Saturday, December 24, 2011
I may put some baked-goods photos up tomorrow or Monday. Possibly a few more, depending on what kinds of photos I take while I'm hiding behind my camera tomorrow. I already have better photos of animals than I've ever been able to take before, thanks to more and better manual settings on the Nikon D50 than my point-and-shoot camera has. I'm pretty excited, because I always want cat pictures to look at while I'm at school, but I only have a few that are any good (meaning, in focus and not blurry, not even necessarily good compositionally).
Thursday, December 22, 2011
Okay, so you know how I said my right index finger hurt earlier? Well, it STILL HURTS. I've already taken Tylenol, an anti-inflammatory, and my nighttime meds. But the Tylenol is wearing off, I can't take more for 20 minutes, and suddenly my finger hurts again. I've been icing it off and on all night, which helps temporarily, but not for long. And it hurts to type, damn it. I was trying not to cry earlier while I was trying to heat up my dinner one-handed. I don't know where this came from, or why, or what the hell I did to it.
I just know it hurts.
And that I want it to stop.
Is two days not long enough?
Hello all! It's been a while, hasn't it? I've been busy, for a while. I had finals last week into Monday, because of an extension. I don't have grades yet, but the semester is done, at least. I drove home on Sunday after successfully closing my building.
It's an even bigger adjustment coming home this winter than usual. My alcoholic/abusive step-father finally left, after my mom kicked him out. That, of course, messed up family finances, and the end result is that my uncle is now my mother's roommate, which means I don't have a room anymore. My mother offered her bed, and I'm leaving most of my belongings in her room, but I'm sleeping on the couch because I am not comfortable sharing a bed, particularly with my mother, and to top it off she snores. The first night I tried sleeping in her room, I woke up at 4am to snoring and couldn't fall back to sleep until I moved to the couch.
Since I'm sleeping on the couch, and the couch is in the living room where everyone hangs out, I have to wait for my mom and uncle to go to bed, and then kick my brother out of the living room. I have no idea why he's been here every night until after everyone goes to bed. He just stays and uses his phone and iPod. It's weird to me that people spend as much time playing games and chatting on their phones as I do on my computer, which I *think* has more functions on it? But a side-effect of all this is that I don't feel ... secure... in the house. The outside door isn't locked until my brother leaves for his apartment, which is usually after I fall asleep (usually after midnight, which I'm not terribly happy about). I'm also used to two locked doors between me and my electronics and the outside world.
Monday, December 12, 2011
Does anyone have suggestions for a parve (non-dairy, non-meat) side dish? Preferably something relatively uncomplicated to make; I'll probably be making it and I have fairly minimal* cooking experience.
The only thing I'm coming up with is salad, which, cool, I love salad, but need to start figuring these kinds of things out anyways before I graduate, so I would love suggestions.
*I can make basics like pasta, red sauce, eggs, soups, stews, salads etc. but don't know a lot of cooking techniques.
ETA: In relation to the post just before this, an added request if possible: Suggestions for non-dairy/parve side dishes that aren't dry would be even more helpful.
Thanks to anyone who responds!
I've been using eye-drops almost daily because my eyes feel itchy and don't water when I rub at them. This would be somewhat normal if I was around my cats, because I'm allergic to cats, but I haven't been around them much, and not at all since US Thanksgiving.
I've also increasingly noticed that I go for wet food at the cafeteria. I might start out with dry food like a burger and french fries (like today's lunch) but I need to drink a lot in between bites, and then I end up getting ice cream for dessert to moisten my mouth. I particularly like green mint chip (what I otherwise call mint chocolate chip ice cream; green mint chip is the cafeteria's label) because the mint feels really cool in my mouth. Flavors like chocolate also do well, but I tend to avoid thicker, creamier ice cream like cookies and cream. I also haven't been eating as many dry baked deserts unless they're really moist.
As far as my skin goes, it's just really flaky in some places and oily in others; this is fairly normal for me in the winter, although I feel like I don't usually have flaky skin in my ears and around my mouth; it's usually just around my nose and eyebrows. On the other hand, the doctor said this is fairly common in people of Irish descent. My mother's side is Irish (+quite a few generations since immigration, but still; the genetics are there if slightly diluted).
And last but most certainly not least, I've been sleeping with a humidifier going in my room. The weirdest thing last night--I found the spout coated with some kind of red substance I couldn't identify. I cleaned it out, but still, it was strange. It's not like I dumped make-up in it or something, not that I wear make-up often in the first place.
At any rate, I'm thinking about asking for a new eye-drop prescription for dry-eyes instead of allergies, which is what my current one is for. Or at least, I would like a suggestion of what kind of eye-drops I need, given the sheer variety on the OTC shelves. I will address everything else next semester, so that I can continue with the health center doctor. I much prefer having one doctor keep track of all these things than to have me keep track of two or three different doctors' suggestions and what I've told to whom.
Thursday, December 8, 2011
I have to say, though, that my job seeps into my life in insidious ways. The latest bit of bad news sent me into mild shock and panic, but my training as a ResLife* staff member had already kicked in and set my mind to processing and brainstorming before I ever came out of the shock. Within two or three hours I had phone numbers and names to offer as resources for solving the problem or at least getting a reprieve and learning about various options related to the problem. I passed these on to the person who needed to know. I stepped into the role of objectively thinking and finding resources, which is exactly what my ResLife training would have me doing. Even if I was also emotionally involved.
I just never realized I could apply it to problems off-campus, or that I wouldn't need to consciously apply it because it would just happen. Which makes me think that the training was very effective. Life skills. I wonder what else I'll be applying this to?
*short for Residential Life; I'm not sure how common the term is in the wider world
Wednesday, December 7, 2011
- The breathing techniques used in voice lessons open up arteries in the head. Assuming the headache is from constricted blood vessels, this actually makes the headache go away. Thankfully, mine was that kind of headache.
- Ponchos work just as well as umbrellas to keep the rain off, even when there are small holes in the front of it from the first time I wore it and left it out to dry, and the cat decided to check it out with her claws. [I accidentally left my umbrella at my mother's house over (US) Thanksgiving week.]
Otherwise, I'm just very busy because it's the last week of classes before finals.
