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ladyt

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Everything posted by ladyt

  1. Sorry about the bad appt. i so understand and have often , fare to often, felt some what the same... It seems like there are more health care people that dont understand that do.. Do they think they comfort us when saying stuff like that? ore do they dont belive us? i dont know, and I havnt found a way to respond to that.. Some say change the dos etc.. And i have many times, but then many times that not an option. And for me now its better whit the devil u sort of know then.... i wish u luck
  2. Hi.. I have always had bad reactions too food. Bothe system wise and skin. Some things i never tolerate others i somethines do find whit and then gett a really bad reaction too it. I dont tolerate milk anymore, i try to use litle white flour , but dont avoid it. I cant eat garlic (i think its because it lower the bloodpressure). I try to stay away prossed and allreaddy preperd food, cause many i react really bad to. I hacve to be carefull whit tomatos and mushrooms, chicken. i also have suddenly bad reaction to peanuts, strawberrys and much more. I dont remeber rigth now. Bitt foggy=)
  3. hi.. I tryed to read all the replys, didnt quiet make it... I have been aflicted whit this on one way ore another my hole life. But it gradualy grow stronger. I dont know how i would be whit out it anymore, pots is most of my life. But i am still me. I think the illnes has given me stuff to. But it as taken more, much more. Thats ust me being straigth about it. But isnt it so that one has to take the good whit the bad I think venting is importan, venting and getting it all out makes it posible to stay positiv..=) for me it does... The right day a list might be cleansing, but not today. I dont feel like crying...
  4. Hi to u all i so miss really exersising. But its been many many years ago, not in this century actually. Last time did some real exersising was 1999. THat year I really did my best, and during the year my conditon ust declined, even when working out several times a week, bicking and walking every day etc etc.. Since then I have tryed to do my best. At times I have been more og less bedridden, and most of the time recliner chair ridden. I think of all movement as exersising now, to build my selfesteem .. I wish i had a more fitt bodie, like i once had. I am all gely now. Cant say I like it. But worst of all is having this bodie that doesnt work. But I have a recumbent bike. when I can I do a min or two on it. More than 3 min I gett sick, so no piont then. Cause if I have to lay down for a day or tre well that getts less movment. And I am ust starting once a week in the heated pool. I wish I could go more regulary, but its a long waiting list. But now i have a few times. I cant really swim or any thing much whit out getting really ill (fainting and stuff). But its better than nothing i gess. I dont know why my exersis intoleranse is so bad, i really wish i did so I could fix it. But thats why I have taken the every movement is exersise route... I ust whish i could move some more than I am abel to best of luck to u all...
  5. hi.. I see u allready have gotten many good advices. All people have their own challenges, but for people most feeling left on the side line i think is very hard. When peole say they like to be diffrent is mostly in the meaning a bitt better or somthing like that. Being ill is not somthing one whant to be. but once one have an illnes, well u have to deal whit it. I used to be very very in to denail and positiv thinking. Mind over matter. If I kept thinking i was healthy my bodie would cathc up. i found out they work togetter , positive thinking is improtan but it is ust that. For me when i realised that the positive thinking was not going to make me heatly and all the other stuff i also tryed. I whent trhou some grieving. Now i am still in to positive thinking, and some short time grieving and getting anger etc out. Whit an unheatly bodie I need to keep my mind as healty as posible. And i have realised that many things i will not necesary work all the way trhou, it will continue. Somethimes i will feel badly about it other times its sort of okey. Like not working, being so depentent on others, losing friends, lonliness and all the pots stuff of it self. Dealing whit painetc etc. Feeling left behaind is a bigg part of that. when i planed this response in my head it was much more fluient. Bitt foggy to day. But I gess all i really whant to say is u are not alone. Here online we are many on the sideline. So many that we are not standing alone. Even that it might feel so in everyday living. So internett is one thing to be so ever gratefull for. Its a life saver bigg time. And i am greatfull for tv, and my large dvd collection. And like others have mentioned finding somthings u can do , how ever small, is great. I have difrent leavels of crafting. I was never any god at stuff like that, but i have had years to learn. i do some small knitting, scarfs and hats only. I do some embroiding, very slow and not much a year but still. i have a plan to learn quilting, and bought a sewingmaskin. But troble whit does are u have to sit whit legs down. i dont have much time to that. And i have other crafting stuff laying around. So days i feel better i have lots of things to do. Problem is there is all this other stuff to do in that limited time. sorry this was probably not the most coherent reply but still..
