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.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Tuesday, June 21, 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
Wednesday, April 13, 2011
Grandparents' Glass Maze House
Last night, I was visiting my grandparents at their house in small town Texas. In real life, they have a back room that they basically use to store stuff and when I was little it kind of creeped me out back there. So, of course, for as long as I've been having nightmares, some of them have taken place in there.
In the dream I was having seriously crazy drama with my cousins for awhile when we finally decided to go back into that room. It was dark and we were enjoying creeping each other out. Each time we found a new doorway, we would go through to see what was there. At first, the rooms looked like the rest of the house and formed hallways in an almost maze-like fashion, but then we passed this huge floor-to-ceiling window that looked out on a small courtyard. There was furniture piled outside in the rain with grass growing all around it.
Of course, I was like, "we should go try to get in there!" because my fiance an I have been talking about needing a couch for some time, lol. So then my cousin spots a door leading out there, but it's coming from a different direction, so we start heading that way to see if we can find it.
We emerge from the dark, cramped hallway of dark wood and wallpaper into this giant ballroom with walls and ceiling made out of glass. Looking through the walls, we see other glass rooms receding into the distance in every direction, most of them piled up with old furniture or figurines on shelves. There's a lot of stuff but it's pretty spread out between the rooms, leaving lots of empty floorspace. We spread out individually to see what's around, and I spot the door into the courtyard off to my right. I start heading over there, but I run smack into a glass wall because I'm so focused on what's behind it that I don't see it in time, which makes everybody (including me) laugh.
I look around and find the way around the wall, which happens to be a wheelchair ramp with old hotel brass railings and ugly red patterned carpet. So I run up it and around the wall and reach the glass door.
I look outside and see the courtyard more clearly. Against the wall to my left is the furniture and the small grassy space is otherwise overgrown. The blue couch I was so excited about has a big hole in it and is next to this hilariously 70s chair with a giant light blue and puke orange plaid pattern on it. My cousins have come over and we're laughing at how ugly the chair is.
Suddenly I hear barking and realize that there are three boxers (all of them brown and white) in the yard, two of them chained up next to the door and the third roaming free. My cousin opens the door and starts to step outside and the dogs go nuts. Just then, my grandmother finds us, telling us off for going so far back into the house. She goes out and gives the dogs chunks of steak to quiet them down.
And then I woke up, still wondering if that couch can be repaired.
In the dream I was having seriously crazy drama with my cousins for awhile when we finally decided to go back into that room. It was dark and we were enjoying creeping each other out. Each time we found a new doorway, we would go through to see what was there. At first, the rooms looked like the rest of the house and formed hallways in an almost maze-like fashion, but then we passed this huge floor-to-ceiling window that looked out on a small courtyard. There was furniture piled outside in the rain with grass growing all around it.
Of course, I was like, "we should go try to get in there!" because my fiance an I have been talking about needing a couch for some time, lol. So then my cousin spots a door leading out there, but it's coming from a different direction, so we start heading that way to see if we can find it.
We emerge from the dark, cramped hallway of dark wood and wallpaper into this giant ballroom with walls and ceiling made out of glass. Looking through the walls, we see other glass rooms receding into the distance in every direction, most of them piled up with old furniture or figurines on shelves. There's a lot of stuff but it's pretty spread out between the rooms, leaving lots of empty floorspace. We spread out individually to see what's around, and I spot the door into the courtyard off to my right. I start heading over there, but I run smack into a glass wall because I'm so focused on what's behind it that I don't see it in time, which makes everybody (including me) laugh.
I look around and find the way around the wall, which happens to be a wheelchair ramp with old hotel brass railings and ugly red patterned carpet. So I run up it and around the wall and reach the glass door.
I look outside and see the courtyard more clearly. Against the wall to my left is the furniture and the small grassy space is otherwise overgrown. The blue couch I was so excited about has a big hole in it and is next to this hilariously 70s chair with a giant light blue and puke orange plaid pattern on it. My cousins have come over and we're laughing at how ugly the chair is.
Suddenly I hear barking and realize that there are three boxers (all of them brown and white) in the yard, two of them chained up next to the door and the third roaming free. My cousin opens the door and starts to step outside and the dogs go nuts. Just then, my grandmother finds us, telling us off for going so far back into the house. She goes out and gives the dogs chunks of steak to quiet them down.
