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.
Showing posts with label food. Show all posts
Showing posts with label food. Show all posts
Friday, May 6, 2011
Tuesday, May 3, 2011
Life Explosion
Well, life is settling back down again finally. We were able to borrow J's family's RV for this last month he's working at the high school here, and finally got moved into it and out of the hotel. The entire saga had us moving us and our pets no less than seven times in and out of hotels, our broken rental house (which our landlord kept trying to get fixed) and finally into the RV just a few days ago. Our stuff from the house is packed in boxes ready to be moved back to Wisconsin, where we're going to flee as soon as school ends and J is done teaching.
The RV, while crammed full of stuff and animals, at least doesn't smell like sewage and affect my sensitive immune system. It is also less area to keep clean than the house, though the one thing that was nice about the hotel was the fact that I didn't need to clean anything. This was a good thing because I've been completely flattened from exhaustion. Between the stress, parents poking us constantly and needing to keep everyone updated, the lack of fresh food (thank God for GF frozen dinners or I would have been even more screwed), long hours in the car and keeping everyone healthy and safe through the upheaval, it must have been the longest three weeks in existence. Various things forced me to do too much (like my fiance getting really sick for two days, during which I had to take care of him and even drive to Walmart once) and then it would take even longer than it normally would for me to recover.
In the middle of all of this, we had planned months earlier to go visit J's parents over Easter weekend seven hours away in Wisconsin. My parents were even flying up from Texas, as we wanted our parents to get to know each other better (they had only met once at graduation). The afternoon we were going to leave, we found out that the sewage situation was still not fixed when someone came to disinfect the drained basement and discovered new flooding. So we left, hoping to bring the RV back with us after the weekend was over.
Despite us being exhausted and feeling down on life, the visit with our parents went well and I was relieved at how relaxed my parents were. We had good long talks and caught up, my parents got to meet the horses and our big dog, who they had only seen pictures of before, and reunite with my dachshund, who they adore. We drove them around to show them the area and had dinner a couple of times. It was really good.
I don't know if I mentioned it yet, but my fiance got called in to talk to his boss, the principal, a couple of weeks ago in the middle of all this mess, to find out that he's not getting hired back next year. The principal said a few pretty critical things that had my fiance's confidence in his teaching pretty well shot through for awhile. The most aggravating part is that most of the man's argument is based on something one of the administrators messed up and blamed on J. What really got my fiance, though, was the word "unprofessional". He has to be female for work, but gets paralyzed by anxiety and depression if he dresses too female, so he has to go pretty androgynous and we suspect that's part of the principal's problem. The only thing is that J hasn't come out at work and doesn't plan to, and we have no proof of actual discrimination based on J not looking "female enough". It's just a vague suspicion that I have. At any rate, we just want to get out of that town. After the house problems, all the drama at the school and feeling like we can't go out without seeing lots of people who know J as female, we really just wanted to leave anyway.
For the summer we already had plans to return to J's parents' house to help his mom with taking care of the horses and to allow his parents to go on vacation. We've applied all over the country for English teacher positions, but we know we may not get anything for this next year. If we don't, it'll be a long stay with my in-laws again. I would love that except that the stairs there make my life extremely difficult. Honestly, we aren't sure what to do in J's career next. I hear a lot of transpeople have to switch careers in order to get free of their past life as the wrong gender, and in a career as conservative as public school teaching we aren't sure transitioning would be well-accepted. My man is very sensitive about how people think of him and I worry for him. We've been thinking about how to get his birth certificate changed, but that won't fix his reference letters (which refer to him as female), his social security number, or his college transcripts, which are all things schools look at when considering you. Also, the fact that we don't know what state we're going to be in doesn't help us come up with a clear plan of action as every state seems to have a different process for something as seemingly simple as changing your name. It's very bewildering and we aren't sure where to go from here.
Another thing that has us wondering is whether or not I'm going to have health insurance next year after my 26th birthday, when my dad's company stops being willing to cover me. We had thought, as we are getting married in July and assumed we would be in Iowa next year, that I could be on J's insurance which would at least help. But, if we move to any state where gay marriage isn't recognized or at least converted to a civil union (like Illinois), we aren't married anymore and I potentially lose the ability to have health insurance through my spouse. I've finally decided to try to get on disability because we need the income (my parents are still buying all of our food) as well as insurance, but that can take years and multiple rejections. Transitioning to a straight couple might turn out to be faster.
The good news is that (I think) I should have a pretty strong case. I've never been able to work even part-time, and my mom found a form that allows me to really go into detail about what is difficult for me. As soon as I finish it, I'm going to post it here, as I think it's useful for anyone researching narcolepsy, looking for something to relate to, or for anyone to fill out to use with their application. I started it wondering if I'm really "disabled", but by halfway through I realized that was silly. Hopefully, I can convince the government of this fact.
It's too gorgeous a day to not live in an RV. The first truly warm day we've had in awhile, with the sun shining, and despite everything I'm thankful to be here. I'm thankful to be anywhere.
The RV, while crammed full of stuff and animals, at least doesn't smell like sewage and affect my sensitive immune system. It is also less area to keep clean than the house, though the one thing that was nice about the hotel was the fact that I didn't need to clean anything. This was a good thing because I've been completely flattened from exhaustion. Between the stress, parents poking us constantly and needing to keep everyone updated, the lack of fresh food (thank God for GF frozen dinners or I would have been even more screwed), long hours in the car and keeping everyone healthy and safe through the upheaval, it must have been the longest three weeks in existence. Various things forced me to do too much (like my fiance getting really sick for two days, during which I had to take care of him and even drive to Walmart once) and then it would take even longer than it normally would for me to recover.
In the middle of all of this, we had planned months earlier to go visit J's parents over Easter weekend seven hours away in Wisconsin. My parents were even flying up from Texas, as we wanted our parents to get to know each other better (they had only met once at graduation). The afternoon we were going to leave, we found out that the sewage situation was still not fixed when someone came to disinfect the drained basement and discovered new flooding. So we left, hoping to bring the RV back with us after the weekend was over.
Despite us being exhausted and feeling down on life, the visit with our parents went well and I was relieved at how relaxed my parents were. We had good long talks and caught up, my parents got to meet the horses and our big dog, who they had only seen pictures of before, and reunite with my dachshund, who they adore. We drove them around to show them the area and had dinner a couple of times. It was really good.
I don't know if I mentioned it yet, but my fiance got called in to talk to his boss, the principal, a couple of weeks ago in the middle of all this mess, to find out that he's not getting hired back next year. The principal said a few pretty critical things that had my fiance's confidence in his teaching pretty well shot through for awhile. The most aggravating part is that most of the man's argument is based on something one of the administrators messed up and blamed on J. What really got my fiance, though, was the word "unprofessional". He has to be female for work, but gets paralyzed by anxiety and depression if he dresses too female, so he has to go pretty androgynous and we suspect that's part of the principal's problem. The only thing is that J hasn't come out at work and doesn't plan to, and we have no proof of actual discrimination based on J not looking "female enough". It's just a vague suspicion that I have. At any rate, we just want to get out of that town. After the house problems, all the drama at the school and feeling like we can't go out without seeing lots of people who know J as female, we really just wanted to leave anyway.
For the summer we already had plans to return to J's parents' house to help his mom with taking care of the horses and to allow his parents to go on vacation. We've applied all over the country for English teacher positions, but we know we may not get anything for this next year. If we don't, it'll be a long stay with my in-laws again. I would love that except that the stairs there make my life extremely difficult. Honestly, we aren't sure what to do in J's career next. I hear a lot of transpeople have to switch careers in order to get free of their past life as the wrong gender, and in a career as conservative as public school teaching we aren't sure transitioning would be well-accepted. My man is very sensitive about how people think of him and I worry for him. We've been thinking about how to get his birth certificate changed, but that won't fix his reference letters (which refer to him as female), his social security number, or his college transcripts, which are all things schools look at when considering you. Also, the fact that we don't know what state we're going to be in doesn't help us come up with a clear plan of action as every state seems to have a different process for something as seemingly simple as changing your name. It's very bewildering and we aren't sure where to go from here.
Another thing that has us wondering is whether or not I'm going to have health insurance next year after my 26th birthday, when my dad's company stops being willing to cover me. We had thought, as we are getting married in July and assumed we would be in Iowa next year, that I could be on J's insurance which would at least help. But, if we move to any state where gay marriage isn't recognized or at least converted to a civil union (like Illinois), we aren't married anymore and I potentially lose the ability to have health insurance through my spouse. I've finally decided to try to get on disability because we need the income (my parents are still buying all of our food) as well as insurance, but that can take years and multiple rejections. Transitioning to a straight couple might turn out to be faster.
