bandaid on a bullet wound

Tags

chronic daily headache, chronic headache, chronic pain, debilitating, headache, headache diary, intractable, NDPH, new daily persistent headache, refractory

That’s how he described it.  Putting a bandaid on a bullet wound.  And it finally made sense.  I had to stop.  I’m hemorraghing at the brain.  Or at least it feels like it.  And taking away one little thing here or there just wasn’t going to do.

I took a medical withdrawal from graduate school today.  It was a hard day.  I can’t remember the last time I was unable to look people in the eye.  I don’t think I’ve ever had so many near strangers hand me a box of kleenex.  I’ve been crying so much my cheeks are red and puffy from the salt. 

I cry because of the pain.  I cry because of the disappointment.  I cry because I’m walking away from a dream.  I cry because I don’t know what I’m going to do next.  I cry because no one can help me no matter how much they care.  I cry because its getting worse.  I cry because I’m scared.

I had trouble typing today.  Only with my left hand.  I dropped my fork today.  Directly into my plate.  I nearly dropped a jar of fruit today.  And the lid went flying.  I dropped a cobalt blue ceramic bowl this weekend.  Slipped out of my hand, onto the floor and shattered.  I found myself shaking on Friday and a few other days too.  Only with my left hand. 

I’ve been agonizing over the decision to leave school for weeks.  I probably knew the whole time what had to be done.  I was just too proud, too stubborn, too in denial of how bad it is, to give into the matter.  I kept stalling, waiting for the break in the pain that used to come.  The break that would bring me from despair back up to just mildly jaded but ready to carry on with my life. 

There hasn’t been a break.  This is some of the  most intense pain I’ve experienced.  It’s sharp and all-encompassing.  It grabs me from the front of the skull, from the back of my skull, tears at me from behind my eyes.  It steals my speech,  it lowers my eyes, it absconds with my smile.  And the worst part, it stays.  For days.  For weeks.  For months.

I went to Chicago last week for work.  I knew this would be the last draw but I decided to tough it out anyway.  As soon as we got out of the car and into the hotel, I had to lay down.  After the morning sessions, I had to lay down.  After walking to lunch, I had to lay down.  After walking to a nearby event, I was the first to leave.  I came back to the hotel to laydown.  That was at 7:30pm.  But this is when I also realized it hurt worse to lie down. And at 11:00pm, I was sitting in bed still awake, sobbing from the pain. 

I also realized that I am no longer truly living my life.  I am only enduring it.  My life is short, painful bursts splattered in between the time where I can lie down.  So imagine my dismay that lying down is no longer a respite but a time of torturous pain in vain attempts to sleep.  Now I can add lack of sleep to my already over emotional state and the drowsiness from the headache meds for an invigorating pain-filled day of waiting to (not) sleep or lie down.

The same thing happened last night.  I watched an entire season of Weeds to distract myself from the pain.  I tried to lay down but it was unbearable.  I laid down at 2:22am.  That didn’t work.  Tears.  I tried to sleep sitting up.  Then it was 4:30am.  More tears.  I slept in and out for a couple of hours before I had to pull myself out of bed and start my day. 

My dog has stayed by my side through all this and I imagine him being fretful and concerned.  Mostly he’s just antsy because I don’t walk him enough.  And I feel bad about it naturally. 

Now that I’m off the books for awhile, I don’t know what I’ll do.  Maybe I’ll be a dog walker.  Maybe I’ll be a drug addict.  Maybe I’ll be a writer.  Maybe I’ll figure out how to live my life in a way that doesn’t feel like its killing me.

in vain

Tags

botox, chronic daily headache, chronic headache, chronic pain, injections, Mayo Clinic, NDPH, nuerologist

I’m going to refrain from using an image here.  If my language is not graphic enough, then lucky enough for the reader (not that there are any) that they do not have to imagine what its like to have multiple injections into your face and skull.  Sorry, I can’t help it.  If I have to suffer it, someone should know.  While I may have done this voluntarily, my reasons were not in vain. 

At least I hope not.  The doc said it would take 3-4 days for the Botox to set in.  I imagined a poison that would go to work, paralyzing my nerves immediately but I was asked to be patient.  I tried not to think about it too much but will admit to furrowing my brow on every trip to to the bathroom to see if the glorious effects could be detected. 

