Everyone I know has RA | Arthritis Information

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So it seems like every week someone tell me they have or have had "rheumatoid arthritis" but it "went away". Last night a dinner guest said he had RA for three years when he had an injured nerve, but after the nerve healed the RA went away. A few weeks ago another dinner guest told me they have RA, but he cured it by cutting down on alcohol.

I know I can't educate the whole world, but these instances annoy me, because I guess I feel like it trivialises what people who really have RA deal with. Not only that, it gives other people an inaccurate idea of what the disease is, a circumstance many of us battle with on a daily basis.


Just needed to vent.Its frustrating I know, but I dont think there is enough public knowledge on RA. I have heard it too and had a few debates on the subject...Someone I know keeps telling me that they have back ache and a pain in their left foot so it must be RA...I told them their symptoms dont add up to RA, maybe they have OA and to go see their Doctor but they said "oh no, its RA as im in pain like you.....thats after they have run 5 miles, worked all day and partied all night...I wish.!!!

Gimpy go ahead and vent. That is why we come here. To gain an understanding and know we are not suffering alone. It might make you feel uncomfortable and not validated when you here the remarks that others had a brief brush with a "RA" and they are healed.

I have experienced this in the opposite form. I have posted I have MS. Relapsing kind...So most of the time I do well, and I hear you are so lucky, so and so just got DX with MS and they are in terrible shape, they got the bad kind!....I stand in amazement....most of the problem is that people have not educated themselves...First you have the obvious, a person will without a doubt be symptomatic at the time of DX. Making them appear that they have the bad kind...2nd it’s all BAD. There is no good MS. I suspect the same is with RA suffers. We will run into people who are well meaning but don't really have a clue.

Those close to me I educate a little at a time, others I just smile and say thank you and oh that’s to bad etc.

Best wishes from everyone’s FAV FAT WOMAN...YOU ALL ROCK!I have to educate them a little at a time because I'm so uneducated myself...........duh.  If I had spent more time in class instead of at McDonald's............I'd be smart insead of a fat ass.  Man..........this place rocks!!!!!!!!!!!!!!!!I hear you. I'm also tired of people equating "conditions" that can be greatly improved and/or cured for the most part with diet and exercise changes and maybe a little medicine thrown in to help- with RA.

RA is systemic. It's affecting everything- SILENTLY.  I can eat a healthy diet, exercise and take toxic drugs every day of my life and it's not going anywhere. Our lives are a crap shoot. Remission today- flare tomorrow. Remission like blood numbers- pain anyway. Today here- tomorrow there. Or hour to hour if it so chooses. Look good but feel bad. Blood work looks good- things still getting eaten away inside.
I am glad I am one of the lucky ones who can still work and function and have only bearable pain. If I was one of those who are debilitated and have unbearable pain daily- I would be downright furious!

Gimpy-a-gogo:

I understand what you're saying. It's hard expressing to my family just how serious this is. They try to understand but I guess really wont understand unless they went through it themselves.  Even people at work who know I have this say, is your arthritis acting up now that it's cold? Thinking it's just like the arthritis you get as you age. My boss even I feel doesn't quite know how serious this is when I tried explaining there were times that I could hardly walk in to work...and  trying to explain why I have so many dr. appts.  It does get frustrating at times.

Oh I also like the old classic..."Oh but you look so good"...I'M SURE NO ONE EVER TELLS ME (inflamedonline) that I look good...............everyone who saw my pics on this board will agree that I'm way overweight.................my face is droopy.............I wear too much makeup...............and may ass.................HUGE...............damn this place rocks!!!!!!!!!!!!Yeah lately when my boss smells my icy hot or I have my handeze gloves on or sees me a little stiff when I first get up after sitting- he says "it's hell getting old" yuck yuck.Yeah this is one of my biggest pet peeves.  My worst experience was the week I was diagnosed.  I just get hit with the diagnosis, start taking all of the toxic drugs, worry about my future, have vanity issues etc.  We travel half way across the country for the holidays, literally the very next day.  Mind you I had always been the healthiest person in both sides of the family.  I exercise religiously etc.  So my husband breaks the news to his family, and his mom says, "Well she's just going to have to toughen up."  Excuse me?!  She is like 3 of me rolled into one, and has never had to leave her pampered existence ever!  And the sympathy I get is to toughen up!

