Just another lap

Well my non existent audience, I have continued my pattern of abandoning you all. All this sleeping and doing very little has made me much too… distracted?… to write. Excuses aside, I have had a lovely break so far.

We will start with the obligatory update. After much lost patience, I finally have my dates for Cincinnati. Much later than I was hoping, and annoyingly close to my original scope dates in Denver. Mama says I have to cancel that, but Im still wondering. I cant change any treatment until they see what is going on. All the other specialists I was waiting to see are on hold it seems, as well. Im pretty frustrated.
As another interesting tidbit, my GJ tube got ripped out in my sleep, thanks to my restless sleeping. Balloon burst, tube came out about 6 inches, and got all coiled up in mah tummy. Not comfortable. My options for getting it changed out arent the greatest, and Im not really tolerating g feeds anyways, so I have a g button holding the stoma for now. Still debating what I want to do.

On a better note… despite the sick and the exhausted I have enjoyed my break. It has been really nice to relax extensively, hang out with  friends and family, and climb rope 🙂 I head back to school at the end of the week. Im hoping my teachers this semester are understanding and that I am able to maintain the classes I need to get done.

I will write again soon, my non-people.

———–

“For last years words belong to last years language, and next years words await another voice” -TS Eliot

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Home Again, Home Again.

As Im sure you have inferred, my non existant audience, I am back home this weekend for Thanksgiving. I once again do not really have many updates for you, besides my last couple appointments and the like. Ill also probably wind up going through the basic run down of being thankful, etc, before the end, because thats why Im home, right? Thats your warning.

We’ll go through the medical updates first.
Last week I had my appointments. They were much less than I would have hoped.
At first I thought neuro would be really helpful. I was in their office for close to 2.5 hours, and they were doing all sorts of in office tests (writing, drawing, block stacking, etc). He took a careful history, asked lots of questions… Then after a while, the real doctor came in. As it turns out, the person I spent almost all the time with was a student, not an actual doctor. I wouldnt have minded so much if they had decided to keep looking, isntead of writing me off and telling me my symptoms were a side effect of depression.

This is a great point for a tangent/rant thing. Subject: depression and chronic illnesses.
Many people with chronic illness, at one point or another, have issues with depression. We do recognize this. We also know that often times, during times of depression, symptoms can get worse, including symptoms of the chronic illness and the symptoms more associated with depression. In fact many of us have a pretty good idea of when we are depressed, what kind of symptom exacerbation it is causing, and have ways to cope. This DOES NOT MEAN that depression is the CAUSE of the symptoms, nor is it the cause of the chronic illness itself. To quote one of the psychiatrists I have talked to: “Given your genes and your current situation, I would not believe you if you told me you werent at all depressed”. (He also told me that having a chronic illness is a mourning experience. I like that one too.)

Back on subject… When I walked into that appointment, I was actually feeling like I was in the best state I had been in for a while, mental health wise. I was feeling optimistic that these doctors could help give me some answers, was feeling okay with some of the potential tests I was expecting them to order, wasnt stressing… No, I didnt feel well at all, but it was managable. I was even honest about my family history as well as my own, and told them that I was feeling really stable at that moment in time. Apparently, my word meant very little to them, as I looked like I was really “down”.
That was what really upset me. Im used to getting the “Well, at least you look healthy!” ‘s, and the double takes with my record with new doctors, not them telling me that my worries and issues are “just depression” because of my history and how I looked… especially since I assumed I wasnt looking too bad, given my decently good mood. Maybe that doctor just isnt used to meeting with co morbid patients? Isnt used to being around someone who spends every day feeling ill? I dont know. Im trying not to let it get to me.

And yet another tangent. Maybe this is just me, but especially if I dont know you that well, dont base your judgement off of how I look. Yes, sometimes when I look miserable, I am miserable, and look content and actually am, but not always. Its better to not even comment on appearances, its not something I have much control over, and even the best intentions can wind up feeling sour. I dont want to know how well I look when I feel horrible and fought to even leave bed that morning, nor do I want to know when I did manage to get out but look horrible. </rant>

Anyway. There were a few upsides to that appointment, one of which being a confirmation that I need to be re-evaluated by cardio. During my appointment, my collected heart rates were as follows: 87, 110, 75, 60, 105. All in similar positions, within a two hour period. They also wonder if the tingling is vascular. Hopefully that gets going before long.

