How it all began-College and getting a real job

I lumped my community college years in with high school, because it seemed like an extension of high school. After 3 years I finally got my AA Degree and moved about two hours from my parents home to go to UF. My major was Recreation with an emphasis in Therapeutic Recreation. The joke was that it was one of the easiest degrees, the way people knew this was that a lot of the football players were in my major. I did have to take a few difficult classes like Anatomy, Physiology, and Med Terminology. The classes that were out of my major were always larger and seemed to be the ones that were early, hence I didn't make it to the lecture classes much. But it didn't really matter, you could buy the professors power point presentations at the copy store, so it worked out well for me. I learned mainly be reading the text books. I had a letter from the school disability office I could give my professors to explain that I may, "appear to nod off at times." I guess they were trying to protect my personal info because the letter didn't actually say I had narcolepsy, but I usually told the professors. I remember one girl I met in college, Judy, used to offer to let me copy her notes, this was such a big help and she never made me feel bad about it or like I was lazy or cheating. I used to type all of my notes and would type outlines of chapters I read. This seemed to help me remember things, because I would often have to read and reread the same chapter over and over and often the info gets all mixed up when this happens, it is as if when you are in a drowsy stage you may actually read it but your mind isn't alert enough to store it properly into long term memory.

The Department of Recreation at UF is not huge, at the time there were probably around 10 professors. I probably had about 6 of them over and over, so they knew me well. I did great in all of these classes. I remember I could always stay awake in one specific professors class. My friends joked that I was her teacher's pet and that it was like she was lecturing just to me. I finally realized she was doing this because engaging me, even if it was just with her eye contact, seemed to help me stay awake. My two years at UF were good ones, usually my first class was at 10 or 11am and I lived across the street from campus and my favorite bar was two blocks away, so I hardly had to drive anywhere. The drive back home to visit my parents and friends sucked, two hours was way longer than I should ever drive at a time, but it has only been recently that I have admitted this to anyone (if you are a parent of a young adult with narcolepsy don't believe them when they say they don't fall asleep driving, I am lucky to be alive).
My last semester consisted of a 40 hours per week internship, which a I did in a children's hospital. It was a wonderful experience, but was a bitter taste of what having a "real job" and narcolepsy was going to be like. I did not tell my internship location that I had narcolepsy at first, but eventually it came out after I had to explain a cataplexy attack I had in an elevator one day, during which I came close to spilling a soda all over the doctor standing in front of me. The worst part of them knowing was that I was told I could not pick any children up, well if you have been around any sick children you can see that this would cause some awkward situations. I became very bitter over this, and some other bureaucratic issues that I had yet to experience, until then.
Another bone of contention during this time period relates to my family visiting. I know it will make my sister sad when she reads this, but she probably hurt my feelings more on one visit than throughout our entire childhoods. As I said earlier I started smoking cigarettes at around 18 yrs old. I hid this from my parents for years and years. So when they would come to visit sometimes I would have to go almost all day without having a cigarette (I hadn't discovered the nicotine patch yet). As you can imagine the nicotine helped me be a bit more alert. I found without it I would tend to not only be sleepier but I would have more frequent cataplexy attacks. My parents had seen these