DancingLight

i already know people that angels would be perfect for! that is a great idea. do you think you could put a little card/tag on them so that when we give them to people they say that this gift is also helping to raise money and awareness for DINET? also, could say on the tag "thanks for being an angel in my life. this was purchased in honor of your caring and half of the proceeds will go to benefit blah de blah..." you get the idea. sorry if that was too nosy. i just think they would be the perfect gift for people who watch out for us....and love us and are our angels through this illness. thanks for sharing your creativity with us! what a gift! emily

HIP HIP HOORAY!!!!!! i hadn't thought about giving them as gifts...that is a good idea! will have to get thinking on that one! emily

opus...oh poop...i just looked on gaiam.com and those things are like $48 and they aren't even the scented ones. they look diff. though than the ones i have. will try to remember again to look at home! i guess i got them for a gift! oh, and i don't like those booties! they are only heated part of the way....so not worth the splurge! emily p.s. i hope this makes you all laugh...my dog is lying next to me and he has some seriously bad gas tonight! stinky!

okay, here goes...those mittens...they carry them at several places. but, i haven't ever seen them cheap (sorry!!!). i sometimes hesitate to post that i have some of these things b/c i feel guilty and want to buy them for all of you too! b/c with this illness...a little bit of comfort goes a long way...! opus...anyway, i did find a pair i love that heat in the microwave, are heated on both sides, AND they are aromatherapy with cinnamon and clove and stuff. i am at my dad's house for a few days so i don't have the mittens here with me...will have to look at the brand. i do think that i got them from www.gaiam.com, but am sure you can find them cheaper somewhere else. maybe even at like bath and body works? they are getting more popular and i am seeing them in more catalogs lately. will look when i get home. corina...don't give up on typing! we would miss you too much! i can't imagine though how hard it is with the language barrier! anyway, maybe heating everything up in the microwave is an american thing? we are weird here sometimes! but, there is all sorts of stuff you can heat in the microwave other than food...and lots of products like heat wraps and stuff. the cultural difference gave me a chuckle...(in a good way!)...it's not something you necessarily think...i wonder if people in other countries heat stuff other than food in their microwaves!? well, i am off...i am pooped. later alligators. emily

danelle! AAAAAAAAAAAAAARRRRRRRRRRRRRGGGGGGGGGG!!!! that is so disheartening. i have to go to eat dinner. but wanted to say really quick...HUGS sent your way! i don't have time to get philosphical right now!!! (maybe that is lucky for you huh?) but....YOU MUST APPEAL and GET A LAWYER! what level are you at??? it may not take a whole nother year or two to get approved.... please HOLD ON TIGHT k? and i will try to write more later... emily

dingy=dippy or flaky.... i am this a lot.

corina... my favorite are the slippers! do you get cold feet??? i have searched a lot for the "perfect heated slipper"...no i'm not kidding on this one! anyway, a lot of them i don't care for b/c they don't heat the WHOLE foot. these do, and you can walk around in them. they seem expensive, but aren't anymore expensive than say a pair of the leather/shearling slippers...wchih don't warm me up! anyway... it is a canadian company... www.cosysoles.com let's just say, i have gotten my money's worth...i wear them EVERY DAY even in the summer in the air conditioning when my feet are cold and the rest of me is hot! did i say i love them? anyway, if you are interested in any of the other products let me know. but this one is my favorite. as is the hot water bottle...an old fashioned, economical favorite. can be used anywhere! feet, hands, tummy...to make it more indulgent you can buy a hot water bottle cover that is soft cotton. so, i am not getting paid or anything to promote this company. i read about it in a list of other companies that sell heated products for hands and feet. i shopped around all of them, and found this one the most satisfying product. i just want to save other folks the energy of searching endlessly for a product that isn't exactly "mainstream!" let me know if you get some stuff! and how you like it! emily

nina, nina, nina...what are we going to do with you??? i wish it was as simple as them mixing up the right and left! but, since you have an in-house expert, i know that is wishful thinking! well, i know nothing about clips or anything...so won't even try to solve this one! later alligator! emily

