Thursday, November 10, 2011

PFLAG: Or, Why Do People Have Meetings At Night of All Ridiculous Times??

Since we moved back into the area, we've been in search of support groups that have trans members. Transsexualism isn't really something you can talk about to just anyone you meet, and even when you can people usually can't relate. First we tried driving an hour to the nearest city, but it was just too inconvenient. Then we realized there's actually a chapter of PFLAG (an LGBT and allies group) just twenty minutes away.

The first meeting we went to (they're monthly) wasn't terribly exciting, but that might have just been because I slept through it. The meetings take place at night, and I forgot to drink caffeine before we left, so by the time announcements were done and it was time to discuss things, I was out in my chair, dozing on my husband's shoulder. I was really annoyed at myself because the people seemed great and the atmosphere safe and friendly. So this time, I went armed with dark chocolate pieces to keep me awake there after drinking the strongest jasmine tea in the house.

It did sort of work, and it was a meeting that was specifically about trans issues with a speaker who had a transman son, so very relevant to us. I mostly didn't zone out, though I ended up pretty whacked out on excess caffeine and sugar. WHY do people meet at night of all times? Thank God the writer's group we go to is in the middle of the day on the weekend...

Well, at least I didn't miss anything this time. I even spoke up at one point because we were talking about the relationship between sexual orientation and gender identity (they are two very distinct and unrelated things, from my point of view) and people were half-convincing themselves that asexuals (who they didn't even know the word for) and androgynous people must be the same. I know multiple asexuals and most of them identify as female so I stood up for them, which everyone, especially this somewhat creepy counselor guy, seemed to be really interested in. It seems weird to me that a roomful of people who deviate from mainstream sexuality/gender wouldn't know that if they exist, surely other variations on the same theme do also. But, I know I have a really different perspective because I know a randomly and accidentally very diverse group of people.

But I thought the best part was as everyone was leaving, because we got to meet and talk to a bunch of people who were really cool and nice and supportive to each other. We met a transman who's in high school who immediately connected with J, J's mom got to talk with another mom for a long time, and I got randomly pounced on by people. The speaker randomly ran over (like, seriously ran) and hugged me for having married a transman because her son had always had a hard time finding a mate. I thought it was sweet, but mystifying, because I honestly can't figure out why I wouldn't be with a transman/J because we're so well-matched emotionally. Then I realized it probably had to do with the fact that I'm not "out" to these people... they don't know about my disability for the most part, and this woman didn't see me asleep last week. Therefore, they don't know that J actually does way more to take care of me than I have to do for him usually. I guess if he was the only "difficult" one lol, it would be harder for most people to stick around. Instead, I probably am harder to live with, through no fault of my own. I'm so grateful to have J that him being trans and all the difficulties that go with it just don't register most of the time.

We also ended up talking to an older transwoman for awhile until J's mom dragged us out because she could see me starting to sway on my feet. We didn't get home until almost 11, and I spent the next 24 hours recovering. I would say I wish the meetings were more frequent, but if they were I would be screwed. Someone should put a meeting during sane hours, just for me.

Monday, November 7, 2011

Like a Narcoleptic in a Mattress Store

I may have found the perfect Narcoleptic career: mattress store model! You just fall asleep in the front window, and the people walking by think the mattress you're on will help them sleep. Warning: May Be Mistaken For Mannikin Except for Snoring. XD If only someone would PAY me to sleep...

Well, I was at a mattress store yesterday, and let me tell you, I have never had that much trouble staying vertical in a store before. Just sitting on the cushy new mattresses made me too comfortable to stay awake. My husband was highly amused that he had to continuously poke me every two minutes when it was time to test a different one. It didn't help that it was cloudy outside, approaching sunset, and that I was pretty tired. I'm hoping it's a good sign anyway, that when our new mattress comes I might sleep better on it than I do on our two old-ish twin mattresses on the floor. It may come tonight, which means I could immediately at it to my various sleep experiments of the moment.

I hope it works; I need all the help I can get this time of year...

Thursday, November 3, 2011

Happy 5AM, Everyone!!

I HATE MORNINGS. Especially when I find myself out of bed before the sun rises. I'm fairly certain that this explains why winter is my least favorite season (Coming Soon! Ugh). Not only do I despise the cold, I hate being awake when it's dark out, and in the Midwest that's impossible to avoid for six months out of the year.

Maybe it's because I was afraid of the dark as a child (no wonder, as there were actually monsters in it for me). Or it could have to do with how much harder it is for me to stay awake without natural light helping me. I have my worst nightmares and hallucinations in the dark, and I'm pretty sure natural light is the main reason I can safely nap in the middle of the day. Either way, during the fall I always seem to have a harder time dealing with sleep, and it's that time of year again. I swear over the last week I've had just a couple of hours of non-nightmarish sleep a night while sleeping over 12 hours. So lately I decided I'm shaking this nonsense up. As my latest experiment of many, I tried using caffeine to stay up and my husband as an alarm in the morning in order to shorten my night. So I slept from 10PM (yeah, that's late lol) until around 5:30AM and the condensing did seem to help. I would have been asleep while walking around this morning if I hadn't immediately showered to help me wake up. Aside from being pretty useless for anything other than surfing the internet this morning, it seems to have worked. I only remembered one aggravating dream during my shower and my body feels more rested than usual.

Whether or not my head will clear enough to not mess up everything I touch today, lol, remains to be seen. I may even read this post later and be like, wait, what?

Anyway, I apologize for the lack of any update for so long. I would say I've been busy, but really I've just been surviving lately.

Oh, a disability update: all the paperwork is in and I've had a psych evaluation, so now I'm waiting. The evaluation was pretty comical (Now count backwards from 100 by 3's! and repeat these series of numbers backwards after me! do you ever think of dying? do you ever talk to anyone?). Who knows. We will see.

Wednesday, August 24, 2011

That Song I Mentioned Once

I found it! It's by Third Eye Blind, called "Narcolepsy".

I'm on a train, but there's no one at the helm
And there's a demon in my brain
Who starts to overwhelm whelm whelm whelm whelm
And there it goes, my last chance for peace
You lay me down, but I get no release
And I say I, I try to keep awake
I try to swim beneath
I try to keep awake
But I, I can feel this narcolepsy slide
Into another nightmare
And there's a demon in my head who starts to play
A nightmare tape loop of what went wrong yesterday
And I hold my breath till it's more than I can take
And I close my eyes and dream that I'm awake
I try to keep awake
I try to keep awake
I try to keep awake
But I, I can feel this narcolepsy slide
Into another nightmare
I read dead Russian authors volumes at a time
I write everything down except what's on my mind
Cause my greatest fear is that sucking sound
And then I know that I'll never get back out
And there's a bone in my hand that connects to a drink
In a crowded room where the glasses clink
And I'll buy you a beer and we'll drink it deep
Because that keeps me from falling asleep I said
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
Still I find this narcolepsy slide slide
Into another nightmare
Keep awake, keep awake, keep awake
And I can feel this narcolepsy slide

Link to video:

I really like what she did with this video. Totally fits what happens to me a lot. :D

Tuesday, August 23, 2011

On Remeron for a Reason

I don't think I've written a whole lot about Remeron (my anti-depressant) on here. The thing goes somewhat unappreciated, maybe because there isn't anything to complain about. It doesn't give me any side effects so I mostly stopped noticing it was there. Or, maybe, my memory is simply bad enough that I've forgotten I'm on any meds anymore. But every time I manage to run out of it, I realize just how much help it is.

A neurologist several years ago put me on it because I was both depressed (had been for years) and needed extra help getting to sleep (as you all understand). I tried the generic first and it worked awesome. I felt like a new person. I was suddenly able to have hope for the future again and became usefully optimistic. I figured out how to smile. But then the side effects started- my muscles started to hurt. At first I thought I'd just pulled something, until I noticed it was happening to a bunch of muscles and would rotate around and change which ones it affected for no apparent reason. I tried staying on it but by the end of a month I was in constant pain. I felt so good otherwise that my doctor put me on the brand name instead and, just like we were hoping, it worked- no muscle pain, but all the good effects were still there.

When I got off of Xyrem a year ago, I stayed on Remeron, and I was glad I did. I didn't know how glad until the first time I ran out. I switched from the mail order system to picking it up from pharmacies because we kept moving, and with my memory you can imagine what would happen literally every month. I would get down to five tablets and start thinking I should refill it. I'd remember every night since I take it before bed, but forget by the morning. I wouldn't write myself a note until I was down to two, then finally make it to a pharmacy in the middle of nowhere, where they would have the generic or nothing at all and have to order it, and this would always happen to fall on a Friday somehow, so then I would have to wait until Monday and not take it for one or two nights.

The first time this happened, I was expecting to feel depressed. Instead, sleeping just got ten times harder. My dreams got more persistent, intense and disturbing. I did notice a drop in my mood but I was more concerned about the lack of sleep. On a good day I'm petty discombobulated, but without Remeron I get even more out of it and confused.

You would think, with such a big difference, I would learn after the first few times, but no. I keep running out. I think I've remembered twice out of the last ten or so times. I finally (now that we're settled again) switched it back to mail order, three months at a time, so it will no longer be up to my extremely efficient brain. But not in time to avoid it happening again this past weekend, of course. The first night I didn't have any, I just stayed up. My husband and I drank lots of caffeine, ate tons of cookies (Uqi's chocolate chip!!) and watched Stargate Atlantis. Between that and playing cards we managed to stay awake until around 2AM. My ploy sort of worked that night. I got up around 8 or 9 as usual so that I mostly skipped the dreaming phase that gets so much worse without Remeron.

I was feeling pretty smug (though more sleep deprived than usual) when I went to pick up my Remeron yesterday, until they told me that it hadn't come in and they couldn't get it until today. Feeling exasperated with myself for getting in this situation to begin with, I didn't try anything fancy last night, just got in bed and really wished that I hadn't.

