I've actually been one of those "lurkers" that was up for discussion a while back. In fact I've been a "lurker" for 7 months but finally decided that perhaps my "two cents" worth will spark a little life into some of you.
I was diagnosed with moderate to severe RA July last year after visiting a doctor for a swollen, painful joint in my right ring finger that had been annoying me for several months prior. Quite honestly I thought I had broken it. As many of you may relate, I was caught completely off guard and was devasted with the prognosis. This was especially frightening to me since I have seen the devastation that this disease can cause.
After hearing all the bad stuff, I was sent home with a prescription for ibuprofen to reduce the inflamation in my finger and more than enough information on the drug methotrexate to scare the life out of anyone. I spent the next few days researching RA and methotrexate, albeit, that's how I happened upon this site. During those couple of days, I'm quite certain I read every post on this site hoping to find some light in this darkness I was feeling. Instead I was drawn to the ones that portrayed a life of pain and misery.
After some sleepless nights, I did, however, decide to begin the methotrexate therapy with the realization that every person is unique and reacts to medication uniquely. I also, at that time, made the decisiion that only myself and the lord above owns the responsible for my destiny and I vowed to never let this get me down.
I started on 2 pills of the methotrexate anticipating I might not feel 100% the day following and quite honesly I didn't feel normal- but then what is normal? I have continued the drugs, increasing to 5 pills per week and I don't always feel so great the following few days but I convince myself to keep going. I have a husband, busy, involved kids and a full time ,highly stressful position at a reputable company. I keep my focus on those things instead of how I'm feeling and quite honestly, I think it's easier than the self-pity, I'm going to try and get disability scene that I see going on here the times I do find myself "lurking in the shadows". I hope that you are not offended by my bluntness but rather take my advice to focus your little energy on the brighter things in your life ...
I'm offended and I'm not even to the point of disability...how dare you? who the hell do you think you are?
RA affects everyone DIFFERENTLY....do you understand what that means? It means that you might be able to function at a higher level than someone else who has RA. There are also many other factors involved. Additionally, you have only been diagnosed for 1 year. Some of the people on this board have battled this disease for years and years.
I say take your 2 cents and put it where the sun doesn't shine....
sorry if this is blunt, but you struck the wrong chord with me~and you have no right. You don't even know anyone here.
Lori
I'm going to be blunt too..
I wasn't even going to respond but I sat here and got pissed. How the hell can anyone say they have "moderate to severe " RA with only ONE joint involvement?
The standard of practice is the 28 joint assessment, or the DAS scale. you've got an "owie" finger, mean while I can't wipe my own ass in the morning.
There are people here with multiple surgeries, people who can't walk, who are destitute because they can't work and can't get the disability they have contributed to for all their working lives.
You have no right to judge anyone, you sanctimonious twit.
I think you are more afraid than any of us. And since you have not battled, have not lived in agonizing pain that is relentless night and day, gone to highly demanding jobs and carried on with one's life even with all that, I don't think you have room to judge the rest of us.
You are quite simply afraid that you might fall from your pedestal, off the wall you have built to protect yourself. It is shameful that you have chosen to strike out others who are fighting a battle to have the most life that they can in spite of what is thrown at you.
This attitude will not protect you in the long run. It will serve to alienate you from the people most able to help you. You are at the beginning of a long ride and hopefully you will not get worse, you will not lose what some of us have. But putting us down does not make you a better person. I've heard that sermon before and dismissed it, noting the true source.
Honestly, some of the nice people on this forum seem to go to pieces when confronted with another poster's positive attitude She said she'd vowed to never let it get her down. Heck, that's what we tell everybody who vents or is new to the board..
ari33 said she went to the doc with a bent finger and was then dx'ed as having RA. There could well be other factors not mentioned in detail, but if her doc says she's got RA then she's got RA. Don't get pissed off because it's not as bad as yours - it's not a competition, is it? But she's tackling it early, which is what you should do. Gosh, some of the posters here forget their doctor's appointments or don't take their pills.
The MTX could well work for you, ari33, it has for me and kept joint damage to a minimum. Maintain your positive attitude, it's half the battle. Good luck - Des.
