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).

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 http://www.disabilityfacts.com .

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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:

Driving

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.

3. CARING FOR THE PLACE WHERE YOU LIVE.

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.


D. WORK RELATED ACTIVITIES.

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.

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.

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.

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.

Why Soy Is Not For Me

I'm sure I've written about my soy intolerance before, but having a distinct lack of brain these days, I have no memory of the entry whatsoever. But, as soy is continuously making life irritating (or in my case, freaked out anxious) for me, I figure it's safe to repeat my feelings on the subject.

I got up this morning feeling much better and less gunky. The cold is mostly gone, and because of the lack of headache and the renewed ability to breathe, I actually slept pretty well last night. Aside from multiple dreams about almost drowning, that is, but what's new? So I woke up feeling (for me) refreshed and like I might be able to walk the dogs or clean the floors today- both things that really need to be done. I had a little bit of caffeine in my tea to get me going as usual, a smaller amount since my normal energy level is on its way to being restored.

My girlfriend is also almost recovered from the cold today, so she made breakfast for us both, an experiment with new hot cereal. She put flax and chia seeds in it and a little honey and rice milk. It tasted pretty good, but I didn't eat much of it because there wasn't a lot in the pan, and after the fact I can say I'm really glad.

Since I accidentally became mostly Buddhist (see previous entries), I've been paying lots of attention to my own body and emotional states. I feel like by intentionally watching myself, I notice when I'm being a jerk or neurotic or getting excessively angry, and because I can see it as it's happening I can change course before I do any real damage. This comes in handy when you have a mental or even physical problem in your body because you know right when you run out of energy, or you can see past anxiety and find its cause, and possibly find relief.

Well, as soon as I finished my little bowl of the cereal, my heart sped up and I got tense. My thoughts derailed into a roller coaster of "OMG I HAVE ALL THIS STUFF TO DO AAAAAAAAHHHH!!!" and my shoulders were like a rock. It took me a minute to make the connection, but it was pretty obvious, as this is exactly what always happens the minute I eat even traces of soy. Honestly, I've never met anyone else with this reaction to soy, but it's listed as one of the eight major allergens, so it must do something to a lot of other people. You can imagine how nuts I was going between when soy began to have this effect on me and when I figured out the cause: for most of a year I was constantly freaking out (I got diagnosed with generalized anxiety disorder by a therapist I was seeing) and finding ten other things to blame it on. Anxiety can be caused by so many things, including just life and stress, that it's hard to pin down. And it wears you out so bad, which sucks when you already have a much lower energy level than most of the people around you. At the time, taking Xyrem was also not helping the situation.

As a usually pretty relaxed person, the reaction I have to soy is pretty extreme, so I can usually tell as I'm eating whatever it is. The pain I get from eating gluten happens similarly quickly, which is nice because it means these days I rarely eat a lot of either substance before figuring out I need to stop. But as someone who has to avoid both gluten and soy, it's tough. At least half of the new tasty-looking things I find labeled gluten-free at the grocery store turn out to have soy in them. Before I could cook very well, it was murder. You find delicious-looking cookies only to see that lovely "CONTAINS: SOY" on the back, and anything containing chocolate you can forget.

I have to say, life is much easier since the required allergen labeling came into effect. Wheat and soy both have to be declared really obviously on the label, and it's handy. It used to be I would get something that looked perfectly safe and try it, and have to have one or both types of reaction before knowing it "may contain traces". Since the labels changed I've seen a huge decrease in how often I have gluten or soy reactions, and at least nowadays it's usually my fault for misreading the label.

And, because I know the suspense is killing you, yes, it seems the chia seed came from a "facility that also processes products containing soy", which explains it nicely. Time to go raid the fridge for a better breakfast...

What's This?? A Social Life or Something?

