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.

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

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.

TRANSformation

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:

OH!!!
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.

Because You Asked...

Now I think it's time that I give y'all an update on my health, since (you know) that's the purpose of this blog, lol :P. And a lot has changed since my long hiatus began.

So, before we moved in August (or, indeed, even knew we would be moving so soon), I went to a new doctor on the outskirts of Chicago. I picked her, for the most part, because she is female and I have a long history of older, male doctors who I've had pretty serious communication issues with. That stipulation didn't give me a lot of neurologists within two hours to choose from, and she was the only one who seemed to have Narcolepsy on her resume. Indeed, she did seem to listen to me and understood my need to get off of Xyrem. She was a little skeptical that I would be alright without trying stimulants, but agreed I should get off of Xyrem first and see how it went. So she told me I could just stop taking it, and that it would wear off pretty fast, which seemed a little contradictory to what I've heard. We agreed I should stay on Remeron because of my family and personal history of depression and the fact that it should aid my sleep as well.

So I left the appointment pretty happy with what I'd learned, but not terribly attached to this particular neurologist. Which is probably good, now that I live a day's drive from there anyway.

I got off of Xyrem several days after the appointment, and I was really glad that I did. Even now that I'm not really sleeping I don't regret it. My stomach was instantly doing a happy victory dance. I could immediately eat breakfast again, not having to wait until the nausea wore off late in the morning before putting anything in there. I could eat anything (gluten-free/soy-free) that I wanted, whenever I wanted. I could feel hunger again before getting really fuzzy headed or dizzy. In short it is awesome. I can eat again!!!!!!

In two months I went from ten pounds underweight (with my hip bones prominent and ribs visible) to having a little bit of a tummy and the proper curves. I went from a size 2 to a size 6. It's not the numbers that I care about so much though- it's the fact that I feel healthy again. My body feels like it actually has some substance to it. I feel like I'm the right weight now, and it's been years since I felt this good physically. I have to be careful, now, though- I don't want to keep on climbing until it's unhealthy, and that takes some work on my part because increased appetite is a side effect of Remeron that I definitely feel. I'm careful to control how much I eat at once and I limit how much snacking I'm allowed to do between meals. I actually usually just eat one large meal a day because with our healthy, vegetable-rich diet, more than that is too much. I eat a small breakfast, a large lunch, and a snack for dinner. I'm finding that this works really well for me and my girlfriend, too.

So, that's the good news. The bad news is that I'm not sleeping- as you might expect. I used to write down my dreams, but now I have too many to bother. The other day I jerked awake, full of terror at 2 AM, because I heard an excruciatingly loud and frightened scream right next to my ear. I haven't had much in the way of sleep paralysis, which is good if mysterious. Mostly it's just been the dreams. I've had tornado dreams, dog training dreams, beautiful scenery dreams, Harry Potter meets Stargate Atlantis dreams, car crash dreams, even a dream in which I was bicycling along a partially submerged wall through a field of swimming pools. It goes on and on and I wake up to find that it's still 3 something. I go back under, and then it's maybe 4 something. Eventually at like 7 I give up, which has me ready for bed the next night at about 8. I've mostly been sleeping in long naps on the couch in the mid-afternoon with my cat asleep on my stomach, and I'm pretty sure that's the only reason I'm (more or less) conscious the rest of the time.

When we had just moved I was walking the dogs at least once during the day while my fiancee is teaching, and sometimes twice, but as I've been steadily going down in energy level I might be able to do it once if I'm lucky. I'm also pretty frustrated at the fact that I have so much art I want to do but it happens slowly and in short stretches if at all. This is even more maddening because we're so low on money and there isn't anything I can do to contribute directly. The real world is just too demanding for me to keep up. We're doing fine because we have two sets of parents helping us in various ways. It should be better next year when my girlfriend is working full time at the school rather than the current part time (we have reason to hope), but for now we run out of our own funds before the month is out and have no way of saving up for the future. It's hard for me to watch that knowing that I can't earn any extra; I can barely take care of the chores that I enjoy doing and keep the place reasonably clean. I know that my most important job is taking care of the family (two cats, two dogs and the girl) and that even on my worst days I'm a huge help in that regard. I try to remember that and to know that I'm contributing a lot just by existing (our especially needy cat thinks so, too).

