All posts by Savvy Spoonie

I am an artist, writer, jeweler, and a Spoonie. Before becoming a Spoonie I was a very busy high achieving attorney and advocate bent on saving the world. Now I'm struggle to redefine my life to fit within my reduced energy level. Some days are better than others. I have fibromyalgia, trigeminal neuralgia, and chronic daily migraine.

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

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.

Please number your pain from one to ten.

Hmm.

How does one answer this question? One to ten compared to what?  Ten being birthing an 11 pound six ounce baby without meds? That would make almost anything else like a four, including partially hacking off my finger.  Ten being an infection in a molar, because that’s a feeling that makes you want to take a steak knife to your cheek and perform emergency surgery on yourself.

I think we need a new pain chart, that is perhaps more condition specific. For example, for a long time headache sufferer (mine have been old enough to drink for a while and just turned old enough to rent a car) perhaps the scale should be more like this:

1.  It’s a normal headache day.  There is a slight persistent presence in the back of your mind, like someone leaving the t.v. on the snow channel.  It’s irritating, but for the most part doesn’t interfere with your ability to live, work, play.

2.  Some asshole decided to turn the snow channel up. Apparently they thought it would be funny.  It takes a little more energy and effort on your part to keep living, working, playing.

3.  The snow channel has been turned down, but is now replaced with that annoying sounds the emergency broadcast system (EBS) sends out when they want you to know they are testing.  If you focus fairly hard, you can still push it to the back ground and live, work, and play.

4. Someone just gave you a noogie, while the EBS sound is playing in the background.  The place they affectionately noogied you is now throbbing a bit. Now you have to concentrate very hard to ignore both the background screech of the EBS and the throbbing in order to focus on work.  It is getting harder to multi-task at all, and likely any interruptions in work will result in your needing to recapture your flow.  Living and playing are starting to sound less possible, but you are reserving a bit of energy to play a board game, help with homework, cook dinner.

5.  Now in addition to all of the above, you just managed to stub your toe really hard against the stairs.  You somehow manage to do this every 30 minutes to an hour, and it takes a good ten minutes to get you back to a place where you can work, live, or play.  The EBS channel is now turned up loudly enough to make any other sound irritating, and the place that affectionate noogie happened is starting to feel like you were hit with a ball during dodge-ball.

6. You are now choosing between work, live, play.  You have no ability to handle sound or much light, dark sunglasses, turning off the lights in your room and dimming your monitor are now the only way you can really work.  Also, locking the door and turning off the phone and all IM mechanisms are the only way you are going to maintain any focus whatsoever.  Further, the asshole who is playing the EBS in the other room just turned it up higher.  You are still somehow banging your toe against the stair, but now you are managing to also slam your elbow intermittently into things.

7.  Tears. You want to cry. So you do.  You discover crying brings on heavy headache pain monster in way not even noogie man or the EBS sound has. So, distraction time.  What can you do that doesn’t require too much thought or concentration, can be done mostly in the dark, and ideally still manages to help you earn a living of some kind. (For you dirty birds, hooking is out, too much physical exertion is bad.)  You are now also trying to decide which delivery place you can afford that will resemble healthy food for your children or you are thankful you have taught them to make sandwiches and soup without setting the kitchen on fire.  You are no longer interested in eating anything.

8. Someone has walked in off the street, grabbed your head, and is now screaming full tilt into your face.  In addition, they are occasionally slamming it into the floor.  You can’t do anything but lie there and be screamed at.  You need help caring for other living beings in your house, because you are currently checked out.  If approached by a child or small pet, it is likely you will be able to stumble through helping with homework, making food, opening a can and dumping wet glop into a bowl.  However, unless you set alarms to remind you of the caring things that you need to do, you will forget all about it. (I set alarms) All lights and sounds you encounter during this process will make you instantly aware of how in bed buried under covers you should really be.

