StaceyYount

You guys really are the greatest.I am crying now but because of the support not the arghhhhhhhhhh! Thank you I KNOW you know how much it means when someone says I hear you and yes it is ok to feel that and I have felt that too. Dayna thank you, I did read and it was one of the reasons I decided to post cause I was feeling so like you but was not sure how to put it either and also did not want to lessen your post (hope that makes sense) but I hear you too. I don't have children so I am sorry I can't help there but I do have a niece and it is hard not to be able to see her and have her come over (and have to cancel when you are suppose to have over because of the anitbiotic reaction and your sister says you tell her, sorry mini vent!) so in a small way I understand how hard that must be for you. But they are resilient little things and I am sure they will be just wonderful especially with you as a mom. Thank you all for your support,I hate when they make you doubt yourself like we all don't do that enough all ready but as you said it is their way of dealing with it. It is juts harder when it is the person who does see you everyday and sees how hard it is for you everyday to have them say this. Well I jsut don't know how to thank you but to say thanks and I am here for any of you if you ever need. I don't feel so alone now and that is a great gift....

Hey, well it is that cycle again where hubby and family are sick of seeing me sick and the, ?well if you would do more you could do more? lectures and suggestions start. I have had this for 10 years so the well if you would just get up is past me and I understand why all this comes but it makes me mad, sad and just plain crazy. And it always seems to come right after a particularly bad spell. I just had a horrible reaction to an antibiotic and was sicker than I have been in awhile. Am finally feeling back to normal horrible and this is still a hole compared to normal bad. heehee And what I want to say to them is, ?now? now you want me to say oh yes you are right if I did do more, or called more or walked more or took this medicine again that I have tried and made me sick it would be so much better because I just went through **** and the thought of doing anything to put me anywhere close to that again is not what I want to do now. Maybe in a week or 2. And sorry I am rambling but hubby went on and on about how if I would just exercise (which I know I need to do and prolly don?t do enough but really can?t do most things) and practiced walking that it would get better. And then of course the mean comments which is just his frustration but they still hurt...the why should I do anyhting I have him to wait on me and that he takes the easy way out by not pushing me and that I need to find the strength inside of me to do more cause my quality of life is what I am going to make it. And all I want to scream is that I AM DOING ALL I CAN TO GET THORUGH THE DAY WITHOUT CURLING UP AND BEING A BABY AND TRYING To SIT UP AND TALK and uhhhhhhhh sorry it is just that now just talking to him takes all most all of the energy I have and then I have to add talking to everyone else and then exercise and going out on the couch to watch tv. To be honest that does not matter to me I would rather watch tv in here and save up for a trip out of the house or a long phone conversation. He says I am waiting for something, a magical something and it is not going to come so I need to make it. IF I haven't been able to make it in 10 years why is it now??? And to be honest right now my hope that I will ever get better is fading and they say what they feel and what they want without really considering what I might be going through...and I think I do the best I can. And maybe I do need to try harder and I will but I wish he had waited a week or 2 more but he didn?t and they didn't and ohhhhh sorry rant rant rant rave...I just feel like screaming ?oh yes I love my life, not being able to get out by myself, not being able to get my own food, being alone all the time, being sick yes this a joyous life. I don't know? not really looking for answers just needed to scream and hear? I hear you, I have felt that before and here is support. I will try more as best I can and we will see where it goes from there. I guess over all what I am saying is that sometimes the times they choose to give the do more lecture is at the times when the thought of having to do more because I feel so bad is just beyond comprehension and not that it would sound good on good days but at least then I could say ok I can try with out screaming (to much) hehe. And why is it all ways days when my hope and spirit are low and why can?t they understand that this is not what I want my life to be and I do wish for a magic pill and I am doing the best I can. Sorry for the long vent and hope that you understand?thanks

Thank you very much for the information!! I did not realize that was what prolotherapy was! Best avoided I agree thank you! I thought the syndrome was interesting and it never hurts to look into new things but ah well nexxxxxxxtttt.

Hey, Jim was looking up stuff for a lecture last night and happened to come across this web page. that discusses Barre-Lieou Syndrome http://www.prolonews.com/barre__prolotherapy_newsletter.htm And I just wondered if anyone had heard of this before, or had been diagnosed or has had treatment for this. The web site is mainly aobut prolotherapy injections which I have no idea and am not sure about... The syndrome is what intrigued us. Talking about the neck and headaches and sympathetic nervous system and lists many of our symptoms. Just close enough that we are going to look more into it but thougth I would share and see if anyone else has heard of this.

Just had to say thanks cause yesterday I fixed the mistakes I had made the other day and so now at least I am not behind! So it was a good crocheting day and you must have sent some good vibes cause I had been struggling with this part for awhile now! I know it is soo hard to put it down when you have finally gotten something and it is soooo fun! But then I realize well if I want to have fun tomorrow too I better stop and rest for a bit. I can't read either and it is one of my favorite favorite favorite things to do. I will attempt it sometimes but find that I don't enjoy it and again if i push then a headache will surely come. But it soooooooooo frustrating!!!!!!

