance to find what is “too much” & what has to be given up or done differently or done with help… You’re right that acceptance is needed – from ourselves & others.
      Ideally, we should have the help & respect/permission to be able to do as much as we can & be satisfied with that.

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  • August 13, 2011 at 10:58 pm
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    As I went to the bi-annual consignment sale today, I was happy to find my son’s entire winter wardrobe, but really sad to see that most of his size had been hung on the top rack. “This is ridiculous,” I thought to myself, “that the simple act of holding my arm up in the air and moving clothes along a clothes rod should hurt so much that I have to take multiple breaks.”

    Or that I only made 3 trips from the yard to the brush pile today while clearing fallen limbs. Because my ankle and heels simply would not hold up. Or that I had to stand at a podium propping myself up for a 3 hour lecture on Autism. This is why I can no longer actually teach kiddos with Autism, I must instead train others on how I used to teach.

    How my last rheumy denied that I had any joint deformity is beyond me. My knees are turning inward and my ankles appear to roll inward as well. My feet are almost completely flat. I have a visibly swollen joint, with most of the swelling on the right side, in my neck. I have verified nerve damage and I drop things constantly. I regularly feel like my legs are made of lead as I struggle to pick my feet off the ground, resulting in a shuffling gait. “Just osteoarthritis” she says. I’m 37. I’ve never been involved in a serious accident and was not terribly athletic, not enough to cause this kind of wear and tear.

    And I know that several people probably think I’m lazy when they see my house work, or how I don’t volunteer to get up to help with a physical activity. That said, I’m glad that it’s pain keeping me from the activity rather than the level of disability that would absolutely prevent my actual movement.

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  • November 23, 2011 at 3:27 pm
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    Thank you for the post! It is true, that living with RA feels like being in a messed up version of Alice in Wonderland 24/7/365.

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  • November 24, 2011 at 1:49 pm
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    Thank you, thank you, thank you !!!!!!!!!! just living “the lie” too. From one day to another, it is different….how do I start to explain this to my loved ones, friends, and strangers. After 20 yrs, my hands have “that look”, also my feet, which I can “hide” in “comfortable” shoes. I keep myself groomed, hair and clothing, so I look “OK”….and the comments usually are ” you don’t look sick, you look so good, and here we go………

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    • November 24, 2011 at 2:09 pm
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      Yes! I know what you mean. I had a dr say that to me 2 days ago – ( not a rheum doc – seeing him for something skin related) – He says, “You’re doing so well” just because I had washed my hair. It was the first time n 2 weeks I washed my hair and it took me 2 hours to fix it… My RA is horrible and I can barely do anything, but it seems rude to say so and I don’t – and so he tells me I’m doing fine – this happens with the back pain doc as well – I feel like there is no way to win. Can you tell it really frustrated me? 😉

      Reply
  • November 25, 2011 at 11:50 am
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    I just wanted to say, I agree with you 100%, people don’t understand our dilemma of looking well and feeling rotten, from the Registered nurse to the RA specialist, it all seems like a perverted lie.

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    • November 25, 2011 at 12:33 pm
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      Thinking about this today as I persevere in looking for ways to fight the lie on a broad scale – any suggestions? I’m working on an article addressing more of “the lie” in certain magazines and the editors have “doctors” to back them up so they say our version of RA is the one that’s wrong…

      Reply
  • January 31, 2012 at 7:21 pm
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    Kelly, your story sounds very familiar. Over the course of the last 14 years on occasion I would wonder why I was taking any one of a number of medications. Did I still need it? After all I thought or would like to think I was feeling better. So I would go off the meds and within a week I KNEW why I was taking them…the monster came out of the closet where he’d been hiding…then I’d restart my meds. Now I’m at home not working any longer. I’m getting better rest and less stress…I think I’m feeling better or at least I want to think so. In comes Super Mom…laundry, dusting, mopping, errands, kids,ect.. By evening I’m exhausted, in pain and in bed by 7pm. The next day is comparable to the worst flare day, reminding me why I had to give up the career I loved doing. There are many days I’d just like to live the RA lie just to remember the person I used to be before RA.

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    • January 31, 2012 at 9:15 pm
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      Hi Leslie,
      I’ve had this infection for months and if I have a few hours w/less symptoms – I start to think it’s gone and I don’t need to go for another lab test or pick up more antibioitics – the mind WANTS to believe the best. But it’s good to deal with reality isn’t it. Oh… do I miss Super Mom!!

      Reply
  • February 1, 2012 at 10:15 am
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    Oh my goodness…I just read about ME! Thank-you for being honest.
    I think I’m “better off” than you as my wrists and hands can still hold things and open doors (sorta), but it causes “discomfort”.
    It’s the FEET, the ANKLES, OMG…I used to race walk. I used to hoof around DC when we lived there like a little speed demon. I LIVED walking. I LIVED being on the move. Now my husband is constantly asking, “what’s wrong with your feet?”, “Why are you limping?”, “Why haven’t you gone for your walk today?”. He means well, “bless his heart”, but how does one explain the “discomfort” walking causes when you look so “healthy”? I have no visible deformities, no signs of having an alien taking over my body, so I really can’t blame people for looking at me as if, well, as if I’m being a whimp slacker.
    THE LIE…yep, that’s what it is, and that’s our reality. Until perception about RA changes, the LIE will never change.

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  • February 4, 2012 at 12:57 am
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    I have a close relative that knows I’ve been diagnosed with rheumatoid arthritis and that I’m seeing a rheumatologist and on medication, but is convinced because of my weight gain that the rheumatologist is no good (I’m taking a low dose of prednisone) and that my extreme fatigue every weekend is not because of RA but must be something else.

    Reply
  • April 11, 2012 at 10:50 am
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    Wow. This sounds just like me. On one hand, I want to complain all day so people know what it’s really like, but I really try not to complain at all since no one will understand. I do have to get a few notes out from time to time, but to the people I’m talking to, they probably think it’s only bad when I say so. I just want people to know that it’s a gigantic, dark, ominous cloud that hangs over my head ALL day, EVERY day. It never clears up. It gets larger and smaller, but never, ever goes away. I’m ready for the sun to come out here, people!

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  • April 11, 2012 at 3:45 pm
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    Dear Kelly, I so enjoy your honest web-site and you. I have had R.A. for 42 years and it is a lonely and diffiuclt disease. I agree whole heartedly with you , people cannot see the pain and agony of simple movements that are so challenging. People expect us to do anything and everything because they do not see the pain and effort we have to face to do everday tasks. We do not say we are hurting as we feel weak and inadequate. I don’t even know how to explain it to others as I don’t always understand what is happening myself. It can change in a minute, one minute I can function and then the next I cannot. Even our loved ones who have seen us bedridden expect us once we get up to do everything like a normal person. Maybe we can find a way to explain it and hope others try to understand. Thanks for all that you do. I have no idea how you do this and try to live a normal family life but do know you are very appreciated. Thanks again, Margie