GI was not especially helpful, but it did help me figure out what I would be doing, doctor wise. First, the good news. I will never have to take entocort again! wooooooohooo! Besides that, it sounds like this dude will now be my ‘local’ GI, and he wants to work with Cinci for my care. As it turns out, he even has experience with EGE/EC! Thats craziness right there. The less good news. Were not really doing anything right now for the motility issues. My GES came back on the very very slow end of normal this time around (doesnt negate the GP diagnosis, but it does show that my stomach is functional at times… a very good thing). Because of this and the pain I have been having with J feeds, he thinks I have intestinal involvement, meaning a true prokinetic that would target the stomach wouldnt do too much. We both know my tract is inflamed right now, and because of the entocort superfail, we still cant tell if its from eos or not. So, its back to the waiting game.

———-

That signals the end of the medical crap.

It has been really nice to be home the last few days. I have gotten better at balancing my time between climbing family and blood family, it seems. While I did spend 4 hours climbing, followed by 4 hours of sitting in Rock Bottom on wednesday, I spent the evening after that hangin out with my brothers (we had a pokemon stadium tournament. I put up a valiant effort, but did not find myself victorious. Stupid Tangela.)
I love being able to spend time with both, and it does, as always, make me wish I had more time. But I guess thats the case for everything. I am trying to appreciate the time I do have, and know it wont be the last.
This year, despite everything that is becoming more difficult, I have a lot to be thankful for. I am so lucky to have a loving, supportive family that understands how I am….. for great friends who are essentially family, who I love and love being with when I can be….. for having doctors who believe what I am saying and who are fighting for me….. for the support groups and Eos Community I am so glad to be apart of….. for what health I do have, and for being here….. for climbing….. for being able to study what I love….. for all the opportunities I have been given so far….. for comfy beds and warm jackets…… even you my non-existant audience. I am thankful for my halfway decent writing abilities helping me spread awareness and share my experience in hopes to help someone, anyone.

I take off early tomorrow morning. Hopefully there will be a post before too long… I mean, I will be procrastinating hard core in the next couple weeks.

Until then….

What I see in Nature is a magnificent structure that we can comprehend only very imperfectly, and that must fill a thinking person with a feeling of “humility.” This is a genuinely religious feeling that has nothing to do with mysticism.” -Einstein

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One of those Kitchen Table days…

My dear non-existant audience, I do not want to write about corn any longer. This is procrastination at its finest.

I really have nothing that exciting to write about. I have basically spent the last week studying, sleeping, or working. That said, we put on a pretty good FNBS this Friday, if I do say so myself. Not quite the turn out of last comp, but we had over 50 competitors and even pulled off a Dyno comp (without busting any of the new crap holds!). It was a long couple days getting it together… 20 hours of work on my part, but was a good time none the less.

In other news, appointments are upon me. (You didnt really think I would make it even half way through a post without talking about medical crap, did you?) I see neuro on thursday and GI on friday. Thanks to my lovely mother, I get to stay in a hotel in Denver overnight so that I dont have to drive back and forth. Saves my lovely car some miles, too. Im a little nervous about the neuro appointment, just because it is new territory for me. Im trying not to think about it that much though. I figure I just have to speak up for myself and make sure things get looked into. As far as GI, thats old news. Interested to see what the next step is, since I so obviously failed the entocort attempt.

I also have another point of nerves… Im considering audtioning for the Vagina Monologues here at school… While not a subject I normally would want to be on stage talking about, I really do miss regular old Neuqua Monologue show, and unless we set up another poetry slam, Im guessing there wont be another opportunity to be on stage for a while. The flip side, though, is that I know the director already, form Beginning Acting. Shes a total jerk face (for jerk face, read long list of expletives). I really dislike her. A lot. She told me, because I was asking to make up work from when I was sick, that I was the disgrace of the Honors Program. I definitely spent time walking near the Fine Arts building when I had my NG tube in hopes of making her feel guilty (I do have scruples, I promise… but she was really mean).