But I have to say my symptoms aren't as bad as they used to be in high school before I was diagnosed. I think the Remeron is definitely part of it, but also it's the lack of stress in my life now- the lack of unreasonable expectations. I do what I physically can and for once, it's enough. In fact, it's appreciated greatly by everybody. And to be honest I'm not in any hurry to try adding other meds. My stomach has in some way rejected everything else I've tried, including other antidepressants, Nuvigil, Provigil, and Ritalin. And I like my new-found ability to eat food, thank you very much. :D

My (ex-)Neurologist Is a Jerkface

So, like I said, I got an appointment with a new neurologist for August. My girlfriend, being awesome and helpful, agreed to call my old neurologist's office and tell them, plus find out how we could get my records- we agreed we want our own copy in addition to giving them to the new doctor. So several weeks ago, she did this for me. The receptionist was helpful and wrote it all in my file, but told us that I would have to come in person to pick up the records, which I was halfway expecting. We asked if my mom could come in and get them (since she is, you know, in the right state and we aren't), and we were told that she couldn't since I'm over 18. Several weeks later we were going to fly down to get my car and more of my stuff and to visit anyway, so we figured we could come get the records then.

So the several weeks passed. Then, the night before we were leaving to fly down, I find a message on my phone saying that I need to schedule an appointment with him. I was like, no way in hell, thank you very much. I have good reasons to be moving on. When I told my mom about it she got really annoyed. Apparently family members can pick up medical records if they have a signed note, and she volunteered so I wouldn't have to go to his office again. We were also angry because it seemed that he wasn't going to renew my prescriptions, which I just needed for one more month before my appointment with the new doctor. But once it became clear that I wasn't going to come in to be bullied by him again, he approved my prescriptions after all. Which is a good thing because most of the point in going to the new neurologist is to get off of Xyrem safely. Doctors... can't live with 'em...

Meanwhile, we had a good but exhausting visit to my hometown, and then a very long drive back up here. We've mostly recovered and I'm feeling much more moved in. :) I'm hitting new lows in energy level, but what's new. I just hope the neurologist I'm seeing in August is an improvement over the last one. (Not hard to do.)

Unfortunately Familiar

And the Xyrem Not Really Working Anymore Saga continues.

Four years ago I got diagnosed with Narcolepsy and put on Xyrem, and it fixed pretty much everything for me. It did what it's supposed to and knocked me out every night, and I got more and more awake as the dose was slowly raised. I felt like I got to experience life again for the first time in six years- colors were brighter, I could see in 3D again, my sense of taste was back. It seemed like a miracle, which it was really. And it continued to work for three years, with the occasional dose changes and eventually adding Remeron. But I guess my body is finally saying no. About a year ago I started a steady drop in energy level that resulted in serious life changes for me. And as that's been happening, once-familiar symptoms are putting in an appearance. My dreams are getting steadily more disturbing. I keep waking up in the night more and more and not being able to go back to sleep, despite feeling extremely drugged from the Xyrem. Random hallucinations have been punctuating my dreams; it was happening maybe a few times a year, and now it's multiple times a month. My mind's eye is getting much busier during the day, distracting me with full-fledged dreams when I'm trying to do something else, like form coherent sentences when talking to people. Meanwhile, my stomach is getting more annoyed with the Xyrem again- I've been nauseated and anxious in the mornings, and that used to just happen on higher doses of Xyrem.

Even so, I've been reluctant to get off of it. I know it's still working a little bit and honestly, I'm afraid. I remember what life was like the summer before I was diagnosed. In a lot of ways my living situation is vastly improved- I have really supportive people who I'm living with who want to help me and respect my desire to be distant from doctors. No one is expecting me to be the next amazing careerperson. I'm sleeping next to someone else now, which also helps- waking up in pure terror with no one there was horrible. But on the other hand, I know what my brain can throw at me, and I'm not sure I'm ready. But maybe I never will be, and at least my blog will get more interesting, lol.

So I've decided it's time to get off of Xyrem. My girlfriend's mom helped me out by finding a sleep neurologist in the area and I've got an appointment for August. She and my girlfriend are planning on coming with me as moral support and backup. So we'll see how it goes. At least, once I'm off of it, I'll be quite a bit less worried about paying for it. So in a way, the timing is nice. And my stomach will be doing a victory dance, I'm sure. We'll see how this plays out, and if I have to get on something else. I'm hoping to at least test life without drugs and see if I can do it. It's time to give my stomach a break.

No More Nuvigil

I had planned to keep taking a half pill of Nuvigil every morning until I was running out of samples, and then report to my doctor. Well, that's been my plan three times now, and I keep running into stomach problems and stopping it after a few days. Last time it was nausea that got me. To be fair, it might have gone away after awhile. I know the headaches and the drugged wonkiness would have, so it wasn't those that I was worried about. It was just that after three days I had absolutey no appetite and literally couldn't stomach eating anything.

This time I wasn't nauseated, but the lack of appetite was still there. It came on faster than last time, and I've had stomach cramps, especially at night. Besides that, yesterday was pretty crazy- I was either so awake I was restless and antsy or so sleepy I couldn't keep my eyes open, and the two states would transition pretty suddenly. I'm guessing that would probably have settled out over time though. The past two nights have been similarly nuts- I'd find myself suddenly awake in some random part of the night, then get pulled straight into vivid dreams again, maybe sleep soundly for awhile and then be wide awake for a minute or two again. Which also may have settled out eventually. But it's the lack of appetite that convinced me that Nuvigil isn't a good idea for my stomach. I spent over a year with no appetite on a higher dose of Xyrem and I refuse to deal with that long term again. I have no urge to be back under a hundred pounds because I hate all food and have to force myself to eat. Not healthy.

