Coming back to life.

Wow.  Well.  It is hard for me to believe that the last piece I wrote was way back in May of 2018…and the last time I felt like myself was June 11, 2018. It’s been pretty quiet around here at The Gift of Moments…not because I haven’t been viewing every moment as a gift (some days this was easier than others) but because I was struck with a life-altering, mystery health condition and my brain was out of commission, making higher level thought and writing straight up impossible. This post will hopefully help explain where I’ve been, what I’ve been through and touch on some of the lessons I’ve learned (more to come on the many gems I’ve collected in this difficult season of my life in future posts). It has been quite a journey. I have long since cruised past the six month mark of what has been the most extended and most extreme experience of pain I have endured in my life.  While I still feel like it must somehow be time for Fourth of July fun or Labor Day lounging and that my Rip Van Winkle sense of time must just be a little off… it is clear that no, the holidays have all twinkled in and faded out, the Time Square ball has been counted down and long ago dropped and 2019 is already in full swing.  I missed the Christmas carols being sung. Thanksgiving has come and gone. The summer swim meets have already been swum. Vacations have been traveled and documented and enjoyed, without me.  

Silver linings?  There have absolutely been a few shimmery bright spots in all of this. In fact, the showering of love and support by our friends and family has been the most vibrantly brilliant part of all. Additionally, more recently, when my eyes could move again without pain, I was able to catch up on some quality Netflix TV series comedy (is that a silver lining?).  Our babysitting/social life/wine/travel/fun budget is…let’s just say we’ve saved quite a bit last year with me laying in bed, swapping out medical bills for Uber rides to meet friends.  Discovering and reaffirming relationships with friends brand new and beautifully old has been lovely and impactful. Having front row seats to a master class in pain and suffering, a class I did not sign up for, has certainly opened my eyes to so so much. Having fallen, many chose to come forward to share their own stories of sickness, affliction, or trauma in an effort to connect. Hearing about the pain of others, the hurt I never knew existed behind the smiles in some friends, the dark spots many people often chose to leave in the dark…. was illuminating. I learned many major life lessons. And also, while this was all incredibly difficult, I am lucky enough to have lived to tell my tale.  And.  There is an ending to this story.  These last two facts, in and of themselves, I do recognize, are tremendous gifts. 

Exhale. 

I wanted to write to you, first of all, as a bit of a love note, full of gratitude and deep appreciation, for the incredible outpouring of support and kindness many of you have shown to me, to my husband, and to my children over the last half of a year.  Your love came in a thousand different forms on a thousand different days and I hope you know that your texts and prayers and comments and cards and letters  and (apologetically unreturned) voicemails and flowers and meals and hugs and carpools and playdates and baked ziti and nights out for Pat and sleepovers for the kids and and and…. all of it, big and small, was wildly, greatly, profoundly noticed, felt in our hearts, and treasured. 

Second, I wanted to give you all what is hopefully the ending to this insane story that is, still shockingly to me, my life.  In November, during a weeklong stretch of feeling well, at a local fundraiser for our dear best friends and neighbors, I had the gift of seeing many, many faces that I had not laid eyes on since the springtime.  Many had been following along with my health on social media and they all had the same question for me: did they ever figure out the cause of my health drama?  And… truth be told, I really was waiting to share this because I wanted to make sure I had all the facts straight first.  But. Now we know.  And now I’m finally beginning to feel better.  So. Here’s the deal, guys.  Ultimately, it was not a tick-borne illness.  This whole cluster was not from a mosquito.  It was not viral meningitis or an autoimmune condition. I never had a neurotrophic virus that was attacking my brain. 

I had intracranial hypertension due to a build up of cerebral spinal fluid from the hormone levonorgestrel….from my Mirena IUD.  

In other words…. there was a tremendous buildup of pressure around my brain, that was set into motion from a perfect storm of events that I will dive into below. 

So when I kept saying that my head and spinal cord were lit up and that that I felt like my head was going to explode and my eyes were bulging out of my skull with every blood beat… that wasn’t so far off from what was actually happening inside my skull and vertebrae.

