- CASE FILE
My name is Ashley, my conditions have gotten me cool names like Smashley. I am 33 and woke up one day and my quality of life was gone.
ABOUT THIS CASE FILE
My name is Ashley and I am 33 years young. I have been pretty sickly since I was a child honestly. I was diagnosed with Hemolytic Uremic Syndrome and spent a month or so in Childrens Hospital in ICU. I received 2 blood transfusions during that time. (1993) Since then I have had a few problems from it but overall made a recovery. When I turned about 25 I got diagnosed with SVT (Supraventricular tachycardia) I went to Arkansas heart hospital for an ablation but before the test started they did a tilt table test to rule out a condition called POTS syndrome. (postural orthostatic tachycardia syndrome). I now have pots and they were unable to fix the svt. They explained that it is an extremely undiagnoised condition that affects 80% of women. There is no cure, only treatments and usually caused by something underline. It affects the autonomic system. Anytime im not laying down my blood starts pooling in my feet and my heart speeds up (tachychartic) trying to get blood where it needs to go.blood pressure drops I get sick , dizzy and either passout or fall over, and break things like coffee tables. where the nickname Smashely started and stuck, with the pots and svt combined my heart is overworking all the time. There is research being done but with my disability insurance it only covers in state and there is a lack of drs with knowledge of this condition. I got through drs like crazy because they don't even care to understand it. When I filed for my disability any place for extra notes I wrote: I WILL TAKE A CURE OR A DR TO UNDERSTAND OVER YOUR CHECK.... I have 2 boys I brought into this world 10 and 13 but for the past few years live with their dad because most days I cant function or take care of myself. I get chronic fatigue which puts me down for anywhere from a week to a month. cant drive druring this time. Not sure whats causing it. Abdominal pain that goes anywhere from throwing up as soon as I wake up, to broken glass going through my intestines and my stomach gets hard and bloated like it could pop. I swell only down my right side. My periods are irregular ill start bleeding randomly and always cramp no matter what. I excessively sweat and have to take several changes of clothes with me places. Its not temp related I don't think and my hands and feet are normally so cold the go numb. I get severe joint and muscle pain. I get sensations that if my clothes touch my skin it burns like fire or acid. I hate this and I just want to feel better. Most of my drs are a 2 to3 hour drive which is getting more and more difficult. I appreciate what you guys are doing. living like this is too much and suicide isn't an answer but sometimes it would be better than suffering and being made to feel crazy. God bless you.