And another tangent to that, I really want to get writing again. I started having some good words walking to my genetics exam last week. I was going to be studying on the bus, but upon opening my backpack, I didnt find my notebook, but rather 2 quick draws, an ATC, and a grigri. Awesome for studying. Anyway! The only downside is that I didnt have time to get anything written down, as I was walking to an exam, and what I did come up with was rather cliche… one of those “This is for…” sort of poems, but in a medical sort of sense. Some lines like: This is for the ones I can talk to when I dont know when to be upset, laugh, or cry because I was told for the fifth time today “At least you look healthy…” And they not only know exactly how I feel, but know exactly what to say, spinning a text my way just saying “We so pretty” Smiley face. The ones I can have discussions with about withholding my urges to tell everyone on facebook complaining of their cold or their flu to just suck it up, because theyll go back to their normal healthy lives days after, while we sit here in our normal state of pain and discomfort, For the support group mom’s I ask advice like Id ask my own mother, the kids I think of as siblings, the strongest siblings I have ever had, the family I find in those who understand….
Not that good, I know. Maybe something will come to me. Maybe it wont. The brain fog has been heavy lately, and Im hoping cooler temps will start getting it to dissipate.

I dont know why writing is so helpful in sorting things out. I should really probably be going to bed about now, so that I wont die tomorrow trying to get to Plant Bio… but Im compelled to stay. Id love to get into some philosophical discussion with myself and really get my brain moving, but I honestly dont know how much I can do.

Ill end with a story.

One of the best nights I have ever had was between my Junior and Senior years of high school. I was on my annual trip to Vermont, to visit one of my best friends. I have an amazing skill of having best friends that live vast distances from me… I guess my being so resistant to change helps me keep friends close in those circumstances. It just so happened that my other best friend was on a cross country college visiting road trip during my visit, and wound up visiting University of Vermont about half way through my stay. After a university tour in the morning, we wound up, all three of us, my two best friends who had never met, walking along the lake. That night we went to a Lake Monsters baseball game. Afterwards, we went back to have a bonfire, but realized we were still too close to people to see the stars like we wanted too. We wound up driving to an elementary school and playing on the playground, talking, listening to music, star gazing, and absorbing every moment of feeling so alive. We wound up laying across the top of the monkey bars, watching for shooting stars and soaking up the Milky Way. The field across from us was full of lightning bugs, and I was so content with my place in the universe. I felt so loved, so comfortable, so happy in a place I had never been, with people I cannot separate myself from.
Then, wham. I went to get off the monkey bars by dropping down backwards, hanging by my knees. As it turns out, there was a big metal bar right where my head wound up. Even through the couple tears I unwittingly shed, I still felt the love, though.

I always have a hard time going back to memories like that. It either winds up giving me a reason to keep pushing, or gets me stuck in a cycle of nostalgia, wishing to leave now and to sit back in those times where I felt so alive and so okay with that. Back when, even though I was sick, I could focus on school or sports or my latest social anxieties, when I wasnt so responsible for myself, when everything wasnt in my hands, when I had a safety net around me constantly, instead of having a 1000 mile drop. Sometimes I just want to go back to when I wasnt so aware.

 

—–

“If someone told me that I could live my life again free of depression provided I was willing to give up the gifts depression has given me–the depth of awareness, the expanded consciousness, the increased sensitivity, the awareness of limitation, the tenderness of love, the meaning of friendship, the apreciation of life, the joy of a passionate heart–I would say, ‘This is a Faustian bargain! Give me my depressions. Let the darkness descend. But do not take away the gifts that depression, with the help of some unseen hand, has dredged up from the deep ocean of my soul and strewn along the shores of my life. I can endure darkness if I must; but I cannot live without these gifts. I cannot live without my soul.”” -Elkins

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Once Again Waiting

So once again, my non-existant audience, I have neglected you. I apologize seven times. (anyone catch that refrence??)

Anyways, Ill go through general updates, because who wouldnt want to know more about my assorted maladies?

New GI Appointment: As noted in the last post, I had an appointment with a brand new, adult (scary) GI. The GI isnt scary, for the record, just the adult aspect… I like childrens hospitals still. Haters gonna hate. Anyway! He was very nice. He listened to what I was saying, and what I wanted, and came up with some good ideas. He is even willing to look into intestinal motility stuff, as it seems that may be a problem. It was pretty rushed, but he walked me to scheduling and explained everything he wanted done. I was then scheduled for a switch to a GJ tube, a GES, and a lactulose test. GJ switch was long due to their mistake, and wasnt especially pleasant (note to self, I am highly tolerant of versed and fentanyl), but it got done. Adjusting to feeds has been a slow process thus far, and likely will be for a while… especially since I keep forgetting to hook up to them. GES was okay. Had to eat oatmeal, isntead of the eggs they insisted on, and surprise surprise, it came out normal. I know it happens, even when there are motility problems, but still not reassuring.

