Tuesday, September 21, 2010


Wow, it's been quite a while since I last posted.  "So what is new?" you may ask...not too much I suppose.  I'm actually feeling a bit better than I have in a while, I finally found a medicine that takes the edge off the worst of the headaches so I can at least semi-function.  I can sit up and get out of bed so I'll take that as progress.  I also found a wonderful group of people through the American Syringomyelia and Chiari Alliance Project (www.asap.org).  It was just so wonderful to be surrounded by people who truly knew what I was going through.  It was an incredibly validating and uplifting experience.  It's amazing how good it feels to realize that you are no longer alone in your suffering.

OK, I'm off to go exercise...Chiari is no reason not to take care of the rest of me, in fact it's even more of a reason I DO need to take care of the rest of me...

PB the J

Tuesday, February 2, 2010


Catch-22: a paradox in rules, regulations, procedures, or situations in which one has knowledge of being or becoming a victim but has no control over it occurring.  For example, take the case of John Yossarian who wishes to be grounded from combat flight duty. To be grounded, he must be officially evaluated by the squadron's flight surgeon and then found "unfit to fly."  "Unfit" would be any pilot that is actually willing to fly such dangerous missions: as one would have to be mad to want to take on such missions.  But the "problem" is that to be declared "unfit", he must first "ask for evaluation", which is considered as a sufficient proof for being declared "sane". These conditions make being declared "unfit" impossible.  

The "Catch 22" is that "anyone who wants to get out of combat duty, isn't really crazy" (Wikipedia, 2009).

So what the heck does this have to do with me, you may ask.  Well, when Joseph Heller came up with the idea for Catch-22 it was based on military bureaucracies.  The idea has since been extended to almost any "no-win" situation.  Take me for example.  I have a condition that prohibits me from functioning at my full capacity, namely, working.  In order to get myself "fixed" I would need brain surgery.  I cannot afford brain surgery so I would need health insurance to cover it.  I have no insurance (except for what I have through school, which is basically nothing) because I am unemployed.  Thus, I am stuck.  And, to make things even better, even if I were to gain health insurance, I don't know if it would be covered because it may be considered a "pre-existing condition".

And this is where it gets political, sort of.  Let me preface the rest of this with the statement that I did NOT vote for Barack Obama. However, I do laud his attempts at health care reform precisely because of my predicament.  Now I can those of you out there practically foaming at the mouth ready to shout that he's a communist and he's trying to make this country socialist.  I hate to break it to you, but this country already is somewhat socialist: it's called public education.  What really gets me is the fact that many of those who are screaming communist are the very same people who were willing to give up their rights to privacy under the Bush administration in the name of national security, who now say that universal health care is an affront to democracy.  Ahhh hypocracy at its finest...but I digress.  I don't really care for politics at all, except of course when it directly affects me and this seems to be a fairly rampant disease in this country, which is just sad.  But it's true, I don't like politics; it upsets me.  I hate that we can't accomplish things in this country and help one another because of it.  I don't really care who accomplishes things in this country; they could be Democrat, Republican, Green, Red, Pink, Blue, Libertarian, or Extra-terrestrial for all I care.  All I know is that a much smarter person than me once wrote:

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness."  (Jefferson, 1776)

Right now I am in pain.  I spent all day in bed yesterday with an ice pack on the back of my head/neck.  Do I have life? Yes.  Do I have liberty? Yes.  Am I able to pursue my happiness?  No.  I suppose one could bandy semantics here and say that I still have the right to pursue my happiness, I just don't have the ability.   However, I am being denied that ability because of the way our health care system is currently set up and I don't know what to do...

Ok, getting down off my soapbox now and trying not to fall over from the dizziness...

Later Gators


Monday, February 1, 2010

Joining the party

Okay, so I'm going to try and take a stab at this whole "blogging" thing; figure better late to the party than not go at all. I think the main reason for this is to give myself an outlet to try and deal with what's going on with my stupid brain. The title of my blog, "Help My Brain's Leaking" is quite literally true. I thoroughly enjoy plays on words and I just realized that my title fits that bill as well. It could be read as a request for help: Help! My brain is leaking! (Help, what do I do???) or as a command: Help my brain's leaking! (Stop my brain from leaking NOW!!!). Not sure what I consider more true at this point...

So I'll sum it up in two words: Chiari SUCKS!

Anyone who has it can tell you just how much it sucks, e.g. gravity suddenly being next to you rather than under you, randomly walking into things, feeling like you're falling when you're lying down, and the ever present and oh-so-pleasant feeling of your head feeling like your eyeballs are trying to escape through the back of your skull. It's an altogether lovely and heart-warming picture, oh wait, no, that's a little kid playing with a puppy. Chiari is something else entirely.

Now I don't want it to seem as though I do nothing but complain. I really don't have a lot to complain about in the grand scheme of things, and you need just turn on the TV and get some images from Haiti to realize how good you do have it...

I have very loving and supportive family and friends, a roof over my head, food and drink when I'm hungry and thirsty, things to entertain me and help take my mind of my brain, so I'm really very blessed.

What then, you may ask, is the point of all this blather then. Mostly, because when I tell people, doctors included, that I have Type I Chiari Malformation, I usually get blank looks followed by Chi-what?!?!? If my rantings and ravings can help educate a few people then I'm all for it, plus it's definitely a bit cathartic and it gets some of the old writing/grammar synapses firing again in the hopes that I don't come across as a completely illiterate boob.

Well, that's the basic overview of the why and a bit of the what. Here is a bit of the who. This time of year, January-March or so has historically been incredibly hard for me due to my Chiari. For some reason, my brain gets extra testy and pulls out all the stops. This pretty much means instead of a constant dull ache (which has been present every moment of every day since Christmas of '04--except for one specific time that I'll talk about later) it now escalates fairly frequently (usually once a day) into bone-crushing agony, nausea, and dizziness. I've also noticed the random shooting pains and numbness in both my arms and legs tends to increase too. Yeah, it's just a roller coaster ride of fun.

Okay, I'm a bit tapped out right now, so I'm going to go make myself a cup of tea and probably lie down.

PB the J

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