Sunfish

mattsmum - i'd be happy to though it might be a few weeks before it happens. the copy will be on a DVD-R disc so if you're able just make sure you'll be able to play it. i know that DVD players aren't always compatable internationally though i think you should be able to watch it on your computer if all else fails? no need to worry about the postage; it won't be a big package. feel free to PM or email me your address whenever & i'll let you know when i'm actually able to send it out. melissa p.s. i recently found out that i have 2 distant relatives in australia. how i wish i could visit!!

meg - i'm happy to send you a copy if you don't grab morgan's extra first. i'm usually pretty good at figuring out technology/ electronics but just got this new one a few days ago and haven't bothered with the recording at all yet. so no hint yet as to whether it will be a 5 minute or 5 month process to get it going . if you do want the copy from me just PM or email me your address. morgan et al - i do agree about the focus on migraines as it was presented in a way that made it seem integral to dysautonomia/ OI issues. i do get occassional migraines but for me it's pretty much last on my list of issues (which you know very well isn't a short list!). i've been known to say that if migraines were my only issue i'd be in grand shape. NOT b/c can't be terrible but just b/c for me i get them only very rarely. when i do they're bad & i can't do a thing but they're rare enough for me that even though i'm down for the count when they happen they wouldn't limit my ability to hold down most jobs (as i'd only need to use a few sick days a year for them). and i had a dysautonomia diagnosis years before i had ever had a migraine or headache of any sort. but anyway.... all in all i felt the show was pretty well done considering it's trying to summarize a LOT in about 20 minutes (30 minutes minus commercials) and is put together by people who don't know a thing about dysautonomia beyond what they've researched for the show. i'm glad it wasn't "just" about POTS b/c it made me feel like, while the details may differ & while a lot of my issues systemic issues weren't included, that i felt included rather than excluded from the illness being portrayed. i do know that OI is used interchangably with POTS, OI can also be used more broadly for anyone with any type of gravitational issues...which is most everyone with any type of dysautonomia. i know there are some exceptions and/or those for whom orthostatic issues aren't the more predominant, but in general it's the most universal component among the various dysautonomias. obviously things vary in regard to what happens physiologically, but bottom line is that gravity is a problem . so in the end i was satisfied with the program in that i feel like i can show it to people rather than having to hide it. i suppose my expectations were set pretty low but i was hoping for something that wasn't entirely misinformation/ mispresentation. obviously linda's details aren't my own, but i feel the show was done in a way that i can say to family/ friends "that's not me exactly, but it's the club i'm a part of". aside from the million & one things i'm sure we could all suggest for the editing room, the one realistic edit i would have had would have been one general statement that would have at least hinted at the vast array of things that can be affected as well as mentioning the vast spectrum of effect dysautonomia/ OI can have on someone's life (ranging from a minor annoyance to life threatening, with most people falling somewhere in between). but guess no one asked me, eh? maybe next time... melissa

just wondering when your appt is as i'll be there at least once a week for the rest of the month (not always at grubb's office but in the same building). if days/ times coincide it's always fun to put a face to a name. :-)melissa p.s. just a minor clarification that Bev is a Nurse Practitioner (NP) rather than a Physician Assistant (PA). the roles of NPs & PAs are VERY similar, particularly in Ohio (as it differs some from state to state)

i have it on tape too & as soon as i figure out how to use my new DVD recorder/ VCR gizmo i'd be happy to get DVD copies to those who would like one. melissa

the quick update du jour is that i escaped the hospital late yesterday. sorry for the delay in posting but i'm just now feeling like computer-time b/c even though i was doing relatively okay i couldn't get my head/neck positioned comfortably after all the digging it took to get my new gills implanted (i LOVE the gill analogy! i can always count on you all for a grin ). port placement usually takes about 30 minutes. the three tries needed to get mine in took two hours and part of the port had to be threaded through my neck rather than through the more typical chest insertion. in other words the actual port is still in my chest but in addition to the incision just above the port i also have one on my neck. i'm still sore & somewhat lacking in range of motion in around my left head/ neck/ shoulder area but it's improving by the day (already LOADS better) & the pleural/ breathing pain is long gone (thought to be from some combo of small air pockets left over from the procedure and radiating pain from the amount of digging that went on). other than the scar the site where my old port was removed at the start of my hospital stay is all but healed up. heck...with that line on my right upper chest & one of the new incisions as a matching line on the left side it even looks like i have gills! so for now the fishbowl is crisis-free. still a lot of "big issues" in the undercurrents but nothing that can't be avoided for the moment (in a healthy-to-avoid-on-occasion sort of way of course .) melissa