goldiedance! yes, yes, yes! i am always alternating b/w chills and sweats. i am 29...but my mom teases me b/c i get night sweats like i'm going through menopause. my problems with chills and sweats worsen with the intensity of the "potshole" that i am in. the worse my other pots symptoms are, the worse i am with temperature regulation. i sweat through my clothes and it is so embarrassing. and any exertion or excitement enduces sweats. then, as i get too wiped i start to get the chills. (i.e. talking on the phone with a friend...i will start out sweating, then proceed to get the chills). i don't have any good tips. my chills and sweats are not related to whether or not i have an infection or anything. i get them anyway. but, of course worse if something else is going on. i have HEATED EVERYTHING! i am comical. heated slippers, heated neck wrap, heated hand thingies, electric blanket, hot water bottle, you name it! the other day i had all my microwavable things on at one time...quite a site! one thing that is hard for me is that once i get cold, i cannot get warm on my own...i have to have the hot water bottle or slippers or electric blanket. layers of blankets or socks won't do b/c i can't produce the heat myself. but, then of course, i get hot and wake up sweating. but hey, what are you going to do. i have not had as much of this lately, thank goodness. but i still am always hot or cold...rarely "just right".... how's it feeling to be gallbladderless these days? do you think you have any infection or something from that? is this a new symptom for you? for me it has been present from the very beg. so i know it is POTS. but it is worse if i have a cold or something too. later alligator! emily

i LOVE it!!!! that would have been a good bracelet idea too! (no worries nina...i still love what we are doing on ours! ) thanks for sharing! emily

amy, i don't know anything about cymbalta...i fear i am falling behind on my research these days! oops! please let us know how things work out. i hope you will not beat yourself up too much about not being able to breastfeed any more... your baby is blessed that you breastfed as long as you have and had that "special mommy bonding time."...but also, i think the flip side is that when mommy is happy baby is happier too...you know? so that is the flip side...that taking care of yourself is taking care of baby...and is most important at this point. you are not less of a mom for making this decision! k? i know, easy for me to say....i'm not a mom....but i have a mommy who isn't good about taking care of herself and that makes me sad b/c i'd rather she take care of herself and give up something she does for me...you know? so, that's my sphiel for the day. i hope you are having an okay day. and hanging in there! please keep us posted!!! emily

julie! i LOVE your avatar...i gotta do one of those! i am so clueless though! i know, nina layed it all out for me... anyway...i hope the antibiotic doesn't make you feel more lousy! i hate taking them. i am glad that the doc took you seriously and that you went in. i do cough and feel like someone is sitting on my chest sometimes. but it has been better lately...don't know why. but, i don't have wheezing or anything. i just feel like...don't you have enough on your plate already??? it just keeps piling on huh? i guess a lot of us feel that way right now...ugh!!!!! if it's not one thing it's another (sorry stacey, stole that from you.. ) i don't have any tips! sorry! just wanted to send you hugs... later alligator! emily

okay...so i am a bit confused.... i remember researching the crotchless hose thing...but it think i remember that they had to be custom made??? not sure...but that costs a small fortune... still, not to get into too much information here...but i never figured out how they would really be helpful...i mean do you just wear them without panties? or wear your panties over top? neither seems too comfy to me! hmmmm....let me know if you have solved this dilemna! okay, so a little humor for the night...but i am confused on this one! never thought about the seamstress idea though blackwolf...good idea! emily

tearose, i commend you for fiding a psychologist to talk to you and taking that step. for me, that support has been invaluable! i don't know why the disability process makes us feel so frustrated, angry, etc...but i found it, like you, to be one of the most demoralizing experiences of my life. the whole system is created and run in a way that really makes you constantly feel like you have to justify yourself and explain yourself. i also found it so exhausting. i also had horrible experiences the whole way...when i met with the judge, i received my answer later and was not approved...and the things he wrote in the report made me cry and cry and yell and yell. basically...he said i was LYING about being sick, and b/c i could knit or do a little hobbies on the side, i could work full-time...including in a job such as a hostess! can you imagine working as a hostess for 8 hours with this illness? it wore me out in high school and college before i was sick! sorry, didn't mean to go off like that. but it is a process that does make you feel very vulnerable. i mean, these people have access to every single piece of your medical record. you are exposed to strangers. at least that is how i feel. these things that we hold sacred and private, become "public"...i also feel that way with the medical profession and some doctors...it's like here's my body and it isn't sacred any more! eeeek! so, i just wanted you to know that you are not alone in feeling such intense emotions. the good news is that you WERE believed by the judge to begin with. and you have a lawyer. it is out of your hands for a while until you hear for sure...and that sense of power loss and loss of control are also very hard to deal with! the waiting is so hard. these are the times, if you are religious or spiritual...i try to give what i am feeling to god b/c i don't have control and have done the best that i can to create the desired outcome (in this case your disability approval)... i don't know, the whole process IS demoralizing and devaluing. i am not sugar-coating anything today am i???? and you are metukah! what am i thinking? well, i really just wanted you to know that i know in the end it WILL work out and get approved...but the process IS hard and NO fun! so, i am sending you hugs. let us know when you hear! emily

