It's our time

Friday, October 31, 2008

I'm going to be brief so I can spend time with my mom, but I wanted to put up a quick post.

Today has blown in epic ways.

Like how everyone else at work got their 850 dollar surplus check (money I rather needed right now) and I didn't, because they screwed up my name on the check. And it was especially nice how the administrator dealing with the checks announced to the entire faculty that I would not be getting a check.

Or how my dad was getting better (pancreas CT was okay) except he's taken a turn for the worse and may have to have an artificial tube put in for feeding since he can't eat.

Or the call my mom just got from her neurologist letting her know that her recent ultrasound showed that one of her CAROTID arteries is at least 50-70% blocked. At 70% they have to go in and clean it out. Surgically. Just like my grandma had done a few short months before she died.

Just not really sure where to go with this. My money woes are insignificant, my parents' health woes are not.

We just really really need a win here.


Thursday, October 30, 2008

Today began as an average day by all accounts. An early morning for sports stuff, but uneventful (I didn't even run a camera light this morning like yesterday (frickity frick frick)).

And then...

My school laptop, where I do all my athletics entries from, died. Like, lost-its-hard-drive died. Like lost all our athletics information which is extremely important, died.

And then my car wouldn't start while I was at the parking lot at CVS. My lights have not been left on in over a week and it's not the battery (trust me, I am now well acquainted with the sound, or lack thereof, of a dead battery). Which is great because all I have more of than free time right now, is money.

And then my mom (who's in town, yay!) and I went out to a wonderful dinner, and now my lower intestinal tract is dying. I'm not sure if I ate something I was allergic to, or if my body is just throwing in the towel altogether, but it's not pretty. Or pleasant. Or unpainful.

And then I got an email from one of my athletes letting me know that she BROKE HER ANKLE today, less than 3 weeks before our state competition.

Oh, and I've caught a totally new cold. More snot, more coughing, more sore throat. It's AWESOME.

Today can SUCK IT.


Wednesday, October 29, 2008

So, before I get to the questions, I'll update you on the latest health/life information.

Met with ENT and the CT showed that 4 sinuses on the right side are completely occluded with snot, but not infected snot (definitely didn't realize you could have that much uninfected snot...). Also there's a weird growth on the opposite side, which might effect (affect? gah.) my breathing and is from my rather seriously deviated septum. Whatever, it's staying put.

So I have a ten day pulse of steroids (hello insomnia, how I've missed thee), a recommendation for copious quantities of Mucinex and a personal facial steamer thing. And of course, a follow up appointment, because seriously, this is the medical tour that never ends. He doesn't expect it to be resolved in 2 weeks, but wants to see anyways. If it's not any better, I have to have a nasal endoscopy, which sounds about as fun as, well, a nasal endoscopy, (I mean, really? do I even need to go there?) to check for polyps. But most importantly, he's sending the (fired) neurologist a letter to indicate that my sinuses are not the cause of my headaches (duh).

Whew. Also had 2 tests in the past 24 hours, both of which went pretty well.

And my husband had coffee with a woman who is not me, his mother or his sister. I'm trying to balance making him feel guilty enough, but not so guilty that he resents me for it. It's delicate and complicated, but fun.

Okay, now, to the main event, the answers to your burning questions.

What is your favorite pizza topping?
I love love love fresh tomatoes baked on top of my pizza, though I like vegetarian pizzas too. I'm a carnivore, but I do not care for meat on pizza.

If money were no object, what would you have done differently (if anything) at your wedding?
I really can't think of anything I'd do differently except maybe spell my name right on the marriage certificate because that is blossoming into a huge pain in my ass.

And would you have changed your honeymoon location?
Nope. I loved Maui. It was one of the most relaxing weeks of my life, which was exactly what I needed. I wouldn't change the honeymoon location, I'd just change the luggage location.

What is your favorite casual restaurant in New Orleans?
Crabby Jack's. It's owned by the same guy that owns Jacques-Imo's and the onion rings are freaking to die for.

In L.A.?
Oh, tough question. I love me some In-and-Out Burger, but I used to live by a great restaurant called Fatty's Cafe and they had dark chocolate fondue that was beyond description kinds of good.

Are the K&B's still open in New Orleans?
I have no idea. If they are, they're not walking distance from my house.

What's your favorite part of Mardi Gras?
The fact that I don't have to work during it. It's great fun, but I really prefer the vacation aspect.

What is your favorite childhood memory?
Jeezum. Probably swinging with my grandma in her backyard. She used to sing a song when we swung and I still remember the way it went. I try to sing it to my cousins whenever I have the chance, that way, even though they won't remember her, a little bit of her lives on.

Do you celebrate Christmas and if so...what do you want?
Yep. I want (and am getting!) a weekend trip to New York with Slappy. It's going to be great. I'm asking my mom for plane tickets to go home to see my family, because that's better than anything you can wrap up. Oh, and I have a new cousin due to be born right after Christmas. I love nothing more than newborn babies (um, perhaps that sounded creepy, I'm not going to steal him or anything.)

What is the best thing that I could possibly say to my dauther-in-law to be?
That you are so glad that your son met her. And mean it.

Do you want me to check around here for your soup?
Ha. I appreciate it, but I probably should try to incorporate fresh fruit and vegetables anyway. Maybe it's a sign.

If you could visit ANY person (famous or not) in history (living or dead) who would it be and why?
I feel like I'm in a speech contest. Um, probably any one of our Founding Fathers. I want to know what they really meant in the constitution, how they planned this country to be. And I'd sure like to see my grandparents again.

What's your favorite local-to-New Orleans dish?
I love love love good red beans and rice and jambalaya. I had no idea such goodness existed in such simplicity

What's your least favorite local dish?
Boiled Crawfish

What's the one thing you can't live without?
Oxygen. And Diet Coke.

