Chronically Hopeful: [Sick on top of Sick]

My longest video yet ! It's more of a rant than anything else, really. Thanks for letting me vent, youtube! I filmed the majority of this last night & today is going a little bit better :) I have a feeling that I'll keep recovering this week & be back to myself very soon. I was tempted not to talk about this and let this Potsy period in my life become a distant memory, but then I remembered just why I started this channel. To openly discuss all aspects of life with POTS - not just the triumphant, happy times, but the times where you feel completely lost & hopeless as well. It's so important that we let people know the truth of our illness - that while so many of us are strong, positive people, the reality of POTS is that it's hard, it's isolating, and it can break your heart over & over again.

I'm going to be okay though, so are you guys :) Hang in there! I know a lot of you are struggling because the change in weather is not always kind to us! It'll pass.

Oh! & please answer my Talk About It questions. I'll probably be posting more of them in future videos. I want to create a lot of discussions & give those of you too sick to post videos of your own the opportunity to share your thoughts and opinions. Here they are. Please post your answers in the comments section.

1-What happens when you get sick-sick?
2-How do you get through long classes? (Or work, or anything that requires remaining upright!)
3-Have you ever been accused of faking your illness?
4-Women, do you feel you're taken less seriously when it comes to healthcare?
5-Do you tolerate prescription drugs?
6-How do you keep from getting lonely?
7-What are your favorite cures for boredom?
8-Is there anything you'd like me to discuss in my videos? Open to all suggestions!
9-Has POTS greatly affected your independence?

Alright guys, looking forward to hearing from you!!! :) Lots of new videos soon. Some of them I'm really excited about putting together.
XOXO, Kyli

Category:

People & Blogs

Tags:

• POTS
• dysautonomia
• chronic illness
• orthostatic intolerance
• healthcare system
• gender equality
• headaches

[ashpauls]

Hey girly! I'm so sorry to see you so down.. but I understand everything you said. When I go into the dr.s with my dad... they do tend to offer more options for helping me... my dad's pretty intimidating though hehe. And yeah.. I deal with the are you really sick? are you really passing out? thing all the time, and it's hard when you live on your own, trying to just deal with daily things that need to be done let alone have a social life when your sick.. I cook on the floor & use a walker lol

[chronicallykyli]

How do you cook on the floor? I need to know! That sounds wonderful. lol. I get so worn out cooking sometimes. It can be exhausting, but it's one of those things you have no choice but to do!

See...my dads not even really intimidating...although he'll definitely voice his opinion when he needs to.

[ChanShelly]

Oh no, I'm sorry you've been so sick! I hope you start feeling better.

As for me, I am terrified of getting sick because I know that, like you, I will be reaally sick. Since I'm in school that scares me a ton, because I know I will end up even more behind than I already am.

Getting through long activities is difficult, but much easier if you are not doing it on a day to day basis - like, I can push myself as long as I will have about 3-5 days to rest and do nothing after.

[chronicallykyli]

Shelly, I was accused of being anorexic once too, four years ago. They sent in a psychiatrist and I had to pretend to be the happiest person alive for her to leave me alone. It really is so frustrating. I'm soo sorry you went through that too. You should be so proud of yourself for getting through that and for going to college. I get down about having to be driven there, but I think we need to give ourselves so much credit just for doing it :) (hugs, hugs, hugs) Hope you're having a great week!

[dkateri]

So sorry you've had such an awful time, hope youre feeling better soon. Have not been accused of faking but was told I was wasting time and I'd be ok in a few days - took 9 months to struggle back to work. Its certainly made out that Im overreacting, they dont have the slightest idea of the effect it has, and though the 1 medication Ive tried does no good, they arent interested in looking into others. Basically, they ignore it. As for boredom, thank goodness for laptops and the internet.

[chronicallykyli]

I know! What would I do without my laptop! Hope you're feeling well and don't be afraid to be assertive with your doctors! They should look into other treatment plans for you and if they aren't willing, try to find someone else who will (I know they're hard to find but they're out there.)

[sarahdionna]

If I go to a male doctor, I am only taken seriously if another man is with me. If I go to a female doctor, I am almost always taken seriously. Right now I only have female doctors and it's great!

[carriefrates7]

I am 17 years old and was diagnosed with pots just a week ago. I have been sick, not-well, since I was about 4 years old. Once I got into High School it continually got worse. I had been checked for TONS of different illnesses from things from chronic fatigue, acid-reflex, to lupus, or a neurologic problem. I have had the SAME exact experience with doctors. Obviously since I am under age I have almost always gone to my doctors appointments with my parents but it seems like if it was just me and

[carriefrates7]

My mom that the doctors wouldn’t take us seriously. They always acted like my mom was just an over protective over dramatic worried mother who was upset over nothing. They thought that she made up a lot of my symptoms and always treated us very rude, my dad started taking work off to go with me and my mom to my appointments and whenever he is there the doctors take us seriously and don’t accuse me or my mother of lying about how I feel. It really makes me angry

[nonebutourselves]

Aren't doctors fun? I kind of have the opposite reaction you do after going to so many who just think I'm crazy. I get so anxious that my blood pressure spikes and I cry super easy when discussing my symptoms because I'm already so worked up about the possibility that I won't be believed. So then they definitely want to send me to therapy, lol! Never tried taking a man to the doctor with me, but overall, it seems like male doctors are a lot more likely to take me seriously.

[neuropoet3]

Yes - I've had the same problem with doctor's not believing I'm sick... AND the experience with being treated better when my husband is with me. In fact, often if I call a doctor I won't hear back - but if my husband calls for me he'll hear back right away. Of course, he doesn't like me driving now, so he's always with me when I go to my appointments now since he takes me - yay for being married to a wonderful man through thick and thin for over 14 years! :)

[musician340]

hey keep your chin up! I was sick two years ago with a nasty inner ear infection that left me dizzy and nauseas for almost a year and after being relatively healthy (despite catching colds more then the average joe), I am now battling something else! It's been 5 months on and off with various symptoms and I need to see an immunologist @ the end month because of abnormalities in some blood tests, so you're not alone!

[coolgirlee]

Wow! your videos help me feel a lot better. I can relate to you so much. You somehow keep me motivated. I am still trying to convince my doctors that there is something wrong with me. He still doesn't believe me. In fact, he only thinks that POTS effect older people! For god sake i have more education than that doctor!

[24ducks99pigs]

Can you please delete my comments on this page kyli, what I wrote came out wrong, if not then thats cool, thanks and get well..=)

[24ducks99pigs]

Same here Kyli, I dont watch tv much. I do all these things to try and clear my sinuses. I ordered some iron supplements just incase I am low on iron, but u shouldn't take too much or it can killl u if u abuse it too much. I used to take multi-vits. I also took B12 for a while, but that made me smell bad, but I normally smell bad so, lol. It was like take B12 and look good and smell bad or stop taking them, u know. I love ur vids Kyli, get well soon! :D

[KatherineBee13]

When I get sick it's like death-sick. My husband teased me about it forever since most of the time I drag around the house or hospital, but he gets it now. I tried not to schedule long classes in college, but when I had to I tried to take breaks, bring water, snacks, and have accommodations. I don't tolerate prescription drugs at all (I seem to have every side effect ever) so it's hard to figure out what works. Thanks for your videos!!