Patient

Hi friends.

I've been trying to find a way to write this post.  To piece all the disparate parts together, to recount all of the story lines, convey all of the emotions, share all of the thoughts involved in this journey.  I've finally decided I have to quit trying to figure it out and just write.  It may not be complete, it may not make perfect sense, but here it is.  A start, anyway.

Some people have things that plague them their entire lives - that one annoying thing (habit, life area, belief) that you can't shake no matter how hard you try.  Mine is health.  It seems that no matter what, complicated health issues surround me. 

It's been this way my whole life.  I've always felt generally sick and tired, ever since I can remember, but never did anyone validate my general malaise or diagnose me with anything.  In fact, from an early age I was outright accused of being an over-dramatic hypochondriac - an accusation I still struggle with internally almost daily.  Growing up in Austin, one of the airborn allergy capitals of the world, at some point during my adolescence I decided the constant sniffles and low energy level had to be allergies.  I wouldn't chase down the symptoms with a doctor because that would be proving "them" right, those owners of the disembodied voices that lingered in order to accuse. 

And, the voices in my head told me, I couldn't really be sick.  I'm a hypochondriac, remember?  This is all in my head.

So I labored on through life, playing sports and dancing and generally feeling yucky.  Ignoring or invalidating how I felt because that's what I thought I was supposed to do.  Push through, toughen up, get over it, quit complaining.

My senior year in high school the yuckiness became yuckier.  I finally had to turn to doctors for help and here is a sampling of what they said:

• In response to both of my knees simply going out during dance rehearsal one day, a respected orthopedic surgeon said: "you're developing arthritis.  Nothing can be done at this stage.  You'll have to wait it out until your knees get so bad that knee replacement surgery is your only option.  We're not there yet.  In the meantime, no climbing stairs, no dancing certainly, no sports."  I was eighteen years old.
• Later, at age twenty-eight, my dog pulled an already weak shoulder almost completely out of joint.  The sports medicine doctors I saw said things like: "you have shoulder impingment and tendinitis - you just need to exercise."  Now, six years later, I have a hierneated disc in my cervical spine and periodic numbness down both of my arms - all of which is directly related to the original weakness and malalignment of my shoulder joint.  The muscles in my right arm are dieing, effectively.  Nearly every morning I can't feel my hand and don't have the strength to open my daughter's medicine, for example.  The childproof top takes me around ten tries before I can prise it loose.
• When I was pregnant with both of my children I would randomly pass out.  In the hospital my OB would run the standard emergency markers: blood pressure, keytones (for dehydration), blood sugar, heart rate, etc.  She would then look at me and say, "well Jenny I don't know what to tell you.  There seems to be nothing wrong with you physically."  Hmmm, does she think I thought it would be fun to get rushed to the hospital by my terrified husband every week or so?  Yea right.

The list goes on.  And on.  And on.  There are much more serious matters on my list, but I can't go there.  Some of it is too private and much of it is too painful.

Here's my caveat: I'm not a victim and doctors aren't evil.  Narrow-minded, perhaps.  Unwilling to dig deeper and listen well, maybe.  Too quick to look for the obvious, expected answer, tal vez.  I don't know.  I do know that I'm not at all qualified to make that judgment.  I'm still working through lots of anger and resentment where doctors are concerned.  I won't even pretend to have proper perspective.  I'm also trying to sift through how I could have made different choices (like finding a PCP early on who could have managed all the specialists for me - put the pieces together, so to speak).

So here I am at age thirty-three and health continues to be the thing I deal with.  Last night my husband took our fifteen-month-old daughter to the ER in an ambulance because she had a seizure.  (She's fine now - seizure due to high fever that is now under control, praise God.)  That marked the eighty-eighth time I have witnessed and "triaged" a seizure.  I only called in the paramedics last night because she showed no signs of coming down from her seizure at the minute and a half mark.  Depending on the type of seizure, you can begin to lose brain cells due to lack of oxygen and can even die if the seizure moves past the three minute mark.  So yes, we dialed 9-1-1 even though I knew what to do (as did my husband: we're well-versed in seizure protocols).

My three-year-old son had a febrile seizure at age fifteen months. 

My husband had two Grand Mal seizures and eighty-four Petit Mal seizures between October of 2008 and March of 2009.  A healthy, thriving twenty-nine year old, suddenly he was an epileptic.  It's been almost two years since the day he had his last seizure - March 26, 2010.  I praise God every day.

My father had to undergo a lung transplant when I was eight months pregnant with my first because he was dieing from pulmonary fibrosis.  (It is over three years later, and he's doing very well.)

My daughter was diagnosed with an unexplained gross motor delay last summer (at age nine months) for which we've been in physical therapy at least once per week.  At the beginning of all of that - last October - she fell and broke two bones.  So began an investigative process that led us to find out she is vitamin D deficient.  Now we believe she might also have low cortisol levels, which could explain her overall muscle weakness.  We're awaiting those results (yes, the same daughter who was rushed to the hospital last night - for the third time in her little life, by the way).

While pregnant with my son and later with my daughter I started having random, unexplained "fainting" episodes.  I put the word "fainting" in quotes because I never completely pass out.  I am always conscious and aware, but I am also non-responsive.  In other words, I can hear and understand you, but I can not respond.  Not open my eyes, nor move my mouth; not lift my finger, nor hold my body up.  Despite all of the specialists I've seen, no one has figured it out yet.  The episodes are getting worse and more frequent.

