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?"

 

How my day will probably go

Fall asleep at 4 am.
Wake up at 1:38 pm, mid heart palpitation.
Crawl to my medication.
Lay on the floor for 15 minutes.
Wait for medication to take effect.
Get up too fast and fall on the floor.
Stumble down the stairs.
Eat a banana.
Take more medication.
Go back up to my room.
Start drooling from sedation.
Try and use laptop.
Shut it and fall asleep.
Wake up at 9:34 pm.
Try and engage with mom but get in argument.
Take more medication.
Go back up to my room.
Put on repeat until August 25th.

MY SHOWER SEAT IS COMING!

My blood pressure has been shit for weeks now and I makes taking showers super hard. There’s a built in tile ledge in my shower but I really don’t want to sit on it because of mildew and grossness. My new chair is anti-microbial and can be cleaned easily. Taking showers as of late have me nervous because I got lightheaded and bumped really hard into the glass doors. I could’ve of broken through them and got stabbed by glass. Dr. Meltzer banned me from taking baths again so I really need this chair. I never knew I could get so excited for a little shower seat.

The neurologist today…

He diagnosed me with basilar migraines. He’s putting me on neurotin and I’m fucking scared that’s it’s going to give me bad side effects. Plus I have to take it three times a day which is a pain in the ass along with all the other medications I have to take. Hope the neurontin doesn’t fuck with my blood pressure or make my dysautonomia worse.

My body: Hey, how about I give you a series of random heart palpitations when you're chilling in bed and see how fast you can get to your medication!

Me: PLS NO

My body: GO!

Need some help and info

So I was wondering if anybody here with dysautonomia and Ehlers-Danlos syndrome suffer from hemiplegic migraines. I’ve been having these horrible episodes that I first thought were panic attacks until I start to go numb on one side of my body from my mouth down to my hand. My legs were not effected. I lost the ability to speak properly. I was trying to tell my mom that I felt numb but the word coming out was “newm” and it was really hard to get out. The only way that I could tell my mom that I was feeling numbness was by spelling out the word “numb.” Again it was really hard to say each individual letter. My mom called 911 because it was definitely not a panic attack. My whole right arm was numb and tingly, half my tongue, the roof of my mouth, and my throat was also numb. It also felt like I couldn’t breathe even though I knew I was. When they took me outside, the light hurt my eyes so bad that tears started to come out of them. It felt like somebody was repeatedly using a camera flash on my eyes. I also had a really bad headache before the attack. They discharged me with a paper that said, “how to deal with panic attacks.” I felt so mad. I’ve had panic attacks before and never have I gotten bilateral numbness. Panic attack “numbness” is more of a disassociation, I was actually feeling pins and needle sensations and lost my ability to speak. This was not a panic attack. I was wondering if the dysautonomia and Ehlers-Danlos could cause hemiplegic migraines. I think I have these migraines but it’s very hard finding info and convincing my doctors to look into it. I have an appointment with my neurologist on June 22nd and I could use the help trying to convince him that there’s the possibility that I have hemiplegic migraines instead of him blaming on my panic disorder. You can inbox me or reply. I need the help ASAP! Thank you.

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.