Sunfish

as others have said, generally speaking POTS & heart disease do NOT go hand in hand. similarly though, as others have also said, there are always exceptions to the rule. some may have heart disease & POTS as independent entities, such that they are just "lucky" & happen to have both (i.e. no relationship between the two). and there may be rare instances, such as in cameron's case, where untreated POTS is thought to contribute to a multiplicity of factors in the etiology of heart disease, but this is VERY rare & not something that someone under a doctor's care for POTS needs to be losing sleep over. while it's obviously not quantifiable evidence, in the years that i have read every single post here on DINET (yes, i'm a compulsive moderator ), cameron is the first person for whom POTS has been connected with heart disease; there are others, some of whom have posted here, who have heart disease, but it's generally seen as unrelated. as a bit of a sidenote to you cameron, if you're reading this, a part of me admires your stubbornness/ tenacity. i probably shouldn't be saying that, and by no means intend to minimize the complications you now have b/c of it, but another VERY stubborn individual a part of me wants to give you a high five for you ability to push through your body's attempts to slow you down. i too have brought on some trouble by my degree of stubbornness over the years, most pointedly needed spine/ neck surgery due to an injury that wouldn't have occurred had i listened to my body a bit more, but while my byline is that my degree of stubbornness & perseverance is both a curse & a blessing, i also believe firmly that, on the balance, its more the latter than the former. i would have called it quits long ago if i didn't have the personality i have so, despite it causing some trouble along the way, i would have missed out on so much of life, and very possibly would have kicked the bucket already, if it weren't for being so stubborn. so, to my fellow stubborn friend, i have to believe that the same stubbornness that may have been your downfall (in terms of the damage to your heart) will also see you through not only that but any other challenges in your life, health-related or otherwise. but back to the question at hand... as an anecdotal example of a VERY healthy heart in the midst of what is classified by the autonomic docs as severe & progressive dysautonomia, i've actually been told that my heart may very well be healthier than many not only in spite of my illness but BECAUSE of it. i'll explain a bit more. in the midst of severe septic shock (i.e. multiple body systems shutting down due to toxins put out by systemic infection), i've had sustained blood pressure & heart rate readings that are often not survivable, particularly by someone weakened by recurrent episodes of severe infection as i was at the time. it was postulated, however, that my body,and specifically my heart, was better prepared to survive the extreme vitals that were happening because of the fact that it (my heart) was stronger by way of already enduring crazy fluctuations in BP & HR for so many years! so in other words, my docs actually felt that my dysautonomia, specifically the HR & BP fluctuations, may have prepared my heart to better deal with episodes of acute illness that may have otherwise killed me. kinda cool, eh? guess i can't say i wish i didn't have dysautonomia, eh? of course i wouldn't have been septic in the first place if it weren't also for the dysautonomia, specifically the GI components, but ah well. just thought the example might be helpful in seeing that, up to a point, fluctuations in BP & HR can be considered a way to strengthen the heart - sort of as exercise would strengthen an athlete - such that some of our dysautonomic hearts may in fact be healthier/ stronger than those of some "healthier" folks out there! obviously this is just a theory, albeit one agreed on by several of my docs, but if nothing else it makes a point. b/c based on testing i've had i know for certain that i don't have heart failure or any type of heart damage, and that's certainly no thanks to any semblance of regular BP &/or HR readings in my day to day life. hope this helps calm any fears people might have, melissa

sorry you're dealing with this & hope you get the attention you need ASAP. and of course that it turns out to be something that can be dealt with relatively easily (& painlessly). you're quite the trooper though & i'm sure your sense of humor will help you deal with whatever happens, something i can definitely relate to (humor being a survival mechanism, that is). good luck, hang in there, & let us know if/ when you'll be having surgery of any sort so we can keep you in our thoughts & prayers... melissa

i get all of the needed B vitamins intravenously on a daily basis as part of my hyperal, aka IV nutrition, but they're only given in moderate amounts rather than the high quantities often contained in supplements. additionally i give myself a B12 shot weekly - 1000mcg - ever since i had a significant deficiency found several years back. just prior to our discovering my B12 deficiency, and largely the reason that we found it, the severity of my sensory neuropathy increased exponentially in that my pins & needles, prickly feelings, burning, etc in my arms/ hands & legs/ feet got much worse than they've ever been quite quickly & to the point that i had trouble typing. once we corrected the deficiency the acute exacerbation of my symptoms calmed down; i still deal with pins & needles, burning, etc, have for years & likely always will, but the B12 deficiency caused the severity of my symptoms to increase quite severely. my deficiency was moderate and wouldn't generally be expected to cause the degree of sensory issues i had but my docs all agreed that since i already had neuropathy i was more sensitive & it acted in a way that was additive such that the deficiency on top of the symptoms i already had "normally" caused the acute flair-up. as such, i suppose one could say that some dysautonomia (or at least me:-)) may be more sensitive to B vitamin (or at least B12) deficiencies. i can't say that the shots i still get make a difference for me one way or the other, particularly now that i get all of my needed values consistently via IV (as i was still eating, or attempting to eat, orally when i was deficient, and was having a lot of trouble with vomiting & likely absorption). that said, it's not hurting, B12 shots are the easiest/ least painful of any shots i've ever had, & they're super cheap....so since there's a chance they might be helping, my docs & i have decided to keep them coming. just my two cents, melissa

these were sent to me & while they aren't anything i haven't read many times over by now they seem to be pretty good summaries so i thought i'd pass them on. unlike wikipedia the site they're posted on has a way that they verify/ substantiate the person who posts things, which i also like. obviously we already know that dr. grubb is legit, but for those who wouldn't know the author it's an added affirmation of accurate content. and, as an added point of interest, like i wrote in the title, dr. g's daughter, who's in her early 20s & very into art, did the illustrations in both, which is kinda neat. On Syncope/ Fainting: http://knol.google.com/k/blair-grubb/synco...zEgg?locale=en# On POTS: http://knol.google.com/k/blair-grubb/postu...0Lsji-N/oPFBfQ# melissa

if you do a search you will find MANY threads on the flu shot as the topic comes up at least once every year. all in all, there doesn't seem to be a consensus as people have varied opinions. the leaning may be a bit toward the side of getting the shot - based on personal belief/ opinion/ experience & doctors' recommendations - but not by much & obviously not scientifically. personally i always get the shot & will continue to do so. same with the pneumonia shot in recent years. unlike most here i have had life-threatening infections as well as recurrent pneumonia & other lung complications, all which add to the danger of having any strain of flu or pneumonia if i were to get it. while the shots don't eliminate the risk they reduce it, and since i've never had a reaction aside from localized discomfort (the pneumonia shot wins the award for producing the sorest arm i'm ever had!) i'll continue to get them. my physicians have all counseled, er...demanded, that i get them as well. hope this helps, melissa