I hung out with/talked to two non-family people this weekend. Human people! o.O Woah... This may seem to some like a low-key, boring weekend if you're used to partying, or are in college. The thing is, ever since I found out what was making me sick and started having to cope with treatment and my special needs (as opposed to simply shoving through pretending to be normal), I've become more and more of a recluse. In high school I was constantly sick to my stomach and automatic-behavioring my way through everything including hanging out with my friends. Then my first year of college I found out about Celiac's. Explaining my special diet to everyone around me sucked. When you tell people who haven't heard of it before and explain the key points to them, they inevitably say one of about five completely moronic things:

1. Oh my gosh, how terrible!! D: Your life is so hard!! (Like I need to hear that from some schmuck who doesn't know me or my life at all...)
2. Did you say you can't eat meat? (Having misheard "wheat" XD)
3. I can't believe you can actually cut all that out of your diet!! I could never do that!!! (Trust me, if gluten caused you physical pain, you wouldn't have a hard time letting it go.)
4. If you eat a cookie, that means you could die??? (XD It's not an allergy like those people in the news who are killed by traces of peanuts.)
5. Oh! I know what you mean!! I have a minor allergy to -insert random food item here- and can only eat five cups of it before my scalp itches minorly!! I usually just ignore it though. :D (Oh yeah- obviously you know what a life-changing diet is like. XD)

After a couple of years of this, I just plain got tired of explaining it. So I just stopped telling people and stuck to friends who already knew and had lived with me through the changes. It didn't help that by that time, I also knew I had Narcolepsy and was on Xyrem, which has its own life changes that go with it. For those years I had to go to bed at a consistent time every night (otherwise my stomach and alertness were completely messed up the next day and sometimes the day after as well). This meant no surprise staying up, which is really tough on someone college-aged when most serious talking and socializing happens at night. It also caused generalized anxiety in me at the higher dose I was on, which, believe me, doesn't help in social situations. Those combined with culture shock after returning to America from Japan kept me completely isolated for my last year of college.

Luckily, returning to my hometown after graduation meant I had old friends who required no explaining nearby. A lower dose of Xyrem also helped me gain somewhat of a social life back, plus getting on a much-needed antidepressant for the first time in my life. I still kept to myself at art classes and in public and avoided explaining either illness as much as I could. Slowly I developed a better strategy than launching into a detailed explanation at a moment's provocation or avoiding the subject completely- instead I compromised by explaining one symptom at a time on a need-to-know basis. For example, when invited to eat with someone I would make it clear I needed to be the one to choose the restaurant or food choice. When falling asleep in class I would explain to other students that I was tired and needed a nap. So in this way as people came to know me, they came to know my needs and quirks, and slowly understood I wasn't normal.

And so nowadays I find it much easier to meet new people and talk to them. It also helps to have my girlfriend's support- I feel more protected, less exposed, in social situations. This weekend we had one of her coworkers over for lunch (we cooked, so there wasn't a problem there) and chatted for about four hours. It was great. We all had pretty good funny stories to share, and I even got to nap for half an hour in the middle without having to kick her out first. :) We also had a long, in-depth conversation on the phone with a chaplain who might officiate our wedding this summer. That was exhausting for me, because he wanted to get to know us and make sure that we really are ready to be married, and so asked pretty in-depth questions. He was really nice, though, and didn't pry for details about my illnesses. I know two new people (with one over the phone rather than in person XD) aren't most people's idea of a social life, but it was a pretty big leap for us since we just moved here and haven't had much opportunity to make local friends. So that is exciting. Maybe by the summer we'll have three friends or something, lol. 8D

Vampire Attack Technology Fair

I've been dreaming a lot lately, but it's been pretty fragmented. Most of the dreams I've had the past couple of weeks could be reduced to one or two lines. But last night was different- back to the usual intense, vivid experience.