  6. Hi. Its not easy dealing whit hurt full comments either rigth in front or backtalk. But i prefer the ones directly to my face, that are straigth forward. The backtalking is harder, one wasnt there so harder to defend one to. But as long as i dont know about it I gess i dont mind that much. And then there is the passive agressive or indirect comments. they are really hard to deal whit. I think does sort of remarks are the most difficult somethimes. Sepsialy if u feel like the butt of every ones els joke, and u are not in on it. Dont get me wrong, humore is importan tool , its a bigg part of my life. I can def joke about my illnes to most people. And if they joke back i dont mind most of the time (ofcourse depend on how they do it). But when people I know dont exept my illnes and think me full of nervs makes insensitive jokes well. The advice about lett the hurtfull stuff ust not gett to u is, well the best thing to do. But its not always one manage that. We humans are beings of feelings. I desided that i would try to laugh of the stupidity of people and feel sad for them for being so ingorant. And use my experiense to be more awer of others feelings. If I was an angle I migth akomplish what I sett my gaols to bee But dont lett the hurt eat u up. Gett it out. Writing here is a god choice, suronded by people that better understand what u are goin trhou. If u have friens u can talk about this do so. If it gett me i migth listen to a sad song and cry. or an angry one and scream. The people I dont really like that much i never cry over their comments I gett angry. So I play angry music I never talk much about my illnes thou. People that are healthy ore semi so ust dont have the knowlege to gett what this is about. I gess some of the worse are some that have minor issus and think if they can do what ever so can every one els.. I had tennis and golf elbow (still sort of have). And yes its painfull and can put limits to what one can do. But its not the same as pots. (I had it in both arms, shoulders too). have a nice day every one, lett the hurt run of
  7. hi.. Well i cant downlaod any of the wiuings from europe. And we are far behaind season wise here. Well when waiting for somthing god etc. i am ust glad that pots is getting out there. We need awerness=)
  8. hi. What season is this on? i could not wieu fox from here in europe so. its to bad if it ust makes more bad info out there about pots. We dont need that.
  9. hi.. Pots have def made sex and orgasms more difficult, but not imposible.. I actually ussuly have them when sex.. But not so often sex as i would like ... U might take a privet moment to find new ways that makes u gett there, and then intruduse that in to sex whit your partner.. I have done that, since i dont gett them like I used to, have to put more effort into it if u whant some more spesific tips send me a privat message and I will answer...
  10. hi...=) Brye, love that drink my self, but been ages since. . I do drink smothies, and they usally benefit me well.. Juce every day, grape for breakfast.. Usely appeljucie during the day (no added suger).. The appeljucie i find benefitting for my bladder.. But it has to be whit out suger.. I use to drink lots of cola, not so much now.. But when migrain hits its the only thing i gett down.. For nausea i have found that appeljuce can be ust as benefitting.. But i still drink cola every week.. But not every day=) i drink a lot of water if not nausea.. Gatereode only on speasaly ocations... Milk i dont drink, cant tolerate cow milk so..=)
  11. Hi.. welkkome Sorry u have to deal whit this.. But happy u found this site...=) I have all of the stuff u are asking about.. But I dont know if I have the diffrent sized pupils, I now that they are reacting funky (confirmed by a nero doc, but that was all she checked).. The hart palp, the tacky and blodpooling is not stange to us potsys, so u are in good company here.. I would read to the info on this site, u might gett som tips on how to deal better whit stuff.. But what works for some doesnt for others... I have the sloooww bowel movment, but others here have the oppisit or a compo... In flare ups what i call very potsy days, for me its ust laying still, watching bad tv if I can and wait til it passes.. It does eventually.. But I am never pots free any more.. But It varyes very much how people are efected whit this, from mildly to totely bed ridden.. And its very common that it varies from day to day, hour from hour... Stabillity is not a commen trait of pots... Hope this site will bring u info that will make dealing whit this stuff easyer..
  12. hi.. if u draw the long line my pots have def progessed in me.. When i was a litle girl i think stomac ace and nausea was the worst, along whit weird puls and mild dizzynes and stuff like that .. Then i got more mild symstoms that would grow stronger.. At the same time I have had worse periods than now (not being abel to sitt at all etc).. But that was before meds, and after meds when i tryed to work again.. Now my symtoms is all over the place, and they are not the same from day to day or week to week.. But I am never symtom free any more.. My cardio hoped i would grow out of it.. but i didnt.. many do, most I am told.. I am over 30 so, and had it most of my life..
