Well, our wedding went great, lots of people showed up and it was generally awesome. (Apparently the disasters stayed in the planning and once we got to Omaha, it was all fine.) Then, for our honeymoon we drove down to visit my hometown and then back up, slowly. All in all, it was a good break from real life, except for all the people thinking my husband is my wife because we hadn't told them about the whole trans thing yet. But we survived and even had a good time, talking or just being for all those hours of driving.
Some time on the last day, as we were heading up Illinois for five hours, we started tallying up everything we have to change our names on. The list ended up somewhat overwhelming. I had changed my last name and J had changed his first and middle via the marriage, and between us, all sorts of IDs, insurance things, and bank accounts were now outdated. So, as soon as we got home and minorly settled (as in, boxes piled everywhere in the downstairs of my in-laws' house instead of in the car and basement) we set out to start the process.
Our first stop was the DMV to update J's drivers' license and get me a non-driver ID to replace mine. The first person we managed to confuse was the information desk guy. We explained how we had changed our names due to marriage and needed new licenses in this state since we had moved. He was like, sure, and then we handed him our shiny marriage certificate. He blinked at it multiple times to make sure he was reading it right. Then he looked at J and back down at the proof that my husband has changed his name from a very feminine name to a male name. He asked us again just to make sure, then shrugged it off and got it set up.
Then desk guy explained that I need proof of residency in the state to get my new license, and I asked if it was the same for a non-driver ID. He said it was and then said quickly, "...but then you won't be able to drive!" And I was like, "yeah." And he was like, "You know you can't keep the license from the previous state if you do that, and you'll give up the right to drive." He went from skeptical to really confused when I said lightly, "yeah, I know." I didn't explain to him that I hadn't driven in two years and if I did, that it would be really dangerous and not worth the energy required anyhow. I mean, I look perfectly normal and I'm only 25.
So with that desk guy, we started our official Body Count, aka how many government officials we had confused so far: Me: 1, J: 1. We decided to keep score because really, how is it not hilarious? Plus, we're interested in who can raise the most eyebrows: the 25-year-old disabled girl or the guy getting a sex change. Who will win??
Next it was getting J's new photo, which I sadly missed because I was in the bathroom, but apparently it was really funny. The guy doing the photos for people was this really outgoing, chatty fellow who looked like somebody's friendly grandfather. Apparently he was super awkward trying to figure out how to address J, who hasn't yet started testosterone (next week!) and has a feminine-looking face, but dresses, talks and acts very male. So I missed that, and didn't get a shot at confusing that guy since I have to wait on my ID until I bring in proof of my address. That made the Body Count J: 2.
We sat and waited until we got called to finish the process, which was done by a strict-sounding and annoyed woman who decided to be suspicious at first rather than confused. She triple-checked that J wanted his whole name changed and was pretty short with us, but it was most likely just the long line. Then we were just waiting on it to get printed out, now with the score as J: 3, Me: 1. Finally, photo dude waves us over to avoid calling out J's new name which obviously weirds him out, lol. Sniggering, we left.
