Joonie - I know you have had some harsh comments directed at you the past few days, and I wanted to say how much I enjoy your posts and your humor is hilarious. You are a brave woman to endure your lifetime of pain and suffering, and to come out with a sense of humor is amazing. Take a couple of days off from the board, but please come back, because I know alot of us will miss you. Love Cathy
ME TOO JOONIE, I miss you tonight already, please come back to us
Joonie I know you'll be back and you know we'll still be here to give you advice and chat with you. Nothing's changed, except that we know you need help in areas, and you ASK for it. And we're giving it now, whether you like our answers or not.
< =text/>_popupControl(); Hmmm...I did not feel that I was being harsh. I am by nature not a harsh person. I did voice my opinion and I do have the right to do that. How people handle that opinion is out of my control. I prefer to have a nice rational discussion if someone does not agree with my opinions. Maybe I can learn something by looking at a situation from a different perspective. I will not apologize for what I wrote because I am of the opinion that labeling people for their sexual, religious, or whatever kind of preference they have is just wrong. Assuming someone is a homosexual without actual proof in my opinion, can cause a whole lot of problems that neither person would really want to deal with.
I do not expect people to agree with what I have to say 100% of the time and I welcome opinions to what I have to say because of as I said before, maybe I can walk away with having learned something.
I do not want anyone to leave the board at all. And truly, that was not my intention. Sometimes the truth about yourself is one of the hardest things to accept in life. Goodness knows I have been there done that several times in my life and over the course of my marriage.
June will most likely come back when she is ready to come back. When she comes back, things will go on as they did before. I will be here to talk with her, chit chat with her, support her and give my advice and opinion on things that are posted. If I feel that some tough love is appropriate, then that is what I will do. She is free to handle that in any way she wants. Goodness I have had the tough love from people on the board many times lol. She can always PM me and talk with me about the situation at anytime as she knows that any PM's would be kept personal and confidential regarding this situation.
YOU ALWAYS MAKE ME LAUGH I HAVEN'T BEEN ON HERE VERY
LONG BUT I ENJOY YOUR STORIES AND YOUR WEIRD SENSE OF
HUMOR. JUST WANTED TO SAY HI.
HOPE YOU HAVE A GOOD NIGHT WITH EVERYTHING THAT HAS
BEEN GOING ON IN GENERAL. GOOD LUCK!!!!!! Perhaps her new cat ate her computer mouse.
I can't believe I missed something, again!
I don't know what happened, but I didn't see anything from Joonie today, which is odd, indeed. She is one of our most proliferative posters!
Well, I guess I'll read about it sometime, but I do miss her posts, as I would any of you who were not here, suddenly.
Hope everyone is okay. I sure would hate to see a repeat of "the dark times" of AI.
Hi joonie- where are you.................. Gone to Freak-mart again??? Hope you get home soonoh and very well said once again Momma Liz, I too have no reason to appologize for anything that was said.
I do not want anyone to appologize.
Yeah... Liz, you make me out to be a racist or something. I am not. It was a joke from a few months ago. I even said my own non-gay brother was gay. I do have a gay brother, and I love him to pieces. He is my favorite sibling and I love his partner. They are the best people I know.
Like one time before You thought I was dissing my at the time soon to be RD because I thought she was from india. I was quite excited about her being from there as they are very very smart people. Both of my kids have ped's from india and we chose them over the american dr's any day. My crazy uncle he had an internist that was from india... she kept him alive well pass when he was to die. He had severe serocisis of the liver... vomiting up blood everyday and so on. And when we moved he did not get to keep her as a dr and within a month of seeing an american dr, he died from complications from this liver.
I am not even white. I am a mix of irish, italian, amercian indian, and german. If I tan myself I would look like I was mexican. I love mexicans... I do not know why people have a problem with the mexicans in this country, I have grown up around mexicans for the first 12 years of my life.
I at one time thought I was gay or at least bi. I just thought some women were my type. I mean, I know I would probably never be with a woman, but there were a few women I was obsessed with for a while. PLUS, every since I have known hubby, he and his friends always told me I had "lesbian tendancies". Whatever that means.
And if me posting about my GYNO might be gay on a message board will hurt his career... well... that should be the last of his problems, as if you ask anyone around here what they think about him, they would say they felt he was gay as well anyone who has had him would tell you the same thing.
