I found this site recently while looking for a place to help me learn more about rheumatoid arthritis, which I was recently diagnosed with. As I've read through the threads on this site, I have been amazed. Maybe because I am most likely older than most of you on here (64 years young), but I have read some things that are quite disturbing. My impression (for what it is worth to you folks) is that many of you quite apparently have too much time on your hands. Think about how much time you have spent on this board reading and responding to ridiculous threads. Yes, I know I have read them myself, but I choose not to respond and will not be participating in this particular online forum. Would your time not be better spent doing something worthwhile? There are many wonderful things you can do with your time to help others. I got the impression that for many of you, this is your entertainment, and to be quite frank, it disturbs me how young people spend their free time. Are any of you concerned about how much time you spend sitting in front of your computers participating in this garbage, when you could be doing something productive?
Newbie11 -
You will find that a lot of us have lost our jobs and really don't have our own lives anymore thanks to this disease. Most times the 'drama' covers a sense of impotence and anger at what has happened to us.
That being said, AI is a wonderfully supportive forum where when somebody does need help or information the people here jump in and help. This is also probably the only place on the net where different types of treatment and different choices are respected. Trust me, you're not going to find that anywhere else.
Hugs,
Pip
Well said Pip,
As others work so hard to try to convince members that other forums are better, this is the only place to be for the best information, support, and compassion. The forever on-going drama is thrown in for free, of course the peace angels hate it and try to convince members it's best to find another forum as they continue to read and participate (and good for them), go ahead to another forum, you'll be back, even those that start there own forums always come back, see how much fun it is on a moderated board, you'll be back, isn't forum freedom a wonderful thing, thanks Pip for speaking my mind.
LEV
I do other things worth wild... like I do things with my son, but he does have times throughout the day where he wants to be by himself or he does not want mommy to "play".
During those times I come on here and the internet and check things out.
What more am I going to do? I cannot do a hobbie I love because of my hands. I have all kinds of crafting supplies and insturments it is just rediculious and I cannot put any of them to good use anymore because of my hands.
I LOVE the internet and being on the computer. When I was a kid I wanted to be a computer programmer. I know a thing or two about computers and fixing them and I know how to run a website and design one. I just do not have energy to persue it right now. Maybe when my RA gets under control again I can do something I have ALWAYS wanted to do and am good at.
But for now I visit here most of my day and if I am not here I am looking at all the cool things on eBay or reading up on the celebrities drama.
Oh and I would also play one of my MANY gaming systems, but yet again my hands/fingers will not allow me to. Pooey!
I don't get it. Why can't you be fixed? My Rheumatoligists have told me that with todays drugs nobody need be crippled or denied fairly normal life. An elderly lady I know has fingers and toes that point toward her knuckles and now works part time at a laundramat. She is always happy and loves the new life that enbrel has given her.(Please, I'm not endorsing enbrel over any other therapy). I'm not down on you Joonie, just kind of wondering. I was so crippled and now I am way far from that. I remember looking at your picture and thinkingthat your shoulders, arms and hands looked like mine but that was then and now I don't look like that. Anyway, just wondering, certainly not being negative. What drugs are you taking?
LEV
newbie11- i'm sorry that all the drama has caused you to not want to participate. i had that same responce when i first joined the board after my dx last year. when the board calmed down about 4 months ago i joined again and started posting. i am very sad that this board has resulted back to the childish drama.
my thinking is there are a lot of people here who do offer support and good advise on many different topics related to ra. i would hope that if you did need anything you know that this is a place to go. good luck with everything and i hope you find support somewhere.
I can see where newbie is coming from (maybe). I have been thinking about this for a while, watching some of the things that are going on here. I come on here to chat but mostly to find information and learn about ra. It's hard not to look at those other nasty threads though! I guess it is human nature.
I would stay on here for hours if I could! Learning is being productive, or helping other people. That is productive. Heck connecting with the outside world is productive if you are unable too. But what I can't understand is why someone would waste their time searching old posts just to attack someone else or bring up stupid things that happened in the past. Bashing other people is not productive. Really in the grand scheme of life do these petty little things really matter??
