I found this site I was like OMG!!!!!!! this place is great , everyone seems so nice and helpfull this is like a big family of people that uunderstand and talk and support. Is it my imagination which I hope it is or does it seem like the same people only talk or comment to certain people? How long before I get responses to my posts? at lesast more then a few. It probably is because my posts are of no relevance to this site and I am not one of the "family" yet but I hope i can win yall over and yall will try to get to know me too. It seems like it would or will be a very nice place to talk. Thank you for at least hearing me. and I am not trying to be rude by no means I just dont think some people realize this
OOPS! Sorry. If I don't answer, it's usually because I know nothing about the topic. Please stick around and give us another chance though, k?
Linda
i'm pretty new too and have found the posters to be helpful and informative. all m.boards are slow on weekends, so try to be patient as they are probably just getting out of bedI must admit I have felt very welcomed here. Sometimes I am overwhelmed at how many responses I have had to my posts. My schedule doesn't allow me to visit the site on a regular basis, so I find it hard to keep on top of all the responses.
Like Linda, I tend to read only the messages with topics that touch my life or which I have some experience with. I regret I don't have time to view every post.
Please don't give up.
I read most of the messages, but when they are about say questions about some drug I haven't had any experience with, it's like, what's the point of leaving a message just to say, I don't know. Although I do that alot too. And I guess it's pretty pointless.doobgirl32 - have you posted an introduction yet under that topic? When I first joined a few months ago, it was the first thing I did as I was reading the "suggestions" on how to get started. And I was a little hurt that the fellow posters below me and above me all got welcome aboards and slaps on the back and a big zero kept going on my intro. So, I pulled on my big girl panties and answered myself and got the ball rolling.
This is only in my humble opinion, but it is my observation that we have a large community, which is a cross-section of any part of the world. Some of us are vocal (post), some lurk (to learn), others stir the pot, some are experts with great advice, a small number of pharmaceutical, insurance, AMA, and government spies, and everyone of us is worried sick about being sick. And I think there are a number of posters who are home confined, or wheelchair confined, or bed confined, and so have the time to post alot and have formed deep friendships over the years.
It takes time to break into any new circle of humans, so let us know about you, and you will be shocked at how caring the great posters in here can be (and use the ignore button when the in-fighting starts) LOL Welcome aboard - Cathy
Hi doobgirl, I think I know what you are feeling. When I first joined I'd never belonged to any board before. I didn't know what to expect. I felt like you that there was some 'inner group' that 'talked' to one another. I got some really helpful responses and wrote PMs to them.
I was in such terrible pain I feared people would be turned off by such a downer. But, they all seem to understand. They'd been there done that! It really helped me find people with such compassion.
I don't respond to political stuff or exchanges that seem unpleasant. Some of the Ot's don't interest me.
I'm new to a lot of the drugs that are prescribed for this disease, and have found the info about them soooo valuable. I guess it takes time to figure out what works for you on here.
Please feel free to Private Message me anytime, I really like them. I'm glad you wrote what you feel, that's important to know. Looking forward to your posts/questions/responses. Lynda
Hi Doobgirl...welcome!!Do not give up. There are some great people here. I do believe some are very reserved to put there emotions out there. We do not know what kind of day they had or how their meds may be affecting them. Some people are just rude but here they are allowed to be if that is there opinion.
I enjoy being here and post pretty often. There is comfort in OUR groups understanding of each others problems.
Again Welcome.
thank you for all your responses and I will not give up. and i do understand people do not have good days as i havve lived with this 4 yers now only been on decent meds for 1 year and then the plaquinel and naproxyn were not weorking and was having major flares for the past 6 minths. just recently changed drs. then was afraid to start the mtx with my stomach problems acting up as I also have celiac disease and gerd but thank you and will keep postinngI'm pretty new here too....I do alot of the lurking (and learning). I don't know enough to post much advice, so I stay pretty quiet.
But welcome to the board!!
Welcome! Are you gluten free? Has that helped your RA?
Cathy - there's an ignore button!
Pip
Welcome to the board, Doob. Just keep posting. You will get responses. As with anything there are people here that are more familiar with each other but I feel that you'll find the group as a whole is welcoming, informative, concerned and very helpful. I know since joining this board I've learned a lot about having RA.
Again, Welcome.
Hi Doob, I'm so sorry if I haven't welcomed you. We really do try to welcome all the new people who come here.
