dizzygirl

hey thanks lauren for the link and info.. wow that is very interesting..I"m going to share this info w/ the new cardio that i see in a few weeks..

Hi folks!! wasnt sure where to post. then i used some common sense and figure i'd post hear!!! Well after almost a year of fighting with AES (american education services--student loans) and my forms getting lost at dr.'s offices and in the mail.. then the first 3 app's being rejected for some reason or another.. well my fighting and persistance finally paid off..!! My PCP filled out another form for AES..a few weeks ago.. and I got a letter in the mail today stating that my application means the "criteria" for total and permanent disabilty discharge".. !! I was just like floored! I started to cry..I have been worried about how I was going to have to pay such a large amount of money back while living on disabily.. there was just no way for me to do it. BUt I had to share my news with you.. my loan is being dsicharged b/c of my POTS/Dysautonomia.. with the last application I mailed off I put inside the envelope a POTS brochure and DINET card.. and jotted down a note explaining POTS in laymens term. and so forth.. and said a prayer as i was closing the envelope.. SO thank you gals for designing the brochures!! and the website.. as I really think that it helped things along to explain dysautonomia!! So all my worrying and fretting this past yr. was for nothing!! My boyfriend told me that I really do have angels sitting on my shoulders.. b/c while I was going to school..I was living off of less then 200$ a month.. and had I not been inschool.. and recieved the excess money from the loans/student aide I would not have made it.. while I waited those 2 years for my SSI appeal hearing.. that money every semster is how I kept a roof over my head!.. So many blessing...in a weird sort of way .. ok I am crying again and the screen is all blurry.. so I am going to go!

cool a nice perfect fitting pair of jeans can really boost your self esteem! I know I got all excited this week.. when i tried on a pair of jeans that I havent been able to even "squeez into" in some time now.. and you know what!! they fit!! and were loose to boot!! that is 4 sizes smaller then what I was in!! YEAH!!

hey that si very cool!! let us know what number he is an stuff like that!!.. my boyfreind watches the races.. and I watch them with him sometimes too!! that is way cool!!! veryy good news morgan!

yeah during my TTT's.. ny hands as well as legs and feet turn pretty purple and get so cold.. I guess I am more frustrated then anyhting.. as I just want to able to cook or take shower or heaven forbid brush my teeth.. or sit up!! i think that maybe I need to talk to the Neuro about the numbness in ym hand/arm.. as it is getting worse. I get awake or sleeping.. thenwake up.. and I am totally numb.. and am shaking..I often will find my self when I wake up holding my left arm straight up in the air.. and I do this at times when i'm awake too.. and dont realize that I'm doing it (( ))).. I guess maybe i do it do get some feeling and something abck into my arm and hand.. i dont know.. I hate the not being able to feel things.. or the loss of strength and well lackof useage in my arm/ hand I just am at a lack of patients..and sensability tonight..b/c I really hate this pots invading my life! lack of postive thinking is morelike it tonight...

thanks for setting this up.. i think it will offer all of us to get a chance to know each other then in a potsy sense!! thanks!

Hi folks.. I am just like majorly irriatated tonight.. I attempted to amke a pot of stew for dinner..I made the darn beef stew.. but not with out fighting with my body first! It bugs me that I can even do simple tasks such as slicing mushrooms or peeling potaot's..let alone use my arms and hands to stir the pot!! GGGRRRR!!!!!!!!!!! I was slicing and dicing stuuf up and it took a total of 2 1/2 hours to get a pot of soup going! well etting to the point of my post.. it took so long b/c my hand/thumb kept going numb and and was sending pain up my arm.. well I had to keep stopping to regain feeling in the hand... I finally finsihed.. and my hadn is totally numb.. and totally purple.. even my finger nails are purple...purple all the way up my arm.. and its so cold.. I;m just wondering what you guys do when you get numbness and pooling in your arms and hands?? and what casuing the numbness? is the pooling casuing the numbness? thanks for listneing to me complain!!... I just get so frustrated that I cant even do simple everyday things anymore!! Melisssa did you find the body transplants yet??

