So, here we go with the gory medical nitty-gritty.

 

Hang on to your halo as we take a wild ride through my digestive system and fix all the broken goodies.

 

Apparently I’m not simply having surgery. I’m having a gastrointestinal reconstruction involving a cruroplasty, a gastrojejunostomy, and a jejunojejunostomy, which sounds considerably more dramatic and also possibly requires a wizard.

 

A Quick Message for My Fellow Word Nerds

 

Let's take a moment and think about the glory of the two truly magnificent new vocabulary words we've just learned:

 

Gastrojejunostomy
gas-tro-je-joo-NOS-to-me 

 

and

 

Jejunojejunostomy
je-JOO-no-je-joo-NOS-to-me 

 

I dare you to say that five times fast.

 

Or, honestly, at all.

 

And that's it.

 

Except for a long, long recovery.

 

It'll be about 3-4 months before I can tackle something difficult to digest, like a beautiful, delicious hunk of steak.

 

There are a few things that may seem like a downside. For example, I have to take a daily bariatric vitamin and calcium chew for the rest of my life. The new GI highway gives "that food went right through me" a whole new meaning. I won't be able to eat sugary things without getting sick.

 

weeps for vanilla layer cake 

 

There will be a LOT of adjustments I have to make over the next few months.

 

But I have to believe that it's going to be worth it. How I'm living now is really difficult. I have no energy. I can't go out to eat with friends and family without risking a trip to the hospital. My diet is insanely restricted and honestly, not very healthy at all.

 

And here's the depressing paragraph. The only one.

 

It's become life-threatening.

 

I have been hospitalized for pneumonia four times in the past 8 months. The time before last, they thought I had sepsis from pneumonia. How many times can I spin that roulette wheel and survive? And every single time I get pneumonia, it takes a little more away from my ability to live.

 

I hardly leave the house now because I'm so exhausted from it all. I can't even go grocery shopping or do physical therapy anymore because it will land me in bed for a couple of days, trying not to barf and hoping I just sleep until I feel better.

 

I don't want to sleep the rest of my life away.

 

I want to live it.

 

I want to stop planning my life around "will there be any of my 3-5 safe foods there?" and "Will this cost me 3 days in bed?"

 

So I gladly assume the risks of this surgery. I'm incredibly grateful I got this chance to improve my situation. And if things go wrong, at least I'll know that I did everything I could to get better.

 

I'm no quitter.

 

And, um... if you got this far...

 

I just wanted to remind you of the fundraiser I'm doing to cover website expenses while I'm down, along with the extra expenses of this operation and recovery, which are always more than expected. 

 

Each item starts at just a dollar. 

 

The Epic Printable Prepper Bundle 

For people who like checklists, printables, and having things organized before chaos starts tap-dancing on the roof. 

 

5-Minute Emergency Drills: Practice Makes Prepped 

For people who want preparedness to become something they actually practice, not just something they read about and then forget in a drawer. 20 drills for the whole family! 

 

Home Cheap Home 

For people who want to make home life more comfortable, beautiful, frugal, and functional without spending a fortune. 

 

Quick note: If you are trying to make a purchase and want to use a debit or credit card, put in your price and click "add to cart" to skip over the PayPal and Venmo buttons. 

 

Thank you for reading this massive missive. It may be the longest 2-part email I've ever written. I didn't write this as "poor me." I truly don't want anyone to feel sorry for me - I would hate that. I wrote it because you guys are like family to me, and I think it's really good to spread awareness about hEDS.

 

My surgery is Wednesday. Your prayers, best wishes, healing energy, and good vibes are all very welcome. If you want to think of me that day, wear something pink! :)

 

Love,

Daisy





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