Saturday, December 24, 2011

Update re: finger

Well, it seems that at least part of my problem with my index finger was spending too much time on the computer. Or, that's why it wasn't going away. I spent most of yesterday baking, and very little of it on the computer, and guess what? It didn't bother me much yesterday, and I woke up with it mostly fine this morning. I'm going to take that as a win.

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


[TW pain]

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?

At my mother's house

[General TW for talk of uncomfortable family stuff, violation of personal space, and some discussion of medical symptoms]

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

And now for something completely different (food related)

My mother is making a beef meal for our family holiday get-together, and wants me to come up with a side-dish I can eat with it. I can't remember what she said she was making, other than that it was beef instead of ham, which I don't like and can't eat.

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 said a while ago that I don't experience much in the way of dry mouth and dry eyes. Lately those, along with my skin, have been proving me wrong.

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

Crises and problem solving

I've been mostly quiet for a while. There's a reason for this, beyond being almost to finals. I'm not going to go into specifics, except to say that my family life is turbulent for a number of reasons, and several of them came up this week. I'm okay. I have a lot of thinking to do, but I'm okay, and I should continue to be okay even as the semester ends.

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


Things learned today:
  • 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.]
The rain and headache may be related, but I'm not sure.

Otherwise, I'm just very busy because it's the last week of classes before finals.

Tuesday, November 29, 2011

Patience, and some history

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

Quick Update

If you read either of the last two entries, you know that I did a lot of driving last week to get myself and my brother to my mom's house for Thanksgiving (US). I did have time to sufficiently recover before driving back to school yesterday.

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


Trigger warning for ableist bullshit. Also, disclaimer: "you" used in this post is a general "you" that isn't addressed specifically to you, the reader of this blog.

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.

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.
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.

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.

Have a good fucking night. You know what? Have a good night. Have a great night. I hope it's one you enjoy so that maybe you'll be nicer to people tomorrow.

Wednesday, November 23, 2011


I have nothing pretty or thoughtful to say today.

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

Hunger and Homelessness Awareness Week

My university hosted its fifth annual Fast-a-Thon this past Tuesday to raise money for the local food pantry, as part of Hunger and Homelessness Awareness Week. Basically how it works, is students donate part of their meal plans (how much is up to them), and theoretically fast for the day, and then break their fast with a banquet featuring food from a local restaurant and speeches from various people. Last year, they raised over $14,000, which was more than half of the food pantry's budget for the year. This year, the total was at least $13,000, though that was before last count.

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

Current medicines

At some point, not too many years ago, the only medicine I took every day was Claritin, for allergies. Oh boy, has that changed.

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
These medicines include: an antihistamine (since my allergies never went away) and omeprazole, an antacid, in the morning, to be taken well before food; piroxicam, a non-steroidal anti-inflammatory drug or NSAID, and Flintstones multivitamins to be taken with food, usually at lunch but sometimes earlier; an eyedrop bottle, which I use maybe once a week; a nasal spray, which I use right before bed; and amitriptylene, which I try to take around 10pm because it makes waking up difficult.

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
The health center has a lot of free samples they give out, usually in the form of a "cold care pack" unless asked for something specific. This includes medi-phenyl aka phenylephrine, tylenol, and cough drops. I've been using everything but the Tylenol. I've also been coughing enough that I wanted to get something specifically for a cough. This afternoon I called the health center to ask for cough medicine, and after a bit of back and forth involving the nurse and the nurse practitioner looking up drug interactions, they determined that the best thing would be Mucinex. Apparently there's a "class D" (don't ask; I don't know) warning against taking anything DM with amitriptylene--something about the drugs being too similar. As a result, they told me not to take Robitussin DM, which is what I would normally take for a cough. They also offered to refill an inhaler they gave me last year when I got sick, but my lungs don't feel "tight" this time as they did last time, so I declined. (The tightness was "something like bronchitis; apparently the bronchial tubes weren't expanding enough to allow me to breathe. That was fun when I went in a hot, glass building for a meeting...ended up wheezing in the hallway and having my class dean and half a dozen other people very concerned about me.)

