I finally managed to get a doctor to call me back and I landed at the hospital again today for an EEG. I'm not sure what I expected, but it wasn't to be covered in waxy goo that smells like a stale nursing home. Apparently, once you're all hooked up, people enjoy taking pictures and sending them to relatives. The woman conducting my test kept asking if I wanted a picture. I've been trying to figure out since then what exactly people are thinking when they take a picture of themselves hooked to 30+ electrodes with waxy goo and red oil pencil marks all over their head. I felt like an alien, so I suppose that could be a draw, but I felt absolutely no need to even look at myself in the mirror. Instead, I fell asleep.
The technical term for the test is sleep deprived EEG, so naturally you would think that they expect you to fall asleep during the test. But she kept waking me up! What's up with that? The test lady was the talkative sort, so I quickly found out that I share a birth date with her youngest daughter. I also found out that I have one of the thickest heads of hair that she's seen in a while so of course the wax and papers got stuck in my hair where they stayed until about a half hour ago. Actually, despite 30 minutes of scraping my scalp with a fine toothed comb and using all my hot water, I still have wax in my hair. No more paper though.
But the cherry on the top of the banana split was when she told me that I should never go bald - it would just be a scary sight. Why? Because I have the lumpiest head she's ever seen while doing these tests in her 33 years of experience. Lumpy! Despite everything, despite the fact that I was scared shitless hooked up to a machine analyzing my brain by myself, I had to start laughing. I know I have an extremely lumpy head, I'm clumsy, I run into stuff all the time. I knocked myself out with a fire hydrant once. A fat kid another time. It's a long story.
Wednesday, May 27, 2009
Friday, May 22, 2009
No offense to any doctors but.....
Despite this week not including any medical surprises, it's been a rather tough week. As my mom says (not always in the most sympathetic tone) "your bad days are getting worse." And it's true, the wild mood swings that first marked a change in my brain chemistry over two years ago have become increasingly more and more annoying to those around me. There is, however, a reason for the insanity this week (a reason, now there's something rare). I can't get a doctor to call me back if my life depended on it.
I've never understood this phenomenon of being at your doctor's beck and call. Are they not the ones that are charged to help you? They're being paid large sums of money to make sure you are well taken care of. Even hypochondriacs have great doctors. But no, instead, nearly every week I have the same problem - I call one of my six? seven? doctors designed to help me out and I don't get a call back. My specialist is the WORST. I understand I'm not high on their priority list, but let's be honest, I at least deserve a call back. If only to say that they don't have time for me, which I would accept and move on. But no, three phone calls later, still no return call. It's a lot like waiting for a phone call from a guy you're not even sure wants to call you back - hopeful and disappointing, but you always manage to come up with the best excuse for them. So this week marks my search for a new specialist which if possible is even more irritating than waiting for the previous one to call.
I hate new doctors. There is no doctor that will treat me here in Oregon, so I'm currently traveling to Seattle to see one, and the next closest is San Francisco. In my mind, I might as well go to the east coast to see someone who actually knows what they're talking about. It's become a more and more viable solution as time wears on - there's even an awesome research center in NY. I wouldn't mind going to NY. After filling out all the paperwork several times over, when people ask your birthday it automatically comes out "08/31/86." And you're quick about it. (This usually saves you from even more waiting room time). But no, new doctors and their eternally perky assistants have no idea what your information is. Because it's so hard to make a damn copy. I should just print up labels with my name, address and birth date on them and stick it on the top of questionnaire. Or tattoo it to my forehead.
Speaking of questionnaire, I've filled out several of those in my day as well. It's always relatively comical how they're set up. I had one that asked me if I still had all four limbs. Is that a problem somewhere in this country? Random limbs just lying around with no body attached? I understand a war zone might have that problem, but Washington State? Really?
