dizzygirl

Hi folks.. I despreatly looking for suggestions for those of your who have survivied a move recently or not so recently.. all of the packing is pretty much laying on my shoulders... I've been trying to do alittle bit at a time.. but I get half a box packed.. heaven forbid that lift or move it.. and I have to lay down and sleep for 4-5 hours! seriusly since my infusion thursday i have felt really really bad.. and I've been in bed fo days.. and actually a few days prior to the infusion too).. But i'm wondering how on earth I am going to pack up all my stuff.. I have people to move it.. but I have to pack it! my friend abby came up from warren this afternoon and helped me.. but I couldnt get up off the couch.. and i tried to help.. and she yelledat me to go lay back down!! lol.. (apparently I look like death warmed over according to her and my b/f).. any suggestions would be appreciated.. I have so much to do this week that it is making me tired just thinking about it.. exhausted is more like it....

Hi---boy do I understand what you are going thru! I fought for roughly 1 year before finally getting granted total and eprmenant disability.. they kept "loosing my applications".. and saying that info was incomplete.. then there wasnt enough information.. then the date of disability was wrong.. and on and on it wnt.. I finally did get approved though.. but majorly had to jump thru hoops to get it.. In the end I sent them letters from all my treating docs.. explaining my condition.. and I sent them information on pots.. as well as anything else that i thought might help my 'case".. along with yet another new application...and a personal letter from myself stating the deterioration of health and functioning.. and after doing all of that I got approved... try sending them info again.. I know pain in the rear!--and have it mailed to the certifiied mail.. so that thtye have to sign for it.. and keep fighting it.. I know it takes alot of time anenergy to do.. when we could be using that time and energy for something else.. but you are entitled to this program-waiver what its called.. dont let them bully you!! hang in there and good luck dear! dizz

yeah I know what youmean Julie-- hang in there!!! hugs' linda

Hi Julie!! Well waht i do is i take my BP first thing when I wake up.. even before I sut up in bed... and i take it before i go to bed to see if my pressure is high enough to take my night time dose of clonidine.. those 2 times of day are for sure.. and If I am feeling really really bad and majorly potsy.. I will check it.. but I try not to check it like alot thur out the day b/c i allready know its going to be way low.. and it just freaks me out sometmes.. when i get those really really low reading of BP an HR.. so If I were to offer a suggestion it would be in the morning first things..maybe midmorning after you've been up awhile and ahvie been moving around- then like mid afternoon early evening.. and bed time.. and then if you crash or something during the day or get really symptomatic then checkit. and yes keep a running log of you readings.. and take then to grubb/bev for your next appointment so that thaty can see what going on to better help you.. take care dear!! HUGS Linda

um thanks for the replys--i have an appointment to see my pcp in a few days..and am going to asak to be referred out to the cleveland clinic to see a pulmonologist... as I think that it might be my lung disease acting up.. causing me to turn blue... i'll keep you guys updated

well as I have read and heard thru word of mouth that there are between 500,000-1 million people in the united states that have some form or dysautonomia.. as far as people getting better .. there is no cure for POTS.. and it is a chronic illness. but there are people who do well with treatment.. and are able to live more productive lives.. and then there are others who can not.. for whatever reason.. pots-dysautonomia generally speaking is not "suppose' to shorten you life spand... but it certain can make life not so fun at times.. and hard to cope with.. good luck to you on finding a doc to treat/properly dx you..

I'm awake..getting ready to go into the hospital for an IV..and I tooke my Bp.. its low as usual.. and I'm feelin' potsy.. well look in the mirror.. and around my lips they are kinda blue looking...like where you would put lip liner-- and the rest of lips are that gross pasty white purlpely color... is this a potsy thing going on?? I have had blue lips in the past.. actually my whole face will turn blue on occasion..my parent witnessed this a few times and freaks them out big time.. smurfgirl

hi folks thanks for the info!! i am not worried about the test I was just wondering how it went.. as if i have to stand i'm thinking mmmm.. not a good idea!! think they will let me put hot sauce on my eggs?? I"M KIDDING!!! lol Not that i want there to be things wrong.. but I hope that they can get to the root of my GI troubles soon..b/c i am feeling way green!!

amber you are fine!! Support adn encouragement is the key!!