Pretend you have time, what's your guilty pleasure?
I could play the original Super Mario Brothers 1, 2 or 3 over and over again. It's a sickness.

What's your favorite thing to bake?
Desserts. I don't care for cooking all that much, but I love to bake anything sweet

What's your favourite book? favourite movie?
I'm not sure I have either. I love trashy murder mystery novels. And movies, basically, as long as it's not a horror movie or a porn flick I'm content. I like good dramas (a la Shawshank Redemption and Mystic River)

Have you ever been to Canada?
Nope. Sad, eh?

What's your dream vacation?
Any vacation involving time that I shouldn't be spending on work or school. And if my husband could come, that'd be nice too (as long as he's not having coffee dates with random women the whole time.)

What is the specialty that Slappy is interested in?
(I got permission to disclose this) Pediatric Neurology

How are grad school apps going?

What are you doing for Halloween?
Going out to dinner with my mom and probably eating all the candy that's lying around for the precisely zero trick-or-treaters we get.

If you could say anything to your mother-in-law (and not get in trouble) what would it be?
Nothing. If I could never speak to her again, I'm pretty sure that'd be better than any zinger or speech I could ever create and deliver.

How come you say LA has all of the good fast food restaurants? You've got Raising Canes, Jack n the Box and Sonic! What's in LA that's better than that?
Seriously, In-and-Out Burger will always win. And there are precisely zero Jack in the Boxes here. Or at least I haven't found any yet. Maybe it's next door to the K&B?

Thanks, that was fun!

And long.

But mostly fun.

For me anyways.

In which you fix my writer's block

Tuesday, October 28, 2008

I have absolutely nothing profound to say, and I also have a test to study for, so finding the time to be creative is not an option. Nothing is new healthwise (the (hopefully) final ENT appointment is tomorrow afternoon) and I'm just feeling profoundly uncreative (and horrendously depressed that my soup appears to be discontinued).

So, now it's on your shoulders. Today (and tomorrow since I won't update this until after tomorrow's test) is Ask Katie Questions day! It's the opportunity to find out the things you've been curious about or the things you might have asked that I didn't see or respond to.

The only off-limits things are: my last name, Slappy's real name, my employer (or other work specifics) and any details that might allow my many (snort!) stalkers to find me.

The comments are open. The fate of this blog is in your hands.

(And honey, you are not permitted to participate in this activity because, as we both know, you do not play nice on the blog.)


Monday, October 27, 2008

So I went to the grocery store today. After eating Easy Mac for lunch/dinner for the past, um, 3 days, I decided it was time for some variety. I remember in college I virtually lived off of the Campbell's Soup-at-hand soups, my favorite being the Blended Vegetable Medley. I literally ate it like every single day, no exaggeration. And I haven't had it since graduation.

I went to one grocery store that had several varieties of the soup-at-hand, but no vegetable medley. I went next door to another grocery store (in the same parking lot), and found the same deal, except an even wider variety and this time an empty slot where the Vegetable Medley used to be. I tried CVS since I had to go there anyway, but again, no Vegetable Medley.

So I bought some kiwis instead. Hopefully they'll stave off the scurvy the Easy mac is dooming me to. Seems unlikely, but at least I tried.

For those that asked, life is pretty much the same. The head continues to be frustrating and relentless, but I'm getting used to it. Yesterday I was having trouble focusing my eyes, but that has mostly resolved today, which is good. I'm unbelievably tired and still rather lonely though the cat is doing her best to be perpetually in the way keep me company. Just one doctor's appointment this week, which will hopefully be the final ENT clearance after the results of my sinus CT is in.


Can this week be over? And can someone please stock my soup in the greater New Orleans area?


Sunday, October 26, 2008

I'm not feeling especially like writing today, but I did want to inform the masses that 2 days shy of 11 months after having the bottom third of my head shaved, I finally, truly have a normal haircut.

Like, with layers, but this time, the bottom layer is actually the longest, rather than the inverted mullet I've been rocking since last November.

Momentous indeed.

An open letter to Los Angeles

Friday, October 24, 2008

Dear Los Angeles,

Hi, it's Katie. Remember me? I lived on your border from 2001 to 2005 and then virtually every summer since. I think I left on pretty good terms, but it's come to my attention that we need to have some words.

Tomorrow morning I'm going to drop my husband off at the airport to fly away from me. To fly away from me, and to fly to you. I'm not going to lie, I'm not just sad, I'm also green with envy and all different kinds of jealous of you.

You get my husband for a month. You get to be there when he goes to his dream hospital and tries his dream job on for a month. You get to witness the triumphs and you'll be responsible for caring for him in the struggles. You hold all kinds of wonderment for him: our niece, his nephew, and much better fast food. So for a whole month he'll be with you and not with me.

You're kind of a bitch.

It's difficult because, on the one hand, I want you to be good to my husband, I really do. I want him to enjoy this rotation at this great hospital, make connections with people there and spend time with his family. I want him to feel comfortable and competent and I want him to learn all the things he can't/didn't/won't learn from reading books.

But at the same time, I want you to suck just a little bit because I need him to want to come back here. New Orleans is wonderful, but we don't have 1 year old nieces and 12 year old nephews. We don't have prestigious hospitals with great programs (at least in his field). We don't have In-and-Out burger or Baja Fresh, and thanks to Katrina, we're very low on Taco Bells.

So I think we just need to set some parameters. You can be filled with wonderful work experience, sane family time and better fast food, but you must also balance this with lots of traffic, smog and a profound lack of me. We can both win, but only if you cooperate.

More than anything else, above any selfish requests I might make, please be good to him and please keep him safe. He's pretty important to me.

