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Old 03-05-2007, 05:33 PM   #1
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Exclamation What words or statements have hurt you the most?

I am new to the boards and am finding many helpful ideas for living with fibromyalgia, both physical and mental.
I am amazed by statements from people who do not understand what we are
going through! I am talking about family, friends, and doctors.
I think it would be interesting to hear what words have hurt others the most.

I will start by stating what my s.s doc said to me. He stated, "If there was a bag of money in the parking lot, I bet you would get to it before me!"

And then there is my ex boyfriend who stated: "I know you could go out with me tonight if you really wanted to."
And my so called friends who always say things like, "You dont even look like you have any pain! You probably just dont want to go."
Gosh I could SCREAM! I told them to walk in my shoes for just one day and they would know how I really feel, but they just dont get it.
Thank God my children know how I feel. They can "see" the pain I am in when they are with me.
So whatever statements have hurt you regarding your condition, go ahead and share it.
At least you know all of us here with fibro will know what you are going through.

 
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Old 03-05-2007, 05:57 PM   #2
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Wink Re: What words or statements have hurt you the most?

oh girl i know. this new chiro i went to said that thats just what they tell pts when they don't know what is the matter with them. oooooooh i was so mad.
a chiro of all people.
i have been dealing with this for 7yrs now and i have kind of learned to let it go into one ear and out the other. they can just kiss my @$#,lol.
i think we just have to stick together and that will really help, thats why i love this board.
hang in there and hopefully someday we will get the attention that we deserve.
luv,
rob

Last edited by girl75; 03-05-2007 at 05:58 PM.

 
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Old 03-06-2007, 09:40 AM   #3
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Re: What words or statements have hurt you the most?

Hello Ladies! Oh and Gents (I'm sure we have some gents here!)

My very first Rheumy was "sort" of into Fibro when I was initially diagnosed back in 2002/2003, except for prescribing narcotics for pain. She felt us Fibromites could "exercise" our way through the pain. Okay, usually true, for some, depending on what your situation is. Fibro has been discovered to come in stages. Some have "simple" Fibro (for lack of better words that usually escape me!) and it goes in a scale to "Full Blown Fibro", which is where your pain level is high everyday and stays that way. Used to be docs didn't believe that Fibro progressed, oh contrare (sp?) it certainly does! But anyway, this lovely woman Rheumy, **cough cough** told me, when I had asked about Guafesien treatment, now this is true, I swear...."you can just go buy Robitussin and take that" AAAAAAAAAAHHHHHHHHHH! I just pictured myself going into CVS and buy all the Robi they had on the shelves! There is ALCOHOL in Robi! Needless to say, she is no longer my Rheumy and I do NOT see Rheumies any longer unless I have a problem with arthritis, certainly not for Fibro. I see my Pain Mgt Doc. There is no cure for FM as of yet, removing filings include IMO, so the best treatments out there are, IMO, what ever works for you. Be that meds, homeopathic, spiritual, exercise, whatever. You have to deal with your FM in your own way. Rember, YOU have FM, it DOES NOT have YOU. I DO belive that the more you move around the better the Fibro is in control. I can testify to this only from my own experience. I tried to work again after the death of my only child, and I did notice that my Fibro pain throughout the day was not as intense, of course I was exhausted when I got home! I eventually got fired for coming in late and not being able to perform my job. Duh, go figure! LOL I have to toss in for those who aren't familiar with me, I also have severe back injuries, herniated lower lumbar discs, spinal stenosis, spondylosis, pinched caudial nerve which cause severe upper leg pain. I can't raise my right leg but a few inches off the ground and I have to remember to walk straight up without hunching over. I'm not a candidate for surgery because the nerve is so damgaed, but Pain Mgt pretty much controls the back pain and I've learned to keep my body in a certain position so as not to cause severe screaming if I move the wrong way. LOL But the pain of Fibro bothers me more than my lower back pain. But anyway, back to "moving around", it does help, honest if you are able. Swimming, walking, whatever you can, just don't tackle it like a pro football player! I can no longer garden because of my lower back, but I try, I sit on a little stool and move it around to where I need it! LOL quite a sight. OMG, I got off track there. Back to this Robi suggestion...This last appt with my Pain Doc's PA she prescribed me 4800mg of Guafesein a day (tablets are huge and smell awful) and I told her what my old Rheumy said about the Robi, and I though this woman was going to fall over! So now I'm taking the Gua, don't know if it helps, but heck, what's one more pill!

