December 2022 marks 10 years of injecting Vitamin C every day.

No problems so far. No kidney stones. Just one injection site infection back in 2017, but that was from the needle not the ascorbic acid. Yay!

I meant to get this post up in December, but I was so busy trying to get home after getting stranded by Southwest.

Now I am stuck at home with the covies and nothing better to do, so writing it is.

Normally I spend my weekends on

• tennis

• running on the deep sand loaded with 24 pounds of weights (my 16 lb weighted vest and one 8 lb dumbbell)

• benefiting from the cold exposure of a wintertime Pacific Ocean swim (to get in the water, I have to run a mile as hard as I can on the sand so my flimsy, low blood pressure body can tolerate the freezing water)

So, you see, I have little time to blog. And little interest! All that is way more fun than typing.

I write this blog to tell my story. 

Not to win converts or get a following, or convince anyone to do anything. Your medical care is between you and your doctor.

I was totally horribly completely disabled from Ehlers-Danlos fatigue, suffering, and pain.

That reversed when I began injecting Vitamin C every day, which was 10 years ago in December of 2012. Healing took time. I have never stopped improving.

Vitamin C helps collagen, bones and healing.

Results: Of the preclinical studies evaluating fracture healing, 2 studies reported significantly accelerated bone healing in the vitamin C supplementation group compared with control groups. The 2 preclinical studies evaluating tendon healing reported significant increases in type I collagen fibers and scar tissue formation with vitamin C compared with control groups. The 1 preclinical study after anterior cruciate ligament (ACL) reconstruction reported significant short-term (1-6 weeks) improvements in ACL graft incorporation in the vitamin C group compared with control groups; however, there was no long-term (42 weeks) difference. Of the clinical studies evaluating fracture healing, 1 study reported no significant differences in the rate of fracture healing at 50 days or functional outcomes at 1 year. Vitamin C supplementation was shown to decrease oxidative stress parameters by neutralizing reactive oxygen species through redox modulation in animal models. No animal or human studies reported any adverse effects of vitamin C supplementation.

— From: Efficacy of Vitamin C Supplementation on Collagen Synthesis and Oxidative Stress After Musculoskeletal Injuries: A Systematic Review

I did not benefit from high oral doses of ascorbic acid (another name for Vitamin C) over extended periods of time. If that worked, I would do it! Those shots hurt.

Pumping the vitamin C into my flesh with a syringe, my body gets it. My collagen benefits.

If you want to try it, you’ll have to find a prescriber. Ascorbic acid is extremely safe.

I’d start with a low dose because the shots tend to sting. I think some pharmacies can add a neutralizing agent to make it sting less, but I always forget to ask. I am used to the shots so I don’t care. I would do them if they hurt ten times as much. Being disabled by EDS was much greater suffering than a stupid shot that stings. 

What is the right dose?

I don’t go by blood tests because none were available ten years ago. Lab tests only tell one part of the story. I am looking to super-nourish and improve my collagen.

Last year, I lowered it to 500 mg per day. After some time (I really wasn't paying attention and didn't write it down, sorry) ugly purple-lavender bruises of unknown origin began to appear. Ah, the old me!

So, I resumed my long-time former dose of 750 mg per day. The easy bruising stoped. Yay!

Am I less flexible?

I named this blog hoping, wishing, and assuming that if I got better I would become less flexible.

Ten years out, I have not.

I am still very hypermobile, everywhere. However, now my collagen is stronger.

Now, I am a very hypermobile person with an hEDS diagnosis who is not being taken down by my disease. I’ll keep doing my C shots every day, until a better treatment comes along.

Hypermobility is a serious medical condition that must be cared for from many directions.

I believe — and I am not the only one — that exercise and strengthening is necessary for improvement of issues that arise from or are concurrent with hypermobility.

I highly recommend Lillian Holm’s blog for a guide.

I am always going to physical therapy.

However, exercise is vital for every human body. Like eating, flossing your teeth, sleeping, connecting with others, feeling useful, finding meaning, experiencing pleasure, one must move and lift! Yes, you can skip those, but how is that goinna work out for ya?

But I need exercise for different reasons than the normates.

Injected Vitamin C:

• PLUS exercise (which reduces pain phenomena)

• PLUS circulation (which relieves POTS and fatigue)

• PLUS strength (so my muscles can manage my loose joints)

• PLUS improving posture/joint usage (so I do not damage myself)

• PLUS vibration and impact (to speed the turnover of collagen so that with extra C it can rebuild stronger)

• PLUS treatment to de-sensitize my body's pain feedback (which may also help fatigue as pain and fatigue are disease states of the brain)

is the recipe for a better me.

Without injected C, I was too fragile for exercise.

I could not tolerate, progress or benefit from exercise before I began injecting Vitamin C every day.

I wish the C shots were an instant fix.

They are not. Healing of this massive scale takes time. Collagen is everywhere in the body.

I wish the shots didn't sting so much (apply heat and get circulation going FIRST, it helps).

I wish I hadn’t been born with EDS.

But here we are.

And where is here?

During the pando, I quit my job and moved to Berkeley to finish my degree, which I was too ill to do when I was 19, a great tragedy of my life.

Back then, I had no family support. Disabled student services were very limited and didn’t include people like me, which didn’t matter since I didn't know I was disabled.

Growing up, I did not know why other kids could function and I could not.

I had no idea how incredibly sick I was and what an utterly different life experience everyone else was having. EDS is high-burden disease that takes all your attention so I couldn’t notice.

As my health improved and improved over the last 10 years, Mr. Pennington would say, "You are unhappy about not finishing college. Do you want to move to the Bay and do that?"

"No, no, no," was my answer.

School and being around the kiddos were not my idea of fun. I liked my life before covid, my grown-up life and its freedoms.

