Friday, December 23, 2011

Crohn's costs more than money

I'm sure it's not just Crohn's disease...most of the things I'm itemizing are probably things most people with a chronic disease have felt. In all fairness, it's only been four months since I've been diagnosed ("only"? It seems like a lifetime some days)and maybe some of these things will change or become easier, but I can't see that now. And some of the things you can't put a price tag on are the hardest.

1)I have less time with my husband.
Because he's been picking up odd jobs to pay for my meds, I see less of him. And he's more tired when I do see him.

2)I'm never going to feel pretty again.
Seriously, I spend three times as long as I used to getting ready in the morning, just to feel normal. It's not just how I feel-I was going through some photos my husband took from a recent day trip to Charleston and I look...colorless, dull...like a dead fish really. "Like butter spread out over too much toast" as our friend Bilbo Baggins would say. If I'd known this was how things were going to go, I would have just gone ahead and sold my soul for the dream wedding dress, because it would be really nice to at least have memories of feeling like a princess.

3)I'm never going to feel comfortable in my body again.
(Very closely related to #2) My body has both failed me and attacked me...I am living inside my worst enemy.

4)It's yet another reason not to have children.
Both because I'll automatically be considered a high risk pregnancy and because of the possibility of passing the disease on to another generation.I'd have to actually talk to medical providers, but it's likely that I wouldn't even be considered a candidate for a birth center or home birth. You shouldn't breastfeed on the meds I'm presently taking, other Crohn's meds can cause birth defects.

5)My possibilities are limited.
I went from "I can do anything with my life" to "I can do anything...as long as it includes really good group health insurance and there's a gastroenterologist nearby." I'm naively still planning to do my dissertation research in Belize....without thinking through how I'm going to make sure I have meds onhand for six months and what will happen if I have to be Medivaced out. We'll see how that goes...I'll have to have a long talk with a couple medical providers, at least.

6)I have to balance my health and my quality of life.
My doctor says I have to take two giant monster pills three times a day.
According to the books, I shouldn't have my caffeinated tea, my glass of wine, pomegranates, raspberries, strawberries (my favorite!) or anything else with insoluble fiber. This doesn't work for me. Sometimes I choose to actually enjoy my life, and I wind up feeling crummy.

7)I'm less available to my friends and family.
A good chunk of my "free" time this past semester has been spent having blood drawn or in the doctor's office. Then, there's the amount of time and energy I've spent processing and dealing with this emotionally/physically/financially/whatever. Some days it takes a lot more work to make myself be a decent human being than it used to.

Wednesday, December 21, 2011

When everything changed.

Six years ago today...

It was a few days after I'd arrived at my parent's home from college. I carried with me a purple sticky note with Scott's phone number. I missed him, needed to talk to him, sensed that he needed to talk to me. But I had responsibilities- family and picking up my job at the wretched grocery store around the corner. I sold cigarettes and beer, was yelled at by customers and ignored by my managers, my breaks were skipped and I worked late.

Things were tense at home, to say the least. I found myself teary in the bathroom, a razorblade digging into my skin, searching for rest and quiet. Blood flowed, and with it a measure of calm as I cleaned it away and rejoined my hectic family. I tumbled into bed that night exhausted, certain that I was alone and failing at everything. Scott showed up in my dreams that night, and we talked. I don't remember much about that dream...just that we talked, I laughed, I cried, I tried to hold onto him and he faded away, and I woke, calmed, cheered, and with my pillow wet with tears.

Just a few days later I would learn that he had taken his own life that night. I cried until I found myself in that bathroom again, my head aching and at the verge of throwing up. That was only the beginning of feeling a loss that will follow me my whole life. How much difference would that phone call have made - to me, to him? I always understand how this could happen, I will never understand why. Through it all, I carry that dream,keeping it held close with the hope that it was more than a dream. That hope is what makes the rest bearable.

