DancingLight

Beverly, Wow! you are VERY perceptive...i suppose that is where nicole gets it from, huh? i want you to know that i have read your post twice now and am really turning it over in my head. i will write after i have some more time to process. you really touched on a topic that i need to do a LOT more work on in terms of not letting myself feel responsible for my mom's happiness, etc., etc. i think i will discuss what you brought up in therapy this week! (i have struggled with this the whole time i have been sick! it's a hard one as you know!) as for my level of functioning...i guess i must be a good actress huh? since you went back and read old posts and stuff and i sounded pretty good in terms of functioning...actually, i am VERY LOW functioning and mostly homebound. even at "good times" i am not able to drive, cook, go grocery shopping, do housework, etc. etc. i really just do the best i can to take care of myself, get through each day, get to appts. (one appt. is my project for the day), and take care of the dog. i fell awful ALL of the time. i am blessed with awesome friends, but most live far away. going out anywhere is killer for me. if we need to shop for something or try to go out to lunch it just really is hard. my friends are awesome when they come to town and visit and we talk on the phone. i try to keep my relationships as a HUGE priority no matter how badly i am feeling, which is why i spend time on the internet, phone or writing letters. i "schedule' phone calls with my friends or visits, and they completely wear me out for the day, or several days to follow (in the case of a visit). i haven't been able to meet new friends here so that is hard...but thankfully since i am a "townie" my friends still come "home" to see their parents and visit! i also have college friends who have come to stay...one who came a took over for a weekend and did all of the cooking, driving, etc. amazing! i have someone come once a week for a few hours and help do stuff that i want done around the house. eeek....i meant to just write that i wold write more later! i am starving! here's an example...i am heating up dinner and getting it out, but mom has everything already cooked. so that is sort of where my functioning is. as for my signature...those are all things that i love, but don't necessarily get to do them much! but, i still love them and do them when i can. i watch movies at home...tried the movie theater....not so good! so i wait for them to come out on video. anyway, what i really wanted to say is that i am thankful for your kindness and intuitivness and caring and compassion. thank you so much for taking the time to reach out to me and bring up that topic. i also want to learn more about you and nicole. we seem to have some similar interests. so, i will continue this later! with more on things. i debated whether to post this or write to you privately...but i like it when folks post their stories...so hopefully people won't mind my rambling! thanks again. emily

yeah opus! thanks! i will be checking out that site....to see if there is anything i MUST at to may already large collection of heated stuff!

amy, i am not married, nor do i have a little one, so i don't have any good insight. the things people already said were amazing...i hope that you will find them helpful! i do live with my mom, and she and i are VERY different in our communication styles. i like to talk, talk, talk things out and she withdraws. we try to go to counseling together sometimes just to check in on things. sometimes she takes her frustrations out in ways that are really hurtful to me, and i have to remind myself that it isn't about me. it is so hard b/c she is my mom, caregiver, and best friend. we are so very close to one another. also, we are learning that sometimes when we get mad at each other...or think we are mad at each other...we are really mad at the SITUATION....like what your husband described. we are mad that we have these limits or have to do things in a certain way, etc. we are mad that we can't live independently, etc. of course, there is a flip side to all of those things...the blessing of time together that we wouldn't have if i lived far away and was working, etc. but, sometimes we do feel trapped by this life. i mention this b/c i get hurt very easily and my mom and i are so different. sometimes she can have an outburst somewhat like your husband did. she might say mean things, but later she feels badly. also, we rarely yell (i grew up doing that and hearing that and now we are mindful not to do that!), but we also forget to "fight well"...and sometimes after we "get it out" like your husband did things start to go more smoothly. my mom "stuffs" things and i don't...and sometimes that can boil over in bad ways. it's not a good or a bad thing, it just is. that is how she works. the challenge for me is meeting my mom where she is. and trying to let go at times that it isn't about me. since i don't know your husband, i don't know if any of this makes sense. except that possibly, he's like my mom in that he is awesome and loving, but maybe "stuffs" things, and it just boiled over. perhaps he said things he didn't mean. or perhaps, yes, he is insanely frustrated by the situation, but not by YOU. there's a big difference b/w those things. i always have to say to my mom when she is withdrawing from me, "is this about something b/w us, or is this about you having work to do, etc." she has to remind me that she isn't made at ME about the illness. she is mad at the situation. i, of course, am a huge advocate of counseling...and maybe at some point your husband will change his mind. but for now, i hope this situation opens the door to more communication, closeness and understanding. also, please keep us posted. i haven't seen you on much and that always makes me worried about the folks who are "regulars." so, please let us know how you are faring! my heart goes out to you. emily