for better or worse, i can add a "me too". it really bothered me, as I feel that's it's dishonest to bill in this way without informing people ahead of time. i've been his patient foralmost 11 years & this only happened once. b/c i have decent insurance the "double billing" was an annoyance but not cost-prohibitive for me. as such, i made one phone call to make sure it wasn't an error (as i initially assumed it was) but as it fell in the middle of several hospital stays for me & my fight for SSDI approval i had more pressing billing, insurance, & paperwork issues & as such, chose to let it go. as much as i wanted to pursue it i've learned that i have to choose my battles at times or i, quite literally, would have no time or energy to do anything in my life that wasn't medical/ health related. it honestly wouldn't surprise me if dr. grubb doesn't even know himself what's happening with the billing. we (my mom & i) were particularly bothered by the double billing as we had waited over 3 hours (during which i'd had to lay down on the floor as i couldn't sit up that long). and to be honest, while we had a decently long appointment (certainly longer than appts with many physicians), it wasn't ridiculously long. for what it's worth i've had longer appointments in the past, and as it was dr. g's last appt of the day a chunk of the time was more chit-chat than substance...not a complaint but something that should NOT permit double billing. i hadn't even considered the affect this sort of thing would have on people paying out of pocket and it really really bothers me. most everyone there has waited a long time for an appointment and is not in good shape health-wise. many are in precarious financial situations. i have no problem with a sliding scale for billing based on how much time someone spends with a doctor but it should be made clear BEFORE the appointment and not as an after-the-fact discovery. not sure what to tell you to do. as i already said i chose not to fight this one, though now that i'm thinking about its affect on others i'm sort of wishing i hadn't let it go. it's obviously something you'll have to make a decision about yourself, but no, you're definitely not the only one that's had it happen. ggggggrrrrrrrrrrr. melissa p.s. i've never gotten billed extra at all from the hospital other than if i've had bloodwork done and, as such, get billed from the lab. i've never had any other testing done in the office though; if your daughter had a tilt table test (or any other testing for that matter) that would definitely be a separate hospital charge but not sure what else would justify a separate charge.

hi ernie - i found a post where nina mentions her watch which she seems to like & which doesn't have a chest strap. it's a mia, but the detailed info is in this post:http://dinet.ipbhost.com/index.php?showtopic=10510&st=0&p=96147entry96147. hope this helps! melissa

i think nina has posted before that she has one without a chest strap....miss mouse?

hi pat - sorry if you thought i was trying to imply that i didn't think you and/or others were paying attention to my ramblings. i was really just trying to emphasize my agreement with the makeup issue (it covering up the pasty white paleness we're speaking of that at least some of us seem to share) while poking fun at my lengthy posting nature. i read every post on the forum & i have NEVER thought for one minute that you're not a good communicator. we all communicate differently, and while i enjoy writing, i actually admire those, including you, who have the ability to chime in with comments that are "short & sweet", ya know? it's something that's in fact very difficult for me and that, at times, would be a nice skill to have! bottom line is that, in my opinion, for what it's worth, i think you communicate just fine! and bravo on making it through my entire post! while i don't have any qualms that i'm an okay writer on most occasions, i do wonder at times if people have the energies to make it through some of my longer ramblings. not something that i take personally by any means but simply an acknowledgment of the fact that longer posts take longer, and in turn more energy, to read. i know when i'm more wiped out physically and/or not at my best cognitively i'll often save longer posts for later and/or skim them over rather than reading them more thoroughly and can only expect that others do the same. sarcastic humor doesn't always come across too well in writing though so i may have miscommunicated myself a bit in the process of trying to give folks at grin. sorry! thanks too for your accolades & encouragement. i don't say it lightly that it means a lot to me as, in the midst of not feeling that i can "do" much at times, i hope that what i have to share in less tangible ways, i.e. through writing, might be my way of "doing", giving, contributing, etc. i feel very strongly, and have been encouraged by others, that i'm still here for a reason and have wondered at times if writing might play a part in that. i need to work on managing my time & energies better so that i write more & make some efforts in "getting it out there", i.e. some publishing opportunities, and your words, along with a few others that have come my way recently, may help nudge me to do that. so thank you. one of my doctors put it to me a few months ago that i "owe it to the world" to write about my experiences, and while her words have stuck with me in a powerful way i'm ashamed to say that i've done very little to act upon them. i love to write & never regret it but, in part b/c once i get going i have trouble exercising restraint, i have difficulty integrating any sort of regular writing into my "schedule". ah well...maybe your words will be the extra little push that i needed. but whether they are or not, thank you for them. last but not least, i COMPLETELY concur with your post re: refusing to let someone ruin your day. i feel exactly the same, and while i have to admit that my emotions don't always follow suit instinctually, what might have ruined my day many years back is now likely to only "ruin" perhaps a few minutes of my time. you explained very well the reasons why there's simply no point, though while you mentioned that your age may be part of the shy behind your wisdom, i'd offer up that it might be just as related, at least for me, to the years i've been dealing with illness. i've talked to people older than you (60s & 70s) who are certainly not as wise when it comes to dealing with illness & interfacing with the world, and most of the time they are individuals for whom illness has only recently entered their day to day reality. that said, i'm sure that some people, regardless of age or time spent with health issues, won't allow themselves to learn or grow or rise above the difficulties of dealing with others or of illness itself just the same as, conversely, there are certainly some younger folks who are fairly new to illness and yet still wise & mature beyond their years. all in all, though, i'm glad that you don't allow others to ruin your day. i'm sure you've found, as have i, that it is a MUCH better way to live, and hope that others who aren't there yet will be able to get to the place where they feel the same way. now, as i've once again proved my incapability of writing a quick post, i'll call it a night. while i'm thinking of it, though, how is work going for you these days? i hope i'm not mixing up work situations with someone else, but are you still working the more regular hours on a schedule that's "easier" - relatively speaking - on your body? i was always amazed at your ability to keep up with the hours you worked previously; that sort of thing is rough on the healthiest person, not to mention someone with health issues! melissa p.s. to any & all - after trashing the possibility of wearing any make up whatsoever for years (other than chapstick!) i decided a year or so ago that i did want to add a bit of color to my pastiness and, as such, have since come up with a super quick routine with products that i love, leave me looking healthier without looking like i'm wearing too much, if any, makeup. in other words the au natural look, which, at least for me, is preferred. if anyone's interested in any suggestions feel free to PM me....it'd be sort of fun to have some non-medical chatter in my inbox! )(and no, i'm not selling anything!!)

