The Journey

Yesterday morning I woke up in Vegas.

I rolled out of my couch bed and headed into the kitchen where I helped myself to some coffee. As I took my first sips of caffeine, I noticed a postcard clipped to the side of the refrigerator. "Your Story Matters," the 4 x 6 card insisted. I was somewhat surprised to see this particular postcard amidst the other memorabilia displayed on my friend's refrigerator. I wasn't the one who had sent it to her, but I knew of its origin, and have the exact same card sitting on the base of the ledge of my mirror back in Michigan.

The postcards were distributed at the #Storyline conference I attended in Chicago this past October. We were encouraged to fill them out and send them to a few of our friends to encourage them in their life journey. Confession: I never got around to filling my cards out...

But over a Vegas dinner date? meeting with a successful business man the night prior, I was reminded, my story - my written words - matter. This man who had read my book posed the question, "How many people need to hear your story?" Then preceded to answer his own question. "Countless," he insisted.

He believes that countless people need to hear my story and to read the book I've written. Although this man isn't romantically interested in me, for whatever reason, this man is interested in seeing me succeed as a writer and speaker. He believes I have a knack for writing, and he isn't just saying that to be nice, or to flatter me for ulterior reasons. Already he has offered me invaluable "pro bono" consulting, and even agreed to meet with another man on my behalf to help me along in my journey.

Yesterday I drove east on the 70 though Nevada, Arizona, Utah, before crossing over into Colorado.

With my health being off the drive kicked my butt, but thankfully I didn't feel the impact of the drive until this morning. (That's the part of #CFS that's called post-exertional malaise, which is why I can often do an activity and feel fine in the moment, and don't feel shotty until afterwards. And sometimes, I don't feel shotty at all, which makes everything I do a gamble.) Today I woke up to a migraine and the words, "Huh, I've never seen snow on a surfboard before."

Thankfully, I'm staying put for a few days, to recuperate from the first half my journey and to celebrate my birthday with the friend who taught me how to surf 13 years ago.

Miracle Manor II

I arrived in the desert well before my check in time, so I took the time to explore the downtown. Although I had been to Palm Springs on several occasions, I never knew its downtown existed. My mission to find a yoga class to crash, led me to a delightful street of shops and restaurants.

As I moseyed about an art gallery, I considered the paintings and how "the one" I liked at age twenty-two would have enjoyed being in my shoes. I noted which paintings I think would have been his favorite, and deliberated as to whether or not they were my favorite too.

A few blocks down I was delighted to see a shop with the same name, both first and last, of the man I dated most recently. I snapped a couple of photos, and went inside just because it had his name written all over it. It was a men's clothing shop, and although he and I had parted ways months ago, there I was, thinking of him as I meandered about the store with no intention to make any purchases.

Further down the strip, I stopped in at an architecture and design museum to browse its gift store. The only reason I was in the desert was because of my architect friend from New York. He was the one who had arranged for me to stay a couple of nights at this retreat center he had helped design and build in the 90s. The only reason I stepped foot into the museum was because his area of expertise was now of interest to me.

On my return walk to my car, I noticed a park sign that spelled out the last name of my mentor friend. Again, I took a photo, just because it reminded me of her. By that point I realized that I wasn't walking alone. No, there wasn't anyone physically standing beside me. But the influence and fingerprints of those who have walked with me previously have stayed with me.

And so has Africa. In locating the Yoga studio, where I decided to return for 7 PM candlelight yoga

To be finished...

Miracle Manor

Yesterday I left the ocean and headed inland for a night before arriving in the desert this afternoon. Some time ago my NYC architect friend designed portions of a retreat center in Desert Hot Springs. After catching up over the phone last week, my architect friend insisted and arranged for me to stay a couple of nights at this retreat center. So here I am, at Miracle Manor. And, I'm still in need of a miracle.

Before I parted way with the Pacific, I sent an SOS out to God on the sand. "Heal Me, Please" are the words I penned with a stick that I found on my "final" beach walk yesterday morning.

During my time in Newport Beach I underwent treatment that I had hoped might restore my body and brain back to what it was before I was infected with malaria. The treatment center offered valuable information that will help me navigate next steps regarding my health; however, they couldn't offer me a cure for the CFS/Systemic Exertion Intolerance Disease that I face.

After spending Monday morning with my mentor friend Kim, and she sharing with me how well the same treatment was working for her husband, Monday afternoon I received the news that my body didn't respond to the treatment. Rather than recommending a month-long course of continued treatment, Dr. Alex informed me there's something going on with my body that is causing me to be resistant to this treatment. Typically it helps people to at least some degree, but not the slightest with me. He suggested a few reason why this might be...  and I'll continue to explore those reasons when I return to Michigan.

