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.
Friday, January 1, 2010
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.
Thursday, December 31, 2009
Well, that was successful.
I didn't have to explain much of anything to anyone, and the outpouring of love and support was incredible. I'm so grateful for everyone.
I actually managed to dance for half of three songs, and made it through the night feeling great.
I'm no slower today than any other day. I've got a pretty rockin' headache, but I don't dare take a Midrin or I can forget about drinking tonight. Freaky nighmares continue. In last night's episode, I had to rescue a 3-eyed, 1 year old baby that weighed 6 pounds and looked like a newborn from it's drug addict parents who made open declarations about hating the child. I've totally had enough of the nightmares.
I actually managed to dance for half of three songs, and made it through the night feeling great.
I'm no slower today than any other day. I've got a pretty rockin' headache, but I don't dare take a Midrin or I can forget about drinking tonight. Freaky nighmares continue. In last night's episode, I had to rescue a 3-eyed, 1 year old baby that weighed 6 pounds and looked like a newborn from it's drug addict parents who made open declarations about hating the child. I've totally had enough of the nightmares.
Wednesday, December 30, 2009
Outing my condition on teh facebooks.
Now it's out in the universe. Now you all know.
I still can't believe this is really happening.
I still can't believe this is really happening.
The Truth About My "Recent" Illness
The truth about my “recent” illness.
I normally keep my medical problems to myself, but I’m afraid this is getting rather difficult to hide, and will only become more so. Rather than have people speculating about what’s wrong with me as while being too embarrassed to ask, I decided to do all of us a favor and “out” my condition publicly.
The truth about my recent illness is that it’s not recent at all. Many of you know that I’ve lived with chronic pain, fatigue, and other rather awful medical problems since high school. Anyone who’s seen me wake up in the morning knows that there is something terribly, terribly wrong with my body. My former LACHSA students and collegues probably remember when I was having fainting spells. For sixteen years, no one has ever had any real answers. Doctors tested me for everything from lupus to rheumatoid arthritis to narcolepsy. I’ve been diagnosed with DeQuervains syndrome, thorassic outlet syndrome, hip dysplasia, migraines, and cataplexy. But those diagnoses only addressed part of my symptoms. Once the blood tests, EKG’s, and nerve tests for the others turned up negative, the doctors would start implying it was all in my head.
It turns out that it is, in fact, all in my head.
Well, partially in my spinal column too.
Every few years, my symptoms flare up in a rather dramatic way. The flu I caught in October made everything much worse; I immediately developed pneumonia. In early November, after two days of having headaches so bad that I couldn’t keep myself upright, couldn’t see, and was dry heaving, Matt (Caddy) made me go the ER. Since I also had a fever, they did a CT out of fear of meningitis. They didn’t find any sign of meningitis.
They found an Arnold-Chiari I Malformation.
From what I’ve read and been told by my neurologist, Chiari is an less common (but not rare) congenital brain deformity where the skull is too small for the brain. The cerebellum grows down into to spinal column, compacting the spinal cord and blocking the flow of spinal fluid from the skull to the spinal column. The estimate is that 1 in 1,500 people have Chiari, although the majority are not symptomatic and do not require treatment. In people who do show symptoms, this results in a variety of weird, seemingly unrelated conditions including numbness and cold in the hands and feet, joint pain and inflammation, nausea, headaches, balance problems, hearing problems, tinnitus, fainting, muscle weakness, and short term memory loss. If left untreated, large herniations will lead to paralysis on one side. My neurologist found a slight delay in my reflexes on my right side earlier this month; supposedly an early sign of things to come. I am having far more severe symptoms than I’ve had in years- possibly the worst since I was 19 and fainting all the time, and had no idea what was wrong with me.
