Monthly Archives: February 2014

Another Fucking Growth Opportunity, despair, health, Love, Trigeminal neuralgia

The shadowboxer *amended

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I have been tentatively diagnosed with trigeminal nueralgia. It’s a clinical diagnosis, meaning they won’t know for sure until we rule out everything else, but the signs are pointing to this baby as the likely cause of my issues.

Trigeminal neuralgia is traditionally called the suicide disease because of it’s recurring, unpredictable, and intense episodes of explosive pain.  I have decided to rename it “The shadowboxer”.

When I was just out of high school I got a job working at the Wendy’s on Colfax and Emerson.  Each day during my shift this homeless man would walk past the windows in our “sunroom”.  He was always boxing an invisible opponent, which on east Colfax isn’t the most uncommon sight ever.  However, I would see this guy get hit back by his invisible opponent.  His head would snap back, he would buckle at the stomach, sometimes he would even get knocked down.  Every time he would stand, reposition into fighting stance, and keep on punching.

Well now I have an invisible opponent of my own.  I get hit or kicked in the left side of my face several times a day.  The rest of the day I spend feeling as though my face has a headache.  My left cheek always hurts, my left eyebrow is sore to the touch.  I have decided I will also continue to stand up, reposition into a fighting stance, and keep on punching.  Hence the name change.

I never know when these boxing matches are going to occur.  The wind can set them off, sounds can set them off, trying to sleep on the left side of my face can set them off, chewing can set them off, etc.

To be frank, I am terrified to leave my house.  I don’t want to become an agoraphobe, but the thought of being out and about when one of these matches comes on is scary.  I am embarrassed by them, they turn me from a smiley fun person into a tense curled up ball of pain and misery.  They make me cry.  Sometimes they hurt enough I have to bite onto something to stop from screaming.  So imagine my horror at the thought of doing this at a party, during the class I teach, while picking my children up from school, etc.  I don’t cry in front of people easily.  I hate crying in front of people.

So, how did this all come about?  Why the sudden change from headaches to the Shadowboxer?  It turns out that people with trigeminal neuralgia can be misdiagnosed as having migraines for a long time before the traditional symptoms manifest.  It also turns out that trauma can cause an onset of otherwise dormant symptoms.  Well, three or four weeks ago I fell on the ice and hit my head.  Three or four weeks ago a tow truck ran a red light and T-boned my car.  I have no medical training so I don’t know if that is why I am suddenly where I am, but I can tell you those events coincide with the pain timeline.

How can you help?  Please don’t offer me advice, unless you have trigeminal neuralgia.  Please do offer me love.  Please let me know if you have somewhere I can retreat to at an event you are inviting me to, if an attack occurs so I don’t have to worry about embarrassing myself and everyone else at your party.  Please reach out to me, visit me, send me notes.  If I cry when we are talking, please just let me cry.  Please don’t tell me how much better it’s going to be.

Trigeminal neuralgia has been described as one of the most painful and debilitating diseases in existence. I got to have that conversation in the medical office when your doctor looks at you, puts on his “Bad News” face, and says “I can try medication and if that doesn’t work, surgery, but if this indeed what you have, it’s a lifelong, debilitating condition”.  So I am not really wandering around feeling like things are heading towards better.

What I need is the ability to express that.  I understand the first knee jerk reaction to someone saying life sucks is the sun will come out tomorrow.  I get it.  It’s a reaction I initially have too.  However, a good friend of mine long ago taught me better things to say.  Here are some examples, if you ever find yourself at the opposite end of anyone facing anything like this, like me.

1.  That sucks, I’m here for you.

2.  I love you.

3. I am sorry things are so hard for you right now, let me know if you need anything and I will try to help.

4.  Hug

5.  I will totally come hang out with you where you are the most comfortable.  I will not be mad at you if you can’t make it to my parties etc.

6. If you want to spend the day watching movies in bed, I will come do it with you.

7.  I will not be embarrassed if you have an attack while we are out.  I will try to get you somewhere you feel safe and I will wait it out with you. Fuck everyone else in the room, they can just deal.

Also Please bitch to me about the things that are going wrong in your life.  I don’t care if you think I am worse off, I care about you and I want to be a person you can talk to. 

Believe me, “well that sucks” is exactly what you need to hear sometimes.  I am working my ass off to get better, to stay cheerful, to keep going.  In the morning I start the day with Pink’s Try, because I do just have to get up and try.  Every day.  When it hurts too much I curl up with my mom or dad or cat and I cry.  I am doing everything I can to get better physically and to make it through this mentally.