Tuesday, November 29, 2011
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
-From The Spoon Theory by Christine Miserandino
Do you run through each day on the fly,
when you ask "How are you?", do you hear the reply?
When the day is done, do you lie in your bed,
with the next hundred chores running through your head?
You better slow down, don't dance so fast,
time is short, the music won't last.
-From Slow Dance by David L Weatherford (Warning: music and obnoxious formatting at the link)
I used to live a high-speed life, and in some ways still do. In high school, I took the most challenging courses offered each year, plus concert/marching band. Marching band by itself is a huge time commitment, involving band camp, after-school practices, in-school practices, home game performances, competitions, and annual ceremonies such as Veterans Day and Memorial Day. For two years in high school, I was involved in committees at the UU church I attended (my senior year, this was the Executive Committee). I was in chorus for one year in high school, and in the UU society choir for two. I participated in some GSA events. I went to poetry club meetings. I worked on the literary magazine. I volunteered. I somehow juggled all of these, if not effortlessly, at least well.
[A lot more after the break.]
Monday, November 28, 2011
But yesterday's drive set me back again. I was doing pretty well; I didn't need more than one stop to stretch, at which point I also refilled my tank. (Seriously, I've spent >$65 on gas in the last week, first to fill, then to get back to full after driving extra and then letting someone borrow my car. *sigh* I technically could have waited to refill my tank, but didn't anticipate prices being any better a week before Christmas than they are now. And I could have bought a new pair of shoes with that money.) The bad part of the driving came when I hit Hartford and there was stop-and-go traffic for I think more than a mile to get onto I-91, and then I-91 was backed up for another mile, so I spent at least half an hour longer on the road than usual, and all of that was for a kind of driving that really messes up my hip and knee. On a Sunday afternoon, which I thought would mean light traffic, but Thanksgiving, go figure. I actually resorted to two-footed driving for the stop-and-go, or my right leg would be a LOT worse today. As it is, I took the medical van once to get to the other end of campus for class.
Anywho, my leg isn't in agony today, which is a miracle in itself, but it also isn't working as well as it does when I haven't been driving a lot. It'll get better. I'll just nurse it for a few days. And no one here gets mad at me when I can't do stuff!
OTOH, my wrists are in a flare-up. Basically the symptom I have is that things feel "tight" as opposed to extremely painful all the time. I need to find effective massage techniques or exercises for those kinds of pains. It's not bad enough to impede my typing, but I kept massaging my right wrist while taking notes in class today. I think I ended up with four or five handwritten pages--no wonder it hurt! And this is starting the last three or so weeks of class and finals, which means, lots of papers to finish the semester. But it's almost over!
Thursday, November 24, 2011
ETA terminology: "zie" and "hir" are gender-neutral pronouns, sort of a cross between he/she and him/her.
My facebook status:
For the record: when I say I can't drive any more today, I mean I can't drive any more today.This has been bothering me since something happened earlier this evening in which the individual in question thought that telling me zie'd been driving a lot more meant that I didn't have the right to complain.
I know I don't LOOK disabled, but do you really want to see for yourself what happens when I push my body too far? Because been there, done that, have the (emotional) scars to prove it.
But, this individual, I'll call hir A, is able-bodied. Zie rarely gets sick, doesn't have a disability, and as far as I know is only chronically short on sleep (not that that's a good thing, either, but that isn't nearly what I have to deal with).
Hint to the world: I don't kid about how much pain I'm in. There's actually a good chance, depending on who I'm talking to, that I understate it. So if I'm telling you I can't do something, it's because I have absolutely no spoons left to do it, or will have to borrow against the rest of the week, or have already gone beyond my limits, or some combination of the above.
To suggest otherwise is to disrespect my autonomy and ability to judge my own body. And it isn't a fucking invitation to play the "my life is harder than yours," card. It's a simple statement of what I'm currently capable of, and I frankly don't give a shit what you've had to do today if you think I'm deliberately trying to elicit that response.
Wednesday, November 23, 2011
I drove home after class yesterday in order to miss the day-before-Thanksgiving traffic. Had two different people try to get rides from me and I ultimately said no to both of them. One was a housemate, and I wish I could have gotten her to the airport, but my anxiety kicked in with a vengeance when I realized it would take me beyond where I usually go, and then driving directions from the airport were sending me up roads in Western MA instead of Central/Eastern, which is the way I usually go, and I had NO knowledge of the other roads or where things like rest stops and gas stations were. Equally, I really didn't need the extra driving time if I backtracked.
The other person was my brother. He wanted a ride after I made it to Mass, so that he could get here yesterday. He called first thing in the morning, and I told him no because I knew I would be ouchy after two plus hours driving. I wasn't wrong. And I ended up driving him this afternoon, instead. And on the way back we hit stop-and-go traffic because of lights (cops and I think construction) that were right off of the connection between I-190 and Rt. 2, so it was backed up several exits back, but cleared up as soon as we passed that.
I had my brother make me a grilled cheese for dinner because I really couldn't stand up long enough to make it. My right knee, my hips, and my lower back all hurt. Well, the lower back is very tense, which I'm only peripherally noticing until I try to stand up for more than two seconds.
I can't drive him back. I'm glad I have a couple days to recover before I drive to school on Sunday, because I lost a lot of spoons thanks to two fairly long drives in two days.
At least the nap I took when I got home cleared up my fatigue? I think if I had tried to stay awake any longer, I would have gotten brain-fogged, too.
ETA: The nap didn't help as much as I thought it did. I was getting tired again within an hour or two of writing this post...and I've taken amitriptylene in the hopes pain levels will go down, even if it was also time to take it again.
Thursday, November 17, 2011
I think it's amazing that students at the university are willing to support the larger community in such a substantial way.
But. There were some things about the event that made me uncomfortable, even resentful. I don't think this is their fault. It's not really anyone's fault. But I heard several times over that part of the purpose of fasting was so that participants experienced in a tiny way what it was like to skip a meal, and be a little hungry. The event organizers never acknowledged that some of their own peers might already know what this is like. I am one of them.
