Thursday, November 20, 2008

Saving

I'm an obsessive saver.  I always have been.  Back in 4-H days when I received my goldmine of a couple hundred dollars for a few months work, I would squirrel away the majority in hopes of buying an aquarium, a goat, or a hypothetical trip to Canada.  (Seriously, when I was 10, I bought an aquarium  and stand, and when I was 14 I bought a baby goat---no trip to Canada though)

Not working for months ought to have changed the way I save.  I had a difficult time pulling cash out of my savings account to buy my Wii last spring (great investment) and my first impulse as I deposit checks from my minimal tutoring jobs is to replenish my savings account.

I know that, because I have incredibly supportive parents, I'm experiencing illness and my early 20's through different eyes than most. I know that the majority of the nation  is having a hard time meeting basic needs, much less thinking about  saving, but my compulsive saving habit has been eating away at me, urging me to save...

So, I thought of what I can save.  Spoons, obviously. (The spoon theory? ringing  any bells? no? ok) But really, I can store up memories. 

Saving memories?  How lame is that!

No, really.  When I have the energy, I'm saving up memories and stories. When I was sick, my poor parents heard me tell the same story over and over again.  "Did I tell you that _____ called?  She's doing ______ now.  Yeah." (insert bored grunts of agreement here)
  Life outside my bedroom is full of interesting stories---good memories like having a delicious dinner out with my mom and not-so-good memories like the student who was just not into tutoring today.   I want to have good stories to share about this very strange period in my life.

I don't have the energy for my old crazy adventures, and I don't have oodles of money to replenish my savings account or splurge for Christmas, but I can store up memories, saving them for a rainy day or perhaps a "splurge" of a book or paper down the road.

Sunday, November 16, 2008

Tutoring

I've talked about writing a book about my experiences tutoring incredibly spoiled children and children who live in situations that make me cry.  Like most Americans, I will talk about writing a book, but never actually accomplish it. I will go into detail, but never sit down and outline it.  But maybe I should start.  I think I need a place to vent about the ridiculousness that I see and feel whenever I walk into a new house.  

I'm assuming that it's my health that's keeping me from being the whirlwind I once was, but a part of me is worried that I'll never be strong enough to be back in a full classroom again.  I enjoy tutoring, not just for the social perspective, but also because it's invigorating to watch a kid "get it." 

Taking classes, tutoring a bit, and not student teaching is the right choice.  The correct choice.  The smart choice.  It doesn't matter how I or anyone else express it---it was a really hard choice.  I want to be as energetic and strong as I was  before---I want to be an amazing teacher, not only a tutor.

Thursday, November 6, 2008

Electric Blankets

I love that it's cold enough for an electric blanket.  Southern California is not known for cool weather, but man do I love it when I can pretend that it really is autumn.

Monday, November 3, 2008

Attitude

Today, I'm an odd mix between optimistic and down about the not-so-fun parts of MCD.   Mostly, it's the fear that even though I feel good today, I might not tomorrow.  I'm glad I'm feeling better, dropping weight rapidly and all of that, but I'm worried about registering for next semester.  Can I handle teaching 5 days a week and going to class Tuesday and Wednesday?  Should I just take the classes?  Just teach?  This time last year, being sick was the farthest thing from my mind...a big part of me is just scared about starting and not being able to finish.  Or starting and finishing poorly....

Saturday, November 1, 2008

Today, I threw a party

 My nephrologist gave me hope a few months ago.  He said that if I could make it to November without relapsing, I would be in "good shape." So I planned a party on facebook.  It was originally going to be a virtual party, but I succumbed to the peer pressure and, with an encouraging doctor's visit, planned a real life party. 

  I don't know how I'll remember today.  I doubt that I'll remember the bouts of tiredness that threatened to knock me down or my frustration over not being able to cut the celery perfectly even.  Instead, I'll remember Stephen playing our out-of-tune piano with a mastery that made me cry, and Dave having the courage to follow his performance and lead the group in a few of my favorite hymns.  Will I remember watching my dog think about attacking Josh's pit bull or giggling over old pictures in my high school scrapbook? I hope I never forget the image of my niece in her "Yo-Ho" Pirate costume or my Dad and Dale setting out a spread of delicious food.  I doubt that I'll remember the taste of real ice cream with real whipped cream, but I will remember the hugs and kind words, the sweet notes written for my scrapbook to encourage me on tough days and remind me where I've been.  

It was an eclectic group, some new friends, many old.  Friends with stories to swap and friends with new stories to write.  Friends that walked with me through the hardest moments of the past year.  Erin, who took care of me when some punk kid hit my car; Kristin, who drove over 3 hours to come and drive away the fear when I was in the hospital; Rita, who sat with me for hours when I didn't have the strength to stand; Annajoy, who visited and called faithfully;  All the rest,  who called, texted, sent encouraging notes or facebook messages, and seemed happy to see me, even when I was grumpy or tired beyond belief. 

I say that "I" threw a party, but it's really not true.  My family threw this party--partly to celebrate that I had something to look forward to these long months, but also to celebrate that I lived. And I live because of them---because they fed me, and helped me with everything, and because, even when it was scariest, they helped me remember who really brings us through the darkest times.  My parents, my sister,  and my dear brother-in-law have gone above and beyond what I would have expected,  but they gave freely even when I had nothing to offer.  Their love mirrors the grace I find in Christ Jesus--who gave me my life and everything in it and asks for nothing in return.

Every so often, I'm reminded that there were moments in the last year, health problems, that could have killed me.  I'm glad my friends all met to celebrate me at something other than a funeral. I hope that someday (A long, long way down the road) my funeral will have the same feeling of celebration.

Thursday, October 30, 2008

Minimal Changes

See!  It's funny because it's a pun!  It's what I'm doing with my life and it's the name of my disease! Get it?....Um... I thought it was funny.....

I'm not going anywhere on Halloween.  *GASP*  Wait, no.  I'm the same person who, at 21 and 22, chose to stay home and watch the Disney Channel instead of partying on New Year's.  Skipping a party is really a minimal, a small, an easy change.

I drink water all the time now.  Not only are the kids who collect bottles for recycling making a mint off of me, but the makers of Smart Water ought to be thrilled that my doctor recommend I drink distilled water with electrolytes...I'm helping keep them in business.  I've practically renounced caffeine and don't see the point in alcohol anymore.  Once again, these small changes aren't really a big deal to me. I enjoy the rare cup of coffee or cocoa and I think I'll always love a cup of tea on a good day, but my life is a far cry from having 64 oz of caffeinated beverages before noon.  I can easily join the ranks of teetotalers who have good reasons for abstaining from the deliciousness of Guinness or Bailey's shakes. Too many people on my message board bemoan brief relapses after a few drinks, and the alcoholism in my family makes me unsure I'd be able to keep from indulging.  So, now I can pull the kidney disease card.

I don't know why today  I'm focusing on the "minimal" instead of the "change." Maybe it's because the last 8 months I've spent a lot of time wishing the changes didn't have to happen.  I've never really liked change.  But there are a million little changes I'm making, and most of them are healthy lifestyle choices that I should have made years ago (Can anyone say sleeping at least 8 hours a night?).  The changes to my life and personality have been hard on my family and friends, but I hope that even they can see that these 'minimal changes' (I know, I'm killing the already bad pun) aren't all that bad

Wednesday, October 29, 2008

Life back to normal?

And how.   I have a cold.  The first cold I've had since, oh, 8 months ago, right about the time I was diagnosed with a rather odd kidney disease. 

And why is that normal, you may ask?  Well, see, I've had colds or bronchitis just about every year since I ventured into the world, and I know how to deal with them.  I have a very specific list of things that make me feel good when I have a cold, and I'm finding that my kidneys play a very small part in my cold.  It's great to get to think about something else other than Glomular Filtration Rates or Albumin ratios.

My list of how to get through a cold.
1) Sleeping:  Sleeping is something I never seemed to have time for.  In junior high and high school, when I felt a cold coming on, I'd sleep from 4 pm on Friday to around noon on Saturday.  In college and especially, in grad school, I never seemed to have enough time for sleep. One of the perks of spending another semester recovering is my access to sleep. 

2) Water/Juice:  My kidneys have shown me how important hydration is in the grand scheme of things,  but having a cold reminds me of water's joys all over again.  If it wasn't 90 degrees outside, I might indulge in tea or broth, but I'm sticking with cold drinks for now.

3) Sandwiches. I know everyone says to have soup when you're sick, but sometimes it seems like way too much work to lift a spoon.  I get shaky hands sometimes, so that makes spoons a bad idea.  A sandwich, however, is easily accessible, and, if the sickie is tired can be saved for a later date.

4) Steam:  Humidifiers are great, but a few minutes in a steamy bathroom usually makes my head and chest feel less...well...awful

5) Mindless Projects:  I don't know about anyone else, but I always feel worse if I spent an entire day without accomplishing anything.  Today I hung pictures, sometimes I crochet or read, once in college I alphabetized our DVD collection.

I realize that everyone has their own sick traditions.  I like to be left alone when I feel really bad, but there are moments I feel great and want to be out in the world, spreading my germs.  

Hooray for normal!

Monday, October 27, 2008

Tutoring Again

Today I made ninety dollars.  I tutored a college student for 2 hours and a 7th grader for an hour.  I'm getting my groove back.  Sure, I've discovered that I have to drink 3 liters a day or my kidneys decide to hate me, but I've regained a semblance of my former life.  I don't ever want to go back to filling 18 hours of the day with back to back activities, but I do like doing stuff again. 
Stuff is good.

Saturday, October 25, 2008

Hospital Silliness

I thought this was worth posting. I wrote this on Day 2 of Hospital stay #1

My beloved teachers and professors,(the not so beloved will get a different email)
Contrary to rumors I'm not dying of kidney failure or even experiencing "failure" @ all. I will be in the hospital until they can figure out what is wrong, but I'm praying that's only a few more hours because the infomercials on tv are starting to make sense. The nurses call me the funny young one (I'm right next to leisure world, the place old people go to drive) and despite all the complications I have a good attitude and trust the doctors and surgeons.

