DancingLight

oh julie!!! i will write more later. but i am just getting a kick now out of the off-topic side of this post...how we look... gayle! i think i always look terrible! i am sooooo pale and have huge circles under my eyes. if i don't put make-up on and self-tanner i feel like an absolute ghost and am embarrassed to be seen. i know it is vain, i'm sorry...but it is hard to look at myself some days! somehow, when i look as bad as i feel, it just makes everything worse. one day, i felt soooo awful but i really needed a haircut. i used all of my energy to get a haircut, b/c i thought it would make me feel better.... but no, she gave me a bad haircut! and it looked terrible. i was so fragile that day that it just tipped the scale for me and i was so depressed. i can totally laught at myself about this....but honestly, somehow the bad haircut on top of everything else was so miserable. i thought, how, in the grand scheme of things am i so upset about a haircut? my best friend and i got a lot of laughs out of it. anyway, my point is...i do look crummy a lot of the time. and sometimes i use my precious energy to do "girly things" like paint my nails and put make-up on just b/c it makes me feel human...and sometimes i think that is important! but, when people see me i always have make-up on and so they are like, oh you look sooo good, blah-de-blah. my mom and two best friends are the only folks who really "get it" and can see it no matter how much make-up is on. or i won''t bother with it in front of them...anyway, my mom can see the color go from my face as i fatigue and she can see the eyes glossing over and me zoning out, as can my best friends. (yeah, they're keepers, too bad they live far away!) gayle...you are super-sun-sensitive right? me too, but not as extreme...so i really need that self-tanner or i am sooooooo white. it is scary. i wish i didn't care how i looked and was not like this, but i do care...is that a bad thing? okay, i went way off topic...please forgive me julie! i shouldn't check-in right before nap time huh? but it's my favorite thing to do! hopefully at least you got a laugh out of me....i'm showing y'all my "dark side..." oooohhhh...the dark side of dancing light! so, julie....i will write something actually meaningful later, i promise, but i am so glad you touched base here...b/c i had that september 22 date stuck in my head and wanted to know how it went. i know a lot rides on these doctors appts! emily

hello julie! i just wanted to see how your appt. with dr. grubb went and what you decided to do about the EDS issue. i haven't seen you on the board as much lately and have been wondering how you are doing...and worrying of course (i do a lot of that!)... i know you are having a very rough time lately...and just wanted you to know we're here for you! please let us know how your appt. went. i hope that you were able to get some useful information...i am sure you are wiped out though, as it has probably been a long day! emily

amy, i never "officially" welcomed you! it is really great to have you here on this board. we can always use the wisdom of nurses! and your humor and faith and spirit are a pretty darn good thing too! welcome, visit us lots and thanks again for your beautiful post/story! emily

opus, that is definitely a lot of stress...i don't think i could handle it all as well as you are! you have quite an amazing spirit through all of this... i am such a homebody it is so completely unimaginable to me to lose my home and be uprooted like that... i know you are looking at all the things that you have to be grateful for...and that is really amazing.... still, i cannot imagine all that you are enduring. thank you for keeping us updated...keep letting us know how you are doing. i can definitely see that this would all trigger pots symptoms! just a wee bit of stress! emily

hey nina! my best friend calls it "Fun with Body Chemistry!" i love that term. sorry you are so miserable...you are such a trooper...i hope you feel better soon. as for those D's at the end of the allegra or claritin...can't tolerate them either! last time i had a sinus infection they gave me a decongestant too and i had serious tachycardia too! what's a girl to do??? darned if you do and darned if you don't! ugh! sending hugs...hope you feel better very soon! emily

bump! so many new folks to add! also, it will remind me when i am not drugged on my ambien to post soon! this list is invaluable....so i hope people keep adding! emily