Day 2: Brain Break Through

Yesterday I said my good byes at noon.

By 5 PM, I was at my new "home" in Newport Beach, which is only my home until next Tuesday morning. That's when I'll once again load up my Corolla and venture to my next sleep spot. Which, as I write, I have no idea where that will be. I may, perhaps, say my good byes to California next Tuesday morning. Or I may scramble over the next few days to find a few places to stay so that I can remain out this way through my birthday weekend. We will see.

My old "home" wasn't even my home, but for some reason it was tougher than I thought it would be to turn in my keys to the stomping grounds where I've laid my head on an air mattress since arriving in California on January 10th.

I've never been a fan of good byes. (In Works... to be finished...)

Blizzards And Belief

After filling up near the AZ/CA border, I dropped by Dairy Queen to pick up one of my favorite dessert treats: a Butterfinger Blizzard. I then phoned my brother and inquired, "So how's the blizzard in Michigan treating you?"

He was snowed in at his place in Detroit, facing the woes of the worst blizzard to hit the Motor City in 40 years, while I was reveling in the warm weather of southwest North America. Cruelly, I shared with him that I was thoroughly enjoying a DQ blizzard in 70 degree temperatures.

The day prior, while on the phone with my parents, I had inquired if they were joining any of their friends to view the Super Bowl. My dad informed me they were snowed in and that church had been canceled that morning. They wouldn't be going anywhere, and would attempt to get reception on the 12" scree television in the guest room. (For the record, my parents have never had cable TV, nor a reliable internet connection, for that matter.)

On my final leg "home" from Phoenix, I thanked Jesus I wasn't in Michigan. And I did again the following week, when my mom informed me that the high for the day would be 8 degrees, and that Dad recently got his car stuck in the drive back to our home. Mom told me they had to call and pay for a tow truck to help get him out.

While my parents faced 8 degree weather, I faced the sun, laying out in 80 degree weather at the north end of Newport Beach. As I absorbed a large dose of Vitamin D, I read several chapters of a book my friend Lisa had told me about several summers ago, as we sat in a hot tub and talked about life, the disappearance of my latest man, and her engagement to her now-husband. That conversation took place in Grand Rapid, Michigan, in summer, when Michigan is wonderful.

But the segment I stumbled upon in that book that afternoon stated, "January in Grand Rapids is almost beyond description. It makes me think that maybe we heard wrong when God said hell is hot, because I think hell might be very, very, mind-numbingly, scream-when-you-open-the-door-cold, like January in Grand Rapids. Hot is tropical. Hot is flip-flops and the smell of coconuts, but cold is much more reminiscent of eternal punishment in my estimation. Like Grand Rapids in January." Cold Tangerines, Shauna Niequest.

The author's words once again confirmed for me that I had made the right decision to spend the winter season not in Michigan.

And then I went for a jog, barefoot, along the beach, and as I did I began to believe.

I began to believe that I was going to get my health back.

And somewhere between lifeguard tower 74 and tower 36, a woman sitting in her bikini hollers out to me, "You're awesome! And you're beautiful!"

 

Typically I wouldn't have heard such a shout out, but the batteries had died on my running radio that morning, so there was no music to drown out the sound of the waves crashing, the seagulls squawking, and this woman's words coming at me.

As I glanced back to see who said it, by how she was sitting beside a man, I sensed she wasn't a lesbian. I mumbled a thank you (that she probably couldn't hear), and kept going, thinking, perhaps someday, I'll reach awesome health status again. And that maybe, someday, I'll meet another man, who calls me beautiful by name, like the man in Colorado did.

This week I posted on facebook the following: came to CA to process my #CFS chronic illness only to discover a treatment center in the OC that thinks they can help... but could use HELP! w/medical bills. contribute 20 to 100 and i'll send you one of my books as a thank you. (* each month i'm gift about 4 to 6 "good" health days... yesterday was one of them... i was also gifted a free lift ticket - hurrah!)

Next week I start treatment in Newport Beach. And so we'll see if my body responds positively to it...

The "Practice" of Smiling

At the end of "Week 3" (i.e. the end of January), I drove east to Arizona to celebrate Super Bowl weekend. Friday evening I ventured downtown with a couple of friends to absorb the pre-game energy reverberating throughout the host city. Although my head hurt (as it often does these days), I found myself smiling like I used to on occasion in New York City, when there was no real reason to smile, but rather you just feel alive, and the smile comes naturally. (And then some man thinks you're smiling at him, and you have to clarify, no, not you buddy, I'm just smiling at life.)

