Searching for My Molecular Diagnosis - Round 7

I left for the EDS Learning Conference in Nashville without enough completed blog posts for every Thursday I would be gone. Just ran out of time. Mr. Pennington and I went ahead to be tourists in Memphis.

Here I am visiting Graceland, the home of Elvis Presley. This was a spiritual experience, so I am jumping for joy.

I had tweaked my old knee injury working my Turkish Get Up a few days before. Oh well. Just gotta keep it braced for a bit, maybe get a prolotherapy shot if it doesn’t heal up on its own soon. I am curious to see how it goes. I am so proud when my body heals itself. These days it often days. The Get Up is a most invigorating and fabulous whole-body exercise, which I highly recommend.

My foot is still a problem sometimes. Last summer I was using a cane, so no complaints now. Walking all day in the heat and humidity, it swells a little. Compression helps a lot.

Exercise can be hard for me because I still have a delicate body. Energy and endurance are no longer problems. I cannot throw myself around and try just anything. I have a plan when I workout, one I am always striving to improve.

Once a spine in very sensitive to pain, that is hard to shut down. My neck will react most to new moves. The Turkish Get Up has been a lot to master, but I believe in it. What could be better than being able to get yourself off the ground efficiently in smooth, stable motions? What a big calorie burn, too.

I am the arbiter of what exercises I put my body through. I am the one who knows my body and pain best, when to push it, when to stop. I listen and learn from it. My greatest allies are ice and rest. By rest I mean time to recover, time not exercising.

I got fitness trainer certificate so I could communicate with physical therapists better.

I avoid all stretching and contorting activities like Pilates and yoga which have high injury rates and do little for strength. My opinion is that recommending Pilates and yoga for a hypermobile person is as cruel as recommending joint stabilization surgeries.

The spine and joint experts that have taught me to use my joints well are Esther Gokhale and Stuart McGill. I would be nowhere without their advice.

Yes, you can train your body to position your joints for optimum, efficient movement. In doing so, you can find a lot of pain relief. No surgery will ever do that for you. Stop making your life worse by pulling your joints into poor alignment with Pilates and yoga. Please consider any surgery thoroughly as many only cause more damage to us.

Facebook Hate

Somewhere between Sun Studios and Beale Street, I received the following comment about my blog on Facebook.

It inspired this post, so I am not going to miss a Thursday. Phew! Thanks commenter, whose name I replaced with a descriptive pseudonym.

Over a dinner of delicious Memphis barbecue, South Carolina slaw and Zinfandel, Mr. Pennington and I broke down why someone would say this, and what it could possibly mean. We’ve been together a long time. Sometimes we run out of things to talk about. We appreciated the topic.

You know what’s really good? Tennessee wine. Who knew the South even made wine.

Back at the hotel (where I sleep better than I do at home because the mattress at the hotel is very firm and at home I have a Tempurpedic which I used to need but just feels weird) I wrote the following response.

Dear Crazed EDSer,

Thanks for the shout-out.

I did reverse my rotten case of hEDS.

Ehlers-Danlos can put a person in a downward spiral into total disability. As the injuries and illnesses and autonomic dysfunction and surgeries and immune reactions pile up, many of us reach a point where we don’t recover.

I am one of those unfortunates who was very sick all my life, disabled since puberty. Sadly, that is not unusual.

Quite curiously, injecting Vitamin C everyday, exercising tons (posture correction and strengthening), salt-loading (I dump tons on my food to keep my orthostatic problems in line), and healing my brain with naltrexone (which I low dose in the a.m. and high dose in the p.m. because I found both doses to be tremendously helpful) got me up and functioning, better than ever. I never had energy or strength or resilience like this. F*ck yeah!

Before injecting C everyday, I was exercise intolerant and totally disabled with pain and fatigue. I had no quality of life. No matter how hard I tried back then, I could not improve my health.

What happened is, I went to see Dr. Plance for prolotherapy, since I heard he was the best at it. He did not want me to commit suicide. I really was in that much pain and had zero quality of life.

Dr. Plance’s plan was to try to get my body to heal a little. He tried many things on me, whatever he could think of next. This went on for eight years. He is a lot of fun, so I didn’t mind. In spite of my suffering, those years of my life, I would not trade. They were very special.