I do not like GYNOs, hate for someone to "look" at me, it makes me very uncomfortable, so if I keep thinking dude is "gay" then I will not feel so uneasy about going and keep putting off my pap smears and check ups.
I have a natural fear of any one who has Dr. in front of their name. I just do not like Dr's of any kind... so if I am a racist ... then I am racist against anyone with Dr. in front of their name.
None of you know me nor my situtation nor my fears. Just because you can deal with something like going to a Dr. for a pap smear and think nothing of it, does not mean I can. Just because you can go to an RD and not get a little unglued because that results are a needle as your "reward", does not mean I can. The only thing that works for me to going back to an RD is that the reward will be not much pain, and controlled RA and me being fed up with my J/RA.
Now if this was a couple of years back and the talk of a 2hr drip was on the agenda, I would have stopped going. I have and hopefully not do it again, but I cannot make promises. Last 2 RD's I stopped going to because they mentioned the word "injections" and yeah... I was like OH HELL NO! And never went back. But the 2nd round to 1st RD, I had to give into injections, the ONLY thing that would make me mobile and able to tend to myself once again. But Ya know... I can live off of pred, and die before my already shortened time, if I decide to not get Remicade.
No one understands how I tick or even how my mind works. I have ways to psych myself out, otherwise I would never do anything I felt was "not a good idea". Which I tend to think a LOT of things are not a good idea. Like Abi Kitty... thought she was not a good idea, but psyched myself into thinking she was a good idea. Some days... I think not a good idea, and then an hour later I am happy I got her.
Sorry, so long... Just wanted to state I did not want an apology from anyone and to apologize if I made it seem like I was a victim. A victim of having to go to a GYNO. Yeah... I am thinking I am not going this time around. I am just not up to being a cold room, nekkid, and having some strange man feel me up and down and his nurse looking at my cootie as well.
Joonie, you are right, none of us know each other here that well. We can only base things on what is said, and admittedly it is easy to misinterrept the meaning of a written word.
I have just become concerned about you in recent months. You sound depressed, and you don't sound like the Joonie of old. The old Joonie who laughed off the broken elbow as nothing. You still try to make jokes now, but there seems to be much sadness and bitterness behind the things you are saying. Or at least that is how it comes across sometimes. I think it is more evident to those of us who have been here longer.
I know you have had a difficult life and had many disappointments. Children growing up with a disease like RA are robbed of a normal childhood. The weight of that childhood seems to be bearing down on you more than ever right now, and I truly think you need help in coming to terms with your life, as it was, as it is now, and what you want for the future for you and your children.
People do get frustrated when they hear you make excuses for not taking your meds, because they know to feel better, you have to take medicine consistently - it can't be on again/off again. It will never help you the way it is supposed to help you. And if it is necessary to take infusions or deal with needles, you really are going to have to dig deep in our soul and come to terms with that. If not for your sake, for the sake of your children. Fight to get well for them.
You appear to feel very isolated right now, as though no one here understands the pain and disappointment you have, but the people here do understand and they just want you to work hard at getting better.
You have many blessings in your life, and so much to be grateful for, as does everyone here. Please try to open your heart to the suggestions and encouragement given by people who do know and understand- rather than becoming defensive and angry. Don't give up on hope. Do whatever it takes to get well. You can feel better, and you can have a fuller life than you do right now, but you need to reach for it, and keep on reaching for it every day. This is your one shot at life, please fill it with happiness and adventure, and joy.
It breaks my heart to say this, Joonie, but in the last few months you have reminded me more and more of someone you have always been very frustrated and angry with. I won't say the name, but you know who I am talking about. I don't want you to slip that far down - unable to see the truth about your actions. You're not there yet, that's not what I'm saying, please hear that, but you are showing tendencies. Fight to get well, please!
Hilly's quote:
It breaks my heart to say this, Joonie, but in the last few months you have reminded me more and more of someone you have always been very frustrated and angry with. I won't say the name, but you know who I am talking about. I don't want you to slip that far down - unable to see the truth about your actions. You're not there yet, that's not what I'm saying, please hear that, but you are showing tendencies. Fight to get well, please!
Hilly, I could not agree with you more on this one, but I did not want to hurt Joonie's feelings. Joonie, you are a wonderful person and a huge asset to this forum and don't forget that.
Joonie... I am new to the board so I can only report on what I have seen.... I totally enjoy you and your humor....Please don't go!!!!
Hugs to you
Lots of people care about you Joonie. Including me.
