On HEDS and Covid-19

So far, only diagnosed with Hypermobliilty Ehlers-Danlos Syndrome.

No Covid-19. Not yet. But I expect to get it any day.

I hear from doctors that tests are not available here. Ah, so that’s how we’re not going to get it.

Stocking Up

Mr. Pennington and I did a shopping trip to stock up weeks ago, seeing the shut down of society as a real but unlikely possibility. And here we are.

Los Angeles is not shut down, but since most of us were told to stay home from work, everyone is at the grocery store. I’m glad I went early.

We got enough shelf food that if someone in my household gets sick — so far just cases of hypochondria — we won’t need anything from the outside world.

Got lots of laundry detergent, trash bags, soap, cold medicine, Tylenol, toilet paper and tissue, although I’m using a wash cloth to dab my face in order to conserve the facial tissue since I have all that laundry detergent, and what if I have a really good cry in April? I don’t want to be out.

We have a nice wine collection but I’m not drinking during the pandemic because i don’t sleep as well if I do. I must keep my immunity up.

Since this is earthquake country, I already have a nearly limitless water filter, duh. It’s a Berkey, and the water is very tasty.

I have a package of 50 face masks from when I got sick with a lung infection in Paris. Only used a few.

Here’s the medical clinic where the French doctor had never heard of Ehlers-Danlos.

The mask kept the dust and pollution out, so I would cough less. I got on with my fun. That day it was getting a Ferragamo belt for Mr. Pennington during soldes at Galleries Lafayette. Mr. Pennington was home in Los Angeles asleep so I had to pick it out without consulting him and hope he’d like it. He did.

How epically sexy was that French salesman?

I am stockpiler by nature because of the way I grew up.

My mother had borderline personality disorder. She was a World War II European borderline, quite a different beast from a female American borderline. Nothing cute about her drama, like we had with Princess Di and Marylin Monroe. Oh how I wish she’d done some barbiturates, vomiting, cutting or thrown herself down stairs to get attention. No offense here to anyone with a personality disorder, including the Clown-in-Chief who is confused why we are not talking about him. When this is all over someone will do the math on how many American deaths could have been prevented if he had treated the coming pandemic with the same attention he used to pay off his mistresses.

The stuff that goes wrong during childhood when you are trying to bond and figure out how to survive with your caregivers is totally real, and not any more your fault than possessing a faulty collagen gene.

If that went wrong for you and your personality is malformed — or not integrated, as they say — you deserve the best help in sorting it out. Find effective treatment. Read everything you can. Insist practitioners help you get better, knowing full well most won’t be able to. That’s all I do with my rotten case of hEDS. It’s exhausting but what choice do we have? Just suffer? No thanks.

I have great compassion for my friends with a borderline diagnosis. A lot of my male friends like to date them. I’m glad people talk more openly about such things. It is an extremely common problem.

In the case of my mother, who did not have EDS, being her victim against which no one defended me, I save my compassion for myself. She was brutal and domineering and violent. Think OJ Simpson. Always acting out, never self-punishing, with a boundless sense of entitlement and self-righteousness, just waiting for the day the world would rise up and agree with her that she! was! right! and affirm that her enemies deserved smiting. So I stockpile because she always took what was mine and ruined everything. If she knew I was actually really sick growing up, she’d be disappointed. She wasn’t as powerful as she thought.

I’ve coped as best as I could. I’m not shopping addict. I have no compulsion to buy. I just feel better having a lot of something around. I don’t want one candle. I want 17 candles. What would one pair of pajamas do for me? I’d like 9 please! And believe me, there is no waste here. I love and use them all. So I am naturally prepared for natural disasters, and, turns out, pandemics, which seems so out-of-place, so two or five centuries ago.

Covid-19

Having awarded myself an honorary medical degree after spending untold hours reading the PubMed, and recovering from my horrible case of Hypermobility Ehlers-Danlos Syndrome, the thing I am enjoying most right now is the scientific discourse on how we are going to manage and treat this thing and survive it. Wanna go deep? Watch this.

What steps am I taking?

It is my wish and hope not to end up in the hospital and definitely not the ICU. I would not like to be intubated and on a ventilator.

My life lived well now was made possible by McGuff Pharmaceuticals, the manufacturers of Ascor, who used to compound it for me, before they secured the patent on it. It’s just Vitamin C, sterile and stable for injecting, which I do everyday. That has made me healthy and strong and high-functioning. That has made other modalities work on me when before they used to fail. Like exercise!

I have a stockpile of Ascor, made possible because the expiration date on it is a long way off. So naturally, I drove to fabulous Orange County and got my hands on more. I give myself extra shots when I am injured or sick. Seems to help.

I also have many, many syringes. I won’t even say how many. Okay, like 400. Plus needles for sucking that thick liquid out of the Ascor vial.

Even with so many, I have switched to filling a syringe completely so as to conserve them rather than breaking it into two smaller, less painful doses. Just in case we can’t get enough plastic from China to make more. I was already injecting extra to help my foot heal. It also keeps my poor immunity high.

I overbought so many boxes of alcohol swabs for travel. I’m prepared in case I get through my bottles of rubbing alcohol. Didn’t know there’d be a run on that.

I’m taking lysine and zinc. I hate supplements. I try to avoid them. They aren’t magic and who knows what’s even in them because they are not regulated. But those can help with viruses, fingers crossed.

Food is not magic, either. 

I don’t follow a special diet except I try not to upset my stomach, which is behaving these days. I stocked up on what I love to eat: Spam and popcorn. And coffee.

I am prepared to survive anything!

There is one food that is perhaps magical that I try to eat everyday . . .

Natto

or fermented soybeans, a Japanese staple. Full of probiotics, the elusive bone nourishing vitamin K2, and super-powered enzyme nattokinease, consumption of it is associated with longevity. Read more here.

It is delicious, although perhaps an acquired taste.

I douse it in soy sauce, to keep my hydration and blood pressure up. I eat it for breakfast.

Get it at a Japanese or Korean grocery store. If you are a non-Asian and you ask where it is, the store employees will be very impressed because many Asians can’t stand it.

What else is magic?

Prescription drugs.

Get the doctor to write the doses or frequencies big so you can stock up for events like these.

I have extra bottles of my prescriptions because I always ask for more:

Microzide which I take to keep my bones strong and so I don’t get a kidney stone from injecting all this ascorbic acid.

Naltrexone which I dissolve and take 10 mg of twice per day. That’s a scant two tablespoons. It keeps my immunity up. It’s such a great drug, like magic!

I have no opioids, so don’t break into my home, please. Thanks.

Bernie Sanders is hopelessly naïve about healthcare and big pharma.

The FDA is a big part of the problem. Do you know how much money it takes to get a new drug to market, to get it approved? Never heard him mention that, just wiping out tons of jobs in the insurance industry and those big bad greedy drug execs. What a mess that fantasy is, if you dissect it. At least the insurance industry controls prices and fraud.

Oh well.

It’s more relaxing to think of the world in non-thinking terms of us vs. them. It takes a lot of brain power to instead consider how complex problems are, what it would take to solve them. That’s how we got the Clown-in-Chief we have now. Simplistic fantasies. Blaming clearly labeled enemies. Ignoring reality and science.

Oh well.

If things get really desperate, I have Valentine’s Day candy I have not yet opened.

I wrote more about surviving self-isolation for the Pain News Network: