What’s the Big Deal about Rheumatoid Disease?

cross mural on buildingJust how big of a deal is this disease? I suppose the fact that I’ve written several hundred pages about it is a clue to my opinion. Yet, most of those articles were written with intentional restraint, avoiding hyperbole, at times even understating my own symptoms in an attempt to be more judicious.

Many view Rheumatoid disease as something less than what it is and that leads to outrageous minimizing of facts related to it. Unfortunately, that is even done by many who have been charged with researching or reporting concerning the disease.

Over the last three years, I’ve communicated with those who do not have RA using as little emotion as possible because as an RA patient, I felt vulnerable to a cruel Catch-22 of this disease: the worse we portray the disease to be, the more it is assumed that it’s an exaggeration. Here on the blog, I’ve covered accusations of low pain tolerance and catastrophizing about a disease that can supposedly be treated by diet or lifestyle changes (see recommended reading below for some examples).

What is the big deal about RA?

This disease is a big deal to a significant percentage of patients who’ve lost physical abilities, careers, and relationships.

RA is a big deal to caregivers whose lives are also forever altered.

RA is a big deal to a majority of patients who live with extraordinary daily pain.

RA is also a big deal to many of us who have lost family members to it. Over the past few years, we’ve also seen loss in our community although it’s often played down partly because we don’t want to scare others. However on January 23 a warrior some of us knew, Cathy Russell, passed away and her family has asked that her memory be honored by contributions to the Rheumatoid Patient Foundation (Los Angeles Times obituary).

RA Warriors are people who often fight for every bit of life they enjoy. Some fight to get out of bed or be able to dress or eat. Others fight to keep jobs to provide for their kids. They do all this with few accommodations and in the face of a collective shrug from a world who thinks the disease is no big deal.

Warriors like Cathy are intelligent, sensible, and brave. They choose to fight a disease that often causes dangerous conditions such as infection, heart or lung disease, lymphoma, anemia, or spinal cord instability. Yet they fight with treatments which have their own additional risks.
RA is certainly no big deal to those who are deceived about it as Judi Ketteler was back in 2009. Her article in Woman’s Day drew hundreds of calls, comments, and letters to the editor from us. We’ve covered many similar articles. My friend Carlo showed me another one on Twitter yesterday morning that certainly depicts the ignorance (slander) often described by commenters here. We are used to it, but we are also aware of the damage it does.

I realize some will be turned off because they prefer to hear about “Woman’s Day RA,” an easy going kindler gentler version of RA that has a happier ending. However, I’d like to see the real RA cured. And that’s not going to happen as long as it’s no big deal.

Note:  Although the editors at Woman’s Day did not withdraw their position in response to our many letters, comments, and calls, there was a happy ending with Judi.

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/

37 thoughts on “What’s the Big Deal about Rheumatoid Disease?

  • February 14, 2012 at 8:13 am
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    No big deal? I have lost the last year of my life to this no big deal. Unable to function, unable to cope on many days, unable to be the wife and mother I used to be. To date, there seems to be no end in sight either. I have been function-less for a year. I have tried to hold onto hope that it will get better, but as more time passes, that hope gets smaller and smaller. No big deal? Tell that to my children who miss their mommy and my husband who misses his wife. I think they would have a few choice words for anyone who believes this is “No big deal”.

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    • February 14, 2012 at 8:28 am
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      Well said, Andrea. Those of us who “know” up close that it’s a big deal unfortunately learned the hard way. But has there ever been a disease this devastating that was believed by society to be no big deal?

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  • February 14, 2012 at 9:29 am
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    No big deal???? I recently caught a cold and while I can’t be sure who it was from I have a co-worker that feels it is her duty to come in sick to work to show how dedicated she is. Within 3 days of waking up with a sore throat, I had pneumonia and was out of work for 7 days. I just started my ra meds again on Sunday and then, yesterday, the same co-worker came in with a stomach virus. This behavior is the big deal because it can be deadly to those of us with ra.

