Health Journey

 

 

Happy Holidays!! This has been a very challenging 2 years. A triple whammy of rare disease diagnosis turned my world upside down. For those of you who do not know, I have a funky tummy that has led togastroparesis, SMAS and NCS. I underwent many tests in PA and FL to be diagnosed by specialists and numerous doctors. I was also recently diagnosed with Hyper Joint Mobility, which has been discovered to have contributed to the gastroparesis, and I'm waiting for confirmation for Ehlers Danlos Syndrome with genetic testing. Unfortunately, the appointment is next November... Despite all this, I am very fortunate for the life I have and what I am able to achieve.

Crochet, crochet classes, and travelling have been my lifeline throughout this horrible journey. While these diagnosis have no immediate cure, lifestyle modifications, eating schedules, high calorie protein powders, creative food preparation, and hope have helped me manage symptoms.

I would like to raise some awareness about these rare diseases so thank you for learning about it!

1) GASTROPARESIS:

A condition that affects the stomach muscles and prevents proper stomach emptying into the small intestines. In short, my stomach doesn't like to pump food out. It digests very, very slowly and I can't eat past 5.30 pm, If I eat later in the evening, I wake up with a terrible belly ache. Some people have to have a feeding tube, but luckily we aren't there yet.

2) SMAS

Superior mesenteric artery syndrome is a rare, life threatening condition which occurs when the abdominal aorta and the superior mesenteric artery compress the distal part of the duodenum. Basically,  this is so NOT fun! I have to put on weight to try and build some visceral fat around the artery to create some cushion to alleviate the vascular compression. 

3) NUTCRACKER SYNDROME

NCS is a rare vein compression disorder that occurs when arteries, most often the abdomen's aorta and superior mesenteric artery, squeeze the left renal (kidney) vein. Luckily for me, the doctors say I don't have to worry about this yes yet as I don't have symptoms that I need to worry about. It is the gastroparesis and SMAS that is my biggest challenges!