And then I woke up, still wondering if that couch can be repaired.
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, July 22, 2010
My (ex-)Neurologist Is a Jerkface
So, like I said, I got an appointment with a new neurologist for August. My girlfriend, being awesome and helpful, agreed to call my old neurologist's office and tell them, plus find out how we could get my records- we agreed we want our own copy in addition to giving them to the new doctor. So several weeks ago, she did this for me. The receptionist was helpful and wrote it all in my file, but told us that I would have to come in person to pick up the records, which I was halfway expecting. We asked if my mom could come in and get them (since she is, you know, in the right state and we aren't), and we were told that she couldn't since I'm over 18. Several weeks later we were going to fly down to get my car and more of my stuff and to visit anyway, so we figured we could come get the records then.
So the several weeks passed. Then, the night before we were leaving to fly down, I find a message on my phone saying that I need to schedule an appointment with him. I was like, no way in hell, thank you very much. I have good reasons to be moving on. When I told my mom about it she got really annoyed. Apparently family members can pick up medical records if they have a signed note, and she volunteered so I wouldn't have to go to his office again. We were also angry because it seemed that he wasn't going to renew my prescriptions, which I just needed for one more month before my appointment with the new doctor. But once it became clear that I wasn't going to come in to be bullied by him again, he approved my prescriptions after all. Which is a good thing because most of the point in going to the new neurologist is to get off of Xyrem safely. Doctors... can't live with 'em...
Meanwhile, we had a good but exhausting visit to my hometown, and then a very long drive back up here. We've mostly recovered and I'm feeling much more moved in. :) I'm hitting new lows in energy level, but what's new. I just hope the neurologist I'm seeing in August is an improvement over the last one. (Not hard to do.)
So the several weeks passed. Then, the night before we were leaving to fly down, I find a message on my phone saying that I need to schedule an appointment with him. I was like, no way in hell, thank you very much. I have good reasons to be moving on. When I told my mom about it she got really annoyed. Apparently family members can pick up medical records if they have a signed note, and she volunteered so I wouldn't have to go to his office again. We were also angry because it seemed that he wasn't going to renew my prescriptions, which I just needed for one more month before my appointment with the new doctor. But once it became clear that I wasn't going to come in to be bullied by him again, he approved my prescriptions after all. Which is a good thing because most of the point in going to the new neurologist is to get off of Xyrem safely. Doctors... can't live with 'em...
Meanwhile, we had a good but exhausting visit to my hometown, and then a very long drive back up here. We've mostly recovered and I'm feeling much more moved in. :) I'm hitting new lows in energy level, but what's new. I just hope the neurologist I'm seeing in August is an improvement over the last one. (Not hard to do.)
Monday, June 28, 2010
Creepy Nights
I've officially started having nightmares again... I think it's three nights in a row now. At least there has only been one each night so far. I can remember a time when it was every night, all night, and I'm hoping it won't come to that.
I was in one of the upstairs bedrooms of where I'm living now, and the layout was more or less accurate (not a good sign). I couldn't sleep, so I got up and was walking around the room. I started to get scared because the other bedroom (on the other side of the bathroom) was pitch black and I kept hearing creepy noises. Eventually I went in the bathroom to peer in the other room, and saw minotaurs and a werewolf with glowing red eyes, beckoning me. I ran back into our room, totally freaked out. The creatures followed me and stood in the bathroom, staring. I wanted my girlfriend to wake up and reassure me, but she was so asleep that shaking her didn't work.
In another, I was in the same upstairs, only our bedroom was huge- three or four times the size it really is- so that my lamp didn't even begin to reach the corners. Again, I had gotten up to go to the bathroom. I was extremely creeped out because I kept seeing twisted monsters and rotting dead things in the corners, all staring at me. I figured I was hallucinating, so I went into the bathroom (now the one from our college apartment) and started splashing water on my face. It didn't really help- I was still seeing creepy things twitching and moving around every time I passed a patch of darkness. So I hurried back to bed, with my eyelids trying to close the whole way. I sat up in bed and just waited, and turned on the overhead light. After awhile my girlfriend woke up and I talked to her for a minute. Then she got up and started moving around and put on some really creepy music. I asked her to turn it off because it was making me more freaked out, but she didn't seem to hear me. Then our other college roommate was there, talking about how awesome the music was (which is funny, because she hates creepy music ten times more than I do). Eventually they took it downstairs and I tried to go back to sleep, but I could still hear the music a little because the room suddenly had a balcony over the living room.