    The big deal is that RA robs us daily of all things that we love and relentlessly every single day. Every day we fight to retain some sense of normalcy, dignity and humor. Socializing is very difficult because we are simply too tired at night to attempt it. Thank you Kelly for your voice. Your compassion makes this much more bearable.

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    • February 15, 2012 at 12:58 pm
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      Your post reminds me that it is not just the physical symptoms of RA, but the scores of things we have to think about all the time. Many/most of us are on meds that make any infection a major problem. When colleagues would come to work with fevers, coughing, I would huddle in my corner, keep as much physical distance as possible, wash my hands often. I do the same in stores, waiting rooms, and especially on planes when people near me are coughing and looking ill. RA requires so much attention in so many ways; I think maybe each one can zap just a little more energy from our already limited supplies.

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    • February 15, 2012 at 4:30 pm
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      Do you have a blog Anne where you have written about this? If not and you would like to start one I’d love to link to your blog. If you would like to write something up for me to share in mine (like a guest writer maybe) that would be great too. Stories like this need to be shared so people understand why we ask them to stay away from us when sick. Maybe there should be a (forgot the word you use, Kelly) thing like with other subjects where many people write about it on their blog? Just a thought….

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  • February 14, 2012 at 11:18 am
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    Things like this I why I am so scared right now, got right side abdominal pain after first Cimzia shots and then it got worse after second set, liver levels are normal and waiting for ultrasound results. I am not doing my next shot until they find out why is wrong, this was my choice not the doc. They just say watch it and see what happens, plus I had a site reaction I never had before. These meds are scary and dangerous.

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    • February 14, 2012 at 12:21 pm
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      LInda, it’s so hard – the disease is dangerous too. But I agree that you have to be the one who decides. I’ve been through similar situations and it seems no one is “worried” but me at times (like with this 5 month uti infection) – but I know from other patients that some doctors are more cautious than others. There are no hard and fast rules yet with these treatments and what is safest. We have to look out for ourselves. I hope your abdominal pain is soon relieved and it’s not something to worry about.

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  • February 14, 2012 at 9:31 pm
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    It appears that I actually don’t have RA after all – that is my big deal at the moment. Dealing with a Rheumatologist who I pressed for some information, for some light, who then said that in his opinion I actually “do not have any Inflammatory Arthritis condition at all”. Even though I was amazed and shocked by these words I had enough presence of mind to ask why, then, the pain and disability?? Ah well, this is about me being overweight. That’s all, just that I am too fat. I stare at him – blind-sided. He explains that the pain is because I am overweight, he explains this impassively. I ask where does the Tenosynovitis come from in my hands, then (no, I don’t walk round on my hands in case you wondered…) and he replied that was the Fibromyalgia. So – I do still have that, the Fibro? Oh, yes, that was diagnosed by a well-known physician, so that is real. I say: so the Teno in my hands is from the Fibro, but in my feet is from overweight? Yes, exactly so. I ask then: when do I stop taking Sulfasalazine? No, no, no, you don’t stop! But why take it, if it is to treat something I do not have? He says, well, it does not cause many side-effects, in fact, YOU (pointing at me with a very skinny finger) have found it very helpful and had no troublesome side-effects. True, I say, so it treats Fibro? No, it is not treatment for Fibro. Soooo – why am I taking all these meds?

    WHAT has made it impossible to walk on my feet, hold a pen, stand for any length of time? Over-weight. My amazement is huge – why was I not informed before? Well, he did tell me that I should lose weight, and I had told him that a lifetime of dieting had made me fat – so that (so I had told him, he says calmly) that dieting was not an option for me.