  13. hi.. i think many whit cronic illneses somthimes can feel guilty about being ill/ not getting better.. is somthing i am strugling whit my self time to time.. I do feel I acsept this illnes better now, but still I have a long way to go.. I resent the fact that I dont have any real help from docs... that I dont know why i have this stuff.. Not knowing is so hard.. And i feel guilty about my boyfriend having so much to do because of me.. i used to feel guilty about it towards my family and inlaws.. i dont any more.. I have a lot of conflicting felings somthimes.. Like I know I am worth as much as any person, i know i can contribute etc, but at the same time I can feel low selfesteem about it all.. Like why am i still sick after all this years whit positive thinking and trying always to do my best etc.. its the luck of the draw i gess.. cronic illes u have to live whit, u cant winn a war against it.. And u have to acsept that that others will not understand.. And be gratefull for the people that try... And be happy and enjoy all u can, and dont feel bad about needing to griev somethime...
  14. hi.. The views are totaly worth it...=) have a lovly wounderfull tripp...
  15. hi.. I used to be a bigg time fainter, and i still do it time from time (yesterday actyally).. Its one of the reason I use wheelchair.. But I can faint sitin too (did yesterday).. many many years ago I did gett an anxiety attatc after fainting in a pub whit peole i didnt realy know in an ust moved to a new town (it was not my first fainting,).. The anxiety attac sceard me silly , so i desided that I would never have one ever again. So fare i have managed that.. But I am avare that can be imposible for others for difrent reasons.. Like I have tryed for years to not pass put or ust become a uselless yellyfish.. So fo me I could try to controll one element, my fear etc.. This stuff take to much from my life allreaddy... But of course because of the fainting and the rest I have stuff i dont do, or only at a better moment/ extra help.. Like I dont go swimming alone, and only whit people that are comf in the water and whit my stuff.. If I am going horesbackriding i have an entourage (other wise they say no).. Thats why i havent been on a horse for about two years or so.. I can relate to a fear of fainting.. But whit all the stuff your body is doing, added fear is better to shed.. Very easy to say, and often very hard to do.. But if u canfind a way to lessen it... By talking to some one, writing it down etc etc.. But u should se a doc about it.. I am on midodrin also, I faintet much more before it.. but as i said, still faint.. And DONT gett emberrased.. Its nothing to gett emeraseed about.. Its an awfull conditon.. But i do understan why u can feel emmerased etc.. For me whan i faint, after I am usealy a bitt out of it, and that in a veird way help. Cause I have to use all myenergy to gett home ore to a better place and gett better etc.. And I sort of try to tune out people aruond me (expet a few).. Sometimes I gett angry/frustraited, like in situations that are spesial etc.. Like in weddings and stuff like that.. i dont whant to be the woman that always faint (but i gess i am).. I would like some positiv atension, not over a stupid awfull thing like fainting.. And people gett so weird about it.. But whit my wheelchair i last longer.. So the last wedding i fainted in was later in the evning.. still not fun but.. Fainting along strangers when i have my parter or mom whit is no bigg deal.. i will never se does people again.. To day my goal is to never faint again, or try my hardes (i know i dont really controll this, but influens i have), so when i faint i gett bit anoid .. Sorry I had a nice weel formulaited post in my head.. i dont gett to express it ust like i wnated to , bitt all over tha place.. brainfogg.. best of luck.. And dont be emberast about it to your doc, gett hin to help u..
  16. hi..=) thanx for the response...=) I hope the doc is of the open sort.. I dont have a primary pots doc.. What I have is a sort of nice, but cluless gp.. The difrent meds i have tryed is trhou a nice cardio doc, but he is a pacemaker spesialist.. Pots doesnt exist as a diagnose here... If it hadnt been for this site i would have walking in the dark (by the way didnt gett my pots diagnose her)... But it still so frustraiting.. having all this stuff and no real help from the medical world...