And then last night it was tornados. For some reason I've always had lots of tornado dreams. This time I was at my grandparents' house, only of course it was suddenly three stories instead of one and had sliding glass doors, because that makes sense, and there were stairs everywhere. I basically spent the entire dream trying to corral our two dogs into a safe downstairs bedroom as multiple tornados came within inches of various parts of the house without actually doing anything. The dogs were constantly getting away from me and ending up in the backyard, or next to windows with a tornado on the other side of them, or dancing circles around me as I got more and more exhausted trying to capture them. Or the room I was taking them would suddenly sprout glass doors or giant windows, and I would get really scared that it wasn't safe, and suddenly there would be three tornados outside coming closer. Meanwhile my grandparents and girlfriend were going on like we weren't all about to be torn to pieces, standing around chatting or making lunch, lol.
I was in one of the upstairs bedrooms of where I'm living now, and the layout was more or less accurate (not a good sign). I couldn't sleep, so I got up and was walking around the room. I started to get scared because the other bedroom (on the other side of the bathroom) was pitch black and I kept hearing creepy noises. Eventually I went in the bathroom to peer in the other room, and saw minotaurs and a werewolf with glowing red eyes, beckoning me. I ran back into our room, totally freaked out. The creatures followed me and stood in the bathroom, staring. I wanted my girlfriend to wake up and reassure me, but she was so asleep that shaking her didn't work.
In another, I was in the same upstairs, only our bedroom was huge- three or four times the size it really is- so that my lamp didn't even begin to reach the corners. Again, I had gotten up to go to the bathroom. I was extremely creeped out because I kept seeing twisted monsters and rotting dead things in the corners, all staring at me. I figured I was hallucinating, so I went into the bathroom (now the one from our college apartment) and started splashing water on my face. It didn't really help- I was still seeing creepy things twitching and moving around every time I passed a patch of darkness. So I hurried back to bed, with my eyelids trying to close the whole way. I sat up in bed and just waited, and turned on the overhead light. After awhile my girlfriend woke up and I talked to her for a minute. Then she got up and started moving around and put on some really creepy music. I asked her to turn it off because it was making me more freaked out, but she didn't seem to hear me. Then our other college roommate was there, talking about how awesome the music was (which is funny, because she hates creepy music ten times more than I do). Eventually they took it downstairs and I tried to go back to sleep, but I could still hear the music a little because the room suddenly had a balcony over the living room.
And then last night it was tornados. For some reason I've always had lots of tornado dreams. This time I was at my grandparents' house, only of course it was suddenly three stories instead of one and had sliding glass doors, because that makes sense, and there were stairs everywhere. I basically spent the entire dream trying to corral our two dogs into a safe downstairs bedroom as multiple tornados came within inches of various parts of the house without actually doing anything. The dogs were constantly getting away from me and ending up in the backyard, or next to windows with a tornado on the other side of them, or dancing circles around me as I got more and more exhausted trying to capture them. Or the room I was taking them would suddenly sprout glass doors or giant windows, and I would get really scared that it wasn't safe, and suddenly there would be three tornados outside coming closer. Meanwhile my grandparents and girlfriend were going on like we weren't all about to be torn to pieces, standing around chatting or making lunch, lol.
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.
Labels:
Celiac,
dream,
family,
food,
friends,
girlfriend,
narcolepsy
Tuesday, March 2, 2010
Soapy Arm Neon Barn Night Picnic
I've intentionally slept in for a couple of days in a row now. On Monday this worked really well and I felt great- way more refreshed than if I'd gotten up when I normally do. I think I needed the extra sleep after having a busy day on Sunday, plus recovering from being sick last week. So I figured I'd try it again today. Well, it didn't exactly go as I was hoping. I basically just ended up dreaming like crazy.
