StaceyYount

Hey, Guess I get keep Colin, thanks! Jim may cuase a rukus and so may Colin's wife but since persephone seems to have relinquished him he is MINE! heehee Stacey :-) By the way lovely poem StandUpSitDown, I loved it. It seems many of us write poetry. Hope it is not a cause of POTS hehe

HI, Well I went to chinese doctor and she eased the pain though easing the pain hurt quite a bit. The best thing she did was let out some of the blood so the pressure was eased too. ( gross I know but it helped). The sad thing was that I was trying to be careful, I usually just kick the cooler out of the way because it is always in the way. It is just a small one that Jim leaves lunch and cold drinks in for while he is gone-- anyway, I have been really off balance so I thought I would be smart and lift it to move it but I dropped it and the corner ( isn't it always the corner???) landed on my toe. Argghghhhhhhhhhhh! Just a side note we have this stuff called Arnica gel and it really helps with bruising (sp?) makes them turn the pretty yellow and then go away much faster. Still can't walk to well but at least I slept better last night. Hope all you are ok today and keep your toes under you! ( in more ways than 1) Stacey :-)

You know what you guys just rock! I can't tell you how much it helped me from feeling like I was drowning to see all your support. I thank you so much you helped me! I did not know about the tape and jsut tried it. No fun putting it on but it does help to walk. Thanks! I know how much we all go through and for you to support even my broken toe and frustrations is amazing. Though I hate that we are all here I am so thankful and feel blessed taht I have found you guys. Stacey :-)

Just wanted to cry to you guys. I know it is a little lthing in the scope of this illness but today I dropped a cooler on my second to last toe and now it is broken. So now the little walking i can do, the 10 steps to the bathroom are now painful!!! I jsut hope no one stomps on mine like they did on Ninas! And of course I do it on a Friday and no doctor to see. I think I'll go see my chinese doctor tomorrow maybe she can help. It is just one more thing ya know???? Just had to have a litlle scream Stacey Can't figure out how to edit the topic name so sorry for the wrong spelling. We really need a spell checker! :-)

Happy Birthday to You (colin firth is mine) Happy Birthday to you ( you can't have him) Happy Birthday dear PERSEPHOOOOOOOOOOOOOOOOONE (I held it lovely if you coudl hear me!) Happy Birhtday to You! (He is my Mr. Darcy, oh those eyes) :-) Sorry couldn't resist the side comments. Hope you have a wondrful birhtday and Colin Firth shows up at your house in a wet white shirt!!!!!!!!! Wishing you happiness and better health and a great year! Stacey :-)

Hey, I so so understand all that you are saying. I got ill 2 months after my wedding and my husband has been so wonderful but it is so hard not to be what you wanted for them. It has now been 10 years and we love each still and in spite of this. Thank goodness for your wife as I thank goodness for my husband. My father is also ill and he says all the time a husband is suppose to take care of his wife but I tell him and you that if it was the other way and she was ill you would be there and that is a wonderful thing to have and to give. That is not making sense but I hope you get what i am trying to say. In sickness and health goes both ways though we never expected this did we?? Like you one of the hardest things I struggle with is what it is doing to him and to his life. It amazes me that he still loves me but he says sick or well I love you (though not as much when you have a headache:D) I guess we have to remember that we are their life just as they are ours. I just wanted you to know how I understand and you know the fact that you are worried about her shows your love for her and I admire that. I do have 2 other men that have this and would be glad to give you their email if you would like. Never worry about venting becuase we all understand and we all support you. And sadly to hear that someone else is going through and feeling what you do sometimes helps. The sadness is that we have to deal with this stupid disease. I wish you peace and a better day, Vent away it helps! Stacey :-)