Tuesday, November 15, 2011
I present to you, my daily meds:
[Image description: Six pills, in three groups of two, and two bottles, one small, the other larger.]
|Daily Meds--6 pills, two bottles|
Random details: 1) The nasal spray comes from a different supplier than my last bottle of this particular prescription, and this stuff fucking burns. I stand there for about a minute after using it just holding my nose while the sensation fades. 2) If you are ever tempted to buy the CVS version of the Flintstones complete, don't. It tastes like chalk and is nasty. I bought two bottles when they had a sale, because those two were cheaper than ONE of the Flintstones. I doubt I'll ever finish them. I ended up buying Flintstones after all; those ones I actually look forward to eating because they're yummy (made for kids, you know). 3) Amitriptylene is extremely soporific. The longer I stay awake after taking it, the harder it is to wake up in the morning because I haven't had a full night's sleep. That is, the effect is exaggerated with the addition of the medicine. Also? I wouldn't recommend trying to walk if you've taken a dose and are already extremely tired and are up late. I was not at my most graceful last night. At least I didn't walk into anything? I was definitely weaving and having to rebalance a lot.
Moving on, on any given day I might add tylenol/acetaminophen (but never advil/ibuprofen as it's another NSAID and can't be taken in conjunction with piroxicam/feldene) if I have a headache or if bodily pains aren't quite under control.
However, I also caught a cold recently. It started with a sore throat last Friday afternoon, and by Monday the sore throat was gone but was replaced with general stuffiness and the beginnings of a cough. As a result, I've been taking these as well:
[Image description: A box of Mucinex, three cough drops, and 5 little sample packets.]
|Cold Meds--cough drops, tylenol, decongestants, mucinex|
At any rate, those are the medicines I'm on at the moment. My apologies for the lack of prettiness on the shots; it's way too late to have natural light and the only lights I have in my room create shadows of various kinds, which was making the whole thing look kinda bad to me.
I'm up to six pills a day (+ another 10 or so until this cold is over). I wonder how many more I'll have to add before the year is out?
Edited to add a 3) to the random thoughts list.
Monday, November 14, 2011
Don't get me wrong; I have plenty of things going for me. I'm extremely motivated to do well and learn, and to find a job after college that will allow me to support myself completely independent of my family (though that isn't likely to happen right away). If I don't do those things, I will be struggling for survival. (I mean that in a literal way; as mentioned, my family is poor, so I don't have too many resources to fall back on in the financial department, and if I don't get health insurance, I'm pretty sure I won't be able to make a living because I'll be in too much pain to do so.) I'm also what's called "Gifted" as far as academics go. I was one of those students in high school who didn't even find AP courses terribly difficult, except in the amount of work assigned. College was the first time I ever struggled to pass a class (it was Chemistry, a science I didn't particularly like anyways, but I thought I was pre-med then, and my study skills sucked due to the didn't-need-to-try thing and also the bad school district thing). At any rate, I'm very capable of doing many different kinds of mental work, and greatly enjoy doing them.
But all of these things give me a pretty biased view of life. It's very different from the one held by, say, a woman* I know who is in her 50s, never went to college, manifested fibro-myalgia in her 40s, has three kids, has limited access to and knowledge about the internet, and sees a limited number of people on any given day. Or any other variation on the many parts of a person's identity.
These kinds of things pop out to me when I try to discuss my particular needs with people whom I need to respond to my needs. The woman in the paragraph above is someone I alluded to indirectly in my post about Everywo/man MD; she was one of the people upset when I asked everyone who could read my facebook status to stop offering me unsolicited advice. Her thoughts were that she knew what I was going through, so she should be able to offer this advice without me getting mad at her. Thing is, she doesn't know what I go through. Sure, some of her symptoms are similar to mine, but she doesn't talk to dozens of people each day, and she doesn't attend a college where she has an extremely high chance of running into at least 10 people who genuinely want to know how she's doing each day, and she doesn't have many of those people respond with either oft-repeated (and sometimes useless) advice, or clueless advice. Beyond that, every person has a different response to stress, and so things that work for her are useless or actively harmful to me.
This isn't a one-way exchange, though. I can empathize with other people who have chronic illnesses or disorders, but I don't know everything that goes into their days, and I'm not in their head. I try to be mindful of this when interacting with people. It means I frequently remind myself not to offer advice if someone clearly just wants someone to listen to them, although I can't say that I'm 100% successful at this. Part of my job is offering resources to other students, but I try to frame this in terms of, "these are some of the options I see for you; do any of those sound like a good choice for you? What would you like to do?" (Though not necessarily in that order.) I do this because it's always better if the student feels that he or she has an active role in the decision-making process, and arriving at a solution together builds self-esteem and problem-solving skills. On the other hand, if I tell my peers what to do about their problem, they're far more likely to reject it and feel resentful.
It's all about perspective, and agency.
To bring this back to my original point, the values and strategies I use in my life for assessing and acting on the world around me come from a set of biases that are specific to me. These are not the same values and strategies that someone even from a similar background and in a similar situation will necessarily have, and they come from a very different place from someone with different biases. There are generation, educational, racial, ability, and gender differences, to name but a few, and they all affect worldview.
Edit: What are your perspectives? How do they affect how you view the world? Have situations come up for you where you really noticed how differently someone else views things because of hir perspectives? [Feel free to answer any, all, or none of these, either here or in your own space. I'm just throwing some thoughts out and fishing for responses that might have an impact on either myself or others.]
[Apologies also for tangents/lack of cohesiveness, if they exist. I didn't outline first.]
*Without getting her permission, I'm not going to post either how I know her or her (first) name. If, at some point in the future, I get that permission, I will use it in posts at that time. I may come up with pseudonyms in the meantime, but we'll see.
Wednesday, November 9, 2011
Monday, my boss emailed all residents of my house to tell us that CL&P power was restored to all campus buildings, including ours. He didn't, however, check to make sure we were back to full power. We weren't. The extension part of the building had no electricity, although it did have heat. The main building had everything, I think. Facilities and Physical Plant were in the house on Monday and Tuesday doing something with breakers, and replacing (?) the boiler. By Tuesday afternoon, we had power back, and my temporary roommate and I moved back into the house as fast as possible.
I took a mental health day on Tuesday because I was still stressed about not having my own room back. This morning, I woke up in my room and alone. There was more relief associated with both of those things than I would have believed had I not just spent 10 or 11 days not having one or both. I feel so much happier today, just because of those simple things.
