Chronically Hopeful: [Sick on top of Sick]

[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!!

[jd450lh]

I'm a 54 yr old male and I can identify with many of the things you mentioned in your video such as being unable to tolerate most medication...getting extremely tired by just going to my doctor (it's only a round trip of 12 miles), but it totally wears me out. If I go shopping, I have to have my nephew go with me (he's 23), just so he can go around and get the things I need. These are just a few things I have in common with you. I will tell you more later.

God Bless,

Jeff

[SharkBateNait]

Oy, well I can't find a way to post a link here :-/ but, if you google "women's health problems doctors still miss" you'll find a recent article on CNN's website addressing what you guys are talking about and what I hear from the women at my support group too cheers

[poetrygal1]

Your video rings sooooooo true. I have dysautonomia and when my husband is with me I get treated WAY better and not like a nut case. He has been pulled in the hallway MANY times and asked if I have psychological issues.He was my advocate in the ER when I had a massive amount of blood clots in my lungs- I have too many ER stories to share,but hang in there!God bless :)

[ashpauls]

well now Im using my gramps old wheel chair so I don't need to cook on the floor as much lol, but I just use a big serving dish to prepare stuff on the floor or a cutting board, and only stand up when I have to check it on the stove. made a world of difference... doing dishes is what gets me the worst bc you're in hot water, standing still in one spot basically, that and the shower.. woo hoo for shower chairs lol.

[SoulsthatFly]

Hey, I'm a female, 16, and i have had POTS for about three years now. I had to deal with my school nurses always saying "It's all in your head"... they wouldn't believe me half of the time. I would get so upset about it. It's so hard to get people to believe you, and just to get them to understand how you feel. I get so frustrated sometimes... I don't think that anyone really understands how hard i am trying just to deal with this... I love your videos by the way! :)

[azulamarillo1]

i love your videos, and i have to say that i was really lucky with my doctor. He is really good.

my real problem is not with him, but with my family. they don't seem to understand what POTS is, though i have tried really hard to explain them... they tell me that i'm lazy and that i always exagerate, they don't realize the size of this. The only one who understands me a bit more is my mum, but my sisters, my father and some cousins don't believe how hard is dealing with POTS.

[azulamarillo1]

maybe you could use those high chairs like those that are on the bars and places like that, so you can cook and don't feel so bad :)

[chronicallykyli]

Thanks so much! I'm so glad you like my videos. So sorry to hear you had a Dr. Ignorance (that should be a new character!) Hope you're feeling well!

[chronicallykyli]

Exactly! I thought the same thing! Soo backwards.

[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]

like that, I just shut down. Then I come across as even more insane, ugh!

About independence, definitely! I am 18 and living at home attending community college, which my mom has to drive me to because I am unable to drive. I wish I had the energy to help more arounfd the house, and I wish I could drive myself, have a job, and be away at college on my own! Being sick has definitely greatly affected the amount of independence I have.

Sorry for writing so much, but I hope that helped!

[ChanShelly]

"well, all the tests the doctors have done on you have been normal so obviously there is nothing medically wrong" I was so mad she said that - it still makes my blood boil to this day! I also had a cardiologist from the mayo clinic tell me I was anorexic - he hadn't even met me, all he had seen was my height and weight charts. He brought two psychologists in the room and made them observe me. It was horrible! And I definitely went into that catatonic state you describe - when I'm around doctors

[ChanShelly]

As far as faking illness and not being taken seriously goes, YES! Before getting diagnosed, I had a few doctors tell me there was nothing more they could do for me but have me see a psychiatrist. I also had a group of my "friends" in high school decide I was anorexic, and they went to see the school counselor about it (and I had to go and visit the counselor throughout the school year after that). When I confronted the friends about saying I was anorexic, one said,

[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.)

[tobig2bagan09]

yeah im 18 years old and a boy and some doctors dont believe me on my symptoms and they are like take this and you will be fine. i keep saying i dont dowell wih drugs. they dont listen there there for the money. a lot of what u said i can relate to. we need to start a forum for everyone. like ho they deal with it and get some pointers.