EGID GI: As usual, correspondence is slow. Im clear to start amitryptaline, but am to watch my symptoms closely. Dont expect to hear from them til end of this week/beginning of next.

Neuro: Dont have my appointment for another monthish.. little less than that now (woohoo!). Had some new, somewhat alarming symptoms starting about a week ago, mama told me to go to the ER, so I did. They didnt see anything to crazy, so did labs, told me to see a specialist, and did a brain MRI. I now own pictures of my brain.

Cardio: Wasnt so happy with this appointment. Redid the EKG, and it looked alright, and they reconfirmed the POTS diagnosis… besides that they pretty much wrote me off and told me they couldnt help me. They also decided not to rule out myopathy, despite a chance of it (small chance, but a chance). Getting scheduled to see my dad’s cardiologist at home, may get bumped and just see someone in Cinci (speaking of…)

New stuff!: So Ill go back a little. My little sister (11) has been having EGID like symptoms. My mom took her to through the general process in Chi, but they came up with about nothing, so she put in a call to our old buddies down at CCED (Cincinatti Center for Eosinophilic Disorders). As a preface, I went to Cinci when I was 12, after I super failed the top 8 elimination diet and my local GI decided that I was too complex a case to handle. I was treated by Dr. P for about 6 years, though treatment is a lofty word here. He was adamant I treat with flovent, and I didnt like that idea so much. Flovent has never helped me and I react funny to it. So, after my appointment at the beginning of Sr. Year, I decided to look elsewhere. Checked out Childrens Memorial Eos Clinic, but they told me that EGE/EC dont exist.. yeah, okay. So then I waited til I decided where I was going to school, and thats how I would up going to Denver clinic. I like them a lot, but they havent been especially helpful in my case, once they got me the feeding tube—
Back on topic. Dr P and my mom wound up talking about me at the appointment as well. Both my sister and I will be tested for mitochondrial disease. He is very confident that I have it, thinks my sister may too. Cinci is apparently just starting to recognize and see it. Favorite quote regarding it and my case: “As doctors, we have to look for horses, not zebras. More than likely, people have the more common ailment. On the other hand, when it looks like a duck, and quacks like a duck…”
Based on my mom’s discussion with him, it sounds like they will be running a ton of tests on me, and really try to understand the full spectrum of what is going on, in some part because I am an interesting case for them, given my issues and my long history with them already. Im pateintly waiting for them to call about scheduling (patient is not working so well). Its looking like Ill be there in January, unless he decides to open up something in December. Im expecting January… Missing a week of classes being at a hospital across the country is a great way to make a good impression on new professors, right? (Yet another update… May be going to Cleavland clinic for testing… Dr P called a collegue there, so they could do fresh muscle biopsy. Scheduling once those two chat)

 

Thats the jist of the medical stuff. In other news, school has been tough this semester. I wound up withdrawing from two classes to make the load a little more manageable, given all the class Ive missed for appointments. I have my schedule for next semester set up, though, and Im nerding out a bit. Im going to take ornithology, principles of animal behavior, gen ecology, then either an honors class or a social science. The three that are set, though, are just T/R classes, which makes it even better.

Hmm what else… I dont think Ive posted this part, but I was promoted to Sr. Route Setter and am a Competition Manager at the climbing wall at school 🙂 Its pretty cool. I enjoy it for the most part. The whole Sr. Setter deal is amusing, too, as I am very much the youngest of the group.

Despite the whole no energy, new symptoms, not feeling well thing, life isnt too bad. Its seeming like its officially winter here in Laridise, and Im very happy in my puffy jacket. Maybe my optimism is stemming from a pretty okay day, the prospect of answers… Hopefully it sticks around.

….

