Every day, I hurt a little less and feel a little more energetic. I'm still not allowed to do anything, so I have to be very careful. All the same, I can make crafty things and go for walks and eat slightly more ambitious foods. I'm incredibly grateful for how well I'm healing. I do think I'll be racing the clock to get back to work in September. At this point, I'm not even allowed to carry my purse.
I almost forgot how sick I was before the surgery. Matt had me go back and read my blogs because I wasn't sure that I was actually feeling better. I was wrong. I'm WAY better. No shakes, no arthritis, few headaches that aren't located in the immediate surgical site, very little nausea, and I'm only sleeping about 9 hours a day, which is borderline miraculous.
I'm trying to formulate a little recovery plan which includes substantial weight loss. The only exercise I'm allowed is a slow-paced stroll, so I plan to stroll a little farther everyday. I also plan to eat small meals preceded by a very large medium-to-dark green salad sans dressing, other than breakfast. The only thing I can handle at breakfast is one piece of white toast with a little bit of butter and hot tea. About half an hour later, I can manage to get down some fruit without wanting to hurl.
I'm thinking about starting a happiness project. It's normally a bit hokey for my taste, and I think it's my mother's genetic material expressing more dramatically as I age. Of course, she's consistently pretty happy, regardless of life's little curve balls, so perhaps there's something to it all.
By the way, I won the Bravo Award.
Wednesday, June 2, 2010
Saturday, May 29, 2010
Life: Post-Crainiotemy
So the surgery is over. As you've probably guessed by now, I woke up and haven't lost any substanial life functions. My head is finally clear enough that I can think and stay on track with something for at least long enough to blog about it.
There are subtle differences between what my life was and what it's metamorphosing into. I still feel like shit (physically) most of the time. It gets better every day, even if only by a little bit. I'm hopeful, but not too hopeful, mostly due to my ridiculous fear of disappointment. I suddenly have a sense of smell again. She had taken a hiatus while I was a freshman in high school, and (most likely having found a nicer locale,) had seemed destined never to return. While her homecoming has been welcome, she's a dramatic little bitch and now everything tastes funny.
I'm finally able to resume some creative pursuits again. It's tough, given that I can't turn my head or pick up anything that is heavier that 5 pounds, but anything is better than nothing. I even did a bunch of mending, for christ's sake. Being out of bed is fabulous. To be honest, my body is so sore from lying still and doing nothing that being in bed is now almost too physically taxing to be considered unless I am in a medication-induced slumber. I want to do yoga so badly it's tonto. I love that word. There is no reasonable, single-word English equivalent. Tonto is like a cross between ridiculously stupid and soft in the head. My mind is still pretty soft-boiled from the medication and surgical stress, so I can't think about anything that's intellectually stressful for very long, meaning that working on my thesis and the course outlines I've been re-writing are right out. Reading my email is stressful, for fuck's sake.
Not that I'm not exceedingly grateful. EXCEEDINGLY.
I woke up. I'm not a vegetable, I don't require machines to eat and/or breathe, and all my extremities seem to be functioning as designed. At some point, my neurosurgeon will allow my fiancee and I to resume sexual relations and I'll be able to do yoga and ride my tricycle and build things and go back to work.
I'd like everyone to know that our society does a SHITTY job of including the disabled in regular life. FYI. While I'm allowed and encouraged to take little walks everyday, long walks or shopping are right out. Sometimes I use my own chair, but it's the sort of thing the hospital lends you and is awful in every way from the worn out brakes to the lack of foot rests (wtf?) Often, I depend on those electric scooter things in stores or I can simply forget it, because Matt can't push me and the cart at the same time. Last person forgot to charge it? I'm SOL. The best is when the customer service person says "oh, I don't think that's been working for a while." WELL, FIX IT ALREADY, ASSHOLE! Today, I got to ride in one of those humiliating multiple child seats designed for beleaguered moms with multiple spawn. My favorite part is how people give me dirty looks when I get out of my chair and walk somewhere. I feel like I need to wear a sign that says "my legs are fine. It's my spinal cord that's the problem, dipshit."
There are subtle differences between what my life was and what it's metamorphosing into. I still feel like shit (physically) most of the time. It gets better every day, even if only by a little bit. I'm hopeful, but not too hopeful, mostly due to my ridiculous fear of disappointment. I suddenly have a sense of smell again. She had taken a hiatus while I was a freshman in high school, and (most likely having found a nicer locale,) had seemed destined never to return. While her homecoming has been welcome, she's a dramatic little bitch and now everything tastes funny.