Or the other good one is from friends or people who don't know and understand FM..."What does it feel like?" "You don't look sick" Ah yes, questions you can't possibly expect others to understand. Oh and this Rheumy also told me that she had a FM patient who exercised daily on a stationary bike for months and no longer needed to be on Effexor. Well, goody goody. LOL I have real issue with all these SSRI's they through at us, if you read some of my older posts. So the woman no longer needed Effexor, big deal. Effexor is not a FM med, it's used as "off label" treatment. Is that right "off label"? Something like that. Us Fibromites are given "used" meds. We have nothing that is specific for our condition, yet. I believe there are two or three in the works. Cymbalta is NOT a FM drug, it's for Depression and yes, Depression does cause pain, but then that goes back to docs believing that FM is symptomatic of Depression. It's a vicious cycle of different "theories". I have other posts out there on this board that explain the internal works and effects that FM has on our CNS, from studies. I'm convinced that it's internal and deals a lot with CNS and Brain function. And as for the removal of analgram fillings, what about the women I know who got FM who have dentures? Have had dentures for awhile? I do belive that your mouth carries a lot of nasty stuff, makes you want to go out an kiss your loved one doesn't it! LOL
Well, again, I've rambled and gone beyond the main topic. Thank you for your patience! LOL I love you guys.

Rock on Fibromites!
tk
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Old 03-06-2007, 08:29 PM   #4
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Re: What words or statements have hurt you the most?

TK it is so good to read one of your posts where you think you have gotten off track. You are always full of information, thanks!

The statement that got my dander up most was a women at my exercise place saying in front of several people (we were in a group talking) "Oh yes I know what fibromyalgia is, I used to work in a psychiatric ward." Needless to say everyone got quiet and all eyes were on me. I did try to explain to her what kind of disease it was, but sometimes for some people it isn't worth the effort. As this women also claimed to be a decorator....I know how do you go from the pschy ward to decorating, is there a connection there....I don't think so!

By the way Welcome Hurtin, this is a good idea for a thread.

Glojer

 
Old 03-07-2007, 04:15 AM   #5
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Re: What words or statements have hurt you the most?

Thank you for giving me reasons to laugh!
Glojer, I couldn't believe that someone actually thought Fibromyalgia was a psychiatric disorder!! Wow! That is a first!!
I was also laughing just picturing TK going into CVS and Walgreens and grabbing up all the bottles of Guafesien cough syrup! lol
And this advice from a doctor no less!
Girl75 has a good attitude regarding those types of people. I should work on
developing that attitude, instead of feeling the hurt from remarks of ignorant people, which actually makes me hurt physically too.
I also remember one of my well meaning elderly neighbors stating to me, "You probably need more fiber in your diet". I looked at her strangely and said, "Why?" Does it really help? She stated, "Well the problem sounds like
its with Fiber". As I questioned her more, it became clear. She kept using the word FIBER myalgia!! lol
That remark didnt hurt me though, cause she meant well.
I never bothered to explain it to her since it wasnt worth it to me.
I am presently trying 5-HTP, St. Johns Wort, and Magnesium 3x a day.
I am also in a study regarding an herbal oral spray.
At this point, I will try almost anything to get some of my life back!
Thanks for the responses and the welcome to this fine community of friends who understand the pain. : )
Hurtin4Certain

 
Old 03-07-2007, 12:11 PM   #6
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Re: What words or statements have hurt you the most?