oh glimmer... i am sorry i didn't respond sooner. are you feeling any better yet from your outing? everyone said great things. i really like what mary said that the end too about how she is forgiving to herself and tries to give herself time to recuperate. i read your email and just thought, yes, yes, yes...i hear you! for me, anything social, emotional, intellectual or physical is draining. some days i can talk on the phone 15 minutes before crashing and some days an hour...but a phone conversation is my project for the day. also, when my friends come home over the holidays...(i'm still a townie...so folks are always passing through) or when someone comes to visit...even if it is just for a couple of hours, it takes absolutely all of my energy just to lie on my sofa and engage in conversation. i have to know that if a friend comes from out of town and stays here, that i will crash for up to a week afterwards. although, there really is no timeline for the crashes b/c it depends on how i was feeling before thye came, etc. it is very discouraging to me...that something that is "fun" like that, results in such tremendous physical payback...and emotional for me. it makes me so sad that visiitng with a friend makes me sick afterwards. that joys are as hard on my body as sorrows. ugh! ooops, don't get me started. i read your post a while back, but am just getting to respond now...but i wanted to say...i picked up on you feeling guilty and beating yourself up and blaming yourself for overdoing and that you shouldn't have done it.... well, that is such a hard call. for me, social opportunities are rare...so if i know i have recup time later, i will push longer than i know i 'should' b/c i want more to be with my friends...and i'll deal with the crash later. plus, when you are getting a moment away from being sick and enjoying yourself, there is nothing more difficult than having to say...well, i better go now, b/c i know if i don't i won't feel well later! ugh! it is a constant balancing act, at whihc i am still no expert that is for sure! but i do hope you can be more forgiving towards yourself. we all do this stuff...it is part of the whole experience i guess. i don't know... i think i am getting sleepy...and will have to stop here in my quest to catch up on old posts! hang in there. i felt your pain though....it's like seeing friends is an emotional "high", so it only makes the crash afterwards seem even lower! good grief! emily

i just wanted to update on this med....just in case anyone else is thinking about it or wants to know more about it... i started at .05 mg and then have now upped it to .1 mg. it really has made the extreme heart pounding/fight or flight better. i still get it, but it is not nearly as extreme. and i feel better sort of having this med prevent the attacks and keep them under control more, rather than having to wait until i feel so awful and take a xanax. this way i can save the xanax for when i really need it and it will be more effective that way. also...the biggest bonus on this med...is that i have not had a single stomach ache at night since i took it, nor do i have any problems goign to the bathroom in the eve before bed. okay, so i'm talking about my bowels now and pee in my other posts....sorry! but, anyway, this med can help some people with delayed gastric emptying. i ddin't know that was what was going on with me, but maybe it was...all i know is that it feels great not to have a stomach ache for hours every day and not to be "clogged up"!!! the side effects are tolerable (i already feel so bad right now that i figured, i might as well try the drug!)...the dry mouth is yucky...but that is not a major problem. and i am still in the "adjustment" period for the med, so am even more spacey, fatigued and dizzy, but mostly just fatigued....hopefully i will conitinue to adjust more. this is the best i have tolerated any drug in recent memory, so for me it is a good start. ( i hope i didn't just jinx myself!). it is really nice not to have such extreme fight for flight...in which i think my little heart might take flight outside my body somewhere! i can feel it in there saying "hey, let me out, i'm working so hard...i need a little breather!" okay, just an update. thanks y'all! emily

hey jess!! sorry, as you can see i am a bit behind on my posting/responses and am catching up! (i still have a ways to go! i have to learn that i can't reply to everything even though i want to!) anyway...i figured, day 2 is tomorrow and you will still need a little "help getting through"...so this is for then! i am sure ethan will do great, b/c he has been given so much love from you, he will be able to go confidently into this new setting... and it will give you some time for your stuff... i hear you on the germs...but, well, hopefully the handwashing will help. the daycare sounds really great! was he pooped out after his first day??? emily

congratulations and thanks for sharing the good news! i am partial to girls too! i am glad everything looks good so far.... keep us posted... emily

thanks! that is good... recently i had a dr. say to me..."listen to your body, and don't take no for an answer!" pretty good coming from someone in the medical profession...it has made me stand up for myself more... emily