I'm finally able to resume some creative pursuits again. It's tough, given that I can't turn my head or pick up anything that is heavier that 5 pounds, but anything is better than nothing. I even did a bunch of mending, for christ's sake. Being out of bed is fabulous. To be honest, my body is so sore from lying still and doing nothing that being in bed is now almost too physically taxing to be considered unless I am in a medication-induced slumber. I want to do yoga so badly it's tonto. I love that word. There is no reasonable, single-word English equivalent. Tonto is like a cross between ridiculously stupid and soft in the head. My mind is still pretty soft-boiled from the medication and surgical stress, so I can't think about anything that's intellectually stressful for very long, meaning that working on my thesis and the course outlines I've been re-writing are right out. Reading my email is stressful, for fuck's sake.
Not that I'm not exceedingly grateful. EXCEEDINGLY.
I woke up. I'm not a vegetable, I don't require machines to eat and/or breathe, and all my extremities seem to be functioning as designed. At some point, my neurosurgeon will allow my fiancee and I to resume sexual relations and I'll be able to do yoga and ride my tricycle and build things and go back to work.
I'd like everyone to know that our society does a SHITTY job of including the disabled in regular life. FYI. While I'm allowed and encouraged to take little walks everyday, long walks or shopping are right out. Sometimes I use my own chair, but it's the sort of thing the hospital lends you and is awful in every way from the worn out brakes to the lack of foot rests (wtf?) Often, I depend on those electric scooter things in stores or I can simply forget it, because Matt can't push me and the cart at the same time. Last person forgot to charge it? I'm SOL. The best is when the customer service person says "oh, I don't think that's been working for a while." WELL, FIX IT ALREADY, ASSHOLE! Today, I got to ride in one of those humiliating multiple child seats designed for beleaguered moms with multiple spawn. My favorite part is how people give me dirty looks when I get out of my chair and walk somewhere. I feel like I need to wear a sign that says "my legs are fine. It's my spinal cord that's the problem, dipshit."
Sunday, January 24, 2010
Panic sets in.
So I'm trying to blast my way through my thesis while prepping for the Bravo Awards site visit, grading finals, learning to crochet so it's second nature after my surgery, spending time with my son, and trying very, very hard not to panic.
I'm so damn freaked out. I mean, sure, who wouldn't be. However, I'm rather used to having everything very together and I'm not doing such a hot job on that right now.
Fuck you, world. Can you cut me some slack for a few months so I can do the things I really want to do while I still can? I mean, sure, I'll mostly be back to normal within 6 months to a year, but DAMN IT there are things I will never ever be able to do again, and I'm sure as shit not doing them right now AM I?
No. I'm reading study after study on an educational practice that I find iffy at best (and/or worst) because frankly, so far no one has ever conclusively proven that it does fuck-all despite over 30 years of it in the American classroom. But since we're all bracing for more layoffs, I really do need to finish my Masters in time, just-in-case. How sick and sad that I've spent 9 years in the classroom-an award winning educator-yet I'm still quaking in my New Rocks over layoffs like some 1st year intern. So, instead of heading down to Disneyland with my brilliant child and the LOML on Monday to ride a looping rollercoaster for the first (and likely last) time in my life, I will instead be reading another 10 tragically boring journals on a topic I really couldn't give two shits about. Instead of spending the weekend in San Fransisco roaming my second-favorite city in the world with a wonderful man that I would love to share it with (sorry NYC, you're #4,) I'm going to instead grade epically awful essays and TRY to focus on the slowly blooming aesthetic perception and valuing that lies beneath the horrendous grammar and stunted vocabulary of shamefully under-served urban minority youth.
I'm glad we did the Grammys last year. I don't think I'm strong enough this year for them. I know I couldn't possibly get a dress made in time, and frankly, I don't want to put that kind of effort into a gown that I will hopefully never, ever be able to wear because I will never, ever be this fat again. Not that I worked out today, or anything. But then, I'm hardly eating too. I can barely eat these days. Even when I'm hungry, everything sounds awful. The thought of eating chocolate, once my great joy, makes my stomach turn a little.
I've been "forgetting" to make the appointment for the estate lawyer. It's not on purpose, I just only ever seem to remember after the end of the business day. Hell, I never remember until after midnight.
I want to plan our wedding. I need to do my taxes. My heart and soul and every fiber of my being screams out to create some lasting thing of meaning and beauty and I just can't do it right now because I'm racing the clock so that when I finally can get out of bed and get on with my life I'll have a life to go back to.
