DancingLight

p.s. my grandma swore by prune juice....it DOES work, but has a lot of sugar in it. it literally works as a laxative...especially if you can tolerate it warm. works faster than prunes not in juice form. aaaahhhhh...wasn't it nice to talk about all of this!

jess, i think about you often and had been missing seeing your on here...although i haven't been on much either! i was glad to see your name pop up, but not glad that you are so miserable! don't you just love talking about bowel habits? at our age we are not supposed to be talking like our grandmother's! just teasing you. i talk about it a lot too! anyway, i honestly don't have a lot of good tips. but, i saw that you asked about the fiber supplements out there. citrucel advertises as gluten-free...it is in their faq section online if you want to check it out. i think that metamucil is NOT gluten-free. also, there are some things that are marketed i think for folks that don't want the traditional psyllium supplement. look at the freeda vitamins site for some ideas. you can always give citrucel a shot...if you feel better on it good, if not stop it! it did help me a little at least get over that 'hump' one time! the other thing that i used to like the best when i had so much trouble going and would feel so clogged up....was colace. that stuff is so gentle and not a stimulant laxative or anything. you can just take it every day. it is a stool softener. if your poop is hard! (sorry, couldn't resist). hey, you have a toddler, you deal with poop and pee all day! my pots doc is a pediatrician so he talks in terms of poop and pee. it is funny. you can just buy the colace in the generic...it is soooo cheap. like costs nothing, ac ouple of bucks for 100 tablets. i liked it best over citrucel, but for the severity of your constipation maybe citrucel would be good? i can't see why you couldn't take a stool softener being pregnant. hope you get some relief (literally) soon! take care....just think...you are almost throught the first trimester and maybe your morning sickness will finally settle down! did you find relief at all from the zofran or preggie pops? take care! later alligator! emily

aaaaaaahhhhhhhhhh....perfect.... i LOVE how merrill put that....'peaceful energy'...that is sort of what i was trying to get at with the 'good ripples' thing...but merrill said it much better. i stew over things for hours on end too...i hate that compulsive side of me. and i wish i would have handled things differently...i know it is 'toxic' to do this, but have yet, even with all of the meditation i have tried to learn, to let it go... tearose...i know you are very insighful and take a lot of time to process things. i know you will find what works the best for you...honestly, you always say things on this site with such grace and humor...i bet you can beat us all once the lightbulb goes off in your head! you'll have one of those, "that's what i should have said" moments...and then, you'll be ready and waiting for that next person to even dare to say something nasty to you! emily

tearose... i am going to play devil's advocate here...and say, as my best friend says...always opt for graciousness. i think that when we let people get to us like that and confront them we just 'let them win'. i am NOT saying that i don't vent like heck when i get home and that i am able to let things slide off of my back. in fact, i get way too emotional about stuff, and i would have gone nuts too. i kind of want to get one of those inflatable bobo dolls to beat up after such a confrontation! people constantly say that stupid stuff to me about how good i look, etc. i guess what i am saying is that if i get angry and insensitive back to someone, i feel like i just stoop to their level. like katherine said, they may not be educatable (is that a word?), but that is the route i would take...i don't have a handicapped sticker so i can't give specific replies. but, saying "you don't look mentally handicapped..." that just stereotypes someone who is mentally ill in the same way that we don't want to be stereotyped. i think having the DINET cards on hand would be a great thing. that way you used the 'negative' incident as a way to send 'positive' ripples into the world. or, simply to say, something light, like, 'yes, make-up does wonders.' or 'i may look okay, but i don't feel okay.' or 'i'm glad i look better than i feel.' that is more humorous than nasty. i know that i can't change the world in huge ways. but i try to use this illness as an opportunity. i know that before i got sick...I was ignorant. i didn't know what it meant to really suffer or be sick. i was always compassionate...but it wasn't on the level that i understand now. what if it was me who thought those thoughts? although, i have to admit, i would never say that to someone! yes, people surprise me all the time. and i can be hateful...i am not a saint. but to their face...i'm going for graciousness. or educating them if the opportunity is there. of course, i am saying this in a moment of calm. maybe on the day after i saw the GI doc or the PT...well, my words might be a LOT different! i wish i didn't let things get to me like they do. NOBODY can know what it means to walk in anyone else's shoes...we only walk in our own...we can't know anyone else's suffering...so i hate it when people act like they can! okay, well, i hope i didn't offend. i am sounding a bit soap-boxy and i am not sure i should even post now! but after all of this typing...i will. i hope you will not take it to minimize your anger or pain. i don't mean it that way. i would have been totally upset! i just wanted to post a different perspective. okay, off of my soap-box. later alligator! i AM glad to hear you got to go somewhere! yeah! i hope you keep coming out of the potshole! emily

