Washington Wedding

We had come to Seattle for a Washington wedding.

Reception Decor (64).jpg — What is better in life than love?

Getting ready with Mr. Pennington

is always half the fun. He gets a proper shave. He is a gentleman.

Time to get dressed

Here’s how it get on your granny hose, kids. No struggle, no sweating, no hand strain. Effortlessly slide them on OVER an inexpensive pair of regular pantyhose. Use your donning gloves of course, but you already know that.

Compression stockings make me feel so good. I love blood pressure! And a toe spacer to keep my long marfan toes in order. I am trying to make my feet last not forever, just until I die. I have super knock-knees and super high foot arches, not the most common Ehlers-Deformities, but definitely we are out there. I will write more about how I manage to walk miles and climb all the stairs I want without pain another time, but I will bet you can guess… it comes down to posture and exercise.

At age 13, my feet were the first part of my body to blow up in pain, followed shortly by my knees and low back. I was so exhausted, and busy trying not to faint, it didn’t matter that I could barely walk or carry my backpack. Nobody cared back then, which is why it meant so much to me later that Dr. Plance did.

Since my parents were always busy trying to destroy each other, it didn’t matter that they had sick children. We were the captive audience for their grand drama, forced to take sides at every turn, punished by one for choosing the other, while they slept in the same bed every night. No trouble in paradise.

When my body fell apart as I began to grow, It took months and months to get them to take me to the doctor. Even though I hated doctors, the pain was so disturbing, I begged. The sense of my overall fragility, I could not describe. The world became to0 heavy for me. I lived in constant fear of being hurt by everyone and everything. EDS is very traumatizing.

My parents lacked the empathy and social skills to involve themselves in my medical care. Nothing mattered unless it was about them feeding off each other. When those orthopedists at UCLA offered to saw my crooked legs in half and bolt them together straight to fix my knee pain (oh for sure!), the choice was 100% mine. I passed because it scared me more than my never-ending knee agony. I took naproxen, which was a prescription back then, like candy. My parents never acknowledged my profound fatigue, my inability to function. Everyday of my life was torture. I developed resourcefulness and self-regulation skills from managing my undiagnosed disability on my own. The day I never saw them again was a great day of my life. Truly, nothing in life is better than love.