thought I'd jump in on this one.. I have a powerwheelchair and it is fully reclineable.. and actually is comfortable for a wheelchair thatis.. its is a Jazzy powrchair..it does go all the way back and lays flat.. I need to call Monday though to see about getting the foot rest that comes up.. instead of the one I got.. Um I was able to get insurance to cover the full cost of the powerchair..(this was before all the chances to medicare and medicaid though..just before the first of this yr..) I had to go thru a PT eval.. and 3 doc had to write something stating that i did truly have a need for a reclining powerchair..(vs. a manual wheelchair) then provide documentation.. and my PT eval pretty much had the cat in the bag so to speak.. as my pots truly showed itself! But the powerchair are very exspensive.. this one cost nearly $7000 bucks...and it is BIG! it does come apart.. but the seat is so large that it doesnt fit in a normal size car.. actually inorder for me to use the chair outside of the home.. I would need to use a wheelchair service.. and it might fit on the bus ( there is wheelchair accessability there too) I understand peoples feeling about having or needing to use a wheelchair of any sort.. but I have found it to be very helpful.. and in a sense a real "lifesaver"..

hmmm.. well I think that the weight thing is some how tied in.. when i was a child and in early teenage yrs. I was very thin.. to the point that I was skin and bones.. and then when POTS sympotms real started to well be noticeable.. I' dgain weigh.. then maintain.. and go dowon or up.. when I was 15.. I went down quite abit in weight.. and was able to fit into a size 10!! with room in the waist. that was in january.. and by June I was wearing a 16!! Now I really do have a weight problem..being that I have gained a considerable amount of weight in just the last 9-10 months alone.. baffles me.. as I can barely eat most of the time!.. yet I gain weight.. go figure!! but yes I think that it does..

Melissa if you get any indication what might be casuing the flushed red skin and rash looking thing.. pls do send me a pm.. b/c I have the same problem.. and ahvent really got much of an answer to what really casues it.. only speculation.. and no it doesnt always itch.. my botfriend and I have found alittle bit of a pattern to the bad rash/flushing.. in that about 24-48 hours after it appears.. I have a bad syncope spell.. and pots is much worse... so I dont know something goofy going on..somewhere good luck

hmmm--green stuff is a genuine sign of an infection of some sort!!.. I would contact you PCP for some antibiotics.. sorry no suggestion for an itchy throat.. sorry!! you got any suggestion for itchy ears? LOL --my ears hurt badly.. and they itch inside the ear.. hope you feel better soon!!

Hi the lowest Bp I have seen for me was 45/23.. and I was barely conscious.. some days my BP will run about 50-70 over 30 something.. I have been in the ER with a BP of 61/33.. and they rushed me back and hooked me to a monitor andpumped me full fo fluids.. and the BP went up.. I have some wacky wacky BP readings.. once a BP of 150/0.. my BP is all over the map it is up and dwon.. If my BPis lower then 45/23 my monitor will not even pick a reading up and will repeatedly read error.. I would talk to your doc about your BP being low