Last night I was suspicious but not sure.   I didn’t even think about it this morning until I had to sit down while I was brushing my teeth.  Who sits down while brushing their teeth?  Wow, I must be in a lot of pain.  And then I remembered, hmmm, haven’t checked those frown lines today.  And again, maybe something but not really.  No need to get my hopes up.  I went on about the day.

When I got home, walked the dog, made dinner and tried to be normal, I noticed I wasn’t feeling completely like death.  I checked it out after a potty break and sure enough those frown lines seems to have disappeared in the middle.  They were still there on the sides of my face but not in the middle.  Weird.  Really really weird.  But still felt like hell and I had four law briefs to read so I want back to it. 

I guess I wanted fireworks or the mind-altering numb that comes with a morphine drip but this was just nothing like I expected.  Physically, I can feel the difference in my face but not in my head.  My headache is not as severe as it has been the last two weeks.  I know I was on the uptick and I was due a break, but can I contribute it to the Botox? What about the long hot baths I’ve been taking and the twelve hour nights of sleep?  I know it sounds incredibly indulgent, but trust me you wouldn’t trade anything for this pain.  I’m not sold.  Going to see how I feel in the morning, how I feel in a week, and so on.

All I keep thinking is if I was a horse, they’d have shot me by now.

understandably so

Tags

botox, chonic pain, chronic headache, crippling, debilitating, headache, headache diary, Johns Hopkins, Mayo Clinic, neurotoxin, new daily persistent headache, pain

It’s been five years.  Five years and some change since I got a headache.  I don’t know where it came from.  I don’t know why it won’t go away.  I only know how long it’s decided to stay so far.  I didn’t have a great party to celebrate our anniversary together but I certainly dreaded its passing.  That’s just a miserable long time to have a headache. 

“I can’t even imagine what you are going through.”   It’s true, you can’t.  And not in a, oh please feel sorry for me kind of way.  No one could imagine what it’s like to live with such unrelenting, nagging debilitating pain.  I often think of people with arthritis, cancer, lupus and so on and I can see how they must suffer silently. 

I did the deed on Friday.  I got Botox.  I sat in a cozy armchair and let a doctor inject neurotoxins into my face.  The procedure was not as bad as I expected.  The anxiety dreams made it seem much worse than it turned out to be.  If you have headaches and you’ve had trigger point injections or nerve blocks, it is similar but not as awful.  If you have not had trigger point injections or nerve blocks, and you are considering, learn from my mistakes and get the anesthesia.  Make the best out of a bad situation.  Don’t be tough.  I’m always trying to be tough. 

The Botox is to take 3-4 days to settle in to working its poisonous magic…up to ten for some.  I haven’t had any swelling or soreness thankfully.  I’m trying not to think about it too much.  I don’t really believe I’ll wake up on Monday and I won’t be able to move my forehead and my headache will be gone.  But maybe it will help a little.  If it doesn’t help, if it has no effect, they are shipping me off to the Mayo Clinic or Cleveland or John Hopkins or some other luxury hospital resort for the chronically ill. 

If you cannot tell, I’m feeling rather beaten down by the headache.  I’ve never come this close to defeat.  I’ve given in many times, laid down for a few days, over-medicated, maybe sank too far into the depression.  But I’ve always come back.  I’ve always gotten past it.  I’ve gotten a break in the pain and I’ve been able to come back from it.  Now, the breaks are gone. 

I used to describe it like a roller coaster.  It hops small hills and lulls through valleys, ratchets slowly to the peak.  Then you scream all the way to the bottom.  You open your eyes and its over.  You are rolling slowly again.  The world comes into focus.  You breathe and move on. 

I always hated being on that roller coaster.  It was so unpredictable. You never knew when it was going to jerk, turn and start climbing up the inevitable hill to unbearable pain.  But now I’m at the top and there just doesn’t seem to be a way down.  There is no letting up.  There is no nauseating rush to the bottom.  The peak is the plateau and we keep going with no end in sight. 

The truth is I cannot see through the pain anymore and I’m afraid I’m going to have to give up.  I’m afraid I cannot keep up the pace. I cannot concentrate.  I cannot complete my schoolwork.  I cannot get things done at work.  I cannot see through the pain.  Literally.  I have trouble reading, driving, walking, talking, listening, sleeping.  It just hurts.  It hurts so much.  I can’t even laugh about it.  I can’t do it.

