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.

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!

Ouchies

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.

"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.

Blackout

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.

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).

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.

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.

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.