Sunday, July 27, 2008

In Which I Come To Terms

I've always been an emotionally strong person.

I was the one who has always waited until I was alone to break down, being constantly afraid of appearing weak.

I was the one that comforted my wife and aunt when we learned that my grandfather had passed away while we were on vacation, even though my heart felt like it had been ripped out of my chest.

I was the one that held my family together when my younger sister was admitted into the psych ward for attempted suicide, even though I was reeling from the knowledge that she didn't follow through with killing herself because she wanted to tell me she loved me one last time.

But yesterday, as my wife held me in her arms, I cried like a fucking baby.

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I approached my wife yesterday, as she was getting ready for work, and asked for a hug. She wrapped her arms around me and pressed her head against my chest, and I could feel the cool moisture from her still-wet hair soaking into my shirt.

"Are you okay?" she asked quietly.

And with that, I broke down.

I could feel every piece of the facade I've built around my emotions crumbling, and for once I didn't struggle to rebuild. I didn't bother to wipe away the tears streaming down my cheeks.

I just cried.

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After more than a year, I have finally come to terms with my medical problems. Seeing my MRI and EEG results in person made it sink in: This is real. I have proof that there is something wrong with me that is causing these problems. And it was like a weight being dropped heavily on my shoulders.

I'm scared. I feel vulnerable. I feel like everything is spinning out of control, and that there is nothing I can do to stop or change any of it. I'm scared because this condition is slowly and irreversibly changing my life. I've seen how it has changed my mother's life (she has the exact same thing), and I'm scared for whats going to happen to me. I feel vulnerable because there was never anything I could have done to avoid any of this, and there is nothing that I can ever do that will stop the progression.

Ultimately, I didn't learn too much at my appointments last week. My doctors pretty much reviewed what I had already been told, and we discussed what the next plan of action was going to be. Even though I've only seen my doctor's twice in 10 months, they've apparently spent large amounts of time poring over my test results trying to find something, anything, that they could link to as a cause.

When reviewing my MRI, I learned where in my brain the GMH is. It is a 5mm-wide piece of extra gray matter located on a portion of the basal ganglia. There are two halves of the basal ganglia, one on each side of the brain. The GMH that I have is on the left side of the brain, which controls the right side of the body. The theory at this point, is that the extra gray matter on the part of the brain that controls motor function is causing "bursts" or "episodes", that translate into the movements that I have.

The EEG that I had showed abnormally high "bursts" of electrical activity in certain portions of my brain, but that there was no clinical (ie. visual) proof of anything.

One thing I'm trying not to focus on is one sentence that my doctor said very quickly: "At this point, we do not believe it is a tumor." That statement went against what they had told me earlier, and that is quite a statement to grasp. Only because I have direct family history, in two different relatives, of brain tumors.

The next plan of action is going to be a sleep study. There is suspicion that I might have sleep apnea, so they are going to try to diagnose that, in addition to getting visual proof of my movements and another EEG scan of my brain while sleeping. I'll be going down in September for that.

Both my neurologist and epileptologist want me to start medication for treatment. They don't feel that there is any danger if I didn't start medication, but they said since its been going on for a year with no treatment that I would probably benefit from it, at least a little. They gave me two choices of medications:
  • Keppra, which is an anti-convulsant, reduces the activity in the brain that causes the movements.
  • Benzodiazopene/Clonazepem, also an anti-convulsant, works also as a mental sedative.

While each might help control the symptoms I'm having, there are downsides to each drug. Due to its potency, Keppra can damage the brain if you take it when you don't really need to. Clonazepem is habit-forming, so as your body builds tolerance to it, it demands a higher dose to make the medication effective.

My mother has taken both of these drugs through the course of her treatment. She has been trying to come off Clonazepem for about 8 years. Keppra is the only drug that she has tried that has lessened the symptoms, but there is the danger of brain damage from it.

What a choice to make, eh? Become a vegetable or a drug addict... Not exactly like trying to figure out what t-shirt to wear in the morning. I'm going to talk things over with The Boss and my parents, and give a response to my neurologist by Wednesday. At this point, I'm not sure which way I am going to lean towards.

---

I'm still struggling to remain strong about this. As I've typed this, I've had to stop a few times to wipe the tears away. I'm not used to feeling this way, and I don't like it much. I know I need to be strong about it, because it is not just scary for me. The Boss is scared and worried, too. This is uncharted territory, both for me and my doctors.

In the end, I know I'll be okay. I have an amazing circle of people around me that provide support and empathy, and that is the best form of treatment for me right now.

P.S. There has been a drought of funny around these parts lately. I'll make you laugh with tomorrow's post, I promise. It'll include my thoughts and opinions of "The Dark Night".

21 Comments:

KT said...

Oh yuck. I am sorry you are dealing with this. I wish I could offer some real words of wisdom to help, but I'm not good at that. Just know that I'm here in Michigan rooting for you. And I'm glad you have The Boss to hold you when you need to cry, because we all need to cry once in a while. Hang in there, Badass Geek. I'll be thinking of you.

Forever In School said...

Oh boy! I am so sorry to hear this. I don't know what to say. I can hardly hold back the tears.

Well, You seem to be a strong person. But don't be afraid to let go sometimes. Don't be afraid of crying. It's OK to be scared.
I am glad that you are not alone. That you have a great family and the Boss to be with you.
We are here too, if you feel like talking.

Daddy Files said...

Keep your head up man. I hope whatever it is that's causing this can be minimized to the point where it just becomes a mild distraction. But at the very least, you have a good attitude and what sounds like a great support system in place, which is a lot more than some people have.