The only drs that don't freak me out are the ones you don't have to take your clothes off for like the eye dr and the dentist. I especially hate gynos. Orthos strike terror in my heart, every bit as bad as you are with needles.
Remicade worked pretty good for me. It worked for a long time. The thing I liked best about it was that I usually felt better the day after and I would stay pretty good until about 1 week before the next remi date. How long has it been since you felt good for 7 whole weeks in a row? I really have seen it put people in remission! They got their lives back! It really could be that you will be a miracle child on this stuff.
Joonie I don't know what in the hell happened, but I do enjoy your cyber-company.Hi Ya Joonie, You know that I stay out of these discussions that get personal. Not because I don't understand or have something to add but because you can't respond and have your response be accepted over the internet the way you can in person. So much is lost in translation and that's happened here with this post.
Right now I'm the poster girl (guess I should say old lady) for Remicade infusions. I have my life back. I golfed 9 holes last week and I haven't golfed since 2001. I've been packing, moving stuff to storage, cleaning house - including doing the carpets and floors. I almost feel like superwoman. I've tapered down to 8mg. of Pred!! I know that you want to feel this way and the only way you'll get there is by trying Remicade.
I have a suggestion.......ask your Dr. for a prescription of only #10 Valiums. Take one before your infusion. It will help you relax and you'll not be as fearful of the needle. This is one time that I think a tranquilizer is needed. Think about it and talk to your doctor. Tell your doctor exactly what you've told us.
The infusion nurses are really good at finding veins and they use the smallest possible needles. It's not a huge stick like blood draws or like the monster needles they insert for IV's. These IV needles are small and virtually pain free.
Once you start to feel better you'll wonder why you put it off for so long. Sure there are possible complications but there's also complications from uncontrolled RA.
Do it for yourself, your children, and your husband, your mom and your inlaws. I think you're close to your mom and inlaws and I have a feeling they'll be pulling for you all the way. I know we're cheering you along, how about joining us? Lindy
I agree with Lin. There's a solution here, it's just a matter of you buckling down and doing it. There are hundreds, if not thousands of people who fear needles, but they HAVE to deal with them. At some point you have to ask yourself "is this worth it? all this time spent suffering?" It can't be Joonie, it just can't.
Joonie- I too would miss you. When I turn my computer on everyday from across the pond and log into AI , It makes me smile and brightens my day when I read your posts. I too have noticed an edge of unhappiness about the last few but as we all go through different emotions with this disease I thought it was your turn.
I havent always taken my meds even when I have been in terrible pain, I am not a meds person and have to be forced into it
Please take care and keep chatting
How dare I be compared to that someone else?! I have NEVER been anything like that.
I am not depressed nor disappointed. I am just not doing as well, as I once was when I was on Humira. I am trying to get thru my day the best I can. If it is not bladder infections and mono, it is the constant reminder that we do not have money to pay our own damn bills. It is a constant reminder that I am disabled and cannot work to help pay them bills.
WE are literally living off the in-laws at this point. I have a lot of stress being put on me as of lately. I am flaring non-stop. My knees are shot, my left ankle is swelled EVERY freaking day. And I am only on pred and was on high doses which really mess with my mind.
I am in a slump RA wise right now. I have too much to worry about and I have been to more doctors within the last 6 months then I have been since I was a kid! It really is not a good time for me.
But ya'll would not know that, because I do not post about any of this. I feel it is none of ya'll business to know every detail of my life. I just tell what is RA related and move on.
So... for me to be compared to that someone else really hurts. As I am nothing like that and never will be. Sorry so many of you see me as a whiney, complainer that tells everything about my life on this board, when I do not. But now I have. But what the hell does that matter?
Ya'll seem to forget how high doses of pred really mess with your mind. And how long term pred use really messes with your mind. At least this time around I am not paranoid and think ya'll are out to get me. Oh that was a REAL doozie. And all because of pred.
But thanks for pointing out that the pred is messing with my mind. Last time no one knew, they just all thought I went bonkers for some reason.
I have a lot on my mind and a lot going on with me, which is way more than I tell. I just choose not to post about it.
One day I am weening off pred, and the next I go from 2.5-5mg to 30mg of pred. I am actually suppose to be doing that damn pred taper for 18 days, but since the damn pharmacy screwed up my RX it would make me short before I go for Remicade.