Ari,
It's true, when we open a door to let the darkness out, sometimes we forget to leave it open, to let the light in.
It's also true that some people find security and comfort in sactimonious self-righteousness.
I hope you meant the first and aren't the last.
I do not mind her taking the brighter side of life. It's a good philosophy. But I do mind her accusing others of not doing so. I'm glad she is not as sick as some of us. I wouldn't want to wish any of this on anyone.
I work very hard at trying to find the positive things in my life, to look for hope. And lately, it's been a real fight. There's been a lot of people along the way that seem to think you can just think yourself well. If that was possible, I would be there. I have to work at getting well though. I have to take the medications, see the doctors, get the constant tests, do the physical therapy. I've thrown everything into trying to get well. A positive attitude is sometimes no more than getting up again and again after you've been repeatedly slammed down.
She's waving her good fortune at still being able to work and maintain her family and her life and then telling us who have lost so much we simply have a bad attitude.
Maybe we've misunderstood what she meant to say. If so, hopefully she will clarify it.
Ummmmm, Dessy, have you lost your rocker?
No one is competing with anyone for anything. I wouldn't wish this on anyone, not my worst enemy. WTF??? I don't think anyone is doubting that she has RA. I'm sorry she does, I'm sorry ANY of us are dealing with this. It was her attitude that got my panties in a wad. And, YOUR attitude is getting them bunched up my butt. Why in the hell would we "go to pieces" when we are confronted with another posters positive attitude. Have you been smoking crack?
No sh*t we tell people to never let it get you down, hang in there....that is what we are here for. That is NOT the attitude she came across with. She came across with a holier than thou and she is much better than us because her and "god" decided that it was never going to get her down. I really hope she is successful. I hope she doesn't go thru what many others on this board have.
I also agree that a positive attitude is half the battle. With that being said, she could have learned a bit more about us before making such an ignorant post. You have been around here long enough to talk sh*t like this~shame on you.
Lori
As a person firmly entrenched in my church I must say that even I get down. After a few years go by fighting every single day to just walk I do hope that you are able to maintain your positive attitude. I am just a human and though I walk with God daily He knows how hard RA is to live with. When we get down God uses our rough circumstances to make better people out of us. When we get down God is there waiting for us to ask His help and our relationship with Him grows stronger each time.
As someone that works with people in our jail who are mostly down I do know that telling them just to get and keep a positive attitude would only serve to make enemies. Instead of pointing out what may be wrong it works so much better to just be a compassionate and understanding listener. I find that showing others how to deal with life changing circumstances rather than trying to tell them what they are doing wrong is a far superior way to encourage them.
"...and quite honestly, I think it's easier than the self-pity, I'm going to try and get disability scene that I see going on here the times I do find myself "lurking in the shadows"..."Well - I'm really pleased that you only had 2 cents worth!!! Maybe you will get lucky and only have 2 cents worth of the problems that the great supportive people on this board have to face every day of their lives, and yet are still able to give valuable support to others.
I am amazed that anyone who is diagnosed with this awful thing could be so abso-bloody-lutely insensitive!!!!!!
>>Unlike most of you on this board - I sincerely hope RA takes her down big time!< <
Very nice. Why in the world would you say that about a wife, mother and fellow human being who is in the beginning of a disease that can control your life?
The original poster has RA, but she doesn't know what she doesn't know. I read her post as a positive thing. Here is a person who has RA and it isn't ruining her life. Good for her! That's one for the home team, in my book. She doesn't know, and hopefully never will know, the fear and financial devastion the disease can be. Her life is what some of us had/have/want. I read her message as an appeal to focus on what we have and can do instead of focusing on our losses. Her delivery may be a little off, but the message isn't a bad one.
Scout,
I agree, her message is a good one. Hell, it is a great one.....BUT her message is MORE than a little off.
I don't think it is the message that got all of us going, I think it was the delivery.
