My Worst Pain Since

This is it. My worst pain episode since.

Daily injections of Vitamin C: 4 years

Off morphine and Vicodin: 2 years

Comic-Con. Lots of silliness. Great art. Great costumes. Always great fun. We go to Comic-Con every year. 

I love   
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  Slater’s  50/50! Have you been?

I love Slater’s 50/50! Have you been?

When there, we always have dinner with dear friends in Little Italy. The food in Little Italy San Diego is the best food in Southern California. Better than anything in Orange County (okay that is easy to beat) and better than anything in Los Angeles.

My beautiful friend Adrienne.

My beautiful friend Adrienne.

After dinner in Little Italy, we went to our dear friends' home and drank Scotch and talked until the wee hours of the morning. Fun!

Sitting in their living room on a cushiony chair, in my cute tight skirt, relaxed from intoxication and laughter, I failed to notice that my pelvis and low back were forced into a terrible position and getting severely strained. Should we call this a drunken accident? Perhaps. 

The next morning I felt off, but couldn’t say how. This happens before a major pain episode starts. Sometimes I can become inexplicably emotional. Sometimes I just feel weird.

I feel strange. Carrying my backpack seemed like too much, so I went with my small bag. Am I hungover? I wondered, waiting for the shuttle to The Show.


At The Show (as we insiders call it), I ran into Kumail Nanjiani from Silicon Valley. I love Silicon Valley. I’ve got a thing for geeks. He was kind enough to pose for this pic.  He is smiling awkardly because I was talking to him about the last season as if the characters on Silicon Valley are real. He thought I was nuts.

He thought I was nuts. 

He thought I was nuts. 

Later that day, in a Thai restaurant, halfway through the meal, I felt that intense spasming around my tailbone start, that is just so so painful it is hard to breathe. I ignored it and hoped it would pass. Often it does. Not this time. Spasming began around the top of my neck. Then the rest of my spine came to the pain party. Oh fuck. Meal over. Feels like I got kicked in the head. Time to get up and move around. Not a choice, really. I could not stay seated for one moment more. The grip of pain was clamping down on me.

Since I had only brought my small purse and not my backpack, I had no drugs with me. I only had room for my wallet and phone. I begged a stranger on the street for some ibuproen and Tylenol. A lady took pity on me and gave me some.

I begged the restaurant for a sack of ice. They gave me some.

Icing my back in sunny downtown San Diego.

Icing my back in sunny downtown San Diego.

I hoped I could walk it off. Nope. I had the metallic taste in my mouth and the dizziness. Spine destabilization. Neurological involvement. This was going to be bad. This was the kind of pain episode that used to make me run for a morphine tablet screaming. Fun times those were. (sigh) These episodes do not get that bad now because I am so much stronger and my collagen is more stable. But they are excruciating. 

Certain stretches can help relieve an episode like this. I have a Balance Ball at home just for this situation. I use it for nothing else, in fact. But that was at home in Los Angeles.

I know where Urgent Care is in San Diego, because the year before at Comic-Con I tripped and fell into an exhibitor’s glass display case. It hurt so much, I was sure my hand was broken. I went to Urgent Care for an x-ray. They were lovely to me, by the way. Nope, it wasn’t broken.I had smacked a nerve on the side of my hand. The doctor offered to give me Norco. Nope, too soon to take an opiate. 

The year before, getting my hand x-rayed. Ouch.

The year before, getting my hand x-rayed. Ouch.

This time, with my spinal meltdown in progress, I wanted to wait out the intensity. It should pass. Spending vacation time at Urgent Care is no fun. Also it was across town, too far to walk. I would have needed an Uber, and my spine did not want to be in a car. I did not want morphine anyway. 

Gritting my teeth, we went into Goorin Brothers, a marvelous hat store we always visit during Comic-Con. That San Diego store has great inventory. There were no other customers there. It was quiet, dark and cool. I told the saleslady my back was spasming just a bit and would she mind if I curled up on the floor in the back to stretch. She said no problem. She was very kind.

Mr. Pennington tried on hats. He was not being unkind to me. There was nothing for him to do for me. In pain, I prefer to be left alone. Comfort or pity won’t help. He found a few nice hats, while I rolled around in the dust in the back of Goorin Brother in my Michael Kors dress. I asked to use their restroom where I took off my dress so I could do some better stretching. It was all very classy. 

Finally the pain relented. I had a headache, was dizzy, and felt like I had been beaten up, or perhaps tumbled down the stairs. (sigh) Ehlers-Danlos spinal instability. You get beat-up on the inside, just from the forces of the world outside.

We had a sundae at Ghirardelli for some comfort. I had earned it. The worst was over. I felt terrible.

We always have one during Comic-Con.

We always have one during Comic-Con.

Then Mr. Pennington went back to The Show. I wandered around downtown San Diego, traumatized and feeling very sorry for myself. It is not fair for someone to have pain like this. I bought a pair of Levi's. 

I was stiff and sore for days after. I felt strained, in pain and like I was recovering from a bad fall. I iced myself when I was at the hotel. I took tylenol and ibuprofen. Not sure it did much. I took Flexeril at night.

Underneath that blanket are a few Ziploc freezer bags filled with ice from the hotel. I always travel with Ziploc freezer bags. They do not leak if you seal them properly. What do I care, it is a hotel bed anyway.

Pack in ice before shipping home.

Pack in ice before shipping home.

I have not had a pain episode that bad since. Amen and hallelujah. Anytime that tailbone nonsense has started it has passed quickly and not taken me out like this. Why?

When we got home from this trip, I expanded my exercise routine to improve my spinal stability, which I will tell you about next. I never wanted to go through this again. I hope I never do, please God. I will tell you about my exercise regimen very soon:

Searching for spinal stability.

I’ve been busy, back in Japanese class, re-organizing my entire house (that is a way to find inner peace and get something done at the same time), and traveling to Las Vegas for the EDS Society Global Learning Conference which was life-changing fantastic! Cannot wait for those videos to be available online. 

Next week is Global Genes Rare Patient Advocacy Summit, my absolute favorite place to be someone who was born sick. I go every year.

No time to write about spinal stability at the moment.