DancingLight

oh yeah! gayle jogged my memory! what i wanted to say is during times like you are going through right now i just wanted to know if there was anywhere we could trade our bodies in for new ones! i think that would be good! i asked on monday at the dr. after my crazy weekend....but they said that they couldn't do that. then, one of my best friends calls and says "what do you want for your birthday? i know you just said that you want a new body, but i can't get you that....so, what do you want instead?" bummer, huh? anyway, just a little smile for ya! do you ever just feel like if it's not one thing it's another? emily

ditto what jess said... welcome... i am glad that you found this site....and we won't ever think you're nuts! i was broken-hearted though hearing that all 4 of you are sick with EDS and POTS...i cannot even imagine. how do you do it!? as for food sensitivities...yes, definitely lots of us have them. i am still working on finding all of mine...but i know for absolute certain that i am sensitive to dairy and gluten/wheat and avoid them completely...my dr. believes that some folks even need to avoid them in the medications they take. i still don't know how i do with eggs, soy, corn and some other things, but am working on it. and forget most any processed food. which really doesn't help when you have 4 mouths to feed, and all of you feel too miserable to be cooking and going to the grocery! eek! anyway, just wanted to let you know we're here to support you and please keep posting your questions. sometimes there are so many posts at one time it is hard to keep up...if thathappens just "bump" it up if you feel that it didn't get enough attention! i hope you will find support here as well as clues to how to help you feel better...how old are your daughters? the EDS and POTS connection is really interesting... well, goodnight for now! emily

we live in PA and like you nina, we had a lot of flooding. our basement flooded (which is where my mom has her bedroom and den!) but it wasn't terrible, just a big stress to move everything and suck up all of the water. still, so many people here got so much flooding and damage....and we are in PA... that is what gives me pause in the whole thing...that we had a flooded basement...that was nothing compared to floridians and others down south. and worst, those in haiti...as if the suffering in that country was not enough already... sorry....it puts things in to perspective. emily

nina, please keep us posted! i do hope you find some relief from the pain soon. are you able/allowed to take any pain meds in the meantime??? pain sure puts me in a bad mood too! honestly, i am lucky in the pain dept. and have tremendous admiration for those who deal with it day in and day out...i don't know how you do it and not snap the heads off of everyone in site. i am glad you vented here....b/c you spend so much time lifting others up on this site...it's out turn to lift you up and support you! shoot, there was something i was going to say...and i just lost it...i will remember after i post i am sure. so, until i remember the other reason i posted.... i really wanted most of all to send you hugs and support and let you know that i am thinking about you. i do hope you have answers soon....and relief from the pain! thanks for keeping us laughing even through all of the pain! later alligator! emily

merrill! love that you posted the definition! just think of all of the things we can learn on this site! i use that word ALL of the time along with many other yiddish words...i am keeping my grandmother's memory a blessing! i would like to learn more though! nina! you are keeping your humor through this that is for sure! morgan...ouch! what is it with medical procedures and pain! good grief. i will watch for you on tv! he-he. sorry, couldn't resist. let us know what the results show. i hate going through a zillion tests esp. if all i will hear is...well, we didn't find anything! emily

i know it is off-topic, but i can't help worrying about all of the people in the"hurricane zone"!! are you all okay???? did you get much damage?? i meant to post this sooner! it is hard to keep up with everything on this site! anyway, i hope you are all okay...and let's hope that this is the end of this craziness with hurricanes. later alligators! emily oh man, is the brain fog pathetic, i spelled hurricane wrong in the topic heading?! and i can't fix it! shoot.

michelle, thank you...and sorry...all in one breath. sorry to mis-use the board...b/c i am a guilty party here...i just go nuts over politics i guess. (all the more reason to refrain here, huh?) and i am sorry for adding to your stress that you had to remove the post etc. the post started out cute and harmless, but it did get hostile, so it is good that it is gone before things got even more hot! take care. emily

