DancingLight

p.s. amy...i loved your post title! if we don't add a little humor...it's just all downhill you know? especially on the issues of poop and pee! that's my feeling at least!

WOOHOO!!!!! YEAH! A MILLION THANKS TO YOU ALL WHO MADE THIS HAPPEN! emily

amy, it is really weird you posted today b/c i was just thinking...where is calypso? i hope she is okay? and almost posted a topic to that effect! and then, i log on and voila, there was a post from you! anyway, i really think from your discussions in the past it would be worth it to once and for all rule celiac in or out...it can come on in the way you desribe from what i understand and cause the symptoms you are describing. load up on gluten! i am so sick of docs being so dismissive! i still haven't figured out the root of my probs either and don't know if i should chalk them up to POTS either. another thing to try on your own, which may or may not help...is an elimination diet to rule out if foods are aggravating your symptoms. if i 'cheat' on my diet, esp with gluten or dairy...yup, the gas is bad! it takes a while to see results with an elimination diet, but it was more than 100% worth it for me. i always believe that we, especially as young women, who are so often dismissed by doctors, should keep pursuing things until we feel that we are being treated with respect and dignity. it took me 6 years to find a POTS doc. i was accused of doctor hopping and the usual stuff we have all been through, but i know i was right in the end, and we must follow that! from all of your weight loss and stuff, i don't think you should dismiss this! so, that's my story, and i'm stickin' to it! off to bed. keep us posted. emily

julie, i hear you on needing a break! can't we just have 'vacations' from being sick sometimes???? i don't know anything about what is going on or what any of the tests mean... but wanted to say...remember to BREATHE! it is easy to jump ahead and jump to conclusions...and i am the queen of that. try to stay in the moment and not jump ahead to the 'what ifs' too much...easier said than done. but i am saying this affectionately, k? not in a harsh way... by the way...did you read in my post the other day about taking ambien in the morning? i thought about you b/c even WITH my pill holders i messed up! oh well, i got sleep which i sure need! b/c i'm not getting it these past few nights. you know, those nights of staring at the ceiling listening to the BBC world news? well, i'm up on the news at least! keep us posted k? sending good thoughts... emily

Mary, I echo what everyone else has said... My heart is aching for you and Marissa... I cannot imagine having a child so little and watching her suffer...these are the times that I have my "God, where are you?" moments... Please keep us updated and know you are in our thoughts. Emily

mindy, i was worrying about you too as it seemed 'unlike you' to not follow up on the angels. i thought maybe you weren't feeling well. if anyone will understand needing to put off a project b/c of not feeling well...it's us! so, please do not feel guilty or that you have let us down. we will simply look forward to the angels when you are ready to do them. we will buy them knowing you created them at a time when you were able to enjoy it, rather than being under stress. i cannot tell you how often my intentions are good, but i am unable to follow through! i WANT to do all of these things, but my energy peters out! especially in the correspondence dep't. this time of year is definitely hard. the weather here today was so windy it was crazy! do you live near the cleveland clinic or will you have to travel far? thankfully, you are under good care and have a doctor who is taking you very seriously. that is half the battle. i had a down day today too...it is so hard when you have a little more energy and get to do more...the relapses seem even harder! so, i just wanted to say...you are not alone in this and having down days... it's hard not to beat ourselves up...i do it all of the time!...for having 'bad days'...but, i hope you will be gentle on yourself and dye your hair if that will cheer you up! later alligator! thanks for updating us on you... emily

p.s. who wins the cookie? and what kind is it?

