Welcome to my blog! 

Just doing my best over here to chronicle my chronic condition with alliteration, humor, and a whole lot of spoons!

Everyday I'm stumblin'

Everyday I'm stumblin'

Simple photo of a white chair with balloon attached. Text reads: don't take the air outta my balloon.

Simple photo of a white chair with balloon attached. Text reads: don't take the air outta my balloon.

Don’t take the air outta my balloon

Here’s looking at you, Dysautonomia.

the best way to physically visualize this:

When my heart rate crashes, erry damn day, my head is a balloon and the air lets out. Most of the time at least I’m sitting, wheelchair/rollator seat/couch/bed, because I feel faint a whole bunch. (Anytime I sit from standing, the rate usually goes to around 110 BPM—give or take—and goes down to 70 or 80’s within a minute or less.)

I’m gonna link here if you want to know more about (another!) thing that I stemmed (get it? brain-stemmed) from my neurological dis-eases. Dysautonomia International is a great resource. The following answers the question: what is dysautonomia, taken from dysautonomiainternational.org.

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. 

I don’t know how exactly it works, because I've not yet been fully trained as a Neuroscientist (jk, jk), but I do know that the communication with a few <sarcasm> of my organ systems (heart, bladder, GI, circulatory, temperature control) and my brain are not working. My heart pumps like crazy when my brain thinks I’m exercising ie: standing or walking, then slows very quickly, causing the blood & blood pressure to rush around my body. Unfortunately, and I mean really, it makes movement/exercise impossible. AND because of what is called “de-conditioning”, when your body isn’t able to do said exercise, it can make things worse. Yay!

Movement is really important, kids.

Let me paint a(nother) picture

I rode in the car the other week and we went on a clover leaf on-ramp. I felt like I was a jar of Kool Aid and all my juice (blood) rushed to one side of my body. I seriously had no idea what to do.

“Is this what my blood feels like in a centrifuge!? omgomgomg…”, I thought.

It was really, really, not cool. I guess it felt like a teacup ride at Disneyworld on hyperdrive. Or the centrifuge thing—whatever simile you prefer.

After getting it together as much as possible, I realized I had been on this highway as a passenger before. I had felt—mostly—this way before, years before I knew about these rare brain diseases...but I could rally back then, so there’s that.

Memories, all alone in the moonlight

It was a rainy day about four years ago, and I was in the backseat of my friends' car. I was a little cramped because I sat next to their kiddo in his carseat (who we were on our way to drop off because—party and alcohol were forthcoming).

Long story short, it was the same on-ramp, the same infamous highway. Same Kool-Aid feeling.

I tried to keep my insides—inside of me—while at the same time desperately trying to avoid the baby in his car seat. I didn’t have many options as the baby was sat betwixt (hell yes I used that correctly, check that off the bucket list) a friend and I in the backseat.

I had no choice but to use my beloved sweater, and after pulling over on the side of the highway in the pouring rain, I left a little bit of me there. It’s ok though, I bought a new sweater on our way out to the pub crawl #Hardcore.

It’s memories like these that make me think “Hmmmmmmm”. Obviously that was years before my hemorrhage (although it’s possible that it has hemorrhaged before, I have just never had a head scan before 9/1/16) and no doubt the CCM (Cavernous Malformation) was chillin’ in my brainstem my whole life.

I guess what I’m trying to say is if you have a neurological condition, or something else that causes you insides to feel like a powdered drink that you mix with water—

avoid clover leafs on the highway.


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Enjoy some recent pictures below! Make sure to subscribe even further below so you never miss a post!

Hydration Nation! An HGTV Hydration Game

Hydration Nation! An HGTV Hydration Game

It's My 2-Year Brain-a-versary

It's My 2-Year Brain-a-versary