What’s it all for?

On New Year’s Eve, Mr. Pennington and I were down by the ocean.

We saw a bird, alone, forlorn, who clearly had a bad case of aviennui. With no one beside him to ring in the new year, he stared sadly into the dark water. What he was thinking, we could imagine:

Last year wasn’t so great. What’s it all for? Eating more fish? Sitting on the sand? Getting chased by kids? It isn’t the fun it used to be. I remember when I was a careless egg in a nest. Those were the days. Maybe I should just end it all by diving into the water. Nah, that won’t work, I am a sea bird. Besides, it’s so freaking cold. I mean, I’d like a refreshing swim, but that water is 54° according to Google. Brrrrrr. 🥶 Who wants to get in that?

What’s it all for?

I don’t know either. But on New Year’s Eve, Mr. Pennington and I sure looked good.

My Spangled Tie

No, you cannot get a spangled tie on how much can I pay for the most unflattering, cheaply made garment that already looks worn out Abbot Kinney. It’s not at Neiman Marcus either.

I got that sparkly tie (it’s a necklace actually) in fabulous Palm Springs, to which I Tesloop’d (that’s a Tesla shuttle service) to and fro in the summer of 2018. I saw that tie and had to have it, knowing it would be either the greatest fashion accessory ever, or a complete miss. I think I paid $15. On New Year’s Eve, the gushing compliments from strangers did not stop.

Palm Springs, June 2018

What Elon Musk was thinking when he deigned the Telsa, I can imagine:

I want it to feel like I am driving on the sun.

The windows of the Tesla are so slanted, it’s like sitting under a giant magnifying glass. The roof is all windows, too. The tinting is merely cosmetic, no charge for the extra radiation. It’s like riding in a microwave oven. I kept my hat on, covered my arms and applied sunblock. The car was so hot, it couldn’t keep up with cooling itself and that battery drained fast. The electronic interface is a giant, temperamental touch screen which takes a lot of visual attention to operate, so best of luck not crashing while trying to change the radio station or map. I wouldn’t let Mr. Pennington even try. He protested, but I wanted to make it home alive. Safety first, kids.

Un-Disabled in 2018

In 2018, I completed the Department of Rehabilitation’s program. Your tax dollars at work, putting disabled folks back into the workforce. Every state has one.

How do you get a job when you have years of blank resume because you were so sick? You can’t. That’s what the DoR helps you get past, and helps you get accommodations for your disability.

The DoR was a great stop on my journey, and I will be writing all about it soon. They did so much for me, I couldn’t believe it. Sometimes you end up in the right place at the right time.

In 2018, I went to work for a billion dollar corporation, in a building full of people to say hello to, day-in and day-out, with not one person there knowing I have this stupid disease or had spent most of my life disabled. That was the best. What relief, to be something else. The stress of chronic illness and disability is worse than anything.

With all these C shots, exercise, physical therapy, perfecting my posture and how I use my joints, I quickly adjusted to the demands of the job. I never asked for any accommodations. I kept up with the normals. In some ways, I did even better because I am so fit and use my joints so well. Almost everyone has back pain from all the slouching, pelvis tucking and head slumping we do in our society. But not me.

Working, I was entirely blown away by how much normal people grouse. I mean, if you can get out of bed and do something every day, what can’t you fix? Not much. But what an emotional payoff there is in complaining to anyone who will listen, and to no one who has the power do anything about your problem. It takes no courage either, yet it is a very self-satisfying position.

Look how wrongly I am being treated! Look how awful they are to me! Where’s that raise the promised me? Boo-hoo! Hey, now I can read my Facebook and watch YouTube all day because how unfair this company is to me. Win-win!

If only normal people knew what it was like to be one of us. To be someone so sick you have no choices, to be in so much pain a normal person could not imagine, to be barely managing to survive, to be living a life with no relief and no hope of improvement. I know what a real problem is, and you probably do too.

Feeling Better in 2018

In 2018, my crippling PTSD ceased, along with my painful post-opiate depression. No coincidence that both lifted at once. Opiates destroy you, leave you depleted to your core and resurrect from the dead your life’s worst emotional horrors to haunt you. No wonder people can’t get off. I will write about treatment that worked for opiate destruction later. Posts I wrote about my PTSD are below.

Hopes and Dreams

Mr. Pennington says I don’t talk about the sick years of my life enough on my blog. But I am only barely able to talk about them at all. Those memories are so disturbing, I have been running from them since I got so much better. I want them never to have happened.

When I was so ill, I lived on hope and dreams. I was entirely focused on my next move, whether it was getting across a room, to my next doctor’s appointment, or the next modality I would try. I blocked out everything else, which wasn’t hard because I was too sick to think.