Hi, Great topic. I am home alone a lot. It surprises many of my family and friends but Jim has to work. Most days I am home alone 10 hours or more. I do not take showers except when he is here. I keep a phone with me at all times bathroom and back, Mayo at jacksonville suggested that. I am mostly bedridden so Jim leaves me everything I will need for the day. Last year we bought a microwave for the bedroom. It sits a step away and he leaves me lunch and sometimes dinner in a cooler and then I just zap it. It has helped a lot. My side of the room does tend to get cluttered because I keep things near me I will need. But somedays isn't it soooooooo hard when you realize that you can't go to the store when you want something like chocolate :-) or a video when there is NOTHING on. I try and not think of not being able to do waht I once could or even daily living stuff people take for granted cause it makes me crazy but somedays it is very hard to wait for everything!! I am not complaining about Jim, he is really wonderful and tries but I wish I could get a hershey bar a magazine and a romantic movie ya know! The other day I got a call and it was a lady outside with a flower delevery. I thought I can go to the door and answer it and get the flowers. BAD IDEA! I almosted fainted right at her feet. Had to sit on the floor and she was looking at me like I was crazy. That was so frustrating becuase I can't even open my front door. Arggh! Sorry didn't mean to go off on that just wanted to say I understand. The fear well I guess I have learned waht to do if I am going to faint SIT! and if I get to sick I call Jim and when he is out of class he can call me back. We have plans for real emergencies but sometimes it is a bit difficult to get a hold of him and on days he is worried he takes his cell phone in to school and I know I can interrupt his lecture if I have too. With time I think you will get more use to it and when you do feel that coming on and when I do I turn on the tv or I come to dinet and type or read away. Hope this helps. Get a microwave in your room it is the new chic thing to do ! I can go on! Stacey :-)

I have a terrible time with this. Jim calls me sausage arms. He is so romantic . Anyway this is a new symptom for me and no understanding why. I don't do the salt either. We are interesting aren't we! Stacey :-) We really need a spell checker on this thing. I type every post twice! :-)

THOSE ARE SOOOOOOO FUNNY! I vote for the newsletter too! You guys have made my day! I am now going to send it to my sister and parents they read us DR. Seuss as we were growing up and they will appreciate it! EXCELLENT Funny WELL DONE! LOVED IT! Stacey

Hey, Here is one web page that talks about that Turbie towel. NOT reccomending this site jsut the one that had best showing of Turbie Towel. http://www.cachebeauty.com/turbie.htm it helps me so much and thought you guys would like it too! Stacey :-)

Sorry that you are having even more yuckiness!! Go step on that students toe with your mighty mouse power! Amazing we have all been through this huh? Jim said one day 10 years from now (hopefully sooner) they will find out the exact cause and a test and then ALL the docotrs will say oh they really were sick!! :-) Hope today is better and upswing is on the way(though you might have all of us hanging on to your golf club hahahahah sorry bad joke) Thinking of you! Stacey :-)

Funny story, I had been ill for about 5 years and had gotten the shower chair quick shower down pretty good about 1 a week. Anyway had horrible headache and had gone to doctor to get shot of demerol and phenergan and when we got home we have the bright idea that I might sleep better if I was a little clean and hubby was going to help so no chair. Fainted dead away and had to call EMTs. Not funny but when we went to see doctor we told him and he said well it is bad form for your patients to faint dead away after you have helped them don't do that again! I am lucky still after almost 10 years of getting a shower once a week. Jim sweet hubby that he is calls me ape or fuzzy bear (though I don't have THAT much hair on my legs!). Just this past year we installed a bar outside the shower door and now I can get out if I am not to bad.He starts the water and helps me in. I always make sure he is here but it is nice now to get out of the shower myself. I do have the greatest thing it is the Turbie towel. I just wrap my hair up in that and it wicks away most of the wetness so Jim does not have to rub my hair with the towel. I love that Turbie towel! My hair well I never blew it dry before I got sick no patience so now up in a pony tail and I am well"beautiful" :-) Anyway you are not alone and we stinkies can stick together!!!! Stacey :-)

Hey,I get the sparkles(it is a bit like confetti kind of fun if it wasn't annoying) which I never saw anyone say they had before. I also get a flash of black or white more black in my peripheal(SP?) backside vision. My phone flashes when there is a call and when this is going on I am constantly checking to see if I have a call. I start to gray out standing but if I sit then that seems to clear. I had a simple serous retinopathy a few years ago that causes a black spot in the middle of my sight, it comes and goes but it does go. Do you guys notice reading problems? I get shadowing and can no longer read my favorite thing! Anyway sorry to run off we haven't had this disscussion in awhile or I missed it. Get thee to a doctor! Stacey :-)

