Brushing My Teeth to Healing

I put some toothpaste on my toothbrush, and raised the brush to my mouth.

“Oh Gawd,” I thought to myself. “Again with brushing my teeth?”

And that’s how it was. Everyday things were such a struggle that it had become a thing. At one point, I had to start my day by brushing my teeth, then lie down for a while, then wash my face. Showers were carefully timed for days when nothing else was imperative. This was better than when I couldn’t get out of bed but it was hard to feel any gratitude.  Continue reading

The Courage of My Liver

There is a pain in my torso as I write this. Last week, one of the liver support supplements I take ran out before I ordered a new jar. “It’ll be fine,” I thought to myself. I was wrong.

As I placed my order online, I realized that this thread of recovery regarding my liver perfectly reflected the overall tapestry of my experience with Chronic Fatigue.

First nobody knew what was causing the pain in my side. Then a doctor in 2008 figured out that it was my liver. Looking back I realize that when I was on a daily regimen in 2006 which included inhaling glutathione and N-Acetyl-Cysteine as prescribed by Dr. Young, this must have really helped my liver. But after keeping up being on a nebulizer every day for over a year, I couldn’t make myself go back. Continue reading

Radio Silence – Literally!

It turned out that I had called Glenn in the middle of a difficult moment for him. I must have been silent for a full fifteen seconds before I finally spoke. “I’m going to run this by you just in case you’d like to do it anyway. Have you ever been curious to see the inside of KQED studios?”

I practically heard his mood lighten over the phone. “That could be interesting,” he replied.  Continue reading

Learning to Pause

Learn to pause … or nothing worthwhile will catch up to you.

–Doug King

The above quote gave me, well, pause! Is this what CFS is here to teach me? Maybe that’s what “Morgan” meant when he said I was experiencing a “reality check.”

I’m determined to make good use of this lesson. And when I get further with figuring out how, I’ll tell you all about it!

It’s amazing – the mere process of pursuing this intention is already beginning to reduce my anxiety. See you soon.

One Minute CFS Video

I often get asked what Chronic Fatigue is like. Each time, I just don’t know what to say. How do I explain the myriad features that add up to this unusual, disabling condition? Or that if I spend spontaneous time with you today, I may not be able to do the things I’ve planned for tomorrow?

Most people can’t fathom what it’s like to feel beyond tired. And I don’t remember what normal feels like. The good news is I also can’t remember what struggling to get out of bed by 5pm felt like.

So, please take a look at this 90 second video by Alex Howard. It does an excellent job of quickly conveying an answer. My favorite part is when the pink teddy bear says to the brown teddy bear, “Have you ever known me to be a lazy person?” If you’re a CFS/ME/Fibromyalgia patient you might want to share this post with your friends and family!

CLICK HERE TO VIEW VIDEO

 

What Do You Think of the New About Page?!

 

Money, money money. According to our research, many artists feel uncomfortable with money…talking about it, asking for it, including it in the conversation around their art. Get over it!

In 2010, I was delighted to discover that my storytelling and blogging work qualified as art eligible for Fractured Atlas membership. Having tried many things that unfortunately, had to be given up for lack of sufficient strength and stamina, I had been wondering how I might earn a living again. The existence of Fractured Atlas suggested that I should make a business of my new cause.

After applying for fiscal sponsorship, I took a few online courses. The first course began with the above quote. Gasp! I had to stop and think about this. Like most people I know, my only interaction with the non-profit world had been as a donor. This was my first experience as an official artist and as a member of the non-profit sectorContinue reading

The Story of D-Ribose

In the Fall of 2010, my supply of D-Ribose lapsed for a few days. I’d been taking it every day since July 2008 and was surprised to see how much I deteriorated without it. My mental stamina tanked, I began to feel increasingly disoriented, and my body was hurting and stiffening, more and more. I’d forgotten how bad, bad used to be!

Then I remembered what I had read about D-Ribose and realized I needed to ask for help. A very kind friend drove to Whole Foods and got me an expensive jar of the white powder to tide me over until my online order arrived. Here’s the story, extracted from an article by Dr. Teitelbaum, that led to my trying D-Ribose in the first place. It may seem a little technical at first but it gets really good.

D-Ribose - A Very Powerful and Natural Body Energizer

by Jacob Teitelbaum, M.D.

Continue reading

The Catch-22 of Exercise, Chronic Fatigue & Fibromyalgia

I turned down the golf-cart ride back to my room. “No, I’ll walk.”

It was a beautiful day in December 2006 and I was feeling good. I had been at Dr. Young‘s clinic in San Diego for many days. Laundry and food were done for me, saving my energy. I had recovered from making the trip and from the detox reaction that had resulted in Dr. Young being up with me most of the night.

I began to walk through the avocado trees to my room. About halfway, I started to think perhaps I shouldn’t have tried to walk it after all. But I still thought I would make it. I was just going to be painfully tired when I got there.

Soon, my door was in sight. But as I walked towards it, the door began to look like it was moving further away from me down a tunnel. Suddenly I couldn’t command my limbs to continue. I couldn’t even quite get my lips to work properly. “Help,” I tried to shout. But I must have been too weak. Nobody heard me. I let my body drop down to a crouch. “Help.”  Continue reading

To Sleep, Perchance to Dream?

Now that I’m sleeping five, six even seven hours at a time, rather than two or three hours, I’m starting to feel like an expert! It’s only taken me four or five years and a long list of trial and error:

  1. Recommendations from Say Goodnight to Insomnia
  2. Supplements from SHINE protocol and various doctors
  3. Hypnosis
  4. Ambien & Trazodone
  5. Brain Training
  6. Heparin injections

I still need a lot of help with my sleep but the pills usually work now and I don’t need as many. Other than the obvious difficulty of being awake at night, I would say the most challenging part was the Heparin injections which I had to administer myself. I’ve always been gung ho about doing whatever it takes to recover from CFS/FMS but when it came to teaching me to put a needle in my own flesh, I had to be pushed.  Continue reading

A Word about Trauma, Chronic Fatigue & Fibromyalgia

“The only time I’ve seen results this bad was with a patient who told me stories like, “My mother got me through the Holocaust and when we made it to the States she killed herself.”"

By 2008, I was being treated by a department at California Pacific Medical Center that specializes in complex cases. One of the first things they did was a neurotransmitter test and their reaction to my test results clued me in to the connection between trauma and Chronic Fatigue Syndrome.

I looked back at my life. What could equal the Holocaust combined with a mother’s suicide? It was obvious to me that as a young child, I had experienced my parents’ divorce in a traumatic way. It wasn’t the fact that they divorced; it was the way they didn’t appear to hold anything back in using me against each other. I imagine that when I continued to do well at school (albeit a little less so), the effects of their behavior on me were too subtle to get their attention.  Continue reading