I was looking at star charts like in Stargate SG-1 (which we started rewatching yesterday) when somebody came in with some fried chicken in a plastic bag and told me I was supposed to deliver it to this Buddhist monk. Apparently she lived at the top of this really steep hill even though we were supposedly in my extremely flat hometown. Actually it was more like a small mountain, with these crazy round boulders making it up. So I'm really hungry, climbing this weird mountain, sort of light-headed and trying to determine if a) the chicken is gluten-free and b) if it's okay to eat somebody else's lunch. I poke at the chicken and it seems GF so I try a piece. It's not tasty but it isn't poisonous either, so I keep eating it. I get up to this temple on this mountain and deliver the chicken and this monk lady is asking me all these really philosophical questions about stuff. I'm mostly just confused but sort of happy because the stuff she's talking about is interesting, but in the course of that I forget to deliver the chicken and just keep eating it. Then she sends me on my way and I'm wandering around my aunt's house seeing everything she's recently remodeled. Then a bunch of my cousins are there and we're taking my great aunt to see a newly flooded area of the city. It was clearly a highway before, but now the ocean is there, and a couple of highway bridges are acting like piers. We walk out on them, talking, and I'm telling them the whole city is going to be flooded soon.

So, this dream's not too bad, you're probably thinking. Well, then I feel pain in my mouth on the inside of my bottom lip. I get all annoyed thinking it's probably just something I accidentally bit as I was eating all the GF fried chicken. It's bleeding a lot and the blood tastes metallic like blood does. I start trying to find somewhere to spit it out because it tastes disgusting. It starts welling up more and more and gets all over my hands as I try to hold it inside my mouth. I find a dirty sink in an art class and spit the blood out into it, but it keeps coming and the texture turns really globby and clotted. The texture disgusts me even more and I just keep spitting it out, hoping it will stop. It tastes horrible and I feel nauseous.

It slows down a little, thankfully, but it tastes worse and worse, almost like rotting. In the sink, blood is mixed with old acrylic paint that many students have washed off of brushes. It makes a horrible, bloodstained rainbow.

Needless to say, I got up right away and went for the caffeine. I'm never under-appreciating my antidepressant again (until, you know, I forget about this whole thing in the next five minutes).

Wednesday, August 3, 2011

Confusing the Heck Out of Normal People

Well, our wedding went great, lots of people showed up and it was generally awesome. (Apparently the disasters stayed in the planning and once we got to Omaha, it was all fine.) Then, for our honeymoon we drove down to visit my hometown and then back up, slowly. All in all, it was a good break from real life, except for all the people thinking my husband is my wife because we hadn't told them about the whole trans thing yet. But we survived and even had a good time, talking or just being for all those hours of driving.

Some time on the last day, as we were heading up Illinois for five hours, we started tallying up everything we have to change our names on. The list ended up somewhat overwhelming. I had changed my last name and J had changed his first and middle via the marriage, and between us, all sorts of IDs, insurance things, and bank accounts were now outdated. So, as soon as we got home and minorly settled (as in, boxes piled everywhere in the downstairs of my in-laws' house instead of in the car and basement) we set out to start the process.

Our first stop was the DMV to update J's drivers' license and get me a non-driver ID to replace mine. The first person we managed to confuse was the information desk guy. We explained how we had changed our names due to marriage and needed new licenses in this state since we had moved. He was like, sure, and then we handed him our shiny marriage certificate. He blinked at it multiple times to make sure he was reading it right. Then he looked at J and back down at the proof that my husband has changed his name from a very feminine name to a male name. He asked us again just to make sure, then shrugged it off and got it set up.

Then desk guy explained that I need proof of residency in the state to get my new license, and I asked if it was the same for a non-driver ID. He said it was and then said quickly, "...but then you won't be able to drive!" And I was like, "yeah." And he was like, "You know you can't keep the license from the previous state if you do that, and you'll give up the right to drive." He went from skeptical to really confused when I said lightly, "yeah, I know." I didn't explain to him that I hadn't driven in two years and if I did, that it would be really dangerous and not worth the energy required anyhow. I mean, I look perfectly normal and I'm only 25.

So with that desk guy, we started our official Body Count, aka how many government officials we had confused so far: Me: 1, J: 1. We decided to keep score because really, how is it not hilarious? Plus, we're interested in who can raise the most eyebrows: the 25-year-old disabled girl or the guy getting a sex change. Who will win??

Next it was getting J's new photo, which I sadly missed because I was in the bathroom, but apparently it was really funny. The guy doing the photos for people was this really outgoing, chatty fellow who looked like somebody's friendly grandfather. Apparently he was super awkward trying to figure out how to address J, who hasn't yet started testosterone (next week!) and has a feminine-looking face, but dresses, talks and acts very male. So I missed that, and didn't get a shot at confusing that guy since I have to wait on my ID until I bring in proof of my address. That made the Body Count J: 2.

We sat and waited until we got called to finish the process, which was done by a strict-sounding and annoyed woman who decided to be suspicious at first rather than confused. She triple-checked that J wanted his whole name changed and was pretty short with us, but it was most likely just the long line. Then we were just waiting on it to get printed out, now with the score as J: 3, Me: 1. Finally, photo dude waves us over to avoid calling out J's new name which obviously weirds him out, lol. Sniggering, we left.

Our other stop of the day was the closest social security office. This time, we only spoke to one person who did both of ours. He was younger than the DMV people, or maybe just less easily ruffled, because when he saw J's old and new names, he only paused for slightly longer than normal in between sentences. We decided that didn't count, though, because it didn't even make him awkward. I got my second score of the day, however, when he asked me for my social security number and it took me ten minutes of close-eyed concentration to come up with this number I know very well and use pretty often. It probably didn't help that I was swaying off balance and speaking really vaguely since I had forgotten to bring a snack and was looking and feeling light-headed. He looked really worried about me and surprised, even after I came up with the number and managed to actually remember my mom's maiden name, etc, without missing a beat. So after those two stops, the score stands as Me: 2, J: 3. I'm optimistic, though, since I haven't gotten a chance at two of the three DMV counter people yet, that I may win. It's not every day a perfectly ordinary-looking young person trades in their right to drive, after all. But who knows. The sex change may win in the end. XD

Tuesday, June 21, 2011

Wedding Plans: A Disaster Movie

As I might have mentioned I've been planning (or attempting to plan) my wedding since we decided on a date around November. Since then, the universe has been doing its best to foil everything, to the point where it's seriously getting comical. XD

Well, from the start, as a legally gay couple, we can't have the thing in whatever state. All the states where our families live don't have legal gay marriage, though at least Illinois will recognize it as a civil union after some other state does the dirty work. Not that that does us a lot of good yet. Fortunately, Iowa is allowing it at least for now, much to everyone's surprise. No offense to Iowa, but it isn't the first place you think of when you think of inclusive rights. It's like, the first place you think of when you think of corn fields, pig barns and windmills. But who am I to complain. We even were living there when we started planning, and thought we would be for several years. Plenty of time to get married and enjoy the legitimacy, official status and things like me being on my transman's insurance even before he gets surgery. So we set a date, now only a couple of weeks away, excited to become bound together for life officially.

We had the thing mostly done after a few months when we hit a snag and decided to switch parks because of various constraints on what we could put up and rent at our original park. And, me being me, the lack of bathroom there posed a problem. We had figured out everything else except our hotel and the flowers. So we went down to the area we had chosen (the only place my relatives could easily fly into from Texas) and chose a better park we liked even more. We loved this park; everything about it was perfect. It was private, allowed our dogs, had a great pavilion with the perfect seating, and a deck onto the Missouri River (I have a thing for water). So we booked it, even more excited then before. While there we found a great P.F. Chang's for the rehearsal dinner (a restaurant famous for gluten-free options- If you're a Celiac and like Chinese food, GO THERE). We returned to our home in Iowa, pleased with ourselves.

By then we knew that we were moving back to Wisconsin for an indefinite period of time to live with my fiance's parents again. Both J and the school he was teaching at decided separately that he wouldn't be continuing with them next year. We applied all over the country for a new teaching position, but then everything changed when we realized J is going to go through gender transition this next year. After all, the public school system isn't really the best place to do that. Still, the wedding was on, mostly planned and going to be in Iowa whether we lived there anymore or not because it's the only state in the Midwest where we could do it.

And that was when all the flooding began. You've probably seen it on the news. The Missouri is closing roads and chasing people out of their homes, and because of where our perfect park was, it was the first thing to be underwater. We got an email from the county park people right after the flooding began. Frustrated, we started looking for somewhere else to have it.

It took us awhile to give up on having it outside, then awhile longer to give up having it on the Iowa side of the river. Meanwhile we were moving and I was coming down with mono. Everything was up in the air for awhile. Then J's older brother called us to tell us about a really nice indoor place in Omaha, complete with art gallery and Asian theme, that was full of natural light. We really liked it, and decided it was worth having our wedding ceremony happen across the river from the official paperwork. Relieved, we booked it and agreed to have two ceremonies: one five minute legal one and then one for our guests.

And then I got really sick and went to the doctor to discover that I have mono. I got put on lots of meds and spent the last week in bed, slowly starting to feel human again. Unfortunately, it was basically guaranteed that J caught it from me because we share glasses and other dishes (and make out >.>) all the time. Oh great, we thought. I'm almost through the worst of it and will most likely be totally fine by the wedding, but he's just starting to show fatigue. And that means, unless we're extremely lucky, he's going to be sick on the 9th. As a virus it could last any lengthy of time and all you can do to speed up healing is lie down a lot. But you also never know; he's very healthy most of the time, so fatigue might be all he gets. And because we don't know for sure, we don't want to cancel after all we've done getting the thing planned (not to mention all of our guests having bought their plane tickets).

