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So Just What The Heck is Wrong With You Anyway?

Welcome friends, family, & those curious about why my tummy hurty/ why I briefly gain access to shrimp colors every time I stand up.

I'll go into more detail on each condition below; but the short(er) version is that, mostly, my blood flow is not ideal, especially to my abdominal organs. When I eat, there isn't enough blood for digestion, and it causes horrible pain-- bad enough to bring on habitual panic attacks, even in someone already accustomed to chronic pain. It also makes me nauseous constantly, and has caused several trips to the ER when I started vomiting & couldn't stop for a week, even to keep down water. Eating anything at all is a challenge, and I have to be diligent to make sure I'm eating enough.

Blood flow to my head is also not ideal. I have to be mindful of my posture at all times, carefully monitor my food (and esp salt) intake, and I MUST have somehwere to lie down or recline at all times. If there is nowhere to recline, I will lie on the floor/ground to avoid fainting. I will do this in public, in a bathroom, or on the forest floor in the dirt in the middle of camp or a hike. The more time I spend upright and vertical, the more exhausted and painful I am feeling. Getting horizontal for 15-20 minutes usually fixes me up quite a bit. The longer I remain upright and on my feet, the higher my chance of blacking out.

Basically, it is uncomfortable and painful to be in my body at all times, even times when I seem relatively functional, but it's particularly difficult when I'm trying to be vertical/on my feet/active. The position my body is in (standing, upright, at a desk, bent over, etc) is one of the biggest factors that contributes to my pain. Merely standing up from a chair can make my heart rate hit 120bpm. Standing for longer than 15 minutes is painful; bending, twisting, reaching across my stomach is painful.

Median Arcuate Ligament Syndrome (MALS)

MALS is a rare vascular disorder that mimics a gastro condition. MALS occurs when the median arcuate ligmaent (a band of tissue located in the chest area) is far too low, pressing on and constricting the major arteries that supply blood to the gastrointestinal system.

My own arteries display stenosis of over 70% on my celiac doppler ultrasounds. I also got told by both technicians that my arteries were very easy to image and they were thrilled about it. They may be squished but they're gorgeous. Be jealous.

Some of my notable symptoms include:

Because MALS is a structural issue it does not get better on it's own and only worsens with time. Many (if not most) MALS patients end up on a feeding tube eventually. The best literature we have (which I will link when I am not sleepy bebby), as well as overhwelming patient testimony, point to surgery being the only long-term corrective solution. This is a major abdominal surgery with a year of recovery time.

I am currently advocating for myself and seeking a 2nd opinion after being told I am not a candidate for surgery at the U of Michigan Ann Arbor unless and until I am already on a feeding tube.

Postural Orthostatic Tachycardia Syndrome (POTS)

POTS is an issue with the autonomic nervous system and circulation; specifically, how the posture of the body changes blood pressure. I really love this description from the Liquid IV website:

POTS causes fainting, fatigue, issues with body temperature regulation, brain fog, and chronic pain among other symptoms, and it worsens my MALS symptoms as well. It's hard for me to stand for any period of time, especially in warm temperatures (if I stay in the shower too long, I pass out). POTS is the reason why I drink so much water- sometimes up to a gallon per day- and why I spend so much time reclining or lying down. When all else fails, lying down on the ground can help prevent fainting spells.

Mental Health Notes

I'm not going to get into an itemized list of everything that is wrong with me, just the conditions I want to draw awareness to. But being neurodivergent surely has also contributed to my diffiuclty keeping a job.

How it Affects Me

Naturally every body and every pathology are different, and interact in different ways. Some people are disabled my MALS much sooner than me, on feeding tubes in their teens, while I seem to have bought myself some time. Yet other people with POTS live much more active lives and are able to work, while some are totally disabled. And I have been told I'm an "atypical case" to boot, though that remains to be seen.

I used to be fairly active as a teenager, but once I started college & working much more, my body deteriorated rather quickly.

testing AGAIN!! RIP.

What if uhh. idk.


Changelog or.


Something goes here.

I dont know what it is yet.

But ill figure it out.


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