Chronically Hopeful [Life with a Chronic Illness]

My introduction video,
Join me on my journey with Postural Orthostatic Tachycardia Syndrome, a form of a rare condition known as Dysautonomia. I plan to (if health allows) document my experiences & struggles (and hopefully a bit of fun in between!) to help people create a better understanding of this condition. I've always felt that because this condition is so misunderstood, it would be great if doctors or just family&friends could watch a video and see life through the eyes of somebody with POTS so here we go!

For more information on Dysautonomia, visit: Dynakids.org or Potsplace.com

Category:

People & Blogs

Tags:

• Postural
• Orthostatic
• Tachycardia
• Syndrome
• Dysautonomia
• POTS
• Kyli
• photography
• chronic
• illness
• life
• struggles

[ladygaia17]

hi i would love to get in contact with the girl that has made this video. I too have POTS but it's been hard finding a doctor that knows how to treat it. My family doesn't want to accept it and sometimes I too try to convince myself it's something else. I can really relate. I am conducting research and I need people who would want to help. I am tired of feeling sick and I am more tired of people treating me like i'm crazy. please email me back

[chronicallykyli]

hi guys! thank you so much for watching & commenting. i promise i'll have another video up soon - my energy level hasn't been great and i just bought a mac so i'm trying desperately to figure out imovie, lol. i have so many videos to upload though so expect them sooner than later! ::hugs hugs hugs::

XOXO, Kyli

[theombligosx4]

how long have you had pots? im 17 and have had it for 7 years, doctors at the mayo clinic say there are no cures but that it should go away on its own in a few years...

[MrsOlivier04]

Love ya sis You'll make it strong!

[MiraculousMoments]

Hi KyIi,

My name is Angela. I don't have POTS, but I have Cerebral Palsy and deal with many different things associated it. You are so inspiring and your voice sounds so hopeful. Thank you for spreading th hopefullness around to the world.

[hartjesr]

Hi! Wow you sound exactly like me! I'm 18 years old and was diagnosed with POTS about a year ago and no one knows what it's like or what I'm going through. Not even my family can fully understand. It's really nice, and comforting to know that I'm not alone in this disease and that others like you can relate to what I'm going through. Anyways I really appreciate you posting these videos! Keep doing what your doing. You are truly inspiring!

[tophatkat11]

Hi Kyli, I am also 22 and have pots syndrome. Everything you have said in this opening video is so true. I went through the exact same things. All the way from being completely healthy, and looking at a bright future, to barely being able to walk or function as a normal person would.

I know how hard it is to adjust to a 'new life' style. I am struggling with not being my normal self and not fulfilling my visions of where I wanted to be.

I would love to talk to you, support, etc.

~Kat

[ashfox123]

Kyli, I feel for you as I also have POTS. It is not fun. I am in Pittsburgh, PA. Thank you for posting your video journal. I will be adding some videos in the near future.

[christystgermain]

You are really helping us all! You have created vindication for so many that feel lost and/or unbelieved by the medical professionals. Thank you. Feel better soon!

[christystgermain]

I want to help. This has affected my life and my family's life drastically. I understand feeling crazed or being treated that way even more so, especially from the professionals. It's ridiculous.

[christystgermain]

I just got a Mac too Kyli. I completely know how you feel! Way to go girl on the videos so far. They bring tears to my eyes because of recognition and understanding of how frustrating it is! This summer, I was admitted to the hospital 5 times. I have gone to the Cleveland Clinic, Mayo Clinic just to have bills. Cleveland Clinic told me it was POTS. I think I kept looking for an answer initially because my doctor would not connect, give me guidance on how to live my life. I want to help!

[AHAHemo]

wow