"Food Freedom"

I'm sitting here in South Station in Boston waiting for my train home after a doctor's appointment at Mass General. South Station is a great place to people-watch, as are many busy public places in Boston. I'm sitting here with an almost untouched styrofoam container of chicken and broccoli and white rice. My stomach has put up with a fuss with each of the few small bites I've taken so I'm trying to listen to it (my stomach, not the food) and not push food on it when it obviously doesn't want it.

As I sit here people-watching on the little area for eating upstairs I'm struck, as I often am when I'm around people eating, by the kinds of food and quantity of food people are eating. A huge piece of pepperoni pizza, a big mac and fries, a container of fried orange chicken smothered in sweet glaze and fried rice on the side. Okay, so the selection of food here at South Station doesn't particularly give very many healthy options but it says a lot that the lines at McDonald's are much longer than the lines at the salad place, which doesn't seem to draw much of a crowd.

But it's not just the kinds of food people eat or how much they eat, it's that it very clearly brings to my attention how...I hate to say "abnormal" I am but it's what comes to mind. When I choose what I'm going to eat I can't even consider the greasy, cheese covered pizza or the fried chicken strips or the chicken covered in orange glaze. And I can't seriously consider salads because raw veggies will most often cause, nausea, pain, abdominal pressure, and just not be good. Essentially "fast food" is off limits. And it's not me making these decisions, my stomach makes them for me. So ti always amazes me when I see people eating "normally", at least "normally" for Americans. Eating a whole plate without any apparent problems. Going back for seconds...or even thirds. not having to worry if eating this or that will make you want to throw up or curl up in a ball with abdominal pain. "Food Freedom" I'll call it. And of course one can never tell what's going on inside - maybe the people I see eating bacon cheeseburgers and french fries have their own stomach issues. Maybe not. Just an interesting afternoon of people-watching.

Yours,
Penguini

Delicate Balance

Right now I feel like everything is so delicately balanced. I'm tolerating my meds okay and showing slow but noticibile improvements. But I feel like any change could be a gust of wind knocking down this house of cards. And even without changing anything there's no way of knowing when the wind might blow stronger. My foundation is not solid. Meds are strategically placed, added, subtractedx to attempt to avoid side effects and prevent crashes. But they do not give me a solid foundation to build on.

Any thoughts I have about changing meds or trying to do without them altoegether always end with the fear that any change will (or at least could) be too much of a jolt to the delicate balance of things. One med causes nausea and low white cells (at least for me) so other meds are added to prevent that. Headaches require a migraine med at onset as well as a preventative med. And sleeping meds. And meds to keep my gut moving (as much as possible) and prevent bacterial overgrowth. Everything must be balanced and strategically planned to avoid interactions and minimize side effects.

And a lot of the time it feels like we're running a race, me and my doctors, eternally trying to catch up with the other runners and get a step or two ahead of the symptoms and diseases, but it always seems we play catch-up. We can anticipate things to a degree but more often than not it's a matter of trying to catch things early and keep up with new developments and symptoms. Reflux unexpectedly worsens significantly over time so meds are upped, one switched out for a stronger on, but even when one thing gets under control, something else is waiting right there to take its place.

A house of cards. Running a (seemingly) never-ending race. Maybe not the most positive or optimistic metaphors. But they are truthful. They are my life, my body, my thoughts, my day-to-day struggles. The house of cards will not necessarily come tumbling down around me - maybe I'll be lucky and a more solid foundation will form under me, allowing a sturdier house to be built. And the race will not necessarily always leave me one step behind the next thing, issue, problem, symptom, disease. Maybe those issues will diminish and those left will be less surprising and just a little slower so my doctors and I could keep pace with them. But everything is built upon "maybe"s and "what if"s - both the good and the bad. I'm tired of uncertainties, of not being able ot make plans, of never knowing what will happen next. Maybe I should look at it all differently. Maybe it's an opportunity for...something. But there I go with more "maybe"s.

Life is uncertain. You can plan all you want but in the end the plans could all be wiped away. Life is short - seize the day! But what do you do if you can't seize the day? What happens when one seized day results in a week spent in bed or a crash in health that pulls the rug out from under you and throws you into a tailspin? Should you seize the day anyway and suffer the consequences? My wonderful and wise beyond her years friend, Lexie, says, "If you can play, then play. If you need to rest, then rest." How did kids get to be so smart?