Name: Stacey Yount Birthplace: Baltimore,MD Kids: I great niece Sofia, 1 sponsored child in India Litty Pets: 1 cat Favorite color: Rose Favorite flower: blanket flower Kitchen theme: none really Favorite drink: PG Tips hot tea Last TV show you watched: Gilmore Girls Last movie you rented: Na Tum Janno Na Hum (Bollywood Musical) love them! Favorite food: Chocolate Favorite TV show: Gilmore Girls Red or Pink: Red Favorite ice cream: Cookie Dough Favorite crayon color: Purple Ever bungee jumped? No Eye color: Hazel Hair color: Lovely auburn when dyed, really brown/grey Farthest you have ever been: Caracas Venezuela Siblings: 1 sister Last time you cried: yesterday Favorite game: Cribbage Black or White? Black Rollingstones or The Beatles: Rollingstones Last food you ate: bagel Diamonds or sapphires: diamonds and sapphires! Beach or the mountains: Beach Sweats or jeans: sweats Ever went skinny dipping: no Married more than once: no What book are you reading now: Listening ot HP6 Hobbies: crocheting, watching Bollywood movies Favorite actor: English-Colin Firth Bollywood-Viveik Oberoi Favorite actress: English-to many to name Bollywood- Rani Mukerjee Favorite candy bar: Hersheys Ever toilet papered someones house: no Gatorade: orange Favorite Fruit: Cantalope Men with facial hair? no Steak or lobster: lobster Gold or silver White Gold Just as a FYI Bollywood movie are movies that are made in India (they make more movies than Hollywood) and they are in Hindi with subtitles and they are musicals and wonderful wonderful love stories I am totally totally addicted to them! Netflix as a huge library! They are soooo good!

I just had to share this with all of you guys My husband Jim go this in a fortune cookie and brought it home cause he knew I would like it: The step may only be a tiny one, but trust that it may be the largest one possible for now Cool huh?

I tooo looooooooooooove crocheting and I have now come to realize I have good crochet days and bad crochet days. Sometimes I can crochet for an hour or two and everything is fine but I am tired after that. Sometimes I want to crochet but no way and sometimes I try and corchet and it all turns out wrong and I have to rip out rows and rows. BAD crochet day. That was a few days ago and am still mad I have to re do all these rows on baby sweater I am working on . But I find if I take a day or 2 off then I can come back and have a good day. But the main thing is that while I am crocheting and I start to get that fatigue feeling I stop instead of pushing on through. I find I can do more later or the next day but if I keep pushing than it could be days before I can go back. Why this happens I don't know but just wanted you to know that you can crochet on good crochet days! It has saved me from going crazy from boredom many a day! I love to crochet!

It just makes me crazy that doctors and people who are suppose to help you can look at you look at your chart and then say well you don't have this. Idiots! I so understand your frustration and I am so sorry this happened. This was not the place for you, I was once sent to a rehab place who had no idea what POTS was and they kept trying to tell me I had anorexia nervosa and that I just needed to start eating and get up! I wish they were the place you needed to go but it seems as if they would not have been able to help you because if they don't understand the illness they won't devise a specific plan for you. So though I am sorry you had to go through that with that stupid stupid man I am glad that you found out before you went it was probably not the best place for you to go. As for now what, since i am in that same hole with you I have no advice but to send you many many hugs and much support and love.

Hey Caroyln that is so wonderful. I live in Florida and a trip to SC might not be to bad for me and since the last 2 "specialists" I have seen have told me I need to go see a specialist then he might be one to see. Would you email me his contact information. I would be so grateful I am glad you have foudn a wonderful doctor, that is half the battle huh? Thank you for sharing this and hope you are doing ok today! Stacey :-)

Thanks for the comiseration, I will send him a bill hahahah! The sad thing is this is the doc my former doc (the traitor) reccomended! Well you are right tearose maybe this is the universe saying run away run away! So I will start anew on Monday finding someone It is not enough that we are sick then you have to go through all this frustrating and argggggggghhhhhhhhhhhhhhhh extra stuff! Here to a new and improved primary care!

There is a herb called Valerian that works wonders for me. Now with your meds you will have to make sure it will not interfere but the greatest thing is that you slowly fall into sleep and then stay asleep all night. If you do wake up it is to only roll over and the next day I have no after effects. Ambien gave me halucinations it was really scary, I was on one other one that worked well but sorry am having a total blank on the the name...it started with a t...if I think of it I will come back on sorry!

I am so annoyed and mad and at the stupid doctor. I have been trying to see this new primary care doctor since the first week of January and twice he has rescheduled and so I waited again and today was suppose to be appointment and when we got there they were not there. The door was locked!!! I am so mad cause you all know how hard it is to get appointments and we HAD had to change doctors and now it looks like we will have to again. I checked before we left to make sure today was the day and it was. Mukie is going to call on Monday but i have feeling he wants me to find another doctor. And I really wanted to see about my sinus and extra tiredness and well I sort need a primary care it is kind of importatnt and oh you guys don't really need to hear this but arhgggggggggghhhhhhhhhhhhhh! I just need to vent! Monday we will have to find someone knew. I am sooooooo frustrated!

