Back to life, back to reality.

Dealwiththis

That’s how the doctor’s edict is feeling these days.  I am running from the morning until the evening just trying to live a normal life.  I am job hunting, working, cleaning, reading, mending, parenting, seeing doctors, and eating like a normal person.  So far it appears that I can live a moderately normal life, even if I am really excited when bedtime arrives at ten.

In one week I start the new medication to handle the nerve pain.  Until then it’s reset my circadian rhythms to see if it helps make the headaches go away.

I have to say I am at least distracted from them by doing.  I managed law school with migraines and I always thought it was because my brain just compartmentalized the pain into a tiny corner and focused on Evidence.  I think the past few years there has been less of an ability to compartmentalize.  My hope is a regular schedule and a non-coma inducing treatment will result in me once again being able to kick ass.

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Fake it ’til you make it.

That is basically my new medical plan.  For now at least.  It turns out the fancy drugs they gave me to assist in fighting off the shadowboxer caused suicidal ideation.  Long term use of opiates does the same thing for me, so I am used to randomly being ready to hang up the towel when my brain chemistry is altered by various medications.

So I called my doctor and used the magic words.  “Dear Doctor So and So, I want to drop a piano on my head. Please advise”.  I had an appointment the next morning where he took me off all my currents medications and started me on all new ones.  He also ordered the following:

Go to sleep at the same time every night.

Wake up at the same time every day.

Eat breakfast, lunch, and dinner at about the same time every day.

Exercise every day.

Work at the same time every day.

He basically ordered a “Fake it ’til you make it” prescription.  I started it yesterday.  It was grueling.  I wanted to fall asleep at noon, so instead I spent two hours cleaning.  I ended up going to bed at ten.  Ten took forever to get here.

So, today I woke up to get the kids to school. Stayed up after seeing them off, made myself eat a healthy breakfast, and am now sitting down to work.  I assume someday this routine will reset my circadian rythyms and seem more natural, but for now, it feels a little like water boarding.  I keep forcing myself to keep doing stuff until it’s time to go to bed. 

 

Haiku Friday

Don’t leave me she said

as though reading in my face

the deep pain I hide.

Promise me she said

I need you to stay with me

You are strong enough.

I know it hurts mom

But you can do anything

You can fight this thing.

Promise me she said

promise me you will wake up

you will fight and win.

Promise me each day

you will keep pushing forward

you will grit your teeth.

You will not give up

If tired take the time to rest

If saddened cry.

Whatever you do

promise me you’ll stay with me

you are my best friend.

 

 

 

 

 

The shadowboxer *amended

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.

Buttons come and Buttons go

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.

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.