The good news is that (I think) I should have a pretty strong case. I've never been able to work even part-time, and my mom found a form that allows me to really go into detail about what is difficult for me. As soon as I finish it, I'm going to post it here, as I think it's useful for anyone researching narcolepsy, looking for something to relate to, or for anyone to fill out to use with their application. I started it wondering if I'm really "disabled", but by halfway through I realized that was silly. Hopefully, I can convince the government of this fact.
It's too gorgeous a day to not live in an RV. The first truly warm day we've had in awhile, with the sun shining, and despite everything I'm thankful to be here. I'm thankful to be anywhere.
Friday, April 15, 2011
Somehow Surviving a Week of Total Insanity
Too tired to write... in... sentences...
1) Moved out of house to escape sewage leak and into a Super 8
2) Accomplished above at 10 PM with four animals
3) And with tons of GF frozen food and leftovers
4) Which ran out after 3 days and required me to eat steadily stranger things and rely almost entirely on a loaf of GF bread and lunchmeat from Walmart
5) Checked house every day to drop off laundry and were subjected to the horrible smell increasing until the cleanup people got there finally
6) Watched my fiance come down with horrible flu-like withdrawal symptoms from getting off of his anti-depressant too quickly
7) Nursed fiance back to health over three days while taking care of 4 animals in a hotel, one of which is a dachshund having serious back problems that require extra work
8) Drove to Walmart for emergency supplies and to the house for similar
9) Accomplished the above without crashing into anything despite sleep attacks and being exhausted, not having driven at all in months
10) Moved everyone and everything back into the still slightly off-smelling house to get away from the hotel
11) Had disappointing therapy appointment over the phone
12) Did three loads of laundry and washed giant pile of dishes (using water boiled on the stove because the water heater is still off)
13) Hoping we don't have to move out again while they bleach the basement
14) Called Mom to vent about above and started crying because it's just that insane
15) Now only awake because of blasting Britney Spears
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
Thursday, March 24, 2011
The Gender Therapist Adventure
A couple of entries ago, I explained how my girlfriend discovered the root cause of her depression problems (being trans) and will now be referred to using male pronouns or the initial J. Well, we've talked about it a lot, thought a lot, discussed and considered what to do about it. The whole time, he's been experimenting with wearing male clothing when not at work and so far seems to be doing a lot better. We decided, having read a lot of advice online, that maybe we should look for a gender therapist.
Various trans-oriented resource sites stress the importance of getting a therapist who specifically specializes in gender issues. Apparently, if you get one who doesn't, they're a lot less likely to understand your life issues if you're a transperson. Depression and body issues for transpeople are very different than most therapists are trained to deal with. So after finding this type of advice all over the internet, we decided that if we wanted to work on J's depression with professional help, a gender therapist was the way to go.
So we searched and (unsurprisingly) found that there aren't any in Iowa and the closest one that looked promising is in the Twin Cities, three and a half hours away. And so we made an appointment two weeks ago, J took off work, and we figured that even if it was a disaster or unhelpful, at least we would be near the closest Whole Foods for an afternoon. Yesterday arrived and we threw the dogs in the car in the morning, made sure our cats had extra food, grabbed some Larabars and started driving.
The weather was pretty terrible. It was windy and snow-raining and foggy and the roads were really wet. As we got farther north, the mix turned into snow, which started to show up piled everywhere. Our appointment had been rescheduled for later in the day, 3 PM, and we were glad because it took awhile to get there and the roads in St. Paul were pretty bad. To top it off, we kept getting lost because our maps weren't as helpful as we had hoped. We ate at Whole Foods (sushi!) and rushed through the store to pick up a few things (gluten-free PIE!), running out of time.
We got lost again between Whole Foods and the therapist's office, but we made it there at exactly 3. We rushed upstairs. The office was dark- not a good sign. It was only then when we looked at our messages that we found out that the therapist had called us hours before to tell us she couldn't make it. She was snowed in at her house. We were both pretty frustrated and annoyed. I mean, if we could make it to her office from three hours away and navigate the snowy streets in my dinky little Saturn (which doesn't even have anti-lock brakes), surely she could get there that late in the day from half an hour away.
So we left her a message back and headed back to my car, feeling disappointed. J is probably going to have job interviews that will require him to take days off soon, so we can't really do it again. This therapist won't take appointments at all on the weekend, and we don't really want drive that far again anyway, especially when she already didn't show up once. To console ourselves, we backtracked to a Borders we saw while we were lost, which was plastered with Store Closing sale signs, and went on a cheap book spree. Then the dogs were looking bored, so we took them to a Petsmart and they thought that was pretty interesting. We were feeling like at least the trip hadn't been a total waste.
We had picked up a few fliers in the dark and empty (but mysteriously unlocked) therapist's office. One of them was advertising a trans support group that happened to be meeting on Wednesday evenings. We decided to go, since we had nothing to lose. I mean, our main objective in going to the therapist was to talk to somebody about this. Someone who knew about it, understood, and that was detached from our family, and might know more about it than we do now. We figured we should at least try it out.
After getting lost two more times, getting stuck in the snow and having my narcoleptic self at the wheel while we extracted our car, which resulted in me driving in deep and slushy snow for a few blocks around lots of stuck parked cars, we found the right building. There were only two other people there- apparently a slow night- but they were very friendly and sympathetic. We felt so much better after talking to them for awhile and we got tons of really good information. The best thing about it was just feeling less alone. Being trans and dealing with trans problems is so incredibly isolating. Even when people are supportive, they can't quite understand if they're too far removed from these experiences, and most of the people we know we're a bit afraid to tell because we don't know how they will react. We walked out of there feeling so much better, with lots of fliers and resources and access to an entire community of people in The Cities, and even a binder to try out. My fiance had the biggest smile on his face all the way home.
Night fell as we found our way back to 35. The drive home was long, but we spent the whole way talking and singing and laughing, with our dogs asleep in the back.
Various trans-oriented resource sites stress the importance of getting a therapist who specifically specializes in gender issues. Apparently, if you get one who doesn't, they're a lot less likely to understand your life issues if you're a transperson. Depression and body issues for transpeople are very different than most therapists are trained to deal with. So after finding this type of advice all over the internet, we decided that if we wanted to work on J's depression with professional help, a gender therapist was the way to go.
So we searched and (unsurprisingly) found that there aren't any in Iowa and the closest one that looked promising is in the Twin Cities, three and a half hours away. And so we made an appointment two weeks ago, J took off work, and we figured that even if it was a disaster or unhelpful, at least we would be near the closest Whole Foods for an afternoon. Yesterday arrived and we threw the dogs in the car in the morning, made sure our cats had extra food, grabbed some Larabars and started driving.
The weather was pretty terrible. It was windy and snow-raining and foggy and the roads were really wet. As we got farther north, the mix turned into snow, which started to show up piled everywhere. Our appointment had been rescheduled for later in the day, 3 PM, and we were glad because it took awhile to get there and the roads in St. Paul were pretty bad. To top it off, we kept getting lost because our maps weren't as helpful as we had hoped. We ate at Whole Foods (sushi!) and rushed through the store to pick up a few things (gluten-free PIE!), running out of time.
We got lost again between Whole Foods and the therapist's office, but we made it there at exactly 3. We rushed upstairs. The office was dark- not a good sign. It was only then when we looked at our messages that we found out that the therapist had called us hours before to tell us she couldn't make it. She was snowed in at her house. We were both pretty frustrated and annoyed. I mean, if we could make it to her office from three hours away and navigate the snowy streets in my dinky little Saturn (which doesn't even have anti-lock brakes), surely she could get there that late in the day from half an hour away.
So we left her a message back and headed back to my car, feeling disappointed. J is probably going to have job interviews that will require him to take days off soon, so we can't really do it again. This therapist won't take appointments at all on the weekend, and we don't really want drive that far again anyway, especially when she already didn't show up once. To console ourselves, we backtracked to a Borders we saw while we were lost, which was plastered with Store Closing sale signs, and went on a cheap book spree. Then the dogs were looking bored, so we took them to a Petsmart and they thought that was pretty interesting. We were feeling like at least the trip hadn't been a total waste.