nina, i did sort of try to revive the ndrf one, but didn't get the interest. it seemed there might be more folks here that had loved ones interested...??? just wondering. emily

opus, the only thing that it says on the tag of my heated mittens is "dream time"...a company in calif. (of course! all the cool stuff i eat and have comes from calif!). but there isn't any other info. sorry not to be more helpful on that one! hope you find something soon to warm your hands! do you really get cold hands in florida? sorry, just teasing ya! emily

gayle! you made me laugh! thanks! opus! wow! thanks for typing all of that. i did dream about birds while napping . i know i am just dreaming right now...i don't have energy to take care of anything else, more or less myself right now...but i am really glad that you posted that information b/c i would like to start learning and maybe try to visit a store that has birds...i am very interested!!! i love animals and the birds sound so fascinating. your post really helped me to know what to look for and where...so i can start learning...and someday...get a bird! i know it won't be anytime soon, but i have endless hope that i will have more energy someday...so opus, when that happens...i will be all ready to get a bird! thanks! in some ways this topic seems "off topic," but in other ways...it seems PERFECT. our animals, especially for those of us with chronic illness, seem to be one of the most important healing and comforting aspects of our lives. i know that i cannot be without a dog...and he gets me through each day. we can learn a lot from them. my mom let us get the dog we have now precisely for the reason that she knew the value of an animal in my life when i am sick, even though she knew when i was really sick, she would have more work to do. gayle, my boy dog as i call him, is not nearly as sensitive as our two previous "girl dogs' were...think it's a gender thing? oops, sorry. i shouldn't have said that. off for dinner! emily

hey you parrot owners! i want to hear more about parrots...like how much work are they? are they all companionable? how long do they live? where do you get them? etc. etc. (and shhhhhhhhh....don't tell my mom i even asked this question! she about dies when i say i want a fish! ) i have always wondered about birds. so, we took asher to the vet today...and he is definitely MY dog....he has something maybe pinching in his neck, maybe a pinched nerve. so my mom has cervical stenosis, i have a possibly too narrow spinal column, and he has neck junk too! what is up with that? i guess God has a sense of humor huh? we were meant to be a family! i guess i thought you all could appreciate the comedy of it all. sick dog, sick me. you know, we are just two peas in a pod. well, i must nap now from the trip to the vet. i will dream about parrots. later alligators! (no pet alligators out there, huh?) emily

oh jess! i don't even know what to say! sending good thoughts to you and your little "bean"! (that is so cute!)(i guess they do sort of look like a kidney bean at this stage huh?). anyway, everything you went through today is so scary. i am so glad that you are close to your parents now and can have some mommy love! i am also grateful that they at least took you seriously in the ER today, but i hear you on getting all of those meds. i am terrified of meds and i am NOT pregnant...so i cannot imagine the extra emotions with knowing you have a little bean too. but, i do think it will al be okay...i think your little bean will be able to handle the one time deal of getting those meds...it's not like you're shooting up meds in an IV every day. plus, you had to do that to get your heartrate down. my heartrate before POTS and before beta-blocker was always 90-100 and that was normal for me...so i think you are okay in that range...but 200 sure does sound scary. what are SVTs? i don't have any insight...i just wanted to send you hugs tonight and let you know that you can whine all you want here! you rarely whine, so dig in and whine a little to us girl! morgan says it best...call whine-1-1 ! i love that! that isn't as funny i guess on a day that you actually had to call the real 911. eeek! jess, as already mentioned in previous posts...you are a really wonderful mom...and you need not beat yourself up about all of this! you are doing an amazing job...both with ethan and your little bean. as for nausea...i am sure you have tried all of the above...but just in case...those sea band things? those worked for my one friend when she was pregnant. but, then again, so did phenegran. i don't have any experience with actually being pregnant...however, i do like a product called preggie pops (www.preggiepops.com). they are expensive but i really like them and they fit with your more natural health approach. what else? just sucking on candied ginger, but the preggie pops are much easier to tolerate. can you take zofran when pregnant? i love that drug! i also like coke syrup for nausea. those are the only things that have helped me but i also know what it is like to have nausea that nothing works for....and it is so miserable! i think it is one of the worst feelings, honestly. well, i have to go and take care of my pooch who, if he would just LIE STILL, and not try to move around he wouldn't hurt so much! it's like having a toddler and saying "where does it hurt" and they can't tell you! it breaks my heart to watch him hurting! sorry. totally off topic. what a day you had jess. i found my first trip to the ER so traumatic. i hope you can rest up at your parents. isn't it the worst when you really do feel like you are dying??? it's hard to explain to people that POTS can really make you feel THAT bad! you know? but it does! it's like, please just put me out for a while (that is if you can do it without killingme with the drugs! aaack!) and wake me up when this is all over! that is at least how i feel. okay, what am i supposed to do with my poor dog???? i hope you are laughing right about now at my lack of focus b/c of him and how neurotic i am about him!!! can you imagine me as a mom??? scary, huh? i leave you with the mommy stuff and i'll stick with the dog for now! well, i gotta hit the sack. i hope you are able to come down from all of the stress/adrenaline of the day and get some sleep. sometimes those events make you so exhausted that your adrenaline kicks in and it is hard to get the rest you need. jess, sending a prayer for a better day tomorrow...and some relief from your symptoms soon... many hugs coming your way. later alligator! emily