The first time I "fainted", my OB said, "well, nothing's showing up on your vital signs or tests.  The baby seems to be fine.  Pregnant women sometimes faint - it will pass once you deliver the baby."  It has been three years and two months since my first episode.  They have not stopped.

When they continued with greater intensity and frequency during my second pregnancy, she referred me to a neurologist and a cardiologist.  I have had an echo-cardiogram, a tilt-table test, several EEG's, an MRI, several EKG's, continual heart monitoring, bedrest, evaluation in an Epilepsy Monitoring Unit to see if I have epilepsy, and three psychiatric evaluations.  There might be more, but I honestly think I've blocked it all out.

When the neurologists sent me to the cardiologists and the cardiologists sent me back to the neurologists - after the OB had sent me to both first, of course - the neurologists finally sent me to a psychiatrist who sent me back to the original neurologist.  I'm not making this up.  Tens of thousands of dollars in medical costs to my family, my employer...not to mention the emotional cost.  I didn't just have doctors subtly insinuating that I was making my symptoms up in my head - they literally referred me to a psychiatrist because they were convinced that is what was happening.  Until the psychiatrist disagreed with them, of course.  Then it was back to square one.  Not once did any of these specialists think to run a simply blood test.

Last summer I got a cold.  A really, really bad cold.  Six weeks into it I was so tired that I could barely lift my limbs.  I tracked down a primary care physician who took me seriously.  Because the cold hadn't gone away, she decided to test for mono and to "check my levels".  She didn't blame it on post-partem (an accusation, or suggestion, I've heard more times than I can count).  She just tried to figure it out.

It turns out I am Vitamin D deficient and Vitamin B12 low - both of which could explain fatigue, weakened immune system, muscle weakness, joint pain (the list goes on).  I found this out before we found out about Lily's deficiency.  I've been taking supplements for over six months, but I still feel like c-r-a-p.  I also continue to have these lovely episodes I was telling you about.  Sooooo, my doctor - you know, the one who takes me seriously - ran one last test.  Sort of out of desperation.  In December she pulled a cortisol level on me (cortisol is produced by your adrenal glands: for more detailed, nerdy information, click here.).  She called me from her family's Christmas vacation out of state on New Year's Day to tell me - almost in disbelief - "your cortisol level is low, actually; you need to see an endocrinologist".

A what?

I finally saw the endocrinologist last week.  I went in with my armor on.  I had research from reputable sites on the Internet along with books published by doctors (all of which said that most doctors do not recognize adrenal fatigue).  Three years into this process, I was ready for a fight.

I found a hospital tent, instead of a battlefield.

The doctor I met with listened to me patiently and then said: "yes, it is absolutely possible that you're having these episodes because you have low cortisol.  I have patients that this happens to all the time.  If your adrenal gland isn't working properly, you literally, physically can not respond to even the most basic levels of stress (cold weather, for example).  Your body will simply shut down in response."

She went on to say: "let's start with the basic adrenal tests and then we'll go from there.  But don't worry - we'll stick with you and figure this out.  There are lots of avenues we can explore."

At the same time - the same week, actually - I saw a pediatric endocrinologist for Lily.  She and Lily's neurologist also looked at Lily's "big picture" - the gross motor delay, the D deficiency, the fact that her mother had low D and cortisol while she was in the womb, the muscle weakness - and agreed to run further tests.  We're now checking Lily's cortisol to rule that out.  If her cortisol is fine, then she truly does just have an unexplained gross motor delay.  We'll continue therapy and move on.  If her cortisol is low, I'm not sure what the next steps are. 

What is my point?  For one, to share what occupies most of my time these days.  For another, to reflect. 

I often feel angry, overwhelmed, tired of dealing with health crisis after health crisis.  I want the "full life" Jesus promised - in both body and spirit.  But then I get moments like these to look back and reflect.  There is fullness here.  And I'm not just saying that to give myself a consolation prize.  I say it truly, from a place of belief that is - to coin a phrase - in the becoming.

"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us."  (Romans 5: 3-5, NIV)

I don't understand this journey.  Even referencing that Scripture feels at once self-aggrandizing and self-pitying, like I'm taking on the victim role all over again.  But I choose to believe that there is purpose here, a purpose that is both about me and beyond me.  I am learning the place where justice and mercy must meet.  I can not sit down and let people go un-cared for - that would be unjust.  I must advocate for my daughter, for example, or - even harder - fight for my own care.  But neither should I rail against all caregivers, making them the enemy standing on the other side of some demarcation line I have drawn.  I need to show them mercy even as I hope to receive mercy from them.  Compassion.  Kindness.  Justice can not truly exist without these. 

This is a truth I do not get yet.  I want to blame and scream that it is "unfair".  I want to tell these people that did not figure it out "if only".  "If only you had taken my levels sooner, we might have known what my kids were not getting in the womb."  "If only, then maybe we could have helped them."  How could you have let this happen?

Funny.  I often have the same question for God.

And yet it is the wrong question to be asking, somehow.  The right question - the question that makes me right with God - is how can I "love for the day is near"? (Hebrews 10:25, Romans 13:8-14)  How can I "love mercy, act justly, and walk humbly" all at the same time?  (Micah 6:8)

Short answer?  I have no idea.  But I know the One who does and that's whose voice I will listen for.  When I'm tired, overwhelmed, discouraged.  When another health issue confronts me and when I experience health in body as well as mind.