i love both of those ideas! the quilt is a nice keepsake, and the donations would be so meaningful too.... making that decision might depend on his personality! also, you are having a big party....so you could ask people to make a donation instead of bringing a gift and you would probably have a significant sum to give...like people who say bring canned goods for the food bank instead of gifts to the party. i have always wanted to do something like that for a charity... anyway, another thought, similar to the quilt idea.... when i had my 16th and 18th birthdays i had big parties...yeah, LONG before POTS! i'm glad i squeezed them in... we got really thick cork board stuff...i am not sure what it is but it is really thick and sturdy...got it at an art supply store. then, we put pictures of me growing up and put happy birthday on the board. we put the board up at the party on an easel with a permanent ink pen (nowadays you can get those great scrapbooking pens) and had it near the doorway and had everyone sign it. instead of just signing their names, people wrote messages...amazing things....that i will always have. i got them both framed in so that i will have them always.... i know they do that at wedding too sometimes. mine are a little less excitingnow, simply b/c most of the people i knew in high school are not my close friends anymore, although, i have stayed in touch with quite a few folks. still it is a memory of a happy joyful time in my life. i think this would be perfect for eric b/c the people at the party are people who are in his life for the long haul and having their senitiments all in one place would be so special... but maybe not manly enough? i don't know. i'm a big sappy, cheeseball...so what can i say? i like the quilt idea a lot too.... the board kind of gives youthe best of both worlds...the sentimental part for cheap and the donations can still be done too....except the framing can get a bit pricey. honestly, here's thekey....buy a board that is also a standard frame size! otherwise you get in to way expensive frames! and, make sure there is enough space left around the edges so that people's signatures won't be covered up when the frame goes on. sorry, i am being seriously bossy. oops. as if you are even going to use this idea! good grief. but if you do...well, now it i all thought out and you don't have to fight the brain fog to figure out the little details! let us know what you decide to do! emily

morgan!!! you are not a weenie! not even a little bit of one. but i hear you on the whining thing...i am very whhhhhhhiiiiiiiiiiiinnnnnnnnnneeeeeeeeeeeeeyyyyyy some days too! you are hysterical though...i know, if you don't laugh about it you will cry...but you sure do keep things funny even when they are miserable. i do that in therapy...start laughing and telling jokes when things get too deep! anyway, i am doing PT now too and it is manual therapy....so sounds like some of what you might be doing. make sure you tell them if you feel worse rather than better after your sessions so that they can adjust stuff! b/c that is what i have had to do. they don't always realize how sensitive our bodies are compared to "normal people". aahhhh, to be a medical marvel, i just love it! don't you just love hearing you are the worst case of something she has seen? that really cheers you up doesn't it? like with my pt...i have only been going for 2 months and i kept getting worse instead of better until we readjusted. i would get so sick and he would say, "i'm feeling kind of depressed about this, or i'm feeling discouraged." or, man, you are so sensitive and responsive unlike anyone i have ever seen. he wasn't trying to be insenstive, i know that...but i'm thinking....YOU"RE depressed...no, wait, i am the one who feels like crappola! anyway, off on a tangent, but i thought maybe the story would cheer you and bring you a smile. you are so courageous morgan...i really mean that. keep us posted (and i am not trying to scare you about pt, i am very much hoping mine will help in a non-pharmacologic way, it just is taking some fiddling with the protocol...and you sound like you don't always tell them what is going on! i.e. with the falling! eeek!) okay, gotta go! clonidine is kicking in. emily

hello all! i am not ignoring you michigan jan, i promise! i got your email and i will post here since others seem interested...i honestly have been more than a bit out of it the past few days with some crazy gi stuff and ended up the er (which i feel kind of dorky about, but that is another story!). anyway, i just haven't had the energy to do a long post explaining and will as soon as i can...sorry to put you off like this! i am feeling much improved, hopefully it will last...and i will post asap! emily

whew...that's enough to make me stop whining about feeling crummy.... thank goodness that they took it all seriously though, and you made it through the surgery okay... i know it will be a long and challenging recovery...and i hope you will continue to do well and improved daily... sending good thoughts.... please keep us updated or just chirp up if you need a lift! emily

oh shoot! no, i didn't send it through hotmail! i sent it through dinet to you...so it is gone! that is so very sad. well, email me and i will write again! emily

michigan jan.... i sent you a long email through dinet describing it....i think i sent it friday or something? i have hotmail, so hopefully i rememberd to click "save" on it if you didn't get it...i'm sorry that happened! i am glad you bumped up the topic b/c i just assumed you had gotten my email. it is a little out there and also didn't want to "promote" a particular kind of therapy...so sent it by email...if anyone else wants to know about it please let me know...i'm not being rude or secretive! just didn't know if anyone else wanted to read about it! anyway, can you send me an email just saying it's you and then i will send it again? maybe the email didn't go through? just let me know...just click on my username and email me! thanks...hopefully you'll get the message soon now. emily

oh man, where did you hear that???? i laughted OUT LOUD when i read that....it is great! emily

