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.

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.

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.