I'm not sure what my doctor is going to say about this. He keeps suggesting meds to help keep me awake, which of course I need, but every time something gives me a side effect and I stop taking it he gets a little frustrated. He wants me to try things for long enough to make sure the side effect won't go away, or that it won't be worth dealing with to have the benefits of the medication. Which is perfectly reasonable. But I'm kind of through putting the experiment ahead of my present well-being, if that makes sense. In other words, I suppose I would rather feel okay now than go through a lot of feeling crappy in order to feel slightly better- or maybe just the same or worse- later. Who knows, maybe it's just a phase. Or maybe it's my own way of growing up.

Nuvigil Adventures Again

On Monday I went back to my neurologist, which I had been putting off. I wanted a break from having my medications tweaked this way and that, added and subtracted, and the resulting side effects. So I scheduled my appointment for as late as I could while still making it before my next move across the country, this time to be with my girlfriend. My doctor didn't particularly appreciate that, which I really can't blame him for. I come in doing the worst I have in the last year and a half, to announce that I'm leaving and no, can't come back in two weeks for him to mess with my medications some more. He's a good guy and it's obviously frustrating when he can't help me as much as he wants to.

I talked to him about my growing anxiety problem, and he said we could try a different antidepressant instead of Remeron, which isn't really designed to control anxiety, but that would come later. After the appointment I felt really dumb- or rather, really amused with myself, because the anxiety went away as soon as I walked out of there. Apparently I was anxious about the appointment, and thinking of it as an OMG Anxiety Problem!! just made it worse. This happens to me just infrequently enough that I forget to watch for it, lol. I'm going to keep an eye on it, but I suspect I'll have less issues once the move is complete and my quality of life is improved just by being with my girlfriend.

I also talked to my doctor about how exhausted I've been and the fact that I haven't been sleeping very well. I mean, my standards are pretty low, but dreaming for half the night with all this disturbing crap is really a bit much. We talked about Nuvigil again, and I decided to try a different sample pack instead of the one that gave me a gluten reaction. So I got that. He said we could try Adderal if I react to Nuvigil again, but he can't prescribe it across state lines so it would have to wait until the summer. And you know, that's fine with me.

So I started the Nuvigil again yesterday. So far the results are mixed. I had more energy yesterday and I didn't have a gluten reaction. I had a bad headache for awhile- not surprising as that's the main side effect people tend to have. It made me a little bit wonky. Like, I was kind of spaced out in a drugged sort of way. This is also something I tend to do when starting a new medication, so it's not a big deal. It might go away if I give it a chance. I was hopeful by the time I went to sleep.

Last night I was nauseated every time I took Xyrem, but it didn't keep me up. I slept very deeply for most of the night and only dreamed (comparatively) a little in the last third of the night.

I had moved into this dorm/office- complete with both desks and bunkbeds- and I was unsure as to how I'd ended up there in the first place. I had gone to visit someone there, maybe, and had somehow ended up working there and getting my own bunk. I didn't mind so much; it was an interesting place and the other people there were also students at the art institute. Our group's job was to work on this magazine. Everyone was really nice and it seemed fun, but it took me awhile to figure out what I was supposed to be doing. There were clues everywhere, right in front of my face, but I can be pretty slow sometimes. The magazine was called Freism, complete with this fancy logo, and I have no idea what it was about exactly. There were seven people assigned to work on it each year, and I had been hired because the seventh person had stopped showing up. There was a heirarchy, which I eventually figured out because it was posted on the wall, with the rankings as chess pieces. My job was to draw anything they needed for the magazine. I don't think any of us were getting paid, or else it just wasn't important. It seemed to be a volunteer position. The office was pretty cool. The bunkbeds were brightly colored like they were for kids, and there was art everywhere, hanging on walls and piled on the desks, which were arranged near each other so we could socialize while working. It was all very laid back and I didn't do much of anything other than chat with people and make up a new story. The story was about an angel and one of my characters that usually represents me falling in love with him. I don't really remember it now, except that I had wings too. I was telling the people in the office about it while we sat next to the giant wall of windows on one side that looked out on this huge and awesome oak tree. And after that, the second in command guy wanted me to draw something to show what I could do. All I had was this gigantic black marker and he wanted me to draw a machine that would convert moon rocks into gold coins, so I did. It wasn't too bad even though I kept messing up, lol.