Move on and be happy in the present
Lev... my hands and fingers love to stay swelled and I cannot bend my fingers to make a closed fist most days especially on my right hand, I am right handed. Most of my finger deformites are on my right hand. I have decreaded bone density in my right hand and getting it in my left hand. It makes my hand lopesided. I cannot do much of anything that requires me to hold something for longer than 10 mins otherwise my hands a stuck in the position. I have little to no grip in both my hands. I know it can be fixed, but kinda hard to when you cannot close your hands to begin with.
I am not on anything great right now meds wise. I was on Humira and done great on it and was actually able to do a lot of my favorite things and hands/fingers were the least of my problems.
I have the deformites where your finger does not bend at the tips of the fingers 3 out of 5 of my fingers are like that on my right hand. There is no way fix that because it has something to do with nerve damage and tendons. It is really hard to do things without being able to bend most of the tips of your fingers. And those fingers if they get bumped or even certain actions causes pain.
I just started Imuran, has been great for my swelling over all, but not really for my hands/fingers. It did help my knees, which is what was bumming me out the most. I take prednisone 5mg and then nothing else that would help with the swelling. Muscle relxers and pain meds.
Remicade... what I am suppose to be on, but have not heard back from insurance company yet.
Newbie
Joonie,
Call on your politicians and if need be set up an appointment so the politician can get a good look at you. Quit waiting and start doing, not many people are going to help you so you better start helping yourself.
LEV
Hi Newbie11,
I don't get online as much as I use to on account of my newly retired husband, the stock market message boards and only one computer in the house. But when I do get my computer time in, one of the first places I come to is arthritisinsight because these are the best people in the world. Sure, there are one or two that can rub you the wrong way but that's life. I've never met anyone here in person, I'm sure I never will, but I consider them my friends. I think they worry about me as I worry about them. I have been offered comfort and wisdom and advice and I hope I've given as much in return. I believe I've learned just about everything I know about RA on this board.
I think it can be said of any forum....don't read the topics you don't think you'll be interested in. You will never find a perfect message board. I hope you'll stick around here. The craziness we've had lately doesn't last for long. It goes in spurts. I stay away from the ones that I know will stress me out.
Lev... I am helping myself. Most of my problems occurred when I was a kid or 6 months after having my son when I had no insurance.
I know it will get better, been there, but it is slow going. I am much better than when I first joined this board in may '05. I just have slumps and right now in one of them. But by the beginning of the year things should be looking up for me RA wise. And then I will not have much time to waste on the boards, but will be able to do things I have a hard time doing right now.
Newbie,
Thanks for taking the time to lecture us. If it weren't for the postings that you are complaining about, would you have even joined? Do you need some information, or just here to give some of what you complain about. Either way, go for it, that's what forum freedom is all about. There are many other RA forums that are moderated but then you won't have the opportunity of complaining as you do here. You and your complaining are welcome here. You aren't going to beleive it but some have actually complained that some of the postings here have completly disrupted their well being, they are definately at the wrong forum, you know, maybe www.shrinkme.com? Anyway welcome and if it is complaining that makes you feel better, complain away, you are just as welcome as the peace angels and all the others.
LEV
well newby 11 as you have only been recently diagnoised ,you seem very aggitated wth your diagnoises.but as your illness progresses the you yourself may benefit from this forum,but untill such time i hope you have a peacefull and painless journey... and learn to vent your anger in a very constructive venture ... take care
Lev, I agree w/ you where you said that those w/ RA now shouldnt have to be crippled. THought i dont know what joonie has gone through I can only assume from what she has shared. When you live w/ JRA as long as Joonie has and the damage that she has endured throughout the years I dont know how much of that damage can be reversed. I guess there is only so much that can be done with the damage that she does have. Also, I dont believe that anyone has said that one board is better then another board. I may be wrong but to my knowledge I dont remember anyone saying that.
Newbie~ The drama that you see is not a normal thing. Sure we do have drama, we're human, whatda expect? But the amount that is going on right now comes in waves...Since we are not a moderated board theres not much that can be done except for everyone to be respectful of eachother which is easier said then done.
newbie11. You are just starting on your journey with RA. You start at a time where tghere are drugs and help that many here did not have. For me it started in 1989. Much has changed. Most people start getting RA much sooner then 64. Lucky You.Come back in 10 years and lets you if your still the uneducated,arrogant person you appear to be. This site affords a lot of information. Use the search buttonOh for the record... I am not crippled... I can use my hands but not as well as a healthy person. I am just a "Dear Valued Disabled Customer"This disease has many faces and not everyone copes the same. My father taught me never to judge another human until you have walked a mile in their shoes. Instead of pulling together and helping eachother the board has taken on a mood of "lets see who we can attack next"
KM,
I'm not ragging on Joonie. I just know that when some things move slow and I get my senators attention (which is very easy at this political time) one call or letter seems to speed everything up, so I was just making a suggestion.
