Tag Archives: AAAAHHHHHHH

A Victory Inn is not victorious.

We got to our hotel near the headache clinic yesterday afternoon after a cheerful cab ride from a Michigan enthusiast and an incredibly painful flight. For me, everyone else seemed to think it was fine as they didn’t have an army of angry dwarves pounding into their cheekbone as the pressure changed.

We were delivered unto a very depressing looking hotel behind a depressing gas station with a sign that read “G oup ra e avl.”

Hmm.

Inside we were met by a brusque clerk who quickly gave us a room by the farthest back exit. Upon opening the door I discovered several things:

1. The wall paper and carpet were both peeling.

2. There were cigarette burns on the ceiling. Somehow.

3. All of the hotel hangers designed to be useless to steal because they disconnect from the hanging part when you remove them were stolen.

Then the clerk knocked on the door and told us the hot water was out but should be back tomorrow, OK?

Sigh.

We then discovered the wi-fi didn’t work.

Grr.

We went to dinner at Chili’s and were made better by a few of their lovely margaritas. Eventually we went back to the monstrosity to sleep. The next morning the clerk failed to call me for my requested wake up call, but luckily I had set my alarm so we made it to the clinic for my assessments.

They drew blood. I had an EEG, resulting in real globs of water soluble paste all over my head. I met with a doctor and a psychologist. I spent 9 hours being tested and questioned before being told I was being admitted to the hospital and to call after my MRI’s for admission instructions. Then we went back to the hotel, tired and hungry.

I turned the water on to take a shower. It was cold.

Grrrrrr.

I had huge globs of paste in my hair that had been there for 8 hours and it was really starting to hurt. I used a styrofoam cup to wash my hair out in the tub so I didn’t have to stand in the freezing cold water. As I did, the tub began to fill. I figured the stopper was set to on so I reached over to turn it to drain and the handle came off in my hand.

At this point, despite anger being a trigger for migraine, I was getting pretty angry.

I finished washing my hair and went to tell the clerk about the tub and complain about the water.
Me: The water is still cold.

Him: Yeah, it’ll be fixed tomorrow.
Me: I had to wash medical paste out of my hair with a cup on the edge of the tub and while I did, the bathtub handle came off in my hand.
Him: That’s okay, I’ll leave a note about that for maintenance.
Me: That’s okay?
Him: Yeah. Room 123 right?
Me: Deathglare.

Which is how we ended up in the Holiday Inn Express in Chelsea. It’s the most luxurious room I have ever stayed in. It is made of Unicorns farting rainbows made of smaller Unicorns.

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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.