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It is that time of year when all good, reflective, self-actualized people deeply and with great intention reflect on the old in preparation to ring in the new—and if for no other reason than having really bad FOMO, I find myself, today, doing the same.
Which, truth be told, is actually a fairly important exercise for me, as it is the events of this previous year that have led me back HERE. To writing. To Functionalish. To like-minded and like-bodied community.
But, in order to understand how I got here, you have to, well, UNDERSTAND how I got here. Which means you need to hear me deeply and with great intention reflect on this past year—for which I apologize ahead of time. (I am, well, for lack of a better way to put it, LONG-WINDED. But at times I am also mildly amusing, so that is hopefully a plus.) Every journey that leads you somewhere—which has led ME back HERE—is, in truth, a STORY.
And what you’re about to read is MINE.
At church this morning, the pastor who was preaching—a good friend of mine—called up to receive prayer anyone who felt they’d had a really bad year in 2018. And said that if you have to think about that for too long, you probably haven’t.
So, after praying for another good pastor friend of mine—for her very bad year—I grabbed yet another pastor friend (we’re a BIG church—we have almost 30 pastors) and said, “you know, I’m not REALLY sure, but I THNK I might have had a bad year…”
Just MAYBE.
The story of 2018 actually begins with the fall of 2017 because I entered 2018 already EXHAUSTED. With a capital X.
The fall of 2017 was a whirlwind that swirled around me helping lead a city-wide opioid initiative with several other amazing organizations (I’m talking to YOU Ignite Our City and Greater Good Ambassadors). It culminated with a conference hosted at our church that drew several hundred people and was capped off by a visit by and Q&A between the Governor and our senior pastor on stage.
It. Was. Amazing.
IT. WAS. ALSO. EXHAUSTING.
I’d been diagnosed with fibromyalgia and chronic fatigue syndrome (I still don’t fully agree with those diagnoses, but that’s another rant for another time) at least few years prior, so I went into the event already tired. And fortunately, the team gave me a lot of grace for that. Because they’re AWESOME. But I digress…
In the meantime, my hormones began to shift again (DON’T EVEN GET ME STARTED ON HORMONES) and my menstrual migraines started breaking through again despite being on 50 mg of amitriptyline (hello, 75-pound weight gain) and 300mg progesterone. Hot flashes and night sweats began flirting with me more steadily. (Funny story—for the first three months I had hot flashes I thought I was fighting some kind of weird virus because my face felt all flushed, but every time I took my temperature I didn’t have a fever. I was SO. CONFUSED.) But even better yet, my lifelong, on and off again relationship with insomnia decided it was finally time to make a long-term commitment and in November I pretty much stopped sleeping altogether.
Like, on any given night I was taking some obnoxious combination of magnesium, melatonin, an antidepressant with drowsy effects, the amitriptyline with drowsy effects, Benadryl, valerian root, Z-quill, Unisom, Dramamine, and a VERY OLD prescription of muscle relaxers BY THE HANDFUL and was STILL not sleeping.
Needless to say, this was not good. And by not good, I mean that it reactivated the Epstein Barr virus in my system and suddenly I wasn’t just tired and achy, I FELT LIKE I’D BEEN HIT BY A TRAIN AND DRAGGED BEHIND IT FOR MILES.
For those of you not familiar with EBV, it’s the virus that causes mononucleosis and it’s part of the herpes family of viruses, just like chicken pox. And just like chicken pox, it stays in your system FOR. EV. ER., usually dormant. But if it gets triggered later in life—by things like stress, chronic illness, NOT SLEEPING—it reactivates. With a vengeance. In the case of chicken pox it torments you with shingles. In the case of EBV it is akin to the torture machine in the Princess Bride that actually SUCKS THE LIFE OUT OF ITS VICTIMS.
So, that’s fun.
January and February were a blur to me, other than remembering that I delivered four sessions at a lovely women’s conference for which I’d been invited to be the speaker. I remember I’d just started Trazadone and I had not yet understood or mastered the “you MUST fall asleep in this 30 minute window of drowsiness or you’re screwed” nature of this medication, so I’d frantically called my doctor and she gave me a week’s worth of Ambien to ensure I’d get at least SOME sleep to keep me going through the conference.