If you haven't heard any tidbits about me languishing away in a southern Cali hospital, consider this a quick update on my life. If you have heard silly rumors you get to be the one to nip it in the bud.
Audience of one,
Katrina

The funniest thing to me is not the fact that my kidneys actually were failing that day, the "few hours" was actually a few days, and I said Leisure world is where old people go to drive. If you don't live near Leisure World this isn't funny--but the common phrase around here is that LW is where old people go to die. They do drive there, albeit poorly.

I was on very, very strong painkillers at the time, and in my defense, it took a good month or two for me to recognize the severity of the situation. It also took me several months to realize how incredibly loopy I was in the hospital and how much nicer that shot of happiness was than the months of pain killers and muscle relaxants...

Friday, October 24, 2008

Hymns

I took a class my final semester of undergrad called “History of Christian Worship.” We learned about various liturgies, creeds, and movements in the church, but what I wanted to learn was hymnology.

I want to know why I hummed “How Great Thou Art” as I was curled up with a rather large needle in my back to get a kidney biopsy and MRI. I want to know what it is about “Amazing Grace” that makes lots of people cry at funerals, but stand a little taller at baptisms. I want to know why my high school youth leader felt it was of the utmost importance for us to learn all the words of “Come thou fount” and why we don’t sing the “battleshield” verse in “Be Thou My Vision.”

I know that I come from an unusual church background. I feel very blessed that I grew up reciting the Apostle’s Creed every week, and that my first response to “What do you believe?” is “I believe in God the Father, Maker of Heaven and Earth and in Jesus Christ…” We sang hymns and there were times in my childhood that we rocked out to 80’s and early 90’s praise choruses. I learned the gamut of children’s praise and bible verse songs and, due to my tenure at rather hip churches and a school that desired to prepare us for worship in the real world, I’ve learned the latest praise songs.

But what is it about the hymnists? I want to meet Fanny Crosby someday (not just because Adventures in Odyssey made her sound awesome) and I’d like to spend an afternoon or seven with the Wesleys. I want to thank Martin Luther for all of his contributions to theology, but mostly for “Almighty Fortress is our God.”

Wednesday, October 22, 2008

Why I have this Blog

I recently read about a contest to win a $10,000 scholarship for university students with blogs. My immediate response was "How do I get me some of that?" I promptly realized that I not only think in bad grammar, but I don't update my blog enough to win an award.

And then I wondered why I don't update this blog very often. I have a Word document with over 600 pages of content copied from the LiveJournal that I updated several times a week through undergrad, but I'm doing well if I update this once a month.

What's sad about that is that I have a folder of documents called "Blog Thoughts." I write out full length blog entries and then decide not to post them. Usually because they reek of the angst that marks my old LiveJournal...but still. I was really, really sick this year. I'm still not doing great. I think maybe it's time that I allow the friends and family that started to read this blog to find out what was and is going on into my head a little bit.

I named this blog Thistle Theology because, back in undergrad, I grew very frustrated with the acronym 'TULIP" used to describe the main tenets of Calvinism. Mostly, I was frustrated that the semantics of the phrases were debated until they meant nothing, but then I spent some time (that I ought to have been writing a paper or working or some other such nonsense) thinking about how fragile Tulips are, and how very short their life is in the grand scheme of things.

So I decided I liked thistles better. I wrote out a very well-thought out acronym that could probably make me millions if I could publish it, but I happened to write it on the back of a page of theology notes. And as much as I'd like to share my brilliance with the rest of the world, I'm not willing to spend a week sorting through old boxes of notes.

But think about it--thistles are hardy, often difficult to get to, and beautiful in their own unique way. Ironically, I came to the conclusion that I'd rather be more like a thistle than a tulip long before I got sick. My illness has made me more like a thistle. I'm stronger than I was, because, well, I've had to learn to be. I'm wary of sharing my feelings and opinions, because my meds reduced my inhibitions just enough for me to say cruel things to my friends. And I really do think I've come into my own kind of beauty--it's just different than what I had planned.

I'm going to try and post something---whether it's backdated or new, every day until the contest. If I get the courage, I'll submit an entry, but if not, at least I spent a little more time letting people in.

Monday, September 15, 2008

Jealousy

I hung out with the other Young Life leaders last night. Talking to a friend today, I admitted that I’m jealous of everyone who has gotten to do fun things or, well, anything the last 7 months. Jealousy is a new emotion for me. I’m really, really good at talking myself out of feelings. In the past, when I felt a twinge of envy over someone else’s relationship, stuff, experience, looks etc., I was always able to convince myself that I was okay because I had x, y, or z going for me. Those excuses don’t fly anymore. I find it almost impossible to tell an amusing story from the last 7 months because, well, unless you like medical stories, you won’t be amused. You might be interested, fascinated, even, but it’s not amusing. I’m the example of what everyone in their 20’s wants to avoid.

Sure, friends can get in motorcycle or skateboarding accidents and spend some time with medical personnel, but a weird, rare, difficult to explain yet debilitating illness is just scary. I’m sure I can be used as a reason why 20-somethings who don’t do extreme sports should have health insurance. But my friends don’t want to be reminded of that every time they see me. They have good, funny stories about houseboating, camp, dating, church and just, life. I have a scary knowledge of my favorite tv shows and the healthcare system.

I’d like to be pretty again
And self confident
I just want to be a different person than I am right now. 30 lbs lighter. 10x happier, twice as energetic, in 1/10th the pain. I’m just not I a place where I can figure anything out. I know it’s the right call to not be an active YL leader, but it’s hard. I feel purposeless. I’m having a hard time getting up in the morning because I can’t remember what I should be doing. I’m down, I’m tired, and I’m confused

Thursday, September 11, 2008

Forgetting

7 years ago my life changed. On September 8, 2001, my friend Andrew committed suicide. It still seems odd to type those words, to say the phrase "suicide," and realize how much his death changed me. I found out the following Monday, September 10th, and, along with the rest of my friends, mourned him as we tried to muddle through the first Monday of school. The next day my dad followed me to school, wanting to ensure I didn't freak out or pull over to cry as I headed off to first period. Kevin & Bean on KROQ were serious for once, talking about things that made no sense, so I switched to a news station.

The news was surreal. The knowledge that my sister lived a few blocks away from the towers was in the back of my mind, but I was still overwhelmed with grief about my friend, still focused on the fact that he wouldn't be sitting next to me during our AP US test that morning. When I got to school and my dad told me he'd call if he heard something about my sister, it sunk in a bit further. But, like the rest of my friends, I was still focused on Andy's death--searching for a reason.

The AP US test was unremarkable, but about 40 minutes in my cell phone rang, loud and clear in the silent classroom. The teacher came over to yell at me as I answered and hung up.
"You can't have cell phones in school!" She hissed as she motioned to take my phone away.
"You don't understand. My sister is okay."
My teacher staggered back and whispered "Calee is in New York..."
Her words trailed off as understanding passed over her face. Suddenly, the news that she had refused to acknowledge due to our test became personal. It wasn't just nameless New Yorkers being affected, it was one of her former students.

Selfishly, I stuck with the knowledge that my sister was okay, assumed she was fine because she hadn't been struck by debris. I chose not to think about national tragedy because there was something far more concrete in my world---the first funeral for a friend, a peer. Nearly a month passed before it sunk in that thousands of people had died.

The day I found out Andy died I wrote a pithy free form poem about the loss of innocence. It is true that my friends and I lost our rose-colored glasses that day. Suddenly, being a good kid, a smart kid, an athletic kid, a ______ kid, wasn't enough to keep us safe from death. Even now it's so easy to focus on my self-centered high school self instead of on the fact that thousands of people around the country experienced a loss of innocence, the first large attack on American soil in years. People cried together, prayed together, clung together. It's what we do when things get scary.

I'm not very close to the friends I clung to during those weeks and months after Andy died. We're facebook friends, smile at each other in the grocery store, and might get together for a cup of coffee. Many Americans don't know the people they stood next to at memorials or church services in those days, but everyone who was old enough to watch the images on the screen will always have a few surrounding memories to fall back on.

A year ago, my Master Teacher spoke to her class after the school-wide moment of silence and briefly, succinctly, beautifully described why we paused to children who were in diapers when the planes crashed. She talked about how we don't need to be afraid, but it's good to remember hard things and see where we were. Thinking about the "never forget" banners posted around the city helped me remember, but also makes me wonder what people did on December 7, 1948. We remember 7 years later, for many reasons, but I can't help but wonder, at what point do we stop remembering, relegate tragedy-whether personal or national- to history and, well, move on?

Monday, September 8, 2008

My Dilemma

I think I should adopt a method of titling blogs like Scrubs or Friends episodes: I could begin every title with "my" or "the one with." Or I could stop watching so much tv.

Today is the first day of National Invisible Chronic Illness Awareness Week 2008. The NICIA website says "It is sometimes a dilemma whether to make a point of "showing" your illness. You want to appear "normal" and to fit in, not stand out and be noticed. You also want people to recognize and understand your problems. Some people struggle with this. Should they use a cane and be noticed as sick, or avoid it and be misunderstood? How much do you let people know?"

Up to this point, anyone who has seen me has known that I've been ill. The cane and wheelchair made the point for me. I didn't get dirty looks for parking in a blue spot, and I didn't really have to discuss it. Most people seemed very uncomfortable asking what had happened, and I chose to believe that the people rudely staring in the grocery store assumed I was recovering from an extreme rock climbing or snow-shoeing accident.

But now, thankfully, I'm able to be up and about for anywhere between 2 and 8 hours a day.... without the cane. I went to a movie on Saturday and walked slowly up and down the stairs. Instead of encouraging "you can do it!" looks, I heard frustrated sighs as I clung to the railing. It's not PC to make fun of the disabled, but our hurried culture does not look kindly on those who move slowly. It seemed odd to leave my cane in the car at church on Sunday night, and I imagined people around me wondering why a seemingly healthy person needed to park up front, needed to sit down during the songs, needed to lean heavily on steady things in order to remain upright.

It finally happened. I'm invisible. I really do love it, because even though I'm still in pain, the good moments make me believe that the day will soon come when I don't have to worry about falling or getting too tired that I'm not sure I can drive home. I can't wait until I can go months or years without a Tylenol, much less the heavier stuff I've been on recently. It will be awesome to sleep through the night without medication. I have hope that someday I'll be back to "normal," but for millions of people around the world, the hope of "normal" lies in the hands of researchers for drug companies that have little motivation of finding a cure for the many invisible illnesses.