merrill, you made me laugh out loud! i guess i do say good grief a lot! AND...guess what? i have those belleruth naperstak cds too! i have several of hers b/c i have never found any better than hers! i can't believe there is someone else out there who loves them too as much as i do. she has the funniest name. i feel a nap coming on too...the crash hit me now and i feel awful...so at least we can be two peas in a pod today! anyway it is windy and dreary here anyway. a good day to stay inside and rest. glad you made lots of good calls...it always feels good when you actually get led in the RIGHT direction for all of your effort! you know? i hate it when i call the drs. and get no where. i really hope tonight is restful with no more episodes. thanks for keeping us posted. nap for me now. emily

steph, i heard that report on NPR yesterday...and i'm saying to my mom...look what i've done to you! i'm aging you b/c you are my caregiver! maybe people will take stress more seriously now that there is evidence of actual physical damage to the cells...you know? we are so dismissive in society about stress and it is out of control! thanks for posting and keeping us all on our toes! emily

merrill, i am very worried about you! but, glad that your sense of humor is still intact! i won't win a cookie though , b/c i don't have any answers for you! just that, this incident won't let you putz any longer on the stenosis stuff...funny how the body lets us know sooner than we would prefer! just when i think i am on top of things, a new thing turns up. that is very, very scarey what happened and i would have been scared too. i am glad that you are getting in touch with docs today. please, please, keep us posted on what you find out... b/c i have the jewish worry gene you know... emily

JLB, ugh, i hate that feeling of knowing that you are sliding/collapsing. i can often feel it coming on too...and will maybe even say to my therapist or someone, 'i can feel a crash coming on.' i wish i was better about pacing myself before it hits, but sometimes i push through things b/c i want to do them so badly (i.e. the holidays and visiting and the reunion). maybe you since you feel the crash coming on and you got lots of 'motherly' advice from us folks here...you will take heed and gulp down the gatorade and watch some good TV or movies! easier said than done when you don't have someone to take care of you and you have the demands of every day life to take care of! aaargh! i really think they need like some sort of respite care for us...you know, so that we could recup and not have to worry about cooking, cleaning, groceries....okay, so i'm dreaming. i want that for the caregivers too! well, i've gotta go hit the hay too as the reunion exertion hit me hard all of the sudden today. what is up with that? aaaarrrrgh! hang on JLB. there is just no way around it, crashes stink. but, you will come out of it. and while you're in the potshole...vent to us! we're here. emily

veryblue, i am sorry to go off-topic here. but i have been reading your posts...and this one got my ire a bit. you have come here for help and support...and i think you have been given a lot of it. yet, you just said you don't believe in POTS? that it is just a waste-basket diagnosis? i am sorry, but that is not true. POTS is real, and many of us are very, very sick from this. i haven't responded to some of your other comments, but this one, i do not feel it is fair for you to say that to those of us who are sick with this. POTS is a real illness...and we here, are trying to educate and spread the word about this misunderstood illness. b/c something is a 'syndrome' does not make it 'not real', it just means that it is a 'cluster of symptoms'. many of us got sick as quickly or suddenly as you did and were very active and high-functioning before. we had or continue to have the same goals in life as you do. you say that you do not understand how you could get sick so fast? think about how fast the flu can come on? or food poisoning? FAST! it is the same with many of us with POTS. i had the 'world before me' when i got sick at age 22...and i am not LESS of a person b/c i of this illness. life is just different. i find meaning in different ways. yes, i still want all the other stuff i can't do, but i find contentment and meaning in what i can do. i know that you are frustrated from the lack of support you are receiving and not feeling 'up to par'. it is not my intention to minimize that. i don't wish illness on anyone...young or older. please possibly seek some counseling or professional help to help you deal with the emotions you are feeling. i know you are really struggling. this post may get edited or deleted. i am not trying to be mean or rude. but i felt that i must speak up. please, veryblue, remember that disability does not discriminate. none of us here 'chose' to be sick or 'chose' not to get better. emily

goldiedance... i am sorry to post this on the board and take up a whole topic... but i cannot get email to go through to you...and i wanted you to know that i wasn't ignoring your email! it keeps getting sent back to me...so if you are reading this...can you email me again or something? i am not sure what is going on... hmmm.....i am always having a computer problem...has anyone noticed that? good grief! emily

