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    Old 06-14-2005, 05:49 AM   #1
    Grognard Les
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    General first timer greeting to community here

    Hello all, as usual, one of my friends have found this place doing a google search.

    First off, for those curious "grognard" is a term used by dedicated fans of military history based simulations, ie wargames. Want to know what a wargame isn't, go anywhere other than a place like [ - removed - ]

    Yes, I have fybromyalgia (and I plan to type it as fybro in the future).
    Been on disability since about 94 thanks to it. Officially on paper, the documentation reads disabled due to depression. Back then most people thought fybro was a crock. I am sure you have already experienced that opinion.

    I "live with it" so to speak. I conquered the depression (ok mostly conquered the depression) when I finally learned there was no magic cure, and realised the road to improvement was to stop pretending it was temporary.

    I expect to die having fybro. I might not be depressed.

    I am of course open to knowledge concerning fybro, but I am wary of easy solutions, quick fixes, and cures that really don't cure. Like I said, I "solved" my fybro by deciding my original life was over, and it was time to build a new one. I only gained a measure of peace, when I made peace with the situation.

    Today, public enemy number 1 for me, is persons of closed mind speaking of things they haven't had to deal with, telling me what they think of my imaginary condition. I am usually quite hostile to persons of that sort.

    I realise that many wish to help, and often will generously seek to aid me in "curing" my condition. The tricky part if getting them to realise, some things don't get cured.

    Ok hope I have not bored you with that.
    I hope I can contribute here. I hope my shared experiences bring some measure of usefulness to at least one person.

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    Old 06-14-2005, 06:24 AM   #2
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    Re: General first timer greeting to community here

    welcome les,
    peace. that which is attainable only with open eyes. you will find many good people here. some seeking an answer. all of us reaching out to each other no matter what. we support each other thru the bumpy spots in life. we listen to each other. we often have input to offer and do so. there are some very informed people here who take the time to research on behalf of all of us.
    most of us have more than fibromyalgia in our cornucopia of health goodies.
    getting irritated with people who do not understand is a waste of your precious energy. personally, i prefer to walk away, accepting their right to their opinion, and save my energy for something i want to do. confrontation with ignorance is pointless.
    again let me welcome you to our little, well maybe not so little anymore, family.
    depression. i am sorry you deal with it. i know many here who battle within. i am so fortunate. depression is not an aspect of my being.
    peace,
    bluelakelady

     
    Old 06-14-2005, 08:24 AM   #3
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    Re: General first timer greeting to community here

    I too am a first timer. I have been reading the boards for several weeks but never posted until I found someone else who is a first timer also. I was officially diagnosed with fibro two years ago, but in my study on the subject, I have figured I have had the stuff for about 40 years and no doctor knew enough to tell me so, telling me it was all in my head. When I got smart and went to a rheumatologist, I found one who specializes in the dreaded disease and has been working with my local care providers to make life easier for me. I still have no energy and I am so sick and tired of pain I don't know what to do. I live with it as I also have arthritis and I can't figure sometimes whether I am having a heart attack, fibro pain or just a twitch in my body. I sure hope someone can tell me I am going to be ok, because sometimes I feel as if the end is very near. I am now 63, have suffered a stroke in 2000, had surgery to remove a clot from a carotid artery and consequently got my disability on that. After the stroke, I began to really feel the fibro. I am writing a book here. Gonna quit for now.
    Swallowtail

     
    Old 06-14-2005, 09:54 AM   #4
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    Re: General first timer greeting to community here

    Welcome Grognard Les and Swallowtail, always nice to have more input and opinions hope you enjoy your stay with us.


    glojer

     
    Old 06-14-2005, 11:56 AM   #5
    Grognard Les
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    Re: General first timer greeting to community here

    The welcome is greatly appreciated everyone.

    I got word today, I was accepted for rental of a nice new place.

    It's just a rental, only a modest 3 bedroom. Key is it is an inclusive sum. I won't miss the burden of juggling numbers each month for utilities.

