Monday, January 16, 2017


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.

ehlers-danlos-syndrome-causes.png (420×294)

wpid-1655924_284533608363564_239963170_n1.jpg (960×960)

Postural-Orthostatic-Tachycardia-Syndrome.jpg (720×404)

symptomsofmastcell.png (685×306)

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!"



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.


  1. Wow, Danielle. I think I'm your first customer. :) It's great to hear your voice again and although I'm so sorry to hear you've been on a rough journey I'm glad you are figuring out this huge piece. I hope that you can find healing and relief from this-- it sounds harrowing. I've been thinking about that saying that you sometimes see on etsy prints, etc: "Let her sleep, for when she wakes, she will move mountains." Seems like a good Danielle slogan too. xoxo

  2. Julia, I miss your sweet kindness and your lovely way of things!!!! What I would give for a hot cup of tea and sit-down with you. I think I need to get a t-shirt with that, because sleepers will soon awake! 😁 Love to you all.

  3. Wow. So glad to hear you have a diagnosis!! I am very curious about treatment, will taking gelatin help at all?

    1. Thank you, Beth!

      There's TONS of dietary and supplemental stuff going on. GF, low sugar, no artificial dyes/sweeteners, chelated magnesium, high dose Vit. B6, B12, C, quernitin. Bone broth will be huge. When I next see my specialist (not until June!!!), I'm going to ask about gelatin, but it certainly won't hurt!

      In the next weeks, I'm going to share a bunch of what I've learned. It's fascinating!

  4. This was a very beautiful, healthy, productive, life-giving way to deal with all the feels. So proud of all you are doing. You can do hard things and you are worth it! ❤️

    1. Love you, Ang. You're a huge part of my support system, and I'm so glad you tolerate all the pictures and questions of my baby steps.

  5. What an inspiration--and how great that you have a good support system. So glad you have a diagnosis to be able to know that you are not crazy and that there might be something you can do to help yourself! Gluten free is not easy--but I hope it helps! You can do this!

    1. Thank you so much! I've survived my first week and, no matter what people say, detoxing from wheat IS A THING!! I've been an emotional rollercoaster, exhausted, even more sore. BUT, this morning as I walked around the farmer's market, I got all the way around without my leg going numb or getting my normal sciatica shocks! A small thing it seems, and even if it's mind over matter, I'll take it!!

  6. I am stunned to learn you have been going through all this because when I think of you, I remember gigantic contagious smiles, laughter, your lovable virtue of including everyone in all activities, and your overall adorableness. Tough isn't the word for it. I'm thinking "Saint". BIG hugs, Danielle!! Florence

    1. Oh Flo, you make me cry!! I think those who've hurt the most have a deep well of joy too! Hugs from IN!!

  7. Holy smokes, Danielle! First, please allow me to say that I know what you mean about Jabine-my-family-is-cursed types of suffering. We have endured the same, and you are right about the little light of hope that cannot be extinguished.

    Second, I am thrilled to hear about your diagnoses. God bless you as you seek treatment and help.

    1. Katie, you certainly a kindred wearied traveler! Thank you so much for your prayers, as they sustain us in ways seen and unseen. Sending love to TX!

  8. Danielle! Praise Jesus for this news and for your crazy vintage GIFs. ��I mean, so much knowledge, growth, love, joy in the midst of your suffering. I am proud of you. I can't wait to see/ hear/ read more about your journey. I miss your gorgeous soft face!