Medical Roller Coaster 2015

I haven’t written in… months.   I had that hypoglycemia incident in, what? May? And haven’t had the energy, the ambition or the give a dang to write about the h-e-double hockey sticks this summer and fall have been.  But seeing as writing about the here and now would be completely out of context, I guess it’s about time that I sum up the medical turmoil the family has faced since June.  

At the beginning of the summer, I finally got around to identifying a general practitioner that HB and I are comfortable working with and feel we can trust.  Having spent the last four years relying on specialists and the occasional trip to urgent care, we’ve been lacking a general continuity of care for all medical issues non-chronic and/or life threatening.  So finally getting around to scheduling a physical, I squeezed an appointment onto the calendar between the end of GW’s school year and the start of my summer programming  in Vermont for my master’s degree. 

Explaining that I’d experienced an unexplainable (aka not blood sugar related) fall over Memorial Day weekend, the doctor ran several tests to establish a baseline of care, including a MRI to rule out Multiple Sclerosis.  Feeling fairly confident that the MRI would be lesion free, I began to mentally prepare myself to get word that I’ve developed Celiacs Disease or Hashimotos Disease or some other diabetes-knock-on illness that is likely for type ones.  So when the phone eventually rang, I took the news with relative detachment: 

 “Your lab results are all clear and your MRI showed no signs of MS,” he began.  “However, it does show a borderline Chiari type 1 Malformation.” 

“Oh, okay,” I responded.

My MRI image from June 2015: The almost circle
like portion of the cerebellum near the occipital
bone should be above, not below, the skull.

Shocked that I not only knew what Chiari is, but how to pronounce it (kee-AH-ree), he helped me quickly set up follow up testing to learn the extent of my condition.  Now, for those unfamiliar with this, Chiari is a brain malformation that occurs for any number of reasons but essentially boils down a too big brain in a too small of a skull with a portion of the brain known as the cerebellar tonsils being displaced into your spinal canal.  This pressure and crowding of your brain can cause things like neck pain, numbness, dizziness, balance issues and a number of other generic symptoms that are easy to misdiagnose which, in my case, is likely why we never caught it before.  

So following that first brain MRI, we crammed three more MRIs into the next week and scheduled a consultation with a neurosurgeon at the Johns Hopkins Medical Center in Baltimore for immediately after my return from Vermont in August.  Feeling comfortable that my 5 mm profusion hadn’t caused problems in my life thus far, HB and I decided continuing on with life as if it were normal was the only reasonable thing to do - so off the three kids, my Mother and I went for six weeks of study and play in the Green Mountains.  

Well, just days into our time in Vermont, things started to go south.  Electing to take the summer off of school and just enjoy the children and the scenery for the blessings they are, I went up to campus to talk with the program director about withdrawing from my scheduled classes.  And that’s when it started…  I remember walking into the meeting and sitting across from this woman I’m quite comfortable with and floundering with my responses to her reasonably straight forward questions.  I’d think of an answer and by the time my brain told my mouth what to say, it was gone… and then I was gone.  The next four hours are snap shot images of my surroundings but otherwise they aren’t there.  I don’t remember leaving the meeting … I know I got into my car to drive home but couldn’t figure out how to buckle my seatbelt or where to put the keys (thank God my Mom was with me) … I don’t remember picking the kids up from summer camp … I remember GW and GV eating yogurt at the table and wondering whose kids they were … I remember my Mom saying “you’re scaring me” when I refused to have anything to do with the baby … but none of that flowed in any context… None of it made sense…  It just wasn’t me. 

Toward the end of that time frame, the phone rang and I was vaguely aware of my Mom talking on the phone with someone about going to the hospital.  Moving around me with a sense of purpose, my Mom handed me the phone as she began putting things into bag and shoes onto the kids.  

“How’d your meeting go?” The voice on the phone asked.  It was HB. 

“I don’t know,” I replied.  

“What do you mean ‘you don’t know?’ Did you see the director?”

“I don’t know.” 

“Put your Mom back on the phone,” he instructed. 

Within moments she had hung up and was shooing the four of us kids, grand and otherwise, out into the car.  Slowly gaining awareness of what was happening around me, I sent a friend a few concerned, jumbled text messages as we pulled into the rural hospital’s ER parking lot.  By the time we’d completed registration, triage and I was sitting on a gurney in front of the ER’s trauma doctor I was 100% back in control of my faculties and thoroughly freaked by the situation.  