So we're thinking, okay, so what else could go wrong? Volcanoes? A lightning strike right on the place we chose, instantly vaporizing it? I even put a joke in my mass email about it. Then we start hearing about nuclear reactors getting flooded upriver. Even I didn't see that one coming. Nuclear reactors? Really? So I asked my dad, who has worked in them before, if we should be worried about this because my mother-in-law is freaking out. He says that no, they were able to shut them down and therefore people in the area aren't in any danger. So I'm like, cool. At least my wedding won't give anyone radiation poisoning. (What is with all this?? Right?)

And then I start hearing that they might shut down the Omaha Airport. Now, out of all this stuff, that has the potential to kill it. There are only a few people driving and almost everyone is flying in there, including my parents. At least they've said they will drive if their flight gets rerouted, but the other guests I'm not so sure about. It kills me because at this point, I just want to get the damned thing over with so I can stop messing with it. Honestly, I'm not into weddings. I wanted to elope but J and I decided we would have a ceremony so our families could be there. Also, when it hasn't been legal for very long, it's almost a statement saying, look, we may be two women (so we thought at the time anyway) but we're just a normal couple. And we weren't sure how our extended families would react, so it was a way of including them in the process, allowing them to meet each other, and before it got irritatingly complicated, I was starting to actually look forward to it. J is changing his name when I do so it's also a step in his transition.

In other words, I want this to happen, but the world may not. I don't know which would be worse: changing the date to the fall sometime or just doing it in a closer county without any of my family or friends present. I don't want to wait, I don't want to plan another big thing some other time, and I don't want to have to leave it out of reach of my family. All the choices suck.

Now I'm left to wait and see. What happens with the flooding in the next two weeks will most likely determine its fate. I decided I don't want to cancel it all unless the airport closes because that way, people will get their tickets refunded. I'm afraid that if I cancel it short of that I'm going to regret it. So I might be getting married. Or, the world might continue to pretend to be the movie 2012. Fingers crossed is all I can do.

Saturday, June 18, 2011

Me vs. Giant Piles of Stuff Everywhere = Disaster

Life lesson #1 learned in the past two months: moving four times in two months is a Bad Plan. Let me chart this out for you:

Step 1: Rental house in Iowa to RV park in Minnesota in order to escape sewage leak making us ill (half of houseful of stuff into RV, half into parents' house in Wisconsin). Two humans, two cats, two dogs, six potted plants.

Step 2: After job ends, drive RV back to Wisconsin, thinking we can live in the driveway until we can move into the downstairs of the house (which involves major work because we have to move my in-laws upstairs so we can be downstairs and I can therefore vaguely function in theory without expending all of my energy going up and down stairs).

Step 3: We find out there isn't enough power for air conditioning in the RV, and it's 95. I attempt to live in the RV anyway. but keep having to use the guest room upstairs because my dogs are overheating. The cats had to move inside immediately. Meanwhile, my fiance is driving a friend around the country for an entire week, which means it's me going up and down stairs trying to keep everyone alive and quickly burning out.

Step 4: While living with my dogs in the RV when it finally cools off enough, I find myself getting really sick with cold-like symptoms. My fiance gets back, roadtrip done, and it occurs to me that I feel worst while in the RV, which, because of lack of running water, we haven't been able to clean or empty the tanks of for two weeks. And so we move completely into the upstairs guest room, severely limiting what I can do.

The Result: I only have two or three roundtrips every day on the stairs before I'm unable to muster the energy to go up or down anymore, which means I have to think carefully to plan everything and my fiance has to do almost all the work taking dogs outside or cooking (formerly jobs I was proud I could do). Meanwhile, when we're upstairs the dogs are unhappy and have to be crated because we're living in a maze of box piles and it isn't safe for them to roam. When we're downstairs, the cats stand on the stairs and meow piteously the entire time we aren't up with them until everyone in the house wants to commit kitty murder. The result of this is two constantly stressed out and puking cats, my dachshund having diarrhea and needing no less than four bathroom breaks during the night, which my fiance has to do because I can't go up or down at all at night or I will fall on my face. I keep running out of food because I can't keep track of what we have since I can't go in the kitchen whenever I want to, I can't keep anything clean because a) everyone's throwing up and b) there are piles of laundry everywhere and boxes and everything I need is always on the other goddamned floor. When I'm downstairs, there's access to the outside for dogs so I can actually take care of my dachshund's needs, but there's nowhere for me to lie down. Meanwhile, I'm ill, my fiance is having a tough period and is emotionally a wreck (he hates them more and more as time goes by), we're discussing hormone treatment and arranging lots of doctor's appointments as we're trying to help my mother-in-law very slowly move ten years worth of stuff upstairs while trying to get my father-in-law to at least think about moving the furniture sometime this century, and it's still like everyone except me is dragging their feet. Which, if switching the house around had been my idea, I could understand- I never would have asked to take over the master bedroom because even if I need it, it's their house, they get first dibs, no question from me. But my in-laws, the ones dragging their feet because something is always coming up, were the ones who convinced me that it would be good to live on the first floor, leaving me in this ungodly in-between state. And over all I'm glad they did, because it will make my life possible instead of physically impossible. In theory, even the animals will like it better. If, you know, they can keep any food down for the next month as nothing continues to happen, I keep getting stuck on floors, my fiance has to do everything and I have to try to live in a giant forest of boxes with all of my stuff spread out over three different floors, waiting.

Friday, May 6, 2011

Disability Daily Activities Worksheet- My Answers

As mentioned in my last post, I've decided to take the long road of applying for disability in order to get insurance and hopefully a small amount of income. I'm still researching the process with my mom's help, so don't have a lot to tell you about it yet, but we found a worksheet that I've filled out explaining my condition. The form itself is copywritten, so I'm just going to copy and paste my answers to the questions to avoid getting in trouble.

So, here's more about my inability to work due to my severe narcolepsy... hopefully it helps someone to relate or understand. If you want the actual form, it's from .


1. TYPICAL MONTH. Please state how many good, fair, and bad days you have each month. (Consider a month to be 30 continuous days.)

a. Good Days -- days when you do well and complete all living and home care activities.

Total good days a month: 1 or 2

b. Fair Days -- days when you function with serious difficulty and fail to complete some living and home care activities. Total fair days in a month: about 21

c. Bad Days -- days when you function very poorly and fail to complete most living and home care activities. Total bad days a month: 4 or 5

d. In your own words please describe how the bad days and fair days are worse than the good ones.

On a good day, I can be mentally focused on productive activities for much of the day as long as I spend a lot of the day lying down. I will need to take a nap in the middle of the day for ten or twenty minutes and caffeinated tea might be required to keep me going. On fair days, that is, most of the time, I can do maybe one hour of activity before I need to lie down and take a break, and by the afternoon I have to stop all activity for the rest of the day as I’ve run out of energy. On a bad day, walking to another room exhausts me and I can’t do anything besides rest. If I try to push past and do things anyway, I end up bungling them up and needing to spend the entirety of the next day recovering.

e. Are there days when you don't go out because of your health? If yes, how many days a month does your health keep you in?

I stay in most of the time as my partner works and I can’t drive (I choose not to drive a car because I know I’m not awake enough to be a safe driver). In a typical month, I may have the energy to take my dogs on a short walk maybe 5 of the days if I’m lucky. Otherwise I only leave with my partner to run errands, during which I have trouble holding conversations without falling asleep and often leave the thinking and shopping up to J. Without my spouse, I would not feel safe leaving the house due to lack of alertness.

f. Compared with a year ago, are you functioning: Better? Worse? About the same?

I’ve been steadily getting worse for the past four years, after medication stopped working for me, even though I remained on it until a year ago when the side effects made it impossible for me to keep taking it.

2A. Do you have serious difficulty taking care of any personal needs, including the following, due to your medical condition?

Bathing, Shaving, Hair care, Dressing, Eating, Using the toilet, Getting to the toilet

I can manage these fine as long as I pace myself and only do one thing at a time.

Using stairs

Stairs have always been exhausting for me and I’ve learned to avoid them as much as possible. Going up or down just one flight makes me too tired to stand or walk much when I get to the other side. If I am forced to live in a house with stairs (which happens when visiting relatives for short or long term) I end up trapped on one floor, mustering the energy to go up or down only when in dire need (like when I get really hungry or need to go to bed).

Holding onto objects

I can do this fine when feeling my most awake, but the more tired or sleepy I am, the more I drop things that I pick up or knock things over while trying to reach for something. My hand-eye coordination is terrible.

Understanding/following instructions

I have a hard time with this; I usually have to ask for repeats, and sometimes I still forget before I can accomplish the task. Conversations of any kind are frustrating, exhausting and nerve-wracking for me, especially with people who I don’t know well or who don’t know I have narcolepsy.

Making decisions

When given several days or weeks, I’m excellent at making decisions, but any faster than that I panic because my mind works too slowly. I also easily overlook important factors in the decision and usually need to be reminded of them repeatedly. Even seemingly small or unimportant decisions are hard for me to make quickly; they still jamb my brain.

Doing things on time

Having deadlines is difficult for me because I never know when I’m going to have a bad day, so despite my best efforts, when I was in school I would often need extensions on projects. I have had enough trouble completing the work and keeping up on assignments that I have had to drop classes before, and this is one reason I don’t take any classes anymore.

Finishing things

I always finish what I start. The only thing is that it may take twice as long as someone else, sometimes months or years, because I have to pace myself and do a little bit at a time.

Using the telephone

I hate using the phone and my spouse does all of my “business” calls for me. I tend to fall asleep and have trouble keeping up with whomever I’m talking to, or I forget why I was calling in the first place, or I don’t remember a key piece of information. I remember visual information way better than audio, which tends to go in one ear and out the other, even when I’m concentrating. I only make casual phone calls, because my friends and family know about my condition and I don’t feel ashamed or embarrassed because they understand why I fall asleep or stop making sense while talking to them.

Personal business/finance

I can do any of this that doesn’t involve talking to people as long as I choose my more alert moments to do things like pay bills or check online accounts. Something that takes longer, like taxes, really takes my energy and I have to hand it over to my spouse when I get too tired to continue.