So what now?  Do I quit school?  Do I move home with my mother?  Do I wait to see what a whole team of specialists determine is the “primary” cause of my “secondary” headaches?  Do I keep shelling out thousands of dollars for medical treatments when I can hardly work?  Do I keep pretending that there is nothing wrong with me and try to live a full and productive life?  Or do I give up?  Do I even have a choice? 

I think this is the point you hear about, where you have to take control of your headaches.  The point where they start running your life, making reckless decisions for you while you sit on the sideline trying not to thow up.  In five years, though I have found nothing that makes me feel better, I do believe I’ve stayed in control of my life.  But I’m losing my grip.  

Before that happens, I’m trying to go back to the drawing board.  I’m trying to find a way to make this work.  I’m trying to live a life when I have no will left in me.  I want this degree.  I don’t want to quit.  But I don’t know if I can do it.  I would regret it for the rest of my life.  I can slow down but then it will take longer.  I will suffer for even more lengths of time.  I can go somewhere else, somewhere closer to home, go part-time, do it bit by bit, get some help with the day-to-day drudgery.  It is not my preference but it might get me to the goal. 

As I told my advisor the other day, I’m having some health problems, and its forcing me to make some choices I’d rather not make.  I know it’s not giving up and people keep telling me that but it sure feels that way.  I’m sick, right?  But its hard to explain to those around you when they’ve never seen you sick.  You might put your head down once in a while but you never speak of it, you never take a day off, you never say that you are in crippling pain and you just don’t want to go on anymore.  How could they understand? You haven’t let them. 

Compromise.  I suppose that’s a better way to think of it.  Never much liked those either.  But I’m trying.  I need to get through this and the current agenda is just too packed.  Its grueling even when you are not in mind-numbing pain everyday.  Doing it with is just inviting disaster.  So I’m trying to avert disaster.  I’m trying to avoid a crash.  I don’t want to breakdown.  I don’t want to just stop going on one morning when it all becomes impossible for me.

Heavy.  I know.  Luckily, no one really reads this blog.  Its downright depressing.  But its my life.  And I’m trying to find a way through it.

It’s All in Your Head

Tags

chronic daily headache, chronic pain, headache diary, intractable, new daily persistent headache, refractory, unrelenting

A friend posted something the other day, a recipe for cheerfulness or some such thing. The main point was not to gripe every single day about your pain, because no one wants to hear it. Slap a smile on your face and go on about your day. I get it. As hard as it is, I do it every single day. Most people I encounter would never know that I’m in severe pain more than 70% of the time. They may think I’m a miserable human being and I don’t smile enough, but they don’t know how bad it hurts.

That’s why I write. I need to let that pain out somewhere. But nobody wants to hear me groan. Regardless, even the most sympathetic ears have a hard time comprehending. It’s always the same “did you take something?” response? How do you reply that you have taken over 20 different somethings and none of them helped. It’s just too much information. You can’t tell the casual acquaintance about the meat grinder in your had or the lightning bolts flashing behind your eyes. It’s just not socially acceptable. We lie. I’m fine. We lie. I’m good. We lie.

Momentarily I am proud of myself. I am proud of myself for not giving up. I’ve made it through the first three months of a dual degree graduate program without missing a single class. Without turning in a single assignment late. Without backing out of hardly any obligations. I cleverly accomplished this by not making any unnecessary obligations! But I’m counting it. I’m getting decent grades. And I’m starting to enjoy myself. I’m starting to find my place. Most days I think someone is carving hieroglyphics into my head. Yet, I finally feel like I can do this.

intractable

Tags

botox, chronic daily headache, chronic pain, headache, headache diary, intractable, new daily persistent headache, primary headache disorder, refractory

After a long weekend of nothing but pain, I drug myself out of bed on Monday. I don’t know what I was thinking. Maybe that I could not lay there any longer. I got about an hour into my day and remembered why I don’t over-medicate. Pain killer. Muscle relaxer. Something else yellow or green…I can’t remember.

