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Or why my migraines took forever to diagnose.

I have migraines.  I have officially had migraines for about 8 months.  I have had migraines unofficially at least since my second surgery.  Which was 8 years ago.

That’s some difference.  8 months and 8 years.

The reason?  Is simple.  I’d already had surgery twice to remove two brain tumors.  One of the first signs of a brain tumor are headaches.  To be clear, my tumors tend to asymptomatic.  Further, headaches have never been a symptom of my tumors.

Still, when I walked into many different doctors offices and said, “I’ve been having these headaches.  What’s up?”  The response from many different doctors, most of whom I have respected and liked, has been, “When was your last MRI?”  And it was never that long ago.

So that was pretty much the end of that conversation.

And the headaches never really ended.  And because surgery had always been so recent and because they were never ‘typical’ migraines and because my life was so unsettled and because I don’t like doctor’s offices….

I just never really fought to get anything diagnosed.  Because it was so hard.  Because I didn’t know how to fight that fight.  Until it got too bad.

Because my other diagnosis, my past got in the way.

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There are parts of my job that are exhausting and frustrating and that occasionally drive me crazy. And I love my job. Sometimes in the exact same moment. It can be hard to explain to people who exhausting/frustrating/crazy moments exist. It’s true. I think, sometimes because of what people say, sometimes because of what is in their eyes, that they get a better impression of me than they probably should. I experience the exhausting and the frustrating and the crazy-making. And then I tell myself I can’t quit and remind myself about why I love my job. And then I pray. That one always works.

I use my hands and my voice
to hold wine and bread and tell a story
but the story isn’t mine, and shortly,
neither is the wine or bread
I use my voice, it’s tone and strength,
my ability and view, to breathe life
through words I wrote, and speak
a Gospel new again, old as it may be
and not despite, but because of all the me present
it is not about me at all, but God,
Who wrote and spoke and breathed into me
This is what ministry is.

At the end of the day,
when I am tired and weary,
with all the little holes worn through myself
from the miles of listening,
I sit down and speak back the stories I have heard
to the One who listened with me
and remember that I was not alone
and neither are those who spoke.
As I work my way back through the worries I carry
it is as though I work thorns out and
let Divine hands soothe,
and carry the thorns away.
This is what ministry is.

It is knowing that the work I do
is never done alone
is never done for me
is never about me
is always important
but best of all
it is knowing that the work I do
matters to me
matters to people
matters to God.
This is what ministry is.

written 4-16-10

Last time it took three years.  Three years to feel like I had my body, my energy, my life back.

This time, it’s been two, mostly.  Two years and a couple of months since my last surgery, which is the date I celebrate, and will continue to celebrate.  But for the marking of how much longer it will be until I might feel like I have my body back, it hasn’t been two years.  After surgery there was the radiation.  And after that there was The Headache.  And recently I’ve discovered that the headaches never really stopped.  So the amount of time since my body has been dealing with a significant health issue?  Well, I’m not really sure.

Two years since surgery.  A year and three quarters since radiation.  A year and a half since The Headache ended.  A quarter year or so since the migraines have been under control.

I don’t know how long it will take this time.  I don’t even know when to start the clock.

Last time it took three years.

Today my head hurt.  A lot.  It doesn’t take much poking around in my archives to discover that this happens.  It happens often enough that I have a whole bunch of posts talking about headaches.  But today was different.

Today was different because it was the first day in nearly a week that my head had hurt.  I have a new doctor who has me on a new medication which is working.  The third fact more than makes up for the first and second facts.

Today was different because the new doctor gave me a second medication which actually makes the pain stop.  Hence the me sitting up, with the lights on, and typing right now.

And today was different because today I could tell people that I had a migraine, not a bad headache.  And they respected that as a different kind of problem.  Not that my head hurt more or differently than it had a few weeks ago or last year.  Even though my head has hurt more than it did today.  Part of me knows that this is due to my access to health care and the credibility our society gives to doctors and that I should try to resist.  But today was different because people believed me when I told them the pain was bad.

And all of this is why, when the new doctor looked at me and said that my headaches sounded like migraines, I said, “Thank you.”  Thank you for believing me.  Because now other people do too.

Between Wednesday evening and Monday morning–just under 5 days, I spent time in two states, two time zones, and five cities participating in six events–one of them a multi-day experience.

Which is the long way of saying that the last few days have been busy.  Busy enough to have made this trip a decision.  A decision about how much pain I was willing to court and about how I want to live my life.

Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life.  I’d love to have both good health and the ability to pattern my life in the manner I want.  I don’t.  (And I would argue that none of us really do.)  I live in a body that will experience pain if I try to do too much.  I consider myself lucky to know about where that line lies.  And sometimes I choose to push and bring extra pain meds.  And sometimes I choose not to push and to be pain free.  There’s no magic formula.  I try to balance the life I want against what I expect the physical costs of extreme activity to be.

I’m still happy with the choice I made about those 114 hours of my life.  In exchange for a series of mild headaches, which are now over, I got to do several things which are important to me and which will and should enable me to do more similar things.

It was never my intention to stack these days and their events against my pain levels.  It just happened in response to a series of events beyond my control.  And, as I was unwilling to pull out of most of these commitments, I played the balance game.  (There was another commitment which was more optional and which I did not attend.)