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

An (very long) Observation

I have a pretty specific perspective on life in general and how I treat my disability in particular. By specific, I don't mean extremely detailed; I mean formed from my positions in life. I am young, a woman, attending a small residential liberal arts college in New England, poor, a feminist, and plenty of other things besides. As a college student, I talk to tens of people on most days of the week. As a house manager, I'm expected to be responsible and to be a resource for my residents and the community at large. I developed this disability (or maybe it would just be recognized?) in my freshman year of college, and was quickly diagnosed with Sjogren's Syndrome. I went through elementary school with epilepsy, but in middle and high school I was pretty "normal" health-wise. Unlike epilepsy, for which I had a "long shot" at outgrowing it (whatever that means; I haven't had a seizure in over ten years), Sjogren's syndrome doesn't seem too likely to just go away, and so I'm suddenly looking at a lifetime of dealing with this particular form of disability.

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

Power completely restored!

So. That thing that happened. I've already posted about the blackout. This past weekend, the university put my building on partial generator power so that emergency systems, heat, and some lights came back online. I believe many of my residents and the Light house residents upstairs chose to come back at that point. I didn't. I didn't want to sleep where I didn't have power enough to see anything after ~5:30pm. I also went to Massachusetts, as mentioned in my last blog post, and my anxiety levels dropped some. My friends are awesome, and they have two adorable kitties, and they also gave me use of the spare bedroom/craft room, which meant I wasn't sleeping in the same room as someone else. I unfortunately couldn't let the cats in without supervision due to issues with one of them possibly spraying, and the possibility of either of them digging claws into the air mattress. Still, I spent a lot of time hugging cats and convincing them to purr.

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

Feeling Better

This morning I woke up without my hip killing me for the first time in about a week. I'm not entirely sure why that is, since I drove the nearly two hours to a friend's house in Massachusetts yesterday. Of course, I used cruise control for I-84, which is about 35 miles during which I have nothing better to do because it's one highway at one speed.

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

"Post"-blackout pain

Well, I woke up this morning with my hip and knee both hurting, and my day hasn't improved significantly since then. I was okay with walking to class until I picked up my backpack (which really didn't have *that* much weight to it) and realized that I was very not okay walking to class. I called the medical van, and just barely made it to class on time. During class I started feeling nauseated enough that the scents from the guys on either side of me were making me feel worse. I walked to lunch after class, forced enough down that I knew I could at least take my meds, and then walked to the health center. I had to go around an enormous tree branch that was in the middle of the path to the health center. I'm surprised they haven't gotten to that one yet, because it's in the center of the CFA, as opposed to on, say Washington Street where I'm pretty sure the sidewalks are completely impassable.

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


So. There was a nor'easter over the weekend. An early nor'easter with snow. So many trees still had leaves that it caused massive amounts of damage across the entire northeast from Pennsylvania up to ~New Hampshire, possibly Maine. Connecticut had unprecedented damage and power loss, such that my entire campus had no power all the way through Monday night. The first power outages hit my house around 6:30 pm Saturday, so I relocated, and then the dorm I was in, along with the rest of the campus and city, lost power just after midnight. On the bright side, I finished both episodes of Buffy that I was watching each time the power went out, because the videos had finished streaming before internet went down. And then I shut my laptop off and was using that to charge cell phones.

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

Domestic Violence Awareness Month

For the Domestic Violence Awareness Month Blog Carnival.

[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

On School Policies and Medical Problems

Today I am sad for a girl from my high school. She is a member of the high school marching and concert band. Yesterday I heard via social networking that the principal of the school* had told her she can not perform in the final band show of the year, a major competition, because she was absent for part of the school day on Friday due to a new medication making her dizzy.

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

Fall Break

Well, I'm more or less on Fall Break, the first of two my uni has (the other being over US Thanksgiving). I have a four day weekend in which to rest and catch up on work. This morning I had my first midterm, in Hebrew, and I think I actually managed to do well on it. I had a lot of vocabulary I had to learn fairly last minute, but the biggest problem was really spelling the words. However, the test didn't ask me to write a lot of words but had things like lists in which to cross out the word that doesn't fit, verb conjugations, fill-in-the-pronoun or preposition, and answering questions. This as opposed to the quizzes which are on the vocab and require being able to spell, which was made harder as soon as we learned the last 10 letters, several of which have similar sounds or functions to the first 12 letters (there are two 't' letters, for example).