I woke up really nauseated. It was after ten before I braved breakfast, which turned out okay because I needed to take my dog to the vet to get a health certificate for our flight and his appointment was at lunchtime. I took Nuvigil again after breakfast. The nausea went away but now my stomach is unhappy. I'm also still feeling really spaced out. I'm a little bit suspicious because it could be brain fog, which is a symptom of a gluten reaction, but I can't be sure yet. Luckily everything is pretty much arranged for our flight, so the ability to think isn't too important for a few days. So basically I'm still on the fence on this one. I need to see what happens tomorrow. If there is a tiny amount of gluten I'll start to react more and more if I keep taking it, so I'll know about it pretty soon. If not I'll have to see if the spaciness goes away, and decide about the headaches. We'll see.

Who the Heck Knows

So tomorrow will be interesting. I'm going back to my neurologist after a couple of months of lack of communication. I'm not sure that he'll be happy to hear about how I'm doing at this point. Mainly I have even less energy than the last time I talked to him, but over the past month I've also been getting steadily more anxious and even a little depressed again. This makes me annoyed (and will probably also annoy my doctor) because I haven't changed anything. Okay, so I tried raising the Xyrem by the smallest possible increment briefly about a month ago when I was desperate for a couple of nights of sleep, but it didn't work- the side effects came back and I lowered it right back down to where it's been for probably the last six months. My Remeron is the same. I never experimented with Ritalin again (like he wanted me to) because it made me depressed that one day I tried it and I don't mess around with depression. My life has improved drastically since the last time I saw him now that I'm not stressed out trying to take four hour classes all the time, plus of course no longer being single and lonely helps. But I'm still more exhausted than ever, dreaming more than I had since I started Xyrem and on top of that have mood issues coming back for no apparent reason. Story of my life.

I'm not sure what he'll want my to do this time, if anything, because I've tried most things at this point. I suppose I could try harder at the stimulants. We'll see. It's just frustrating to be the bearer of bad news.

Dropping

Today I went up to my school and dropped two of my three classes. I was stressed out all morning, dreading it. It was pretty quick and easy, but I still feel really guilty about it for some reason.

It's not that I think I'm not doing the right thing. I already feel a lot less stressed out knowing that I just have one class to keep up with now. It really was too much and there's no doubt about that. It's just hard for me to let go sometimes, especially when I'm doing well in a class despite everything. Plus I'm a little worried I'm going to get crap for it or something, which is silly because I do have the best reasons ever.

I still have to sort out not coming back next quarter, but fortunately it turns out I can do it any time between now and the end of the quarter. That gives me a little bit more time to recover before I tackle the next hurdle.

I have been talking to my parents about it, and they reacted more or less exactly how I predicted, with my mom freaking out and resistant at first, but then getting it after a lot of explanation, and my dad taking it in stride. My parental drama now has to do with how worried they are about the state of my health.

It's not surprising. I mean, they really care about me and sincerely want me to feel better, and I do appreciate that- a lot. But it can be stifling- they want to direct everything, and get more involved than I really want them to be. Part of it probably comes from living with them still. Right now I'm just trying to get myself a little bit of space, and do some recovering before I go back to my neurologist. My parents wanted me to make an appointment as soon as possible, but I think that's rushing things. I want to see what effect, if any, not having classes to get to and get through and stress out about has on my health first. I really think I'll get feeling better in the next couple of weeks without doctor intervention. Also, I need my slightly raised Xyrem dose to settle out so I can tell if it helps or my side effects come back. Basically they want to rush over there and start interrogating my doctor about how we're going to fix me, and I just want to coast along and see how I feel. I think my parents still have this idea of a healthy me that may never actually happen. I have Narcolepsy, and I know that I may always have this interfering with my life. I'm okay with that at this point- I'm beginning to accept the idea of making the most of the situation instead of trying to live as if I don't have a chronic condition. I think my parents aren't quite there yet.

I'm really really grateful for their support and how much they care. But I'm also glad that my girlfriend agrees with me and supports my view of the situation. I might have mentioned that I have the best person in the universe as my girlfriend, so it's thoroughly unfair to compare my parents to her. It does mean that in the future life will most likely involve less freaking out, at least about this stuff, which is something I'm very happy about.

Professional Porch Napping

This morning I actually slept okay for the first time in awhile. I had a cool dream in which I was travelling around inside a vast dormlike place via subway trains and buses, hanging out with two of my close high school friends. It occasionally made itself frustrating, but for the most part was a good dream. And after that I actually slept as far as I could tell when I woke up later than usual, feeling somewhat refreshed (or at least less run over than the rest of the week).

So I figured, since we were going to have a substitute in my class today and therefore it would most likely be shorter than usual, that today wouldn't be so bad. Maybe I could get away with two naps instead of like five, and by the time 7 PM came around I wouldn't be ready to keel over and give up on that staying awake nonsense.