With love,

Another theory bites the dust

Thursday, October 23, 2008

So I tried the biofeedback crap yesterday.

As it turns out, I kick ass at relaxing my neck muscles. Like literally, I'm awesome at it. Ironically, except when I start talking about my neurologist. The machine was set so that when I contracted my neck muscles it beeped. I kid you not, I could keep the damn thing quiet as a mouse while doing normal activities until I started talking about this doctor and then it would beep like crazy.

While thoroughly obnoxious, what it did show (aside from my disdain for my neurologist) is that my neck muscles are not in a constant state of contraction, and shockingly, my headaches are most likely not muscular.

In less than a week I'll have another doctor sign off indicating that something else (sinuses!) are not the cause of the headaches. (I don't want to talk about the possibilities of what is living in my sinuses, hopefully it's nothing, we'll know in a week).

So that's 2 theories down, and about 10 trillion to go. It's great to be making so much progress. I mean, really, in 5 weeks with a headache, who wouldn't be impressed with ruling out 2 causes? At this pace, we'll have it figured out sometime in the two or three decades.



Probably not.


Wednesday, October 22, 2008

I think I've written about it before, but for whatever reason, the administration at my work cannot remember my name.

In the 3 years I've worked there, I've been called all kinds of things and more than once, my name has been altogether forgotten (as in, someone tried to introduce me and had NO IDEA who I was. That was a highlight moment.)

Somehow the name that my most immediate boss has given me is Amy.

She calls me this all the time, including when I'm wearing a name tag that says "KATHRYN" in huge capital letters. I mean, it's seriously written right there, and yet, she still can't call me by the correct name. I haven't corrected her because she's my boss and there's just no way to do this that doesn't put us both in an awkward position. She did it in front of a group of my co-workers and none of them could figure out who she was talking to. I, of course, answered and now it's become a standing joke.

Fast forward to Monday morning, I walked in the front door and a different administrator was trying to get my attention. I don't know if he was flustered or something, but well, he called me Amy. And of course I responded (what is wrong with me?) Seriously, it's like a plague. This is my 3rd year working here, it seems like Katie shouldn't be that difficult to remember.

I think when I finally get my marriage license fixed (oh yes, it still says Kathnyn), I might just switch over to Amy. That's easy for them to spell, right? And really, perhaps it's time for a change?

(lest you thought I'd go a whole blog without mentioning my head, you have no such luck. I made an appointment with a different neurologist for November 24th. It seems light years away, but it's not that ridiculous for a new patient appointment. I also had my sinus CT today, so I get those results next week. And in the meantime, um, well, I guess I continue to hone my headache toleration skills. I wish I could say they're coming along nicely, but this headache is still kicking my ass on a regular basis.)

This, my friends, is called coming "Full Circle"

Tuesday, October 21, 2008

Oy. Good thing I didn't get my hopes up. I do have to give the neurologist some credit, she didn't run from the room after 5 minutes like usual, but I also need to give myself some credit because the only reason she didn't is because I peppered her incessantly with questions. She didn't answer 95% of them, but well, I tried.

When I was first diagnosed with chiari malformation, my neurologist, who was grossly undereducated on chiari, sent me to physical therapy because he decided it must have been a problem with my neck muscles. Definitely not from my brain hanging down too low (he had seen the MRI, he just didn't believe in symptomatic chiari). I went, it didn't help, and eventually I found a slightly more educated neurologist and neurosurgeon and they realized that muscular manipulations were not the key to the headaches. And that's how we ended up where we are today.

At this afternoon's apointment I asked about the tethered cord, she said she really didn't know. Her only experience is with those who have had symptoms their whole life (and by the way, should we start a sacral dimple club? I feel like there are enough people to have one).

I asked about increased intracranial pressure and she said that the other chiari patient she's seen who had a recurrence of headaches had very similar symptoms to mine and a lumbar puncture (the best way to check for this) was normal. And therefore, it's low on her list of possibilities. (Because, you know, every patient is exactly the same, therefore one test works for two people!)

I asked about the eye stuff (the nystagmus, the weird dilation when in the worst pain and the most recent shifting of my whole visual field) and she told me to see an eye doctor. Gah.

I asked about the headache clinic and she said that unless I want narcotics its unlikely to be hugely useful. It's better to be followed by a neurologist (which is ironic since she didn't ask me to make a follow up appointment, so I'm not actually being followed by a neurologist).

What she did give me was a prescription for biofeedback physical therapy. Twice a week for 2 months, to teach me how to relax my muscles. Because the only thing I have more of than pain is free time. And also, she and I even discussed that I did not have muscular pain, which is really what biofeedback is best for. Hey look, physical therapy for brain problems. My God, is April 2006. My time machine works!

It genuinely feels like I've been banging my head into a wall for the past month. I am running in circles and getting nowhere.

So tomorrow we seek a second opinion with a different local neurologist (as in call one, I don't actually have one scheduled. Sorry for the confusion). Because I'm not really sure what else I can do.

Medical stuff

Monday, October 20, 2008

So I'm just cutting to the chase. I do have a good story about how apparently my entire administration thinks my name is Amy, but I'll save that for another day when I need it.

Frankly, my head hurts a lot today.

I'm trying to come up with a list of questions for my neurologist tomorrow (aside from, can you refer me to the headache clinic or another neurologist who doesn't suck), but so far all I've been able to come up with is "how much does a lobotomy cost?" and that seems like it'll get me admitted to the hospital psych wing (ha, as if they still had one). But seriously.

There are many things I want to ask, but I don't want to seem like an internet research psycho. Though perhaps I am.

I have virtually every symptom of a problem called "Occult Tethered Cord" which is essentially a very mild form of spina bifida that many chiari patients have and which is often responsible for a lack of resolution of symptoms after decompression. The tethered cord causes the brain to continue to be pulled down (via the spinal cord), even when there's enough room.