Caring for others

My spouse and I have four pets who I care for, though I often need help from J in order to get all of the chores done, and on bad days, he has to do everything and I can only provide companionship for them.

Visiting people, Shopping

During these activities I almost always end up napping (no matter how short an errand), whether leaning on a shopping cart or on my spouse on a friend’s couch. Whenever we shop, we get in and out quickly in order to get me back to where I can lie down. I don’t enjoy shopping with other people because I get tired from standing up and it loses its fun long before my friends get tired. When visiting people, I prefer sitting and talking informally or watching a movie because walking around is too taxing to do for fun.

Getting places

As stated earlier, I don’t drive or feel comfortable leaving my house without my spouse’s assistance. If I lived near a train or subway system I think I could handle that, especially if accompanied, but I don’t currently.

Recreation, Hobbies

I draw cartoons and make nature-themed crafts, but this is another activity that I can do for an hour at the most before I need to lie down and not move for awhile. Otherwise I find myself falling asleep on my sketchbook and making simple mistakes in everything I attempt. Because of this and the other chores I need to do every day, I only get to draw a couple of times a week and often don’t do crafts more than two or three times a month. Even reading a book requires me to be awake enough to resist falling asleep while I’m trying to absorb information and I have to limit my time doing that as well.

Group activities, like church or clubs

I avoid groups because it is hard for me to keep track of one or two people talking, much less more people than that. I have no intention of trying to meet people in this way.

Other activities? Describe:


I used to drive despite my condition because at first, I didn’t understand how much harder it is for me than others, and then later it was the only option for me before I moved in with my spouse. I can and will drive in an emergency for a short distance, but I don’t feel comfortable in any traffic and am terrified of highways because I can’t make the split-second decisions necessary to stay safe. I lack depth perception because of my constantly sleepy state and therefore find it incredibly difficult to tell distance between myself and other cars. This makes parking nearly impossible because I can’t tell how much space is between parked cars or if I have room to turn into. I don’t feel safe driving at speeds over 25 mph. Additionally, driving takes so much concentration for me to avoid a collision that when I reach my destination I immediately fall asleep and am too exhausted to accomplish what I needed to get there to do.

2B. Do you prepare or serve meals? If so, what meals do you do?

I have Celiac disease and soy intolerance in addition to narcolepsy, and therefore must prepare all of my meals myself or have them prepared by someone who knows how to avoid ingredients that make me ill.

(a) Breakfast. Describe what you do. How many days a month? Every day
I heat up leftovers or make gluten-free toast; if I’m feeling good that day, I might scramble some eggs. I usually try to keep breakfast easy as I’m not fully awake until after I’ve eaten and had caffeinated tea.

(b) Lunch. Describe what you do. How many days a month? Every day
I usually cook a fresh meal for lunch, as that’s my main meal, but on bad days I heat up a safe frozen dinner because I don’t have the energy to stand at the stove for long enough to cook. When I do cook, I usually make something with pasta or rice and vegetables. I’m careful to eat as much fresh food as I can because otherwise I end up feeling even more run down than I would anyway.

(c) Dinner. Describe what you do. How many days a month? Every day
I usually eat leftovers, snack food or something easy and frozen for dinner because I’m not usually hungry enough to cook anything and by the evening I’m almost always out of energy.

(d) Does anyone help with meals?

My spouse helps me cook (or rather, cooks for me) if I’m having a bad day and he is home. He also helps by mostly feeding himself so that I don’t need to worry about always cooking for him.


a. Describe the home care activities you do regularly.

I vacuum, do laundry, wash dishes, keep the house organized, clean the litterbox for the cats and clean up stains and animal messes. I also keep our animals (two dogs and two cats) fed, watered and groomed. I spread these chores out pretty evenly over a week or two in order to get to them all (except feeding the animals, of course!).

b. Describe the home care activities which other people do around the place you live.

My spouse carries laundry for me, especially when stairs are involved, takes the dogs outside for their bathroom breaks, takes care of the yard, fixes things around the house and does anything that takes more energy than I have at the moment it needs to get done. He often picks up the slack when I’m too tired to clean something, feed the dogs or do other chores.

c. Describe any home care activities which need to be done, but do not get done because of your health.

I rarely get around to sweeping the floors or cleaning up after the dogs outside. I used to dust all the time but I never have the energy anymore. Laundry or dishes often build up quite a bit before I get to them.

d. Did you do things in the past that you don't do now due to your health?

I used to walk the dogs at least once a day myself, sometimes twice, but now I rarely am able to even take them around the block and leave their exercise to my spouse. Also, I used to be the only one in charge of feeding them twice a day; now I split that duty with my spouse or turn it over to him entirely.


Do you have serious difficulty doing any of the following on a sustained basis?

Sitting, Standing, Walking, Crawling

I have trouble remaining awake while sitting and holding my upper body upright for more than maybe ten to fifteen minutes. When standing, I need to lean on something and even then I can only stand comfortably for a few minutes before I need to either move around or sit down. I have fallen asleep standing up, leaning my weight on the nearest wall before. Walking slowly, I can keep going for about ten minutes before I need to sit down. The longest I can stay on my feet at one time is probably half an hour, and that is with significant discomfort and concentrated effort. Crawling, as it requires my whole body, is more exhausting- I even avoid crawling across my bed if I can help it.

Lifting, Carrying, Crouching/squatting, Pushing/pulling with hands/legs, Reaching up, out, down

I can’t physically lift more than a couple of pounds with each hand. Using both arms, I can barely carry my 15 pound dachshund for a few minutes, and that makes me exhausted. I can’t lift much of anything above my head and am easily thrown off balance. I can crouch with one or both hands propping me up, but without them I fall forward. As for pushing and pulling, heavy doors require my full body to open. I have considerable force if I push with both legs. Reaching with my arms, especially down, often unbalances me and causes me to feel like I’m about to fall.

Working productively all day, every day, year round

This has never been possible for me, though I have tried to work part-time. All five of my attempts either ended at a set time, thus saving me from being fired, or I had to quit because I felt I couldn’t complete the tasks assigned me. Even something as simple as making photocopies was extremely stressful for me and I got taken off of that duty because I kept messing things up and getting confused. I tried to tutor English once, but I had to quit before I had been at it very long because I kept falling asleep in the middle of sessions and it was a struggle to keep my clients from realizing this. When sitting, I fall asleep; when standing, I get too fatigued to function after a short period of time. I’m a mess on the phone because of my memory problems and it’s difficult for me to keep track of anything in general. I enjoy cleaning, but it’s so physically demanding that I can’t do it for more than ten minutes at a time, and then it takes me an hour to recover. I can’t focus or concentrate in a reliable way and communicating with other people is frightening and stressful for me. I’ve looked into dog training, working from home and creating art to sell, but I can’t escape the fact that I simply don’t have the energy to sustain any activity long enough to make money doing it or meet any kind of schedule or deadline.

Functioning in bad environments (for example, risky places; environments of heat, cold, or humidity; those with pollutants, fumes, drafts, or irritants like noise or vibration)

I can’t function in these environments because I easily become ill, any distractions to my already limited concentration are disastrous (including any feelings of physical discomfort such as heat and cold), and I’m not alert enough to effectively deal with danger.

Other limitations? Describe:

Because of my gluten and soy intolerance, I find travel difficult as it is hard to find food I can safely eat that is made by anyone other than myself. I must carry safe food with me at all times if I don’t have a kitchen easily available, or locate one of three safe restaurants.

E. Anything else?

Because of all of the above mentioned limitations, I suffer from considerable anxiety when confronted with new situations or new people.

Tuesday, May 3, 2011

Life Explosion

Well, life is settling back down again finally. We were able to borrow J's family's RV for this last month he's working at the high school here, and finally got moved into it and out of the hotel. The entire saga had us moving us and our pets no less than seven times in and out of hotels, our broken rental house (which our landlord kept trying to get fixed) and finally into the RV just a few days ago. Our stuff from the house is packed in boxes ready to be moved back to Wisconsin, where we're going to flee as soon as school ends and J is done teaching.

The RV, while crammed full of stuff and animals, at least doesn't smell like sewage and affect my sensitive immune system. It is also less area to keep clean than the house, though the one thing that was nice about the hotel was the fact that I didn't need to clean anything. This was a good thing because I've been completely flattened from exhaustion. Between the stress, parents poking us constantly and needing to keep everyone updated, the lack of fresh food (thank God for GF frozen dinners or I would have been even more screwed), long hours in the car and keeping everyone healthy and safe through the upheaval, it must have been the longest three weeks in existence. Various things forced me to do too much (like my fiance getting really sick for two days, during which I had to take care of him and even drive to Walmart once) and then it would take even longer than it normally would for me to recover.

In the middle of all of this, we had planned months earlier to go visit J's parents over Easter weekend seven hours away in Wisconsin. My parents were even flying up from Texas, as we wanted our parents to get to know each other better (they had only met once at graduation). The afternoon we were going to leave, we found out that the sewage situation was still not fixed when someone came to disinfect the drained basement and discovered new flooding. So we left, hoping to bring the RV back with us after the weekend was over.

Despite us being exhausted and feeling down on life, the visit with our parents went well and I was relieved at how relaxed my parents were. We had good long talks and caught up, my parents got to meet the horses and our big dog, who they had only seen pictures of before, and reunite with my dachshund, who they adore. We drove them around to show them the area and had dinner a couple of times. It was really good.

I don't know if I mentioned it yet, but my fiance got called in to talk to his boss, the principal, a couple of weeks ago in the middle of all this mess, to find out that he's not getting hired back next year. The principal said a few pretty critical things that had my fiance's confidence in his teaching pretty well shot through for awhile. The most aggravating part is that most of the man's argument is based on something one of the administrators messed up and blamed on J. What really got my fiance, though, was the word "unprofessional". He has to be female for work, but gets paralyzed by anxiety and depression if he dresses too female, so he has to go pretty androgynous and we suspect that's part of the principal's problem. The only thing is that J hasn't come out at work and doesn't plan to, and we have no proof of actual discrimination based on J not looking "female enough". It's just a vague suspicion that I have. At any rate, we just want to get out of that town. After the house problems, all the drama at the school and feeling like we can't go out without seeing lots of people who know J as female, we really just wanted to leave anyway.