  17. hi.... Hmm... small country, so docs doesnt see much of sebras, thats to say they think of all as hores no matter what so... But u never know i gess.. Do u know of tests one should ask for that might be helpfull..? hope u all had a nice weekend
  18. I hope u dont gett any altitude problems.. Do u have a wheelchair ..? Would love to se pics... All mine are from befor the digital eara so.. But I am actually looking at crand canyon now.. have it in frame and in my living room..=) Along whit a pic from devils garden from arches national park... Are u staying for long..? The last time we stayed at a camping place close by.. (that when I tryed to hike down).. the sunsett was ust so amazing.. ust walking by the rim was breath taking... love loved loved it... Ust sitting in a nice spot is worth the tripp i think.. it was staring to gett varm when we where there.. So we spent lots of time sitting in the shadow enjoing the landskape (Shadow i admitt wasnt always easy to find..=)) I had pots at the time, ust diagnosed.. But It was not as limiting as its now..
  19. Hi.. have noticed that endo docs are mentioned here at times.. ust woundering what sort of docs thay are and what they can do for pots ..? I am now referred to one becouse of some cyst/mucsel nods (dont knoe what hey can do about that but...).. So maby when i am ther if the doc is opendminded i can ask for some help whit pots stuff.. But what can they do..? would be greatfull for all inputs either u have been to one ore not...=)
  20. hi.. i did stop my period for some years whit a birthcp whit , well i dont quiet remember progresterol or somthing like that. Not the usual whit eustrugen (bad spelling yeah I know, the major femal hormon). That stopped my menstrual migriains and at the time did my bodie well.. Because my periods ust drove my healt to fare down (I have strong symtoms every day, but still varys in lenght , compo, etc).. There are some birthcontroll stuff that can stop your period.. But they work difren on difrent people.. Its migth be worth a try, less intrusing than removing a parth of your bodie.. best of luck. hope u find somthing that works for u...
  21. hi.. I didnt answer the poll because I didnt know what to check.. It doesnt quiet fitt me.. I needed a lot and lot of sleep when younger.. Always dreamt alot, all sorts of dreams.. And waking up feeling paralized etc.. The sleep problems started years ago, and then after hiting my head it got worse.. And the resons i wake up are many, my bladder (if lucky lucky 2-3 times, normaly more all depending), dry eyes, pain, restless legs, and all the potsy stuff. I had a sleep studie, and they found that I had major sleep problems, initial, medial, and terminal insomnia.. I have problems getting to sleep, staying in sleep and in the mornings.. And I dont sleep during the day, even if i whanted to.. And I had very very litle deep sleep, and somthing veird whit my rem sleep ( better read the stuff again).. For periods if I got an half hour conected sleep it was great.. Now i take some pain killers and a smal dose of melantin every night. That doesnt work miracals, not even close. But i migth gett 1-3 hours sleep undisturbed in the early nigth, and then it varyes more the rest of night... Its seldom 3 hours, but it has happened.. Somthimes i take a stronger coctail, stronger painmeds, anthistamins, and gett to sleep pills.. Then i tend to sleep more and longer before waking. But seldom trhou the nigth.. mostly 4 hours, but sleep deeper and faster again most of the time.. I had one night whit 7 hours (i did sleep walk to the toilett but, I dont remeber that so...=))... Somthimes when doing the coctail I ust feel like keep sleeping, like I whant to sleep sleep sleep.. other times I feel lovly refrehesed, and wish every morning was like this..=) I dream of a good nights sleep.. sweet dreams to y all
  22. I so whant to visit grand canyon again.. And next time go down in to it.. I have been twice (long time ago), but didnt go fare down.. I dream of the muletrips down that takes 3 days.. Hope u are abel to go.. its ust an amazing place... One of my favorites if not the favoirte.. to bad i cant deal whit the long airplain tripp ...
  23. hi.. Whit out this site i wouldnt know what to do either.. I still feel very lonly whit this stuff, but I know I am not. .. I know many people are very sceptic to sites like this, say the makes things wors and people think to much about their illnes.. maby that is true for some people, like people strugling whit health anxytety etc.. For me It as made me sort of healthyer, I gett tips and advises.. I gett a better understanding of a crazy bodie. There are not any spesailist where i live. The docs are mostly ussless for me.. I am so greatfull for this site and internett.. It keeps me sain... have a wounderfull day all of y...
  24. I used to... MISS it so much.. My family have horses. I have tryed a few times last couple of years. But since I pass out, the people around me is a bitt afraid when i do. Even when walking beside me, and the horse only walking.. And yes i have passed out a couple of times when on the horse, beside the horse etc etc.. I whant to go horseback riding the next time i visit my family (thay live some hours away..)..
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