Hey, Thank you all so much. He made it through surgery just fine and what they thought might be cancer that had spread is a fungal infection so they got all the cancer and now only have to treat the fungus. Which is the best news of all. He will be in hospital about a week and then will come home. Thank goodness! My new PCP cancelled my appointment again. SO I am not sure if he will be my new PCP. I had an appointment scheduled on Jan 3 he rescheduled unitl today and this morning they called and rescheduled until Feb 24th. He has hurt his back and I underatnd the need for rescheduling but why so long... Well hopefully I can see the New neuro on Tuesday. Again I thank you sooooooooo much for all your thoughts and prayers it really helped me to know you were all out there.

Thank you all soooooooooooooooooooooo much! It means the world to me to know you are out there and thinking of me and him! I appreciate all the support and send hugs to all of you! Will let you know how everything turns out! Wishing you some good days!

Just found out my father in law has to get lung surgery (cancer) on Thursday. So I am asking for prayers or healing thoughts from all my friends. His name is Dan and he is a wonderful man. He will be ok but it is very scary and sad. So think good thoughts for him on thursday and i pray that everything goes well and he is ok. I also have some doctors appointments coming up new PCP on Friday and new Neuro for headaches next tuesday so a few good thoughts for that too would be good. Sorry I have not been on much will try and come on after all my doctors and give some support back.. Thanks... Stacey

You know I should not be amazed when something I have been dealing with like horrible muscle spams ends up to be part of this too and that others get it too.But each time i come across a post and see that others are dealing with things it just makes me shake my head. I have been having a terrible time with this and especially in the last week were my mid back went into spasm then it moved up my back to my neck. So again me too me too and sorry you guys have this too. I am not on Florinef so I think my potassium is ok. It probably is jsut another POTS thing aren't we lucky?

whoo hoo I just made it! Happy Birthday Happy Birthday! Hope you have a great year to come! Thinking of you!

I think Julie was tested for mastoiditis and though I can't get a doctor to test me there such a thing and it is behind the ear. There are "sinuses" sort-of behind your ear that can get infected especially when a sinus infection has gone on to long. Might be a thing to ask your doctor about. I too get that and when I get my headaches they can be on one side and soemtimes my muscles on one side will get really sore and can spasm there. So me too me too!

Corina I will sing harmony ok??? :-) Happy Belated birthday Nina! Hope this year is a wonderful one for you filled with love happiness and many many good days!

Thanks Corina, Jim is going to go with me and hopefully they will let him stay with me too! He is going to talk to them and make sure they understand so maybe they won't give me too much of the med. Thanks for the information! I am a bit nervous but we will see. But hey that maybe good becuase my hr might be even faster. hahahahaha! Hope you are ok today!! Stacey :-)

HI, A cardiologist who had treated POTS patients once said that I have vacumn headaches from the blood pooling. Now I have looked that up and have not found a lot of information but he said that it was a very big contributor to why my headaches get so bad after to much activity. This is not much help but I did want to say me too me too!

Thank you for the information and I will ask. My husband will be there too and said he would help me explain and I am hoping that my hr is all ready high enough or if they just have me stand up then there you go. I am not expecting to find much but guess it is better to be safe than sorry huh? Thanks again I feel more ok with it now! Stacey :-)

Hey thanks, I am not doing the one with the treadmill. The one i am having is a Dobutamine Stress Echo. Dobutamine is a vasoconstirctor according to my paper and they use the medicine to get your hr up instead of the walking. I can't do the walking so they are going to do it this way. Has anyone had this test? But thanks I will ask for some iv fluids after and Jim is going with me so that will help. It is always better when someone else explains your illness too because so many they have not believed me when I was alone. I don't think anything new is wrong but I guess it is better to get it checked out. I kind of wish they would find something new (not bad) but new like and infection or somehting becuase if it is just the POTS in a worse spell I have to wait until it goes I guess. But I will see a cardiologist and maybe he will have some new fun medicine to try! Thank again, Stacey :-)

Hey all, Well at my last visit with the traitor he was a bit worried because my hr was so high and the fact that I am having so much chest pain and it is new. So wednesday I am scheduled for a Stress echo. I have read up on it and it scares me because from what i understand they give you a medicene that will acclerate your hr so they can do the test without you having to walk on the treadmill. Walking on the treadmill si not possible but I am worried about the test. I guess if I tell them to go slow it might not take to much of the med to get my hr were they want it. But imagine a huge crash is going to come after. Anyway has any one had this test? Any suggestions on how to prepare and what to expect would be appreciated. On a happier note, the bear that I had crocheted for him he gave to his daughter who has cerebal palsy. When I saw him on Wednesday he said that she sleeps with it every night and the other day they had to go to a doctor who she thought was scary and she took the bear with her! That made me happier than anything I had heard in a long time! Ok sorry so any help or suggestions I am a little scared. Stacey :-)