Yesterday I *also* went to see my therapist, when I asked for an urgent care session (I made the appointment before I moved back to my room, although the appointment was after). I talked through just how upset I've been for the past week, and he assured me both that it's completely normal that all the changes in my routine would cause this level of upset, and that my self-advocacy was excellent and really wasn't asking for favors so much as leveling the playing field since most of my peers had power back well before I did. That was the basic thing we talked about anyway. I'm not going to go into more detail on that.
Two other things came up during the session: the doctor who prescribed amitriptylene had called my therapist to discuss how I'm doing on the 10mg dose and whether I would like to raise it. After a short discussion, I decided that yes, I would like that, so last night I took 20 mg. Today? I walked to all my classes, even the one that went after my voice lesson, which normally makes it difficult to go anywhere. I was in mild pain by the end of the day, but it wasn't impeding my ability to do things, which was awesome. I just hope that I don't keep having to up the dosage of the medicine, but even so, it was such an amazing relief not to have to deal with the extra pain.
I said two things. The other was that the class dean had called him to ask about the email I had cc'd her on informing my professors that I would be taking a mental health day and not coming to class. She was on my side, apparently, but unsure why I needed the mental health day. Dr. A told her, without going into specifics, that just not having my room available was an incredible strain, etc. Apparently, a lot of students have been stressed out in different ways by the power outage.
Now that I'm back in my room, I've noticed a number of stress responses have gone away or lessened: my face is no longer extremely oily and extra-pimply; all-around pain has lessened (although a large part of that *is* the medicine); and I'm much happier.
I think, at this point, I may just be able to handle the rest of the semester. So long as nothing else happens. *knock on wood* All the same, I think it would be good idea to start meditating again. It did wonders Monday night when I was upset, and lately it takes a lot to calm me down.
So yeah, in general: huge improvement today as far as physical and mental health go, and I hope to continue with that.
Saturday, November 5, 2011
The cruise control actually helped a lot, and I think getting off campus may have done the rest. I was seeing far more of my friends than I wanted to and was getting extremely anxious and crowded in a tiny room shared with another person. Power still has not come on for parts of campus. There's now heat and power in my own dorm, but I think it's because they hooked it up to a generator, as opposed to the problem being fixed. I was incredibly anxious once they evacuated my building and told us that it would be at least into next week (as in: this coming week) before we would be allowed to live there again. At any rate, I was not happy staying where I was and needed a break, so I left campus. I was also not happy about this being Homecoming/Family weekend, which brings a lot of extra people to campus.
However, yesterday I took a shower in the athletic center locker rooms, which somehow released a lot of the anxiety that was making my chest and other things feel weird. Then I drove to Massachusetts, and felt even better, and took some extra pain killers last night (and the amitriptylene I had forgotten the night before (that is, regular dose, not a double dose)) and conked out.
This morning, I woke up relatively pain-free, which is awesome. Also, if it's a side-effect of sleeping on an air-mattress, then I need to get me one at some point.
I suspect it's a result of stress-relief, though.
Also, note: I have been reading comments, I just haven't had the energy to respond. Thank you for them though!
Wednesday, November 2, 2011
At the health center, I was a walk-in, so I saw a nurse I've never met before. By the time she saw me, the nausea was mostly gone, and she also told me that my sinus pressure isn't yet an infection and declined to give me anything for it because "you're already on a lot of meds." I think I understand a little why a lot of people tell me to exaggerate whatever is wrong with me at the health center; the people who know me take me seriously when I say that I feel like something is wrong, but this woman simply told me what additional things to watch out for (basically, mucus either increased or changed color) and sent me away. To be fair, my symptoms are fairly mild, but when I actually come into the health center for sinus problems, it's usually because it's more than the usual sniffles I get. I don't have a stuffy nose, but I have occasional pain in my jaw, cheeks, and behind my eyes. Gah.
All that, and I didn't ask her to address my increased hip and knee pain today, because I was already taking medicine for it and there wasn't much more I could do. I did end up taking the medical van again after my last class, and then to and from dinner (which is a first, but the dining hall is farther away from where I'm currently staying than it is from my actual residence which still has no power, and bleh, I hurt more). I did end up sending an email tonight to all my professors, the doctor who's been dealing with my latest round of mobility issues, two deans, and my psychologist. Hopefully that'll at least alert folks that something is wrong and they need to be patient with me.
All this and I just feel like I want to whine about going home because I can't, yet. Go home, I mean. Stupid blackout.
Tuesday, November 1, 2011
Sunday, some of us went driving around the main roads of town looking for hot food. It turns out that there was a pizza place with brick ovens open, plus a Price Chopper. We bought enough pizza for dinner for 13 people, which amounted to 4 large pizzas. I went back to my dorm after that because I wanted to, and ended up hanging out with some folks in the program house upstairs (we share a building) once the sun went down. We had four guitars, some percussion, a flute (mine) and voices, so we sang for hours. I started out on flute, but once I obtained tea (someone had a portable gas stove, which I think was technically against the rules, but I'm not complaining, since it warmed us all up) I switched to voice. I was a bit uncomfortable that all of the songs were Christian ones about Jesus, but I could get into some of the spirit of the songs, so I basically picked either wordless harmonies or prayers in Hebrew to sing behind it. (Since I haven't talked about it on this blog yet: I was raised non-religious, and am converting to Judaism; I have very little experience with Christ-centered worship, although I've been to Protestant and Protestant-style (UU) services before. Also, my program house is Interfaith House; upstairs is Light House, which is the Christian house.)
I went to sleep in my own bed on Sunday night, bundled up. I had two pairs of thick socks, leg warmers, long johns, pants, a thermal shirt, a sweatshirt, a bathrobe, gloves, and a hat on, in addition to sleeping under three blankets plus two throw blankets wrapped around my feet and shoulders. This was surprisingly (to me) uncomfortable, although pretty warm. I woke up in time to go to the Continental Breakfast the student center was serving at 9am, and then headed to Hirise, which is an 8-floor apartment building housing mostly juniors and the majority of my friends. I finally knocked on doors after I got bored reading my lit book, and then proceeded to play card games for about four hours--one game of hearts, and then a game of bridge in which two of us were just learning how to play. After that, two of my friends proposed taking my car to one of their parents' house in southern Maine. As power was starting to be restored but not actually working yet, I was happy to oblige, and an hour or so later, four of us were on our way to Maine.