Being a small, local facility this particular hospital, unfortunately, sees more broken bones from ski accidents than they do complex neurological cases so the doctor was completely baffled as to what he should do.  Calling over to the Dartmouth University Hospital, he was given general instructions to discharge me and send me to see them the following week.  Not comfortable doing absolutely nothing, he ran a head CT to attempt to rule out a stroke, but without concrete evidence he eventually did as the Dartmouth neurologist instructed and we departed.

You can imagine how uncomfortable we all were.  I mean, here I am with a new Chiari diagnosis and I’m coming out of a complete altered personality/blackout phase where I didn’t recognize my own children, the doctors are throwing around words like stroke/seizure/TIA, my husband is several states away, my Mom is caring for multiple scared children and I am just supposed to follow up next week?  I don’t think so.  Within the next two days, HB flew up to Vermont, helped us pack the house and drove us back to Virginia where immediate appointments waited for me at our new GP’s office and with the specialists at Johns Hopkins (yes, they made time for me on short turn around - seriously impressive!).  

So over the course of July and August we ran tests on my nervous system, my cardiovascular system and circulation system to see if we could pin point what exactly happened.  Determining that my Chiari was not responsible for the altered mental state and was not significant enough to worry about let alone warrant surgical treatment, the doctors biopsied four thyroid nodules that we found on the MRI (non-malignant, thank God), they measured the calcification in my carotid artery to see if second hand smoke may be to blame (more than the average person, but within age appropriate limits, so non-applicable), they ran EMGs and EEGs to track my nerve-muscle communication and brain wave function (all normal) and Lord knows how many blood tests.  By late August, I’d begun to feel like a human pincushion.  But, fortunately, I started to get solid answers from one doctor in particular at Hopkins who analyzed my symptoms, my medical history and my frequent headaches and concluded that I am suffering from complex migraines.  

Stating that complex migraines differ from the common understanding of a migraine as a horrifically bad headache, the doctor explained that what I have can cause speech disturbances, motor impairments, significant confusion, visual interruptions, muscular weakness, nausea and any number of additional symptoms that none of us want to endure and I have been struggling with.  Arguing that this condition is more concerning to him than Chiari due to the concomitant accidents complex migraines can cause - again, thank God my Mom was there to drive my car!! - he decided that getting them under control through the prescription medication is a top priority.  So at three months into treatment with venlafaxine, things are looking promising.  I have had “moderate” headaches, but none have been severe enough to warrant intervention or caused significant impairments (knock on wood).  The doctor has high hopes that he’ll be able to further reduce my symptoms with a higher dose of this medication once I stop nursing next year, but that remains to be seen.  

I guess, at this point, I am feeling comfortable and confident enough about the care I am receiving to write about it and face the future with more certainty than I did back in June.  Back then I was terrified about the idea of brain surgery or the effect a serious stroke would have on my ability to take care of my children, or the obligation it’d place on them to take care of me, but way somehow opened and things don’t seem quite as dire as they did.  Obviously I am still nervous about the worst possibilities my body could have in store, but I’m alive and more or less healthy, the kids and HB are alive and more or less healthy so what more can I really ask for?  God delivered and, for that, I am truly grateful. 

I know I’ve missed a lot of details in summing up this medical roller coaster in a singular post and, kids forgive me, I’ve lost so many sweet, blog worthy family moments in the noise of it all, but that’s where we’re at and what we have to cope with.  Starting again is always painful - in writing, in running, in whatever - so the bandaid is off and here we go again.  

See you soon. xx

Awe-mused.

For a myriad of reasons, today I've felt completely floored by the world around me.  On one hand knocked down by my diabetes and on the other hand blown over by the beauty of Vermont, it seems like a good night to just sit down and possibly grab a glass of wine before I fall over.  Course too many glasses of wine and I'll fall over anyway, but that is easily avoidable.

So I went for a run this evening and, instead of making it back to the house in a blaze of "that was easy" glory, I had to cut the run a half mile short.  To switch things up, I decided not to take my usual town road route which begins down hill and ends on a grueling uphill climb and instead went up the mountain on a trail that'd starts at the end of the driveway.  Like all of my runs, the first mile was painfully tedious and the second mile began to loosen me up, but unlike the rest of my runs the third mile went down hill in a bad way.  The trees next to me began to feel like they were encroaching the trail, the path in front of me started oscillating and my head seemed to be swimming with spots similar to an optical migraine. No longer confident on my feet but thoroughly aware of my distance from home and my isolated location, I walked the remaining 2640 feet with a sincere hope I'd make it back with no more issues than I already had.