ah yes, i forgot to add one of my other hobbies.....playing doctor/ nurse! JK..sort of. seriously though, in regard to how i spend my time, though it's not something i'd recommend as an enjoyable hobby for anyone to take up, is taking care of all of my own medical needs. it literally takes me upwards of 2 hours each day, and sometimes more (though not all at once), to do what i need with my meds, IVs, dressings, various tubes, etc to keep myself functioning to the greatest extent that i can, out of the hospital & doctors offices as much as i can, etc. for instance i can't ever just "pop pills" to take my meds but have to put any meds into my J tube so that's an ordeal of its own several times a day. and once a week my shower is my big event for the day as the whole process is 3 to 4 hours from start to finish, after which i'm done for the day. i don't take that long IN the shower, but by the time i do the surrounding medical things that aren't optional that's how long the whole thing takes. so yeah..."playing doctor/ nurse" on myself is probably my most time consuming hobby of all, though the one i'd be most willing to give up if given the option. that said, i'm very thankful to be able to do so much of my own care myself so really should not be complaining. along the same lines, another one of my favorite hobbies - NOT - is spending time on the phone do deal with various issues related to insurance, disability, doctors, billing, etc. not fun but necessary none the less. even worse than the health stuff itself if i'm honest. but ah well. again i'm lucky to be able to do it (most of the time). but anyway..i just couldn't resist adding those hobbies on lest anyone think i'm enjoying myself too much!! karen, i hope your picnic goes well & that you are able to enjoy yourself in spite of the parts that are, by their very nature (questions, not feeling your best, etc) difficult. alicia, i'm not sure who your question was directed toward re: chores & whatnot, but i'll give a quick answer in case it was to me..since i was the one who wrote out the essay of activities! much to my dislike, i can't do much of anything when it comes to chores anymore b/c of my physical limitations and, for that very reason, had to move back in with my parents after living independently for 9 years. it royally stinks and despite some people thinking i'm lucky to have all that time to do "anything i'd like", i would give ANYTHING, including all of my extracurricular pursuits, so be able to live on my own, do my own laundry, clean my own room, etc. i don't have to worry about cooking b/c, pathetically enough, i can't eat at all. if i could eat i wouldn't be able to keep up with food prep for myself in a normal fashion but could do a bit here & there, could warm stuff up, etc, though at certain times in the past few years i wouldn't have been able to do that. as for cleaning, laundry, etc., i can put away a few items, i could throw a few items in the wash, etc, but i could never do anything fully or to completion. i suppose if i had a wheelchair accessible set-up i'd be able to do a bit more but that's not the case & considering i have to crawl up the steps myself i can't carry laundry with me! but that's here no there. if the bathroom gets icky i have wipes that i'll use for inbetween touch ups though can't handle the full cleaning myself as i can't stay upright that long without fainting. believe it or not i have had dreams about being able to cook full meals (and eat them!), cleaning a bathroom, vaccuuming, dusting, doing laundry, changing my own bed, etc. i kid you not. i manage to make my own bed creatively while i'm still sitting in & then on it...not necessarily the prettiest thing but ah well. i'm a clean/ neat freak by nature & it's frustrating to be dependent on other's whims for cleaning, i.e. i can't hardly complain about dust-balls when they're helping me out, ya know? but i digress.... i DO know that, when you're not in the best of health & still able to do chores to some degree that it takes TONS out of you & leaves you ragged for anything else. i remember well, and i'm sure that you're thinking i'm nuts to wish i was back in that position but i do . b/c the ability to do things on your own, no matter how difficult, is worth more than any exhaustion that is brought on by doing so. i hope my answer reply doesn't come across as rude or flippant as that isn't my intent. i suppose i'm trying to make a point, but definitely not trying to be unkind in the process. i do have a bit of a sore spot though when it comes to people thinking i'm "lucky" to be able to just enjoy hobbies all day long when that is far from my reality. i don't think you were really saying that, but just last week someone told me how lucky i am to be able to "just lay around & read all the time without having to work" and i hear similar things fairly regularly. i'm not one to complain, but i'm also not keen on people thinking my life is equivalent to sitting around eating bon-bons & being spoon fed, ya know? so sorry if i came off a bit harsh... okay...shutting up now.... melissa, who is going to sleep to dream about vaccuuming...

ggggggggrrrrrrrrrrrrrrr. so sorry to hear things have been so rough for you but glad that you're at least more comfortable now than you were before the ER visit. keeping you in my thoughts & prayers.... melissa sheridan, good to "see" you!

yep, i agree about the make-up issue. i actually mentioned the same thing (about a bit of make-up likely causing more "you look good" comments) in my ramblings above, but writing so much tends to keep people from actually reading my posts so your got more to the point! well done:-) melissa (the other one)

pat et al - i'm not a potsie, but i'm definitely pale, and turn various shades of paler &/or gray &/or green at times related to exacerbations of various things in my body. i have dark circles under/ around my eyes as well that vary in degree/ prevalence but are always there no matter how much sleep i've had. i never wear much make-up, but when i do brighten up my eyes & put a little color on my face (we're talking a 5-7 minute job max) i've wondered if the fact that i'm masking my paleness & dark eyes backfires in that it actually elicits more of the "you look great" comments. at times, most often related to nutritional issues for me (or lack there of) &/or lower weights, my face will also look sort of sunken in, but i've still gotten many a "you look good" comments from people who aren't close to me. that said, none of us are fainting or about to faint 24/7 (though, yes, i realize that some feel this way!) and many, if not most people aren't particularly observant so i don't think that people getting comments of "you don't look sick" means that they necessarily have the most robust coloring, particularly just prior to a faint. my closer friends & family tend to be able to read my coloring better than random "people on the street" and can often tell if/ when i'm in worse shape. by mentioning all of my "extras" (IVs, tubes, wheelchair, etc) in my earlier post, however, i was trying to emphasize the point that some people are going to make the "you look good" comments no matter how much evidence there may be to the contrary, be it IVs, wheelchair, ghostly paleness, or anything else. so i'm pretty sure that most of us who are chiming in here with "me toos" aren't saying that we don't get pale. in thinking things over myself as well as gleaning from the experiences of others over the years (both those giving & hearing the comments), there seem to be several different etiologies to the "you look good" comments that so many of us hear and, quite often, find frustrating &/or invalidating. by "you look good" i'm referencing any such similar statements of "you don't look sick" & the like. for some that make the comments they may be trying to say, in fact, that they don't think we look sick in a very matter-of-fact way, though for us we tend to assume emotionally that they're trying to tell us we aren't or can't be sick. while i'm sure there are some people who are trying to tell someone that they aren't actually ill, i genuinely believe that MOST people aren't trying to be judgmental but just observational or even complimentary. i've heard many "commenters" articulate that they genuinely think they're giving a comment; these people are often shocked to find out that most people with invisible illnesses detest such "compliments". along similar lines, some people's "you look good" comments are intended as compliments in contrast to times that they've seen the person not looking so good. earlier this summer i had an aunt (who happens to be a nurse) overhear a conversation i was having with one of my cousins, a new nurse who was particularly interested in asking me about some of my health issues. in hearing us talk about the blessing & curse of "looking good", she interrupted to let me know that when she'd told me earlier that i "looked good", it was only b/c she had seen me the night before & thought that i'd then looked horrible, and was so happy that i was, at least in some way, having a better day! hearing the "full story" changed my brushing off another one of those "you look good" comments (that make me wonder if people have any clue what i deal with & how i feel) to realizing that my aunt had been observant enough to notice what a rough time i had been having the night before. a totally different meaning to the same comment, & one i'm glad to have gained insight on...not so much b/c of that particular person's comment but b/c it reminded me that the infamous "you look good" comments may, in many instances, be a matter of relativity (similar to when one of my ICU nurses saw me a week later, still very ill & in critical care, & told me how excited she was to see me "looking so good". obviously there was no doubt that i was ill...i just looked so much better than i had when my life had been on the line days before.) if you think about it, we probably wouldn't be much happier if, on a regular basis, people told us that we looked like crap, looked horrible, looked really sick, etc. what it is most of us do want, if i may hazard to guess, is validation that we're sick &/or acknowledgment that we may not feel half as good as we look. ultimately, though it's probably wise for us to realize & then remember that most, if not all of the people who are doling out the "you don't look sick" and/or "you look good" comments aren't thinking or implying that they don't think we're ill; they're most likely just making an observation, lamely filling empty conversational space, or trying to pay a compliment. okay...enough ramblings for me for the night. i seem to be on a bit of a soapbox spree (if you're wondering what i mean, check out last night's "i'm never bored" post!) melissa

