Yelling at God

It’s been a day.  Hell… it’s been a year, and it’s not quite over yet.

I realize I’ve been silent on this blog for a long time.  A L-O-N-G time.  Almost eight months at this point, if my math is correct.  I certainly never intended to go so long without publishing anything, but our family has been in “survival mode” for much of this year.  And finding the time to write when I actually have energy, creativity and cohesive thoughts has been a bit like herding cats… just not happening. 

Until today. 

What changed, you ask?

I’m yelling at God.

Yes, you read that correctly:  I’m admittedly, unabashedly, unapologetically yelling at God.  I have had enough of the insanity that I have been dealing with for years and it is catching up with me.  Kiddo’s insanely early birth and the toll it has taken on us has been completely draining on all accounts:  physical, mental, emotional, spiritual, parental, marital, sexual, financial and energetic.

I am drained.  We are drained.  And I have little left to give.  The constant stress has been taking a huge toll on my physical health, and everything came to a head today.  And I needed to write because I can’t stand the feeling of insanity any longer.  So, even if I’m the only one to read what I write and (eventually) publish, I don’t care.  I just have to do it.  I need the relief this cathartic process will bring.  So I hope you’ll stay with me.  (And if you really don’t like the idea of me yelling at God, then you probably should just bail right now.  I’m not apologetic in the least for expressing how I feel, and I plan to do exactly that.)

Before I get to the details about today, let me back up for just a bit.

If you’ve read my prior posts, you’re aware that our family agreed to implement a (primarily) Paleo food plan mid-February.  We did a lot of research about what was involved, designed a plan and then jumped in together.  The impetus for our change was to help Kiddo’s behavior improve, but Hubby and I agreed we could use some major upgrades in our own health, so we were on board from the start.  (Truth be told, I was on board much more quickly than he was, but he came around eventually.)  The beginning date for our official transition was February 16th -- more than thirty-eight (!) weeks ago.

Before I go into the details of how I’ve experienced some health changes, I want to acknowledge that there is a wide definition of what “Paleo” means in the health-conscious and food-driven communities.  And, like most other programs or belief systems, there are rabid fans who take things to extremes.  God forbid I actually eat a regular potato or white rice in some circles… I’d be shunned!  And if you’re reading this and know anything about me, you know I’m not going to let some asshat shame me because I enjoyed a tuber with my grass-fed, humanely-raised beef hamburger.  I just don’t operate that way.

So, rather than getting attached to a specific definition (especially “low-carb” – that really doesn’t do the Paleo focus justice), we have decided that we are eating a “low-crap” diet:  delicious, whole foods, which include pastured eggs, naturally-cured or grass-fed meats (whenever possible), lots of organic fruits and veggies (we prefer locally-sourced) and healthy fats.  We also have removed grains such as wheat, barley, rye and others with gluten as the main protein, since they are a huge challenge for our health and a big contributor to inflammation, autoimmune challenges (more on that later for me), and neurological function (especially important for Kiddo and his challenges).

As we got rolling with our primarily-Paleo plan, we experienced some initial detox as our systems cleared the foods we were no longer eating.  Kiddo had a temp for about three days with no other symptoms; I had what felt like a sinus infection for about a week and Hubby didn’t seem the least bit affected.  (No surprise there; he rarely gets ill and, when he does, seems to clear it pretty quickly.)

After we got through that period, we all started feeling great.  Kiddo’s behavior began improving at school, his ability to take direction and complete his work also got better, and he actually gained a little bit of weight, which is a huge deal for him.  Hubby noticed his own IBS disappeared, and he began sleeping better, which was a great improvement for him after dealing with chronic insomnia for 20+ years.

My health changes were profound.  In the first 6 weeks alone, my cholesterol dropped 34 points (all the while eating bacon!), my blood sugar came down 10 points (from just above “normal” to well into the “normal” range) and my blood pressure dropped as well.  As a matter of fact, I didn’t even realize how much it had come down until I got a cuff to monitor it and started tracking it on a daily basis.  After realizing my meds were making me dizzy, I said “buh-bye” to them and haven’t looked back!  In addition to all of those lovely changes, I shed 21 pounds in the first 17 weeks on our Paleo plan.  Things felt great through February and March… until they didn’t.

By the end of March, I was feeling very sluggish and tired, having bursts of anxiety that seemed to come out of nowhere, experiencing heart palpitations and general depression, and felt like I was dragging around two large cement blocks as legs every day.  I checked in with my doctor and she wanted to run blood work to check on my thyroid, so we did.  At the time, she tested my TSH (Thyroid Stimulating Hormone) level and everything came back within the “normal” range.  She suggested I wasn’t getting enough carbs so I agreed to eat more of them.  And I did.  But I still didn’t feel better.  I actually even felt a bit worse.

