Take a moment and breathe in the fresh ocean air lifting off the South Coast of Antigua. Let yourself be transported from the ordinary to a space without stress or pain. Tuck in into your heart and visit it when you need a break.
A Migraine Royalty Adventure Intro.
So I have decided to contact the chaps over at the White House. Obama seems like a pretty chill president. Surely they will be happy to pass on the contact information for the makers of Air Force One. Oh yes. Boeing. See that wasn’t too hard. What..? Whoa. Whoa. Whoa. Try and hold your questions for the time being. I’ll get them all answered, I promise.
Our Royal Family has a pretty challenging time getting together. Our quirky DNA manifests into all sorts of autoimmune and central nervous system diseases and disorders. Migraine Royalty usually is close cousin with *Interstitial Cystitis Royalty , *RA Royalty or a second cousin (once removed) to *Lupus Royalty. We’re one of those families. Not only are we spread across continents and countries but our maladies make travel taxing and sometimes impossible. Plus there are the #Royal pets. We would never forget those treasures.
The technological age does have it’s charms. I’ve actually found #Twitter to be among them. This is a surprising confession for a woman who loves the feeling of paper underneath an inked pen. However, there are those days when Twitter will not due. When hugs must be had, cupcakes must be nibbled and champagne must be sipped. So those days I occasionally drag out the invisible jet. I get it all gussied up and set about picking up all you lovely #Royals from around the globe.
We have amazing adventures. More are yet to come.
Nothing peps up a group of girls like downing a few faux mojitos infused with oxygen while joining the Mile-High Pedicure Club. On our last trip we stopped off in T.O. to pick up Dean and Dan the oh so fabulous designers that make up the label Dsquared. It was an absolute riot to have them custom design us loungewear for our cupcake affair. Talk about feeling like a queen (and the little pet outfits…come on..to die for) !
Really, it was a most perfect evening.
Nothing is free, though somehow it is easier to pay the piper with a smile plastered collectively over all our faces.
Here’s the thing. Our #RoyalFamily is growing. Everyday.
So many lovely people to meet and connect with.
I was out on the invisible jet just the other day with a contractor, discussing the addition of a Candy Bar counter. It would cater to the joys of all things sweet, salty, sour, chocolatey, crunchy and randomly delicious. Once discussion began about a pharmacy and an animal ark (kennel) we swiftly realized room was running out.
That just will not due.
Since I am bringing on a whole new flight crew of male nurses, (which, trust me is a story all in its own right,) I knew we might as well get a bigger better, invisible plane.
I’ve done some hunting around and here is what I have found for us.
Firstly, Boeing is the way to go. Presidents and royalty alike find them suitable, so that is a good start. The newest line of 787s have special features to accommodate fabulous people with mobility, sensory and cognitive disabilities. For example the bathroom includes a movable wall that allows two separate lavatories to become one large wheelchair accessible facility. Pretty cool no? The bells and whistles of air filtration, particulate reduction, and specialized lighting go on to amaze. And that is before we talk about how to trick it out. Nothing is too good for my family.
We can pop over from New York City to Hong Kong at a cruising speed of mach 0.85. All while not having to notice the new noise reducing features.
Our fuel economy is improved 20% over the 747 which I had been considering. All this adds up to a sale: I am sold. Besides what is a few billion dollars between #Royals?
I’m pondering a series of Royal C & C Parties (Cupcake & Champagne) in extravagant locations. The new invisible jet won’t be ready for a few months but the planning starts now. I can surprise you all with adventures or you can weigh in and we’ll go from there. The gentlemen who will be working with us as crew/nurses/security are an absolute riot and will be helping set up all our excursions. I can’t wait for you to meet them.
In the interim, I think we may have one more spontaneous cupcake trip due us, so we may have to head to Madagascar to stare at the stars and demolish some delectables. Are you ready to climb aboard?