just checking in with a quick update... the blood cultures have thus far been clean, which means i have one set of officially clean cultures (clean for 3-days post blood draw) and another set that are clean thus far and will be "official" tomorrow morning. but while the second set isn't technically "official" yet, my problematic cultures (aka filled with bacteria) usually grow within 24 hours so at this point waiting on the three day mark is just a technicality. as such, my surgery to hopefully place a new port is scheduled for tomorrow morning @ 8. best case scenario i'll then be able to escape wednesday afternoon. if the port can't be placed in the more typical place (upper chest/ under collarbone) there will have to be more discussion/ testing before we'd decide what type of alternate site to try (i.e. back, leg, side...there are more technical names for these locations but i'm trying to create as little confusion in my explanations as possible!). in other words, it would be a separate/ later surgical event. we're obviously praying, hoping, keeping our fingers crossed, etc. that we don't have to embark on that second step, at least not this go around. i also have a whole-body PET scan scheduled for Wednesday morning. it was something that was "on the books" so to speak as an outpatient but since there's no way i can be discharged before wednesday (the only day they are done as it's a mobile unit) we might as well get it done while i'm here. in reality it's not expected to give a lot of info but my pulmonologist came up with it as a "it can't hurt" idea in regard to our neverending search for an infection source. i'm not one to want to overutilize medical resources but since my insurance has okayed it, my situation is SO out there, it's not invasive, and the stakes are pretty high i don't think it's unreasonable to give it a shot. when it was first mentioned insurance approval was doubtful so i decided that if it happened to get approved i'd see it as a green light but would by no means sweat it if they said no. without much effort they said "go" so if nothing else perhaps i'll donate a copy of the results to research (as PET scans are popular these days in neuro research). i know i have a lot to respond to and i'll try to get back to doing so sooner than later but that's the scoop for the here & now. melissa

just a quick update on the nitty-gritty from hospital land (aka saving the deeper stuff for later). yesterday had the port removed & the TEE (transesophageal echocardiogram) so between those two things and the accompanying sedation, a horrific headache come evening, and shoddy pain control i was fairly out of it and/ or in mega levels of pain all day. after a good night of sleep (i'm thankfully someone that - as long as pain is under control & people aren't actively waking me up every hour - can sleep relatively "well" in a hospital.) i'm doing okey dokey today with only minor pain around the site where the port was removed. as expected the TEE was clean (aka no infection hiding out in my heart valves) so now we're just playing waiting game until we can get clean blood cultures. they drew the first post-port-removal set this morning & will draw another tomorrow but they can't be deemed clean until 72 hours after they're drawn so that pretty much puts us in a hold pattern until at least monday. melissa

i'm too exhausted at the moment to write the response that the many thoughtful replies deserve, but for the time being, THANK YOU. today was largely discussions with the various docs involved at the moment (infectious disease, vascular surgery, cardio, anesthesia) and dealing with other logistics but things are on the docket for tomorrow. the only mini-excitements (emphasis on mini) were my continued hypertension and a rash on my back/ neck that i didn't even know i had until i was getting the once over from my admitting doc (infectious disease). though i've had spikes for very short periods of time on rare occasion i've never had sustained hypertension. the numbers are pretty high and the pulse pressure often REALLY wide so it's quite strange and the docs have different thoughts/ feelings regarding what if anything to do about it. it's actually brought some improvement symptom-wise (i.e. sitting time) so my PCP thinks i should enjoy that as complications from high BP are the least of my concerns. my ID doc is a bit more concerned though in terms of the immediate stroke risk yet is scared to medicate it b/c of the likelihood of it swinging the other way. he's "sitting on it" for now while to run kidney tests just to make sure that some of the IV abx haven't caused problems there (not likely b/c my urine output/ color is fine). the rash is likely related to either one of my abx or the infection itself so that's just something to watch as well. it's not uncomfortable in any way and at this point we can't take any abx out of rotation unless a reaction is life-threatening. i have a transesophageal echo of my heart scheduled for 9am (to make sure the continued sepsis hasn't taken up residence in a valve...not probable based on how "well" i am but has to be done). it's not the most pleasant test (think ultrasound wand being stuck down your throat) but certainly not the worst either! i'm then scheduled for the OR late morning to get the port out we've already switched to peripheral IVs. so tomorrow will be fairly full after which it will largely become a waiting game as the surgeons won't even consider taking me back in the OR until we have multiple clean blood cultures. we're going to try for sedation & local anesthetics rather than general for the port removal but between that & the bit of sedation for the echo i doubt i'll be online at all tomorrow. i'll try to check in myself or with someone else to post by the weekend but no worrying allowed if i'm delinquent in doing so . g'night from hospital land, melissa p.s. i did get my website update posted for those interested, though it's largely repetitive for those who read my ramblings here.