I've been reading a fantasy novel about vampires sneaking up on people, so my first dream isn't really a surprise. It started out really fun, actually- I was one of the vampires and I had cool powers and I was running around feeding on people. I could see perfectly in the dark, suddenly appear or disappear and run really fast. I was also pretty high-ranking, so I had a couple other vampires under my command. I could manipulate them any way I wanted. That part was entertaining because I knew I was dreaming, so I knew I wasn't actually hurting anyone. Then I woke up from that dream. I was in the bedroom of my old house- the one I grew up in and where most of my nightmares take place. I sat up in my bed, thinking about the cool dream I just had. Suddenly I realized my leg hurt really, really bad and felt wet. It was literally throbbing with pain. I pulled off my pajama pants and looked. Right in the inside of my thigh was two round holes, bleeding profusely. The blood was intensely vivid red. It hurt so bad and I was terrified. I knew vampires didn't exist and I had only been dreaming, so I concluded that someone had seen me reading a novel about vampires and decided to sneak into my room and stab me while I was asleep (much more plausible, right?). So I started peering out my large windows, trying to make sure no one was out there, waiting for me to go to sleep again. I couldn't see anything, so I tried closing the blinds so they at least wouldn't be able to see me. Of course it wasn't working and I was having a hard time with my vision all of a sudden. I groped around trying to make sure I was still alone in the room, lashing out if I saw movement in case someone was about to grab me. Evidently I was the only one in the house, so I couldn't call for help. I got very scared until my neck froze up and struggling to move it woke me up into reality.

After being held for awhile and another dose of Xyrem, I did get back to sleep. This time I had a much more entertaining and fun dream. I was at some sort of technology fair where people were playing with trampolines that were video games. You would bounce and push different parts of the trampoline with your feet and hands and it would light up in different colors. Some trampolines had maps on them and you could bounce from place to place to score points. Many of my friends and relatives were there, from my dad to high school friends to people I barely knew in college. I spent most of the time playing with the games and being surprisingly not self conscious for being in so large a crowd. After that we went to a cafeteria for lunch and I realized I didn't have any food with me. Luckily I managed to locate quesadillas that happened to be gluten-free and a sandwich I could take the bread off of and just eat the inside. In real life contamination issues probably would have gotten me, but in the dream it turned out fine and I was proud of myself for being so social and adaptable. And I want one of those trampolines lol.

Grocery Store Fiasco

I had a very amusing dream last night. Not amusing in a ha-ha-funny kind of way; more like amusing in an oh-that-just-figures kind of way.

I had just arrived at one of the local grocery stores after being in a class apparently, and I was completely exhausted. I felt like I was going to fall over, so I was holding onto the cart for dear life. As I grabbed the few things I had come to get, my eyelids kept closing and then I would wake up suddenly, still clutching the cart, with no idea how much time had passed or what I had been doing. This was happening more and more and I was beginning to feel panicked, so I took my cart over to check out, figuring I'd better just get home. I put my purchases on the belt and was looking at them. I blinked and examined a box of tea more closely to find that it was clearly labeled "soy tea" (I'm sensitive to gluten and soy and can't eat them in any amount without feeling awful). I shrugged and figured my girlfriend would drink it, but then I noticed that it had "now with meat!!" written on the front (my girlfriend is a vegetarian). So I told the cashier that I didn't want the tea and she took it out for me. I looked back at the things I was buying and suddenly spotted some chicken kabobs that were clearly breaded. I took those out and examined everything else, but kept finding things neither of us could eat. Then after awhile it was time to pay, and the total was $10.45 (cheap haha). I pulled out my wallet but couldn't find my card- I was having a really hard time focusing and every time I dug in there things changed around and I found somewhere else to check, but it wasn't anywhere. So I got out my cash- I had two tens and two ones, and my mind was moving so slowly that I couldn't figure out what to give the cashier. By now I was explaining to her how tired I was and that I was sorry this was taking so long and generally feeling like a total moron. She was pretty nice about it, but I could see that she thought I was really strange. I gave her the two ones, but then realized that wasn't it, so I just handed her all of my cash and she gave me change. Then I ran out of there.

There was a time jump and I was at the vet's office instead of going home. I was still so exhausted I was having trouble walking straight and reading the signs telling me where to go. The place looked way more like a hospital than a vet's office- it was huge. Eventually I found where my girlfriend was with our dachshund. The vet was saying they needed to do an x-ray of his liver, but apparently this involved poking a scope around inside it to feel the lump that was next to it better. It literally made no sense and I was just really worried about my dog. I woke up before anything else happened and grossed out my girlfriend with the meat-and-soy tea thing, hahaha.