hey amy! welcome here. i am glad that you found us! i hope you will find the board a good source of support and information. i just feel like being a noodge (did i spell that right?) to merrill right now...he-he... i agree with her about the compression hose 100%...but i vote for the juzo brand--the really sheer ones. as for salt tablets. i didn't really have a lot of luck with them...but it sounds like a lot of other folks have. i really don't know how merrill drinks one in a tomato juice! eeek! i wish i liked the taste of salt more... everyone had good things to say to you already as to the hr stuff. i take a beta-blocker too and for me that made all the difference in the tachycardia. and, as previous posts said, your heart IS doing what it is supposed to do to keep you from fainting! so, that is a good thing! as for salt tablets...when i did try them, i couldn't get down the plain ones. they dissolved so quickly and even with a LOT of water, i puked them up. sorry. just the truth. so then i got this brand called thermotabs...which are coated in potassium and are MUCH easier to get down. you might have to special-order them, but they ARE available--despite what your pharmacist might say! i think my pharmacist just thinks i am crazy with the combination of things i take. mostly, i don't have anything to add, despite the fact that i seem to be rambling right now! i hope that you will be able to find relief from your symptoms and see improvment with time. if you get a chance...fill out the who, what, when, where and why post floating around...it is such a great resource b/c everyone has put their name, age, etc. it will help us get to know you better! again, welcome... later alligator! emily p.s. tearose...what's for dinner?

i'm not positive of what you are describing... but, i do get that sort of pounding/waves in my head (not the exact location you described) when lying down sometimes, and like you said, esp. when my system is keyed up. anyway, sometimes it helps me to prop myself up a bit or be in a recliner instead of flat... the sensation to me is like too much blood pounding in my head all at once! i might not be describing the same thing though.... but for me, not being completely flat when i am like that helps. emily

Martha, That is great that you tolerated the myofascial release... I hope you continue to find it helpful...you may be on to something for your symptoms! You may be able to open up those tensions and gradually have more energy, and then be able to tolerate exercise, etc. The physical therapy that you saw mentioned in the article...they use myofascial release, cranial sacral therapy and neural tensions to help create smooth glide again in the nervous system. That is a very simplified version. Just make sure you keep the level of treatment so that you can tolerate it and not have a 'flare'... There has been a connection found between neural tensions (these blocks in the system) and symptoms of OI in some people. Maybe you are one of those people! So, keep us posted. So far, I have had trouble tolerating the manual physical therapy of myofascial release, neural tensions and cranial sacral therapy. I go in to a flare so easily and then my neck and everything feel worse. And all of the POTS symptoms too. I am working to find a better balance. Emily

let's see... a humidifier helps me a lot as well as those breathe-right strips with the menthon in them! those are two ways to help without aggravating the POTS... hmmmm....i can't think of anything else...except that you have a right to be cranky... most people are cranky when they have a cold even with no other junk going on...so you definitely get to be cranky! how's that for a theory? as for it aggravating POTS/HR...definitely...fighting anything infection, virus, or otherwise puts a stress on the system... so treat yourself to some pampering and let your body recuperate! how's that for an order? just teasing you! off to bed now! later alligator! hope you feel better soon! emily