Our other stop of the day was the closest social security office. This time, we only spoke to one person who did both of ours. He was younger than the DMV people, or maybe just less easily ruffled, because when he saw J's old and new names, he only paused for slightly longer than normal in between sentences. We decided that didn't count, though, because it didn't even make him awkward. I got my second score of the day, however, when he asked me for my social security number and it took me ten minutes of close-eyed concentration to come up with this number I know very well and use pretty often. It probably didn't help that I was swaying off balance and speaking really vaguely since I had forgotten to bring a snack and was looking and feeling light-headed. He looked really worried about me and surprised, even after I came up with the number and managed to actually remember my mom's maiden name, etc, without missing a beat. So after those two stops, the score stands as Me: 2, J: 3. I'm optimistic, though, since I haven't gotten a chance at two of the three DMV counter people yet, that I may win. It's not every day a perfectly ordinary-looking young person trades in their right to drive, after all. But who knows. The sex change may win in the end. XD
Showing posts with label my man. Show all posts
Showing posts with label my man. Show all posts
Wednesday, August 3, 2011
Tuesday, June 21, 2011
Wedding Plans: A Disaster Movie
As I might have mentioned I've been planning (or attempting to plan) my wedding since we decided on a date around November. Since then, the universe has been doing its best to foil everything, to the point where it's seriously getting comical. XD
Well, from the start, as a legally gay couple, we can't have the thing in whatever state. All the states where our families live don't have legal gay marriage, though at least Illinois will recognize it as a civil union after some other state does the dirty work. Not that that does us a lot of good yet. Fortunately, Iowa is allowing it at least for now, much to everyone's surprise. No offense to Iowa, but it isn't the first place you think of when you think of inclusive rights. It's like, the first place you think of when you think of corn fields, pig barns and windmills. But who am I to complain. We even were living there when we started planning, and thought we would be for several years. Plenty of time to get married and enjoy the legitimacy, official status and things like me being on my transman's insurance even before he gets surgery. So we set a date, now only a couple of weeks away, excited to become bound together for life officially.
We had the thing mostly done after a few months when we hit a snag and decided to switch parks because of various constraints on what we could put up and rent at our original park. And, me being me, the lack of bathroom there posed a problem. We had figured out everything else except our hotel and the flowers. So we went down to the area we had chosen (the only place my relatives could easily fly into from Texas) and chose a better park we liked even more. We loved this park; everything about it was perfect. It was private, allowed our dogs, had a great pavilion with the perfect seating, and a deck onto the Missouri River (I have a thing for water). So we booked it, even more excited then before. While there we found a great P.F. Chang's for the rehearsal dinner (a restaurant famous for gluten-free options- If you're a Celiac and like Chinese food, GO THERE). We returned to our home in Iowa, pleased with ourselves.
By then we knew that we were moving back to Wisconsin for an indefinite period of time to live with my fiance's parents again. Both J and the school he was teaching at decided separately that he wouldn't be continuing with them next year. We applied all over the country for a new teaching position, but then everything changed when we realized J is going to go through gender transition this next year. After all, the public school system isn't really the best place to do that. Still, the wedding was on, mostly planned and going to be in Iowa whether we lived there anymore or not because it's the only state in the Midwest where we could do it.
And that was when all the flooding began. You've probably seen it on the news. The Missouri is closing roads and chasing people out of their homes, and because of where our perfect park was, it was the first thing to be underwater. We got an email from the county park people right after the flooding began. Frustrated, we started looking for somewhere else to have it.
It took us awhile to give up on having it outside, then awhile longer to give up having it on the Iowa side of the river. Meanwhile we were moving and I was coming down with mono. Everything was up in the air for awhile. Then J's older brother called us to tell us about a really nice indoor place in Omaha, complete with art gallery and Asian theme, that was full of natural light. We really liked it, and decided it was worth having our wedding ceremony happen across the river from the official paperwork. Relieved, we booked it and agreed to have two ceremonies: one five minute legal one and then one for our guests.
And then I got really sick and went to the doctor to discover that I have mono. I got put on lots of meds and spent the last week in bed, slowly starting to feel human again. Unfortunately, it was basically guaranteed that J caught it from me because we share glasses and other dishes (and make out >.>) all the time. Oh great, we thought. I'm almost through the worst of it and will most likely be totally fine by the wedding, but he's just starting to show fatigue. And that means, unless we're extremely lucky, he's going to be sick on the 9th. As a virus it could last any lengthy of time and all you can do to speed up healing is lie down a lot. But you also never know; he's very healthy most of the time, so fatigue might be all he gets. And because we don't know for sure, we don't want to cancel after all we've done getting the thing planned (not to mention all of our guests having bought their plane tickets).