“My theory has always been, that if we are to dream, the flatteries of hope are as cheap, and pleasanter, than the gloom of despair.” -Thomas Jefferson

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Frustration

Its 7:30 pm and I am utterly exhausted. Ive been ready to go back to bed since about 20 minutes after I got up. I walked to the bus, pausing multiple times as I retched, wondering if it would be better if I could just vomit. Sat through classes because I knew I had to be there. Ate a little more later, knowing it would wind up the same way.
Im not that sick. I dont look like Im sick. I hear it most days. But Im miserable. I cant keep this going how its going, eating and feeling horrible, not eating and feeling even more weak, being exhausted the whole time, being scared of the new symptoms that are popping up… or not, because maybe Im just insane…. Im hitting a dead end, and I dont know where Ill turn if things dont improve.

Heres to hoping tomorrows appointment is a step in the right direction.

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Restarting

School + Exhaustion =/= Much time for writing.

This is going to be a medical post mostly, as a warning to you, my non existant audience. Its been on my mind pretty heavily and I left that on a cliff hanger last time. Not that it was a cliffhanger… It cant be unless I publish the post, right?
Anyways, I didnt get a chance to write about my much anticipated last trip to Denver for my week of appointments, so Ill go through a quick recap.

Monday: Rheumatologist. He was open and honest, thought he couldnt help me since my pain is unexplained to this point. Ordered labs for Lupus and Rheumatoid to be sure, both were negative.
Tuesday: GI consult, Dietician. Had a long talk with Dr. F, and we agreed that things werent working right, decided to watch the vision and headache issues. He noticed my decline and ordered an abdominal ultrasound and Upper GI Barium study with follow through. Dietician, who is one of my favorite doctors, was also concerned. Was down 15 lbs from the last time I saw them. She wanted to try new formulas to see if that would help, planned to switch to EO28 via tube at how ever much I could handle.
Wednesday: Upper and Lower scopes. Despite my worries, I did manage to get cleaned out. Didnt move much that day though, and it took just pushing miralax/gatorade though my tube as much as I could. Scope went quickly, showed furrowing and 10-13 eos per hpf through esophagus, rest of the system looked alright. Took a very long time to wake up, rough time after. I hadnt had anesthesia issues for a long while until that scope. I had a headache, was dizzy, and just felt wrong, and had a crappy nurse who took out my IV immediatly which inhibited my ability to get stronger pain meds. I tried to leave about 2 hours after waking up, but broke down crying while waiting for our car, which is very unlike me, and my mom walked me back inside. Layed in the dark til the Outpatient surgery center was closing, made it home and went back to sleep.
Thursday: Esophageal Manometry, Psychiatrist. Easily the worst test I have experienced. First, it was in the CU adult hospital- scary stuff. It was also the day after my scope, so my throat was wicked sore. Heres the play by play of that one: Nurse walked me back, sat on the stretcher in a closet like room. She got out a tonne (yes, metric) of lidocane and shot it into my nose. It burned so badly, and was so nasty, started gagging at this point. Put another tonne of lube on the manometry tube, which made the whole nasuea thing ten times worse. Then she realized that I was right when I told her that she needed to use the other nostril, the one I had to use for my NG because of scar tissue/inflamation in the other one. No lidocane this time, just gobs of lube. So gross. Where the NG was not at all bad in insertion due to cold water and a not-recently-biopsied-esophagus, this was horrible. The tube is bigger, has a metal bit at the end, and you are only allowed saline water. I started throwing up half way through that. She told me, essentially, to suck it up, so we continued. Finally got it calibrated, but was then told I could only swallow once every 30 seconds, and it had to be with a swallow of her nasty asortment of things, mostly saline. I made it through 3 sips before the wretching was too bad, and we called my mom back. I hadnt had that much anything, let alone saline water, in my stomach for a long time before that. They tried venting my tube while it continued, but it was a no go. We got 3 saline, 5 plain water, and 1 nasty-goo. Apparently the doctor wasnt happy about this (new gi who was supposed to help with the motility issues) and he, to this day, has not called me back, made contact, anything about the tests or my issues. On top of it all? He didnt even listen to my symptoms. I dont have esophageal motility issues worth treating. My issues are stomach and intestines. A while after was the psychiatrist appointment. I have met with him before and like him a lot. The whole thing, though, was him trying to convince me to go on an antidepressant. I had a lot to think about.
Friday: Abdominal Ultrasound and Upper GI with Follow Through. Abdominal Ultrasound was no big deal. Upper GI was more of a process. Luckily, I didnt have to drink the barium, but they did need a lot more than my stomach could handle. They would give me a few syringes, and then have me lie on my left side because I was so nauseated and that helps the stomach empty. They xrayed every 30 minutes for the first three hours, then every 45 for the remainder of the time. The test should have taken 3 hours or so… mine was 5 and a half… and I was lying down, on my left side, the whole time… and they had to use this paddle thing with a ball on the end to push my intestines through my abs. They say my motility isnt off? Weird, right? Anway, it didnt reveal much either.