hello katejude! i just wanted to say welcome too!!! i am glad that you found us... there is a huge range of levels of functioning and improvement on this board, and we are each so different...which keeps it always interesting around here! the best part is that every one is amazingly supportive and generous, and full of good tips and information. if you have specific topics you want to search, you might find stuff under "search" and put in a keyword...to see what others have said in the past...it might help answer the many questions i am sure you have! or, just post and folks will help out! hope you start to feel better soon. emily

ernie, please continue to keep us posted on things. i am glad that you found strength here... you always take the time to respond to everyone else...so now it is your turn to soak in the warmth! it is hard to keep fighting with the medical world and getting more tests and trying new things! i hear you though...i went to see a new pots doctor and i was so excited! i thought, i never thought i would be in this position...or in the position where there isn't a local dr. who has a clue...i am that much of a mystery. oops, rambling... emily

thank you merrill for your concern...and morgan and gayle and every one else! i decided to take a dose of the antibiotic after dinner tonight. it is macrobid and is only 2x a day for 3 days, so i figure i should know pretty quickly if it is helping. once i know how i feel on that, i could add one of the bladder analgsics you suggested...but didn't want to do it at the same time, b/c then if i have side effects i will have no idea what is doing what. and, i am not so swift sometimes...gayle you are a genius! man, sometimes i wonder where my brain is. i don't know why i didn't think of sending someone to go get a sterile jar for me and then i could just pee at home! and have someone take it in! duh! so, i just emailed the dr....they actually check that! and asked if i could still get a test done with one dose of antibiotic in my system. i said i was uncomfortable not knowing whether this was a UTI or not and just taking an antibiotic without knowing. my bladder is always a pain and i am not convinced that this isn't IC, like the rest of you have! so, i said my mom would stop by in the morning to pick up a jar and i would bring it back in the afternoon if a test would still be valid. hopefully only one dose of the antibiotic wouldn't be enough to mask the infection if that is really the problem. gayle, do i just stick the jar in the fridge until i take it in? also, that is a good idea about the morning pee, but honestly i just pee all night long right now! so, i don't know when to do it! it's like i ahvne't even taken my ddavp! ugh! i am really hoping for a tad bit of sleep tonight. gayle, please also keep us posted. and thanks again to all of you. i grin from ear to ear when i get responses! you are all soooo helpful. it is so hard to get any answers from the drs. office and you all really helped me navigate through this whole thing! these things might be a nuisance, but at least we are in it together, huh? emily

so funny about the evenings... my mom is winding down, and i am winding 'up'...as much as i wind up, that us...which isn't much... but she wakes up in the morning and sees that things are picked up, letters written waiting to be put in the mail, etc. and thinks, when did emily do that? i it is so funny. that is an interesting theory, jess... i was just glad to hear other folks wake up in the evening too...no matter what i do to change my bedtime i go to bed late and get up late...good thing i don't work i guess! my schedule is goofy! okay, more later alligators! welcome katejude! will post on your other post later! emily

Has anyone taken Macrobid for a UTI?? just wanted to check before i start it... i tried to get the drs. office to let me pee in a cup and they said, no you can take the antibiotic first and then see if you feel better... i was a bit frustrated. but i am also desparate...and i had someone who could get the script for me, and i didn't know how i was going to get to the dr.... i am so irritated though that i actually asked in two different phone calls to the office about peeing in a cup first...before getting the antibiotic and they said no! and they wonder why antibiotics are over-used... sorry, i am so tired from being up all night peeing that i am so exhausted. and cranky. and, i am baffled that they turn you down when you actually ASK to pee in a cup!!! aargh. i just don't have the energy today to be more aggressive...is that terrible? should i wait to start the med until i go to the gyn or something instead and get a test done???? ugh... emily