We have had a lot of new posters lately, which is wonderful. It makes for a board that has lots of opinions and different types of people. There have been a lot of laughs here lately, too, which I enjoy very much. We try to keep our senses of humor. It helps to get thru the hard times.
I'm not sure if I have ever started a thread, but try to answer as many as I can, if I feel I have something to contribute. So keep writing! If you don't get an answer right away, please don't feel bad. It is usually just that we have nothing to contribute. Or maybe are having a bad day and can't quite compose an answer.
Welcome! We are happy to have you with us.
Hugs,
Nini
I am sure I am not glueton free. I tried weighing the choices and I find I dont eat enough to loose weight I find myself not eating it is very hard to be gluetion free alot!!!!!!!!!! of foods have glueton in or on them but i try. I regress once in awhile. a gluton free diet is very expensive crap even regular bacon has glueton on it ,and its already expensive try buying glueton free products or all organicdoobgirl32 there are other websites to try out also.Hi,
I'm sorry I haven't welcomed you before. I haven't been feeling well so I haven't been checking the boards much. This is a good and helpful group so keep trying! Welcome! I hope you find a lot of support here.
Laker
Hello Doob! I see it says you've posted 10 times.......I've been really swamped with stuff lately, so I guess I missed out on your first posts. Some days this board gets so busy, it's hard to keep up. Like someone else said, there's a lot of meds and stuff like that, that I don't really know anything about, so I tend not to post about them. But anyway, it's always nice to have new people! :)Doob -
Try www.celiac.org. I've met people online as well as have seen posts from people who have REALLY improved their RA with going gluten free. I tried in the beginning but gluten does not appear to be a factor for me...altho I'm going to get the allergy tests to be sure. :-) Anyway, I know what a pain it is to get all the gluten out of your diet...but it will probably make a major difference in your pain levels.
I've been told now that a lot of foods are now gluten free and are really quite tasty. I think Oreo's are an example (oh God, don't quote me on that). Anyway, there are tons of posts on what is and isn't a good food product so you aren't wasting your money.
Pip
Pip, nah, there isn't an ignore button, I have started a list of posters I don't respect so just ignore their posts. I have to edit my post above, I forgot the AMA spies. LOL Cathy PS I have felt nothing with the Minocin, maybe today a slight lifting of feeling a little better, but thats is. But this low back problem is serious. I think its from the terrible chair at my new job. But we do what we gotta do. Hello and welcome! I have found very friendly people and advice here and I look forward to reading and responding to your posts. Cathy, do you really think there are "spies" here from the drug companies and AMA? Not that I would be surprised about the drug companies. Very sad if there are.Hey Doob and other new members, I'll 'talk' to anyone
When I first joined I thought that posters seemed to stick to certain groups, I think this applies to any forum and I guess people just get to know each other and look out for their updates. It really isn't personal - IS IT?
There's also the time zone factor so we're all awake at different times.
Hello and welcome! As you've found out by now, you will get responses, sometimes it just takes a little longer. The time difference is also a factor since this great board is even seen in the UK and Austrailia, how cool is that? Sometimes when I go to bed there's nothing new to read and when I wake up, it's like an explosion of posts.I am so sorry Doob. I have been posting for all summer and have felt the same way you do. I do not get very many responses to my questions, and because my pain level has been so high emotionally I have not been up to it. Cordelia, Lynda, Mona and Pip are probably the best as far as support and I do PM them a lot.
Do not be afraid of the MTX. I started out with Plaquinil in 2004, and had a massive reaction that almost put me in the Hospital (my husband was deployed at the time) so I told the doctor that was not going to happen. He then informed me there was nothing wrong and to come back when I was actually sick. Guess what I got actually sick during the fall of this year after I buried my dad with this disease. I went to a different doc., and he is slow to react, partly because I have so many allergies.
I guess I am saying this, because I know what it is like to go through the ringer, and MTX really helped some, but I have added a biologic too.
Go to your doctor very informed and with a list of how you want to feel. We have slowly worked on things since Feb. Right now I am not feeling the effects, because I have been sick with a sinus infection. But I will still go on Wed. with my own agenda. I am going to get my ankles xrayed this time and we ARE going to talk about Amitriptaline. I am tired of the Vicodin. I also need some more depression support.