while I was living at home, but not that often. They always joked when my friends would tell stories about me doing the "falling thing" that I must not think anything at home was very funny because I didn't do it much at home. But with no nicotine for hours at a time, I tended to do the falling thing a lot when they would come to visit. Once we were in the pool of the hotel they were staying at and I did the falling thing and probably would have drowned if my dad wouldn't have held my head above water. Anyway, my sister would insinuate that I was faking it for attention because I seemed to do it more when my parents were around. Well that was because I couldn't smoke around them, but I couldn't come out and say this in front of them. I got the impression she didn't believe I had narcolepsy. Unfortunately this was not the last time I would feel someone doubted the validity of my having narcolepsy.
I slept through most of my graduation ceremony, my friends had to wake me up when it was time to walk. Having no money and no job, I moved back in with my parents and started the search for my first "real job". I got a job not directly related to my degree, but who does, working in a reading clinic. I loved that job and stayed there for about 4.5 years until they moved locations and I couldn't manage the drive any longer. It was a small company and for a long time I didn't tell everyone about my narcolepsy. It quickly became the office joke, but it wasn't too bad because we were all really close, and at least then I had an excuse for often being late. But I was a workaholic and would stay late and take work home, so no one seemed to mind too much if I came in late. Although I started there working directly with kids all day I eventually moved to a job more in the office versus in the clinic. The teaching was one-on-one so it was generally hard to doze except at the end of each session when the kids would read aloud for about 10 minutes, sometimes this was a struggle. I am a master at reading upside down though. I got married during this period, which I will get into in another post.
My next job was primarily an office job and very close to my house. It was basically a 9-5 job, and thinking back I don't know how I made it on time, but I seemed to. I stayed there for about 6 months and then my husband and I decided to move back to my college town. I got a job as a social worker working with individuals with developmental disabilities. This job allowed me to basically make my own schedule but my cases were spread out and sometimes I had to drive an hour to make a contact with a client. This sucked, but I managed. Eventually I became a supervisor and am now director of our office which has about 15 employees. We are a pretty laid back office and I don't have to be there early, but again I am a workaholic so I am often there very late, and usually go in on the weekends, so I don't feel bad for coming in at 10 or 11am. My job is way too much work for way too little pay, but when I think about getting another job I don't know how I could ever get one that allowed me so much flexibility in my schedule. I don't think I could be anywhere at 7 or 8 am for more than a day or two in a row. So I am kind of stuck where I am. I have only told a few people in my office that I have narcolepsy, and I have asked them not to repeat it, although sometimes I think the word has gotten around. Sometimes I want to because I feel that people may be bitter about me not coming in early, but I have found it just becomes the office joke, so at least if everyone does know but they don't know I know they know I don't have to hear the jokes, they can make them on the sly.
I have a trick for staying awake in meetings and trainings, I put a rubber bank around my wrist and snap myself when I start to dose. Be careful though, before too long you will have a welt. Bringing my laptop helps if it is a large group and no one minds. Even though I do things unrelated to the training, like check my email, at least I am awake to hear the lecture. I think a laptop would have been very helpful in college.
Well I have bored you enough for now, I'll try to make my next post more interesting!
A Sleepy Girl