P.S. A little housekeeping:
Just a gentle reminder Kay, Isabelle and Felix, as hilarious as the Game of Thrones style whip cream battles are, I think we may have to retire them as a way of settling arguments. That stuff takes forever to get out of the carpet (and it starts to smell funny). I’m going to keep a steady supply of crazy string onboard from here on out instead. It’s far more civilized and should still do the trick ;) Also, Lana, Lisa, Elaine, Sharron and Melissa, you left your crowns in the overhead storage compartments. I shined them up and they are waiting for you. Let me know if you want them Fed-X’d. Anybody missing any pet toys?
Don't forget to leave me a note in the comment's and we"ll make sure you get a shout out in the next edition!
Of course.. you will remember that are you beloved and you are nobly born.
Above all else, you belong.
Congrats on following the asterisk all the way down here.. it means *not literally.
In a world where modern medicine has been as yet unable to reverse the ills of aging and disease, we are still bound to bodies that suffer. #ChronicLife tends to be rife with medications and side effects, relapses and remissions and talk of new treatments. In all the treatments I have tried and the painkillers that have been pushed, the strongest medicine I have found has come in the form of my friends. Those who encourage me when I forget myself. People who offer me a meal when I can't think to cook. Amazing friends who sit with me and say nothing, or everything but don't try to fix me. These folks let me hold the light for them, we play tag in generosity, kindness, patience and joy. They continue to be my best teachers. It is to each of you that I bow daily. Many of you I have not met in person. But I hope to someday. (Invisible Jet willing)
Migraine Royalty isn't some shtick I dreamt up. It is an understanding that we are all connected. Many of us through pain and similar experiences. We are both teachers and students. We have deep understanding to offer one another. Friendship, kindness, generosity, understanding, these can be transformative forces in a person's life. I am ongoingly humbled by the strength I witness in the people I meet through Migraine Royalty. I am blessed by your letters and always cherish your stories. Thank you for being here and thank you for being part of making people well. We are creating something pretty special. Where we take it is up to us. Even on your worst days, you can remember: You are nobly born and you belong. We #Royals are always here for you.
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I do not think any of us doubt that we are blessed. Truly I am.
However there is no denying that this life, the #ChronicLife is different than my previous existence. It would be a lie to say it is something I would choose for myself. Though I have grown a great deal as a person through my experiences of pain and invisible illness.
The diagnostic experience is one I like to refer to as "Hurry up and Wait". For months the anticipation grows as we wait for answers from one specialist or another. The appointment comes but instead of answers, more questions are raised.
Tests scheduled for dates multiple moons away.
Follow ups with results further off still.
"Hurry up and wait".
Patience is a central life lesson.
The living and the waiting. The hoping and the treatments. The flares and the remissions. The pain and it's aftermath. We carry these things with us . It can take up a fair amount of our daily life.
For my girlfriends who don't quite understand, I liken it to a new mother on Facebook. New moms are up all night, have a strange new figure, a sudden fascination with bodily functions and a new found willingness to discuss them.
Migraine, Lupus, Fibromyalgia, and the spectrum of invisible illnesses can be just as all consuming, though we may post fewer pictures on Facebook than the average new mom.
It may indeed be far more glamorous to throw oneself in front of a cause than to experience chronic illness day by day. I grew up beside someone with Chronic Persistent Migraine never fully grasping their plight until parts of it became my own. I'm not advocating trying to force understanding out of others, but acknowledgement out of self. #Royals don't walk an easy path but it is a valuable one.
While I have watched my friends explore the globe, I explored interior worlds.
Self-knowledge is the beginning of all true understanding. It is the root of compassion, empathy and gentleness. So while we may not have asked for the crowns we wear, we can wear them well.
#Royals have taught me this over the years.
When our crowns feel too heavy to bear, we have a huge family to lean on.
Thus the reason I eternally remind you that you belong and we are always here for you.
It's one of the biggest benefits of belonging to a
something larger than yourself.
You are never alone.
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