For the summer we already had plans to return to J's parents' house to help his mom with taking care of the horses and to allow his parents to go on vacation. We've applied all over the country for English teacher positions, but we know we may not get anything for this next year. If we don't, it'll be a long stay with my in-laws again. I would love that except that the stairs there make my life extremely difficult. Honestly, we aren't sure what to do in J's career next. I hear a lot of transpeople have to switch careers in order to get free of their past life as the wrong gender, and in a career as conservative as public school teaching we aren't sure transitioning would be well-accepted. My man is very sensitive about how people think of him and I worry for him. We've been thinking about how to get his birth certificate changed, but that won't fix his reference letters (which refer to him as female), his social security number, or his college transcripts, which are all things schools look at when considering you. Also, the fact that we don't know what state we're going to be in doesn't help us come up with a clear plan of action as every state seems to have a different process for something as seemingly simple as changing your name. It's very bewildering and we aren't sure where to go from here.

Another thing that has us wondering is whether or not I'm going to have health insurance next year after my 26th birthday, when my dad's company stops being willing to cover me. We had thought, as we are getting married in July and assumed we would be in Iowa next year, that I could be on J's insurance which would at least help. But, if we move to any state where gay marriage isn't recognized or at least converted to a civil union (like Illinois), we aren't married anymore and I potentially lose the ability to have health insurance through my spouse. I've finally decided to try to get on disability because we need the income (my parents are still buying all of our food) as well as insurance, but that can take years and multiple rejections. Transitioning to a straight couple might turn out to be faster.

The good news is that (I think) I should have a pretty strong case. I've never been able to work even part-time, and my mom found a form that allows me to really go into detail about what is difficult for me. As soon as I finish it, I'm going to post it here, as I think it's useful for anyone researching narcolepsy, looking for something to relate to, or for anyone to fill out to use with their application. I started it wondering if I'm really "disabled", but by halfway through I realized that was silly. Hopefully, I can convince the government of this fact.

It's too gorgeous a day to not live in an RV. The first truly warm day we've had in awhile, with the sun shining, and despite everything I'm thankful to be here. I'm thankful to be anywhere.

Friday, April 15, 2011

Somehow Surviving a Week of Total Insanity

Too tired to write... in... sentences...

1) Moved out of house to escape sewage leak and into a Super 8
2) Accomplished above at 10 PM with four animals
3) And with tons of GF frozen food and leftovers
4) Which ran out after 3 days and required me to eat steadily stranger things and rely almost entirely on a loaf of GF bread and lunchmeat from Walmart
5) Checked house every day to drop off laundry and were subjected to the horrible smell increasing until the cleanup people got there finally
6) Watched my fiance come down with horrible flu-like withdrawal symptoms from getting off of his anti-depressant too quickly
7) Nursed fiance back to health over three days while taking care of 4 animals in a hotel, one of which is a dachshund having serious back problems that require extra work
8) Drove to Walmart for emergency supplies and to the house for similar
9) Accomplished the above without crashing into anything despite sleep attacks and being exhausted, not having driven at all in months
10) Moved everyone and everything back into the still slightly off-smelling house to get away from the hotel
11) Had disappointing therapy appointment over the phone
12) Did three loads of laundry and washed giant pile of dishes (using water boiled on the stove because the water heater is still off)
13) Hoping we don't have to move out again while they bleach the basement
14) Called Mom to vent about above and started crying because it's just that insane
15) Now only awake because of blasting Britney Spears

Wednesday, April 13, 2011

Grandparents' Glass Maze House

Last night, I was visiting my grandparents at their house in small town Texas. In real life, they have a back room that they basically use to store stuff and when I was little it kind of creeped me out back there. So, of course, for as long as I've been having nightmares, some of them have taken place in there.

In the dream I was having seriously crazy drama with my cousins for awhile when we finally decided to go back into that room. It was dark and we were enjoying creeping each other out. Each time we found a new doorway, we would go through to see what was there. At first, the rooms looked like the rest of the house and formed hallways in an almost maze-like fashion, but then we passed this huge floor-to-ceiling window that looked out on a small courtyard. There was furniture piled outside in the rain with grass growing all around it.

Of course, I was like, "we should go try to get in there!" because my fiance an I have been talking about needing a couch for some time, lol. So then my cousin spots a door leading out there, but it's coming from a different direction, so we start heading that way to see if we can find it.

We emerge from the dark, cramped hallway of dark wood and wallpaper into this giant ballroom with walls and ceiling made out of glass. Looking through the walls, we see other glass rooms receding into the distance in every direction, most of them piled up with old furniture or figurines on shelves. There's a lot of stuff but it's pretty spread out between the rooms, leaving lots of empty floorspace. We spread out individually to see what's around, and I spot the door into the courtyard off to my right. I start heading over there, but I run smack into a glass wall because I'm so focused on what's behind it that I don't see it in time, which makes everybody (including me) laugh.

I look around and find the way around the wall, which happens to be a wheelchair ramp with old hotel brass railings and ugly red patterned carpet. So I run up it and around the wall and reach the glass door.

I look outside and see the courtyard more clearly. Against the wall to my left is the furniture and the small grassy space is otherwise overgrown. The blue couch I was so excited about has a big hole in it and is next to this hilariously 70s chair with a giant light blue and puke orange plaid pattern on it. My cousins have come over and we're laughing at how ugly the chair is.

Suddenly I hear barking and realize that there are three boxers (all of them brown and white) in the yard, two of them chained up next to the door and the third roaming free. My cousin opens the door and starts to step outside and the dogs go nuts. Just then, my grandmother finds us, telling us off for going so far back into the house. She goes out and gives the dogs chunks of steak to quiet them down.

And then I woke up, still wondering if that couch can be repaired.

Monday, April 11, 2011

This Ill Feeling Is No Longer Mysterious

As I may have mentioned earlier, my fiance and I have been renting a small house in small town Iowa where my fiance is working. When we first moved into this old little house, we had all sorts of problems. It wasn't too surprising, as the place had been vacant for over a year when we moved in. First, there was the plumbing, which took awhile to get fully functional. Then we had to get the water heater fixed, then before winter set in, the furnace needed help. And after that, miraculously, everything worked for several whole months!

Well, then I kept catching what seemed to be random colds. I was sick with three seemingly different things (complete with their own distinct symptoms) one after another and was totally blaming it on the weather. I mean, the Midwest is famous for immune system-wrenching spikes and drops in temperature this time of year, plus there's allergies to take into account. So I figured (especially as this spring is my first living in this area) that I was just allergic to something.

Then J, my fiance, started getting headaches and feeling crappy. He has an extremely sensitive sense of smell and was complaining that the house smelled funny a couple of days ago. I noticed it a little bit, too. This weekend we got back from a field trip to Sioux Falls (our nearest source of sushi and many other delicious GF things), having been gone all day, to discover our hot water wasn't working. It would flow, but it was cold.

Last time we had this problem, the pilot light on the water heater had gone out. So we go down to the basement to check it and--

We find that our basement is flooded with foul-smelling, tepid water. As in sewage. o.O It was six inches deep, and high enough to have triggered the water heater to shut itself off. Thoroughly grossed out, we had to decide what to do. At J's dad's urging (he works on houses) we decided to take all six of us (two humans, two cats and two dogs) to the nearest motel for a couple of days while our landlord sorts it out.

We called around and found somewhere that would take all of us in last night, and we are so glad we did. J's dad told us that if you can smell it at all, the gases can be making you sick, and I'm now sure that they were. I'm really glad that we're now all out of danger. I already feel so much better after a night of fresh air. I think it was affecting me a lot more than I realized, however faint the strange smell had seemed.

We stopped in to grab a couple of things we forgot in our haste to leave last night, and I ran in to the house myself for about two minutes. That was enough to make me feel sick again until I had been breathing fresh air for awhile. I'm not going back in there at all until the sewage is gone and the basement is bleached.

Well, we'd been saying we needed a vacation, right? XD Not quite what we had in mind...

Saturday, March 26, 2011

I Must Be Insane

Oh Wait! I AM!

Well, I've been thinking a lot about this idea for over a year. It may be some crazy dream that won't happen, or else maybe I can end up contributing to the world, I don't know. I don't pretend that this is going to necessarily work out. But it's something I feel that I have to do.

I'm tired of going into the health section of bookstores and finding nothing about Narcolepsy or what it's like to experience this illness. I'm tired of keeping my feelings and thoughts in a small corner of the internet where only a small audience can find them, afraid to give this link to too many people I actually know. I'm also tired of "not contributing financially" to my family and getting crap for it. And so, for better or worse, I'm going to attempt something outrageous. I'm going to write a book.

I'm under no illusions about instant fame (HA) or even my slim chances of ever finding someone to publish such a thing. I make no promises, except that I'm going to write this thing and if no one else will have it, at the very least I can put it online somewhere and link you, my mysteriously interested small audience.

I have hope that I can get something interesting down because this has been stewing in the back of my mind for a year, and suddenly it's taken a sort of feverish hold on me. So there it is: my new project. A book about Narcolepsy.

Who the heck knows why my brain has grabbed onto this. All I know is that I know better than to ask. I'll just go with it, and see what happens.

Thursday, March 24, 2011

The Gender Therapist Adventure

A couple of entries ago, I explained how my girlfriend discovered the root cause of her depression problems (being trans) and will now be referred to using male pronouns or the initial J. Well, we've talked about it a lot, thought a lot, discussed and considered what to do about it. The whole time, he's been experimenting with wearing male clothing when not at work and so far seems to be doing a lot better. We decided, having read a lot of advice online, that maybe we should look for a gender therapist.

