Tuesday, April 29, 2014

bon voyage off to Mayo...

Okay everyone today I am packing and preparing for my next 2 days I will be spending at Mayo Clinic... tests and consults with specialists...So forgive me for not blogging probably the rest of the week... unless I find Wi-Fi and get a moment to get on here... I will do an update when I return home for sure! I have to have salty snacks on hand and I actually carry salt packets in my purse because you don't want to find yourself in a situation where you need salt and don't have it sort of like how a diabetic needs sugar... So I have made these bags of salty goodness haha and I also have my information for Mayo (medical records, medication list, log of salt and fluids and symptoms... it is a serious job and I am tired!




Today I saw my Primary care Doctor, informed her of the pre diagnosis of Postural Orthostatic Tachycardia Syndrome... She had a student in with her (which I didn't mind) ... She was not very believing and you know how I know??? She made a comment several times I see a psychiatrist and am seeking counseling (which is true) but that is NOT what is wrong with me! My symptoms are all over and crazy yes but I AM NOT...  I have also learned the diagnosis of Panic Disorder is more then likely a misdiagnosis and most POTS patients get misdiagnosed with an anxiety disorder before diagnosis of POTS. (Which is the proper diagnosis) my Psychiatrist is even on board with me... I know I do not have Panic Disorder, I have done a lot of studying and paying attention to my body and what it is telling me... Every "panic attack" occurs when I stand up and they are very random... or in the car which is idk why my body must not like being in a car very long sitting?? okay but I have been very paying attention and have come to the conclusion of those "anxiety attacks" are not anxiety attacks they are a result of my heart rate sky rocketing and my blood pressure dropping to the floor...I just wish doctors wouldn't treat me like I am just some crazy ... I know I am not and I guess it is time to gain some thicker skin and I probably will be looking for a new primary care doctor who is on board and doesn't try to psych. evaluate every thing I do... hundreds of docs have done this to me... why? good question if you are a doctor or becoming one ... please just LISTEN to your patient and don't automatically jump to conclusions...
p.s. I do not think I never have anxiety I simply know I do not have an anxiety disorder.

this is what I always think when doctors are dismissive to me..."Do you think I REALLY want to be this way? Do you think I like wasting time in doctors offices let alone the financial end of it and oh I can't work and it's all I want to do ... not having any life, no friends really that you get to see and Mom and Dad taking care of you at 21... uh no! I would much rather be healthy and live my life not making special snacks as you see below, not counting my sodium every time I eat, not counting fluid intake, no crazy ER visits, Hospital stays (that seem pointless) not constantly be making appointments and going all over the state for help, not monitoring medication all day long.NO! I would love to just be healthy even healthyish would be great!" I dang sure don't do this for fun...