It was an exhausting but rewarding experience and I did, indeed, make it through. BUT it took me several weeks to recover—if you could even really call the small amount of energy I’d regained “recovery.” But, more importantly, I learned something VERY important about Ambien.
You should NOT have your phone near the bed when you’re on Ambien.
Why? Well, remember, during the Olympics, how they kept advertising those 23 and Me genetic tests? I thought they looked interesting, so I looked them up while I was waiting to finally get to watch the only thing that mattered this Olympics: Shawn White. I determined they were, indeed, VERY interesting, but WAY too expensive, so I put them out of my mind.
A month or so later I was looking at my checking account and couldn’t figure out what this particular $400 charge was for…
YUP. I Ambien-ordered genetic testing.
For anyone interested in knowing, I am 99.8% Western European. If you’ve SEEN my picture, this should shock NO. ONE.
(In other words, Gurl is HELLA WHITE.)
But I digress, yet again.
One plus side to 2018 starting off on an exhausted foot was I determined I was NOT going to spend my year doing all the things I thought I “should” be doing and I was going to do the things I WANTED to, instead. (Limited, of course, by finances, time, and ENERGY.) I dubbed 2018 my “Year of Want To.” So one of the first determinations I made was that I was reading ABSOLUTELY NOTHING THAT WOULD MAKE ME A BETTER PERSON this year, as I had done plenty of that during all the other (mumble) years of my life. THIS year, I was only going to read FICTION.
Turns out, cranking through books is the ONE thing insomnia is good for. (Well, that and binge-watching an entire season of television on Netflix in one night.) Between January and the end of September, I’d cranked through, I believe, about 85 novels.
AND made about 35 fairly large-scale pieces of jewelry.
It was just what I WANTED to do. (Speaking of wanting or NEEDING to do things—you’re about half way through this right now. You might want to consider a snack or potty break.)
In the meantime, I began seeing an internist in February who used some alternative and functional approaches to healing autoimmune issues and with whom at least three of my good friends had found good results. The tech explained to me that most people feel better between their 2nd and 3rd protocols of meds and supplements, so I felt a LITTLE bit of hope for the first time in over six months.
I also was sent to the OB/GYN by my GP because she felt at end of her rope with my hormonal issues. The OB/GYN suggested that I go off the progesterone and go on a low dose birth control pill, which we agreed would be a reasonable next step for dealing with the insomnia and menstrual migraines.
So, per her instructions, I weaned off progesterone just in time to begin the 1st day start birth control pill. And I was never more excited to take a pill in my life. Suddently, for the SECOND time in over six months I felt a LITTLE bit of hope that this could actually improve.
That hope was short-lived.
Within five days of starting the pill I had about a six-inch line of hot, red, painful bumps on my right inner thigh. Within four more days I was taken straight from the doppler scan of said leg down to the ED with 100% blockage in my superficial vein and almost 80% blockage in the deep vein. (On the night we had tickets to Cirque de Soleil. For the very first time. Which *I* had bought the family for Christmas.)
That all resulted in a blood thinner, compression stockings, two weeks off work, and the instructions to keep moving but not too much. Which trying to calculate is enough to keep my mind spinning for days on end.
And of course, life doesn’t stop when this stuff happens. My daughter was having difficulties, which she often processes with her counselor mother. (And which I would want no other way.) I was in the midst of proposing and then hiring an AmeriCorps Vista employee. My son confessed one day in the car that he’d forgotten how helpful it was to talk to me because once Keira started having problems and then I got sick, too, he didn’t want to burden me with his “little” issues. (SOBBED later over THAT one.) And, after having not been on rotation for over a year, I preached at our large campus (3 services, 7000 people total) twice and at one of our smaller campuses (ONE SERVICE, PRAISE GOD) once, all in a three month span.
So, needless to say, I was not getting any LESS tired. In fact, it was only getting worse. And then, to top things off, all of my tests for blood-clotting factors came back CLEAR, which is normally a GOOD thing. But what this actually meant was that the hormonal changes of going OFF progesterone and ONTO the pill were likely what caused the clot to form.
WHICH MEANT TAKING HORMONES OF ANY KIND WAS ENTIRELY OFF THE TABLE FOREVER.