welcome. we don't have any type of live chat, but some members do have their usernames for some of the more popular chat utilities (such as yahoo, msn, AIM) listed in their profiles so come people may chat in that way. the following link (which is also at the top of the forum) may be helpful for you as well: http://dinet.ipbhost.com/index.php?showtopic=5555 hope this helps, melissa

hi all - seeing that it's after 2am & i'm just barely keeping my eyes open you're going to get a brief update for the time being. i did want to at least give folks a heads up that i'll be varying degrees of MIA for a bit. after 7 months of not touching my website i have an update ready that i should be able to post there sometime tomorrow from the hospital so for a bit more info feel free to check in there as well (the link is in my signature). but...the short, no frills update is that my blood cultures continue to be positive, i continue to have varying degrees of fevers almost daily, & while the origin is still thought to be GI-related my port is now definitely contaminated as well. we've tried anything & everything for several months now to get me (and my port) infection-free and my body has been coping with the situation (continued bacteremia/ sepsis as well as related lung issues) better than would be expected but in the end the port is having to come out. at that point we'll hopefully be able to get me free of infection - at least for a peroid of time - while using peripheral lines in the hospital. we'll then - again hopefully - be able to place a new port, something that is of great concern due to the amount of scarring/ occlusion in my veins from numerous central lines over the past several years (the reason we tried so hard to hold onto my current port). so - best case scenario - i'll probably be locked up for 5 days or so, which most of you know would be my record for a short hospital stay, but there are a lot of places where we could run into difficulty so there's no way to really know when i'll be able to escape. while port removal/ placement generally isn't a huge deal, the very real possibility that the surgeon won't be able to get a new port placed makes things a bit more ominous since i'm dependent on the port for day-to-day survival. and even if we make it over that hurdle, the expectation of all of my doctors is that a clean port may improve some things for some period of time but sooner or later the sepsis will likely rear it's ugly head again since we haven't been able to eliminate the source within my GI tract. so all in all the situation is WAY more complex, intense, difficult, overwhelming, etc. than the mechanics of this hospital stay. a lot of the issues i'm muddling through are not what most people are willing or able to talk about or even acknowledge. i don't expect everyone here to be able to "get it" or delve into heavy discussions with me but the people in this community have been too much a part of my life over these past years for me not to be open about what is going on with me. to insert my standard disclaimer of sorts (for any newer folk reading or someone stumbling on this in a search down the road) i am NOT anything close the norm in the land of dysautonomia so there is no need to worry about following in my footsteps. no "is that going to happen to me?!" allowed!! but moving on... in short, i'm grappling with the fact that i'm slowly dying. there is a LOT of uncertainty when it comes to any sort of expected timeline (though quite honestly based on some friends/ family i've had with cancer i've seen more incorrect predictions than spot on so i suppose the difference is that i know that i don't know?) but whether it's a matter of months or a matter of years my reality is that i'm going to die before my parents, something that's obviously not easy on their side of the coin either. ironically my good days/ hours in recent months have been in some ways better than they had been in some time, something that has been wonderful but can be hard to mesh with the underlying realities of what's going on in my body. not to mention the comments my doing "better" invites, i.e. someone seeing me at church with some regularity (aka 50% or so...in wheelchair & w/ IVs but overall looking good) after not being able to get there for over a year and her getting all excited about how i'm "better" and "on the road to recovery" when within a span of 48 hours i'm having conversations with several of my doctors about issues related to dying (including one of my docs offering to go with me on any trip i'd want to try to take as long as she has 3-4 wks notice domestic/ more if she needs to get a passport...how cool is that?? particularly as i think she's actually serious.) but anyway... nice "short" update, eh? there's still a lot more on my website (or rather there will be in the next day or so), though it's more in the way of facts/ details & not so much about the deeper stuff, less straight talk about dying at this point, etc. i decided to get the 7 month update task out of the way & keep a more thorough post about the here & now, moving forward, conversations with my doctors, dealing with the reality of dying "sooner than later, but still who knows when", etc separate rather than risking something so huge getting lost. i hadn't really intended on delving into things here on the forum quite so much at the moment either but, well, it's now almost 4 am so my inhibitions are shot, i'm exhausted, & i suppose couldn't figure out how to wrap up my "short update" without giving more of the real scoop since all that's going on with me is so much more than "just" this hospital stay. so there you have it. thank you to all of you who continue to walk alongside me on my journey. i'll try to update myself or via others re: any excitement during the hospital stay but - compared to those i've had the past year or so (aka emergent ICU admissions) - there's no expectation of anything imminently perilous, though obviously whether or not a new port can be placed is a huge deal moving forward. as always any prayers, good thoughts, crossed fingers, fairy dust, harry potter magic, etc are appreciated. i'd probably prefer you stick with the first two (prayers & good thoughts) but the other stuff sounds cute. . and now it's time for my nap...my alarm at 7:30 (for the 9am lock-up, aka admission) is not going to be a pretty picture but eh well. signing off from the fishbowl, a very sleepy melissa

