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.
Thursday, December 31, 2009
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.
Saturday, December 26, 2009
Holiday Hangover
I'm totally wiped today. I woke up at 2pm with a gnarly headache that a Motrin 800 couldn't kill. I don't want to take a Midrin until later, when I make the futile attempt to sleep again.
I've had nightmares for the last 3 days.
My joints hurt, my head hurts, and my right hand is really numb today. I think it might have been all the car travel-we've spent four hours in the car on both Xmas and Xmas eve traveling to various gatherings, so it's very likely.
That being said, I had two lovely days of family and friends. Caddy's family is wonderful, and so kind to Drew. We had lots of wonderful food, and I actually saw both my parents, and everyone from both sides of Caddy's family. My sister-in-law-to-be, Monica, made me STELLAR pecan bars. Caddy has hidden them until our next cheat day, when I intend to eat them until I am too ill to continue. The DSi and games that Caddy got me are addictive as hell; I might not mind bed rest too much, if we can find a way for me to play them comfortably. My dad went all out for us this year; he got us all really sweet gifts. It's funny; it seems like we take turns actually being able to spend money on each other. My mom found me these neat mini-pilates ball things that are supposed to help with pain relief. Remarkably enough, Caddy's been trained in them, so we're gonna give it a shot. Working out a little every day has actually really helped with my mobility. Scott and Drew got me an AMAZING pair of Doc Martens; they're 14 holes with an escape zipper (really important to me at this point in my life) with glow-in-the-dark bones painted on them. I'm breaking them in a little bit at a time at home. He also made me a shirt that says "My brain is too big for my skull: Ask me about my Arnold-Chiari Malformation." I think I'll wear it when I announce that I'm going on leave at work. Maybe it will be my new profile pic when I out my condition on facebook. We'll see.
I'm very lucky that Andrew sr. and Scott such wonderful people. It seems like everyone I know has had horrible divorces except for me. I'm glad that Drew is able to grow up with cooperative, caring co-parents. It makes things so much easier, especially in light of my current health condition. I know that if something went wrong in my surgery, Drew would have no shortage of wonderful, capable parents to raise him.
I'm starting to tell people one at a time in person. If it's someone I've known for a long time, Caddy gives me 3 minutes of small talk before he "reminds" me to tell them. God bless him for that, or I'd never tell anyone out of self-consciousness.
I've had nightmares for the last 3 days.
My joints hurt, my head hurts, and my right hand is really numb today. I think it might have been all the car travel-we've spent four hours in the car on both Xmas and Xmas eve traveling to various gatherings, so it's very likely.
That being said, I had two lovely days of family and friends. Caddy's family is wonderful, and so kind to Drew. We had lots of wonderful food, and I actually saw both my parents, and everyone from both sides of Caddy's family. My sister-in-law-to-be, Monica, made me STELLAR pecan bars. Caddy has hidden them until our next cheat day, when I intend to eat them until I am too ill to continue. The DSi and games that Caddy got me are addictive as hell; I might not mind bed rest too much, if we can find a way for me to play them comfortably. My dad went all out for us this year; he got us all really sweet gifts. It's funny; it seems like we take turns actually being able to spend money on each other. My mom found me these neat mini-pilates ball things that are supposed to help with pain relief. Remarkably enough, Caddy's been trained in them, so we're gonna give it a shot. Working out a little every day has actually really helped with my mobility. Scott and Drew got me an AMAZING pair of Doc Martens; they're 14 holes with an escape zipper (really important to me at this point in my life) with glow-in-the-dark bones painted on them. I'm breaking them in a little bit at a time at home. He also made me a shirt that says "My brain is too big for my skull: Ask me about my Arnold-Chiari Malformation." I think I'll wear it when I announce that I'm going on leave at work. Maybe it will be my new profile pic when I out my condition on facebook. We'll see.
I'm very lucky that Andrew sr. and Scott such wonderful people. It seems like everyone I know has had horrible divorces except for me. I'm glad that Drew is able to grow up with cooperative, caring co-parents. It makes things so much easier, especially in light of my current health condition. I know that if something went wrong in my surgery, Drew would have no shortage of wonderful, capable parents to raise him.