Sleep is very important.  And I worked hard to make sure that I got enough.  But, and this may sound odd to some of you, it’s only been about a year and a half since my last surgery, a year and a couple of months since my last major medical procedure, and less than a year since The Headache miraculously ceased.  So my body has not been out of stress for very long.  A lot of my energy still goes toward healing and moving.  I don’t have a big reserve to lean on.  There was a time when I could have done a trip like this, unpacked, gotten a good night of sleep, and started playing catch-up.  And someday, I hope and trust, there will be again.  This time, in this season of my life, it took two good nights of sleep and the extra day in between.

Yesterday was became a Bad Day.  The day started with a nuisance to mild type of headache–bad enough for drugs, but otherwise manageable.  By the end of the day I was in medium-evil headache land.

(Of interest my headache pain scale does not include bad.  We start at nuisance (noticeable and maybe drugs), move up to mild (very noticeable, definitely drugs), next is medium (good drugs, slow thoughts, and please leave me alone), then there’s evil (good but inadequate drugs; decapitation and homicide begin to sound like reasonable options).)

Yesterday things weren’t evil unless I decided to do something crazy like move or be around food or noise or bright light.  I spent a good portion most of the afternoon and all of the evening laying down hoping the pain would go away.  And when I woke up this morning it was…better.

Not gone.  But no longer an evil vicious monster.  Today sounds still bother me and there’s some residual pain.  Food has not always been a good idea–particularly if it has a smell and is served in a loud room.  But I’ve eaten.  Today I can think like myself.  People have asked how I am and said, “today you look better.”   Today has been better.

Maybe tomorrow will be good.

My keychain looks different this week than it did last week.  And I’m not sure how I feel about that.  I know how I want to feel: happy, relieved, unconcerned.  But I’m not quite there yet.

After surgery#2 there was a period of time when I lived with adrenal insuffiency.  This meant I needed a mid-afternoon dose of corticosteriods.  So I started keeping that dose in keychain medication holder, because then it was easy to have with me.  After surgery #3, I bought another keychain like that so that I could keep pain medications with me.

At first it was just to keep up with normal post-operative pain.  And then the headaches started.  That was when I started keeping ibproufen and excedrin migraine in little bottles (they sell them in little tubes and I refill those) and my prescription pain relievers on  my key chain.  During The Headache this was necessity.  Without medication I couldn’t function.  Afterwards it was precaution.

Last week I took the keychain medication holder off of my keychain.

My headaches have been less frequent and less severe.  So I’m hoping that I will not need that level of medication.  But I’m still scared.  So the keychain with it’s medication is floating in my purse.  My unwillingness to be separated from pain medication tells me just how bad The Headache was.  I have a reason to be afraid of that kind of pain again.  I’ve lived with it once.

So, I’m still scared.  I am concerned about getting caught with a headache and without medication.  But I am also hopeful that when I next clean out my purse I might be willing to take out the prescription pain medications.

Just not today.  You see, I’m still recovering.

My doctor’s have settled on a favored theory about this headache.  Radiation treatment has, most likely, had the other effect of inflaming my third cranial nerve.  Treatment is fairly easy, another couple of pills each day, and will take affect soon, I hope.  This means that I also get to visit Nuerosurgeon #4 again this coming week.  Assuming they are right, and all I can say about that is this seems to make sense based on what I’ve learned about the third cranial nerve and that these doctors know a lot more about this stuff, this is good news.  I still have questions.  But mostly right now I feel a little lonely.  

I was in a new place one year for the anniversary of what was then my latest surgery and I didn’t know many people yet.  While talking about this with someone else, I was asked if that was an isolating factor.  My honest reply was that surgery itself was what was isolating.  

That’s how this feels too.  This is one more thing I’ll be able to talk about, explain, and become comfortable with.  But this is also one more thing that most people do not have the perspective to understand how it affects my life.  It is hard, nearly impossible, to explain what it is to live with things like a long medical history, regular MRI’s, and chronic health conditions.  This thrid cranial nerve problem is one more thing that will, in small, subtle, and real ways, isolate me.  

But at least my head should stop hurting.  Because that was painful and a little isolating too.

long after the last
“how are you”
the pain still lingers
long after the last
get well card
becomes clutter to be cleared
or the brightening flowers wither
I still move more slowly
or pause to consider
how much energy
this will take
For this road lasts
long after
I want it to

written 6-18-08

Last week I walked into my doctor’s office prepared to fight.  To say that something was wrong and insist on an effective method of treatment.  After all, headaches leave little outward sign.  I planned assertiveness, not unhelpful arguing.  My doctor looked at me and suddenly there were tests and phone calls to new and old doctors.  The good news:  prescription painkillers which actually stop the pain.

I left my doctor’s office after another MRI and with an appointment to go back to see First Neurosurgeon.  Despite all of my time in this world of doctors and images of my brain, this was new territory for me.  I didn’t know where my old landmarks are yet.  I didn’t know what to fear or anticipate.  The good news was that First Neurosurgeon didn’t see any of his problems (infection, hemorahaging, or regrowth).  The bad news is that my head still hurt and no one had a solution to this problem.

This week is phone tag with Nuerosurgeon #4 (who over-saw radiation treatment).  Next week is an appointment with my eye doctor (to address the double vision which is coming with the headache). 

I don’t know what will happen.  I don’t know what is wrong.  And all of my doctors are pointing me to new doctors.  Which is even less reassuring than “I don’t know”, or any of it’s variations.  I want an answer.  Mostly because I want the pain to go away.  Or be managed.  I want to stop seeing my world in blurry edges or doubles.  I want the headaches to stop keeping me from my life.  I want an answer.  I need an answer.  

I don’t know what is going to happen.  And I’m scared.

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