My Qigong instructor recently encouraged us to implement smiling as a practice. She explained to us that she has been on retreats where everyone is instructed to maintain a smile on their face for the duration of the retreat, even if they're not feeling particularly happy. She said by the end of the retreat, everyone felt loved (by the friendly smiles they received) and they felt happy, and wanted to continue to smiling just because, because the practice had become habit over just a few short days.

She encouraged us to smile more to help spread happiness in the world.

But in Phoenix, the smile just came, and then I found myself dancing in the streets, when no one was dancing near me. But there was music - fun dance music - coming from somewhere. Thankfully, Saturday night, I joined a "real" dance party, where others danced the night away with me. Again, I smiled big, and felt grateful that I had made the trek out to AZ just to be goofy with a couple of my old high school friends and the crew from their neighborhood.

 

And on Super Bowl Sunday, I didn't wake up with a headache.

  

Migraine headaches tend to make you smile less than the average person. The past 10 days, I've faced a headache EVERY single day, and my migraine medication didn't help. (But thankfully I've had friends that did, help with the smiling, that is...) Today it feels like I won the Lotto; the day is nearly over, and no headache, of any sorts. :)

But on my way home from Phoenix, Monday afternoon, another headache set in, reminding me I had my fun, and now it was time to pay up. At least the gas was cheap. Only $1.90 in AZ, about 2/3 the cost of what it is in California. So before I crossed the border, I stopped to fuel up.

And as I did, I noticed a Dairy Queen - open for business, in the middle of winter.

You have to understand, I have a thing for DQ Butterfinger Blizzards. And you need to understand, the closest Dairy Queen to me in Michigan closes at the end of October and doesn't reopen until the weather warms up above 50, which sometimes takes until the end of April.

As you can imagine, I was thrilled to see a Dairy Queen open for business.

To Be Continued...

Mitochondrial Dysfuntion

In December a good guy friend of mine in NYC reprimanded me rather than celebrated with me after I finally secured my malaria prescription. "Katrina, you do NOT have malaria!"

I acknowledged I might not have active malaria in my system, but it was likely the malaria I had been infected with in Uganda triggered Chronic Fatigue Syndrome (CFS) in my body.

My friend then wanted to know the science behind the illness, "Well, what causes Chronic Fatigue Syndrome?"

I told him, "They don't know."

"Sure they don't," he replied with sarcasm and skepticism. He then went off on some rant about a change in diet. Our conversation escalated into an argument. My first big one ever, I think, with a non family member. (I was actually proud of myself for how I engaged in the conflict.) He insisted, if only I ate the right food, I would get my health back. His insistence implied that it was my fault that I was still sick, and that it was within my control to heal my body. I shared with him that I didn't want to pursue special diets (i.e. paleo, gluten free, etc.) for fear it might trigger an eating disorder. And it went downhill from there, as he insisted that by me stating that, I already had an eating disorder.

A few days later "the guy from down the shore" told me over facebook chat that he has a neighbor with CFS who has been chasing after special diets for the past 15 years. His neighbor has tried everything under the sun and no food regiment, liver cleanse, or dietary supplement combination has restored his health. My therapist also assured me I don't have an eating disorder; instead, she told me I had good self-awareness to know what might make me susceptible to one. (That same night I shared my most recent NYC shenanigans, and had my therapist laughing so hard that I considered she should be paying me for my fabulous story telling.)

I mention all of this, because during week 2 out in California, I continued my investigative research and found some answers. Hurrah! I finally know the core cause of what it plaguing me.

After spending the past two years ruling out Anemia, Thyroid Issues, Adrenal Fatigue, Lyme Disease, Gluten Allergy, other potential Africa ailments (Schistosomias, Strongyloides, Filarias) and Pyschosomatic Illness (like PTSD and depression) ALL of which can cause various forms of Chronic Fatigue Syndrome...

Thanks to Dr. Sarah Myhill's presentation I FINALLY know the science behind MY health issues. I have mitochondrial dysfunction, which is a cells' inability to convert enough energy for the body to function properly. Think of it this way: most people get about 100 "energy credits" a day. However, individuals with mitochondrial dysfunction only get 10 to 20 per day, and when you spend more than what you have, your body crashes with debilitating fatigue and migraine headaches. Unfortunately it takes 25 to 50 energy credits per day to work a full time job, so...  that makes life a bit tricky...

Another CFS expert explains it like this: It's like your body blowing a fuse. When you do more than your body can handle, your fuse blows. Even if you "reset" the fuse, you'll keep blowing it when you push your body beyond its limits. The trick to living with mitochondrial dysfunction is to figure out a pacing for your body so you don't keep blowing your fuse.

That said, I think I need to start that company I've been dreaming of, so I can delegate out most responsibilities, and work 10 to 15 hours a week...  Ha! If only it was that easy. I know it's possible, but certainly are also a ton of obstacles between here and there.