The only treatment is cranial decompression surgery. My neurosurgeon basically needs to make more room in my head so he can move my cerebellum out of my spinal column. There are several variations on the surgery. (Stop reading and skip to next paragraph if you are squeamish.) Unless they find something particularly interesting on my full spine MRI (like a tethered spinal cord or a large rupture in my spinal cord itself,) The surgery is pretty much set. Some time in April they will knock me out, screw a metal cage into my skull to hold my head still, and make a 7-12” incision up the back of my neck and head before sawing into my skull. They will enlarge the opening at the base of my skull, cut a hole in the membrane that surrounds my brain, add a larger patch of artificial membrane, and remove my first vertebrae (C1.)
I will spend the night in the ICU, up to a week in the hospital, and two weeks in bed. I will be able to have EXTREMELY limited activity for the next six weeks. I won’t be able to return to work for about three months (conservatively.) These are averages; I may recover faster, I may recover slower. I may require multiple surgeries.
In 95% of cases, all progression of symptoms stops after one or more surgeries.
About 75% of the time, it only takes one surgery.
About 50% of the time, the symptoms are REVERSED after the first surgery. No headaches, no hearing problems, no balance problems. When the patient wakes up, all symptoms are GONE. Permanently.
About 5% of the time, the patient doesn’t wake up.
From what I understand, the odds are fairly good (at least so far as neurosurgery goes.) Yes, I’m scared. Yes, I will be in a lot of pain. No, it is not optional. But the impending paralysis issue aside, the 50/50 shot of all my medical problems evaporating forever gives me tremendous hope of one day living a mostly “normal” life (physically, anyways.)
I have Kaiser through work, so my medical bills should be fully taken care of. I don’t even have a co-pay. I have a month’s worth of sick days. I don’t qualify for the catastrophic leave/sick day bank because I’m an hourly teacher, but I have 100 days at half pay after my sick days run out. After that, well, who knows, but it’s pretty likely that I’ll be back at work before my medical leave runs out. Caddy has taken wonderful care of me, making sure that I get out of bed for at least a few hours a day, eat, and exercise. He’s done nearly all of the housekeeping, entertains Drew, and drives me around whenever he’s not actually at work.
The handful of people I have told have asked what they can do, and I couldn’t think of anything at the time. However, having had a month to think things over, here’s my list:
1. Lend me DVD’s or Nintendo DSi games. I’ll be in bed for at least a month, and I don’t do boredom well. We don’t have TV or cable, but watching movies on my laptop suits me just fine. Please label them really well; I’ve been having serious problems with short-term memory. I’ll post my surgery date once we know, but don’t worry about it until then.
2. Lend me a really comfy, highly adjustable ergonomic office chair that won’t rub against my incision site. I’m really uncomfortable now, and having a good chair at work and a good chair at home will make a HUGE difference for me. I promise I’ll give them back once I heal up.
3. I need some sort of swing-out-wall-mount or hospital-type rolls-on-the-floor laptop stand so I can swing it in front of me to watch movies in bed. I know these exist, I’ve seen them. If you know where I can buy one, please let me know. I can’t use regular lap desks, or trays that have to touch the bed.
4. Lend me a really comfy recliner. Apparently, I’m supposed to sleep at a 45 degree angle from now until about 6 months after the surgery.
5. While Andrew and Scott are happy to pick Drew up from school while I’m off work, there are times when it’s really hard for them to get there in time. Also, between now and my surgery, I will probably have at least a few days where I will have to leave work before Drew is done with school for the day. If you live in El Monte and it’s not too much of a burden, please offer to be an emergency contact/pick up for Drew.
6. I need a carpool partner for my grad school classes at Cal Poly. I’m in GED 691 and 693, Weds and Thurs. I’m slow and kind of a pain in the rear, but I DO have a disabled placard for parking! I also already have my CPP parking permit. It’s in my purse right now.
7. If you’re handy, please help Caddy soundproof our bedroom so the kids upstairs and the street noise don’t wake me up while I’m trying to recover. We need to replace two windows with double-paned units, install sound deadening insulation, and a thin layer of drywall. We don’t need to paint or anything, I just need to be able to take my pills and sleep through as much of the recovery process as possible. This is a big project, but I think with enough hands it can get done in two weekends.
