DancingLight

well, i talked to the nurse at the doctor's office today and she said that he felt i would have to try and "slide by" without the shot....so that is the plan. a couple of places in town received their full supply of vaccine, but my office did not...they only got 24 vaccines! so, basically, the nurse said you had to basically be dying to get the shot! i am using her words, not mine! eeek. not good. although, my dad was in for an appt. yesterday and even though he isn't 65 he got one probably b/c he has asthma and is high risk. the nurse said that the chronic illness stipulation is very specific...COPD, heart problems or asthma... she said they might want to give me the pneumonia vaccine. anyone else besides nina have this? what do yout think? so, i think my decision is made for me! if there is supply left somewhere else after those who need it most get it, then maybe i will do that. but right now, it seems that in our area it really needs to be rationed carefully...so let's just hope, for EVERYONE that this is not a bad flu season! i live in a univeristy town and i am picturing all of the students sick! yuck! and my parents teaching to a classroom of coughing, stuffed-up kids! eeek! emily

I know there is another post running on gall bladder stuff, but I was afraid this might get lost and is a little different question...so I posted separately... Two questions since it seems so many of you have had lots of CT scans and lots of gall bladder stuff... 1. I had my u/s done on Wednesday (nina, have you heard about yours yet?). The didn't find really anything, except a small polyp and said that I need a CT scan. They said that the results this way are inconclusive and they couldn't tell anything from the u/s. Would a polyp cause symptoms? Is it anything to be concerned about? What would they do if it was a polyp? 2. I have to get the CT scan where you chug this junk before-hand so your stomach will light up. hmmmm.... I am a little nervous about what is in the stuff you drink. Anyone know or have experience with it? Did you tolerate it okay? I am so sensitive to food and dyes and all that yuck. Thanks!!!!! I couldn't get much out of the nurse today, so I thought I'd turn to you all! Hope you are having a good weekend so far. Emily

consider it done... sending good thoughts..........can you feel them? emily

hey jess! i am really glad that you posted to let us know how it went. yeah!!! i am so glad that the visit with him was worth your time (and precious out-of-pocket money!)...it is good to know that you at least have a resource now nearby who treats you with respect. sometimes that is more important than them knowing everything about POTS, you know? although, it is nice to have both together. i am also glad that david went with you to meet him and to hear what he had to say. thanks again for letting us know how it went. did you go to the alternative dr. yet? just curious how it went. emily

purplefocus...you made me laugh about the mushy stuff! i cry all the time reading the sweet things people say to each other on this site! thanks for answering my "on the other side" question...i do hope you will be able to go back to nursing. but, in the mean time....you are right that you are making a difference just the way you are now. our essence is what matters! i also thought it was interesting how you said that you know things about getting disability etc. that you didn't know before and help people that way. i am an "expert" in all these things now too that i never dreamed of! i just hope that our experiences and what we learn makes the process easier for the next folks! you know? danelle...please, please keep us posted on what you hear. when you get your first answer back...let us know and maybe we all can have some tips where to go from there? i ended up getting lawyer. it cost me like 250 dollars TOTAL. honestly, that was nothing for the HUGE amount of time he spent on my case...and the peace of mind i had from it was AMAZING. it seems many folks hae not had a problem getting disability without a lawyer, but i had no luck that route. he probably made 2 dollars an hour off of me and that's it. (they can only charge a certain percentage of your retro-pay). anyway, danelle, i just wanted to offer you a little encouragement since yousaid you are really struggling right now and let you know that i'm thinking about you. this illness really throws us some curve balls huh? ugh! the good news is that I DID WIN my case and have had no questions asked since then. (i'd better go knock on wood right about now!) so, you WILL WIN. the waiting just stinks! emily

um, maybe i should start with getting instant messager!

good grief nina! that is like greek to me, but i sort of understand...i will try it first one of these days and if it doesn't work i will let you know! somehow i knew you would be the one to reply...you are miss computer! thanks so much! see, as geneva says, you are part super-hero... i really appreciate that help! i really want to learn how to be more comfortable with computer stuff. emily

this is off-topic, but related to this site...so i hope it is okay... i saw cattale's odie and i thought it was pretty cool and i love the personal pics by names...like nina's mightmouse. are they called atars? i figured out how to do the ones that are one the site here. but how do you put your own up? is it a complicated computer technical process? i am bit bad at computer stuff. sorry to bug you on this...if it is really hard to do, just let me know and i won't try! thanks! emily

thanks nina, i am especially interested in all this b/c i am trying to figure out the cause of my gi pain and whether it is worth investigating or i should just chalk it up to POTS. emily

paige! yeah! hip hip hooray! what a huge relief! the process is so stressful! i had such a hard time getting mine, but it is so great to have it now, especially the medical coverage. just wanted to say yeah, and hope you have lots more days of your "sun shining" as you say! emily p.s. it's so weird to be on the "other side"? do you feel that way? i'm still not used to it. especially you nurses who spent your lives helping people. oh, i hope you are not reading this wrong. you deserve your benefits. that is not what i mean. it is just that i never thought i would be the one who needed the help....i wanted to be the helper. i think that is the case for so many of us. but maybe that is the lesson in it all...learning to receive? okay, that was deep sorry. this is what happens when they deprive me of food and water and sleep these medical tests! he-he.