How it all began-High School and Being Diagnosed

I got through my teens uneventfully health wise. During my late teens and early 20's I partied a lot, lots of late nights which is what I attributed my sleepiness to for a long time. I should be grateful I am alive, because I remember many times I should not have been driving, I definitely did the "auto pilot" thing. When you realize you are home, but don't remember getting there. VERY DANGEROUS!

During high school I slept through a lot of classes. I remember I could usually make it until my third class before dozing. For a while I tried taking what we called "white cross", which was an asthma medication you could get at headshops or drug stores. They would make me hyper for a couple of hours and then I would crash. I would get home from school and watch Opera and then usually sleep until dinner and then watch some tv and go to bed. Usually I did my homework during the class before it was due, but this seemed to be what everyone did, I actually was not a bad student, but not spectacular. My teachers always liked me and I only remember one teacher making a big deal about me sleeping, because we were teenagers, we all slept through high school.

Anyway, after I graduated high school I stayed at home and went to a local community college. That is when I really started sleeping through classes. In retrospect I remember doing the "falling thing", cataplexy, a few times during high school, but it always seemed to be when something was really funny, and mostly involved some alcohol so it wasn't so obvious. I was into alternative music and dark clothes. Anyway I had a hippy primary care doctor who wore Birkenstock's with socks. Every time I saw her she would ask me twenty questions all leading to, “was I depressed?” This was because I would complain about being tired. After being diagnosed I realized I was depressed because I was tired all the time, I wasn’t tired all the time because I was depressed. My parents tried to blame me being tired on me becoming a vegetarian at age 15, but my hippy doctor didn't think this was the reason. Finally one day I was there for a typical flu or something and she asked if there was anything else wrong. For some reason I mentioned the falling thing, I think honestly I hadn't mentioned it before then because I had done some experimenting with mind altering substances and was afraid it was an after effect. Anyway, I remember her face when the words came out of my mouth, she was completely still. Then she said anything else, anything at all? And I thought about it and told her about the crazy evil cat that I thought was living in my bedroom and how I would feel it breathing on my neck and walking on my bed and I would wake up but couldn't move to turn the light on. Without saying a word she got up and walked out of the room. She came back with a huge smile on her face and a big medical book. She had it opened to the section on Narcolepsy. I left the office with a referral to a Pulmonologist and with a sense of glee. I remember running home before going to work just so I could happily tell my mom, "I can take a pill and feel better every day." My mother was not as gleeful when I told her my doctor thought I had narcolepsy. She was confused and worried.

She sent me to a pulmonologist because some of them treat people with narcolepsy and other sleep disorders like sleep apnea. I had the sleep study done. My parents were so cute, they bought me a handheld sony game unit to give me something to do. They definitely decided I didn't have sleep apnea so I had to stay for the entire day to do the nap thing. It was done at a small hospital and they were all really friendly and they let me go look at all the computers that showed each of my leg movements, eye twitches, and REM periods. It was pretty interesting. The nurses had to keep coming in to wake me up in between the naps because they could watch me on the camera and see me nodding off while watching tv or playing games. I fell asleep within 5 minutes each time and went into REM the first nap or so, which doesn't normally happen when you take a 20 minute nap. So the sleep study concluded that I had narcolepsy. After a while of being treated by the pulmonologist I switched to a Neurologist, basically because I was mad that he mentioned in front of my mom once that I was on birth control pills, which she did not know prior to that. My mom kept to her theory of parenting; on the ride home she didn't even mention it, which is her way, the denial method of parenting. But that was fine with me. Oh and I started smoking cigarettes at about 18, my parents didn't find out about that for years, they both smoke so they didn't notice. I hated smoking for ever and would bug my friends and parents about quitting for a long time; I blame me starting to smoke on trying to stay awake driving, which I think did play a part in it.

When I switched to a Neurologist he had me get an MRI to rule out a tumor, and he gave me some kind of blood test which I tested positive for, not sure exactly what it was, but it is something that everyone with narcolepsy tests positive for but not everyone that tests positive has narcolepsy? I have been seeing a neurologist since.

Here is another good stopping point, and it is getting late so I am off to bed.

A Sleepy Girl

How it all began-birth through adolescents

This may be boring, but I am going to give a brief narrative of my birth, childhood, etc. Mainly to point out that it was pretty typical.
But before I get to that, this is funny, and typical of my evenings of late. I got home from work at about 6:30pm, very excited to start reading the sixth Harry Potter book. First I had to scoop the cat litter, cover some outdoor plants, and make myself a bowl of soup. I got to page 16 and fell asleep on the couch. I slept "normally" for I don't know how long and then towards 8pm I started trying to wake up. I am never really sure how long these episodes last. But I just could not wake myself up. For what seems like a long time I even had my eyes open and was staring at the coffee table, on the coffee table is a strange stuffed dog that my cats use as a bed. I was hallucinating that it was moving, just slightly as if one of my cats was under it wiggling around. When I finally woke up all three cats were asleep around me on the couch. I used to be afraid to open my nightstand drawer because it was at my eye level so when I would have one of these episodes, sleep paralysis, it is what I would stare at, and I would hallucinate roach antennae coming out of the top of the drawer. No matter how many times I have a sleep paralysis attack, sometimes I still have to reason with myself when I wake up to convince myself it was just a hallucination. Mostly it is frustrating because I often just sit and think about how much stuff I have to do, but can't wake myself up to do it all.