A week later, we get a call and disucss the situation with Dr. F. He decides that at this time, I should just start the antidepressant and see if that helps decrease symtoms enough to be functional. This is kind of where the current issues begin. I had to get an EKG before I started that.

Current Re-Cap: I got my EKG about two weeks into school. Got it off to Denver, and after a while, I got an email saying there were “non-lethal abnormalities” that were going to be re-examined by a cardio. After many weeks of waiting, they decided it would be okay start if I watched it. Talked to my mom, however, and we decided to get it checked out first, due to a bad family history of heart issues. That appointment is in two weeks.
I also am having issues with my vision. Its not so much blurryness, but more the feeling when you close your eyes and push on them and you get the light show behind your eyelids… thats in the front of my visual field. Weird no? Seeing a second eye doctor in a week. Im guessing it will lead to neuro, though, since my last eye exam didnt look bad (just slight increase in my perscription for close up stuff). Dizziness, headache, and balance/coordination issues might all be working together. Or maybe Im just being over dramatic. I always worry about that…
I see a motility GI in a week, as well. He is new, and I found him through one of the GP facebook support groups. I hope he is good… Im going crazy. Right now, Im alternating between eating the food I should eat (potato, tomato, rice) and being exhausted and losing weight or eat whatever I want and feel horrible, but at least maintain weight. For some reason, I can definitely tolerate more “real food” than my food.. maybe because I like it more, or feel like I need to get all I can while Im cheating… Eos definitely develops unhealthy food habits… but either way, Im not tolerating formula, and neither of my options are healthy.
The last parts are just annoying. No matter what I do, I am totally exhausted. Im sleeping 8+ hours a night, and am barely making it through the day. My energy levels dont change if I take more synthroid, eat more, sleep more… just always exhasution. Its making school really, really difficult, and I seem to be missing a fair amount from that or appointments. My muscles are weaker too. Where I would have used to climbed for a solid 3 hours in the gym, or 10 pitches outside, I max out at an hour inside, maybe 7 routes, or 3 pitches outside, and then my legs are wobbling the whole way down the descent. When did I get so weak?

So thats where things stand now, medically speaking. Ill try to post later tonight about the rest of things, because who wants to read about medical stuff anyway, right? Life isnt all about the medical melodramas I seem to get pulled into (though not as badly as some of my friends), but sometimes its hard to focus on anything else.

“Happiness is different from pleasure. Happiness has something to do with struggling and enduring and accomplishing.” -Sheehan

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Perpetual Motion

True Date: August 29
Its been about 2 months since I last posted. Well not really 2 months, but quite a long time. I will also note my failure in this post, because Im going on memory on what I last rambled about. Anyway, Im now settled back in Laramie entering my second week of classes.

Where did I leave off… I know it was the beginning of July, so Ill go from there. Basically, shortly after the last post, it was decided that I did need to go home early to rest and get in to see my doctors earlier than originally planned. I enjoyed my last couple weeks of watching my favorite little kid, relaxing, and even rock climbing a little. Unfortunatly, I was feeling pretty miserably and had little to no energy. I got it together enough to make it home, though.

My two weeks at home were nice, too. I was either visiting with friends, sitting around the climbing gym, or sleeping. The energy didnt come back just because I got home. It was enough time to feel at home, though, and it recharged my batteries so that I can get through the next semester here. My mom got very worried with my levels of fatigue, however, and it was only made worse through the week of appointments that followed.

I once again forgot to finish this post. School is so stressful. Tis what it is, Ill get another going soon!

“Every composer knows the anguish and despair occasioned by forgetting ideas which one had no time to write down. ” -Berlioz

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