We had picked up a few fliers in the dark and empty (but mysteriously unlocked) therapist's office. One of them was advertising a trans support group that happened to be meeting on Wednesday evenings. We decided to go, since we had nothing to lose. I mean, our main objective in going to the therapist was to talk to somebody about this. Someone who knew about it, understood, and that was detached from our family, and might know more about it than we do now. We figured we should at least try it out.
After getting lost two more times, getting stuck in the snow and having my narcoleptic self at the wheel while we extracted our car, which resulted in me driving in deep and slushy snow for a few blocks around lots of stuck parked cars, we found the right building. There were only two other people there- apparently a slow night- but they were very friendly and sympathetic. We felt so much better after talking to them for awhile and we got tons of really good information. The best thing about it was just feeling less alone. Being trans and dealing with trans problems is so incredibly isolating. Even when people are supportive, they can't quite understand if they're too far removed from these experiences, and most of the people we know we're a bit afraid to tell because we don't know how they will react. We walked out of there feeling so much better, with lots of fliers and resources and access to an entire community of people in The Cities, and even a binder to try out. My fiance had the biggest smile on his face all the way home.
Night fell as we found our way back to 35. The drive home was long, but we spent the whole way talking and singing and laughing, with our dogs asleep in the back.
Friday, March 18, 2011
Bring On the Ice Cream
Okay, so I know there's some pretty weird stuff I've been blogging about lately, related to narcolepsy and not. But this latest suspicion of mine really takes the (GF and soy-free) cake.
So we all grew up knowing two things about ice cream: it's delicious, and it's bad for you. I mean, frozen cream with massive amounts of sugar in it seems to be, according to common sense, bad for you, right? I mean, it's basically sugary fat. Can you get more unhealthy, really? Or so I thought...
For four years or so I was quite underweight, thanks to Xyrem and a complete lack of interest in cooking (a killer when you're on a special diet). My lowest weight was 92 lbs, and though I am a small person, I was around 20 lbs too light. I could feel it. My bones were sticking out and I was cold all the time because I had no fat whatsoever. I felt physically weak. I had a hard time finding small enough bras for awhile, and I was wearing size 0 jeans (which were a little loose). Many people say they'd kill for that, but I felt horrible. I felt so unhealthy. I had no energy, which, when you already have narcolepsy to contend with, basically made life impossible. I felt like one of those skeletons that show up all the time in my dreams, crumpled up on the couch.
Finally I had a falling out with my neurologist because I was sick of being a stick figure, and the Xyrem had mostly stopped getting me sleep anyway. So I stopped taking it and slowly started to recover the weight I needed. I immediately felt better, learned how to cook (what a difference an appetite makes), and started eating a ton of really healthy, homemade food every day. I'm sure the story would have been different if I'd started eating junk food or even GF frozen dinners like I had before, but on all the veggies I gained weight back slowly and flesh started showing up in areas where it was needed. A year later, you couldn't see my hip bones anymore and I actually had curves again. Soon after, I leveled out at around 107 lbs and felt so much healthier and stronger. Even so, I felt cold a lot of the time and like I needed a little bit more meat on my bones. I mean, winter in Iowa really kind of requires extra padding.
Around that time I started noticing how often I was craving cheese. I've always really liked cheese, but I had started putting it on everything. My fiance didn't mind; he loves cheese too, the more the better. Since our diet contains mostly vegetables, fruit and occasionally fish or chicken, I kind of figured I was craving dairy since it's got a lot of protein in it. I didn't worry too much about it and kept piling on the cheese. And then I started craving cheese and ice cream. I hadn't had ice cream in over a year; I tend to avoid sugar products because once you stop eating them, small amounts make you anxious and kind of crazy. But this craving was pretty over the top. So I got a little carton of Haagen-Dazs to see how it went. I like that brand because it's pure ice cream, none of this modified-food-starch-whatever-chemicals nonsense, and you can tell because it tastes insanely good, like real food. Plus a lot of the flavors are gluten-free, and actually gluten-free- no contamination at all. The same goes for soy. Some flavors have it, but only where necessary, and as long as I read to label I haven't had a problem.
So I thought, okay, it's just for a treat this week. But the craving kept up, and suddenly I was gaining weight again. I went from 107 to 113 in a week and the only difference was the ice cream. Alarmed, I stopped buying it. I've heard it's easy to get overweight if you have narcolepsy, so I'm wary. After a week without any in the freezer, I dropped back down to 107, and realized I was suddenly cold all the time again. Okay... was my body telling me that ice cream is good for it? That it needed ice cream to round out my healthy diet? o.O To have enough body heat?
So this turns my idea of health food upside own. I find myself thinking, maybe it isn't that some foods are always bad or always good for you. Maybe being healthy is about paying attention to what your particular body needs, watching how you feel. Maybe it isn't all so clear-cut. The rest of life isn't, so why would food be? Our bodies are amazing, beautifully constructed, and complex. Maybe you can't just rely on other people's advice, even that of the experts. Maybe you have to listen. The more I listen to my body, the more interesting things I discover.
I don't know what's weirder- my body legitimately needing ice cream to maintain the proper weight or the irony of something cold ultimately making me warmer. Now I keep some in the freezer all the time and pay attention to my intuition. If my body says it wants ice cream, I eat some and feel better. If I feel I don't need it then I avoid it. Now that the weather is slowly warming up I've been needing it less. I don't have to think it through. I just have to pay attention.
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.
Tuesday, January 4, 2011
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...
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...
Monday, January 3, 2011
The F. Family Traveling Circus
For Thanksgiving, we had driven seven hours to my girlfriend's parents' house in Wisconsin to visit them and our horses. We brought our dogs and cats with us and it worked out really great. Getting out of Iowa was awesome and the animals were really well-behaved for the drive and the visit and all seemed happy for the adventuring. We had a relaxing four days or whatever it was and were sad to leave. So we figured, why not do the same thing again for Christmas? And since it's much easier to fly down to my relatives in Texas from there than it is from middle of nowhere, Iowa (three hours from the nearest airport with direct flights to our destination), why not visit my parents, too? Our animals could stay in Wisconsin and be cared for by people we trust who had taken care of them before and we'd get to see my family, too.
So it sounded a bit intense, but fun, and let's face it- adventuring outside of our small town for two weeks seemed appealing. Then we found out our mutual best friend and former college roommate, who is at least as much family as the rest of these people, was going to be visiting St. Paul around when we planned to leave for our trip. So naturally we decided to go visit her and her parents for a night or two on the way after they agreed to hosting us and our two cats and two dogs. We had been missing her like crazy.
And so, last Tuesday after my girlfriend got off work, we all piled into the car. It took longer than we had intended to get going because it takes a lot of stuff to sustain two humans on special diets, two cats and two dogs for ridiculous amounts of driving and when they are going to be away from home for almost two weeks straight. We left about an hour later than we had been hoping, but at least it was still light out and we still had a good chance of making it to our first stop for dinner.
Three and a half hours later, we got into St. Paul, tired but not completely exhausted. Having been to this specific house many times each, we just called to double-check the exit off the highway, which was the right one in fact. But after that we passed our turn, then turned the wrong way in an attempt to double back, which landed us on snowy and icy roads going the wrong direction. We dodged a couple of careening vehicles, called our friend back for help getting back to her neighborhood, and spent an hour finding our way there. All the way, our cat was letting us know that he had had enough of this nonsense, and we were stressed out so our dogs were whining. To this rather aggravating chorus, we finally found where we were going, hungry, exhausted and ready to get out of the car.
We had a really good time visiting our friend. The dogs stayed in the laundry room, which we baby-gated off to prevent allergy attacks. They were left to themselves for most of the two nights except for two walks and one bathroom break a day, and of course, being fed. All in all they didn't seem to mind- they were very polite and mostly quiet. My dachshund was a little frustrated by being separated from his humans (he's a clingy little guy), but both dogs seemed to just sleep. The cats were shut into the bedroom we were all sharing and hanging out in to keep them separated from the somewhat antisocial cat of the house, but they did very well also and got plenty of attention. Mostly it was a quiet visit with lots of resting (good for both of us). We caught up, cooked GF lasagna and finished a puzzle.