(Just to connect this next thought, I should say that I suck at word association games. The first thing that pops into my head is never what is supposed to... I blame my horrible SAT and GRE scores on this quirk of mine.) When I was 13, we moved to a new town. It was a huge deal to me then, but really, it was a grand total of 60 miles. It seemed like a different planet to my 13 year old mind, and I was terrified. However, half of this had to do with Kaci Boyd. She tried to scare me into leaving town by screaming like a loon on the front porch of a neighbor's house. I was pretty sure that the rest of the town was just as crazy. Anyway, the first day of school was my 13th birthday (another tangent, big school days tend to fall on my birthday, kindergarten on five, Dayton on 13 and college on 18) and we had a questionnaire in my social studies class to determine our level of intelligence on the subject. One question that was on there was "Name two countries the US fought in WWII?" What was the general consensus of most of my new 8th grade class? "Germany and Virginia." I had no idea that Virginia had seceded the union. Again.
Random fun filled tangents aside, this week has been a little crazy. I've been doing some more research, but one of the problems with memory issues is that once you finish one paragraph, the previous one is a total mystery. If you like to read, this becomes funny because you have an endless library with just a few options. Trying to research a disease that's trying to suck your blood, not so much. Researching makes me feel slightly better, but honestly, it's endlessly frustrating to know that you get paid every day to find information for people, but you can't find something to help yourself. Most of this is because it's just not out there. There are very few studies on Lyme that have definitive answers and results. I have access to multiple medical journals, but the reports come down to the same thing - doctors are biased about the disease and there's evidence to both support and contradict the current method of treatment that consists of multiple antibiotics and supplements (I'm up to 33 pills a day). This is, however, the only method of sorta maybe kinda treating the disease that might work.
It's a little like covering your eyes with your fingers spread wide during a scary movie. Not that effective, but people pretend that it might work.
I've never understood this phenomenon of being at your doctor's beck and call. Are they not the ones that are charged to help you? They're being paid large sums of money to make sure you are well taken care of. Even hypochondriacs have great doctors. But no, instead, nearly every week I have the same problem - I call one of my six? seven? doctors designed to help me out and I don't get a call back. My specialist is the WORST. I understand I'm not high on their priority list, but let's be honest, I at least deserve a call back. If only to say that they don't have time for me, which I would accept and move on. But no, three phone calls later, still no return call. It's a lot like waiting for a phone call from a guy you're not even sure wants to call you back - hopeful and disappointing, but you always manage to come up with the best excuse for them. So this week marks my search for a new specialist which if possible is even more irritating than waiting for the previous one to call.
I hate new doctors. There is no doctor that will treat me here in Oregon, so I'm currently traveling to Seattle to see one, and the next closest is San Francisco. In my mind, I might as well go to the east coast to see someone who actually knows what they're talking about. It's become a more and more viable solution as time wears on - there's even an awesome research center in NY. I wouldn't mind going to NY. After filling out all the paperwork several times over, when people ask your birthday it automatically comes out "08/31/86." And you're quick about it. (This usually saves you from even more waiting room time). But no, new doctors and their eternally perky assistants have no idea what your information is. Because it's so hard to make a damn copy. I should just print up labels with my name, address and birth date on them and stick it on the top of questionnaire. Or tattoo it to my forehead.
Speaking of questionnaire, I've filled out several of those in my day as well. It's always relatively comical how they're set up. I had one that asked me if I still had all four limbs. Is that a problem somewhere in this country? Random limbs just lying around with no body attached? I understand a war zone might have that problem, but Washington State? Really?
(Just to connect this next thought, I should say that I suck at word association games. The first thing that pops into my head is never what is supposed to... I blame my horrible SAT and GRE scores on this quirk of mine.) When I was 13, we moved to a new town. It was a huge deal to me then, but really, it was a grand total of 60 miles. It seemed like a different planet to my 13 year old mind, and I was terrified. However, half of this had to do with Kaci Boyd. She tried to scare me into leaving town by screaming like a loon on the front porch of a neighbor's house. I was pretty sure that the rest of the town was just as crazy. Anyway, the first day of school was my 13th birthday (another tangent, big school days tend to fall on my birthday, kindergarten on five, Dayton on 13 and college on 18) and we had a questionnaire in my social studies class to determine our level of intelligence on the subject. One question that was on there was "Name two countries the US fought in WWII?" What was the general consensus of most of my new 8th grade class? "Germany and Virginia." I had no idea that Virginia had seceded the union. Again.
