shannon Posted December 5, 2008 Report Share Posted December 5, 2008 Things I Wish I'd Known When I First Got Sick- Doctors don't know everything.- If people choose not to believe me, that is their problem. This is my reality, and I know my symptoms are real.- It is okay to listen to my body and give myself a break when I need to.- I am not lazy. I am not blowing this out of proportion. - I do not need to be the "disability hero" who never asks why me, who never complains, who just keeps trucking. Sometimes I need to be angry. Sometimes I need to complain. Sometimes I even need to cry. And that is okay. That does not make me weak or selfish. It makes me human.- This illness will impact my life and shape me in many ways, but it will never define who I am. I am not POTS, I am Shannon.Now add your own to the list, folks! Quote Link to comment Share on other sites More sharing options...
hollie Posted December 5, 2008 Report Share Posted December 5, 2008 WELL SAID!!!- I don't have to prove myself or my illness to anyone! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted December 5, 2008 Report Share Posted December 5, 2008 THIS IS NOT A PSYCHOLOGICAL THING! It is a physical condition that effects my psychology.You cannot think this away or even do or not do this to yourself.Document EVERYTHING, keep ALL test results. Quote Link to comment Share on other sites More sharing options...
Heiferly Posted December 6, 2008 Report Share Posted December 6, 2008 While some doctors look at us as though our test results and symptoms can only mean one thing: alien from the planet mars, we have so much in common when we network with others with dysautonomia. Quote Link to comment Share on other sites More sharing options...
Tessa Posted December 6, 2008 Report Share Posted December 6, 2008 - Doctors do not know everything and cannot remove all your health problems.- Keep ALL tests results - Learn all you can about your health issues.- This is not a psychological problem.- This is not depression- Never allow doctors to give you a drug without knowing what it is and why they want to use it...... LoveTessa Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 6, 2008 Report Share Posted December 6, 2008 Hi,This is a genetic disorder and I will never be cured.Don't trust doctors off the bat. Let them prove themselves first.Believe in yourself an trust your guts feeling. Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 6, 2008 Report Share Posted December 6, 2008 I wish I had known: - What the autonomic nervous system was and what it was supposed to do - that compression hose help prevent blood pooling and greatly improve my standing time - about DINET - to keep ALL medical records - to stand up for myself and never do anything I was uncomfortable with, no matter how much the doctor/ tech/ nurse pressed. - to ask lots of questions and do some of my own research Quote Link to comment Share on other sites More sharing options...
sheba Posted December 6, 2008 Report Share Posted December 6, 2008 So what if I don't feel like doing my chores today there's always tomorrow.Who cares if what people think of me because Im not able to continue my career anymore.As far as doctors I really don't give a hoot if Im a doctor's worse nightmare. Quote Link to comment Share on other sites More sharing options...
jump Posted December 7, 2008 Report Share Posted December 7, 2008 I wish I had known:- That just because people tell me I'm fine doesn't automatically mean they're right and I'm just making it up.- Frankly, I wish I had HEARD of POTS sooner!! I spent four years feeling like a freak, with all these strange, seemingly-unrelated symptoms.... and then I finally read about POTS and I was like, OMG, that's ME!!!!- That this is not about hard work and stick-to-it-iveness. I'm used to being able to "knuckle down" and work my way through any problem. Hard work helps, determination helps, but it's not going to CURE me. I have to accept this to a certain degree, even while I work hard to find ways to help myself out. Quote Link to comment Share on other sites More sharing options...
carinara Posted December 7, 2008 Report Share Posted December 7, 2008 I wish i would have known earlier that:i shouldnt believe people when they tell me that it's only a "mind over matter" thing, when i feel dizzy and sick all the time and that i should just try harder (i was a master in trying harder anyway)That it's ok to ask people (mostly family) for help if ist needed and don't feel bad about it.and that i dont have to put so much pressure on me + have a bad conscience because i cant to all things by myself anymore. That when i plan things beforehand because i know off my limitation, it has nothing to do with being anxious. Because it seems to some people that not being able to just jump up and do things sponanioulsy, means being anxious and nervus, BUT THATS NOT TRUEI wished i would have known about POTS 10 years ago when it all started. My daughter was a baby then and i felt so sick almost all the time. Quote Link to comment Share on other sites More sharing options...
ladyt Posted December 7, 2008 Report Share Posted December 7, 2008 loved our list shannon...positiv thinking is positiv, but its not a cure....!! Quote Link to comment Share on other sites More sharing options...
yogini Posted December 7, 2008 Report Share Posted December 7, 2008 Learn to accept your condition. This is not going to go away quickly and may not go away at allThis is not the end of the world, you can still have a life with POTSRead everything you can so that you know all the symptoms and treatmentsBe willing to experiment with different medications, supplements, etc.Get thorough testing and comptent medical help - this may take a lot of work to findGo slowly with adding or changing medications - don't try to do too much at onceDon't be afraid to ask questionsBe prepared for a lots of ups and downs and rough periodsPace yourself with activities and don't push too hard. Learn your boundariesIf you gently push yourself, you may be surprised at what you can accomplish Quote Link to comment Share on other sites More sharing options...
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