After our second night it was time to go and make our way to Wisconsin just ahead of a storm. Otherwise we might have stayed longer, it was so nice and relaxing. I took advantage of being in civilization to get three packages of grocery store sushi and that kept me fed for the six hour drive. Even so, we were all exhausted (and bored) by the time we made it to my girlfriend's parents' house. Just sitting in the car tires me out pretty thoroughly (I don't drive at all anymore) and both dogs were whining at the end. Friday (our more vocal cat) was meowing indignantly along with them. It was at that point we decided "Traveling Circus" was a pretty good description of our trip so far.
We spent Christmas there, with a house full of people: six humans, three cats, five dogs, four horses and the miniature donkey. My girl's rather talkative brother and his girlfriend were there and we spent a lot of time with them and the parents. I met more of her family at a Christmas Eve party and (mostly) managed to retain who was related to whom for the evening at least. I also got way more exercise than I'm used to, between walking our dogs around the property and riding horses. I'm still working on just balancing and staying upright on a horse, but for me that's a difficult task, takes lots of concentration, and is therefore draining. I did well and was really proud of myself, but in hindsight it might have been better to save at least some of that energy.
Her family does Christmas a lot more than mine does- there was shopping, gifts (I got lots, which surprised me) and eating lots of meals together. My future mother-in-law is a good cook and mostly eats gluten-free anyway, so she knows how to make safe food and we let her keep us fed. Even though I've been pretty happy to cook lately, it was a nice break to have someone else in charge of it for once. But she doesn't cook quite as many fresh vegetables as we've been eating, or as insanely healthy. That was probably the beginning of us feeling exhausted and sapped of energy, between the food and the constant socializing.
By the day after Christmas and time for our flight south, we were both really tired. Her dad was nice enough to drive us to the airport, almost two hours away, which we were very grateful for. Our flight was delayed an hour but we didn't really mind. Neither of us was able to nap on the three-hour flight, so we were still really tired when we got there. My dad picked us up, so we talked to him all the way back to my parents' house, and then my grandparents were there, so by the time we went to bed that night we were both asleep at the table (me less obviously because I'm way better at faking). We way overate the enchiladas, and the next day there was a party with a bunch of my relatives and a big turkey dinner, so we stayed full of protein-rich, mostly vegetableless and sugar-containing food. My mom had made my two all-time favorite desserts- cheese cake and pumpkin pie- which I was not going to resist. They were delicious, but a far cry from the healthy diet we had been maintaining at home (we hadn't had any but tiny amounts of cane sugar in more than a month before the trip started). During the next two days we saw four of my friends at various meals (at restaurants, so again with the less strict diet), I had a gluten reaction to contaminated fudge, accidentally drank soy-containing tea (someone please explain to me why there needs to be SOY in TEA for Gods' sake), and didn't get a ton of sleep because of the loud city noise outside.
And so, by the time it was approaching New Year's Eve and we were waiting at the airport to fly back up, we both felt like we'd been run over by a steamroller. Of course, that was when storms were delaying everything coming through O'Hare and our flight ended up being delayed for three hours. Eventually we got back after a windy and foggy landing, her dad came and got us, and we collapsed in her parents' guest room at like seven in the evening.
The next day we spent collapsed in a state of no energy. I retrained the dogs (after they had destroyed a few things out of boredom and acquired a couple of other naughty habits from being without my strict rules for several days), convinced the cats that we were not abandoning them forever and ever, and mostly just attempted to recover. Neither of us had it in us to cook, so we ate frozen food, which didn't really help our energy levels. And the next day we packed the car, stuffing it completely with all of our presents, and drove all seven hours back to Iowa.
We chased the sunset for around an hour, and reached our town just as full dark came on. We both caffeinated in order to stay awake long enough to get everyone and everything inside. Then we slept. Yesterday we both woke up sick, our weakened state inviting a cold in. She went to get food because we had nothing in the fridge and we knew that was the key. We cooked three different really healthy vegetable dishes and ate way more than usual, and felt better afterward.
We're still recovering. It was a crazy trip, but it was great to see everyone. The more I'm away from most of my people, the more I realize how important it is to keep in touch with them. Plus, sometimes you have to leave for awhile to understand how nice it is to have your own place somewhere isolated and quiet. Boy are we glad to be back.
So it sounded a bit intense, but fun, and let's face it- adventuring outside of our small town for two weeks seemed appealing. Then we found out our mutual best friend and former college roommate, who is at least as much family as the rest of these people, was going to be visiting St. Paul around when we planned to leave for our trip. So naturally we decided to go visit her and her parents for a night or two on the way after they agreed to hosting us and our two cats and two dogs. We had been missing her like crazy.
And so, last Tuesday after my girlfriend got off work, we all piled into the car. It took longer than we had intended to get going because it takes a lot of stuff to sustain two humans on special diets, two cats and two dogs for ridiculous amounts of driving and when they are going to be away from home for almost two weeks straight. We left about an hour later than we had been hoping, but at least it was still light out and we still had a good chance of making it to our first stop for dinner.
Three and a half hours later, we got into St. Paul, tired but not completely exhausted. Having been to this specific house many times each, we just called to double-check the exit off the highway, which was the right one in fact. But after that we passed our turn, then turned the wrong way in an attempt to double back, which landed us on snowy and icy roads going the wrong direction. We dodged a couple of careening vehicles, called our friend back for help getting back to her neighborhood, and spent an hour finding our way there. All the way, our cat was letting us know that he had had enough of this nonsense, and we were stressed out so our dogs were whining. To this rather aggravating chorus, we finally found where we were going, hungry, exhausted and ready to get out of the car.
We had a really good time visiting our friend. The dogs stayed in the laundry room, which we baby-gated off to prevent allergy attacks. They were left to themselves for most of the two nights except for two walks and one bathroom break a day, and of course, being fed. All in all they didn't seem to mind- they were very polite and mostly quiet. My dachshund was a little frustrated by being separated from his humans (he's a clingy little guy), but both dogs seemed to just sleep. The cats were shut into the bedroom we were all sharing and hanging out in to keep them separated from the somewhat antisocial cat of the house, but they did very well also and got plenty of attention. Mostly it was a quiet visit with lots of resting (good for both of us). We caught up, cooked GF lasagna and finished a puzzle.
After our second night it was time to go and make our way to Wisconsin just ahead of a storm. Otherwise we might have stayed longer, it was so nice and relaxing. I took advantage of being in civilization to get three packages of grocery store sushi and that kept me fed for the six hour drive. Even so, we were all exhausted (and bored) by the time we made it to my girlfriend's parents' house. Just sitting in the car tires me out pretty thoroughly (I don't drive at all anymore) and both dogs were whining at the end. Friday (our more vocal cat) was meowing indignantly along with them. It was at that point we decided "Traveling Circus" was a pretty good description of our trip so far.
We spent Christmas there, with a house full of people: six humans, three cats, five dogs, four horses and the miniature donkey. My girl's rather talkative brother and his girlfriend were there and we spent a lot of time with them and the parents. I met more of her family at a Christmas Eve party and (mostly) managed to retain who was related to whom for the evening at least. I also got way more exercise than I'm used to, between walking our dogs around the property and riding horses. I'm still working on just balancing and staying upright on a horse, but for me that's a difficult task, takes lots of concentration, and is therefore draining. I did well and was really proud of myself, but in hindsight it might have been better to save at least some of that energy.
Her family does Christmas a lot more than mine does- there was shopping, gifts (I got lots, which surprised me) and eating lots of meals together. My future mother-in-law is a good cook and mostly eats gluten-free anyway, so she knows how to make safe food and we let her keep us fed. Even though I've been pretty happy to cook lately, it was a nice break to have someone else in charge of it for once. But she doesn't cook quite as many fresh vegetables as we've been eating, or as insanely healthy. That was probably the beginning of us feeling exhausted and sapped of energy, between the food and the constant socializing.
By the day after Christmas and time for our flight south, we were both really tired. Her dad was nice enough to drive us to the airport, almost two hours away, which we were very grateful for. Our flight was delayed an hour but we didn't really mind. Neither of us was able to nap on the three-hour flight, so we were still really tired when we got there. My dad picked us up, so we talked to him all the way back to my parents' house, and then my grandparents were there, so by the time we went to bed that night we were both asleep at the table (me less obviously because I'm way better at faking). We way overate the enchiladas, and the next day there was a party with a bunch of my relatives and a big turkey dinner, so we stayed full of protein-rich, mostly vegetableless and sugar-containing food. My mom had made my two all-time favorite desserts- cheese cake and pumpkin pie- which I was not going to resist. They were delicious, but a far cry from the healthy diet we had been maintaining at home (we hadn't had any but tiny amounts of cane sugar in more than a month before the trip started). During the next two days we saw four of my friends at various meals (at restaurants, so again with the less strict diet), I had a gluten reaction to contaminated fudge, accidentally drank soy-containing tea (someone please explain to me why there needs to be SOY in TEA for Gods' sake), and didn't get a ton of sleep because of the loud city noise outside.