I better not fucking die from this because I'll have left far too much undone and it would just be horrendous. And I better get around to writing that "advance directive" because it would actually be a fate worse than death to be an uncommunicative prisoner in my husk of slowly atrophying flesh lying there thinking about all the things I never finished.
Fuck.
I'm more than a wee bit depressed with all of this.
I'm exceeding lucky and thankful for Matt. How he puts up with me I'll never know.
I'm so damn freaked out. I mean, sure, who wouldn't be. However, I'm rather used to having everything very together and I'm not doing such a hot job on that right now.
Fuck you, world. Can you cut me some slack for a few months so I can do the things I really want to do while I still can? I mean, sure, I'll mostly be back to normal within 6 months to a year, but DAMN IT there are things I will never ever be able to do again, and I'm sure as shit not doing them right now AM I?
No. I'm reading study after study on an educational practice that I find iffy at best (and/or worst) because frankly, so far no one has ever conclusively proven that it does fuck-all despite over 30 years of it in the American classroom. But since we're all bracing for more layoffs, I really do need to finish my Masters in time, just-in-case. How sick and sad that I've spent 9 years in the classroom-an award winning educator-yet I'm still quaking in my New Rocks over layoffs like some 1st year intern. So, instead of heading down to Disneyland with my brilliant child and the LOML on Monday to ride a looping rollercoaster for the first (and likely last) time in my life, I will instead be reading another 10 tragically boring journals on a topic I really couldn't give two shits about. Instead of spending the weekend in San Fransisco roaming my second-favorite city in the world with a wonderful man that I would love to share it with (sorry NYC, you're #4,) I'm going to instead grade epically awful essays and TRY to focus on the slowly blooming aesthetic perception and valuing that lies beneath the horrendous grammar and stunted vocabulary of shamefully under-served urban minority youth.
I'm glad we did the Grammys last year. I don't think I'm strong enough this year for them. I know I couldn't possibly get a dress made in time, and frankly, I don't want to put that kind of effort into a gown that I will hopefully never, ever be able to wear because I will never, ever be this fat again. Not that I worked out today, or anything. But then, I'm hardly eating too. I can barely eat these days. Even when I'm hungry, everything sounds awful. The thought of eating chocolate, once my great joy, makes my stomach turn a little.
I've been "forgetting" to make the appointment for the estate lawyer. It's not on purpose, I just only ever seem to remember after the end of the business day. Hell, I never remember until after midnight.
I want to plan our wedding. I need to do my taxes. My heart and soul and every fiber of my being screams out to create some lasting thing of meaning and beauty and I just can't do it right now because I'm racing the clock so that when I finally can get out of bed and get on with my life I'll have a life to go back to.
I better not fucking die from this because I'll have left far too much undone and it would just be horrendous. And I better get around to writing that "advance directive" because it would actually be a fate worse than death to be an uncommunicative prisoner in my husk of slowly atrophying flesh lying there thinking about all the things I never finished.
Fuck.
I'm more than a wee bit depressed with all of this.
I'm exceeding lucky and thankful for Matt. How he puts up with me I'll never know.
Saturday, January 16, 2010
So much for that Masters helping me with job security.
I'm trying to get my homework done for GED 691. She assigned 70 pages of reading in addition to working on our thesis, and frankly, it's a bit much. I've got a pretty nasty headache today, and standing up is something I'm going to need to avoid for the rest of the day. Thank goodness for the adjustable bed. I'm actually able to work on my laptop while supported enough to be comfortable.
I'm scared about next year. The numbers for the education budget for next year are really, really bleak. I'm nervous about getting laid off, and I don't think I'm going to get moved up. Even though my admin credential is done and my Masters will be done this summer, I'm not really going to be in suitable condition for job hunting over the summer. That was my contingency plan when I started my Masters 2 years ago; if I got laid off, I could find work as an Assistant Principal somewhere.
Complicating the matter is the fact that keeping my current insurance is now a life-or-death matter.
I'm completely freaked that I'm going to get laid off in July and not be able to afford my mortgage, let alone my COBRA payment. If that happens, I won't get adequate post op care (let alone the corrective surgeries that 25-30% of patients need.) I'm scared I'm going to lose my job, lose my insurance, lose my house, develop hydrocephalus, get meningitis, and die.
Scared enough that it makes me cry when I think about it and keeps me up at night.
I'm scared about next year. The numbers for the education budget for next year are really, really bleak. I'm nervous about getting laid off, and I don't think I'm going to get moved up. Even though my admin credential is done and my Masters will be done this summer, I'm not really going to be in suitable condition for job hunting over the summer. That was my contingency plan when I started my Masters 2 years ago; if I got laid off, I could find work as an Assistant Principal somewhere.