I wish I had words of wisdom, but whenever I'm legitimately scared about something I usually just write a post in my blog about poop, or tell a joke like "Hey, have you seen that new pirate movie?"

It's pretty good, but it's rated "Argghhhhhh!"

Good luck buddy!!

Heather said...

What would happen if you decide you don't want to take either one of those medicines?

scatterbrain said...

This is a bad hand you’ve been dealt. GOOD that you’re able to cry – so important to release the pressure that builds up.

All I am able to do is pass on what I’ve learned from my own life changing events (which I’m not up to sharing, so well done you). Forgive me if it comes out wrong, I’m struggling here. It’s easy handing out advice, but everyone takes it in a different way.

Accept that life can be such a bitch and doesn’t always work out the way you’d planned. Hold tight, keep your head above water and don’t let it define you. The most important thing for me was the realisation that, no matter how bad you may feel - it does not last. You will work this out, especially as you obviously have a wonderful wife.

"Yesterday is history, Tomorrow is a mystery but Today is a gift."

I’m sure I quoted that wrongly, but it’s my mantra and helps me to focus on one day, sometimes even one moment at a time. I’m also something of a Pollyanna and there’s always someone worse off than you.

Please, don’t feel that you have to reply to this – pardon my gushing.

Oh and I'm glad the fleas weren't in your bedroom, he-hee!

Aunt Becky said...

You don't have to be funny all of the time, you know. Let it out, if you want. The whole situation sucks major balls and I wish I could make it better for you.

I'm giving you a hug from afar. Sorry about the sweat stains. It's hot and I'm pregnant.

Badass Geek said...

KT: Crying did help. I know now its best not to be strong all the time.

FIS: Letting go will be much easier now that I know I can.

Daddy Files: I'm trying not to let this be the main focus for me, because it will destroy me. Optimism has always been a strong point for me. Thanks for the joke; The Boss will love it!

Heather: If I decide not to take any medications, then it is safe to assume that everything will progress on its own without the drugs to slow it down. I was told that there shouldn't be any risk to me not taking anything... So in the end I guess there might be. I'm going to ask my doctors that more in depth this week.

Scatterbrain: Compared to other things I could have, I would much rather this than others. "Hold tight" is a good motto to have. Thank you for your kind and heart-felt words... They are appreciated.

Aunt Becky: You know? It does suck major balls. And I'll take a hug from you, sweaty or not. It's hot here, too.

Lola said...

Wow. I'm so sorry you found out scary things that don't have such great options. That just sucks, no way around it.

And you spent part of your day trying to help me on such trivial shit? Dude, you are the best. It sounds like your family is great, too. That's the upside at least.

I'm always the strong one, too. Never letting them see how much pain you're in seems like the thing to do, but it's a lot of work, and it's tiring. Letting it out is always better.

How is your Mom?

Badass Geek said...

Lola: My mom is doing okay. She feels bad that I have this going on, because she knows how much she struggles with it. She is very supportive, as is the rest of my family. We'll see how things turn out.

Sus said...

I am so sorry. I am so glad you have a kick ass wife like The Boss to be there with you. If there is anything I can do, please let me know.

Badass Geek said...

Sus: Just having an awesome friend to talk to is all I think I need at this point, but I'll let you know. =)

Employee No. 3699 said...

You've made me laugh out loud at work before and now I'm crying. Thank goodness for the extra absorbent Puffs on my desk.

Your strength, humor and love from family and friends will help you through. Please know you're in my prayers.

Badass Geek said...

Employee No 3699: Thanks for the thoughts and prayers. And for the record, it is my ultimate goal to get you to laugh and cry at the same time. Let me know if I need to buy you extra tissues.

Miss Grace said...

Can I offer you a virtual hug, or is that totally gay?

I'm sorry you're going through this right now.

Badass Geek said...

Miss Grace: I'd love a virtual hug. I wouldn't say that offering that is gay at all.

Aub said...

I'm really sorry to hear about the bad news. I know it sounds corny and ridiculously cliche, but try to keep as much positivity flowing as you can. That' probably really hard right now, but until you find out otherwise, it can only help to hope that the worst news is behind you. I'm rootin' for ya, man.

Badass Geek said...

Aub: I have so much positivity flowing through me right now, I'm pissing out sunshine and rainbows. Seriously though, I appreciate your support.

GoteeMan said...

My wife was on Keppra for some time - it helped with some problems (and had no real side effects), but she ended up on Trileptal and Depakote, which have worked very well for her..

At one point or another, we have tried just about every anti-seizure, headache, etc. drug, so let us know if we can help with any questions about side effects, etc.

Believing for your complete healing... And there is no right/wrong way to deal with this. Each of us comes to terms with our circumstances in different ways...

K and I have been going through difficulty with her neuro-motor illness for over 6 years now, and we just take it one day at a time... thankfully, we are now seeing some improvement, but she's still not out of the wheelchair on her own yet... but we're hopeful.

J/

Badass Geek said...

Goteeman: Thanks for your encouragment. Sounds like we both have some struggles currently. Positivity and optimism, right?

Moonspun said...

Believe or not, my friend, whilst I was away on vacation I was thinking about you and wondering how the appointment went. Thanks for sharing.
I know what's it's like to be the strong one AND the relief you feel when you are finally able to let go and 'cry like a fucking baby.' You just gotta sometimes.
You may have a challenging medical condition (to say the least) BUT you've got support and the smarts to figure out what's right for you by finding out information.
Here's a virtual hug and smooch from me....

Badass Geek said...

Moonspun: I've discovered that I was being strong for myself, and strong for The Boss, because it is not only scary for me... I found out that it is scary (in a different way) for her, too.

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