DancingLight

aaaahhh.... i am crying and laughing at the same time too...herdswoman you are a riot and calypso you made me cry! (so did some of the other posts...) katherine, you are right that stacey and jim have weathered more than most couples ever do. it gives me faith in men again! emily

beverly, that is really interesting. thank you for continuing to share nicole's story (and yours too!)... i am learning so much from you and also am really feeling like i am getting to know the both of you. i too, can look back and say there were things that made me not "normal" growing up...but it was normal to me and to my mom and dad. is nicole and only child? i am, and so that made it even more difficult to see that i was different from other kids. i just was me...and that was normal to us. there wasn't another kid to compare me too! i must hit the sack...i promise i am going to post more one of these days! i think i should really sit down and try to write my "story" for the dinet site since you and others have asked me. this might be just the motivation i need! also, beverly...if you haven't already and if you have energy please read my post under "so lonesome" by ernie b/c some of my story is there and i think nicole and i can relate on that stuff....thanks and hello to nicole. emily

nina, no, i REALLY am gluten-free...i cannot cheat AT all without consequences. i am also Casein-free, egg-free, nut-free and on and on. i am aware of the hidden sources of gluten...but am still working on it. still, i only really eat like a cave woman...meat, fish, veggies and fruit, rice, potatoes. it wasn't that the doctor didn't believe that i was gluten-free...it was that he thought it was a lot of work to do it and not worth it if i wasn't "really celiac". it was a nuisance as a diet he said. well, yes, but it WORKS. also, i had the genetic test for celiac as well as the ANA done, but since i had already been gluten-free for soooo long it was negative. sorry if i wasn't clear on my level of strictness on this diet. i am truly gluten-free... and, tinkyada is my favorite rice pasta too...we are having it tonight for dinner. thanks for the tips. i appreciate it. those sites are helpful and i want to print the forbidden foods list once and for all. emily

aaack! geneva! i am glad your doc said that to you about the gluten-free diet. that makes me feel better! to know there are docs who take it seriously. i agree with his attitude...if it helps, go with it. and why put yourself through adding it back in for the test. especially since we all know that you can ahve gluten intolerance and not celiac. anyway, no, i had an awful visit with this doc and i am so frustrated...what does a woman have to do to be taken seriously these days? anyway, i wanted to let you know that i will post in a separate post about my appt. and i would love your feedback. i may not get to it right away, but i will get to it...b/c i really am so keyed up about it!!! well, maybe livid would be a better word! (okay, breathing, calming down now....i maybe should wait to post til i am not so cranky!) emily

oh stacey!!! i just read your post. and it made me so sad. i feel so many of the same emotions as you on anniversaries and birthdays. it is mind boggling how it seems like yesterday that we got sick but it really has been years. i'm not at nine, i'm on my way to 7 and i can hardly believe it when i say it. you know? your husband sounds amazing and you two have really learned the meaning of true love, not lust, not romantic love...but companionate love, the kind that lasts. that is such a gift. still, it definitely is so hard that you can't do the things you love most--either together or alone. and i know what you mean about every day being a struggle. ugh! just the fact that you are still trucking along through all of this is a huge testament to the strength of your spirit. i do not say that lightly. sometimes i do wonder what makes us get up every day only to feel like crap still! but, like you, i have that endless hope and i don't want to miss out on the beautiful things in this world that i CAN still enjoy. sometimes i have to just hold on to tiny little moments...to remind myself that this is why i am here on this earth and want to stay here. you know? like a little moment with your husband, the fall leaves on the trees, the sunshine, etc. dreaming about dancing again! this is NEVER what any of us imagined for our lives...and it is hard to let go of wanting more. like you, i live day to day, moment to moment, but sometimes, like on anniversaries, it is so easy to start wanting more, wishing for more, etc. i just want a day of not feeling like crap! sorry i am not more uplifting in this post. i don't want to be all chipper and la-dee-da, b/c what you are feeling is so real, and i think you need to just let yourself be sad and grieve and cry together with your husband. you do stay "up" most of the time, so, give yourself the permission to just be sad for a bit. hey, if your going to be in the swamp, really be there! notice all of it! i know you will have better days than today...just know i am sending you hugs and strength and courage and will say a prayer for you. don't worry about "taking" and not "giving" right now on this site...we all cycle in and out of giving and receivign. i have times when i completely rely on others here and feel like i don't give anything. and other times i feel like i am giving back. we always have to have givers and receivers. if we just had givers or just had receivers....well, that wouldn't work, would it???? if you can't tell, i am still on speed! my grandma said, boy, you sound energetic and happy today! it cracked me up. whew, breathe, emily, breathe. oh, and stacey, i know everything is a drag when you feel lousy...but if you can think of anything that would bring you joy today...totally indulgent....DO IT! even if it is watching harry potter again! or lighting a candle and remember that light is the light of god. there is light even in the darkest of places. i have to remind myself that every day, and every week when i light the sabbath candles. okay, gotta eat a snack (is there a theme here...i am always off to eat it seems...) later alligator!!!! emily