tearose! those things sound really good all put together! as for the hat....well, i knitted one...but i still have to actually do the "felting" part...so it is about 5 sizes too big until then. maybe this will motivate me to get it finished...so i can come sit beside you with it! yup, it's rare for me to not have something to ramble about! i'm going to settle in with the harry potter movie now. and cuddling with asher. it is so nice to know we aren't truly alone on these crummy days isn't it??? later alligators (my fellow folks in the potshole right now) emily

tearose... i don't have ANYTHING exciting or brilliant to say... just that i am reporting from the pit too.... i just had to use that phrase...i love it as much as potshole! emily

merrill, DDAVP basically is used to replace the anti-diuretic hormone in the body that we already naturally make. dr. grubb often prescribes it for nighttime use for those who wake up to pee a lot so that they will retain more fluids by morning and also not wake up so much during the night. we should naturally produce more ADH during the night so that we don't pee as much as we do during the day. do you remember people talking about diabetes insipidus at all? well, anyway, those folks don't produce the hormone and take DDAVP to replace it so that they don't flush all of their fluids out. their urine output is high and their urine is very dilute. i had the water deprivation test for diabetes inispidus...a nightmare for me...and they said i had 'partial' diabetes insipidus. i am not so sure about the accuracy of the test, but, anyway, that is what they said. that would mean that i produce some ADH but not enough. i have to pee constantly but don't know if it is DI or just the POTS. still working on figuring that out. so, i take DDAVP at night and during the day and it is a big help. anyway, that's the scoop....just think how much you now know about this drug now? ha! later alligator! emily p.s. goldiedance....yeah!!! i hope this drug keeps working for you.

corina! i know this is off-topic... but HOW WAS YOUR TRIP??? i hope you feel refreshed and rejuvinated...as opposed to wiped out and exhausted and POTSy... let us know when you have the energy....just wanted you to know we missed you! emily

hmmmm....very interesting.... another weird thing to add to the mix about bananas (chiquita banana and i'm here to say...oops, sorry) they have serotonin in them and can make some people feel weird (per my geneticist at hopkins who is in to this diet stuff...) but i don't know anything else about it. i cut them out and haven't added them back in yet to see how they affect me. depressing...b/c the fruit selection in the winter stinks!!! apples, pears, apples, pears, grapes, apples, pears, grapes, gross oranges b/c of the hurricanes... emily

beverly, maybe nicole's cardio/pots doc would agree to prescribe it? or whomever is prescribing it now? some ob/gyn's are more liberal on period suppression than others...just depends. i did my research and decided the pros outweighed the cons... in the grand scheme of things even suppressing her period for a few months would let her know if it helps or not. then you decide from there if you want to keep suppressing it. that's the long and the short of it from a former health/sex education nut. i love this stuff! as for the pill she is on now...if it is reasonably low-dose...she can just stay on that one and skip the placebos. that way she wouldn't have to change the version of hormone she is getting... i think there is a website noperiod.com...but don't forget it is a one-sided view... i could go on forever about this...but i feel way too crummy. oops, sorry, couldn't suppress that whine.... emily

beverly, i don't really have time to write right now... but i did want to say that since nicole already tolerates the pill fine... i thought this might help... i tolerate it well and went on it long before POTS due to miserable periods. since POTS i tried to go off of it, but no luck. i take Alesse and i take it CONTINUOUSLY with no break, EVER! first i did the schedule like seasonale, then, just stopped having a period completely. my POTS doctors and ob/gyn agreed to do this given that i am so low functioning anyway and was worse for two weeks out of the months that i had my period. i still have a lot of breakthrough bleeding and spotting, but i don't really care. i could up my dose to a different pill with more estrogen, but since this is working for the POTS symptoms, i wll take a little bleeding right now. seasonale is just a marketing thing really...it's just a low-dose pill marketed to have a period 4x a year instead of 12x. you can suppress your period with any low dose pill. and each pill will be tolerated differently. okay, gotta run. hope this helps. emily

jess, i think everyone covered everything already... but i forgot until nina mentioned it how much i LOVE those breathe right strips! i like the ones with the menthol...and you scratch them (like a scratch and sniff sticker!) to get a whiff of menthol. they really worked for me last time i was clogged up. gosh, i sure hope you all feel better soon. emily