I'm starting to tell people one at a time in person. If it's someone I've known for a long time, Caddy gives me 3 minutes of small talk before he "reminds" me to tell them. God bless him for that, or I'd never tell anyone out of self-consciousness.
Present To Myself
This was the most hectic holiday season I've ever had. With six different holiday functions to attend in two days, I'm positively exhausted. Drew wanted to stay at my mom's to watch a movie, so Caddy and I came home alone. Realizing that it was a Friday, we decided to try and go to Bunker. I made it for about an hour and a half (mostly sitting) before I decided I was too tired and hurty to stay out any longer. My head is really bugging. I think I may take a Midrin and pass out.
I'm really bloated. There was something in dinner that made me puff up like a balloon. It's been a constant issue. Granted, I'm heavy right now as it is- 2 months in bed will do that to a person. But the bloating! I look like I'm 6 months pregnant. My belly is hard, round, and high above my hips. We tried cutting out gluten, but it did nothing.
Caddy is encouraging me to tell people what's going on with this whole Chiari business. It still seems so weird to tell people. It's like I feel bad for imposing on them.
I'm really bloated. There was something in dinner that made me puff up like a balloon. It's been a constant issue. Granted, I'm heavy right now as it is- 2 months in bed will do that to a person. But the bloating! I look like I'm 6 months pregnant. My belly is hard, round, and high above my hips. We tried cutting out gluten, but it did nothing.
Caddy is encouraging me to tell people what's going on with this whole Chiari business. It still seems so weird to tell people. It's like I feel bad for imposing on them.
Wednesday, December 23, 2009
holiday shopping
We did the bulk of our holiday shopping and wrapping over the last two days. With me being so sick, we couldn't get a head start. We decided it would be best to do it during the daytime, during the week while I was on break so we could avoid weekend mall traffic.
I'm exhausted, and I hurt. It was really, really hard. I've never liked the holidays much anyway (at least not since I was a little kid,) but this was ridiculously stressful. Also, I'm really having to deal with last year's goodbye visit with my aunt. I'm still struggling with that. I know my mom is going to have a tough time with it too.
I feel like I've lost 20 IQ points in the last 2 months. I can't seem to get my head screwed on straight, and I'm not as articulate as I was before. I forget things all the time, and I get confused so easily.
Matt got me a Nintendo DSi and a ton of games. That should keep me good and busy while I recover. He's so thoughtful. Kaiser called me today, and made my appointment to see the neurosurgeon in one week. I'm stunned at how fast this is all moving. When I had that cyst burst a few years ago and they thought it was breast cancer, it took six WEEKS to get an appointment! I can't figure out if it's that Kaiser is really efficient, if no one wants appointments until after the holidays, or if they're in a hurry to do the surgery. We'll see, I guess.
I've put on a lot of weight since I first got really sick in October. I've started working out with Matt, and walking as much as I can handle. I'm trying not to overdo it, but I want to stay mobile. All the websites say to stay lean; that it helps with staying physically comfortable. I also have this terrible feeling that if I don't keep moving, I'm going to permanently ossify into a solid mass. Taliesin has been working out with us. It really encourages me, and keeps me from wussing out. I found a good, fat-hiding dress thingy today that I can wear with leggings. Anything with a structured waistband puts too much pressure on my hips, and makes them hurt so badly that it's difficult to walk.
Also in the plus column, the never-healing wound on my nose that I've had for 2 months seems to finally be healing up. I have a GIANT scar- an 1/8th inch diameter HOLE in my nose. All from a stupid zit at the wrong time.
I think when my scar on the back of my head and neck heals up I want to get a big zipper pull tattooed at the base. My aunt Susan had a star done over her chemo/radiation shunt scar, and I really liked the idea of that. I won a haircut at the Side Show Sirens silent auction, so I think I'll use that to get my hair "fixed" after they shave me for surgery. I've seen post-op photos of everything from a shaved stripe that looked like a reverse mohawk to the entire back of the head shaved, so it will be nice to be able to get a cut that will grow out well and work with whatever I end up with. I usually trim my own hair, getting a "shape" once in a while so I have something to work with.
