StaceyYount

Hey, I am so so so so so so so sorry you had to go through that. It happened to me too. My story the short version was I was seeing this idiot gastroenterologist. Actually told my husband who is an A&P professor that he got a B in A&P... He let me get down to 90 lbs before thinking oh maybe we should send her somewhere. Went to Shands got the dysmotility dx. I was placed on a PICC line. Down to 84 at this point When I went to see this dummy he told me I was his first PICC line. That should have clued us in. Anyway the line got infected was removed from 1 arm and placed in the other but improperly. The line was to long and was sucked in to my heart. The x-ray actually showed it curled around on my atrium (right word???). Anyway the idiot doctor said that I had pushed the line in and that I needed to be transferred to a facility so they could watch me. Tried to to convince my other doctors. The psychiatrist came in and said to me why don't you just leave these doctors alone. I was so upset I asked my primary why he said that. It was not until we got my hospital notes did we find out that the gastro guy was trying to convince other docs I had Munchausen's. Fortunately my primary knew better and stopped him. But it is still in my records. I think when they don't know they shift blame. I am sorry and I understand your frustration!!! Get thee to a new doctor. And don't let this make yourself doubt you or you illness you know what you feel and how sick you are others know just remember that and keep searching for a doctor who does understand. You are not alone. Keep fighting and keep searching! Stacey :-)

Thank you for posting this. I was just wondering how our dancing light was doing! GO emily! We can't wait to have you back. Stacey :-)

HEEEEEEEEEEY Gena! Just caling to you down in your hole! :-) I am sorry you are having such a bad time now and wish I could send you a rope to help you out. Just know I am here and am thinking about you. Vent away it helps! Sending you hugs and strength! Stacey :-)

Thanks I understand a bit more but one question. One doctor said that I had the hyperadregenric form of POTS but I don't think I have ever had my serum catecholamine levels/norepinepherine levels ever taken while I was standing, I did have a 24 urine catecholimine test but I think that is different yes?. I think I have a crossover of both but I guess my question is should I have those tested to see if I do have that form becuase maybe it would be a way for me to be treated wiht something as of right now I am on no meds to treat this due to intolerence. Hope this makes since my brain is not working! Stacey

The extra suggestion cracked me up How about an artists model My husband suggested that I come to his A and P class to be a live model to point out muscles etc. or for use in his practicals HAHAHAHA! He says I have the anatomical position down pat! Funny guy! Stacey :-)

How about a steel worker who has to stand at the top of the building and rivet or something. :-) UPS person in Florida at christmas??? :-) A reporter waiting outside Martha Stewarts?? LOL Love your dating thing! Needed a smile thanks for this! Stacey :-)

Mouses are suppose to be agile don't you know??? LOL! Want me to crochet you some corners for your furniture??? :-) Sorry this happened and hope you are feeling better today! Sending you a smile a hug and hope you get some sleep! Stacey :-)

Have you been checked for vasculitis? That can happen with that but saying that I bruise extremely easily and lately more than usual. Had a accupuncture needle cause a bruise the size of a plum(having trouble figuring out a size to say ) I also have spider veins and broken blood vessels in my face so it maybe a part of POTS. But maybe something to ask your doctor to check into the vasculitis I mean. Stacey :-)

Some quotes I found that I thought I would share with you all and to thank you for being there. Stacey :-) A friend loves at all times..." The Bible - Proverbs 17:17 "Friendship is the only cement that will ever hold the world together" -Woodrow Wilson "Treat your friends as you do your pictures, and place them in their best light." ~ Jennie Jerome Churchill "... When you ask God for a gift, Be thankful if he sends, Not diamonds, pearls or riches, but the love of real true friends." ~Helen Steiner Rice "Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival." ~C.S. Lewis "In the End, we will remember not the words of our enemies, but the silence of our friends." ~ Martin Luther King Jr. "Friendship doubles your joys, and divides your sorrows." ~ author unknown "Friendship without self - interest is one of the rare and beautiful things of life." ~ James F. Byrnes "Give me one friend, just one, who meets The needs of all my varying moods." ~ Esther M. Clark "The greatest good you can do for another is not just to share your riches but to reveal to him his own." ~ Benjamin Disraeli "The only way to have a friend is to be one." ~ Ralph Waldo Emerson "The glory of friendship is not the outstretched hand, nor the kindly smile nor the joy of companionship; it is the spiritual inspiration that comes to one when he discovers that someone else believes in him and is willing to trust him." ~ Ralph Waldo Emerson "Friendship is always a sweet responsibility, never an opportunity." ~ Kahlil Gibran "Friendship is neither a formality nor a mode: it is rather a life." ~ David Grayson "If a man does not make new acquaintances as he advances through life, he will soon find himself left alone; one should keep his friendships in constant repair." ~ Samuel Johnson "You cannot shake hands with a clenched fist." ~ Golda Meir "Friendship is one mind in two bodies." ~ Mencius "The best way to keep your friends is not to give them away." ~ Wilson Mizner "Think where man's glory most begins and ends, And say my glory was I had such friends." ~ William Butler Yeats "Stay is a charming word in a friend's vocabulary." ~ Louisa May Alcott "Celebrate the happiness that friends are always giving, make every day a holiday and celebrate just living!" ~ Amanda Bradley "If we would build on a sure foundation in friendship, we must love friends for their sake rather than for our own." ~ Charlotte Bronte "A true friend is someone who thinks that you are a good egg even though he knows that you are slightly cracked." ~ Bernard Meltzer "A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words." ~ unknown "Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light." ~ Albert Schweitzer "You can make more friends in two months by becoming interested in other people than you can in two years by trying to get other people interested in you." ~ Dale Carnegie "A friend is a gift you give yourself." ~ Robert Louis Stevenson "Some people come into our lives and quickly go. Some people move our souls to dance. They awaken us to new understanding with the passing whisper of their wisdom. Some people make the sky more beautiful to gaze upon. They stay in our lives for awhile, leave footprints on our hearts, and we are never ever the same." ~ Flavia Weedn All quotes taken from http://www.gagirl.com/friends/friends2.html