    Now I get to convert from the stress of looking, to the stress of moving

    Looking for closure on a thorny issue. I have been where I is for 10 years, and it has been 9 years too many. The place is a code nightmare and a dump, the landlady is tired of being a landlady, and she has no interest in renovation or repair. A 4 unit rowhouse of townhouses, and the building is so old it might be a heritage monument. The two end units are empty, have been for a few years, she is just not interested in maintaining the building, even if that means an inability to rent the two end units.

    I will gladly greet going to a new place, one with a responsible landlord, where the wiring is up to code, and the structure younger than me.
    I will finally find some peace of mind where I can sit and fiddle with my few hobbies and not wonder, will the place burn down, or will the land lady finally just sell it out from under me without warning.

    Sorry to blather like that

    Warning Les never types short posts hehe.

    Last edited by Grognard Les; 06-14-2005 at 05:50 PM.

     
    Old 06-14-2005, 12:44 PM   #6
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    Re: General first timer greeting to community here

    Hey Grognard Les and Swallowtail,

    Welcome, welcome, you have landed at a good place.
    I am always sorry to hear that anyone has Fibro so I will get that out of the way since that is why you are here.
    There is a wonderful community of love and support here. Always nice to have new voices and ideas.


    Peace and love, Janet

     
    Old 07-01-2005, 06:43 PM   #7
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    Re: General first timer greeting to community here

    Good night, I didn't know I hadn't been on here for so long. Sorry for that. Fibro fog, along with high humidity, swealtering heat, and not feeling like a human for some time, I just can't keep going. I read up in one of the posts that it makes one mad to have someone look at you as if you are not from this planet when you talk of the fibro. I have that happen to me all the time. I can tell soneone that the fibro pain is bothering me and they look at as if to say "Oh, yeah, sure, right". You can see the question mark over their head. They talk a good talk, but until they have walked in my shoes, they will never understand. Also someone said their former life was over and we have to start over with the fibro and make a new life. I wasn't thinking like that for so long and now I seem to feel like I may just ignore the nay-sayers and build my life on how I feel and no one else. I feel I need to get my husband involved more and when I talk to my care providers on July 5, I am going to say something to them about a meeting for a consultation. I also have been told by my rheumatologist that I need an EKG to make sure some of this pain in my chest and back is not related to my heart. I am a cardiovascular victim anyway, beings I had a stroke. If it ain't one thing it's another. I need to separate arthritis pain from fibro pain from whatever pain. Did anyone ever hear of so many different kinds of pain? I am not looking forward to winter either. As long as the humidity is low but the temps are up, there is not too much pain. Humidity keeps me from breathing well and it makes my face feel like a fire has been dumped into it. Thank God for fans and wind blowers.
    I have written a book again. Can't seem to do any less. Will go get a big bowl of homemade ice cream and come back and sit in front of my fan and play games. That'll work.
    Swallowtain

     
    Old 07-01-2005, 07:49 PM   #8
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    Re: General first timer greeting to community here

    i can't believe i missed this post. i missed your intoduction mr Grognard Les. you seem like an interesting person. i call my fibro "fibromazaza" a friend and i came up with that one day while having cocktails. it seemed a little easier to say after a couple. LOL!!!
    welcome to the board and i look foward to your post.

    hello swallowtail, welcome to the boards. i have learned alot from the others on here who also are great friends. it feels good to go somewhere and to be understood, because i know for me in the real world no one does.

    your new friend,
    robin

     
    Old 07-02-2005, 09:32 AM   #9
    Grognard Les
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    Re: General first timer greeting to community here

    Since I got here, everyone has had interesting things to say.

    I have been happy to post what I have posted. Some seem to get some benefot, and that makes it all the more worthwhile.

    But, we are all unique individuals, even while having this damnable FM to unify us.

    Never let it bother you to be the one person that refuses to go along with the crowd. NOT going along with the crowd is what I prefer to do the most.
    What works for me will not be garanteed to work for everyone else or even maybe anyone else.