yup, can't live without my pooch! who, at the moment hurt himself and is in so much pain he cries every time he moves....which is really distracting me from my own symptoms b/c i am busy worrying about him! he is a wild child, rescue dog and i think he was meant to be mine b/c he always has some health challenge, just like me! poor little guy! good night! emily

geneva! you are awesome! how did you remember that? wow! thank you! sorry i didn't reply sooner! i get distracted when reading all of the new posts...and think to myself, oh i need to reply to that later....and do i remember? nope! i think i should write more things down huh? anyway, i DID have an appt. thursday! but it was with my PCP who at this point is not sure what to think. he IS taking it seriously, but since i haven't had another "attack" we are not sure what to think. he referred me to the GI doc who i will see on thursday. my PCP thought i should have him look over the u/s and CT scan and see if he would interpret them differently. i appreciate that my PCP knows his "limits"...but dread yet another doctor's appt! so, i no news really. i just go to bed every nite and hope there won't be an "attack"! thanks so much for thinking of me and remembering. please also keep us posted on your news with your GI stuff! k? i probably would have put off all of the testing until the holidays too if i were you! i would have made the same decision you did! later alligator! emily

kate.... if celiac runs in your family....get it checked out!!!!!! it is worth it! it could be the culprit of your symptoms! (not bieng dramatic here....just definitely check in to it and rule it out!) plus, many of us benefit from gluten-free or dairy-free diets. blackwolf....more on why i did the diet later! K? i will try to rmeember! gotta go eat dinner! (speaking of food....) i am ruled by my stomach... emily

kate... the emotional thing is hard! plus POTS can mess with your emotions.... make sure your meds aren't the culprit either! always pay attention to see if you have mood changes after starting a new med (sorry, i am big on this one b/c i have had it happen several times now!) anyway, one BIG thing...this site! so, you have found one great place to make you feel connected to the world and less alone. most of the folks here are probably older than you but many of us are pretty darn young (if i may say so myself!) but you may find folks on dynakids more similar to you in age and experiences (school, friendships, parents) that you may not find here. as for mental boosts...i guess you have to search for things that bring you joy and go for it! even if it is something so little as getting those cosy sole slippers and heating them up and enjoying warm feet. watching a movie. doing a craft. etc. finding new ways to be since you may not be able to enjoy the same activities as before. every day is an emotional and a physical challenge! but you see to be doing pretty well for such a young person! keep us posted! sometimes it's okay just to be sad and grieve your losses though... later alligator! and warm fuzzies to you too! emily

kate... i have never heard anyone else use the term warm fuzzy before! i use that term b/c i went to a Friend's School when i was little and that was a term they used...so, i know that my fellow alums there know what it means but otherwise everyone looks at me a bit funny....so i was wondering where you learned that phrase!? it gave me a warm fuzzy to see it in print and see someone else using it! and by the way... welcome! emily