congrats on your pregnancy, as well as your upcoming wedding! i'm sorry that i don't have any answer for your specific question, but i still wanted to add my congrats, as well as my empathy for all the nausea you're dealing with. a nursing student (and friend) who used to work for me struggled with hyperemesis gravidarum during the first part of her pregnancy, actually just about this time last year, which i know it was very tough on her, and i deal with nausea to varying degrees on a chronic basis, so i know how not fun it is! trying to keep a sense of humor in the midst of icky health issues we were both dealing with, we would laugh about the irony of the fact that i had hired her to help with things related to my being on IVs for my nutrition & hydration (organizing supplies & meds, moving equipment, etc) so that when she then ended up having to utilize some of the same things herself she was already familiar with things. sort of bad humor, but true...she knew about all of the nausea meds, about having a PICC line, etc. i'm glad to hear that your nausea seems to be letting up at least a bit & hope that it remains that way (better) if not entirely gone moving forward. nausea is bad enough to deal with at anytime, and i can't imagine trying to plan/ have/ enjoy a wedding with it! i can ensure you that my friend, despite having what was considered a pretty severe case of HG, had a relatively easy pregnancy & birth in every other way, and now has a beautiful healthy baby! regarding your question about medications, i do think the fact that both of your doctors have the same opinion - that you should stay on them - carries some weight. obviously it's a decision that you have to make & feel comfortable with yourself, but at least you don't have different doctors telling you opposite things! i'm sure you can't help but be concerned about the mention of the cleft lip risk, but i'd be curious to know what kind of chances the doc was referring to. of course statistics mean only so much when it comes to your child, but might you be able to ask the doctor who mentioned it to you for a bit more information? like is the chance something that he feels is significant, or is it one of those ridiculously unlikely things such as the release forms that are filled out when someone has surgery wherein they have to inform you that there's a risk of them cutting your arm off when you're having surgery on your nose? i don't mean to make light of something that i'm sure is a huge decision for you...just trying to show what i mean by something that's extremely unlikely to the point that it's almost impossible versus something that's a very real possibility. i don't think it's unreasonable for you to try to get in touch with the doctor to follow up on the question so that you can feel better about your decision. you could also ask a pharmacist if they have any information that would help you understand the risk more clearly; while s/he obviously can't comment on your specific situation, the right pharmacist should be able to give some input about his/her experience/ knowledge about the use of florinef in pregnant women. the only other thing that comes to mind for me regarding the medication question is that florinef is a first-line treatment for those with addison's disease. i know that women with addison's aren't, by having that diagnosis in particular, prohibited from having children and i also know that people with full-blown addison's aren't able to simply take a break from their medications without incurring complications that would certainly be harmful/ dangerous for a pregnancy. as such - and this is only me extrapolating and NOT any official medical information - it stands to reason that women with addison's would likely take florinef throughout their pregnancy, which leaves me thinking that the risk, while there, might not be too incredibly great? and, as i'm sure your doctors (and you) have taken into account, going off of medications that improve your overall health & functioning is obviously not without risk in & of itself. but anyway...not sure that my thoughts are particularly helpful but i do wish you the best with your decision...both that you feel good about the decision you make & that things work out wonderfully with your health & the little one growing inside of you regardless of what you decide. enjoy your wedding this weekend too. what an exciting time in your life....new hubby & new baby on the way! i certainly hope & pray that you are blessed with better health that you could even hope for in the coming weeks & months so that you're able to enjoy everything to its fullest. if you have a chance i'm sure we'd all love to see pictures of both events! good luck! melissa

it's great to see that he's making use of his celebrity to give back, and a quick perusal of the links is encouraging as the posted info seems to be accurate and pretty thorough as far as presenting dysautonomia to those who wouldn't otherwise be familiar with it. thanks for sharing... melissa

hope you're resting & recovering well, hopefully at home by now as well! take it easy & let us know how you're doing, even if just a one line "i'm hanging in", when you're able. keeping you (& your new accessory!) in my thoughts & prayers, melissa

lol...i couldn't help but chime in flop b/c i did the same thing with pillows at the store a few weeks ago flop!!! but i think i managed to carry 6 or 7....had them on my lap, between my legs (they were in a bag), & hanging on the back of my chair. it must have looked hilarious! melissa

yeah, i lost count about 10 years ago. i'm in a wheelchair out of the house, have IVs running all of the time that hang on the back of my chair, & have a tube that drains from my stomach and people still tell me that i don't like sick, that i look great, etc. on one hand it's true that i DO look much better than i have at some points in the past few years, i.e. when my weight is down more, when i'm more malnourished, when i'm in the hospital or just have gotten out, etc. but it's still frustrating. if people are saying it to me though with all of my "accessories" they're going to keep saying it. so, as hard as it may be, it's one of those things you need to develop a thick skin about. for friends & family that are an important part of your life it may be worth explaining your situation to them but for those you just see in passing it may not be worth the energy. like flop suggested, there are short comments that can be good to use as a response without having to go into a lengthy discussion. i sometimes say similar things but it depends on the situation. hang in there, melissa