    I shun medicines, hate the things. But some do benefit from them. Me, I was burned by them, and rather a bad case too. And I was burned by them thanks to too much templated thinking. So I came out of the experience rather hostile to the psychiatric profession. But some will know some people that are likely of use, and just happen to be in the field of psychiatry.

    The best anyone can do here on the forum, is understand there is a lot of solid advice, but not all of it will apply to everyone equally if at all.

    If I had to chart MY course, it would look like this.

    First contact, I ache too much and all the time.
    Loss of work from stress. Related? Unsure.
    Preliminary diagnosis of FM made after several specialists examinations.
    Attempt to go self employed to meet my own schedule of needs fails right after discovering how easy it might have been to open a business.
    Thoughts of chucking it all from frustration leads to a lot of councelling.
    Councelling seems focused on the notion, its my problem, I should solve it myself, and not expect others to do so for me (real bloody friendly sounding eh).
    Begin to seek a disability pension after it becomes clear I have a severe physical problem that is not likely going to let up .
    I get turned down 3 times initially for pension only to be accepted out of thin air for no apparent reason on the phone (after assuming I was out of luck).
    After about 3 years I finally stop fighting the notion I might have FM.
    I am depressed in a big way, and I sleep even more than I might thanks to all the "wonderful" (insert sarcasm here) anti depressants that in addition to supposedly helping (no evidence ever noticed though) make me sleepy (gee just what I need eh).
    The spiral just goes on and on for a number of years.
    Then one day I realise I might as well be a woman considering the way I live my life, not to mention the chemical altering of my mind actually makes me think I AM one.
    One too many disturbing incidents of my psuedo feminine behaviour finally hits and in an angry fit of rage I throw out anything pill shaped in the house. Everything, even pills not even related ie nasal cold medicine you name it.
    2 years later I notice I am finally acting like a man again.
    I resolve to make peace with FM my way and tell the field of pychiatry not to offer me any more stupid advice basically.
    I finally have a break through about 8 years in when I realise "hey I have FM, and I don't care what others think about me".
    I have been improving since. The improvement is mainly in the area of acceptance though. I have no expectations of ever reviving a dead life.
    All my recent history has been about perfecting the new one.

    I have watched my old me die. I didn't walk away from my old life, I watched it die a horrible lingering death. It's gone now, it's dead. I didn't willingly give up, I petulantly clung to it and wouldn't let go. It cost me 10 years of my life too. 10 years I might as well forget ever existed.
    The previous years of my life prior to FM, are just snap shots of some dead guy's life. They look like pictures from my past, but it isn't me. Not really.

    I have had to tell my wife painful things, like sorry dear, "everything that was me prior to FM is gone. All of it".
    I have flat out told her things like, "the guy you married is no longer here". I personally think in some ways she has a better man. Some of the old me was a son of a ***** actually

    But the core message is, I am me the me of today. I am not the original me.
    FM killed the old me. I fought, and I fought and I fought. And I lost.
    Protestations mattered not. Explaining I had to do this or had to do that, was ignored.
    I am glad of the pension to be sure, it allows me a life.
    If I had to work each day and just get over it, well each day would begin in pain, would be in pain all day and would end in pain. In short, my life would be 100% pain and nothing else. And it would be full bore pain, not just "some pain".
    FM gives my life enough pain routinely, but it does have good spots. The pain is only really really intrusive when I ignore the repercutions.

    When I see that some here have pain generators other than FM, and yet still fully plan on pursuing their original life and pain be damned, I can only think, well they may well get to be damned with a good deal of pain for their efforts.

    It's not easy living on a pension though. Let's not think I chose a fun choice here.
    I like to ride my bike around town. Nothing makes me depressed faster, than riding past one too many brand new homes, that I sure as hell will never own.
    And my big dream was the nice home, the wife and kids and the cliche family existence.
    It really hurts to know it isn't going to happen.
    I am limited to a mediocre rental existence.
    I don't own a car, and I will not be owning one soon.
    Most are in love with the idea a car is an inescapable reality that absolutely can't be lived without.
    "Oh I need a car to get to work".
    Must be nice, to work that is.
    I miss being able to say privileged phrases like "I hate my #@&% job.
    I can't work, thus a car for getting to work became a moot situation.
    "Oh but I have to have a car because I have small children".
    Nope, I spent all my time as a new parent pushing a baby carriage around. Takes longer to get to the mall to shop, but a car was not actually required.

