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.

Friday, May 10, 2013

About books

A friend of mine just published her second book . Unlike her first book, I didn't wait patiently for the semester to be over before opening it. Also unlike her first book, didn't devour it in one sitting, but let it wash over me for almost a week. The thing is, I have a low tolerance level for thrillers/page turners. I might pick up a book once because I've heard it's a good story....but I can't love a book unless I can live in it.
And what brought me almost to tears about Story's End is that it's a book that can be, and will be lived in, and I know what that can mean to a reader.

I don't often talk candidly about my growing up...and it's quite enough to just say that it was lonely, excruciatingly hard, and a tremendous amount of it happened in books. Two series of books in particular....the Lord of the Rings Trilogy and the Emily books . I'm pretty sure that over the years I've spent hundreds, if not thousands of hours in these books. My parents, my step-mom in particular, would tell you this was wasted time. I'd argue otherwise.

I learned from Lord of the Rings that even in the worst of times,we can still do what is good and right, and that somehow, our best is enough. That the smallest and most insignificant things and people matter, and that laughter is worth much.That "Courage is found in unlikely places." And I learned who I wanted to be...I keep a passage marked in The Two Towers where Sam Gamgee expresses his fondness for Lady Galadriel:

"The Lady of Lorien! Galadriel!" cried Sam. You should see her, indeed you should, sir. I am only a hobbit, and gardening's my job at home, sir, if you understand me, and I'm not much good at poetry. . . .But I wish I culd make a song about her. Beautiful she is, sir! Lovely! Sometimes like a great tree in flower, sometimes like a white daffadowndilly, small and slender like. Hard as di'monds, soft as moonlight. Warm as sunlight, cold as frost in the stars. Proud and far off as a snow-mountain, and as merry as any lass I ever saw with daisies in her hair in springtime. But that's a lot o'nonsense, and all wide of my mark."

At the same time, Emily taught me about who I was. Alongside Emily, I wrestled with words and thoughts and sentences, working endless things out in my journal that were unsafe for human ears or eyes. Unlike Emily, I was deeply suicidal throughout most of my teens and early 20s, and was terrified of someone coming across my scrawls after my untimely death, so every couple of years my  thoughts and scribblings were dumped unceremoniously into a smelly garbage can (until, one day 2006ish, I couldn't anymore- but that's another story). Emily let me know that it was okay to miss my dead parent desperately and silently, Emily showed me it was alright to be lonely, that not everyone had to love you, and to be grateful for love and beauty wherever I found them.Emily, like me, was ambitious, and her passion directed her life. Emily was smart, and she ignored Great-Aunt Nancy's advice to "hide her brains and show her ankles."

Somehow or other, I've grown up now. Like the Hobbits, I've been to far-off places and come home. Like dear Samwise Gamgee and Cousin Jimmy and Emily, I fuss over my garden. And like Emily and her Aunts I bake cookies and make jam (though I haven't learned to knit yet).  I am here, alive, safe, smart and healthy because of my books. And Marissa's books will grant other children that same safe passage to adulthood - these books will be lived in, they will wrap warmly around young readers and carry them through the hard times in their lives. Her characters will be loved and they will show people the way forward in their darkest hours. Una, Peter, Snow, Sam the Cat, Adelaide Thornhill, Indy, Effie Lou, Kai and all the rest will walk with someone through the worst parts of her life.

Wednesday, April 10, 2013

Why this space has stayed empty

I always appreciate that this space is here, waiting for me to practice crafting a sentence, building an argument, sketching a scene. It's been months since I've taken advantage of it. The combination of poor health and a heavy workload have led to a brutal few months- I spent most of February feeling like I was careening towards dropping out of school, hospitalization,divorce, or all of the above. Thankfully, it's April now, and I'm changing medications, taking an incomplete in a class, and changing academic advisers. Hopefully this will be enough to move things to a better place. And maybe one day I won't wake up tired.

Tuesday, March 5, 2013

Little cat is fine.