jess, how are you feeling? and what did you decide to do??? thinking about you....and missing you! emily

amy, i haven't read everything yet. (aaahhh, my stomach is calling out for food...), but i am so glad that you posted all of this. i have really been wondering about the link and why so many of us either have celiac or benefit from a gluten-free diet. i just had GI appt. this week and was so furious. one of the things he wouldn't believe me on was the gluten-free diet i am on. anyway, i won't go in to it...it's jus that your post was perfect timing. nina...i guess i am the opposite...i'm the psychology nerd...i like all that stuff better than the more scientific approach...hmmmmm....the mind is such a cool think. although, i do like the science and did a lot of pre-med classes and lots of psych classes with stats, research methods, etc...so i guess i'm just a big nerd too. no, i KNOW i am a big nerd. emily

Ernie, thank you so much for taking the time to read my super-long post. i am glad that you found it helpful. and YES, talking on the phone is exhausting! even using a headset and lying down, it doesn't matter. i still have a "spell" and go into fight or flight. some days i can talk for 15 minutes and some days and hour and some days not at all. my mom can SEE the color going from my face as i fatigue from talking on the phone or visiting with a friend in person. (okay, okay, so i don't have much color in my face to begin with! it's all blush! thank god for make-up) this illness is so hard b/c all activities...physical, emotional, social and intellectual are fatiguing. that is what i find so frustrating. hooray for you for going to the writing group! emily

oh ernie! i just looked at how long that post of mine is ....ooopss!! still, i want to add two more things! 1. if i am too tired to talk on the phone or my friends are "unavailable" (and i am sick of typing--which usually is pretty quickly)...i LOVE to write snail mail. it makes me feel so connected to my friends and they go nuts to get mail! it makes me so happy to doing it. i don't know why. it's like this little thrill for me to write a letter or even just a short note and decorate the envelope. i also like to make cards, use stamps, markers, stickers whatver. goofy stuff. just to give my friends a laugh. nothing fancy. like, i found my stickers from the eighties and have been using those. it makes my friends smile. it is something other than biils. there is nothing equivalent to sealing an evelope, putting a stamp on it and taking it out to the mailbox. aaaaahhhh the simple joys of life! 2. SCHEDULE PHONE CALLS with people. my friends and i either set up times to talk via email or phone so that we will both be focused on the conversations. my friends take time out or their crazy schedules and i pick a time that i will be awake and i save my energy all day for that conversation. that way i am able to enjoy it. also, it is so easy (whether sick or well) to say...oh i'll call another day when i haver more time/energy/am in a better mood. this way...we make time for each other and make the effort to stay connected. i.e. one of my friends and i talk every other week....if we can't find a mutual time, we still call and say, okay, how about in a week at this time? she has told me that she feels closer to me emotionally than to her frineds nearby simply b/c we put the effort in. also, i might have a phone call scheduled and not feel well...but that way i CAN"T BACK OUT! b/c i don't want to let someone down! (i will cancel if i am too sick or keep the conversation shorter.) but, usually, i feel better after being pulled out of my own little world and thinking about someone else! so, that's it for now. i hope you aren't completely exhausted from reading this. i would be. i don't even know if you will want to read the darn thing! emily

