On Being an Exhibitionist

The first thing I did in Seattle was wash Toronto out of my hair.

The W Bellevue is one fabulous hotel.

Every morning, I got a coffee (Seattle is a great town for coffee!) and cuddled the books in the lobby while Mr. Pennington slept. He needs a bit more sleep than I do. I was in heaven. I’m sure it was fine that I helped myself to all the books I wanted, right?

Nothing says fabulous like a co-ed restroom, with gender specific doors that sure fooled me. Ha ha.

The W Bellvue hotel room was so sexy, it was missing only a mirror on the ceiling. Guess they were trying to keep it just this side of classy. The decor brought out my inner exhibitionist. She is never far away.

Let’s take a shot! And film it!

Depress very slowly to minimize burn. You may not have a choice as that thick ascorbic acid can be hard to push through the needle. Be sure to warm the syringe in your hands first. Or tuck it in your bra for a few minutes, although the ink from the syringe transfers to your skin if you leave it too long. Cold injected Ascor is a pain you do not want to experience.

Let’s enjoy a coffee during!

Why not? I am such an old pro, I can multitask while self-injecting. The shots are an unpleasant part of my daily life, best to make the best of it.

I have given myself approximately 2,190 shots of Vitamin C over the past 6 years.

No problems, no kidney stones, no adverse reactions, only much better heath. Even most of my arthritis healed and my bones are strong. Oh, I did get one bad infection, but that was not a reaction to the C. That was a hygiene failure.

Dr. Plance tells me my skin and my flesh look and feel so different than when I first met him, which was over 12 years ago now. Yes, I am much less flimsy and infinitely more resilient than I was then. Back then, I was too fragile and too sick from EDS to function. Back then, I had no energy and everything in the environment, from the weight of objects and my own limbs and head, the pressure of my clothes, the force of air, and a lot of what I ate assaulted my weak, unsubstantial body. I have such an unstable spine, I cannot even describe the pain I was in. Perhaps if you are reading this you know what I am talking about. Being alive was sheer agony. Ehlers-Danlos is a disease of torture.


My injured foot and knee, both doing great. Before the C shots I could not heal. 🙏

Now, I am still too soft and smooth but I am strong and able to sleep, heal and repair. I have energy. I can build muscle enough to stabilize my joints from the inside, which is the best way to stabilize yourself. I can carry a heavy leather handbag without penalty. I can walk for miles day in and day out. I am a semi-competitive athlete. I even joined a triathlete group so I can run on the beach and swim in the ocean every week with friends. Triathletes are way fun. I love to run on the sand as much as I love to ride the waves. Can you even imagine?

I definitely cannot imagine how swim tights this fabulous ended up on clearance at SwimOutlet.com. I refuse to dress like a boring triathlete.

My connective tissue is stronger, even though I remain extremely flexible, which makes the name of my blog ironic. Or perhaps it is my ongoing prayer for even better health. I am greedy. Which should we say it is?

Genetic disorders are special diseases. One on-going error that will continue to go on every moment of every day of life causing malfunction and damage. Gene therapy (replacing the problem gene) is highly problematic. It can cause deadly immune system reactions, cancer and just go wrong. Long-term consequences are unknown.

I fail at producing proper Type 5 collagen, which is everywhere in the body. Many genetic disorders affect only one part of the body, making gene therapy at least simpler. What would it take to change my on-going mistake going on everywhere? I cannot even imagine.

Clever management of the problem caused by the genetic error is a better way to go. Click here for full article excerpted below.

For a group of genetic conditions called inborn errors of metabolism, which result from genetic changes that disrupt the production of specific enzymes, treatments sometimes include dietary changes or replacement of the particular enzyme that is missing. Limiting certain substances in the diet can help prevent the buildup of potentially toxic substances that are normally broken down by the enzyme. In some cases, enzyme replacement therapy can help compensate for the enzyme shortage. These treatments are used to manage existing signs and symptoms and may help prevent future complications.

No one knows what my genetic error is, if it is an inborn error of metabolism. It is known that Vitamin C is essential for making collagen. Vitamin C reduces inflammation and down regulates mast cells. What exactly happens to Vitamin C in the body and how collagen is made is still a mystery. Why does injecting C make such a difference for me when oral did not? Here is my guess.

I fit the new diagnostic criteria for hEDS. I have had every genetic study I could get. All resulted in cause not found. Finding the exact collagen malfunction causing hEDS will lead to a better understanding of hEDS and better treatment. There are several research endeavors going on now. That day is coming. Until then…

Having a rare disease turns you into an exhibitionist.

There was a time when I was shy. That was a long, long time ago.

When your life is trying to get anyone to understand your rare, life-ruining, poorly understood disease, you have bigger problems than maintaining modesty. Desperation catapults way you over to other side. 

Chronically ill, you are put in so many humiliating situations, you totally get over yourself. You just stop caring who you take your clothes off in front of, who sees you throw up. You don’t mind making a scene in the ER. What does it matter, who knows what meds you are on, what is in your genome, or blogging that you are a sometimes emotional mess with something of a drinking problem and that was before your therapist tried to blackmail you. You are just excited if someone pays attention to your rotten genetic fate. 

Please take how bad I feel seriously!

Please read my scans, my wacky lab work!

Please make sense of how and why I am so strangely sick!

Please care! Please try to help me!

No one knows WTF to do with me!

My life is an unlivable hell!

What’s wrong with normal people?

Normal people confuse me. They can be so uptight. They take themselves so seriously. Their sense of injustice can be astounding. They give up so easily, over such ordinary problems. Not that life is easy. It is complicated and confusing. But hopelessness is a spectrum disorder, greatly influenced by self-delusion. Rolling up one’s sleeves and trying, looking for solutions can solve a lot. Most problems have a solution. Not mine. Convincing yourself you are a victim surely must be a seductive part of human nature.

How strange it would be to go through life not desperate, taking for granted every day that you are healthy enough to get out of bed, taking for granted every day that you are without crippling pain, fatigue and other disabling symptoms.

I cannot even imagine.