I am constantly amazed at the support I find here. I am crying because I am so touched. Thank you. You know the sad thing is that since I know how hard it is for people to understand what we deal with it is not something that I really go into. I just wanted to connect with an old friend see how they were bring new people into my world but as soon as you mention illness many shut down. It is so sad because it hurts me and I am really not asking for that much. But as you have said their lives are different and I will let them live them and hope. I have 2 friends from high school that I am in contact with and they are great. Maybe I need to spend some extra talking to them! I guess I will be content with the friends I do have, make sure that I never do that to anyone I know and keep you all in my prayers and in my heart. You all give me strength and I guess the understanding that it is not me that is at fault it is them. But it is a hard thing to realize when you put yourself out there. But I will continue basically because I know no way else. But it is so wonderful to know that you guys are out there and understand. Stacey

Hey, We have covered this topic before but what do you do when you reach out to old friends and then you get nothing back? Well let me start at the beginning. In the last year I have contacted 2 old friends. One from about 11 years ago and one from just after high school. At first they were both very happy to hear from me! The first girl knew me before and after I got sick but then we lost touch. She emailed about 6 months ago and I emailed back just saying that I was doing ok but still ill, among other things of course asking about the baby etc. A month later I got an email with 60 pictures of her daughter and then the next month the same thing. No response to my email at all. I guess she just wanted to show off her baby ( who wouldn?t I know) but no I am sorry your still ill no questions about my life or anything. But oh well. So just about 2 weeks ago I happened upon the email of my other old friend. Emailed hey is this you. It was and she said I am so happy to hear from you write soon etc. So being careful I just told her a little of my life and said that I stay at home because of some health problems but that that was a long story. Haven?t heard back from her either. I guess I should not be surprised because geez even some of my cousins and aunts have pulled back since I have been ill and don?t respond to emails letters etc. The sad thing is that I don?t want to talk about my illness with them. I just wanted to open my world up a little and thought I would be safe with old friends. I guess not. I am finding that people are very strange and that things I would never think of doing people do all the time. If an old friend wrote me and said that she had been ill for 10 years I would at least write her and say I am so sorry if nothing else. But that?s me. As you know my dad is been very ill and my aunt was in Miami over a long weekend drove right by the exit were he is in the rehab place and did not stop to see him. How??? Do I stop reaching out? I don?t know. Have you guys experienced this any advice? I am just thankful I have you and that my world got opened as much as it did when I started reading an posting on this site. Thank God for that! So thanks for being true friends even though we have never met! Stacey :-)

Hey, I get that. Not that often but when it does it is like whoa! It seems to happen more when I am dehydrated (not technically but you know just haven't been drinking enough). But know exactly the feeling you describe, one doctor said it was my MVP acting up but I am not sure. Just wanted you to know you are not alone! Stacey :-)

I am sending you strength and my thoughts and prayers are with you and your family. Stacey

Oh em! Thanks for posting this and I am sending hugs and love to emily! Is it still ok to send cards to you Michelle to forward on to her? Stacey

Hey, I get this and so does my husband and he is not a potsie . It happens when we have a tight muscle just under the shoulder blade near the spine. Now the muscle does not hurt that much and I really don't notice the tightness but it gives me a shock of pain through to the front of my chest. The pain is actually on my chest and it does not last long. If you have someone press around the edge of your shoulder blade you might find the knot, This may not be your problem but wanted you to know that we both get it and it is annoying and scary until you figure out what it is. I hope that this is what it is for you. Take care, Stacey :-)