ernie! i promised i would respond to this post of yours...and i am just now getting to it. there are just so many posts to keep up with! beverly...wow! that was so well put, as were so many of the other posts so far. ernie...i am very glad that you posted this topic. i know it is hard to post these things, but here, you are not alone in this and we will understand! i just wanted you to know that i also get very lonely. sometimes i think i am doing just fine and la-dee-da and then all of the sudden it will hit me and i will feel very alone in the world. i live with my mom, but she is more of an introvert and i need more "connection time." i am also mostly homebound and my socializing ends up being at the drs. office or something like that. i spend a lot of my precious energy here on this site, talking on the phone with friends or writing letters. i really have to push myself to keep reaching out and not withdraw. it is so hard to call my friends sometimes b/c i feel so lousy and don't feel like i want to be "up". i am cranky and sad! i feel like they will burn out of hearing that i feel awful still and nothing has changed. i also, like nicole, have to really be the one to reach out. and sometimes that makes me frustrated b/c i wish my friends would sometimes take the initiative more. but, i think beverly is right in that i do give off signs that i am too tired and they are gunshy to call me. the other thing that is so hard is that all of my friends live far away and they have very busy and full lives. kids, grad school, work, husbands/wives. so, sometimes i feel like they don't have the time for me or that i'm just something they are trying to fit it. or that i NEED them a lot more than they need me. that is scary and that is when my loneliness kicks in. i suddenly think...man, i don't have anybody. who would really be here if i needed them? locally, i don't know how to create a support network and that is a huge challenge for me. i have tried to do a couple of things like a book group or go visit someone but it takes absolutely everything out of me. and maybe that is what i need to do. let that be my priority over everything else. but i hate having something that should be fun wipe me out for days. it's hard to keep forcing myself to try to go out. i visited a neighbor last week and she has two little kids. she complimented me on how much they adore me. that melted my heart. i overdid (i was there 1 1/2 hours) and was miserable afterwards. but i think it was worth it. i love kids so much and my heart aches to be a mommy. sometimes, when i get off of the phone with a friend or try to go out, i feel MORE lonely afterwards than i did before. simply b/c i feel like an outsider looking in. you know? like, all these people have these full lives and so much going on and i just don't fit in. they go home to somebody or to something and i go home and feel sick and lonely. i also miss my friends terrible when i get off of the phone with them! like others have said, i have learned sooo much about how to be a better friend as well as who my true friends are. i count my blessings that i have been able to maintain these friendships long-dstance for so many years (i have been out of college for 6 years and have not even seen two of my closest friends since then). my best friend and used to touch base every day on the phone and she lived back in town for a while, now that she is gone it is so hard to get used to not being able to have the day to day contact...the talk about anything and everything stuff. i miss having that day to day contact. she was the one we could gossip or have a heart to heart whatever we were in the mood for. but when you have to go longer periods of time without talking you have to squeeze so much more in and miss the day to day stuff. i guess that is what makes me feel most lonely. also, face to face is still the best and i don't get that much. my friends who have stuck by me....what i have learned...is that they LOVE ME. the love MY ESSENCE. and they are able to see that through the illness. they see me. they don't see a sick person. it seems harder to meet people post-illness b/c they just see that. i don't know. my least favorite question in the whole world is "what do you DO?" and i just don't know how to answer. and sometimes i avoid situations for that reason. not good, i know. i have learned the gift of true loving friendships. yet, i also know the darkness of loneliness. it is such a hard spot to be in. i wish i had words of wisdom. like katherine said, our society is not set up to help chronically ill people feel less isolated. sometimes i know i bring it on myself b/c i don't like to be vulnerable and i don't like people to see me "look sick" so i will only see them if i can get dressed and get make-up on. i am trying to learn to let go of that. a friend came and stayed and took care of me for a weekend and i couldn't hide my paleness, fatigue, etc. i can do it for a coupel of hours, but longer than that...forget it! i also am learning that if people want to come visit they have to love my messes and they have to be able to fend for themselves. i can't be the hostess with the mostess. i have a VERY LONG way to go on these issues. it is the hardest when i am in the deep deep potsholes...where i am too sick to go online, too sick to call a friend. and since i am usually the one who calls them, i don't necessarily hear from them. so i get really, really lonely then. and that is when i need my friends the most. ernie, also, i wanted to mention your comment on tv and internet. i was so anti-internet and tv before i got sick, i was kind of a snob about it. but, you are not sick b/c you do those things. now, i rely on them both a lot. we do what we can do. if you felt better you wouldn't watch tv or spend as much time on the internet. you would be out living your life. but, since you can't do those other things, you do what you can. getting a laptop computer and reaching out to people on this site and also emailing my friends is the best thing i do for myself. i believe that connectedness is so important...yes, we would choose face to face first, then phone, then internet...but at least we HAVE this internet community. i cannot even begin to imagining surviving this without this community and resource. as for tv, like jess, i tune in to my favorite shows and rent movies. they are a treat and sometimes i don't feel well enough for anything else. i beat myself up too and feel "lazy" but, my mom keeps saying, emily it's okay. like tearose, i am very introspective and do a lot of thinking in my sick time. probably too much. i'm one of those racing thoughts people. i wish i had more tips on how to create a support system or feel more connected. it is a vicious cycle sometimes, b/c the worse we feel, the less we want to reach out. most of the time people are receptive, but sometimes they aren't and that is the hard part. usually people are empathetic, but i still have a hard time telling people i am chronically ill and not having the conversation stop dead. so, i hang on for dear life to my mom, my dog and my dear friends around the country and hope that i will see them soon! i just want you to know....next time you feel lonely, log on here. and if you don't feel well enough to log on...know that you ARE TRULY NOT ALONE...there are many of us feeling your same emotions. we are far away in miles, but not in spirit. okay, i just started a new med and it is literally speed! i am wired. and i just wrote a novel here. i am sorry if i bored you to tears. thanks for listening to my rambling. also, ernie, i hope you will continue to feel that you contribute something to this site. i know you said that you feel like maybe you don't make a difference here (or something to that effect?) and i wanted to say that you have been a constant since i joined ndrf and now potsplace. i have followed your stories and i would feel at a loss if you did not continue to contribute your wisdom and support on this board. and, never worry about spelling...we don't care! keep writing! later alligator! emily