unless something has changed very recently i'm pretty sure the program can't be watched on the internet. i won't guarantee that i can do so for unlimited numbers of people, nor can i guarantee whether it would end up on video versus DVD (as i have a DVD recorder on order as a birthday/ christmas gift but it's not in hand nor have i figured out how to work it yet!) nor can i guarantee any sort of time line with my health status but - with all those disclaimers out of the way - i'd be happy to get copies to people who don't get the discovery health channel. i may be locked up (l'hopital...yes i need to post an update elsewhere) but it would be planned so i can have it scheduled to tape at home while i'm away. i was cable-less for most of my independant living years (with the exception of a few 3month deals that my roomies & i would splurge on for a treat) but my parents now have cable (didn't when i was growing up) so since i've had to move back in with them i get to share. in our area discovery health is part of the basic package (i know it's not everywhere) so particularly if the show is any good i'm happy to do what i can to get it to those who can't otherwise see it. as a non-POTS gal i'll be honest that - without having seen it - i'm potentially glad that it's not "just" about POTS or NCS but more generally OI/ dysautonomia as that doesn't exclude the rarer category i fall into. but that's another story for another day.... i pop in on NDRF very sporadically these days but not at all often so thanks for posting the info here sophia. i be eager to see the program & REALLY hope that they do an okay job in the edit room!! personally i think i'd have a hard time signing on the dotted line for a program about me - health or otherwise - without knowing i'd get to see the edited product before it was shown to the world! melissa