Well, driving to class actually wasn't that hard for once, as I felt like I could pay attention without having to focus every ounce of brainpower on it. Class was fine for about the first half hour, and sleeping during the twenty minute break did help, though I got weird looks from my classmates again. But by the end of the three hour class I was pretty dead. Driving home was difficult and when I had finally pulled up safely into our driveway I just sat in my car for a few minutes, summoning the energy to open the door and get out.

I decided it would be a good idea to let my dog out into the yard for a few minutes and then take a good solid nap. My body decided, however, that that wasn't going to be soon enough. And I ended up falling asleep sitting on the front porch. It was at least ten minutes of nap and it was definitely not planned. I was aware for most of it, so it's not like I was completely out, but that was my first accidental nap in awhile. Though I still think it's kind of funny (add that to my entertaining list of strange places I've taken a nap) it really just highlights the trend I've been experiencing lately. The not so great for any future plans I might have trend.

At this point I'm starting to doubt everything I had thought about before- about how animation is really something that would suit me as a career. It's not that I don't like it or that I'm not good at it, but it requires energy. Which I don't have. And I really don't know what to do about this as my lack of energy seems to be getting alarmingly worse. My doctor is out of medications to add at this point, after the Ritalin made me depressed, and I'm pretty sure he's as frustrated as I am with the situation. We can't increase the Xyrem either; we tried and my side effects came back, and besides that my stomach can't really handle it anyway.

So right now I'm in a pretty angsty state of mind. I keep having to cut back on my daily activities in order to avoid completely flattening myself for days at a time, but every time I think I'm done cutting stuff out of my life I end up having to cancel more. I'm sick to death of being in this house, but leaving it takes more energy than I have to spare most of the time. I keep trying to decide what to do with my life, but everything I want to do takes more energy than I have, so I find myself stuck without plans at all. I just don't know what I'm going to do.

Even More Drugs!!

I haven't been sleeping very well for about a week now. I had three or four mornings in a row where I woke up paralyzed after almost-nightmares, which had not been happening more than once every month or two before. After going back to sleep it's been whacky dreams and then I wake up early, feeling exhausted. Yesterday morning I was feeling okay- I actually slept some after my third dose- but by the afternoon I was more exhausted than I've been since the failed Nuvigil experiment. And this morning I'm way out of it and zoning out.

So I called my doctor. He wants me to try Adderal or Ritalin as a last resort of sorts since I'm really struggling to stay awake at this point, even though they could make me lose weight- which would be a very bad thing for me. But we've both decided that it's worth a try at this point since I can't take Nuvigil. I'm having a really hard time keeping up with my classes, which don't even have that much work.

So it's more drugs for me. I wanted to go pick whichever one he gives me up at the local pharmacy, but apparently you either have to pick them up from the sleep center or have them mailed to your house. I decided I'd rather wait a couple days for it to arrive here than drive for half an hour to pick it up. Yes, I am that tired.

In the meantime I just have to hang in there and try to get everything done. I really like my digital photography class, but it's hard because going around with a camera and snapping pictures from all sorts of angles is really exhausting. I managed to do this last assignment around my house, which was lucky because I only had the camera for a day and had to rest a lot. I'm a little worried that this week I'll have to go farther afield. At least nothing this quarter is really difficult so far.

Kind of Bummed

Well, I called my doctor today and sure enough he wants me to start at a lower dose by cutting the pills in half for the first week. That's fine by me, and hopefully I won't have stomach issues. I totally realized that I've been a little depressed for a couple days ever since I stopped the Nuvigil, and now I'm wondering if that's not a sign of gluten being in it. I guess I'll find out this week if I react to it or if stopping it suddenly was what threw me out of whack. I should probably just call them and find out if it has gluten, but I figure if I try it again instead at least I'll get to be awake for a day or two before it catches up with me. I'm so damned sick of being this tired that I'd rather brave gluten than play it safe.

I'm also kind of bummed because my back up plan of moving to Canada looks like it's not going to work. First of all, you have to prove you can support yourself for at least six months, which I can't even do here- otherwise I would have a job and not have my impending health insurance problem to begin with. But even more troubling is the fact that they do examine your health when you apply for a visa and they won't let you in if you would cost their health insurance system a whole lot of money. Which I'm pretty sure I would. I'm not going to discount the possibility completely, but it isn't looking promising. So it's back to coming up with some other creative solution to my problem.

More Drugs!

Today I went to my neurologist. I explained to him that I'm doing pretty well, but I'm just so damned tired it's hard to do very much. He wants me to try Nuvigil in the mornings and see if it helps. He did say that he has other patients who are sensitive to gluten and that it hasn't bothered any of them yet, which is better than Provigil which sometimes has gluten in it and apparently did bother some of them. He also said it gives people less side effects than Provigil, and his explanation did make sense at the time though I only vaguely remember it now.