you all rock! thank you so much for supporting me in the excitement i feel...and really 'getting' what a HUGE deal this is! i am smiling from ear to ear. i know some of you are having a really crummy time right now...and i appreciate you being able to still feel joy for me! but, i think you also know that i have spent the majority of my 6 1/2 years feeling crummy...so i didn't post to 'rub this in' to anyone's face! i hope you know that! i also know how fleeting these 'good days' and 'good moments' can be, but, as corina said, these moments are what sustain us from day to day...especially the bad days! also, it was helpful for me to hear that others of you get the 'shakes' from the overstimulation. that was definitely what it was. i was glad that it didn't 'stick'. i have had that happen and then had it last for the whole night or days without being able to sleep or stop it. my fear about the reunion was more the after-effects than the reunion itself, b/c i knew that the adrenaline would kick in! although, i probably used it all up now! he-he. there was so much stimulation...five conversations at one time, plus the worst part was the DJ and having to yell to talk. i find that so exhausting. i am doing so much better than i could have expected. and julie, you are right, i prayed and prayed for a 'good day' that day. b/c it changes so much from day to day! on thanksgiving day we had a visitor and i felt lousy, and then the next day better. so unpredictable. i am mostly just tired and not super-symptomatic if i take it easy...like, i didn't get up until noon today and need a nap now! oh well! i am used to that. i allowed for some 'down time'...so what will be will be. thank you again! hugs and better days for ALL OF YOU!!! later alligators! time for that nap! emily

merrill, yup, you conveyed your gratitude just fine! how was your big day? did you end up celebrating? or did you just hit the hay early since you are feeling a bit under the weather? hey, sometimes, hitting the hay early is a treat in and of itself! won't ramble here, as i already did that in the email to you! so, you've had enough of me for one day! take care alligator! do you feel older today? okay, okay, sorry, couldn't resist! emily

hello all!!! i just wanted to share my excitement.... as most of you know i am pretty much homebound and get symptomatic so quickly... well, i was DETERMINED no matter what to go to my ten year high school reunion. i have actually been doing a tad bit better these days and surprised myself with how well i did. i didn't even crash quite as badly as i thought i would. for those of you who have struggled to get through each day or even leave the house....i know you can understand the absolute sense of triumph i feel over being able to do this! i am just so excited. i felt 'normal' for jsut a little while. these moments have been so few and far between for me over the past 6 and 1/2 years. in fact, this may be the biggest outing for me! i did stay too long probably b/c i had the shakes for the last hour...does anyone else get this? then, when i got home my bp was actually high for me...weird. i guess it was the fight or flight of keeping me from passing out? how do you stop that after it starts? like, for the last hour i was there i was shaking and i knew it was b/c i was over-doing it...does anyone else get this way? i was frozen too! i don't know... but i DO know...that i went, and i did it! i was so proud of myself...b/c i hate situations in which i have to answer the 'what do you do?' question a hundred times over. you know? but i found that most people were great about it and i was able to sit the whole time and people came to me. i felt loved! i saw so many folks and was so glad that i went. i even looked good i think! one thing that is hard...is that i hate telling people that i have health problems and sometimes feel embarrassed or ashamed. but, i also realize, that if i do not show my face and speak out...i just perpetuate myths about invisible chronic illness. so, i am going to put a face to this. so, i can't avoid these situtations if i want to make a difference (however small it may be) in this life i have been given... so, i just watned to share my joy. the joy that i felt well enough to go. that i felt well enough to enjoy it. that i didn't crash terribly afterwards (the crash after is always the worst for me). that people were loving and kind. that i re-connected with folks i had lost touch with. that my best friend is amazing and served as my protector for the evening...even going to the bar for me to get a drink (water, of course) and driving and everything. she really made it so that i could feel safe there. thanks for letting me share! sorry if i bored you! well, need to crash now! i think this week will be all about 'recuperating' from the whole thing! still, it was soooo worth it. wow! later alligators! emily

no way jose on hot showers or baths! i always take my bath or shower at night so that i can put hose on before getting out of bed in the morning. and never, ever, hot. emily

hello miss cranky, hope you get un-cranky soon! you know, those drugs ...i personally like my speed. he-he. ugh though on the herniated disks....good grief! sometimes i wonder why we humans ever decided to walk on two legs instead of four! we would all be a lot better off with our backs! sorry, this isn't funny, but it needed a little humor...that is my coping strategy. let us know if you get some good drugs. emily

