Sick of Martyrs

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   Posted 2/5/2009 9:48 PM (GMT -6)   
read a entry on how fibro has changed your life a little while ago and there were several people saying how it hasnt changed their lifes and how " I would never let it get the better of me "  I would like to say in responce that  Maybe you dont have it that bad, Im glad you are able to cope but spare a thought for others who are not weak and are not giving in and do try but have it so severe they can hardly get up for the toilet.   How many of you out there have trouble just to get up and go to the toilet , let alone getting to the letter box, and who has trouble having a normal visit with people, who has trouble putting a meal together.
Im glad for those that can cope I really am,  but If it was really severe you couldnt,  and I would like to say in passing  " good on you, all those who manage the little things despite the pain and lack of will "         Sue2z turn turn turn everyone have a good day.
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getting by
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   Posted 2/5/2009 10:46 PM (GMT -6)   
Hey Sue2z,
Well I know that you can't be sick of me, because I am not a martyr.  Though there might be a couple of people who may be offended by your topic of your post.  I am not one. 
Fibro still gets the best of me.  Even with medications that do help.  It still sneaks up on me and raises it wicked head.  I do agree that some people don't' have the pain others do, and there are some that have a high pain threshold, as I do.  I can take a lot of pain.  But should I have to?  I can't on the other hand handle the fatigue.  But then you get people who go to er even over a broken fingernail.  Some just can't tolerate the pain at all.  So everybody is different.  And nobody really does know what the other has to endure with this darn disorder.  So being we all have something in common, we still can't compare ourselves to eachother.  Because we honestly don't know what the next person is feeling.  We can't read their pain.
But we do know our own pain.  We know our limitations.  We know what we are stuck with for most likely the rest of our lives.  So don't let these posts cause you to feel bad.  I don't think anyone intended anybody else to feel defensive or hurt.  Like you say, their pain might not be as bad as yours.  They don't know, and neither do you.  Therefore, we can't compair ones pain to anothers. 
I am sorry that you have it so bad.  I use to.  I slept for two years.  That is how I put it, I was in bed for two years listening to life go by through the bedroom window.  I couldn't stand for any length of time.  I had to lean on everything.  I couldn't go anywhere, couldn't talk to people, too tired. 
The doctor finally put me on adderall.  It has saved me.  I can get out of the house now and even go shopping by myself.  So things are better than they were.  Plus I got something for pain.  That helps too.  I still have pain, but nothing like I did before.  I still can't work, I suffer from depression along with the fibro.  But I am a lot better than I was.
Do you have any medications to help you?  What is the norspan patch?  Does it help with pain?  It sounds like you could use something for fatigue too.
I guess I have rambled on enough.  I hope that you feel better soon and that you stay feeling better.
Hugs, Karen turn turn turn
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   Posted 2/5/2009 11:04 PM (GMT -6)   
I was only diagnosed with Fibro a few weeks ago, but I've been dealing with Crohn's for a couple years now, and the "I won't let it change me" attitude seems to be pretty common among those with chronic conditions.  I think there are a several reasons people make that statement.  First, there may be some who have a mild form of the disease, and they can realistically live their lives with very few changes.  Then there are those who are either stubborn or in denial and try to live as if their disease doesn't exist.  And then there are those who mean it in an emotional, power-of-positive-thinking sense- that they won't let the disease change the person they are, even if it sometimes changes what they are physically able to do.
I can see how the attitude might be annoying occasionally, especially if your disease is severe.  But I have to say that others comments about us ("you don't look sick", "my cousin had that, he just stopped eating ____ and was cured", "if you'd just take better care of yourself maybe you wouldn't be so sick", and my absolute all time least favorite, "this is making you a stronger person") bother me much more.

stitching star
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   Posted 2/5/2009 11:53 PM (GMT -6)   
I am sorry your fibro is so bad. Mine currently is too. I fought through it for a LOT of years, but finally it just got the better of me. I jsut cannot cope with the things I used to do. I have had all of the "If you would just_____" , "If you stopped _____", "You can't be THAT sick, you are just being dramatic", "You can do just this one (or 2 or 5) thing, it isn't THAT bad" kind of comments.

If this is making me stronger, PLEASE let me be weak!!!