p.p.s. my current port is in the exact same place as yours...we're port pals

hi joy - sorry to just now chime in...for some reason i missed your post earlier. i'm one of the few other people with a port, and my heart goes out to you as the placements (i've had 2) and the days after were definitely pretty uncomfortable (to put it mildly!) the pain you're having definitely isn't something that's standard, but it's also not unheard of. if you really can't breath then obviously you need to go to the ER. if you're managing okay though & "just" can't take a deep breath without pain, and my chiming in with a "been there, done that" helps, you might be able to stick it out. the fact that your x-ray post-op was clear does mean a lot. after my last port placement i had a similar situation to what you're describing. the pain was HORRIFIC with trying to breath, so i am NOT minimize what you're feeling at all, but it eventually subsided. i was still in the hospital as my port was placed during an admission, and while they did do an extra x-ray just to double check me, things were okay in that regard. what was explained to me was that during the procedure air pockets can form that than be extremely painful as they work themselves out. they are not in any way dangerous & pretty much just get absorbed, but that doesn't mean they hurt any less!! i didn't have this problem with my first port, but my second port also had with it the difficulty of a very difficult placement requiring multiple incisions & several hours to complete so i more than made up for it. i suppose i sort of blamed the "air pocket problem" on the difficultly of my placement, the length of my surgery, etc, but no one actually said that was the reason so i'd guess that you're experiencing the same thing. i didn't have any anxiety per se, but my threshold for what it takes to make me anxious is pretty extreme; i can imagine though that the pain i was feeling & the inability to breath deeply could easily make one anxious. i do remember being very unhappy at the lack of pain control i was receiving (until that was taken care of) & the fact that the amount of pain i was in was keeping me from being able to sleep at all after i'd been up since early morning (when the surgery was). part of the issue with my sleeping was that i couldn't tolerate keeping my BiPAP on, something i can't sleep without, b/c the air it pushed into my lungs forced a deeper breath than i could tolerate. again, obviously you have to make the decision that you're comfortable with. i'm someone who doesn't go to the ER/ hospital unless things are horrifically over-the-top (i.e. i haven't gone to an ER without being admitted to the ICU or critical care in years); i don't follow the general "if ______, the go to the ER" rules b/c with my health situation i would be there ridiculously often & thankfully know myself (& have things set up with my doctors) well enough that we can manage many things at home. i by no means though want to be the one who told you NOT to go to the hospital if that's what you should do. what i can do is tell you the experience that i had. i too am on pain meds regularly, and know that my typical meds did NOTHING to take care of the pain i had post-op after getting my port placed. the way pain meds work in your body mean that meds your body is used to day-to-day have little to no effectiveness when it comes to an acute procedure. your surgeon may have had some appreciation of this since he gave you an addition prescription, but based on my understanding & experience with the meds you're on (& conversations i've had with my doctor), the percocet you were given as your extra pain med isn't very much at all taking into consideration the dose of oxy your body is already used to & thus the tolerance for such meds that your body has. percocet is oxy combined with acetominophen, and adding only one sixteenth of what your body gets daily to begin with is a pretty small amount for post-op pain. your surgeon may have meant well, but unfortunately many/ most docs aren't savvy at prescribing meds for those on long-term narcotics. i know it took quite an increase in meds, at that time IV morphine, to get me to the point where i was nowhere near pain-free but able to at least get some sleep that night after surgery. if you're reading this & still home hanging in there, i can tell you that things did improve to the point that, in regard to the breathing-related pain, things were almost entirely better by the next day. i still had the more typical post-op pain, which for me was more than the norm (b/c of the complicated placement), but the difficulty & pain with breathing was almost gone. hang in there! melissa p.s. out of curiousity, if you don't mind, what did you have the port placed for? b/c of bad veins for intermittent blood work? for regular IVs of some sort? if you want/ need any info with the port moving forward feel free to track me down....as an EMT i'm sure you're at an advantage starting out, but i'm happy to share anything i've figured out along the way

for me stimulant meds help a lot. currently i use the daytrana patch, though i used to use concerta successfully in the past. both of these are in the ritalin family, as is adderall (which didn't work for me & gave me intolerable side effects). as is the case with any med, these don't work for everyone. for some people they don't do anything - good or bad - and for others the side effects outweigh any benefit. for me i haven't had any negatives with daytrana other than a bit of skin irritation (very minimal) and had no trouble with the concerta (just stopped being effective, most likely due to my GI tract not being able to handle extended-release meds of any type). for some these meds add to issues of anxiety, something i've never had a problem with; i think this is more likely for those who already have the problem such that most docs probably wouldn't suggest them for those already dealing with an issue that's likely to be accentuated. in addition to the supplement ernie mentioned, provigil is another med that helps some in this area, as well as with fatigue in general. it's often tough to get approved via insurance, and as such not usually tried first. also, in a more general sense, i've always found that, the better my hypotension is controlled, the better my brain fog is. as such, as times that we've increased my dose of midodrine, my cognitive functioning is usually better than it was prior to the adjustment. along the same lines, my brain fog is almost always (if not always) directly related to my overall physical functioning, most specifically fatigue, blood pressure/ heart rate issues, & pain. as such, the better things are controlled overall the better i am cognitively & the more exhausted i am physically the more foggy i am cognitively. hope this helps, melissa