Hitting Pause

Well, I know I said I was going to keep taking Nuvigil, but I couldn't bring myself to take it yesterday morning. For one thing, I was so nauseated that I wasn't sure it would stay down. For another, I'd been having steadily worsening stomach cramps since I started it and therefore no appetite, which is not something I enjoy. But let's face it, it was the cookies that were the last straw. It was my birthday and my mom had made cookies for me (gluten and soy-free, of course, but still quite tasty), and I knew I would have no urge to eat even one if I took Nuvigil. And so I didn't, and sure enough I was getting hungry again by the middle of the day. I got to eat two cookies and so I think it was worth it.

That's not to say that I'm giving up on Nuvigil just yet. Someone left me a very helpful comment on my last entry, saying that at least two of the problems it was causing me went away for her after awhile. Which is very encouraging. I was definitely beginning to feel sleepy again even a couple of hours after not taking Nuvigil, and it's a strange thing: you don't realize how easy life is without the constant urge to sleep until it is gone, but then it's so easy to take for granted.

So I'm going to take my samples with me tomorrow and most likely try again soon. Just not on my birthday, or before having to get up early to travel.

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.

Forest Exploring Ceremony

I had the coolest dream last night. It was set at my grandparents' house- I was there with two of my cousins and we were younger- maybe 13 or 14. The backyard was this vast forest that was dark and dense and generally awesome. It was filled with hundreds of twisty, fantastical trees that looked like they belonged in Disney's Tarzan. It was cool and wet and the forest floor was mostly mud and moss.

I was inside, getting ready for an expedition into the forest. My mission was to hunt for these glowing rocks and when I found one, to leave a token of some kind there. You could see the glow from a certain distance, so it was going to take a lot of walking. The whole thing was some sort of coming of age ceremony, and I had an elaborate costume made out of sticks, leaves and mud. I went into the kitchen (which actually looked like the kitchen at my old house) and was searching around for provisions to take with me. My expedition was going to take me all day and I needed to have enough food. I found a box of gluten-free granola bars in a cabinet and thought that would be perfect. Then I found an instant breakfast sandwich wrapped in foil- the box said it was self-cooking, you just put the foil in the sun and it would be ready to eat. That sounds perfect, I thought. I packed that in my small backpack. Just then, my grandmother called me and my cousins into another room. I don't remember what it was exactly but one of my cousins had done something against the rules. I was exasperated because I was ready to leave and go on my fun adventure and I didn't want such a pointless distraction.

I feel like there were a couple more delays before I actually got out there, but I had just started to explore (now with a couple of other cousins) when I woke up.

Well, at least the extra Xyrem is improving my dreams, even if I'm still not getting enough deep sleep.

Old House Exploration Sleepover

Yesterday I got fed up with not sleeping very well and raised my first dose of Xyrem slightly, hoping that even if my stomach rebelled I would at least get more sleep for a few days. I did sleep better and had a couple really interesting dreams.

It started out that it was dark outside and I decided to take my dog out into the yard to use the bathroom before going to bed. I put his leash on for some reason and opened the door, and found myself in this fanastical Japanese garden. It was really cool- it had a curved wooden plank bridge over this little stream that had big waves in it, and there was a lot of wild-looking plants everywhere. I crossed the bridge and it was suddenly the middle of the afternoon, and I realized I was actually in the backyard of my old house. It was how I remembered it being as a child, before we did any landscaping, and everything was exactly how it was at that time. I ran around exploring it and just really happy to be back there.

Then I went inside the house and was exploring in there, and it kept changing into different dream variations on that house- everything from how it was laid out last week in my dream with the huge computers to some variations on it I hadn't dreamed about in years. I found some really neat stuff in my room, though I don't remember the specifics now. As I walked into the living room I instead found myself in this mall. Apparently my parents had started a mall out of our living room and as business grew they had built on to the front of the house. It was pretty crowded and they were selling some pretty random things. It was a bunch of tables loaded with piles of boxes of stuff for sale, a lot of it candy or little knickknacks. I spotted some stairs and started going up to see what was above.