The one sign I lacked, which is a physical marker on my lower spine, I have come to find out that I do have. Did you know it's hard to know whether you have a dimple on your lower back? And by lower back I really mean right above your butt crack? Because it is. Ah the joys of marriage. But how do I ask the doctor about this. Um, hi, so I found out that I have a dimple on my ass, wanna see it? Do you think that my spinal cord might be tethered? There's no way to broach that topic without sounding like a complete loon, which perhaps I need to stop worrying about so much.

I also want to ask about increased intracranial pressure because in a lot of chiari patients it doesn't show up on MRIs, but again, I could only seem more like an internet researcher if I actually brought my computer with me. I just don't know.

I want her to show me the MRI from February where I had the CSF leak and show me where it was and how it has resolved. I want her to prove to me that my duraplasty isn't leaking again. I want to know why my vision has gotten so very weird lately that I've had to pull my car over while driving so as to avoid accidents. I want answers to every question, but I also don't want to go in with a laundry list of complaints because I feel like I will only be causing myself harm to seem too organized or too prepared.

Where's the line between being your own advocate and being your own over-exaggerator? Or between informing yourself and becoming a raging hypochondriac?

If I had to answer, I'd say that pain of 30 days of headaches helps tip the scales in my favor, but my doctor has yet to see it that way. So I'm going back to the lobotomy idea. I think it's a solid one.

On Alternate Treatment

Saturday, October 18, 2008

I got a call this afternoon from the hospital reminding me that I have an appointment on Tuesday afternoon with my neurologist, who though dead to me, will be the key to getting the next referral I need. This was supposed to be the 6 weeks Topamax appointment, but instead it'll be the ha, while you were on vacation I stopped the crazy drugs. Now what bitch? Only probably without the bitch because I just can't do it in person. Also, my neurologist is so small I could probably crush her with one hand, so I'm afraid of being a bully. It's just too easy.

Here is the current plan in regards to this appointment:
-run screaming from neurologist's office after appointment unless she apologies profusely and gets her head out of her ass and starts making logical or helpful suggestions.
-ask pointed questions regarding intracranial pressure and tethered cord (more on this another time)
-ask for referral to the "Headache Clinic" where hopefully they have other remedies besides narcotics.

If none of those 3 things come to fruition, I will not be surprised even the tiniest littlest bit. Because I'm no longer setting expectations for appointments. If I go in assuming the worst, then I won't continue to come out disappointed. Everyone wins this way. I'm pretty sure you could put that on a t-shirt or stitch it on a pillow. I'm all about inspiration right now folks.

A number of you have asked about some alternate therapies, homeopathy stuff and well, no, I don't do it. I have good excuses for some of it, and a good part is that I've tried a lot in the past and I'm just too lazy to try it again.

I don't do chiropractors at all because truly, it's not really great for your body. I know a lot of people love them (my own family included) and I'm fine and dandy with you going, but I know too much about anatomy and physiology to go in and have things popped and kinked. I also happen to have extremely lax tendons and ligaments (so lax I once dislocated my shoulder throwing a hockey puck...), so having things popped by a chiropractor would likely result in a crazy large number of dislocations, which, let's face it, is just not really needed right now.

I also don't do acupuncture. The main reason is the cost and also a little with the sitting still, but mostly the cost. My health insurance does not cover alternative or eastern medicine and I can't pay out of pocket for this. I'm already trying to figure out how to pay for my allergy shots, I don't think I can pay for more needles.

I am proud to say that I am now taking a vitamin (better late than never?) every day and will give some thought to modifying my diet some to get rid of the unnecessary hormones. Or something. I'm also re-upping my gym membership in hopes that some exercise might do my body some good. Yoga might happen again, but not until after sports season ends because I can't commit to one day a week at all right now. And the last time I went to Yoga, I immediately started dying of bronchitis, so I don't know, it just feels jinxed for me.

Please don't take this as me telling you not to suggest things, because really, I've read every comment and carefully considered all the things you've suggested. It would be completely asinine for me to sit here and tell you that I'd do anything to stop the pain, but then shoot down all suggestions. So please, if you have ideas, I'll take them. As long as they don't fall into the category of "long walk off short cliff" or "suck it up already" because I already have an inbox FULL of those suggestions thankyouverymuch.


Friday, October 17, 2008

An email I got this week and I have been trying to ignore it, or find a rational way to respond to it, but considering that this is like the 12th email like this that I've received, I'm just going to address it head-on.



I wish you could read your blog from an outsider's perspective. Not only have you completely crossed a line from interesting to boring, you've also lost perspective about real life. You don't have it that bad, and at some point you'll look back and feel stupid for making such a big deal out of this.

I think you should change your header. How about, "Incessant Whining since September 2008"


(name removed)


I realize that I am boring some of you to tears with the whining. And part of it is my fault for not letting you in. For asking you to be understanding without first being forthcoming with the things that are going on in my life. I know that I don't have it worse than anyone else, but I know that I'm having a rough month. I'm not writing this because I want sympathy or because I want attention, but because I'm tired of people deciding things they don't know about. Please read, and if you don't want to follow this blog anymore, I won't be hurt, but I really don't need you to send me an email telling me why you're not reading. Or if you really feel the need to send me an email informing me that you're not reading, dial back the nasty. I may not have it worse than everyone else, but I sure as hell don't need extra crap from people on high horses.

Despite having a headache for 30 days, I've managed to work every week day except 1 full day and 2 half-days (one of which was for appointments not for sickness). I have worked somedays from 6am to well after 8pm. I have taught a crapload of information because our first quarter was condensed by that hurricane in September and I have made it through almost every day. Even ones like yesterday where I literally thought that I might not ever recover.