WOW!!! GREAT TOPIC!!!
The woman who told Glojer that she knew what it was because she worked in a phyc ward!!!????!!!!! WHAT THE #@*%!!!!! I would have HAD to send her to the hospital!!!! I may feel sick and weak, say something like that to me and there is no telling what beast you are unleashing! I have had might that has scared me at times and a comment like that would have sent me into a fit of rage and she would have ended up in a bloody pulp on the floor by the time I was done!!!!!! She'd know PAIN and Id be in prison and a prison hospital at that with all the meds I would need! I wouldn't care!!!! Id wipe the freakin floor with her!!!!!...... Anyway..
As for me, hurtful things people have said:
Someone who considers themselves one of my best friends, in front of a table of her friends I hardly knew, during a conversation of what meds we all take, turned to me and said...
"Aren't you fixed yet?"
That hurt me, did not make me angry. Not that I consider her as much a friend to me as she does I to her, but I put her in her place. Unfortunately, I am not good at confrontation. I do better in writing. She received a letter. She cried for days and felt so bad. She came to me and apologized in tears. She is now one of my biggest advocates. I still don't feel as friendly towards her, but she goes over the top to be extra careful with me. She is a good friend to me and would do anything for me. She is loud and obnoxious. Very pushy and presumptuous. My other friends cant stand her, they tolerate her because of me and cant see why I even relate to her at all. I do because I know if no one else can have my back.... I know she will. She will always be there for me. I do find that endearing, even if its a bit creepy. My other friends all shake when I hand them any papers and ask, "Is this a letter?" LOL
Lets see, after a two yr. major flare, I was finally approved this past November for my disability pension by a state appointed rheumy who himself had Parkinson's. My husband said not long after that...
"I think you're well enough to go back to work."
I wont even go there.
A-holes I used to work with would always tell me...
"There's nothing wrong with you, its all in your head."
I don't and wont GO there anymore, being that I am retired. See, I told them all I was sick. Now, I don't have to go there feeling miserable and being treated miserable. I get to stay home and get the same! LOL! JK, my family understands mostly. Doesn't mean they HELP with anything though. But at least its people I love and Im not killing myself just for things that aren't really necessities. We truly have managed to do ok. It gets tight, being my husband owns his own business.
I right now am in a flare and am so completely frustrated because I am a creative person as well. I have so many things I want to accomplish with my ideas and my mind wants so much for my body to do like it used to. I had so many dreams. Books to publish, sculptures to make, businesses to start, life to indulge, and the steps between are so painful and unproductive. I know my own advice. Realistic goals, at our own pace. This is easier to accept when my body is a bit more willing to cooperate.
Well, Ive typed enough; need a nap.
Feel well Folks, Felicia

 
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Old 03-07-2007, 07:28 PM   #7
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Re: What words or statements have hurt you the most?

These boards have been a god sent to me. It helps me to read all of the posts and know that others are going throught the same issues.
It seems like most everyone here has had the problem of getting a doctor to listen and really try to help them. It is a process and finding the right doc can be difficult.
My biggest problem has been my family. My husband is just finally begining to understand after sitting in a doc appt with me listening to all my symptoms I have experienced for the past 3 years. My mother just loves taking pitty on me for having a disease, which she has no clue about but it makes for a great story for all of her friends.
People are stupid in general. I feel for others with disabilities greater than mine. Because if people are so insensitive to us with fibro how do they treat the rest. I guess what makes it worse it that our disease is not visible, we work through the pain, and we all look normal even though we are dying on the inside and we just want to collapse.
I just keep telling my self that it's not just in my head, anti-depressent are not always the answer, and just keep asking questions until you find someone who will listen.

 
Old 03-08-2007, 05:36 AM   #8
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Re: What words or statements have hurt you the most?