So we're thinking, okay, so what else could go wrong? Volcanoes? A lightning strike right on the place we chose, instantly vaporizing it? I even put a joke in my mass email about it. Then we start hearing about nuclear reactors getting flooded upriver. Even I didn't see that one coming. Nuclear reactors? Really? So I asked my dad, who has worked in them before, if we should be worried about this because my mother-in-law is freaking out. He says that no, they were able to shut them down and therefore people in the area aren't in any danger. So I'm like, cool. At least my wedding won't give anyone radiation poisoning. (What is with all this?? Right?)
And then I start hearing that they might shut down the Omaha Airport. Now, out of all this stuff, that has the potential to kill it. There are only a few people driving and almost everyone is flying in there, including my parents. At least they've said they will drive if their flight gets rerouted, but the other guests I'm not so sure about. It kills me because at this point, I just want to get the damned thing over with so I can stop messing with it. Honestly, I'm not into weddings. I wanted to elope but J and I decided we would have a ceremony so our families could be there. Also, when it hasn't been legal for very long, it's almost a statement saying, look, we may be two women (so we thought at the time anyway) but we're just a normal couple. And we weren't sure how our extended families would react, so it was a way of including them in the process, allowing them to meet each other, and before it got irritatingly complicated, I was starting to actually look forward to it. J is changing his name when I do so it's also a step in his transition.
In other words, I want this to happen, but the world may not. I don't know which would be worse: changing the date to the fall sometime or just doing it in a closer county without any of my family or friends present. I don't want to wait, I don't want to plan another big thing some other time, and I don't want to have to leave it out of reach of my family. All the choices suck.
Now I'm left to wait and see. What happens with the flooding in the next two weeks will most likely determine its fate. I decided I don't want to cancel it all unless the airport closes because that way, people will get their tickets refunded. I'm afraid that if I cancel it short of that I'm going to regret it. So I might be getting married. Or, the world might continue to pretend to be the movie 2012. Fingers crossed is all I can do.
Well, from the start, as a legally gay couple, we can't have the thing in whatever state. All the states where our families live don't have legal gay marriage, though at least Illinois will recognize it as a civil union after some other state does the dirty work. Not that that does us a lot of good yet. Fortunately, Iowa is allowing it at least for now, much to everyone's surprise. No offense to Iowa, but it isn't the first place you think of when you think of inclusive rights. It's like, the first place you think of when you think of corn fields, pig barns and windmills. But who am I to complain. We even were living there when we started planning, and thought we would be for several years. Plenty of time to get married and enjoy the legitimacy, official status and things like me being on my transman's insurance even before he gets surgery. So we set a date, now only a couple of weeks away, excited to become bound together for life officially.
We had the thing mostly done after a few months when we hit a snag and decided to switch parks because of various constraints on what we could put up and rent at our original park. And, me being me, the lack of bathroom there posed a problem. We had figured out everything else except our hotel and the flowers. So we went down to the area we had chosen (the only place my relatives could easily fly into from Texas) and chose a better park we liked even more. We loved this park; everything about it was perfect. It was private, allowed our dogs, had a great pavilion with the perfect seating, and a deck onto the Missouri River (I have a thing for water). So we booked it, even more excited then before. While there we found a great P.F. Chang's for the rehearsal dinner (a restaurant famous for gluten-free options- If you're a Celiac and like Chinese food, GO THERE). We returned to our home in Iowa, pleased with ourselves.
By then we knew that we were moving back to Wisconsin for an indefinite period of time to live with my fiance's parents again. Both J and the school he was teaching at decided separately that he wouldn't be continuing with them next year. We applied all over the country for a new teaching position, but then everything changed when we realized J is going to go through gender transition this next year. After all, the public school system isn't really the best place to do that. Still, the wedding was on, mostly planned and going to be in Iowa whether we lived there anymore or not because it's the only state in the Midwest where we could do it.