I am coaching a varsity sport that requires me to wake up between 4:45 and 5 at least 2 days a week for practices and then stay out until 9pm at least one, sometimes 2 nights a week for the sporting competitions.

I am taking 2 classes right now, which thankfully are going fairly well. But, they do take time and energy.

I am volunteering approximately 9 hours a week at a clinic in town. Unpaid, volunteering. Why you ask?

Grad school applications are almost due. So I'm also trying to fill out 30 some-odd applications and make myself sound like a good student while simultaneously wondering if I'm even going to be capable of completing this degree.

My husband is leaving a week from tomorrow for a full month in Los Angeles. A month. I am so proud of him for getting this rotation, but I am simultaneously so sad because, seriously? A month? Alone? I'm just sad. I'll get over it, we'll survive it, but I am sad now.

My father has been sick since mid-August. He has lost over 15% of his total body weight because he cannot eat anything larger than a bowl of oatmeal or a piece of toast without getting sick. He's had blood work, an endoscopy and an ultrasound. We're currently awaiting the results of a CT of his pancreas because of something they thought might have been on the ultrasound. My father is only 52 years old, I am not capable of dealing with the possibility that there's something on his pancreas. I cannot explain how taxing it has been to be 2000 miles away from my dad when he's been so sick. It's a sickening helpless feeling.

So yes, my blog is perhaps boring now, perhaps pessimistic, but this is my blog. This is where I come to be me. Where I come to talk about what's going on in my life, and I am sorry that it hasn't been rainbows and puppy dogs lately. But if you're willing to give me a little time, I promise you that I am trying to do better.

And that's all I can offer right now.


Thursday, October 16, 2008

I'm done with irony.

I have the worst headache I've ever had in my whole entire life right now.

Sometimes I wonder if it will ever stop.

Strike out

Wednesday, October 15, 2008

I'm having a hard time figuring out how to write what has happened today. Every third word that comes to mind is fuck, and that's not making for a very fluent blog. I'm just so fucking frustrated, I don't have the words to express it.

Today was the much anticipated ENT (okay, that one wasn't much anticipated at all) and neurosurgeon appointments.

The ENT once more stated that my sinuses are not the cause of my headache. He also said that although I might feel like I am dying, I have no infections in my ears, nose or throat. So even though I had a fever when I was there and my whole face feels like it's going to explode, this too shall pass, without prescriptions. Fine, I understand that, and I'm sure my body is better for not having drugs in my system. Unfortunately, the CT scan of my sinuses they were waiting for didn't show enough and he wasn't able to tell the composition of the cysts. So I'm having a new CT scan done next week. And in the meantime, I just wait.

After the ENT was the neurosurgeon. Basically my last hope for figuring out why my head has hurt for the past month.

I really do like my neurosurgeon. He looked at my MRI last week as a favor and gave me this appointment even though the MRIs didn't show that I was really a surgical patient. He's a great doctor, I like him a lot, but today just sucked. He was polite, he let us look at the MRIs and then he said that there's nothing wrong. He said that if they were going to publish MRIs of what a brain should look like after Chiari decompression surgery, that these should be them. Because my brain is apparently great.

Except it's not. Because if my brain was great, it wouldn't hurt to cough, to whistle or sneeze. Because if my brain was great, it might actually not hurt all the freaking time. It might respond to any pain medication. It might stop.

This makes 3 doctors who are saying that there's apparently no cause for my headaches. He offered no ideas, no suggestions, just that if it gets worse there are a few more tests they can run, but he doesn't expect to find anything. He said we should treat the symptoms, which was just wonderfully helpful.

If I could treat the symptoms, I wouldn't have made this appointment. I listed all the pain medications, the fact that tylenol, advil, aleve, axert, tramadol and percocet have done nothing was apparently unimportant. I'm just supposed to treat the symptoms. Please someone tell me how to treat the problem where my eyes dart from side-to-side uncontrollably. Or how to deal with the fact that frequently I feel like my feet are going to flip over my head. Or how about the fact that when my head hurts the most, my eyes dilate extremely widely and it's difficult to go outside because my pupils won't constrict. Give me that pill.

But no such pill exists. So treating the symptoms obviously isn't the answer. Not to mention that he gave me NOTHING with which to treat the symptoms.

I'm just so incredibly frustrated with all of this. In the last hour I've burst into tears about 3 separate times because MY HEAD HURTS but apparently, it doesn't. Apparently it's fine. Apparently, this is the rest of my life. Apparently my neurologist was right, there's just nothing that can be done.

I'm just not sure how I can come to terms with that reality, but as it has been made clear to me, that's what needs to be done, because apparently there's nothing else to do and I just need to move on with my life.

I just don't even know what to do anymore.

Fuck everything.


Tuesday, October 14, 2008

I got a good measure of how healthy I sounded today when my department chairpersons came into my room and told me I was going home. Not asking me if I wanted to go home, not asking if I felt well enough to stay, informing me that I needed to get my butt home, to bed and rest. The caveat of this great coup being that I had to come back for parent-teacher conferences tonight.

So on the one hand, I got to go home and nap, on the other, I had to bring my raspy man voice with a cough back self back to work to meet with parents for 2 hours.

I'm thinking that given the enormous amounts of pain in my face every time I bend over that perhaps going to an ear, nose and throat doctor tomorrow is actually a good thing. Especially when it is followed by an appointment with a neurosurgeon who can possibly give some input on why my brain is on day like 27 of a headache.

Tomorrow will be interesting, that's for sure. Especially if they let me work all day long.

That feeling

Monday, October 13, 2008

I was thinking earlier today about how I could most accurately and uniquely describe just how crappy I've felt all day. Because there are only so many ways to describe sinus congestion and voice hoarseness and coughing up yellow crap. I mean, not that that image wasn't effective I'm sure, but I'm guessing you don't want me to continue with the description of it.

