THINGS THAT NEED TO CHANGE NOW!

Let's work together and make this happen!

XOXO, Kyli

PS- Sorry this is so over-edited & choppy! I kept coughing and losing my voice (from talking too much! LOL) & zoning out...and all those other fun potsy things!

Category:

Nonprofits & Activism

Tags:

• dysautonomia
• chronic illness
• orthostatic intolerance

[Stacey31233]

Loved this video :)

xoxoxo

[chronicallykyli]

@Stacey31233 Thanks Stacey! :)

[suitepeajen]

lol if a doctor doesnt understand the etiology of a condition then they dont want to talk about it! Very few doctors want to sit and listen and understand what you have to say. My doctor zones out with this blank stare every time i talk about it. I rarely go see the doctor anymore, except for prescriptions because its so exhausting talking about it and then they dont know what to do to help. I'd like to see more support groups out there. I dont know anyone with my condition that i can talk to.

[chronicallykyli]

@suitepeajen Did you join The Dysautonomia Connection yet? :)

[Scootchinman]

I was falling asleep before I watched this, now I feel like I could take on Bruce Lee AND Chuck Norris and win! Talk about impassioned!

POTSie secret weapon #1 = Kyli :-)

[chronicallykyli]

@Scootchinman LOL. Thanks Zeb! :) We can do this!

[ChrisVitchev]

I had half a aspirin and i felt like i was close to real troubble. I have a nervous system problem, most likley POTS but my goodness does it take ages to diagnose

[FallaciesDetective]

God bless us

and send us some embassadors (angels),

Michael Isack

(also on facebook)

[FallaciesDetective]

with CFS-patients the story and problems are veeeery similar, I just found out while listening to your video...

I suggest that on facebook we could start a group for cronically illies :)

on facebook it is also easier to CONNECT to all kinds of others,

"normal" friends and even support groups.

so my battle cry for today is:

let´s flood facebook and

let´s CONNECT the whole world

for fighting chronic disease -

especially unknown and hidden ones...

[glamorgangirl]

great video, people should be aware of this issue, bless you, ann: ))

[judielise]

Signed up on the new dys/POTS site. I will give what support I can. My son has been diagnosed with POTS and we did go through quite a bit to get here, but he also has been declared disabled by Social Security and we have parking tags. If I can help anyone, please ask.

Love your videos, Kyli!

[poetrygal1]

Love this video!!!--love it,love it,love it!!! Well said,Kyli :) --Cindy

[stillpressinon]

and with less equipment and further out of the way. Or do i go to one thats closer, that my insurance wont cover they have half ass care, or the hospital my insurance covers, but the doctors are horrible. I feel like i spend more time fighting to get them to give me proper and adequate treatment then anything else. I hate having to tell people i really am sicker then i appear. Why should i have to prove myself to everyone? why cant i go in and get the medical equipment i need without the stares

[stillpressinon]

This is defiantly an uphill battle, literally and figuratively. I know for me, it took 5 years to get diagnosed. And even with all the information i have, I am still treated like crap, but doctors, hospitals, ER's are the WORST!...i find it sad that when i go into the hospital the chance of me leaving with a positive experience is non exsistent. I will for the most part, be able to get fluids. But i have to pick which hospital to go to. Do i go to the one with nicer drs, and more understanding

[ashpauls]

i think its extremely important to spread the word! we get most of our help as well from other pots patients! and doctors need to learn just how debilitating and how badly they treat us w things that make us worse... especially other testing too for other problems!

[suitepeajen]

@chronicallykyli no i haven't joined, i had never heard of it until now, i will definitely join now.