I felt better with C shots periodically. I begged Dr. Plance to let me do more at home. The more frequently I did them, the better I felt. And here we are. The daily Ascor shots made my body heal. How about that, because nobody would have guessed that would be effective treatment for hEDS.

I got off all pain meds. I had been on morphine and Vicodin and Soma for years. That is remarkable, no? Clearly this is more than a placebo. Something about the genetic error causing my EDS is being managed with these daily shots.

I completed California’s Department of Rehabilitation program and returned to work. I took a very physical job, because I thought I would not succeed. Guaranteed failure made trying less scary, and I was terrified. Kind of like being romantically interested in someone who is unavailable, it was psychologically comforting. As I said, I have been very sick all my life so I have a real confidence problem. But I did succeed because now I have endurance and never crash, so that was a surprise and f*cking awesome!

I fit the new criteria for hEDS. If you do, too, and you have a face shape similar to mine, the same skin quality, it is very possible that we have the exact same version of EDS. Injecting C daily just might do as much for you as it has for me. But who knows.

I don’t want to convince anyone this will work because I don’t know if it will.

I just share my story here, on my blog which I pay for with no ads, for your enjoyment and in case it can help you. We all need positivity in today’s world, wouldn’t you agree?

Writing my blog amuses me. It has been very therapeutic. Becoming able to coherently discuss trauma is part of healing. PTSD can be paralyzing. EDS is severely traumatic.

I do not get feedback like your comment. Obviously, you have not even read my blog.

Feedback I often get for my blog is actually Could you get a study going on this?

I say, why wait for that?

Ascorbic acid is a very safe drug and much is known about it. I inject 750 mg per day. My shots cost about $50 month, including supplies. How lucky!! Lots of drugs are extremely expensive and have terrible side-effects.

If you want to try it, just find a doctor to prescribe it. Somebody out there will. C is a very healing nutrient. It helps synthesize collagen.

Self-injecting is no fun, but you get used to it.

Other than the discomfort of the shots, the worst that could happen from injecting Ascor is a kidney stone, which is highly treatable and survivable.

Don’t wait for a study. Life is waiting for you.

I have had my life ruined by EDS, and I appreciate your frustration, Crazed EDSer. EDS is a high-burden disease that makes you so sick in ways that are hard to describe. Few people understand, which makes you crazier. Trying to get anywhere with doctors is a nightmare. Being unable to work, unable to participate in life is maddening. EDS is a life of torture.❤️

Today, I am at the EDS Learning Conference in Tennessee, at the beginning of Day 2, which has so far been marvelous. The progress in understanding our horrible disease continues to move forward.

I come to these events to learn.

I come to these events to make friends.

Mostly, I come to these events to come to terms, as EDS ruined my life. For my most of my life, I did not know what was wrong with me. I was misdiagnosed, accused of being lazy or having psychiatric problems, while I failed at everything, no matter how hard I tried, and I promise I was trying harder than any normal person could even understand.

But, onwards and upwards.

This morning, I was very happy to donate my DNA sample to the HEDGE study. One day soon, I will get a cause found. This is my seventh attempt in search of my molecular diagnosis. This one, I think, might be it. Thank you, Ehlers-Danlos Society.

I have been traveling for two weeks. Still going, no crash.

Last night I slept 9 hours. Mr. Pennington and I had many full days running around Tennessee and late evenings out. I needed to catch up. I cannot believe I went from the person who could never recover, never get enough rest to the person who bounces back fast.

This morning I did a massive weight workout and also ran on the treadmill in the hotel gym. There was no place to hook up my beloved TRX down there, so I used it in my room, with the door anchor.

To be able to exercise and benefit from it is a gift.

A gift given to me by a doctor who didn’t think I was unhelpable, who didn’t care what anyone thought, who was willing to try anything and believe we could be lucky. Why not?

Injecting Ascor daily for years, with time for healing did it.

I wish you the best, Crazed EDSer. Forgive me for making fun of your comment here. I don’t even remember your name. I used what you said to make my point. So, thanks.

We are on the same team. #EDSsucks