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  • April 11, 2012 at 4:30 pm
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    I just read some of the older posts on your commnets and read where a few people who had been recently diagnosed with R.A. were considering the drug Humira but were afraid of it and possible side effects. Sorry this is so long but if it can help one person it is worht it, I hope! I cannot tell anyone what they should do, take or not take. I however have tried about everything you can imagine in this 42 year battle with R.A.. From traditional to alternative, even experimental. Please be careful of many who will almost guarantee you they have the “right” treatment for your R.A. I have always tried to be very careful but have had treatments that actually caused more porblems and more damage.
    I was on Enbrel for 10 years then it started wearing off. I had a stomach infection so went off the Enbrel and decided to stay off of it. Then was introduced to a cortisol treatment that gave me the worst year of my 42 years of R.A. I am just now getting back on my feet. To get back on my feet I went to a Rheaumatologist which I usually do not like but he put me on prednisone, leflunomide and referred me to a doctor in my home state for Orencia. I started Orencia 2 months ago. OMG! What a difference I feel human again. And now am tapering off the prednisone. Oh I still have pain and take pain meds from all the damage of 42 years and not being under good care but I am soooo much better and sooo thankful. Last year was hell. If you decide to go on one of the newer drugs please make sure you have a doctor to moniter you and that way if something does come up they can catch it early and take appropraite action.
    Yes, The newer drugs “may” have side effects but the R.A. with out of control inflammation “will” cause damage and it is usually permanent. I pray I have no side effects with the Orencia but for me I will take the Orencia and trust God to keep me safe because I know I cannot go through the excruciating pain and disability I went through without taking the newer drug. I don’t like it, I wanted to go natural and it is expensive but sometimes our choices are hard and I want to have as much quality of life I can as long as I am alive and life is getting shorter each birthday. God Bless all of you who suffer with this disease. Try to hold to Hope as they are always coming up with new treatments. And Kelly thanks again for all you do!! Margie

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  • April 11, 2012 at 9:59 pm
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    Of course we know what you mean!

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  • November 26, 2014 at 8:00 am
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    Great blog! You said it all. I’ve had this 11 years now & you wrote how I feel every day! It’s soo frustrating. Nice to find someone who really understands. I’m going to fwd this to all those on my life who would benefit from this read. Thank you! Gentle hugs.

    Reply
  • November 26, 2014 at 10:56 am
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    As a non RA-er I want to thank you for educating and explaining the realities of living with RA, it has really helped me understand and deal with what my husband is going through, as he doesn’t articulate it.

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  • November 26, 2014 at 12:07 pm
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    Queen of Pain and Lies. I know you don’t want those titles. Who would? Many times I have stopped my treatments because I felt fine! The Lie! It takes several weeks to get my normal back. In Febuary I lost my free shot of Humira because we have too much! A home,bank account etc.. We don’t have much but more than the poor souls who barely a roof over their heads! Forget Meds for those poor souls. Now I have to drive all the way to St. Louis to get an infushion when we have a hospital out here! Medicare or ACR OBAMA CARE does not help very well with the cost of meds. My pension and SS goes to my meds! I have to sit in a small room with others who have various diseases. The nurse blew 5 veins trying to get the needle in. I cried like a baby. So embarrassing! The biologic Symponie sp? Does not help my knees. So I am resorting to knee replacements soon. Because I can’t afford $1000.00 a week deductible for Humira. Pain is constant. My rhemy gives me pain meds for chronic pain and med for breakout pain as she calls it. I hate these meds! I have lost a lot of family and friends over RD The lie? Hyperchondriact? Yes they think I lie about the pain! I’m over them but now quite lonly. I can’t do much anyway. This is long Kelly but you hit the nerve. Sorry But thank you for this outlet!

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  • March 31, 2015 at 11:43 am
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    I am 61 and have just succumbed to this disease. I have not had my ‘official’ diagnosis, but given the test results on the two traditional RA tests and the unrelenting pain-especially at night, I feel a strange kindredness reading from this site.
    Whatever is written, this disease is more sad than anything else I have had to deal with in my life. To know that this ‘is it’ and fear going to bed at night, well thanks be to The Lord, I have not lapsed into depression.
    I would have never imagined waking up in the morning and not bounding out of bed, opening the Poland Spring water bottles with my once-strong hands or getting in and out of the car after ten minutes of driving with difficulty holding and turning the wheel…God Bless all of those who are afflicted with this.

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  • April 1, 2015 at 3:59 am
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    This post explains how I feel to a tee. Thank goodness for your words Kelly. I am not as as gifted with words due to my medical background.