Complicating the matter is the fact that keeping my current insurance is now a life-or-death matter.
I'm completely freaked that I'm going to get laid off in July and not be able to afford my mortgage, let alone my COBRA payment. If that happens, I won't get adequate post op care (let alone the corrective surgeries that 25-30% of patients need.) I'm scared I'm going to lose my job, lose my insurance, lose my house, develop hydrocephalus, get meningitis, and die.
Scared enough that it makes me cry when I think about it and keeps me up at night.
Monday, January 11, 2010
What a day.
I told my stage crew kids today. They've been eying me suspiciously and repeatedly asking if I'm okay. I figured I probably should tell them that I don't have cancer, so they will stop worrying. Now that I've notified my principal and my director at the district office, I was finally able to tell them. I think they've suspected much more than everyone else, because they spend so much time with me. They took it really hard. I think it's really difficult for them to think of me as mortal and fallible. I tried to parse it in as hopeful terms as I could; I know that's what's been helping me cope.
Our new bed arrived today. I'm so glad we took this leap. I'm finally comfortable for the first time in ages. The mattress arrived last week, and I've had the best sleep I can remember. Sound, deep, and painless. I'm used to waking up in pain a few times a night, but since we started sleeping on the new mattress I've slept soundly and peacefully straight through every night.
I need to make a consult appointment for my end-of-life paperwork. I've got my estate all figured out, but I'm sorta torn on my advance directive. I'm not quite ready to deal with the threat of a persistent vegetative state.
My surgery is most likely going to be April 27th.
Our new bed arrived today. I'm so glad we took this leap. I'm finally comfortable for the first time in ages. The mattress arrived last week, and I've had the best sleep I can remember. Sound, deep, and painless. I'm used to waking up in pain a few times a night, but since we started sleeping on the new mattress I've slept soundly and peacefully straight through every night.
I need to make a consult appointment for my end-of-life paperwork. I've got my estate all figured out, but I'm sorta torn on my advance directive. I'm not quite ready to deal with the threat of a persistent vegetative state.
My surgery is most likely going to be April 27th.
Friday, January 1, 2010
Preparations, Preparations
I have a credit card whose "Universal Terms Of Service" changed in such a way that I REFUSE to continue to patronize such an evil, underhanded corporation. You may recall that Citicard decided a few months back that they were going to charge all cardholders 30% APR, regardless of credit score. Well, screw that! I got a new, far more agreeable credit card, but have been trying to figure out what to do with my rewards points before my card expires.
Well, it turns out that I can buy a memory foam mattress with them. DONE, AND DONE! We also found a motorized adjustable frame that fits in our antique frame for just under a grand, and free shipping. Let me first say that spending this kind of cash when I'm about to go on medical leave completely freaks me out. Initially, I had decided to borrow a recliner, but Caddy stated that he was totally unwilling to have me sleep in a recliner in the other room for a year. I looked at bed wedges, but they were small, and they were 300 bucks for the set! So today, Caddy decided that he was going to buy us a motorized frame. He's decided that he would rather learn to sleep sitting up than learn to sleep without me.
I hate spending this kind of money right now, even if it's not my money and it's not really optional. What if we need it later? ARRGH! But sleeping propped up on pillows sucks and my hips are killing me from bearing all my weight as I sleep. My back hurts, my shoulders hurt, I keep waking up all night, and I'm having INSANE nightmares. Plus, my life will be in bed for MONTHS. I know this is important. I still hate spending the money, though. We've decided to plan the wedding as cheaply as possible; that way, if I'm on leave forever and we have to live on our savings, we won't lose deposits. We've also decided to have one of our two registry options be to put money into our honeymoon account.
Elaine found me the perfect adjustable laptop cart. I might try to pick it up tomorrow.
So far, so good.
Well, it turns out that I can buy a memory foam mattress with them. DONE, AND DONE! We also found a motorized adjustable frame that fits in our antique frame for just under a grand, and free shipping. Let me first say that spending this kind of cash when I'm about to go on medical leave completely freaks me out. Initially, I had decided to borrow a recliner, but Caddy stated that he was totally unwilling to have me sleep in a recliner in the other room for a year. I looked at bed wedges, but they were small, and they were 300 bucks for the set! So today, Caddy decided that he was going to buy us a motorized frame. He's decided that he would rather learn to sleep sitting up than learn to sleep without me.