You guys have made me smile and I needed it. Sad that we have to laugh at this but glad we can anyway... I have 2 stories I was in a hospital in Orlando and getting a colonoscopy. I guess when I came out of the anesthesia I started telling all these jokes. I guess I cracked the nurses up because later they came in and asked me if I remembered and I said no. Still don't remember the jokes but I guess they were funny. Maybe I am a closet or floor comedienne too! LOL The second is that once I went to my doctor for a demerol/phenergan injection for a headache and we got this brilliant idea that when I got home before I went to sleep I would take a shower. Well all I remember is saying to my husband I am going to faint. Faint I did , ambulances came ... Anyway the funny part is that every time we go to the doctor now and he is going to give me a injection he says ?now no showers now, it is bad form for a patient to leave your office and faint!? Stacey :-)

Hey, I got married in August of 1995, in October I got bronchitis and in November I fainted at our front door. I have been ill and mostly bed and home bound ever since. This is our 10 year anniversary this year so I have been thinking a lot on this. My husband is wonderful but it has been very very hard. When I was at my worst we were so far away emotionally it was scary. But we came out of that and out of my worst.The thing is we still love each other and to us that is so special. We still have bad periods but the thing is we love being together and if it means adjusting that to watching a movie holding hands in bed instead of at the theatre we do that. Though it does drive him crazy to always be watching TV in here. If it means he goes off every August for vacation then he goes, if we need to talk (which I admit we don't do enough of regarding how this illness effects or affects our lives) then we do. Anyway I just wanted to let you know that there are good guys out there. And I think it is great that you told him to go off and do things even when you don't feel like it. That is one of the main things I do for Jim he needs to still live but he is so cute because he says I ruined being alone for him. He says it is not as fun as you think to do things because I want to share them with you. He is such a keeper. Anyway I think you have done so well with helping him deal with this and it is up to him. Don't let this make you feel less. We have enough of that to deal with. The good ones are out there and you will find him. I just wanted to say you are not alone,to all of us we are not alone, you were doing well to help him and you should be proud of yourself for that, the rest of it is up to him. Stacey :-)

HI, I always wondered if this was a symptom. My answers are 1. B 2.B 3.A and I, My traditional chinese medicine doctor says that the spleen or maybe my liver (??) is responsible for hair and skin among other things in their theroies of the body. And since one of my main problems is a spleen liver imbalance it made since to her that my hair was falling out. I don't inderstand the theroy but that is what she says. 4. D. Traditional Chinese Medicine docotor who has a PhD in oriental medicine and treats with acupuncture and chinese herb combinations. I am on no meds right now and still my bathroom floor gets covered, so do my clothes and when I take a shower and put conditioner in I get hair all over my hands. My hair use to be very thick and now it is thin. It is also a lot drier! And very grey though I am only 37 I have been getting grey since I was 18 and now am almost totally grey. I also think my hair is growing a lot slower. My hair use to grow out very fast but now it seems as if it does not go much past my shoulders. I haven't had a haircut in months and it has not gotten that much longer. Intersting.. Stacey :-)

Hi Caitlin, I was hit with POTS in 1995, post viral like you, after a bout of bronchitis followed by a virus. I was fine eating until 1996, then I started not being able to eat. I went from 136 lbs to 84 lbs. They did not find my small bowell dysmotility or gastroporesis until I was down to the 84 lbs. I placed on a picc line for TPN (total parietal nutrition). And I went back to 114 when they stopped the picc line because it got infected. Anyway slowly I was able to eat eonough to maintain and now all though I get a lot of nausea I got better enough to be able to eat enough to maintain. So there is hope that you will get beter with this. I am still homebound and mostly bedbound because of the POTS but the eating did get better. It is a very long story how all that happened but I guess I wanted you to know you were not alone. Stacey :-)

You know you guys are really the greatest! You all brought tears to my eyes but it is becuase I know you are there and I know how you struggle and that you help me is just the greatest. I thank you from the bottom of my heart. I will keep you posted. I think it is probably a super infection from the other infection and the strong anti biotics. Mom went in there with that and the doctor said to her how do you know about that and she said I have a biologist for a son-in-law and a smart daughter! Anyway off to try and sleep now. You guys give me strength to fight on and it means so much Thank you! Stacey