Sitting, listening, trying to comprehend. Pain escalating. Getting hot, nauseau takes over, I am officially ill. Once I assure myself I am not going to throw up in public, I head to the clinic. They have mercy on me and see me immediately.

Intractable. The doc says my headaches are intractable. Hey, has he been reading my blog? Either way, he sees I mean for real this time. He gives me a Toradol injection. And hooks me up to an oxygen tank. And I lay and practice my deep breathing for awhile. And then I lay there for what seemed like hours, curled in a ball on medical examining table in a freezing cold room on a perfectly sunny fall day and waited to feel better. But I didn’t.

The doctor offered a narcotics injection but I figured that would take me back to where I started that morning. And I didn’t have anyone to drive me home. So I skipped it. The doctor apologized and so did the nurse. They seemed to feel bad. I had to walk in and diminish their ability to do their jobs; to make me well. It always seems to end this way.

unremitting

Tags

botox, chronic daily headache, chronic pain, IV treatment for headaches, neurologist, new daily persistent headache, primary headache disorder, secondary headache disorder, trigger point injections

It’s been on my mind a lot lately. Botox. It’s the next in line treatment for the unremitting pain. This has been recommended to me before so I guess the third time is a charm. Now to see if my weakest ally, the insurance company will let me have a go at it. While most might balk at 30 point injections into their FACE, their neck, their scalp, I’m thinking at least these needles have the positve side effect of reducing wrinkles. Heck, I’m old hat at this needle stuff. Surgery in the summer and I’ve let docs stick needles into my face and scalp twice already this year. I’m really not resistant to the treatment but I am really unsure it will actually give me any relief from the demon called pain.

While I wait the requisite month or two for insurance approval, he offered the second in line therapy — IV treatments. Five days of IV treatments. Going to the hospital/doctor/lab five days in a rows, insert needle, inject drug. Five days. As fun as that sounds, I was really wondering if I had time for all that, I mean I still have 8am classes everyday, mountains of homework and gotta get those 20 hours in, too. How about 7am medical infusions? What a great way to start the day!! Who needs coffee when you’ve got a liquid anti-convulsant IV drip?

Sign me up, right? It’s tempting. And I actually mean that (aside from all the other sarcasm here). What if it did make me feel better? It’s weird that I’ve been sick so long I’m starting to crave the attention of medical professionals. The sympathetic nurse with the alcohol swabs and needles. The fastidious doctor with no guarantees who offers just less than eight minutes of his/her time. The receptionist who won’t show she’s annoyed that you can only schedule appointments on Friday mornings and after 4pm. And all those flourescent lights are perfect for headache patients! Maybe I’ll do it. But first I want to know the odds on the insurance actually anteing up for the Botox.

And now for the kicker. If it doesn’t work, the new doc wants to send me to one of those classy medical centers like the Mayo Clinic to see what’s really wrong with me. He is so convinced in the success of Botox for treating primary headache disorders, that if it doesn’t work, he assumes a secondary headache disorder and will send me packing to a world-class medical research facility. Man, news like that will really ruin your weekend.

As much as I’d like to discount this doctor, he is again the third doctor to suggest this course of action. First my primary M.D., then my neurologist and now another neurologist. After four years and no results, I guess I had it coming. As if a two hour drive to the nearest city wasn’t enough, maybe I should add airplane fare to my medical expenses. And as tough and pissed off as I sound, it’s had me crying all weekend. That and don’t forget the miserable, searing, unrelenting pain.

cancellation

Tags

chronic daily headache, chronic pain, headache, headache diary, new daily persistent headache

I woke up today like any other day with a headache. I thought I had the flu, I was on fire and cold all at the same time. I thought a shower would help shake off the yuck in my body. And I felt better. Except for the head. It hurt to wash my hair. It hurt to chew my breakfast. Every pounding of my foot just ripped through my skull. The pain on my way out the door was killer. It made my eyes droop, my jaw drop, my shoulders ache. No pounding. No throbbing. Just a deep tearing pain in my head. Moving from here to there often enough to jolt me from my concentration.

Its almost become transcendental.It’s nearly indescribable which is why I think I’m so compelled to write about it. How can there be words for something so intangible? If it was socially acceptable, I would let out gutteral cries, profanities, the most awful of noises. But I can’t.