I hate spending this kind of money right now, even if it's not my money and it's not really optional. What if we need it later? ARRGH! But sleeping propped up on pillows sucks and my hips are killing me from bearing all my weight as I sleep. My back hurts, my shoulders hurt, I keep waking up all night, and I'm having INSANE nightmares. Plus, my life will be in bed for MONTHS. I know this is important. I still hate spending the money, though. We've decided to plan the wedding as cheaply as possible; that way, if I'm on leave forever and we have to live on our savings, we won't lose deposits. We've also decided to have one of our two registry options be to put money into our honeymoon account.
Elaine found me the perfect adjustable laptop cart. I might try to pick it up tomorrow.
So far, so good.
Welcome 2010
2009 officially sucked. But now it's 2010, and I'm going to have a great year. I had a great time with my co-parents Andrew and Heather last night. It's nice to be able to spend grown-up time with them; they're such great people. No nightmares last night! I woke up really early, reconfigured eight pillows into the 45 degree angle the doctor recommended, and it actually WORKED. I got another 5 hours of restful sleep. My hips hurt, though. All the pressure is on them if I sleep with my head and legs elevated. I think if I can figure out the foam wedges/pads (or if we break down and buy a new adjustable foam bed) that will be less of a problem.
I've decided I'm going to try to gain a bunch of muscle and loose a lot of fat prior to my surgery. I know that will make a HUGE difference in how quickly I recover, so I'm going to do it. I've been doing pilates and lost about 5lbs over break. I just need to keep at it and not get lazy once I go back to work. Now that I know why I feel so crappy and that "rest" won't cure me, I'm ready to push through the pain and keep going. I'm glad the doc gave me a disabled person parking placard. Having to walk far to my car, while good for me, is SCARY when I'm alone. I got really confused the other day and it freaked me out. I'm playing lots of little puzzle games to help me with my memory. I don't know if it's helping or not, but it's what all the "living with Chiari" websites and guides tell me to do. I have an appointment with my neurologist in a few more days so she can talk to me about it.
I found out yesterday afternoon that one of my coworkers, Bobby Salcedo, was kidnapped and murdered while visiting his wife's family in Mexico. I'm so horrified by this. He was a genuinely good guy, and did so much GOOD in a community that desperately needed him. My heart goes out to his wife, who watched, helpless, as the gunmen took him away. It's all so very tragic. I really liked him as a person too. He had a great sense of humor, and was so smart. I always enjoyed the chance to talk to him. He was the Assistant Principal of Activities at South when I decided I was going to start shaving the back of my head again. It was only my second year, and I wasn't sure if that was in conflict with some sort of policy. I asked him about it, and he told me to go for it. We did so many great, new things for the kids those two years. I was so sad when most of what we started ended after he left for Mountain View. He was a wonderful leader in Drew's district. Actually, he was part of the reason I moved Drew there in the first place! The city of El Monte is definitely far worse off than they were 2 days ago. Tragic.
I've decided I'm going to try to gain a bunch of muscle and loose a lot of fat prior to my surgery. I know that will make a HUGE difference in how quickly I recover, so I'm going to do it. I've been doing pilates and lost about 5lbs over break. I just need to keep at it and not get lazy once I go back to work. Now that I know why I feel so crappy and that "rest" won't cure me, I'm ready to push through the pain and keep going. I'm glad the doc gave me a disabled person parking placard. Having to walk far to my car, while good for me, is SCARY when I'm alone. I got really confused the other day and it freaked me out. I'm playing lots of little puzzle games to help me with my memory. I don't know if it's helping or not, but it's what all the "living with Chiari" websites and guides tell me to do. I have an appointment with my neurologist in a few more days so she can talk to me about it.
I found out yesterday afternoon that one of my coworkers, Bobby Salcedo, was kidnapped and murdered while visiting his wife's family in Mexico. I'm so horrified by this. He was a genuinely good guy, and did so much GOOD in a community that desperately needed him. My heart goes out to his wife, who watched, helpless, as the gunmen took him away. It's all so very tragic. I really liked him as a person too. He had a great sense of humor, and was so smart. I always enjoyed the chance to talk to him. He was the Assistant Principal of Activities at South when I decided I was going to start shaving the back of my head again. It was only my second year, and I wasn't sure if that was in conflict with some sort of policy. I asked him about it, and he told me to go for it. We did so many great, new things for the kids those two years. I was so sad when most of what we started ended after he left for Mountain View. He was a wonderful leader in Drew's district. Actually, he was part of the reason I moved Drew there in the first place! The city of El Monte is definitely far worse off than they were 2 days ago. Tragic.
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