Thankfully, I wasn't driving. I really shouldn't have been on the floor for so long playing games, because my knee and hip were already really hurting by the time we finished, and then I made it worse by going on a 4-hour car ride. Vicodin helped some, but I was badly enough off that it didn't do nearly enough and I was still heavily favoring the leg. The house we went to had three showers, though, and one of them had a bench-like thing inside it, so that I was able to sit down while washing my legs. The shower also relaxed the muscles that were hurt, so I felt a little better afterward (in addition to feeling much cleaner, since I'd been living in my clothing for ~48 hours at that point).
Today, we received the notices from the uni that classes will resume tomorrow despite faculty, staff, and some students still having no power and/or being hours away from campus, so we drove back in the late afternoon, and arrived around 8pm. I took vicodin when I first started getting uncomfortable on the ride, and actually made it all the way back without being in pain. I'm a bit achy tonight, but I'm not in any major discomfort, so that's good. I'm also staying in Hirise again, so I'm even warm. My dorm still has no power at all, and I'm pretty sure almost everyone has ditched the building by now. I know Public Safety is patrolling and checking, but it's too cold and dark to stay there. At least Hirise had emergency lights in the halls the entire time the power was out; the houses just had an hour or so of lighting before the lights went out completely. Another good thing: some traffic lights were back on when we got back to campus. There were lots of accidents because of the lack of lights and some people not treating intersections as four-way stops. This included an intersection of a major two-lane highway that I had to cross either on foot or by car to get to the rest of campus, so I'm extremely glad to see that light, at least, back on. That intersection? Has frequent accidents even with the lights.
So that's most of my blackout story. Who else was affected? How was it?
ETA: Also? Cell phones lost charge really really quickly due to poor to no reception because cell towers were down as well. OTOH, texting and voice mail were the main sources of information to the community at large. I personally couldn't get enough reception to listen to the more detailed voice mail, so the limited word texts telling me to "see email for more information" were extremely frustrating--because guess what else? Internet was down too! Even if we had the power to check it.
Saturday, October 29, 2011
[TW for abusive situations]
Waking up in the morning, I know he's out there, and he's drunk. I go back to sleep until he passes out. I don't want to listen to him today.
Why the fuck can't you let my mother have a little extra cash without whining about it? She pays most of her income towards bills. You obviously have enough extra to get drunk on for two weeks straight, before the money runs out. Why do you have to play these control games?
I love you, you say. The only time all summer you say it to me, and I'm outside beating the rugs that are covered in dirt from your boots. One of many things you do that make me feel like dirt, and I don't even care what you think of me. How much worse for my mother?
How dare you call me your daughter? You adopted me when you married my mother, but then you disappeared for ten years. You are not my father. Step-father, I grant only because you're married to my mother. My real father doesn't treat me or his wife or my sister like shit.
Flashback to January. I sit on the side of the tub, where I'm hiding, and listen to the shouting. Angry over nothing, everything, he shouts that his life is ruined because we called the ambulance this morning when my uncle thought he was having a heart attack. Our mistake. He was only black-out drunk. Nothing wrong here, sir, now go away.
Dear God, please tell me this is the right decision. My hands shake where I hold the cell phone, debating who to call. "If you throw one more thing at me, I'll call the police," she says. That's when I know. I dial 9-1-1. Breathless, I don't hear the operator the first time he asks me what's wrong. I literally do not recall hearing any sound except the shouting and crying. Then I say it. My Dad is drunk and throwing things at my Mom. Yes, the same place the ambulance was called to this morning.
Knock, knock, five minutes later. I leave the bathroom and open the outside door for the nice officer peering in. There's only one step between the doors. One step to safety. My mother stands there, confused. I say I called them. I love you too, he says sarcastically.
When they're gone, I just hug my mother. She's thankful her brother was asleep through the whole thing, or there would be two men going to jail. One for domestic violence, the other for assault. I almost wish he had been awake. Almost.
I'm not staying here anymore, while he's here. We did this when I was a kid, and I hid upstairs on my bed. We rented a house, then. I'm twenty now. I can find somewhere else to go.
You won't have to stay at your father's next time, she tells me. He'll be gone soon. I'm filing divorce papers.
You're so brave, Mom. Thank you for taking care of yourself. I'll be there when you need me.
If you are in an abusive situation, physical or not, you can call the National Domestic Violence Hotline (US & Canada): 1-800-799-SAFE* or check out their site. RAINN is a site particularly for sexual abuse.
*1-800-799-7233 if you're like me and have a full keyboard on your phone.
Saturday, October 22, 2011
Yesterday, about forty people, including me, emailed the mayor asking him to address this. Two hours ago an email arrived in my inbox, sent to the girl in question, the school committee, and the principal, and bcc'ed to those of us who had emailed him. He said, in essence, that there was nothing he could legally do, particularly on short notice. The school rules state: "A full day’s attendance is required in order to participate in any after school activity, game, dance, etc. In extraordinary circumstances that result in an absence from a class or a day of absence, the principal may rule on eligibility for participation in the after school activity. This includes practices, competitions, and extracurricular activities."
It should be noted that the competition is not exactly an extra-curricular activity; it's part of class participation for every member of the marching band except the few color guard students who are not instrumentalists in a different section for the duration of the season.** Marching band is not considered a sport, or anything of that nature. It's a class for which the homework includes practices and performances outside of class.
All that is somewhat beside the point, however: This student is being barred from an activity she's spent three months preparing for, and four years participating in. In her senior year of high school, she's not allowed to go to her last competition as a representative of the band. All because she happened, on a Friday, to take a medicine that had side-effects she couldn't control. She went to school; she just went late, and she didn't feel well when she did.
Now, maybe the medicine will make it impossible for her to participate, anyways, but it's fundamentally unfair to punish someone for doing her best to be responsible in taking care of herself and still attend even part of the school day.