And so, by the time it was approaching New Year's Eve and we were waiting at the airport to fly back up, we both felt like we'd been run over by a steamroller. Of course, that was when storms were delaying everything coming through O'Hare and our flight ended up being delayed for three hours. Eventually we got back after a windy and foggy landing, her dad came and got us, and we collapsed in her parents' guest room at like seven in the evening.
The next day we spent collapsed in a state of no energy. I retrained the dogs (after they had destroyed a few things out of boredom and acquired a couple of other naughty habits from being without my strict rules for several days), convinced the cats that we were not abandoning them forever and ever, and mostly just attempted to recover. Neither of us had it in us to cook, so we ate frozen food, which didn't really help our energy levels. And the next day we packed the car, stuffing it completely with all of our presents, and drove all seven hours back to Iowa.
We chased the sunset for around an hour, and reached our town just as full dark came on. We both caffeinated in order to stay awake long enough to get everyone and everything inside. Then we slept. Yesterday we both woke up sick, our weakened state inviting a cold in. She went to get food because we had nothing in the fridge and we knew that was the key. We cooked three different really healthy vegetable dishes and ate way more than usual, and felt better afterward.
We're still recovering. It was a crazy trip, but it was great to see everyone. The more I'm away from most of my people, the more I realize how important it is to keep in touch with them. Plus, sometimes you have to leave for awhile to understand how nice it is to have your own place somewhere isolated and quiet. Boy are we glad to be back.
Monday, December 20, 2010
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
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
Friday, December 10, 2010
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
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
Thursday, December 9, 2010
Welcome to the Middle of Nowhere, USA
I may have said when we were living in Wisconsin that we were living in the middle of nowhere. At the time, compared to my hometown of Houston, I was right. There were several sizable towns nearby, but my inlaws' house was in the middle of farm fields on a big slab of land. In Houston, going around the block was the shortest walk I would take with my dog, while in Wisconsin it meant my girlfriend taking the dogs out for hardcore exercise (a distance of over 3 miles, which would take nearly two hours for them to walk). It took quite a bit of driving to get to any form of civilization and there were days when you might see ten cars on the way. In Houston there's traffic getting out of the driveway, and I could walk to three separate shopping centers if I had the energy.
That was all before we moved to Iowa. No offense meant to the state or its people, but it seriously must be one of the least populated states. This place defines "the middle of nowhere". Some things about this are awesome. For example, there are way more small businesses here, run by families rather than huge faceless corporations (with Walmart as the main exception). The local pharmacy isn't a chain store, the grocery store is employee owned, and there are lots of cool little thrift, antique and gift shops around, including a little coop. There's also a cool little main street, like many small Midwestern towns have, with the old architecture and so forth. The downside is that there's a lot you can't get within two hours of here (the nearest city is about that far away). Our big dog is allergic to most grains, and there is literally no grain-free dog food being sold within a hundred miles; we have to order it online. Now that it's winter, there are fewer than ten vegetables at the grocery store, and most of them are usually sad-looking. We're lucky if we can find three that are fresh every time we go and we're starting to get tired of the same ones. Whole Foods? What's Whole Foods?? This also means no sushi for me; I doubt the people here have even tried sushi, and they're all blindingly white anyway, so not exactly about to start a sushi restaurant.
That's another thing; I thought Wisconsin had a lack of racial diversity. My girl had her kids (the high schoolers she's teaching English for) make video projects about themselves at the beginning of the year, and I watched them with her to help her grade them. Seriously, these kids all look the same. They all have exactly the same skin tone and their hair comes in two colors. o.O I was getting them all confused within five minutes. But having grown up in a city where whites are the minority number-wise, it doesn't surprise me that it's difficult to understand such a white town. There's exactly one Asian girl, and she's half. My girlfriend is also finding this a little bit trying at times. She's been teaching To Kill A Mockingbird, and the kids are mostly ignorant about racism and are sometimes actually racist. Most of them have never even met a black person. Luckily we're white ourselves so it isn't something that gets directly in our way.
Though I'm sure we're causing enough chatter among the townsfolk anyway, being lesbians. Like all small towns, everyone knows everyone else, and there seems to be a pretty conservative undercurrent. My girlfriend hears about it more working at the school. She hasn't come out to her kids (though her co-workers do know about us) so they don't hide their homophobic comments around her. Two of the other teachers are also a lesbian couple, though they're older than us, and the kids make all sorts of comments about them. Naturally, she tries to educate them about tolerance, but it's pretty clear that their parents are just as close-minded and are passing it all on to their kids. Fortunately, the principal and several of the other teachers are openly supportive of us and really nice about it, and our sexuality hasn't compromised her job in any way (her boss has said that he hopes she'll stay on next year, and be with them for a long time).
For the most part, we've met a lot of really nice people here. One thing I like about it is that there's a thriving art community. The landscape itself is beautiful no matter the time of year, so it's not surprising that so many painters and ceramicists live in the area. We've gone on several weekend outings to studios and seen some really terrific work, including teapots, stained glass and several varieties of landscape paintings. I've made a couple of friends, and even gotten a drawing lesson from a local painter. It's awesome talking to people who have the same passion as you do for something and can look at your work with fresh eyes.
Right now it's a classic winter landscape outside with the snow building itself up. I'm having a lot less trouble adjusting to the cold weather this year because my body was allowed to adjust gradually throughout the fall. This place is beautiful, and we enjoy having our own place, and getting some income that isn't from parents, though we are still relying on them, too. We have a neat little house that is (more or less) functioning now (that's another story), we have our cats with us and our dogs, we have each other.
That was all before we moved to Iowa. No offense meant to the state or its people, but it seriously must be one of the least populated states. This place defines "the middle of nowhere". Some things about this are awesome. For example, there are way more small businesses here, run by families rather than huge faceless corporations (with Walmart as the main exception). The local pharmacy isn't a chain store, the grocery store is employee owned, and there are lots of cool little thrift, antique and gift shops around, including a little coop. There's also a cool little main street, like many small Midwestern towns have, with the old architecture and so forth. The downside is that there's a lot you can't get within two hours of here (the nearest city is about that far away). Our big dog is allergic to most grains, and there is literally no grain-free dog food being sold within a hundred miles; we have to order it online. Now that it's winter, there are fewer than ten vegetables at the grocery store, and most of them are usually sad-looking. We're lucky if we can find three that are fresh every time we go and we're starting to get tired of the same ones. Whole Foods? What's Whole Foods?? This also means no sushi for me; I doubt the people here have even tried sushi, and they're all blindingly white anyway, so not exactly about to start a sushi restaurant.
That's another thing; I thought Wisconsin had a lack of racial diversity. My girl had her kids (the high schoolers she's teaching English for) make video projects about themselves at the beginning of the year, and I watched them with her to help her grade them. Seriously, these kids all look the same. They all have exactly the same skin tone and their hair comes in two colors. o.O I was getting them all confused within five minutes. But having grown up in a city where whites are the minority number-wise, it doesn't surprise me that it's difficult to understand such a white town. There's exactly one Asian girl, and she's half. My girlfriend is also finding this a little bit trying at times. She's been teaching To Kill A Mockingbird, and the kids are mostly ignorant about racism and are sometimes actually racist. Most of them have never even met a black person. Luckily we're white ourselves so it isn't something that gets directly in our way.
Though I'm sure we're causing enough chatter among the townsfolk anyway, being lesbians. Like all small towns, everyone knows everyone else, and there seems to be a pretty conservative undercurrent. My girlfriend hears about it more working at the school. She hasn't come out to her kids (though her co-workers do know about us) so they don't hide their homophobic comments around her. Two of the other teachers are also a lesbian couple, though they're older than us, and the kids make all sorts of comments about them. Naturally, she tries to educate them about tolerance, but it's pretty clear that their parents are just as close-minded and are passing it all on to their kids. Fortunately, the principal and several of the other teachers are openly supportive of us and really nice about it, and our sexuality hasn't compromised her job in any way (her boss has said that he hopes she'll stay on next year, and be with them for a long time).