Yours,
Penguini

Stupid brain!

I'm sitting here at school, totally wiped out and just feeling like I need to curl up in a ball and sleep for the rest of the week, but I'm here. I'm here early as I usually am to come sit in the office of the student development director (who is so sweet) to infuse my afternoon dose of IV antibiotics. I got here, got myself set up at the table, pulled out my bag of IV stuff, and realized I'd packed everything I needed except the so important alchohol pads. I spent a while rummaging through my backpack and purse (of course it's not the purse I usually have, it's a new one so there hasn't been time for a couple of alcohol pads to get lost in it) and came up with nothing. Even if I had found one pad, one measly little pad, I could have made that work but I found none. So faced with the decision of skipping the afternoon dose (which I so hate to do, especially since I missed a few doses last week while I was out doing stuff in Montreal) or hooking up without cleaning the end of my IV line which would risk infection. I don't know exactly what the chance of infection is in doing that but I'm not chancing it so I'm here with an hour and a half to kill and this will be yet another skipped dose. In total, I've probably only missed 4 or 5 doses since starting it in the middle of September but still, every dose missed could potentially cause problems.

So I'm kicking myself and just generally annoyed and frustrated that I forgot to pack that very basic necessity. And of course I didn't pack my little bag of extra IV supplies that I usually carry in my IV hydration bag because I'm using a different bag. It seems like maybe I wasn't supposed to do this afternoon dose because what are the chances that I wouldn't have even one alcohol pad hanging around in any of my bags! Seriously, most of my bags have at least a few stuck at the bottom of one of the compartments so it's just weird that there aren't any in the bags I happen to have with me. It's amazing to think of how important such a simple thing can be. I bet I'll never make this mistake again (although chances are I will). At least I'll have to stick some extra alcohol pads in all of my bags just in case I run into a similar situation. Oh well, I'll try not to stress over it since there's nothing I can do about it now. And, like I said, maybe I'm just not supposed to do my dose this afternoon. Maybe my body needs the afternoon off to continue recovering from such a tiring week last week. At least I have my homework and computer with me to occupy this extra time before class!

Yours,
Penguini

Fenced In

I have been evaluating my life lately. Taking a look at my current priorities (or what seem to be my priorities) and taking stock of my passions, my dreams and aspirations. To an extent I guess I'm having a mid-life quarter-life crisis. But "crisis" isn't quite right. It's more of a "quarter-life evaluation" with the prospect of re-organization.

I think this kind of evaluation is very important to do at times or else it might turn into a crisis when you realize at 40- or 50-years-old that your life has veered off course and getting back on track will take much more effort and potentially become chaotic. So I'm evaluating things and I'm discovering (or realizing) that my current priorities, while fine and more or less "safe" and "responsible", will not necessarily bring me lasting happiness and help me fulfill my dreams and aspirations.

I'm usually the one to play it safe. I tend to dream big but act cautiously to avoid failure. But sometimes you just have to make a leap, take the plunge, risk failure and possible unhappiness in order to figure out what will bring you happiness.

I am tethered down to some extent by my health, both by the diseases themselves and by the treatments for them. In fact, I'm often literally tethered - to an IV pole or a portable pump in a backpack. I stay as mobile as possible but I am tied down nevertheless. Anytime I think about moving away - to Maine or to Oregon - the question always arises of what I'd do about doctors. And if I'd be able to support myself. And what if I got sicker and was living to far from home to go and be taken care of by my family. I want to dream big and take the leap, but these strings and IV tubing seem to hold me where I am - tied down by the need to stay where I am with my doctors and family to help take care of me.

Yesterday I went to the Montreal Contemporary Art Museum (yes, I'm in Montreal right now) and I saw this photograph that just spoke to me and more or less explained how I feel about my life. It was of a woman sitting on the ground looking out at the world below her (it was on a hill of some sort and shot from behind the woman). And there was a fence in front of her as though she was caged in. That's me - the woman longingly looking out at the world and all its possibilities but I have a fence keeping me from the world. Maybe the fence will dissolve away. Or maybe I'll learn to jump over it or fly out of the cage. The world is waiting there in front of me and one day I'll make the leap and learn to fly.

