I have been diagnosed with POTS/Dysautonomia and Mast Cell Activation Disorder for a few months now. Among other things.( After 8 years of misdiagnosis and searching) I finally found a doctor that would believe me, know what is wrong.Also take care of me! I have not been feeling good this past week. And when I say I haven't been feeling good it means I am so sick I am confound to my house badly ill. Because when you live being sick all the time, there are 2 of me:a sick you (that manages doing some things) and the so sick me who is scared, in pain, having odd symptoms, laying in bed. I tried at first sticking it out in hopes it would pass. It didn't which sort of broke my heart and put me down. So now me and my Neurologist are emailing. My PCP where I live at is really not much help ( I think she just doesn't understand 100%) and I can never get in and then I end up at urgent care haha. They really judge me there. Having a disease 99% of doctors have no clue even exists leads to well, a war for patients like me. Hi I have Postural Orthostatic Tachycardia Syndrome Dysautonomia. They look at you like you are nuts and tell you, "you are crazy", " you need counseling" and they smile a sly smile while saying these things. Then they proceed to act like they have helped you out soo much just for ya know, being there. Some even have patted themselves on their back. I love it too when Doctors tell me I am just dehydrated and I don't drink enough water. The other excuse of course is Anorexia. (I am not that skinny) I am tiny 4 feet 11 and a HALF inches lol. And some have hearts and simply come out and tell you I really don't know what is wrong and I am really sorry. I love those kinds with hearts <3 even though they do not know or didn't know they still cared. That can really make a sick persons confusion and bad days feel better. When you are sick all the time with no answers, it is rough what makes it even rougher is when a doctor makes you feel bad or guilty or like you are truly crazy. I wish doctors didn't even use those words. But finally I found myself a neurologist and he believes me and wants to help me the hold up is, he is 4 hours away and has several patients. because when you treat a rare diseases... well there aren't a lot of those specialists. I have been thinking about my latest run in with urgent care haha I was told my condition was not "urgent" This disease brings a lot of frusterations and they come before diagnosis. you just hope after diagnosis that doctors will be understanding because you are diagnosed. well it most of the time doesn't work out but I am starting to think some of these things need to be changed and I need thicker skin. Doctors shouldn't ever be able to make another human being feel bad about being ill.
A lot of different people with different medical problems get told they are crazy.... I was crazy for 8 years before getting diagnosed with POTS. I even got diagnosed with an anxiety disorder at one point Check this out to see the statistics on a study or how patients were treated before diagnosis. (I think they need to do one on after diagnosis too) .
http://www.dysautonomiainternational.org/page.php?ID=184
ALL IF FAILS JUST LOVE YOUR DOGGY! OR ANY KIND OF PET YOU HAVE :)
they will make those bad days better always!
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