Validation is a wonderful thing... makes you feel like you are alone in the world!! and that you arent nuttty!! I'm glad that you doc and your friend understand what its is like for you.. alittle understanding goes along way!! BIG HUGS linda

ALLRIGHT!!! the sand man droped by your house too and doused you with some sleepy sand!! YEAH!! I know thats all i've been doing for a few weeks is sleeping!! SLEEP GOOD!!! Insomnia+Pain+flu=====BAD!! i'm so glad that you are sleeping decent!! sweet dreams Nina!! linda

YEAH!! that is great!! I'm so very glad that you are feeing beter!! HOORAY!!

Hi Nina-- no it is most certainly not the first time i have had this happen.. it was so intense this morning-- sometimes it doesnt matter how many times its happened in the past.. only that it freaks me out big time sometimes!! It was pretty much my head feeling like it was floating.. I normal get full body- out of body experience.. when I have slipped into shock or had allergic reaction to meds and things.. and recently all the time just about when I have syncope and full body paralysis.. it bites!!.. I full float out of my body.. and am able to see myself below as well as the room that I am in.. its is freaky to say the least.. I'm hoping that after having a full spine MRI. and sending it of to some top notch Neuro ppl that it will be helpful to explain some of my neck things.. and all those noises in my head!! LOL-- persephone-- how are you!! I've seen dr. Grubb and bev on the whole body paralysis and they are at a loss too of waht is going on.. I'm having a EEG done next month..(again!!!_I told the neuro it was pointless) to check for seizures.... I'm like I dont think that I'm having seizures.. but yeah I would like to know why I paralysis.. adn why its so gosh darn painful!! I'm still feeling wacked out tonight-- and I'm thinking that i'm not going to take my night time BB's as my pressure is till low low low-- I think i am going to go in for an IV tomorrow.. at least then i'll feel decetn for a few hours!!

mmm- I dont think that my ears are infected.. as i am the queen of ear infections and a good part of the time I can tell if theya re.. But ALWAYS when i go the docs and they look at my eears there is always fluid behind the ear drum.. regardless of weather or not they are infected... I should also mention that I have had as evere potsy headach for days now.. and there is alot of pressure at the base of my skull.. and stuff.. and when those get bad.. if makes me ears hurt.. and feel full..and I have been running a low fever since friday.. os I wanted if I'm coming down with something.. I hope that i am not.. as i cant handle another severe potsy crash right now!! some of the noises in my head are very high pitched.. and some are the buzzing and humming stuff like this morning.. last night it was high pitched.9in the evening)

HEY that is GREAT!!----YOU GO GIRL!!!! :)

Hi ya this morning I was suppose to go to the hospital for a test.. and I woke up and was like ...a (adizzygirl).. I hadnt even opened my eyes yet.. and I had this horrible loud buzzing-humming sound in my head.. it kinda sounded like a refridgerator that was about to have lift off..I felt majorly disconnected from myself.. like my head was disconnect from the rest of my body.. UGH! strange feeing.. that I dont quite know how to describe.. my boyfriend woke up and asked me if I was allright .. I told him No.. and told him how I felt.. he was like well you are not going to the hospi to have the test done.. this was before I took my BP.. so I'm still laying there and..(i sleep with my BP machine in bed..LOL --so i can check it in the AM before I get up...).. well my BP was nice and low... 70/43-- and my pulse was not even pushing 50....I felt like I was dying or something.. I felt horrible and told my b/f that and he said not to talk like that.. But I felt horrible.. I re-checked my BP and it was 77/43 p.52.. and I seriously felt like I was going to pass out.. I ddint even dare to sit up.. and I tried a BP one more time.. and it was reading error.. so I said screw it.. its going to be a real potsy kinda day.. and i chugged some water.. I had passed out this morning in bed sometime after 3;30am.. I was laying there and got the same kind of disconnected feeling.. like my body parts are not well there.. espeically my head and arms... and I got this Jolt feeling thru out my body.. and them numbness. and hello i was out.. the world went black... and less then 4 hours later.. it was happening again.. after my middle of the night thing.. once i came too.. I had clicking in my neck .. and it was driving me CRAZY!!! and my ears hurt rreally bad.. and they felt very full of gunk... and the buzzing..GRRRRRR so I'm just wondering if any of your experience this?? and am I loosing my marbles?? I think for the second episode that my HR being in the low 40's really played a role in my feeling like pooop!

