Friday, March 25, 2011

What the heck is the matter with you? Why are you always so sick? Why can’t you just get up and get over it? This is the story of me and my Dysautonomia.

I know that I have mentioned my condition here and there on my blog, but I felt that it was time to really tell my story and explain this condition. It’s too much to read in one sitting, so I’m going to break it up into parts.

Here’s part 1:

When I was diagnosed with dysautonomia in 2007 I didn’t even know what it was. Until a few months prior to diagnosis I’d never even heard of it. All I knew is that I was passing out all over the place almost everyday. I ached all over, had no energy, was so fatigued that words can’t even describe it, and had totally lost my quality of life. I was miserable….

I had gone through having a “mystery” illness all my life. I’ve been in and out of doctors offices and emergency rooms. I’ve had tests done on every part of my body. I’ve been told that I just need to exercise, that it was all in my head, and that it was just because I was hormonal and needed to learn to get a grip.  That was very disheartening and humiliating. I was diagnosed with Mitral Valve Prolapse when I was 16 years old (Most people with dysautonomia have it). I went through some horrible times but was able to live life. Everybody just thought I was “sickly” and a hypochondriac. While I was in college I passed out several times and had to be taken to the ER by ambulance. By the time I got there my heart was fine again. I’d go through these cycles but always rebounded after a lot of rest.

When I was 27 years old my heart started going crazy. It was beating so fast I couldn’t even count the beats. I could stand up and have a pulse in the 200’s. Again I was in and out of different doctors just trying to find out what was wrong with me.  I was so dizzy that I was blacking out (Remember this was 1997) and no one knew what was wrong with me. One night a good friend of mine was discussing my declining health with a nurse who mentioned the name of a fabulous cardiologist in Tuscaloosa, Alabama… I made an appointment and got worked in the next week. I was on the treadmill for a stress test less than 5 minutes when she said, “I know what’s wrong with you. You have inappropriate sinus tachycardia”. Huh? What the hell is that?? “It means that you have a deformed sinus node that makes your heart beat way faster than it needs to. You need a heart procedure done ASAP”.  Wow. I went from not knowing what was wrong with me to being faced with a heart procedure. I was 27, had 2 young boys, was married to a complete jerk and jackass, and was scared to death. That test was on a Thursday. By Tuesday morning I was in Birmingham with the man who pioneered this procedure called ablation. He examined my records and began explaining why I needed this procedure and needed it fast. He decided to do it THAT day…..Wow.

To be continued.


High Street Cottage said...

Wow! I feel like I'm getting to know you more and more Lou. I can't wait to read part two. My heart goes out to you. I am always so surprised by all the work you do around your home even though you face the health challenges you do, and am so inspired by it. I am going to google a few things you mentioned. So I can be more informed. xxx tami

High Street Cottage said...

Ok, stopped back by to say yep, Ablation is what my co worker had last year I believe. She also had the same heart issue. Looking forward to reading part two, tami

Julie Harward said...

Wow...bless your heart..and just look at all you accomplish in spite of are amazing1 ;D


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