And that was when all the flooding began. You've probably seen it on the news. The Missouri is closing roads and chasing people out of their homes, and because of where our perfect park was, it was the first thing to be underwater. We got an email from the county park people right after the flooding began. Frustrated, we started looking for somewhere else to have it.
It took us awhile to give up on having it outside, then awhile longer to give up having it on the Iowa side of the river. Meanwhile we were moving and I was coming down with mono. Everything was up in the air for awhile. Then J's older brother called us to tell us about a really nice indoor place in Omaha, complete with art gallery and Asian theme, that was full of natural light. We really liked it, and decided it was worth having our wedding ceremony happen across the river from the official paperwork. Relieved, we booked it and agreed to have two ceremonies: one five minute legal one and then one for our guests.
And then I got really sick and went to the doctor to discover that I have mono. I got put on lots of meds and spent the last week in bed, slowly starting to feel human again. Unfortunately, it was basically guaranteed that J caught it from me because we share glasses and other dishes (and make out >.>) all the time. Oh great, we thought. I'm almost through the worst of it and will most likely be totally fine by the wedding, but he's just starting to show fatigue. And that means, unless we're extremely lucky, he's going to be sick on the 9th. As a virus it could last any lengthy of time and all you can do to speed up healing is lie down a lot. But you also never know; he's very healthy most of the time, so fatigue might be all he gets. And because we don't know for sure, we don't want to cancel after all we've done getting the thing planned (not to mention all of our guests having bought their plane tickets).
So we're thinking, okay, so what else could go wrong? Volcanoes? A lightning strike right on the place we chose, instantly vaporizing it? I even put a joke in my mass email about it. Then we start hearing about nuclear reactors getting flooded upriver. Even I didn't see that one coming. Nuclear reactors? Really? So I asked my dad, who has worked in them before, if we should be worried about this because my mother-in-law is freaking out. He says that no, they were able to shut them down and therefore people in the area aren't in any danger. So I'm like, cool. At least my wedding won't give anyone radiation poisoning. (What is with all this?? Right?)
And then I start hearing that they might shut down the Omaha Airport. Now, out of all this stuff, that has the potential to kill it. There are only a few people driving and almost everyone is flying in there, including my parents. At least they've said they will drive if their flight gets rerouted, but the other guests I'm not so sure about. It kills me because at this point, I just want to get the damned thing over with so I can stop messing with it. Honestly, I'm not into weddings. I wanted to elope but J and I decided we would have a ceremony so our families could be there. Also, when it hasn't been legal for very long, it's almost a statement saying, look, we may be two women (so we thought at the time anyway) but we're just a normal couple. And we weren't sure how our extended families would react, so it was a way of including them in the process, allowing them to meet each other, and before it got irritatingly complicated, I was starting to actually look forward to it. J is changing his name when I do so it's also a step in his transition.
In other words, I want this to happen, but the world may not. I don't know which would be worse: changing the date to the fall sometime or just doing it in a closer county without any of my family or friends present. I don't want to wait, I don't want to plan another big thing some other time, and I don't want to have to leave it out of reach of my family. All the choices suck.
Now I'm left to wait and see. What happens with the flooding in the next two weeks will most likely determine its fate. I decided I don't want to cancel it all unless the airport closes because that way, people will get their tickets refunded. I'm afraid that if I cancel it short of that I'm going to regret it. So I might be getting married. Or, the world might continue to pretend to be the movie 2012. Fingers crossed is all I can do.
Friday, May 6, 2011
Disability Daily Activities Worksheet- My Answers
As mentioned in my last post, I've decided to take the long road of applying for disability in order to get insurance and hopefully a small amount of income. I'm still researching the process with my mom's help, so don't have a lot to tell you about it yet, but we found a worksheet that I've filled out explaining my condition. The form itself is copywritten, so I'm just going to copy and paste my answers to the questions to avoid getting in trouble.
