Embrace your wings, you earned them!: March 2014

something to savor going into the weekend

"Begin doing what you want to do now. We are not living in eternity. We have only this moment, sparkling like a star in our hand and melting like a snowflake."

~Francis Bacon

wise words for the weekend

“The best and safest thing is to keep a balance in your life, acknowledge the great powers around us and in us."

~Euripides

I had a great weekend. I mean really, really great. We took a little two-day break from the 'burbs and drove a couple hours east to the California desert. I did pretty much everything I love to do: wake up without an alarm clock, read, walk, soak in the sun poolside, dine out, write, and I even snuck in some vintage shopping.

Oh, and NAP...TWO OF THEM. That's almost unheard of in my world.

Come Monday, the new work week began and I was *shockingly* feeling pretty good. I felt rested and my mind was sharp. The pain was much lower than it had been in months, and I was in a downright chipper mood.

And then my gentle hatha yoga class rolled around Monday evening...and I had the worst trouble focusing. My mind was NOT on the mat. My body was NOT cooperating. I mean, I was fidget central. And my breathing. Ugh, it was all irregular and shallow. Before long, I found myself getting aggitated with the woman next to me breathing a thousand times louder than any human being should. Seriously, she was like a sleestack from Land of the Lost. (If I lost you there with that reference, YouTube it. You won't be disappointed in the outstanding campiness of it).

So now I am once again, slammed back to my new reality. The three day respite was only temporary. I'm still chronically ill with a disease that has no cure.

Looking back, I realize now that the key to this short term "remission" was REST. And a shit ton of it. My body needs, craves - is crying out for - R.E.S.T.

Unfortunately, I don't have the luxury at this time in my life and career to grant that request. The scary thing is, I'm not sure I have the luxury to deny that request either.

t.g.i.f.

“It's not what happens to you, but how you react to it that matters.”

~Epictetus

navigating dark, scary waters

I’m not sure if the confusion and lack of focus I am experiencing is what’s commonly referred to as “fibro fog”, or if I am just still in shock over the diagnosis. I’ve coursed through a wave of emotions in the past week; relief, shame, hope, self-pity, denial, anger, defiance (it literally took me 10 minutes to think of this word – stupid effing fog).

It’s one thing to have your body be a total wreck, but quite another to have your mind so far out in lala land that it’s downright SCARY.

· What if this doesn’t go away?

· How can I continue to work?

· How will I function day-to-day?

· What the hell is going on?

· Is there a cure?

· Is there a cause?

This is a scary, dark place to be. I truly wouldn’t wish this on anyone.

setting ground rules

Dear FM,

If we’re going to live together forever, you and I, we’re going to have to establish some ground rules. Mmmm-K?

1) I have YOU, you do not have ME.

2) As much as you try and discourage me from staying active with your pain inducing tactics, I am not going to stop.

3) You can suck my energy dry, but you can’t take my fight and I will persevere.

4) This is not a sprint, it’s a marathon and I will kick your butt in mile 26.

5) Stay away from my kids.

While we will never learn to like one another, we can play nice if you acknowledge from the get-go that I am the boss. Capice?

Sincerely,

ShanLeigh

would you rather

Would you rather live without pain, or live without pleasure?

I never imagined that I would actually be faced with that decision. I mean, it’s like a bad college drinking game – except I’m playing for reals this time.

In my whopping 6 days of post-diagnosis research, I’ve unearthed a ton of different theories, diets, exercise plans, get-well-fast gimmicks, naturopathic remedies and detox regimes.

My Rheumatologist suggested to cut back intake of “inflammatory” foods. Um, do you know what that consists of? Pretty much EVERYTHING.

· Dairy

· Meat

· Sugar

· Additives

· Synthetic sweeteners

· Wheat and refined grains

· Salt

· Fried foods

· Tomatoes

· Hydrogenated and trans fats

· Processed, packaged, prepared food

· Alcohol

· Caffeine

So, I’ve already tried the gluten-free thing, and factually elt worse after two months of strict adherence. (Not to mention my grocery bill skyrocketed.)

One down (check).

Next? I will be cutting my morning cup(s) of coffee. This one is not going to be fun. I dread the headaches already…

street sign wisdom

Exactly. Happy Monday to you.

the air i tasted and breathed has taken a turn

"Fibromyalgia."

That's what Dr. W said yesterday at 11:54 am PST...my life is forever changed because of it, and it still hasn't quite settled into my reality.

I'm in research mode, ingesting copious amounts of information, research, personal stories, treatments, alternatives, support sites. You name it, I'm stalking it. This is my way of connecting the dots and coming to terms with my prognosis.

It took 40 years to put all of this together. From the time I was two years old, I would wake at night crying hysterically that my "legs hurt". The doctors said it was just growing pains. I got orange flavored baby aspirin tabs and the nauseating smell of Ben-Gay vaporub all over my extremities.

In my pre-teen years, participating in organized sports, I complained of pain in my legs, knees, feet and toes. By this time, I could more effectively communicate the type of pain and pinpoint where. The doctor said my tendons were too short and that stretching would help. Along with pain relievers and more of that blasted Ben-Gay crap. After that, I simply learned to live with it. It was manageable to a certain degree, and only flared up a few days every month or so. Tylenol and Advil became my best friends. {I'm so sorry, kidneys and liver}.

At 27, I sought help for dibilitating headaches. The doctor told me they were tension headaches caused by stress.

When my back began to give me serious trouble in my 30's, it was diagnosed as muscle spasms and treated with muscle relaxers and massage therapy.

For the past twenty years, I've sought help many times for extreme anxiety and panic attacks, insomnia, fatigue, TMJ and depression.

And finally, at the age of 42, all of these symptons (and others) have collided into one singular diagnosis: fibromyalgia.

Forty years of suffering was not "all in my head" or just part of my sensitive nature (aka weak tolerance).

I'm not crazy.
I have a disease.
It has a name.

Fibromyalgia.

They say not knowing is half the battle. I say the battle begins the moment you "know".

For more information, please visits http://www.fmaware.org