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I had a doctor’s appointment this past week.  Which is not remarkable in and of itself.  I have a lot of doctor’s and they all require a visit from time to time.  But this doctor offered to take me off one of my medications, to see if I really needed it.

Medically, she is right.  There is a decent chance that I could wean off the meds without a return of the pain, the constant pain, and life would be fine.  Actually, life would be slightly better.  Less pain, less medication.

And yet, and yet, I said no.

I’ve talked here before about how hard it is to be healthy after you’ve been sick, and as I walked out of the doctor’s office I wondered how much of my no was about that.

Most of my no was about other things though.  I’ve only been pain free for about a year.  And I’ve spent most of that year re-learning how to tell when I’m in pain.  (I’m well aware of the depths of the problems in that statement.)  So I don’t trust myself to know if the pain did return if I stopped taking the medication.  I occasionally miss an evening dose and I notice that the next day.  The medication has few side effects, so staying on it has few negatives.

Someday, I hope, I look nervously forward too, I will get to say yes to this offer.  Despite how hard it is psychologically.  Despite how much easier it is to keep saying no.  Despite how scary it sounds.  Despite the open question of whether or not I can actually live, pain free, with out the meds.

But for now, for a lot of reasons, I’m staying on them.  One more pill.  It’s the right choice.  For me.  For this season.  For however long this season lasts.

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.

This has been my week.  It has been bad.  But I am lucky.  I have friends who listen and care.  I have health insurance.  I have doctors.  I have medications.

no matter how often I come back here
it is always a shock–
when I move my head,
when I breathe,
when I stand,
when I read,
when I live
and it doesn’t hurt;
when the elephants who
had taken to tangoing in my head,
along with the ice pick lodged
two inches from my right eye,
and the echoes that make
every noise repeating and loud,
when all have left,
no matter how often I come back here
it is always a miracle.

written 7-21-10

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.

Among everything else I’ve been up to in the past month or two, I’ve added a doctor to my collection.  With my life seeming stable for the near future and a neurologist in town who was taking new patients, it seemed like a good time to deal with my headaches.

I could go on with a long list of accolades for my neurologist.  Fabulous doctor.  And when I said, “This is my reality.”  She took me seriously.  I was diagnosed with migraines.  And I left her office with new prescriptions.

I take more pills every day now.  But they work.  They work so well that they stopped the headaches I didn’t know I was still having every day.  They haven’t (yet) stopped every headache I have.  There’s a good chance that they won’t.  I know that and my doctor knows that.

I have new pills, which I don’t like, but yesterday, today, and tomorrow are better.

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.

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