Less Flexible

View Original

My Abusive Ex-Lover, Ehlers-Danlos Syndrome

Hello Kids!

I just got back from a long trip last night.

I pulled my scheduled post to tell you about it.

So glad to be back. I was homesick. I missed working. I missed Mr. Pennington.

It started with our 100th wedding anniversary. We celebrated with Sweet Lady Jane cake (the best in Los Angeles!) and champagne at home. Then we froze the rest of the cake, bundled up and got on a Southwest plane headed for Mexico.

We landed at the fabulous W Punta de Mita.

With a room like this, you are paying for the privacy, not the view. Even so, I couldn’t get into it. But I enjoyed the view.

Mr. Pennington and I met the old fashioned way, in person. Online dating hadn’t yet been invented. Can you imagine?

We got married a few weeks later, as it took a while to get around to it. He made my head spin.

But don’t ever marry a stranger, Kids. Unless you are young, broke, willing to admit you are wrong and get a quick divorce in six months and listen to all your friends say I told you so.

As it was off-season, the W Punta de Mita was almost empty, save for a few other couples in serious relationships. How cozy.

I analyzed my stroke technique.

I caught a wave. The good ones always push you under.

I do it all in my Victorian swim costume, which I got from Lands’ End, along with my navy blue swim cover I’m sporting in the pics above. Saves me the hassle of sunscreen.

I brought my TRX and we worked out. And again. We made some videos of exercises to promote shoulder stability. Coming soon.

It would not be a W if there weren’t a co-ed bathroom. This was a problem when I dumped my eggs Benedict down my front and wanted to rinse my clothes in the sink. Darn! I sent them out for laundry. You’ll be happy to know the stain come out.

We got a taxi for Puerto Vallarta. We apologized to the driver for our President. He was understanding, “At first it was confusing, but now everyone knows, el esta loco.”

I thought about getting some good drugs for cheap! But then I remembered, I don’t need them anymore.

So, we went whale watching instead.

We watched mama’s teaching their babies to dive. We watched males fighting over females. It was awesome.

Bye bye whales. Bye bye W Punta de Mita. Bye bye Mexico.

We took our last walk on the beach. We bundled up and got on a Southwest plane for Texas, where it was getting down to 40°. 🥶🥶🥶My wool sweater, cashmere socks and heavy leather jacket also got a vacation in Mexico first.

Austin is fabulous.

Texas is a state with self-pride, whut??? Los Angeles is a city of self-loathing.

What’s this gas price? In liters?

We walked about 6 miles per day. I never never crash and burn anymore. Did you hear that, Kids? I’ll say it again.

I never never crash and burn anymore.

Everyday I get to do whatever I want.

My abusive ex-lover, Ehlers-Danlos Syndrome, does not stop me.

I crossed the finish line of the Austin Marathon, even before it started.

I enrolled Mr. Pennington in the Moody College of Communication because sometimes he is moody and doesn’t communicate.

We visited the Lyndon Baines Johnson Presidential Library. OMG a president not distracted by Twitter, whut??? LBJ got sh*t done! All the way with LBJ!

Jumping for Joy at the the Texas Chili Parlor, where the house Pinot Noir with the white bean chili was excellent.

We have a membership in the North American Reciprocal Museum Association, so we get in practically everywhere for free. I highly recommend it if you love art like we do.

We toured the Blanton Museum of Art, where there was a lot to appreciate and a lot to make fun of. We also saw Ellsworth Kelly’s Austin and The Bullock Texas State History Museum. Both not to be missed.

In Texas, the booze is cheap. We spent Saturday night drinking on Dirty 6th Avenue. With my fabulous EDS treatment regimen of injected Ascor, salt-loading and naltrexone, I do not get hungover. I don’t get out-of-control drunk. Good news if you party like a rock star on vacation and a whiskey neat is $2, making up for all the years you were too sick to get out of bed.

We went to Gourdough’s for a Big. Fat. Doughnut. That is the Porkey, grilled Canadian bacon and jalapeño cream cheese. That sucker was great. Wish I had one right now.

We enjoyed fine dining Rudy’s Texas BBQ. Oh man, that was so good. Better than any BBQ I’ve had in LA. If you look closely you can see my banana pudding in the background.

Then one day, as planned, Mr. Pennington packed up our swim suits, flip flops, sunglasses and passports and flew home without me. I stayed on alone in The Lone Star State. I had some stuff to do. All by meself. I am a real grown up now. 

My New Normal

On this trip, I relaxed and fully took for granted my high level of health. I have found it impossible not to be constantly afraid of falling apart, after a lifetime of EDS. But this time, for reals, I enjoyed myself knowing: 

  • That I would sleep easily, enough every night, and wake up every day feeling fully rested. ☑️

  • That I could do anything everyday without a care. ☑️

  • That I could carry my stuff, sit on planes, hotel beds, lounge chairs, boats without triggering a spinal meltdown. ☑️

  • That no part of me would blow up in pain. ☑️

I had minor problems:

  • Too much time in the hot tub caused strong back spasming lying in bed that night. Immersion in heat destabilizes my very floppy body. I had a moment of severe panic, then I fell asleep quickly and woke up fine.

  • I did so much heavy workout on my TRX, the scar tissue in my abdomen flared up. Too many hernia repairs and other problems. Ouch! I thought it would hurt for days. Nope. I iced it and it went away fast. I never even took one Tylenol, the whole trip.

  • Watching movies on my iPad on the plane was stressful on the top of my neck. I don’t usually tilt my head at such a sharp angle, so I am not used to that. It ached, but nothing like my old pain.

If you didn’t know about the stash of pre-loaded syringes of Ascor I had in my cold bag, I passed for entirely normal, actually a very healthy and strong normal. Except for the large amounts of salt I dump on my food. That attracts attention.

Life Without My Abusive Ex-Lover

What happens now that I am not trying to survive unmanageable Ehlers-Danlos torture?

I am sorry to say, even ashamed to admit, I get painfully depressed. Like my brain is on fire. (Sigh). It really hurts.

I don’t get too upset about it. I get on with my plans, even if it is hard to move for the sadness. I know how to survive pain. I am easily distracted and generally enthusiastic about life, so it passes, eventually. The best thing to do is keep it moving.

But it will return. It always does.

I hope it stops happening someday. I am not optimistic about that.

On a trip of so much normal, nothing between the collagen-typicals and me anymore, it was inevitable that it would become a painful mediation on all the life I had missed.

When you are severely affected by Ehlers-Danlos, how much can you care about anything else? Your life is trying to get through one day, get anything done, survive your next EDS disaster, live through your pain. There is no time or attention for anything else. Nothing else matters but the abuse you don’t deserve but cannot escape.

And now that my life with my abusive ex-lover is over, I am left with so much grief and anger it chokes me. I wonder if I will ever sort it out? 

In Austin, I stocked up on half-price Godiva Valentine’s Day candy. Yay!

I bought Mr. Pennington a brand with a Z on it, so he could mark steaks and potatoes, like a real man. The TSA opened that suitcase, we think because of it. You’ll be happy to know they did not steal it or my chocolates.

Mr. Pennington checked me into my Southwest flight from his desk at work in Los Angeles. He likes to take care of me. Hey, I guess marrying a stranger did work out. Look at the great queue spot he got me! I can sit on the pilot’s lap.

Home.