Hooray!!!!! SNOW DAY!
 
I'm so excited to have a winter wonderland view outside my window today. FINALLY after all the threats (promises) from meteorologists, we have measurable snow. Okay, Northerners, it's only three inches, but it's pretty!
 
Of course, snow means frigid temps and frigid temps mean I am housebound until things warm up. My joints were not made for weather under 50 degrees. But I just got a new chair (it's pink), and it sits by the window, and today's view is lovely to look at. I always say, if it has to be this darned cold, it should at least look pretty.
 
Okay, enough silliness. Today's email is really just a series of random thoughts. Are you ready? Here we go.
 
Random thought #1
 
When we were discussing the Alex Pretti case, my friend Chris said something that really stuck in my mind. Selco and Toby, whose advice I believe in, always say about trouble that the number one rule of survival is, "Don't be there." And if you are there, "Leave, and don't be there." It's simplistic but great advice. 
 
Regarding the Pretti case, Chris said, "Best “Don’t be there” proof I’ve ever seen."
 
Isn't it just? This is not to blame the person who was shot or to take sides either way. It's just a reminder that we are responsible for our own safety. Putting ourselves into dangerous situations where tempers are flaring is a high-risk scenario, and the best way to be safe from this is, well, don't be there. 
 
Random thought #2
 
When my girls were younger, we attended several large protests against Monsanto and their chemicals and GMOs. I told them that protesting was our right as free people. And that is still true. But it was a different world back then. Now, even if I were able-bodied, I cannot imagine that I'd ever attend one of today's protests, and I would certainly never take a child. 
 
Random thought #3 
 
My physical therapist makes me think that a PT in your survival group is a fantastic idea. They can do so much for pain that doesn't require anything modern, nor any medication and that would be incredibly valuable. 
 
Random thought #4 
 
I had an unpleasant but relatively painless medical test this past week called a gastric emptying test. After fasting, the patient eats a "meal" of scrambled eggs with a radioactive tracer and dry toast with jelly. No salt, no pepper, no butter. It's really quite awful and reminded me of why I stockpile culinary spices. You get 4 ounces of water to wash it all down. I can tell you quite honestly that the water was by far the best part of that meal. 
 
Then they do a quick scan to make sure you got the tracer.  Then, for the next 4 hours you got one scan per hour to see how quickly the tracer (and meal) made it through your stomach and out into your intestines. 
 
Here's the issue: Unfortunately for me, I was too tall for the machine to read stuff that was higher up in my system. (I'm 5'7' - not Amazonian!). I had to "squat" and hang on to the handles for each scan. Each scan takes one full minute. I don't usually wave the "I'm disabled" flag but I pointed out, "Hey, I'm disabled, see my mobility device?" That was met with a shrug, and I certainly didn't want to eat that awful meal again. So, I squatted. My poor joints were screaming after doing that five times over the course of the test, but I survived. Though, it should be noted, I spent the following two days in bed with multiple heating pads and pillows supporting various joints  
 
Random Thought #5 (This is so much easier than finding segues between subjects!) 
 
It turns out that after 4 hours, I still had more than 60% of the meal in my stomach. At that point, you should have no more than 10%. So, I have delayed gastric emptying, also known as gastroparesis. This is a very common comorbidity with Ehlers-Danlos, which is why I was having the test. Connective tissues are everywhere in your body, including throughout your digestive system. Ehlers-Danlos is far more than just having really bendy joints, and most of it isn't great. 
 
I'll have a specialist appointment soon to discuss my options, but it will most likely be surgical, as I naturally gravitated toward a gastroparesis-friendly diet because it's been going on for years, and I figured out what made me sick and what did not. Luckily, this repair should be able to be done at the same time as my hiatal hernia repair, so the downtime will be concurrent. That second repair has been postponed until I meet with my doctor and we develop a strategy. 
 
Not so random 
 
Please know that I am in great spirits. These issues I'm having now have been apparent for several years (and some of them my entire life). Now I can put a name to them. This is fantastic because it means I can research how to cope with it all, knowing exactly what I'm looking for. 
 
Life is good over here in my little pink recliner. I have a cat on my lap, great wifi, and I get to hang out with my daughter. I get lots of writing time, so expect some new stories soon!  
 
The important thing to remember is that we all have our difficulties in life. I am reminded that if my life were to be cut short by various health issues (this is unlikely, don't worry), I wouldn't want my last years to be unproductive and sullen. I want them to be filled with love, funny little animal videos, good books to read, and good books to write. 
 
You can find happiness in nearly every situation if you can remember to live in the moment. As soon as you begin catastrophizing and feeling sorry for yourself, you go down into a deep, dark rabbit hole. Admittedly, when my first ankle surgery failed, I went there. But with the help of the people who love me, and an amazing mental health therapist, I got better.  
 
This isn't to say that I don't have bad days - anyone with a chronic illness does. But I try to bookend those with days where I enjoy myself. 
 
Like today, with my beautiful wintry view outside my window. 
 
Stay safe. 
Be happy. 
 
Love, 
Daisy 
 
 
 

Unsubscribe



Luther inc.
1740 Dell Range Blvd.
Suite H13-49354 Cheyenne, WY