I have a big problem with people who make a big deal about "pushing through the pain" and then they are in bed for a week and then everyone around them ends up picking up the pieces, where if they just were more realistic and PACED themselves, it would save a lot of people a lot of work/stress/drama.
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Pamela Neckpain
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   Posted 2/5/2009 11:58 PM (GMT -6)   
OMG! If I took Adderal NOW I would snap! It would be so godawful painful.
Adderal is for those people under 50 in excellent health who need it. That needs to be
made perfectly clear.
Adderal DID save my life. Now it would take my life.
Sue -- E-mail me if you would like.
Adderal is very difficult to get a script for. There are some really really really
big hoops you have to jump through.
There may be a lot not said.

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   Posted 2/6/2009 12:09 AM (GMT -6)   
Hi Sue,

If I made a comment that let you to believe my fibro wasn't so bad so I could just manage it...that's not what I meant. My fibro is as bad as anyone on this board. I've been on intensive pain med therapy for a few years now and hate every minute of it. No, the meds don't make me pain free and they never will.

I think the point that was trying to be made is not to let it 'mentally' get the better of you. Sure, all of us have awful days...days where you just don't know how you can take it any more...but those times pass and you move on the best you can. I have days I'm in tears because of the pain and days I can barely move...and yes, times I have to pull myself off the 'thrown' to stand up and it hurts like childbirth...but if I spend my life feeling sorry for myself and deciding my pain is awful then it will only be worse.

That's for me....others can speak for themselves. I am no martyr, Sue. I'm a woman trying to do the best I can with what I've been handed...that's all.

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Pamela Neckpain
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   Posted 2/6/2009 12:11 AM (GMT -6)   
I mainly do not take Adderal because of Osteoarthritis and all sorts of impinged
nerves and bulging discs.

It would help if I had straight Fibromyalgia, (maybe) Maybe that's how doctors' call
tell the difference?

ADD & ADHD is a neurological condition. I wonder if it's a precursor to arthritis?!

I have never had this thought before.


Pamela Neckpain
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   Posted 2/6/2009 12:15 AM (GMT -6)   
oh, by the way ...

I am the one who tends to feel sorry for myself.
Oh yes. Indeed I do.
Am I the onliest one?

Oh dam.


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   Posted 2/6/2009 12:24 AM (GMT -6)   

I am so sorry Chutz, it all came out the wrong way, just had so much thrown at me by do gooders over the years guess im a bit sensataive.  You have always been good with your replies to my posts so im very sorry.

And Pamela im the one who also feels sorry for themselves  always why me, Chutz that may also been behind it.  Guess I will sit back now and wait for the flack.    I really didnt mean for it to come across the way it did,   sorry all

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   Posted 2/6/2009 12:32 AM (GMT -6)   
Dear Sue,

Everyone is at a different place in their acceptance, too, subject to the pain and other "gifts" which tend to accompany fibro.

I agree with you! Sometimes the always "up" response can be downright annoying! I know I for one am not always up, and still struggling through my own acceptance of this dreaded disease.

I think we all ought to be able to come here and air our frustrations - we all need a safe place to do so.

However, tolerance of one another, in light of the world outside fibro, is a very important thing.

I am willing to tolerate your rants, if you are willing to tolerate mine!

I hope you find some relief for your pain, if only fleeting.
Still learning how to manage my Fibromylagia, and all the lovely gifts it brings.   
I had severe spinal stenosis, had fusion done on C5-7, and my life has changed. 

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   Posted 2/6/2009 1:45 AM (GMT -6)   
Suez and everyone, I believe the "real" approach is better than anything. Sometimes things are good, sometimes they are bad. Saying that, I am careful who I reveal my bad days to. Not everyone needs to know I am having a bad day. I try to be the type of person who is not a Pollyanna or a complete grouch, but something more balanced.

But a positive attitude does help with the pain. It does not take the pain away, but it can distract and give you a different focus. I try to practice gratitude and be thankful for the little pleasures. That helps a lot.