ernie, i agree completely with the others.... i too have read your posts since i joined ndrf and now on this site...and your story is full of so much physical suffering... you DESERVE to find what is making you so sick...and hopefully in turn, answers to help you feel better. the quest to find an answer to your SUFFERING is worth the bucks in gov't money... you are a human life who deserves the best answers to you struggles....it's not about money in my eyes...it's about your quality of life, which is very low right now (i think i am right on that)... yes, the gov't in our country and yours spends money on ridiculous medical procedures. sometimes i gasp at what medical asssitance doesn't blink an eye at... but in your case...there is no question that these tests are worth it for you. YOU ARE WORTH IT ERNIE AND SO IS THE QUALITY OF YOURLIFE! the reason medicine is here, when used correctly, is i hope, to relieve human suffering. may you find answers....you have had a tremendous struggle and you keep an amazing spirit. emily

THANK YOU!!!! BOTH AMY AND MORGAN! I just wanted to thank you both for those beautiful and inspiring stories. wow! i felt so honored, amy, that you posted that for me! what a gift. i shared them with my mom (who is not spiritual like i am) and she was just crying her eyes out...i hope it is okay with both of you that i shared them with her. i wanted you both to know that i will respond more to both of you soon...and that i wasn't ignoring your wonderful kindness, herdswoman/amy... i just hadn't had the steam yet! and i need to hit the sack now...i just wanted to thank you and let you know...more to come from my end! emily

you all are sooo wonderful!!! can i tell you how happy i was to hear all of your helpful tips and advice? i was so relieved to hear that you knew what i was talking about. i was feeling so embarrassed about it all...i don't know why! i really appreciate all of the responses...they are all great... a couple of questions... which bladder analgesics do you take? has anyone had negative side effects from them? has anyone ever heard of using lidocaine as a topical anesthetic on the tip of the (don't know the anatomy term) is the urethra? right where the pee comes out? (man, i am laughing at my own idiocy here...). anyway, i read about using that for irritable bladder, but it was from a more "alternative perspective"...it sounds like a good idea though, b/c what it is supposed to do is sort of take away that urgency you feel when your bladder isn't full yet. and help you to go longer without having to go then. just a thought...always am looking for non-systemic options. do you think a doctor would go for it? hmmm.... i think that's it... just to rule out the bladder infection if i am still waking up all morning and night tonight i will just try and go to the doctor and pee in a cup and rule it out. that way, then i can have the evidence that i might need to look into IC. i don't eat much acidic food at all actually. only a little bit...but will watch it more. i only eat a little chocolate every once in a while, a teeny caffeine every once in a while. not much with vinegar in it...maybe a little mayo. and only just ate a couple of things with tomatoes recently...b/c i thought maybe they were one of my food triggers (maybe that is my problem!)... also, have been taking baths with some different fun bubbly and smelly stuff, which could do it... oh, morgan/michigan jan...do you think the clonidine could be contributing? michigan jan...i hope it is not the corgard b/c i have tried to go off of it a zillion times (there i go with that word again) and i can't at all. i literally cannot be off of it and have not been able to tolearate another bb either...so it is a tough one! but, i think i will stay away from feeling like i am going to die and stick with an irritated bladder... oh well. hey i finally used one of those smilies in my post. cool. anyway, thanks all of you...i got responses from so many of you who i trust and love to hear your tips! gayle...i hope you get some relief too!!!! and i am sorry that so many of the rest of you struggle with the same sort of symptoms...if it's not one thing it's another isn't it? keep us posted! emily