In mid-April, I went on a weekend tour with a handbell group of which I’m a member, and had some anxiety about maintaining this eating plan while on the road.  Our tour coordinator was very helpful and accommodating in planning where we would eat so I would have choices, and sharing dietary info with our hosts.  And I spent a good bit of time talking with others who eat gluten-free and/or Paleo diets about how they handle things when they’re away from home and not cooking for themselves.  I was as prepared as I could be at that time.

Still, I was having these bouts of anxiety that would just burst out of nowhere and I didn’t know what to do with myself.  (A few of them even happened in the middle of our concerts on that tour, and I’ve been playing in front of audiences for enough years to know they had nothing to do with performance anxiety.)  I put it off to being nervous about traveling with so many new things to consider, being new to the Paleo lifestyle, being away from home, or whatever other thing that made sense at the time.  It wasn’t until I was home and still experiencing the same symptoms – and they were getting worse -- that I realized something was really off.

Fast-forward to June.  We had a planned session with the psychologist who works with our family (the same person who encouraged us to eliminate the gluten, dyes and preservatives) and I shared that I still was feeling awful and had been since the end of March.  She asked about my blood work and suggested, despite the normal TSH results that came back, something “wasn’t right” and suggested I check back with my doctor for more info.

Thankfully, I had established myself with a Naturopathic Doctor in November of last year, so I planned a consult with her to look at more specifics and determine a plan of action.  She wanted more, in-depth blood work done which, thankfully, my primary could order.  (Side note:  while I am incredibly grateful to the advances in Western medicine for saving Kiddo’s life and mine, it is incredibly lacking when it comes to looking deeply enough into some things, and considering that a “normal” range isn’t necessarily normal for everyone.  This is one of them.) 

Of course, it took more time to get back in to see my primary care physician, get the tests ordered and done, and then get the results.  (At least I can access them online myself so I know when they’re done and what the results are.)  I had the tests done in early August and met with her for my physical a few weeks later.  The results of that blood work confirmed our suspicion:  though my TSH was normal, there was a high antibody presence in my thyroid, which indicated an auto-immune response.  In a nutshell, my body was attacking my thyroid, causing it to malfunction.

Since then, I’ve had other tests done as well, to monitor cortisol levels in my body (literally off the charts in some cases; 2.5 to 10 times higher than the optimal range) and an ultrasound on my thyroid to rule out cancer.  I didn’t suspect that was present and, thankfully, the images confirmed my hunch was correct.  It did show some nodes (“goiters”) but nothing abnormal or threatening in size or shape.  (We will be monitoring those over time.)

As disappointing as it was to hear that this was happening, it was also a bit of a relief to get information that helped describe why I had been feeling so terrible.  If you’ve ever experienced thyroid challenges (either hyper- or hypo-), then you understand how incredibly draining the process is.  In my case, the symptoms pointed to “Hashimoto’s thyroiditis” (my primary’s suspected diagnosis) and I was referred to an endocrinologist.  At that time, the earliest appointment available was… wait for it… the end of January.

Fortunately, at the end of September, I was made aware of a cancellation for today.  So I jumped on it right away.  At that point, waiting another six weeks was not nearly as tough to stomach as it would have been to go into next year.

So… back to today.

I felt pretty decent going into today’s appointment in terms of my preparation.  I had handled all of the screening paperwork, brought my slew of supplements (which, I must say, have been the only things helping me stay functional at this point), printed copies of all of my lab reports for adrenal/cortisol testing, blood work, basal temperature and more and arrived in plenty of time.  I read up on thyroid challenges, possible courses of treatment, side effects of potential medications, questions to ask and more.  I was ready.  Well… I thought I was ready.

After meeting the doctor and going through my history, symptoms, supplements and lab results, he did another ultrasound on my thyroid.  All the while, he was talking to me about Hashimoto’s – the cause, symptoms, and such – which was all information I knew because of the time I’ve researched my symptoms over the past eight months.  I was right in step with him.  Or so I thought.

When the ultrasound was over, he started wrapping up the appointment and told me I’d need a follow-up visit in six months to monitor a couple of small cysts he found during his exam.

Wait.  What?  Just a follow-up?

Yes, just a follow-up.

But what about…   and I went through the list again.  The symptoms:  feeling like the walking dead on a regular basis; cold hands and feet out of nowhere; loss of mental clarity and function; low basal temperature (I run an average of 97.2 most days); insomnia when I need to sleep, yet yawning and feeling exhausted all day long.  The list went on.