In one dream, I was in my grandparents' house using their bathtub (only it was the one that was there when I was little- they've since remodeled). I had hurt my arm- I couldn't move it and it hurt, so I'm assuming I had broken it- riding my bicycle the wrong direction down a busy street. As I recalled this, the dream took me there, and I dreamed about dodging cars and looking for someone I was supposed to be following, for some reason into oncoming traffic. Suddenly I jerked back into the bathtub, where I was sitting in extremely soapy water while fully clothed, trying to clean my broken arm for some reason. It was really slimy soap and I could feel it soaked through my jeans. I dipped my arm into it and slipped- I fell forward suddenly and got a face-full of soap. I shut my eyes but it went in my nose and mouth and I couldn't breathe for a minute. I sat up carefully and tried to rinse off my face, but I was using my really soapy hands so I just made it worse instead. Then I fell forward again. I don't remember anything else from that one. I could literally feel the sliminess and wetness of the soapy water, though.
Another dream had me visiting various cousins who I haven't seen in awhile. One of them was living in this gigantic house with a crazy barn in the yard. The barn was like a house by itself- completely finished on the inside and painted in totally crazy neon colors. The rooms/stalls were huge and my cousin was telling me that she was planning on raising massive numbers of cats in them. There wasn't any furniture and so everything we said echoed loudly. I don't remember much more about that dream except that I was telling another cousin about some memories that I had, only they were actually dreams I've had before- some of them years ago. In the dream I was convinced they had been real. In a way it was cool because there were several I hadn't thought about in years.
In my last dream I was driving around with my girlfriend through a dark wooded area on a little road at night. We were on a date and had brought a picnic and were looking for someplace to set it up. We kept passing other couples sitting in all of the good spots, some of them up in trees. Eventually we ended up at a house that was on the side of the road- it looked like it belonged in a suburb, not the middle of the woods, and it had a floodlight that lit it and the driveway with a stark yellowish light. She wanted to go up and knock to see if we could have our picnic on the owner's land, but I was worried and didn't want to. She knocked and no one was there, so instead we found a patch of moonlight down the road and ate our picnic in the car.
In one dream, I was in my grandparents' house using their bathtub (only it was the one that was there when I was little- they've since remodeled). I had hurt my arm- I couldn't move it and it hurt, so I'm assuming I had broken it- riding my bicycle the wrong direction down a busy street. As I recalled this, the dream took me there, and I dreamed about dodging cars and looking for someone I was supposed to be following, for some reason into oncoming traffic. Suddenly I jerked back into the bathtub, where I was sitting in extremely soapy water while fully clothed, trying to clean my broken arm for some reason. It was really slimy soap and I could feel it soaked through my jeans. I dipped my arm into it and slipped- I fell forward suddenly and got a face-full of soap. I shut my eyes but it went in my nose and mouth and I couldn't breathe for a minute. I sat up carefully and tried to rinse off my face, but I was using my really soapy hands so I just made it worse instead. Then I fell forward again. I don't remember anything else from that one. I could literally feel the sliminess and wetness of the soapy water, though.
Another dream had me visiting various cousins who I haven't seen in awhile. One of them was living in this gigantic house with a crazy barn in the yard. The barn was like a house by itself- completely finished on the inside and painted in totally crazy neon colors. The rooms/stalls were huge and my cousin was telling me that she was planning on raising massive numbers of cats in them. There wasn't any furniture and so everything we said echoed loudly. I don't remember much more about that dream except that I was telling another cousin about some memories that I had, only they were actually dreams I've had before- some of them years ago. In the dream I was convinced they had been real. In a way it was cool because there were several I hadn't thought about in years.
In my last dream I was driving around with my girlfriend through a dark wooded area on a little road at night. We were on a date and had brought a picnic and were looking for someplace to set it up. We kept passing other couples sitting in all of the good spots, some of them up in trees. Eventually we ended up at a house that was on the side of the road- it looked like it belonged in a suburb, not the middle of the woods, and it had a floodlight that lit it and the driveway with a stark yellowish light. She wanted to go up and knock to see if we could have our picnic on the owner's land, but I was worried and didn't want to. She knocked and no one was there, so instead we found a patch of moonlight down the road and ate our picnic in the car.
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