Monday, January 25, 2016

On the final months of graduate school

When I was 22, I had three major life goals: To live and work abroad, to teach at the college level, and to get a graduate degree. By the time I was 30, I had accomplished all those things (in ways that were much different and less impressive than I'd envisioned). It's humbling to realize that at 30, you've been given everything you ever wanted out of life and then some. And that getting to that place was harder than I could have imagined. There's a dissertation defense scheduled.
I'm....more terrified than excited right now. Writing, frantically. Crying hysterically over committee comments that don't make sense. Trying to remember the importance of prayer and meditation to center myself, to remember who I am, and why I do this. Nothing about this dissertation- that once felt divinely inspired, providential, perfect- seems to reflect who I am and what I want from life anymore. Everything feels disconnected. It feels like I am the bread scattered on the waters (Ecclesiastes 11:1) and I wonder when, or if, I'll find myself gathered back together again.

Monday, January 18, 2016


Even before I knew I was sick, I tried to be strategic in using my spoons. Sometimes this meant things like eating frozen pizza instead of cooking dinner, or limiting the number of errands I ran in a day, or trying to plan for at least one full day off a week.

Writing a dissertation takes a lot of spoons. As does living in the frozen tundra, in the winter particularly. These are things that are expected, and I don't feel bad for. But I am constantly embarrassed by the number of spoons managing my medical care takes. My GI retired in December of 2013, and I haven't seen a GI (or had any labwork done since). The thought of making a new patient appointment and shuffling  medical records halfway across the country makes me want to cry.
I think I could *almost* handle it, if I didn't have to call and refill my prescription once a month.

Once a month I call my specialty pharmacy's automated line. The autorecording mispronounces my name. I say my birthday for the automated voice, which then asks if I'm calling for my medication (which it also mispronounces). On a good day, this just leaves me cringing. On a day like today....I had to call three times, because the machine listening couldn't understand me. Then I have to speak to a human being. I can't *tell* them exactly what I want ("please ship medication out to me on X date), they have to verify my date of birth, address, how much medication I have on hand (none! I wouldn't be calling you if I didn't have to!), and ask about supplies, tell me that if I have my medication shipped signature required that someone has to be there to sign for it (Really? That's the point. How many people do you know who want a package valued at $1500  just left on their doorstep?). All while seeking to be patient and polite to the poor call center rep who has to do this all day long. 

It inevitably leaves me shaken. And yet, if I don't make these phone calls, my meds don't show up. They're a nonnegotiable priority. So where do I take those spoons away from? I *can't* allocate all my spoons to protecting my health, or finding a job, or finishing my dissertation. I'm not allocating nearly enough spoons to any of those things, but they're all nonnegotiable. So my dissertation generally gets priority, because it will end, and presumably, the more spoons it gets, the fastest it will end. I only hope that I haven't completely destroyed my health before it's finished.

Wednesday, October 28, 2015

So basically....

I am a complete failure in life and have done everything wrong. If my spouse dies or leaves me I will find myself starving under a bridge, since I'm completely unemployable.
How did that happen?

1) I got married.
2) I chose my doctoral program in part based on my desire to live with my spouse the first year we were married.
3) I developed an expensive and debilitating chronic illness, and spent time and money recovering (instead of dying, which really would have been the far more reasonable choice).
4) The faculty member who was my initial adviser left the university, forcing me to choose a committee chair with limited experience with my dissertation topic and methods, and who doesn't have contacts in the areas I work in.
5) My spouse got a job halfway across the country, and I decided that 12 months of long-distance marriage was enough, and I would live with him while during the writing stages of dissertation work.

And there you have it. The death-knell of a promising career in public health. By focusing on getting healthy, I neglected professional service opportunities, and opportunities to build my professional network.  By moving, I removed myself from my professional network and opportunities to continue developing professional and academic experience. I would have been better off chopping off my feet.

And yes, this is coming from the midst of a dissertation-writing phase and is probably more doom and gloom than strictly necessary. But it will take years, possibly a decade or more for me to recover.

Monday, February 17, 2014

When you start too many new things at once....

Old things get dropped. You go a little crazy. You wonder if everything's going to fall apart.
"My" new town has welcomed me here with the worst winter in 20 years. I mostly sit in my home office and make gloomy, movie-inspired observations about the weather.
"The Day After Tomorrow was actually a movie about polar vortexes. Just wait, the lake and river are going to freeze over completely, and giant wolves are going to invade the city and we're going to be evacuated to Mexico."
"Remember in Seven Brides for Seven Brothers when it didn't stop snowing until June?"

There's a document on my computer (and backed up to Dropbox) titled "dissertation proposal". Right now, it's 9 pages long. The intro section has been emailed off  to my adviser.

I have a serious crush on our neighborhood Episcopal church, and I'm waiting to see if it turns into something more serious. This is kind of crazy, since I haven't had a church I'd call my own in nearly five years. But....they've added Spanish to their liturgy, since 40% of the households in their zipcode are Spanish-speaking.  They have copies of the Sunday's gospel available in Polish and Spanish upon request. The people are friendly, and don't glare at visitors. There's a churchmember with hot pink dreadlocks. The prayer requests and church activities show that they're seriously plugged into their neighborhood+ city and aware of injustice around the world. They talk about Jesus and Sin and Redemption and the Resurrection a lot.  In the Prayers of the People, when the bulletin says "add your own requests silently or aloud," people actually add requests out loud. The bulletin is easy to follow, they choose good hymns, they offer Italian classes for I said, it's a major crush. Of course, the rector didn't preach either of the two Sundays we visited, so I feel a bit like I'm waiting for the other shoe to drop. It's the only church we've visited here, it can't possibly be as good as it seems....I'll probably get tied up and held hostage in the parish hall if we go to coffee hour.