Hey Gunner, I too am most grateful for these threads. I had to laugh about most people really being stupid... Not that I am a genius or close to, my IQ is only 123 which is slightly above the average scale and I always felt like a moron! (take the test free on the web, High IQ Society) I know folks who are more intelligent than me, I know people who are dumber than stumps. What really kills me is that the average IQ in America is a meager 100.... That's 10 points above duh! This is also the average of a fifth grader. This is what the media, the government and the entertainment industry placate to. Society in general here in the good ol' USA is a cesspool.
Anyway, I am so glad your hubby came to the doc with you. Its so hard to get them to understand. Especially when its mostly invisible. The flare Im going through right now, it seems on most days, Im wearing my ills. I feel like crap and look like crap, so my family has been more tender.
I too am grateful that this is just fibro. Just go and check out the boards here. Read the threads from some of the other, more ill fated diseases. I may feel sick every day, but what I have wont kill me. I am the walking sick.
These threads help to assure us that we're not nuts, and that there are others going through almost exactly the same things. Its nice to feel validated.
I don't know if Im just sick of people who don't believe me, or just becoming a real bugger on the subject, but lately I find myself being quite cranky with those who want to fluff it off as nothing just because they don't understand. I basically shove my life's health history down their throats. I rattle on, rather forcibly with all my ills, and beliefs on the matter. Maybe why they do think Im nuts! LOL!!! Ive become so fed up. I fortunately have a wonderful GP and rheumy. Before then, I stopped asking questions and started standing on tables and forcing them to deal with me. I had a horrible experience with my dx rheumys partner. I sat in the office with her and told her she was wrong. Everything she said, I said, "No, you are wrong." I was dx by her partner in the group and she was trying to tell me I didn't have Fibro, that it was all in my head!!!! An hour I sat with her and said, "I know what I have, I have been sick for most of my life. Having Lymes at 25 and an adult case of Fifths Disease, (a measles virus) at 32 from which I have never felt fully recovered from along with all my other pre-syndrome symptoms and ills to date, tell me I have it. My regular GP believes I have it, that's why he sent me to your partner. Your partner dxed me and your ganna tell me I don't? No, You are wrong. Now I want my records, Im going to a rheumy who WILL treat me, for the illness I DO have. You must have woke up on the cranky unsupportive side of the bed this morning. Doctors as nasty as you, with no bedside manner should not become doctors. Just because your smart, doesn't mean your wise. Get over yourself and show a little compassion. Maybe then you wont lose any more patience to your bad attitude!"
I got my records from their main office and tossed her report out, right off the top. I gave my dx from her partner to my rheumy Im seeing now and everything is fine. This rheumy also dxed me with CFS. Where lies the difference, I don't know, but feel the fibro is my most disabling nemesis.
Anyway...
Feel well folks, Felicia

 
Old 03-08-2007, 07:22 AM   #9
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Re: What words or statements have hurt you the most?

Wow, I loved reading your posts FANNtasy3.
You tell it like it is and dont take cr*p from anybody! lol
I especially loved your response about the psychiatric remark!
I laughed so hard just picturing you wiping the floor with her!
I wish I could be more like that, but instead, I run away and
cry, cringe and hide, like a wounded animal.
Yes, I am a wimp sometimes. I do remember standing up and yelling at
one of my doctors when he said, "your depression is whats causing you to
feel pain. This antidepressant should help". OK, I freaked out and screamed at him, "DONT YOU GET IT!!!, I am depressed BECAUSE I am in pain. I had the pain BEFORE the depression." Chronic pain will cause anyone to be depressed. Geeeeeeeeeeeze. Fix my pain and the depression will go away!

I think we all have heard those statements, "its all in your head" from others.
But a doctor!!! Wow. I am glad you tore up that report! Good going!
I need to become more assertive to these ignorant people.
I lost my husband due to fibro. He thought I didnt want to work and was
faking my illness. He never was a compassionate type person anyway. I think
a lot of it was because the flare ups prevented me from having sex on a reg. basis. Men!! No great loss, except financially. I had to sell my house that had a mortgage, downgrade, try to live on a low budget, and move to a warmer climate. It was difficult doing all this with chronic pain to boot!

Gunner00, your husband sounds like an understanding soul, but your mother
sure seems to enjoy pitying you for some reason. I am sure she means well in
her own way.
I dont want anyone to pity me. I try to hide my pain from some of my brothers & sisters. When they travel here to visit me, I double dose on ultram
just to get through the 4-5 hours they visit. Otherwise, they would just see me in bed, hair not combed, no makeup, heating pads all over me, crying, etc. I wouldnt be able to make them a nice lunch or "entertain" them.
I am sure many of us have been there, done that.