Doubtless there are details I'm missing; I certainly don't know the principal and I haven't asked her why she made that decision. All I'm saying is, I think the student qualifies for the "under extraordinary circumstances" part of that rule, which would have allowed the principal to reverse that decision and allow her to participate in her last competition.
And having had my own medical problems that sometimes present difficulties for full participation in my classes, I don't understand why a medical excuse could not possibly be a valid enough reason to be allowed to participate in an event that happens two days later, as opposed to a football game the same night (which she would also normally be expected to perform at during half-time).
I'm not sure if I'm making sense. I just know that I'm extremely disappointed to hear that this happened in my hometown. I'm further disappointed because I know this girl (her older sister was in my year), and I know how much work and dedication marching band takes. And I know how much that final competition means as a senior.
*whom I don't know. There were at least three principals in the 2.5 years I attended that school, and now apparently there's another.
**That is, the color guard is made up of band members and other students who want to participate but don't play an instrument. The former switch to their instrument during concert band season, the latter just don't have the class during the school day.
Friday, October 21, 2011
At any rate, that's over, and I'm glad for the break in work. I have a lot to catch up on, but I now have the time to do it in, so I should be okay, and I should still be able to get the rest I need for my body to continue healing.
I only have two minor physical annoyances right now: a mouth sore on the inside of my cheek, and a wart that's been treated on my right middle finger. My hip and knee hurt a little, but as long as I pace myself, I do fine.
On the other hand, I received a letter from my health insurance today saying they won't process my claim for physical therapy until I fill out the form they sent, asking how I was injured, etc etc. Except, I already filled out a claims form in which I explicitly stated that it wasn't an accident or injury, but probably a result of a chronic pain condition they should already know about. *facepalm* The woman at the health center who deals with these kinds of things for students is on vacation until Tuesday, so I'll go talk to her next week as soon as I have time. Bleh. I hate insurance processes. I still don't have any paperwork from them saying they processed my claim for seeing a cardiologist last month, either (it's something minor and common, and unrelated to anything but stress, they think; my heart is fine).
Tuesday, October 18, 2011
Tylenol doesn't seem to be doing anything for it. I'm already on piroxicam (aka feldene) and can't take ibuprofen to relieve the swelling. *sigh*
I don't think I'll be getting as much work done tonight as I had expected. Talk about distracting...
ETA a few hours later: My arm FINALLY stopped hurting so much. Yayness.
Wednesday, October 12, 2011
In other news:
- I had a voice lesson today. Made it through all 50 minutes without too much pain, and then realized when I left that my knees were really objecting to standing up for that long. I ended up taking the medical van to and from my last class.
- My sleep pattern has evened out again. I'm no longer having a hard time waking up, although I really wish I had been able to sleep a little longer this morning. However, someone in the neighborhood using what sounded like a heavy, continuous machine caused those plans to change. Constant droning noise that just grated on my nerves.
- Pain levels are relatively under control, all things considered. I only experienced mild discomfort in my last class, and that was mostly in the last 20 minutes or so of the 80 minute lecture.
- I'm doing better mentally, but am also kind of dreading the weekend. We'll see what happens then.
Monday, October 10, 2011
The problem with having a chronic condition is that it takes a toll on my mental health. I've stopped being in so much pain since I started amitriptylene, but my mental health didn't improve at the same time.
Pain causes a very emotional response in me, because I fear it, hate it, and can't function well with it. It's a loss of stability. It's knowing that I can't rely on my body to do what I need or want it to do. It's grief for what I used to be able to do. It's crying for hours because the pain won't stop no matter what I do, and then being exhausted by the emotional outpouring.
When the pain is temporary, has a definite and easily identifiable cause, and lasts only a few days, I can handle it. I might not like it, but I won't fall too far behind in anything in that time span.
When it lasts three weeks, on the other hand, I fall into a danger zone without even realizing it. I neglected to call my school's counseling center at first because I thought I was okay enough to handle it, and that the severe pain was over. Then the pain lasted, and lasted, and lasted. I would be in relatively little pain one day, and then crippling pain the next. I missed classes, I didn't do (still haven't done) reading assignments. I stopped being able to do things I take pride in.
I finally called the counseling center last week, but the psychologist I see didn't have an appointment until tomorrow. I thought I would be okay.
And then the weekend came. With it came relief from pain, but increased emotional distress likely caused by having too much time on my hands to think about it.
Last night, I finally reached out to all of my friends via a private facebook group we use for communication and asked them to check on me constantly. I then emailed three of my most supportive friends and cc'd my class dean and my psychologist on the email. I told them why I needed people to be around me or asking me how I'm doing so often.
I told them I've been having suicidal thoughts, and that none of my coping strategies were working. The coping strategy that has worked was sending that email, and within 15 minutes getting two positive and supportive emails in return. I also had an off-campus friend IMing me while I was awake for the last two nights, which helped with the immediate problems.
I'm better today. Not completely okay, but better.
I had at least six people ask me how I'm doing over lunch. The friends I emailed separately last night are texting me and making plans so that I'm not left alone for too long.
And it turns out that the people I've talked to or ask for help in the last couple of weeks have communicated with each other. A professor called the Dean for Students with Disabilities. That Dean and my Class Dean called my psychologist. One of the doctors I see at the health center noticed the recent visit with someone else that resulted in a new prescription for pain, and called my psychologist and called me. She asked if I wanted to have appointments every other week to keep up with my medical issues. I said yes. All of these people have called or emailed me to see what they can do for me and make suggestions.
I don't know how this works when a student isn't reaching out the way I am, but it's good to see such a response. I suppose that's what ResLife staff members are for: we're supposed to notice the kinds of behavioral changes that indicate a problem like this. Either way, it's amazing that this system is in place here where faculty and staff talk to each other. My friends are equally amazing.
One last note: I had debated putting this out in such a public place, but I decided that it's important to do so. Not just because I needed to sort through the thoughts I've written out here, but also because I know I'm not the only one who has or has had this kind of problem. And it's nothing to be ashamed of, no matter what society might tell us.
If you or someone you know is suicidal or on the edge of being suicidal, ask for help and if you can manage it, keep asking until you get it. There are people out there who want to help you.
http://suicidehotlines.com/ has national and local numbers for suicide hotlines, many of which operate 24/7.