Hi Jacquie I'm sorry that you arent feeling well.. that really bites!! Um about your sore throat.. did your doc say if your throat was red inflamed or anyhting?? I would contact your doc Monday if you arent doing better.. also I thought.. is the air really dry in your room/house?? with ti being winter and all.. the dryness can casue things to get dried out.. like the mouth/nose.. and has casued my throat to get sore at times.. (as the aair is dry drydry here ).. anywho.. have you tried running a humidifyer in your room??it will put some moisture in the air.. whcih might help you all the way around.. on the other end of things.. congestion in the head can casue the ears and head to hurt..and that is no fun.. my doc tells me b/c i cant take decongestants to use vicks,, halls menthol cough drops, and a humidifyer.. and of course to eat some chicken soup and really pump the fluids in so I dont get more dehydrated.. ans rest rest rest!! Um I also used to drink hot (decaf of course) tea.. with a "Halls" honey and lemon cough drops in it.. let the cough drop light melt in the cup of tea.. and Kinda just hold the cup towards your face I guess. and breath in the vapors of the cough drop.. that will helpw/ congestion.. and then once the steam is like gone.. drink the tea..its an old home remedy.. also for your ears. you can try sweet oil drops.. you can find them at walmart or anywhere really.. and stick the bottle of drops in a cup of warm water and let them sit for a few minutes so that the drops get warm.. and put some in your ear.. and then stuff some cotton in your ear.. oh and vicks makes Vics inhaler things that you stick in your nose and inhale.. and it helps clear the sinuses for a minute.. but I have found that those make my nostrils burn when I have an infection going on w/ bleeding.. so normal old saline nasal spray works to... Oh and feeling more dizzy and potsy when you have infection roaming around in your body does makes the body more uh active??..its adding more stress to the system.. I hope that you feel better girl! and call the dco back if you dont get any better

UGH!! i majorly feel like POO today.. and cant wait for antiobiotics to work!! its making my pots symptoms drive me more batty then usual .. and makes for a very grumpy and irritated dizygirl my poor boyfriend!!

The dragons are sleeping tonight YEAH!! just wanted to say thanks guys for the input.. i will definatly be talking to the doc about this.. thanks again! PS.. I dont go on the unside down table often.. its in the basement.. and I cant hadnle the stairs.. so its colecting more dust then anyhting else!!

I think that they have given me steroids in the past b/c they think I am having an allergic reaction to something.. which isnt to far fetched.. as i'm allergic to everything it seems!! I seen dr. G a few weeksa go.. and I had the same sort of rash. and I showed it to Dr, g.. (same kinda rash i got after my EP study).. and he said he thought that I might have an allergy to laytex..(as they ddint give me meds during the EPS study other then that stuff to make your heart tick fast..) I always have a this red skinned rashy look to my skin.. that you are talking about.. but other then Dr. G's suggestion of a laytex allergy.. nobody seems to know what casues them..or why the steroids make it go away comoletely its weird I know I wish that I knew or had more of an answer for you..if you figure it out let me know !!

HI Jessica!! good to se you on the board!! I have a suggestion or thought.. can you mom by chance take both of the boys for a night or a weekend?? so maybe you can atleast get one good nights sleep?? maybe that would help you feel somewhat better?? you mentioned that you are nursing the little one..can you use a breast pump..and refridgerate waht you have pumped.. so that the baby can go to gramma'a too? I really hope that you feel better soon!! HUGS Linda

wareagle.... i tried to have a hymodynamic blood vloume test.. done at the clevelnad clinic with dr fouad in 2003.. but. ((BIG SURPRISE HERE))).. they could not gain proper IV access. so they were only able to do the TTT.. Um they tried for 45 minutes if not longer to get vein access.. and in the end only ended up putting atiny IV in.. as a just in case for the TTT.. I have always been a hard one to get IV's into.. But I want to try and get another app set up for an other test at cleveland and hope that they can gain proper access.. i think that it would prove to be helpful.. and yes I think that fluids help blood volume too thanks gals for the support

hey thanks!! wha twould I do without you guys!! Hmm.. we have a rite aide here.. um.. the biggest grocery store we havea round erie is like wegmans and tops..quality.. and of course.. giant eagle! LOL I am going to call around tomorrow to see if i cant find these products.. and see what I like best.. thanks again!!

Is nexium otc or perscription?