I've adopted a method of disclosure through facebook and my blog that, I hope, may help people communicate with those around them that struggle with disease, disorders, and chronic pain. I'll admit it, I used to be one of those impatient people who grew upset when people walked slow, and I can't remember if I shot dirty looks at seemingly healthy people leaving handicapped spaces, but due to my comparatively brief experiences in the world of illness, I don't think I'll ever look at people the same again.

Wednesday, September 3, 2008

Fear

I'm the first to admit it. I'm scared of getting my results back from tests. I typically get a test the first of the week and see my doctor on Friday, so I spend at least a week worrying. The weekend prior to the test I try to eat "extra" good so my cholesterol and triglycerides are better. The actual blood/urine test is fine, I get along quite well with the people at my hospital's outpatient center. I genuinely like both my primary care doctor and my nephrologist. But it's the days waiting to see a doctor. Will he discover something else is wrong? Will she prescribe something new with another side effect? Will the proteins go up? down? Is that swelling or just my imagination?

Friday is my first visit post-Prednisone. 6 months was plenty, thank you very much, and I know statistically I'm due for a relapse of my MCD about now, but I'm just wondering if, after enough visits or enough months without a relapse anyone can reach the point where they can walk into that office or see the doctor's number on the caller ID without being afraid.

You see, my dad gave a sermon on fear this last Sunday. It sparked family discussions and caused me (and hopefully some others in the church) to think about what we're really afraid of.

Anyone I've spoken with in the last few months has heard me talk about my newfound love and appreciation for Doctor Who. But there were some episodes (namely Blink) that scared me so much that I went online and read the episode synopsis before finishing it. I still got to see the incredibly creepy moments, but because I knew how the story ended, I wasn't terrified anymore.

What a joy it is to live my life knowing how the story ends. Sure, I'm worried about test results and when I'm going to finish at Pepperdine and if I'm EVER going to get a job, but I know how my story ends. It's very easy for me to get caught up in the day to day---my frustrations with my former physical therapist, my fear of the future--but my Redeemer lives. My hope is built on something more tangible than my tenuous health, more firm than my relationships or credibility as teacher. I've seen the end of my episode--and just like every episode of Doctor Who--where the Doctor saves the day in an unexpected way--I'l be okay.

Sunday, July 20, 2008

Truth

Dear World,

I have not handled the last few months very well. After my hospitalization and the frightening diagnosis, I tried to take everything into my own hands. I followed doctor’s instructions to the ‘tee’ and tried so hard not to be angry or depressed or afraid.

When talking to people, I’ve shared about my triumphs over the weakness and pain, rarely opening the window enough for anyone to see a glimpse of who I’ve really become. I’ve let people know that it’s been hard, but only my parents saw me at my physical worst, and only God has seen the truth.

I am so angry that the last few months have been stolen from me. Even as I type that it hurts to write it. I’ve been incredibly judgmental of the people on my message board who complain about everything and everyone in their lives. I’ve chosen to act as Pollyanna, with the desperate hope that if I pretended I was okay long enough, it would be true.

But it’s been 5 months. The uncharacteristic anger I felt when my car was smashed showed me that I haven’t been as peaceful as I’ve led anyone, including myself to believe. The hours I spent sobbing apparently weren’t enough---there’s emotion in there that I’ve done a very good job of keeping under.

My theology tells me that I can get mad at God, but not too mad, because I know logically that he’s not at fault. Yes, he’ll still love me if I rail at him, but…

And I stop there—something has been holding me back from truly pouring out my feelings to God, and I am afraid of knowing what it is.

God, I’ve been telling everyone that I know you still love me---wissen know, not kennen I guess. I’m so very hurt and angry that my life isn’t going the way I’d like it to. I’m disappointed that I haven’t been able to do things I’ve planned, and more disappointed that I don’t want to do many things. I’m tired of being tired, but I’m afraid that if I go back into my regular life I’ll get sick again. I’m afraid that you are punishing me, or that this is some sort of sick exercise in helping me learn. I say it’s a sick exercise because I don’t think it’s fair that I should have to go through this when no one else I know does. I’m afraid that it’s a punishment because I know how awful I’ve been---I know that I deserve worse. I’m afraid that all of the spirtual-ish things I’ve been saying aren’t true---that I turned my back on you and doubted your love and have just been lying for 5 months. I need your reassurance that you still think I’m beautiful, even now, even when I’ve been so foolish

I still don’t know why you gave me this particular journey. I’m so good at spiritual talk with mom—but I really have no fucking clue. And it pisses me off. I want to know. I want to understand it so I can seek to control it. But instead you’ve made this something that I just don’t get, can’t get, can’t ever control.

I need you to remind me that you’re trustworthy. The covenant and the promise. I don’t know what I’ve lost hold of in the last couple of weeks, but it’s something. Ever since my car, maybe even before that, I’ve just been so angry, so afraid, so sure that it’s just going to get worse. And it has. And I’ve dealt with it. But I’m tired of dealing, of coping, of pretending that I’m okay. I’m not okay. This situation is not okay. I’m tired of people looking up to me and being proud of me because you and I both know that if they were in my head, they wouldn’t feel the same way. But I don’t want to lose that, because I feel like it somehow justifies what’s going on in my life, somehow makes this crappy few months worthwhile in the grand scheme of things.

I refuse to fall into nihilism. I know that there’s something more out there. I know that I was meant to seek meaning, and I know that at some point, I’ve found it in you. But I also refuse skepticism—saying that your way is only good when life is rosy. I want to know, but I’m afraid to know. You are indeed God—Almighty, Invincible, Omnipotent, Omniscient, Omnipresent. Remind me of that, would you?

Saturday, July 5, 2008

On Being a Victim:

When I was diagnosed with Minimal Change Disease, I searched everywhere to find a reason why it was me. It’s one of those idiopathic diseases---meaning they haven’t quite figured out what makes it tick or why someone would get it. I wanted to have someone to blame—even if it was myself for working too hard or not sleeping enough. I desperately wanted to find some evidence that a vitamin or medicine I was taking had caused it. I read medical journals and the stories of other people like me. And I had nothing to blame.

My pain, weight gain, hair loss, emotional roller coaster and other side effects can all be blamed on Prednisone. Perfect. A culprit to take the blame.

When I walked out of my sister’s house to find my car smashed and about 50 feet away from where I parked it, I had someone to blame. The stupid 17 year old girl driving a mini who was going too fast and looked down because she thought her dog was choking. It was great. I had someone to blame.

When I discovered poison oak on my arm, I could trace it back to my dog probably rolling around in it and then transferring it to my highly allergic skin. Someone to blame.


For the past 5 months I’ve done a fairly good job of dealing with everything. Sure, I’ve had long conversations with God asking for help to find a reason why, and I’ve been lonely and depressed, but all in all, I’ve coped. But through it all, I was terrified that I wasn’t dealing with it well, that the fear and anger would eventually explode if I couldn’t find someone to blame.

I couldn’t blame God for my disease—I know that he is good and doesn’t cause pain, so I didn’t buy it when people tried to help me justify my situation by saying God had given it to me to help me grow. I didn’t buy it. I accepted the idea that disease is a part of the brokenness of the world, and worked on thanking God for the good hours, gritting my teeth through the pain and surviving.

But all the other things—the drugs, the car, the poison oak---I had a culprit—I finally had something to be angry at. I let myself revel in that anger for a few days—finally aware that my emotions might not be purely rational.

That girl who hit my car? She’s a 17 year old kid---just like my Young Life girls. Suddenly, I knew that anger at her or her insurance wouldn’t make me feel better.

The prednisone? It’s keeping the poison oak from spreading and making my entire body puffy and itchy. I’ve hated it so much, but it’s still helping me,

The poison oak? Hard to have a good attitude here—I mean it’s a stupid itchy plant that, as far as I know, does nothing good for anyone or anything. But as I mentioned, it’s not spreading nearly as fast as it has in the past.

It’s hard to feel like a victim when you’re thankful. It’s even harder once you learn how to forgive. Sure, I wish my brand new car was still as flawless as it had been before the accident—but I forgive that girl---she’s just like I was and my girls are now, a teen driver who makes mistakes. Sure, I wish Prednisone had no side effects, but I’m glad it’s effective. Sure, I wish I hadn’t gotten poison oak, but considering how bad it’s been in the past, I’m glad it’s under control.

And then I come full circle. I have no one to blame for this disease. The people on my message board lash out and are so angry about the months and years this disease has stolen from them. They go from doctor to doctor, hoping that one of them will be able to give them something other than a faceless disease to blame. I don’t want to be like that. I don’t want to be barely containing my anger all the time. I want to live my life leaning on the one who has seen my every thought and emotion in the past 5 months and still thinks I’m beautiful.

Thursday, July 3, 2008

Tears in a Bottle

I’ve never understood why Psalm 56:8 was in the Bible. The idea of God keeping all of my tears in a bottle never seemed all that exciting to me. It’s one of those poetic things that never really sank in---much like the idea that God can number the hairs on my head. I can’t even number the hairs I clean off my brush each day, but that’s besides the point. The point is I’ve cried a lot in the last 5 months, and I think I’m beginning to see why God views our tears as so precious. It’s easier for me to write this in third person, so bear with me.

She couldn’t see the screen anymore. It was late and the tiny font on her iPhone was hard to decipher. But she knew that it was bad. Even though she couldn’t understand all the medical mumbo-jumbo, every site that included the words “nephrotic syndrome” and “acute tubular necrosis” also included very scary predictors of what had happened to other people. It hadn’t sunk in that those words now described her, but the beeping of her monitors, the buzzing sounds of a hospital and the shooting pains coursing through her body now that the last shot of morphine had worn off were a reminder that this was serious. So she cried, tears of pure fear.

She buried her head in her hands a week later, reacting to the shock of her reflection. Her face and eyes were so swollen she looked like she had Downs Syndrome. There was so much water in her skin, everything hurt, everything was swollen. It didn’t seem like the medications were helping, v As she rocked back and forth, crying that she didn’t like who she was anymore, her mother cried too, tentatively rubbing the girl’s back, afraid to say that everything would be okay. They both knew that this, whatever it was, was hard. So they cried, because there didn’t seem to be anything else to do.