Unfortunately, this pain was all made worse due to the 4 week course of doxycycline I was put on when we thought I had a tick-borne illness.  Doxycycline can further elevate the pressure of your spinal fluid. It was like adding kerosene to a raging fire.  When the incredibly expansive testing that was done for me continued coming up with negative results but my symptoms persisted, my amazing husband did some medical sleuthing and asked specialist after specialist about my Mirena and whether it might be the cause of (or contributor to) my symptoms while I was being treated this summer…but no one at Penn thought that was possible. We eventually sought a second opinion when my crippling symptoms persisted without resolution, pain abounded, and all attempts to wean from prednisone failed, for month after month after month.  We had been assured by multiple brilliant doctors at Penn that I would just get better.  To give it time. That this unidentifiable “virus” would just go away.  We kept hoping in earnest that that would be the case, but ultimately, that did not happen. 

Enter: Dr. Olga Katz. Neurologist extraordinaire at Jefferson University. At our first meeting with her, without our suggesting it, just upon hearing my story and my symptoms, she asked about my birth control and within minutes, after months of wondering, research my husband had read supporting our theory in our back pockets, my diagnosis was confirmed and a treatment plan was immediately put in place.  This was not the first time she had seen a patient like me and it likely wouldn’t be the last. I had very intense, specific, strange eye pain that neither ophthalmologist nor neuro ophthalmologist could make heads or tails of. Now?  It makes perfect sense. My brain was under such extreme pressure that the tiny muscles that were tasked with moving my eyes to their furthest periphery in all directions were essentially, for lack of a better word, being squished. Wild. How thankful I am, truly, to be sitting here at this moment, looking at my computer and SEEING words…and the faces of my family…and the leaves through my window as they turned colors this fall.  Unfortunately, there are women of childbearing age who have a Mirena in place, and while a somewhat rare occurrence, go irreversibly blind in situations similar to mine.  This was confirmed again for us when we got a second opinion from another neuro ophthalmologist at Wills Eye. He said that he has seen this scenario play out before in women over the course of his 30 years of clinical experience. He said that women in my same situation, who are sensitive to hormone formulations, can have stories with disastrous endings.  Blindness. “It’s a miracle you can still see.” My mind is still only beginning to process all of this. He also noted, toward the end of our visit, that most of these women who are sensitive to estrogen or other hormonal contraceptives often have underlying hematologic issues that impact clotting which often sets this whole cascade into motion. Essentially a blockage (a small clot) can be the trigger for a major anatomical plumbing issue. The equation looks something like this:  a genetic mutation that increases the risk of clotting + the clotting risk inherent to hormonal contraceptives = a clot in the veins reabsorbing the spinal fluid -> a build up of spinal fluid —> intracranial hypertension and, in some cases, blindness. As a neuro ophthalmologist, he saw women who had these same issues, which caused something called pseudotumor, something I did not have because I did not have swelling or compression of the optic nerve or blindness…pure luck or by the grace of God….but for many women, though, that is the ending to their story. 

After some blood work was ordered by the neuro ophthalmologist, it was confirmed that I did indeed have a hematologic issue that we had never known about. It did help us make sense of the fact that I had a post partum hemorrhage after my first VBAC. I had poor healing after my wisdom teeth surgery. Some of this now clarifies some things for us. Our next step is to meet with a Jefferson hematologist in a few weeks to get his insight into how the compound heterozygous mutation of the MTHFR gene that I have may have played a role in the events of my brain.   

Ultimately, the care I have been receiving from my savior, the incredible Dr. Katz, has been beyond top notch.  I may or may not have told her that I loved her. (Translation: I definitely told her that I loved her). And it’s possible that, through tears of gratitude, I asked if I could hug her. (That definitely happened). She placed me on several neurological drugs both to decrease the pressure around my brain and to cover the persistent soul crushing headache I experienced for so many months. I continued high doses of oral steroids that I had been on since July and had failed weaning from more times than I can count. Additionally, for several weeks, I received mega doses of IV steroids. Those would simultaneously wear me out and bring me back to life. This experience has been exhausting and hellish and intense…and somehow beautiful in seeing the loveliness and generosity of humanity during the worst of it. (See silver linings as outlined above.)  

