ladyt

hi.. i loovveed to dance, dont know if i was any good at it, but i loved to dance.. Ust on parties and dance clubs etc.. took swing classes and ballroom, but i keept falling down.. And not many wanted to dance whit me, fainting seems to scare people a bitt..=) keept dancing intil i ust couldnt anymore.. I miss it a lot, but i dance in my mind, my dreams and my soul... And hope to dance again staning up and moving around...

hi So sorry to hear about that awfull doc... Why are there so many of them..? I stopped to try to gett to the bottom of this because of them, and the nice ones too (its noting more we can do).. And then i visits sites like this and know there is lot more to do (have had ttt and hart stuff tested, but not any other test for dif reasons for dys) I changed my gp and i am pushing her more.. but o so slowely she respond.. But I am referd on to some other spes.docs now.. And preperd that it will go like always, docs whit x-ray vision (acording to them self) and bad aditud... Its so frustrating to gett no where.. Docs fear what they dont understand.. Curosity is def not a part of them... I ust wonder how desids that some people should suffer whit out much help and support from the medical comuity.. I wish my brain was better working so i could give lessons to bad docs.. not that it would help much but.. and suzie and U are not a lesser person for letting the doc gett to u, the doc is the lesser person... Is ust thats docs like best simpel things like a broken bone, heartatac (whit classical symptoms ofcourse),. and if not strigt forward they whant only one symtom, more than that confuses most docs.. Sorry I am a bit harsh.. but my track rekord is so and so.. and I do know some nice one, but never a doc how could help me whit all this stuff.. ore even try.. Its like if u have that many problems u most be faking it.. heelloo..

hi.. The closest person to u are u.. So dont feel bad about our own felling ust because others are worse of.. Last spring was very hard for me, i tryed to push it away, thinking, i am blessed comared to so many people in theis world.. But it ust made me feel worse and worse.. My feelings was real.. Being cronical ill for years is hard.. And somthimes u feel so helpless and alone.. u are alowde to vent and complain.. That can help getting things out, lett out the hurt.. The ting to wacht out for is bitternes i think, then u harm not only others but our self.. i dug my self out, sites like this was a god help... getting to complain a bitt.. And i faund my inner strenght ones again.. and i cryed a lot.. I have movies I wathc if i need to get a god cry (been a while now).. But at that time it feelt like i was stuck.. and I did not seek others, i whanted to hide.. a bitt ironic, since being so much alone was a big reason to the blues in the first place... i put a date and happening to end my blues ( a party, i puched my bodie to its limits and ower, but i piced up my mind).. i try my best to improve my life in every way i can, and exept its limitations, but i also think the blues will come and go.. i ust try to find my ways to grow and gett stronger whit out stop feeling.. being a lot alone is one thing I have to acsept... And in every way i can i try to not become to isoleited.. sorry about the spelling, bitt foggy to day.. hope it made some sense.. U are not alone, even if it feels like it.. i hope venting here helped u.. keep venting.. A pity party is a party too..

hi.. laugh is medisine..=) I have pick me up movies and tv shows.. And somthime to comlaining is a pic me up, ust gett it out and than life is lighter..=)

hi sounds great.... never taked to others whit dys, exept on forums... but I am a diansour when it comes to internett and computers and stuff so..... and living in eourope i gess i am on a bitt difrent time sone than most of u... but having insomnia i gess i could spend my waking night hours on compunter insted of in bed..

hi.. Sorry to hear about our co worker ... It seems like people have a hard time understanding cronic illnes, and if its on thats unknown its even worse.. It seems like people talk alot about their illneses and others to me (strangers and others).. Why i dont know, probly difrent resons.. Its hard when u feel like people around u dont understand.. I have people in my life i wish would understand a bitt better that i try my best.. i gess They dont really have to understand as long as they dont judge me... But i gess we humans put people in boxes to make the world easyier to understand ore somthing.. But the world is really complex, and so are people.. The sad thing is that its so easy to draw back from people, so hard to put our self out there.. Some say I am to sensitiv when it comes to people utterings, but its hard when people hurt u... say stuff that tell that they dont beliwe u, ore indicate that u are a weak weak hypocondriac ore somthing.. best luck to u all..

hi... CONGRAT on a nice date...=) There is all sorts of people, and some for difrent reasons dont find love before late in life.. U are not the only one... I am ust so happy that u had a good time... And if u go on more dates, mention the dys ting when natural... U dont have too poor uor soul out when dating casuall...=) best of luck to u

hi.. u def put words on my thougths (not sure about the spelling).. And itd not only ins usa, its here in europe too... belive u me... very enoying.. Yes one can do alot , and many thing is possible, but not all.. there is many things that is what it is, u cant change it, only our attitude towards it.. It has taken me many yrs to realise it, but too many in my surrandings dont gett it.. change is difficult , and sometimes not possible.. Its like the aa saying, somting about change the things one can for the better, but acsept the tings one cant cange, and realise it... not my cleares brain day sorry folks...