Yours,
Penguini

Penguins

I'm not sure why I feel such a connection to penguins. I think it dates back to my childhood because once when I was probably 9 or 10 (or maybe younger) I decided to do a report on penguins. I don't remember why I chose penguins of all things (the only other report I remember writing while I was homeschooled was on William Shakespeare) but I vaguely remember doing research and organizing the facts on index cards. But my real fascination with and love of penguins began when I was in my teens and my older sister gave me the nickname "Penguini" (my pen name on this blog).

And now as I sit here in front of the Antarctic part of the Biodome in Montreal, watching the penguins being fed, I find my fascination only growing. Here I am seeing king penguins up close and in person for the first time and marvelling at how differently they act from the other kinds of penguins. The gentoo penguins in this exhibit are full of energy, diving in and out of the water and seeming to show off to the onlookers at times with their fancy swimming. The rockhoppers and macaroni penguins are more laid back but still moving around a bit and...well, hopping on the rocks! And then there are the king penguins. They are the largest in this exhibit (and the biggest I've ever seen, the emporer penguins are the only bigger ones) but they only come up to abou tthe thigh of the man feeding them (maybe 3' tall). They seem calm and peaceful and proud. Standing quietly to one side, only walking around a little bit. They look magestic and like they are the "parents" of the other breeds in the exhibit. My favorite kind of penguins before were the little blue (aka fairy) penguins that live in Australia but I feel a strong pull towards these bigger and much more peaceful ones. I'm envious of the man inside the exhibit feeding them, talking to them (although I can't hear it because the exhibit is encased in glass, being that it's very cold inside the exhibit). I want to have real contact with penguins sometime in my life.

For now I'll just take the chance to sit here with them and marvel at their elegance in the midst of clumsiness. Flightless birds, out of place in the animal kingdom. But it just goes to show that being different can be wonderful. And just because your wings can't bring you inot the sky doesn't mean you won't find a way to fly. The water is their air and in the ocean they can soar.



Yours,
Penguini

Progress

This afternoon while ascending an escalator from the underground part of Montreal to the street level after spending hours slowly working my way through the Montreal Holocaust Memorial (a really amazing museum if you ever get the chance to go) and another hour walking through the Musee D'Archeologie et D'Histoire de Montreal (Museum of Archeology and History of Montreal) I couldn't help but break out into a big grin. It wasn't a funny joke that popped into my mind or a happy memory that I was remembering. It was something so simple. I had managed with a busy afternoon which included quite a bit of walking around (although I took breaks to sit and rest) and I was still standing at the end of it. This is something that probably wouldn't have happened if I was on this trip a few months ago and definitely not if it was a little less than a year ago when I could barely climb a set of stairs. Almost exactly a year ago I was marvelling at very similar progress while on a trip with my dad to Baltimore to attend the same annual conference that has brought us to Montreal. And, not surprisingly, a year ago I was at about the same point of treatment with the same antibiotic as I'm on now. That was when my progress really started to show. It wasn't a huge difference, not night and day, but it was something. I was taking a step in the right direction.

And this is what I was thinking this afternoon as I was walking around the city, seeing the sites, stopping in little shops, generally having a good time. True, I was hooked up to an IV the whole time with the vitamin and mineral enhanced saline and infusion pump tucked into my "day trip" sized L.L. Bean backpack and that no doubt had a lot to do with my energy holding up relatively well throughout the afternoon. And I had to cut the afternoon short to come back to the hotel and hook up to my afternoon dose of IV antibiotics. And my feet hurt...a lot. Sure, I'm feeling worn out and wish I could sleep for a few days but I'm not curled up in the fetal position with pains in my legs and a bad headache. I'm not lying around afraid I'm going to throw up. I'm not falling asleep left and right. I'm not "normal" (I hate to use that term since it's so subjective) as the backpack IV shows. But for this one afternoon I was just another person walking the streets of Montreal. Another tourist pulling out her map every few minutes to make sure she's on the right road and hasn't missed the attraction she's looking for. Another person sitting on the Metro trying to get from poing A to point B.

Every step in the right direction is a mini-victory. Ground gained that could be taken away at any point, I don't know the future, but I know right now. Right now I'm in a beautiful city where I don't understand or speak the major language but has so much to offer. Right now I'm trying to take in everything. Right now I'm able to walk on my own two feet. Right now I'm able to sit down to dinner with my dad. Right now I'm able to marvel at the beautiful buildings and experience everything. Progress can't be measured in numbers or weeks or months. There are no guarantees that even small progress will last long, so savor the moments.

Yours,
Penguini