oh tearose!!! thank you for using your precious energy "points" to post that! do you make yourself take those 10 minutes of each hour and rest or meditate? i like that whole system a lot and think i will try to implement it. i do think though i might have to fiddle with it a bit...i.e. the environment i am in or the activity i am doing might make something have higher points....i.e. today i actually WENT out to lunch with my mom...more exhausting though than being home for that same number of minutes/points. you know? i do need to look at ADL, food stuff, rest time, etc. and COUNT them, no say i didn't do anything....b/c as you know, some days the fact that you get up and get dressed and eat something is a BIG DEAL! i would like to hear how others use this point system too! you sound a lot like me in that ADLs, food time, and rest take up a lot of the day! i also have to watch and maybe schedule in points for something i look forward to or enjoy...not just the sick stuff or daily stuff, you know? well, thanks! i am off for my nap time! i have to have that 1-2 hours in the afternoon or i am a disaster! emily

geneva... i hate to bug you more...and if you don't have energy to reply...no worries! i was wondering if you could guide me to an older post on the point system... or explain it a little more? like, how many points do you assign a shower or eating a meal or going to the mailbox? or going to an appt? or feeding the dog? i need a baseline. i think it would be so useful for me. b/c i say the SAME thing as you...'i didn't do ANYthing today...' but that isn't true. you are right about different people taking mroe energy on the phone...gotta stay away from "toxic" situations...but it is hard! i can FEEL myself hold my breath, tense up...not good! how many points would you have on a "good" day vs. a "bad" day? no worries if you don't have time or energy to explain. we can discuss it at another time! i just got intrigued by it all... hope you are having a "good" tummy day! emily

beverly...(and nicole!), i am short on energy right now...sorry...but wanted you to know that i am reading your posts and keeping up on where things are for both of you...my heart aches for you both. my mom and i are so close and she has also always been my caregiver and advocate...so i feel a special connection to your story... i just wanted to say that i have definitely had fatigue that is absolutely unbearable and it seems like it would take all of the energy in the world for me to move. there are times i haven't even hardly been able to turn my head or roll over without getting dizzy. and forget any noise like the tv or radio or any conversation! i'm sharing this so you know you are not alone...b/c i find that to be the hardest part...thinking i am alone in this! as for the compression hose...the advantage is that if you can get them on, it may help stop the cycle a little (i.e. give the energy to be able to get up more and not be lying down as much)...the first few times with a new pair they can be hard to get on. you can use rubber gloves to work them up her legs. but, i don't find them too difficult to get on. you could also start with a much lower compression, which wouldn't be as tight...or even like the over-the-counter ones that are 12-15 mm/Hg...just to see if it might give her a little more oxygen to the brain! i put mine on right away in the morning and take them off and get ready for bed. they DO help me to get out of bed in the morning. also, i wear the waist high and the thigh high drive me a bit nuts...so it is definitely personal preference. aahhh, what to do, what to do. ugh! but, now reading that it could make reflux worse, makes me wonder if i should try thigh high again (i don't have reflux, but hate the pressure on my belly!). aaahhh, rambling. need to stop and hit the sack myself. nicole....i admire your writing and artistic talents. i know you will find a way to use them. i like to write too....as for visual talent! not there for me! i wish! i tried pastels...kind of comical! geneva...i haven't been on the board very long and didn't know about the point system thing. that is really great. i need to use that. and maybe explain it to my dad...who is like, 'what did you DO today?' i'm like, 'i got through the day! i got dressed, i ate lunch, i fed the dog!' aaaack! sorry, didn't mean to vent. the point systme seems a good way to pace myself better on good and bad days. well, i wish i had a magic wand beverly and nicole. i hope your body starts finding its way back out of the spiral soon...i know it is terrifying and disheartening. and i don't always know what triggers it...whcih is so frustrating. keep us posted... later alligators! emily

tearose... i am already enjoying getting to know you through your posts! i know you were a seasoned veteran...but were away as i was getting into the site...so, i am glad that you are back! i LOVE your term "potshole"...all one word. it is perfect. "i am in a potshole right now"...love it! danelle...i'm in this potshole with you! emily

hey stacey! that really does sound miserable...i don't understand why your teeth are breaking. how very frustrating. i just wanted to send you hugs b/c you are having such a rough time lately! ugh! i would hate the dentist too if i had to get a root canal! emily

hey geneva! i haven't found a "food" or "eating pattern" to go with my middle of the night attacks. honestly, i eat a bedtime snack almost every night! and that doesn't seem to be it. i do keep food logs though, so i may go bakc and look it over again and see if i pick up on something more. i totally understand needing a little break from it all and not scheduling anything yet! it can get exhausting and sometimes we need to take a break. for me, honestly, being chronically ill is a full-time job...and sometimes, i don't think i don't take the time to let myself NOT be doing something related to that! ugh! so, relax, recup from the weekend, hope your husband is feeling okay, and then update us when you know more!!! how does that sound??? emily

