Author: El

40 something gamer girl with EDS and a 🌎 of other 💩.

Classic Macaroni & Cheese.

~ El

I use sharp and extra sharp cheddar for regular use and for holidays add various cheeses like sharp and white cheddar, gouda ect. Gouda and havarti type: a little goes a long way! Makes it very rich🧀

  • 2 lbs. of block cheese
  • 1 lb. of elbow or small noodle of choice
  • 1 egg
  • 1.5 cup 2%-whole milk or cream
  • Salt
  • Fresh ground pepper
  • 1 lb. of cooked and cut up bacon

Pre heat oven to 350°.

Boil noodles. As those cook prep the egg mixture; combine egg, milk or cream plus salt and pepper (as desired) and whip together until blended thoroughly.

Cut block cheese into small cubes and set aside.

When noodles are al dente, drain and put in a baking pan or dutch oven then cover with egg mixture and stir until combined well.

Add in blocks of cheese and bacon until the mixture is well distributed equally as possible.

Bake for 35 minutes or so, depending on your oven, the top will be bubbly and golden.

Lesser known facts about EDS.

~ El
🦓Ehlers Danlos Syndrome as a whole is a SERIES of genetic connective tissue disorders that also comes with sometimes dozens upon dozens of diseases and conditions called comorbidities.

Most health professionals INCLUDING DOCTORS don’t even know what EDS is, and if by chance they do– it is rare they will understand the full gamut of complexities. Patients wait years or even decades for diagnosis after generally being told their symptoms are psychologically manifested.

🦓Not only is our collagen depleting more with each breath, but the bit of connective tissue we do have is faulty.

🦓The villi of your small intestine, which is where you absorb your nutrients, are made of collagen. This leads to malnutrition and absorption issues that can require a feeding tube and even hospitalization. Antibiotic use can make this worse.

🦓The eye is comprised of 80% collagen and the rest all soft connective tissues. Random blindness occurs, sometimes sight is not regained or very little is gained back.

🦓The autoimmune diseases we can have are sometimes caused, at least in part, by many unnecessary antibiotic treatments due to many having Mast Cell Activation Syndrome from early childhood leading to many illnesses.

🦓Not only are we clumsy and a fall risk due to unstable joints and poor peripheral vision we can also have seizures or faint, especially if we have the comorbid condition called Postural orthostatic tachycardia syndrome (POTS). Bye bye, driver’s license.

🦓Ehlers Danlos Syndrome is one of the top 3-4 pain problems known to humankind. The intractable pain of EDS is more painful than cancer.

🦓Patients with the severest forms experience connective tissue that begins to fail in its ability and duty to stay attached to and uphold organs including tendons, ligaments, cartilage, spinal cord, brain, eye, teeth, and peripheral nerves. As the connective tissue deteriorates, painful micro-tears affect the organs and cause severe pain, essentially head-to-toe. Consequently, unremitting pain sets in, causing disability to such an extent that patients become bedridden or couch-bound.

🦓EDS-HT (hypermobility type) is now considered the commonest EDS variant with an unexpectedly high disability potential.

🦓Ehlers Danlos Syndrome effects each patient differently.

EDS is degenerative and there is no cure.


Citations: -experience: self, 41yrs EDS

Hello…err… world.

~ El ~ Leave a comment

How to begin?

Be yourself; Everyone else is already taken.

— Oscar Wilde.

So the 49ers vs. Seahawks game is on and I sit with my guy and try to figure out… WordPress on my phone. Pfft. I used to design my own custom css based themes for my wordpress blog back in the day. The days of sh0tgun.net hah hah.

I used to do a lot of family blogging (and self taught web design and development) back in the early to mid 2ks. Life then and now however is like night is to day. There’s shitty aspects to it these days, super shitty but I’ve also never been happier or in a more secure place in my life either so there is a balance.

I reckon I’ll need to start the next post with an introduction of the main reason I decided to blog again: Ehlers Danlos Syndrome 🦓