Instead I carry on straight faced, occassionally even attempting a smile. What must people think? Is she miserable? Is she depressed? She never says much. She never smiles. She also looks so unhappy. It’s pain, my friends. Pure, unadulterated pain. Lately, in a new place, I find it easier to keep to myself. I don’t want to share my misery. I’ve had to tell a few people. Those at work, my professors, an occassional classmate. It just seems like I put up a wall if I tell them but even if I don’t tell, the wall of pain still stands between us.

I’ve cancelled a few times though not as often as I used to. I am trying my very hardest not to miss class, not to miss work, not to give in to the pain. By 9am though all I can think about is “I need to lay down” or “I can’t wait to sleep” or “When is this day going to end?”. The days have been eternal. I’m no stranger to twelve hour days but these are intense.

My doctor’s office called today to cancel the appointment I made three months ago. I’m thinking of trying the clinic here instead of trying to squeeze it in on short visits home. I worry about the additional medical bills piling on to my substantial indebtedness to the medical community. At the same time, how do I go without care? I’m not taking any medicines currently. Yet, there is always this small hope, even thought “I’ve tried everything” that something out there might give me some relief. Still, it seems foolish to hope.

barometric pressure

Tags

barometric pressure, chronic daily headache, headache, new daily persistent headache, pain, rain

People have suggested to me that my headaches are affected by the barometric pressure. I always thought it was a joke. But I’ve heard doctors suggest the same, read articles about it in the NHF journals and saw it on the internet, so it must be true. True enought that I find myself checking the weather to find out how s#%&ty my week is going to be.

Sure enough, the thickness of the clouds seems to reverberate with the pressure in my head. Not sinus pressure, not like that. More just a pain that slices into my inner core. Its deadening. It takes my breath away. It brings my feet out from under me. It drops my head to the table in sheer defeat.

Its been raining for a week where I live. And sure enough the amount of hours I’ve spent lying prone in a dark room have corresponded. The weather gods are up there sharpening their knives and they saw through my subconscious with each inch that falls. Please, please make it stop….make it stop…make it stop.

refractory me

Tags

chronic daily headache, chronic pain, headache, headache diary, neurologist, primary headache disorder, refractory, unrelenting, unremitting

Definition of REFRACTORY

1

: resisting control or authority : stubborn, unmanageable

2

a : resistant to treatment or cure <a refractory lesion> (or say, headache)

 

Source:Merriam-Webster Dictionary

 

Who?  I’m a person who suffers from new daily persistent headache. I have had a headache since December 2007.  I’m a graduate student, a women, a fighter, a lover and maybe even a crazy person.

 

Why? Honestly.  I just feel like I have something to say.  I suffer every day.  I don’t like to complain but I have to get this out of me.  Journals are nice but when you feel like you need to scream, they just won’t do.  I reasoned blogging is like screaming to millions of people.  Like when a tree falls in the woods.  Perhaps no one hears it but I bet the tree is relieved.  I like words and I will share some here. 

 

Where?  The pain is everywhere I go so in this sense it does not matter where I am. 

 

What?  Ramblings, rages, retreats, reckless necessity, randomness, recollections and requisite recantings.   

 

Disclosure: I start this blog under the influence of Tramadol which is not mind-altering but may be mind-numbing.

 

Missed the Boat

Tags

chronic daily headache, chronic pain, headache, headache diary, new daily persistent headache, refractory

Today I was supposed to be on a boat. Ok, so maybe its cloudy, rainy, almost cold. Who cares? I was ready to say, “I’m on a boat.”

But no. Instead I was in my bed. All day long. I know this will sound nice and indeed it sounded nice to me this morning but at 4:30pm, still in bed, staying in bed all day long had lost its luster.

My head was bursting. The kind of pain where it hurts just to move. The daily “its time to get up” bark from my dog was unbearable.I almost fell over in the shower. Combing my hair was torture. Shooting pains in my neck. In my neck? Really. An odd sensation of sharp, burning pain in my neck whenever I turn my head. Ouch. There was no way I was getting on a boat.

So this led me to start thinking of all the occasions I’ve missed due to the unrelenting headache. Winery trips. Weddings. Parties. Showers. School. Work. My 27th year of life. The closest I’ve come to being on a boat today is feeling seasick and dizzy from trying to blog while on Tramadol. Just not the same.