Not Normal… but at least Unchanged

So a few days ago the Doctor’s Assistant left me a voicemail, regarding the results of my recent brain MRI. He stated that ‘The results from my most recent MRI scans indicate my condition is unchanged’.

I love how they do that.

See, they can’t tell me the results are NORMAL. Ever since a neurosurgeon went in there and removed a golf-ball-sized mass from the center of my brain stem, my condition has not been ‘normal’. Ever since a month before that when the mass filled with blood and then ruptured, causing a hemmorhagic stroke, my condition has not been ‘normal’. They can’t use the word NORMAL when referring to my brain. I just get a kick out of it. They can’t do it. So they have to use the word UNCHANGED, to tell me that there is no cause for worry and that it still looks as good as it’s gonna get.

I’m glad things are unchanged; it’s pretty much what I expected. I figure I’ve gone this long without any recurrence, I’d be surprised to see problems of a neurological nature start popping up now. But hey, I guess you never know.

Some people are so obsessed with being normal. I think most people who know me could testify I am not one of them. I am hardly concerned with the latest fashion or the hottest accessories; give me some comfy jeans and pirate T-shirts and I’m good to go.  In most areas of my life, I’m fine with new things, new experiences.

This is one arena, however, in which I am happy to remain ‘unchanged’.

Road Map of Owwies

 

Burns. Scars. Bruises. Pains. Heartaches. Fears. All kinds of hurts, from all kinds of experiences. As you grow older, they begin to pile up on you, and you get to where your body and mind tell their own stories. This scar is from the flesh-eating fungal infection I got on my arm six years ago. That burn is from my teen years when I wasn’t good at dealing with my problems in healthy ways. This scar is from my carpal tunnel release surgery; that one is from all the time I spent in the hospital with IVs in my arm during and after my brain surgery episode. Oh, that reminds me of my best scar…

I’m getting to that point in my life where the scars help me remember my stories. Without them, some things I’ve experienced would probably start to fade in my memory. I don’t think my scars are ugly… they’re just part of my story. And I have a lot of them, inside and out. They all play a part in shaping me, one way or another. The two diagonal slash marks on my left middle finger are from slicing my finger while trying to help my mom cut potatoes when I was just five; that is probably my oldest scar. The funniest one is probably the one on my shoulder where I accidentally buried a luer during a bad cast while fishing one day. My most recent? Hard to say; perhaps the deep burn on my right palm, from a cigarette lighter. Or the internal scar that led to it…

So many women obsess about scars, about covering them, about how unsightly they are. Me, I don’t have any problem with my scars. They help me remember what makes me, ME. I’m okay with that. The good and the bad, the ups and the downs, it’s all there.

(In between all the tattoos, of course.)

Brain scans, and other things

So, I came home from work yesterday to find a voicemail on my message machine from the eye doctor’s assistant saying they had already scheduled my MRI appointment for this coming Monday. I have to arrive an hour early so they can give me the little pill that makes it okay to shove me all the way in that tight little tube and leave me there for an hour while all the horrible noises go on all around me. And since they’re giving me the little pill, I have to have someone to drive me home.

This is ridiculous. I have such a high tolerance to the little pill, they could give me three or four and I could still pass a field sobriety test without blinking. Oh, I know it’s procedure, its protocol, it’s for the hospital’s safety as well as my own… but it’s still stupid. Now I have to hope my husband will be available to drive me all the way uptown in the middle of the day Monday, which I won’t know until he gets back from Italy, which won’t be until late Sunday night, by which time it will be far too late to reschedule. Arrrgh, why do things have to be so complicated all the time?? On a lighter note, I started taking the medication he prescribed, and maybe it’s too soon to tell, but my eye seems steadier already…

I thought it would be nice housesitting for a week while my husband was away, being back in my house again, but I find that staying there as a visitor is really bizarre and frustrating. Things are weird right now; I’m feeling pulled halfway between two worlds – the married world and the separated world, and I don’t feel like I belong entirely in either one right now. I feel… displaced, I guess. It’s an odd feeling, and I don’t know quite what to do with it.

Part of me is sure that eventually I will move back home and resume my marriage. But another part of me believes that to do so would only continue the unhappiness I had been feeling for years. Things seem much better now, but is it only because I’m gone? He treats me differently, but is it only because he’s trying to get me back home? Would it last, or would he go back to being the same indifferent, distant roommate he was before? I know this is why we are in counseling. And it’s early yet. But I just wish there were easy answers, and I know there aren’t. What to do, what to do??

Disturbed and the Jiggly-Eye

Tired, tired, TIRED…. Falling asleep at work today. Disturbed played last night, and in spite of fighting for a good spot for my smallish 16 year old in a general admission venue, the show was AWESOME. We had a total blast! Skindred opened, and I have to say I liked them even more than the second band, Sevendust. But when Disturbed finally took the stage, there was no question who dominated the entire evening, hands down. I was pleased to find that Disturbed is a band that plays as well live as on their CDs… awesome, awesome show. We came, we saw, we got T-shirts.

