Look grumpy, I'm sorry. I don't always look for the "most nice" way to say things I well missed what you were saying nor have I thought you were I whiner. Of course there are those who have it worse physically and mentally. Once you realize that your life gets a lot easier.
Everyone who is having these "problems" should go to a real support group (not one of the touch feely hospital types but a NA or AA type.) You learn quickly there is only ONE way to get it better.
NOBODY knows whats going on in another's life. Its that no one will ever know what goes on in our either. We had a foster kid who could piss off people just walking into the room. Funny thing is he was a great kid. We had another who people loved turned out he was a sociopath. People who have confrontation bring it on themselves, its that simple. Either they go looking for it or they have an attitude so piss poor about themselves they find it.
I get the joke about your favorite Tee shirt Does someone else who doesn't have an auto immune disease? Do they think wearer of such is trying to draw attention?
We all get it, we really do, I do. Let me know when it seems I don't Grumpy. There are really only a few things that get a strong reaction from me. The "people don't get it" which leads to the people don't understand me" which then leads to the "my life is crappy because of it" which finally makes everything the same size routine sends me. It sends me. Someone on this thread said its self centered, I guess that's it. Its no way to handle a disease, and certainly destroys relationships. You get peoples respect understanding and caring by how well you fight the disease.
Exaggerate their disease? Maybe compared to where others are at or they could be, but more its a case of priorities and what are you doing about it? Hard as it is to believe there are those who take some pills and wait to get better. There are even some who mistake pain and the disease as the same.
So say it and move on. I waited 2 days to get into this one......
Ok. Does anyone feel better? I don’t. I feel like poo. I do not want to leave the group because I do need the support. Now that we are all good and ANGRY, let’s let it go. I suggest a time out. Let’s just end this topic completely. I don’t know about any of you, but I am cried out and I am tired. I may be in need of a nap, but I won’t be able to sleep unless I get some peace on this front first. I am not expecting anyone to apologize, I just want to move on. This has sucked enough of my energy for one day.
I will be honest. My feelings are hurt. Lamb, i would be grateful if you would try to be gentler in how you say things to me. You are witty and quick on the draw and that’s great, because levity is a wonderful thing. But please try to see how I might take what you say as harsh. Like I said before, we can be honest and to the point without being hurtful to each other. I do feel judged by some of the things I read from you. It is hard for me to be open and honest when I am afraid that I will be criticized. I guess what really bothers me is that i dont complain too much, but when i do, i feel like you negate my feelings. Understand that I am speaking only for myself and if you could be a little gentler with me i would really appreciate it. I am not asking you to treat me with kid gloves, just take it a little easier on me. In turn, I will try to keep things in a supportive mode as well for you and for the rest of the group.
It might be helpful if I knew more of what is expected. Obviously we come here for support and education and news. I am not sure that I understand how much negative is too much negative? As you have read above, I didnt think I was being much of a pity partier. But maybe I am wrong on that. I really come just to talk all things PsA so, I don’t know if I should share family anecdotes or funny stories or what? I like researching information and putting it in plain English for people who don’t have the time or patience or health to do it for themselves. I love answering questions about how to do injections and what infusions are like. I like to talk about mistakes that I have made so that new patients don’t make the same ones. I like lfinding cool new research topics. But there are times when I need a pick me up and I want to be welcome to ask for one. I don’t need it a lot, but I do need help sometimes.
I dont know about anyone else, but this group has become very important to me and I don’t want to lose it and I want it to be a warm place to be.
I'll do my best grumpy, but make no promises. I am driven (in everythinmg I do), I make no apologies. Talk what you want here I don't make the rules nor BTW are moderators anything but patients with the same disease as you who have time to spend here. A better title is tattle-tale
Be VERY careful in how interrupt what you read on any message board. This board is international so it gets even more confusing. Slang nuances etc are lost there is no expressions, tone or such (this board lacks emoticons to help) A hilarious sarcastic comment can be missed pretty easily. We are very observant of who is posting and who they are. For the most part these are all real people with the disease. Understand also for many of us, just the typing is a chore, words are left out sentences are chopped thoughts are incomplete. Assume we are all here for the same reason. Don't look for "evil" you will surely find it if you want. As a former drill sgt. college professor (adjunct) if I want to get into the middle of someone there would be no doubt of my intentions.
