Archive for the ‘The Crazy’ Category

I know you’re tired of hearing about my pain and worries and neuroses. I really do.

I know my real life friends are and I DEFINITELY know twitter is.

I’ve used this blog as my free therapy for a while now. For the past 120 pain filled days this has been where I turned to get it all out of my head. Where I have extracted the thoughts from my mind and tried to make sense of them. Where I have said the things I can’t say aloud, and admited the things that are sometimes too difficult to admit to anyone else.

I have used this blog in a way I probably shouldn’t. Deep down, I know that it’s not normal to be upset as often as I am. I know it’s not okay to always feel distraught. I know that hopelessness is not a good state of being. I know that what I’m doing now to try and deal with my life and emotions is not cutting it. I know.

I know I probably need to do something about it.

I just…

I can’t.

I don’t know why. I know I should, I know I need it, and deep down, I suspect it would help. But I still can’t bring myself to make that phone call. To tell a receptionist that I need to schedule an appointment with a therapist. To call and tell yet another person that something else is wrong with me.

To admit to not being normal again.

I encourage others to seek help when they feel the way I feel. When they feel like there’s no future that isn’t full of fear and pain and unhappiness. When they feel like there’s no way out. When they think about how much easier life might be if their plane crashed to the ground instead of safely delivering them back to a life that they can’t face. I don’t look down on anyone else for getting help.

But I hold myself to some ridiculous double standard. I can’t do it.

I want to be me again. I want to live a life without pain. I want to live a life without constant tears and breakdowns. I want to find joy in normal life and happiness in the life I have. I want to rejoice in small victories instead of worrying about the next battle.

But I just don’t know if I’m ready to take the steps that get me there.

I fear I might never be.

On Monday my mom, dad and husband will be walking me into a hospital.

The last time this happened, was November 27th, 2007, the day I had brain surgery.

I’m glad my family is coming for the cisternogram, I’m glad for the support, but I cannot deny that the situation scares the shit out of me. It reminds me of the surgery I had, of the days of pain and fear and endless retching that followed. It reminds me of feeling completely helpless.

And, more than anything else, it reminds me that there’s an excellent chance that I’ll be facing a similar surgery soon.

I can’t hardly wrap my mind around it. I don’t want to have another brain surgery.

And yet, at the same time, I’m so afraid that this test will show absolutely nothing. That after 16 weeks of headaches, we’ll be completely without ideas, solutions or help.

It’s hard to straddle this line. This line of wanting something fixable to be wrong, but being completely terrified at how we’ll have to fix it. It just feels like an entirely no-win situation. And as much as I want to run for my life and get away from it, days keep passing, time keeps moving and the appointment keeps getting closer and closer.

I’m scared. Of what this test might show. I’m scared of what this test might not show.

And most of all, I’m afraid of what comes next.

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For the latest on Anissa, check here. She is fighting like we knew she would and now we have to wait and see. I think that Anissa would probably appreciate how many people have had a glass of wine or a tranquilizer in her honor (because, dude, we’re trying to cope). There’s also a button on the right where you can donate and help Anissa’s family with the costs of her care. And most importantly, don’t stop praying. She needs us now as much as ever.

After 3 hours of sleep, which was halted by indescribable head pain, an exam that I can only hope to have passed, and an afternoon of classes that served only to remind me how little I knew, I lost it.

The tears poured from my eyes like water from a faucet. Every time I regained my composure and found the steady rhythm of my breath, the sobs came back and the tears returned.

For 3 hours I fought a losing battle with my emotions.

For 3 hours my face was a riverbed of tears, my living room covered in tissues.

My mind, a mess.

I wish I could better describe what happened today, but I’m not ready yet, I don’t have the words yet.

I am broken. And it will take time to put me back together.

And until then, I lie here, cracked and teary eyed. Not knowing how to take the next step.

Not knowing if the next step should be taken at all.

Remember when you were a child and you used to spin around and around until the whole world spun around? All the colors blurred, your eyes lost focus and when you stopped, you felt like you were still spinning. It felt like freedom.

Now it feels like being trapped. Now it feels like being out of sorts all the time.

That’s the way my life feels right now. Blurry. Out of focus and control. Dizzying.