8. If you’re handy and don’t mind a longer project, please help Caddy finish the bathroom next to our bedroom so I don’t have to walk across the whole darn house to use the toilet. This has been the never-ending project; every time we try to finish it, some other major thing has to get worked on in a tenant’s unit.
9. Once I’m allowed to have visitors, PLEASE visit. I spent a month in bed during my pregnancy, and it was terribly lonely. Bring your laptop and get some work done. Grade papers. Knit. Watch movies with me. Anything. I don’t expect you to be a constant source of entertainment or anything, just a friendly presence.
10. Message and chat with me on Facebook or email. Please don’t text or call after surgery; sleep will be a precious refuge, and I don’t turn off my phone.
11. I would like to have some family portraits with Drew and my fellow co-parents taken before the surgery (you know, when I still have all my hair.) If you have equipment and/or a studio and would be willing to do this without charging us, please let me know.
12. I need a referral for someone who does estate planning/end-of-life decision paperwork. I would like said person to be patient, kind, affordable, and thorough. My will/durable power of attorney/advance directive will probably be rather complex. The chances of me dying are low, but I will feel less scared going into surgery if I feel like all loose ends are tied up.
13. Hope, wish, and or pray for my speedy and thorough recovery, regardless of whatever religion you ascribe to. Any prayers, faithful acts, or spiritual work done on my behalf would be greatly appreciated.
So now you know. So please, no more stepping away from me because you think I have the flu. No walking on eggshells, no carefully phrased questions. If you want to ask me about something, go for it. I won’t be upset. Please be patient with me when I lock myself out of my classroom for the 15th time, and understand when I forget to call you back. Don’t be upset if I have to look for somewhere to sit if we’re going to chat for a while, and don’t be offended if I flake out on our plans because I’m not feeling up to leaving the house. I’m going to try really hard to live as I always have, even though that’s going to be substantially harder for a while. I’m also going to try to go out and “do” things before my surgery. I’m definitely planning on going to Disneyland/DCA before the surgery. Andrew (Drew’s dad) has insisted that I develop a “bucket list,” so if you have any good suggestions let me know.
I’ve been avoiding posting about my medical drama on Facebook, partially because I think it’s an intrusion into other people’s lives. I have a blog I started right after I found out, and have been posting all my Chiari-related stuff there. If you really want to know what’s happening with my health, you can find it here:
http://jennnelson3.blogspot.com/
Please feel free to pass this on to my friends and family who aren’t on Facebook.
I normally keep my medical problems to myself, but I’m afraid this is getting rather difficult to hide, and will only become more so. Rather than have people speculating about what’s wrong with me as while being too embarrassed to ask, I decided to do all of us a favor and “out” my condition publicly.
The truth about my recent illness is that it’s not recent at all. Many of you know that I’ve lived with chronic pain, fatigue, and other rather awful medical problems since high school. Anyone who’s seen me wake up in the morning knows that there is something terribly, terribly wrong with my body. My former LACHSA students and collegues probably remember when I was having fainting spells. For sixteen years, no one has ever had any real answers. Doctors tested me for everything from lupus to rheumatoid arthritis to narcolepsy. I’ve been diagnosed with DeQuervains syndrome, thorassic outlet syndrome, hip dysplasia, migraines, and cataplexy. But those diagnoses only addressed part of my symptoms. Once the blood tests, EKG’s, and nerve tests for the others turned up negative, the doctors would start implying it was all in my head.
It turns out that it is, in fact, all in my head.
Well, partially in my spinal column too.
Every few years, my symptoms flare up in a rather dramatic way. The flu I caught in October made everything much worse; I immediately developed pneumonia. In early November, after two days of having headaches so bad that I couldn’t keep myself upright, couldn’t see, and was dry heaving, Matt (Caddy) made me go the ER. Since I also had a fever, they did a CT out of fear of meningitis. They didn’t find any sign of meningitis.
They found an Arnold-Chiari I Malformation.