gena, i would be interested in recipes too! i try not to eat hardly any processed foods and mostly just stick with fruit, veggies, lean proteins and rice or potatos. no gluten and no dairy and some other things i am not sure of. my mom does all of the cooking and with my restricted diet and not eating processed foods it is such a chore! so, easy recipes....like harvest stew...sound yummy! please post for all to see ! (if you don't mind sharing!) emily

hey jess...are you thinking david is stubborn??? i told my mom about the idea and she was really excited! yeah! emily

steph, i am VERY interested in this for my mom. i have actually tried to get it going on ndrf and also locally, have tried to find a psychologist who would lead a group for parents of ADULT chronically ill children. no such luck. the only support groups available for caregivers--spouses or parents--seem to be for parents of very young children OR for children of elderly parents. neither of these was helpful to my mom. my mom longs for the support that i get here on this forum. and i long for her to have the gift of support that i get here. it is amazing. and it keeps me going. i wish that was available for parents and spouses. she has such caregiver burnout...i think it would help so much to talk to others. beverly....you and my mom are in similar situations b/c nicole and i are the same age and you are our primary caregivers...i think it would be great to start a separate group for parents and caregivers. steph...your idea is not way out there! in fact, i have been tossing the idea around for a long time...trying to figure out how to make it part of potsplace and as michelle. but i was stuck on the whole privacy issue. if there is a caregivers forum separate....we would need to respect that forum as pots folks and not nose in it! let our caregivers have that space all to themselves so that they feel comfortable saying what they really need to say! let me know steph...i don't want to step on any toes here, but i would love to help get this going and email/organize whatever would be necessary...i have been wanting this for my mom for 6 years now! we are all so incredibly fortunate to have eachother....our caregivers deserve the same! do you think spouses would have similar issues as mom's of older kids? just wondering. idon't think there are enough folks to start 2 groups. the benefit though of starting ANYTHING is that hopefully people will find folks that they "connect" with and can always branch off and email separately. our caregivers feel the same isolation we do. okay, well, another hot button issue for me that i am very passionate about! thanks for bringing it up...i was dragging my butt on it a bit (i turn things over in my head too long!) need to just get the ideas out there! emily

opus... i used to use those things for football games when i was still "healthy" but had such cold hands and was in the marching band. i didn't have the mittens but did have the hot packs. they sell them at any outdoor/camping store. yes, they get super hot/warm, but aren't that big of an area. also they can be exspencsive since they are a one-time use thing and well, they aren't super-environmental if you are concerned about that. i think those are meant more for outside use...? the mittens i have are just more for indoor comfort. they were under i think "spa mittens" or something. there was a spot for health stuff and then massage products i think. not sure. you will find them. they have spa mittens and spa booties. i gotta go...off to the doctor, but will write again when i find those mittens of mine. emily

jess???? i am feeling a bit worried about you as you haven't been on much the past few days...and you are usually one of our "star" posters....so....i wanted to make sure you were hanging in there...i know you haven't been feeling too great at the start of this pregnancy with the med changes. please let us know how you are faring... sending good thoughts... emily

rita, i get the "fight or flight" feeling that gayle describes. like merrill, i can't live without my ambien and it really helps chill out my autonomic system. i don't think i feel the sensation in my stomach...i feel it more in my chest, neck area. does that sound familiar to anyone? it gets more and more extreme the longer i am upright and basically is like the blood is draining from my head, neck, chest--anywhere above my heart--but at the same time creates this very uncomfortable edgy, anxious-type sensation...even though it is not anxiety. i can also often feel my heart beating in the center of my chest. i feel it right now...that "sinking feeling" in my chest as i get more and more tired and feel like i am fighting to get blood where it counts! anyone else feel like this? just curious... rita...hope you get a good night's rest. i hate that vicious cycle of a bad day, bad night's rest, worse day, more fight or flight, etc. etc. ugh! emily

corina, your posts are so good you would hardly ever know you didn't speak english as a FIRST language! it amazes me...you are even able to pick up on our slang and strange ways of saying things...or even to figure out POTSy...very impressive! you go girl! stacey, you deserve something to cheer you up!!!!! i am glad that this is making you happy....and i am so glad you got the ball rolling on this project. i think i am going to be broke just buying Dinet stuff for the holidays! hey, i like one-stop shopping! emily p.s. uh-oh michelle....we could have started sometihng bigger than we realized...like, hmmm....a DINET store??? with DINET shirts??? ooohhh...the wheels are turning...and probably your brain saying...whoa! too much work!!! eeek! sorry! don't want to overwhelm you! that wasn't the intention! it's fun though to see so much spirit and energy devoted to promoting DINET's mission, you know? emily