[kiyone888]

i have been trying to get an diagnosis for awhile now with no luck because doctors think i am just making it up, or it's because i am a young women. i remember one a doctor said to wait until it started to interfere with my life, i wanted to scream at him since it was already making my grades drops, even now that i am feeling a little better i can not get over a C grade wise.

i do think women/young people do get taken less seriously when they are sick.

[chronicallykyli]

Don't give up on trying to get diagnosed! Keep fighting. I know how hard it is, ...that's ridiculous that he said "wait until it interferes with your life", obviously it already was because you were there in his office!So frustrating. (hugs) Stay strong, things will get better.

[xNikki713x]

I do hope you feel better soon though. :)

[xNikki713x]

Sorry to hear you're feeling so lousy right now. I definitely know what you mean about doctors not taking women seriously. For the majority of the last 8 years my mom has been the one coming with me on docotor visits. Since I'm starting to have to travel further to doctors, my dad has been the one taking us (my mom just feels more comfortable with him driving long distances) and doctors do seem to really listen to what I'm saying more than they have before. I honestly don't know why that is..

[chronicallykyli]

(Sorry if you get two comments from me, accidentally posted on my other youtube name that I use just for watching vids lol.)

Yuck...it's so frustrating, isn't it? Drives me crazy. Keep fighting and speaking up, that's all we can really do. (hugs) Hope you're feeling well!

[SharkBateNait]

<3 I've been thru so much of the same as what you talk about, you continue to speak my thoughts Once again enjoyed listening to you, if I get the chance to be more YouTube active (maybe soon) I'll try to return the favour of your great vids I've had to give up a lot of independence this year letting family step in and take care of a lot more for me; but because of it, I'm now closer to all my family than ever before, which ain't such a bad deal. :-)

[SharkBateNait]

My mom has become my full-time chauffeur too, I'm so lucky to have her help but some days it is TOUGH to give up just getting myself around town. Every now and then I actually take the bus just for the *fun* of it. lol - *sigh* ;-)

[chronicallykyli]

Okay, sorry if you get two comments from me - accidentally posted on my other youtube name that I use just for watching videos ! Oops. lol. I like your bus idea except the busses around here are a little scary lol. I agree with you about getting closer to your family through all of this. That's definitely one of the positives thats come out of this for me. Keep getting better, I want to see more videos from you!! :)

[SharkBateNait]

So what's scary about your busses? The weird people, or are they decrepid ancient busses that are guaranteed to get you killed?

[chronicallykyli]

Hey Shannon!:) I have no idea how I got through the 3 hour class. In the Spring I took a 2 hr class 2x a week, so I guess I've just been trying to build up to it. If I can continue to get through it would be great because it only meets 1x a week...(that's why I took it, thinking it would be easier to go 3x a week rather than 4 or 5). I make sure I get up and walk around & come back a lot. Its really draining though.

I'm able to drive short distances on my good days. (cont.)

[chronicallykyli]

It's just that it's a half hour drive to school & I get too worn out afterwards to sit there for the class itself lol...& I'd never be able to make the drive home. Driving is really exhausting for me and it's a shame because I love to drive...

[MiraculousMoments]

I don't have POTS, but have Cerebral Palsy, am a wheelchair user, and have something that REALLY resembles seizures. I've had all the tests - EEG after EEG (one of which showed abnormal activity) but doctors refuse to look into my symptoms, and help me find a cause. I have bad memory problems, and can't be exposed to strobe lights, because of it. I KNOW there's something wrong, and it's so hard when no one believes you and all you want is support and love but no one gives it to you.

[chronicallykyli]

Angela, so sorry to hear you're going through something similar. (hugs) It's sooo frustrating. Well you definitely have *my* support. I'm thinking of you!

[radlikemad]

i hope you're feeling better kyli! a 3 hour class?! that is AMAZING. i could never sit in a class for 3 hours straight! i think 1 hour would be my max. How come you can't drive? I have my license and am able to drive as long as i am not feeling horrible that day, and as long as it isn't for more than say half an hour at a time.