The ramblings of a human piece of flesh who has a chronic problem with passing out due to Ehlers-Danlos and dysautonomia. On the internet; I get myself into unintentional predicaments that make me quote the great James McNulty of The Wire, "The fuck did I do?"

 

So I’ve started working out again. My cooze is healed up enough now that I’m going swimming every other day. My biggest problem is that my grandma has moved into the house and the food she eats is nothing but ice cream, eggo waffles, and cookies. My mom keeps on ordering pizza and Italian all the time. While one of my biggest goals is trying to get my stamina back after pretty much being bed ridden for half a year; I want to lose weight but all this food is making it so hard to control myself. I’ll come back from a vigorous swim and carb binge because my body is screaming “OMFG I’M DYING” and sucks up any potential carb loaded food. My grandma is below 100 lbs so she can eat whatever the fuck she wants but a blow of vanilla ice cream makes me gain like 10 lbs. Picture represents what happens after I work out.

So I’ve started working out again. My cooze is healed up enough now that I’m going swimming every other day. My biggest problem is that my grandma has moved into the house and the food she eats is nothing but ice cream, eggo waffles, and cookies. My mom keeps on ordering pizza and Italian all the time. While one of my biggest goals is trying to get my stamina back after pretty much being bed ridden for half a year; I want to lose weight but all this food is making it so hard to control myself. I’ll come back from a vigorous swim and carb binge because my body is screaming “OMFG I’M DYING” and sucks up any potential carb loaded food. My grandma is below 100 lbs so she can eat whatever the fuck she wants but a blow of vanilla ice cream makes me gain like 10 lbs. Picture represents what happens after I work out.

Oh boy

I just did 25 minutes on the recumbent bike. I over did it considering 2 weeks ago I wasn’t even working out nor had I worked out in years before this. I had a lot more strength than I thought. Pretty damn good for a person with dysautonomia who can’t go to public gyms because I’m a liability and nobody wants me on their machines.

Thing I hate about conventions…

In order for me to walk around like a normal human being with out fainting is taking salt pills and drinking a shit ton of water. Problem is that I retain the water and blow up like a blimp. Makes me super self conscious about getting my photos taken because I can tell when my face fills up with fluid. Makes me look bigger than I really am. But it’s that or either having low blood pressure and being stranded in my room for the whole con.

"You’re tired? How about you just drink some coffee or energy drinks?"

ARE YOU FUCKING TRYING TO SEND ME TO THE HOSPITAL?!

FREAK OUT!

So I wake up from a shitty nap because my chemical burn hurts so bad. I feel really cold and sluggish so I decide to check my blood pressure and it’s 83/59 with a 71 pulse. That’s the lowest it’s been in ages and I had to make a mad scramble to get my blood pressure back up. Salt pills and miso soup with half a can of Coke to slightly increase my heart rate so the blood can get pumping. I had a freak out because I was reading the lidocaine webmd before I went to bed and it said that too much topical spray and make you get hypotension and bradycardia. Plus I had taken a klonopin to try and sleep off the pain. Then I took tylenol for the inflammation. Don’t want to Heath Ledger it. 

I finally have been given an answer

I went to Dr. Grubb today. He said the moment he looked at me he knew what I had. I have Joint Hypermobility syndrome aka Ehlers-Danlos. Pretty much the best day of my life in a decade. He is the best doctor in the world.

OMG

I finally got in to see Doctor Grubb! October 11th! I’ve been waiting for almost 2 years for this.

Great

Now I have to type withe my left and on my i0od because my right hand is numb and weak from whatever is going on with me neurologically

Fuck this

I’m getting a goddamn second opinion on my chiari malformation because no normal, asymptomatic person HEARS and FEELS clicking/squishy sounds coming from the bottom of their skull. I’ve been having these clicking attacks for days, I’m nauseous, my swallowing is impaired, I have a skull crushing headache, and I’m having near fainting events everyday. I completely loss consciousness today and my heart rate has been above 88 bpm the entire day.