Pamela Neckpain
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   Posted 2/6/2009 2:58 AM (GMT -6)   

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   Posted 2/6/2009 7:05 AM (GMT -6)   
Suez: As soon as I opened this forum page, I said YES!!. Then I had to get another cup of coffee to settle in and read it, and the reactions. There is no "I" here, only we.
I applaud you for taking the forum from a totally subjective to a more objective perspective. Because it is what we have in common that makes this one of the better, and livlier forums on Healing Well.
We have all had so much, " you look ok, what do you mean you're in pain",  maybe I could stab myself with a fork,, then I'd look sick enough for ya'll wink and  "it's all in your head", and my all time favorite from a shrink who put his boots up on his desk and interrupted our session to book a tee time at the golf course, "convince me you have Fibromyalgia". Next cell phone call I ran out of his office. I think he was to busy to notice.
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   Posted 2/6/2009 8:01 AM (GMT -6)   
Good Morning Sue.
I did NOT find your post offence at all...just honest.  I have felt like you do many many times, other times I get ticked off with all of the negativity here. It's the constant debilitating pain coming through.  I see you have a form of arthritis like alot of us here, and I think that it gets really complicated when we have other serious issues to go along with the fibro.  Some days..or nights..I am exactly like you put it...going to the bathroom is a horribly painful experience when you cant walk.  And yes...some of us DO have to plan our lives around these afflictions when there are many.  For me, I can wake up in minimal pain..but have it worsen as the day goes on.  There are times it makes planning on hanging out with my kids and grandkids impossible by days end...because I already know that the drive to town and back will leave me crippled with pain for the remainder of the day. Meals are another story...very much as you described it.
I agree with many here who explain that everyone is at different stages of thier illnesses, and when we are having a bad day, it can be impossible to read posts that dont even touch on what we are going through that particular week/month etc
I dont think you should need worry about posting how you feel.  If you are frustrated, or angry/sad and vent about it, there should be no reprimand for being honest.  I for one admire you for that.
Just wanted to put in my 2 cents worth, and give everyone here a healing hug and a God Bless.
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   Posted 2/6/2009 8:34 AM (GMT -6)   

This should be a place where we can all share about our experience with Fibro - either positive or negative.

Just because I maintain a positive attitude does not mean that I don't have Fibro, am not in pain, exhausted, am not overwhelmed by all the trouble it causes me at work, at home, does not mean that I did not limp into work this morning. My natural inclination with any problem is to look at the positive. That is simply how I am built and I refuse to apologize for it.

I understand that others need to vent their frustrations - that is equally acceptable as sharing positive affirmations and messages of hope and strength.

I happen to like positive messages from others on this board. I hope people continue to post them.


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   Posted 2/6/2009 9:13 AM (GMT -6)   

I am a Martyr.

It is impossible to compare the level of effect that each of us endures from FM. We are so different in many ways. I, like Kerri, enjoy the positive "You can do anything" posts. I am a young, strong, man and realize that my level of resistance is still much higher than those who have endured for a longer period of time than I have. I salute you for your courage, but I will still push others to maximize their potential despite their pain and fatigue.

We Martyr's need to sound off just as much as those who are struggling. It is our way to encourage ourselves and each other.

Our attitude towards life determines life's attitude towards us. {Earl Nightingale} 
Fibro since 2005

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   Posted 2/6/2009 9:22 AM (GMT -6)   
Great post, Jokat. :)


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"Tragedy is a tool for the living to gain wisdom, not a guide by which to live."
Robert F. Kennedy 


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   Posted 2/6/2009 10:24 AM (GMT -6)   
Suez you are venting and that is one of the great things about this forum, we can express our feelings about this DD when we feel like it.
For "me" I have to try to see the positive in my life. I also suffer from depression and I know myself pretty good at this stage in life and I know I have to look at the positive to keep the depression from taking me down. I know the one thing I still have control over is my thoughts.
When I read post from people who have a lot more energy than I do I'm a little envious of them but on the other hand I know I don't have the pain that many others do and I'm sure there are those that are a little envious of that. Fibro is a whacky disorder that affects each person differently and we have to accept that on here. I feel sorry for those when they are going through a bad flare and I'm happy for those that are having a good streak. We support each other no matter how they are feeling or where they are mentally.
luv and hugs
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   Posted 2/6/2009 11:05 AM (GMT -6)   

Hi Sue2z-

When the fibro first hit me I literally could not function. I could not walk 10 ft. from the pain and fatigue because I got clobbered with depression too. I could not lift a dish, wash my hair, or do anything- I was so scared and could not imagine this was how my life was going to be. It has been a long journey from last March-

I could only read a little and get on the computer a little and that is when I found the group here. Everyone of them took my hand, and I will never, ever forget that. They still are helping me- and the one thing about it here is it does not matter if you are having a good, bad, horrible, wonderful day/week/month, they understand!