One more hurtful remark from my past: "All you have is a "yuppy" symptom since all your labs and tests came back normal, it must be a psycological thing".
"Your pain is imagined, sort of like a subconscious thing." "Get over it!"
She was always bluntly opinionated and told me she only wants to help!
She also told me I was subconsciously craving attention and going through menopause was causing all my problems. lol. Some friend!
Needless to say, we rarely keep in touch now.

I am going to check out my IQ now. If it is higher than 100, it will make my day, otherwise I will keep it a secret and live with it.

This board has been very supportive and I feel so much better reading what others have been through, so I know I am not alone enduring this strange illness.
Hugs,
Hurtin4Certain

 
Old 03-08-2007, 08:04 AM   #10
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Re: What words or statements have hurt you the most?

My GP dx'd me..and after about a year..wanted confirmation from a rheumy..I said ok. I spent $400 to find out that he could do nothing..that his patients with FMS that got better did it on their own..and that he would give me vicoden just like my doc was. THEN when I did the follow up with my GP I asked about the report from the rheumy..well, The REPORT said that I did have FMS and that I should go see a psychiatrist to FIX me! I just looked at my GP and laughed..and asked him if he agreed with that!!! He hesitated just for a minute..then said..NO..he didn't think i need that sort of help.

So...the 'expert' said it was in my head...I think that is HURTFUL.

It is also hurtful when those I care about..keep wondering when I will get better. And why I can't do things..and is it ok to take all the meds...and on and on. I am hurt by those that I care about not taking the time to learn about my illness..but make judgements about what I should do..or how I should feel.

 
Old 03-08-2007, 06:00 PM   #11
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Re: What words or statements have hurt you the most?

Glad I can be of some entertainment! Seriously, it would hit me as ignorant to tell me its all in my head, but to say she knows what it is, she worked in a pshc ward.. AAAUUUUGGGG!!! I think I would have lost it. That was so condesending and catty. I louth women like that.
Believe me, I am a wimp too. I do not deal well with verbal confrontation. I cower in most situations. I think of the things after the fact. I dont know if its always been the fibro fog, but like I said, my friends fear the thought of getting a letter from me. They know my pen is like a snake bite. I have lost friendships over them too, but obviously not ones I cherish, or they would still be my friends.
DecLady, basically that messed up rheumy I went to told me I needed a psych doc. I said, "Ive been seeing one since I was 16. Ive been on meds for panic disorder and depression for years and just weeks before my apptment with you, my psych doc said Im no longer depressed and so has my psycologist. Would you like to call them and tell them they are wrong? When obviously, you dont know me, you have never treated me and know nothing about me and youre going to contradict the docs who have been treating me for years. You are the one who is wrong, wrong, wrong."
Yeah, the family members that think they are only trying to help fix you, by inferring that you dont need to take meds and all you need is to train for a triathalon.... give me a break. I try to explain to my husband, just because I am able to cooka big meal one night, does not mean I will be able to cook the neat all the next... I always believed a ball in motion stays in motion...not with this! I wish it were that simple.
And Hurtin, I guess I learned the attitude that I pay the doctors to work for me. I am the one who has the pain and if they dont understand or treat their fibro patience with respect and some kind of reasonable proticol, they are not the doctor for me.
Hurtin, Im so sorry for your marital split. I have heard so many relationship split because the partner cant deal with it. They either get so frustrated that they cant fix you themselves, dont believe it, dont care to understand it or are too selfish and feel it shouldnt be their responsibility to care for a sick partner... that they think is trying to pull one over on them. It is to laugh.
Well, Feel well Folks, Felicia

 
Old 03-12-2007, 08:22 AM   #12
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Re: What words or statements have hurt you the most?