I think that is one of the most annoying things about this illness. You get a worse spell and you are sure it is an extra infection you take the energy to go for the blood test and nothing!! It is like can't I just have a little bacteria(not saying your illness is little but that you wish it was a easy thing to fix) I take a little pill and then this part of this stupid illness will feel better! I am going through that now too. I sometimes wonder if our bodies are just more sensitive to an extra invasion and though the test does not show it the little buggies are lurking there and maybe an antibiotic or a flu pill would help.Also I wonder, if our immune systems don't work as well they won't flare up to fight the bug and so the bug is there and we feel awful but the test does not show it. That is the first time I ever thought of that and you know waht it makes sense huh?? I hear you girl. Sorry and hope you are doing better! Stacey :-)

Hey em! I was sitting thinking about your post this morning and about how others will sing your song for you and this is the song that started going through my mind and I wanted to share it with you and with all our fellow dancers! I sing the body electric I celebrate the me yet to come I toast to my own reunion When I become one with the sun And I'll look back on Venus I'll look back on Mars And I'll burn with the fire of ten million stars And in time And in time We will all be stars I sing the body electric I glory in the glow of rebirth Creating my own tomorrow When I shall embody the earth And I'll serenade Venus I'll serenade Mars And I'll burn with the fire of ten million stars And in time And in time We will all be stars We are the emperors now ( Not sure what this means but good I think) :-) And we are the czars And in time And in time We will all be stars From the movie FAME Anyway it seemed that it describes all of us and maybe it is cheesy or silly but to me it seemed perfect! Stacey :-)

Hey, Thanks for the replies. I jinxed myself and am now in a 2 week headache. It eased for about a day then came back had to go to the doc for anohter injection and then it switched sides again. Now he wants me to go to a nuerologist again. I have been to 4 and none of them have helped. Have you ever noticed that doctors get a certain idea in their head about you and know matter what you say they think what they always think. The first one I went to I put down that sometimes i take excedrin. So to him I was taking to much excedrin adn that is why I had headaches. Now I know that can happen but I only take 1 excedrin, maybe 2 and I know right away if it is going to help. I never take more than 1 or 2 a headache but in his mind that was my problem and so we had to go to someone else. Sorry did not mean to get off on neurologist rant. Just gotta get through this one and then maybe it is time to search for a headache specialist. This past 2 weeks has been unbearable. Any other suggestions? Stacey

Hey all, One of my worst sypmtoms is horrible hadaches that last 5 to 7 days. It is like many of you starting in the back and then moves up over my head and side of head and forehead. I think it is a combination of many sinus, muscle, tiredness, hr, adn hormones. I can usually feerl one coming on but not always. Anyway both sides will hurt but one side more than the other. For the first 2 days it will be the right and then it will switch to the left and be much much much worse. The worst is when it switches back again. When my primary is feeling kindly to me he will allow me to come into the office and get an injection of demerol and phenergan. Sometimes that will help rigth away, others it takes anohter trip to get it to ease and then in about a day it will go away. Do your headaches do this??? Just curious. Stacey :-)

HAPPY BIRTHDAY TO YOU BELATED HAPPY BIRTHDAY TO YOU BELATED HAPPY BIRTHDAY DEAR CORIIIIIIIIIIIIIIIIIIIIIIIINA ( I HELD THE NOTE WELL!) HAPPY BIRTHDAY TO YOU BELATED! I will drink a virtual toast to you tonight and in hindsight I had a bite of ice cream for you yesterday! ;)OKay ! :-) Stacey :-)

THANK YOU SOOOOOOOO MUCH! I wished for a surprise today and you guys granted it thanks! Happy Birthday Laura as well, so nice to know we share a birthday! Corina I loved the Staceyeyeyeyeye :-) It is very hot and rainy down here but was nice last night when I went with hubby for ice cream!!! Hope everyone is having a nice day!! Thanks again it really made my day! Stacey

I had whiplash in 1992. And after that had a lot of pain and as dizzygirl said in a another post MUNGO knots at the back of my neck right near the skull. Still get those and neck spasms adn lots of pain. I did not get bad POTS until 1995 but I wonder now if that somehow contributed to it. Hmmmm We are alwys thinking aren't we? :-) Stacey :-)

Thanks you guys, Nina you are so right "be happy with what you have and be content." I have tried to deal with my illness that way and like you said anything extra is a welcome surprise. Than you for reminding me of that and Happy 13 th anniversary! Julie, It is funny becuase we got so desperate that we started calling driving to doctors visits quality time . We do have laughter and you are right I think it is the best medicine. And he is such a goof ball that I can't help laughing everyday! ( hope he does not read this!!) I guess I should just be happy in him and that he loves me still. The might have beens are hard to let go but the right now is okish and the future maybe better. I have all the hope that one day we will dance again. Thank you all for your support and help it means so much to me. Stacey