hi michele - i haven't been able to chime in on your other posts, but i was SO happy that your appt with the headache specialist was such a success. and of course sorry that the new med isn't going so well, but glad at least that you have a good doc to work with now in regard to other options as opposed to being left high & dry on your own (as i know you have been at times in the past). but on to the beta blocker & allergy question..... b/c of how my health has changed (not for the better) i don't take any beta blockers now but did for a few years in the past and sm someone with a good number of allergies, though not as many as you deal with. i've also never had a full anaphylactic rxn, though my former allergist said that based on my allergy testing results he sees it as a very real possibility. most of my allergic reactions are in the realm of sniffles, sneezes, congestion, etc. though some hives/ blistering rashes happen for me with a few things as well. but thus far no life or death allergic reactions (knock on wood). b/c of some IV meds i've been on at home i do have an epi pen on hand. most of my allergies are environmental, though there are a few foods & meds i have problems with as well. and, ironically enough, may be adding something to my list as i've had hives since last night...trying to pinpoint now what may be new that could be contributing but who knows. itchy, itchy, itchy to say the least! but i digress... my former allergist (who i'd still have if i hadn't moved 500 miles away) was ideal b/c he was pretty well versed in autonomic dysfunction. he'd shared several patients with dr. rowe, a top autonomic specialist (pediatric) in the years prior to my seeing him & had had numerous conversations with dr. rowe, done a lot of reading, etc, so i was very lucky in that regard to have someone who "got it". when i started seeing him i wasn't on a beta blocker. when i was later started on one he was comfortable with it WITH the stipulation that i absolutely could not continue my allergy shots, the reasoning being that if i were to have a systemic/ severe reaction to a shot the BB would hinder their ability to treat me effectively and in turn, particularly in combination with my already having BP/ HR issues, it could be very dangerous. i was on a low dose of inderal (10mg TID). so...extrapolating a bit in regard to my allergists concerns about betas & shots for me i could see that they would be a concern for someone with more of a tendency/ history of severe allergic reactions. the only time a beta blocker helped me was during the years that tachycardia was a primary issue for me. i had low BP issues then too and could never take a beta without also taking midodrine, but the beta did help me symptomatically a lot during that time. i was taken off of it about a year ago b/c my HR doesn't get as high anymore (aka doesn't bother to compensate) and b/c my BP was consistently too low despite maxing out on midodrine dosing. when i was first started on a beta many years prior to that, at which time i had an NCS diagnosis and rarely had tachy it was a disaster and left me fainting left & right; that was toprol, though seeing that it was over ten years ago i don't recall the dose. so...i've had good & bad beta blocker experiences. as a part of the med trial research i was a part of at vanderbilt they seemed to help me but only WITH midodrine. without i was out cold within seconds. as a sidenote i do get migraines but so intermittently that i only take abortives (not preventives) and can't really comment on whether the betas made any difference when i was taking them. not sure if any of my ramblings are helpful in the decisions you have to make, info your looking for, etc, but figured i'd chime in with anything that might be slightly relevant. i hope you're able to figure out something that helps without hurting!! melissa

regarding stopping florinef, i've been told it should be stopped at least a week before testing but that 2 weeks is better. different docs seem to have slightly different thoughts on this, as well as in regard to whether or not it requires tapering. while it's true that steroids should, as a general rule, be tapered, i have been told by some docs who i trust immensely (autonomic specialists who work with florinef frequently) that depending on one's dose florinef doesn't always require tapering. it was years ago now but when i stopped florinef i was on .2mg daily and stopped without any taper and had no problem. it's a hard call though b/c i think some docs may say "it doesn't matter" solely b/c they don't know better. i had this happen when i was told to stop (but not taper) an SSRI (lexapro) prior to testing several years ago and it was pretty miserable. i had been told simply to stop it as i was on a small dose. i actually never went back on it (b/c we didn't think it was really helping me in the first place) but if i ever have need to i will certainly NOT be stopping cold turkey! but i've digressed.... ultimately what's done is done and, in your case, since it did confirm a diagnosis, i wouldn't worry too much about whether or not things might have been a bit different had you been off of meds for longer. it is a shame that there isn't better consistancy/ a more standardized protocol for the testing but ah well...maybe someday. i do hope your new treatment plan(s) help you feel better & better! melissa

how long were you off of your meds for pre-testing? both have relatively long half-lives & thus need to be out of your system for quite awhile to get accurate test results. also, just as an FYI, florinef is used by some docs for tachycardia without low BP b/c of the theory that tachycardia may be preventing a drop in BP. i'm glad that the plan is only to make one change at a time so that you'll have a better idea of what may be helping/ hurting. atenolol can drop BP for some people so that some do better on it WITH another med to support BP, i.e. florinef, midodrine, etc. melissa

sophia - simple conversion is double the celcius plus 25. it's not 100% accurate but it's very close to give you a general idea, i.e. 8 C is approx. 41 F. hope this helps, melissa

no worries morgan! i didn't think you were suggesting it at all but rather was replying to radha's question re: whether K+ supplementation might help her. melissa