And he replied that everything “looked normal” and there is nothing to do but wait and monitor the cysts on my thyroid.

Oh, dear God.  I’m going to go crazy if I have to wait.  I’ve already been feeling like shit for eight months and now I’m going to need to wait six more?!  No f-ing way!  What about a trial of Armor thyroid or something to see if it makes even a little impact on how I feel?  Maybe just a four-week trial?

No.  The numbers don’t indicate it.  Maybe you can find someone else who will prescribe it for you, but there is nothing wrong.

And I started crying.  Sobbing, really.  (Oh, the poor intern he had with him.  She clearly was uncomfortable and didn’t know what to do with herself while seeing me come unglued.)  I think my mouth said something like this:

But, see, I know my body.  And something IS wrong.  Or, at least, something’s not right.  I know my TSH is “normal” but my body isn’t feeling that way.  And the antibodies are high.  And I’m desperate.  I need help.  I’m in a chronic stress situation.  I have a kid with Cerebral Palsy and an empty bank account.  And he needs therapies and care givers and we’re trying to figure out how to afford them.  And we desperately need respite but can’t find it.  I can barely function and I’m gaining weight for no reason and I KNOW something isn’t right… and now I’m leaving here with nothing.  You were supposed to tell me you could do something for me today.  I need help.  Where do I go from here?

Have I mentioned yet that he looked at me like I had three heads?  I think he was completely unprepared for the litany of concerns and questions (and, of course the sobbing) and by the sheer fact that I didn’t just go quietly when he said so.  (And that poor intern.  I’m quite certain she’ll remember my visit as a learning experience.  It’s kind of funny to me now.  Total deer-in-the-headlights moment.  I certainly can’t blame her.)

“Well, you’ll need to go back to your primary care physician.”

I’m not sure all of what he said after that but I know it was something about anti-depressants (tried a couple of different ones already; had significant weight gain with two of them, and a horrible, scary reaction to a third), gastric bypass (already had that consult; it’s not an option for me right now for many reasons) and something else I don’t quite remember.  He did agree to run a urinalysis-based adrenal test and wrote the order before I left, but it was clear he put it in the category of throwing spaghetti to the wall in the hopes of something sticking.  He reminded me of the need to set up a six-month follow-up, and I gathered up my things and thanked him (and the intern, poor gal) for their time.

I barely made it to the check-out area before the sobs started again.  I cried the whole way through the check-out process (the gal helping me was such a gem; thoughtful in asking if she could be of help but, thankfully, not reciting trite platitudes), all the way down the hall, up to catch one of my friends in the massage center (she wasn’t there) and out to the parking ramp.  By the time I got to my car, I could barely breathe.  I felt so alone and so hopeless.  How could God bring me this far and then dump out?

I knew I wasn’t safe to drive home so I sat there for a moment, thinking, “Where can I go?  What can I do?  I need to talk to someone but I don’t know who.  Hubby’s still in class and I need someone now.”  And then I realized I was only two blocks away from my church.  I knew I needed to go there.

I had no idea if our Senior Pastor was available, but I knew deep down that I needed to talk with him.  My faith has been tested so much these past eight years, but today felt like the breaking point.  Like, if I don’t find even a mustard seed’s worth of faith, I’m going to lose it forever.

So I drove over there and went in.  I asked if he was available, but I was told he was in a meeting.  As I turned to leave, the receptionist must have realized how close I was to my breaking point and she said, “Hang on just a minute – I’ll see if I can snag him.”  I’m so grateful she did.

As soon as he saw me, he reached out and put his arm around me and then walked me to a private office.  He sat with me for a moment while I sobbed and tried to pull myself together enough to speak so he could understand me.  Somehow, I managed to concisely spill all the details of what this year has been like (kiddo, financial challenges, marital stress, feeling like shit all the time, and more), with the kicker of today’s surprise.

I remember saying, “Who in the world would think results that say “nothing’s wrong” would be a reason for me to fall apart?!  I should be celebrating that, right?  But I know something’s not right and I feel like I’ve been sent home to just deal with it.  And I’m not sure how much more of this I can take.  What kind of sick irony is it that I get the “clean” bill of health and I feel like the rug has been completely pulled out from under me again?”  (The last time I had this feeling was January 5, 2010, when we got Kiddo’s “official” diagnosis of Cerebral Palsy.  It was an equally unpleasant sensation then, too.)