Various trans-oriented resource sites stress the importance of getting a therapist who specifically specializes in gender issues. Apparently, if you get one who doesn't, they're a lot less likely to understand your life issues if you're a transperson. Depression and body issues for transpeople are very different than most therapists are trained to deal with. So after finding this type of advice all over the internet, we decided that if we wanted to work on J's depression with professional help, a gender therapist was the way to go.

So we searched and (unsurprisingly) found that there aren't any in Iowa and the closest one that looked promising is in the Twin Cities, three and a half hours away. And so we made an appointment two weeks ago, J took off work, and we figured that even if it was a disaster or unhelpful, at least we would be near the closest Whole Foods for an afternoon. Yesterday arrived and we threw the dogs in the car in the morning, made sure our cats had extra food, grabbed some Larabars and started driving.

The weather was pretty terrible. It was windy and snow-raining and foggy and the roads were really wet. As we got farther north, the mix turned into snow, which started to show up piled everywhere. Our appointment had been rescheduled for later in the day, 3 PM, and we were glad because it took awhile to get there and the roads in St. Paul were pretty bad. To top it off, we kept getting lost because our maps weren't as helpful as we had hoped. We ate at Whole Foods (sushi!) and rushed through the store to pick up a few things (gluten-free PIE!), running out of time.

We got lost again between Whole Foods and the therapist's office, but we made it there at exactly 3. We rushed upstairs. The office was dark- not a good sign. It was only then when we looked at our messages that we found out that the therapist had called us hours before to tell us she couldn't make it. She was snowed in at her house. We were both pretty frustrated and annoyed. I mean, if we could make it to her office from three hours away and navigate the snowy streets in my dinky little Saturn (which doesn't even have anti-lock brakes), surely she could get there that late in the day from half an hour away.

So we left her a message back and headed back to my car, feeling disappointed. J is probably going to have job interviews that will require him to take days off soon, so we can't really do it again. This therapist won't take appointments at all on the weekend, and we don't really want drive that far again anyway, especially when she already didn't show up once. To console ourselves, we backtracked to a Borders we saw while we were lost, which was plastered with Store Closing sale signs, and went on a cheap book spree. Then the dogs were looking bored, so we took them to a Petsmart and they thought that was pretty interesting. We were feeling like at least the trip hadn't been a total waste.

We had picked up a few fliers in the dark and empty (but mysteriously unlocked) therapist's office. One of them was advertising a trans support group that happened to be meeting on Wednesday evenings. We decided to go, since we had nothing to lose. I mean, our main objective in going to the therapist was to talk to somebody about this. Someone who knew about it, understood, and that was detached from our family, and might know more about it than we do now. We figured we should at least try it out.

After getting lost two more times, getting stuck in the snow and having my narcoleptic self at the wheel while we extracted our car, which resulted in me driving in deep and slushy snow for a few blocks around lots of stuck parked cars, we found the right building. There were only two other people there- apparently a slow night- but they were very friendly and sympathetic. We felt so much better after talking to them for awhile and we got tons of really good information. The best thing about it was just feeling less alone. Being trans and dealing with trans problems is so incredibly isolating. Even when people are supportive, they can't quite understand if they're too far removed from these experiences, and most of the people we know we're a bit afraid to tell because we don't know how they will react. We walked out of there feeling so much better, with lots of fliers and resources and access to an entire community of people in The Cities, and even a binder to try out. My fiance had the biggest smile on his face all the way home.

Night fell as we found our way back to 35. The drive home was long, but we spent the whole way talking and singing and laughing, with our dogs asleep in the back.

Friday, March 18, 2011

Bring On the Ice Cream

Okay, so I know there's some pretty weird stuff I've been blogging about lately, related to narcolepsy and not. But this latest suspicion of mine really takes the (GF and soy-free) cake.

So we all grew up knowing two things about ice cream: it's delicious, and it's bad for you. I mean, frozen cream with massive amounts of sugar in it seems to be, according to common sense, bad for you, right? I mean, it's basically sugary fat. Can you get more unhealthy, really? Or so I thought...

For four years or so I was quite underweight, thanks to Xyrem and a complete lack of interest in cooking (a killer when you're on a special diet). My lowest weight was 92 lbs, and though I am a small person, I was around 20 lbs too light. I could feel it. My bones were sticking out and I was cold all the time because I had no fat whatsoever. I felt physically weak. I had a hard time finding small enough bras for awhile, and I was wearing size 0 jeans (which were a little loose). Many people say they'd kill for that, but I felt horrible. I felt so unhealthy. I had no energy, which, when you already have narcolepsy to contend with, basically made life impossible. I felt like one of those skeletons that show up all the time in my dreams, crumpled up on the couch.

Finally I had a falling out with my neurologist because I was sick of being a stick figure, and the Xyrem had mostly stopped getting me sleep anyway. So I stopped taking it and slowly started to recover the weight I needed. I immediately felt better, learned how to cook (what a difference an appetite makes), and started eating a ton of really healthy, homemade food every day. I'm sure the story would have been different if I'd started eating junk food or even GF frozen dinners like I had before, but on all the veggies I gained weight back slowly and flesh started showing up in areas where it was needed. A year later, you couldn't see my hip bones anymore and I actually had curves again. Soon after, I leveled out at around 107 lbs and felt so much healthier and stronger. Even so, I felt cold a lot of the time and like I needed a little bit more meat on my bones. I mean, winter in Iowa really kind of requires extra padding.

Around that time I started noticing how often I was craving cheese. I've always really liked cheese, but I had started putting it on everything. My fiance didn't mind; he loves cheese too, the more the better. Since our diet contains mostly vegetables, fruit and occasionally fish or chicken, I kind of figured I was craving dairy since it's got a lot of protein in it. I didn't worry too much about it and kept piling on the cheese. And then I started craving cheese and ice cream. I hadn't had ice cream in over a year; I tend to avoid sugar products because once you stop eating them, small amounts make you anxious and kind of crazy. But this craving was pretty over the top. So I got a little carton of Haagen-Dazs to see how it went. I like that brand because it's pure ice cream, none of this modified-food-starch-whatever-chemicals nonsense, and you can tell because it tastes insanely good, like real food. Plus a lot of the flavors are gluten-free, and actually gluten-free- no contamination at all. The same goes for soy. Some flavors have it, but only where necessary, and as long as I read to label I haven't had a problem.

So I thought, okay, it's just for a treat this week. But the craving kept up, and suddenly I was gaining weight again. I went from 107 to 113 in a week and the only difference was the ice cream. Alarmed, I stopped buying it. I've heard it's easy to get overweight if you have narcolepsy, so I'm wary. After a week without any in the freezer, I dropped back down to 107, and realized I was suddenly cold all the time again. Okay... was my body telling me that ice cream is good for it? That it needed ice cream to round out my healthy diet? o.O To have enough body heat?

So this turns my idea of health food upside own. I find myself thinking, maybe it isn't that some foods are always bad or always good for you. Maybe being healthy is about paying attention to what your particular body needs, watching how you feel. Maybe it isn't all so clear-cut. The rest of life isn't, so why would food be? Our bodies are amazing, beautifully constructed, and complex. Maybe you can't just rely on other people's advice, even that of the experts. Maybe you have to listen. The more I listen to my body, the more interesting things I discover.

I don't know what's weirder- my body legitimately needing ice cream to maintain the proper weight or the irony of something cold ultimately making me warmer. Now I keep some in the freezer all the time and pay attention to my intuition. If my body says it wants ice cream, I eat some and feel better. If I feel I don't need it then I avoid it. Now that the weather is slowly warming up I've been needing it less. I don't have to think it through. I just have to pay attention.

Wednesday, March 9, 2011


I stopped writing, not because there hasn't been lot on my mind or because narcolepsy is leaving me alone, but rather because there's been a shift of my priorities for the last month or so. There's nothing like someone you love going through a lot to take you away from thinking about your own problems.

I'm not sure if I've mentioned on here that my girlfriend, who I'm going to refer to as J, has had depression problems for most of her life. Since I moved in with her a year ago I've been working on helping her figure out the root causes of it, since I've also had it most of my life and have found my own fairly effective ways of dealing with it. Basically I'm there for her to talk to about anything, and I bother J to talk and write through things she's feeling. So far it's seemed to open up a new world of thinking about herself for her and she's discovered many things about her identity since we started. The latest of these discoveries surprised us both and turned our mental worlds upside down, while at the same time not changing a single thing about J or our relationship.

It started a month ago when we had been talking about sexuality. It's a weird issue for both of us. On the surface we are defined as a lesbian couple, but neither of us feels comfortable calling us that. Our gender roles are very clear-cut- she brings home the bacon and I cook and clean. It's almost maniacally traditional, which seems weird because neither of us have very traditional value systems. We had been talking about it on the weekend, and then J took our big dog for a walk, and when she came back she had this sort of shell-shocked expression on her face. When I asked her what it was, she said simply, "I think... I'm a dude."

We stood there and looked at each other. I felt like I was seeing her for the first time as a whole cascade of ideas fell into place. The transformation in my head went something like this:

unfounded depression --> gender dysphoria
gay couple --> straight couple
masculine "quirks" --> male personality
weird about clothing --> accidentally cross-dressing
girlyness --> overcompensating
bisexual --> wants to have male body + is straight
uncomfortable at work --> forced to playact being a woman
hates her body for some unknown reason --> IN THE WRONG BODY
Does this change how I feel about her? --> NO.

And then I really looked at her face, imagined her with short hair and told her I thought that she could pass as male if she wanted to. And started laughing and gave her a hug. I was/am so proud of her for figuring out the missing piece. She says that the realization for her came with a massive sense of relief.

We were both brain-crashed for the next week processing this. It wasn't that anything was different between us, or even about J. We just kept thinking of more ways in which it explains everything that either of us have been wondering about her. We're still coming up with things and it's been a month.