Hi folks I am scheduled to have a gastric emoptying scan next tuesday morning.. I was just wondering what exactly is involved in this test.. I do know that you have to eat radioactive eggs.. EEEWWWWWWWWWWW! i hear that t there is no taste to them.. but it still kinda grosses me out!! YUCK! any input would be appreciated!!

WAhoo!! So glad that you are home!!! take care dear!!

BIG HUGS!!! hang in there dear.. something is bound to be figured out eventually.. hang in there!! Hugs dizz

since she is a chikd.. her mom would have to call the social security office.. and apply for SSI benfits for her daughter..more then likely the young girls mom would be her payee.. since she is under 18yrs old. But yeah--she should be eligible to appply for SSI.. SSI is for kids..as well as folks who havent put in enough money to qualify for SSDI.. SSDI-- is for people who have worked and put in enough money I guess.. to get a bit more then in money then you would get on SSI..you have to provide information just as you would for an adult.. But yes.. I would let her mom to call the SSI office and get the ball rolling.. I was on SSI from shortly after birth until i was 18yrs old.. and got booted off and then got back on when I was 22.. Oh yeah and if the child is on SSI.. they are eligible for state medicaid automatically.. I think.. good luck to them!! linda

I am posting tonight asking for you folks to pray ---or for additional prayers_ for our soldiers in Iraq.. or whereever they are right now... As I saw my brother last night.. (he is a soldier- a veteran at the age of 21).. he was very upset as 2 of his commrad's 2 of him friends were hurt during there second tour of duty thru Iraq.. (mind you they are 21 -23 and under..).. his one buddy was hit with shrap-nell (sp??).. and his other friend got hurt...(specifics are unknown to me right now).. only that this young man is now paralysed.. My brother (god bless him).. served his country and iraq and was not hurt (physically).. He was only 18 yrs old when he went over there to Iraq... he is now 21 (about to turn 22).. and he is incredible.. a very strong young man.. and very brave young man... He just missed by one day of having to go back to Iraq last year. to serve another year if not longer. the day before is Unti recieved order to ship out.. he got his order that he was being discharged from the army.. and missed it by a day.. of that isnt god working I dont know what is.. But I ask b/c i know how I felt having my "little" brother over there... and the emotions that i went thru and that i imagine many of you went thru or are going thru.. to please pray for our soldiers!! I watch the emotions on my brothers face last night and my heart was breaking for him...he knows better then anyone what they are going thru.. and the power of prayer in more powerful then some might think... So I ask that you pray or send out good vibes what ever you do for faith and encouragement.. light a candle. anything.. for My Brother_KEN his 2 freinds of the 101st airborne--screaming eagles--one f which is home now and the other still in a hospital... all of our soldiers and our soldiers families.. My brother is my hero..(he was long before he ever served in iraq.. that only added more pride and admiration)-- he is an incredibly strong young man.. who seen he (and I our) own kind of war zone long before he ever went to war.. and I'm so proud of him for many things.. So please light your candles--pray.. hang more yellow ribbons--whatever you do... my brother is still on active reserve duty for the next 3 yrs.. so he can be calld back up at anytime.. and this terrifies me.. thanks!

belinda that is SOOOOO! funny!! i forgot about that!! lol!!! dont know why it sounded so good but it was!! mmmmmm.. Its allmost noon.. and I stil feel ok... I'm wondering if I want to dare try to meet my mom for coffee.. (her coffee..me water.. ).. I dont want to over do it and crash.. but I do want to enjoy feeling human and not potsy!! LOL I slept really really well last night.. I watched alittle TV.. and feel asleep.. I slept a good 10 1/2 hours! ernie.. I know isnt it!! amazing how something to simple helps so much!!..WAHOO!!---abd eating is always a perk especially if it doesnt make me sick and put me in pain!! and I was so hungry only didnt realize it till i attempted to eat last night.. I hadnt eaten well in days.. the day prior I think I had like 4 chicken nuggets.. and attempted a piece of pizza (it was straight up Nasty!! )..