She tried to understand. People had visited, sent flowers, called, texted and wrote emails for the first month. Slowly the outpouring of love from friends and colleagues dwindled to a trickle. She tried to understand that other people had lives to live, things to do and jobs to take care of. She tried to understand without jealousy, without desperately wishing that she could be out of the wheelchair when she left the house, without desperately wishing that she felt good enough to leave the house. She was thankful for her family and the moments when people did contact her, but she didn’t really understand. So she cried.

She sat against the wall in her closet, long after diagnosis. She had collapsed after staying in the hot tub too long, pressing her face on the cool wood floor and refusing help to make it up the stairs. With each step, she faced a new demon, crawling at a snail’s pace, convinced that if she could just make it up the stairs, she’d be okay. Sitting on the floor, she knew that she wasn’t okay. It had been so very long, and she still wasn’t okay. At that point, after weeks of not sleeping, weeks of crawling up the stairs, she wasn’t sure she would ever be okay. So she cried.

Months passed. She got very good at blaming her tears on the medication. Sure, she cried watching music videos and reading textbooks, but the tears weren’t her fault. It was the medication. She held her breath for the results of every blood test, relieved when she didn’t relapse, but halfway hoping that something would show a miracle cure that would make her better tomorrow. Always tomorrow, because the daily pain reminded her that she still wasn’t okay. But when tomorrow brought more pain, more disappointment, she cried.

She got very good at finding glad moments in her days. Tutoring, seeing her Young Life girls, talking on the phone with a friend, adding a minute to her routine at physical therapy. Although any activity left her wasted, lying in bed trying to get her heart rate down, drinking fluids to replace those lost, she desperately needed those moments. She was good at convincing herself that one good moment each day made it okay. But then it would rush at her, all the things she missed because most of her days were spent recovering: the play one of her girls performed in, her niece’s 1st birthday, a long planned camping trip, her grandmother’s 75th birthday, graduation with the rest of her class, the last Young Life camp with her girls. So every once in a while, she cried, because life just seemed too hard.

She went to church one night with a childhood friend. She sang well known songs and listened to a familiar sounding sermon. But then, her childhood friend, who had been more consistent in her care and attention during the long illness than any others, despite their long separation, prayed. The girl felt the tears slide down her cheeks and hit her hand. She was overcome by a feeling of such peace, of such love. It was as if the hundreds of people around the world who had told her they were praying were standing there, as if the thousands of angels who watched over her daily were able to, for an instant, let themselves be seen. So she cried, because it was so beautiful to be so loved.

I can find such joy in the knowledge that my tears are precious. Not because there is something intrinsically good in tears, or because crying is cathartic or whatever people try to tell me. But because through every one of those moments that I re-lived as I typed my story out, I was not alone. From the moment I entered the hospital to the drive home from church tonight, I have not been alone in my battle with kidney disease. I’ve tried so desperately to justify to myself and others that there was a reason for my disease, a reason that all of this happened. Yes, it’s given me an empathy I’ve never felt, and yes, it’s opened doors in conversation that would have been previously closed, but those aren’t good enough reasons to keep me going on days like today, when it all seems so hard, so unfair.

But, friends, Jesus was there with me the whole time. He was the only one who was with me the whole time---the only one who has watched every flux in faith, every rollercoaster of emotions. Not only does He know my name, my every thought, but He knows my tears. I believe that Jesus not only wept when His friend Lazarus died, but He weeps when we weep. God didn’t give me this wretched situation, He walks with me, and gets close enough to me when I cry to capture my tears in a bottle.

Tuesday, June 17, 2008

Appearances

I never considered myself to be vain. Heck, I've been one of those obviously-low-self-esteem-girls for as long as I remember. For a brief period in undergrad, (thanks to a well-developed gym habit and a trainer to help me get fit before Kristin's wedding) I was nearly as fit as I was in high school, but then, back in high school I thought I was hideous, so I guess that's entirely beside the point.

But well, it's harder to look at myself in the mirror these days. I definitely have the prednisone moon-face, which my excessive research informs me will disappear within months of discontinuing the drug. Allison and I laughed over the term "buffalo-hump" used to describe movement of fat deposits to the upper back. Her med-school books showed a very pronounced, Igor-like hump, but even my small increase in new inches is disconcerting. Stretch marks are one thing when you've produced a small human being over the course of 9 months, but another thing entirely when you gained the weight in 6 days and have nothing to show for it but, um, I'll get back to you on that. The weight gain stemming from the excessive appetite side-effect is annoying, but I weight-gain I can handle.

All those things are annoying and upsetting, but there's one thing that shows me just how vain I really was. My hair is falling out.

There. I said it. I've been joking about wigs ever since I got sick, claiming that I would buy a curly red Texas-Beauty-Queen style wig, but never really believing it would happen. When clumps started falling out and my hair brush filled up daily, I kept up the pretense, laughing when my sister offered me her mother-in-law's cancer-survivor wig. I smiled and said I was glad that thinner hair dried faster, and that I had such thick hair to start.

Don't get me wrong, I still have a good portion of my hair. It's only noticeably thinner when I put it up. As the hair continues to fall out, I lose a little bit more of my vanity, recognizing that this side-effect is almost as hard to deal with as the sleeplessness and joint pain, but also recognizing that my lack of sleep and constant pain make me considerably more vulnerable to feeling sorry for myself.

Hair loss is a relatively rare side effect of steroids---I was bracing myself for hair loss with the backup drugs of Cytoxan or Cyclophosphamide I want so badly for nothing to go wrong with my taper, so I can be rid of this drug that seems to be slowly poisoning my entire body. I reacted badly to my parked car being slammed into---the extra adrenaline made my entire hands shake and had Erin not rescued me, I probably would have screwed up the police report or tow truck stuff by my frenetic energy. That's not me. Or not the me I remember. This medication, this disease, have changed me into someone I don't recognize anymore.

Saturday, June 7, 2008

The following is from the National Library of Medicine website. I have italicized those that I've experienced

Prednisone may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

headache
dizziness
difficulty falling asleep or staying asleep
inappropriate happiness
extreme changes in mood
changes in personality

bulging eyes
acne
thin, fragile skin
red or purple blotches or lines under the skin
slowed healing of cuts and bruises
increased hair growth
changes in the way fat is spread around the body
extreme tiredness
weak muscles
irregular or absent menstrual periods
decreased sexual desire
heartburn
increased sweating


Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

vision problems
eye pain, redness, or tearing
sore throat, fever, chills, cough, or other signs of infection

seizures
depression
loss of contact with reality
confusion
muscle twitching or tightening
shaking of the hands that you cannot control
numbness, burning, or tingling in the face, arms, legs, feet, or hands
upset stomach

vomiting
lightheadedness
irregular heartbeat
sudden weight gain
shortness of breath, especially during the night
dry, hacking cough
swelling or pain in the stomach
swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs
difficulty breathing or swallowing

rash
hives
itching

On a lighter note, I'm currently halfway through this semester (again) and think I'm actually going to finish it this time! Everyone around me, doctors, physical therapists, family, and close friends who have walked through this with me, have seen improvements. I'm to the point now that because I feel good SOMETIMES, I think I should get to feel good ALL the time.



I'm so blessed to be where I am now, and not where I was 3 1/2 months ago. Every once in awhile I have enough energy to drive myself, or to go to a movie or out to lunch with a friend. I have no idea if I'll be able to make it to even half of my obligations, but I'm trying my best, and working on not feeling guilty when I have to bail on people I care about.

Thursday, May 29, 2008

Brought to you by Lunesta!

Now that I've slept, I feel more sure about writing something that won't be snarky or awful or make people feel bad. True, I can blame my personality changes on Prednisone and not sleeping, but there's no need to be unpleasant.

"It's been an interesting road." Whenever I meet anyone new, or anyone I haven't seen in the last 10 weeks, that's my fall-back phrase. Because if I say that, I don't insult their shoes, or hair, or rage about how much I hate the new Subway 5-dollar foot long commercials.

After trying Ambien, Tylenol PM, Elavil, and Sonata (my bathroom counter looks like a pharmacy), we have found a response to the prednisone-induced insomnia. Those of you who have lived/travelled with me at any point probably remember that I love marathon sleeping sessions of 12 hours or more. Right now I'm rejoicing that I slept 6 hours *in a row* the last 2 nights. I am a firm believer that one should not drive if one has had less than 4 or 5 hours of sleep... and my 2 month run of no sleep made me a bit unsure of whether I'd ever be able to drive again. I now have hope. Which is good, because after 10 weeks of mostly conversing with medical people, hope is something you really need. And really, living in Southern California, the ability to drive is also something you really need.

My new nephrologist is significantly more laid back. He basically told me not to freak out about clotting, strokes, heart attacks, and my ludicrously high cholesterol/triglycerides. Which is good. Because my mind automatically goes to worst case scenario, and so did my old neph's and combined we were practically planning my funeral. New doc is helping me taper down the Prednisone as quickly as possible, and has high hopes that I will never relapse.

My energy level has increased significantly, but I wear out if I walk too far or stand up too long. Definitely better than before--but I still get frustrated that I'm not back to baseline. My physical therapists are helping me build endurance and get stronger, and the prednisone taper should mean that soon I will not feel like a rheumatic 80 year old.

have a hard time explaining what's going on, because I don't have the breadth of vision or communication skills to say what's happened in the last 2 1/2 months in 100 words or less. I'm so excited to be dipping back into life again, seeing my Young Life girls, tutoring a wee bit, starting my Pepperdine classes over again, talking with friends on the phone without being terrified that I'm going to say something awful, and taking interest in things other than the Food Network.


I can't be sure where I'll be 10 weeks from now. My YL girls are graduating (as are my Pepperdine classmates) that week. Hopefully I'll be strong enough to do quite a bit more, hopefully I'll be sleeping and not eating like a ravenous beast, but we'll just have to see. By then, I should be tapered down to a maintenance dose of steroid. Craziness.

Thank you for your facebook posts and messages. It's too easy to isolate myself up here on our little mountain--I typically choose not to call or use what energy I have to visit people because my track record hasn't been good for saying pleasant things if I'm tired. And in a way, I'm protecting you all from my lack of having of having a filter anymore...I miss being tactful. I'm so grateful for all the prayers and all the encouragement, and I don't want to be rude to those who are being kind.

