My Headaches Returned. F*ck!

It is that time again. Time for my favorite event. The Pier-to-Pier-to-Pancake. We’ll get to my chronic headaches in a moment.

The Dwight Crum Pier-to-Pier is a two mile open water swim race that goes from the Hermosa Beach Pier to the Manhattan Beach Pier. For me, the finish line is brunch.

I love this race because many years ago, I wanted to drown myself when my Ehlers-Danlos Syndrome was so unendurable.I would have done it here, at this beautiful beach. Back then I couldn’t get in the ocean because my body was so fragile. The strong waves pushing against it would give me 10 days indescribable pain.

I did not know I could get so much better.

But I did.

And the story is on this blog.

Now this swim — this race — is a celebration my life.

I swim this race every year despite whatever stunts my malfunctioning body pulls. Not as an act of will power or positive thinking, but as a result of excellent medical care, the foundation of which is injecting Vitamin C everyday, which I have been doing for almost 11 years.

With access to this daily abundance of bioavailable ascorbic acid, I produce better collagen. The C has also made me sleep better and heal better.

When I partake of other medical modalities (such as physical therapy), I benefit more because my collagen is better. Before the C shots, I never got anywhere in physical therapy. I could not break out of the pain-fatigue-inability-to-heal-loop.

Because I have a rare genetic disorder — an inborn illness — medical care is my wheelchair ramp.

2023 has not been a great year for me.

I got injured.

The injury gave me a migraine that lasted 10 f*cking days.

Guess what happened next.

Alright, I’ll tell you.

The injury flipped the switch on my head/neck pain, which had been turned off. I hadn’t begged for anyone to chop of my head for many years.

F*ck! F*ck! F*ck!

That joint of the skull and spine connection is the loosest joint in the human body — a big problem if your body makes weak collagen. The human skull is a heavy bowling ball. It would take tremendous muscle strength to support your head if you could not rely on your tendons and ligaments to provide stability.

And even for the normates, once spine pain gets going, it can take on a life force of its own.

Sigh.

I have been having headaches that make it impossible for me to function.

I cannot find a link between my headaches and a real life trigger. What is causing them? Dunno. What sets them off? Nothing? Everything? It seems to be pain signaling gone wrong.

Oh well.

A normate would be at home on disability. But isolation is dangerous for a pain disease. Depression can make pain worse. I don’t want to be home bored and feeling useless. I have too much energy for that. So I ignore my headaches and carry on, accepting that these unfair circumstances are part of my genetic destiny. I can only do what I can. At least I am well enough to continue to live my life despite debilitating pain, and that is something to be grateful for.

The day before the Pier-to-Pier is always fun. 

Mr. Pennington and I had a boozy brunch after I picked up my swim cap and ankle timer. I love love love this moment! It’s always a beautiful day, and everyone is in a festive mood.

I practiced swimming to the finish line from El Porto in the north. The racecourse is south of the Manhattan Beach Pier so I’m not swimming the right away, but who cares? I’m a little buzzed, and I’m almost there!!

I awoke early the next morning.

Ah, race day! Happiness! Joy!

I felt strong, ready for an epic swim.

And then a headache came on.

A bad one.

F*ck! F*ck! F*ck!

We pulled into Hermosa Beach — me and my pitt crew, chauffeur, photographer, cheer leader — Mr. Pennington.

I brought my green glasses because green light allegedly reduces pain. Do I look cool? Cuz I’m not in less pain. F*ck placebos!

I wanted to cry for the injustice of having a f*cking headache on this of all days and for how much the headache f*cking hurt.

But I choked back my tears.

I considered going home, but going home wouldn’t make the headache go away anyway. They don’t go away.

I had to swallow my f*cking feelings. I can’t take the dehydration of a good cry, not ever, but especially not before a two-mile swim on a hot day in salt water.

All tears would do is fill my goggles with salt water. Then you have to stop to empty them. No time for that in a race.

I hustled toward the starting line.

I channeled Michael Phelps, another great hypermobile swimmer, and jumped for joy.

If only pretending.