So, here's more about my inability to work due to my severe narcolepsy... hopefully it helps someone to relate or understand. If you want the actual form, it's from http://www.disabilityfacts.com .
--------------------------------------------------------------
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.
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 .
--------------------------------------------------------------
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.
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
Wednesday, March 9, 2011
TRANSformation
I stopped writing, not because there hasn't been lot on my mind or because narcolepsy is leaving me alone, but rather because there's been a shift of my priorities for the last month or so. There's nothing like someone you love going through a lot to take you away from thinking about your own problems.
I'm not sure if I've mentioned on here that my girlfriend, who I'm going to refer to as J, has had depression problems for most of her life. Since I moved in with her a year ago I've been working on helping her figure out the root causes of it, since I've also had it most of my life and have found my own fairly effective ways of dealing with it. Basically I'm there for her to talk to about anything, and I bother J to talk and write through things she's feeling. So far it's seemed to open up a new world of thinking about herself for her and she's discovered many things about her identity since we started. The latest of these discoveries surprised us both and turned our mental worlds upside down, while at the same time not changing a single thing about J or our relationship.
It started a month ago when we had been talking about sexuality. It's a weird issue for both of us. On the surface we are defined as a lesbian couple, but neither of us feels comfortable calling us that. Our gender roles are very clear-cut- she brings home the bacon and I cook and clean. It's almost maniacally traditional, which seems weird because neither of us have very traditional value systems. We had been talking about it on the weekend, and then J took our big dog for a walk, and when she came back she had this sort of shell-shocked expression on her face. When I asked her what it was, she said simply, "I think... I'm a dude."
We stood there and looked at each other. I felt like I was seeing her for the first time as a whole cascade of ideas fell into place. The transformation in my head went something like this:
OH!!!
unfounded depression --> gender dysphoria
gay couple --> straight couple
masculine "quirks" --> male personality
weird about clothing --> accidentally cross-dressing
girlyness --> overcompensating
bisexual --> wants to have male body + is straight
uncomfortable at work --> forced to playact being a woman
hates her body for some unknown reason --> IN THE WRONG BODY
Does this change how I feel about her? --> NO.
And then I really looked at her face, imagined her with short hair and told her I thought that she could pass as male if she wanted to. And started laughing and gave her a hug. I was/am so proud of her for figuring out the missing piece. She says that the realization for her came with a massive sense of relief.
We were both brain-crashed for the next week processing this. It wasn't that anything was different between us, or even about J. We just kept thinking of more ways in which it explains everything that either of us have been wondering about her. We're still coming up with things and it's been a month.
We found a great transsexual resources forum, Laura's Playground, and it's been a really good source of information since neither of us knew much about being trans before this. We decided to go look for clothes and got a bunch of things from the men's department for J. I've gone shopping with her for women's clothing a lot, and she was always dissatisfied while trying things on. She might find one thing that she could stand (and that fit well) out of ten things. The first time J tried on a guy's flannel shirt, she was smiling, it fit her, and it seemed essentially her somehow. I also cut her very long hair into a short and fairly androngynous style and it looked and felt much better to her.
At this point I'm going to switch pronouns on you, because saying "she" and "her" is driving me nuts. But I wanted to make it clear that I'm still engaged to my soulmate, the same one as before, and that I haven't switched people on you, it's just that my "girl" became my "man". Though "became" isn't the right word at all.
J has a gender therapist appointment for two weeks from today, and I'm going with him to provide moral support. I've been his unofficial therapist over the last year, and I seem to have done a reasonable job, but transpeople have unique challenges to face internally and externally and I feel out of my depth. So we'll see how that goes. J says he doesn't plan to start hormone treatment or get surgery, but if he changes his mind I'm supportive. I figure it's my job as the woman here to make sure he's taken care of. :) I've been doing that all along anyway... I think J's hoping they'll scan his brain to see if it's structurally almost male.
