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 children....like 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.

Thursday, September 12, 2013

On Anglicanism....

Sometimes, I realize that I am Anglican in part because the Church of England has gotten under my skin and soaked down into my bones. Which makes little sense to me, because it would make far more sense for the Southern Baptist church I grew up in to have done so.

A card came in the mail today, one with "Dayspring" imprinted on the envelope (the Christian Hallmark equivalent). And I heard a Charles Wesley couplet in my head, complete with organ music.
"Dayspring from on high be near, Day-star in my heart appear."

Which I needed.

Christ, whose glory fills the skies,
Christ, the true, the only Light,
Sun of Righteousness, arise,
Triumph o’er the shades of night;
Dayspring from on high, be near;
Day-star, in my heart appear.
Dark and cheerless is the morn
Unaccompanied by Thee;
Joyless is the day’s return
Till Thy mercy’s beams I see;
Till they inward light impart,
Glad my eyes, and warm my heart.
Visit then this soul of mine,
Pierce the gloom of sin and grief;
Fill me, Radiancy divine,
Scatter all my unbelief;
More and more Thyself display,
Shining to the perfect day.

Thursday, August 1, 2013

Fire & Rain

I can't remember when I heard the preposterous rumor that James Taylor's song Fire & Rain was about his girlfriend dying in a plane crash, after his friends planned a surprise trip for her to visit. Maybe it was on Snopes? I remember being baffled that anyone would even see a need to dispel such a fantastic story.

But I feel that way because the first time I heard Fire & Rain after Scott died I recognized it as the song pulsing through my blood. It's all there is to say....when your friend commits suicide, when you're wrestling with your own impulses to throw yourself into whatever takes the pain away. When you can't figure out why the rest of the world is going on as if nothing ever happened.

And even all these years later....Fire & Rain is deep underneath my skin. It's what I hear when I slow down enough to hear my heart beat.

I am a survivor, and I will always be surviving.
Scott's suicide.
The horrific car wreck that left family friend "Uncle" Wade in a coma for six months.
The plane crash that killed my mother.
The Baptist church that decided my father's years of sacrifice and ministry weren't good enough for them.
My Crohn's diagnosis.

These things and a thousand other smaller losses will always be there, deep under the surface. Some days they drag me under, and I just hope that the tiny bit I *can* do is enough for the universe...that somewhere, somehow, it matters that I keep getting through things.


Friday, June 14, 2013

Since last post I....

* Had a horrible reaction to 6MP, resulting in severe nausea + vomiting+fever for about a week. Obviously making it not a longterm option.
* Was honored to be a guest at the most lovely and love-filled wedding reception I've ever attended.
* Attended my ten-year high school reunion, and since then, have told my husband entirely too many stories about high school friends.
*Started Humira, and am hoping this will be my "miracle drug." I desperately want my regular life back, and would do almost anything for that.
* Keep finding myself increasingly frustrated at materials produced *for* Crohn's patients that do not include Crohn's patients as authors. Recently read a chapter in a book suggesting that patients find it "enjoyable" to be able to sit still for an afternoon and watch a couple DVDs while receiving  Remicade infusions....and Remicade infusions are a great opportunity to make friends or even meet a future spouse!
(Yes. This is that same unnamed book that says that canned salmon *with* the bones still in it is a great source of calcium, and once you run the bones through a food processor, you won't notice them at all). I understand the need to make the best of  bad situations -I'm the girl who drinks her ginger ale out of a champagne flute during colonoscopy preps. But this goes beyond "rose-colored glasses" into just plain clueless.
* Have continued working on that incomplete from my class. Should anyone out there lurking on the internet happen to be a Stata guru, please get in touch with me. It seems that I'm really not a numbers person (Although, it seems strange and potentially untrue to say that after two graduate-level statistics classes). I do infinitely prefer working with data I've collected myself, preferably with instruments I've designed myself. But then, doesn't everyone?
*Read this book . Hurray for finally finding a resource for homeopathic approaches to Crohn's that doesn't trash-talk modern medicine!
* Have acquired all necessities for dying my hair purple.