Friday, December 9, 2011

Schism

I am Anglican, and proud to put my roots down into this tradition. It is the branch of the Church where I belong, the heritage that shaped my thoughts and imagination before I knew its name. There are few things more precious to me than those things that are central Anglicanism- Worship focused on meeting Christ in the Eucharist, the via media, a willingness to admit that not all pious beliefs (e.g the Ascension of Mary) are necessary for salvation, and a resistance to splintering over theological nuances.

There are few things that hurt me more than watching Anglicans rage against each other. It is excruciating to me that I can't even use the term "Worldwide Anglican Communion" anymore because so many of us AREN'T in Communion with each other....that we have begun to split hairs in determining who we are willing to break bread with, that we have started attacking each other. I'm not sure where *I* fit in this dizzying landscape; I have friends who are a part of the Continuing Anglican movement, which broke off in the 1960s, friends who are Episcopalian, friends who have found their way to the ACNA, and AMiA friends. They are all good people, good Anglicans, and lovers of Christ, and honestly,once we start teasing out the concerns about hierarchies, tradition, authority, and social justice, I can't tell you which group I agree with more.

Right now, it's my AMiA friends I hurt for most. There's been some ugly news lately:
http://www.standfirminfaith.com/index.php/sf/page/28164
http://treadinggrain.com/2011/mass-resignations-of-amia-bishops-from-rwanda/
http://www.virtueonline.org/portal/modules/news/article.php?storyid=15284

Adding more confusion is that when these bishops left, they apparently didn't take their provinces with them - i.e. life continues on as before for these congregations, beyond the fact that they must make a decision about which Anglican province they're going to be a part of now. Which is a much better place than many congregations found themselves in upon choosing to leave ECUSA.

Even so, it's hard. Pray for your AMiA friends and clergy - that they will know peace, that they will have wisdom, that they will be led by the Holy Spirit during this time of decision. If you don't have AMiA friends, pray for mine.

In Christ there is no East or West,
In him no South or North,
But one great fellowship of love
Throughout the whole wide earth.

In him shall true hearts everywhere
Their high communion find;
His service is the golden cord
Closebinding all mankind.

Join hands ,then brothers of the faith,
Whate'er your race may be!
Who serves my Father as a son
Is surely kin to me.

In Christ now meet both East and West,
In him meet South and North,
All Christly souls are one in him,
Throughout the whole wide earth.


- John Oxenham.

Thursday, December 8, 2011

Grad school doesn't sound so bad.

It's finals week, and I've just uploaded my second-to-last paper. I've spent the majority of my days just writing the past couple weeks and it hit me....

If some ambassador from the future had told ten-year-old me that "One day, when you grow up, you're still going to be in school. You're going to get paid to go to school, and you'll get to study whatever you want. You'll spend most of your time reading and writing about things you choose yourself and think are important" I probably would have thought this was a pretty great deal.

And it is...at least the part of the time when you're not completely malnourished (since you haven't had time to make it to the grocery store) exhausted (since you have bizarre nightmares every time you sleep) and crazy (due to the malnourishment, exhaustion, and stress).

I don't even know what to say about this semester. It's been hard. Starting a marriage, starting a a doctorate, and starting life as someone with an autoimmune disorder- that's too many new beginnings at once. The doctorate and the marriage have been much easier transitions than the autoimmune disorder. It's been hard...and by many standards I haven't performed as you would hope a first year doctoral student would(on the other hand, I have 3 out of 4 committee members lined up, and I've already had one "I don't know where my dissertation is going" meltdown). There have been outstanding moments, as I've rocked a midterm, written a stellar essay on disparities in infant mortality, delivered a dazzling presentation on public health leadership in an emergency, and hammered out the first draft of a manuscript. It's becoming apparent that being sick doesn't mean that I can't do good work. That's the biggest lesson I'm taking away from this semester - in spite of everything, I am still competent. I hate the demands Crohn's makes on me (I know, it's silly that taking medicine three times a day makes me angry,I get unreasonably perturbed every time I choose not to order my favorite sandwich on a whole grain bagel, and there are days I'm convinced that my GI's goal is to make my life miserable). But at the end of the day....I am still me, and I still have every ounce of skill and passion I've always had. This is very good news.