There turned out to be floors and floors on this building, which had turned into an adobe style thing- all the walls were smooth and brown. Every so often the stairs would end in another room of merchandise, and in one of them was a pile of candy bars that were labeled "gluten" in large letters, which I thought was hilarious at the time. I kept running into food I couldn't eat while I was exploring, but I didn't really mind because I having fun seeing what all was there.

After that dream I had another one in which I started out in a class my best friend was teaching, and I don't remember much about it except that it somehow turned into a sleepover with my high school friends on a boat where I was taking pictures for my photography class with the fancy camera. I was trying to get nice portraits of people but it was like 3 AM and I was really tired.

Overall I think it's an improvement as I'm feeling better rested this morning. It was also nice having a night without frustration or disturbing aspects to my dreams.

Festive Music

Halloween has always been my favorite holiday. Something about getting to dress up like an animal and having it be not weird, most likely. It's been several years since my last trick-or-treating expedition- I eventually admitted to having grown out of it, and when you can't eat the candy anymore (because there's soy or gluten in pretty much all of it) it kind of loses its purpose.

The other side of Halloween- the horror film, blood and gore, scary music, dead rotting people side- has never been something I've enjoyed. I think it has to do with the fact that these things tend to show up in my dreams, which are creepy enough to begin with without any encouragement, thanks. I could write horror films by simply recording my nightmares back before Xyrem. Also, being afraid has never been something I enjoy, even though I know people who actually like it. The weirdos.

All this week I've been watching tv- with all the horror movie previews- and I've ended up coming across the usual stupid fake skeletons in people's yards a lot. At the same time I've been sleeping steadily worse every night this week. So of course last night there were creepy rotting people all the heck over my dreams, and I kept brushing up against them on accident and feeling them- at one point I was swimming in an inky black cave that was completely underwater, and they were all over the floor, and there was a current in there that kept me from easily swimming out. It was a tiny part of a whole lot of complete nonsense that lasted all night, and besides that mostly wasn't creepy. But I woke up dead tired because I had spent all night in REMland instead of getting actual rest. I didn't dare try to sleep in because I knew it would just be more crazy dreams, so I ended up taking a nap right after breakfast instead. It took caffeine to get me through my class okay.

So I get to my class in the afternoon. It's Introduction to Audio, so it's basically about music. So of course our instructor thinks it would be really awesome to play us some creepy music so we can talk about what makes it creepy.

As soon as he announced this I started to tense up. The last time I got talked into watching a horror movie it was the music that really kicked my ass. I was creeped out for months after that. So even without the visual I knew I was pretty much screwed. Still, it didn't occur to me to just leave. I can be stubborn about these things in kind of a bad way.

From the first note of squealy, screechy music I was totally freaked out. And as I was expecting, even after it was turned off, it kept playing in my head. On the way home I blasted bad pop music, but when I got home and turned off the car it was back, screeching away in my brain where I couldn't escape from it. It took lots of happy music and watching Kung Fu Panda to finally get it out of there. So I went upstairs, feeling the inner peace and totally doing fine again.

I'm sitting next to the tv (with it off) eating dinner when my dad comes home and sits down. He turns on the tv, and there's the music again, in a stupid preview for yet another new horror flick. I ask him to mute it. He doesn't hear me. I ask him again. I finally yelled, and he heard me and muted it, looking like I was totally weird for being that insistent. And then he ends up watching this spoof horror movie- probably one of the Scary Movies- and it has the same damn music. I was so out of there. I grabbed my dog and ran for it. When I got downstairs I was shaking.

I decided I needed out of the house. So I got my dog leashed up and we went for a walk. As soon as we got outside I felt better. It's a cool, clear evening, and the moon is beautiful tonight. Walking down the street, looking up at it, I remembered why I like Halloween so much. There's nothing quite like walking around after dark under such a nice moon.

Flying Solo

So today was my first day with no parents around. I'd like to say that it went well... except that it didn't.