blackwolf, thank you for reporting back to us and letting us know what happened. i just wanted to say...be prepared and gentle on yourself if you find that after this big weight is lifted you crash a little! that is what always happens to me....i feel good and then, the body says, ooohhh, i can relax now and you need to give yourself some time to recuperate! i am not saying that to be negative...i am saying that so that you are gentle on yourself after all of this stress....i cannot even imagine. emily

okay, so i know that thanksgiving is over and all... BUT...i couldn't log on for several days b/c something got messed up (but yeah, michelle did detective work and fixed it...so i am back!) i was going nuts not being able to log on and respond... so, steph...i was going to tell you to come on over and have beef brisket with us. but now it is all in my tummy. yum, yum. and goldiedance....well, you are right...it was only cooking for one day. but it seemed like longer b/c it smelled so good. so, anyway, hope you all had good turkey days and relaxed. and thank you to the 'teacher-types' who helped out corina! i am terrible at explaining things like that. emily

i am an only child...but my mom felt FABULOUS during her pregnancy! she always says how she has never felt as good as when she was pregnant! i would say that i am the 'compromise'...at first my mom didn't want any kids and my dad wanted a lot! so, they had me and then my mom said, no more and had her tubes tied. i guess i was handful enough! he-he. . no, my mom loves me lots. no worries. but, she was very career oriented as was my dad and he didn't help much...i think that if he had been a better 'helper' she might have had more. my dad was one of 16 children! and his family seems to have no problem populating the world, as i have 40 cousins and there are over 40 great-grandkids now! and most are healthy. no other folks with POTS. but my mom's side...she only has one brother. and my grandmother, her brother and her ALL had/have cervical and spinal stenosis. so maybe the POTS is from that side? hmmmm... anyway, always stinks when the docs do family history and you don't have any siblings to compare yourself to! but, otherwise, being an only child was just fine. i have my dog...he's enough of a sibling! later alligators! emily

YEAH! IT DOES LOOK SO DIFFERENT, BUT THE NEW FEATURES ARE GREAT TOO... PRETTY SOON WE'LL FORGET WHAT IT 'USED TO' LOOK LIKE... AND MICHELLE, THANKS FOR HELPING ME GET BACK ON THE SITE...IT FELT SO WEIRD NOT TO BE ABLE TO POST! I AM GLAD TO BE BACK! THANKS FOR YOU HARD WORK! I REALLY CAN'T IMAGINE RUNNING THIS WHOLE THING...I REALLY ADMIRE YOU FOR IT! EMILY

HAPPY BIRTHDAY MERRILL!!!!!! :) HOW COME YOUR BDAY IS LISTED AS NOV. 11 IN YOUR PROFILE GOOFBALL??? SORRY, HAD TO BUG YOU. HOPE YOU FEEL BETTER FROM THIS BUG YOU HAVE RIGHT NOW... I DON'T THINK WE SHOULD BE ALLOWED TO BE SICK ON OUR BIRTHDAYS. POOH. SOMETHING TELLS ME THIS YEAR IS GONNA BE A GOOD ONE FOR YOU! HUGS, EMILY

sending good vibes...i know you will be so relieved to at least have some closure...although with something like this it is never really over, huh? hope the meds help you sleep... want something funny? today, i was so out of it, i accidently took my nighttime meds in the morning...which meant i took AMBIEN in the morning! so, needless to say, i have been sleeping a LOT today! i even have pill holders and i still messed up! thank goodness it wasn't a med that would really screw me up...this one, well, you just get a little extra sleep i guess! hugs, emily

Happy Thanksgiving! I already was pretty darn mushy in an earlier post, so i'll try to keep the mush to a minimum! steph, i like your 'grateful list'...i spent a long time this morning before i got up thinking about the blessings in my life. it is a really good way to start the day! to our fellow englishmen and women, dutch friend and canadian folks...well, i'm just extending a thanksgiving wish your way b/c you help make this site so great too! hope all of you are having a GOOD TURKEY DAY!!!! my mom started a beef brisket two days ago and i have been smelling it now for all this time and just can't wait to eat it! yum! later alligators! hope you all have good days! emily