Showing posts from 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-quest…
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…

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 m…

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 "…

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 bo…

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 pa…

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.

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 ni…

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 comin…