your description reminds me a bit of what i have with pleural (lung related) pain. before i experienced it i thought something lung-related would have to include a cough, congestion, etc but nope...for me it's usually just really nasty pain. breathing makes it worse though it's usually there all of the time to some degree. the first time i had this it was similar in that it woke me up in the middle of the night and was horrific. pain meds i have on hand didn't even touch it. if it persists i would definitely get it checked out. and if it seems to correlate at all with breathing perhaps ask about getting a chest x-ray. melissa

mary - for me it didn't have any relationship to dreams, but i HAVE had success getting treatment for sleep problems. i have sleep apnea & using a BiPap (though initially it was a CPAP has helped me greatly in regard to more solid sleep. sleep studies have been discussed a decent amount on the forum so if you do a search you'll probably come up with some good info. hope this helps, melissa

radha - increasing dietary potassium or getting a bit more in a multivitamin would probably be okay to do on your own, but please be careful as too much potassium can be truly dangerous. if you're concerned about potassium being a factor perhaps asking your doctor to check your levels would be helpful (though i know that for some here, i.e. morgan & ernie, they shift rapidly so that the bloodwork is only part of the story). i also wouldn't completely rule out TMJ as not everyone has pain with it or is aware of any clenching. some have only stiffness, soreness, fatigue, etc. hope you find some relief soon, melissa

if i don't take my meds on schedule i'm non-functional, or rather even less functional than normal. this isn't necessarily the case with every one of my meds, but it is with some that i have to take at least 4 times a day so most of my others are able to be grouped along with those. my med timing usually varies a bit with when i wake up as well and this post is making me realize how lucky i am to, in the midst of everything else, somehow have a pretty darn good internal timer of some sort. when i take my first set of meds i know my next is due 4.5 hrs later (give or take about 15 minutes) and i remember that time and 99% of the time remember to follow through. the fact that i pay the price so highly (to the point of it being dangerous) if i forget is pretty high motivation i suppose, but all in all i think i'm just lucky that i remember that sort of thing pretty well. it didn't used to come quite as naturally but i after ten years i'm getting pretty well "programmed" i suppose. the one thing i have a tendency to forget at times is a nasal spray for my allergies, but honestly i don't think it does anything for me anyway!! i do have my own version of having my most of my daily meds organized. liquids don't do well in pill boxes but i have all of my doses for the day pre-measured into syringes & keep each day in one big plastic zip-loc. currently i have IV antibiotics 4 times a day as well, including smack dab in the middle of the night. my internal timer does NOT work for that time & thus the alarm clock gets set. sadly much of my time/ energy goes into dealing with my meds, IVs, tubes, wires, etc, but in the midst of that i am thankful that my internal timer seems to work better than the rest of my body b/c it'd be tough to find an alarm system with the number of settings i'd need as reminders (currently 10 every 24 hrs!) maybe i should start a reminder business wherein i could call people for their med times. lol. good luck to all figuring out what works best for you, melissa

hi maggy - i'm struggling with constant infection as well but for me it's not something localized but rather sepsis, which is infection in my bloodstream and thus systemic, now causing damage throughout my body. the root cause for me is suspected to be GI-related and yet we haven't been able to pinpoint the specific area and thus are in a bit of a bind to say the least. in your case i think that some of flop's ideas would be very worthwhile for you to inquire about/ pursue if you haven't already. whether you have actual infection or symptoms that seem like an infection is a key piece of info. we all have some level of bacteria in our bladders so some growth on urine cultures is completely normal. you may already know this but thought i'd mention it just in case. if you do in fact have an infection that is resistant to all oral antibiotics IV antibiotics would certainly be worth pursuing & are likely something you could do through home nursing or an outpatient clinic (depending on the regimin/ specific antibiotic). one other thing that came to mind is whether or not you have had any testing done to see if you might be retaining urine on a regular basis. this can be part of dysautonomia for some and can lead to frequent infections b/c the retained urine in essentially a breeding ground for bacteria. you could still be able to urinate & have this problem b/c you could not be fully emptying your bladder (without knowing it & possibly without having the ability to do so). thorough testing for this would generally include something called urodynamic studies but it can also be tested less specifically by having you fully empty your bladder (to your knowledge) and then being catheterized or having an ultrasound to see if anything remains in your bladder. if you haven't already i would highly recommend seeing a urologist, preferably one who works with neurological bladder dysfunctions (many of which fall under the category of neurogenic bladder). hope this helps & that you're able to find some relief soon, melissa