Well, okay, so I didn't crash the car yet or anything. I still have all of my limbs intact even if they tend to have a mind of their own. The house is also, in fact, not burned down. So far so good?

I had a short class today, and I planned on going to the grocery store because- and this is a pretty good reason- I was literally out of food. And I can't exactly head for the Taco Bell, haha. So I decided yesterday that I would just go after my class.

After class I wasn't too tired because of a couple of strategic naps. So far so good, I thought as I drove out of the parking garage. But that's pretty much where that thought ended. First off, it started raining pretty hard. And then I managed to turn too early and had to backtrack. When I did get to the grocery store it was pouring and it was busy so I couldn't even park nearer the door. I got to the line with my food and realized I had forgotten something, so I ran down an aisle to get it. Big mistake. The running was the last straw. When I got back to the cashier I was completely drained. I didn't even run very far or fast, but it was still too much. The guy tried to make conversation while he was checking me out, but I just brushed him off and leaned on the counter and tried to muster the energy to get out to my car.

Of course while I was in there it had started raining even harder. I got soaked loading up my groceries. I sat down in the driver's seat and shut my eyes for a minute. But I knew I had groceries and even though it was raining it was hot, so I had to get everything home.

When I pulled up in my driveway I found that my dad had left his car in the garage, meaning I would have to unload everything in the rain. It was coming down harder than ever now that I really needed it to stop. I got wet and so did everything else, and my car alarm kept going off because it thought I had accidentally left the trunk open when actually I just had to carry each bag one at a time with both hands just to lift it at all. I pulled the bags into the house and shut the door. I leaned against the wall to catch my breath.

One of the things I really hate about this house is the fact that the kitchen is upstairs. I hate stairs. I dragged my three bags over to the stairwell and looked up.

I seriously felt like I was in The Lord of the Rings, during that part in Fellowship where Frodo is looking down the road and they use that really creepy camera thing where it's backing up and focusing at the same time, and the path looks really ominous. I looked up those stairs and wondered what I had been thinking, doing my grocery trip with no one to help me. Between the driving and class and shopping and driving... I wasn't sure if I had it in me to carry them that one last stage.

I ended up doing it both hands, one bag and a couple steps at a time. I'm going to pay for this tomorrow, but I was damned if I was going to let anything melt after getting it through all that rain. Then I spent the rest of the day on the couch recovering. I'll still be feeling this tomorrow, but at least I now have food.

Fancy World Traveller

For most of this week my dreams have been so mixed up and nonsensical that I haven't been able to make enough sense out of them to record them. But last night was back to clear and interesting.

It started out in Japan where I was visiting my host mom and we decided to go shopping. We went to this store that had a variety of things. There was a lot of jewelry and clothing but also lots of kid's toys. At one point I was looking at these rainbow-colored puzzle pieces that you had to try and make a cube out of, only I couldn't get them to fit together and it was really difficult- they would change shape as I picked them up. I looked around at the earrings and the dinosaur toys and then at the clothes a little bit, and was excited about the fact that the blouses were small enough to actually fit me (I have trouble finding clothes that fit me here in the States because of how small I am, and in real life Japan it really was easier). I wasn't sure if there was a dressing room though, so I settled on a couple of dinosaurs and a necklace or something.

After that it turned out I needed to get dressed up for something. Now I was in a mall, but my closet was in this room off to the side where I could change. I had some really crazy clothes and was having trouble putting together anything that matched. I was getting pretty frustrated because I would put on one thing and it would turn into something completely different as I put it on, so that I would end up not matching again. I somehow didn't catch onto this for awhile though and just kept at it. Finally someone came in to help me (whoever I was with; maybe my mom?) and she had found someone to do my hair and make up. And after that I totally looked like a movie star, which I thought was pretty weird and not me but I figured it was just for this big event I was going to.

I actually don't remember what happened next, just that after awhile I ended up in an icy field with my parents, crossing it carefully because there were those concrete blocks they put at the end of parking spaces lying everywhere, only instead of concrete they were made of ice. It turned out to be a memorial of a war with the blocks symbolizing something. After awhile it turned out we had crossed over the sea into China and were right on the edge of Shanghai.