 
It gets better.  We all go to visit the day after xmas and She tells me that she has had RA for over 30 years...um...ok..."What medications do you take?"  I am very interested at this point because I'm new to it all..."Nothing, I just drink lots of WATER!"  And basically acted like it was a choice to take these meds...a wimpy choice.  I thought my kids were going to kill her. 
 
So basically her family has been under the impression that she has had RA for 30 years,  obviously they have somehow missed the erosions, malformations, and possible internal issues.  Needless to say they have not been a support to my husband.
 
I could go on, but trust me it never ends!
I may be wrong...but I think they still refer to it as Rheumatism in the UK. I know someone out there can tell me if that is true!!
This is the most interesting thread I have read in a while.  They are all so very true.  No one understands!!  I had some woman say "yeah right" about my handicap tag the other day.  I about ran her over with my car and my daughter wanted to jump out and bop her in the nose.  My boss and my mother in law dont understand either.  I wish I had a magic want that would temporarily let them feel what I feel.  Lets see if they can work 8 hours, manage a house, be constantly in pain, run a non stop fever and feel like ****.  NOT ! 
OK  I feel better now---thanks
 
I had no idea what RA was when I was finally diagnosed.  I was just happy to be told something, finally.  I have since realized I had no idea that OA and RA were different types of arthritis, I just knew about regular ole wear and tear arthritis.  I think that's where the misconceptions come from, ignorance like I used to have.  And Go-Go, it is so tiring to talk to others about it, they are clueless.  I know the arthritis foundations try, but I don't think there is much progress being made about educating the populace about the difference between OA and RA.  That segment in PE Obama's 30-minute infomercial showing the woman with RA was the best publicity and exposure RA has ever had.  Wish we could make people understand, but its fruitless unless they are in our ugly shoes :)    JSNM.. is that infomercial available anywhere on the net?  there's a few I'd like to send it to!! I don't say I have RA at first.  I say 'I have an autoimmune disease'. Then if they want to know more I tell them I have rheumatoid. If they don't know what it is I say 'the immune system attacks the joints and internal organs'. Some people ask 'why?'. I haven't worked out a smart answer for that one.
nevermind.. I found it.. thanks anyway ;)i ran into a lady the other day who has RA.  she says she feels guilty telling people she has it because she never hurts and just sometimes feels tired.  she looks great!  she told me she refused to take MTX or pregnisone but she does take enbrel.   well let's see i had no choice.    i took MTX and pregnisone for at least 15 years.   there were no other choices.    when i got RA my father in law said i have arthritis too.  like what i had was what he has.  this was 22 years ago.   by the way  to this day he takes no meds for his arthritis.   one time he went to my doctor to get treated i think my doctor told him off when he was comparing himself to me.  needless to say he never went back to him.   no one understands this disease.... especially my mom!  and some of  my best friends because they feel good.    period.   they feel good.   my sister in law who is a very good friend did not believe my bones were all eaten up she told me that was impossible because she studied to be an xray tech and she had never seen   an xray without perfect bones   so now i know she does not believe me.    and does not believe fibromaliga is even a disease.  i sometimes wish God would give these people my disease for just 2 weeks even my best 2 weeks so they could understand.Gena- I havent heard of RA being reffered to as rheumatism here, My father was diagnosed as having rheumatism in his shoulder and was told it was an ache that the weather made worse. I will have to ask my Rheumy. I will let you knowI think that's one of the hardest part of the disease; people say "oh, I have arthritis too, or yup, my aches and pains are just like yours; or it can be controlled with diet and exercise.
 
It gets me depressed.  I don't feel like explaining to everyone.  It hurts to hear such bullsh*t.  I can lose weight, go to the gym, but I still feel like crap.  I'm on a ton of medicine and still hurt.  No, I don't complain a lot, I usually keep it in.  But have no fear, someone will make a comment....you've gained some weight , "no sh*t, prednisone helps with that", or why are you limping?  "RA"; why are your hands so big? "RA"....and then you get the same thing, oh I have that I don't eat meat and I'm fine now.
 