I decided I would get out and end my race if the swim made my headache worse. Which is the funny thing about my headaches. Activity may not make them worse. But inactivity and deconditioning will, over time, make me much worse. No thanks.

Women’s heat, start!

This year’s race was a crowded field:

1400 swimmers for the great whites of Manhattan Beach to choose from. Why would they pick me?

Just kidding. The great whites aren’t interested in eating us. I’m more afraid of the Lochness monster than a great white. But wait, isn’t the Lochness monster a freshwater fish? Maybe my fears are unfounded.

As for my competitors?

Like a lot of post-pandemic society, we’ve lost regard for others.

Some bitch next to me kept stopping to do a breaststroke kick. Bitch, that’s dangerous. You could break somebody’s rib.

Another bitch on the other side of me had on zoomers. WTF? No swim fins allowed in a race.

And then … the Dwight Crum Pier-to-Pier allowed personal paddle boarders. Um, WTF? They got in the way and blocked me. Who gets a pacer/coach/BFF in a race? Is this a race or not?

Sigh.

The cold water felt nice on my neck. Oddly, the pressure of the swim cap did, too.

North we all went.

Visibility was low in the sea and the sky. I could not site the shore to keep myself swimming in a straight line, which makes the race not longer than 2 miles.

I had to site the pier, which is wasteful extra effort and slows you down a bit. You have to sneak a look up, like I’m doing here.

Loyal readers, you know I hate to site the Manhattan Beach Pier. The pier never never never gets closer until the moment you are on top of it. So discouraging!

Swimming this long a race is an act of faith.

One stoke at a time, I hope I get there. Same with ending my f*cking headaches. One day with enough treatment, they will stop.

I was swimming so hard, I got hot in my wetsuit.

Finally, finally, finally, about an hour and fifteen minutes of intense exercise with no rest and limited oxygen intake in, there it was looming large in front of me.

Ah, darling! There you are!

And every year when this happens, I have to fight back tears.

I want to cry out of happiness and gratitude.

I feel so sad that I won’t get this moment again until next year.

I never thought I would be this strong. An athlete? Me? My flimsy body that used to hurt so much I took morphine everyday?

The swells were picking me up and putting me down, so I was expecting a rough entry into Manhattan Beach, where the waves can be downright obnoxious. Often, they tumble you and hold you down.

But my swim in was peaceful. There must have been a lull. I caught a little wave. Aww, thanks, ocean!

Here I am touching earth again for the first time in two miles.

I am horrified by this picture.

Gurl, that is one saggy shoulder, and where is your wrist going?

Looks like I could still ace the Beighton. So exhausted from my swim and just trying to finish, I have no awareness of what my joints are doing. And no strength left to do better.

I was having calf cramps after an hour and 18 minutes of kicking. I thought I might fall.

But I didn’t.

I ran up the beach like a champion.

Yay for me!

Happiness and joy.

I picked up my t-shirt. You only get one if you finish.

F*ck! Headache still there.

I put my green glasses back on, hoping the allegations of pain relief might prove true.

We headed for the finish line: brunch. I had the Miraval rose. 

Cheers to Brad and Angelina! Or Brad and his Russian Oligarch? Well, whatever! I do love a rose with brunch. This one is excellent.

What a great workout!

My headache got better in the afternoon.

But it came back later and stayed for days. It was unbearable.

I could not find a migraine medication that does not cause osteoporosis. That’s an unacceptable side-effect after I have so successfully built up my bone density. Since bones are mostly collagen, and maybe also due to our nervous system dysfunction, people with EDS get early osteoporosis.

I called the anesthesiologist.

I got more ketamine infusions. Now my headaches go away faster. They are less intense. That’s a lot of be grateful for, even if they are still ruining my life.

Ketamine resets the brain.

It’s anti-inflammatory.

It shuts down the pain feedback misfeed.

Ketamine improves bone density. Yay!

Ketamine is not fun. High dose infusions are pretty scary. More than once I have barfed after. Now I let the doc put Zofran in the mix.

And I love my life, despite Ehlers-Danlos Syndrome.