I did not do well on my test today. I truly didn’t and I really don’t want to talk about it (don’t tell me I did fine, I didn’t, and I know it). I have another quiz tomorrow, a paper due Thursday, another paper due Monday and another exam next Thursday.

It feels impossible. I don’t know if I can do it. I don’t know if I want to.

It feels like the world is spinning off without me.

It feels like I might not be able to find solid ground again.

It feels like I might fall.

And I’m afraid that I might want to.

I don’t feel well.

I don’t have the swine flu (unless the media REALLY exaggerated how severe it is), but I do have a low fever, an ugly cough and from that cough an extra dose of head pain. Because I needed that.

And most importantly, this has made me into a whiny, cry-y mess.

Yesterday I went to school in the morning, which was a terrible idea. I got up at 5:45 and by the time I got on the train at 6:30 realized what a monumental mistake I made. But then I looked at the train schedule and realized that the earliest I could go home was on an 11:20 train, but only if I made the 11:00 shuttle.

I made it through library training from 8-10, I did the practice patient interview at 10:30 and then I ran (another TERRIBLE decision) and caught the 11:00 bus and subsequently the 11:20 train.

I’ve had a lot of miserable train rides, but that was the worst. I had chills so badly that I was noticeably shaking. My headache was worse than it had ever been before, ever. I mean literally, it was the worst headache I’ve ever had (when you cough, you increase your intracranial pressure, and increasing mine (even if I don’t have the pseudotumor) is hard on my brain) and I just wanted to go to sleep.

And of course they added a stop on my route (the fair is in town?) so it took even longer to get home. I was home by 12:30 and fell into bed without taking off anything but my shoes. I slept like a rock until 3:30. I felt better when I got up, but not good. I did some work (from bed) and went to bed. And slept until 10:30, which, as God is my witness, is the latest I remember sleeping ever. I think I ate like 500 calories yesterday at best, I just don’t feel like eating anything. Even cake doesn’t sound good.

Yes, the was the earth coming to a screeching halt.

And I’ve been lying in bed all day and trying to decide whether or not to go to the big football game today. Slappy was stuck at work (because staying home from work when sick is what REASONABLE people do) for 34 hours and in the end, we just shouldn’t be at the game. For both our sakes. And I know that. And yet, I’m a weepy mess. It’s a fucking football game. Not a championship game, just a game. But my rational side seems to be pushed down by this low grade fever and I’m struggling to rise above it.

How ridiculous do you have to be to cry over a football game? I say VERY.

So I’m sitting on my couch (Slappy is asleep in bed), sipping tea, watching tv and studying.

And feeling sorry for myself. And maybe crying. Definitely crying.

I know. I thought I couldn’t outdo the wrong bus event. But, it’s me we’re talking about and at least in terms of public humiliation, I did.

Monday morning, my first morning of grad school, started off well. I got up at the ass crack of dawn, got to the train station and waited for my 6:08 train. I boarded and began eating my breakfast. I assume I’m not really supposed to eat on the train, but there are no signs indicating such and plenty of people do it. And frankly, I’m getting up at 5:40 so I just don’t have the time to fool around with things like breakfast.

So I ate my muffin (which, p.s. the recipe for these muffins is up here and they are AWESOME) and got out my baggy of grapes. Okay, frozen grapes. I love love love frozen grapes and I’ve been eating them as a part of my breakfast for weeks now. I have a grape infatuation.

I ate a few grapes and then started nodding off. It was early. I didn’t sleep all that well (more about why another day) and just as I really started grasping at unconsciousness, I felt something. In fact, I felt a lot of things. I felt my entire bag of grapes spill on the ground. And then start rolling.

And rolling and rolling.

I got most of them, but when I got off the train, I spotted one down the stairs at the back wall. I didn’t pick it up. I just couldn’t.

And I know what you’re thinking. This doesn’t sound all that bad, does it? That’s because this wasn’t the really embarrassing part. This was the warm up.

At the end of the day I had like 3 minutes to buy a ticket for my train home and a friend was waiting for me. I had my debit card out and ready. I decided to buy a 10 trip pass because it just seemed wise. I put all my information in and then inserted my debit card.