And then I dropped my phone in a toilet. And it took me like 10 seconds before I realized that I'd done it, so my phone got to marinate in the toilet water before I fished it out. Thankfully I had not yet peed.

And I'm pretty sure you can all empathize with the feeling of knowing you've just done something incredibly stupid (and unsanitary). Something that will cost you 300 dollars out of pocket (since you're still locked into your contract and this phone was only 3 months old...). Something that will cause you to lose every. single. phone. number. you've had in a phone for the last 9 years.

Imagine that feeling. Plus A LOT of snot. And that would by my day.

What comes from bragging...

Sunday, October 12, 2008

Y'all I might be dying from a cold.

But I feel like it's legitimately like some super cold the powers of which I have never seen before. It has simultaneously made my sinuses so full and so dry that my nose ran/was congested and then bled this morning.

I am miserable. My face hurts in like 12 places. My ears hurt so much that my jaw now hurts as well. My throat hurts and while I don't want to give my neurologist any credit, my head does hurt rather substantially more as a result of real sinus congestion (she's still a crappy doctor, even if she wasn't entirely wrong about sinus congestion leading to headaches).

To recap. I bragged with a mild cold, I let it sit on my blog, the universe took notice and now I think y'all might want to make funeral arrangements because I'm not kidding when I tell you that I am possibly the most miserable I've ever been. Ever.


Friday, October 10, 2008

I have a seriously severe case of writer's block right now. It might be the snot which now occupies all the sinuses not filled with cysts (see, they are handy), or it might be that right now I have TWO completely independent headaches.

Can I get some kind of trophy for that? Because seriously it's amazing. The 23 day headache remains, and now I have a sinus headache to boot. Factor in the sore throat and you'll understand that I am not an especially pleasant version of myself, even in the frame of the past month.

BUT, something good happened and since people have made their displeasure with my negativity known, I'd like to take a minute to brag share.

Last night I got my test grade back from the exam I took on Tuesday. I got a 94 out of 100. Which, first of all, considering I did almost no work towards this test, is pretty freaking fabulous. Second, the class average was a 50. So, if you're in my microbiology class, I'd like to sincerely apologize for ruining the curve. Okay, so I'm not really sorry, but I needed a win pretty badly.

So to check the scoreboard...Me: 1, My body/the universe/negativity/unpleasantries: 10,000

But hey, I'm on the board now.

Low like Death Valley

Thursday, October 9, 2008

Sometimes, when you're going through a difficult time, it's hard to even see when things are the worst. All the badness blends together into a crap frappuccino that just. never. ends.

Today was not one of those days.

That is not to say that today didn't suck, because, oh did it ever suck. I mean, we're on what, day 22 now? Yea, that's rocking.

Like how I woke up with such a sore throat I've wondered if I may have swallowed battery acid in my sleep.

Or how I got half way to work and then had to turn the car around and go back home because I FORGOT TO PUT A BRA ON. Who even does that? Seriously.

Or how about when I left my lights on again? Bless the person who told the front office who made an announcement. Unfortunately, enough people know my car that immediately everyone popped their heads out of their classes to watch me do the walk of shame to my car. To be honest I was a little amazed it didn't start pouring outside when I walked out to turn them off.

No, the low point of today was very clear indeed. Today at work we had a special evening event where visitors can come check out the school to see if they want to send their kids there (we're an upper school, ages 14 and up). The teachers have to dress up like adults (except for the bra part apparently) and stand on our feet for like 15ish hours. It's awesome. Except, you know, not even a little bit.

So a parent (of a prospective student) comes up to me and starts a conversation, which is fine, I'm there to be friendly and I was. And she goes, "so, how does your daughter like it here? What grade is she in?"



I realize that perhaps this seems insignificant. But this is the third time in 3 years that an adult has inquired about my (imaginary) high school aged child. I AM 25 YEARS OLD. It is bordering upon physiologically impossible for me to have a child this age. Seriously.

Now, If you'll excuse me, my shattered self-esteem, throbbing head, shredded sore throat and I are going to sip on hot chocolate and eat junior mints until we slip into a diabetic coma and Friday finally rolls around. How is it not the weekend yet?

Different day

Wednesday, October 8, 2008

Assume the lack of blogging today is a sign that today is a repeat of the past 21 days, only, you know, another 24 hours of it.

Perhaps I'll have something more profound to tell you after my 15 hour workday tomorrow. I wouldn't hold my breath.

Actually, on second thought...


Tuesday, October 7, 2008

Help me Lord, it's been 20 days since this headache started. How I am still alive, I'm not entirely sure. Yet, I am.

Today was the ear, nose and throat doctor appointment, which I have to admit, was a little bit satisfying. I went in, the doctor asked why I was there, I explained the headache and he said, "oh, your sinuses are not responsible for those headaches."

(No shit Sherlock.)

He went on to explain about 800 ways how that assumption was false, little did he know that he was literally preaching to the choir of all choirs on that one. He even suggested that perhaps this was a bit of a "wasted appointment."

(Um, again, I say, no shit Sherlock.)

All that said, the doctor was actually quite nice and to my surprise (and not great pleasure) he did have some interesting information. After looking at the MRIs he has determined that I do not have a sinus infection as I had thought. Not only do my sinuses look fine on examination, but I have no symptoms of a sinus infection. There's no mucus. It's not an infection. However, what I appear to have is a sinus cyst. Or rather, 3 sinus cysts. He said that sinus infections don't cause perfect congestion of sinuses like what shows up on my MRIs, but cysts apparently do.

