Seriously. As if a brain tumor and THAT aftermath wasn’t enough (see blog “Lots of Pillows”). Now, 8 years later, there is more going on that is so ridiculous I need to write at least one entry about. So much more. And I’m tired of it. This is sort of how I feel (see my friend Stabby the Unicorn above).
Have you ever had a procedure, and really weren’t properly warned of the ‘possible side effects’? One in which you just have to outweigh the goods vs. the bads and see what happens? See, I wasn’t really given a choice. I had a tangerine-sized tumor pressing on my brain stem which required surgery immediately. Like, “If you rode a roller coaster, your brain stem could’ve snapped” immediately. So, of course I understand fully why something such as my aftermath occurred. Sometimes, we aren’t given a choice. I’d imagine this is true of so many situations; cancer, the many serious illnesses in our baffling world, etc. I empathize. But other times, I want to throw in the towel.
Let me define my condition: Trigeminal Neuralgia , is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head. TN is a form of neuropathic pain (pain associated with nerve injury or nerve lesion.) The typical or “classic” form of the disorder (called “Type 1” or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode. These attacks can occur in quick succession, in volleys lasting as long as two hours. The “atypical” form of the disorder (called “Type 2” or TN2), is characterized by constant aching, burning, stabbing pain of somewhat lower intensity than Type 1. Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating. It is nicknamed “The Suicide Disease.” http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
I’m sorry, what? The suicide disease?
When I decided to write a blog, I considered penning an addiction blog, a brain tumor blog, a music blog, etc. Too confining – I have too many (mostly, scratch this entry) wonderful things to write about!! The reality is, after this entry, I hope this blog serves as a means for me to focus on the humor, the good, the strange, the wacky, etc. I could honestly write essays on everything from these issues to music to cats to “why are some words that are one syllable pronounced with three in the South?” So, it is my hope I am venting to move forward, or, perhaps, someone out there knows what I’m talking about with this “rare condition” and can help. Wouldn’t that be amazing?
I digress – if you read that definition, I have Atypical Type 1 and 2. The tumor left in my brain is pushing on this nerve, causing all kinds of sporadic pain/burning/aching/lightning zaps. And my tumor’s shrinking, that should be a big “YAY!”, right? RIGHT? Ahhhh, but no…as it shrinks, pressure comes off the nerve, allowing me to feel more of this side….resulting in…more pain.
Have you had nerve pain? Weird, right? Narcotics don’t help (thankfully, I’m a recovering addict)..and to add insult to injury, my pain is located in the lingual nerves IN MY TONGUE. Thus, as I wake up, and talk, eat, move my mouth throughout the day – I’m using this part more and more, resulting in more and more pain as the day progresses. All combined, I’m pretty much looking at MORE pain in the seconds/minutes/days/years ahead.
I take several medications that help, mostly meds which have a primary use to treat seizures, but have secondary neuropathic pain uses as well. Some days I have no pain (YAY!), but these are becoming fewer and farther between.
Quite honestly, I say sever the damn nerves. I can’t feel that side of my face anyway. I’m NOT getting gamma knife radiation again (if you read this blog for the tagline GK radiation, please feel free to ask questions. Many people out there are terrified of diagnoses involving these meds, these radiations, etc. Thus I’m putting this blog out there for those of you who need some venting, too!!!) Acupuncture? Can they actually stick needles into my tongue? Become a Hunger Games Avox and just cut my tongue off?? Don’t think I haven’t thought about it.
Can I just ask WHO in the world can relate to this? Please. Someone! I’m really in the dark here. Because today, I’m in pain, and it seems to me I’ve paid my dues in the “life struggles” category.
If I’ve learned anything, though, in the rooms of AA, in my therapy sessions, in life, period – everyone has their shit. I know this. I also think, sometimes, some of us got the entire truck of manure dumped on our heads. If you are also one of these people, again, I empathize.
So – that’s what I got today. Winter is not my friend. I hate that my parents feel as helpless as they do, I hate wondering if my sweet boyfriend is going to be able to put up with me should this continue at the rate it’s going, I hate that I sometimes constantly complain, or have to just come home from work and knock myself out rather than do what I need to do in the house, study for licensure, be a normal human being. Can I really raise a family like this? Will I need a job in which I can be mute soon/work at all? C’mon, God, I worked so hard at my other shortcomings……(sigh)…….