Lori
After years and years of dealing with the ups and the devastating downs which occur with this disease I think we all have the right to pity party once in awhile.This may be the only place some of us CAN have a pity party. The rest of our lives are so taken up with coping and "looking on the bright side", that the only place we can let our hair down is this board. This is where we come in the moments that we feel down and don't want to burden our loved ones. This is where we come in the moments that we feel discouraged and don't know where to turn for support when there is no-one standing next to us. This is where we come in the moments that we have been knocked down once again and need a hand to get up. This is where we come in the moments that we need to know we are not the only ones riding this rollercoaster that is RA.
ari33 has not been through the devastating times, the financial stress, the confusion, loss and blackness that many of us have been through. She may never go through that if she is lucky enough to stop RA in its tracks and confine it to her finger. More than likely she WILL go through at least some of these things, and when she does (if she stays here), we will be the ones to help carry her burdens, help pick her up and help her face another day. A place where she can have a pity party before turning on a smile and convicing her loved ones that everything is OK.
The place where she is, is called denial. Most of us have come through that place and are in places called anger or acceptance. Personally I never would have insulted this group of soldiers with the type of things she said, and like many of you I was shocked at the harshness of her '2 cents' but as they say 'ignorance is bliss' and at the moment she is blissfully ignorant of the devastation RA can cause. With time she will become more understanding of the war we are fighting.
Pam
Ari33,
Are you for real? I mean, are you joking? I am actually embarrassed for you. I hope for your sake, that you never have to endure what so many people here have to endure. For many of us, this is the only place we can come to where we can be ourselves. I try to keep a good face for my husband because most days I'm hurting so bad, and I'm so tired of it all that I just want to sit and cry. I try not to show my pain in front of my children because the pain is constant and I don't want them to be hurting for me every time they are around me. And yes, sometimes I do feel "sorry for myself". I'm allowed.
I don't know you. Maybe you are a compassionate person. You could try conveying that in your messages. Or maybe you just wanted to get a rise out of us. I have an idea. Try putting yourself in someone else's shoes.
Ok, so people with RA are incapable of appreciating the small things in life and are unable to look on the bright sde. Wow that is news to me. RA sucks, suprise suprise, but life doesn't unless you choose to let the disease affect you that way. Attitude DOES have an affect on pain level and disease activity. Poor Poor pitiful me is ok for a few minutes but there is a huge overtone of that on this board. I NEVER recommend this board for that reason.
It is really sad that a poster would be attacked for expressing an opinion that doesn't toe the assumed company line of this board. And this isn't the first time I have seen it happen.
Its an amazing world, even with RA, take time to appreciate the good things and not wallow in the not so good. Wishing that people would have bad things happen to them and cheering about it is horrible and so juvenile. I can't believe an adult would behave in a manner we would punish a child for.
And before I get trashed, which I fully expect to be, I have had RA for over 20 years, have had 6 seperate joint replacements and I am active in new patient education..which is why I;ve been reading this board in the first place, to see if it qualifies to be on our recommended list....it doesn't
Buckeye,That may have been your point but if the idea she expressed wasn't a problem you are making an awfully big fuss over the choice of words. Of course , you didn't address the posters who said that the original poster didn't know what she was talking about, or that she didn't have enough 'credentials" to suit you all. How about the posters who wished that she would get sicker? Even you couldn't respond to my post without calling me stupid (thick skull)
Why can't this board have a difference of opinion without going into attack mode? It seems as if you can only offer support to people who agree with the negativity? How does rudeness, name calling, and harmful thoughts equal support?
I don't know about anybody else but sometimes you gotta just love this board.
I'm beginning to think we've been trolled.
"In Internet terminology, a troll is a person who enters an established community such as an online discussion forum and intentionally tries to cause disruption, often in the form of posting messages that are inflammatory, insulting, incorrect, inaccurate, or off-topic, with the intent of provoking a reaction from others."
http://en.wikipedia.org/wiki/Internet_troll
Ari's post really angered me. I don't like to wallow in self pity but I wonder how she would do if she lost the job she went to school for 15 years that she loved, her income went from 90k combined with my hubby I made 50 K and now we are below poverty level and do not know how to keep my medical insurance. I wonder how she would handle being a lover of the outdoors and a very competitive athlete who now cannot get out of bed alone, off the couch, it is so painful to walk with a cane that it is a major task to go to the bathroom, who graduated with a 3.98 who now cannot even read a book or remember my last conversation. Positive attitude - how about compassion. I have compassion for every person on this board because all of their lives are on the line for what RA will bring, and moderate to severe, bs, I know moderate to severe, I live with it everyday and my fingers hurting mean nothing to me as the pain in the rest of my body keeps me so drugged or focused on what worth I have to my family on a constant basis. Screw you RAII thought about that too, Lynk. It did seem to be targeted for a reaction which it certainly got.