    Anyway, he will give me a steroid injection into my very painful right thumb. But, WHY, I say? Well, THAT pain has come from another cause, that will be… maybe osteoarthritis? So the injection will help. Okay, I say, bewildered. He wipes my thumb with an alcohol wipe and suddenly, without any warning; any word, he plunges the needle into my thumb joint. The pain begins and rises, rises, I am reduced to gasping, and blurt out “that really hurts!” Tears start streaming down my face I cannot see through my glasses the pain has me rocking in the wheelchair and gasping – he says, quietly and with very little expression “these injections can be quite painful” as he opens the door for me to leave. Then; “can you drive that chair with your left hand?” No, I can’t, not really. But I turn the speed right down and slowly manoeuvre to the front desk, my right hand raised above the armrest like a slowly swelling balloon. I pay for this atrocious pain to a receptionist who will not look at me, not meet my eyes. I very very slowly make my way; left hand on the wheelchair joystick, to the waiting transport. The transport driver is a human being, and tries to help, tries to steer/drive the chair onto the lift for me from the side – we manage to get me and wheelchair into the vehicle.

    Before I left his office the Rheumatologist took my diary from me and wrote another appointment in for me, because I could neither see through the tears, nor hold the pen. In six months, he thinks I should go back to see him about a disease he says I do not have.

    What IS the big deal, I wonder? If I now no longer have RA, what about those poor souls who DO have it? How must they suffer? My stomach churns at the pain and misery they must go through, if overweight can do this to my hands, wrists, elbows, knees, back, ankles, feet, neck, hips – what must they endure?

    What do I do now. What, what, what, do I do now?

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    • February 17, 2012 at 2:32 pm
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      Oh Linnie Bird, I am so sorry you had to go through this. What should you do ?? If it were me, I would call around until I found a rheum dr that is willing to use sonogram or ultrasound to aid in diagnosis. I am assuming you are sero negative. I am as well, and that is what they used to confirm my RA. Hope you can find someone. I have to admit,I am ornery enough that I would tell that jerk I am insisting on a sonogram, the only way I know that should answer if it is RA or my weight. I believe that there are some doctors that have a God complex, it’s up to us mere mortals to inform them that they are sadly mistaken.

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    • February 20, 2012 at 12:42 am
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      Linnie Bird, I read your post the other day aloud. The way the thumb injection was handled does sound cruel & I cannot imagine why this goes on except that many apparently have no idea what we are go through. It may be little consolation, but I’ll tell you that there are many thin people who suffer the same and that weight has nothing to do with how this disease attacks our joints. We’ve even had comments from some people who lost a lot of weight and did not improve joint symptoms –
      AND, I’ve heard this “no longer have RA” scenerio several times recently too. What is going on? A person takes meds that moderate how obvious the symptoms look, and then she’s cured? I do not understand how it’s so hard for them to understand this disease. Anyone can spend a few days reading the 17,000 comments here and be educated.

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  • February 15, 2012 at 4:01 am
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    Another great post! They tell us it’s no big deal every time they say “just” in front of a suggestion, like “just lose weight” or “just exercise more” or “just eat no meat/only meat/pineapple/cumin/etc.” I had a “friend” tell me the other day, “Well I have osteo and osteo is MUCH worse!” Another way to say no big deal. I wanted to ask her if there was now a martyr award for who has the most pain… I didn’t. I said, “I’m sorry you have so much pain. I really do know what that is like.” No way was I going to say, “osteo, no big deal, just take some chondroitin.” No matter how much I think I would have liked to.

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    • February 20, 2012 at 12:07 am
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      That is the second time I’ve heard that – who is spreading that myth? We have a radio ad running here for a clinical trial for a pain med that makes OA of the knee sound like a horror – sound effects and drama etc. Never seen anything like this for RA. They really do not know.

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    • February 20, 2012 at 12:29 am
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      good point, Lisa. There is no “just” anything with this disease.

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  • February 15, 2012 at 9:10 am
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    I am so sad & sorry to hear about Cathy. It is always devastating to hear of people that have lost their fight to this disease.