Random fun filled tangents aside, this week has been a little crazy. I've been doing some more research, but one of the problems with memory issues is that once you finish one paragraph, the previous one is a total mystery. If you like to read, this becomes funny because you have an endless library with just a few options. Trying to research a disease that's trying to suck your blood, not so much. Researching makes me feel slightly better, but honestly, it's endlessly frustrating to know that you get paid every day to find information for people, but you can't find something to help yourself. Most of this is because it's just not out there. There are very few studies on Lyme that have definitive answers and results. I have access to multiple medical journals, but the reports come down to the same thing - doctors are biased about the disease and there's evidence to both support and contradict the current method of treatment that consists of multiple antibiotics and supplements (I'm up to 33 pills a day). This is, however, the only method of sorta maybe kinda treating the disease that might work.
It's a little like covering your eyes with your fingers spread wide during a scary movie. Not that effective, but people pretend that it might work.
Tuesday, May 19, 2009
Do we really need help breathing?
So I took a breathing class today. I'm not sure I needed to learn how to breathe. It seems a pretty natural thing, just in and out. In. Out. Not too difficult to comprehend. Except that I nearly pass out every time. Apparently, the concept is just too difficult for me to grasp.
I have done a few yoga classes in my wild and crazy search to discover new things. You walk into class, a little self conscious about your lack of clothing and the VERY LARGE mirror in front of you and then you start with a breathing exercise. Expand your chest, feeelll the breath reach your toes.... About this time, I start seeing spots. Again, it's deep breathing. Something you're born knowing how to do. Maybe I just get self conscious and forget how to do it when you really have to think instead of just... well, doing.
It's like when you're in the doctor's office on the bed/bench/medieval torture thingy-mabob. The doctor comes in, leans really close to check your eyes with the light and then uses the coldest stethoscope they can find. Breath in deeply... tick tock tick tock... and here come the spots. My heart always speeds up too, I'm pretty sure every doctor I've seen thinks I have a heart defect until I argue that I don't. On a random side note, I've always wondered where the bed/bench/medieval torture thingy-mabobs end up. Is there a special graveyard for them? Or do they end up in third world countries painted strange bright colors like buses?
Tangent - back to breathing. It's always very relaxing once I get a grip on my consciousness. And then, out of nowhere, comes the most random thought of the day. I'm totally relaxed, so of course I have to start thinking about the nasty old pasta salad I have to clean out of the fridge. Or someone I haven't talked to in weeks, but just HAVE to call in that moment of complete relaxation. Makes total sense, right?
Maybe the class shouldn't be so much on breathing, but more on controlling vagrant, out of control and irrelevant thoughts. Where's that class when you need it? I could teach Distraction 101: The Art of Being Sidetracked and Taking People Down With You.
I have done a few yoga classes in my wild and crazy search to discover new things. You walk into class, a little self conscious about your lack of clothing and the VERY LARGE mirror in front of you and then you start with a breathing exercise. Expand your chest, feeelll the breath reach your toes.... About this time, I start seeing spots. Again, it's deep breathing. Something you're born knowing how to do. Maybe I just get self conscious and forget how to do it when you really have to think instead of just... well, doing.
It's like when you're in the doctor's office on the bed/bench/medieval torture thingy-mabob. The doctor comes in, leans really close to check your eyes with the light and then uses the coldest stethoscope they can find. Breath in deeply... tick tock tick tock... and here come the spots. My heart always speeds up too, I'm pretty sure every doctor I've seen thinks I have a heart defect until I argue that I don't. On a random side note, I've always wondered where the bed/bench/medieval torture thingy-mabobs end up. Is there a special graveyard for them? Or do they end up in third world countries painted strange bright colors like buses?
Tangent - back to breathing. It's always very relaxing once I get a grip on my consciousness. And then, out of nowhere, comes the most random thought of the day. I'm totally relaxed, so of course I have to start thinking about the nasty old pasta salad I have to clean out of the fridge. Or someone I haven't talked to in weeks, but just HAVE to call in that moment of complete relaxation. Makes total sense, right?
Maybe the class shouldn't be so much on breathing, but more on controlling vagrant, out of control and irrelevant thoughts. Where's that class when you need it? I could teach Distraction 101: The Art of Being Sidetracked and Taking People Down With You.