I have to say I'm a little wary. Provigil definitely had gluten in it and he tried at first to convince me to take it anyway, which I refused. But I'm pretty desperate for at least a little more energy at this point. He did give me a sample of the Nuvigil so I can try it before getting the prescription filled, so at least the experiment won't cost me anything. I don't know if it'll work anyway though, because my stomach has been pretty annoyed in the mornings lately. At least I'm still off from classes for a few more days, so if I try it tomorrow and it's a disaster at least I'll have time to recover before I need to go to class. Plus I'll need to find out if our insurance covers it if it does actually work.

I'm having a really good week off so far. I've had a lot of time to work on my various projects I have going, which has been great, and I'm enjoying rereading the entire Harry Potter series. My dog has enjoyed the extra attention, too. So here's to hoping the Nuvigil doesn't screw up the rest of my time off. I really want this to work or I wouldn't be taking the chance.

Health Conversations

Last night I went out to dinner and had a really good, honest conversation with my parents about health things. It really needed to happen. My mom surprised me (in a good way) by ackwnowledging from the start that working a standard job may not be something that I can do. My dad asked me what I'm going to do when his insurance stops covering me in a little over a year, and I told him that I have no idea what my options even are. He agreed to help me figure it out once I'm not quite so stressed out and busy, which would really help me and possibly remove a big chunk of worry that I've had in the back of my mind for awhile. We were also talking about moving to Canada, which started out a joke but ended up as a pretty serious discussion. My mom has been fighting our insurance over her various treatments for things and my dad just got finished reading a book about how much better healthcare is in every other industrialized country, so I guess it wasn't really surprising. Just the thought that they would actually consider moving out of the country to help me is amazing. Wow. So now we're back to being on the same page again, which is really nice.

Today we all went to my ENT so that he could look over my CAT scan. He took one look at each page and told me that surgery won't help me, which is a huge relief. My sinuses are normal and my deviated septum isn't actually blocking anything in. The most suprising thing was that he could tell that what I've been catching aren't actually sinus infections. He questioned me on my symptoms again and said that it sounds like a virus, not a bacterial infection, so that's why the antibiotics were just making me worse. He gave me some tips on how to change my sinus rinse routine so that it might help (can you believe I never thought to really clean the thing?) and suggested I use Claritin or Zyrtec, both of which I've taken in the past without issues. I don't need to go back to him, and I can try to fix this with simple things that don't involve surgery. Thank god.

So that turned out much better than I thought it would. I really appreciate the fact that he wasn't going to do a surgery that I didn't need. And I even get to keep my pretty inside-my-head pictures for posterity. Muahahaha.

The Downhill Slide

Lately there's been so much going through my head that it's been difficult to sort out. The basic summary is that, at the moment, I'm feeling really overwhelmed by life. For one thing, the quarter is really gearing up right now and I have three difficult projects on my mind. I have several weeks of classes left, but I'm still really worried about getting it all done. Knowing me I'll manage it despite everything and even get really good grades. But this quarter has been harder than any before it even though I'm taking three classes instead of four.

I'm not sure exactly what's up, but it scares me a little. I'm more tired than I've been in a long time. I keep cutting back- doing less, being really careful about how much energy I use up. It has helped a lot, especially my new strategy for walking my dog. But no matter what I do I still seem to end up struggling with what I have left. I'm staying home so much more, taking more naps, but I'm still not sleeping well. It's gotten difficult to sit through my three hour classes. It wears me out so bad that I worry about driving home. I've been leaning more on caffeine than I would like, but it's the only thing that gets me through some days.

I'm also stressed out about possibly needing surgery on my sinuses. The prospect of having something else to deal with is not appealing. I'm also not sure if it's necessary, and at this point I'm kind of wishing I had picked my own ENT instead of letting my mom set me up with a surgeon. On the other hand, surgery may actually fix my problem instead of just postponing it like all of those horsepill antibiotics I've been taking for years. But I also wonder if it's not my inner-nose anatomy so much as my screwed up immune system to blame. I'm not going back to consult with the ENT until two weeks from Monday, but I'm taking both parents because I want actual brains there asking the relevant questions. I figure between the three of us there'll at least be about a brain and a half actually present.

And along with the stress and the classes and the driving and the doctors, I've been thinking a lot about my future. Saying that I'm worried would be a pretty big understatement. If I can barely do what I'm doing right now, and it's a fight that I have to fight every day tooth and nail to not outright lose, I'm really not sure how I'm going to handle employment. I'm being forced to digest options that do not appeal to me, like being financially dependent on other people for the rest of my life. Like not moving out of my parent's house for multiple more years. As I'm feeling worse right now it's difficult to say whether or not a part-time job is realistic, but even in slightly better times it has been more than I could handle.