I am going a bit crazy from this symptom...mostly b/c it is interferring with my sleep. I will try to describe it and keep this short (not my strong point!). Once I wake up to pee for the first time at night, after about 4 hours sleep, then i can't fall back to sleep b/c i keep having to pee. sometimes i really do have to go, but sometimes i just feel like it... Here's the part that is embarrassing and really annoying. It's as if once i pee that first time, my bladder is so irritated it won't calm down. I feel like there is pressure all the time pushing on the pelvic bone or something. and, it feels very irritated externally too...like the nerves are agitated. I can't fall back to sleep b/c it literally makes me feel so agitated all over having that discomfort. it feels sort of like being aroused down there, but that isn't what is going on...it is coming from the bladder area...does this make any sense at all? so, i toss and turn. it still feels that way throughout the day, but more tolerable, i guess b/c i am not trying to sleep! i take ddavp and it is as if i am not even taking it. it is so strange. and once it starts to wear off (long before the next dose) i am so uncomfortable. and even after i take the dose in the morning, my bladder doesn't calm down, so i can't go back to sleep. i guess i don't really know how to even desribe this! has anyone else ever had a symptom like this??? i don't quite know who to call....what kind of doctor or what could be causing this... any tips would help! i don't feel like calling all sorts of male doctors and telling them my bladder feels "aroused!" he-he! hope that made you laugh! b/c i am trying to laugh at this! my endo is not exactly very clued in about ddavp, pots or any of that so i don't know if i even want to go back. the urologist i saw sent me to the endo b/c he was completely baffled. but this is a new symptom. and it is happening every day... thanks for any advice/tips/insight! this symptom is unbeleivably annoying....i have no idea why! emily

opus, that was funny! you found humor in this craziness too! thank you for your update...please continue to update us, as i hope other folks will too. i am glad that you are safe.... i honestly cannot even imagine what you are feeling though. i know people always say, being alive is what matters... but that doesn't minimize the emotional trauma of the hurricane, and whatever damage it may have done to your home... i am not sure i am making much sense right now...already took my ambien! but, hopefully you get the idea...basically my heart goes out to you. i really can't imagine. i live in a valley...not much for crazy weather here! emily

yes! thanks! that was a great idea to post! we didn't do anything special...but did light the candles and eat an apple with honey! i am definitely hoping for a healthier new year! but, even if it is not healthier...i will be working on being more thankful for what i do have and finding more joy in things! happy new year to you all! emily p.s. i would love to chat with other jewish folks! i have soooo many spiritual questions and thoughts and would love to hear how you nourish your judaism... i am not well enough to go to services, and have not found a community of people which i long for! if you have any good tips or resources or whatever, please share!

morgan, did i really say zillion twice? oops! i guess i exaggerated a bit... thanks for teasing me! you crack me up! my bed is one of those tempur-pedic adustable beds and it weighs i think about 400 pounds (for real) but it seems like a zillion or fifty billion or something like that! i got that from my college roommate! she was so funny! and soooo southern! okay, off the subject but you made me laugh! emily

amy, do you wear compression hose? my shoe size went down a whole size when i started wearing them...i hadn't realized how puffy my legs were from the fluid/blood pooling! and, my legs would feel so much heavier and achy as the day went on too before i started wearing them. i felt like i was walking through molasses... my hands are also puffy in the morning or after lying down and then it goes away pretty quickly. none of it is extreme for me though.... sorry, enough rambling! i never realized how puffy i was until it went down! emily

amy, i do not know enough of your situation to say too much... and i am not sure how much water you are retaining, etc. but, i have to pee more, esp. at night, when i am lying flat. i just learned that this can be b/c during the day with the pots you have pooling in your legs and stuff. then, at night when you lie down, that fluid evens out more and makes its way back up from the legs.... then your kidneys say, aha, gotta pee! one way to "trick" the system is to prop the head of the bed up a few inches. i haven't done this yet though b/c i have an adjustable bed that weighs a zillion pounds! anyway, that can be another reason for increased peeing at night... plus...you were just pregnant right? could your bladder be weaker/more sensitive from that? this is way out of my ballpark though! anyway, i have to pee a lot at night too....but it hasn't been a sudden change either nor do i have all sorts of the water retention/swelling you are talking about...so i don't know...just throwing another possibility out there! florinef is a corticosteroid that increases the body's ability to retain sodium. so you eat a lot more salt when on it and retain more fluid and thus increase bp and blood volume. hope you find out something soon...and that the doctor takes you seriously! emily