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Wednesday was my 18th MRI. (I went back and counted, so I’m pretty sure I’m right.) 18 MRIs in 10 years. Nearly 2 a year.

3 brain surgeries.  1 radiation treatment.  1 other surgery. (I never talked about it here because, unlike my other surgeries where we’ve spent time discussing the unlikely possibilities of death, paralysis, and blindness, this time we talked about the unlikely chance of a blood transfusion.  I’m fine, it helped with what it was suppose to help with.)  Migraines.  And countless orders for bloodwork, medicine scripts, and pills.

10 years.

It is unfair.  It is burdensome.  It is invasive.  It is hard to explain to other people.

It is my life.  It is all woven into my life to the point where I no longer really remember “before” except that it was.  It is all woven into my life so that my life is so much more, and always connected.

18 MRIs, 10 years, 3 surgeries.

 

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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.

I still have good days and bad days.  (I suspect I always will.)  The difference between good and bad and better and worse is often one of degrees.  Today my head hurts slightly.  Today I will always know where the excedrin bottle is.  Today I will barely leave the couch.  Today I will only get out of bed.  And similar scales.  Most of my days, thankfully, land on the better and good end of the scale.  I know what it’s like when days tend to land on the other end of the scale.  When the “good” days are the days when you only have to take two naps, one pain pill, can think.   And I know that there are days in the middle days where I don’t want to or don’t have time to or am just sick of talking about being sick and so need to pass as healthy,  as having a good day.  I need to act healthy.  Despite the pain in my head, or my back, or my leg, or whatever.

There’s another time I do this.  I do this after surgery as I become healthy.  It’s actually an important skill then.  Because if I don’t start acting healthy, despite wanting to sit on the couch and sleep, despite better knowing how to be sick, I’ll never really believe that I am healthy.  I’ll never discover that I can make it down the street or up the stairs or do whatever or go where ever.

In the church I think we get caught thinking we are still sick.  Or to put in the terms we use, still dysfunctional, still caught in a prior generation’s way of thinking, still caught up in the way we’ve always done things.  We forget that the world has moved and that we, sometimes, oftentimes, haven’t.  And as this reality catches up with us, we want to take things slow.  To stay on the couch and have committee meetings, to read books, to commission studies, when what we need to do, sometimes, oftentimes, is try getting up and moving across the room.

But sometimes we need to act healthy.  Today.  Even when it seems impossible to believe that it could be true.  Even when our heads hurt or our muscles ache and the people coming to church aren’t the people we thought would come or aren’t coming at all.  Because sometimes when we act healthy we discover that we are better off than we thought we were.  Today.

I’m writing this on Ash Wednesday.  This is important to know.

It’s the pause in my day between my services and I’m taking a chance to eat something and work on my vestry agenda for tomorrow.  Season 2 of The West Wing is playing in the background because I love Aaron Sorkin and I know it well enough that I can work and listen.  And in the middle of all of this I’m still bothered by my sermon.

It’s a good sermon.  I make good points.  Gospel points.  I believe everything I say.  Still, it’s under my skin.  And then a character on the show, a one-off character so I don’t know his name, says, “My entire life doesn’t have to be about this one thing.”  And I think but “sometimes it is.”

Sometimes my entire life is about being a priest.  (Try dating me, being my friend for very long and you’ll learn this lesson.)  Sometimes my entire life is about having had brain surgery and my health issues.  Listen to my sermon.  (Except, of course, you can’t.  I’m sorry.)  Hear me talk about mortality and death.  I learned those lessons the hard way.  The way of pain and suffering and blood work and tests.  Of having looked into the certain knowledge that death was close.  Sometimes my life is informed by one aspect of my life so completely it is as if my entire life is about that one thing.

All of that often makes me a better person and a better priest.  But this week, this week between MRI #17 and the doctor’s appointment, this week when my mortality is a little closer to me, I wonder if my knowledge of my mortality has bleed too close to my priesthood.  Because if my schedule were different, my sermon would be different.  It’s a good sermon.  I just wonder.  I wonder what other words I would have found, would have said.  What other part of the Gospel I would have proclaimed.

“Remember that you are dust and to dust you shall return.”

Last week I went in for my yearly MRI.  My 17th MRI.  In the last 9 years.

Neurosurgeons like to have you do MRI’s for at least 5 years after they remove a tumor from your head.  And I’ve only ever made 3 years….

Every MRI has the potential for great post-teen but still angst ridden writing, and I haven’t done that.  Instead I’ve been caught up balancing my own (inevitable) stress with the also inevitable stress that these put my family through.

My tumors have only presented with symptoms once.  The need for every other surgery has been identified by my yearly MRI.  This, plus some other family history, makes my family a little extra jumpy when I have an MRI, or blood work, or go see a doctor.  Which in turn makes me a little jumpier.