Thanks all. I miswrote a bit when I said that we were happy for only 2 months. Amazingly we are still happy, I think I meant we were innocently happy and no thoughts of anything like this happeneing. We were "traditionally" married happy. Does that make sense. In actuality we are happier than many marriages I know. I was just laying down to rest and it hit me again 10 years. God that is a long time and I know I am lucky to have him. I just wanted so much more for us. I keep telling myself that we are lucky to still be in love and still be happy but you know what I don't feel so lucky to be sick and to have it not only stop my life but his as well. He is having a bit of a hard time with that too and it is hard to hear him say that. The ohter day he was talking about how his mom had given him some stuff that was his grandmothers and he said it made him sad because who are we going to give it to. He has to say what he is feeling too I know but oh I don't know. I just want a different life, a non sick life, were our days are spent discussing what fun trip we are going to take to celebrate our 10 years not when the next doctor appointment is. Hopefully one day I will be able to do more and we will be stronger for this but for now I just want to cry. Stacey

Hey all, I have been lurking and reading and am amazed at this community. You are so supportive to newbie's and oldies (hmmm maybe I need to think of a new name for us! ) alike. I have been in a deep hole and not really able to be on much but I always check and chime in when I can. Just need to write to some people who I know understand. Friday is my 10 year Wedding anniversary. 10 years ago I was dancing up a storm at my wedding to the most wonderful man. It was one of the best days ever ( though hot! Who knew it would be 98 degrees in PA and I had a long sleeve dress and the church had no ac!!!) Anyway I was so happy so looking forward to my life getting my degree, teaching and dancing ballet it all seemed in front of me and 2 months later it all fell away ( literally I fainted on front door step) I guess the hardest thing is that life has gone on for everyone and I feel so sad. My husband Jim is still wonderful and has been great through this but I feel as if I have cheated him. I know he loves me and I know I love him but our life was to be so much more. I have hope that it still will be but 10 years and our marriage was happy for 2 months. I guess this is just a prelude to my November 10 year anniversary were I am sure I will post a doozy of a vent! :-) I guess I am just wishing for the might have beens and hating that this happened. I wanted to be married to him more than anything. We dated for 5 years before we got married and I think back to all the fun and all the trips and even just simply going out and spending a day was just so great and now we have mini dates and drives and small things but always with recovery to follow. I don?t know I have been in such a hole and its been hard with my dad still being so sick and I guess it just a passing of the time. I really try and not focus on the time that has gone because it is to much to take but Friday I really can?t get away from it and I realllllly would like to escape!!! We have loved each other so much and still do and I know I am blessed to have that but I really wish for more. Do you know what I mean? I am thankful that I have him and know we get through this but I am sad. Just needed to put that out there, no one really can understand except those who have experienced this. I thank you for just being out there and hearing my cry. Stacey There is so much more I want to say but to be honest I am to tired and feel to awful to type any more. ARGH!

Hi, Not sure if this is the same thing but when I was about 11 I had to get all sorts of heart tests and they determined that I had extra tissue on my heart that balloons and I guess was causing a problem. Ever since then I had to take antibiotics before the dentist and for awhile I thought that what they really saw or heard was my MVP but now I wonder if back then my POTS was all ready showing and I just did not realize it. Hmmm. That was probably around 1980 or 81. I know I had an echo and some stress tests and again the conclusion was extra tissue ballooning but of course whenever I tell a doctor about that today they look at me like I am crazy. Stacey :-)

Who knew you guys would Love Jane Eyre too?????? I have a copy of every movie and my one with Timothy Dalton is about to wear out I have watched it sooooo many times. Just last week I watched the one with Samantha Morton and Cirian Hinds and since you guys won't laugh (like my husband does) then I watched the one with George C Scott which is one of my favorites. We are a strange group!! Anyway welcome we are a knowledgable lot and like to learn too.I have had POTS for 9 years almost 10. Mine started after bronchitis and a virus. Since you have worked with electrophysiologists I imagine we will ask you too. Sorry you are here but glad you found us! Stacey :-)