Tuesday, May 27, 2008

Driving

For those in the Orange County area, do not be shocked if you happen to see a girl who looks surprisingly like me driving a car that looks surprisingly like mine.

I drove to Physical Therapy and back today. It was delightful to choose the radio station and feel independent again. I really like driving.

For the record, the reason I haven't been driving is pain management not because any doctors said it was a bad idea. (They all say do what I feel good enough for) I'd say that until this past weekend I've been in pain upwards of 95% of the time. The last few days have been about 80% pain free. It's amazing what one can do when one isn't focused on getting through.

I honestly haven't wanted to plan anything, do anything or go anywhere. Making it through my 3 hour classes was more difficult than I'd like to admit, and filling my days with anything seemed more than I could bear.

But now, tentatively, I'm ready to step slowly back into the world. Jesus and I have had many conversations about what the point of this whole sickness thing is, especially in light of recent test results. I can honestly say that I'm glad it's been me and not any of my family members or friends. I wouldn't wish my last 3 1/2 months on anyone, and with the full realization that these past few days without pain may just be a gap, I still would rather be the one sick than my mom or sister or friends. My God has a tendency to help those He loves grow in hard times--I just pray that I come out on the other side kinder and more loving than before.

Thank you, friends, for encouraging me, for understanding that I don't want everyone to remember me being negative during this time, because, despite all the crap that has happened, I'd say upwards of 95% of the time I've been at peace with this whole crazy world. Which is odd--because that seems to directly correlate with how much I've been in pain. I'm only really depressed when people around me list all the reasons why I should be upset with my situation. I know that people all over the world are praying for me, for peace, for strength for comfort. Any good I'm able to do or say these days is so not me--it's the One we pray to giving me strength and joy.

Saturday, May 24, 2008

Pain

If I had to describe my pain right now, it would probably be aching in my lower back, with a few shoots whenever I move, and some stinging in my hands, because I’ve typed for far too long. My wrists and forearms are still sore from the Wii, so I don’t really count them in my pain inventory.

But my knees are okay. My stupid knees that made me feel so old are okay. I don’t want to jinx it, because they’ve been okay for awhile now (Two days, maybe 3?) with only a few twinges.

I’m so very afraid that the pain will come back. What a stupid fear. I have no control over my body’s response to the prednisone. Whenever a side effect subsides, my initial reaction is to worry about when it will come back, instead of rejoicing that I get a reprieve. I analyze what I did that made it flare, but get nothing for my trouble but a headache and a few hours spent searching medical tripe on the internet.

If I woke up tomorrow pain free, with the knowledge that the pain wasn’t coming back, I would ask my mom to take me driving around the valley. I crave my independence far more than I craved sodium a few months ago. I hate it that it’s this sporadic pain that keeps me from getting back to life. The weakness I can handle—if I rest, my strength comes back. But oh, the pain changes me from a person I genuinely like, to a selfish, self-centered prig who couldn’t care less about being an inconvenience or a burden. I feel like if the pain got bad while I was driving alone in town, my only response would be to pull into the nearest parking lot and sob until I could do the deep breathing exercises that are supposedly helpful. It terrifies me that I could be stranded at school or a coffee shop because driving while on my pain meds/muscle relaxants is a very bad idea, but driving in pain that makes my hands shake and my eyes want to squeeze shut is a much worse idea.

And maybe, the pain isn’t that bad. My nephrologists suggested that the pain was caused by depression which means that it’s all in my head. My PCP gave me a month’s supply of Soma (muscle relaxant) and enough Vicodin to keep Dr. House going for at least a day. Maybe I’m just a wuss now—and if I was a normal person I could handle it with Tylenol and a heat pad or ice pack.

Note to self: pain in wrists definitely real

I have a day in my head for when I’ll be completely off the prednisone, but I’m hoping that most of these side effects will be long gone by then. As it’s 12:40 and I’m not sleepy yet, I guess I should turn on the tube, take a sleeping pill and submit to the truth that restless energy and sleeplessness are still side effects I’m dealing with. (Dealing with fairly well, but still, dealing with them)

Friday, May 23, 2008

Self Esteem

Mom wants to take me shopping.

I hate that I need new clothes because I’m bigger

I hate that it’s my own lack of self control that brought me here

I wish I didn’t need the clothes, but I have fewer and fewer options the more I gain.

Kohl’s is having a huge sale tomorrow morning. We should probably go, just to save the money.


I hate it when people stare at me. I think I’m ready to be rid of the cane. I don’t want anyone’s pity, I just want to be back to normal.

My face is definitely swollen, but it’s not my fault. Or is it? Could I have done better at limiting myself from food? Certainly. Would it have been wise considering my mood and pain levels? Doubtful.

I hate that I still doubt whether my pain is worthy of a painkiller. I hate that it gets worse at the worst possible times and that other times I feel fine for no reason.

I hate that I research to gain control, but that my research typically makes me feel even more out of control.

I hate that I don’t want to tell my friends how I’m really doing because I’m afraid they’ll remember me being down during this whole thing.

I’m scared that I’m relapsing. So scared. I’m pretty sure I’m not, but still.

My hands hurt right now, but not bad enough to take a painkiller. Well maybe. If I don’t get drowsy soon, I’ll need to go get a sleeping pill. Oh, who am I kidding---there’s no way I’m going without meds of some sort tonight. I wish joint pain was a slightly more common side effect of prednisone, then they’d believe me.

I’m angry at God for not making this easier, but I’m afraid to seek Him out because He might do something that hurts worse. Reading the Bible seems very hard these days; I honestly don’t know where to start. Amy Carmichael’s “If” just makes me feel guilty. My novels are hard to hold (lame excuse) but I’m just tired of it. I was going to type “I don’t know what to do” but I do know. When you don’t want to pray, pray. When you don’t want to read the Bible, get reading. I just hurt. I don’t feel like I can handle anymore (He can handle it) and I’m afraid that’s what I’m going to be asked to do.

I don’t feel beautiful. I don’t feel treasured by God. Sure, he loves me, but for some reason I don’t feel like he’s calling me precious these days. I know He’s been carrying me through these past few months, but it sure as heck doesn’t feel like it tonight. I’m scared shitless that I’m going to swell again. And God would still be sovereign. But by not letting me get a glimpse of Aslan, I’m faltering. Maybe that means Aslan asked for greater things of Peter and Edmund and Susan, but Lucy got to bury her face in his mane….her reward seems greater. I know the circumstances are different for everyperson, but I’m so tired of not understanding mine. Of not knowing if it’s safe to plan or dream just in case I get worse or just continue to still be debilitated by Prednisone.

I want to take my life back. I want to drive tomorrow, but I wanted to drive today and woke up knowing it wasn’t going to happen. I want to wake up tomorrow with a normal person’s energy—not hyper, not frantic, not lethargic, just normal. Normal person’s energy, normal person’s appetite, normal person’s pain levels, mood swings. Normal.

I hate that I’m whining, I hate that I can’t be positive right now (well, I could, but that would take too much energy)

I just want to be happy, to be able to do what needs to be done, and to be okay with where I am and where I’m going.
Sue me.

Tuesday, May 20, 2008

Notice

I'm officially tired of being sick. As it is impossible to take a vacation from one's body, I am going to take a break from researching all the possible things that have/are/could be going wrong with my body. I'm tired of reading medical journals and message boards, e-zine articles and drugs.com. I've read the blogs of people who are also in chronic pain or suffering from debilitating diseases. I've read more complaints about how prednisone makes people gain weight and look fat than I care to mention. I've spent countless hours struggling through scanned in medical textbooks trying to figure out the missing link: why did I get sick in February '08 and not earlier? What set this whole thing off? Is there a natural remedy or something other than prednisone or cytoxan that I can take to keep my kidneys going strong?

And you know what I've discovered? Nothing. Well, not nothing. I've learned a helluva lot about the medical realm that I didn't know before. I've learned that paranoia takes on a whole new form when you're not supposed to get a fever or a cold and *gasp* your body temperature went up 2 degrees! Do we need to go back to the ER? I've learned that although it would be best if I avoided mixing my cornucopia of sleeping pills, pain killers and muscle relaxants, people survive if they don't wait the full 6 hours between each type of medicine. I've also learned that people who are addicted to my pills take one month's worth in a day. And somehow they're still alive to post about it on their message boards.

If I could take a vacation from my body I'd drive to a coffee shop or a bookstore and just sit and read a novel. Maybe I'd visit a friend, maybe not. Maybe I'd go see my girls, maybe not. Maybe I'd bring Zoe so we could go for a walk on the beach or at a park. Or not. The day is coming when I'll be able to make those choices again, when I'll be able to walk without the cane and without the fear that I'll be so tired once I get to wherever I'm going that I won't have the energy to get back. I won't be the same me as before. I don't want to be. The person I see in the mirror is certainly heavier than before, with a few stretch-mark battle scars, but I like her better than the girl I used to be. Each day I climb a new mountain, each day I face a new fear, but this girl, the one who made it through those first weeks with a smile and a song, is far stronger than the girl who thought that chronic illness was measured in days or weeks.

Saturday, May 17, 2008

Redefining Stress

Before I got sick (I use that phrase far too often these days), I defined stress as having too much on my plate with not enough down time. I defined it only by stating what it was not.
Reading is not stressful.
Gardening is not stressful.
Sleeping is not stressful.
Watching TV is not stressful.

When people assumed that I was "stressed out," I would often calmly agree that I had too much stress in my life. The phone call from a kid who was making poor life choices, the deadline for a project that I didn't think was worthwhile but wanted to perfect anyway, the friend who called to vent about a recent breakup and the hours and hours and hours in a classroom setting were, to me, prime examples of stress-inducing situations.