Km, I said that this is the best board, just my opinion, been to many others, boring, boring, boring, small groups with just constant new members in and out. We have AI senior citizens. We have many that have left and come back home and welcome back to them. Even those that thing their is a better forum spend most of their time here, go figure that out. This is the best, the best KM, I said it.
LEV
I know my 2 cents is not even worth the brain activity to conjure it up most times I opened this post when there was just one reply and thought I would post something, but wanted to read what else was going on first and then drove DD to school and voila, the best thing about this board happened, immediate replies.
When I first found AI I was in terrible shape, was getting some relief from Remicade, but had to go back to work and was so scared about how I was going to cope. I posted a couple of questions here. My regular dr didn't want me going on pred because I am already diabetic, but I could barely clutch a pen. I got some really good advice here and went on pred for a year, it saved me and I wouldn't have requested it if the people that had answered me here hadn't been so informative.
Newbie, I know the turmoil that has been going on makes this board look really juvenile, but there are many well informed, well intentioned people here too. When I first joined here all this off topic and bickering wasn't going on. If I had just found this site, I might also move on, but you will not find another board where your questions will be answered so quickly.
Dang, there will probably be 20 more replies in the time it took me to figure out how to spell voila and tell DH what he had to do at the bank, the magic of AI, I'll be 4 pages back.
Thank you for those of you who welcomed me and sent me kind personal messages. I appreciate that so very much. Perhaps I am having some anger and agitation (as someone mentined) at my recent diagnosis and managing my disease. I find myself angered very easily, which is not normally like me, or the "old" me, which I have completely lost touch with. I lost my husband (of 36 years) 3 months ago and have found that I am short-tempered much of the time as well. For those who suggested I'm stupid and judgemental, I'm sorry for offending you. Anna, I really upset you a good bit and I am sorry. Lev, I think it was you who suggested I post at a shrink site. I will investigate that forum now.
millie
Anna,
|
|
Millie, sorry to hear of your loss. Please feel free to stay here and post. It is not all that bad. You have been thru a lot is sounds and I hope you find what you are looking for to help you deal with what you are going thru.
Take Care
Joonie, thank you for your kind words.
You really should stick around. Many of our most helpful and caring members got jumped the first time they posted.
And I so had the anger thing on diagnosis.
Sorry for your recent loss. Hugs,
Pip
Thank you for your kindness Pip. . And yes Anna, I do feel stupid and have for quite awhile. And Lev, you certainly call it like you see it. I have isolated since my husband died and did not take care with others as I wrote this morn. I should not have complained on here or anywhere else. It's an odd thing to have been in my own safe haven (or shell as you will) for some time. In that haven there is nothing you can do to hurt anyone either intentionally or unintentionally. I did learn today that I'm not ready or willing to socialize with the world I don't know if i ever will want that again. I wish you all the best as you manage your arthritis. millie
I have been reading and posting for several years now on and off....forgot my initial username and beganagain.
I just come here, why ?,I do not know. I am not into clicks and here I find that I can state my mind, agree, disagree, gain info and contribute info. I was Dx in 1991. I lose focus now more readily. Didn't realize it till my PCP pointed it out. I do not like that. I hate RA, always have.
The thing is, when you come here everybody knows most of the terminology, knows the pain and the agony of defeat in that not all of us get to the great point of feeling back to normal. SOme do, lucky them huh?
Many have insurance, many get their meds, some do not, like me....but we are not judged because RA and osteo have altered our lives, have changed our lifestyle and filled our days with pain and disappointment.
You get nearly real life feedback, an enormous amount of accurate information and along with that some high tempers, fixit people and tons and tons of support.I do not know about everyone else, but I am appreciative of it all, the good, and the bad.
jode
You are very welcome millie. Unfortuantely it is only of recent that the medical community has accepted the fact that RA effects the brain, it is soft tissue you know. I feel lost most of the time and sometimes even sort of retarded, but at one time I had all my wits about me. I am 50, shi* happens.