I still have pain and fatigue but I do have some quality of life now. Believe me I could come here and scream alot of days as the winter is making my pain so bad right now. Like Karen said, everyone is so unique and have different tolerances to pain - and different levels of fatigue. Just think if we all had the same levels of pain and fatigue, there would be no one to help lift up the person who is not having a good time of it and visa versa.

Hang in there Suez!   

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   Posted 2/6/2009 11:46 AM (GMT -6)   
Hugs to you Sue.  I have to admit that when I first read that post I "bristled" a little bit too.  I was envious that other people SEEMED to have it better than I, and I also felt a little judged because fibro (and all of my other health issues) often does control my life.  I have to plan every day around how I feel and what I'm physically capable of that particular day.
That post actually bothered me for a couple of days; then I realized that the only person judging me was ME!  If there are people who can lead much more active lives than I, then more power to them.  I'm sure some people look at me and wish they could be as active as I am.
It's so hard when you feel so bad not to take offense when you FEEL criticized for not handling your illness as well as others.  It was only after I read this post that I realized that no criticism was intended nor implied. I'm just really sensitive to what I've had to give up due to my health problems.
I realized that those "go-getters" smilewinkgrin   in the previous post weren't criticizing those of us who are having a really difficult time right now; they were just really trying to stay positive for their own sakes.
I had a friend who died from  cancer a few years ago.  She once told me that some days all God had planned for her that day was just to get out of bed, and she was proud of herself for doing whatever she could, even if it seemed really insignificant.
Sue, if all you are able to do is get out of bed on some days and move to the sofa, then that is an accomplishment.  Getting on the computer and sharing your feelings with others in the same boat is an accomplishment.  Please don't apologize for expressing you feelings.  You actually helped me come to terms with some of my own. :-)
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 (post edited due to brain fog) shakehead
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Post Edited (AustenFan) : 2/6/2009 9:55:21 AM (GMT-7)

getting by
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   Posted 2/6/2009 12:01 PM (GMT -6)   
To those who consider themselves martyrs,
There is nothing wrong with having a positive attitude.  We should all try to do that.  It does help.  To try to appreciate the good things in life, no matter how small they are.  Positive posts are wonderful.  Everybody loves to read them.  Just realize that there are others who are suffering and may not have gotten to that point of feeling better.  But I love you all the same.  And I love the positve posts.
To the sufferers,
We are living with this darn disorder and it is hard.  We are all at different stages in our lives and sometimes it is just too darn hard.  We may need to rest and recooperate to feel better.  So there is nothing wrong with taking a day to lay around so that you feel better the next day.  There is nothing wrong with saying "I am having a hard day and I can't take it". 
I think that it takes all different levels of this disorder to keep the forum going.  As stated above, this keeps it interesting.  We all learn from eachother.  That is what makes this place so special.  I love all of you and I think this is a wonderful forum. 
To everybody,
I wish you all a wonderful day.  I hope that we can all feel better once in a while.  But I guess the bad days make the good days so much more appreciated.  Keep posting all of you.  YOu are all very special to me.
Luv and hugs, Karen
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   Posted 2/6/2009 12:34 PM (GMT -6)   

Well, I guess the consensus here is that pain is subjective, both mentally and physically.  I have been very fortunate to have had periods of time when the pain was nothing more than white noise, then times like now when I have had to crawl to a chair.  It is very difficult to be positve when the pain is this bad, so I just isolate myself and don't even try to explain it to my friends who 'don't get it'.

The hubby had two teeth break off at the gum last week, went to the dentist and he sent him home with nothing but a phone number for a root canal specialist.  He was pacing the floor in pain, and when he called for something, the dentist said..."It shouldn't hurt that much...take three Advil"  Subjective.  He had the root canal on one tooth the next day and was in tears when he came home.  Again...'Take a couple of Motrin...the nerve is gone and it will just be 'sore".  He finally took some percocet he had left over from a kidney stone. Everyone's pain threshold is different.

