Friday, January 30, 2009

The Demons

I have always said there is a demon, or a unrelenting demon seed living in my head. Now that the clusters are gone, I've decided to go in a different direction. Besides describing them I want to try to get into the grinding gears of their mechanics. Seeing as though I already have a close, almost intimate relationship with the shady loser. Hopefully my speaking of them won't unleash the beast!! (knocking on wood...)

The demon/seed= the cluster headache.

I swear to all that's holy that there is this little horned devil guy running an amuck in my head. He pokes, he prods, he bites, tears, and leaves a excruciating, throbbing and burning trail. He's a homeless little glob that comes and goes as he pleases. Not only does he reside in my head, he picks up housekeeping in my eye, sinus, cheek, temple, jaw and ear. He's a sneeky bastard! Not even the cops (meds) can catch him. But what to name this hostile, mean, cruel, homicidal maniac??? I got it! The Ripper! Sounds like a bad WWE professional wrestler. He's stage moniker is farting! Oh my we've hit a new low...

The chronic daily headache:

Its still painful but nothing like the clusters. This guy is kinda dull, annoying, boring, a little lazy but has a fiesty side. Kinda reminds me of a realxed, sun burnt surfer dude that tends to get fired up over a thunderous wave. This is harder than I thought. I can't think of any names. For boring? Fiesty? Truely has to be writers block. Either that or the dull pounding in my head... maybe I'll finish tomorrow. Like I said plenty of times I DON'T KNOW

Thursday, January 29, 2009

My Minions

Im feeling pretty good today, so while I've got that going for me Im going to break up another long day @ home. I should be crocheting winter hats for family, but I'd rather do this! They can wait I guess. I've already postponed some since Christmas. They're family, they'll understand right??

I'd like to start off by saying a big Thank You!! to my husband, Mikey. (Dave too. Its one of those stories, he's known by both his first and middle names) He's been my #1 fan through out this whole ordeal. He's been my rock, holding me from falling deeper into the chasm. Letting me cry to (and on!) him, letting me get out my frustrations in a verbal assault, and always telling me no matter how much pain (or how utterly dreadful I look) I am gorgeous! While I been having problems with this blog (people not being able to see it and what not) he has always wanted to post a comment. I helped him get a google account, and it still wouldn't work. So if he can't post, I'll wite about him. Mikey your the most sweetest person I know and Im glad to call you my husband. Thanks again babe!

My parents also deserve a big Thank You!! My Bumbie (its a nick name I gave her, not her real name!) is the best mother a lady could ask for. She's always there when I need to vent, (sorry bout the phone bills Mikey!) she's the first to ask if I need anything, even though she lives 15 min away she'd drop everything to come over if I needed her, she's bought me things when we didn't have the money, oh crap this could go on and on. Bumbles, just know that everything you do comes with an immense sense of thankfulness that I could never repay. Your one in a million!

Billum (my dad) also deserves a huge Thank You! His intense culinary expertise (with no formal training mind you) has gotten me through lonely nights when I didn't have the motivation to cook. That's funny, not that I can cook. Im lucky if I can make a frozen dinner. Getting back to the point here, he's an amazing chef and it has all helped us maintain our winter weight. One thing I will never forget, is he came to help me prepare Thanksgiving 2008 dinner. He took his time and slowly showed me the steps I needed to take. No recipe, at all! That's by far amazing to a non chef. He's not only a great chef, he can bake a bad ass cheese cake! (Right Mikey?) That's not all, don't get me wrong my Dad has many qualities that make him a great person and Father. He's hella funny, loves his dogs (its for the boys!!) and loves all of us unconditionally. Thanks again Billum!!

Also and extended warm Thank You to all my in laws, nieces, and nephews. All your support has been appreciated. I can't name them all, my husband has 5 sisters and 13 neices and nephews!!!!

Last but not least, a Thank You! goes out to my first follower of this blog Payday! He's a good friend of my husband and I. He works with Mikey at the best pizza shop in the area!! (Don't worry boys I won't mention the name!) Anyway, I asked him lastnight through an email if he could get onto the blog from his home computer.
(Side note: my husband and I must be the last people on Earth whom do not have a computer, or easy access to one. Besides the library. Yuk! No thank ya! I do all my posting through my splendid Sidekick...) Anywhoo, he emailed me back saying he read the blog. Little did I know he was the first to follow! Thanks again Payday!! Keep those cat pictures a coming!