The screen said “card not accepted” and offered me a choice to continue. So I did. And I tried my card again. Same error message. I knew I wasn’t out of funds, so I assumed it didn’t take mastercard, so I grabbed a Visa. I stuck it in and pulled it back out quickly (that’s what she said) and again, “card not accepted.”

So I tried my very last credit card 3 times and was just about to burst into tears as a HUGE line had formed behind me when I realized my error. I was putting my card in upside down. UPSIDE DOWN.

I tried to be as quick as possible about putting it in correctly and getting my ticket, but apparently, there were enough people that avoiding a scene was impossible. The man behind me, obviously not noticing how red my ears had already turned decided to SHOUT at the top of his lungs, “Oh look, isn’t it amazing how well it works when you put it in correctly? That’s like a miracle! Good luck finding your train. I think you’ll need it.”

I died a little inside.

I ignored him, got my ticket validated and walked to my train, red with a combination of sheer embarrassment and anger.

And my brand new friend watched the whole thing. So now every time I say that I know how to do something, she asks me if I’m sure. Because those debit cards? They are TRICKY.

Okay, maybe not ALL of you.

Yesterday a dear friend of mine linked an article on Facebook and I think that it has profoundly impacted my opinion of the human race.  Because some of you are fucking stupid.  I’m sorry, but you are.

“One poll question indicative of how difficult it is to gain public understanding on a complicated issue asked if respondents thought the government should ‘stay out of Medicare,’ something inherently impossible. 39% said yes.”

Oh. my. God.

Keeping the government out of Medicare, a FEDERALLY RUN PROGRAM (hey, Federal means run by the national government.  Just FYI), would be REALLY difficult to do, I imagine.  But hey, if that’s what y’all want, then why the hell not?  Maybe we SHOULD see what would happen when the system burns itself to the ground.  Yes.  That would be SO much more reasonable than involving government in your health care.  OF COURSE.

But wait, there’s more.  At the end of the article, there’s a post-script.

“The poll also finds that only 62 percent of respondents believe that President Obama was born in America. Of the 38 percent who either don’t believe or are unsure, some think he was born in Indonesia, Kenya, the Philippines, or France.”

Okay, I’m just going to put this one out there.  Does it seem curious that 61% of people polled knew that the government ran Medicare and 62% know that Obama was born in the United States?  It’s almost like 38-39% of the people surveyed were uneducated fucking stupid.

I’m not even done.

“Six percent of the total poll respondents also don’t think Hawaii is a U.S. state.”

…

I don’t know how to deal with that sentence.  I mean, do they not think Hawaii is a state because they don’t like it?  (Those Hawaiians are unAmerican hippies.  I declare them terrorists foreigners.)  Or, is it because they are STUPID?  Seriously.  Come on.  Hawaii?  Really?

There you have it.  Please understand if I say that I’m still a little hesitant to believe all of the “educated” opinions about health care reform.  I think some of you are confusing educated with stupid.

If you follow me on twitter, you probably have some idea where I’m going with some of this.

This morning I got up much earlier than I wanted to on my last day of vacation and drove out to the student health center.  The goal of the day was to check in with a physician to make sure that I wasn’t having a stroke.  And, of course, to get a referral to a neurologist.

I arrived 45 minutes early (seriously Los Angeles traffic, you and your unpredictability can suck it) and thankfully they let me in early.  The doctor (who was gorgeous, but not nearly as gorgeous as my live-in physician) asked a few questions and as soon as I said the word Chiari he was done.  I believe his exact words were, “whoa, we don’t treat that here.  How about a referral?”

So basically I drove 30 miles, one way, to get a referral.  Which really, is fine.  Except that when I called the neurology office to make an appointment, the referral hadn’t actually been sent.  So I have to go back tomorrow.  I really shouldn’t be surprised by this, and yet, I am.

I went home and lazed around the house for several hours.  When Slappy got home from his 33 straight hours in the NICU, I fed him (not literally.  I mean, I provided him with food.  He has hands.) and tucked him into bed (yes, we’re gag-ably cute.).  As I was leaving the room, I ran into the new desk chair mat.  You know, the thick plastic kind with all the spikes?  That kind.  Ran into it with my right foot.

