Sometimes when I sit down at my computer I just want to type really fast clikkity-clik-clik-clik and say "I'm hacking into the mainframe now! What's the secret access code?!?" like they do in every movie (Sneakers being a perfect example of lines like this).
I set up Blogapalooza to motivate my friends to share thoughts longer than the average status update & I'm flattered that many responded. And here I am, 12:40am trying to fit in a short blog in lieu of a homework reading about 19th Century Parisian caricature drawing and the study of physiognomy (snore). I suddenly became stressed about not being able to blog on Blogapalooza. How ironic. How is it we set aside no leisure time for something that gives us so much pleasure or allows us to express in print what may be keeping us awake at night?
Of course it was all meant for fun, but what it really comes down to is missing the larger than life personalities of a lot of my friends. I can't get enough, which is why I frequent Facebook so often. I'm trolling for any signs of life. Some people have accounts but never post, some people are too cool to even have an account, or they decide to commit Facebook suicide and delete their account with no warning. I feel the loss because I like to think I pay attention. Facebook is not enough but at the same time I honestly would not even know anything about 195 of my 207 friends if I wasn't on Facebook. Some people stay in touch by traditional means & I'm so envious of their effort.
I miss you guys. I miss the times we had, whether casual or private, or the times maybe we never had at all. They won't happen again and it's hard to face this. (I de-friended some Facebook boys who cared about me once (or did they?) but never said a thing to me during my whole tumor crisis. I did the "dumping" this time -- ha! (Let's here it for very lame victories!))
Originally this blog was about my brain tumor, and I wanted to close it out & begin a third blog fresh. It seems like three blogs for an infrequent writer is too many! How I dream about waking up, kids on the bus, some quiet meditation time, hot coffee (no, it would be tea in this world), I go to my study & log onto my laptop (a Mac) and blog about my kooky/crazy yet ultimately, fulfilling life, because I'm rather well off. I would chronicle the odyssey of being a stay-at-home mother even though the kids are in daycare. I would do this everyday and other mothers would spread the word about my funny blog, and then I would get more $$ from posting advertisements, and them WHAM! I write a book! I do wish this. And to be skinny. But at the same time, wouldn't it be weird to have a bunch of strangers reading your daily thoughts? And you know, I don't want to be an asshole. I want to be happy, and stable. And, I have to ask myself -- is it really any one's business anyway?
So, this concludes my thoughts this early morning. There is a lot I want to write about, including a tidy wrap up of my whole brain surgery & associated problems which linger. Then I can let that go. Lots of loss experienced lately by Montana folk, my friend Drew, and of course Japan. Strange days in March. Hail Caesar!
Tuesday, March 15, 2011
Tuesday, August 24, 2010
Bad Drugs / Good Art / Gray Rain
Whew, it's been a while. I'm out of practice! A few people recently have asked how I'm doing so I thought I'd just go ahead and update my brain blog. Brain is good! But my scar definitely hurts, or at least is sensitive to the weather, mostly cloudy days. This may actually be an advantage if I can now predict weather! (bah-da-bing!/cymbal crash.) My left arm is nearly normal, I still drop stuff with my left hand, or, like, I'll be walking with a cup of water & not realize it's actually leaning, leaking, onto me or the floor. My kids must think I'm a drunk! My shoulder is still being a pain in the...ah...shoulder. It's still acting weird. If I'm in the car, reading in bed, or just leaning back on my shoulder blade my arm just feels like lead. Still does the somewhat painful crik-crak thing adjusting itself, but not as often. I can type with two hands now, but not as fast. I probably will go ahead & ask my doctor for an x-ray of my arm while insurance is still covering 100%.
The bottom line is, I can drive, work, dress the girls, wash their hair, chop parsley -- which is all important in my recovery, but some days I worry. I learned at work when I tried to lift a stack of books over my head onto a shelf above me, that the arm still has some ways to go. It gave out and all the books came back & hit me & the floor.