Intellectually I know that it's not my fault. I know that I'm doing my best and that's all I can do even when it isn't quite enough. But part of me is ashamed that I had to drop down to three classes instead of four, and it hurts my pride that I need to look realistically at the idea I may not be able to work enough to support myself. I think in our culture these things are really important- the difference between success and failure, and if you aren't making it it means you just aren't working hard enough. But I know that I don't want my life to be the rat race, and that even if I did there's no way I could sustain it. So I'm trying not to let it upset me. Good luck with that, girl.

Needle Scare

Tonight I feel like I've been run over by a freight train. So we'll see how coherent this turns out.

Looking back on it, it wasn't that busy a day. Stressful maybe, but not busy. I didn't do all that much really. But it does go to show how easily I can get screwed by a not so great night's sleep.

The dream started out pretty cool, actually. I was in Japan with my mom, and we went to this shrine where there was a festival going on. We had fun looking at all the nice crafty stuff people were selling, and it looked pretty authentically shrine festival-y except for the absence of lots of sketchy food. I can't really blame my brain for leaving that bit out. We were looking at the jewelry, especially the earrings, and a Japanese woman came up and started talking to me in Japanese, which I managed to keep up with pretty well. She was asking all the typical questions, like how long were we there for, did we come for business or sightseeing, etc etc. The woman talked to my mom in English a little bit though it was difficult for her. Then we parted ways, but apparently we kept seeing the same woman every time we went to the festival (which was three times at least, during the week or two we were there). We did other things around Tokyo but always came back. Then it was our last day there and we talked to the woman for awhile again. And when she left I was sad because she had been really nice and I knew we were about to leave. Then I turned and started looking at books, and ended up picking one up and starting to read it. At that point my dream took a nosedive into extreme creepiness as I read this super-disturbing book that I will spare you the details of, and then I was in the main character's head and things got so scary that I ended up waking up paralyzed, nauseated, staring at my bookshelf and thinking it was someone coming to get me. I slowly realized where I was and it took so much effort to drag my mind away from that horrible dream. I spent awhile fighting to keep my eyelids open. Eventually I gave up and just turned my light on and went back to sleep.

I don't remember dreaming after that, but I woke up earlier than usual and feeling like total crap. I didn't accomplish much this morning. One reason was that I spent most of breakfast having a panic attack, my first one in a long time. I had a pretty good reason though. I had my CT scan today, and was dreading them injecting me with the contrast.

I've mentioned before that I have a pretty bad needle phobia. If you come near me with one, I will cry histerically for awhile. And I was already overloaded from yesterday, when I was at the mall and decided I was going to take the plunge and get my ears pierced. I had decided recently that that would be the first step in any attempt to conquer my needle phobia, since I really like earrings and being able to wear them would be a good reward for being brave and putting up with that same sharp pain that I'm pretty sure is the root of my fear.

Overall I'm glad I did it. It hurt like hell and was really scary, and if my mom hadn't been there I seriously would have fled at the last minute. I'm still not over it though. Besides the pain association, I hate the feeling of having the needle under my skin. And I'm discovering that that same feeling, minus the pain, is what it feels like to have earrings going through my ears. I think feeling that continuously for at least six weeks will be good for me in the long run, because once I'm used to it I may not mind needles as much. But this morning it just added to my growing panic about the scan.

Once the panic attack had run its course I was too exhausted to do much. I talked to friends and then ate lunch, and then it was time to head out.

I got there really early, and then was super nervous and anxious about the needles for the half hour plus that I was sitting in the waiting room. I just wanted to get up and leave. I realized later I really should have brought someone with me. Finally I got called in.

And found out that because I had alerted them to my propensity to be allergic to stuff, they didn't need to inject me with anything. I was actually kind of annoyed, lol, because I had gone through so much. But it was a relief. And it was pretty cool. The machine was massive, and there was stuff inside it spinning around and making wooshing noises. The lady who did my scan was very nice. So it worked out.

Now I have films with cool and creepy pictures of stuff inside my head. You can see bits of my skull and stuff. Awesome!

I spent the rest of my day on the couch, completely worn out. My dad came home and took me to dinner and then grocery shopping. I took a nap as soon as we got back, and I've been on my way out since. I exercised my dog on the treadmill while trying really hard not to nod off while sitting up in a chair. It's not even my bedtime yet and I'm ready to crash.

It Must Be The Shirt

Last night I dreamed about going to my ENT appointment. It was in a (real life) building that I've had appointments in before even though I hadn't been there in several years, and I recognized the lobby in my dream. I was wandering around the gift shop, food and elevators area because I was so early that there was no point in going up to my seventh floor appointment yet. I ended up talking to random people, who invited me to come eat lunch with them, and I agreed because they were nice and I was bored. I wasn't counting on actually eating there because of my ever-present food restrictions, but ended up with a pretty tasty salad that I ate even though I wasn't particularly hungry. I talked a little but mostly listened to their conversation. Eventually most of them left, but a nice older gentleman was also waiting at the restaurant and I ended up explaining narcolepsy to him. After awhile I ran into a friend who I haven't seen (in real life) because she's been travelling a lot, and I was really excited to see her and we went back to my (old) house to chat and exchange artwork. I never did get to that appointment, lol. Eventually that dream morphed into something crazy about me getting a part-time job at an insane technology museum that I mostly don't remember- except that inside it was a volcano. o.O