I now have two national numbers programmed into my phone, just in case.
And also my mouth felt disgusting. Needed water, I guess.
I have to be at a physical therapy appointment at 8:15am tomorrow. This is going to be interesting.
On the bright side, I feel much less pain than I did half a week ago.
Sunday, October 9, 2011
I think I'll start taking the meds between 10 and 11pm and see how that goes. It's not like I function well enough to do homework by that point, anyways. (I'm very much a morning and day person. At night, my concentration ability drops rapidly.) I want my mornings back.
Thursday, October 6, 2011
Yesterday, I was in a lot of pain all day and not exactly quiet about it. I complained, I explained to professors and school officials and doctors what was going on, I asked friends to help me out in one capacity or another, and I declined a few invitations because I didn't think I would be up to doing them physically.
Most people were nice and helpful, and did the things I needed them to do so that I could make it through the day or week. Two different deans are now in the loop on the fact that I'm struggling with all of my work because of pain, the doctors know enough to prescribe extra help/advise me on how to proceed, and my professors know I'm not blowing them off for no good reason.
However, I got some responses that were much less helpful, which is what I want to talk about today. Some of these were:
- Are you taking your vitamins? You should also start eating flax seed.
- Have you tried ice and/or heat?
- Why can't you come to X, Y, or Z event? You liked it last time! Okay, well then you should try B to make you feel better.
To start with the second one first, it's not terribly helpful because everyone from my physical therapist to acquaintances have suggested it. I'm already using heat. I haven't tried ice. I might at some point, but can't do it right now. A few people I appreciated new information given. Mostly the same thing gets annoying. I've thought of it, thank you, I'll do it again later. This one doesn't actually bother me too much except when I'm extremely stressed and cranky.
The third reaction was one of the ones that set me off and caused me to make a post I'll quote later. The invitation is okay. Asking why I can't or won't do it, while intrusive, is also okay.
However. Taking the non-opportunity presented and "making sure you're taking care of yourself" by asking if I'm doing B is a very not-helpful response. It assumes that 1) I'm not already doing everything I can to get better (and seriously, why would I not?) and 2) your expertise is greater than mine. This is what I mean by "Everywo/man M.D." Proximity to me does not give anyone leave to offer advice, unless I've already asked for it.
Likewise, me publicly or privately posting or saying that I don't feel well or am in pain (or answering someone's question about how I'm doing) is not an invitation to offer unsolicited advice. I have doctors, thank you. I have also been dealing with this for a while, it's just particularly acute right now.
This was my response to advice last night, while I was sleepy, drugged, and still in pain, and therefore not in the mood to be polite:
Dear all: unless you are a medical professional whom I've asked for advice, please stop offering suggestions for how to fix this. I'm already working with the health center & deans offices & a physical therapist.
Unsolicited advice is starting to piss me off.
I've had some interesting responses. Some people backed off, one person "liked" the status, one person immediately asked if it was directed at hir (it was), and one person responded with, "Then stop constantly posting your ailments?"
That last is the reason I'm writing today.
Dear World: When I am hurting, I am likely to complain whether or not I'm doing something about it, because I hurt, and the alternative is crying. Other people asking me, "have you tried--?" or variations thereof, are ultimately trying to make themselves feel better. If I don't follow the advice, or if I say straight up I'm not going to, they tend to get offended. That's why I say it's about them.
[Edit: Someone pointed out to me that people don't necessarily feel helpless so much as perceive my speaking about having an issue a plea for help. In addition, it's not quite true that I feel helpless. Overwhelmed, certainly, and like I need help. But there are plenty of proactive things I do that actually keep me from feeling helpless. The point stands that telling me what I should do is not generally helpful.]
"You're not feeling well? I'm sorry to hear that. Can I do X to help you? No? What can I do?" And if the answer is nothing, don't be upset. Just asking like that helps. Offering to check on me usually helps. This type of response puts responsibility on the other person to do something, rather than giving me responsibility to do something for the other person. And if the goal is to make me feel better, why is the latter something anyone would want to do?
To sum all this up:
Responses that are helpful and not harmful to me:
- Offering to bring me food
- Offering to help with mobility issues
- Asking how I'm doing and caring enough to listen to the answer
- Checking up on me every once in a while
- Hugs (physical contact in general tends to be awesome)
- Visiting me
- Helping me carry stuff
- Letting me copy notes when I miss class
- Being understanding when I have to cancel plans or decline an invitation
- Riding in the elevator with me
- In general, helping me be included in activities by offering alternatives or resources
- "Have you tried...?"
- "You should..."
- "Why haven't you...?" "Well you should have..."
- "This other person I know has W and zie does..."
- "I want to make sure you're taking care of yourself!"
- "I'm right because I understand what you're going through and have similar problems."
- "It won't hurt you to try..."
Yeah. Don't do the second one, please. Actions that fall in the first category are very welcome, though, and thank you to everyone who has done some variation on those things.
I'm going to make photocopies of the next couple of chapters and carry those to class tomorrow. It *should* make things better than they have been.
I'm also going to continue taking Tylenol all day instead of after I start hurting, since that was the other factor today, and it seems to have helped.
I also talked to my boss today about what he needs from me in order for me to stay on track. He suggested that I do some program planning now, and set five dates, and then I'll have some preliminary work done. I think I'm going to do that this weekend.
Wednesday, October 5, 2011
*The medical van is available in the daytime for students with disabilities or injuries like a broken leg who have permission from the health center. The Ride is a nighttime shuttle service available to all students.
Today I started getting mild pain as I did my morning routine, and then went to my Hebrew class. I think that was what started the problems. I have a heavy textbook for Hebrew, which we work from in class, which means I have to carry it with me. The class is a ~7 minute walk from my house. From the class to lunch is probably 3 minutes. Then 5-6 minutes back to my dorm. I was somewhat okay sitting through class. Lunch was terrible and I finished as fast as I could. Went back to my dorm, started crying.
