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?"
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.
Why can’t I just administer my own god damn saline?!
that drinking a frappuccino sent me to the hospital one time.
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.
Who needs a clock in the shower when you can guesstimate how long you’ve been in the shower based on the horrifying shades of red your legs turn.
"You’re tired? How about you just drink some coffee or energy drinks?"
ARE YOU FUCKING TRYING TO SEND ME TO THE HOSPITAL?!
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 my heart rate went up to 103 and I got clammy just from putting on pants.
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.
Going all the way to Ohio just to see this doctor on Friday. It better not be a fucking let down. Though I’ve heard great things about him.
I finally got in to see Doctor Grubb! October 11th! I’ve been waiting for almost 2 years for this.
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
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.
Seriously. The polydipsia is gotten so crazy that I can’t sleep due to constantly peeing then having to drink more water.