I got an email from the Bravo awards today. The ceremony is on March 3rd. That means that if I get my ideal surgery date, I'll only have 2.5 weeks recovery if I win. Matt says he'll wheel me up on stage in a wheel chair if necessary. I don't think that will be a problem- I'll be outright stunned if I even make it to finals.
I'm exhausted, and I hurt. It was really, really hard. I've never liked the holidays much anyway (at least not since I was a little kid,) but this was ridiculously stressful. Also, I'm really having to deal with last year's goodbye visit with my aunt. I'm still struggling with that. I know my mom is going to have a tough time with it too.
I feel like I've lost 20 IQ points in the last 2 months. I can't seem to get my head screwed on straight, and I'm not as articulate as I was before. I forget things all the time, and I get confused so easily.
Matt got me a Nintendo DSi and a ton of games. That should keep me good and busy while I recover. He's so thoughtful. Kaiser called me today, and made my appointment to see the neurosurgeon in one week. I'm stunned at how fast this is all moving. When I had that cyst burst a few years ago and they thought it was breast cancer, it took six WEEKS to get an appointment! I can't figure out if it's that Kaiser is really efficient, if no one wants appointments until after the holidays, or if they're in a hurry to do the surgery. We'll see, I guess.
I've put on a lot of weight since I first got really sick in October. I've started working out with Matt, and walking as much as I can handle. I'm trying not to overdo it, but I want to stay mobile. All the websites say to stay lean; that it helps with staying physically comfortable. I also have this terrible feeling that if I don't keep moving, I'm going to permanently ossify into a solid mass. Taliesin has been working out with us. It really encourages me, and keeps me from wussing out. I found a good, fat-hiding dress thingy today that I can wear with leggings. Anything with a structured waistband puts too much pressure on my hips, and makes them hurt so badly that it's difficult to walk.
Also in the plus column, the never-healing wound on my nose that I've had for 2 months seems to finally be healing up. I have a GIANT scar- an 1/8th inch diameter HOLE in my nose. All from a stupid zit at the wrong time.
I think when my scar on the back of my head and neck heals up I want to get a big zipper pull tattooed at the base. My aunt Susan had a star done over her chemo/radiation shunt scar, and I really liked the idea of that. I won a haircut at the Side Show Sirens silent auction, so I think I'll use that to get my hair "fixed" after they shave me for surgery. I've seen post-op photos of everything from a shaved stripe that looked like a reverse mohawk to the entire back of the head shaved, so it will be nice to be able to get a cut that will grow out well and work with whatever I end up with. I usually trim my own hair, getting a "shape" once in a while so I have something to work with.
I got an email from the Bravo awards today. The ceremony is on March 3rd. That means that if I get my ideal surgery date, I'll only have 2.5 weeks recovery if I win. Matt says he'll wheel me up on stage in a wheel chair if necessary. I don't think that will be a problem- I'll be outright stunned if I even make it to finals.
Tuesday, December 22, 2009
PD Day 6
I'm starting to be practical. I'm writing down my list of things I want to ask the neurosurgeon, thinking about what I'll want for recovery, jotting down things I can suggest when people ask "is there anything I can do?" That, in particular, was a wonderful discovery I made reading someone else's blog. The few people I've told so far have all asked- and I've had nothing to say.
I want to call my aunt Susan. She was an RN, and lived an absolutely remarkable life despite an eleven year battle with breast cancer and being unable to work. I want her to tell me about surgery and medication. I want her to help me figure out how to live with this, and how to live after this. She was so brave and together through everything. She modeled to me what was truly important. I miss her so much.
I'm scared. I'm scared of the surgery itself. I'm scared of the pain, of possible complications, of it not working. I'm scared I'll lose my job, or be unable to work. I'm scared I'll lose my insurance, have complications, be unable to pay for my care, lose my house, and die of meningitis. That must sound totally absurd, but this is the overriding theme in the back of my mind.
Merry Fucking Christmas.