We found a great transsexual resources forum, Laura's Playground, and it's been a really good source of information since neither of us knew much about being trans before this. We decided to go look for clothes and got a bunch of things from the men's department for J. I've gone shopping with her for women's clothing a lot, and she was always dissatisfied while trying things on. She might find one thing that she could stand (and that fit well) out of ten things. The first time J tried on a guy's flannel shirt, she was smiling, it fit her, and it seemed essentially her somehow. I also cut her very long hair into a short and fairly androngynous style and it looked and felt much better to her.

At this point I'm going to switch pronouns on you, because saying "she" and "her" is driving me nuts. But I wanted to make it clear that I'm still engaged to my soulmate, the same one as before, and that I haven't switched people on you, it's just that my "girl" became my "man". Though "became" isn't the right word at all.

J has a gender therapist appointment for two weeks from today, and I'm going with him to provide moral support. I've been his unofficial therapist over the last year, and I seem to have done a reasonable job, but transpeople have unique challenges to face internally and externally and I feel out of my depth. So we'll see how that goes. J says he doesn't plan to start hormone treatment or get surgery, but if he changes his mind I'm supportive. I figure it's my job as the woman here to make sure he's taken care of. :) I've been doing that all along anyway... I think J's hoping they'll scan his brain to see if it's structurally almost male.

So the whole thing adds a new dimension to the interestingness of our life together. At least I'm not the only unusual one anymore. I don't know if I'd call us even though. It's hard to beat me, the hallucinating sleep contradiction, even with a man's brain in a female body. XD I'll just call us odd instead.

Tuesday, February 8, 2011

Therapy Cat vs. Tornado Movie Shoot Hospital

Well, the past couple of weeks my nightmares have been getting a lot worse again, but at least I have lots of furry moral support.

Last night it was tornadoes. I was a passenger in my mom's car, driving down the highway towards the beach in the area where I grew up. My mom was driving us to a hospital where she was going for work and I had tagged along. As we drove, the cloudy sky darkened menacingly, the deep grey clouds heavy and wet. It began to pour. We were almost there- I could see across the flat, grassy fields to the hospital complex, its windows lit up against the blackened sky. My mom cursed at the rain. On the horizon I saw one of the cloudy masses dip down to connect with the ground, swirling chaotically.

We sped into the parking garage of the hospital, and then suddenly we were in a big, well-lit open lobby surrounded by glass windows. The place was pretty empty, which made sense to me, because I now knew we were there to help shoot a movie. We power-walked through a dim hallway into what looked like an office. A bunch of people with cameras and boom mics and who looked like actors were hanging around there. There was an old golden retriever and a French bulldog who was wearing a frilly pink collar, apparently also ready for a part in the movie.

As the crew was setting things up, I looked out of the window and watched the heavy rain streak down the glass against the dark night. I leaned over to look straight down, and saw a small tornado headed right for the building we were in, about to take out the structure below us. I started shouting and yelling for all the people to run for the door at the opposite end of the suddenly large room.

I grabbed my mom's hand and we got through the crowded doorway, running in the group away from that side of the floor. I was terrified. I was pretty sure we were going to die.

We ran past a long wall of windows that faced one of the other buildings in the complex. As I watched, still running, the building folded in on itself and crashed to the ground in a pile of rubble, sheetrock dust rising, showing its insides. It looked straight out of 9/11 footage. I was scared and upset. We reached, suddenly, a giant open area that looked like a multi-level shopping mall, packed with people. We skidded to a stop, trying to figure out which way to go- four hallways split off. But suddenly, a deathly fire glow came shooting out of three of them, and everyone in there started screaming. We turned into the fourth hallway, which looked like it was underground. It turned into the hallways in a Japanese subway station.

I began to have hope that we might escape. And then, quite suddenly, I wasn't running for my life anymore, but blinking up at the ceiling of my bedroom.

Over the past week, as the dreams have gotten especially bad, one of our cats has started sleeping right next to me, leaning on me as if to offer comfort, as if she knows I need a hug. Normally, she's quite an elusive character and sometimes you can go all day without seeing her. Also, if you get up to go to the bathroom, she'll jump up from the bed as if offended, tail-twitching, and stalk off to the other room for the rest of the night. But this past week, instead she stays by me. She'll wait until I come back and get under the covers again, and then snuggle up close as soon as I'm comfortable.

I know she's doing it on purpose. In college, one of my housemates was having a really hard time, and this cat was always in her room next to her when she was home. The cat would sleep on top of her at night. It helped a lot. Now I think she's offering me the same favor.

Living with my girlfriend helps me a lot, even though she's a hard sleeper, because just having someone next to me makes me feel less afraid when I wake up in the night. Having our cat right against me is like getting a hug just when I need it. As soon as I wake up, she'll turn to look at me with sleepy eyes, whether or not I've moved yet, as if to ask, "Are you okay?"

Thank God for kitties. <3

Saturday, February 5, 2011

Modern Day Werewolf

All of my life I've felt like a wild animal in a cage, pacing around the walls, looking for the reason why. As a child I did everything I could to be anything other than a human. I was a dog, every species of dinosaur I knew, a wolf, a lion, even a cat if my playmates insisted on playing house instead of some more interesting adventure game. I refused to be human. Anything felt more right than that.

When I hit my teens the feeling became even more insistent. I had grown out of pretend games, but I felt like my real life was one. The people directing my life wanted only the best for me, but they didn't allow me to shine through all their plans for me. I felt lost. I didn't know who I was- only that I wasn't anywhere near who my parents wanted me to be, and I didn't know how to proceed.

The feeling of disconnection only grew. I was tired. So much more tired than seemed reasonable, or allowed. Every day in high school I was wrung out, and keeping up my grades took so much of my focus that I had literally no extra minute for things that might repair my soul. I felt broken. I felt wrong.

A lot of teens seem to feel bad about their physical body. Some of them stop eating, some find other ways to physically harm themselves. I did neither. Instead I would imagine what I wished my physical form would be. I would concentrate on having a bushy tail and pointed ears. I could practically feel a muzzle coming out of my face. An invisible and intangible coating of fur would cover me. And this began to happen when I wasn't concentrating, even when I didn't want it to. Against my will, my fingers began to fold over whenever I was relaxed, becoming the closest thing to a paw that a human hand can. I would lie down to take a nap and wake up on my side, "paws" stretched out, knees bent, shoulders crammed as close to each other as physically possible, draped over the furniture like some sort of Great Dane.

At first, the way my imagination took the concept and ran freaked me out, but it felt so right- so much more "me" than when I was upright, pretending to be a normal human being. I had recently discovered the internet (as it was relatively new, lol) and got brave enough one day to search the word "werewolf". What I found changed my life and my feelings about myself.

It turned out it wasn't just me, that lots of other people (though obviously still a small minority) had similar sensations of feeling not human. And they weren't all teens, either- many of them were older. The term to describe this unique kind of body dysphoria is "therianthropy", and those who experience it call themselves therians. Many of the sensations described, such as the feeling of "phantom" limbs (for example, a tail), sudden shifts in your perception of your mental image (known as a "mental shift") and the feeling of being in the wrong body were all things that had already become very familiar to me by happening to me on a regular basis.

On the advice of other therians, I began to research animals, trying to figure out what I was. Many of us, for reasons unknown, are some species of wolf, though there are plenty of other types, too (big cats are also common). I still remember the shock I felt the first time I saw a photo of a Mexican Wolf. I had been startling myself for years passing by mirrors- it used to really spook me to see a human face staring back at me, and I would have a moment of who is that? The second this photo loaded, it was like I was looking in a real mirror for the first time. As a matter of fact, the exact photo in question is now my profile picture on this blog. It looks more like me than anything I've ever seen. Just like most people feel recognition seeing a photo of their own face, I only feel that recognition when I see my wolf self. This is the main reason I draw myself as a wolf- to do otherwise would be like drawing somebody else.

As my sense of being a wolf has persisted over the years, I've encountered plenty of theories as to why. As a teen on various forums I found that many of my fellow therians believed that they were whatever species in a past life and the feelings of being that species had carried over. Another popular theory was that they had the soul of a non-human animal and it had- either by mistake or by design- been inserted into a human body instead. Raised an atheist with two scientist parents, neither of those theories particularly appealed to me. If we are reincarnated animals, why the bias towards certain powerful forms? If I don't believe in a higher power who spends a lot of time inserting souls into bodies, then how can I believe that he or she made a mistake? And so I've come up with my own ideas, based on my own worldview. I used to think of therianthropy as some sort of psychological disorder and assumed that the wiring in my head was somewhat wrong. Having given up the pessimism inherent in that theory, however, I've begun to think of it as more of a result of many factors. The sense of unreality I sometimes get (as well as the mental haze I lived in for most of ten years) I know now to be caused by narcolepsy. My desire to connect with other species, and the way this was denied me for most of my life, probably also contributes, as does my extremely vivid imagination. I've always been an artist and a caretaker by nature, and have felt a bit out of place with our society's expectations of me, making it difficult for me to relate to what a human is "supposed" to be. Plus, I don't feel that it's a huge jump behaviorally from human to wolf. We have similar social structures, hunting tactics, basic needs, and complex emotional lives. I think it's fairly common to see ourselves in wolves- so why couldn't I see a wolf in myself?

It may seem out there, but all I know is that ever since acknowledging this side of me I've felt much closer to who I am. I still get my "paw hands" all the time and feel like I have wolf ears on top of my head. Fortunately, my fiancee thinks it's adorable, and my friends have always accepted it as a weird me-quirk (one of them happens to be a Siberian tiger therian). While my parents and other family members have never directly found out, I doubt any of them would be in the least bit surprised. If you know me, you know I'm wolfish, whether I've told you about it or not.

Friday, February 4, 2011

Memorable Hallucinations Caused By Narcolepsy

I recently typed up a couple of my more interesting hallucinations in sort-of story format and figured it would be helpful to post them here. I remember doing a flurry of internet research before I was diagnosed, trying to find out if what I was experiencing could be termed "hallucinations", and literally all I could find were schizophrenia-related ones. Because of the lack of information on hallucinations (or, rather, anything) caused by Narcolepsy, I began to be worried I might have schizophrenia. More proof that self-diagnosis via the internet is a bad idea sometimes. XD

So, here are a couple of mine, in the hopes that the next generation of people looking for this information might actually find something useful.