    What I am saying there is, you will no doubt do as I did, fight it, not be willing to accept it.
    If you do indeed have FM, your battle might already be over, and you merely need to catch up to the reality.
    Took me a few years to clue in.

    But refer to the start of the post here. It was the way it was in my life, yours might be different. To steadfastly assert it will be "just because" might not be a winning strategy.

    Last edited by Grognard Les; 07-02-2005 at 09:39 AM.

     
    Old 07-02-2005, 08:09 PM   #10
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    Re: General first timer greeting to community here

    hello Gragnard, love your post, awesome.
    thats how my husband nows how bad i feel because i did not use to be this way before fibro. it has taken some getting use to the idea that my life will never be the same but i am coming along okay. the only hard thing is the fact that i have 2 small children whom i need more than they need me.
    fortunatly i have the house, the car and the family. it may not be the best house or car but its something. i don't really even drive anymore anyway because i am either to dizzy or in to much pain so it wouldn't matter if i had one or not. i have to have someone drive me around usually. i went to a childrens b-day party today and i could not even do anything but just sit there and watch everyone. thats why i really don't do outings anymore, i can't even have fun when i try.

    it is really nice to have you to talk to.
    thank you ,
    robin

     
    Old 07-03-2005, 06:19 AM   #11
    Grognard Les
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    Re: General first timer greeting to community here

    One understanding fellow FM sufferer is worth an endless sum of knowledgeable voices that "just want to help" unfortunately.

    I, for instance, can only offer to make life a little easier for a blind person, but only a blind person really can talk to another blind person, and discuss what it's like to be blind.

    I have often found, even the most well meaning advice and or help from non FM sufferers can be more pain than help.
    We all essentially have to pass through an ordeal just to accept we even have this foul life wrecking condition (that is so damnably invisible to the non sufferer).

    Often, most well meaning people just don't realise, that offering us "enthusiasm" and "hopeful cures" is as painful as trying to coax and encourage a blind person to accept that maybe with enough will power they can see again.

    To be sure, the mathematical chances of a FM sufferer one day not having FM is not 100% impossible, just as a blind person knows medical science might one day actually be capable of restoring sight.

    But I don't think non FM sufferers realise how incredibly single digit sum are our chances of not having FM at the end of our lives really is.

    I made a deal with life, I made a deal and I plan to keep it.
    I accepted I had FM, and that it is just the way it is, that **** happens, that it was not any fault of my own, no divine influence, no spiritual lacking in my life.
    Some people get FM, nothing more.
    I made peace with it. I accepted it.
    When it gets me down having it, I am plenty able to think of a starving man in Africa. I can ponder people living in brutal hardship around the world. The blind have it worse than me. People that have lost limbs in an accident have harder lives.
    Believe it or not, that sometimes makes the pain go away people.
    There is always someone worse off it seems.
    I realised, I had FM, my life needed rebuilding, I said my good byes, and today, I am only depressed when I feel loss on those rare moments when I leave myself vulnerable.
    It has not been easy rebuilding my self esteem let me tell you.
    It's like being at a job 20 years, poof your on the street and what do you do.
    It's the same barrier as re training. Anyone that has found they're dead ended work wise has been there actually. Same skills apply. Start thinking "what can I do now?"

    It's actually easier to build a new life, than cling to the shreds of the previous one. And let's face it, your previous life will be in shreds. And it will look like it.

    You only need look at it from the angle, what options do I have that might not have been around before?