hi karen - i have a type of progressive autonomic failure myself, though i suppose that's not so relevant to your question as is the ability to keep oneself occupied in the midst of physical limitations. i am the QUEEN of entertaining myself. i can honestly say that i have never been bored in my entire life, and that includes months in hospitals, months bedridden, years being unable to get out of the house often, etc. this does NOT mean that i don't miss terribly many of the more active things that i'm no longer able to do and once loved, but not once have i felt bored or unable to keep myself busy; quite the opposite, no matter what my health limitations i always feel as if i don't have enough hours in a day to do all that i'd like, even if just to live, to be, to exist, etc. i am one who likes to write (one of the many things i don't have enough time to do as much as i'd like) and i have literally written about wishing that i didn't have to ever sleep at night, or at least wishing that an hour of sleep would suffice as if it were the 12 or 14 i do best with. i've had fleeting thoughts of feeling as if sleep is a waste of time for many years but having come perilously close to losing my life on more than one occasion in the past few years and knowing that my prognosis comes with a life expectancy that's significantly shorter than "normal" my thoughts & feelings on the subject (sleeping being a waste that is) have only increased exponentially. there's simply too much to do, to learn , to enjoy, to take in, to appreciate, etc....no matter what our limitations may or may not be. i'm not trying to be all pollyanna-ish - i DEFINITELY struggle with & get frustrated by my limitations and the MANY things i cannot do - but i guess i'm just trying to encourage you by letting you know that i have zero trouble entertaining myself no matter what my level of limitation; though i'm able to get out more now that i have been at some other times in the past few years, i'm blessed in that i seem to be wired without a bored gene b/c even when literally stuck in bed for months i've never felt bored. i know that it's something others struggle with though so if there's any way i can help with ideas & brainstorming of my busy-making "stuff" at ANY level of functioning, i'm happy to do so. before listing some ideas though, i also want to say that i'm a big proponent of the things i'm doing with my time, or perhaps more accurately the life i'm living, having meaning; i'm not into "just surviving" or keeping myself busy solely to pass the time in order to get through one day only to start another. i believe firmly that living should be, and is, full of much more meaning than that, something that i know can be a struggle for those whose lives are frought with physical limitations, particularly when these limitations mean that the person can't work, can't "do" other things for others or even for oneself...be it housework or cooking or caring for children or anything else. it's often these sorts of "doing" that we - that our society - places the most meaning on for value, but they're not the only things that have value, nor are they the only types of "doing" that bring meaning to our lives &/or the lives of those around us. i know you didn't ask for a lecture, so perhaps i should apologize for stepping up onto a soapbox, but in thinking about the post a lot of these things, and the ways i've struggled with redefining my life in recent years, surfaced for me & i felt the need to share. perhaps they'll help someone else & perhaps they won't, but i i'm guessing that i'm not the only one who has had to redefine what it is to "do" in a life that's much different than how most others live (and how we ourselves once lived). that said, i do NOT mean that everything we do to fill our time needs to be deeply meaningful in a profound way! relaxation is vital to good health, as is laughter, so these & other things that may seem to not equate to "doing" anything are still full of their own meaning & usefulness b/c they help us to be the best we can be, to do other things in the best way we can, to recharge & refuel our bodies & minds & spirits & souls. i guess what i'm trying to say though, seemingly not at all effectively at the moment, is that no one needs to settle for just "keeping busy" in a way that doesn't have meaning for them &/or for those around them...something that i suppose is equally true for anyone & everyone, regardless of whether their health would be qualified as perfect or horribly unwell. ah well. i knew what i was trying to say...actually saying it seems to have turned in to something else all together. moving on.... as for actual ideas, others have already mentioned some that would definitely top my list. first and foremost, i cannot imagine life without my laptop. from its instrumental role in helping me to finish college some years back to keeping me connected to the outside world during the times in the past few years that i've been relegated to home or hospital or even bed, i could probably write an essay on the many things my computer lets me do &/or helps me with, including but not limited to keeping in touch with family & friends around the world, connecting with others struggling with similar issues (i.e. DINET), researching everything from current events to how to keep my orchid & bonsai alive, managing my finances, organizing & listening to photos & music, watching movies & television shows, creating gifts (photo items & CD mixes), maintaining my website (sort of...i'm WAY behind), communicating with some of my medical team, shopping for anything from boring (but needed) toiletries & medical supplies to electronics, clothes, & gifts (retail therapy!!), reserving & renewing library books, renting movies, volunteering online (i.e. DINET, presidential campaign), playing games, etc. i'm sure you more than get the picture that i'm pretty keen on my laptop and all that it allows me to do a lot while reclined or lying down almost entirely flat. but i'll move on... despite my love affair with my laptop, i don't spend all of my time on the computer nor would i advocate that for anyone. i haven't been able to to stand for any substantial period of time for years so none of my activities include standing (other than perhaps getting up to get something that's close by, something that i do on my own when able but that others have done for me at times when i literally am bedridden). i've had times when i couldn't sit upright for more than a few minutes at a time wherein now, on a good day, i can sit upright for several hours if my feet are elevated; some of the things i'm mentioning would be tough to do entirely flat and aren't things i did during times that i couldn't be at least semi-reclined up for 20 minutes or so, but it doesn't sound like you're limited to being entirely flat so pretty much all of the ideas should be doable for you, tough my definition of "doable" includes some creativity at times, i.e. laying craft items out on the floor or on my bed around me while i'm semi-reclined with a tray next to me or on my lap rather than sitting up straight at a table (in the past i've also sat on the floor & used a coffee table as a work surface; it still requires sitting up but is at least better for keeping legs elevated; though the same thing can be done by propping legs up on a second chair at a regular table the floor has often worked better for me). having a handful a different size pillows available can go a long way for propping yourself up in or on one's bed, the floor, or in a recliner as well, which helps one to have a wider variety of options when trying to do different types of activities. as dawn mentioned a clipboard is useful too...and for more than "just" writing on it. i also invested recently in a nice lap-desk type thing. i've had a hard tray with folding legs for a long while that serves as my medical "table" for my IVs/ sterile procedures from bed and has been great for some crafty activities as well, but my new one is one of those "desks" that's hard on top & soft underneath & i'm loving it! mine has a fairly large surface, a light, & storage inside, but they come in all varieties & with a wide range of purposes in mind. some are tailored to dissipate the heat put out by a laptop, others to hold up a book or magazine, etc., but most can be used for more than solely their advertised purpose. and since i'm already on the topic of "helpful accessories for living a life reclined" (do i hear a book title?!) i'll also mention a cool "space pen" that's been my saving grace at times that i've not even been able to stay reclined for any significant period. i first got it years back when i coached swimming b/c it could write when wet, but the reason i'm mentioning it now & why i've enjoyed it in more recent years is the fact that it can write in any position, i.e. upside down, such that no matter what position you're in the ink won't get moody on you. and while more costly than the pens i usually use (i.e. ones from drug reps!) it wasn't too expensive & has definitely been worth it. others have mentioned shopping online, making cards (things categorized as "scrapbooking supplies" are great for this), crocheting, writing, sewing, latch-hook rug hooking, and books on tape. i do a large percentage of my shopping online, and for a wide variety of things. i can get out now some but if i went out shopping for all my necessities (toiletries, etc) i would never be able to get out to go anywhere else so i like taking care of those more boring items online so that i can use my "going out energies" for things that are a bit more exciting than buying toothpaste. and while my family could (and sometimes does) pick things up for me at the store, it's sometimes nice to have the independence of doing it myself via the computer. i will also buy things i'm not sure about that can be returned to a local store; at a point when i couldn't leave my house at all & was really wanting a pair of jeans that fit me, i bought around a dozen pairs online so that i could try them on as i was able and my mom could then return them...not something i'd suggest doing to family members often, nor without asking them in advance, but a method that's allowed me to fulfill my shopping "need" at times when it couldn't have happened any other way. if you're savvy you can quite often find deals for free shopping and/or other discounts at many online stores, and as i mentioned many (though not all) online retailers that also have local stores allow things to be returned to the stores themselves which eliminates having to pay for return shipping. i used to shop that way even back when i was working since i had little extra energy to spend time at the store; i'd buy enough online to qualify for free shipping, try everything on in the comfort of my own room, then return the rejects in a 10 minute trip to the store that otherwise might have been 2 hours. some retailers also have opportunities for free shipping not only for you purchase(s) but for returns as well. in addition to the "retail therapy" element of shopping online, the ownership over my own purchasing decisions, gift buying, etc has also allowed me to maintain a little sliver of independence that, as least for me, is really valuable. it is of course important to be smart with your online shopping, or any shopping for that matter, as i know that there are times that i could easily go overboard and buy much more than i need and than my budget allows. done wisely, however, it can be great in more ways that one. i hadn't really thought it through so much before writing this right now, but in hindsight it's not a stretch to say that it's had a positive impact on my quality of life. but enough about that...i seem to be having no trouble rambling on about just about anything tonight, eh?! i'm also a crocheter, and am hoping to learn to knit soon as well. most of the crocheting i do is pretty simple, such that one i get going it doesn't require much focus on a pattern and, as such, doesn't require that i'm as "on" health wise as something more complex might and/or allows me to do something else at the same time (watch TV or movie, listen to music, etc). recently i've been making a lot of baby blankets; my friends seem to be on a roll having babies & i love homemade gifts (both giving them & receiving them), so two things are accomplished at once. some of the yarns available now can make the simplest item quite impressive, so if picking up a crochet hook again sounds appealing to you it might be something you enjoy & could use as a way to make some holiday gifts for friends & family. on the topic of crafts, there are ENDLESS options that could easily occupy you for hours on end. the key is probably to find what is most appealing to you; while anything will take a bit more effort initially, there's no point forcing yourself through something that doesn't peak your interest. i'm pretty into beading, as are some others on the forum. last year i made book thongs for all of my family & friends, which are essentially a string with beads on each end that lay in a book with the beaded ends sticking out to serve as a bookmark; they're easy, relatively inexpensive, don't have to fit the person (like jewelry), work for guys & gals, & can be very personalized (via charm on the end & colors used). i received one from a friend around this time last year (purchased from a bookstore), decided i could make them myself, & off i went for the holiday season. now, after not touching my beads for years, i'm back into making jewelry too and have actually had several people offer to buy things from me; in addition to beading i'm playing with some wireworking as well, which is essentially using a special type of plier to bend thin wire into jewelry. while any or all of the stuff can become very expensive if one gets carried away, it certainly doesn't have to be. and if you can't or don't want to spend your energies at a store, anything you might need can be found online and/or through a catalog. as an expansion to the beading idea, some on the forum have made specialized medical ID bracelets with their own beadwork. in the realm of yarn, felting is something that's pretty popular these days, though not something i've tried yet myself (on my ever expanding to do list!). using paper, there's the already-mentioned cardmaking, scrapbooking (anything from a past trip to a pet to a family member to a holiday), something called quilling (essentially rolling tiny pieces of paper up into little scrolls to make various designs; could be used with cardmaking or for anything from making ornaments, decorations, etc), and probably other things i'm not thinking of at the moment. to round out craft ideas, there are things like calligraphy that you could get a book to help you learn. i have zero talent when it comes to drawing & painting on canvases, but if it's something that appeals to you it can definitely be set up to do from a reclined position. i have done some craft-type painting of objects (boxes, trays, etc) combined with decoupage to make personalized gifts with sentimental items (an invitation, photo, etc). i've painted/decorated clay pots in the past as well. there are loads of little kits you can buy for fairly small amounts, particularly if you catch them on sale, designed to get you started on any number of various crafty pursuits. just last week i bought one that has all i need to make several little bags/ pouches out of cute-colored felt & black string...sort of an elementary sewing pursuit i suppose (it was only $5 & the colors grabbed me!), but there are loads of similar things available these days that might spark your interest in something. i'm sure there are still many other things i'm not mentioning in the craft department, but i'm sure you get the idea! in other departments, i enjoy sudoku. there are several card games that can be played solitaire, both with a traditional deck of cards and specialized games. it definitely requires that you be "on" cognitively, but one of my favorites is called "SET" and can be played alone or with any number of other people. i'm not a video game person generally, though there are obviously endless options of that type of thing; i do enjoy tetris & have thought about finding a handheld version though am afraid it might end up eating time that i'd really rather use for more useful pursuits! (i wish i could rent a Wii somewhere for a week or so; it's too much of an investment for me to consider purchasing but i'd love to try it out!) there are a number of games that you can play on the computer though, online or otherwise, and many are free. i tend to like things that challenge my mind & think some DINET members have mentioned playing nintendo's "brain age" though it's not something i've tried myself. when it comes to reading, i've had periods up to 8 months or so when i couldn't read at all b/c of where i was at health-wise, so definitely understand that it's not always an option. i LOVE to read though so soak it up when i can & have done what i can to figure out anything that might help me to do so more. obviously we're all different, but i know that sometimes when i couldn't focus on a book i could still flip though a magazine or a book that wasn't a "straight read", i.e. a book with pictures & captions mixed in with some text, cartoons:-), etc.. sometimes larger print also helps me to be able to read longer, and the biggest factor for me is my position. i can't ever read for long if i'm sitting up, but on a good day (during periods when i can read) i can read much longer if i'm lying down (almost entirely flat). i've definitely used books on tapes at times too, though i seem to have trouble at times concentrating. the quality of the reading definitely factors in, but sometimes i just can't concentrate no matter what. at times it's better if i do two things at once, i.e. a simple craft project + a book on tape...not sure why doing 2 items makes it easier to concentrate but it does! for some reason i've found that books read by the author tend to be read well, and the harry potter books are read AMAZINGLY....you almost feel like you're watching a movie! i haven't listened to loads of the books on tape so i'm sure there are many others that are great too, but they're definitely not all equal. and whether it's books or books on tape or magazines or how-to books (i.e. on any of the crafts that i rambled on about earlier) or CDs or DVDs the library is a GREAT resource. i may be spoiled with a particularly wonderful library system where i live, but most libraries should have a good number of resources available for no cost (or sometimes a very minimal cost for some things, i.e. new release movies). if getting out is (or becomes) a problem, most libraries have home delivery services too; at times they are advertised as being for seniors but if one exists it's available for anyone who has a hard time getting out. you don't have to be 100% homebound either to use the service; i mistakingly thought that myself but after calling several times to ask for extra renewals (more than typically allowed) b/c of being too ill to get to the library on that day the library convinced me that anyone who has trouble getting out to any extent on a regular basis is welcome to use the delivery service; i don't any longer as my mom now serves as my "delivery service" (as she likes to go herself), but when i lived on my own it was a great gift....and it didn't mean that i still couldn't visit the library myself on occasion if able. sometimes deciding on a subject to study or a project to work on can give more shape or meaning to what otherwise can feel like random activity, i.e. reading about a particular plant that you own to learn how to keep it alive, learning a craft to then make as gifts, reading or listening to all the books written by a particular author, etc. for my movie watching in recent months i've actually been watching all of the academy award best picture winners from the inception of the award ceremony (1928) to the present; it's turned watching movies, some of which i certainly never would have watched otherwise, into something that's felt almost like a class on the history of film rather than just watching movies. not that there's anything wrong with just watching movies (something i also do plenty of!) but i've enjoyed the extra depth of my self-prescribed movie project (and would certainly recommend it to others!) it's turned times when i'm too ill to do anything but watch a movie into my feeling like i'm still "doing something" too, as i still get to check a movie off of my list! i'm also a bug proponent of writing & would encourage anyone to find the way that feels most comfortable, whether poetry, fiction, journaling, or anything else. i don't write as much as i'd like as i have a hard time restraining myself once i get started (can't you tell?!), but have done so extensively at certain points in my life & am confident that it has left me a better person for it. if you have trouble getting started, there are various journals that have prompts, or other similar utilities, that can serve as a way to get you started & get those creative juices flowing. if you (and/or anyone else) would be interested in starting a writing club wherein we'd share things we've written, i'd definitely be game. perhaps i'll start another post to mention the idea....it's one that that popped into my head. for me i write things that would be considered journaling, as well as essay-type stuff on various topics & some poetry. some of my writing revolves around my faith life as well as a part of bible studies/ discussion & prayer that i try to make part of my life on a regular basis. writing letters to others, either on paper (people appreciate "real" letters even more in this day & age) or via email also counts as writing. some people enjoy keeping blogs regularly as well to share their writing with others; i have a website myself but have mostly used it as a tool to keep people up to date rather than for frequent writing (though i haven't touched it since january at the moment....yikes). hmmm...can there possibly be anything else that i've left out? ah...i have a DVD recorder that i'm going to use to put together old home movies onto DVDs for safekeeping of our family videos. once i get myself going on it it will be something i can do while lying down or reclined the majority of the time but obviously required the initial investment of the DVD/R, though it's one i've enjoyed wholeheartedly already since getting it at the beginning of the year. i think for me, in addition to being blessed with a "can't be bored gene", my stubborness in wanting to do as much as i can do has helped me to figure out creative ways to do things that some might think require needing to sit up straight at a table. i suppose i've made some messes in the process, but nothing that's left me worse for the wear (other than finding some beads in between my sheets on occasion!). an old sheet or towel to lay over the bed or on the carpet is a worthwhile investment though that can save some headaches later on. last but not least, i enjoy talking on the phone so spend some time doing that, though not as much as i used to. in addition to more typical phone chats though with friends & family, sometimes there are volunteer opportunities you can participate in by phone as well. churches or senior centers sometimes have people who are ill or elderly and unable to get out of the house and thus appreciate hearing a friendly voice on the phone just to let them know someone is thinking of them. some political campaigns have systems set up wherein you can make phone calls from the comfort of you own home (or bed!) to help promote your favorite candidate or issue; i've done this some for the current presidential election & have really appreciated being able to be involved. okay...i really think i need to shut up now. i cannot believe i've written so much, and hope that there's at least something helpful in the midst of all my ramblings....sorry for taking up all your sitting at the computer time though. i don't usually write quite so much but suppose my plethora of interests made themselves known once i got going here, eh? part of the reason i don't post all that often is that i tend to write so much when i do....i suppose i proved my point there, eh? if there's anything in my ramblings though that you have questions about, anything you need help figuring out how to do creatively within particular constraints, etc, let me know & i'll do my best to help in any way i can. good luck!!! melissa

