August Is Gastroparesis Awareness Month

Happy Gastroparesis Awareness Month, everyone!

(Link restored as of 4/2/17) 🙂

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October Is Dysautonomia Awareness Month!

What is Dysautonomia?

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, temperature regulation, etc.

The Autonomic Nervous System
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Ribbon for Dysautonomia Awareness at Duke Raleigh Infusion Center
Stronger Than Dysautonomia
Stronger Than Dysautonomia!

Souvenir, Anyone?

Ever wondered what a J-tube looks like?  Well, wonder no longer!  This baby gives me all my nutrition and medications.  It bypasses my paralyzed stomach and goes straight into my jejunum.  But…do you see the problem with this picture?Screenshot 2015-09-25 at 4.03.56 PM
I’ll give you a hint:  in order to get the nutrition, the tube must reside INSIDE your intestine.  This little tubie got ripped out when I passed out and fell down the stairs (#DropItLikeItsPots).  It’s just been that kind of week.  Oh yeah, and by the time anyone decided to do anything about it, the stoma was completely closed and the balloon left inside was infected so turned into a full-out surgery that REALLY knocked my down about ten steps. Ugh…

Out Of Surgery!

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Officially a tubie!  Started feeds a couple hours ago.  Hard to describe what I’m feeling right now…this is certainly a transition.  Surgery itself went well, but we have run into quite a few complications post-op.  Will try to update later when I am not so sick.

Headed To The E.R.

So…slight issue. Let’s see if you can figure out what I mean:

Pupils

For anyone otherwise unsure, I’ll tell you: this is NOT normal.

My left pupil is small and reactive, but my right is immensely dilated and completely unresponsive. My pupils will often do this, “let’s get all huge and ignore the laws of science” thing, whether it be from a bad migraine or a malfunctioning autonomic nervous system…but never one without the other. This is new.

Other less visible symptoms include a 10+ migraine, vertigo, nausea, ringing in my ears, blurry vision and significant issues with depth perception (the last two come as no big surprise, ha ha).

This crazy eye trick could be due to a number of different things from super scary to laughable…will let you know as soon as I do!

Off to my home away from home,

Cassidy

PS- Oh, and Happy Valentines Day ❤

109lbs

This flare has been unrelenting & it’s starting to show a bit.  Down another 2 lbs. My gastroparesis has been awful & I’ve been praying to the porcelain gods a lot more than usual lately…and throwing up some blood. I should probably get that checked out, but it’s bright red as opposed to the coffee grounds they generally tell you to look out for. I don’t know. I honestly wouldn’t be surprised if the blood is actually coming from my throat. All this vomiting & retching has my poor throat in really rough shape. 😦 It always hurts & I am constantly losing my voice— IMG_0471but I digress.

Despite all this, I’m doing my absolute best to get in enough calories. I try so, so very hard.  I consume 3 Ensure ‘meal replacement’ drinks a day in addition to my usual diet (plus extra snacking), but I just can’t seem to gain weight. I’ve been really thin ever since I got sick when I was 17…that’s nothing new…but I was doing well with holding my weight between 112-116 for a few months. Oy vey.

The student health center thinks I’m anorexic which is definitely not the case. It’s hard to convince them otherwise when my blood work has so off (& urinalysis showing a pretty decent amount ketones)…but Brittany offered to show them the video of me eating an entire gluten free pizza in less than an hour.. 😉 #ChubbyChasing