A few months ago, my hair began to fall out in handfuls and has continued to shed as part of a process called telogen effluvium (again, thank God for my dermatologist husband because I was straight up freaking out in that first shower with a mountain of my hair in my hands).  Evidently, when your body is so severely ill to the point that it needs to shut down accessory functions (i.e., the handling of hair cycles) in order to survive, it just holds its breath until you turn a corner (much akin to pregnancy….when you birth a baby, or in my case when there was an uptick in healing), three months later, you begin to shed.  And shed I am. It’s like my body finally exhaling after holding its breath for 6 months.  Holy smokes.  I have lost maybe a third of the hair on my head?  It’s a lovely look I’m rocking this winter ??‍♀️.  Sigh. Good thing this is superficial stuff and that none of it matters so deeply….but.  Holy heck.  This has been a ROAD.  

And this leads me to my third and final point: it is important to me that you all know that I am now doing okay.  I am working my way down off of the prednisone, as well as these heavy duty medications, many of which carry pretty scary and unpleasant side effects.  I’m already off one of them as of this past Friday, and I have a three week wean left in front of me for the final medication. It’s looking right now like I will be off all these medications by the end of January!

Truly, this journey… all of this has been so so eye opening.  Pun intended.  I have learned so many lessons and I have so very much to say and share.  Now that I’m writing again, I promise there will be much more to come.  But to say that I have a new perspective on, well, pretty much everything…is a dramatic understatement.  I was watching my life happen from outside the fishbowl.  Now, I feel like I have a new set of eyes, a fresh newly-not-under-pressure-brain, and hopeful hands with which to put my life back together piece by piece. I have made so many changes, but that is for another post, another time.  My main message to you now though, especially as we all shuffle, bleary-eyed, freezing cold, potentially over-committed and exhausted into the new year….. We all have the right to wellness.  We all have the right to peace.  We all have the right to live life on purpose, awake, aware, and as the captain of our own ships.  Truly, we don’t have to have our ships sunk completely like mine was to have the opportunity to rebuild our boats.  Even if you feel like you are drowning, whether you realize it or not, you have the power to reclaim your self.  Your time. Your finances. Your marriage. Your energy. Your body. Your family. Your relationships. Thankfully, we were surrounded by the most loving family and friends who kept our crazy ship afloat the last half a year….one of these months we will probably just sail right off into the sunset….right?! (Dear God, send us to an island PLEASE lol!!). No, like everyone else, no one knows what the heck is around the next corner… all we’ve got is right now.  I’ve felt good for a little over two weeks with only a few hiccup days…I still have some meds to wean off of.  Who knows what’s to come.  For me or for anyone else in the world.  It’s been a doozy of a year for a lot of people that are close to me and all I can say as we enter 2019 with open hearts and clear eyes…..no matter where you are, whether things are easy or hard right now… this too shall pass.   If you are hurting, physically in pain from an illness or injury, or emotionally from a loss or addiction or newfound sobriety or a financial hardship…or if you’re in a dark space because over the holidays you were missing someone who should have been sitting beside you…please know that I am thinking of you and praying for you.  If you’re in a patch of easy and life is joyful and gorgeous and smooth, hooray!  Own it. Savor it. Cling to those dear, rich moments.  Either way, everything will go.  It’s the only guarantee in life….nothing is permanent.  Just know that I’m wishing for you wellness. Wellness in the most holistic meaning of the word.  Life is far too short to worry about some of the things that used to consume my time or thoughts before I got sick.  If we’ve got our health, if we can sit up, breathe deep, smile at people who love us, and are blessed enough to be warm on a night like this one…we are lucky enough. All I know is that my thankful heart is overflowing with warmth and appreciation for every minute I’ve got.  Even the ones when I’m shouting to my kids to get spoonfuls of oatmeal into their distracted, talking mouths before the bus comes or the others when I am shivering leading the preschool-party-of-five-kids caravan across the busy parking lot and down the crowded school hallway… I know how much I wished I could be doing exactly those silly little mundane things when I was lost in my mattress for half a year.  Lucky us.  Whatever your mundane is, annoying or noisy or head-bangingly-repetitive or over-scheduled or rushed or exhausting or boring as it may be… know that there are people out there who would genuinely give *anything* to be in your shoes, even for a minute. I know I did. For months on end. We don’t have to appreciate every single moment…but awareness of our ability to have them is a solid first step.

It’s good to be back. Happy New Year! Xo