Upon getting to the house and flopping into a chair I checked my blood sugar.  I'd dropped to 41 mg/dL -- no wonder I felt off.   I thought my blood sugar was high enough before the run to not require more mid-way, but I can only thank God that my stupid assumption didn't result in anything more unsettling than the "what ifs" and "could haves" that are gripping me right now.  And while I hate the way my head feels when I have hypoglycemia, the dizziness that resulted from todays run and bound my butt to that chair for a good 40 minutes was punishment enough for me to plan better for next time.

While that spell took a bit to recover from, I found myself back in that same chair again after dinner in what I would consider a greater sense of stupor than earlier in the day.  Having corrected my glucose and eaten a full dinner, this second turn can only be associated with the emotional and mental shock that comes with having "old souled" children. Let me explain what happened:

As is usual post-supper, being the quintessential lover of dirt and all things nature that she is, my Mom took her nightly stroll through the property to appreciate the greens, browns and otherwise of the evening.  While quite picturesque on any given day, the John Constable clouds and amber glow of my favorite kind of mid-summer sunset of this particular occasion motivated her to take GV along just in case - given the Hollywood perfection of it all - Matthew Macfadyen were to come through the brush as Mr. Darcy professing his undying love to Miss Bennett.  The trees were glowing, sky was radiant and every particle of the world felt magically charged as if freshly formed by the hand of God.

Walking first from the kitchen porch down the narrow walkway past the nightshade bush, they turned down the hill and followed the lane past a very tall, likely very old sugar maple tree.  With several low hanging branches and a rope swing to rest upon, my Mom stopped to admire the essence of happiness the twinkling fireflies and rustling leaves caused just above their heads.  Comfortably enjoying the secure embrace of her Grandmother's arms, GV had until this point been quietly watching the dogs roam the grass in front of the barn, the swooping birds singing their evening recounts of the day, the small garter snake returning to its home amidst the raspberry patch and the silver wisp of temptation blowing across Grandmama's forehead.  But, even with life's distractions continuing around her per normal, something amid the stillness below that maple tree took hold of her attention... it was in that moment that with exacting deliberation that she reached for the wavering colors of the sunset as if to embrace them as a familiar comfort.  The way my Mother reported it was  that "without a doubt, if I hadn't been holding onto that child she would have leapt into the awe and floated away."

Now perhaps I give my seven month old more credit than due, but I cannot help but wonder what she knew about the evening that we did not? What angel did she see or greater-than-self connection did she make that we as adults have closed our minds to?  I know my Mom and I fully appreciated the glorious evening and the plum dumb luck that it is our good fortune to enjoy it (sans-hypoglycemia), but it was something beyond appreciation that GV expressed - something I am not sure there's an appropriate word for in our language, let alone my vocabulary...

And so I am sitting here stupefied.  I find myself swimming in thoughts and perhaps just as jumbled as I was earlier in the day.  I rarely take the time and capacity to register the world around me beyond the peripheral and my kids seem to display the ability in spades. I mean just yesterday GV discovered the second hand on the wall clock and seemingly understood the passing of the quantifiable with every tick... outside of a foot race, I cannot even remember the last time that an individual second as opposed to an entire minute was directly relevant to my conscientious thought.  It must be for reasons like this that so many of great writers took to these mountains in search of their muse and why some,  Frost and Thoreau for example, found it.

With that, I think I'll continue to bemuse myself and have that glass of wine after all.

Rugged Woman

For whatever reason, as a child I developed a habit of cleaning whenever I got stressed and that quirk, for better or worse, remains today.  I guess it all began with a desperate attempt to put some aspect of life in order when all else was out of hand, but now it's almost a cathartic distraction from whatever might be weighing me down.  Typically this means pulling out my magical Dyson vacuum cleaner, scrubbing the kitchen floors or sorting a large pile of donations for Salvation Army or Goodwill, but today was different; nothing short of renovation would do.

The last couple months have been simply overwhelming.  HB and I - somewhat randomly - decided to go house hunting and wound up purchasing a new home for our family in Virginia just two days before driving to Vermont.  Of course this purchase meant we needed to sell our current VA home and, much to my ignorant surprise, that meant so much more stress than any other simple ill timed move we've  done previously due to the necessity of showing the house...  Seriously, you try packing with two dogs, two kids and potential buyers under foot! Agh, what a nightmare!

Then, of course, we had the necessary shift in zip code for my six weeks of school in Vermont.  While this year our housing choice is far more stable (perhaps an ironic word) than either of the rental properties we experienced last year, this house of ours is 160 years old and, by and large, original.  So on one hand this means immense charm and fascinating history, the livable reality is that the word "project" thoroughly summarizes every inch of the place.