so, i just had to say...i'm jealous!!! i think it is just so great that you are all getting together like that! i don't know if i could travel anywhere and make it through a lunch right now! but, i think i will have to find the pennsylvania folks if i start to feel a bit better! i hope you have a good visit... emily

so, i am laughing b/c who knew this would be such a "hot topic!"??? anyway, i am going to have to sit down and re-read through all of the posts (so much info. to take in!) i ended up insisting on the urine sample and test...and guess what??? it was negative!!! so, i guess i took an antibiotic for nothing. ugh. i had had one dose, so i guess that could have thrown the results, but i am skeptical... seeing as i still am not feeling any better. i want sleep! i am trying to decide what to do next. 1. go to urologist who ended up referring me to an endo, which leaves me with 2. go back to endocrinologist who prescribed ddavp and says i have partial diabetes insipidus but i am not sure he knows quite what he is doing with the pots thing. 3. contact my pots doc. who also thinks possiblity of pelvic congestion syndrome contributing. 4. all of the above, none of the above, two of the above! as you can see i can't make up my mind. so, what do i do? ramble. merrill...i called the doctor today and said, so the test was neg. what do you want me to do now? and they prescribed...wait gotta go get the piece of paper...pyridium...have you heard of that one? i asked about taking a bladder analgesic earlier b/c of your suggestion and they were like, no, take an antibiotic. so, then, i am supposed to try that for a couple of days and then call back again. i don't really think they are paying much attention, but hey...that's why we are our own advocates. thanks y'all for listening and for helping me out on this...gayle...i know you thanked me...but i didn't help at all! i was right with you on needing advice! although you helped me out...by lifting my brain fog about bringing a sterile cup home! hope you are all having a good weekend without having to pee too much! emily

corina, i am going off topic too...but wow i am absolutely amazed at you! half of us have trouble with our english on our brain fog days anyway, and here you are translating everything you read and type. kudos to you for taking the energy to seek us out and learn as much as you can...even in another language! i was so "anti-internet" before i got sick, but now, it is my lifeline...and i find it absolutely amazing that we can feel so connected to people all over the world. i think we would all feel pretty isolated if we didn't have this board and other ways of reaching out. also, never be shy about asking for clarification on something....i am sure we use all sorts of things that are not even in the dictionary...we won't make you feel embarrassed! and katherine...that is soooo amazing that you know some dutch! who knew it would come in handy here, huh? emily

Katherine, those were really great tips...and laid out so nicely in the outline form instead of my rambling! i felt kind of goofy posting, but now i am glad i did b/c i feel validated about what happened and my decision... i can't believe you were prescribed the adrenal hormon while pregnant! eeeek! thatn kind of scares me! emily

hey jess... when is your appt? let us know... i want to hear more about it! i hear you on the alternative thing. i really got taken by someone who was in to the candida stuff and andrenal exhaustion. i won't go in to the whole saga, but i really did do my research before i saw her. but you will know how you feel about her after one meeting...you are in tune with your gut feelings! this woman was 85 bucks for the first visit which lasted over an hour...so i thought that was okay, but then, i was so tired at the end of the appt. and she was so pushy wiht supplements that it cost me double that by the time i left. i was not happy about starting multiple supplements at one time and she was very pushy. i was so exhausted i bought the stuff and left. and i am sitting there cleaning out my wallet in front of her, digging ofr enough money. well, i came home and thought about it, and ended up emailing her and taking the supplements back. i know she was not in the least bit happy with me, but i felt that a couple of the supplements were too risky...one was an adrenal hormone from cows! which comsumer reports had just rated in its top ten most dangerous supplements! the one goodthing was that i did start probiotics after seeing her. she also did muscle testing for foods and it was completely inaccurate. i really thought maybe i did have the candida thing, but now i have focused on eliminating dairy and wheat/gluten, and that has solved the problems that i thought were from candida. anyway, i guess my point is that i get wary about the supplement thing. and when they tell you there are no side effects b/c they are natural and the bottles have nothing on them! she tried to tell me that it was better than regular meds b/c think about how many side effects those have,etc. and i'm thinking, yeah, b/c they are fda regulated, we actually know what the side effects are! i figured out pretty quickly that she made her money off of supplements. and she was not the first person i saw who was like this. it's funny you said aobut how confident she seemed to be that she could help you...b/c this woman said to me...there is no reason you need to be sick. i can make you better. i've treated people like you before with good success. i thought that was pretty bold considering that i have be completely debilitated for six years! if there was a miracle cure, it wouldn't be such a secret! i see someone regularly though, who does energy work. and i know she is totally out there and wacky. but i love her and she is so wise. and the sessions give me that total relaxation that is so hard to get....i don't know if it really makes me physcially better, but it gives me a great feeling that day and a good night's rest. and i really like her. and she never makes promises about curing me. she admits that my case is a challenge. and she doesn't push any products at all...so that works for me. it is still a big expense though. i can't tolerate massage, so for me this is sort of my substitute! i have also tried acupuncture, massage, chiropractic, etc...but not with much luck. i like my yoga, meditation, energy work....and probiotics. otherwise i am conservative in the supplement dept! i try to stay open, but cautious. that is the hard part, b/c there are really great people out there and then there are the folks who take advantage of people like us who have illnesses that the traditional medical world can't fix....they prey on people who will do anything to get better. that is so sad! i hope you have a good experience. in the end, one visit will probably be enough for you to tell if you like her or not...so you are out a little bucks, but not enough that you can't recup, you know? sorry...i didn't mean to ramble so long. i just felt so taken by that woman and so upset b/c i had really done my research and consider myself a smart consumer! oh well. live and learn! later alligator! emily