I want to call my aunt Susan. She was an RN, and lived an absolutely remarkable life despite an eleven year battle with breast cancer and being unable to work. I want her to tell me about surgery and medication. I want her to help me figure out how to live with this, and how to live after this. She was so brave and together through everything. She modeled to me what was truly important. I miss her so much.
I'm scared. I'm scared of the surgery itself. I'm scared of the pain, of possible complications, of it not working. I'm scared I'll lose my job, or be unable to work. I'm scared I'll lose my insurance, have complications, be unable to pay for my care, lose my house, and die of meningitis. That must sound totally absurd, but this is the overriding theme in the back of my mind.
Merry Fucking Christmas.
Monday, December 21, 2009
PD Day 5
My lucky bamboo nearly died. I bought it to remind myself to sit down and be thankful at least once a day. Sadly, I haven't done much of that lately. I should start again.
I'm thankful for so much right now. My loving partner who has taken wonderful care of me. A healthy child who is loving and patient with me and doesn't act out TOO much despite being scared out of his wits by this. An extended family of co-parents who gladly take on more so I can heal, and who throughout all of this I can trust to raise my son well should fate render me unable to do so.
That's not very likely though. From what I've read mortality rate from the surgery is really low- only about 2% from the studies I've read so far. Hopefully the neurosurgeon will have more information about my particulars.
Back to the gratitude.
My friends have been wonderful, with visits, calls, support, and kindness. My mother, father, and stepmother have been flexible with holiday planning (too stressful for me right now,) and have made it very clear that they will be there for me through this. My teammates at work who I've told have been outstanding-picking up the slack where I can no longer pull my weight. My other colleagues don't know yet; but I know they're wonderful people, full of love and kindness. I may even finally have a renter for my guesthouse, but I won't count that chicken until it moves in.
I have great health insurance. So far. For 15 years, no one has wanted to run any real tests, and I've been told over and over that there was no physical reason for my pain and discomfort. Yet 2 months into treatment for good old fashioned influenza, and they've found the needle in the haystack. I'm nothing short of stunned. And to think I was actually scared of switching to Kaiser. Of course, I know that they may deny me things that bring only a small quality of life benefit, but thanks to that policy, I can afford this surgery that otherwise might cost me my home.
I've decided to try and move around more. I did a bunch of walking today; I parked at one end of the Big Kaiser on Sunset and walked to my various stops along the campus. I walked up to the bank, and I walked down to Tiffany's house to pick up Caddy's present. I even did a little pilates with Caddy and Taliesin this morning. I feel better this evening than I did this morning.
I'm working on my short explanation of this whole business. I need a brief, reassuring, and honest description, seeing how I'll be doing a lot of that in the near future.
I'm thankful for so much right now. My loving partner who has taken wonderful care of me. A healthy child who is loving and patient with me and doesn't act out TOO much despite being scared out of his wits by this. An extended family of co-parents who gladly take on more so I can heal, and who throughout all of this I can trust to raise my son well should fate render me unable to do so.
That's not very likely though. From what I've read mortality rate from the surgery is really low- only about 2% from the studies I've read so far. Hopefully the neurosurgeon will have more information about my particulars.
Back to the gratitude.
My friends have been wonderful, with visits, calls, support, and kindness. My mother, father, and stepmother have been flexible with holiday planning (too stressful for me right now,) and have made it very clear that they will be there for me through this. My teammates at work who I've told have been outstanding-picking up the slack where I can no longer pull my weight. My other colleagues don't know yet; but I know they're wonderful people, full of love and kindness. I may even finally have a renter for my guesthouse, but I won't count that chicken until it moves in.
I have great health insurance. So far. For 15 years, no one has wanted to run any real tests, and I've been told over and over that there was no physical reason for my pain and discomfort. Yet 2 months into treatment for good old fashioned influenza, and they've found the needle in the haystack. I'm nothing short of stunned. And to think I was actually scared of switching to Kaiser. Of course, I know that they may deny me things that bring only a small quality of life benefit, but thanks to that policy, I can afford this surgery that otherwise might cost me my home.