This year I told my doctors they could schedule anything except during the same week as Ash Wednesday.  And I asked for an anti-anxiety pill during the scan.  MRI’s aren’t bad.  I mean they are loud, long, and boring, but they aren’t bad.  It’s me.  It’s that I’ve had to do 17 of these over 9 years.  It’s that this could mean nothing but an annoying hour or so, or it could mean surgery and forever of recovery.  It’s that this never used to happen.

And that whatever my doctor says in a few more days, I’ll be back next year.

I am fine.  Mostly.  Sort of.  (The rest of the post should explain the qualifiers.)

I’m coming to the end of two weeks of vacation, the first vacation I’ve taken in a year.  (Yes, all yelling about self-care can be saved.  I am perfectly capable of self-berating as I overwork.  I multi-task like that.)

I’d known I was getting a little close to the wire.  One of the things chronic illness has taught me is self monitoring.  My patience had been running low; my general energy was low; my sermons weren’t what they should be; my snarky side was trying to surface at the wrong moments.  I knew that.  And the soonest I could reasonably schedule my own vacation to start was two weeks ago.

I had big plans for the vacation I thought I might take 5 months ago.  For the vacation I actually scheduled, for the vacation I actually took, I planned to tackle a few projects around the house, spend some more time with the dog, and read.  I also slept.  I slept a lot.  I slept 9-12 a night.  I got the projects done (they weren’t that hard).  I cleaned.  The dog will still tell you that he is woefully neglected, but that’s his story 5 seconds after he’s finished a treat.  I’ve done some reading; I’ve done more TV watching, I’ll confess.  I’ve also gotten to some sewing projects.

What I haven’t gotten to: writing for this blog, two other possible writing projects that I’m thinking about, some heavier reading, seeing friends or family (this isn’t the loss it sounds like–I’ll take advantage of my flexible schedule and office and get see them).  I just haven’ t had the energy and I haven’t tried to make myself.  Because I know that I needed to sleep and be rested.  Because I know that there’s a lot waiting for me in a couple of days.  Among everything else, there are some vacation things that need to get done.

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.

I made an extra doctor’s visit this year.  I don’t like the doctors.  Truthfully, I don’t know many people who do, but the thought of a doctor’s office has been enough to keep me dealing with pretty severe pain for an extra six months rather than schedule an appointment.  (True story, not one of my better self-care moments.)  So when I say I made an extra doctor’s visit this year, please hear that statement with some impact.

One of my medications had failed.  Spectacularly failed.  Kept me down and from work for the better part of a week failed.  Massive pain.  Barely scraping together the work I did do.  Not acceptable.  So once I’d pulled my head far enough away from the Ibuprofen bottle, the largely ineffective Ibuprofen bottle, and managed to think clearly enough to figure out which doctor to call, I scheduled an appointment.  (And then the pain kept being bad enough that I wound up in Urgent Care just to make sure I wasn’t crazy and they gave me some better drugs.  Bless them.  So I actually saw doctors two extra times.)

I like this doctor.  (I don’t go back to any medical professional I don’t like.)  We went over my symptoms and their progression and talked pain scale.  And then she started to talk about a diagnosis and changed my medication. So far it’s mostly working.

It’s not a great diagnosis, but it’s something I’ve been waiting six years to hear.  It took three years before the symptoms were bad enough to get me to a doctor’s (this includes that six-month period I mention above).  And then three years while the first round of medications worked without a proper diagnosis.

But you can’t go to a doctor with “I think there’s more to my now symptom-less problem.”  So after six years I have a diagnosis.  I can start asking for treatments and medications that will be effective.   I can stop wondering if I’m crazy, if this will fail, guessing about a cloud of mystery.

Because now I know.  Now my doctors know.  Now we can do something.  This is the power of  a diagnosis.

Today is World Suicide Day.

Most people don’t know those of us who have tried or thought about trying suicide.  Most people know about the people who have successfully committed suicided.

I’ve been suicidal.  Most recently, after my second surgery.  I think I’ve mentioned before that that surgery was the toughest one to survive.   And I almost didn’t.  I can still remember sitting in my dorm room looking at the phone and my yellow ribbon card.  I sat there for what would have been minutes but seemed like forever working up the courage, the strength, to reach out.  To fulfill the promise I’d made after the last time I’d been suicidal.  That if this ever happened again I would get help.

Eventually I made the phone call to the campus psych services.  They got me into an appointment, they told me that I was depressed, they put me on my first round of anti-depressants.  They saved my life.

I am once again, and probably for the rest of my life, taking anti-depressants.  (Search this blog for pills.  The anti-depressants are the red pills.)  By now I think I have been through enough trauma that I will be taking anti-depressants for the rest of my life.  Which makes me glad that I live in a country with healthcare, that I have a job with benefits, that I have a background that tells me it’s okay to ask for this kind of help.  It was worth it.  It was harder than anyone who has never been suicidal can understand.

My suicide stories are longer.  But I don’t, this week, have the energy to tell all of them.  So let me say this in closing.

I am glad to be alive.  Making that phone call, living up to the promise I had made to myself, was one of the hardest things I have ever done.

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

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