Hey, Well she had to take him back again tonight. He just got out of the rehab place on Monday. They never tested if the infection was truly gone. He got home so weak he could barely stand. Then last night he spiked another fever and got diarhea(sp?). And fell again. She called his doctor and the receptionist told her that everyone was to busy. So Mom called the paramedics and he is back in the er. Do any doctors or hospitals have any idea how to take care of anybody. I am so sad and so frustrated and so tired. On top of it Jim has kidney stones, I crashed way way down from the last week of my dad being in the hospital and now he is back. I just needed to reach out to you guys. This is so hard and I am so tired and so sick and you know selfish as it may seem I hurt so much and this is really getting to be to much for me. I will rally but how do you cope with your own illness and pain adn then try to be there for your wonderful husband and then try and be there for your mohter who has just been through **** and how do you take how awful it is for my father to have to go through all this. And since everyone is so consumed with all this and their own lives you guys are the ones I have to to cry to so forgive this but i needed a big yell. And maybe some cyberhugs! Stacey

Hey all, Here is my two cents. I am not sure exact;y what type of POTS I have but it has been mentioned the hyperadr???(sp?) sorry.Also a post viral nueropathy was what Grubb thought. Brain Fog is very bad today sorry. Anyway They tried me on every SSRI known to man for 2 years. I kept telling them i feel worse but they didn't listen. Finally after long struggles they took me off it by accident and do you know my energy level shot up at least 50 percent. I was no longer lying in a fetal postion in bed unable to move. So if a doctor even hints at a ssri I say NO! But how could i have known this except that one day at a hospital they did not have a record of me taking it so they did not give it to me. Pretty wicked withdrawal but since I did not know that that was what it was I thought it was jsut POTS. I will never take a SSRi again. tearose you are so right the information that we could give the doctors would be amazing if they would jsut listen. It is strange how each of us is different yet the same. Stacey

Hey, I know I am not Merrill but since I am about to under go 2 crowns next month and then 2 more the next month I thought I would answer too. The carbocaine did nto effect me but the only thing is that it wears off faster than the other stuff. So sometimes I had to get an extra injection. There is a new thing that they use for numbing that still has the epinephrine but they have taken out the part that makes your heart race. I have tried it twice. The first time it made me really shaky but the second time it was ok.I am sorry I can't m the name of that stuff maybe someone else knows. But overall I am happier with the one without the epi. One thing that really helps me make it through is to constantly try and relax. I actually remind myself over and over relax your hands elax your neck etc.. and I am always tense when I do that and it does seem to help. Hope I helped, Stacey :-)

Hey, Why is it that when you finally decide to investigate something and you go through all these tests and they show nothing and then you are stuck with the problem and no answers!!!! ARGH!!!!!!So then you wait and it does not go away and you go back and the doctor says oh you still have this well lets try this and still no answers. And then you are stuck! I'm little frustrated sorry! I have had a very bad cough since about last year. It comes and goes mainly comes and is always worse when I laugh or exert or take a deep breath. It is always bad in the morning sometimes I cough so much I gag. The coughing makes me very very dizzy. Lately it has been that I have been getting out of breath talking and I notice the sob happening when I stand to long. It use to happen when I stood but it has gotten worse were even my husband notices that I am out of breath. Have tried allergy meds and my pulmonary function test came back fine. (which is good I know but I wanted to show a little something so they could give me something so it would go away.) When am I going to learn that most everything we have is not going to show up on most tests and that there is not 1 magic pill to take it all away. I keep hoping though and sometimes that gets me in trouble. Meaning that instead just waiting and seeing I get excited and then crushed. But that is not my question. I know there have been threads about this but I just wondered if you would let me know if and how you experience this and if you have found any help. I am going to see the Rhuemtologist on the 17th and maybe she will have a something to say or a way to look at it. The sed rate and the rash and maybe the worsening of the cough and SOB will relate in some way. We will see. Anyway if you have this and can give me some things to try or to investigate I would appreciate it. All my doctor said was the test was fine no recommendations on what to do next so I will have to find them on my own. Dad is not good but not bad so I am having to deal with that too. But hopefully he will get good soon!! Thanks again, Stacey (me coughing )LOL

Okay I may be reaching here a bit but as I was researching this a bit I came across that rhuematic fever can occur after Scarlett fever. I had scarlett fever when I was about 13 or 14. Also around that time was when they found my MVP but they called it extra tissue balloning on my heart. I can't remeber if that was before or after the Scarlett fever. Now does anyone know if I coud have developed the rhuematic fever and never really known until this POTS started?? If anyone has run across anything let me know. Thanks. I am always trying to find explanations and since doctors don't seem to relate one thing to another unless it is in their field you have to kind of point the way. Anyway I am going to see a rhuemtologist and we will see. The petachiea rash is what has me thinking the vasculitis and with the sed rate. But we will see what she says. I did have an ANA and it was negative. Thanks for all the info. Stacey :-)