And I fell to the floor.  Considering the pain, I expected that half my foot would be missing when I finally looked at my foot.  But to my surprise, there was nothing.  Hardly even any blood.  (I might have even uttered something to the effect of, for all that pain, I should get a war wound).  I went into the bathroom to apply a bandaid and realized that, holy crap, about 80% of one of my toenails was NO LONGER ATTACHED.

And then I died.

Seriously y’all.  That shit HURTS.  I couldn’t bear to pull the whole thing off (it looks like a loose tooth still barely attached) so I trimmed it and band-aided it.  In case you wondered, being married to a doctor who is grossed out by toenails is WORTHLESS.  It’s now bled through like 3 band-aids and throbs whenever it’s not elevated.  And it looks CUTE too.

But, on the upside, this totally answers the question of whether I should I wear flip flops or tennis shoes to my first day of grad school.  Because, I’d rather amputate my toe with a chainsaw, with no anesthesia, in my wedding dress, in front of a large audience, in a pool of acid, than put a shoe on.

Or, you know, something slightly less melodramatic.  Whatever.

I recently stumbled across a letter to those who do not have chronic diseases, which attempts to explain the unwritten rules of the lives of those who live in pain.  I nodded vigorously along with parts and shook my head with others.  And since this headache is in no hurry to evacuate the area, it seemed like a good time to write my own rules.

Things you should know about me, in regards to being totally physically jacked up.

1.  I hate the labels.  I have enough diagnoses that I need a second sheet on my medical forms, but if you ask me what’s wrong, I’ll tell you it’s a “neurological problem.”  It’s not that I’m embarrassed or in denial, it’s that it’s easier for me to talk about it that way.  I will never refer to it as a disability because of the things that word does to my psyche.  More power to those who can accept the label, but I’m not one of them.  Please don’t call me disabled or I might “accidentally” call you an asshole.

2.  I do not strive for sympathy.  Sympathy makes me wildly uncomfortable.  In real life, I rarely bitch to anyone other than my husband (he’s just so damn lucky he doesn’t even know it) about my pain.  Sympathy sends me straight to a pity party and those are almost never constructive.  Unless there’s cake.  So basically, don’t offer sympathy if it doesn’t come with cake.

3.  I have a headache just about every day.  If I don’t mention it, don’t assume it’s because it isn’t there, it is.  If I don’t mention it, assume I don’t want to talk about it.  I’ll never be offended if you ask me how I feel, there’s absolutely nothing wrong with that.  But, nothing makes me feel more like a faker than when someone indicates that because I didn’t mention the pain to them that clearly it isn’t that bad.  That’s an assumption.  And you know what they say about assuming- it’ll get you called an asshole.

4.  This neurological problem of mine is largely invisible.  I have a scar, but only if you look closely (I’m going to try to capture a picture of it for you soonish).  I have slightly limited neck mobility, but frankly you’d only notice that if you were a physical therapist.  Just because I don’t look like shit doesn’t mean I feel well.  If I do look like shit, assume that I’m REALLY suffering.  And for the love of God, DON’T TELL ME.  I know I look like shit.  I do not need confirmation.

5.  Just because I’m out of the house or I’m busy baking or even exercising, doesn’t mean I’m not in pain.  Please understand that if I find myself blissfully out of pain, I will tell everyone I’ve ever met.  Ever.  Because those days are very few and far between and they are glorious.

6.  Some days I can do a lot.  Some days I can barely stand up.  Some days I shouldn’t stand up but do.  I know you’re worried about me, but you have to trust my judgement.  If I say I can do it, assume I can.

7.  If I do go out when I probably shouldn’t, don’t rub my stupidity or your ability to predict problems in my face.  Sometimes it’s worth extra pain to enjoy something that I shouldn’t.  It sounds crazy to cause myself pain, but sometimes living with pain is better than not really living at all.

8.  Some days I really CAN’T do anything.  Please don’t roll your eyes at me when I say I’m in too much pain to do something.  I know some of you will never believe me or attempt to understand.  You’ve had headaches before and it didn’t mean you had to miss out on life.  All I can say is that we’re different people, and to imply that I’m a sissy is like implying that you are an asshole.

9.  I know it’s inconvenient when I cancel at the last minute.  I know it sucks when plans are blown to bits.  I know because I experience it too.  I feel guilty as all hell when I have to back out, but know that I will always do my very best to make it up to you.  I’m not a flake, but some days I am a prisoner to my pain.  I’d rather be with you any day.