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  • February 15, 2012 at 9:20 am
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    I have been blessed to not have too many people tell me that it’s not a big deal. Most people that we have come across knew Emily from before we started to get her disease under control. She was way too young to be joking, so people just watched with sadness. It’s still like that to a degree, though it is a bit different with the Prednisone. My biggest issue is with doctors. Between my primary that tells me that joint pain isn’t a sign of RA, to our pediatricians that still hope that she will grow out of it and don’t prescribe a long enough course of antibiotics. I hadn’t realized how big of a deal that was until this past couple of months as she has fought this terrible sinus infection. Somehow it didn’t turn to pneumonia, likely because I am a stickler for taking her to the doctor at the slightest hint. If the doctors aren’t educated, how can we expect the public to be? That is why I am so thrilled at all of the many people and groups advocating now. Every individual effort will help. Maybe even some of those doctors will listen. 😉

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  • February 15, 2012 at 10:20 am
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    No big deal…Right! So where has the old “me” gone? To Pluto or something? I used to be a master gardener, a teacher, a wife,a mother and a Grammy, but I feel that’s long gone. Oh sure, I’m still a “wife”, but not the same spunky lady he married. Yep, still a Mom, but I no longer can help my son with his business (landscape design). I can no longer jump on the tramp and roll down the hill and play chase with my grandson. No big deal they say…as I lay in bed at night wishing it was morning because I am hurting so bad.
    No big deal as I came down with MRSA that went systemic.
    Am I as bad as some? NO. I don’t have deformates, yet.
    But with RA it’s not always what you see. Who can see the bone crushing fatigue or the joint pain without a lot of swelling. Who can see the chest that hurts, the low-grade fevers or the stomach that is always upset.
    No big deal…an old saying goes don’t judge until you walk in my shoes. I think then it would be a big deal.

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    • February 19, 2012 at 11:59 pm
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      pluto? yes! exactly.
      I do believe those who think it’s just no big deal would have a very hard time in our shoes.

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  • February 15, 2012 at 11:02 am
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    No big deal??!! Yeah, RIGHT! I remember my mother – who used to be a gorgeous, svelt business woman. We went places together and had great times. When I was 21, she developed RA. Within 2 years she was a shrunken dwarf with huge knuckles and was unable to wear the spike heels she always adored, and which were almost her trademark. She died 15 years after diagnosis, in a nursing home, of complications of RA. A couple years later, my feet started *~*hurting*~* and I was tested. No ANA, No RA, but my feet were *~*hurting*~*! 30 years later, I am diagnosed with RA. The injectable MTX that is the backbone and staple of my treatment is in short supply, and Medicare won’t pay for any biologics except Remicade. With a decades long positive TB test, I’ve had to add still another pill – isoniazide – and hope that in 6 months or so I’ll be able to take Remicade and hope it works longer than 2-5 years.
    I’m a bright, intelligent, extremely well-educated woman who has a lot to offer, but my fatigue is so all-encompassing, that I can only “do” one activity a day – go to grocery, but can’t “do” supper; get my hair done, but can’t go out that night; take Emmy and/or Magnus to the vet, but can’t “do” reminder training with Emmy for the rest of the day. Trying to juggle all that, plus my pain level – well, you get the idea! The pain affects my cognition. For a while I worried I was developing Alzheimer’s, but then I stopped taking pain meds and my “brain” turned on again.
    Yeah, RAD IS a Big Deal! I don’t wish this on my worst enemy, much less family and friends!
    To those who say RAD is “no big deal,” because I’m getting around “ok” on a particular day, I’s started replying, “Yeah, well, walk a week in my moccasins!”

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  • February 15, 2012 at 2:20 pm
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    I have tried to all this disease “Rheumatoid Disease” or RD since you suggested it. RD avoids the mis-label “arthritis” completely and implies the multifacets of this disease. It is hard to break an old habit, but it is something that I am working on!

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  • February 15, 2012 at 3:14 pm
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    Right now the big deal to me is that I want to sleep all of the time. The big deal is that when you are living with RA there is always going to be a big deal for you to handle. Whether it is pain, loss of mobility, loss of career, etc, there is always going to be something to deal with, your life as you knew it is over. Period. I have been diagnosed now for 1 and 1/2 years. Maybe I am just being silly here when I say that we haven’t even come close to dealing with the issues I have living with RA for only 1 1/2 years. When I say “we”, I mean my doctors and me. When I finally insisted that my inability to stay awake even an hour after I get up from an 8 hour sleep had to be addressed, I was told I must be depressed. What??? Even I know that severe fatigue is a symptom of both RA and Fibro, so why jump to the depressed diagnosis?? Maybe the dr didn’t get that memo.