I am sorry I wrote a lot, but I hope in my ramblings it will help you too. Take care, and thanks for sharing how you feel, I appreciate it.
' Hi Doob and welcome to the board! Sorry I missed your post or I would have welcomed you earlier. You will find that I'm pretty dingy at times
I have found a lot of wonderful help and advice here that I'm taking notes on so I'll be prepared when I see the Dr.
After reading your symptoms and the drawing of your muscles I'm just wondering if your dehydrated from all the diarrea(sp)? How severe is it? You need to drink plenty of fluids anyway. Good luck to ya and hope you feel better real soon.
P.S. Sorry but I snicker everytime I see "doob", thats what my generation called weed back in the day..."smokin' a doobie"
ty
moana thats probably actually where the name originated as right out of high school I named my bestest dog that and have used the name ever since. He was an unusual dog, a shih tzu, he would run outt the door at every chance usually every morning and go around the corner to visit my inlaws lol who would let him in and keep him till i came round to collect him.also he grew up with a pet skunk whom the skunk thought was her mommy.crazy pair. the dog would lay down and dig sideways. and him and the skunk lovwed to ride in the car together in the back window. We got some really crazy looks from people
LOL doob, sounds like a fun pair!! A pet skunk? How neat! How'd that happen?
Mary, absolutely. The purpose of the AMA is to employ doctors, not help sick patients. Just like the NEA's purpose is to emply teachers, not educate children. Monitoring boards like this helps gleen out trends, new ideas, etc. You bet we are regularly monitored by all or either of drug companies, the FDA, the AMA, insurance companies (I would bet almost ALL of them), AF, rheumatologists, etc. I think the term in corporate America is "forward thinking". LOL
Doob -
I know nobody believes it - but I really try to stay out of anything not related to AP. :-) I can't help at all with any of the tradition meds and the only thing I tried was Predisone and that made me worse - but most posts here people got a lot of relief from Pred.
Linnncn -
Up until maybe 10 years ago it was really, really hard to find people on AP and info on how to make it work for you. There was once a post on the RB about 'where would we be without the Internet" and the response was "we'd be dead". And up until recently most APer's stayed on the RB. Why go to other sites and get jumped on - like the aforementioned AF? But people who post on one board probably post on others and I'd say the info is getting out. And it's spreading like wildfire. Even if people don't get on AP - they know it exists as an option and they know where to go get help so it works. Information they are NOT getting from their doctors.
So...what happens if enough people get on an off-patent drug? A drug that will still work if you are taking the generic? The change in income to a pharmaceutical company would be astronomical.
And why are there Anti-Apers? Real people on ANY meds know that the med can fail. Heck, APer's worry about that which is why we do what ever we need to do MAKE it work. Real people who suffer from RA, Lupus, or any of the host of autoimmune diseases are HAPPY there is another option. Haven't I said that if AP EVER fails me I'll get on the biologic ladder?
You'd think with a trend like this showing up on the radar Big Pharma would be rushing to study the infection connection. But while there are some studies...there are not a lot...and only one since my diagnosis has even USED the word "cured'.
Pip
I KNOW there are people from pharmaceutical marketing companies at leastWhy does every thread have to turn into this stuff? It's getting kind of old. I'm sorry but that's how I feel. - No wait. I'm not sorry. You three continually hijack other peoples posts. Every time I see this thread bumped, I'm hoping to see a response from Doob, or someone else offering advice to her, but instead its MORE of this stuff. I don't mind you talking about it but PLEASE, can you start your own thread???
Doob - how are you feeling?
Im new also, have posted some topics and got some active responses but I have very litte time to spend here so maybe I never read your postings. Welcome, hope we can keep in touch and help you anyway we or I can. Bearbeall So sorry Katie, I won't ever post again.Don't be so dramatic. You can post and you know it. Just keep it in the right place and stop hijacking new people's threads for your own agendas.
Thanks.
Hello bearbeall!! Welcome!! :)
Hi Billy, been wondering how you're doing.
Doob, don't ever hesitate to ask questions. You'll find your answers, there will be members that will answer you. There will also be a lot of posts like you see above that aren't relevant to the questions that you asked. Sometimes it becomes a real mix up on the threads. Bear with us.
Katie -
Stop being a twit. Somebody asked a serious question. People responded with their take on it. If you're going to jump on somebody you COULD have jumped on the questioner. Instead you jumped on that 'answerers'. You are the one that is always knocking down people. All because you lack hope.