Jenn- i live in Northwestern PA..part of the concerna nd debate going on about em getting regular IV done.. is the risk of infection.. like with a porta cath.. or they damage that can be done to the veins with repetative IV useage...Dr.is afraid of what an infection such as one that can occur w/ port acath would do to me.. sicne I am allready so sick.. they dont want to risk me getting "more" sicker.. but I am really pushing thsi issue now.. b/c IV fluid is the ONLY thing that has helped me even alittle bit.. and I am going to take every little bit that I can get.. so ireally just pushed it today. and NO is not acceptable.. and the insurance company better not give me any crap either!! geez.. I want my life back!! doc said that today that the insurance company is going to want to know why I cant just drink 1000CC of fluid everyday.. and I am like I allready drink over 1000CC of fluid a day and then some.. and it just doesn not cut it.. no matter how much I drink.. i can never quinch that thirst.. you should see the water bottles that have accumulated on the bedside stand!! WOW!! in aperfect world I wouldnt have to fight with insurance companies to pay for treatment of any kind.. and in aperfect world I wouldnt have Pots either!.. but this isnt a perfect worl and I do have POTS.. and I need the IV's!! Ok rant over..

Melissa i can relate to everyhting that you just said!!..I always always get a fine red flushed like rash across my entire body..its always there to some degree.. and it i get over heated.. I get really red skinned and bumpy.. and if I get cold the skin gets moreof a purpl-ish color.. docs have given me steroids, like medrol pack and prendisone.. and they do wonders for me.. but w/ prendisone.. you canNOT take it long term.. also when my hands get very cold i get the veins popping up in my hand.. more so in the thumbs and pointer fingers... I unfortunatly do not have many suggestions to amke it go away.. I have found that when my skin is really going wacky.. that if i take a cool shower and use Aveeno moisturizing bar soap.. that it helps lesson it.. and if i can do the shower thing.. I lay dwon in front of a cfan to cool.. even though I may not feelhot.. my skin will be on fire.. tis helps at times.. sorry i cant be of more help just wanted you to know your not alone on this one.. I have had these sorts of "weird things" going on since i was about 11-12 yrs old..so about 12-13 yrs..

hey wow thanks for all the idea's.. i'm excited variety!! YEAH! where do you buy "snapple a day meal replacements?"" and what are they? are they drinks?.. yeah I was thinking about gerber baby food as well.. but have diverted from buying them yet.. as my boyfriend likes to pick on me about having to eat baby food.. then i feel like a dingy for thinking baby food might be a good idea.. (hey babys eat it so there must be nutrition in and it must be gentle.. b/c well babies are eating it!!).. but I do buy hte gerber graduates animal crackers.. -LOL they actually arent bad.. even caught the boyfriend eating a few!! LOL.. how about that for irony!! thanks again for the help..maybe if i get some better nutrition going on while i am trying to figure out what is up with the guts.. i will feel better!! ah.. we can dream right??

hehehe! belinda.. thsi table is neat.. it kind remind me of a tilt table in some ways though .. you strap your feet in these things.. so that you dont slide out the other end!! LOL.. it find it helpful.. ahh only if we could live in an upside down world!! OOOCH!! you know.. I did not know that milk casued heartburn to get worse!.. my god no wonder it keeps getting worse today!!.. I have been chugging the milk down.. ( about hafl a gallon -- i really did not know that.. thanks for letting me know!) i'm not areal big milk drinker to begin with.. butat times i crave it in a bad way.. and ahve ta have it...that and it fills me up quickly too.. thanks for the tips .. probbaly time for a new heartburn med!!

Ok folks one more question here.. is ther something that I can drink that will give me some nutrition value?? afriend suggested pedia-sure.. I guess that I am loking for something that will give me some proper nutrition... more and more I am getting to where i cannot eat..even the really bland boring stuf.. as I vomitt even thing up or get diarrhea.. and severe tummy pain.. or all at once.. AHHHHHH!!!! But I am concerned about what the lack of food is doing to my body...and on the flip side what food does to the body! confusing.. baffling I do not need to gain weight.. wiegh enough.. but um..I just need some direction and in puts.. I have gotten ot the point where i ant even eat my yogurt anymore.. b/c everything taste funny and makes me want to puke.. and I really am not apicky eater... my diet now consists of bannana puding- cottage cheese- velveeta cheese.. thats about it. applesauce.. wow!! what a variety! doc havent found what is casuing such "distress" in me as of yet.. probably pots!