hi sarah - sorry for your frustrations. i know that, for me, the difficulties of dealing with the medical system and other stuff (paperwork, insurance, etc) is often tougher than the illness itself. sounds like you might be feeling the same way. while i'm not intimately acquainted with the VA system, i have a bit of familiarity with it & had a few ideas after reading your post. it sounds like you haven't really encountered any docs who are specialists in dysautonomia...not something that surprises me. i know that your standard requirement is to be seen by physicians within the VA system, but isn't there a way to apply to see a doctor outside of the system if/ when there isn't an appropriate specialist available within the system? i don't know the details but am almost certain there is some application procedure available; i'm sure it's a pain, but i would encourage you to look into it as seeing a doctor who is actually an autonomic specialist - even if only once - might do wonders for you, not only physically but mentally. i'm NOT implying that you have a mental/ psych issue going on, only that with the run around you've been getting it might make you feel so much better to see a doc who knows what s/he is talking about!! one other thought would be to see if there's a primary care doc within your system that's open to learning about dysautonomia; sometimes primary care docs are more open to learning & acknowledging that they don't know all than specialists are. if you found the "right" person s/he might also be helpful in the process of applying to see a specialist out of the system as well. i don't mean to imply that the procedure to see a non-VA doc is something that's easy to do but rather to encourage you that it might be worth considering. it's not that any autonomic specialist is going to have a magic answer for you or an instant cure, but the right one might be able to work with you via only a few appointments in a way that would then help other docs (within the VA) to better care for you moving forward. hang in there the best you can...i know it's easier said than done! melissa