Which was deeply, DEEPLY discouraging.
Now, despite the fact that our church staff is about 200 people, we’re actually a pretty close bunch, and I had been sharing at staff prayer my issues with the insomnia, fatigue, and, OBVI, the blood clots.
Which resulted in our senior pastor calling me into his office late spring to see how I was doing and offering me the opportunity to drop my hours and redistribute them somewhere else on my team.
And while I know this was coming out of a true and deep concern and affection for me as a person, I’m not gonna lie. I was pretty shook. Not because I was afraid for my job or didn’t feel valued or felt he had any ulterior motive or anything of the sort.
I felt shook because I love my job. And I worked hard to get it. And it gave me purpose and significance.
And I didn’t know who I’d be without it.
So I asked him if I could think and pray about it over the summer, which is our slow time, and he agreed. But as summer came and went and I experimented with pulling back I found I was STILL growing more and more exhausted.
Finally, my doctor and I concluded I needed to take a break, and she drew up the paperwork for FMLA and for the short term disability policy our church provides for us. (Which would be a LOVELY benefit, were the company not such a pain in the patookus to work with.) We determined it would be a time to rest, rest, and rest. AND do a sleep study. So that’s what we did.
In an attempt to put the reactivated EBV into remission, I did literally NOTHING for the entire month of September. I only left the house for doctor’s appointments, and, as they were usually way across town, I always asked a friend to drive me. I sat on my porch and I read and I read and I read. And in between reading, I occasionally made a necklace. Or a bracelet. But other than that, I truly did NOTHING. NO. THING.
And I was still not feeling ANY better.
Getting the disability claims approved turned out to be extremely difficult, and over the course of the two months I was off my doctor grew increasingly frustrated with me. Finally, in one appointment, she insisted that what we were dealing with was treatment resistant depression and that was how we were going to approach getting the claim approved.
I went out to my friend’s car and sobbed for 15 minutes. Because I was a counselor for crying out loud. I knew enough to know THIS WAS NOT MERELY DEPRESSION. I’d been depressed on and off my whole stinking life and it had NEVER CAUSED ANYTHING LIKE THIS. (And how about this for a thought—I FEEL LIKE ABSOLUTE CRAP AND NO ONE CAN MAKE IT BETTER. NO CRAP I’M DEPRESSED!!!) It was pretty much akin to her telling me it was all in my head. And I was a shocked and furious emotional wreck.
Three weeks to a month later I was back in her office with yet another set of paperwork to get filled out. This time she came in loaded for bear and let me have it from the moment she came in the door. She told me, because of how I answered the depression survey I’d been given when I came in, that I was in denial about the seriousness of my depression and that I kept searching all over for alternative answers and that those alternatives obviously weren’t working because I wasn’t getting better. She told me it was just like when I was “in denial” with my daughter and taking her to specialist after specialist looking for some type of cause when “what really turned things around for her was when we treated her depression and she went to counseling.” (Completely forgetting, somehow, HER THREE-WEEK PAIN REHABILITATION PROGRAM AT THE CLEVELAND CLINIC.) She accused me of not doing everything I could to get my sleep under control and get back to work even though I was following the exact orders of the sleep specialist SHE HAD SENT ME TO. And so on, and so on.
As I sat sobbing in her office.
Unfortunately, my poor father had driven me to the appointment that day.
Which meant my dear, loving, slightly emotional father got to sit with me in the car as I sobbed for yet another 15-20 minutes, totally freaking him out, making HIM cry, and making him feel worried and helpless.
Kinda like I felt.
(For the record, I did, in our next appointment, confront my doctor about how she handled her frustration with me, and we had a very productive conversation in which she shared her frustrations more articulately and I acknowledged the places where there was validity to them and offered ways in which she could have been more clear and she owned that “it was not my best moment” and apologized.)
So this brings us pretty much up to the point where I resurrected my Functionalish Instagram account and began “micro-blogging” about my experiences and about trying to figure out how on earth someone leads an abundant life when they have so many limits.
And I shared there, as I wrapped up my medical leave, how I had found the space to grieve over the two months I was off not only for the things that I had lost, personally, due to chronic illness but for my daughter’s losses as well—emotions I hadn’t been able to come within 20 feet of for at least a good five years.