    In my 20s I wanted to teach history. The 6 years of high cost teachers college was beyond my means.
    Today I am on a pension. I might actually be able to spend a bit of time doing volunteer teaching now. I have the time, and don't require it to be a profitable activity, and as a volunteer, I frankly don't have to worry about getting genuinely hired. Volunteers are free after all. Not to mention, if you think the place you are at is run by an idiot, you are free to say so. What can they do, fire you

    I wanted to run a woodworking business. In the years since though, I have made a few "for cash" creations. They have been more or less limited in scope, but, I have also made it plain to the customer, they were getting what they wanted, for half the price they would otherwise have paid.
    Being on a pension, I only requested cost of materials, and a small bit of pocket cash for my trouble. I took a lot longer to make the item than normal, but I was not required to "get it out the door" either.

    These little successes will make you feel good. But you need the edge to make them possible.
    That is why in a previous post, I have recommended single FM sufferers seek to adjust that circumstance so they might not be so rough off financially.
    For those in two income families, your hardest decision will be in deciding, "how do I downsize so we don't absolutely need both incomes.

    If your life is pure hell from constant pain, because you won't adjust, it might not be worth it to cling onto things that force you to do the things needed to cling on.
    And no, it WON'T be any easy thing.

    I am currently moving. I am moving to a place that is a great deal nicer looking. My hobby room is a great deal bigger too.
    But, I will NOT have a shop. No basement to make do with in the absence of the work shop as I picked a single level place to eliminate stairs.
    The floor space total is not numerically as much as this place. It means I will have to ask serious questions about whether some articles are really worth keeping. And I have made it plain to wife and son "be prepared to give up something".
    And as I am losing the shop, I made it clear to them, complaining about what they might lose, will not be appreciated.
    Hard choices all, and it affected the whole family not just me.
    But I had to make them.

    I could always dump the pension, get a job, force wife to work full time, maybe just barely get enough income to buy a basic home.
    And at the end of the day, I would have the home, and absolutely no desire to live in it (because my pain would saturate my life).

    Pension, I mention pension alot. I realise not everyone will have this option.
    Some are simply to prideful to consider it.
    Some simply will not let go of the need to have the physical possessions money brings.
    Some will pick not giving up a career, regardless of how much the pain bashes the hell out of their ability to enjoy life.

    I choose to endure being on a pension, to have a brutally fixed income.
    My pride, yes it gets kicked around occasionally.
    Some people do indeed call me a lazy *******.
    Some think I am just a leech on society.
    It's going to always be possible for you to locate scum that just won't care eh.
    But, I don't spend every waking hour in pain from being forced to push myself beyond what fate has decreed is my new limit.
    I spent a long time not feeling very prideful being on a pension.
    I don't like being on a pension in some ways.
    It matters a lot to a male psyche, and I think the other guys around here know what I mean.
    But, at least I have a reasonable place to live, reasonable clothes and I eat well actually (depends on how you prioritise life basically).
    And I do all that without a full day of pain.
    The choice had to be made.

    It again comes back to the actual sufferer sometimes being the hardest person to deal with. YOU might be your biggest set back to recovery, or at least the ability to cope with your FM.

    Last edited by Grognard Les; 07-03-2005 at 06:27 AM.

     
    Old 07-03-2005, 12:32 PM   #12
    girl75
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    Re: General first timer greeting to community here

    hello, i am actually in the stages of applying for disability. i have been denied a couple of times but refuse to give up because i know i cannot work. i also worked for fourteen years and put money into the social security tax so if i became sick and could not work it would be availible to me. i wish it were only that easy though.
    this weekend my husband and i have discussed giving up our house because it is getting harder for him being the only one working. i told him that i did not mind because it did not matter where we lived as long as we were happy and we were together. actually i would really love to down size because it is so hard for me to keep up the house and we would actually have more funds to do the things we have not been able to do.
    when i had to stop working we had to cut back on alot of things. well all i was working for was babysitting since it got more expensive after i had my 2nd child. whats good is that both of our cars are paid off and we don't have that worry.
    i actually like living in a place where i don't have to worry that if something becomes broken i don't have to fix it i would just be able to call the landlord.
    i always moved around as a child and never went to the same school so i am use to it and like the change in scenary.
    well i hope you are having a good day. my husband just bought me a 10 dollar manual treadmill so i am going to hop on and see how i do. i know i sure need the exercise.
    your friend,
    robin

     
    Old 07-03-2005, 12:52 PM   #13
    Grognard Les
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    Re: General first timer greeting to community here

    Hang in there with the disability process.