danelle... did you find any lawyers in your phone calls who would take on your case? i don't know other people's experiences...but my lawyer would NOT let me fillout any of the paperwork myself...he did it all for me b/c he said there was a way to do it and you can actually hurt your case by sticking in extra stuff....so, i just wanted to point that out since you asked about putting in extra info. etc....and did we have any tips. so, i don't know what goes in and what doesn't ...somehow i was able to let go and let this lawyer take over...what a relief it was. so, i think right now would be the best time to get the lawyer on the case. i think it may also help you get a hearing sooner? still, it is infuriating that you should have to become practically penniless before getting your disability. oh, the other thing that i was able to do...i went to the COUNTY ASSISTANCE OFFICE...which is separate from the federal/state folks doing SSDI...and was able to get medical assistance and food stamps WHILE my claim was being appealed. HUGE lifesaver to have the medical covered. and hey, those food stamps can make a difference too. they also have energy assitance programs, phone assistance programs, etc. so maybe that would hlep you get through? i don't know? i am just pulling any ideas out of my brain possible wanting so badly to help you. i also live in PA and unfortunately don't know anything about NC! as you can tell your situation hit on one of my hot buttons! people should not have to become impoverished b/c of disability! disability is a huge reason for people going into poverty in this country...and that should not be so. we must take care of all of our citizens! sorry. i am done now. but i hate to hear what you are going through. it makes me mad, sad, etc. etc..... i really flared up my symptoms after i got my denials too! oops! well, danelle, keep hanging on. you are really showing a lot of courage getting up and making all of those phone calls today. I do know that you will win...it just shouldn't be a system that makes people wait so long. if you haven't already though, PLEASE check in with your county/local assistance office and see what services might be available. even verizon, our local carrier, has a special phone program so taht low-income people can have a phone line....maybe these little things will help you to stay in your home until you win your case? i'm sorry i can't offer more...oh, they should also have a disablity advocate person working there for you to talk to....they might know a lawyer for you. you can ask them questions without hurting your case... off to nap! emily

yeah!!!! let us know how to order and pay you and all that jazz! don't forget to make sure you cover your shipping costs (now, corina, whose the mother figure here...he-he!) i just want this to be a success for you! i know it will be! the tag line is great...short and sweet and to the point and well, PERFECT! emily

Ernie, just like merrill your post has been on my mind and i hadn't posted yet...i really need to get my butt in gear right now and get me some lunch! so, until i can really post something meaningful...i wanted you to know that i have been turning over your post in my head and want to write something meaningful to you. you deserve a well-thought out post...that i haven't had energy for yet... so it is coming....until then, please know you are in my thoughts always and i hope these posts are helping ease your pain just a bit...that there are many of us all over the world (!) who are in your corner, caring about you from miles away! emily

mindy....$3 bucks is a huge bargain! you could charge more if you wanted to i think. but, i do know a lot of folks on this board struggle so much financially, that this would make it doable for them. it also means that maybe we will all just buy more than we would if they cost more! i.e. i would easily buy 5 at $3 a piece, but maybe only 3 at $5 a piece. depends if you want to make more money for your labor! and how much energy you have to make more angels! it's a hard one... what did you think about the tag idea? keep us posted. i can't wait to see the pics on the site katherine started! yeah, katherine!!!! emily

danelle, your post makes me so sad....you are carrying a tremendous amount of guilt over this. is your family making you feel bad about being sick? or are you beating yourself up unnecessarily. (i don't mean that flippantly at all!) many of us blame ourselves for things that aren't our fault. you are not to blame for this illness or for getting sick. i hope deep down you know that and are just in a bad spot right now...i feel a tremendous amount of guilt too, so i am not saying i have this all down! but, i do know we pile it on ourselves more than we probably need too. esp. at times like this when you feel so disappointed. i do hope you can hang on and hopefully be able to manage financially until you get through the appeals. you WILL win, it just will take more fighting. give yourself a little time to grieve and then see if you are ready to call a laywer... until then...please hang in there and keep us posted. also, maybe someone will know of a disability lawyer in your state, as mentioned earlier. emily