someone else brought this up not too long ago as well. here's the link to the post: http://dinet.ipbhost.com/index.php?showtop...florinef+fridge i haven't taken florinef in years but it was a white scored generic when i took it at times & never had to refrigerate it. i doubt they'd be telling you to do so if there was no merit in it but there may be some flexibility in the directive. all of my meds or liquid (or i have to make them such) so there tend to be more liquids that dictate refrigeration. same with some of the IV meds i'm juggling. considering i'm not always able to get to the fridge myself & currently have to take things more than 9 times a day around the clock i've inquired/ researched extensively on each and the specifics vary greatly. just for example sake, i found out one of my meds only required refrigeration to preserve the flavor! seeing that my J tube doesn't have taste buds, that wasn't something i had to be concerned about it. some others only require refrigeration in the long term, i.e. if going to be stored over 14 days. others can be out without problem for 24 hrs (as long as not in a super hot environment), etc, etc. you get the idea. liquids don't work too well in pill cases but in a similar fashion i have mine in premeasured syringes in daily bags & do so weekly. after finding out the more detailed info re: refrigeration i'm still able to do this with all of my daily meds (other than my IVs). there are some i'm on at times that do need the fridge, but for the most part even my meds that need to stay in the fridge over time can be out for a week which helps immensely with my organization & sanity! i realize this is more than you needed to know about my med regimen but guess i just wanted to encourage you (and others) to research the issue further b/c it may not be a completely black & white issue, i.e. the bottle may need to stay in the fridge but you may be okay to fill up your bedside organizer weekly or at the very least perhaps have a pill there overnight so it's ready for you in the morning. hope this helps, melissa

this is really fascinating to me as this is something i've never had a problem with & - to my knowledge - i have GI issues beyond most others on the board. i may not be able to eat/ drink normally now, but there's not correlation for me with warm/ hot items. but that's not the point. what it makes me think is that it's not a GI issue but rather more related to a POTS profile since most (if not all) who have chimed in with "me too" have this diagnosis? (which i don't and, even when i did, my docs all agreed that i was very different than the more typical POTS person). i know we're all different in many ways but for some reason this particular issue intrigued me. i have major issues with temperature regulation, intolerance to hot & cold temperatures (too hot or too cold can be a quick ticket to my fainting), etc, so it can't be "just" a correlation with that. someday - though it may be long after any of our times here on earth - there will be an answer for this. but in the meantime, as someone who can't eat/ drink more than a bite here or there of anything, i can empathize with the utter frustration of dietary limitations. it downright stinks. melissa

angela - i hope you're feeling better as your body bounces back from it's little jolt of sorts. while i realize this isn't a fix-all by any means, i do hope & pray that it will resolve at least some issues/ symptoms for you, even if just a bit (though of course more would be great!!) and kudos on your persistant determination to get the care & attention you needed & deserved despite being dismissed on more than one occasion. (i've thought that on more than one occasion but not sure if i've ever chimed in to tell you that...i do a lot more reading than replying on the board these days!) melissa

i rarely remember my dreams. this has always been the case for me. one strange one that stuck in my memory bank was a mix of some of my past & present realities in a sort of odd fashion. it was right after a hospital discharge wherein i was brought home my ambulance, a big activitiy for me was getting to the commode next to my bed, etc. but in the dream i was at a pool teaching/ coaching swimming and one of my docs arrived with his son who was on my team/ in my group. i actually DID coach this doc's kid many years back...at a different pool than what was in the dream, but eh well. the odd thing was that in the dream i had also just gotten out of the hospital & had a PICC line in my arm (which was what i had as my IV access at the time), but was obviously a lot more functional. so it was this odd melding of an "if i were healthier" dream & my present reality. nothing really positive or negative, just a bit odd. if i were able i would LOVE to still coach/ teach regardless of my tubes & wires, but not exactly where i'm at...not to mention IVs don't really mix with pools or active children. so that's my "random dream of the day" to share. overall though not many weird dreams for me, or at least not that i remember!! not many not-weird dreams that i remember either though melissa