Why People Hate My Blog
and what I have to say about it.
It’s cool with me.
In fact, I kinda like it. Makes me feel relevant.
This is a blog about hope, about how I got better and about what my life is like now, with no apologies.
A great lady once said, “Never, never, never apologize.” That was Julia Child, talking about dinner. Eat that burnt, collapsed soufflé with a big smile on your face, as if you meant it that way, and expect your guests to do the same.
A few EDSers get a particular thrill from putting me, the EDSer who got better, in my place. One can appreciate the emotional satisfaction of such a move. But is it worth it? Someone I don’t know lashing out at me means nothing to me, but the person doing so may have confused herself into thinking she has done something productive. There are better uses of energy. Do one rep of a dumbbell exercise instead. Until I come to know someone out there personally, it is all just flashes of light on a screen, not a real human interaction. People will say things on line they would not say to your face. So there you go. It’s just not worth considering.
I do worry about other peoples’ opinions. Like if my boss and co-workers find me acceptable. If Mr. Pennington still likes me. If Dr. Plance will still return my texts. Overall, I am a hit. Yay!
This is not a blog of disempowerment and victimhood. No doctor-hating or positivity-shaming here. You will have to look for that elsewhere. Try The MIghty. Here are articles in the last email I got from the The MIghty’s Ehlers-Danlos feed.
Me & The Mighty founder, Mike Porath.
Who is helped by these?
❌ - Person who wrote it
❌ - Doctors
❌ - Other EDSers
✔️- None of the above
I think The Mighty can do better.
We are very ill people with very serious medical problems. Our quality of life depends on the medical care we can get. Best to learn to deal with doctors effectively, which is a real challenge with our very complicated, poorly-understood disease. I wrote about how I do that here.
I appreciate the goals of The Mighty, trying to create community among the isolation of chronic illness, but I prefer other EDS bloggers. I read every EDS blog I can. They are intimate and brave, with pics. There I have communion with my pain. ❤️🧡💛
I met the founder of The Mighty, Mike Porath, at Global Genes 2018, and I was impressed. He is a lovely human being and very inspiring. I cringed, thinking about the post I wrote making fun of the The Mighty. Then I thanked him for his efforts, and we took a selfie. Here are those posts:
But there are even better things to do on the internet, like shop or find another book to read.
Call me Imelda, please!
Look at these dope Sam Edelman loafers I picked up for almost nothing online. I feel like a pimp in them! Yeah!
I never thought I’d be an Imelda, not with my horrendous foot pain. That was so beyond my wildest dreams. But now I have a growing shoe collection. Everyday, getting dressed and getting out there is even more fun. It is so f*cking awesome!!!!!!!
My Old Life
Once, during my days of sporadic C shots, I had an appointment with my cardiologist to get to, and my car broke down. I was at the car rental place, crying to Mr. Pennington on the phone because I did not know if my unstable spine could tolerate an unfamiliar car seat. Should I rent a car and go? Give up and walk home? Would I end up on the other side of Los Angeles in too much pain to drive myself back? With those horrible waves of nausea, feeling concussed? And then the days of pain after? Crying, crying to Mr. Pennington, terrified out of my mind.
Who can live like that? Who could even understand such a disability? This is a horrible disease.
I feel tears, remembering my old life of one dramatic low, one unendurable pain episode after another. Unending days of soul-crushing fatigue, when I couldn’t even think.
I did go. I made my appointment and made it back home without a spinal meltdown. Even a little injected C and a little strengthening helped ease my life of agony. But a little injected C did not get me un-disabled. It took C shots every! single! day!
My New Life
How do I learn to live without such oppression? This is a strange, isolating journey.
On New Year’s Day 2019, Mr. Pennington and I hiked high above the city in the crisp, cool air. We looked down on Los Angeles and talked about our lives now and what we want our future to be. We could go anywhere and do anything, but first, brunch!
Nowadays, I am surrounded by collagen-typicals and the never-disabled. People with average problems, not terribly motivated to fix them, who don’t think too deep. What is this strange world?
Someone’s remark can remind of how much life I have missed, and my head starts to spin. I can get so overwhelmed, I may feel a little suicidal, but don’t worry because suicide is not my style. Too boring a choice. It has helped me to acknowledge that I am angry about what my life has been. Some say depression is anger turned inwards. Perhaps it is.
I have been getting EMDR regularly, from a nice guy who is in-network with my insurance, so it costs me practically nothing. I hop on the train to downtown and take the elevator up in a grand old historic building.
He and I don’t talk too much, which I appreciate. Re-hasing, venting, complaining can make those feeling stronger. Explaining it all drains me. Slowly, over time, he has gotten the picture of my life.
We do his EMDR thing for like 30 minutes and I leave. It can be a few rough days after, as my brain re-processes. It has been enormously helpful. The most productive appointments are the ones we have when I am all disturbed from crashing into un-disabled life. Luckily that happens often. I’m getting a lot out of my treatment.
My other useful treatments for my EDS-PTSD-Anxiety:
Naltrexone, 50 mg twice daily. It builds resilience in and re-regulates the brain. This is one amazing drug. Start on a tiny dose. It is powerful. You need time to heal.
Campral, another awesome drug for anxiety that no one is using. For a while I took one per day, which is a very small dose. It was plenty for my sensitive brain. It had a nice healing effect, perhaps combined with all that EMDR, naltrexone and my tiny does of 1 milligram of Lexapro. I did not take it daily for long. Unlike an antidepressant or continuous benzo use, no need to titrate Campral. When my anxiety seemed much better, I went to as needed use. I take it maybe once per week, If I am having a spell of anxiety that won’t relent. Phew!
The most effective neurofeedback system I have ever tried, by BrainRX. The brain is a complex electro-chemical organ, so why not help those stuck brain waves move, so you can be in charge of yourself. Mr. Pennington gets neurofeedback, too. We do everything together. We are very co-dependent.
Just last week I was riding a packed metro train home after work, when the gentleman in the row across from me awoke from his drunken slumber, yawned, stood up and urinated. He did it tastefully, through his jeans.
We all froze, except one guy who yelled, “Sir! That is not cool!”
Then I got up and pushed my way through everyone to the back of the adjoining car.
None of us used the emergency contact phone on the train, but looking back, I think this does qualify as a metro emergency.
All I could think to myself, as I stood the few remaining stops towards home, was: