why do I EVEN bother!!!

[dizzygirl]

Hi...

I am SO SO done with ignorant people I tell you!!.. I had another syncope w/ full body paralysis late this afternoon... and am trying to recover from it.. I really zonked out after it was all said and done.. same kinda thing that happend before..just as intesne.. and just as painful.. only it ddint last as long i dont think... but the pain afterwards it just horrid..

i called the oncall ppl that I am suppose to call when this happens... and they just cant understadn why I cant just drink fluid to hydrate my self.. (I'm thinking OMG! here we go again..) and that I am smart enough to know tht I have to drink more the 10 oz of water in aday.. to a point i can understand there reaction.. but they do not know me and they do not know the difficulties i have been and are having..

today was a very bad potsy day in general.. and I did try and force myself to eat and drink.. but the pain in my guts and the nausea and vomiting is full forced today.. and it sjust isnt possible...what I did drink and try to eat.. ended up coming back up..and casued such pain that i'm like Ok i'm done for now..

so in the end I am not getting an fluids that I need.. and I am MAD i hate having to deal with on call poeple who dont know a thing about me or dysautonomia.. and the rdueness is just unbelievable.. how can you work in the medical profession and be asuch a freakin Moron!!

so short of going to the ER.. and dealing with frick and frack.. to "try" and get fluids.. i am going to have to wait untill monday at the soonest..If one more person tells me to drink.. when I cant.. and they dont understand me at all.. I am going to scream!

my pain level is high right now that I coudl actually puke from the pain in my body.. (not the pots..) i have stinging/numb like feelings in my face. and in my shoulder.. and surges of that same feeling every where off and on.. i can not barely move my head to the left.... and my strength sint returning as quickly as i thought that it would....my body is weak.. the muscles esp. in my arms hurt and burn like holy He@%.. i feel like my muscles are on fire.. and there is still twitiching going on in my face and hands..my eye balls hurt! i feel like somebody punched me a few thousand times in each eye.. my entire eye (S) hurt. and behind the eye as well..the eye sockets bones hurt..

my head is pounding! and eeryhting just hurts so badly from head to toe.. and a certain idiot i know thought that it would be funny to toss all my pain meds in the trash...( ) so the strongest thing i have for my pain in tylenol-extra strength.. GRR.. and no on call doc is going to call in a stronger pain med after hours.. no matter what..

I am so angry.. and in so much pain (probably adding to the anger).. and i am going to stop now..

any one have pointers to get rid of the pain.. and maybe gain some useage of my neck again??

ssorry to be some gurmpy.. i'm just had enough today..

[Ernie]

Hi Linda,

I sent you a PM.

[Jacquie802]

Hi Linda,

I know when I am having a bad day (painful headaches and such) I take a tylenol and put the tv on (low volume!) and try to fall asleep. Do you have a heating pad?? Maybe that would help you out a little. Or you could try putting in a CD on low with wave sounds....sometimes when I am stressed out I do that and imagine I am in another place...like on the beach or something like that. I hope you find some comfort tonight and get a good night sleep. Take care.

Jacquie

[janineerrn]

When this happens I take a couple of klonopin and a valium and crash out. The only thing that seems to help is to drug myself and go to sleep and hope i wake up.

I totally understand, Im telling you we have the exact same symptoms.... seems like we react the same way too.

Get a standing order for iv fluids from your doc. Keep a copy at the docs office, the ER, and any local urgent care you go to. A simple order 2 L lactated ringers iv over 2 hours PRN or ns or 1/2 ns, what ever your doc sees fit. Then yu wont have a hassle. If you can get yourself up and to the hospital on days like today, before you pass out. the fluids will help.

Feel Better Hun, i know how bad i\t *****

Janine

[gdomaracki]

Linda,

I know how you feel, i declared this week the worst "pots week" ever for myself. I got the unfortunate opportunity of having my first paralysis episode, let me tell you i never ever ever ever want that to happen again.

Try to relax and think. . .that JUST maybe the sun will come out tomorrow!

Your in my thoughts and prayers dear,

Nicole

[Sunfish]

linda -

i am SO sorry that you are in so much pain & feeling so poorly these days and - while it's hardly much - just wanted to send you some great big pain-free (((HUGS))).

it truly is SO frustrating to be trying to take care of yourself (i.e. fluids) and have so many roadblocks in your way; i've definitely been there & it's more than a little discouraging, maddening, etc.

hang in there (i know-easier said than done),

melissa

[dizzygirl]

hi folks

ernie.. thanks!!

Jacquie--my CD player bought the farm last night.. no music for me!.. :( geez!

Janine--yes..I am going to get a copy of that letter the Dr. G sne to my PCP.. so I can show it to "witchy" Er staff.. and other rude medical professional..(shouldnt be called medical personel! if you ask me!!)..

this is probably going to sound stupid.. but what is a lactated ringer?...i probbaly know what you are speaking of. just cant htink well today..I hope that me and drippy (that is what I named my IV pump last month in the hospital..LOL b/c it is so clinical looking...I decided it needed a name.. and it needs to be decorated with some goofy eys.. and glitter and feather and sparkly things..maybe a little mini Boa.. needless to say it was like 2-3 am and the nurse was walking w/ me in the hallway.. and I was feeling better and being goofy.. ).. So I hope that me and drippy get hooked up SOON!!!

Ok you all probably think I am a nut case now name the IV pump/bag/pole.. But get a good mental picture( you all know what they look like!! imagine them decorated!! LOL Oh lord i'm loosiing it..

blondie.. I'm sory that you had a bad week too. hope that you are feeling better tofay

Melissa--thanks for he hugs!.. yes it truly is maddening.. probably why i am talking about decorateing things.. good god I am so tired..

I am still in quite abit of pain..awhole lots actually.. but on a good front I feel hungry!! first time I have felt hungry in like over a week.. so I'm thinking I have to take the hungry feeing and run with.. and pray that it doesnt make me sicker then a dog... ...as i really cant handle the tummy /gut pains this week..I am thuroughly exhausted. and my body is in a constant state of the shakes..

hugs to ya all

[Jenn202]

Gosh I am SO sorry you are going through this ordeal b.c I have been there.... I have needed IV fluids for years especially when I get down with a virus, or have a procedure done and I have had to fight for YEARS to get them to give me any...

I always would end up in the ER and have to go through all the crap to finally get a couple bags....

My POTS Dr in Boston after 3 hospitalizations in 2004 for IV fluids finally got the picture that there was NO WAY I could orally hydrate...

Then seeing Grubb he helped confirm that I could DRINK FOREVER and NEVER hydrate properly b.c of improper signals being sent to the different parts of my body... Way cant they GET it!!

Sorry to vent on your vent, but this topic always urks me b.c it is so ignorant not to give IV fluids when they will easlily give out pain meds, antidepressents and a slew of other toxic thiNGs without thinking.....

DId you try contacting a home infusion company?

I hope you can find some help soon...and I hope you feel better....

Take Care