But when people (not doctors) started asking if stress could have caused my disease, or could cause a relapse, my back rankled at the thought. Because all of those stress-inducing situations are things I enjoy doing as long as I'm well rested. When the literature about nephrotic syndrome read that stress could cause a relapse I sank into a deeper depression than I'd ever experienced. Give up stress? That means giving up all the good things in my life that have just been 'on hold' since my kidneys "crapped out" on me. (Patrick's words, not mine)

For weeks, I held out hope of finishing my classes at Pepperdine with my classmates. That hope was dashed, but I had other goals. Maybe I'd be healthy enough to take my girls to Young Life camp at the end of June. Scratch that: I've never been to camp and not come back sick and exhausted. Certainly, by May I would be driving myself to and from school, with plenty of energy to pour into friends and kids. It's mid-May and I'm neither behind the wheel nor bouncing with energy.

Okay. So life doesn't go back to normal quickly. I think I might be able to grasp this. According to my Nephrologist, (kidney specialist) my Prednisone taper will end on September 5th, 2008. How in the world am I supposed to live until September without being in stress-inducing situations? Avoiding stress seems like a good way to avoid relapse, so I'll just continue my hermit status until September.... or not. Instead, I think I'll actually take the medical definition of stress, which, thankfully, is more of a definition of what stress is, than what it is not.

Stress is the body's reaction to daily wear and tear, to change, to danger, to an immediate threat.

Short-term stressors are things like noise, crowding, hunger, illness, danger, infection, isolation. Things that, two-hundred years ago, would be cause for alarm and hopefully make a sane human being run for cover.

Long term stressors are things like:
Difficult work/personal environments (Okay, I don't really see anyone except my family, Physical Therapists, Professors, and the 6 people in my summer-term classes--significantly less stressful than all the before sickness stuff)
Loneliness (hrmmm, odd that the loneliest 3 months of my life would also be the months I was supposed to avoid loneliness)
Long-term illness (wait a second, if the illness is causing me stress, and stress can cause the illness and the illness is.....aahhhhh)
Difficulty sleeping-- (Dear Prednisone, I hate you.)

And then there are some others, like having a kid or moving to a new house, both of which I hope are far, far down the road for me. But that's beside the point. (What was the point again?) Oh, yes. Redefining Stress. Which is why I started this post in the first place. Because I don't want to be afraid that everything I'm going to do this summer, every person I care about or activity I attempt is going to make me sick again. Because I want to declare to the internet that I refuse to be ruled by stress. Because I think the big stresses of being sick and lonely and tired need to be balanced out. Because I want to live my life as a daughter of Grace rather than Fear.

I don't think my schedule caused this whole thing, but I know for sure that my stress-reducing activities are enjoyable, and when I go back to "normal" life, I want more time for them. It's not selfish to spend less time on other people, to sleep instead of perfecting a project or to make sure that I surround myself by people who don't leech my energy. It's just sanity. And because I am still incapable of defining stress without defining it by what it is not, I'll end with this. Stress is not sane. It is not conducive to a healthy frame of mind or body. It is not without benefit (bursts of energy etc.) but it is not a good way to live. In my current life, with fewer responsibilities or deadlines than I've had since I was 12 years old, I am more "stressed" than I've ever been:

.......And I still haven't relapsed.

Saturday, May 10, 2008

Invisible

I'm 23 years old. On my 23rd birthday I was still 40-lbs swollen, still on the renal diet, still convinced that I'd be back at school in a few more days, and still unaware of what it's like to be sick long term. But I had tickets to Wicked; tickets lovingly given to me as a Christmas present the year before, tickets that were so good I felt like it was worth it to be nauseous and in pain so I could share those 3 hours with my best friend, my mom and my cousin. It was SO worth it. Smuggling instant ice packs into the theater was easier than I thought, and my steady stream of painkillers didn't detract from the awesomeness that was our seats.

But the other best part of that day? We bought a cane. A standard CVS black metal cane, with the funny S-curve at the top with a foam handle. I wanted it because, and I quote "I'd rather have people know that I'm sick than just think I'm a fat girl who walks slow." It was one of the best $20 I think my mom has spent on me in the last 3 months. Except maybe that time she let me eat french toast with real butter at Coco's--that was a good meal. Anyway, the cane has been used every day I was able to walk of the last few months, making possible a lot of things that I would continue to avoid---like, say, leaving the house.

You see, for me, the cane is a sign of my increased mobility, the sign that I'm getting better. The older people who look at me with what seems like a mixture of pity and relief that it's not them, always seem sad that I'm walking with a cane. People my age look down or away, anywhere but at my face--seemingly afraid that they'll see themselves mirrored in whatever it is that makes me weak. One of my Young Life girls, on a day when I needed the wheelchair, told me "I usually feel uncomfortable around people in wheelchairs, but with you, I'm just glad you're able to be here." A part of me is glad that I have the cane, that people don't bump into me and are sometimes surprisingly kind in opening doors or offering to help. I love that people ask if they can hug me and are wary of giving me their germs. But a very big part is waiting for a time when I can blend in again, when I'm strong enough to walk quickly without the cane, when my mom doesn't have to haul our rented wheelchair around in the back of her SUV in case I have a bad day.

My physical therapists keep reminding me that I'm getting so much better. They rave about my ability to do 2 lb arm curls or 10 lb leg presses. Every minute I can do on the stationary bike is a tired, sweaty accomplishment that merits ultrasound massages, heating pads and ice packs. I'm strong enough now that there have been times when I barely leaned on my cane. Of course, there have also been moments of intense pain where I lean heavily on it, thanking God for metal stability.

The cane makes me visibly different. My mom has mentioned that she thinks most people look at me and assume I've been in an accident. When I went to church last week 4 different people came up and asked me how my foot was. "My foot?" I said "Oh, right, the cane. Actually, I experienced kidney failure a couple of months ago and I'm still really weak." The look of shock on person #1's face helped me tone it down for the next few people. I was a bit sad that people at my home church had only the glimpse of me hobbling around weeks earlier to know I was ill, when churches around the world have been praying for me by name. But then, my personality does not lend itself to asking for help; I barely let my parents help me when I collapse or have to crawl up the stairs. The cane, my constant companion, has taken away my invisibility and has grouped me in with the disabled.

At 23, I'm not giving up without a fight. I've stubbornly resisted going through the DMV rigamarole of getting a Handicapped Parking Pass. I'm rationing my energy better, choosing to save my energy for class and physical therapy, doctor's appointments and blood tests. Lord willing, I should be walking without my cane soon. I'm looking forward to a world without my cane. It's been a perfect crutch for the last 3 months, but I like dreaming of the day when I can move it to the back of my closet and not bring it out again for another 60-odd years.

Friday, May 2, 2008

Filling

Today my parents, niece and I wandered up and down the aisles of Lowe's garden department, dreaming of what to put in my garden. Audrey and I both "oohed" and "ahhed" over the colors, textures, and scents of everything from jasmine to dahlias. She also enjoyed shaking seed packets and dropping her sippy cup over the edge of the cart. But that is entirely beside the point. I'm not entirely sure what the point ought to be, but I originally created this blog so I could try and sift through my opinions on the theology of my life, my view of God's interaction with the world, and my oft-neglected study of the knowledge of God.

But back to the garden center.

Before I got sick (I use these words often), if I had an hour to spare I'd often spend it cruising the aisles of the local garden center, dreaming of my perfect garden, often bringing a pad and paper to write down scientific names to research later. When I was at my weakest, my garden, though far from perfect, cheered me. It was a link to life before illness---although I was consistently surprised by what came up where, the bulbs I had dug up in the fall and re-planted with my grandparents one Saturday in December grew into daffodils, iris, tulips and a myriad of other blooms when I needed them most. For those months, my roses looked bleak, as only rose bushes in Mediterranean climates can--they're just not quite sure if they should be ready for snow or sun, and each week surprises them until it is officially spring and they can bloom with abandon (as they are doing now).

Right, I was talking about the garden center.

Today, for an hour, I dreamed of filling my garden with new plants. On the way home, listening to my iphone on shuffle (which, by the way, I should do more, because no one is more surprised by what comes up than I am) I realized that I spend most of my time trying to, well, fill my time. This wasn't difficult when I was student teaching full time, going to class nights and weekends, trying to spend time with friends and Young Life kids, fitting in my hobbies as often as possible, and driving my way through 2 tanks of gas each week. But since my kidneys decided to, well, fail on me, my life didn't seem nearly as full. My time has been "filled" with television, reading blogs, and researching my disease, but it didn't feel full. And, quite frankly, I was upset about it. I've spent the last two months waiting for my "real" life to start again, upset that kidney disease put a damper in my plans. My optimism stuck around only as long as I had hope of getting back into my groove again, back into my full life. To make a garden metaphor, to dig up the weed of kidney disease and replace it with all the old things I loved doing.

But I realized today (about 11 weeks late, mind you) that this bout with kidney disease is always going to be part of the garden of my life. At first, I thought of it as an invasive weed that was choking out my other interests, drawing me away from friends and activities. The kind of weed that crops up everywhere, no matter how many times you think you've finally gotten rid of the last seedling. My research on Nephrotic Syndrome made me nervous of relapse, convinced, for a time, that I would forever be worrying about sodium and swelling. As time passed, and I responded to the evil-drug Prednisone, my fear of relapse has decreased, and I'm currently thinking that kidney disease may not be an all-consuming weed after all. Instead, it's a part of my garden that may not be as pretty as the rest, certainly not a plant anyone else would choose for their garden, but it's there, filling space. It's impossible for this experience to not leave an imprint on the rest of my life.

And I'm starting to realize that I want to let it change my life. Right now, I'm making fewer plans because I'm not physically capable of doing more, but when I'm back to my baseline standard of health, I plan on doing less and letting the important things fill my time and my life. I claim to serve the God who, in a flight of pure poetry, filled the earth, and with each creation, each filling, declared with surety that it is good. The events in the garden led to the brokenness of illness and death, but surely the God who can create good things, can redeem even an illness and make it good. Surely the God who has blessed me abundantly, more than I could ever hope or imagine, can direct me toward the people, ministries, and occupations in which I can do the most good. Surely the God of the universe can fill me and my time better even than I dream.

Wednesday, April 23, 2008

Failure

Failure is a silly thing to be afraid of. Everyone fails at something. IN fact, almost everyone fails at almost everything they try. I remember telling my mom when we drove home from college one summer that I was terrified of failing (not being rejected, but full on flat-on-my-face failing), but the only example I could give was of failing to train our horses.