Monday, May 18, 2009
On Ambien
do you know when you really feel good about life? when your smile makes their day and you get giddy just thinking about them? combine that feeling with free floating craziness and you get my joy at the end of the night with the sleeping pill. Watch out for the crazy green monsters in the closet! They've got slimy claws and big teeth. You may think I'm crazy, and be right, but those monsters scare the shit out of me.
Eric, this one's for you. Just because I"m that kind of crazy and I feel like you need cheering. I know law is your side, but what about white knights to kill the green monsters? Fresh out?
I should apologize here and now to anyone I may insult throughout this blog. I promise to have fun, attempt to be polite, but always honest.
Eric, this one's for you. Just because I"m that kind of crazy and I feel like you need cheering. I know law is your side, but what about white knights to kill the green monsters? Fresh out?
I should apologize here and now to anyone I may insult throughout this blog. I promise to have fun, attempt to be polite, but always honest.
Starting Out
So. This is supposedly cathartic. I guess it could be similar to therapy, but I never really thought about blogging. Sending personal information into space wasn't appealing. It still isn't, but there are multiple things that spurred me to begin this. First of all, my thoughts get jumbled in my head, I hate burdening people with them, but my fingers itch to put my thoughts into words. Second, I can write a mean email when I really get on a rant, but the people who receive them don't really count themselves lucky - just on the receiving end of a crazy person's rant.
I've had a rash of bad luck this last year. And not just the regular bad luck where you step in dog shit, but truly bad luck. I'm such a believer in karma that I'm pretty sure that someone out there has had the best year of their life, or I was an axe murderer in my last life. Anyway, my bad luck actually started years ago. I began to wake up in the middle of the night with knee pains. My parents didn't think I was making it up, they just figured there might be some exaggeration going on. I went through high school with the pain, thinking it was relatively normal and everyone else had it too, I was just this big baby. Going to college, I was sick for about two months without explanation my freshman year. From there, symptoms got progressively worse and more aggressive. Instead of just my knees, my lower back to my ankles became inflamed. Headaches began to get worse and I thought I was going crazy. I jumped in and out of therapy, physical therapy and specialist's offices who all came to the same conclusion - I was just making shit up.
One thing you should know about me is that my sanity lies in my ability to distract myself. I ended college with two majors and close to six minors because I just kept going to class. I'm one of those nerds that really just loves to learn. Anyway, I moved to Portland last June. My symptoms got worse to the point that I couldn't get out of bed and my legs just wouldn't hold my weight, which has never been substantial. I've always understood why some people's mind snaps when pain gets too bad... I've been way to close before. My head would pound to the point that I couldn't stand to be around anyone or do anything. And all you're left to do is sit and ruminate on the pain. I've had broken bones before (a result of being a huge klutz) but I would take a broken bone to the endless pain. I walk everywhere, not because I particularly enjoy not having a license, but a small part of me wonders how much longer I'll be able to do that.
I went in for an MRI last August, which found a small pituitary tumor. After being poked and prodded for three months solid, my doctors came up empty handed on what would actually cause the symptoms I was experiencing. The only progress I made was that they admitted that something was wrong with me - they just didn't know what. I about gave up hope when my mother (god love her) was gossiping about my problems with a coworker and discovered that my symptoms and those of her coworker's daughter's were eeirly alike. Her daughter's recent diagnosis? Lyme Disease. Mom calls and tells me about this and I start to look into it. The list of symptoms sound familiar, but I live on the West Coast of the US, which means that no doctor really knows about Lyme. Despite this, the diagnosis was made. I now get to go to Seattle every month or so just to see a damn doctor.