But I need you guys.  I do.  I just can’t always go to you, call you, make contact with you.  So please continue to love me even as I seem to disappear from your lives.  It’s not my intent to leave you.  I just have a really scary new opponent in my ring and my match is far from over.

Love, Motherhood, Otter

Buttons come and Buttons go

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He didn’t notice I couldn’t play.

He didn’t see the effort it took to be there, with him, to be awake and present.

He simply said “I’m sorry you hurt” then went to his bed and brought over the little lap desk he uses for his computer.  He set it up on the bed, grabbed his backpack and favorite books and settled in, saying “Let’s do my homework mommy”.

We read first, because he likes to tackle the hard part first. He read Pete the Cat and his Four Groovy Buttons and we giggled. He made up a song for the chorus, and we sang it together. At the end he read, Buttons come and buttons go, but Pete just kept singing his song. Then he turned to me and said “Pete the cat is right mom.  Sometime stuff comes and sometimes it goes, but we should keep singing our song.”

After homework we put away the desk and backpack, pencils and books, and he got ready for bed.

He didn’t know how much of my day I spent feeling as though I was letting him down.  He doesn’t know how easily he showed me how not to.  His desire was to do his homework with me, and he built a way to do it, regardless of what limitations I had.

At bedtime he held my hand in his and I sat with him while he shifted from side to side, his poor little head still uncomfortable from his ear infection.  So I took an ultra soft pillow, laid his head on it in my arms and held him until he fell asleep. I held him while he settled in, began to breathe deeply, and drifted off.  His hand never let go of mine.

Buttons come and buttons go but my little guy just keeps singing his song.

health, Migraine

Dude, why’d you have to kick me in the face?

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There is a new door in my own personal heath game of Let’s Make A Deal!  While Door Number One held migraines behind it, and Door Number Two had cluster headaches lurking, this week’s visitor behind Door Number Three is Trigeminal Neuralgia. (Which I originally remembered as Tribal Gemini Neurosis, a mnemonic device I used simply so I could remember enough to find it on the Googles later.)

So, TGN is my new potential havoc wrecking friend, like the frat boy you hate in college movies because he is always smashing things up or annihilating your chances with the sensitive hot cheerleader types.  It turns out that TGN manifests a lot like Bruce Lee kicking you in the face.  It can be set off by wind blowing on your cheek, turning over to sleep on your favorite side at night, and seemingly anything else under the sun.

I will be reading, walking, shopping, sitting, doing whatever and then BLAMMO! Bruce mothercussing Lee has come out of nowhere and slammed his well trained foot into my tragic left cheek bone.  I won’t lie, this makes me cry.  Usually I try to laugh pain off, you know, make jokes about gnomes cutting my guts open with teeny little knives but there is no time for joke making when Bruce Lee kicks you in the face.  When Bruce Lee kicks you in the face, you cry.  Unless you are a cyborg.  Then you just disintegrate him with your violent red laser beam eyes.

So what is TGN? Well if you are really interested you can take a look at this fascinating interactive 3-D map of a human brain.   If you click on number 12 it will cause what appears to be an alpine brain crampon light up, I think it’s supposed to be a nerve, but it looks more like a glow in the dark hiking crampon to me. It will then switch positions to show you it is actually some sort of space aged light gun, like Han Solo would have carried. (Ok, brain stem and nerve, but don’t tell me you can’t see the laser gun.)  Then, once you are done ogling the amazing spaced age brain weaponry, you can navigate around the rest of the site to learn that “Trigeminal Neuralgia is universally acknowledged as one the most painful afflictions known to adults and affects thousands of Americans each year.”  So far, after spending half an hour on the website, that is all I have learned  about TGN.

If you get past the panic inducing fact that apparently you may have just won the pain lottery you can read on to discover that the guy behind this website has resolved it in 5000 patients (It doesn’t mention how many patients he has had, so I don’t know what that means from a chances regarding my recovery standpoint) and that he does so by endoscopic vascular decompression.

…  That sounds complicated and wordy? I wonder what he means?…

Apparently the treatment for TGN is to make a small dime sized whole behind the ear, then a 2.7-millimeter endoscope is inserted into the head.  The cranial nerves and vessels are identified and all things going wrong with it are repaired, slowly without butchering the brain.  The dura is closed, the bone piece is repositioned and the 3-centimeter incision is re-approximated.  In fact, if you want to see the animations or the videos, go ahead!  I know they had me screaming silently inside my pounding head for a while.

Now, if only one of the several docs I am trying to work with would let me know I definitely don’t need to have my head opened in any way because I have something else entirely, that would be great.  Until then, I will be over in this corner here, holding my knees, rocking back and forth, and eating too many M&M’s.