I do have to confess I am so anal about they way I write this. I think I've changed just the last post 8 times!! Whether that's good or bad I couldn't give a flying crapola about! Its just nice to spend some down time with Mikey, read him lines and he gives me some great imput! You'd think he was a professional writter with some of the wity things he has to say!

I feel better now... I better get something done around here while I have the energy.

Wednesday, January 28, 2009

The Crap List

Its been a while, hasn't it? I haven't posted because, well, things haven't been going all too fabulously.

1. Nuerologist YAY! End sarcasm here...

(Just for facts sake this is the same nuerologist listed below) Yet again, I dumbly goto see this quack, and AGAIN he shows me what a complete idiot he is. Did we not see this coming?? "Here take this and let me know how you handle it". Your kidding me right? The drug he gave me (Topamax) I already had an allergic reaction to. "Oh that's ok, we will put you on another drug, to counteract the side effect" WTF?? Umm how about a big fat NO!! I've been on 20 something drugs (a lot has changed since October) what's one more? B.S!! He's a nuerologist for god's sake!! One would think he would NOT put me on a DRUG that I could potentially DIE from??
Seriously this man is a joke of a so called Dr. He's a in and out type of guy, "Here's this drug call me in 6 weeks". Well what if I have a problem with that drug? "Call the office, and we'll take care of it" Ok. Sounds good. EXCEPT: when I call the office to leave YOU a message, I NEVER get a call back! Gravy!

2. The fantasic Holiday Season...

grrr... It all went well, but too much all at one time. Can you say massive pain?? Enough said!

3. New pain!
(Shut the front door! Really??)

Those two words scare the ever lasting life out of my soul. Not only have I experienced severe pain from the CH, I've now "out of the blue" developed a new condition. Apparently if you have one type of headache you can obtain others... Well I'll be damned!! So now I get cluster headaches, on top of chronic daily headaches, on top of tension headaches! Which all are nothing compared to the satanic CH. Yay me!!

4. The hibernation of the infamous cluster headache

Now for some strange reason I haven't had an attack in 2 months! I know cluster headaches come in cycles, and Im just starting to figure them out. For example when they start and stop. I just don't want to be in that postion to have CHs and chronic daily headaches at the same time. If that's even possible.
It's a major accomplishment for me, going so long with out an attack. No preventative medication, nada! Which makes me wonder "Do I even need to be on preventative meds?" Seeing as though I haven't been on any since early December, and haven't had an attack. It seems like all that hassle was for zip, zero, ziltch. But believe me I can handle the pain of the daily headaches any day as long as the clusters stay dormant. Oh well, only time will tell how my semi pain free remissions last.

5. "Woe is me"

I got so depressed and sick of my pain that all I wanted to do is sleep, if I could. I can't believe it happened but I guess its all apart of the pain bearing process. It has been over 2yrs that I have been dealing with with no relief in cluster headache duration, just pain modification. This new diagnosis of chronic daily headaches has been a pain in the ass. Meaning, its been somewhat easier to deal with the cluster period over, still painful none the less. Adding fuel to the headache fire!
I guess the only reason I gave up was because I thought nothing was going to work, the Dr's told me I'm fabricating the pain (many have told me that), and it's all in my head. (Literally! HA! the mean Dr's say that too)

Being in daily pain ranging from "Ok I can deal with this" to banging your head on the floor hoping the constant thrashing will somehow kill the unrelenting demon seed living in my head, has been by far the worst events in my small existence. The daily pain takes its toll on me physically and mentally, as it would for anyone. I've been entombed in this house, not seeing the outside world for days on end. Afraid to go out because of when or how the pain will spike. For some reason I was Ok with that. During those times I would picture what I have always wanted for my life, and what I thought I should be doing besides watching precious time pass me by. That in and of itself brought me down even farther in this torturous spiral. Finally she gets it out!!

Its been a long battle, and its not even close to being over. But it is not by any means the worst in history! There comes a time you start to say to yourself over and over "How could this get any worse?" and "What will work to make it all go away?"... It will get worse and there is something out there that WILL help. Im 100% positive of that. I've just got to get to the other side of the so called "healing street". While that bridge seems to be closed for construction, I've just got to put on my big girl unders and deal with it!!! My day's coming, help will come!!

The only thing that seems to bring some realism is finding other blogs/personal experiences and come to the realization... Its not all that bad. There are people who have my condition even worse and I sympathize with you. May we all be cluster heads on the same boat that will surely sink. But with time, medical research or a cure, as our saving grace!