10.  You are welcome and encouraged to suggest treatments that might work.  But you cannot be offended when I tell you it doesn’t work.  I’ve been in a state of almost constant headache for a year now.  I’ve tried just about every drug on the market.  I’ve tried alternative medicine.  I’ve tried different pillows, sleeping with my head elevated, sleeping flat, massages and a plethora of other things.  I have not tried acupuncture because I can’t afford it.  I hope to try it some day, but that won’t be today.  So when I say I’ve tried it, I’m not brushing off your suggestion.  I’m just telling you that I totally thought of it first.

11.  Don’t tell me that I shouldn’t have had surgery.  This one drives me CRAZY.  That point is completely irrelevant.  Since time travel has yet to be perfected, I can’t do anything about it.  And though the surgery didn’t give me the life cure that I wanted and is most likely responsible for permanent nerve damage in my hand, it did give me 8 months of my life.  8 blissful months of near normalcy.

12.  Don’t judge me for taking pills.  I have prescriptions for anxiety (Klonopin), nausea (Zofran and Phenergan) and for dizziness (Meclizine).  They were given to me by a doctor, one whose arm I didn’t twist to get them.  I take them because some days I NEED them.  Some days I cannot function without them.  I hate being bound to my pill bottles, but I am.  And it is more difficult when you judge me for it.

13.  If I answer “I don’t know” to your question, don’t assume I’m holding out on you.  I really don’t know what’s next.  I really don’t know why this is happening.  I really don’t know anything but what’s going on in my life.

14.  Even with diagnoses, prescriptions and bad days, I am still me.  Always.  Pain doesn’t define me, but it has changed me.  And it’s up to you to decide if you can or want to deal with the person I am now.  I understand how complicated things get and I just hope that you can still see me somewhere in this mess.

15.  I still love cake.  A lot.  It is ALWAYS encouraged and appreciated.

I came across an article on CNN the other day and have been chewing over it in my mind, trying to come up with something not mean to say.  I’ve got nothing.

This woman, Trina Thompson, is suing her college career services for not getting her a job and for the distress it has caused her.  She graduated with a 2.7 gpa and is complaining that those with a 4.0 are getting better service.  Or as she puts it, so very eloquently and illiterately, “They favor more toward students that got a 4.0.”

Seriously?  SERIOUSLY?  GAH.

Is it at all possible that those with a 4.0 are easier to find jobs for?  Is it perhaps that those with a 4.0 are not getting better service, but that they are qualified for more jobs?  Perhaps students like Thompson whose attendance is “good” and gpa is “all right” are simply not as attractive in the field she’s looking in?

Or, wait for it, is it possible that the economy is shitty?  Apparently that degree did not involve any reading of the news or paying attention to reality.

No, CLEARLY it is the career services office that is to blame.

Perhaps my favorite part of this is the length of time that poor Trina has been searching, hopelessly for a job.  You see, she graduated in May.  Of 2009.  She’s been looking for a job for 3 whole months.  WOE. IS. HER.

And clearly she should be given back her entire tuition amount because obviously that college degree did her absolutely no good.  Apparently not getting a job within 3 months renders her degree useless and reimbursement is the most logical choice.  Forgive me, but this sounds like a double shot of entitlement with a laziness chaser.  A degree does not guarantee you a job.  Consider the hundreds of teachers who were laid off this year because of the economy.  Should they sue their universities?

Thompson is also encouraging others to sue their universities for not finding them jobs.  Now this is a SUPER idea.  Everytime an employer googles her name, this article and the reactions will show up.  And if I was an employer, I can’t imagine a more attractive job candidate than the one who has sued her college.  Because people who file one completely unreasonable frivolous law suit are certainly not likely to do it again if they were to be fired or laid off.

Not having a job is terrible, truly.  I can only imagine.  But expecting your college career center to find you one in 3 months, in this economic setting and then suing them when they don’t is despicable.

Stories like this one that make me embarrassed to be of this generation.

(p.s. yes, my head still hurts like hell, no I don’t really want to talk about it anymore.  Except on twitter.  Where my stream reads like one big gigantic whine fest)