Wednesday, January 8, 2014

On blogging

I've been blogging on some platform or another since I started college. That's about 10 1/2 years now, and it's still not something I do well, but it's something I've been doing differently these days.

In 2003, as an isolated and terrified first year undergrad, I was desperately throwing thoughts into the void of the internet, hoping that something would answer back and tell me that I wasn't alone. I made "internet friends" this way- some with whom I still exchange Christmas cards and witty Facebook banter. There's nothing wrong with that (provided that you're careful about who your internet friends are). I also found blogging a venue for communicating more deeply with a handful of friends who were far off or pressed for time. When an unforgettably dear friend committed suicide in 2005, it was my blog community and my books that pulled me through.

Then, I started over. I moved to the MidAtlantic coast  and did an internship. I moved to the Deep South and started graduate school. For the first time in my entire life, in graduate school I wasn't "the weird kid." Things were hard, horribly hard. Three grandparents lost- first to Alzheimer's and then death.  A chronic illness diagnosis, followed by two years of trying to find a treatment plan that worked. Things were often good, too. I made some of the best friends of my life. I worked hard-I wrote, I published, I received enough diplomas to wallpaper a room. I managed to navigate young adulthood with a bit of poise and dignity and to offer others some grace, instead of stumbling through things. Somewhere in this process, blogging stopped being about reaching out and started being about saying things well. I needed to learn how to build my sentences, to practice choosing the right words. Blogging has been an exercise, one that keeps my mind and typing fingers limber and ready for emails to research participants, papers, reports. Blog posts have been mostly read by strangers on the internet, pointed here by google, and quickly passing through.

But it seems that season has ended. Lately  I haven't been able to document small projects or make many carefully crafted observations about life. I've moved again- this time to  the Frozen Northlands- and I have a practicum to complete, a dissertation to write, and an illness to manage. I have no idea how it's all going to go, but I'll gladly invite you to pull up your virtual chair and the warm beverage of your choice to join me.

Thursday, December 12, 2013

So, how do you talk about Crohn's?

People say horrible, inappropriate, awful things. "People" includes doctors- I threw the American Gastroenterology Association's Guide to Crohn's Disease and Ulcerative Colitis across the room at least three times.

People say horrible things because they don't have a clue how to talk about illness. People don't know what it's like.....
...... to hobble a block and a half to class on swollen, arthritic ankles, only  to remove your sandals because your feet are too swollen to fit into them.
........when you're sedated in the exam room, and all you can make out through the fog is that the news isn't good.
.......vomiting for hours in the middle of the night, when your mind can't hold anything besides the pain ripping through your body as it  reacts to the (comparatively low dose!) chemotherapy drug that was supposed to make you better.

There are no words to make people understand these things (The spoon theory helps). So people ask questions-questions about what happens in your disease, about medicines, about diets. I don't know why they ask. Maybe because they care, maybe because they're curious, maybe because they're about to unload a pile of bad advice on you. And then, it's on you as a sick person to figure out what to do with the conversation.

I tend to approach these conversations clinically, referencing epidemiology studies and clinical trials, and delving into molecular mechanisms. I'm realizing this doesn't work- most people don't have degrees in biology and public health, and trying to give people *facts* means that they walk away not understanding very much. Lay people don't understand "inflammatory cytokines" or "allostatic load."

So, what are the right answers?
If the question is about food sensitivities/ what can you eat, I think the best answer I've found so far  is "Yes, lots of people with IBD have food sensitivities, and it can definitely make symptoms worse. But the immune system malfunctions in a way that's much more similar to Rheumatoid Arthritis, Lupus and Ankylosing Spondylitis." (This could potentially backfire into a discussion of "what the heck goes on in those other things I've never heard of?) but it at least gets across that you're not just lactose/gluten intolerant.

I don't know about the other questions, honestly. I'm going to try harder to figure it out. I'm tired of how people respond instantly to the word "cancer" but are clueless about other chronic illnesses that can be just as serious and just as devastating. I want that to change. So I'm stuck figuring this out, a conversation at a time.

Thursday, December 5, 2013

So very much has happened since the last time I've posted here. While I certainly don't have time for a "real" post, I do intend to keep this blog active, so the best and only thing to do at the moment is to tell a cute kitten story.

My kitten, Sage, is closing in on two now. He was adopted from an animal rescue last Christmas, J and my gift to each other.  He's a teenage punk and a charmer- we went to the cardiologist today for his annual checkup, and three different ladies (the receptionist, the vet tech, and a stranger in the waiting room) all commented on how handsome he is. He launched into an all-out comedy routine for the vet tech, and insisted on saying goodbye to the receptionist before we left.  Yes, somehow or other, I, the extreme introvert, acquired the world's most extroverted cat.

About two nights ago, I was brushing my teeth and getting ready to take a shower. A very large cockroach suddenly ran out from under the sink, as often happens in the Deep South. Sage darted after the bug, and pounced on him in the hallway, trapping the cockroach under one of his gigantic fluffy paws. He let the bug up and let it run into my bedroom....where he quickly followed, and then reappeared, carrying the cockroach in his mouth. Rather than eat the cockroach (like my friends say their cats do!) he carried it into the bathtub, where he let it loose, and then chased the cockroach around the shower curtain and the tub. I gave up on showering, until he appeared in another room about fifteen minutes later. Then I headed back to the bathroom, pulled back the curtain and found the cockroach. I cautiously reached for it with a piece of tissue and it moved. My beloved Sagecat had left me a live cockroach in the shower to deal with on my own, and didn't understand what the heck I was so indignant about. The cockroach wasn't alive for very long after that.