corina! well, i am sure you are already off on your weekend at the bungalow...but i am sending good thoughts thst you are having fun! i hope it is relaxing and as POTS-free as life can be for us POTS folks! you made me long to go back to europe some day to travel. please let us know how your trip was when you get back! also, i wanted to thank you soooo much for your post in another thread about how i always make you laugh! yeah! that made me feel so loved! and, i am just glad that i am touching a life in a positive way! it means a lot to me. so, later alligator! what's alligator in dutch?? emily

goldiedance, i sure hope your much-deserved and much-needed relief continues! i hope you continue to feel well on the mestinon. i do not know your whole story, but it sounds like you have been sick for many years without much improvement. that has been my story too! but i think you have been sick much longer....my heart goes out to you. i hope this is the beginning of better times for you... why are you not a fan of the DDAVP? just wondering? how much do you take? i take it too and really like it, but would like to take more to get more relief from having to pee all of the time...just curious what you felt about it. later alligator! emily

the wrist ones look tempting b/c they would be so much easier...plus i feel like by the time i fiddle around to get the arm cuff on my bp is changing all over the place and i am not getting the reading i want. still, as said earlier, the arm cuffs are supposed to be the most accurate. i have an automatic one to b/c i think it is just easier to use. i have an omron. that was the one dr. grubb recommended to me. there are so many choices out there now! you could check on amazon.com...or some other site that they have reviews of products. i always find those really helpful. also, you can ask your pharmacist. and lastly, i think consumer reports has done ratings. depends how much energy you want to put in to shopping for a cuff! you can't really go wrong with an omron i don't think. tearose, i am glad tha tyou have had good luck with that wrist one...i may check those out. thanks. later alligators! emily

well, a standard in our house is a plain old roast chicken in the oven. we love our local free-range chickens, but a grocery store chicken will do! i am a BIG eater, so nothing lasts long here, but a chicken serves as leftovers for sandwiches, dinners, etc. you can rub some herbs, kosher salt, etc. under the skin and stick a lemon up the butt (sorry! all that talk from tearose on an earlier post! just teasing you tea rose!) it is soooo yummy. i can post the exact recipe if you want, but a standard roast chicken is always good and easy. we also love salmon, salmon, salmon...one called honey-baked and also poached salmon. you can make a couple of pounds or more and eat it leftover. i am too pooped to actually get up and get the salmon recipe, but maybe later! sorry. pots of veggie soup are good...you can use a bunch of frozen veggies instead of chopping the fresh. hmmm...hwat else are standards? i don't know, i am high-maintenance in diet dep't. my mom has to cook, cook, cook b/c nothing processed or with gluten or dairy sits with me. later alligators! i am too tired to be trying to be coherent... emily

i want to purchase some too! will you post a picture? emily

kate, as i said in an earlier post...i think in your case you might want to look in to celiac, simply b/c it can run in families. there are so many conditions that can mimic pots, it is hard to know just where to start. as for celiac...i had the blood test twice and it came back neg. for celiac, probably b/c both times i had already been on a gluten-free diet for a long time. i just cannot tolerate gluten or dairy. i honestly could not eat what nina ate and not be completely deblitated from eating that stuff. i have to be super careful. i really don't know if i have celiac or not, but the diet works for me big time. it doesn't solve everything, but it works. elimination diets are a LOT of work, but one of the best ways to figure out your food intolerances. it also takes a while after you stop eating foods like gluten to really let your body heal and see results. later alligator! emily