THANK YOU MERRILL!!! i was just at the dentist the other day...and thankfully, my teeth are one part of me that seem to be fine! he said to me, i'm so sorry you feel so terrible...but your teeth look great! he is the nicest dentist in the whole world! i wish you could all go to him...no more dental anxiety! i love going to the dentist! i might not be saying that if i need carbocaine though, huh? emily

geneva, what did you decide to do?? are you also having your gallbladder checked out? since you said you have middle of the night pain too? oh, man, we are a pair...the u/s completely wiped me out too with the no food, no water thing. i couldn't believe how much it took out of me! emily

danelle, i don't think i have anything at all profound to say! and no awesome quotes like merrill....love those merrill...esp. the MLK one. i can only say that like you and JLB i feel so frustrated right now after more than 6 years. often i feel like i am worse and not better. i don't know if i should share that or not, b/c it isn't "uplifting." but, i also want you to know that you are not alone in this. and i am so sorry you are struggling so much. any moment of not feeling terrible for me is this huge gift that i try to hang on to b/c it doesn't happen much! i keep plugging along like you say...but i feel your pain that it is hard to enjoy things when you feel so awful. i go to a spiritual counselor and today he was so interesting b/c he told me that it wsa okay to be mad and angry about being sick. sometimes i think we put so much pressure on ourselves to stay "up" and be brave...i know i do...always cracking jokes, smiling, pushing through every day, etc...but sometimes maybe we just need to let it out! be mad, be sad! i don't know. i just know it's hard, and i wanted you to know we're all with you hoping you have better days soon. somehow, we will find our way out of the bad spirals. for some of us it takes longer than others, but in the end, i think we will have better days! that is what keeps me getting up every day...(although, i have to admit this rainy dreary weather along with feeling like crap, makes me want to stay in bed and curl up and nest!) sorry i don't have more insight...i just felt like i wanted to let you know i'm thinking about you. man, i wish i could be harry potter and wave a magic wand and we could all feel better. (maybe i should be hermione though, she is a bit cleverer and seems to remember her spells better! ) okay, off to bed, please keep us posted...even if you need to vent again! otherwise we will all be worrying...you know how we are! he-he! do you think worrying and pots go together? later alligator! emily

Thank you so much for all of your helpful replies! What a world of difference it makes to me to have your insight and support! Here's where things stand...can't get in to the doc until next friday! I find that very frustrating. I also hate that I call and call and no one calls back. The triage nurse is so nice, but I don't know where the process breaks down. The nurse for my doc is not so swift sometimes which is frustrating. Usually email is the best way to get a response, but no luck. I did however, email today and ask about getting the HIDA scan if at all possible before my visit next week. I would not have known to ask about it if it wasn't for this site! Thank you to each of you for sharing different experiences! Morgan...the pain didn't seem to be localized or stay localized and was in both upper and lower gut. I have a lot of that soreness above my belly button too like you describe. I feel like there is a big mass on the right side of my abdomen all of the time since this all started. Or like something is pinching. It is hard to describe. But it doesn't feel right! I have only low-level nausea and discomfort outside of the attacks. But also have started having a lot of discomfort after eating and stuff too. The burps ONLY happened during the two nighttime attacks. I am someone who almost never burps! It is kind of a joke with us in our house, b/c it is so rare. With this stuff, I wasn't burping anything up like with reflux but they tasted soooo awful and made the nausea a zillion times worse. The pain was non-stop and worse when i went to (or thought i had to) go to the bathroom. Also, I have felt so toxic...like I used to feel before I started clonidine and before I figured out food intolerances. But have not changed anything there. hmmm....and am more exhausted than usual. Could this all be related??? Morgan...man, i hope you feel better soon! tell chloe to take it all away! your post made me crack up though about your GI doc! Later alligators! Nap time! emily p.s. to those of you have gall bladders that don't function very well...i don't understand why they won't take it out??

karen, yes, i did have hangover at first...it just wiped me out completely (remember however, that i am very low-functioning to begin with...so my baseline is low!) but is is soooo good for helping with sleep. i don't think it makes me more tired during the day now, after i got adjusted to it. as for the effexor...yes i do think it helps with fatigue. but i haven't been able to tolerate more than 75 mg without feeling more anxious and agitated and unable to sleep. but, as for anti-depressants...it was the only on that did not make me MORE tired, so that is a plus! it can interfere with sleep, so hopefully the clonidine will balance it out. the first time i was on effexor i thought it gave me a huge energy boost, now i am not so sure. i don't even take it in the morning anymore, take it in the eve...and it is fine. i think you used your mommy's wisdom well! and started her on one drug at a time! it's just too much to figure out what's doing what otherwise!!! and, not to mention hard for the body to adjust! let me know if you have more questions! emily oh, the other site is www.ndrf.org