    Okay, I’ll stop being sarcastic here and say that this is just one of the thousands of reasons why RA is a big deal. It is a big deal to me that despite my daily pain, my swollen hands, my hip screaming at me to get up and walk around, my knees and ankles begging me to sit, my feet and toes that rarely shut up, I am trying to get my degree so I can have a job I can do with this blankety-blank disease. My desire today is to be able to stay awake long enough to read a chapter in my Biology and Psychology books. Little steps, just little steps…

    Also, please for those of you that do, join me in a prayer that my dying cousin can have a peaceful passing. 56 and dying of COPD from smoking. I thank God I quit, hope if there are any smokers here and you want to quit that you are able to as well.

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  • February 15, 2012 at 4:14 pm
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    Was it the RA that killed her? A complication? I really feel for her family and I am sorry she ever had this disease!

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    • February 19, 2012 at 11:30 pm
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      There is a link there to the obit in the LA Times, but what I’ve heard is an infection shortly after an infusion. Death by infection is much higher (I’ve read up to 6 times higher) with RA even without regard to medciations, which add more risk in many cases.

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  • February 15, 2012 at 5:15 pm
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    Another great post Kelly- I totally agree. It is a big deal to have this disease, and the way it is often portrayed in the media is offensive and frustrating. I had a friend ask me recently “So do you still have to take drugs for it?”. She is very kind and has known me since before RAD, but when she said that, I realized (again) that even people that know more than most about RAD do not have a concept of the ‘forever’ factor. Not just the disease itself, but the life long drug regime that goes with it.

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  • February 15, 2012 at 9:10 pm
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    No Big Deal? When children live their lives in daily pain!
    No Big Deal? When a teenager becomes crippled!
    No Bid Deal? When a young adult is disfigured!
    No Big Deal? When those of us with RA loose the ability to live our lives with any kind of normalcy.
    No Big Deal? That in order to even live our lives we subject ourselves to medication that can kill us, if in fact the RA doesn’t first.
    No Big Deal? That we go about our days educating and supporting others with the same debilitating disease because the medical doctors, professionals, etc., have no idea how to.
    Kelly, through all of your exceptional hard work the word will continue to get out and spread among our communities that….
    YES it is a BIG DEAL if you have RA.
    Thank you Kelly, from the bottom of my throbbing feet – and all parts in between – to the base of my aching neck.

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  • February 15, 2012 at 9:10 pm
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    I just wanted to say thank you, I really appreciate you and what you do here, the way you can empty your brain, out your fingers and share with the world. As I educate those in my life, I often refer to your site. I forwarded todays blog, to many friends, it is the first thing I have sent them via email since being diagnosed January 31. You have my gratitude.

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    • February 19, 2012 at 11:23 pm
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      This is so encouraging and helpful to me to hear. I hope your friends listen!!

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  • February 16, 2012 at 5:10 am
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    I like this post, it is so true. I often down play how bad i feel at times because I do not want people to think I am making a “big deal” but the fact is as you rightly said it is a big deal. I have had Arthritis since the age of 17 and I am now 30 it has had a massive impact on my life it is an exhausting diease mentally, physically and emotionally and I guess unless people actually have it they will never really understand how much of a “big deal” it is.

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  • February 16, 2012 at 12:26 pm
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    Ha! Lisa, I love your comment about a martyr award for the most pain… I am completely willing to listen to others tell me about their pain. But it often feels like they are saying that everyone has pain, and I should stop complaining, that I am making a “big deal” of it. Congratulations on your restraint and compassion in sharing your reaction here instead of with her – and thanks for giving me a laugh this morning.