By Christmas my list was up to late stage Lyme and a tumor that just sits there. Mom and Dad call it Mr. Lumpy. I began the long term (2 year) intense antibiotic treatment in January. Lucky me, it makes me nauseous. So on top of being in pain, having headaches, and extreme fatigue, I now have nausea to contend with. Which, honestly, was another great distraction. Puking has a way of taking your mind off everything else. I figured this would be enough to contend with, but apparently the forces that be thought to throw something else in the mix. Last Wednesday, I 'woke up' on my couch to find I couldn't remember the last hour. I couldn't see straight to save my life and felt like I was a drunken sailor wearing 3-D glasses without the movie. Everything was turning to the left (I wonder if that says something about me). I couldn't hear, and couldn't speak. I don't remember opening my email, but slowly began to realize that I wasn't make any sense. My writing was sort of like a dyslexic third grader who was just learning English. I kept writing that something was wrong with me. I hadn't taken any medication that would have caused it (and I have my fair share of those) so I stumbled to bed and that's the last I remember of Wednesday night. I emerged Thursday feeling completely exhausted, but thinking the whole night before had been a dream. It wasn't until I read that damn email that I realized something had gone very wrong. I spent the majority of my Friday night in the ER (a great place to people watch, FYI) and discovered that I had had a seizure. What scares me is that I was completely alone, and didn't remember it for two days. Could someone have just found me in my apartment?
Life has taken some strange turns lately. I enjoy writing, but hate telling people about this side of me. It's a weakness. I've never blamed anyone for my being ill, not doctors, not parents, not even the damn sixth grade teacher that decided to squish the tick instead of pull it out. It's my weakness, and mine alone. I've never called anyone when I'm having a particularly bad episode and I can't move. I've never told anyone that I lay on the floor and just sob, the pain is so intense. But I've discovered that it eats at you. So, even though I hate asking for help, I'm asking now. I need to be able to share this, to realize that while my body is failing me, it is not something I've done. Logically, I know this. Emotionally... well, it's hard to remember sometimes. I try to keep a positive attitude, and in public, I laugh instead of cry. At home, curled in bed with a bear that's older than me, there's no one to smile for. Just the mirror. And the eyes in the mirror stare back out at me, helpless to mask the pain and fatigue.
I've come face to face with my own mortality lately. I'm not scared of it, just nervous about losing my independence. I hate having to depend on someone else for my own well being, even if it's just my parents. I love them dearly, but the ultimate failure in this fight would be to go home. If treatment doesn't work... well, the bacteria will slowly continue to take over my body. I imagine it as little green monsters attacking my blood cells. The same green monsters that pop out of my closet in the middle of the night after I take a sleeping pill. Maybe this says something - that I see the disease as a living organism that is after me.
Now, I write this not for pity, but to try and cleanse myself of the depression. Talking about it always helps, and I appreciate honest feedback. I hate pity, I don't want it, but I love understanding. Something to know about me is that I love passionately, but enjoy being alone. Not to wallow, just hide. I hate to think of those I love being burdened with my problems. This blog developed out of the helpless feeling after the seizure and an article that headlined MSNBC this morning: http://www.msnbc.msn.com/id/30725967/. I wouldn't wish this on anybody, but a small part of me knows I'm not alone.
So here I go, this is my story. I hope it doesn't freak you out or make you treat me differently. :)
I've had a rash of bad luck this last year. And not just the regular bad luck where you step in dog shit, but truly bad luck. I'm such a believer in karma that I'm pretty sure that someone out there has had the best year of their life, or I was an axe murderer in my last life. Anyway, my bad luck actually started years ago. I began to wake up in the middle of the night with knee pains. My parents didn't think I was making it up, they just figured there might be some exaggeration going on. I went through high school with the pain, thinking it was relatively normal and everyone else had it too, I was just this big baby. Going to college, I was sick for about two months without explanation my freshman year. From there, symptoms got progressively worse and more aggressive. Instead of just my knees, my lower back to my ankles became inflamed. Headaches began to get worse and I thought I was going crazy. I jumped in and out of therapy, physical therapy and specialist's offices who all came to the same conclusion - I was just making shit up.
One thing you should know about me is that my sanity lies in my ability to distract myself. I ended college with two majors and close to six minors because I just kept going to class. I'm one of those nerds that really just loves to learn. Anyway, I moved to Portland last June. My symptoms got worse to the point that I couldn't get out of bed and my legs just wouldn't hold my weight, which has never been substantial. I've always understood why some people's mind snaps when pain gets too bad... I've been way to close before. My head would pound to the point that I couldn't stand to be around anyone or do anything. And all you're left to do is sit and ruminate on the pain. I've had broken bones before (a result of being a huge klutz) but I would take a broken bone to the endless pain. I walk everywhere, not because I particularly enjoy not having a license, but a small part of me wonders how much longer I'll be able to do that.
