What is your side effect story.. ?Read More
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There's no one to blame but blame itself. It's a migraine not a murder mystery. -H RoseRead More
Today, I am like Bjork.. "I am a grateful grapefruit". I could slip in a Topiramate/Topamax joke here. Something about how you shouldn't judge a grapefruit by it's peel, I'm not a cannibal, I'm not even allowed to look at other grapefruits sideways... and shame on you for thinking otherwise. But you know, not everyone has had to give up grapefruit juice in the name of Topiramate. It's kinda playing to a niche demographic. So instead I'll just say, hey..remember that swan dress Bjork wore ..that was something eh? Sometimes working with friends has interesting results. I kinda liked it.
This past week or two has been rather physically challenging. If it were not for my mindfulness meditation, breathing practices and audio books, challenging would not be the word. ;) I find that I can push through the first week without too much trouble. Folks will ask how I am doing, and instead of speaking from my pain, I'll often say: I'm happy in heart. The people closest to me know what that means. It hurts but it hasn't got me in a headlock. However, two weeks in bed with migraines and various system flares will mean the laundry has gotten away from me, the dishes are stacked, the floors need tending and my cupboards have only a few protein drinks to call friends. The "Shoulds" are multiplying like rabbits around my bed and all I can do is sick the cats on them. Survival mode doesn't have room for much else. It can feel like a maze of stairs, all descending away from the world.
And yet there is this amazing feeling I carry around in my heart. A deep seeded sense of being understood and heard. It is a healing balm. I am reminded of the Sufi mystic Rumi and one of his writings.
Why the Prophets are Human
A woman came to Ali, "My baby has crawled out
on the roof near the water drain, where I cannot go.
He won't listen to me. I talk to him,
but he doesn't understand language.
I make gestures. I show him my breast,
but he turns away. What can I do?"
"Take another baby his age
up to the roof."
The woman did so, and her child saw his friend
and crawled away from the edge.
The prophets are human for this reason,
that we may see them and delight
in the friendly presence
and crawl away from the downspout.
(excerpt from Feeling the Shoulder of the Lion, Poetry and Teaching Stories of Rumi, versions by Coleman Barks)
I have been witnessing an outpouring of support within our community, not only from one #Royal to another, but you Lovelies have been supporting me in really powerful ways too. Launching #RoyalJet missions and #ChronicLife Moments when I am having a rest day... (these things make my heart soar,) and sharing more of yourself with us in so many different ways. These friendships are valuable to me in a very authentic and palpable way. Thank you for being here. You'll never fully know the impact you can have on another persons life. The notes I receive, continue to humble me.
There is something so powerful in knowing that another has been where you are- right now- and they have gotten through it. Especially with chronic illness because our experience can become so extended that we forget what pain-free feels like, or sleep, or a settled stomach, and we need to be in touch with people in all stages of the cycle. It gives up hope, keeps us grounded and helps us value our good days. Maybe best of all, it eats the beast: Isolation. The stairs lead up from there.
If you ever want to contribute, have an idea , or would like to find out if there are ways to get involved, drop us a note.. we'd love to chat with you.
A very big thank you, to my amazing female friends & Royals. I'm truly a grateful grapefruit.
I've made a decision recently.
While I've hoped to draw enough income to support myself fully from other aspects of my writing without having to put ads on my site, today I am not there yet. However, all the financial responsibilities of my #ChronicLife are. Rent, utilities, treatments, prescriptions, protein shakes and all those other glamorous indulgences that us #Spoonies thrive on ;)
I have decided to put custom ads from Amazon here and there with personal recommendations. My micro loft is full of twinkling lights, wonderful books and great little life hacks, I'm happy to share and you: go ahead and chuckle, ignore or indulge yourself as you naturally would. The ads are simply an aside.
My purpose continues to be to connect, to inspire and to tug on the threads that bind us all together. The migraine, autoimmune and CNS (Central Nervous System) diseases have created a unique community. When isolated we feel lost to the world. It was Alphonse de Lamartine who noted: Sometimes, only one person is missing, and the whole world seems depopulated. Don't you ever feel like part of that depopulation? I know I do. However, the more connections I make with others who have won their own genetic lottery, the more populated the world feels, ... and with peeps just like me. To shout out into the darkness and hear a resounding "ME TOO" come back is one of the best feelings in the world.
Writing is a passion of mine. I love to do it. Between migraines and brain fog, I wait out the words like a Medium must her spirits. Although I have less need for a crystal ball or hair scarves. Granted, they do exude a charm all their own. Maybe I will try adding those to my environment next time writing turns especially laborious. All joking aside, I love pouring myself into stories and reflections for you to read. My hope is that you enjoy the reading half as much as I do the writing. Your constant notes and letters shape my writing and they influence me greatly. Please keep up the great work! I feel like I am on purpose with Migraine Royalty, in that I am in touch with the fabric of our wonderful community.. Thank you for understanding that needing to keep the lights on does not detract from my commitment to provide great content.
We have lots of adventures coming up, from our zen #ChronicLife Moments, #Inspire :#Quotes, explorations on #LightSensitive options to goodie bags from out #RoyalJet Flight Plans. We are even considering doing a column on the perils of #ChronicLife Dating and furthering our indulgences into #FunFinds. We love your ideas, so feel free to send yours to us, or comment below!
As always, we are so glad to have you as part of our family. You are never alone because no matter the ailment or illness, you belong. And remember.. like all royals, you are nobly born. So wear that crown proudly.
*should you find the ads intrusive, please drop me a note. I am brand new at this and it will likely take a moment to get it dialed in.
Often the #ChronicLife leaves us feeling like vampires.
Between easily disturbed sleep cycles. significant light sensitivity and a propensity to paleness it's not too hard to see why the vampire jokes are an easy laugh.
Finding beautiful fixtures with luminous soft light gives me great joy. Today we look at the artistic expressions of Linlin and Pierre-Yves. They have traveled the world extensively, though it is easy to see the ambiance of their home, Paris throughout their collected works. For me, their 3D printed Elephant Animal-Lace is as close to trophy hunting as I would ever want to get.
It as as beautiful off as it is enchanting on.
Here are a few other designs from that collection to peruse.
While this collection lives in my wish category for the time being, it also fires up my imagination and breathes life into the dim recesses of my light sensitive centers.
I hope these wild things bring you a little whimsy
and softly illuminate the corners of your mind.
Wishing you a very peaceful day.
Remember that you are never alone
because you belong, you are family and
you are nobly born.
Come find us on Twitter anytime @MigraineRoyalty
or leave us a comment below
This moment of ease was brought to you by the mangroves of not-so-far off places. Where do you want to be carried off to? Perhaps this is the perfect time to simply float around, picking animals shapes out of the clouds. Or is it time to try out that new parasol while your guide points out the secrets the rain forest, hidden in plain sight?
Wherever our #ChronicLife Moment takes you, indulge yourself and breathe deeper into your sense of ease. As a great mentor always reminded me
what we water is what
I always encourage you to feed your
sense of ease.