Arrghhhhhhhhh!
[QUOTE=inflamedOnline]

Oh I also like the old classic..."Oh but you look so good"...[/QUOTE]

 
That's the comment that bugs me the most as well.   I sometimes wonder if they would prefer I'm not doing well as it would help them understand.  It's almost like they don't believe me.  I just say it's a good thing the medications are working.  
 
my favorite is when they try to offer advice to fix you!!!!   let's see i have had this A LONG TIME and you think you can tell me how to better take care of myself.   one of my favorites is you just need to exercise and get some weight off.  well let's see i eat less than you and i would move if i could HELLO!  i was a size 5 when i got his disease.  the weight is cause by drugs and being unable to move.  oh i just smile when i get advice and remember they have no clue.  one time someone told me just have a positive attitude and gave me a book to read.   i wish i could remember the author's name but he use to go around giving seminars on positive attitudes and winning ways.How many of us (myself included) are guilty of the same thing? Well, personally, if someone tells me they have MS or some other incurable disease I don't tell them I had MS for 3 years.

But I complained about my story to BF and he brought up a good point that that person was only trying to build a bridge to me through our "common experience", so I will keep that in mind next time I encounter this situation that the person is a least probably well meaning. [QUOTE=Gimpy-a-gogo]Well, personally, if someone tells me they have MS or some other incurable disease I don't tell them I had MS for 3 years.

But I complained about my story to BF and he brought up a good point that that person was only trying to build a bridge to me through our "common experience", so I will keep that in mind next time I encounter this situation that the person is a least probably well meaning.[/QUOTE]

I should have been more specific - I was referring more to the unsolicited advice. And then there are those people who just HAVE to make you feel like RA is really NOTHING more serious than a common cold.

Well I think avoiding the RA dr is not the answer.  I know what I was suffering before.  I am doing much better now.  I went from downhill skiing in the Rockies to not being able to walk across my totally flat backyard in a 6 month period.   I was living on 16 Advils a day for the pain.  I am living a very busy fulfilled life right now, I work fulltime, I do art shows many weekends (putting on 2 shows myself)--my hobby/business being decorative painting, I do all my own yardwork including the mowing.  But there are some drugs I would not touch--Presdisone being one--it was not even offered but I would have refused.  Plaquenil is the other--I tried it for one month against my better judgement--had real bad reactions to it.  My real concern was damage to eyes.  Even a change of 1/1000 is much too much risk for my eyes. 

I do not mention that I have RA.  I have heard the reactions and comments and can't deal with the stupid stuff that comes out of people's mouths.  I don't want their sympathy.  I just don't go there. 

I have had RA for 33 years. In the early days I did not have deformity but I did have big swollen hands and knees. Perhaps people could see that something was wrong but I never had people tell me not to eat meat or exercise .. blah blah blah.

When my aunt first got lung cancer, I shared my grief with my co-workers. The first thing 9 out of 10 people said was 'Is she a smoker?'. Well, she wasn't - 3 of 10 people who get lung cancer are not smokers.

People seem to think that the victims of disease are responsible somehow for having it. I guess some of the time we are responsible.. too fat + no exercise = heart disease or diabeties II.  But not really - thin people have heart disease and diabeties too. Where does the lack of empathy for others come from? Is there more of it these days?
yep.....I agree. 95% of the time I just keep my aches & pains to myself. My bf will sometimes ask "Why are you limping?" I'll just simply say, "oh my knee is acting up a little" He'll then say"Well, have you been taking your medicine?" I just wanna bop him in the head sometimes. He's just totally clueless
 
I too used to live on 16 advils a day alternating w/ tylenol( before I started the toxic drugs)....just hoping it would take the edge off.
 
I am lucky though to have understanding parents, siblings & most friends. It does help.
I work for a dermatologist, very nice women.....and I'm thankful that they too understand this disease. Right after I was dx'd, my boss said to me" This isn't fair Leann"  Yeah.....I'll say. I went to work in house shoes one day because I could not get my feet into my tennis shoes.......awful........
I used to walk the floors at home in the middle of the night balling with pain before the meds started working. I was angry for months after my dx.
 
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