Then I had to get up early this morning and go all the way uptown for a neuro-opthalmic eye appointment, to address this eye-bobbing issue. What a nightmare. I would have given ANYTHING to sleep in this morning! Then I got lost trying to get there, was half an hour late… good thing they were nice about it and didn’t make me reschedule. Anyway, the assistant put me through the regular tests, read this, point at that, you know the drill. Then she starts talking about dilating my eyes… I’m like, ‘What?  No no no! I have to WORK today! I have an AUDIT! I NEED my eyes!’ Just then the doctor came in and looked me over, talked to me about my symptoms and all. Turns out he didn’t need me dilated after all, thank goodness! He has prescribed me a medication normally used for parkinsons’ disease, but that has been found to work in cases of “Jiggly Eye” (That’s exactly what he called it, I’m not kidding).

And of course, he wants the ever-predictable follow-up MRI, ‘just to be sure nothing has changed’. Which is Doctor-speak for ‘Hey, New Year, new deductible, let’s get to spending!’ I have been getting occasional follow-up MRIs for the past 18 years; nothing changes, other than the amount I owe. It’s pointless. But God forbid I forego the MRI one time it’s offered, and I end up having some bizarre re-growth of the cavernoma that goes unnoticed until it bleeds out and I’m dead. That would be just my luck.

No, really, I’m serious, if you knew me, you’d know that WOULD be just my luck. Totally.

I even got lost on my way back from the place, couldn’t find the freeway to save my life, didn’t get to work until 11:30, and my auditor was almost ready to leave. Thank goodness for good coworkers who know how to pitch in when I can’t be around. They had already taken care of all his questions, given him the tour, the whole nine.  There was hardly anything for me to do but make my introductions. Yay coworkers!

So here I sit, ears ringing from last night, going on not near enough sleep, knowing I need to stay late to make up for coming in late….ugh.

But was Disturbed worth it?

Heh… yeah.

HAPPY FRIDAY

Oh goodie, the workday is almost over, and you can tell how hard I’m working right now. (NOT)

Actually I have been rather productive today, so I don’t feel so terribly bad about taking a few minutes to post a new entry. I am SO glad the week is vurtually over, as I said previously it’s been a killer. As I write this, I am being annoyed by the constant bobbing of my right eyeball, which over the last few months has grown more and more resistant to the idea of sitting still like it’s left counterpart and just letting me LOOK at stuff. This is a big concern for me, as this is the eye that sustained the most nerve damage when I had my stroke as a teen, and the last time I had it seriously looked at it was just starting to droop a bit and the doctors said it was a sign that it was deteriorating with age. Im worried that this new ‘bobbing’ development is the next step in how bad things are going to get.

Wouldn’t it be ironic if the biggest pirate enthusiast around ended up having to wear an eyepatch? Like anyone would believe it was not by choice…. LOL. Of course, I’d have to design my own styles, to match my many piratey moods… and have a nice professional looking one for audit days. Is there such a thing as a professional looking eyepatch, I wonder? Maybe a simple, black satin number with piping around the edges…?

Anyhoo, Im also excited because I got my Disturbed tickets, and the concert is less than 2 weeks away, Woo Hoo! I haven’t gone to a good head bangin’ event in WAYYY too long. I’m taking my 16 year old daughter, and she’s about to wet her pants she’s so hyped about it. Yep, I am the coolest pirate lovin’ mom around these days…..

Stuff I think about

There’s this show on PBS I’d like to watch sometime, it’s called ‘One Stroke Painting’. I think that show would help me become a really good artist – it would be perfect for someone like me, because I have only had one stroke. It was a long time ago, but I don’t think there’s a time limit on stuff like that – once you have a stroke, you are forever someone who has had a stroke. Mine was nineteen years ago; my, how time flies when one is having fun! I got the bonus plan, complete with brain surgery and the whole nine. My daughter, strangely enough, then went and had one of her own – she was much younger, and hers was completely different and unrelated. She was only five, where I was nineteen when I was afflicted. She has more residual effects, although she’s done better than the worst-case scenarios we were first presented with; she does walk, she’s largely capable. Her biggest hurdle is her own attitude – fifteen now, and convinced the world owes her a pass on everything. Made worse of course by the ex-husband who has ALWAYS been more interested in being the best buddy than being a parent… and don’t get me started on his overprotective mother, whose basement he still lives in at the ripe old age of forty. And we can’t get a date WHY?
but I digress.
My daughter has grown up thinking she should never have to push herself to overcome her challenges. As someone who has struggled with almost the very same challenges, it gets really hard for me sometimes to watch her and worry about what’s going to happen when she walks into the grown-up world and finds out the world isn’t going to cater to her because ‘junk is hard’. We (her stepdad and I) have tried for a decade now to build her up and convince her she has the strength to stare down some of the things she has let hold her back; she in turn has determined that we are the mean, evil, hard-ass Nazi parents. She puts four times the energy into avoiding her problems than it would take to start knocking them out of the park. And despises me the entire time she is doing it.
My daughter will turn sixteen next month. She is mentally equivalent to the average kid her age; she is imaginative, can be funny, likes to laugh, has a temper, does well in some classes and rotten in others. Meanwhile, she will not bathe unless instructed, has to be physically watched to make sure she takes her medications, refuses to take part in household chores, and cannot take responsibility for anything going on in her life. The very idea that she would be driving in the next six months is inconceivable.
I wonder alot… where is she going to be in life, when she is my age? Will she be living in her grandma’s basement with her dad? Will she be able to make rent? Will she be in a codependant relationship? Will she have a decent job? Will she be able to raise good kids? Will she still resent me, or will she understand how deep my love and concern for her have always been? Will she be happy, or will it be too late?
God, my head hurts… but that’s normal. I have had a headache since I was nineteen… did I tell you I had a stroke?