A doctor once explained many of the symptoms of narcolepsy as a problem with my mind/body going into REM at the wrong times. He said that during REM our bodies are paralyzed so we don't act out our dreams and injure ourselves. He said the sleep paralysis thing is my mind snapping out of REM before my body. This was helpful because at the time I swore I was having seizures in my sleep because I would "wake up" and be staring at the spot where the ceiling meets the wall and the line would be vibrating, so I thought I was having a seizure and that my body was actually moving. His explanation made me realize that my eyes were just stuck in "rapid eye movement" mode and that I was not having a seizure.

Back to how it all began. I was born in New York. I remember hearing that during delivery my umbilical cord got wrapped around my neck and at one point they blind folded my poor mom, I can' t imagine them doing that today, it would have freaked me out even more. Anyway, my mom says it was a very long delivery, but no major problems. I was very small, 5 pounds 6 ounces and was in an incubator for a bit. My mother smoked cigarettes while pregnant. I guess I was a pretty healthy baby in general. The only other infant event was that my grandmother fell down a flight of stairs while holding me. My mother was at the bottom of the stairs and couldn't do anything but sit on the bottom step to break her fall. She said it was awful because I didn't make a sound. When unwrapped the blankets I was fine, not even a scrape.
When I was 8 years old we moved to Florida, and I have lived here ever since. In general I was pretty healthy, and if you ask my family I was hyper and never stopped talking from the day I started! I was a very skinny child. I remember my doctors encouraging my mom to give me shakes to gain weight. It was like I had a parasite or something, because I ate and ate, but was very skinny. I also seem to remember having strep throat a lot. My mom tried to get my tonsils taken out, but they wouldn't do it without 10 reported cases in a year. Anyway I remember taking antibiotics a lot as a kid. So much that now I have to take the really strong ones that come in the bubble packs. I seem to have built up a resistance.
The only other odd thing was I remember sometime between the age of maybe 10 and 14 years old I had to get one of my immune shots again because they apparently realized I had gotten it too early the first time, before age two. I have done some reading on antibiotics and immunization shots and it seems there is a correlation between various health issues and the timing of immunizations and antibiotics. It seems they are definitely telling doctors not to give immunizations if the child is on antibiotics or within a certain time period. I remember being on antibiotics so much that it is likely that I could have been on them or had been on recently when I got that immune shot again.

Well here is a good breaking point. I will continue with high school and on later. I have been thinking about future posts and gathering info from other sites and have some ideas for future posts to include: Various medicaitons, sex and narcolepsy, funny cataplexy stories, links to videos on narcolepsy, marriage and narcolepsy, divorce and narcolepsy, work settings and narcolepsy, socializing and narcolepsy, life adjustments that may/may not help, links to other sites, conference info, etc. So keep coming back!
A Sleepy Girl

Welcome to my sleepy world

Hello, thanks for stopping by. I am starting this blog basically to vent a lot of my frustrations with Narcolepsy. But I hope that it may be helpful, informative, and entertaining as well. Let's face it on the surface Narcolepsy is funny. Even just the word itself is funny:

Nar-co-lep-sy.

The symptoms, particularly cataplexy, have provided my friends with hours of amusement. Once I even won $5 on a bet that I could not really fall asleep in under five minutes. Narcolepsy also gave me an excuse to sleep through half of my college classes, especially the ones at 7am (I managed to graduate with honors, but it was in something that was known as one of the easiest degrees around). My friends used to say I learned through osmosis, sleeping on all my books. Often I would wake up to find they had written funny things on my notepads while I slept through a lecture. My notes always trailed off the page as I got sleepier and sleepier. At the time, and I'm sure even more so now, I was able to buy the professors lecture notes at the copy place down the street. I'm really not sure why they made us go at all.

But this is just the intro post, I'll get into more detail on all of these topics as I go.
Enjoy, and please post comments!