I am in between, floating, when it happens.

It takes me completely off guard when it does. After all, all I was doing was lying perfectly still, waiting- letting my thoughts wander, watching faint images. The beginning of a dream had begun to form; something light-hearted about looking up at the sun from underwater, and a ghostly flying horse. Though my dream was beginning all on its own, I was still very involved in the process of trying to let go of my awareness. Prying my consciousness away from its moorings. This took a lot of effort for me and I had no inkling that this strange in-between state was unnatural.

I was focused on being completely relaxed and still. Calm--

Suddenly, from behind my head a hand shoots out, the fingers clamping down over my mouth, stifling my scream before it can begin. Pure terror and adrenaline shoot through me, putting me into instant panic. I struggle with everything I've got, desperate to escape. But the hand is extremely solid, strong and real; it doesn't so much as twitch or tighten, almost as if it was made of rock.

It is in that instant that I realize that every muscle in my body is frozen. I am struggling as hard as I can and nothing is moving. I'm helpless. I try harder, desperation growing--

My eyes open on my dark bedroom. Thoroughly freaked out, I jump up into a sitting position and whirl to face the wall. There is no one there. No hand. And there is not enough space for a whole human being to fit. I'm shaking as I reach for my lamp. I am alone after all.


In the dream, I'm eating brownies. The bites are chewy and sweet and I can feel them sticking to my teeth and gums. They're so chocolatey and delicious that I can't stop eating them, even though my teeth begin to hurt. As I chew one piece, I encounter something hard all of a sudden. I pull it out of my mouth to see what it is. My hands are sticky and covered in chocolate.

As I examine my find, I realize it is a tooth. I feel my teeth with my tongue and sure enough, there is a space where it was. In real life this would have freaked me out, but in my dream I think it's cool. I can feel the space and my tongue is exploring the crevices of it. The feeling is fascinating.

Experimentally, I begin pushing on other teeth with my tongue, and several more come loose, still attached only by a vein each. I push them and play with them with my tongue, feeling the craggy surface of the bottom of each tooth. I push too hard and the veins begin to break, loosing the teeth into my mouth. I feel pain at the moment each breaks. Suddenly I remember that these are my adult teeth and no more will grow in. I begin to panic, wondering how much damage I've done, as my mouth feels literally filled with loose teeth. Moving my mouth causes a grating sound inside my head from all the loose teeth rubbing against each other.

My mouth hurts badly now and tastes of blood. I run over to a round mirror on the wall and open my mouth. A handful of teeth fall out and rattle as they land in the sink. The sink, my mouth and my hands are thick with blood, and it runs down my face.

And then I am awake, looking at the ceiling of my bedroom, with a lingering pain and the remembrance of the taste of blood in my mouth. The first thing I do is reach up to feel my teeth with my hand. All of them are still there. I go look in the mirror right away, just to make sure.

Wednesday, January 26, 2011

25 Is The New 60

Yesterday it got up to the twenties and I was so incredibly happy. It's a sad day when the native Texan is happy to see 20 degrees F. I took our big dog on a long walk that completely flattened me because I kept walking instead of coming back inside. I had to take advantage of not freezing to death in five minutes.

Last week it was cold, and it was a hard week. The dogs had been getting really bored. I was playing with them a lot on Wednesday while my fiancee was at work, throwing squeaky toys and getting cute videos of them. My dachshund got really riled up. He seemed fine, if a little bit extra bratty, but he's got a lot of personality for a little guy so I didn't think much of it.

Then he started throwing up. I'll spare you the details, but it was very very strange. The texture and smell were really off. He also went to the bathroom in the house, like he couldn't hold it. And he went from overly-boisterous to really quiet and curled in on himself. He looked really miserable. I got worried; I thought maybe he'd eaten something off the floor. My girlfriend called the vet and luckily he could meet us at the office (by then it was after hours).

Usually it takes me a good ten minutes to bundle up enough to go outside, especially when it's below zero like it was that night. But I wasn't going to take up precious time with my dog so miserable; I was scared for his life. I threw on a jacket and my double hats, leaving gloves, scarf and warm under layers behind, and ran out with him to the car.

I was in pain by the time I reached it. My face, neck and hands felt like they were going to come off, then went numb. By the time we had driven the five minutes to the vet's office, I was shaking and my teeth were chattering. Lesson learned: at least grab the gloves, you moron!

We were glad we took him in- he has a slipped disk, which is super-common in dachshunds. He was in a lot of pain (hence the vomiting), but it wasn't a serious case; he won't even need surgery, he's just on pain pills and stuck in his crate for two weeks. He got a shot that helped him feel much better that night.

On the way home, I was even colder. The temperature had dropped while we were inside the vet's office, I still had not nearly enough on, and I was crying the whole way home from relief. He was going to be okay; I wasn't going to lose my best friend, my little micro-manager, my first dog. The tears froze to my face on the way into the house. I sat by the fire and shivered and cradled my dog in my arms with a cold pack pressed against his back.

It took me two days to recover from the fear and cold shock and relief I had felt so overwhelmingly that night. I was worn out completely for days, and it was made more difficult by all the new things I needed to do to help my dog recover- special feedings, carrying him outside and back in, not letting him walk; the cold pack and then its replacement, the heating pad.

Sure enough, he improved drastically that first 48 hours. He's still healing fine, though he thinks being stuck in his crate is lame. A couple of days ago, the weeks of below zero ended at least temporarily. My dog can actually have time to go to the bathroom without getting too cold even under three sweaters and a windbreaker! Yesterday he got to smell in the yard for the first time since his back got hurt, and his brother, our big dog, has been getting good walks again.

I want it to be March, but that always happens to me in Midwestern January. We Southerners have this weird conception that below zero windchill is completely overrated. No idea where we would get such a crazy idea. Maybe someday we'll live somewhere sane...

Friday, January 14, 2011

My Narcolepsy Themed Art

Or, "Wolfies and Demons". :D

I got a comment from a fellow artist requesting that I post some art, and as I have been halfway planning to do this for some time, I figure, why not now? A lot of my art is quite relevant to this blog, as I'm constantly drawing things about my dreams and daily experiences with Narcolepsy, and those are the pieces I'm posting here. I find expressing the insanity and frustrations of my illness is a great way to cope. Also, the more humorously I express my feelings, the better I come to feel about the entire thing.

One thing that you have to know before you look at my art is that I'm an anthro or "furry" artist. That means I draw very character-driven art, and that my characters are half-human, half-animals. Furry art is pretty different from the mainstream, so I feel I have to explain it a little. Most furry artists have a "fursona," or furry character that represents themselves, and I am no exception. I almost always draw myself as a wolf person or werewolf (hence my blog pseudonym, "Wolfie"). My art is also quite cartoony, as per furry tradition, though not always as I also have quite a bit of classical training.

Also, you will see the signature along the bottom of each piece is blocked out. This is purely protective of my identity as I always put my real name there after scanning in my work. However, I want this blog to remain anonymous and separate from my other online identities for privacy reasons.

So, without further ado!

About the meds:

These two are both about Xyrem, and feeling like a nutcase for being on something so strong. I'm glad that these don't apply anymore, since I'm happy for now with just the Remeron.

About the Demon:

In addition to having a little wolf character who represents me, I also have a frightening demonic character who represents Narcolepsy itself. I heard a song once that had the line "like demons playing movies in my head" or something similar, and though I still can't find the song again, it made a big impression on me. I think that line is the best description I've found of what I experience when my brain throws dream/nightmare/hallucinations at me. And so, this is the demon who plays movies in my head.

Here's one of my more humorous drawings, of the demon kicking me in the butt. XD

In addition to frightening nightmares, I also have some pretty sweet vivid dreams that I like, so in this cg painting I was trying to express the interplay between the good dreams and bad. The white wolf-creature is a personification of the good things about my dreams, and is battling the nightmare-demon.

I've also been making dreamcatchers for a very long time (early attempts at preventative measures, lol), and this one I made with the above painting in mind:

The inner circle is about good dreams, and includes perfect weaving, pretty little trinkets (including a bell to represent sound), and shiny white ribbon. The outer circle is about nightmares, with uneven weaving and black leather, also interwoven with strange little objects. The hanging part incorporates both dirty bones and pristine white fluffy feathers, to show the intertwining of beautiful and disturbing that regularly shows up in my dreams.

Images From Actual Dreams I've Had:

I saw this dreamcatcher hanging in a room (well, my bedroom, actually) that was dripping with pipes covered in moss. When I woke up I jotted down the design, then actually made it to the best of my ability.

I dream about human skeletons a lot, which is unfortunate because I have a silly phobia of them. I don't know if the phobia of skeleton images came before or after dreaming about stumbling across them in my dreams, but weirdly, they seem to be everywhere in my dreamscapes. Whatever it means, I was excited to take an anatomy class a year or two ago and learn how to draw them so that I could a) attempt to overcome my fear and b) actually record some images from dreams that included them.

This piece is a combination of all the hallucinations I could remember having in high school in my old bedroom. It's actually a pretty clear pen drawing, but I like this blurry photograph of it more- it makes it more disturbing. :D And thus gives it more the feel that I wanted.

I also have some really cool beautiful dreams, from which single images have stood out so much that I've felt inspired.

The Baku:

And lastly, I recently discovered this awesome Japanese folklore creature that eats nightmares. I painted him on a piece of wood because I thought he was really cool, and, let's face it, I need all the help I can get, right? XD

The verse is from a song ("Darkness, Darkness" by Solas) and reads:

Darkness, darkness, be my pillow
Take my hand and let me sleep
In the coolness of your shadow
In the silence of your deep

And so, there you are. I have other pieces, but I figure this is long enough as it is. I'm sure there will be more later.