Thus, combining all of this and coming home to find an unfortunate oops of dog mess on the floor, I came to realize that no amount of windex or laundry folding would cut the stain of my stress.  Grabbing the hammer and handing my Mom a crow bar, I demolished several old, rotten shelving units from our rubble-floored basement and set her to the task of removing what we'd rather not clean: the carpet.

The thing about this old house is that somewhere along the line (likely in the unpropitious decades of decorating that were the 1950s -1970s) someone made choices to superficially add to the house things like a new ceiling here or a new carpet there without much effort.  Unfortunately, this means all of the completed "upgrades" weren't done well, but fortunately, this also means that most of the original house is still intact - including the random plank wood flooring!!  Talk about a best case scenario find! It's going to need a bit of restoration work (like everything else...), but that's for another time and another blog post...

Anyway, so with a gigantic roll of carpet, a disgusting pile of former shelving turned rubble and an old smelly couch thrown in for good measure, we call the amazingly accommodating local go-to hauler guy to arrange for a pick up.  Thinking that our front lawn would simply just need to look like some back woods place in Appalachia for the time being, I was blown away when he asked if I could give him a half hour before showing up... same day service? Who knew that still existed?! Sweet!

So thirty minutes go by and here comes LW with his huge flat bed truck.  Having exhausted herself with the crowbar and been unceremoniously handed a now wide awake baby, Grandmama supervised our efforts to toss the trash.  Sharing the load between us, LW and I tossed the bulk of the refuse over our shoulders into the bed of the truck.

Watching me hop up and back down with loads of rotten wood, LW turns to my Mom and says: "she's some sort of rugged woman, isn't she?"

To which she confidently replies, "Colorado women are made of stout stuff!"

Now, you might be wondering at this point what the heck this long rambling blog post about cleaning and stress and carpets has to do with diabetes?  Well, when this local Vermonter who has a) weathered a many frozen winter here and b) clearly worked honestly and hard his whole life bothered to pay me the compliment of being "rugged" my heart sang.

A lot has changed in my life since my diagnosis and I'd be lying if I said the self-pitying thought of being "sickly" hadn't crossed my mind a time or two, but today was like before.  I didn't look weak today.  I didn't appear diseased today.  I wasn't stuck sitting some place waiting for my blood glucose to stabilize today.  I was just as tough as ever and that, my friends, was way more cathartic than I could have asked for.  

Take that stress.  Take that diabetes.  Today, you don't get to win.

Let Marathon Training Begin!

Geography lesson: this is Vermont,
NOT Idaho.

So this past Saturday, after an 11 hour car ride in which we sang Jingle Bells 3,026 times, stopped for coffee 5 times and made word games of town names at least 17 times (seriously PA, "Lackawanna"?!), we made it up to Vermont in one piece.  GW was a great sport about it, like usual, and I am pretty sure GV would never like to see her car seat again... too bad for her we need to drive back to Virginia in August!  Never the less, we made it here and - given our immense to do list of house projects, course work and marathon training - hit the ground running. Literally.

With one week to go before our no-sh*t 16 week training program begins, I decided to take the first opportunity I had to get a little jog in.  Figuring that although there are some killer trails to run around Bread Loaf Mountain, being an unaccompanied diabetic I probably ought to stick to something "trafficked" (this is Vermont after all and far less populated than Virginia) just in case the worst happens and I pass out... because, face it, I'd rather have some random Subaru driving stranger find me than an opportunistic cougar!  So opting to run down Vermont Route 125, at high noon I strike out to finish the 3.8 miles from my campus to our place.

Talk about stupid.

Between the midday heat emanating from not only the golden orb directly overhead but the black, hot pavement beneath my feet, the intense humidity and the elevation change from 59 feet back in VA to 1,430 feet in VT, I was a pathetic pile of sweaty mush by the time I actually made it back to the house. For those of you who know that I'm from Colorado and that my home town is at 5,003 feet, this post is probably a gross disappointment, but having last lived in the Centennial State in 2007 I can honestly say that East Coast humidity felt more natural to me today than the slight change in elevation!

The only saving grace for this run - beyond having gone out for it at all - is that I at least made the correct decision to start my pre-training-training going down hill rather than making a round trip run or a one way trip up the mountain.  I think my future runs need to either be much earlier in the day or (prepare for immense vexation due to the gorgeous natural playground I'm in) on a treadmill...  I mean, seriously, I can't afford to fall behind on the 16 week schedule without running the avoidable risk of under training and injury.  Maybe when I get my feet back under me I'll attempt to hit the pavement again?  Or better yet, when HB comes to visit (for he couldn't come with... so sad), actually check out the Green Mountain National Forest trails that start just feet from the front door.

Sigh...

Whatever, I went running.  All for now.