For the most part, we've met a lot of really nice people here. One thing I like about it is that there's a thriving art community. The landscape itself is beautiful no matter the time of year, so it's not surprising that so many painters and ceramicists live in the area. We've gone on several weekend outings to studios and seen some really terrific work, including teapots, stained glass and several varieties of landscape paintings. I've made a couple of friends, and even gotten a drawing lesson from a local painter. It's awesome talking to people who have the same passion as you do for something and can look at your work with fresh eyes.
Right now it's a classic winter landscape outside with the snow building itself up. I'm having a lot less trouble adjusting to the cold weather this year because my body was allowed to adjust gradually throughout the fall. This place is beautiful, and we enjoy having our own place, and getting some income that isn't from parents, though we are still relying on them, too. We have a neat little house that is (more or less) functioning now (that's another story), we have our cats with us and our dogs, we have each other.
Thursday, April 8, 2010
A Poetry Phase? You've Got To Be Kidding Me
Apparently I'm going through a poetry writing phase. Of all things to happen to me, this is really, really weird. I'm pretty much used to my brain throwing weird stuff at me at this point, but a poetry phase tops it all. Let's start at the beginning, shall we?
I have a very staunch history of hating poetry, starting in the eighth grade when I was completely traumatized during an entire poetry unit. My English teacher made us analyze and write poetry until I was totally sick of it, and I was terrible at it which didn't help. It was horrible- I wrote so many obviously sucky poems, with no idea how to come up with anything better, and the worst (and now, most amusing) part was our final project. We had to write several poems and write five paragraph essays analyzing them. I have very amusing memories of going over to my best friend's house right before it was due and trying very hard to come up with something that you could concievably write five paragraphs about. What I ended up with was (something like) the following:
I hate homework,
It's not any fun,
I hate homework,
I can't get it done.
And then I proceeded to write five paragraphs (very short ones, mind you), throwing in as many devices from my list as I could possibly pretend were there in an attempt to not fail the unit. And I got a pretty crappy grade, but it was kind of impressive it wasn't any worse and believe me, it wasn't from lack of trying.
Ever since I've had a sort of automatic "UGH!" reaction any time anyone says the word "poetry". I didn't go near it again until my senior year of high school, when I finally had a good English teacher. I was still beyond me, however- I failed multiple essays because I completely missed the point of whatever we were supposed to analyze. So to me, poetry has always been something to avoid at all costs. Not something for me to be writing out of the blue- all the time.
It may have been about a month ago when it started trying to seep out of me. I was writing a note to my girlfriend and thought it would be funny to make up a poem from our notoriously emo black cat's point of view. So I wrote a ridiculous-on-purpose angsty cat poem. The next day I thought it would be funny for our other cat to write something, and ended up writing something from our big dog about our little dog, too. It seemed like a pretty funny joke. But I'd started creating a monster without realizing it yet.
My girlfriend, being the biggest English nerd on the planet, has a bunch of books about writing and how to get started with it. We started reading one and doing the activities as something amusing to do in the evenings to relax. So one night the activity was to write for ten minutes about anything and not be bound by any rules other than the time limit. You were just supposed to follow your stream of thought and see where it would go. My girlfriend ended up with a pretty long and complete short story that, once started in that ten minutes, consumed the rest of her spring break because it was so desperate to get on paper. I ended up with poetry. The first couple sucked a lot- even I could tell that. But then, once I got going, it got pretty cool. It shouldn't surprise anyone that it ended up mostly about narcolepsy and occasionally about horrible creepy things. Go figure.
And I haven't been able to stop since then. At least a couple come out every day, mostly about whatever is going on at the time- our animals, food, or things I have trouble with because I have narcolepsy. I'm still pretty weirded out by the whole poetry thing, but who knows... I might as well go with it.
Here are the ones I have so far that I actually like. Feel free to criticize- I have no idea what's actually good and what actually kind of sucks, though I'm finding I can usually tell when something really sucks. I'll spare y'all those. Oh, and they don't have titles, and they're all one stanza (apparently), so the spaces separate different ones- don't read it as one thing. And lastly, I officially apologize to anyone who hates poetry as much as I (usually) do, lol.
About narcolepsy:
I'm sleepy
Thoughts drifting
On an open-window-breeze
Flowing gently back and forth
A breath of a storm
Something dark lurks, waiting
As my consciousness drifts, helpless
Airy, feathered
The hidden monster
Deep teeth
Ready to spring and consume
To drown
In fear
In dreams
Tail lashing
Forked tongue lashing
Striking without warning
From floating comes sinking
Sucking
Down into depths
Feeling like oceans
Cold clinging
No escape
Words
Come flowing
Tripping, dripping
Dipping into my memory
Searching
For meaning
Hidden
Under rocks
Behind bushes
Inside streams
Among fish
Fishing for words
Encased in ice
In little huts on a lonely lake
In winter
Not my season for words
Cracks
In my head
Thoughts slip through
Unbidden, fall away
Dissolve
Become nothing
Are lost.
Searching,
I cannot recall them.
They are gone.
But perhaps
There will be new thoughts
And that is enough.
Life:
Waiting, impatiently
Aroma wafting my way
I fidget, lick lips
Hungry for trying the latest
Concoction
Sitting, bored, writing
To pass the time
Until it is cool
And tongue is not burned
Mysterious orange sauce
Sleeping cats
Rise and fall
Of fuzzy chest
Fluffy tail
Dark ear
Together a yin yang
A balance
Light and Dark
Male and Female
Entwined in peace
Asleep
In their forms
You can see Love
Other stuff:
Shard of wood burning
Intense blue
So yellow it's white
Edges
Glowing within
Like those eyes
Thunder screaming
Shouting its words
Raining its tears
Choking the sky
The ground, the earth
Nourishing, hunting
Crying
Booming
Crashes against ears
Of all shapes and sizes
Paralyzing
Drowning
Loving
Holding
Rain
So there you have it. Weird poetry from me! And there will probably be more. Be afraid! Be very afraid...
I have a very staunch history of hating poetry, starting in the eighth grade when I was completely traumatized during an entire poetry unit. My English teacher made us analyze and write poetry until I was totally sick of it, and I was terrible at it which didn't help. It was horrible- I wrote so many obviously sucky poems, with no idea how to come up with anything better, and the worst (and now, most amusing) part was our final project. We had to write several poems and write five paragraph essays analyzing them. I have very amusing memories of going over to my best friend's house right before it was due and trying very hard to come up with something that you could concievably write five paragraphs about. What I ended up with was (something like) the following:
I hate homework,
It's not any fun,
I hate homework,
I can't get it done.
And then I proceeded to write five paragraphs (very short ones, mind you), throwing in as many devices from my list as I could possibly pretend were there in an attempt to not fail the unit. And I got a pretty crappy grade, but it was kind of impressive it wasn't any worse and believe me, it wasn't from lack of trying.
Ever since I've had a sort of automatic "UGH!" reaction any time anyone says the word "poetry". I didn't go near it again until my senior year of high school, when I finally had a good English teacher. I was still beyond me, however- I failed multiple essays because I completely missed the point of whatever we were supposed to analyze. So to me, poetry has always been something to avoid at all costs. Not something for me to be writing out of the blue- all the time.
It may have been about a month ago when it started trying to seep out of me. I was writing a note to my girlfriend and thought it would be funny to make up a poem from our notoriously emo black cat's point of view. So I wrote a ridiculous-on-purpose angsty cat poem. The next day I thought it would be funny for our other cat to write something, and ended up writing something from our big dog about our little dog, too. It seemed like a pretty funny joke. But I'd started creating a monster without realizing it yet.
My girlfriend, being the biggest English nerd on the planet, has a bunch of books about writing and how to get started with it. We started reading one and doing the activities as something amusing to do in the evenings to relax. So one night the activity was to write for ten minutes about anything and not be bound by any rules other than the time limit. You were just supposed to follow your stream of thought and see where it would go. My girlfriend ended up with a pretty long and complete short story that, once started in that ten minutes, consumed the rest of her spring break because it was so desperate to get on paper. I ended up with poetry. The first couple sucked a lot- even I could tell that. But then, once I got going, it got pretty cool. It shouldn't surprise anyone that it ended up mostly about narcolepsy and occasionally about horrible creepy things. Go figure.