It was pretty cool because it looked like a Chinese watercolor painting of a rural landscape. My parents explained that they had wanted to show me Shanghai because they really liked going there on their trip over the summer (which is true). We went down a hill into an alley that looked like it belonged in Europe with medieval stone buildings really close together. It was after dark and I was kind of scared, but my mom started talking to the locals in Chinese (which she really is learning, though she was way more advanced in the dream) and sorted out where we should go. I was a little worried because I suddenly realized I didn't have any of my medication with me, and I didn't know where I would find something that I could eat. At the same time I was glad to be there though, because I felt that if it had been up to me I would have been too cautious about these things to visit China in the first place. And I was really glad to be there and learn something.

Gothic Room Creepy Mirror Faces

It had been so long since the last time I had a gluten reaction (I'm ridiculously careful with my food) I forgot that gluten can actually give me nightmares despite the Xyrem. It wasn't so bad compared to my pre-Xyrem dreams but it was still pretty creepy.

In my dream I woke up in my current room to take my next dose of Xyrem, only it didn't look exactly like my real bedroom. There was a giant pile of stuffed animals on one whole wall and they were all lined up in a way that they were staring straight at me. None of them looked friendly. I got up to go to the bathroom, but it was really hard to keep my eyes open because I was sleepy and it was hard to see where I was going. When I got in the bathroom and looked in the mirror, my face looked really creepy and skull-like. I started to make different faces and it all just looked really scary- like in the mirror my grin would get unnaturally large until it was coming off of my face, and various parts of my face would stretch around unnaturally. I could feel it too- it didn't hurt but I could literally feel my mouth stretching out and the muscles migrating around.

After that I got sidetracked doing something else. I think I was trying to get dressed up for something, only I couldn't find what I was looking for. My room was really gothic. There were skulls on everything and there were a lot of little silver statues. I kept looking at the stuffed animals and their eyes would follow me as I moved around the room. I think there was some sort of plot for the next part of the dream involving my mom or something, but I don't remember. I just remember towards the end of the dream I was back in the bathroom making creepy faces again and scaring myself so that I started to get paralyzed. It never really took hold though, and I woke up suddenly and left the light on after that.

Today I feel like someone stabbed the inside of my entire digestive tract over and over. So I'm going to call my neurologist and tell him that Nuvigil is a no.

A Bad Experiment

Well, at least now we know that Nuvigil is officially not gluten free.

For most of the day I was awake, which made my life much easier. Unfortunately I was also having a gluten reaction. In the morning right after taking it I was so brain fogged that I couldn't think. It's hard to describe because it isn't the same brain haziness that I have anyway with Narcolepsy. It's less about losing track of things and more about just not having any thoughts in my head at all. And if I have to make a decision I can do it, but it takes a really long time to get any thoughts into my head. So that was fun this morning. I spent a good solid ten minutes trying to decide what I was going to eat for lunch when it was really kind of obvious.

After that came the stomach cramps. Ouch. That lasted most of the afternoon. After lunch my brain was mostly working again, which was good because I had a class. It looks like it'll be really good, actually, but it was long- it went all the way until 5. I ended up driving home in traffic, awake but dead tired. If I thought I was tired before the Nuvigil, I had just forgotten what a gluten reaction is like on top of the Narcolepsy. It completely floored me. I came home and headed straight for the couch and it kind of messed up and switched around my evening routine.

So my digestive system officially says no. Which is unfortunate because my brain wants to say yes. Halfing the pills took away the hyperness and heart rate issues and being awake was awesome. If my stomach could handle it it could open up a lot of possibilities for me.

My latest idea is to look into the latest Celiac disease treatment and see when it comes out- it's a pill that theoretically allows you to eat gluten without a reaction. Last I heard it was in clinical trials. Personally I'm not putting any money on the makers of Nuvigil deciding to suddenly care and change the fillers, though I guess I'll keep writing to them anyway. And in the meantime, it's back to the old daily dragging myself through life.

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.