And truthfully, I didn't think my back could take it. School is a lot lot lot lot of sitting and reading, a big challenge for a painful hypermobile spine.

But, as I have said, I had continued to get better. When the pando hit, my back was ready.

I quit my job and got re-admitted to the University of California Berkeley (yes, that one, the #1 public university in the world) to finish what I had started.

School was so f*cking hard, and what’s with the insane amount of reading they assign?

I sat on the kitchen floor and cried a few times during that first semester. I didn't think I could do this. Did I mention, I was taking over the maximum unit load? You need to be charming to get permission to do that. And I tried to be as charming as possible when asking questions like, “Um, how do you write a college essay?”

Eventually, I figured out what I was doing.

When classes resumed in person, I moved to an apartment where the Center for Independent Living used to be — a monumental location in the disability rights movement, which, BTW, originated in Berkeley, California.

Mr. Pennington walked the campus of UC Berkeley with me, slapping my shoulder, being the proud parent I never had, saying over and over, “This place is amazing! Wow — that you get to be here!”

I have been with Mr. Pennington since I was a very sick 25 year old.

I asked him, “Can you imagine me getting around here back then?” You see, the enormous campus is built on a hill, very spread out, and nothing is in a straight line. I used to fall on my way to class because my knee would give out.

“"No,” he said. “No, I cannot imagine you being able to walk around here and get to anything. You couldn’t have done that.”

But now, healthy and strong, a big campus built on a hill is not a problem. I’m a great walker in spite of it all. And I am great at carrying my stuff, in spite of it all. In fact, I make my bag extra heavy for the strength training. I have energy every single day, for most of the day.

F*ck spoons.

I continued with my over-the-maximum unit load because they don’t charge per unit. It’s the same price per semester no matter how many classes you take.

Besides, I had goals.

I completed my major, three minors, wrote a thesis, and graduated with honors.

My thesis was brilliant. Here I am presenting on it at the Townsend Center. That was a great moment of my life.

When Mr. Pennington came to visit, we watched baseball, cruised the bay, or he waited for me in Dwinelle Hall.

I loved school.

I loved living in the Bay Area. There was so much to do and see. People are well-read. They appreciate art and culture. They are sincerely gracious audiences that are wonderful to be a part of.

Then, one day, I graduated.

Mr. Pennington and I toasted my accomplishment at the Napa Four Seasons. We swam in the healing hot springs at Dr. Wilkinson’s Calistoga spa.

And then moved me back to Los Angeles

To the land of smog and no parking

Where the shape of your ass is what matters

Not what you read, or even if.

I ❤️ LA!!

Other recent triumphs:

I put on 10 pounds of muscle

which might be even a bigger deal than my degree, if you have EDS as bad as I do.

How do I know?

I got a hydrostatic weighing, which is highly accurate for determining body composition.

This happened from injecting testosterone and always working out with loads (weights). Even when I do cardio, I incorporate resistance, as heavy as I can manage.

I saw the word “normal” on my DEXA. WTF?

A DEXA is a scan to guess at bone density. Since it’s not that great a technology, you need the relative change from year-to-year, done on the same machine every time. Such a hassle!

My wrists — which were my weakest area — made huge increases and achieved “normal.” I did not know my bones could even look normal on a DEXA. Bones are mostly collagen with a sprinkling of calcium.

Yay!

My endocrinologist had suggested I take up tennis.

I did not have time with school, so I threw weighted balls in the air about 60 times per hand about 4 times per week.

I also never walk without carrying a heavy bag in my hand. If I have nothing to carry, I lug my 15 lb kettlebell all over town. I have to be careful not to leave it in a store or restaurant.

That was enough to cause such a huge improvement.

Impact and weights build bone, tendons, ligaments, and muscles.

I took up tennis after I moved back to LA.

BTW, tennis has been f*cking awesome for stabilizing my spine, with all those repeated transverse (diagonal) moves. Bam!

Of course, it took a bit of time to adjust to the rigors of tennis, as does everything does with my delicate, flimsy body.

I am very patient with my body. And ruthlessly persistent.

I got TMS for pain

Depression treatments often work on pain as well. Chronic pain becomes a disease state of the brain.

TMS (transcranial magnetic stimulation) is a treatment for major depression, but the machine can also hit points with frequencies for anxiety and pain. Fantastic!

Insurance only covers TMS for depression.

If you want pain treatment, you can go to a clinic like UCLA has.

Or just get a diagnosis of major depression, which if you have chronic pain you probably can qualify for easily. Pain is devastating.

My hypermobile body is very sensitive and hyperalgesic.

I will always be looking for treatments to turn down my brain's volume on pain.

“But injecting Vitamin C is dangerous!”

I heard the Ehlers-Danlos Society told someone this.

Um, what?

Injecting Vitamin C may be pointless.

It may be a waste of money.

It burns sometimes.

But it is not dangerous.

Vitamin C is not a new, unproven drug with no track record. We know an awful lot about it. Worst complication is that you might get a kidney stone, but those are treatable and even preventable.

You know what is dangerous?

• Being disabled by EDS

• Not being able to support yourself

• Needing pain medication to get by

• Not being able to heal

• Chasing surgeries that may damage you more

• Being so sick you have no agency over your life

• Getting weaker and more injured

• Not being able to leave your bed, your home, and never feeling better

That used to be me.

Placebos reach their peak and wear off in a few weeks. They do not keep producing results for ten years.

So here I am.

Strong, smart (my brain works now that it is not taken offline by pain and fatigue), athletic, working full time, and livng my life.

All from injecting Vitamin C

Every day for ten years.

Plus pursuing all other treatments and modalities to make me heal and get stronger and healthier.

With my best friend of them all, exercise.