I've decided to try and move around more. I did a bunch of walking today; I parked at one end of the Big Kaiser on Sunset and walked to my various stops along the campus. I walked up to the bank, and I walked down to Tiffany's house to pick up Caddy's present. I even did a little pilates with Caddy and Taliesin this morning. I feel better this evening than I did this morning.
I'm working on my short explanation of this whole business. I need a brief, reassuring, and honest description, seeing how I'll be doing a lot of that in the near future.
Sunday, December 20, 2009
PD Day 4, Evening Edition
Fuck Fuck Fuck Fuck Fuck
What if I wake up after surgery and my symptoms are the same? What if I wake up and they're worse? What if I wake up and have all new problems? What if I wake up and I'm not as smart?
What if I don't wake up?
I can barely stand up and the pain, while only a 4 on the pain scale while sitting down, is persistent. I knit for a little while today while laying down in my son's room while he played video games. I get frustrated and overwhelmed really easily right now; everything is just so HARD. I feel like I did nothing today.
Again.
What if I wake up after surgery and my symptoms are the same? What if I wake up and they're worse? What if I wake up and have all new problems? What if I wake up and I'm not as smart?
What if I don't wake up?
I can barely stand up and the pain, while only a 4 on the pain scale while sitting down, is persistent. I knit for a little while today while laying down in my son's room while he played video games. I get frustrated and overwhelmed really easily right now; everything is just so HARD. I feel like I did nothing today.
Again.
PD day 4
This has been a rough morning. My face hurts, my teeth hurt, my skull hurts. My fingers and toes feel numb and cold, but my torso is sweating. My right hand is tingly, and it took about 2 minutes to send a text message. I keep hitting the wrong keys when I type. I took a giant motrin, but am going to hold off on the midrin if I can. It does a stellar job knocking out the pain, but at the price of me spending the rest of the day in haze due to the mild sedative in the medication. I'm really sensitive to sedatives.
This is an average "tough" day. It's not an outright "bad" day- there's been minimal nausea and no shakes. I can't believe I told myself that this was nothing and probably normal for 15 years.
Knowing that I'm not, in fact, crazy or some sort of hypersensitive sissy has been oddly gratifying. For half my life, doctors have implied the above with impunity. Now that they can look at a single printout of an MRI, they look at me in wonder and say "how did you live with those symptoms all this time?" They're stunned I hold a full-time job. They're speechless when they find out I'm also in grad school. All I want to do is scream at them collectively "you told me I was fine! Of course I went out and got a job!"
Well, they didn't ALL tell me I was fine. When I was being tested for Narcolepsy at 19 (all came up negative, of course) the first neurologist I saw told me I probably would never live a normal life. I basically told him to go to hell. Doubtless, my life as I've lived it could never be considered normal. I like to think that I've far exceeded the expectations of normal. But I did so through intense pain and suffering that I don't like to admit to experiencing- after all, I didn't want anyone to think I was crazy, or a hypersensitive sissy.
This is an average "tough" day. It's not an outright "bad" day- there's been minimal nausea and no shakes. I can't believe I told myself that this was nothing and probably normal for 15 years.
Knowing that I'm not, in fact, crazy or some sort of hypersensitive sissy has been oddly gratifying. For half my life, doctors have implied the above with impunity. Now that they can look at a single printout of an MRI, they look at me in wonder and say "how did you live with those symptoms all this time?" They're stunned I hold a full-time job. They're speechless when they find out I'm also in grad school. All I want to do is scream at them collectively "you told me I was fine! Of course I went out and got a job!"
Well, they didn't ALL tell me I was fine. When I was being tested for Narcolepsy at 19 (all came up negative, of course) the first neurologist I saw told me I probably would never live a normal life. I basically told him to go to hell. Doubtless, my life as I've lived it could never be considered normal. I like to think that I've far exceeded the expectations of normal. But I did so through intense pain and suffering that I don't like to admit to experiencing- after all, I didn't want anyone to think I was crazy, or a hypersensitive sissy.