Tomorrow is my last dose of Keppra (hooray!). Then I'll only be on my thyroid medicine, iron supplements for anemia, and that nasty warfarin sodium (only through October). I actually made a list of my leftover medications for the Free Clinic when I contacted them about a drug donation (Virginia doesn't seem to have a drug take-back program anywhere) but they can't take them unsealed. But while writing out the list -- Dilantin, Keppra, Lisinopril, Dexamethasone, Phenytoin, Synthroid (different dose) -- each of those drugs has a specific meaning and memory for me (all bad). Looking at them was proof of how far I have come. It's hard to see it day by day, but when I realize I couldn't even hold my left arm up at all, I can acknowledge my progress.
Also in the medicine cabinet were the supplements I bought BEFORE the diagnosis, when I wasn't feeling well & just thought I needed to be healthier: a gigantic bottle of 600 mg calcium supplements, Vitamin D-400 I.U., Vitamin B6 (wrong, should have bought B12), and 500mg Vitamin C. I was taking a woman's all-purpose vitamin too. For the January spasms (good name for a band, no?), which I thought were just caused by stress from (you name it!) -- images from the Haitian earthquake, the Appomattox massacre, feeling overworked at the bookstore during the Christmas season during finals, heavy snow & 18 days straight with the girls (& no car) while Ethan did snow removal at LC, and then going back to school 2nd semester, I had purchased: Valerian Root 530mg for sleep, Visine-A allergy relief for my bloodshot/swollen eyes (crying, allergies, who knows?), Bach's Rescue Remedy for anxiety, and Boron's homeopathic gelsemium sempervirens for "stage fright/apprehension" for my upcoming public speaking class. God. I wanted to depress my system so much to stop those muscle spasms from happening. I was so worried about being embarrassed having a spasm in public. But my head kept throbbing and my pulse pounded in my right ear, keeping me awake, and luckily it all led me to an MRI machine. Dang! It was all in my head!
I think we just want to medicate ourselves because we're afraid the problem may be worse than we thought. The thing is, the body is neutral, whatever is happening in there is going to keep happening, unless you get help from a professional. Really, I could have tried to smother my spasms with all sorts of things but they would have kept breaking through all that stuff. And, as my readers all know, they were seizures anyway.
So, I did finish CVCC with a 4.0 & have transferred to Randolph College. I am super-super excited to be there as an Art History/Museum Studies student. This semester I'm starting slow: Studio Art, Contemporary Art, Three Ancient Cities (Rome, Athens, Alexandria), and Special Topics: Art Collecting/Collections. All of this has been in the back of my mind since I saw the interview below, which was so inspiring to me I actually cried at the end for what the world had lost (i.e. a person who is enthusiastic and passionate about something). Kirk Varnedoe helped me to understand that I did not have to be an intellectual to understand some forms of art, especially abstract art. This was back in 2003 & I had caught it by accident. Actually, maybe it was just fate.
It's about an hour so I understand if you don't watch it, but you should some day!
http://www.charlierose.com/view/interview/1835
It's dark & rainy here right now, which is great -- it reminds me fall is coming. Well, I should do a bit of housework & be a good wife and mother! Ha!
The bottom line is, I can drive, work, dress the girls, wash their hair, chop parsley -- which is all important in my recovery, but some days I worry. I learned at work when I tried to lift a stack of books over my head onto a shelf above me, that the arm still has some ways to go. It gave out and all the books came back & hit me & the floor.
Tomorrow is my last dose of Keppra (hooray!). Then I'll only be on my thyroid medicine, iron supplements for anemia, and that nasty warfarin sodium (only through October). I actually made a list of my leftover medications for the Free Clinic when I contacted them about a drug donation (Virginia doesn't seem to have a drug take-back program anywhere) but they can't take them unsealed. But while writing out the list -- Dilantin, Keppra, Lisinopril, Dexamethasone, Phenytoin, Synthroid (different dose) -- each of those drugs has a specific meaning and memory for me (all bad). Looking at them was proof of how far I have come. It's hard to see it day by day, but when I realize I couldn't even hold my left arm up at all, I can acknowledge my progress.