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  • February 17, 2012 at 5:42 pm
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    The big deal is that my 4 year old son asks every few days when my “arthuritis” is scheduled to be done. I have gone from running around playing games and rough housing with him to sitting on the couch or now mostly a large chair with a foot stool and trying to stay awake in the evening. What he says is cute but still stings, he understands I am tired and hurt but it is disappointing to him. I also am scared of passing this awful disease along to my children. This is on top of being a person who never sat still to being content to sit around and watch tv. This is all a very big deal, I am still optomistic that the Enbrel will help but it’s hard to wait for it to start working.

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    • February 19, 2012 at 10:46 pm
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      I understand, your post could have been written by me Mr. C. except that my son is now 6, about the same age as my diagnosis. Hopefully you’ll have better days soon when you can do more with him. I hope it does work & quickly.

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  • February 20, 2012 at 11:06 pm
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    Well, I really believe until people go thru this…they just cannot understand that every part of our life is effected by it and our loved ones too. I dread having to rest all the time and see my kids peer in at me…I feel so guilty, lazy and like a quitter and yet I am not there by choice. I also have a cataract now, age 41 and have blurred vision, extreme eye aches and headaches above my eyes…dry eyes the eye doc says from ra…really? So, there goes another malfunction!!!! I will be seeing a counselor tomorrow since my ra doc has decided I seem to have depression….I am not going for him….I do need to vent and don’t want to give any angry thoughts to my family and friends. The only way I get through this is by staying close to God through His Word and I am so thankful for this site and I too recommend it for preparing people for the information they will need as the doctors are not as descriptive. All mine ever said was when we find the right biologic we should be able to get you back to normal. That would be great….I just pray the damage done in the meantime isnt too crippling. Also, from what I have researched….the biologics only work for so long anyway until you build up an immunity so where is the honesty…that is what we need…no sugar coating…just give us what we need to be strong, prepared and get adjusted.

    As far as others thinking this is no big deal…I am definately fed up with the usual question….How is your arthritis today….luckily I pray for patience and try to be polite and say that one symptom is about the same…just praying my heart, lungs, eyes (now being bothered) don’t get attacked. Then they look at me with shock. I simply say…it is not arthritis…it is rad…autoimmune

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  • February 24, 2012 at 8:43 am
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    Autoimmune diseases have cost me my successful career as a researcher in inflammatory disease (go figure!), my marriage, ability to work or be independent. I’m only half the mother I feel I should be and have lost most my friends because ‘I can’t keep up’. I now have to bring up my young daughter alone with little outside support. Both me and my daughter are isolated because of RAD. I just pray that I don’t have another spell in hospital because I’m not sure what would happen to my daughter.

    But don’t worry, RAD is NO BIG DEAL!

    I’m extremely grateful that my rheumy is a great doctor and understands that I’m a patient and not a disease. He see the bigger picture and does everything he can to help me. My other consultants could learn a thing or two from him.

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  • February 26, 2012 at 11:37 am
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    I have had RAD since 2004 or 5? seems like a life time….
    I mirror the thoughts of the other posts and strongly agree that RAD has changed my life and the life of my family members.
    Despite trying to explain this disease to friends and family, the worst problem I am having is at work.
    The stress is giving off a domino effect and brings on more swelling, pain and fatigue. My eyes are extremely dry and hurt from the sjogrens and cataracts…this from one that had 20/20 until RAD. Driving home from work is another challenge with fatigue so bad that I have to stop several times. All for a 35 to 40 minute ride…
    The people at work pretend they understand, BUT THEY DO NOT.
    I have posted information on RAD at work, I have explained RAD until I too tired to keep hitting my head against the wall.
    I was made to bring in an ADA note from my doctor, and do they follow the ADA note, NO!…I was never a quitter, so I will continue to fight, but it is discouraging and the fatigue is overwhelming each day.