my coughing is more like morgan describes...when i am having a lot of flip flops in the heart rate dep't. it's like i cough to regulate it again. it is similar to the tickle feeling you have, but not relieved by water or sucking on something. and not after eating...although, eating can cause tachy which could cause coughing. sounds like other folks are more onto what might be going on, but wanted you to know that i cough and it sounds AWFUL when i feel bad and my heart is goofy, but i don't think it means anything for me. the sinus stuff could definitely do it too! all that 'junk" as nina says. i guess that sounds better than saying phlegm or snot? emily

oh geneva...that is awful! i am sorry that is when your POTS started. that is the hard part about this whole vaccine thing. gayle...i don't know what to do either! i think maybe health-wise we are somewhat similar in our limitations and that makes the decision pretty tough...i don't know how many more "couch weeks" we can handle! emily

oh nina! i could not handle that trans-vaginal thing. eeek. nor not being able to pee. my pelvic exam is enough for me once a year. but you gotta do what you gotta do. now the waiting! please let us know...as you can see there are a lot of us in your corner here! geneva...the going without fluids thing turned out to be much harder than i anticipated. i guess the combo of no food and no fluids and too little sleep did me in b/c i completely crashed and was in bed all day afterwards. pretty pathetic seeing as nina is trucking along to class afterwards and i am lying around! ugh. i am a big wimp b/c i found the test uncomfortable and there was no probe IN me! just on my belly. but afterwards i was sick to my tummy and very nauseas. and it hurt. and ultrasounds are the easiest of tests! oh well, i am getting pathetic in my old age. nina...do we want to hope they find something or not? that is the hard part, like you said! nothing leaves no answers but also is "good" news! such a tough one. okay, later alligators. and thanks for the good wishes everyone in addition to good wishes for nina! i appreciate it. emily

this is a tough one! i am not out and about that much, but both of my parents are professors and around all of the sick students! coughing and sneezing without covering their mouths! the last couple of years i have gotten one b/c i was told by dr. grubb you are better off with the shot than getting the flu. and my pcp really pushes me to get it. i don't know what to do now that there is a shortage. what you said merrill, really made me think. i don't want to take the flu shot away from someone else. but, i also know that if i did get the flu, i would be set back for a very, very long time... i do always feel kind of yucky the first couple of days after the shot, and i always get nervous about getting it b/c one year i got really sick. but, i also don't think i want to risk the flu. i guess i will email my doctor and see what they say about getting it...whether i need it or not and if it would be taking it away from someone else in town... i am glad this topic came up as i was just thinking about it and reading about the shortage in the paper. it makes the decision much less clear...other years i would have just said...i'm getting it over getting the flu, but now i don't know! emily

UGH....no peeing! thanks for always making me laugh! love the mammogram story! i don't know if i could do that! gayle...it is for the gall bladder... emily

hey nina! good luck with it all. and let us know as soon as you know information! we will all have ants in our pants too! can't wait until i am old enough to have a mammogram. i'm just so looking forward to it. they will say, where are you boobs? there's not enough to squish between here! sorry, a little humor. i am off to eat my pre-ultrasound fat-free meal before my test tomorrow...yum, yum...mine is at 9 am...how long do you have to go without food if yours isn't until 2? eek! the no water is even harder! or maybe you dont have to do that stuff for what they are looking at! i don't know... well, also a congrats on getting closer to your PhD! huge accomplishment. both of my parents are PhDs and i am sure my dad would like it if i went on for more education! oops. gotta go eat before my time runs out for "food allowed"! eek! can you tell i like food? emily