i lost a lot of hair in the beginning...my hair was long and it just kept getting thinner and thinner. my hairdresser, our cleaning person, etc. all commented on it. like ernie...i ended up chopping it off super-short...no energy to mess with it anyway! it started to grow back and fill out again and is fine now, however, i have not let it grow long again...i keep it short. one doctor told me it could have been from going off of the pill and the hormone changes from that. who knows. i am now back on the pill. so, no answers from me, just that you are not alone...but it is very discouraging and scary. i was pretty freaked out about it. especially b/c i was one of those people who everyone commented on my hair and how pretty it was...so when i lost it, i felt like i lost part of my identity. i'm over that now! i am a liberated woman now with short hair! i've even had it cut super-short and loved it. i never thought i would be gutsy enough to do that! emily

i really like yoga a lot, but haven't been doing it lately...oops! i had been really consistent with it...alternating with walks. but, now with the nice weather, i choose the walks...i'm sure that will change in the winter! anyway, what everyone said was great! i haven't ever tried to take a class, i am not sure i could do that, but maybe you all will inspire me to try. i just wanted to share with you three of my favorite resources... The Little Yoga Book by Erika Dillman...i LOVE this book b/c it is laid out so simply, is only 10 bucks...reall you don't need all of those color photos in the expensive books! she has chronic fatigue syndrome, so that makes the book even better. it is laid out soooo well. Bed Top Yoga....a video to do gentle yoga in bed. the perfect level for me...if you are interested in this let me know...it is a bit of a hard one to find i think. Full Catastrophe Living by Jon Kabat-Zinn and the accompanying cds....LOVE this invaluable resource. this is MINDFUL yoga, which is just my speed and great for the fight or flight response i have. this does yoga as a form of meditation....which i love. my favorite parts of yoga are that 1. it reminds me of dancing which i miss so much and makes me feel good in my body. 2. it is very centering and calming and i am really working on that mindfulness thing in my life. hope you keep feeling good from your yoga! emily

here goes!!! 1. Emily 2. 28 (almost 29 ) 3. POTS and NMH (Neurally Mediated Hypotension) 4. 22 5. Pennsylvania 6. at worst: not completely bedridden, but close...just want to wake up and have it all be over! all the symptoms on the list...extreme fatigue, weakness, dizziness, nausea, chills, sweats, stomach upset, etc. etc. everything under the sun my most plaguing symptom other than fatigue has been the fight or flight feeling...even withouth the tachy...i feel like heart is beating so hard it is going to jump out of my chest! 7. at best: feel like i am not in a brain fog, can get up and do some stuff, go to an appt. and not be exhausted. get a good night's sleep, etc. am always, always, fatigued, and even at my best am very limited functioning and mostly homebound. can go for short walks, go to appts., concentrate to read, spend time on computer, etc. 8. oh where to start...sorry is that too negative??? i am refractory! let's see, off of the top of my head....and this is not going to be a complete list... welbutrin, provigil, midodrine, florinef, beta-blockers other than corgard, epogen, most anti-depressants (from ssri's to tricyclics, i've tried 'em all), reglan, levsin...that's all i can think of right now... i have given these meds the "college-try"... 9. corgard, ambien, singulair, allegra, xanax as needed, clonidine (just added it but so far so good), DDAVP, Effexor XR, alesse (continuously with no break for periods) man, it's hard to sound positive here...sorry! i just haven't found much success...yet... thanks for starting this thread...it is great, i hope more folks add there info. emily

