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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 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 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.

went well. Because of the distances involved, it was a 12 hour round trip. (About 4.5 hours there, 4.5 hours back, some time in the waiting room, a couple of stops for food and/or gas, it all adds up.)

The doctor I saw, radiation neurosurgeon, was as helpful as he could be. He doesn’t see anything on the latest MRI, which is good news. So he wants to keep my on some drugs to try and reduce what we believe to be the inflammation in my third cranial nerve. So, another couple of pills, plus some more pain pills, for another few weeks.  When pushed the doctor indicated about 50%/50% odds that this will be effective.

If this doesn’t work, and by work I mean makes the pain and double vision go away, it currently sounds like I’ll be expanding my list of doctors. For instance, visiting a neurologist may provide some other treatment methods than exploratory surgery to look for inflammation not visible on the MRI.  (Something I am NOT open to.)  

It went well.  It wasn’t the resounding, “Yes, this is the problem and here’s how we can address it” that I would like.   But I don’t feel stymied.  I feel like there are still options and is still hope that there will be an answer.  In the meantime, they upgraded the kind of pain pills they are willing to prescribe me.  (I’m not actually sure that’s a good thing….sure your pain is so bad, have better drugs…)

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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