Jump to content

u don't have 2b crazy to have POTS, but it helps!


Lulu
 Share

Recommended Posts

In the continuing saga of a lunatic (me) who just loves to pass out, get poked with needles and have ppl look at me like i've sprouted a third eye when telling them about my disorder.......

last night i went to ER for IV fluids, per my PCP and Dr. G, for a temporary fix until we can figure out what is really wrong with my hydration situation.... anyhoo, i got into a fight w/ the ER doc !!(shades of Janine kicking every doc in sight flashing through my head).Oh, it was a pretty calm "discussion" but I was hot!! :) the doc said he didn't understand dysautonomia, but since all my vitals were fine, he wasn't going to give me fluids. i told him HE didn't understand, the fluids helped, we don't know why, and I was following my doctor's order and he could feel free to call him, AND there was a growing body of evidence from the past week (6 sticks and 6 L of fluid, each with the result of a feeling-much-better Lulu) that showed the IV therapy worked. well, YOU don't understand, he said, there's no reason they should work. NO, YOU, don't understand, doctor...and i impressed upon him that i hadn't come to the hospital because i couldn't get enough harassment in the rest of my life or loved being poked and waiting around. and NO neither of us understood why it worked but it did. then he said he would give me fluids, ok, sure. arrgh! i broke into tears when he left and felt like a complete nutball! it was like something from bugs bunny arguing with daffy duck (or should I say daffy DOC!) :P

when i got home, i gave my hospital ID bracelet (with the doc's name on it) to my dog, who happily destroyed it in effigy.

LOCK ME UP! I really think i'm losing it lately. :D

what is the silliesst/craziest thing you've done in pursuit of treatment or to cope with the lack thereof?

love and laughs,

lulu :D;):blink:

Link to comment
Share on other sites

I'm proud of you for standing up to the ER doctor. You did marvelously. You were a success, and convinced him in a logical, reasonable, courteous way. (You validated that it didn't 'make sense' and then you drew out your empirical evidence card! I love it!) It worked! Yes, because of POTS you feel like yesterday's wet laundry afterwards, and you cry, but that's secondary to your victory. POTS is disempowering, dismissive left-brain dominant MD's are a force to be reckoned with, and you were weak and sick to start with or you wouldn't have been there. You - did - it. You met your fear head on (that they would refuse) and engaged it in an appropriate manner and . . . drum roll . . . won your case.

The lamb can take on the lion.

Go Lamby Lulu!

Link to comment
Share on other sites

IV fluids (and you can tell the ER docs this) have been shown to help patients with dysautonomia for many verifiable reasons. They raise blood pressure and increase blood volume, for example. I believe Dr. Grubb has published some information re the medical benefits of hydration therapy. I would counter any doctor saying he doesn't understand why you need them by saying yes, there is a lot we DON'T understand a lot about dysautonomia but we DO know fluids help, and iv fluids help for these reasons:...... If the doctor is looking for a science based reason, give him one: our blood volume is much lower (usually) than the general popultion and the fluids help increase blood volume. There you go- good for you for maintaining your cool. Hopefully, you and your PCP can work out a solution so you can stay out of the ER.

Carmen

Link to comment
Share on other sites

Good for you!!! I know it is frustrating. I am seriously considering bringing all my dysautonomia info..books, internet print outs w/ me everywhere I go...Then I can say...See?? Read!!! In the mean time give me what I want!

Now for the craziest things I have done in a hospital? Well when I was 9 and in the hospital for evaluation of Migraines, Irritible bowel and a possible seizure disorder...I got sick of them not helping me so I ordered Pizza over the rooms intercom...I did not get the pizza.

Also once, at 11 after a spinal tap, and tons of tests and medicines in the hospital, I got tired of them poking me with needles (by 16 I looked like I had tracks for petes sake!) so when the nurse came in one day for the umpteenth time and then turned around, I grabbed a syringe and held it up!! Yea, that was pretty over the top...but I was a dumb kid and way over my limit. The result you ask? well the nurse backed out and got the doctor, while my mother sat in the chair and laughed and held me till I put it down (which I did right away). The doc then came in and said "it is obvious she has some anxioty issues..." ya think??

At 16 I called a nurse a vampire....It did not go over well. ;)

At 17 I decided I was allergic to doctors and began an avoidance stratagy which has helped me avoid these errr moments. B)

Link to comment
Share on other sites

thanks for the kudos, y'all! I see my doc today (fingers crossed!)

but really, what's the silliest thing you've done since your dx either getting treatment or because you couldn't? I'm interested in some stories where we can maybe laugh at ourselves.....i know it's tough....but lately i've found that laughter IS the best medicine.

so bring 'em on!

love and laughs,

lulu

Link to comment
Share on other sites

Hi Lulu,

First, kudos for standing up to the evil ER doc.

Second, the craziest thing I ever did to get treatment was threaten to sue unless I got a ekg and fluids after a scary episode where I had to call 911. As soon as I threatened to call my lawyer, they pulled out the IV kit and EKG machine. I don't go back to that hospital, now I have a good ER with docs that actually care whether I live or die.

Lauren: 1

Docs: 0

Link to comment
Share on other sites

Guest Belinda

Just recently I told the ER doc "Look outside the box for once" and made her feel like the idiot of course she then DID admit me for dehydration..I have learned to give them the "If you think I am crazy I will show oyu crazy..attitude with a pretty lawsuit"..I find the docs start listening if you a firm/VERY firm with them!!

At least for me...Good for you LULU!!

Belinda

Link to comment
Share on other sites

Oh Poor Lunie,

Got to love the ER staff B);)

I guess you didnt know, if you are not crazy b4 yu get diagnosed part of the treatment plan is to make sure your crazy within a year of diagnosis, at the very least to make sure you doubt your own sanity anyway.

I have not acted upon my impulses to purchase pointy steel toe boots yet but I get closer and closer every day.

The craziest thing I have ever done is yet to come, Ill let ya know, its gonna be good.

I have however called the doctors line at Mayo and duke and said "Hi this is Janine Rn, I need to have you fax me (med records, test instructions etc..) Dr so and so would like to review them. Now I didnt lie and didnt say I was from the docs office and I am an RN and my doc did review the info. I didnt even use a fake name, love the medical field.... my name is Janine the records were for Janine duh! But I accomplished what would have normally taken weeks if left up to the docs office.

:D Janine

Link to comment
Share on other sites

oh yea, and I fired a gyno once becasue I told him about my pelvic pain, which was probably related to my autonomic issues etc. He looked at me and said "and of course your husband is faithful..."

So I fired his sorry keester.

Oh my goodness! what a $*#@! I would have kicked him! That's insane!

Link to comment
Share on other sites

Janine

MAJOR Kudos for having the spunk to call Mayo and get your stuff faxed!! CLEVER. :D

And to whomever fired their Gyno, smart move.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...