And I haven't been able to stop since then. At least a couple come out every day, mostly about whatever is going on at the time- our animals, food, or things I have trouble with because I have narcolepsy. I'm still pretty weirded out by the whole poetry thing, but who knows... I might as well go with it.
Here are the ones I have so far that I actually like. Feel free to criticize- I have no idea what's actually good and what actually kind of sucks, though I'm finding I can usually tell when something really sucks. I'll spare y'all those. Oh, and they don't have titles, and they're all one stanza (apparently), so the spaces separate different ones- don't read it as one thing. And lastly, I officially apologize to anyone who hates poetry as much as I (usually) do, lol.
About narcolepsy:
I'm sleepy
Thoughts drifting
On an open-window-breeze
Flowing gently back and forth
A breath of a storm
Something dark lurks, waiting
As my consciousness drifts, helpless
Airy, feathered
The hidden monster
Deep teeth
Ready to spring and consume
To drown
In fear
In dreams
Tail lashing
Forked tongue lashing
Striking without warning
From floating comes sinking
Sucking
Down into depths
Feeling like oceans
Cold clinging
No escape
Words
Come flowing
Tripping, dripping
Dipping into my memory
Searching
For meaning
Hidden
Under rocks
Behind bushes
Inside streams
Among fish
Fishing for words
Encased in ice
In little huts on a lonely lake
In winter
Not my season for words
Cracks
In my head
Thoughts slip through
Unbidden, fall away
Dissolve
Become nothing
Are lost.
Searching,
I cannot recall them.
They are gone.
But perhaps
There will be new thoughts
And that is enough.
Life:
Waiting, impatiently
Aroma wafting my way
I fidget, lick lips
Hungry for trying the latest
Concoction
Sitting, bored, writing
To pass the time
Until it is cool
And tongue is not burned
Mysterious orange sauce
Sleeping cats
Rise and fall
Of fuzzy chest
Fluffy tail
Dark ear
Together a yin yang
A balance
Light and Dark
Male and Female
Entwined in peace
Asleep
In their forms
You can see Love
Other stuff:
Shard of wood burning
Intense blue
So yellow it's white
Edges
Glowing within
Like those eyes
Thunder screaming
Shouting its words
Raining its tears
Choking the sky
The ground, the earth
Nourishing, hunting
Crying
Booming
Crashes against ears
Of all shapes and sizes
Paralyzing
Drowning
Loving
Holding
Rain
So there you have it. Weird poetry from me! And there will probably be more. Be afraid! Be very afraid...
Monday, April 5, 2010
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.
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.
Friday, March 12, 2010
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.
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.
Thursday, January 21, 2010
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.
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.
Friday, January 1, 2010
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.
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.
Wednesday, December 23, 2009
Art College Dorm Friends
More dreams. This time apparently more convincing. o.O
I was just moving in to this house to live with a group of other students from my art college, only they were all people I didn't know. We were exploring the small house, unpacking our things and joking around. Everyone seemed pretty nice. There were at least six of us, pretty much evenly divided between male and female though the numbers changed a little throughout the dream. A couple of people cooked dinner and made it gluten-free for me, which went fine. It was spaghetti and meatballs. We ate it while we watched this really dumb movie and people were making plans to go to another movie after dinner. It was getting late and I wasn't sure I should go, since I was exhausted and getting sleepy. I finished my dinner and looked around at everyone else, seated at two tables in our living room, which had no other furniture. I spotted one of the people who had cooked it. She looked a lot like one of my high school friends, even though she was supposedly a different person. She had seemed really nice so I thought I should get her attention (she was sitting at the other table) so maybe we could talk instead of going to the movie. As I watched, she started falling asleep sitting there, and I was interested to know if she had Narcolepsy too. I finally managed to signal her and so after dinner when everyone left, we ended up sitting in one of the bedrooms, talking. I kept trying to start my explanation of Narcolepsy because I really wanted to know if she had it, but she kept taking the conversation in some other direction every time I had an opportunity. Like, she asked me if I drank and I told her no, I can't because of my medication. But then she completely changed the subject to her stories and characters, which was really cool because we had that in common, so I gave up and figured I'd just end up explaining it all later. We were sitting on the floor, leaning over this sheet of notebook paper on which she had written the names of places in a world she had invented, and I was trying to pronounce them. I was happy because I had a new friend. And then I suddenly found myself in my bed, awake. I was really confused because I had been so positive I had actually been talking to this new friend. It took me a moment to figure out it was a dream.
I was just moving in to this house to live with a group of other students from my art college, only they were all people I didn't know. We were exploring the small house, unpacking our things and joking around. Everyone seemed pretty nice. There were at least six of us, pretty much evenly divided between male and female though the numbers changed a little throughout the dream. A couple of people cooked dinner and made it gluten-free for me, which went fine. It was spaghetti and meatballs. We ate it while we watched this really dumb movie and people were making plans to go to another movie after dinner. It was getting late and I wasn't sure I should go, since I was exhausted and getting sleepy. I finished my dinner and looked around at everyone else, seated at two tables in our living room, which had no other furniture. I spotted one of the people who had cooked it. She looked a lot like one of my high school friends, even though she was supposedly a different person. She had seemed really nice so I thought I should get her attention (she was sitting at the other table) so maybe we could talk instead of going to the movie. As I watched, she started falling asleep sitting there, and I was interested to know if she had Narcolepsy too. I finally managed to signal her and so after dinner when everyone left, we ended up sitting in one of the bedrooms, talking. I kept trying to start my explanation of Narcolepsy because I really wanted to know if she had it, but she kept taking the conversation in some other direction every time I had an opportunity. Like, she asked me if I drank and I told her no, I can't because of my medication. But then she completely changed the subject to her stories and characters, which was really cool because we had that in common, so I gave up and figured I'd just end up explaining it all later. We were sitting on the floor, leaning over this sheet of notebook paper on which she had written the names of places in a world she had invented, and I was trying to pronounce them. I was happy because I had a new friend. And then I suddenly found myself in my bed, awake. I was really confused because I had been so positive I had actually been talking to this new friend. It took me a moment to figure out it was a dream.
Thursday, December 10, 2009
Fort Hotel Dog Drama
Last night I was freaking out about travel and dog drama to my girlfriend, so how my dreams turned out really didn't surprise me.
I was on a trip with my two college roommates (one of them being the girlfriend I'm always gushing over) and our hotel was basically a bunch of forts made out of sheets and clothespins over chairs and tables in this giant mall food court, complete with escalators, food (gluteny poisonous food) and random shopping. It was seriously random. I had woken up late and we were supposed to go on some tour of somewhere, and I was rushing trying to get ready, but I was so exhausted I could hardly move and I couldn't find any clothes besides my pajamas. I asked my non-girlfriend roommate if she had seen my stuff anywhere, but she hadn't, and she was busy sewing a quilt so she couldn't help me. My girlfriend had run off somewhere and I had no idea when she would get back, and I was kind of worried she wouldn't get back in time for us to leave.
Then I was at this really frilly, fancy house in the guest room, and the person I was apparently staying with had two little white yorkies. They were quite well behaved even though they had a lot of energy, and I was trying to get my dog to relax around them. Of course he was completely traumatized and scared and he kept hiding behind the frilly white curtains or under the poofy pink bed. I ended up telling the yorkies to calm down and just sit next to him, and eventually he showed signs of getting over it.
Suddenly I was at this stadium, and the three dogs were on leash. I was trying to get us through all these crowds of people headed for their seats, and I was with this really big extended family with a ton of kids, so we had to move slowly. My dog was done freaking out, and now I was trying to get him to stop yanking the leash around while also keeping the yorkies in check, and trying to hold a conversation with various family members in Spanish. As we walked, we passed a bunch of small but deep pools of very clear water just randomly in holes in the sidewalk. My dog jumped in and started swimming, and I was all excited because he was having a really good time. Eventually we got near our seats and I asked the family to hold the dogs for me while I ran into the bathroom, because I knew I would need to go before whatever we were going to watch started. There was a lot of confusion around the dogs because I didn't remember that much Spanish and we were still sorting it out when I woke up.
I was on a trip with my two college roommates (one of them being the girlfriend I'm always gushing over) and our hotel was basically a bunch of forts made out of sheets and clothespins over chairs and tables in this giant mall food court, complete with escalators, food (gluteny poisonous food) and random shopping. It was seriously random. I had woken up late and we were supposed to go on some tour of somewhere, and I was rushing trying to get ready, but I was so exhausted I could hardly move and I couldn't find any clothes besides my pajamas. I asked my non-girlfriend roommate if she had seen my stuff anywhere, but she hadn't, and she was busy sewing a quilt so she couldn't help me. My girlfriend had run off somewhere and I had no idea when she would get back, and I was kind of worried she wouldn't get back in time for us to leave.