Also in the medicine cabinet were the supplements I bought BEFORE the diagnosis, when I wasn't feeling well & just thought I needed to be healthier: a gigantic bottle of 600 mg calcium supplements, Vitamin D-400 I.U., Vitamin B6 (wrong, should have bought B12), and 500mg Vitamin C. I was taking a woman's all-purpose vitamin too. For the January spasms (good name for a band, no?), which I thought were just caused by stress from (you name it!) -- images from the Haitian earthquake, the Appomattox massacre, feeling overworked at the bookstore during the Christmas season during finals, heavy snow & 18 days straight with the girls (& no car) while Ethan did snow removal at LC, and then going back to school 2nd semester, I had purchased: Valerian Root 530mg for sleep, Visine-A allergy relief for my bloodshot/swollen eyes (crying, allergies, who knows?), Bach's Rescue Remedy for anxiety, and Boron's homeopathic gelsemium sempervirens for "stage fright/apprehension" for my upcoming public speaking class. God. I wanted to depress my system so much to stop those muscle spasms from happening. I was so worried about being embarrassed having a spasm in public. But my head kept throbbing and my pulse pounded in my right ear, keeping me awake, and luckily it all led me to an MRI machine. Dang! It was all in my head!
I think we just want to medicate ourselves because we're afraid the problem may be worse than we thought. The thing is, the body is neutral, whatever is happening in there is going to keep happening, unless you get help from a professional. Really, I could have tried to smother my spasms with all sorts of things but they would have kept breaking through all that stuff. And, as my readers all know, they were seizures anyway.
So, I did finish CVCC with a 4.0 & have transferred to Randolph College. I am super-super excited to be there as an Art History/Museum Studies student. This semester I'm starting slow: Studio Art, Contemporary Art, Three Ancient Cities (Rome, Athens, Alexandria), and Special Topics: Art Collecting/Collections. All of this has been in the back of my mind since I saw the interview below, which was so inspiring to me I actually cried at the end for what the world had lost (i.e. a person who is enthusiastic and passionate about something). Kirk Varnedoe helped me to understand that I did not have to be an intellectual to understand some forms of art, especially abstract art. This was back in 2003 & I had caught it by accident. Actually, maybe it was just fate.
It's about an hour so I understand if you don't watch it, but you should some day!
http://www.charlierose.com/view/interview/1835
It's dark & rainy here right now, which is great -- it reminds me fall is coming. Well, I should do a bit of housework & be a good wife and mother! Ha!
Thursday, June 3, 2010
"...with my mind on my money & my money on my mind..."
Well, things seem to be stabilizing for me, or perhaps it's just a good day. Physical & occupational therapy has ended, and I'm on my own to continue to rehab myself (did a little weeding with the gimpy hand this morning). I turned in my availability at work (sad face) but it was nice to go in & see some people who seemed like they actually missed me (smile). Two of my least favorite employees (immature boys, like, ages 19 & 21) have flown the coop, so no more lame conversations, teasing, and racist jokes -- woohoo! There's just that certain demographic I have nothing in common with, the local "country-boy-let's-hit-ourselves-over-the-head-with-beer-bottles-and-run-over-our-ex-girlfriend's-stuff-in-our-trucks-(interchangeable with "shooting-up-said-stuff-with-guns-or-rifles") segment.
I met with my neurologist, Dr. Wallace, yesterday, & he thought things were great. In about two weeks, no more Dilantin (yay!), but I'll keep the Keppra & Coumadin up for several more months. I got the "okay" to drive. I quit the Lisinopril on my own & my month-long cough disappeared in a few days (bad side effect). I'll have to monitor my blood pressure through check-ups or get something new to take.