hi.. meeting people when singel can be a bitt sceary, but it can also be a lot of fun.. Try to fokus on the fun part, and that u gett to meet a brand new person.. Its like a gift, u dont really know what u get and if its somthing u need.. But its a gift.. (i love gifts so..).. and if somthing imbaresing happen, try to have a light hart about it (not always easy but, and if u dont see the humor when it happens it might be a fun andectote to tell our friends).. when I was getting to know my boyfriend all sorts of imberrising moments happend.. And she is probly as nervous as u... For me it helped to lower my expetesion (of my self and others..=)), and keep and open mind.. i hope u have a nice date, and that u enjoy it

hi.. i cant really exersise anymore... But i try to move as much as I can.. When i was abel to exersise running was a problem for me, more then other stuff.. i could run a bitt one day, but not the other.. i tryed very hard to better my running ability, but was most of the times out of breath.. Strengt was more stabil..

loved our list shannon... positiv thinking is positiv, but its not a cure....!!

hope u gett better soon.. and have a nice birthday

hi..=) Hope u are in the 80%...

Hi.. u are totaly alowed to have a pity party.. I have them too.. And i think they keep me sain, but if every day is a pity party one might need some outside help.. Its a good quality to see that some one els may be worse of, and it might keep things in some prespective.. (i am great full of living in a peacefull contry etc , dont know that many sick people).. But the closest one is one self, and our pain is real.. That some one have canser, does not make our strugles less (if u know what i meen..?) momosara It nice to hear u take our dauthers feelings serios.. becauos saying be positive etc might come from a good place, but it can feel belitleling for the one going throu a bad spot.. but ofcourse a reality check and the keep up the spirit has its moments too.. I my self whis my mom could be a bitt like u (not that i know u but u know), lett me be sad, agree on the fact that my life ***** somethimes bigtime, and that not all has a solution ore go away like a bad cold.. have a nice party everyone, if it a pity party or ust a party..

hi.. I have always been in the middle.. i love being sosial, but really need my alone time too.. That is now i gett a lot of that, alone time.

hi.. Docs and er are for people, they are not vets (in my experiens vets treat their paitens a lot lot better..=)) , their job is to help people gett well.. But they seem to have forgott it.. And they divide between patients, some are intresting/really ill etc but others are ust to weak and hypocandriacs.. ( this is not trhou of all docs ofcourse but..) I have had my er experiens yrs ago.. now i stay far far away.. and in the past I was shiped to the er when unconsios.. But still i feel that if u feel u need urgent medical help u should go to the er...

hi.. The way docs treat their patients never stops to amaze me.. They are suposed to do the best to help people stay healthy, ore have I missed the point..?.. To bee ignored and ridiculed, talked down too and treated like a hypocondriac (well hypocondriacs also deserv desent handling, they have real problems too). i whant to gett better , i whant a better life, i want to be abel to be active, i wanth to work... I need the help of the medical comunity to get to that goal.. The docs and medical comunity have to much power of defeniton, they can say its all in your head, when it not, they can say deal whit it, its not a real problem, when it is.. empati and respect , words they migth know but not understand many of them.. First got thaken serios by a doc that sayd i whanted to take my tests again.. he didnt mean any disrespect to the docs that had tested me before, but whanted to se for him self.. That doc was great, they had done the test wrong before (the tilt tabel etc)... Docs are human, they do mistake, they dont have all the answers and they are not holly any of them.. ups.. i think i have a lot of bouilt up resentment of the medical sosiety.. And it is interfering whit my dealing whit them.. its not that I am scaerd of them, but feeling very uncomfertebal and uneasy near them, nice ore not.. best of luck to u all

hey is it great that we are all so great looking...=) at a party a women told me that i was too cute too bee sick ( i ended up fainting and was still too cute )... I think that somtimes one gett a bitt sensitiv whit a so caled invisible and litle understand condition. Not being belived by peers, medical people etc.. I try to take it as as compliment more than not, but it depend on the situation.. the you dont look sick is a bitt harder to handel, but i try to ignore it. this so called invisible thing is fare from invisible inn my life.. and if people chuse to think i am a weak being and a parasite (dont work), well so be it.. When it comes to strangers i dont care at all, byt family etc... well i cant forcse understanding on them..=) so dont feel bad for looking good, spes when felling so bad... and makup is wounderfull.. mineral powder and concselar ....

hi hi ..... Family and parents are people too, and people are strange. Non of us are perfect and generally we have a way of try to figure out the world in easy boxes. We do jugdje on to litle or no information. Most of us have a lot of potensial to grow more emathi and understanding. Its hard when the people closes too us dont understand and even belive us to be "liars" or hypicondriacs. because strugling whit health one need some suport now an then. ust too keep the head over the water... Its a bunch in the stomac when people close to one direct or insinuet that on are not trying hard ore its all in our head. hang in there... this site is full of people that know what is like....

