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.