My Drinking Problem

Sunday night. Emergency room. Cedars-Sinai Hospital, Los Angeles.

 Sympathy selfie for Facebook. Got me lots of ((Hugs)).

Sympathy selfie for Facebook. Got me lots of ((Hugs)).

I have some strange heart episodes every now and then, but nobody’s worried. I see my cardiologist twice a year, but really it’s just a social visit because we enjoy each other that much.

But this night, something else was happening. It had been a stretch of super dry Los Angeles days. I’d had some terrible stress. I had been sweating a lot and crying even more, and trying desperately to catch up with my hydration, which is nearly impossible. I felt fluttering and flushing with rushes of tingling like I had never experienced. Yikes.

The very last place I want to go is the emergency room at a big hospital. I really thought about showing up at Urgent Care, but I am a Professional Patient, so I know better than that. Urgent Care would not think that was funny. They would probably just call me an ambulance. No thanks.

Why Cedars ER? I could have gone somewhere smaller. But Cedars has the best electronic records system. There, my files are organized. All my current and relevant problems are smack there front and center. My PCP took time to clean that page up, last time I saw her. Everybody can see what everybody else is doing to me. I have to do so little arguing to get understood. Do you know how much work that saves me? When you are chronically ill with a rare disease no one knows anything about, hauling your records around and begging to be understood can take over your life. 

So, Cedars ER it was. The good news is, if you show up to an emergency room with heart complaints, you get to go to the very front of the line. It was one full waiting room that Sunday night. Packed with injured old people in wheelchairs, the walking wounded, and scary psychotics, I couldn’t find a place to sit which was even scarier because I was extremely dizzy. Oh well. I leaned against a wall. If I was going to pass out, I couldn’t be in a better place. It’s important to stay positive.

They didn’t make me wait long.

Lying on a gurney in the hall, the doctor approached me and then I knew

I was going to die

 Me not happy. No pics at Cedars!

Me not happy. No pics at Cedars!

Why? Never in my life had such an attractive man stood in front of me. And with such a comforting presence. Almost angelic. He took my breath away.

If I cannot die swimming alone in the open ocean, I hope it is staring into the face of a beautiful doctor. And there he stood. Not just the best-looking doctor I’d ever seen, but perhaps the best-looking man I’d ever seen. I wanted to ask him to hold my hand. Later I asked Mr. Pennington, “Was I hallucinating or was that guy really that good-looking?”

“He was a very handsome man,” Mr. Pennington said.

Dr. McDreamy reviewed my EKG, my chest x-ray, my lab work, and patiently asked me to explain to him several times what I had done that day (sweated and cried and stressed). 

Then he made his pronouncement, “Ms. Pennington, your blood pressure is high and your sodium is dangerously low.”

“What? My blood pressure is high? Never in my life has my blood pressure been high! That’s what blood pressure feels like? Wow! No wonder I was actually warm! This feels kind of good!” I was tripping.

Dr. McDreamy continued, “You have so much water in you, you aren’t able to pee it out fast enough. That plus your stress made your blood pressure soar.”

I was confused, “But I’m so thirsty! I don’t understand! What? I have too much water in me? Really I am so thirsty! Can I have some water?”

Dr. McDreamy said firmly, “You need salt. If you don’t have enough salt, you cannot hang on to water. More salt, Ms. Pennington. Would you like an Ativan before you go?”

And that’s when I knew I had a drinking problem. I cannot tell the difference between thirst and needing salt. That piece of advice and the Ativan cost $9,000. It was worth it.

 Slightly bombed. Totally exhausted. Leaving Cedars-Sinai ER.

Slightly bombed. Totally exhausted. Leaving Cedars-Sinai ER.

Lucky for me, I had an appointment with my charming endocrinologist at Cedars-Sinai a couple of days later. He could see the ER records right there. “Let's see what we can do to keep you out of the ER,” Dr. G. said. He’s so charming.

 Cedars has the best EHR. Makes my life easier.

Cedars has the best EHR. Makes my life easier.