i'm probably too late for you to see my post, but still wanted to send my prayers & good wishes your way. you'll be in my thoughts & prayers tomorrow as you have the surgery & afterward as you recover. i hope & pray that the stimulator will bring you more relief than you can even imagine...i know of many people for whom it has worked wonders. i'm jealous that you have the chance to try it! take care of yourself & be patient as you recover....any kind of surgery takes a lot out of you, and the stimulator doesn't always reach it's full effect for some time. sending lots of prayers & best wishes! melissa

i'm too sleepy to write much at the moment but couldn't wait until tomorrow to send my congratulations! i'm SO happy & excited for you!!!. i don't have any words of wisdom to offer as i haven't been a mother myself but there are plenty of others who will help you out in that regard (as they already are). i can imagine that, despite the excitement, it must also be overwhelming to think about taking care of a little one in the midst of dealing with your own health limitations, but know that - with God's help - it will work out fine. i know that we don't know one another too well, but all i do know of you makes me certain that you will be an awesome mom. i of course hope that your worse days & weeks pregnancy-wise are behind you, or will be very soon, and that you'll soon feel that boost of the extra blood blood volume that comes with all the changes in your body. take care of yourself the best that you can while you're battling the extra fatigue & nausea & hopefully both will subside soon. you - and the little one inside of you - are in my prayers! congrats congrats congrats!!! melissa