Today I really did have my ENT appointment. I also had multiple errands to run beforehand, which I managed alright. I was tired before I even left, but that's life. Like in the dream, I got there very early because it's been awhile since I've been to that particularly confusing part of town. I managed to find it and park without mishap, and when I walked out of the elevator I was a little disconcerted by how exactly my dream had remembered this particular building. Like I said, I haven't been there in awhile- several years, even- but the summer I was diagnosed with Narcolepsy two of the doctors involved were in that building. I was there a lot for those couple of months and it obviously made an impression on me.

Also funny was the fact that random people kept striking up conversations with me- in elevators especially. Usually I'm pretty quiet and people don't do that, but I do enjoy it when people are being friendly. It was hilarious because I had dreamed the same thing. Later on that day, after running another errand after the appointment (and having more random people talk to me) I realized that it was probably my shirt. I was dressed pretty nicely today, since I had somewhere to go besides class or walkng my dog, and I think people picked up on that. I've noticed that when I wear my nicest shirt more people talk to me than when I'm wearing something else. The same goes for skirts, actually. No matter what I'm wearing I always smile at people, but when I look especially nice they're more likely to make small talk.

The appointment (which I did get to in real life, lol) went okay. The ENT was very nice and actually knew about Celiac disease, which was a plus. I did have to explain Narcolepsy to him, which I managed without getting too complicated, and he decided to get a CAT scan of my sinuses so we can really see what's going on (which makes sense, because the inside of my nose is anatomically messed up). He's thinking that the way my inner nose is set up is literally trapping mucus so that I've got a constant bacterial infection going on. Which is probably at least part of the problem. He wants to do surgery to correct it if that turns out to be the case, and thinks that once that is fixed I will stop having the constant sinus infection issue.

I'm a little skeptical that the deviated septum is the only problem, since I have two auto-immune diseases, but I'm willing to hear him out. Plus I want to do the CAT scan because they're so incredibly cool. I figure they'll do my whole head and I get to see my skull and eyeballs and brainssssss.... muahahaha!

That said, it wasn't the best appointment because I had a bunch of questions enter and then promptly leave my head, and there were multiple things that I forgot to bring up that were kind of important. So once my CAT scan results come in I'm bringing a parent as backup, lol. Both of my parents have mostly unmushy brains, and actually think of questions and do smart things like bring lists. So I think next time will go much better in the presence-of-mind department- with an addition of a functional mind to the equation. You know, maybe while they're digging around my nose they should just give me a brain transplant.

Dose-Changing Blues

My doctor raised my Xyrem dose almost a month ago because we were hoping I would gain a little more energy and wakefulness. Since then I've been dealing with a lot of bouncing around between extremes with the occasional nightmares and hallucinations on one side and anxiety, nausea and awakeness on the other. I finally feel like it's settled out this past week, but in addition to being more awake I'm back to my old unpleasant side effects of nausea, lack of appetite and anxiety. I decided over the weekend when I was really anxious that I was going to call my doctor today, but then yesterday I felt a lot better and was vascillating.

This morning I woke up really nauseated and anxious and decided to just call and see what my doctor wants me to do. I figured he would raise my Remeron or lower my Xyrem, and he chose the latter. I think it's the right thing to do but I have to admit that I'm a little annoyed. I've spent the last month dealing with extra junk because of the raised dose and part of me feels like everything I went through was in vain if we're just going to change it straight back. But I know that it had to happen this way because there's no way to know how I'm going to do on a dose without trying it, and sometimes it just doesn't work out.

Another reason I'm miffed is that now I get to deal with the dose-changing extra junk again as a lower it. I could technically wait a few days, but I'm tired of being anxious so I'm just going to go ahead with it tonight. Nothing like medication-induced anxiety to get the ball rolling, so to speak.

I'm also kind of relieved, to be honest. I don't want to be on the highest Xyrem dose, particularly. I do worry about its effect on my digestive system, which was more than dysfunctional before I started dumping salt in it three times a night. Also, I can't quite shake the feeling that I was doing better energy-wise before I raised it in the first place. It's difficult to know for sure about these things when your memory is crap and your brain is a little mushy on its good days, so I could be making this up, but I do wonder. And apparently I will find out in the next couple of weeks. If I can remember to wonder about it, that is. Haha.

When I called my doctor's office today to leave a message I forgot my message halfway through reciting it to the secretary, which was hilarious. I apologized and suggested that maybe they were used to that at a neurologist's office, to which she replied that they get that a lot. At the very least this stuff does give me some pretty good stories.