hi.. I think people like that is all over the world.. They think of them self as good people, that detect fraud, but they're not.. They are full of predejuce and ready formed ideas about what handicaped people should look like.... And they lack real empathy. And i think some are (like some of u mentioned) jealous of the tag. yes it is nice to have the tag, but i rather be healthy. And the best thing to do is ignore them. Or embarrass them if one have a sharp tongue.

hey had to travell all the way from europe too the usa to get diagnose... this was bach in 98,,=)

hi.. There are alot of horror stories. Up her in the north of europe we are supposed to have the best health care for all. But it is not the case for all. Even here education, rich/poor, gender etc plays inn. I know a woman who worked at a hospital and desiaded to lose weight when she experiensed how bad owherweight people where treated. woman whit stomac ace, and when finaly somebody lisent, it was to late, canser spread to much. I had to go to the states to gett diagnosed, and when returning, even whit a diagnose, i had a very very hard time finding a doc. I feel like the stepchild (sorry for the neg use of this word) of the healtcare system here. Nobody told me about my rights and other posible help. And when our head and body is out of work most of the time its hard to gett the info needed to gett more help. But a lot of people gett great help in our system, and thats a god thing, i ust whant in on it too....

hi.. some doc has a good complex and and x-ray vicsion, at least so it seems the way some of them behave... In my early days I meet a lot of them.. Dont have to do test u look so healthy and are so young.. but i faint all the time?, it all in our head litle girl, ust snap our self out of it, be stronger... I have i very ok card doc now, cant really help me, but he take its seriosly. Had a nice gp, but have changed to a new one no. So a bitt worried what sort of doc she is.. since i had so many bad doc experiensses in the past, hopfully shes a god one

hi.. I feel for u all.. I dont work, would not been abel to. ( i am very greatfull for the velfare system in norway, its not totaly perfect, but it is here.) One positive thing about seldom be abel to leave the house is not having to hear , but u dont look sick thing. So i gess being alone a lot of the time has its advatiges. I thing healty people dont have any clue, most of them are nice at hart, they ust dont understand. And even if they try to, its puzzling to them. Spesially if the have not heard about the thing before. My friends (dont se them often but..), always whant me to come to town to meet them. like they are being nice to drag me out of the house. I enoy being abel to go outs side when i can, but its hard to do so whit this body. last couple of mnts i have gotten a new friend (not esy, when seldom leaving the chair=)).., and she visits me..!!!! maks me so happy.. To make people understand, well some will not, even if the gett ill them self. And its weird, but if u have a diagnose as pots, it seems like a lot of people thing u can be all better ust by will. But they dont say the same to people whit more known illnes. Its all in our head aditudud some people have is ust so enoying. But so a lot of u have said, one have to rise above it. best of luck to u all

hey everyone.. To cope whit this syndrom is not easy. And the hardest thing for me have been trying to explain to others. for many years i ust didnt talk about it, i did how ever faint all ower the place. I have been very hard hit whit pots the last couple of years, i try to gett so healthy as i can be. I have outdoor and indor wheelchair. When I use the weelchair people asume that i am not like others, most think i have been in an acident, because i look so healty. The healty looking curse, its one of the fals things people belive in, that u can se illnes. most of the time u dont. I know terminal ill people, that look healtier then most people. And the curse of having somthing that no one knows that much about. Its a sad thing to say, but this syndrom needs sombody very famose to gett it and be open about it. I have tryed the spoon theori on a few people, it worked both ways, sreard of some and made another understand. But i have tryed to be open to others the last couple of years. It is the most difucult thing for me. One feel so esy to hurt, and its hard to explain. To the people i show my indoor chair and so understands better, they se the difrens in me from walking to driving around. I say somthimes to people that standing for me can feels like running very fast, when dehydtated and in warm climat at the same time. and if ust standing feels like a maraton, of cours i gett very tiered. ust that my body can have the maraton feeling ust after very short time. I would like a good tipp on how to start talking about this thing to my in-laws. we live very close, but i have never talked about it to them. The last couple of mnths have i tryed to find and opening, but no luck. I am and open tabu. every ones know, but no one talkes to me about it. i whant to be abel to make people around me understand. The people one have closes need to know to understand. It also hard when meeting new people, what to say.? and how to say it. I am so much more than a sick woman. When in weelchair, people tend to be scaptical, but to timmid to ask. when not, i often talk around , like what i do for a living (nothing), and how i spend my days. I gess there is no easy answerd and no way that works in every situation. My boyfriend i am lucky, he understands most of the time. we dont talk much about how it efects our life. i gess we should. i whant to grow old whit him, but i understand if its hard to live whit me. i gess i have more questions then answers. But this illnes have made me more sensitive to what is behind the covers, when it comes to others. That ust by looking there is no way to know how that person really feels. best of luck to u all.. and if u have some advice that would be lovly.. And if i find some i will write..