    Up here in Canada, the first time I actually had a lawyer present. Idea being he could ask me key questions I could answer for the review boards ears.

    Looking back in retrospect, I think the lawyer pocketed some easy cash from the system, and had to just know the first case is always denied. I think the whole process the first time was a big balls up waste of my time.

    Second time I said screw the lawyer. When they asked me what I expected to do if I was not accepted for a pension, I told them flat out I expected to die on the street penniless and leave my family with nothing.
    I actually had to say that several times.

    I had just finished a small business course. I had the business plan right in front of me eh. They kept asking me as if unable to hear anything else "what sort of work did I think I could do". At one point I felt a strong urge to scream "can't you dumber ******ers hear what I am saying? If I had ANY energy at all, I would be running this business, not slaving for someone else".
    And they just kept asking.
    So I was either saying, if I don't get accepted, I will not survive the refusal, and if I could actually work, I wouldn't need to.

    They refused me after that hearing too.

    They also refused me a third appeal.

    Then one day I get this phone call out of the blue. I had been accepted. I hung up almost immediately after they had made that clear. I didn't wish to continue the conversation.
    I also by the way, have as little to do with "the powers that be" as possible.
    Bureacracy is best dealt with by not having anything to do with it, it seems.

    It is likely, that if you get accepted, there will be some form of guidlines accessible online. I went many years oblivious for the most part, of all that was open to me.
    This site showed me a lot I was unaware of.

    http://www.cfcs.gov.on.ca/CFCS/en/programs/IES/OntarioDisabilitySupportProgram/Publications/odspisdir.htm

    You will want to find your equal to that sort of documentation.

    Last edited by Grognard Les; 07-03-2005 at 12:55 PM.

     
    Old 07-03-2005, 01:12 PM   #14
    girl75
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    Re: General first timer greeting to community here

    you know i had an atty when i went to my hearing and he was useless. when i was denied from the hearing i recieved a letter from my atty saying that he would no longer be able to help me with my case. i thought to myself, he did not help me anyway. i then started doing my own research and found alot of useful information and similar cases to mine on the internet. i wrote my own appeals letter to the appeals council asking for a remand and came up with more medical evidence that the atty did not even mention. so hopefully they will give me another hearing. i am kind of glad that i do not have that atty anymore because if i was granted social security i would have had to pay him. maybe it was a good thing.
    talk to you soon,
    robin

     
    Old 07-03-2005, 05:28 PM   #15
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    Wink Re: General first timer greeting to community here

    Hi,
    Girl75 don't give up on disability!Here in IA. our atty's don't get paid if the case doesn't get accepted. Call S.S. and tell them you need help filling out papers,forms., appealing. They have to help you. NO matter What DON'T GIVE UP!!


    Les,
    I liked your post also.
    My husband and I both are on disability- with no pension. So I know the disability checks are poor excuse for living on. My husband worked 45 years as a mechanic 10 years in Middle management. He got divorced and cashed in his pension to pay off bills and start new. Figuring he had a lot of years to make another pension. Well life desided not. Thank Goodness my health did not go down until he got his disability. Not that my wages did any more than buy gas, grocy's and keep the utilities on. But we made it though it.
    If people think we are lazy or trying to get a free ride----Well, I will change places with them if they have their health and a job! I'm new to all this pain,
    and I'm trying to deal with it. Some days better than others. But that's life.
    Yes, there are people worse off than I , but that does not mean I'm that much better off either.

    So in closing. Life is one big ride full of twist and turns, Ya just got to do the best you can and try to be ready for the ride of your LIFE. Keep the faith, and keep fighting!!
    __________________
    movin slo but still movin
    Sue
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