Still working on school assignments, taking my public speaking class, wondering what to do with the kids this summer being so broke...we didn't qualify for any financial assistance with the remainder of what we owe for the deductible or out-of-pocket. Not a huge surprise but -- how can the state look at our gross income & "assets" (being an 11-year-old Subaru & Ethan's 401K, which we cannot touch) and not even count living expenses? I mean, really. We are certainly not living in poverty, believe me, but we could technically have some problems on the horizon. When I start work, that will help, but we're two months behind on about everything. At least we have great insurance!
So is there anything different about me? In the head? Actually, there are a few things which may or may not be related to the neurosurgery. I really really really want to be somewhere other than Lynchburg. I'm desperate. Oh well. My imagination seems to have expanded, before I was very happy being settled and safe on our little piece of rented land here. Too anxious/apprehensive to leave is more of the truth.
Also, after this Diego Rivera paper I did for Humanities (did you know he inspired the WPA public murals & Federal Art Programs of FDR's 2nd New Deal?! For real! I had no idea!) I'm ready to visit his murals in Detroit or Mexico City. Who's with me? I dream of getting some sort of internship in Europe & living overseas for a bit with the family. Like I said above I couldn't ever imagine going to Europe -- too scared to fly. But I just want to go somewhere. This city is a stick in the mud.
Like I posted earlier, my motion sickness is better. And headaches.
Somehow I can drink liquor again. I could not stand the stuff after college. Just about every kind. I had not even had a drop of (my most favorite) gin since this one evening in the fall of 1989. Since my mom reads this I won't go into details, hysterical and unfortunate as they may be. All of a sudden this weekend I had a (very weak, lots of limes) gin & tonic with Ethan & his Uncle Rennie. It was good. I can't really drink because of my medications so I just sipped very slowly. Mmm, gin, "it had been so long". This is quite a strange thing...I mean, why would this happen -- being able to drink this stuff again all of a sudden?
Anyway, enough pontificating for now. Got another appointment.
I met with my neurologist, Dr. Wallace, yesterday, & he thought things were great. In about two weeks, no more Dilantin (yay!), but I'll keep the Keppra & Coumadin up for several more months. I got the "okay" to drive. I quit the Lisinopril on my own & my month-long cough disappeared in a few days (bad side effect). I'll have to monitor my blood pressure through check-ups or get something new to take.
Still working on school assignments, taking my public speaking class, wondering what to do with the kids this summer being so broke...we didn't qualify for any financial assistance with the remainder of what we owe for the deductible or out-of-pocket. Not a huge surprise but -- how can the state look at our gross income & "assets" (being an 11-year-old Subaru & Ethan's 401K, which we cannot touch) and not even count living expenses? I mean, really. We are certainly not living in poverty, believe me, but we could technically have some problems on the horizon. When I start work, that will help, but we're two months behind on about everything. At least we have great insurance!
So is there anything different about me? In the head? Actually, there are a few things which may or may not be related to the neurosurgery. I really really really want to be somewhere other than Lynchburg. I'm desperate. Oh well. My imagination seems to have expanded, before I was very happy being settled and safe on our little piece of rented land here. Too anxious/apprehensive to leave is more of the truth.
Also, after this Diego Rivera paper I did for Humanities (did you know he inspired the WPA public murals & Federal Art Programs of FDR's 2nd New Deal?! For real! I had no idea!) I'm ready to visit his murals in Detroit or Mexico City. Who's with me? I dream of getting some sort of internship in Europe & living overseas for a bit with the family. Like I said above I couldn't ever imagine going to Europe -- too scared to fly. But I just want to go somewhere. This city is a stick in the mud.
Like I posted earlier, my motion sickness is better. And headaches.
Somehow I can drink liquor again. I could not stand the stuff after college. Just about every kind. I had not even had a drop of (my most favorite) gin since this one evening in the fall of 1989. Since my mom reads this I won't go into details, hysterical and unfortunate as they may be. All of a sudden this weekend I had a (very weak, lots of limes) gin & tonic with Ethan & his Uncle Rennie. It was good. I can't really drink because of my medications so I just sipped very slowly. Mmm, gin, "it had been so long". This is quite a strange thing...I mean, why would this happen -- being able to drink this stuff again all of a sudden?