Also if you need something let me know. I likely can lay my hands on it or someone who can. Secondly research. Thats my gig. I in fact design studies for a range of medical companies. I'm a "statistician" thus I'm highly critical of studies and their source. Much of what going on in our disease area is contradictory on the outside, but the studies are very specific dealing with something that may or may not relate (the mtx studies being one of them) One of the blessings and curses of the internet is the availability of information. The problem is small studies used to validate a theory for a "real study" are treated as equals to the real studies. They are then picked up by "reporters" who quote them as gospel. It cause no end of problems Imagine the person starting MTX who is informed of a study that says it isn't effective against PsA. What effect does that have on their fighting the disease? Especially when there is no such study? There is a small study that talks about a very specific synovitis that says that, but hardly a broad range study. Or my favorite an anecdotal study that makes claims of when P or PsA occur. There can be no such number. Heck half the time P is misdiagnosed. I was told for years I didn't have it. (its not supposed to happen inside your ears you know) One guy says it and next thing you know a bunch of guys are saying it. The problem is there is no research that says it.
I feel like a child whose parents are fighting, they have even started throwing whiskey sours at each other (talk about MY mis-spent youth!) I love you both (all) and want us all to get along. I get what each of you is saying and love you for it. You have unique perspectives and voice it so well.
But I can't help but think of Elizabeth Kuble Ross here: You are at different stages of PsA and at different stages of accepting it or adjusting to it. Think of it as her stages for death; denial, anger, bargaining, depression, and acceptance. I am greatful when I do not visit all 5 stages on the same day but know I spent so much time in denial I am grateful I do not spend much time there any more.
Please keep your own voices, just lower the volume so we can continue to get through this together. I would miss any of you. Now wipe up the whiskey sour mess..........
I deleted my louder posts and I left the last one because it was in a better vein than the others. (I think). I am sorry that I raised my voice and made other people feel as pooey as I was feeling. I was very upset and should have followed my own advice and walked away. Unfortunately, when I am snerking back tears, I don’t always make the best decisions. I know it shouldn’t make a difference but I did get a big dose (125mg) of solumedrol yesterday and it tends to make me really sensitive. I let it get the better of me.
Again, I am sincerely sorry for making anyone feel uncomfortable.
Claire
michael in vermont said:
I feel like a child whose parents are fighting, they have even started throwing whiskey sours at each other (talk about MY mis-spent youth!) I love you both (all) and want us all to get along. I get what each of you is saying and love you for it. You have unique perspectives and voice it so well.
But I can't help but think of Elizabeth Kuble Ross here: You are at different stages of PsA and at different stages of accepting it or adjusting to it. Think of it as her stages for death; denial, anger, bargaining, depression, and acceptance. I am greatful when I do not visit all 5 stages on the same day but know I spent so much time in denial I am grateful I do not spend much time there any more.
Please keep your own voices, just lower the volume so we can continue to get through this together. I would miss any of you. Now wipe up the whiskey sour mess..........
Ilika, I agree with julittle, your story was great and I loved your comebacks. Was there a better way to handle it for yours and the woman's mental health? Probably. Was there a better way to handle it for making a good story? Hell no.
Isn't life about stories? I'm sure the woman was a bit addled. She either forgot about you when she got home, or she has a nice little story to tell her knitting club. No real harm done.
Only thing I didn't like is how much pain your in. :'(. No matter how you look at it, it totally sucks. I don't give a **** if some people have terminal lung cancer and have a better attitude. When I was having a flair I would have preferred lung cancer! I hope that you and your doctors can get control of your disease.