We talked about the year and the hardships my family has faced.  And how it’s been tough to talk about them to many people.  Who really understands what a long-term care-giving situation looks like until they’ve done it personally for some time?  Who else really gets the exhaustion and frustration and hand-wringing, gut-wrenching pain, grief and challenges that come with a special-needs situation except another person in the same boat?  Who understands what it feels like to see the medical bills pile up, hassle the insurance rejections month after month and yet know that, despite the negative checking account balance, the therapies have to go on as a matter of sheer survival?  Who can relate to the incredible amount of resources – time, energy and money – that having a Kiddo like ours requires?

And where… where, oh where… is God in all of this?  Really.  Why do I feel like I’m doing this alone so much of the time?  Why, when I work my ass off to do the best I can, help where needed, spend thoughtfully, give generously and remain grateful, does it feel like the shit storm keeps blowing our way?  Why are we on a sinking ship with only a teaspoon to bail us out?

And he said the most surprising thing to me in response.  I remember it verbatim because it was so unexpected.  He said, “So, how long has it been since you’ve yelled at God?”

What?

He repeated, "How long has it been since you’ve yelled at God?"

Oh, my word – I started laughing so hard… really deep, good old belly-clenching laughter.  Never in a million years could I have imagined something like that coming out of my pastor’s mouth.  And it was exactly what I needed to hear.

Once I collected myself, I told him that I thought I yelled often enough that I was probably already on God’s “shit list” and that I was trying to focus on gratitude a lot more, rather than get caught up in the “glass is half-empty” perspective.  After chuckling, he replied, while he appreciated that perspective, there is a time for gratitude and a time for yelling.  And then he suggested maybe it’s high time I did a bit more yelling.  We’ve gone through so much the last eight years and we need a break – a number of breaks, actually.  And good ones.  Positive ones.  We need some slack.  Some help.  Some respite.  Some breathing room.  Some resources.  Some hope.  Some love.

He referenced the Psalms and how full of emotion they are – people crying and questioning and yelling at God, asking where He has gone and why they are dealing with the struggles they have.  And he reminded me that it’s all okay.  It’s okay that I’m frustrated by the heavy load we carry.  It’s okay that I get pissed off by people who repeat trite platitudes instead of really plugging in and paying attention.  (You know not to push that “button” of mine by now, I’m sure.)  It’s okay to question if I even have a mustard seed’s worth of faith in my heart anymore, and yell at God for what feels like abandonment.  And, while I already knew these things to be true, it was so helpful to hear him say it is all okay.

I try to live my life based in compassion and love for others, considering what they need and how I might be of assistance.  I do my best to be thoughtful and careful, and draw on my intuition and discernment when making major decisions.  I know I have a sharp tongue and a quick wit and think of those traits as assets; they are interesting and fun and add levity where needed.  Hubby and I have been careful in choosing how and when to settle down, start a family, and more.  And yet our road has been incredibly tough.  The terrain, at times, has seemed almost impossible to navigate.  Our journey since Kiddo’s birth has been exhausting with no end in sight.  And it feels horribly unfair much of the time, given all of the energy I have put into shaping how I live out my life on this planet.

Yep.  I said it.

Unfair.

I thought maybe I’d hear something in response from my pastor that echoed the “life isn’t fair” sentiment, but I should have known better based on the kind of man he is.  He said, “You know, Julie… I think you’re right.  This all really isn’t fair.  I hate it when the people I love hurt or have tough things happen to them.  Yet, look at all you and (Hubby) are doing for (Kiddo).  Most of us would have given up long ago.  But not you.  You are still going.  You have tenacity of spirit like none I’ve ever seen.  You are running a marathon that most of us would have quit long ago.”

I laughed and replied, “Well, maybe I’m running the marathon, but I’m one of those runners who will take an additional two days to finish the race.  When I cross the finish line, it’s long after the celebration has happened and everyone else has gone home.”

And then he said, “Well, maybe so.  But here’s the thing:  I know you’ll get up again the next morning and start another marathon while everyone else is still recovering.”

Wow.  Really?  I don’t know what to say to that.

“It’s your love, Julie.  It’s your love for (Kiddo) and (Hubby) that keeps you running, long after everyone else has gone home.  And that is really the power of God.  So go ahead and yell at Him.  He can take it.  He might even deserve it from you right now.  His love is already shining through you.  He’s not going to leave you because you’re angry at Him right now.  So go ahead and yell at Him.”

So, here I am, 3900+ words later, just beginning to yell at God.  And I doubt I’m anywhere near finished.  But I’m calling it good for tonight because it’s late and I'm tired and I have a new marathon to start tomorrow.