ernie, i don't faint...but i am just like gayle and katherine in terms of the content of my dreams. i was just thinking about the other day before you posted b/c the dreams are so disturbing. many years ago i was sexually assaulted and i used to have recurrent dreams about it...and couldn't find anything to get rid of them. i was given access to hypnosis (i didn't have to pay for it!) for my then undiagnosed POTS...and lo and behold, we worked on my nightmares about the sexual assault...and they literally disappeared! i have not had them again. i was very skeptical, but it sure did work... the only problem is that now...i have the horrible illness dreams!!! good grief! so, i have the ones where i am gasping for breath, or am so weak i can't move, or can't scream out for help, or am in a situation where i am too weak to make it through. they are awful and so disturbing. i am wondering if hypnosis would help with this! just wanted you to know that you are not alone in having such dreams...although, in mine i don't faint. i think mine echo my deepest fears about this illness, as well as memories of the times when i have been the sickest (when i was literally gasping for air from low bp)....in some ways...many of our experiences are very traumatic with doctors and feeling unsafe b/c no one knows what to do for us...does that make sense. so, i think my dreams are a reflection of that... gayle...you are in psychology right??? what do you think?? anyway, that's the scoop for now... later alligators! emily

mary, yes, this forum is such a blessing. thanks for your post...it put a nice "cherry on top" for the day. i hope you continue to see improvement in time. emily

okay, will someone PLEASE come and organize my house!? my BIGGEST problem is that i have so little energy combined with the fact that i am a packrat... the combination means that i am sooo behind and so overwhelmed with stuff to sort through, organize etc. it stresses me out so much. i can't let go of wanting to be organized! i need to get over it, i know... but since you are all so organized, i think i will hire one of you! you know, to be my professional organizer. sorry, off topic, but had to chip in. maybe i should be cleaning instead of meditating?? take care, i am glad to know i am not alone on the mind racing thing. emily

JLB, that is a really good point. i always say, my greatest gift is being perceptive, but it can also be my greatest fault! but you put a different twist on it. i am glad you posted that. amy and merrill...can i just tell you how wonderful it is to hear you have such supportive husbands! it gives me hope and faith! and, yes, amy...i am hypervigilant too! i think it is a gift to be "in tune" with our bodies...but sometimes, the panic does set in unnecessarily. but, i also think, WE have to be the ones to pay attention to our bodies. only we know our bodies best. and the thing is, so many of us have to be on such high alert all the time to things b/c in the end WE are the ones that figure out if something is wrong or not...after years of not being taking seriously or dismissed by the medical field. does that make any sense? in some ways, being hyper-vigilant, i think, is survival. yes, sometimes we probably all take it too far, but i think this is also normal. this illness is so bizarre. new symptoms all of the time. but, i think we do have to listen to our bodies and be the ones aware of things. i.e. i was reflecting on my goofy er visit the other day and i thought how absolutely MENTALLY exhausting it was b/c i had to be on guard the whole time making sure they didn't give me certain meds, or too much, or this or that. they didn't monitor my bp, etc. etc. i thought, man, it was such hard work to go and convince them to pay attention to the pots. they had never even heard of it. i realized how draining it is to really have to be so on guard. so, i think it goes with the territory...but, sometimes, i wish i would be a little more relaxed about it all! but then, i also don't want to attribute everything to pots and miss something. it is a very difficult balance to achieve! okay, that was supposed to be much shorter...sorry! goodnight, emily

jess, whew! what a huge relief! i still think it is unjust that you can't get covered for pre-exisiting conditions, but that is a whole different story... mostly, i am relieved to hear that you have some insurance now! it is a little nerve-wracking without! and i know that you aren't a fly-by-the-seat-of-your-pants kind of person! thanks for sharing the good news, as many of us have followed yoru struggle with insurance companies and doctors offices from the beginning! i think the $144 will be well-spent and give you some peace of mind! take care alligator! emily

michigan jan.... excellent tip! i have had that same experience with meds...where i couldn't take the higher dose and should have started smaller. you may have to push the doctor on this one. i.e. was in the er the other day and they tried to give me 2 percocet...i said no, i will take one, they came in wiht two anyway. when they left the room i took 1/2...and that was plenty. my theory...you can always take more, but you can't take less once you take it! when i saw my regular doctor the next day he said...you were not being obstinate, you did the right thing....your bp would have bottomed out! i told the er doc to give me what he would give a toddler...as you can tell he listened so well....aaaargh...sorry, off topic so, my message...listen to your gut....and starting teeny-tiny does help psychologically too! i agree! it makes it bearable. everyone else had great tips too...merrill...i may have to get that book and also try just meditating on a word and see if it helps....i keep reminding myself that meditation is a "practice," but it is soooo hard! emily