When I thought my dog was going to be put down on Tuesday, a friend called and of course asked why I was crying.  I told her and I knew what her answer was going to be...just what it always is.  "At least you have never lost a child like I have."  This does not help me put things in perspective like I am sure she thinks it makes me feel guilty for mourning the possible loss of an animal.

This forum is so wonderful because we can vent, complain, cry and laugh.  Just having someone say..."I have that too and you'll be alright' is very comforting.  The positive posts are inspiring and those of us who aren't quite there yet have something to look forward too.  But it's okay to be frustrated also, and because so many of us have no where else to vent, it's a relief to know we can always come here.






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   Posted 2/6/2009 12:59 PM (GMT -6)   
I am sorry if I offended anyone in any way. I try to keep a positive attitude. If I dont I am down for the count I just want to let you know that I try to stay as active as I can. I have sat through my daughters sporting events and thought that I was going to die on the hard no back bleachers. I have dragged my husband away from a party because there was no where left to sit and if I stood for another minute I would fall over because my legs hurt so bad. My dad was a military man and I was brouhgt up that complaing and crying were bad and sometimes I need to remind my self that it is ok and it is healthy... My husband gets a little irratated because I dont show a lot of emotion. I
I think we all go through times when we dont want to hear how great someone else is. Becuase we want to be able to have someone to relate with.
I am happy there are so many positive thoughts on here. I have never thought that any one was calling the other lazy or not wanting to do something. I think we all do what we can when we can and if someone doesnt like its ok..
I hope everyone keeps posting good or bad. We are all different thats why we have so many flavors of ice cream ..

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   Posted 2/6/2009 1:01 PM (GMT -6)   
Hi, Sue!  I'm not sure what post upset you but I am definitely one of the positive thinkers on this forum.  I'm not a martyr because I'm not a "victim".  Life just hands me things and I figure ways around them.
You know, I wasn't always like this.  I did have positive thinking parents so I was around this type of thinking a lot, but my parents were very healthy and lived a terrific life together.  That didn't happen for me.
When I was hit by fibromyalgia I was in excrutiating pain.  Every movable part hurt tremendously and my elbows were hit like I had banged the "funny bone" and I could barely hold a pen, let along take care of my home, three small children, and cook.  I dropped plenty of things, including one whole dinner on the floor because of the pain in my joints.  I also was suffering from Crohn's disease so badly that I was having to run to the bathroom around 25 times a day...with bloody diarrhea.  On top of it all, my husband was suffering greatly from depression and I was trying to hold my family together.  So my life wasn't as positive as my parents.
But, I did have a choice.  I could choose to carry all the anger I had inside or I could let it go and try to make the best of my life.  I, obviously, chose the latter.  I found that positive thinking, along with medication and movement helped to make my life better.  Since that is my experience with this illness and the others that I have, I try to pass it along to others. 
I think I've helped least that's what they tell me.  And, I suppose my positive attitude can be irritating.  That's why there is a "thumbs down" icon on the forum.  If you don't want to read someone's post that irritates you, you can click on that and it ignores those posts. 
I truly hope I wasn't the one that made you so upset.  I spend many hours each day trying to help others on this forum.  We are all suffering from this and many other problems in our lives and the last thing I want to do is make things worse for anyone.  I just try to encourage people and give them some hope.  I'm glad that you feel comfortable enough to post your thoughts here.  That's one of the reasons we are on this forum.  Everyone is affected differently and handles their pain differently.  It's good for everyone to voice their thoughts.  That's what a good "family" does!

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Post Edited (Sherrine) : 2/6/2009 12:27:51 PM (GMT-7)

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   Posted 2/6/2009 3:07 PM (GMT -6)   
In my previous post on this thread when I said "people were just trying to stay positive for their own sakes," I realized that sounded like they were trying to stay positive only for their own benefit at the exclusion of others. (open mouth, insert foot :-) )
NOT what I meant at all.  I just meant that many people have to stay really positive to help themsleves cope with this dd.
Sheesh!  I didn't realize until just now how difficult it can be to convey your feelings/meanings in these posts.  When you can't see others' faces or hear their voices, meanings can really be misinterpreted.
What I am impressed with, though, is how mature, caring, thoughful, considerate, and real everyone is around here.  This board is such a safe place.
"There is no charm equal to tenderness of  heart." - Jane Austen
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.

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