9.  Your whole head begins to feel like a bad 1950’s atom bomb experiment.  Movement likely makes you throw up.  You begin to consider filling the bathtub with blankets and pillows so you can be close to the toilet and turning out the lights forever.  Upon occasion, some invisible force stabs you in the eye or cheek or temple. You barely notice, because that previous background pain is no longer in the background.  Darkness is your friend.  You will either need silence, or distraction while you wait it out.

10.  Kill me. Please. However you want to, just make it stop.

So when I go to an ER and I am asked about the pain scale, I have a horrible time associating my pain with their chart.  For example, when I was in labor with Ollie and he was crowning, I remember leaving my body behind while my conscious mind tried to escape the pain.   I also remember trying to crawl away from my own vagina.  So was that a ten? An eleven? A feeling no chart can quantify?

When I had  an infected molar, I remember thinking it might be worse than labor, if for no other reason than it felt like my tooth was trying to give birth. Teeth are tiny and not at all designed for birth giving. Was that a ten?

A ten is supposed to be the worst pain you have ever felt.  I don’t think this really helps medical professionals evaluate the individual currently suffering before them.  The worst pain compared to what?  We have different experiences with the pain in our lives, pain you can live with but that sucks energy from you, like headaches, back pain, knee pain etc.  We have pain that is instant and incapacitating, then goes away fairly soon, like stubbing a toe, slamming your finger in a car door, etc.  We have pain that incapacitates you for hours, weeks, even years.

We need a new pain chart.  Something that allows you to tell your medical personnel that you, the patient, are at or nearing the end of your rope.  That your pain is bad enough that you dragged your migraine affected ass into an ER in the middle of the night to hang out in uncomfortable chairs for god knows how long until someone can ask you to repeat your history 37 times before they begin to treat you.

I get that ER staff have a hard job, and the staff I encountered last night were more caring and responsive than any of the doctors currently assigned to treat me on a daily basis. I would love to trade with the staff I had.

I just never know how to answer that question.  Worse, I am one of those smiling people who only like to let myself cry and clutch my head when no one is around, so  I will sit up and do my best to communicate and be kind while the doc is in the room, and then curl into a ball of head clutching sorrow when they leave.  In part, this is because it’s impossible to get any information out of a sobbing hysterical person, but in part it’s due to my upbringing.  We are make-doers.  We deal and smile, and try not to complain too much.

So I invite all your artists out there to turn my descriptions into a new pain chart for headaches.  Then we can start a campaign to add that chart to the current ER walls.  Maybe it will help them get a better, faster understanding, as to where a migraine sufferer is when they voluntarily enter a well lit, loud, and bustling environment for medical care.

An ode to an ancient force

When life began and I was young you were the bogey man.  You were the one to fear, the one to hide from, the one to avoid at all costs.  You were the enemy, the anti-thesis to all that I wanted, to all my loved ones wanted for me.

I grew.  I had children.  Then you became the one to fear with more intensity than I thought possible.  Your arrival had to be stopped at all costs.  You could never be allowed to meet my children.   Not inside, not outdoors, not accidentally, not at all.  They had to be kept from you forever with diligence and care.  The constant vigilance of the mother hiding her babies from your unpredictable  gaze.

How is it then that the thought of you now brings me peace?  You have been here since long before my birth, the ever present inevitability, the thing to fight off as long as possible.  You were supposed to be the one being no one ever wanted to meet.  I know there are some who rush to embrace your presence with open arms but I have never truly been numbered among them, too much of a desire to see what’s left to come I suppose.  Yet despite my desire to avoid you as long as possible, I find I no longer fear you.

In fact, sometimes now I dream of you.  At night you visit my sleep in different guises.  A mugger carrying a gun, a shark in the deep blue sea, a poisonous spider hidden in a sleeping bag, a peaceful sleep surrounded by hordes of loving great grandchildren.

When I dream of you, I don’t scream and shiver. I don’t toss and turn.  When I dream of you, I feel relief.  I feel peace.  I now know that when the two of us finally do meet, the pain at last, will end.

Who knew it was pain, and not death, that was the ultimate enemy?