Anyway, enough pontificating for now. Got another appointment.
Saturday, May 1, 2010
What's Happenin'?
Howdy. A lot has happened since I last wrote, not necessarily to me, but it's been quite busy. We had visitors in town after my last hospitalization: a huge heaping of gratitude to Mariam and family -- hanging out on the deck the afternoon you left made me realize how much Ethan & I have missed being social beings. Why'd you guys have to move away?! (I know why, because we would have too if it had been us!). Cousin Buffy came up from North Carolina to be my personal chauffeur & must have been so bored, being a 23 year old stuck in Lynchburg. Her mom, Ethan's Aunt Candy, showed up mid-week & took over, bringing food, cooking, and exhibiting the familiar trait of fast & furious DeSilvey cleaning (Ethan did not inherit this, though he does dig a mean garden). I also got Candy's fiance's recipe for Pimiento Cheese Spread, which I devoured. I remember people ordering this when I worked at Timberlake's Soda Fountain in Charlottesville in high school and thinking it was gross. But Louie has learned me!
A special thank you to my friend Barb, who brought us 4 or 5 meals, even though she is a mother of 3, nannies for 2, is a Girl Scout leader, a volunteer, and super-wife. She will be taking me to campus 3 nights a week in May so we can both cower our way through the required (& dreaded) public speaking class at CVCC. We talk politics too often and agree our new governor makes us both cry.
Yesterday was my last day of physical therapy. Legs are done! I could have used more time but my insurance only covers 30 visits and my arm/hand needs more attention than the legs. I still will have occupational therapy. My gait isn't totally normal but that also has a lot to do with my arm throwing off my balance. My arm is all about trouble these days. Mischief maker! There's always something going on. Besides the periods of it feeling like it's numb or asleep, my ring finger and pinky are not getting the message to shape up. I'm trying to use them typing here but it's slow. My grip is good (from 6 lbs to 21 lbs), but I'm still at around 20% recovered, and the goal is 40% since it's my non-dominant hand. I have a very strange clicking in my shoulder, which I try to avoid, because the sensation is like a mini-dislocation. However, I have been told by the great ladies who have been working on me I have a non-gliding scapula, which is causing the humerus to catch. It is not a nice sensation. I still can't pull anything, like wet clothes out of the washer or the bottom dishwasher rack without a nasty crick-crack of pain or weird stuff rearranging itself. I'm working on stretching out the scapula by reaching into cabinets, washing my hair with both hands, and putting my shirt on over my head. My OT Candice had me playing Connect 4 yesterday. Except here in therapy, I get a 2-lb weight on my wrist, have to reach 3 feet up to retrieve my black checker from the top of this platform, get a pair of pinchers, put the checker in the pinchers (pinching with my left hand), and lift it up into the Connect 4 plastic holder and drop it in. We played 6 games of this. But I didn't cry! Just worked through it.
I did a little planting in the garden to use my left hand (parsley, marigolds (I noticed I bought the "Disco" variety (wha?), and a nice big Columbine). It was a good exercise for my hand but also frustrating because it takes forever. I told Ethan: "I am SO over this". Of course, taking your time in the garden isn't a bad thing. I saw a mound of dirt moving & saw an insect I'd never seen before, watched the worms wriggling around, even the half-worms Ethan created by turning the garden over. Poor guys. I listened to all of the birds in the trees, watched Odette pretending to be a tiger in the grass...Right now she's at the window sill eating moths and mayflies. I also pruned our gigantic Rosemary shrub in the front, I took off about 15 2-foot branches. Anyone need any?!
I still am over medicated and asked for "incompletes" for my classes. I'll have until July to finish but I'll aim for the end of May. I am confused easily, forget the words for things, space out, my face has been breaking out since my time in UVA Hosp. I haven't had zits for years, since I stopped caking makeup on my face (they like that in the south). Bummer. My friend Mariam treated me to a haircut when she visited, which was nice. I was so self-conscious of my hair and scar but the hair dresser was great (Amanda Caldwell, Hair Dimensions, near the Boonsboro Kroger).