Here's my problem with it and with anyone who considers this just some kind of negative attitude board. I come here for support. I've been to other boards that are a whole lot "cheerier" but they have no real substance to helping people with the problems that they are facing.
That is not the case here. Someone is always trying to help other humans that are hurting. And that is whether the problem is RA or something else.
If this board is not positive enough, then I would think you should take on some more responsibility to make it a more positive atomosphere by posting good things on it. We love good news. We love to hear that our friends are doing better.
But we also need to have some place to come and ask questions. Where else in the world do you think I have to come and ask about disability. Or, when I'm having symptoms that I never had before there is nobody, a lot of times not even a doctor that gets it.
This is a great place to be. It's why I come back. What I really hate though is people who say that just thinking positive will make it go away. I put everything into the hope that I can overcome this. Hours of efforts, exercises, medicines, consultations, money have been thrown at the problem and I'm still losing ground. And, the doctors are not surprised. It is the way it is for some people.
But I fight for every inch of life I can get. I hang on to my dreams and I make new friends here and elsewhere. I've learned to love beyond the limits imposed on my body. Yet I am tired of those you say the right diet, the right herb, the right attitude is what is going to make me well especially when they still have their house, their job, their husband or boyfriend, they can walk, they can sit, they can cook. I will protest when someone is turning their nose down at me because I am sick. That's what we are upset at because we face every single day out in the world. Here, we are allowed to let the pain show. That is very therapeutic and sane and I, for one, am not going to apologize for the need to do that.
NOne of us can know what anyone else is going through in regards to RA and other things in our life, and compassion is a valuable and necessary thing, but not all of what the poster says is off base. One thing I have learned in my journey to manage pain is that the more we let pain and sadness dominate our thoughts the more entrenched the pain and sadness will become. Yes, it's hard and I don't always win the battle. I hate this disease as much as anyone else, but here is a list of the blessings it has brought me also:Dear ari33,
I am glad you are able to keep your chin up and keep on going. I admire people who have the strength of will to hang on to the life they have built or are building.
You are 7 months into this disease. It is a progressive illness. I am 30 years into this disease, I have mild to moderate RA. I also have 2 elbows and 2 knees that have been ready for joint replacement for some time. I can't keep up with my 84 year old MIL - she had her bad knee replaced last year.
I have worked my entire adult life. I have done really well. But disability looks pretty good to me, 'cause I know I can't make it another 9 years, so do my employers. My reputable company will toss me out one of the days, because I am not the super employee I was. I do my best to keep my chin up, but half the time I'm leaning that chin on my hand because my neck hurts, but only half the time 'cause leaning on my hand makes my wrist and elbow hurt and sometimes my TMJs too.
You are like the young mother with a 7 month babe telling the frazzled parent of a teen that has gone off the deep end, that they need to have a better attitude and if they did everything would be OK.
I wish I believed you.
I think everyone has done a great job of expressing themselves on this board. As far as this board being nothing but negative, don't read what you don't want to. Some days I can't handle anyone's problems but my own. On those days, I scan the board, read what appeals to me and post if I want to. If I don't feel like listening to someone else vent, I skip it. If we all tried to tackle everyone else's problems, we would be miserable. Fortunately, there are several of us on here and when one of us doesn't step in, then someone else will. I visit one other RA board, other than RAsushi =). The other board meets my needs sometimes and sometimes it doesn't. Instead of complaining, just move on if we don't do it for you.
I come back day after day because there are amazing people on here. The majority of the people would do anything within their power to help you....I need that right now.
Also, we do celebrate the good stuff. I remember when I got approved for financial assistance for my Enbrel. it was like a party on this board. So.......we do it all, the good, bad and ugly.