My life was torture, but simple and isolated. An ultra-marathon I ran day and night, by myself, with Mr. Pennington and Dr. Plance cheering me on. The opiates helped me endure. They make all pain seem okay, physical and emotional. I was going to cross that finish line and get to a better life.

There is so much normal in my life now that the past creeps up on me, jars me and disorients me. I feel like a refugee. I escaped the repressive totalitarian regime of Ehlers-Danlos, a land largely unknown, so no one understands.

If I think about how much of my life I spent hardly about able to get out of bed, how much pain I was in, how much life I missed, I have a hard time getting out of bed, which is ironic. But I do force myself up. Always. If I am not dashing off to work early, I do some push-ups and TRX first thing out of bed, to stay strong and activate stabilizing muscles, and because it helps my mood so much. Rushing out the door and getting dropped off at the Metro by Mr. Pennington because I have a job is wonderful for my mood, too. What a gift to be out and about.

I am still afraid of normal life, even though I have been showing up and making it through for years now. Can I really do this? Maybe I was sick too long. Maybe I always will be pessimistic. That EDS fatigue is so scary. Wouldn’t any of us rather be blind? Be in a wheelchair? Be paralyzed, rather than be that sick? I lurk on EDS support groups, and read agonized posts about the life of torture of EDS. I feel humbled and confused. I let the grief wash over me. Free therapy.

TRX Functional Training

In 2018, I did the TRX Functional Fitness Trainer Class and had a great time. (If you’ve read my blog, you know I got a trainer certificate to take care of myself better.)

This class was a full day of hard core, demanding exercising for flimsy me. I kept up and it was awesome! Yay! But I could hardly walk for two weeks after, for the pain in my lower leg. Ouch! I was terrified I had dislocated my knee. No, Dr. Plance said, just soft tissue strain. Time for more physical therapy!

There’s Nothing Like an Excellent Physical Therapist

You must find a good one, one to whom you can bring your problems and improve your functioning, make you stronger and more stable and show you how to use your body better. Our muscle imbalances and poor joint usage causes us pain, which surgeons usually don’t know. We get talked into many ineffective and damaging joint surgeries.

This morning with my PT, we worked on deep cervical extensor muscles and muscles around my shoulder blades to properly support my long elegant neck. How fantastic! That joint at the neck and head is one of the loosest in the human body, and is absolute agony for us.

Then I saw Dr. Plance, who gave me a hug, said, with a big grin:

I cannot believe you are working. Unlike everyone else, you take the sh*t life gives you and you don’t lay down and give up.

Aw, that was nice. What a great day today was. Did I mention the White House Black Market blazer I wanted finally went on sale and I got it? Yay! Their garments fit my narrow shoulders. I’ll be wearing it to work tomorrow.

Here I am in physical therapy with a laser strapped to my forehead, working on balance and learning to navigate the environment without crashing into it. Although I prefer to think the furniture, walls and doorways are crashing into me.

Those are recovery boots inflating and deflating, pushing swelling out of my knee and foot, just like a professional athlete. Great device! I get deep joint itching from those, which is a sign of healing.

I see another physical therapist specifically for my foot. She gave me foot and ankle exercises no one had before. My horrible foot injury transformed into a very minor annoyance. Yay!

The human foot and ankle have 26 bones, and more than 100 muscles, tendons and ligaments. No wonder foot and ankle surgeries fail on us. How you could stabilize all those tiny joints with surgery? It must be done with our own strength.

Without all this injected C, I cannot get stronger or adjust to activity. Without it, my injuries became lingering and chronic. Without it, I ache forever and am always fatigued.

Item Crossed Off Bucket List

In 2018, I stood in front of A Sunday on La Grande Jatte. It was my dream.

The real one, at the Chicago Institute of Art. I have a list of art I want to see in person.

I also swam the backstroke in Lake Michigan because I was training for the Dwight Crum Pier-to-Pier open water race, which I completed in August of 2018, an accomplishment beyond my hopes for my fragile body.

Here are my posts about my 2018 summer ocean swim racing. Start at bottom. I couldn’t get Squarespace to order them oldest first.

After the summer was over, I had gotten so strong and had so much fun, I decided to keep swimming. It was fun while it was warm. I was often the last one out of the water, happily hauling the buoy back.

I kept swimming into the winter, for the free cryotherapy. It was so much fun it hurt, minus the fun part. I was the last one in and the first one out of the water. Brrrrrr. 🥶 Who wants to get in that?

May your dreams come true in 2019.