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  • July 29, 2015 at 9:58 am
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    Just happened to bump into this website as I was doing some research on RA. I have been dealing with pain for the last 8 months only to find out yesterday that I too have RA. Although the pain has been quite consistent and at times unbearable it helps to hear from others who are feeling the same thing and knowing that your not on this boat alone and that i am not crazy.

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  • January 25, 2016 at 3:11 pm
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    Kelly, I am so right there with you. I had someone say to me, let me see your hands and took them in hers, looked at them and said – they look okay to me! So many times, similar things are said and people just have no clue. There has been so much controversy over Glenn Frey’s death and even people not willing to accept that it had any association with RA/RD. I just get so frustrated at the lack of knowledge over this disease. Even my heart doctor says RA/RD cannot cause any problems with the heart. So guess I need to look for a new heart doctor now too. We keep on keeping on and fighting each and every day, each with our own issues of the day. I am so thankful for your site and your sharing with so many of us your struggles. God Bless you

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  • January 25, 2016 at 4:37 pm
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    Yes, I believe you because sometimes it happens to me. I look normal but no one knows the pain I am in. I am a hair-dresser and I cannot hold a can of regular hair spray. I don’t have the strength to do that. I wish more people would believe me when I say I’m too tired, or so tired I could die…That is the part I hate the most. I used to be able to stand on my feet all day and never g et tired, but can’t do that anymore. I want my energy back. I want my gumption back….

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  • January 27, 2016 at 8:37 am
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    I so appreciate this post! I really identified with the part about thinking your pain is better. I have had RA for about 13 years. I had a really great patch of time early last year where all the stars aligned and my meds were working and I felt great! Really normal for the first time in years. I also have accelerated osteoarthritis (I’m only 49) and that gave me a bit of trouble when I started working out–for the first time in years–but I was able to work through it. I lost weight, built some muscle and started doing some projects around the house and yard. It was so awesome, I felt strong! My family and friends were so impressed with the change in me. And in my mind I thought/hoped that this would be my reality for the rest of my life, or at least for a few years? I felt like the victor, like a conqueror who had “beat” this nasty disease. Well, that lasted for about five or so months. And then just about every joint in my body swelled up. It started with pain/swelling in my hands, of course, and I thought maybe I had irritated my hands doing all of the yardwork. But it WAS the RA and after a steroid dose pack worked only briefly, I am now back on pred for as long as it takes for a new RA med to come out since I’ve already tried and failed every med there is.

    I can’t even describe the disappointment I feel, after feeling good-really good!-for those few months. But I am grateful to have been able to sneak into “normal” if even for a short time. ? I highly doubt I will ever be able to get there again…

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    • January 27, 2016 at 9:34 pm
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      Thanks for sharing such a poignant story Louella. It covers so many aspects of our common experience. And I agree, while I can hardly imagine it, there is something like a victory that must come from feeling better. That “victorious” feeling you mention is what we sometimes hear from those who “beat” their rheumatoid disease by their own hard work, even if they take medications.

      Reply
  • August 30, 2016 at 1:18 am
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    Hi,
    This post rang very true for me. I wish people could SEE through the normal person I look like.

    Do you have a post on what to expect when you fail methotrexate and cannot take it anymore? I have searched and cannot find it.

    I’ve been on methotrexate for seven months with no positive results and all my inflammation markers at my specialist appointment today were high and my liver tests were dangerously high. I have been told I am not allowed to take it again and instead have to take prednisone alone until the test are back to normal then go on plaquinil for a little while which my rheumy doesn’t anticipate helping at all. I know this is the process in Australia to fail drugs until you’ve no other option but Biologics and our healthcare won’t fun them until you get to this point but I have no idea what is ahead of me. My rheumy said she does not anticipate plaquinil helping if methotrexate did nothing. I have destroyed joints and am on painkillers now.

    Reply
  • October 23, 2016 at 6:34 am
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    Finally I dont feel alone

    Reply
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