Turns out, not only do I not crave salt when I need it, I do not hang onto it when I get it. Every sodium blood test we did, I’m at the bottom or off the bottom of the chart. Where is all that salt going?

 Where does the salt go? Mystery!

Where does the salt go? Mystery!

Dr. G really tried to find it, but he couldn’t. It must have run away with all the vitamin C that I eat that I cannot hang onto long enough to benefit from. 

Now, I start my day with a spoonful of salt. I take salt with me everywhere I go. I have a small jar in all my handbags. I have Trader Joe’s $0.99 sea salt jars in the glovebox of my cars. I pour it on my tongue when I am at a stop light, although maybe don’t do that if you have a nice car as it gets everywhere. Salt depletion hurts.

Salt loading has been A-M-A-Z-I-N-G. Now, when phlebotomists take my blood, it comes shooting into the test tube, BAM! Before it was the sad slow dribble of a corpse. I feel so much better salty, too. Blood pressure is so nice. I don’t get dizzy and I swear my energy is better. All from more salt!

It can be hard to chase down a shaker of salt in a restaurant. If you get one, it may have tiny little itty-bitty holes, so hardly any salt comes out anyway.

This contortionist comes prepared.

 Salt shaker from The Container Store.

Salt shaker from The Container Store.

That is MY salt shaker sitting on the table in a Vietnamese restaurant. Never once has it come open in my bag. That is some excellent pork belly.

How can I tell when I need salt? I cannot. I guess.

  • If I am at all dizzy, I pour salt on my tongue. Same for headache.
  • I start the day with a spoonful of salt.
  • When I exercise, more salt.
  • If I cry, more salt.
  • If I drink alcohol, more salt.
  • If it’s very dry out, more salt. I dehydrate less in a humid environment.
  • Super low blood pressure reading, more salt.  
  • Losing weight, more salt.
  • Sometimes I feel hungry but it is just a need for salt. 

How can I tell how much salt I need? I cannot. I guess.

Usually 1/2 teaspoon gives me relief.

When eating, I dump salt on my food until I can taste it. Sometimes I put salt on my tongue and it tastes like nothing. I am guessing – and this is only a guess – that when I become able to taste it, perhaps then I have gotten enough?

I put so much salt on my food, people are truly shocked.

Hunger and satiety for me, like thirst, are difficult to perceive. So I just end up eating when it’s convenient. Sometimes, I eat so much that people are truly shocked. If it hasn’t occurred to me to eat in a long time, I can put away enough for a family of four. Yum!

I used to feel shame because a large percentage of the calories in my diet are from dark chocolate. Then I found out this is typical EDS behavior and even seems to be therapeutic for us. Now I embrace it.

 My current stash. Medical necessity.

My current stash. Medical necessity.

My people do get accused of being eating disordered. And depressed, anxious, malingering, drug-seeking, ADD/ADHD, faking and more. Faulty collagen is crazy.

So there you have it. My drinking problem, a bit about our eating problems and the $9,000 piece of advice that changed my life. Yours now for free, if you have Ehlers-Danlos Syndrome. You’re welcome.

I ran around Paris sweating, never in air conditioner, in horrendous summer heat. I got nearly trampled to death at the Louvre. I waited outside the gates of Versailles for two hours in intense summer heat just to enter, but I never felt dizzy, and I did not get dehydrated, because I always had a container of salt with me. I need lots of fluid too, but without salt, water goes right through me and I only feel thirstier and weaker.

 I survived Versailles!! The tap water in Paris is excellent.

I survived Versailles!! The tap water in Paris is excellent.

My locker at the Koreatown spa, where I will be sitting in saunas and hoping into ice baths and jacuzzis all afternoon, then getting a scrub massage, and later kim chi. 

 Water, salt.

Water, salt.

 My afternoon in Asia. Salt-loading and never feeling faint.

My afternoon in Asia. Salt-loading and never feeling faint.

Clippers game at Staples Center. Feeling a little dizzy. Got my vial of the best white powder.

 Go Clippers!!!

Go Clippers!!!