So, since last time...little Sage has a congenital heart defect. His mitral valve flaps are too long. But he has great heart function,and may never have problems with this. I'm typing one-handed right now...he's sleeping in my lap with his two right paws thrown over my left arm, like it's a teddy bear. And as soon as I managed that sentence, he released my hand and let it go. He's still here, belly up, head tucked under my ribcage, the epitome of trust and innocence. I'm constantly amazed at how his fluffy sweetness seems to sooth parts of my heart that I didn't even realize were hurting. It's funny...part of why I wanted a cat was for a trial run at keeping another creature alive, before deciding whether or not to be a parent. But the things that are most endearing about little Sage are the things that are least child-like. His fluffy soft fur and pink nose and funny white whiskers. The way he snuggles under my elbow while I'm typing papers, his nimble feline acrobatics. And most of all, the way he tries to look after things he carefully checks us to make sure we're all right when we come home on stormy rainy days (and the way he tried to warm me up that day I did come home soaking wet)....the way he curls up next to me when I climb into bed with a headache or sick stomach. It's funny how much you can love a little creature who doesn't count for much in anyone's measures of what's important. But he constantly brings love and laughter wherever he goes, and is quick to forgive and ever-ready to assume the best about people (well, except for that one vet tech who horribly annoys us both). Traits that are grand and worthy of emulating, wherever they're seen.

Thursday, January 10, 2013

I have a cat with a heart murmur, and I'm a nervous wreck

Advent and Christmas were a rush of adventures, giving and receiving time and love. I'm sure I'll write more about these things soon. But that title is a good summary of what is weighing on me most right now.

I am cliche'. I am both Christian and bleeding heart liberal, shaken by any and all suffering and pain in the world, and doubly so by that of the innocent. I'm a vegetarian*, a graduate student in public health, and for years, I have been wanting to adopt an adult cat from a shelter. Because animals wind up in shelters through no fault of their own- because someone gave Susie a bunny for Easter because it was cute, and they didn't realize that bunny was going to eat and poop and chew through electrical wires. Shelters are hard places to live. You're usually trapped in a cage under harsh lights, or crowded into a room with 15 other animals. Strangers are in and out at all hours, picking you up and judging you, and new animals with germs are constantly coming in and making you sick. The well-meaning staff are stretched thin and have neither the time nor skills to ensure that you are healthy and cared for. Kittens and puppies are cute, and often quickly snatched up. But adults tend to languish.

Anyway. J and I have discussed this for as long as we've been married, partly because he frequently travels for conferences/research collaboration meetings/etc, leaving me alone for weeks at a time in a too-big apartment.We finally agreed that it was time, and decided that this pet adoption would be our Christmas gift to each other. The small, Southern city I live in has two no-kill shelters that charge a reasonable adoption fee that covers shots, spay/neuter and microchip expenses - we ventured to one of these almost on a whim on our first Saturday back in town. And there he was, in a room full of wire cat condos holding squirmy kittens and bored or terrified grown up cats: our little black&white cat with giant green-gold eyes and funny whiskers. He fearlessly introduced himself, and promptly informed us that we were perfect and he'd be going home with us. A few minutes later we were signing papers granting us possession of a living being (and wondering "who on earth names a cat 'Sweetums'?"). We made it home, J and I shaking a little bit at how fast and simple the process was.  Soon, our little cat was dubbed "Sage". Little Sage explored the house, and eventually took up residence under our bed. Six days after being adopted he managed to launch himself into our bed at midnight, and since then he's spent most of his time purring in our laps.

2012-12-29 17.01.39

On day 9 we managed to get little Sage to the vet. (Mostly because the ear infection the shelter staff had informed us was "probably just stress" wasn't clearing up, and was making him claw at his poor ears til he yowled). The vet told us that the poor little guy had earmites, bacteria, and yeast in his ears (see previous comments about shelters). And then, he pulled out his stethoscope and discovered a heart murmur. All of a sudden we were talking about hypertrophic cardiomyopathy and the possibility of coming home one day to find our sweet happy cat dead or paralyzed. Within a couple hours we had a cardiologist appointment scheduled for Monday. Not cheap...but we've got to find out what we're dealing with. There's a chance that little Sage is fine, and there's a chance he's very sick. Which is not an easy thing, since we planned on spending around 15 years with this little guy. But regardless, he's been rescued- for however short or long he's ours. And he's better off here, in our peaceful apartment, where he's getting at least some decent vet care and lots of snuggles.

* I know there are conscientious meat eaters. My own personal choice to be a vegetarian is about many things - health, environmental impact, food source sustainability, and animal maltreatment by the major meat producers in this country. For now, for me, this is the best way to respond to these concerns.  I don't proselytize about eating veg, but I do about eating local.