hello julie, as promised an email that is not off-topic and about sunless tanner! i just wanted to say, you have really had a lot to process the past few months...a lot to take in. i am sorry that your appt. with dr. grubb did not provide you with a little more insight and helpful tips...that is always so disappointing...to feel like no one knows how to help you. as you know, i have been there! i don't really like being a medical marvel! you really sound like you are feeling miserable. and it sounds like there is other stuff going on in your life right now too...i hope that you will see some brighter days soon. i pulling for you! i know you felt like an idiot today, but maybe it was good that you were having a "bad" day and dr. grubb could see that. what do you think made him decide on the EDS diagnosis this time? did he agree pretty readily? well, that is it for now. i wish i had more words of wisdom but i don't. i just know that i hit one of my lowest lows after an appt. when the doctors said there was nothing to do and i thought, i cannot live like this! so, my heart really goes out to you. is there anything that would be a big treat for you? b/c you seriously deserve it. hugs, and please keep us updated... emily

shanna... i love your username...lilbanana! it makes me smile. chiquita banana, and i'm here to say, la-la-la...i don't remember the rest of the words! anyway, i just wanted to send you hugs...and let you know my heart goes out to you....i cannot imagine being 19 and dealing with all of this... yes, i do remember your eariler post and i am glad that you updated us... your experience is ABSOLUTELY INFURIATING...and unfortunately, all too familiar. i'm sorry, but your doc is wrong about the florinef...and i am not just being alarmist or know it all...it CAN make you depressed.... of course, maybe it isn't the culprit, but it is a possibility...and he sure didn't take it seriously.... i cannot tell you how many doctors i have seen, and even been accused of 'doctor shopping' too much and have had my share of times leaving appts. in tears. no matter how hard i try not to let the doctors be that powerful, they still get to me. what you have experienced is not acceptable...and you definitely need to find another doc....and do not believe him! hopefully you can find someone soon, in case it is the florinef....b/c that is just not cool to have to stay on it and suffer if it is the cause. YOU ARE NOT CRAZY. althtough we have all been told it a zillion times on this board. another option would also be a psychiatrist...that can be a good thing b/c they will verify that your illness is NOT psychological. or acknowledge that your depression is a symptom, not a cause, of your illness. also, maybe they would be able to tease out the florinef problem. it is hard to find good ones though, but overall i have had good experiences. and found much relief from their help. it is just another avenue if you can't get any docs to take you seriously. i have a letter that says...her illness is not psychological!! you shouldn't have to go around trying to prove yourself when you are so sick, but unfortunatley that is often the deal. definitely listen to your gut, and don't take no for an answer from this doc...or any others for that matter. it is hard to persist and hard to keep fighting the medical profession...but hopefully you will find someone soon. it just makes me so angry i could scream. the awareness in the medical world is so bad right now. i am guessing that you were dismissed so readily as a psych case/hypochondriac or whatever he thinks you are...b/c you are a YOUNG WOMAN. that was my experience...you can't be 19 and sick and you are just anxious and depressed and need to pull yourself up by your bootstraps. UGH! do the docs think you WANT to feel this way. i cannot believe the exercise comment....well, i can....one doc told me that he could prove to me that i wasn't exercise intolerant and there was nothing wrong with me and that i was just deconditioned...he would just put me on a treadmill. ugh. sorry, as you can see, your experience really hit a nerve with me....i just feel for you so strongly...your experience was so unjust. please keep us posted...and i promise no more ranting on my end! just remember, you can always come here for validation! emily

jess...did you go inside my brain to write that??? that is EXACTLY HOW I AM TO AN ABSOLUTE T... and it drives me nuts. my mind is always going, going, going.... and in my head i can think of all these things i want to do, but my body is saying...no way. i have got to go eat some dinner...b/c you know how it is if you get too hungry...i can't handle it. anyway, all of the posts were so good on this topic...friday, i hope that you find something that helps soon. i will try to post more on this topic later, b/c there were so many good answers on it and i also struggle with the "anxiety issue." although, just talking about it here helps a lot b/c it is validated and not alone...which sometimes i think is the worst part of anxiety...feeling like you are crazy and will be judged as weak for it, you know? merrill...you crack me up too! i have some thoughts on the breathing thing too! hey, i finally learned how to use these little clickable smilies...boy, i am high-tech now...they are fun! emily