BEE!!! are you still feeling like a bowling ball head?? I'm sorry that you are still feeling like poo!!!!!!!!!!!!! I wish i had some words of wisdom for you.. and that i was here today to talk to you! call me anytime tomorrow I'll be home ok..(packing!)...I know how upset you are over your app. being cancelled and I would be too dear.. it doesnt make sense to me that they'd cancell your appointmet.. but hey... what of pots does make sense?? hang in there dear!! HUGE BEAR HUGS FOR YOU!! would it helped it i mailed you apic of me looking goofy w/ stitch on my head??? hmmm huh huh would it??!! its pretty funny!!! i'll try and email it to you!! hang in there dear.. Iknow you've seen diff. ent's pulmo guys is there anywhere else you can go in Ohio?? what about starting to apply to vandy and mayo.. just to get the ball moving on that front?? did you do that yet?? CALL ME K!!! love and hugs the incredible Jello blob SMURFY girl!! lol

thanks folks!! well i had my infusion.. geez!! what along day!! I just got home.. (its quarter to one in the morning!).. they gave me thw option of staying over night.. but it was SO HOT there i couldnt stand it... and I had a roomie who's familt was there and it was LOUD!! UGh.. so I'm like no thats Ok I'll go home and sleep in my own bed.. its more comfoy then this thing i'm laying on! But anywho.. I go the Liter of fluids.. it did help.. about 3 hours into my infusion i was able to eat with no problems.. no pain no nausea no vomitting.. nothing!! and boy did I stuff my face!!! food is GOOD!! even the hospital food tasted allright!..lol wow i was hungry!! But I really started to feel better.. about h alf ways thru.. and just as i started to perk up and feel human..and my brother walked in my room... I was SO surpirsed to see him!! I havent seen hom in MONTHS.. a good 6 months at least!! he was like why is it everytime i see you you are in the hospital?? lol.. but that totally made my day!! on top of getting some fluids!!.. I think had they ran 2 liters. and over a quicker time frame that I'd feel really good!! But this really helped.. and atleast I will have a decent night w/o feeling sick allnight..! HOORAY!!! believe it or not but my BP did Not go up at any point during my IV.. it dropped! and they wouldnt let me have my evening dose of BB's b/c they are like we do not want to have to call your cardio b/c your flatline on your BP... its low enough as it is.. so they made me hold my meds.. and I got tachy!! I was like geez!!!!!!!!! But I stil feel allright... so my b/f treated me to whopper burger from burger king on the way home..HMMMMMM yummy.. its been like ages since I had a whopper and i had forgotten how much I like them! I ate and knock on woods no tummy trouble yet!! HOORAY!! So on the way home I had to start singing.. YUMMY YUMMY YUMMY I got food in my tummy!! YUMMY YUMMY YUMMY i GOT SALT WATER IN MY VEINS!!..lol.. my b/f cracked up laughing.. allrighty well i'm going to enjoy me feeling human.. and curl up with a good book...it truly amazes me how much of a difference this makes.. virtually every time.. I dont get the logistics behind it only i'm glad that it helps!! a veryhappy dizzygirl!!

I have never been aboe to drive.. I get around by city bus..9though not so mcuh anymore.. i pass out of the bus rides.. as some of the bus rides are about 40-1 hour long into the city..UGH) I now use the Lift.. which is a transportation thingy for persons with disabilities.. or my b/f drives me where i neeed togo on rare occasions when i leave the house...