What else can I say? Not much. I'm here, haven't gone back to work yet, but I need to -- we're feeling the pinch. I'll still be gimpy but luckily it's not a super-physical job.
This is cousin Buffy with Bea
An old Missoula friend, from '01-'02 days, Sam, came through on his way up the Appalachian Trail & stayed 3 days, 2 nights. He rested, cooked, cleaned, entertained the kids -- it was great. His wife Jen is in Madison, WI, working as a nurse & hanging with the 2 kids. Saint Jenny!
Our old friend Sam taking a break from the Appalachian Trail
A special thank you to my friend Barb, who brought us 4 or 5 meals, even though she is a mother of 3, nannies for 2, is a Girl Scout leader, a volunteer, and super-wife. She will be taking me to campus 3 nights a week in May so we can both cower our way through the required (& dreaded) public speaking class at CVCC. We talk politics too often and agree our new governor makes us both cry.
Yesterday was my last day of physical therapy. Legs are done! I could have used more time but my insurance only covers 30 visits and my arm/hand needs more attention than the legs. I still will have occupational therapy. My gait isn't totally normal but that also has a lot to do with my arm throwing off my balance. My arm is all about trouble these days. Mischief maker! There's always something going on. Besides the periods of it feeling like it's numb or asleep, my ring finger and pinky are not getting the message to shape up. I'm trying to use them typing here but it's slow. My grip is good (from 6 lbs to 21 lbs), but I'm still at around 20% recovered, and the goal is 40% since it's my non-dominant hand. I have a very strange clicking in my shoulder, which I try to avoid, because the sensation is like a mini-dislocation. However, I have been told by the great ladies who have been working on me I have a non-gliding scapula, which is causing the humerus to catch. It is not a nice sensation. I still can't pull anything, like wet clothes out of the washer or the bottom dishwasher rack without a nasty crick-crack of pain or weird stuff rearranging itself. I'm working on stretching out the scapula by reaching into cabinets, washing my hair with both hands, and putting my shirt on over my head. My OT Candice had me playing Connect 4 yesterday. Except here in therapy, I get a 2-lb weight on my wrist, have to reach 3 feet up to retrieve my black checker from the top of this platform, get a pair of pinchers, put the checker in the pinchers (pinching with my left hand), and lift it up into the Connect 4 plastic holder and drop it in. We played 6 games of this. But I didn't cry! Just worked through it.
Our beautiful chives -- under-appreciated blooms
I did a little planting in the garden to use my left hand (parsley, marigolds (I noticed I bought the "Disco" variety (wha?), and a nice big Columbine). It was a good exercise for my hand but also frustrating because it takes forever. I told Ethan: "I am SO over this". Of course, taking your time in the garden isn't a bad thing. I saw a mound of dirt moving & saw an insect I'd never seen before, watched the worms wriggling around, even the half-worms Ethan created by turning the garden over. Poor guys. I listened to all of the birds in the trees, watched Odette pretending to be a tiger in the grass...Right now she's at the window sill eating moths and mayflies. I also pruned our gigantic Rosemary shrub in the front, I took off about 15 2-foot branches. Anyone need any?!
I still am over medicated and asked for "incompletes" for my classes. I'll have until July to finish but I'll aim for the end of May. I am confused easily, forget the words for things, space out, my face has been breaking out since my time in UVA Hosp. I haven't had zits for years, since I stopped caking makeup on my face (they like that in the south). Bummer. My friend Mariam treated me to a haircut when she visited, which was nice. I was so self-conscious of my hair and scar but the hair dresser was great (Amanda Caldwell, Hair Dimensions, near the Boonsboro Kroger).
What else can I say? Not much. I'm here, haven't gone back to work yet, but I need to -- we're feeling the pinch. I'll still be gimpy but luckily it's not a super-physical job.
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