    Why do I stay, I need the health insurance, and RAD has somehow instilled a fighting effort, because contrary to what so many others believe RAD is a BIG DEAL!
    So to those that say its NO BIG DEAL, I say walk a mile in my shoes ( if you can)…

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  • March 5, 2012 at 11:28 pm
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    Hello everyone! I am new here, but reading this post I had to reply. I am glad I found this group of people where we can vent and understand each other.
    Its not a big deal? I guess I am very lucky finally to have excellent team of doctors who very concern about my RA. Just to explain why “not a big deal” bothers me so much, I want to let you to know what RA can do to a person.
    I was diagnosed 6 years ago with very advanced RA with a lot of damages done already.Not b/c I was negligent, I was going from one RA to another just to hear that my JRA has nothing to do with my issues now: you don’t have RA.
    Very typical for RA serious heart problems, enlarged nodules in a lungs+ fluid on them – all due to advanced RA. Every joint in the body is effected, no cartridge in the neck, knees, elbows and shoulders, damaged bones, muscle tears, ruptured ligaments and torn tendons, bowel/stomach/skin issues. Hands, feet,knees, wrists and all soft tissue inflammation, all due to RA.
    I have been on biologics, chemo, Rituxan – you name it and only once got into short remission on Orencia. Otherwise despite trying hard, I cant get better at this point.
    I am sick all the time, fevers, sore throat and more. I used to be very fit, hard working “corporate America” mom, wife, friend. Now I spend my life home, hardly walking, in pain 24/7.
    I dont complain, I take day at the time and make the best of it. I have a wonderful family and friends who support and understand me. But this life is not the one I wanted for myself at this age.
    My GP told me ones that RA can be very mild and people live without even knowing they have it. You, on the other had ” a real deal” and if you refuse treatment, you will not be here long. He will never say “it not a big deal” to me, he knows what a real deal RA does to humans.
    I cant decide though and hope someone here will share with me an opinion: should one continue treatments or not if treatments make you so ill. I understand that treatments to stop further damages to the body, to improve life quality, but for me each treatment makes me more exhausted, nausea, extremely weak, lifeless, more pain and inflammation, fevers all the time… Is anyone faces same issues? Please help me to understand. Thank you in advance.
    Linda 57

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    • March 6, 2012 at 4:59 pm
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      Dear Linda,
      I’m sorry it took so long to be diagnosed and treated and that the treatments don’t seem to be helping. I know someone else might answer you so please check back again. But It’d also recommend you read this post-click here– on a topic similar to your question and the comments there discussing what to do when the treatments seem as bad as the disease. Also, I’d say that your situation is not rare – I do hear similar stories from others often. I go through the same dilemma with meds as well.

      In my case, the fevers, weakness and inflammation are caused my the RA and I tended to blame some symptoms on the methotrexate for example, but when I was off it for a short time, I still had the nausea so now I think realize it may not be a side effect, in my case. We also have to always be on the look out for the many secondary illnesses or co-morbidities from the RA that might be the cause of some symptoms.

      Reply
  • January 28, 2014 at 1:07 pm
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    My RA pain is pretty much under control right, but I know the excruciating pain of onset. The kind of pain where you are just sobbing and can’t do anything. It was scary and yet people would not believe me when I would say icant come into work because my thumbs are so swollen I can’t get my underwear on! After 16 years, the worst thing for me is the fatigue, or what I call the wall of exhaustion. My daughter, who now lives w/me. Is the only person who is non-judgmental and believes me when I say I can’t do that or I can’t go there because I’ve run out of steam. Im 74 now and she is 46 and a huge help for me. My son tries to understand but just doesn’t. He recently said, mom, you used to push yourself when you were working. Why can’t you do that now?’I said that was in 2010 and I had never fully recovered from the pneumonia and Mrsa that hospitalized me for 10 days in upstate new York. When I came home to Texas, I had 3 cortisone injections in my spine over the next 3 months and then had a titanium rod put in my spine over Christmas. My surgeon said RA had destroyed 5 discs in my lumbar area. I again got pneumonia again while I was hospitalized and nearly died twice. So I retired. My son says he knows it’s the RA that has weakened me and it makes him mad, but sometimes he gets mad at me. Sound familiar to anyone?

    Reply

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