dear beverly and nicole, i don't even know where to start, there is so much to respond to from your last couple of posts! i have a few minutes before dinner and wanted to at least start responding to all of your questions...your posts just bring up soooo much for me! first of all...welcome both of you to the board! i am so glad that you found us. and that you are asking all of your questions. i hope it is bringing you some peace of mind knowing there are others out there to help, and struggling with you. beverly...you are a special mom to do this for nicole and post. you remind me of my mom...b/c we are very close and she is my primary caregiver also. it has been very hard for me, as it is for nicole, to watch her struggle too. i just wanted to send you, the caregiver, a special hug. and nicole....a very big welcome to you!!!! i am 28 also....so we are immediately bonded . i am always broken-hearted every time i hear of another young person with such struggles. i hope that soone you will feel up to browsing the board yourself b/c it always makes me feel better! some days all i do is check in here. i have a laptop that makes it possible to do! i am just so sorry you are having such a rough time. ugh, the despondent part is definitely no fun, nor the anxiety...but i do think it will pass! it is IMPOSSIBLE to be chronically ill and not get down. also, the tachycardia and other accompanying symptoms can contribute a lot to the anxiety and it is really hard to even separate them out after a while. nicole, i just don't know what else to say, except that i have felt that horrible and just wanted it to be over and didn't feel like i wanted to fight...but i think that is just part of the cycle. i always cycle out of it. (i'm never a danger to myself or others! just clarifying so no body freaks out here! there are a lot of "mommies" on this board watching out for us!) if i read your post right you have been sick for 8 years now? is that correct? there was a lot of info, if i got it wrong please correct me! anyway, that is a very LONG time. i have been sick for 6 1/2 and there is a tremendous amount of grief and loss in that for me...our whole 20's as sick and unable to function. sometimes it just hits like a brick wall i think. like you though, most of the time somehow most of the time i am pretty up and able to fight, but not always. the hardest part is not to beat yourself up about it and be patient with yourself...emotionally and physically. okay, so maybe before i go eat dinner i should at least answer your BB question! sorry! got off on a tangent. i have so many thoughts going through my head wanting to say SOMETHING to make you feel better. i think you mean Corgard??? if you do, i love it. and it is one of the only drugs i swear by. i have tried to go off of it with disasterous effects. yes, bb's can make you more tired, but the pros of them outweigh the cons. i have only tried one other one as well as the generic of corgard and can't tolerate them. i have stuck with corgard, although, some docs don't care for it as the best choice. it is one of the old ones. if you do decide to try it....since your anxiety level is high right now...beware that you can feel a bit funny at first as your heart kind of "re-regulates"...i just felt the beats funnier, but let me tell you, i do not have tachy anymore. also, compression hose are a great discovery which no one really pushed with me and ended up doing on my own. might want to start with a lower compression adn work up. but i wear 30-40. let's just say, if you don't like 'em or they don't help....othey are quickly removable unlike a drug! so, i like them for a non-pharmacological approach with nothing to lose really. i guess the docs don't think young people will comply with wearing them...but i could care less now about that part of it all. i have lots of meditation cds with guided meditations that i do when i cannot tolerate anything else. and books on cd from the library are my other lifesaver in the worst relapses. they both help me with the anxiety. the books on tape are good b/c they don't cause more stimulation/fight or flight response for me like tv does. i hope something in here helps and that you find some relief soon. there are a lot of treatments left to try...it's just getting through trying them until you find the right ones!!! that is so much easier said than done. i too am terrified of new meds. just start teeny-tiny! well, i gotta eat dinner, more later. welcome, and please continue to keep us posted. emily

aaaack! i am EXACTLY like jess describes being. i started thinking maybe i had was a compulsive talker and need to go to "compulsive talkers anonymous!" i fear i have reaced the point of talking to the point of it driving folks nuts! i was so glad to hear that others feel that way too though about talking. i thought i was completely nuts. anyway, i know my racing thoughts just waste valuable energy and i also try to do meditation, mindfulness, etc. etc. but it is soooo hard. i want to badly to learn to just BE in the moment, not always somewhere else with my mind. i meditate almost everyday and i often pass the entire thirty minutes and realize my thoughts raced the whole time and that i didn't focus on my breath at all. i find this all very frustrating. i also find that when i am more tired, stressed, etc. the symptoms are worse. they seem worse when all i really need is rest...it's like the physical fight or fligh that our body goes in to to keep us from passing out kicks in mentally too causing racing thouhts...does that make any sense? i am not very linear! can you tell? can't type as fast as the mind is racing! anyway, if anyone finds good tips, i'd love 'em! until then, at least we are not alone in this! oh, i am also incredibly fatigued all of the time. emily

hey nina! we can send each other good vibes on wednesday.... i have one scheduled that day too....to look at my 'ol gallbladder! gosh, i hope your pain subsides before then. sending hugs, emily