morgan, are you calling me a WEENIE???? emily

tearose.... is that where everyone is??? he-he. i laughed at your post about beverly getting more responses after the election is over. no matter what side you are on it was so absorbing...i couldn't think about anything else and i noticed that the site here was sooooo inactive....i was wondering if everyone else was sucked in to the election stuff too. anyway, tearose, i am glad that you shared your story. i am glad to be getting to know you on this site. you have a LOT of wisdom! i am going to go back and read your story when i have some more focus and am not heading to bed! for now, hitting the sack! emily

nina... well, we already knew you were full of it....he-he. sorry, you brought it up. hard to resist. i do not have any scoop on the gastroparesis...it seems to fit your descriptions though that i have read over the past year or so...just b/c you have such slow motility and stuff. i have read a little on gastroparesis but not too much. why did the one doctor not want you to take zelnorm? just wondering what the reasoning was? i was wondering if you felt like they are on the right track with this diagnosis. excuse the pun, but what is your "gut" telling you? do you feel like they are looking at the right thing? what a mess to go through to much from gi to gyn and back... please keep us posted. i am off to a GI consult tomorrow myself. should be interesting. emily

blackwolf... aahhh...i wish i could learn to be "short and sweet" in my replies like that! i'm serious! i am so verbose! emily

morgan and dave... you two must be a laugh a minute there...you both have such a great sense of humor... i hope you both got a good nap this afternoon and i am glad that you are keeping us posted. dave...morgan gives a TON to all of us too...so we are just trying to be there after she is there for all of us so much. we come to care deeply about each other on this site, i think. i never thought i could feel so connected to an "internet" community...but i do, and i think that many of the rest of us feel the same way. you two take good care of yourselves, you hear? (as they say in the south ) emily

julie? a massage? what??? sorry, had to pick on you! i hate those echos...they are always saying to me...we are having a hard time finding blah-de-blah as they dig the probe into my ribs on the left side, or up under the ribcage by the stomach (which makes me want to puke)....i think they hurt! i guess i am a wimp! no really, they are one of the easiest of tests and a good thing to get done, but i don't find them comfortable. i am one of those people that is so tender to the touch, everything like that hurts. okay! just needed to tease you. emily

jess! well, i have only had two experiences with zofran. how much did he prescribe? when i went to the ER they gave me zofran by IV and i insisted that they give me 1/2 dose (4 mg) instead of 8 just in case. later, i asked for the second half of the dose. let's just say...wow! that drug was amazing. my nausea was unbearable. and i have had a lot of nausea in my life. i thought...man, why didn't i ever know about this stuff before? with the IV, it kicked in so fast in a few minutes i was breathing sighs of relief. i still felt a little queasy and asked for the rest of the dose just in case. i think it is often use for chemotherapy patients and is targeted specifically for nausea. supposedly it has low side effects for those folks. i did not have a single negative side effect from this drug...and i usually don't tolerate anything. unless it contributed to lowering my bp, which i think was the percocet that kicked in later. i took zofran at home in an under-the-tongue dissovable tablet...only took 1/2 of an 8 mg tablet for my second "attack" of that crazy GI stuff i had. that time it worked a little but i still ended up throwing up. i just think i was so sick and also maybe didn't take enough. still, i would take it again if i needed to. i have never taken phenegran though, so can't compare. i also know that i have seen leah mention that she takes it. someone else said that they wouldn't take it (herdswoman?) but am not sure why. so i am only one little experience with the drug. i hope it helps you!!!!! i know you need the relief. and maybe just stopping the cycle of nausea will help you be able to eat, etc. you know??? let us know what you decide! hoping you have nausea-free days very soon. emily

morgan, what happened at your PCP appt. today? did you get any more helpful/more reliable information? all the unknowns are the worst. i don't even know what to say...except that my heart is breaking for you both and i sure hope you are in for some better times very very soon. lots of love and hugs. emily

morgan... wow! you got a lot of responses fast tonight! i hope they lift your spirits a bit...and let you know how much we all care about you on this board. right before i saw your post i was getting ready to post or email to you...so i am glad that you posted to let us know where things are with you and dave. please, please, turn to us when you need support over the next few days. i am about to hit the sack, which is why this message is a bit flighty...so i will say a prayer for all of you right now. sorry to keep this so short. but i saw it right before i was going to turn off my computer before bed...and had to respond and at least let you know i am thinking about, k????? more later alligator! HUGS. emily