Saturday, December 19, 2009
Post diagnosis-day 3
Trying to sleep sucks. I felt like garbage all day, and I'm sore and exhausted. Worse yet, my lack of productivity makes me feel oddly guilty. I've lived a forced "normal" life for so long, that I feel like a total loser on days where I can't push through. The kids upstairs are playing rock band. I've tried rock band, but I could never make all my fingers move right, and it all moves too fast. Same thing with dance dance revolution. Each thump moving through the floorboards robs me of sleep and reminds me of all the things that have never worked right.
There's been a lot of that in the last three days. The sudden realization that this has all been real- that I'm not some lame hypochondriac-has been both terrifying and freeing. My stepmother reminded me today of my dad telling me to "cut the shit" when I was sick. I guess at some point I decided to not be sick anymore. Of course, I was sick, but damnit, I got up and pretended I wasn't. I ignored signs and symptoms until they were unbearable. I subjected myself to endless medical tests that found nothing. I got so tired of hearing about how it was all in my head that I stopped looking for the real answer.
Ironically, it's all in my head.
Literally.
The joint pain. The nausea. The cold, numb extremities. The growing weakness in my right hand. The clumsiness, the dizziness, the vertigo. Hell, I have vertigo in my dreams. The endless fatigue, the bouts of incoherence, the fainting. The headaches. The hearing problems, the earaches, the ringing in my ears.
It's all in my head.
But not for long. The neurosurgeon will be calling any day now, to set the date when she'll open up my skull and make it all go away, leaving only a zipper-shaped scar zig-zagging up the back of my head.
There's been a lot of that in the last three days. The sudden realization that this has all been real- that I'm not some lame hypochondriac-has been both terrifying and freeing. My stepmother reminded me today of my dad telling me to "cut the shit" when I was sick. I guess at some point I decided to not be sick anymore. Of course, I was sick, but damnit, I got up and pretended I wasn't. I ignored signs and symptoms until they were unbearable. I subjected myself to endless medical tests that found nothing. I got so tired of hearing about how it was all in my head that I stopped looking for the real answer.
Ironically, it's all in my head.
Literally.
The joint pain. The nausea. The cold, numb extremities. The growing weakness in my right hand. The clumsiness, the dizziness, the vertigo. Hell, I have vertigo in my dreams. The endless fatigue, the bouts of incoherence, the fainting. The headaches. The hearing problems, the earaches, the ringing in my ears.
It's all in my head.
But not for long. The neurosurgeon will be calling any day now, to set the date when she'll open up my skull and make it all go away, leaving only a zipper-shaped scar zig-zagging up the back of my head.
Sunday, August 2, 2009
Only one month left.
School starts again in four weeks. The remodel on the guest house is approaching the home stretch, but I haven't done ANYTHING on my house. My grads have been shooting DELIVERED with my mom, and I've spent far too much time on set. I haven't done any of the things I really wanted to do for myself this summer. I have four weeks left, so I guess I better finish up the guest house and get on with things.
Today:
(mostly remodeling guest house.)
Painted inside and outside of back door and door casing.
fixed ceiling in living room.
finished paint touchups in kitchen.
Ran 2 loads of laundry.
Fixed hinges on back door.
Caddy installed the 2 exterior lighting fixtures.
started door molding in bathroom.
Caddy hooked up bathroom vent fan.
Moved air conditioner in bedroom, and installed molding around it.
Installed new lockset on back door.
Tiled about 1/3rd of the shower.
Helped Caddy install vanity light.
Did electrical for vent fan.
ate Pizza.
Wrote part of midterm for EDU 510 (organizational theory in educational leadership)
No wonder I'm tired.
Today:
(mostly remodeling guest house.)
Painted inside and outside of back door and door casing.
fixed ceiling in living room.
finished paint touchups in kitchen.
Ran 2 loads of laundry.
Fixed hinges on back door.
Caddy installed the 2 exterior lighting fixtures.
started door molding in bathroom.
Caddy hooked up bathroom vent fan.
Moved air conditioner in bedroom, and installed molding around it.
Installed new lockset on back door.
Tiled about 1/3rd of the shower.
Helped Caddy install vanity light.
Did electrical for vent fan.
ate Pizza.
Wrote part of midterm for EDU 510 (organizational theory in educational leadership)
No wonder I'm tired.
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