Lori
How does rudeness, name calling, and harmful thoughts equal support?>>Right now I & many others do not have so many blessings that we can focus on. <<
That is a mind set (attitude) and has nothing to do with life circumstances.
We're here, we're breathing, we have a computer which means we have enough money for electricity, which means we're eating and staying warm. More than a lot of people have today.
So watchingwolf, are then the only people qualified to speak on the results of having RA people who have let it ruin their lives? or someone who is jobless, on disability, sick from ther meds. Well, I beg to differ, anyone with RA is qualified to speak how this disease affects them and of strategies they have learned to cope. Everyone's experience is important whether you think so or not.
Instead of asking the original poster questions to clarify her experiences or posting a well thought out response that would have generated an interesting informative discussion you and others attack like your experiences, outlooks and anger are the only acceptable ways of dealing with RA. I really am sorry that so many of you are angry and down. I really am. But the RA is not going away. So sooner or later you will have to learn to accept what is and go on with your life. Hopefully finding something good about it. If you can't that is your issue and you shouldn't take out your anger on people who have learned to accept the disease
Buckeye, if you have read ANY of my posts I am the last person anyone would describe as down or defeated or angry. I just hurt.
On the other hand I delight in caring for my kids ( you realize I am raising 2 babies ) I have hobbies and friends, I adore my very supportive husband.
I have strived to be positive all my life and a person others can turn to.. Every now and then I do get agngry, but at specific circumstances such as this TROLL.. now that I can see it...
This person seems to have wanted to deliberately turn the people here against each other...
We all deal with our lives in the ways that work best for us. Some people seem to have a more pessimistic outlook. they are not wrong, but they can be harder for people who are more positive to relate to.
This is a support forum.. people just don't NEED as much support when things are just peachy.. I have gotten much support and understanding here. I have learned a lot. But I have a right to get angry at someone's insensitive pronouncements.
Hmm......................... I think we all have been PUNK'D!!!!!!!
Havent you noticed that ari33 or whomever the hell hasnt been back?? They are sitting back laughing at what they just did!!!!
I started reading this thread and got so pissed I saw RED!!! But as I kept reading I noticed that ari33 doesnt have the BALLS to come back and defend herself. If this is a real person I dont believe she has RA at all!! In one finger???? Sorry you ass you just dont get it in one finger. If you really do have it you're in for a RUDE awakening!!! You need to read up on this disease a little better before you come on here to start sh*t with us. Again, if you are a real RA sufferer
You just got schooled by everyone on this board!!!HA!!HA!! Dont mess with people who live and have lived with this disease for years. This board is for people helping other people. People with compassion for the people with this disease. We are all in this together are there for each other for anything that goes on in their lives. RA affects every aspect of our lives. Im very happy to have them to listen to me when im down and need some advice. Too bad you had to come on here and get things stirred up or maybe we would have been there for you. We dont want you here!!!! You are a fraud!!! Now be gone!!!
I think it's easier than the self-pity, I'm going to try and get disability scene that I see going on here the times I do find myself "lurking in the shadows".
Like Katie said, above are the criticising, degrading, and hurtful words written by ari33 that are absolutely not what compassion and understanding is about! We on this board were accused of self-pity and I'm going to try and get disability scene. This statement has nothing to do with just letting us know how ari33 plans to deal with their RA. All they had to do was state how they were going to tackle their Dx of RA with a positive attitude and everyone would have been chiming right in with support. Instead we were criticised and degraded for our decisions made in tackling our own RA.
You go momofthree
woah woah waoh now. Lets not put words in my mouth. All I was saying is - is that specific line of text is what people were upset over. I did NOT say that it was critisizing(sp) or degrading or hurtful. That is your opinion. I'm not stirring the pot here, leave me out of it.
Sorry I meant that you were ONLY referring to that line as what has upset people. I don't always think like I use to any more and will try to keep my brain on a better track.
It is quite obvious that ari33 has done a great job.
LoL It's okay. I just don't like being in the middle of dirt anymore. Hehehe :)OK, OK, OK, uncle.....I think we all got punk'd. Especially me, since I have posted and posted and posted to this. I say we call it good and move on. Enough energy spent on this crap!
Lori