From what I’ve read and been told by my neurologist, Chiari is an less common (but not rare) congenital brain deformity where the skull is too small for the brain. The cerebellum grows down into to spinal column, compacting the spinal cord and blocking the flow of spinal fluid from the skull to the spinal column. The estimate is that 1 in 1,500 people have Chiari, although the majority are not symptomatic and do not require treatment. In people who do show symptoms, this results in a variety of weird, seemingly unrelated conditions including numbness and cold in the hands and feet, joint pain and inflammation, nausea, headaches, balance problems, hearing problems, tinnitus, fainting, muscle weakness, and short term memory loss. If left untreated, large herniations will lead to paralysis on one side. My neurologist found a slight delay in my reflexes on my right side earlier this month; supposedly an early sign of things to come. I am having far more severe symptoms than I’ve had in years- possibly the worst since I was 19 and fainting all the time, and had no idea what was wrong with me.
The only treatment is cranial decompression surgery. My neurosurgeon basically needs to make more room in my head so he can move my cerebellum out of my spinal column. There are several variations on the surgery. (Stop reading and skip to next paragraph if you are squeamish.) Unless they find something particularly interesting on my full spine MRI (like a tethered spinal cord or a large rupture in my spinal cord itself,) The surgery is pretty much set. Some time in April they will knock me out, screw a metal cage into my skull to hold my head still, and make a 7-12” incision up the back of my neck and head before sawing into my skull. They will enlarge the opening at the base of my skull, cut a hole in the membrane that surrounds my brain, add a larger patch of artificial membrane, and remove my first vertebrae (C1.)
I will spend the night in the ICU, up to a week in the hospital, and two weeks in bed. I will be able to have EXTREMELY limited activity for the next six weeks. I won’t be able to return to work for about three months (conservatively.) These are averages; I may recover faster, I may recover slower. I may require multiple surgeries.
In 95% of cases, all progression of symptoms stops after one or more surgeries.
About 75% of the time, it only takes one surgery.
About 50% of the time, the symptoms are REVERSED after the first surgery. No headaches, no hearing problems, no balance problems. When the patient wakes up, all symptoms are GONE. Permanently.
About 5% of the time, the patient doesn’t wake up.
From what I understand, the odds are fairly good (at least so far as neurosurgery goes.) Yes, I’m scared. Yes, I will be in a lot of pain. No, it is not optional. But the impending paralysis issue aside, the 50/50 shot of all my medical problems evaporating forever gives me tremendous hope of one day living a mostly “normal” life (physically, anyways.)
I have Kaiser through work, so my medical bills should be fully taken care of. I don’t even have a co-pay. I have a month’s worth of sick days. I don’t qualify for the catastrophic leave/sick day bank because I’m an hourly teacher, but I have 100 days at half pay after my sick days run out. After that, well, who knows, but it’s pretty likely that I’ll be back at work before my medical leave runs out. Caddy has taken wonderful care of me, making sure that I get out of bed for at least a few hours a day, eat, and exercise. He’s done nearly all of the housekeeping, entertains Drew, and drives me around whenever he’s not actually at work.
The handful of people I have told have asked what they can do, and I couldn’t think of anything at the time. However, having had a month to think things over, here’s my list:
1. Lend me DVD’s or Nintendo DSi games. I’ll be in bed for at least a month, and I don’t do boredom well. We don’t have TV or cable, but watching movies on my laptop suits me just fine. Please label them really well; I’ve been having serious problems with short-term memory. I’ll post my surgery date once we know, but don’t worry about it until then.
2. Lend me a really comfy, highly adjustable ergonomic office chair that won’t rub against my incision site. I’m really uncomfortable now, and having a good chair at work and a good chair at home will make a HUGE difference for me. I promise I’ll give them back once I heal up.
3. I need some sort of swing-out-wall-mount or hospital-type rolls-on-the-floor laptop stand so I can swing it in front of me to watch movies in bed. I know these exist, I’ve seen them. If you know where I can buy one, please let me know. I can’t use regular lap desks, or trays that have to touch the bed.