jersey girl... when you said "i can't even get a call back from the doctor" were you referring to doctors in general or a specific doctor at hopkins? i am currently doing the PT prescribed in that handout by doctors at hopkins. i am very early in the process and it is too soon to tell if i am having results. mostly, my symptoms are harder to manage right now but that is part of the process... your post had perfect timing as i just got back from PT...and logged on quick. i need to rest a little now...and hopefully will come back to this post later and go into more detail on my experiences. there was something else i wanted to write...aargh...what was it... emily

JR, the first time i bought the regular preggie pops and liked them all...but didn't think the berry or fruit flavors did much. this time i ordered ginger and a mixed pack of the queasy pops. i think that i like the ginger the best so far...i think they work the best for me. i did try a cinammon one the other day and it seemed good too. i haven't gotten to try all of the flavors yet, and they have some new flavors since the first time i ordered... so, while it is a good thing that i haven't needed all the flavors yet , the flip side is that i don't have a good report on the "best" flavors for me... probably ginger, but then sometimes i like the other ones just for variety! some people can't stand ginger i guess...one of my friends ordered them, and didn't like the ginger at all and hates ginger tea, etc....thankfully i like the flavor! how about you???? emily

oh beverly, that sounds so familiar...i often don't post my updates b/c it is easier to focus on other posts from other people! please don't stress about posting....just know we are here and i think of you and nicole so often. emily

If you have a scanner, you can email them to Katherine. If not, you can email her and she will send you her snail mail address... She listed a special email in the topic that is Pinned "faces of dinet"....can't remember it off the top of my head! Can't wait to see your angels! yeah! emily

beverly... i am taking dexedrine... yes, i am taking speed legally! eeek! this is only day 3....i am still wired but not nearly as bad. i hope to sleep a little better tonight...i will post on it if it is a success...right now, too early to tell. thanks for reading my scoop! emily

jess, i am so glad you updated us. it really sounds to me like you made the best decision...i think you need to be able to eat and at least function a little! so, i hope the zofran does keep taking the edge off of the nausea for you. i just wanted to let you know that i know how carefully you weight everything before making a decision, and i feel confident that you made the right decision for you and baby. do keep us posted whenever you feel up to it... emily

JR... yes, preggie pops rock! i was just eating the "queasy pops" version today (for those of us who aren't pregnant but are nauseaus.) they really do the trick for me. jess...i am getting REALLY worried about you... emily

nina, i much prefer having to go right after dinner too than waiting out that bloat junk. ugh! but, neither is exactly ideal. tearose, i know it was a bit embarrassing for you to share your "evacuation plans!" but that was a pretty good tip...i might try to remember that next time i am clogged up! okay, okay, sorry, this gut stuff can be sooooo all-consuming. how did you ever come up with something like that?? i don't know why, but the gut stuff is really so hard to deal with sometimes...i feel ruled by my bowels. aaargh! emily

herdswoman.... thank you for making me LAUGH OUT LOUD!!!! that was so funny. and yes, just to set the record straight...i still remember the blue light specials at kmart! (i am 29).... my dad's FAVORITE store is kmart---he and my stepmom drive OUT OF TOWN to shop at a kmart! i am not kidding! yeah, he's a little nutty. this post on gluten-intolerance is just at the perfect time to affirm my choice to stay gluten-free. also, as for casein...that is one of the proteins in milk. my doctor at hopkins does not want milk products in ANYTHING...and i mean ANYTHING...he wants even my meds to be lactose-free...and lactose in a binder in almost everything... so, as for being super-careful about food...that's me...it is actually a bit stressful sometimes trying to find stuff to eat! seeing as i am hungry all of the time! i am going to turn in to a grain of rice i think...all i eat is stuff made with rice (who knew that could come up with rice-everything...cookies, milk, frozen treats...whew!) goodnight...and thanks for the laughs. i needed it. later alligator! love, emily