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

Flu Shot

This is my third year getting a flu shot. I guess I can be thankful that I somehow forgot how much it hurts since the last time, because OW OW OW OW. My arm is swollen and ache-y from my shoulder to my elbow (and a little down my wrist).

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

New (?) symptom and general updatery

Today, I've been having problems with my left foot. It keeps hurting the way my hands sometimes do, except that it's been a shooting pain while walking or leaving my foot in a specific position (apparently). I've also generally been having problems with my feet hurting when I move them into weird or different positions, usually involving something that should merely be a stretch. For example, I sort of spun on the front of my right foot in order to turn around, and suddenly there was pain through my big toe and area around it. I don't really know what's causing this, or why it's happening now.

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.
That's all for now. I think I'll try to update at least twice weekly, despite the frequency of posts so far.

Monday, October 10, 2011

Mental Health and Support Systems

[trigger warning: mental health issues, discussion of suicide]

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. 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.


I took the amitriptylene at 10pm last night, and set my alarm for 8:15 (didn't go to bed until after midnight). The first couple of times my alarm went off, I felt like I was moving through cotton to get out of bed and hit snooze. It took 25 minutes or so (it's a cell phone alarm that goes off every five minutes), but I finally stopped feeling like that after the third or fourth iteration. I even managed to get up in time to take a shower and such before leaving for class.

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

New medicine

I started a new medicine Friday night: amitriptylene 10mg. The doctor said within a couple of weeks it should start to control the pain. For now, I'm taking it right before I go to sleep, which seems to not be the best decision when I go to bed at 1am because I'm up talking to a friend in a different time zone, or watching Buffy until 2am because one of my housemates hosts social gatherings on Friday nights and I can hear it loud and clear. I've had a really hard time getting up the past two mornings. Now, granted, I messed up my sleeping pattern a bit last week, and slept really badly Thursday night (and took a nap Friday afternoon). However, my usual pattern is waking up between 8 and 9 whether or not I have class or it's a weekend, so it's unusual for me to reset my clock to 10am and still not be able to get up.

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

Chronic Illness, and Everywo/man M.D.

This post inspired in part by Invisible Illness Challenge 23.

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.
(Actually, trying to think of them, it occurs to me that there weren't that many different reactions in this group, although the second one was repeated a lot.)

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.

They feel helpless,They know I'm in pain, they want to do something, so they tell me what to do. [If your response to that is "huh?" then you've begun to see the problem.]

[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.]

Guess what! I feel a little helpless too, already, in addition to grumpy and overwhelmed by external and internal demands. If I can't meet yours, it makes me feel bad, like I've failed again, and that is why I'm requesting that people not give me advice if I haven't asked for it. It makes me feel worse.

Better response:
"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
  • Etc.
Responses that are not helpful and likely to upset me:
  • "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..."
Do you see how there's substance in one and not the other? How the first list is an active way to help me, and the second is a passive way to make me help myself (in the way the other person thinks is best)?

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.

Some good news

Well, it seems that my theory about my Hebrew textbook causing problems has some merit. I did not have the class Tuesday, and I felt fine. I did not have the class today, and made it to all my classes (didn't feel fine because I started feeling ill halfway through my last class, but the only pain problem is my knee).

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

Out for the count

Yesterday was a better day in terms of pain levels than I've had in a while. I think it was a result of my physical therapist putting me on electrical stimulation and a heating pad for twenty minutes. For the rest of the day I managed pretty well, aside from some ongoing emotional problems resulting mostly from being in pain all the time and not getting things accomplished (see my last post). It wasn't until after dinner that I was noticing enough discomfort to take the medical van or the Ride.* I didn't. I walked home. I even managed to get a solid night's sleep without being awoken or kept awake due to pain or discomfort.

*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


I've been dealing with a flare-up of hip and knee pain since a couple of weeks ago when I spent far too much time on my feet (~3 or 4 hours in a row). This has had quite a few unfortunate effects:

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


Hello and welcome!

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.