Being dx'd in 1992, made it difficult for people to understand it. Anyone with background in medical terminology ever broken down the word Fibromyalgia? It means: many fibrous aches. Just some trivia for everyone My GP was really good. He tested me for everything under the sun, almost. This of course was back when they said it was a connective tissue disorder. When he retired, I must have seen half a dozen Dr's that said it was a 'catch all' dx and basically it was all in my head. Xrays for the back and knee, CAT scans, blood tests, I think they just wanted the money, since they didn't believe there was anything to be testing me for. One Dr. told me straight up....go see a psychologist....they can get you past all this thinking that there is something wrong with you. Now that ticked me off. So much so that I left his office in tears of anger. I don't cry in front of people. I hate to cry. I hate to feel weak. That Dr. made me feel about an inch tall, and more than slightly mental. I do know that my mental state plays a BIG part in how I feel. The more stressed, the worse I hurt.

The best "Bad" day I had was when my oldest son was about 3, I felt terrible, and was trying to psyche myself up by getting dressed and putting on some make-up, to no avail. He came up and took my hand and said to me...."Momma, you look beautiful today"....truthfully, I looked like hammerd s***, but his act of innocence and love, well, it was the best!!

Here's hoping someone tells you that you look beautiful, on your bad days, and truly believes it! Have a great day everyone.

 
Old 03-12-2007, 08:37 AM   #13
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Re: What words or statements have hurt you the most?

hi kids,
good topic. when i first went on ssi a woman who was my friend at the time said she thought i was taking an easy out. she said she thought i looked foolish asking my body if it wanted food. tho her words were full of ignorance i chose to not take it personally, accepting that she had no understanding, therefore no compassion.
several years later she was diagnosed with fibro. sadly she now understands. she did apologize for her harsh word a few years earlier. i told her i had never taken it to heart and did not allow her words to hurt me. we are no longer friends, other reasons.
there will always be people who say words without thought. it is for us to rise above this and show the deepest level of compassion. i accept the right of others to see me and not "understand" or "get it". my health is for me to live. just me.
i surmise that what i am getting at is don't take it personally. words can only hurt you if you allow them to. you control what you allow to hurt you, no one else. i let those words slip off me like water off a ducks fanny feathers. compassion and love, tolerance and kindness, are my weapons of choice when facing harsh words. remember the old saying, kill em with kindness? well i am here to say it works.
when i think about the kindest words i would want to hear when i am in pain they are, i love you.
i love you all,
bluelakelady

 
Old 03-12-2007, 08:46 AM   #14
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Re: What words or statements have hurt you the most?

I don't talk much about this to people anymore but the thing that hurts me the most came from afriend I have had for 23 years.(let me say that she is an occupational therapist so should know better right?) Anyway she knows I have this and one day when we were on the phone she started to tell me about a lady in one of her classes(when she was in school for O.T) She said that this woman told the instructor that she did not complete an assignment because she was having a very hard time with her fibro and wanted a little more time.Well my friend was angry and said who does she think she is? The rest of us worked hard and stayed up all night if we had too, why should she get a break? just because she says she has something that no one can even prove? then I should get more time too because after all I get achy sometimes. What's even worse is that if I even mention it now she suddenly has to get off the phone. I don't even bring it up anymore(unless I want to get off the phone real quick) and if it is in person she has this way of making herself yawn and begin to tell me how tired she is. I should also point out that a few years ago(many years after I was diagnosed) she went through a time where she was having skin rashes and swelling. She was very scared and called me(I had a newborn at the time) I went out of my way doing research for her and spent hours of time on the phone with her. She finally found out it was allergies. I told her maybe it's the beginning of fibro, well all of a sudden she wanted alot more info! I told her to look it up as it was way too complicated and I had already explained all of this to her when I found out I had it. Well guess what? she didn't remember anything so I told her to think of me when she was reading about it. Nothings changed, she's fine so she has completley forgotten about it again.
Kara

 
Old 03-12-2007, 08:54 AM   #15
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Re: What words or statements have hurt you the most?

hi kara,
there are many wonderful women in the world. may i suggest you set her free and find another friend?
peace,
bluelakelady

 
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