Don't shoot the messangers.
Pip
I don't lack hope. I lack patience for crap. You and our cronies decided to take ANOTHER thread and rattle on about how the big man is always watching you. Get over it, or post it somewhere else. I really hope you didn't scare off ANOTHER new person.Be grateful I didn't use the past tense.
You lack hope. It shows in every post you make.
Pip
Past tense of what? Ya lost me.
I don't lack hope at all. You think that just because I don't think AP is the ONLY friggin answer? wah. Again, I say - GET OVER IT.
You know, ariscowell, your aggression, hostility and control freakynessty
moana thats probably actually where the name originated as right out of high school I named my bestest dog that and have used the name ever since. He was an unusual dog, a shih tzu, he would run outt the door at every chance usually every morning and go around the corner to visit my inlaws lol who would let him in and keep him till i came round to collect him.also he grew up with a pet skunk whom the skunk thought was her mommy.crazy pair. the dog would lay down and dig sideways. and him and the skunk lovwed to ride in the car together in the back window. We got some really crazy looks from people
[/QUOTE]I was talking about how you three paraniod suckers keep hijacking posts to talk about how "everyones watching" us. It gets old. Real old. I've never ONCE not owned up to the Roxy crap. I let her have it, and I own every last word of it. So don't even bring that up. As far as you not liking my personal posts, once again, that wasn't the issue here. I LOVE how you three like to turn sh*t around to make it seem like you're sane. It's incredibly funny.
STOP BEING SO PARANIOD AND SCARING THE NEW PEOPLE.
End of discussion.
Hi Cathy, Pip & Gimpy - glad to see some backbone on this site, agree completely with all you have said.Of course you do Cassie, you love anything and everything that goes against me since I didn't stand up for your little buddy.Doob -
Hope you stick around. You have to excuse Katie. She's 23 going on 13. Kids! What can you do!
Katie -
You've hijacked a newbie's thread. You are spreading discord. Hopefully she doesn't leave because of you.
AP offers hope; it is not the only thing that does. Hope is internal; something inside. Some traditional med people have it. Some diet/natural remedy people do. You do not. Again, it shows.
And what good is a slam if you have to draw circles and arrows so the slamee can figure it out? Past tense. If you still can't figure it out in a month - PM me.
Now, knowing you have to have the last word in order to feel 'adult' please feel free to continue in this vein. OR you can have attack of maturity and start PM'ing me. We can continue to verbally smack each other in private. What a concept! Except that's not how you operate, is it?
Pip
Thanks Cordy,
Doobgirl I really hope you hang around, there is a lot to learn, and I can say that I have learned a lot about other people and myself through this forum. I guess it is just like everything ignore the bad and focus on the good.
Take care of yourself and let us know how we can help you.
Well put Cordy!
Doobgirl, There's a lot of information out there for you. A lot of it can be confusing however thankfully there are boards like this where a variety of people have different information to provide you with. Take from the board what works for you. Don't be afraid to ask questions, share personal information regardless if it's about RA or not. RA is just the one thing that links all of us together. I hope that you do stay with this board because regardless of the "family" feuds that go on at times, there are a lot of helpful people with some good information and advice. I've learned a lot in the short time I've been a member here. I've learned how to pace myself with my RA, my different treatment options for my RA and how to control my 2 yr old's temper tantrums.
I hate bullies and injustice Katie - that I understand.
I haven't been around lately so I'm a little late on my welcome. Although there is a certain amount of ugliness that seems to continue to linger here on AI, it really it a good place with a lot of caring people and great information. As for replies to your posts, sometimes you will get a few and somtimes you will get many. It's nothing personal...it just depends on what the post is about, who is around and if they have anything to offer. If you're here, you're already a part of the AI family.
Peace & Love...Neasy
Thank you Cordelia...that needed to be done!
Janie-Thanks for the update, I still care.
Doobgirl, You haven't been able to get a word it, have you? I hope you are still with us. If so, will you start another thread, so we can get back to your original question?
PEACE
Hello doobgirl and welcome! I do try to at least welcome all the new people and contribute what I can to as many posts as I can. I use the computer at work though and I am not on line over the weekends! I hope you are able to ignore the bickering and decide to join us!! Welcome to the Funny Farm Doobgirl. Glad you're here.