To confirm that these cysts are benign and can be left alone, they need to do a CT scan, or at least look at one. I had one the day after my brain surgery, which was at the hospital where the ENT works, but of course that wouldn't come up on the computer when they wanted to look at it. So I have a follow up appointment in a week to make sure that they see the CT (if not they'll schedule one) and that it looks as benign as they expect it to. Assuming the CT is fine, he said he'll write my (ex)neurologist a note letting her know that my sinuses are not the cause of the headache that never ends. Which will be such a wonderful moment. SUCH a wonderful moment.

(I could lie here and tell you that I'm not worried at all about the cysts, but you know me. I'm sure it'll be fine. Really. They've been there for 12 years, it can't be really bad, can it?)

To wrap up the day I sucked at took a microbiology test and then got into a huge argument with my sister (because I'm not happy enough anymore for her. Maybe those of you who are sending me emails about how much of a downer I am can form a club with her?).

My head hurts worse now than it has in at least a week which is discouraging, but frankly, not even slightly surprising.

And so it blows...

Monday, October 6, 2008

So, got an email from the only Chiari specialist my insurance will pay for me to see. He's officially declining to take me on as a patient.

So, um yea. That was pretty awesome.

Excuse me while I go eat myself to death with Junior Mints and Take 5 bars.

(Reason: because he doesn't take on patients who have already had surgery. Don't even get me started. I'm looking elsewhere. Into the land of doesn't-accept-my-insurance-but-might-be-worth-it)

On quitting

Sunday, October 5, 2008

I've made a decision, with some input from Slappy, to quit Topamax. I will admit that I never wanted to take it, but I also was firm in that I would give it a try and see if it helped. I have not yet achieved the dose my doctor wanted me to get to, but I know that I simply cannot take this drug. I know that I cannot increase the dose again. When I tell you that I'm willing to take the headaches over the person the Topamax makes me, then you need to understand that I'm being serious.

And I realize some of you are wondering how I know it's the Topamax and not the 2 and a half week long headache, but, well, I do. Because Thursday and Friday I forgot to take the morning dose of Topamax and holy crap, I was practically a functional human being. Sure, I still had a headache, but the Topamax had yet to do a damn thing for that. But like, I didn't want to sleep all day, I'm pretty sure I laughed and smiled and remembered what it was to be happy.

And then Friday night I took the double dose (right now I take twice as much at night as during the day) and was overcome with tiredness. I laid down and had one of the crappiest nights of sleep ever. I was so tired, but could not stay asleep. Then I woke up Saturday morning and had to take more Topamax, which just perpetuated the cycle of tiredness. I laid down to take a nap at 12:30 and that was after forcing myself to stay awake an extra hour longer than I really wanted to.

Twice this week I left the lights on on my car all day long, killing the car battery. This seems trivial, but I've never done this before, in the 9.5 years I've been driving. And I did it two days in a row. I also missed the turn for my house at least 4 times this week alone and forgot (that I can remember) 3 important work things I needed to do. Aside from ruining my memory, Topamax has also ruined the flavor of carbonated beverages, upset my stomach horrendously and made my bladder rather uncomfortable. Oh and I have the "pins and needles" sensation in my fingers and toes all the time. It's awesome.

In addition, my moods are horrendous. I'm not happy. And not just, I have a headache not happy, like, I'm never happy. I can have a perfectly peachy day and not be happy. My libido is, well, if there were a stronger adjective than gone, that would be it. I feel somedays like I'd rather punch Slappy in the face than do anything touchy feely with him, which is horrible and makes him feel bad even though it's absolutely unrelated to him (which he knows, and we've talked about).

Topamax is about to shatter my marriage and force me onto antidepressants that I do not need when not on this drug. Oh, and importantly, it's not fixing my freaking headaches. I will wean myself off because I'm not stupid, but I want to be done with it, like 2 days ago. I will still be on a small dose when I see the neurosurgeon so if he insists, I can re-start it, but I really really don't want to.

I know some of you disagree with this decision (some of you have already sent emails about that twitter announcement...), some of you have had wonderful Topamax experiences and I'm happy for you. It simply isn't right for me. Please understand and respect this decision and know it wasn't made lightly.

Medical malpractice, in pictures

Friday, October 3, 2008

So, I both wanted to be able to compare my MRI images for myself and better illustrate my great levels of frustration over the radiology clusterfuck, so I'm going to share some MRIs. They're not as fun and illustrated as the last ones, but my head didn't hurt as bad the last time I did MRIs on here, so, well, deal.

For reference, here are 2 normal MRIs of the brain. The pink line is one I drew. It shows where the brain should end, anatomically speaking. It might vary a little from person to person, but more or less, there (at the foramen magnum), the brain should stop, and on both of these, they pretty much and pretty clearly do. Also, notice how the cerebellum (the ball that looks like a small tree in the bottom right of the brain) is distinctly separate from the brain stem (the part of the brain that's connected to the spinal cord).

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Image and video hosting by TinyPic

So now you have the idea of a "normal" brain (though I'm questioning the cerebellum on the second one, it might be smaller than normal, but you get the general idea). Here is my brain 6 months pre-surgery (February 2007)

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Here is my brain post-surgery. Note that the brain is STILL below the pink line meaning that, despite what the radiologist didn't notice, I still have rather obvious (for a radiologist) chiari...

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The other obvious thing to note is the skull. Here is my pre-surgery MRI. Just look at the bottom right of my skull.

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And now look at my post-surgery one. Anyone notice that I seem to be missing a big piece of skull? Does this seem like something that a radiologist should have seen? Or at least noted? Observed? Asked about?

Image and video hosting by TinyPic

I realize I seem to be over-dramatizing, but this is a doctor, it is their job and well, it's my brain, so I'll bitch if I want to.