4. Lend me a really comfy recliner. Apparently, I’m supposed to sleep at a 45 degree angle from now until about 6 months after the surgery.
5. While Andrew and Scott are happy to pick Drew up from school while I’m off work, there are times when it’s really hard for them to get there in time. Also, between now and my surgery, I will probably have at least a few days where I will have to leave work before Drew is done with school for the day. If you live in El Monte and it’s not too much of a burden, please offer to be an emergency contact/pick up for Drew.
6. I need a carpool partner for my grad school classes at Cal Poly. I’m in GED 691 and 693, Weds and Thurs. I’m slow and kind of a pain in the rear, but I DO have a disabled placard for parking! I also already have my CPP parking permit. It’s in my purse right now.
7. If you’re handy, please help Caddy soundproof our bedroom so the kids upstairs and the street noise don’t wake me up while I’m trying to recover. We need to replace two windows with double-paned units, install sound deadening insulation, and a thin layer of drywall. We don’t need to paint or anything, I just need to be able to take my pills and sleep through as much of the recovery process as possible. This is a big project, but I think with enough hands it can get done in two weekends.
8. If you’re handy and don’t mind a longer project, please help Caddy finish the bathroom next to our bedroom so I don’t have to walk across the whole darn house to use the toilet. This has been the never-ending project; every time we try to finish it, some other major thing has to get worked on in a tenant’s unit.
9. Once I’m allowed to have visitors, PLEASE visit. I spent a month in bed during my pregnancy, and it was terribly lonely. Bring your laptop and get some work done. Grade papers. Knit. Watch movies with me. Anything. I don’t expect you to be a constant source of entertainment or anything, just a friendly presence.
10. Message and chat with me on Facebook or email. Please don’t text or call after surgery; sleep will be a precious refuge, and I don’t turn off my phone.
11. I would like to have some family portraits with Drew and my fellow co-parents taken before the surgery (you know, when I still have all my hair.) If you have equipment and/or a studio and would be willing to do this without charging us, please let me know.
12. I need a referral for someone who does estate planning/end-of-life decision paperwork. I would like said person to be patient, kind, affordable, and thorough. My will/durable power of attorney/advance directive will probably be rather complex. The chances of me dying are low, but I will feel less scared going into surgery if I feel like all loose ends are tied up.
13. Hope, wish, and or pray for my speedy and thorough recovery, regardless of whatever religion you ascribe to. Any prayers, faithful acts, or spiritual work done on my behalf would be greatly appreciated.
So now you know. So please, no more stepping away from me because you think I have the flu. No walking on eggshells, no carefully phrased questions. If you want to ask me about something, go for it. I won’t be upset. Please be patient with me when I lock myself out of my classroom for the 15th time, and understand when I forget to call you back. Don’t be upset if I have to look for somewhere to sit if we’re going to chat for a while, and don’t be offended if I flake out on our plans because I’m not feeling up to leaving the house. I’m going to try really hard to live as I always have, even though that’s going to be substantially harder for a while. I’m also going to try to go out and “do” things before my surgery. I’m definitely planning on going to Disneyland/DCA before the surgery. Andrew (Drew’s dad) has insisted that I develop a “bucket list,” so if you have any good suggestions let me know.
I’ve been avoiding posting about my medical drama on Facebook, partially because I think it’s an intrusion into other people’s lives. I have a blog I started right after I found out, and have been posting all my Chiari-related stuff there. If you really want to know what’s happening with my health, you can find it here:
http://jennnelson3.blogspot.com/
Please feel free to pass this on to my friends and family who aren’t on Facebook.
Tuesday, December 29, 2009
Finally Out Of Bed.
