Alive

I sit in my bed this blustery January evening (Happy Birthday, Natalie Rose!), and feel a deeply-rooted awakening in a long-dead seed.  The 2.5 years of life that has passed since my last post has been laughably difficult.  I mean, really and truly Job-level suffering of a long cursed family, as my dearest love likes to say to make me feel better.  

I have lived thus far as a vulnerable, open, deeply feeling person who quickly hands over her heart and meets in the trenches of another's reality.   Jumping in with both feet has colored my life in ways beyond imagining, opening me to joys not found without vulnerable encounter with stranger and known alike.  It's a beautiful/exhausting way of living, bearing fruit both life-giving and dangerous. The life-giving bits should be fairly obvious:  never meeting a stranger, the exhilaration of a spontaneous adventure, being moved by a particularly beautiful work of art, music, sunset, cup of coffee.  The dangerous parts are harder to decipher, particularly to oneself:  taking on too much of the suffering around us, co-dependency, comparison, constant indecisiveness, FOMO, 

As days, months, years go by, the obstacles have tempered and refined my wild heart, giving it permission to run free within healthy boundaries and self-care.  My awesomtastic counselor talks of God's pruning work, trimming and bending us so that we might grow aright.  Pruning work is really.  not.  fun.  But, it's the only way in a world that would have us run over with bramble and thorn. (By the way, people, counselling is one of the BEST gifts you can give yourself!!  45 minutes at a time dedicated to getting to the bottom of things, problem-solving, emotional sustenance.  Take the time to date around, and when you find a good one, stick with them!)

Now is not the time for a litany of suffering, though that may come later.  I just write to remind myself I am alive.  Dark winter days invite delicious hibernation, but I must not get lost in it.  I find that the comfort of solitude is great, inviting introspection that must also be balanced with impromptu movie afternoon, or hours around a cozy fire with a soul friend. (Em, here's looking at you and our hygge-fest).  It's the hide-but-don't hide introverted extrovert in me that loves this time of year.

............................................................................................................

Because I write now as like a diary, expecting my words to be read but a few dear souls, I'm going to lay things out.

Things are changing.

Like humongo crazy long-awaited change.

It's hard, there's some serious grieving, but underneath it all:  a tiny ember of hope, a hope that has endured beyond understanding.

There are people in my life who don't understand, and who don't care to understand, what I'm going to share.  Some will read this and think I'm only focusing on the hard, the ugly, the painful.  But the fact that I am ALIVE is in itself a feat.  And, bless your dear heart for the skeptics out there, ain't nobody got time (or energy) to deal with haters, so move along mon cheri.   

    
Nothing like vintage GIF.  oxymoronic though it may be.

The last time I remember a day without debilitating pain was before I had mono at 16 years old.  Even then, I'd have the consistent knee and ankle pain, but after mono, I've walked almost 2 decades with unseen and disabling pain.  I wake up feeling as if my bones aren't in the right place.  One misstep, and my left hip audibly pops and sits awry for days. Stomach issues, migraines, endocrine funk, fertility and uterine puzzles, hives, slipping rib syndrome, PCOS, hypothyroidism, neuropothy, black-outs, tachycardia, temperature regulation, costochondritis,  anxiety, depression, pregnancy loss.

Sounds like I'm a hypochondriac, huh?

Unfortunately for so many, this is often the diagnosis, along with fibromyalgia, an umbrella explanation for unexplained constant pain. 

I've spent years slogging through cement, pretending like my body doesn't feel like I've been on the rack, smooshed back together and then on the rack again.

I've blamed my obesity for the nauseating pain, hating myself more and more.

I've questioned my reality, wondering if I truly was crazy.

I've cried---oh how I've cried---when trying to explain to loved ones who just don't believe me, who think I'm lazy or just making excuses.

Only by unfailing support of my husband who has never doubted me even when I doubted myself, and the incredible competency and brilliance of my doctor have I finally found an explanation, 

I have Ehlers-Danlos Syndrome, 
Postural Orthostatic Tachycardia Syndrome (POTS), and
 Mass Cell Activation Syndrome.


















Yes, it's a mouthful.  

Yes, they are REAL.

Yes, it's overwhelming.

I'll go into more detail as posts go on, details about the long road and mystifying timing of finally, finally, finally having someone say, "You're not crazy.  In fact, people like you are some of the toughest people on earth."  And my ever-loving, never-doubting husband yells, "Amen!"

PRAISE.  JESUS.

COMING SOON:

My first week of Gluten-Free living, and how Angie, Claire, and Simone have saved my sanity.

When best friends save your lives, again, and again, and again.

EDS and stupid human tricks.

Favorite media I'm consuming at a rapid rate.

Best Christmas present ever.