Ehlers-unDisabled Syndrome

Happy 2019!!!

I have more than 50 partially written blog posts in my draft folder. I could talk about Ehlers-Danlos forever, and about myself even longer, although I hate that this has been my life. Sure wish it had been about something else.

There are times these days when I am overwhelmed by the absence of pain in my body. I suddenly notice how nothing hurts, how my spine is humming happily and I have all the energy I need 🙂. It’s so strange, it stops me in my tracks. Then I think about what I have been through and it makes my head hurt 😔. I still have middle-of-the-night panic attacks about my former life of suffering 😫.

Maybe I will finish those drafts this weekend, schedule them to post, one every Thursday, and not check back in with my blog until 2020. After all, I am busy living now.

Sometimes my works-in-progress multiply and divide into different topics. Sometimes they collapse into themselves and get moved to archives to be used never, maybe because they seem too outside the scope of Ehlers-Danlos or maybe they are too snarky. For this Mr. Pennington makes me anonymous Twitter accounts. Why should good material go to waste?

Recently, I met with my design team and brand consultant (Mr. Pennington, so it was just weeknight dinner as usual). We made a few changes reflecting what my blog has become.

When I threw LessFlexible on the internet in May of 2017, it was a hurried project.

Midnight in Paris

I wrote and wrote in a mad frenzy, put my blog up and scheduled months of posts before I left for Paris, where I was going in hopes of curing the excruciatingly painful depression long-term opiates had left with me.

That’s the problem with long-term opiates: they destroy you even if you don’t overdose and die on them.

Getting off opiates hurts so much, it just isn’t fair. Opiates, even short-term, derange your endocrine system. The stress response caused in your body when you go off extended opiate use (I was on continuously for 6+ years) is beyond description, which is the problem with giving opiates to the chronically but not terminally ill. Even many healthy people cannot power through the agony of quitting opiates and the aftermath. How could a person in poor healthy? It is unbelievably cruel, totally misguided and wrong that patients who are stable on them are having them taken away.

I had a wonderful trip, but Paris did not cure my opiate-injured brain. I have blog posts coming about what did. I did not even know how bad it was until it relented, as I have a tremendous capacity to shrug off suffering and just get on with things. If you have Ehlers-Danlos, you probably do, too.

My blog has been churning for 19 months now. It was overdo for an update. The logo was this, which was too bile-yellow.

We considered this, but too Barbie Dreamhouse.

Almost went with this. Kinda wish we had.

Already taken by Nike.

Blue seemed like a nice choice.

Ah yes, the ocean. We settled on this. Hope you like it.

We made some changes to the home page, too.

How I became a very high-functioning EDSer.

• Ascor injected daily. Ascor is the brand name drug that is injectable Vitamin C.
  I get tremendous relief from all of my EDS symptoms when I inject C, but not from taking it orally. Why? Perhaps I hyper-excrete C or am otherwise not metabolizing it properly. When it is injected intramuscularly, it is absorbed slowly. Perhaps this gives my body opportunity to utilize it. Vitamin C is necessary to synthesize collagen and is a vital nutrient in many bodily process. It seems my genetic flaw is affecting how I metabolize Vitamin C. The human body should be saturated in Vitamin C. The human body needs a constant supply to maintain itself.

• Time to heal and catch up on sleep.
  I had decades of sleep deprivation to recover from. I became able to sleep with sporadic C shots. With daily C shots, I became able to sleep AND wake up feeling rested. Catching up on sleep and healing took time.

• Exercise and physical therapy, lots of it, to get strong and stimulate collagen repair.
  Only possible for me to do when I inject Ascor daily. Otherwise I cannot tolerate and do not benefit from exercise.

How to use your body without strain.

• Fanatical commitment to using my joints without strain.

  I had to learn to move with supporting muscles engaged. I had to learn how not to hyper-extended. I constantly work to correct muscle imbalances so my joints stay in alignment and pain-free.

• I must eat a lot of salt
  I hyper-excrete sodium, so I am perpetually dehydrated. Salt depletion causes fatigue and bone loss.

• Off all drugs that cause brain fog, fatigue or diminish cognitive functioning (opiates, marijuana products, sleeping pills, tricyclic antidepressants, muscle relaxants, anti-histamines, anti-seizure meds, benzodiazepines, etc.).
  Only possible after healing from Ascor, plus exercise that made my flimsy body strong enough to tolerate its own weight and the force of the tasks of life.

• Naltrexone twice daily.

  Naltrexone took my game to a whole other level, giving me a mental resilience and sense of well-being I have never had. What a fantastic drug.

See my blog for details. I’ve got to run. I’m off to work or exercise or swim in the ocean or take a class or hang out with friends or go on a trip, as I have slept well and have energy to burn.

Send the honorary medical degree to lessflexible at gmail.com. Thanks.