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.

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.

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)

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.

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.

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.

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.

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.