So the whole thing adds a new dimension to the interestingness of our life together. At least I'm not the only unusual one anymore. I don't know if I'd call us even though. It's hard to beat me, the hallucinating sleep contradiction, even with a man's brain in a female body. XD I'll just call us odd instead.
I'm not sure if I've mentioned on here that my girlfriend, who I'm going to refer to as J, has had depression problems for most of her life. Since I moved in with her a year ago I've been working on helping her figure out the root causes of it, since I've also had it most of my life and have found my own fairly effective ways of dealing with it. Basically I'm there for her to talk to about anything, and I bother J to talk and write through things she's feeling. So far it's seemed to open up a new world of thinking about herself for her and she's discovered many things about her identity since we started. The latest of these discoveries surprised us both and turned our mental worlds upside down, while at the same time not changing a single thing about J or our relationship.
It started a month ago when we had been talking about sexuality. It's a weird issue for both of us. On the surface we are defined as a lesbian couple, but neither of us feels comfortable calling us that. Our gender roles are very clear-cut- she brings home the bacon and I cook and clean. It's almost maniacally traditional, which seems weird because neither of us have very traditional value systems. We had been talking about it on the weekend, and then J took our big dog for a walk, and when she came back she had this sort of shell-shocked expression on her face. When I asked her what it was, she said simply, "I think... I'm a dude."
We stood there and looked at each other. I felt like I was seeing her for the first time as a whole cascade of ideas fell into place. The transformation in my head went something like this:
OH!!!
unfounded depression --> gender dysphoria
gay couple --> straight couple
masculine "quirks" --> male personality
weird about clothing --> accidentally cross-dressing
girlyness --> overcompensating
bisexual --> wants to have male body + is straight
uncomfortable at work --> forced to playact being a woman
hates her body for some unknown reason --> IN THE WRONG BODY
Does this change how I feel about her? --> NO.
And then I really looked at her face, imagined her with short hair and told her I thought that she could pass as male if she wanted to. And started laughing and gave her a hug. I was/am so proud of her for figuring out the missing piece. She says that the realization for her came with a massive sense of relief.
We were both brain-crashed for the next week processing this. It wasn't that anything was different between us, or even about J. We just kept thinking of more ways in which it explains everything that either of us have been wondering about her. We're still coming up with things and it's been a month.
We found a great transsexual resources forum, Laura's Playground, and it's been a really good source of information since neither of us knew much about being trans before this. We decided to go look for clothes and got a bunch of things from the men's department for J. I've gone shopping with her for women's clothing a lot, and she was always dissatisfied while trying things on. She might find one thing that she could stand (and that fit well) out of ten things. The first time J tried on a guy's flannel shirt, she was smiling, it fit her, and it seemed essentially her somehow. I also cut her very long hair into a short and fairly androngynous style and it looked and felt much better to her.
At this point I'm going to switch pronouns on you, because saying "she" and "her" is driving me nuts. But I wanted to make it clear that I'm still engaged to my soulmate, the same one as before, and that I haven't switched people on you, it's just that my "girl" became my "man". Though "became" isn't the right word at all.
J has a gender therapist appointment for two weeks from today, and I'm going with him to provide moral support. I've been his unofficial therapist over the last year, and I seem to have done a reasonable job, but transpeople have unique challenges to face internally and externally and I feel out of my depth. So we'll see how that goes. J says he doesn't plan to start hormone treatment or get surgery, but if he changes his mind I'm supportive. I figure it's my job as the woman here to make sure he's taken care of. :) I've been doing that all along anyway... I think J's hoping they'll scan his brain to see if it's structurally almost male.
So the whole thing adds a new dimension to the interestingness of our life together. At least I'm not the only unusual one anymore. I don't know if I'd call us even though. It's hard to beat me, the hallucinating sleep contradiction, even with a man's brain in a female body. XD I'll just call us odd instead.
Subscribe to:
Posts (Atom)