Is it failure if you don’t put your whole heart into it? And if you don’t put your whole heart into it, aren’t you setting yourself up for failure? My horse Sky was terrified of being tied up to our hitching post. This may be because, right before we bought her, the farrier had cut her hooves too deep and caused severe pain. Our friends (who found her and kept her for us while she recovered) said she might be lame, but it was worth giving it a shot. She had her quirks, one of which was taking off at a full speed gallop when I got off to take a picture, but I loved that horse. I did, however, fail to train her to the point where she would walk docilely to the post. I didn’t give her all of my time---there were boys and classes and movies to see, and so, in a way, I guess I failed to give her the best possible training. But now, I don’t really see that as a failure.

I use the word failure often these days. Almost nonchalantly I inform people that a few months ago my kidneys failed but I “responded to treatment.” I’m not afraid that my kidneys are going to fail again—I know what I can and can’t do, and I know the warning signs to keep me from reaching Stage 4 again. (There are 5 stages of Kidney Disease/Acute Renal Failure—in stage 4 you still have a fighting shot at not ending up on dialysis or with a transplant—I gladly took that shot)

I want to live the rest of my life not being afraid of failure. Heck, if a major organ was able to fail and come back from it, I guess I can bounce back from a little rejection or failure.

I want to be able to apply to graduate schools again, knowing I’m a different person and the person they rejected last year has grown up quite a bit. (And will continue to grow before I’m ready to commit to more school)

I want to be able to audition for anything from the local theater’s production of Guys & Dolls to American Idol without thinking that if I never tried I’d still have the ability to say “I could do that”

I want to have the courage to end friendships that hurt me, and nurture the friendships that help me grow.

I want to have the strength to finish strong in this Master’s Program, however long it takes me.

I want to be able to reach out to people who scare me, whether it be by applying to teach in scary neighborhoods or just looking a beggar in the eye as I fumble for change.

I want to get into a romantic relationship without my escape plan already planned out.

I want to be able to start a project, finish it, and not question whether or not I should have done it differently.

I want to sing using my real voice. The one I keep hidden 99% of the time because it’s okay if I fail when I’m borrowing someone else’s style and tone, but not if it’s just me.


I want to live my life without fear. That doesn’t mean that I’ll abandon common sense (most of the time), nor does it mean that I think a life without fear would be a life without pain. But Walter Blythe (Anne’s son) once said (in a favorite book of mine Rilla of Ingleside) that *paraphrasing here…. The fear of pain is so much worse than the pain itself. I think that’s true of my fear of failure. My fear of failure has kept me from things I’m already good at, and things that I’m terrified to try because they are things that I might not be good at.

Friday, April 18, 2008

For Such a Time as This

I love the story of Esther. I love that her story points to the great love God has for his people, that he provides even for those far from the Promised Land. But mostly, I love God's timing and sense of drama. In a world without internet and cell phones, things happen pretty quickly-they have to or the Jews wouldn't stand a chance. It's just a good story.

There have been several times in my life when I've had moments where I've said "A-HA! This is why I'm on this planet--for such a time as THIS." Long talks over coffee or sitting on a log at camp, watching a student understand for the first time and hearing those beautiful words, "hey, this is easy!" or just relaxing after a meal with friends and family, singing around the piano. I have never doubted that there was a purpose for my being on this planet.

But why THIS? After 2 months of being sick, and having very few of those moments, it's so easy to question what the point of this could possibly be. I'm 23 years old, love being around kids, sharing the gospel, teaching and singing. How can my sitting in bed glorify the God I claim to serve? Even now, as I type this, I don't have an answer. I've been reading some of Amy Carmichael's writings, and received a book of stories of godly women from a dear friend. I think I'm learning, slowly, that I don't have to *do* anything to be glorifying God--being in right relationship with Him is far more beautiful than being a busy bee, serving others.

Don't get me wrong. I would love to be back to my old self, because I think she was pretty neat--she really cared about the people around her. But more often than not in my life, I have equated serving others with serving God. Call it a Mary/Martha complex, if you will. I have grown up in a house where my parents have given generously, have modeled hospitality and have loved others with an abandon that still takes my breath away. What I'm now grasping, is that the love and care they have for others stems from deep within, from their relationship with Jesus Christ--the firstfruits of a love so 'deep and wide' that little 4 year old arms could never stretch enough to describe it.

I can't *do* very much for others right now. That doesn't mean that I can't grow into the woman God has planned for me to be while sitting in bed. My mind and hands are restless because of my medication, but my heart is restless because it knows it has much to learn before I can claim to be in right relationship with the One who promises peace; His stories, so filled with perfect timing and that sense of drama can continue to lead me down the path of understanding.

Thursday, April 10, 2008

Cranberry Orange Scones

The restless frenetic energy of prednisone, coupled with my recent obsession with the food network and food blogs has led to some surprising successes in the kitchen. While not as gratifying as getting an A or watching a student 'get it' I must say there's something amazing about cranberry orange scones.

Not just any cranberry orange scones--gluten free cranberry orange scones. My mom is allergic to wheat, but not so allergic that she doesn't try and eat all the breads I'm trying--she just feels ill afterward. So I decided to make her scones.

The recipe I had was for typical wheat scones, and included a hefty amount of butter and buttermilk--neither of which I can eat on my current doctor-imposed diet. So, with a little online research I decided to try subbing butter and buttermilk with fat-free cream and cottage cheeses. *Note-in the past my substitutions have always turned out very badly* Because of my vague understanding of the science of baking from watching hours of Alton Brown 'Good Eats,' I decided to just keep adding the dairy products until the dough looked like it usually does when I use butter.

Using the Kitchen-aid in my spotless pantry, I watched as the dough turned to perfect scone consistency. In triumph I added the orange zest and dried cranberries. I was convinced that I had succeeded.

Except I hadn't. At all. The flour mixture I used contained bean flours, and even the zest and cranberries couldn't cut through the acrid taste. Bean flours are great if you're making an artisanal bread---not great when you just want to taste sugar-ey goodness.

With my energy flagging, I glanced around the pantry to find something to save my concoction from the compost heap. Triple-Sec. I like Rum Cake. Why not add a touch of citrus flavored alcohol? It was worth a try. I added about a shot and tasted the dough. Better.

By this point, I had been up and moving for more than I ought to, so I wrapped the dough in wax paper and popped it into the refrigerator, from whence I retrieved it and baked it today.

And they're good. Really good. If you've had the ones at Starbuck's that are a bit too dry and taste vaguely like preservatives and cinnamon, you need to try one of these scones. Unfortunately, I will never be able to recreate the recipe, because I simply started throwing in what looked about right. And that's really the problem with baking, you never know when a disaster will end up being a masterpiece.

Saturday, April 5, 2008

A Dangerous (?) Addiction

Prednisone is a wretched drug. I'm counting down the days until I'm not on it anymore. The side effects are wretched, but it saved my life, so yeah. I'm not addicted to Prednisone.

I'm addicted to foodporn.

At the nail salon today, the Food Network was on silent as Kenny G's saxophone wailed in the background. Paula Deene came on, and within 5 seconds I turned to my mom and told her which episode it was from. I have a crush on Alton Brown (the nerdy one from 'Good Eats) that far exceeds my celeb-crush on JTT back in elementary school. I want to be friends with the people at Charm City Bakery and I watch Ace of Cakes with jealousy and awe. I could watch 'Follow that Food' on the Fine Living Network for hours--the combination of travel and food makes me itch to try the new dishes. Even before I got sick I would try the recipes from that show and curse the fact that my Guinness Roasted Potatoes weren't as pretty as those on the tv or the fact that we didn't have fresh creme fraiche for my homemade tomato soup.

I also discovered, horror of horrors, food blogs. Shauna from "gluten-free girl" helped me get through the days of no-sodium--I read a year's worth of archives and I'm still browsing through her recipes to find treats for my mom. (Who is allergic to wheat) From there, I've moved on to most of the people she has linked, revelling in the pictures of food, imagining the recipes. I judge these bloggers by their photographs, by their ability to blend their love of food with recipes that make me want to rush to the farmer's market. I've laid in bed for countless hours in the last month, transfixed to the screen, wanting something I can't have.

Which is why I call it foodporn.

One of the less painful/annoying side-effects of Prednisone is it makes me hungry. All the time. If I'm not hungry, I assume there's something wrong--and thus far, this has proved true, meriting my return visit back to the hospital and some changes in sleeping medication. But back to the feeling like I'm starving part. I eat at least 5 meals a day. Not weight-watchers friendly snacks, but meals. When I'm strong enough, I use my strength to allow my brain, that is filled with potato cakes and frittata and polenta and ciabatta bread and tapas and stews and pasta sauces and pad thai and stir fry, to flow through my hands and into my belly. When I'm not, I eat cereal, yogurt, fruit, veggies or whatever my mom brings me--she who claims to be a poor cook has created meals and snacks according to whatever diet the doctors had at the time. But she and I are both glad on days that I have enough strength to putter and chop and knead and saute and stir fry.

Kristin & Greg gave me an Amazon gift certificate for my birthday. I used it to buy Christian novellas, rose trimmers and a cast iron wok. The first day I could stand for more than a few minutes I made a ginger tofu stir fry that makes my mouth water. Although I read the novellas within a couple of days and have slowly broken in the trimmers on my roses, the wok feeds my addiction. I used it on Wednesday to make fried rice, and then I made it into a fried rice soup. In the wok. Excellent.

After my doctor's appointment today, and the news that my cholesterol/triglycerides are still chilling in the stratosphere (but have come down from the ionosphere, so that's an improvement), I need to continue to avoid fats. Which means my brain is bursting with bacon recipes, and it seems that almost every Paula Deene recipe I see calls for Crisco. Every so often I get visions of watching The Biggest Loser with Christy, while Katie & Maia ate Easy Mac and Sharee wandered in with a bowl of noodles, and wonder why I wasted so many moments in college eating chips for dinner when I could have been making Basil Salmon in Puff Pastry or Fresh Coconut Ice Cream. Oh that's right...we had no money for food. And though I never went the Cookie Dough roll for a day (as Ben did our freshman year) or the Red Baron route, I am sad that I've spent so much of my life eating Pizza rolls and corn dogs. I'm also sad that before all of this "research," I made so many mistakes--the roasted chicken that was 4 lbs heavier than I'd used before and thus led to making Allison's guests wait for over an hour, the tuna casserole I subbed Vanilla Soymilk for that my roommate Brynn watched me choke down as leftovers for a few days, the innumerable batches of cookies, biscuits and breads where I tried to "improve" on the original recipe. I've learned so much. In my week "vacation" at my sister's house, I enjoyed her ability to make me delicious meals with seemingly no effort. For her, I think it's natural--I needed more research.