The latest news is that my neurosurgeon has looked over the films and I have an appointment with him October 15th. Not sure what the next move is. There's nothing glaringly wrong, but thankfully someone with a medical degree seems to be appreciating that everything is not okay either.

When you think it can't get worse...

Thursday, October 2, 2008

I have got to stop making assumptions about things.

For example, when I foolishly assumed that this headache couldn't get any worse, I totally forgot about the sharp stabbing pains I used to get pre-surgery. So now it's like, yea, my head, it freaking hur-HOLY CRAP MY HEAD-ts. Like the ice-pick I have envisioned utilizing so many times in the past 15 days.

Or like how I assumed that my doctor leaving town without calling with my MRI results was the dumbest thing she'd do. Wrong again.

Apparently my angry message yesterday was reason enough to get her moving. Kind of. That is, the nurse must have called her, relayed my message, and then read her the radiology report. She then must have told the nurse to call me with her recommendations. This idea is reasonable-ish in theory, but in practice, it breaks down in a number of ways. Let me articulate them for you:

1) SHE'S NEVER SEEN THE MRI. So basically, she has no idea what's happening. This, to me, is a huge problem.

2) The nurse doesn't know me, and therefore doesn't have any idea what the doctor is talking about when she gives advice.

3) The doctor cannot compare to old MRIs so when the radiologist observed that my right sinus cavities were, as always, completely congested (we do not understand this, but on every single one of the 10+ MRIs I've had since age 13, it has shown up, I have seen 2 ENTs for this, both assured me I'm fine), the doctor heard that and decided that TA-DA! we've found the source of the occipital headaches. Which it's not. Because I don't have sinus pressure. Which she would know if she looked at any of my previous MRIs. ANY OF THEM.

4) If she had spent one moment looking at the radiology report herself she might have noticed a glaring error or two. Like perhaps how the radiologist DIDN'T NOTICE THE CHIARI. Let me explain. While almost 11 months ago I had surgery, my brain still hangs down approximately 10mm lower than it is supposed to. Rather obviously I might note, since I saw the MRI myself tonight. And oh, also, there just so happens to be a substantial chunk of my skull missing. And since no where on the prescription does it indicate that I have Chiari or that I had the surgery, this is a HUGE error on the part of the radiologist. Like HUGE. I'm sorry, it casts a shadow of doubt on a lot of it for me. I cannot trust that all the structures are intact and healthy when you failed to notice that they're, well, not. Slappy and I both immediately said "whoa" when we saw the first side view where the bone is missing because holy crap there's a big piece of bone missing and anyone should notice that. ESPECIALLY a radiologist.

5) The doctor would actually be able to answer questions. Instead, I got a nurse telling me that there's nothing to be done. That I will not be given more pain medication (which I did not ask for, by the way) and that I don't need to schedule another appointment because there's nothing to do. If the pain gets bad, I can go to the ER, but that my doctor will be out of town for 10 days, so she won't be contactable no matter what. And no, no one is covering for her. Her office is just shut down.

Now, if you'll excuse me, I'm off to find a real ice pick.

But seriously, Slappy really stepped up today and spoke to a pediatric neurologist, who spoke with my neurosurgeon's nurse, who is going to make sure my neurosurgeon looks at the MRI himself tomorrow. The pediatric neurologist also offered to look at the MRIs in addition and gave us a reference to a "fucking awesome" adult neurologist.

In addition, my friend Daisy Duke, Attorney-at-Law, spent a bunch of time (for free because she's a rockstar) trying to get USC to, as it turns out, find, and then send me my medical records. Did I mention she's a rockstar? Because she is.

All hope is not lost, but damned if it isn't buried deeply beneath a big pile of doctor bullshit.

Losing Patients

Wednesday, October 1, 2008

I'm firing my doctor.

Which is sad because I rather liked her. And Slappy will be working with her in January. But I've reached the official critical mass here and I can no longer tolerate this kind of behavior.

Example number 1: During the first week of the now 14 day headache, I called on a Friday afternoon indicating that I had a headache I was concerned about. I asked for a call back the next week to re-evaluate the decision to use Topamax. On Monday, when the headache had not disappeared, I called again, leaving another message. On Tuesday, when it continued to be ever-present, I called again. NOTHING. Not a call from the nurse, not a message from the front desk. Never a returned call and at this point the headache was on day 6. When a patient calls and tells you that their pain is an 8 out of 10 for 6 days, you should at least call them back and tell them that you're receiving their messages. But they didn't.

So the emergency room called for me and she let me come and see her the next day.

Example number 2: That appointment I was given was not a prescheduled one, and since her office was unhappy about the fact that she squeezed me in, they decided to make me the last appointment of the morning, even though she had me come in for 9:30. I'm not really joking. I heard the woman at the front say, "well, if she thinks she can come in whenever she wants, then she can wait." And so I did. And while this was not my doctor's doing, it didn't make me feel very welcome.

Example number 3: At the appointment, the doctor ordered an MRI. She scheduled it for Monday so that it could be read by Wednesday so that she could get the results quickly because she was leaving for vacation on Thursday. Do you see where this is going? Do you? Because I've had a headache for 14 mother fucking days and she DIDN'T FREAKING CALL ME. I don't give a flying fuck if my MRI is pristine, she still owes me a phone call. She told me to my face that she would call me by today, BY TODAY, and she didn't. And now she's on vacation, indefinitely, with no timeline in which to call me and give me the results. I don't know if she's coming back Monday or a week from Monday because she was supposed to call me today.

Long story short, I'm in the market for a new doctor. I think it's time to find someone who specializes in Chiari, I know of several, none nearby and only one of which will accept my insurance, which should be fun. Honestly, I just want my head to stop hurting. I'll travel far and wide if that's what's necessary. To the ends of the earth and back.

Just to make it stop.