Then I was at this really frilly, fancy house in the guest room, and the person I was apparently staying with had two little white yorkies. They were quite well behaved even though they had a lot of energy, and I was trying to get my dog to relax around them. Of course he was completely traumatized and scared and he kept hiding behind the frilly white curtains or under the poofy pink bed. I ended up telling the yorkies to calm down and just sit next to him, and eventually he showed signs of getting over it.
Suddenly I was at this stadium, and the three dogs were on leash. I was trying to get us through all these crowds of people headed for their seats, and I was with this really big extended family with a ton of kids, so we had to move slowly. My dog was done freaking out, and now I was trying to get him to stop yanking the leash around while also keeping the yorkies in check, and trying to hold a conversation with various family members in Spanish. As we walked, we passed a bunch of small but deep pools of very clear water just randomly in holes in the sidewalk. My dog jumped in and started swimming, and I was all excited because he was having a really good time. Eventually we got near our seats and I asked the family to hold the dogs for me while I ran into the bathroom, because I knew I would need to go before whatever we were going to watch started. There was a lot of confusion around the dogs because I didn't remember that much Spanish and we were still sorting it out when I woke up.
Tuesday, December 8, 2009
Moving Halfway Across the Country Again
Alright, so I've totally been neglecting this blog lately. The main reason is that my life is once again rearranging itself. Definitely in a good way. My girlfriend got home fine, but we both started pining pretty badly the second she had to leave, which led to planning a trip for me to visit her, which then turned into me taking my dog and moving up north for the winter until she finishes getting certified and can move down here. Yes, me moving up north. For the winter. XD
I spent three years of college up in Minnesota, and being a native Texan it made a pretty big impression on me. At first it was pretty frightening, as winter came in November (instead of maybe pretending to show up in January) and the temperature dropped from "chilly" (65) to "freezing" (45), then bypassed "#$%@ing cold" (20) and kept right on dropping until it was hitting those pesky negative numbers that my poor Texan self had never even heard of before. Every one of those three winters had me wondering, around April when you'd think some hint of spring would have shown itself already and instead the ice and snow was barely even thinking of starting to melt, what the hell am I doing here??
It was hard. Having grown up with school canceled if the temperature hit freezing (like once every five years lol), walking to class buried in layer upon layer of clothing and still feeling like my face was going to fall off in the negative degree windchill was not fun. After awhile I did get used to some things: I learned to appreciate snow and layering, and I loved walking outside to see a world worthy of Christmas postcards every day. I started to refer to 50 degrees as "nice", especially in the spring, and there was something amazing in the total silence and stillness in a frozen landscape. That said, a winter in the Midwest still daunts me. I'll be somewhere slightly warmer (in theory) than where I was. I also have the accumulated knowledge of my three years behind me, if I turn out to have retained it, that is. But it's going to be worth it to be with my girlfriend.
It should work out well, because it means we can start our exchange of life skills that will make both of our lives better: she cooks, and I keep her life organized and clean. That sounds like an awesome deal to me, because I'll do anything to not have to cook (which she really enjoys, the crazy person), and she could really use some help with organization, the one thing I'm really good at besides drawing. She constantly loses things, the poor girl. Anyway, I'm pretty psyched. And it'll mean not having to drive anymore, thank god, because she'll do the driving when we need to go somewhere. That by itself is worth moving halfway across the country.
I spent three years of college up in Minnesota, and being a native Texan it made a pretty big impression on me. At first it was pretty frightening, as winter came in November (instead of maybe pretending to show up in January) and the temperature dropped from "chilly" (65) to "freezing" (45), then bypassed "#$%@ing cold" (20) and kept right on dropping until it was hitting those pesky negative numbers that my poor Texan self had never even heard of before. Every one of those three winters had me wondering, around April when you'd think some hint of spring would have shown itself already and instead the ice and snow was barely even thinking of starting to melt, what the hell am I doing here??
It was hard. Having grown up with school canceled if the temperature hit freezing (like once every five years lol), walking to class buried in layer upon layer of clothing and still feeling like my face was going to fall off in the negative degree windchill was not fun. After awhile I did get used to some things: I learned to appreciate snow and layering, and I loved walking outside to see a world worthy of Christmas postcards every day. I started to refer to 50 degrees as "nice", especially in the spring, and there was something amazing in the total silence and stillness in a frozen landscape. That said, a winter in the Midwest still daunts me. I'll be somewhere slightly warmer (in theory) than where I was. I also have the accumulated knowledge of my three years behind me, if I turn out to have retained it, that is. But it's going to be worth it to be with my girlfriend.
It should work out well, because it means we can start our exchange of life skills that will make both of our lives better: she cooks, and I keep her life organized and clean. That sounds like an awesome deal to me, because I'll do anything to not have to cook (which she really enjoys, the crazy person), and she could really use some help with organization, the one thing I'm really good at besides drawing. She constantly loses things, the poor girl. Anyway, I'm pretty psyched. And it'll mean not having to drive anymore, thank god, because she'll do the driving when we need to go somewhere. That by itself is worth moving halfway across the country.
Saturday, November 21, 2009
Good Decisions
Well, my latest attempt to raise my Xyrem dose has (not surprisingly) backfired. I only raised it one little increment on one of the three doses, and it did help me sleep for about a week. But then I got my usual side effects back- anxiety and lack of appetite- and had to lower it again. It's made me uptight and tense, so it was a relief to wake up this morning feeling a little bit back to normal. I'm pretty cheerful today.
I'm so glad that I went ahead and dropped two of my classes. I've had a chance to rest and after a couple of weeks of falling behind I'm actually ahead in my one remaining class. I'm also no longer finding it hard to keep things clean, I have the energy to make myself food again and I haven't missed a single walk with my dog. Since regaining the energy to take care of my daily life was the point of dropping classes, I think it's been worth it.
At the same time, as I get ready to leave the school, I've been a little sad about it. I've had a good time there and learned a lot of very useful information. Part of me does want to finish this degree, but I know it doesn't make sense practically. Last March, I was taking four intense classes- two of them with the hardest drawing instructor in the school- and easily taking the stairs up to the fifth floor almost every day. Yesterday I went to school to sort through some photos and print some things out. I was there for maybe two hours- more like one and a half- and I needed a nap by the end. One of the elevators was broken, so it was a long wait for the other one. I took the stairs up to the fifth floor for the first time in months. It took all that I had- I leaned heavily on the handrail and went very slowly. It really impressed on me how much worse I've gotten, and I have no way of knowing when I'm going to get feeling better. That's why I need to leave the school, because I just don't have the energy anymore.
I wish I could say for sure that I'll be coming back. But the reality is that it could be years before I'm really able to, and by then life might have taken me somewhere else. Or it could be just one quarter that I'm gone, who knows. We'll just have to see.
I'm so glad that I went ahead and dropped two of my classes. I've had a chance to rest and after a couple of weeks of falling behind I'm actually ahead in my one remaining class. I'm also no longer finding it hard to keep things clean, I have the energy to make myself food again and I haven't missed a single walk with my dog. Since regaining the energy to take care of my daily life was the point of dropping classes, I think it's been worth it.
At the same time, as I get ready to leave the school, I've been a little sad about it. I've had a good time there and learned a lot of very useful information. Part of me does want to finish this degree, but I know it doesn't make sense practically. Last March, I was taking four intense classes- two of them with the hardest drawing instructor in the school- and easily taking the stairs up to the fifth floor almost every day. Yesterday I went to school to sort through some photos and print some things out. I was there for maybe two hours- more like one and a half- and I needed a nap by the end. One of the elevators was broken, so it was a long wait for the other one. I took the stairs up to the fifth floor for the first time in months. It took all that I had- I leaned heavily on the handrail and went very slowly. It really impressed on me how much worse I've gotten, and I have no way of knowing when I'm going to get feeling better. That's why I need to leave the school, because I just don't have the energy anymore.
I wish I could say for sure that I'll be coming back. But the reality is that it could be years before I'm really able to, and by then life might have taken me somewhere else. Or it could be just one quarter that I'm gone, who knows. We'll just have to see.
Wednesday, November 11, 2009
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.
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.
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