I shared, as I began posting, about how nervous I was regarding going back to work. About how I wasn’t ready. About how discouraged I was that I still wasn’t feeling ANY BETTER despite everything I was doing, all of which my other doctors said I was doing RIGHT. About my fear that I was going to return to work only to crash and burn like Keira did her freshman year and end up even worse off than I was at that moment. About my concerns that if I couldn’t do the kind of work I was doing—or couldn’t even work at all—that my life would not have significance and that—and this was the true root of my fear—God would be disappointed with me.
(I know, I know. It’s ridiculous. I’m a counselor AND a pastor. I KNOW THAT’S NOT TRUE. But knowing and feeling are two different things. And it FELT true.)
I have since been back at work for two months. I have had more conversations with my senior pastor about my present and about my future. Candid conversations about his concerns for my health and how I utilize my time and energy on staff because I have a voice that needs to be heard and it can’t be if I wear myself out doing things of lesser importance. I’ve had conversations with my husband about both what I WANT and what is actually, realistically BEST for me and for our family. I’ve had conversations with trusted friends and colleagues (who are likewise trusted friends) about how my aspirations and sense of calling are SO misaligned with my physical reality and how it FRUSTRATES THE SNOT OUT OF ME EVERY SINGLE DAY to have drive and ability but not capacity.
And the outcomes of those conversations are that while some things have been settled, there are STILL many decisions still ahead of me in the next few months. None of which I know the answers to, as of yet.
And in the midst of it all remains this torture machine draining the life out of me bit by bit.
I’m still struggling to sleep despite a regimen of 14 different pills I have to take for a variety of different things at bedtime, all also intended to help me sleep.
I’m still popping Maxalt a minimum of 3-4 days in a row every time my period comes around to keep from being bed-bound with my migraines. (And yes, I know there is a limit to how many days in a row you’re supposed to take those. The migraine doesn’t go away until the hormones rebalance. The Maxalt doesn’t go away until the migraines do.)
And I’m still worn out quickly despite a medical and supplement regimen that should have me LITERALLY bouncing off the walls. (I always hear Rob Lowe on Parks and Recreation in my head when I say that. PLEASE tell me I’m not the only one.) Two Thanksgivings in one day knocked me out and had me feeling like I had the flu (I didn’t—it was the EBV and CFS) for at least four days. FOUR DAYS. So I intentionally spread Christmas out to one activity per day and it was STILL physically exhausting. And New Year’s Eve which we traditionally spend with the BFF? Let’s just say it is likely I’m going to be recovering for a looooooooong time.
Which leads us, naturally, into New Year’s Day. Into 2019.
Through it all—through the rollercoaster ride of not just last year but the last eight to nine—I keep coming back to two primary questions: What CAN I change? And what must I learn to just ACCEPT?
And I don’t fully know the answers. But we’re going to spend some time, together this year, looking more deeply into the questions.
I know I will cut back to 30 hours at work, which kills me but is the right decision.
I know I will continue to write more at home because it’s more productive than playing Toy Crush when I’m exhausted and need to check out to recharge a bit.
I know there are important conversations to be had and dates on the calendar already set on which to have them.
And in it all, I feel this surreal experience of fearful, fitful peace. That’s the only way I know to describe it. Other than, perhaps, “the peace that passes all understanding.”
My friend who preached this morning told us, “we do not have to be AT the work all the time to be ABOUT the good work of God.” That God looks at all we do sometimes and says, “enough already.” That we are to, as Psalm 46 says, be still and know that HE is God. Which is a beautiful truth but an exasperating thing to attempt.
So, here’s where I land, after much reflection: I haven’t the foggiest idea what 2019 will bring for me. NO. FREAKING. CLUE. All I know is that Psalm 46 also says, GOD IS WITHIN HER, SHE WILL NOT FALL.
And, if nothing else, I am clinging to THAT.
So, as we kick 2018 to the curb and make sure it’s in the GARBAGE, not the RECYCLE BIN (because ain’t NO WAY I want ANY version of this past year being reincarnated in any WAY, SHAPE, OR FORM), I pause for this moment, not just to reflect, but to wish YOU, my dear friends, a happy, happy new year, and so much more.
May it TRULY be a NEW year for all of us.