It doesn;t mean we are losers, it does not mean we are retarded or otherwisw stupid. We get frustrated, heartbroken and sad about it. Hey, guess what...this is our normal!
Glad I could share some info. I always hope that I can help and not hinder someone.
Jode
Excuse me, but did you guys just shoot a newbie out of the water here!!!!Welcome Millie. So very sorry to hear of your loss and of your DX. That is a double whammy that would knock all the the very strongest down for a very long time.
We are a sensitive bunch, but really we don't consider hanging out at AI wasted time. Even when we bicker badly we can still rally to help 'an RA sibling' in need.
These folks get it like almost nobody does in my 'real' life. I spent almost 30 years alone with my disease. Misery truely does love company (and laughter and understanding).
Come on back and vent whenever you feel like it.
I do speak my mind and I try to make sure that my mind is right when I speak it. When I spoke of the www.shrinkme.com I wasn't speaking to you but rather to let you know that some people would have us to believe that all this drama affects their mental wellness. To those people if they were being honest rather than dramatic certainly need to seek professional counseling at the least. But as you say maybe it is time to seek counseling for your grief, sickness and all other things that may seem to be overwelming, there is certainly no disgrace or shame in admitting that. Someone needs to help you out of your shell. A forum can be good help but should not be exchaned for real people real friends, real family or professional healthcare as some have fallen into that mistake. But as I said before, even if you want to just complain, you are still welcome here. This will not and should not take the place of real. Also, RA is so manageable, it's not really so bad anymore. There are so many other diseases you could have so very much worse than RA.
LEV
I am so sorry for the loss of your husband. I have never experienced a loss so great, but I imagine you must be going through hell.
I'm sorry for your recent diagnosis as well. With everything you've already been through, it's gotta make things extra difficult. I'm glad you found this forum though. There are a lot of great people on here with really good advice.
You are going to have good days and you are going to have bad days. Feel free to vent and share either one! We are here to offer support, encouragement, hope and to help with any questions you may have. (And lots of virtual hugs!!) There is always someone on the board that has "been there, done that" and can provide insight.
As for all the mumbo jumbo that's going on.... I apologize for the disappointment. It seems like every know and then people bring their drama llamas with them. I guess that would be the same anywhere though. Just try to ignore it and please don't feel uncomfortable posting.
I welcome you with open arms and hope to get to know you better and provide any help I can with the questions you may have. Have a superfantastic and extra comfortable evening!
Hello Newbie (Millie)
I am new here myself and was Dx'd almost a yr. ago at the age of 60 yrs. young. I am thankful that RA didn't hit me until later in my life but that certainly doesn't make it any easier to deal with. If anything, its more difficult because usually, by the time we reach a certain age, the majority of us will begin to experience age related medical conditions and RA becomes just an additional kick in the pants.
I visit this forum and a couple of others with one and only one objective and that is to gather and cull as much information as possible to help me make decisions regarding my care. However, I spend much more time at clinical sites (worldwide) researching every bit of info I can find relative to said care. I also do a whole lot of print study (as in medical and other libraries). I am retired now and have this luxury.
I am not interested in the sniping or in discussing politics, religion, sex, or other OT subjects at an RA site, so I just skip over those post topics. At the risk of being verbally smacked in the nose with a cyber bat, I must say that I sometimes become frustrated when I arrive at this site hoping to find new and interesting RA information/discussion, only to see that certain OT posts are being bumped back to the top of the heap. However, as many mentioned, there is more than one RA forum and I'm free to surf where I choose.
Anyway...Millie, my sympathy for the loss of your husband and for the additional burden of emotional/physical loss which one encounters when they find themselves unable, because of RA, to function as they once could. I understand the latter very well.
Take as much time as you need to grieve. Perhaps a grief group, religious person or counselor would be helpful if you are ready to speak with others about your pain. Just having someone to listen and understand can be very cathartic.
If you have questions or concerns about your RA, there are folks here who are very informed and have many answers and first hand stories and experiences with this condition. I hope you decide to stick around so I won't feel like the only "senior citizen" here.
K.
P.S. Edited to include: I'm still 18 and doing the Boogaloo (in my mind). :}