My mom seems hopeful that Remicade will work for me, but I have thought about not doing it... as it is too much hassel. Have to find someone to drive 65 miles and then they put around for 2-3hrs waiting on me. It is just a hassel to me. And I do not have the most dependable people around me either, they got "RA brain" and they do not even have RA.
But anyways... there ya'll know. Happy!?
Joonie we arent saying any of this to hurt you. We all care about you and want to see you feeling better. You are not the same Joonie that you were 6 months or so ago. I dont know who you are now, but you aren't her. We dont like seeing you this way. We dont like seeing you saying that you should give up. You need to do what is best for you health for YOU and your FAMILY. I really think that if you took your meds when you were soposed to got on a biologic or on Remicade you could function like a normal RA'er....I really do belive that. But it doesnt matter what we think...What do YOU want? Do you want to be in the pain that you are always in?
Joonie, please remember that we all do care about you and that we arent saying these things to hurt you.
Joonie, I am sorry you were hurt by what I said. That was never what I wanted, but I knew I was taking a gamble when I said it. I was hoping you would take it as it was intended, an attempt at encouraging you to fight to get well,-- but I wouldn't even mind if you did it because you are mad at me and just wanted to prove that you WILL get treatment for your depression and get the proper, consistent treatment for your RA.
There are so many people here facing the same struggles you are, finances are in the toilet, marital difficulties, and many different RA related medical issues. And everyone comes here to whine and complain - that's what we are here for, and no one was upset about that. What was frustrating and disturbing was your "oh well I surrender attitude" and the fact that you are so young, with so much to live for and you are ready to give up on trying to get better.
The old Joonie would have been upset if she saw someone else just giving up and settling into the role of victim, and would have said something to get their attention. That's what I was trying to do, and I hope someday you will see that.
It is truly unfair for you all to compare Joonie to you know who. Joonie and I both belonged to another board where that person wreaked havoc and in no way has Joonie's admittedly negative attitude been anything like the person you are comparing her too.
AND, if you thought that might be a good way to motivate her to become more positive and keep on with her struggle to get Remicade, well........HOW'S THAT WORKIN FOR YA??????? Since when did insulting someone become a motivational technique?
Frankly, Joonie, you need to get on some AD's and do whatever you need to do to take care of your health and stop saying you can't, just buckle down and grit your teeth thru it. Remicade was the miracle drug for me, I felt the best since diagnoses until I had to stop due to allergic reactions.
I have been a poor single mother raising 2 sons on 800 dollars a month, back in the late 70's. I understand where you come from. BUT, you have to get mad at your circumstance and start kicking ASS.
You are not like ____.
Crispy.................(You used to know me as Sandra) Didn't really want to use my old name here, but you can't let this get you down, let it motivate you.
You are not the same Joonie that you were 6 months or so ago.
[/QUOTE]
I see no difference in Joonie. She seems the same to me
I think most here who have said she's changed, just want her to change. To be more assertive when dealing with her RA.
Maybe we're not trying to get her to change, so much as we're trying to get her to stop running herself into the ground. Perhaps you don't see the change in her, because you do not know her. We DO want her to be more assertive with her RA, because its going to kill her if she doesn't. She's suffering needlessly and as her friends we hate to see it happen. Telling it to her over and IM, or a PM didn't seem to do any good, so there was the idea that if we started helping her here, she would see it more clearly, as other people that she doesn't talk to on a regular basis might have the same advice we did. And so far, that's been the case.
No one hates Joonie, no one's mad at Joonie. We love her and think she's crazy and great but to be quite honest, she's driving her closest friends a little nutty. We want to see her better, like when she was on the Humira. She was so much more happy. Is it such a terrible thing for friends to start doing what they think is right to help save a friend? Maybe it's a little extreme or whatever for us to be doing this on the message board, but you know what, you do what you have to do. Talking one on one wasn't working, so this is the next step.
We're not giving up on her, even if she hates us for it. If she ends up a stronger better person for it, then we did something right.
Since I'm a relative newcomer, I don't know Joonie's history, but three things have become very clear to me while reading these posts: One, Joonie has a lot of friends here who love her, worry about her and want what's best for her. Two, Joonie must be a very special person to have generated so much concern and love among the people on these boards. And three, there are some really special people here who take a lot of time to write lengthy, caring posts to others who need their help here and on other threads. I'm reminded of someone who was frustrated recently because she wasn't getting quick responses to her thread, apparently not realizing this wasn't an IM type of board. So many people comforted her, explained the situation to her and patiently advised her not to be discouraged. Some of those same people are counseling Joonie now. I hope she gets past this latest challenge with the help of her loyal board buddies. She's a keeper.