I went in for an MRI last August, which found a small pituitary tumor. After being poked and prodded for three months solid, my doctors came up empty handed on what would actually cause the symptoms I was experiencing. The only progress I made was that they admitted that something was wrong with me - they just didn't know what. I about gave up hope when my mother (god love her) was gossiping about my problems with a coworker and discovered that my symptoms and those of her coworker's daughter's were eeirly alike. Her daughter's recent diagnosis? Lyme Disease. Mom calls and tells me about this and I start to look into it. The list of symptoms sound familiar, but I live on the West Coast of the US, which means that no doctor really knows about Lyme. Despite this, the diagnosis was made. I now get to go to Seattle every month or so just to see a damn doctor.
By Christmas my list was up to late stage Lyme and a tumor that just sits there. Mom and Dad call it Mr. Lumpy. I began the long term (2 year) intense antibiotic treatment in January. Lucky me, it makes me nauseous. So on top of being in pain, having headaches, and extreme fatigue, I now have nausea to contend with. Which, honestly, was another great distraction. Puking has a way of taking your mind off everything else. I figured this would be enough to contend with, but apparently the forces that be thought to throw something else in the mix. Last Wednesday, I 'woke up' on my couch to find I couldn't remember the last hour. I couldn't see straight to save my life and felt like I was a drunken sailor wearing 3-D glasses without the movie. Everything was turning to the left (I wonder if that says something about me). I couldn't hear, and couldn't speak. I don't remember opening my email, but slowly began to realize that I wasn't make any sense. My writing was sort of like a dyslexic third grader who was just learning English. I kept writing that something was wrong with me. I hadn't taken any medication that would have caused it (and I have my fair share of those) so I stumbled to bed and that's the last I remember of Wednesday night. I emerged Thursday feeling completely exhausted, but thinking the whole night before had been a dream. It wasn't until I read that damn email that I realized something had gone very wrong. I spent the majority of my Friday night in the ER (a great place to people watch, FYI) and discovered that I had had a seizure. What scares me is that I was completely alone, and didn't remember it for two days. Could someone have just found me in my apartment?
Life has taken some strange turns lately. I enjoy writing, but hate telling people about this side of me. It's a weakness. I've never blamed anyone for my being ill, not doctors, not parents, not even the damn sixth grade teacher that decided to squish the tick instead of pull it out. It's my weakness, and mine alone. I've never called anyone when I'm having a particularly bad episode and I can't move. I've never told anyone that I lay on the floor and just sob, the pain is so intense. But I've discovered that it eats at you. So, even though I hate asking for help, I'm asking now. I need to be able to share this, to realize that while my body is failing me, it is not something I've done. Logically, I know this. Emotionally... well, it's hard to remember sometimes. I try to keep a positive attitude, and in public, I laugh instead of cry. At home, curled in bed with a bear that's older than me, there's no one to smile for. Just the mirror. And the eyes in the mirror stare back out at me, helpless to mask the pain and fatigue.
I've come face to face with my own mortality lately. I'm not scared of it, just nervous about losing my independence. I hate having to depend on someone else for my own well being, even if it's just my parents. I love them dearly, but the ultimate failure in this fight would be to go home. If treatment doesn't work... well, the bacteria will slowly continue to take over my body. I imagine it as little green monsters attacking my blood cells. The same green monsters that pop out of my closet in the middle of the night after I take a sleeping pill. Maybe this says something - that I see the disease as a living organism that is after me.
Now, I write this not for pity, but to try and cleanse myself of the depression. Talking about it always helps, and I appreciate honest feedback. I hate pity, I don't want it, but I love understanding. Something to know about me is that I love passionately, but enjoy being alone. Not to wallow, just hide. I hate to think of those I love being burdened with my problems. This blog developed out of the helpless feeling after the seizure and an article that headlined MSNBC this morning: http://www.msnbc.msn.com/id/30725967/. I wouldn't wish this on anybody, but a small part of me knows I'm not alone.
So here I go, this is my story. I hope it doesn't freak you out or make you treat me differently. :)
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