I woke up at 10am, but didn't manage to crawl out of bed until 2pm. Taliesin came over to do pilates with us. This has been a wonderful development; it really encourages me to keep moving. I have a brutal headache. I'm going to try not to take a Midrin until 9pm, when I attempt to go to sleep. I'm attempting to actually sew some stuff. I need to add more wardrobe options that don't have a constructed waistband, since any pressure on my hips right now is almost unbearable. They must also hide my bulging midsection, since everything I eat makes me puff up like a balloon.
I experienced something really strange this morning. As I was lying down, listening to my heart beat in my head, I heard a weird gurgling noise with every beat. It was distinct, and definitely INSIDE my head. When I sat up, it stopped, and did not come back. Freaky.
I've only been out of bed for four and a half hours, and all I want to do is lay down. I've got scotoma; visual weirdness. Everything looks sort of fuzzy and wavy.
My neurosurgeon appointment is tomorrow. I'm scared, but I'm also glad to be getting this step over with. I'm going to ask for a handicapped placard for my car so I can keep going to my grad school classes for as long as possible. I'll also need to meet with my dean to figure out what concessions with regards to attendance I'm going to be able to get. I'll need a note for work too.
I'm trying to write everything down, because I'm having serious problems with my short term memory. I feel like I'm going CRAZY.
I experienced something really strange this morning. As I was lying down, listening to my heart beat in my head, I heard a weird gurgling noise with every beat. It was distinct, and definitely INSIDE my head. When I sat up, it stopped, and did not come back. Freaky.
I've only been out of bed for four and a half hours, and all I want to do is lay down. I've got scotoma; visual weirdness. Everything looks sort of fuzzy and wavy.
My neurosurgeon appointment is tomorrow. I'm scared, but I'm also glad to be getting this step over with. I'm going to ask for a handicapped placard for my car so I can keep going to my grad school classes for as long as possible. I'll also need to meet with my dean to figure out what concessions with regards to attendance I'm going to be able to get. I'll need a note for work too.
I'm trying to write everything down, because I'm having serious problems with my short term memory. I feel like I'm going CRAZY.
Sunday, December 27, 2009
Attempting Normal
Today I actually got out of bed at a reasonable time, and was up and about for 6 whole hours. Caddy trained me in pilates; part of my "move around more" plan. we used the mini-exercise balls my mom got me, and it did good stuff for my shoulders. We spent our gift certificates, resulting in DS's for EVERYONE in our house now! This was actually a great idea. Everyone can stay occupied during my doctor's appointments and recovery. Caddy is planning on staying in the hospital with me, so a hand-held gaming system will be crucial to his sanity. I also got some new knitting and crochet books, and I intend to fill my new knitting basket from Caddy's dad and stepmom with goodies that will result in comfy hats to cover my bald patch and keep me warm. I don't think that they'll shave my whole head, but I know that I'm going to have some seriously awkward hair for a while. I'd be lying if I said it didn't bother me. Years of caring for my hair and trying to keep it healthy so I can wear it long, and they're gonna shave a bunch of it off just as it's almost to my waist again. Worse yet, the scar is going to cut right through my KF tattoo. I'm so whiny. Here I am, complaining about my future scar/hair, when the surgery is going to keep me from being a paraplegic. Boo freakin' hoo.
I have a really bad headache on my right side tonight. I'm gonna lay down with Drew and we're gonna play with our Nintendo DS's until our eyes bleed (or until I send him to bed.)
I don't want to go back to work right now. I mean, I love my work, don't get me wrong, but the thought of trying to be active and drive and work is just so terrifying right now! I can barely cope with doing light housework between lie-downs. All the same, I'm determined to go out a few more times before I go back to work. This may be my last chance to do so for a while.
I have a really bad headache on my right side tonight. I'm gonna lay down with Drew and we're gonna play with our Nintendo DS's until our eyes bleed (or until I send him to bed.)
I don't want to go back to work right now. I mean, I love my work, don't get me wrong, but the thought of trying to be active and drive and work is just so terrifying right now! I can barely cope with doing light housework between lie-downs. All the same, I'm determined to go out a few more times before I go back to work. This may be my last chance to do so for a while.
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