It’s all in the presentation…

When I was in college I took a marketing class. In this class I learned that during the 1950’s a man invented a closed plastic mousetrap that would capture the mouse and kill it as effectively as the open wooden mousetrap, all without the mousekiller having to see or touch the mouse. This new and improved mousetrap was only a few cents more than the wooden trap.

He went out of business.

You see, despite being designed to be disposed of, the trap looked fancy enough that housewives across the U.S. were cleaning out the traps and reusing them, they looked to expensive to throw out. As cleaning out a dead mouse is revolting, they quickly went back to the wooden mouse trap we all pretty much use today.

It’s all in the presentation. If the marketers of that mousetrap had made it look less attractive, we could be using their trap today.

I have had a paradigm shift this week in the way I view my illness.

I have had migraines since I was 12. My family has felt sorry for me, my friends have commiserated. I have dealt. Then my trigeminal nueralgia came along and for the most part, we all treated it like a different version of the migraines. Something really unfortunate that I just have to cope with. Something without any real cause that needs medicating.

Until yesterday. A ha ha ha until yesterday.

Yesterday I met with a neurosurgeon. First of all he made it clear that I have a condition that is different from the migraines. It’s an operable condition. There is something physically wrong with my trigeminal nerve.

Then he explained my options. I can either have gamma radiation rays aimed at my brain to permanently disrupt the connection between my nerve receptor and my face, or I can have inpatient brain surgery where they cut a hole in my head and insert a pad between the blood vessel and my nerve. Both have a chance of causing permanent numbness ranging from occasional tingling to complete “I just had a root canal” numbness. Neither is a permanent fix. Apparently my TN will always come back. There is a third option but I am too young, I can burn the nerve off completely. There is a 100% chance of complete face numbness with that one.

Suddenly I wasn’t dealing with migraines any more. I wasn’t facing just migraine management and pain control. I was facing brain surgery and a physical nerve condition that has been treated for over 50 years but is still largely not understood. No one has any idea why the trigeminal nerve suddenly decides to fire randomly throughout the day and send shooting pain through my face. Some think it can be caused by age, some think head trauma, some are trying to link it to a specific virus, but as of now, they do not know.

All they do know is they can stop the shooting for a while by cutting open my head or shooting me full of gamma rays.

Okay. Gamma rays. It’s an 85% effectiveness rate versus a 95% effectiveness rate. There is a small chance I could be permanently numb, but I like to believe there is a small chance I become the incredible hulk. (Though Dan says I would be the credible hulk because I would back my claims up with citations.) Two days of feeling not so great and then I see if there is any improvement.

I can do the GammaKnife twice and the surgery once.  If those don’t work, I can burn the nerve.

Honestly, I am freaking out. Now I am crying and scared.

In 18 days I ship off to Michigan to be hospitalized for 24 hour in-patient treatment. I am looking at brain surgery. My cardiologist is testing for PFO ( a condition where a small hole in the heart is the cause of migraines.).

The presentation has changed. I can no longer believe I am simply managing a worsening condition. I now really feel as though I am falling apart.

Hope springs at me like a roaring tiger…

Hope is supposed to be a gentle feeling, but yesterday morning I got the call from the Michigan Head Pain Clinic telling me I fly out March 10th for my evaluation.  The hospital, somehow, is in network with my insurance.  A phone call to the insurance informed me they were already mid-process on approval for the hospital stay. This crazy aggressive in-patient headache and face pain treatment possibility has become a reality.

Hope leapt out at me like a ravenous tiger and began devouring all my stoicism and outward calm. I began to feel tears well up within me. Oceans of tears began flowing upward within me as the hope swelled into an unstoppable force of feeling. I might actually come out of this with a working treatment plan. I might not have to wait years to get this together. I might be OK sometime in the near future. I started shaking with the feelings coursing through me.

All of the sudden in the course of two hours I was on my way to leaving Colorado for a new place to see specialists I have never met for intensive evaluation and possible hospitalization with no end date in site.  I cried several times yesterday, even though doing so set off headaches. I am simultaneously terrified and hopeful. This clinic is supposed to be the place where they can try all the treatments, immediately, via IV and determine side effects and effectiveness without waiting months for ramp up. It’s also the place where they can teach me how to handle living with the disability through therapy, physical therapy, and more. It is the only clinic designed for migraine patients in the world, the only place where people like me, people who are considered “challenging” by every neurologist they see, have a real chance at symptom management. While I may be spending weeks at a hospital in the middle of Ann Arbor Michigan hooked up to an IV and being pumped full of god knows what, I am supposed to leave it with a treatment plan designed to give me a workable life.

I might have a workable life, sometime in the next two months. This nightmare could be under control.

Er my gerd…

So I took a leave of absence to manage my wildly slipping health right?  Well, I thought I would be resting while this happened. Maybe visit a doctor once a week and manage medications while making myself eat and exercise while I adjust to them.

HECK NO!

I have been to see one to two different doctors a day all week! Cardiologists, Neurologists, more Neurologists.  When I am not seeing doctors I am on the phone long distance with doctors I am paying plane fare to go see in March or I am filling out medical forms, calling the insurance company, and talking with medical receptionists scheduling the next round of doctor’s visits.

EEK!

It’s so confounding I bought a binder, with separate pocket folders, to organize what paperwork is coming from whom, so I can bring it all with me wherever I go.  Head-slam-desk. Before you know it I will be putting multi-colored tabs on the different receipts to file with my accountant.

Managing life with chronic illness requires savvy spoons