Pain is extremely difficult for me to deal with. I hate it, I fear it, I can't think around it. I ended up not going to my voice lesson in favor of meeting with one of the doctors at the health center about pain management. I start a low dose of amitriptylene tomorrow. In the meantime, the doc said to take Tylenol regularly for a while to see if it will get me over the hump because that sometimes works better than taking it occasionally. I asked for and received a couple of handfuls of single-dose packets of acetaminophen (my Tylenol bottle is probably going to run out soon...).
I also emailed a couple professors, the Dean for Students with Disabilities and my Class Dean to work out how to hopefully set me on a better track. I'm going to set up a weekly meeting with one of the deans (I haven't quite decided which, but I'm thinking probably my Class Dean) in order to strategize and deal with new things as they come up. I expressed the need to have someone working with me because I can't self-advocate easily when I'm already having trouble keeping up with things, and cry every time I explain things to a new person, to boot.
I'll be doing something about my textbook, although I haven't decided what yet. I've had suggestions to photocopy, get a rolling bag, cut the binding from the textbook and just bring in the pages I need from that, or share with a classmate. I don't think I'll be cutting the binding. I'm horrified by the suggestions, and honestly am not sure how to do such a thing without having to do a lot of hard work. Most likely I'll end up photocopying, even though it's wasteful and will make me run out of ink pretty fast (or coins, if I decide to use the library copy machine).
These are some of the things I'm doing to deal with the pain, but I hate that I have to work so much harder than my friends to do simple things, I hate that I keep spending my weekends doing bedrest, because even though I don't party, I still usually do something on weekends, even if it's just go visit a friend somewhere else (often it's board games).
Right now I'm laying in my bed with my laptop on top of the covers and wishing that I could make my wrist pain go away, too. I'm sleepy partly from crying earlier and partly because I took vicodin to get some relief. I think I'm pretty coherent and able to think, which is not my past experience with it (I once took vicodin and then tried to tutor someone; I would not recommend this). I suspect that the fact that I can still feel what's going on with my knee has something to do with why I'm more clear-headed; the pain is bad enough that the dose I have isn't quite as strong as I need, so it's not affecting my cognitive function. Though I'm not a medical official, so I don't know if that's actually something that happens.
My physical therapist says that this kind of pain shouldn't result from Sjogren's syndrome. Maybe she's right. Maybe my unofficial diagnosis isn't correct. I certainly don't have that many problems with things like dry mouth, which is a common symptom (I have plenty of saliva, etc, although dry eyes are slightly more of a problem). However, I reject the notion that this is my fault from doing something wrong; as far as I can tell, I haven't done anything different except that I'm not in a dance class this semester, and the summer ended so I've started school again. Granted, I'd love agency and to be able to pinpoint something I could change to make this all go away, but...I have a hard time right now with being told X thing you're not doing is wrong and there's no excuse for not doing it. I feel like I'm failing on so many levels and it's hard to combat that feeling. Being told that by two different people within two days (even if they didn't mean it that way), especially two authority figures, is just making things worse.
What I need is to get back on track and not struggle every day to keep up with my studies. What I want is to not be in pain.
I can only take things one little bit at a time, but at least that gets something done when I have a very limited number of spoons to work with.
Monday, October 3, 2011
1. Pain, obviously. I don't like being in pain, and it's starting to make me actively avoid things like stairs, even though it probably wouldn't hurt me any more to walk downstairs than it would to walk on a flat surface. Instead, I take the elevator.
2. Missed classes. Or, a missed class, so far. I skipped my second class last Thursday because I couldn't take the hard chairs, and my morning class, with really cushioned chairs and room to spread out in any direction needed, had been hard to sit through. I also missed everything but the Shabbat Maariv service for Rosh Hashana. Given that this was essentially my first Rosh Hashana (I'm converting, but not Jewish), that really sucked.
3. I'm falling behind on classwork. Not just because it's hard for me to sit at a desk to get work done --true enough, but I sit/lie on my bed instead-- but also because emotional distress causes me to procrastinate and/or be unfocused. I need to catch up, but don't really have the time.
4. Likewise falling behind on my job. As a HM/House Manager (more or less the same thing as an RA/Resident Advisor), I'm responsible for programming, and that hasn't been happening.
I'm contemplating whether or not I'll be able to attend my afternoon class today, since sitting through lunch was hard for me. At the very least, I need to bring a pillow for cushioning, although that earns me strange looks from people who don't know me and questions from those who do.
I have a prescription for physical therapy, and I've been trying to do the exercises the therapist gave me, but that's hard when I start the day out hurting and she told me not to do the exercises if they'll make the pain worse.
I also just made an appointment for next week with the on-campus counseling service. The psychologist I see is very good, and I'm starting to feel like I need to talk things out with someone whose job it is to advocate for me, without having to balance other people's agendas as well. Because when I fall behind on work I know very well I used to be capable of handling, I start to feel like a failure, and that is not a good path to follow.
Saturday, October 1, 2011
My name is Shauna. I'm a university student interested in a variety of topics, but am currently majoring in English and Music. I love many different kinds of arts, including but not limited to photography, music, writing, and dance. On this blog, you'll probably find bits and pieces of projects I'm working on, although this is not primarily an arts blog.
The reason I started this blog is that I want to share and record my experiences with disability, and specifically with Sjogren's syndrome, which is the auto-immune disorder I've tentatively been diagnosed with. Symptoms for me include widespread joint pain, muscle pain, and occasional dry glands (ex: my eyes get really dry) or painfully swollen gland (the parotid gland in my left cheek, twice). I want to make this blog a place to discuss symptoms, treatments, doctors, emotional aspects of disability, and plenty of other things as I think of them.
Unheard Melodies, the title of this blog, is a play on both the fact that I'm a musician and the fact that the disability I have is in the category of "invisible disabilities,"* which are disabilities that are not immediately obvious because one doesn't use a wheelchair, or other visible means of support (or doesn't use it all the time). I actually first heard the phrase "unheard melodies" in my film music class, in which it was a reference to "Unheard Melodies: Narrative Film Music" by Claudia Gorbman. I believe she took the phrase from Shakespeare, but I wouldn't be shocked to discover I'm wrong on that count.
*See also: But you don't LOOK sick!
Anyway, here I am, and hopefully I'm here to stay. I look forward to working on this blog. Thanks for stopping by!
P.S. I would appreciate constructive feedback on any and all aspects of this blog.