7 weeks ago I had 40 balls that I juggled (poorly) soaring through the air. These days I spend a lot of time thinking about food.

Thursday, April 3, 2008

Lists

Things I'm glad to report:
1. My Serum Albumin was 3.5 then 3.7 this week *translation- the protein I was losing through my kidneys is staying in my blood
2. My BUN and Creatinine are back to normal *translation--kidney function is normal
3. Post-ATN diuresis is slowing down *translation--I'm not losing 6 liters a day anymore and having to try and drink that much
4. Dehydration/Electrolyte Imbalances are under control
5. I saw friends and Young Life kids a few times in the last week--yay Young Life
6. I bought myself a Wii for my birthday to use as Physical Therapy

Tough Numbers
1. It has been 45 days since I first went to the hospital
2. I have seen a friend(s), in person, 14 of those days
3. I have been on high dose Prednisone for 45 days
4. In 11 days I get to start tapering off
5. If I don't relapse, I should be down to normal doses in 60-80 days
6. If I don't relapse, I should be down to low doses in 6 months
7. If I don't relapse, my immune system should be normal in 14 months

Things that make me smile
1. How my tulips are beautiful and my irises will bloom soon
2. When my dog tries to drink the water from the jacuzzi while it is on
3. How clean and organized I can make everything
4. When friends text or call to talk about something other than my health
5. How Disneyland has taken handicap accessible and made it handicap friendly--making using my wheelchair more of a joy and relief than a
6. Watching my dad play Wii Sports

Things I plan on doing in the next month
1. Cooking a meal from every continent
2. Working in my garden
3. Working on my novel
4. Researching for a thesis--new thesis maybe?
5. Being able to drive again
6. Walking a 1/2 mile
7. Not going back to the hospital
8. Finally putting up pictures on the wall
9. Scrapbooking?

Friendships

While listening to a sermon on Job yesterday, I grew increasingly frustrated. Not my old frustration with Job, that it's a story that I can learn from and that has a lot of good lessons for everyone if you can just muddle through the language, but a true frustration with Job's friends. In the past, I was able to dismiss them as just being really bad friends--the kind you should walk away from if ever things get bad. Tim Keller helped me see that Job's friends were either cynical or moralistic...a pretty good example of the reactions I've received. He talked about how everyone says the wrong thing in response to another's suffering. Now, in the past week I've laughed at the websites with lists like "Top 10 things not to say to a person who is sick," but it's true. No one knows what to say--or what to do.

Prednisone is a wretched drug that makes all the bits I don't like about myself come to the forefront with a vengeance. My tendency to want things to be neat when I'm upset has now turned into an obsession with organization. My tendency to despair without a visible goal has turned into an understandable depression without a focus on finishing school and applying for teaching jobs in the fall. My tendency to retreat inward instead of letting people see my pain has, to my detriment, succeeded in virtually cutting me off from everyone except the most persistent of friends and family.

In the past, when I realized a group of friends had failed me, or was, as I liked to term it "leeching" and not pouring back into me, I would bow out gracefully...slowly but surely removing myself from the scene. I have several very good friends that have consistently been there when I needed them, but ours aren't friendships that require seeing each other every day. It's the interim friendships that are hard to lose--the ones I saw several times a week before getting sick, that say well-meaning things like "If only you lived closer I'd come visit you." My immediate reaction is, "A HA--I am a better friend to them than they are to me, I should continue my retreat." Thankfully, my mom is a wise lady and reminded me that we should always try to be better friends than what we receive in friendship from others.

What a hard statement that is! My immediate reaction when reading Job is to make it as personal as possible... to name which of my friends has been a moralist, which has been a cynic, which has discouraged me in their attempt to figure out what God has planned in all of this. In a way, that's the Job story I remember. But this book contains the essence of what I believe; God shows up and reminds Job of how very big God actually is. In beautiful poetry the strength of God's power, nature, and person are defined. Keller reminded the listeners that it's just as arrogant of us to say that God isn't involved in something as it is to say that we know why God is doing something. (He was far more eloquent, but hey)

I have no idea why I'm the one who is sick. My mom wishes it was her and makes statements about how much more sense it would make if it was her often. I had a friend tell me over a month ago that of all the people she knows, I'm the one that can handle this the best. I chose to take that as a compliment. I've tried to say "well, this will make me a better teacher because ______" Other people around me have tried to say that this will give me more *insert positive trait here* In all of this, we as feeble human beings are trying to wrap our little minds around something that, by nature, we can only see an iota of. The truth of the matter is, we live in a world that was broken by the entrance of sin. That brokenness manifests in cruelty, in evil, in death, in fear, and in sickness. I believe that my God did not think of me before the beginning of time and create me to be sick or even to die. I was created to live in perfect Harmony, and because of what Jesus did on the cross, and continues to do in my life, I will get through this aspect of our broken world, and I will experience that Harmony.

At Young Life camp last summer, I was explaining to one of my girls the difference between Heaven and Hell. If Hell, like CS Lewis says in 'The Great Divorce" is people moving farther and farther away from each other, isolating themselves from others because they've chosen to isolate themselves from God, then Heaven is like the best party ever. Perfect unity with God and other people. No crying, because there's nothing breaking up the harmonies. I told that girl the truth, that I like her a lot, even love her, and want to party with her someday.

Part of me can't wait until a time when my friends don't have to try and say the right thing, when I won't get frustrated with myself or others when I don't see them as much as I'd like, when we just get to party together in perfect harmony. The truth is, I can't think of a single person I've come in contact with in my entire life that I don't want to enjoy that party with someday. And as much as it sucks to be sick, and even though this could be something I deal with for the rest of my life, there are people that need to know what Job knew and what I'm learning--being in conversation (even when the conversation mostly consists of me asking why) with the God of that party is worth it. I'm not done here because I still have friends who don't know about the party. Job never turned his back on God--that's how I want to be remembered. Oh, and Job's friends? The last bit of Job 42, right before God restores Job's fortunes, God tells them that Job "will pray for you." May I be one to pray.

Saturday, March 29, 2008

What I Need in a Friend Right Now

Someone to actually visit me and not make me feel guilty for living far away

Someone to call or text to say hi, even though sometimes the Prednisone makes me not want to talk to people because I know I’ll say terrible things because I don’t really have a filter when I’m tired.

Someone who, instead of saying, “I’ll come soon,” gives several options of when they can visit and doesn’t give up when I’m indecisive. One of the side effects of prednisone is that I’m anxious most if not all of the time, and for me that translates into not being able to make decisions. I don’t care if you schedule to come see me in 2 weeks, just tell me that you’re coming so I have something to look forward to.

Someone who will call me and tell me about their day, remind me that there’s life beyond my house and tv and the internet. Pretend everything is normal and just talk to me. I’m weak, I’m not dead. If I’m too tired to talk, I’ll tell you.

Someone to send me verses and encouraging texts. I know it sounds terrible, but it feels like everyone was really supportive when they thought I might die, but now that I’m alive, and not serving everyone around me, it’s like I’ve slipped out of the collective consciousness. I feel guilty asking anyone to come see me or call me.

But I’m so depressed. I’m so lonely and tired of being tired. I’m terrified that when we start reducing my medication on Monday I’ll relapse and start losing proteins and swell up again. But I can’t wait to reduce the prednisone, because I know, at least in part, it’s causing my weakness, and fatigue, and depression, and anxiety, and sleeplessness, and dizziness, and acne, and moodiness and headaches, and pain, and shaky hands, and ravenous appetite and dehydration and electrolyte imbalances and the other ones that aren’t hitting me all the time, but come and go. Would I rather be on dialysis? No. Would I rather go back to being huge? No. Do I know that this, too, shall pass? Yes.

But it’s been 2 months. 2 months since I was able to call up a friend and plan to meet for coffee or go hang out with my Young Life girls. The hardest part about this is that I didn’t realize until last night that this isn’t just something I need to bear for a season, that will go back to normal as soon as I regain my strength. I’ve changed. I’ve grown much closer to my parents and my sister and her family, and I’ve watched in awe as my best friend drove 4 hours in the rain to see me in the hospital and then I have no idea how many hours to be with me on Easter. Another friend spent hours with me the evening before her finals week because I needed her, so she came. Another friend spent an afternoon of her spring break from med school just chilling, and has been consistent in her check-up calls. I have 3 really good friends. That’s a pretty cool thing.

But it hurts because I thought I had more than that. I thought I had been a good friend to more people than that. I know it’s awful to visit someone when they’re sick, especially in the hospital, and I appreciate those friends. I know it’s hard to call someone up that you haven’t talked to in a while and pretend to know what they’re talking about when they try to explain what’s wrong, and I appreciate those friends. I know how far away I live. I know it takes awhile. I just thought I was worth going out of your way for. That’s really what it comes down to. Because of this disease and the mind-numbing brakes that were put on my life, I’ve changed enough to see that I’ve made a life out of going out of my way for people, and those 3 friends---the ones I’ve had for at least 15 years each, are the only ones that really go out of their way for me,

I don’t want to guilt people into calling me or coming to visit me. Or maybe I do. I just want you to realize that this is really, really hard…and even though I’m improving, today was still harder than anything I’ve faced before.

I don’t want to make people feel bad when they see me or call. I give only the positive things. No one wants to hear how many minutes I can only walk a day before my legs give out, when I can put a positive spin on it and mention that I baked this or organized that, not mentioning that it took 3 hours in bed to recover from the 30 minute activity. I hoard my energy for trips to town, because the car trip can be torture, and I know it’s better if I use the cane over the wheelchair because people feel less upset then.

Everything, and I do mean everything, makes me tired. A shower uses up a quarter of the day’s energy, and usually requires lying down for awhile to make sure my heartrate goes down. I weed my garden for 15 minutes and am ready for a nap