This was a missive so massive that I broke it into two emails! Part 2 will be en route in just a moment
 
Don't continue reading if guts and innards gross you out!
 
Okay, I'm going to give you the absolute rundown on the condition of my insides right now.
 
As you know, I have finally been diagnosed with hypermobile Ehlers-Danlos syndrome, or hEDS. This is a genetic connective tissue disorder that affects collagen, which is in every single soft tissue in the body. The ramifications can be pretty significant.
 
There are 13 different subtypes of EDS. Some of them are visible and apparent at birth. Some have a high risk of fatal complications. My subtype is not considered one of the deadly ones, but it can certainly wreak havoc on your body and cause disability, chronic illness, and deadly conditions due to the weak tissues.
 
I've had it all my life and had some pretty strange injuries. But for the most part, I was okay and able to do what I wanted to do. However, after all the rigamarole of the past three years, hEDS has decided to make itself impossible to ignore.
 
There is no cure. Those of us with this just have to do damage control as we go along and learn to be more careful with what we put our bodies through. I am highly focused now on bracing, pacing, and injury prevention.
 
I have several unpleasant conditions that all trace back to hEDS, plus a couple of things that are common comorbidities, like a lot of difficulty regulating my body temperature. But this is a letter, not a novel, so we'll focus on the stuff going on that requires surgical intervention.
 
(This will be my third surgery directly related to hEDS.) 
 
Daisy Plays Gastroenterology BINGO
 
Basically, my digestive system, from the very top down to my small intestines, is what the mechanics in the shop I used to work at would call "NFG."
 
No Flippin' Good.
 
Nothing is working as it should, and medications and conservative treatment have been ineffective.
 
Top to bottom, the current cast of characters is: a 
  1. Patulous, fluid-filled thoracic esophagus
    This is my widened esophagus in the chest that is holding retained fluid, also known as the medically respectable name for the thoracic aquarium. It's quite easy for this to splash upward into my trachea, or windpipe, which can happen when I'm sleeping and turn over. This has gotten worse and worse lately. Sometimes I wake up feeling like I'm drowning because, well, I am.
  2. Severe gastroesophageal reflux
    Stomach contents and acid travel back upward into the esophagus, where they absolutely do not belong.
  3. Reflux esophagitis
    This is inflammation and irritation of the lower esophagus from all that reflux.
  4. Large hiatal / paraesophageal hernia
    Part of my stomach has migrated north, up through the diaphragm into the chest, where it has absolutely no business being. It moves around a lot, since it isn't where it belongs, and this is painful. It can cause shortness of breath and sharp pain. I thought I had heart problems for a while, and I was panicking. I had a cardio workup, and it turned out to be this enormous hernia getting twisted up. If it ever became completely twisted or trapped, it could require emergency surgery or become life-threatening.
  5. Enlarged /weakened esophageal hiatus
    The opening in the diaphragm around the esophagus is stretched enough to let the stomach sneak upward.
  6. Cameron lesions
    These are ulcers on the stomach lining where the herniated stomach gets pinched at the diaphragm.
  7. Severe gastroparesis / delayed gastric emptying
    My stomach empties far too slowly, so food and liquid linger there much longer than they should. It causes pain and nausea when I eat something difficult to digest, so I've been existing on cottage cheese, canned peaches, and children's cereal. Food can even linger in there long enough to begin to spoil, which is exactly as gross and awful as it sounds.
  8. Recurrent aspiration risk
    This is not a separate anatomical defect exactly. Rather, it's an important consequence of the whole Upper-GI Circus. Refluxed or retained fluid can reach my throat and airway, especially when I lie down. This is why I keep getting pneumonia. Basically, my cranky organs are trying to drown me in my sleep.
 
Yep, I've won.
 
BINGO! 
 
What's my prize?
 
Oh.
 
It's a great big operation.
 
Psst...
 
Before we get to Part Two, I just wanted to remind you of the fundraiser. I'm doing it 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 so much for being interested in my crazy situation.

The saga continues in Email #2!
 
Love,
Daisy





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