I'm with Kelstev... I looked and looked and I can't tell ANY behavioral differences in Joonie from now to six months ago.
There is a great saying that when you point a finger at someone else, just to remember that three more are pointed back at you.
I HAVE TO TELL YOU THIS IS THE ONLY BOARD THAT THIS CRAP HAPPENS ON. GANGING UP ON SOMEBODY AND TELLING THEM THAT THEY BASICALLY NEED A ADJUSTMENT . PEOPLE SHOULD BE ABLE TO HAVE THERE UPS AND DOWNS AND IF THEY WANT YOUR HELP THEY WILL ASK BUT OTHERWISE JUST LET THEM BE.......TERESAIf you consider friends coming together and trying to get their friend some help because they know that person isn't happy "ganging up" then you have issues.
The only difficulty I am having with this issue is that I am very uncomforatable with confrontations with anyone, especially all you that I consider my bestest cyber friends
Seeing any one of my new friends I have made here, hurt or discouraged breaks my heart. I hate feeling there are *sides* being taken.
I've read a little bit of the past and I hate seeing this could happen again. This has been the best message board I have ever been on, I have never met so many wonderful people in such diverse cultures and situations anywhere else. It is very educational to say the least
I can honestly say from the botton of my heart I have never met anyone here that hasn't always been sweet, nice, friendly, and helpful. Thats amazing for a board this size! We have good days and we have a lot of bad days, but sharing life with you folks is an outlet for me better than any medicine or Dr can be.
Moana,
You said it girl!!!
Joonie, I have enjoyed reading your posts so much, you crack me up!!!!!
Everybody here has been so nice to me. I love it here!!!
Joonie, I am so sorry your feelings are hurt because God knows we all hurt enough.......
The old issue, was people being sick of a liar, a fake, and an annoying little twit. Yeah, I said it. This issue is friends being worried about someone they care about, trying to help her along.
If that's a crime, then bite my ass. I'm sick of being accused of something that's not even happening. Everyone that's NOT JOONIE CAN PISS OFF.
Joonie - You know I love ya, you know you drive me insane. But that's the way it is, and I don't know how to handle it any other way. In fact, if we were buddy buddy all the time neck n neck I think I'd be scared.
Can't say that about alot of the rest of you. Good job for sitting by and watching others smash into the abyss. *sarcasm*
Love ya Joon.
And one more thing - you know JSNM this wasn't EVER an issue until you sat your fat self down and started this thread. Shouldn't you be out at a political rally with your thumb up your ass pretending to know more about the government than the government does?? You've never said one nice hoot to Joonie (that I can recall) the whole time you've been here, but as soon as there's a possible pot to be stirred, you sure jump in fast with that spoon and whip it up. I love your quote about every time you point a finger, there's three pointing back at you. Maybe you should listen to your OWN quotes and quit pointing fingers at others.
Eee Gads.
She already caused a
As far as I knew, dispite all of these talks on the board, no matter how things were said, Joonie was not mad at me and I was not mad at her. JSNM's post was COMPLETELY unnessicary and she knows it.
How DARE she try to drive friends apart, just because they have a small disagreement? Who is SHE to do that? NO ONE.
MMMMMMMMMMMMMMM......Katie I really dont want to piss offI didn't mean to LITTERALLY piss off......
Katie- You of all people wouldnt attack Joonie , You know that and I know that but most importantly I think Joonie knows it. I think you have seen Justin so ill lately that when you read that Joonie was not taking things as she should your concern became two - fold. You have a knack for being straight talking and that is a good quality, at least you are being true to your friends and caring. I wish Joonie so much happiness as she tries to give us a lot of laughs to cheer us up when we are down, I think as well we arent used to her feeling so down .I think it is time for everyone to just end this thread. Nothing constructive can come from continuing it. It is starting to turn ugly, and that was never what this was about.
Joonie is a wonderful person, and knows I care about her. I have defended her on more than one occasion. I didn't say what I said to hurt her, and I won't beat her over the head with it either. I expressed my concerns, what Joonie decides to do from this point is her choice.
I will not be posting again on this subject, and I hope I will still be considered one of Joonie's friends, but again that choice is hers. Let's not let this turn into a pissing contest, please.