Wednesday, March 31, 2010

Enemies of Creativity

One of the very first songs I learned as a child and have taught to my own children is the LDS Primary song, "I Am a Child of God." My faith in this simple tenant permeates every corner of my life. Mankind - all sons and daughters of a loving Heavenly Father. And a Father who is the most creative being of all. As his children, our very existence is dependent upon following in our Father's footsteps.

The ability to create comes in a billion different ways - as many ways as there have been individuals. Some are easier to see - Michelangelo, Beethoven, da Vinci, Einstein, Benjamin Franklin, Mikhail Barishnikov, and all those whose creations are so big, the whole world notices. The vast majority of us create in much smaller, but truly no less significant ways. The teacher who creates an environment of learning for her class, the father who creates bonds with his children playing catch every evening, the mother who creates a home full of love with all her little efforts and attention to detail. The mentor who creates opportunity and a boost of self-esteem for those he teaches. The children who create lasting friendships by learning to share and get along with others. All are evidence of our creative nature.

But, there are always enemies lurking, some of our own making and some completely beyond our control, that thwart our creative natures. Lack of confidence, low self-esteem, lack of time, infertility, depression, pain, pride...the list goes on, with probably as many enemies as there are ways to be creative.

Six months ago, I would have said my main enemy was lack of time. Always more ideas and plans than hours in the day. I've experienced some low self esteem creative blocks here and there in life, even a bit of postpartum depression that knocked me for a loop for a while. Pain and fatigue have been the main enemies the last few months.

My current enemy now has a name: Wegener's Granulomatosis. It is a slightly daunting enemy - I'd much rather deal with lack of time, lol.

My kidneys already have some involvement - we were hoping it was the mild form without renal issues, but the docs are at least cautiously optimistic that we have caught it early and the involvement is still at the low end. And so I am up typing this all out at 3:20am - we bring on the big guns, pharmaceutically speaking, later today. I must admit to being more than a little anxious and sleep has been a bit elusive of late. Cyclophasphamide will be added to the Prednisone I started on Thursday and the induction period will probably last more toward the 6 months as described in the article linked above. Once we've kicked this enemy into remission, another year or so of maintenance on methotrexate (or possibly, azathiaprine.) Prednisone use will hopefully be tapered to a minimum. Lots of risks with all these meds, some pretty nasty possible side effects (so vain that I thought of losing my hair almost first thing!) but I'm so very glad for the advances in medicine that have turned this diagnosis from an almost inevitable death sentence to one that most now are able to live with, and live pretty normally when in remission.

This is my new fight. I will absolutely figure out how to deal with this and get back to my creative roots as well. It may be awhile before you see much that is creative here on the old blog...or maybe it will come soon. I hope for that! I miss it and I have a feeling that finding a way to be creative through all of this will speed the healing. Allowing and following our potential for creation lifts the spirits in more ways that we can imagine.

May I leave you with this video clip, a favorite talk given recently by the LDS Apostle, Dieter F. Uchtdorf. Even those who do not follow the Mormon faith will find his words inspiring.

Sunday, March 14, 2010


I don't think vulnerable would describe loss of smell or loss of taste. I'm experiencing a bit of the latter, and while it certainly makes for some very bland eating, it does not in fact make me feel vulnerable. I can imagine missing all the wonderful smells I enjoy - rain on the dirt in springtime, fresh roses, vanilla, cinnamon, baking bread, new babies. Of course, there are a few I wouldn't miss - driving by the paper mill, the road kill skunk or the flatulence that tends to build up in a house full of boys. But other than the occasional burning dinner or whiff of something somebody stepped in, it would seem to be more of a bereft feeling, rather than feeling exposed or defenseless.

Taste - definitely miss it! In fact, I'm down almost 15 pounds because I have no desire to eat. Everything tastes like cardboard. Life would be truly less enjoyable (but dieting would be a heck of a lot easier) without the succulent taste of chocolate or cheesecake. After experiencing this for the past couple of weeks, I definitely have greater empathy for my brother who lost his sense of taste due to a head injury last year.

But the other senses? Hearing, feeling, seeing - their loss seems to have a much greater impact. And I feel vulnerable. Unguarded and somewhat unprotected. You never realize how much you depend on all the little verbal and auditory clues every day...until they are gone.

I can't hear my children. I can't hear Mason calling during the day when no one else is home. I can't hear their chatter at the dinner table, can't eavesdrop on their bedtime conversations. I can't even hear when they walk in the door.

I can't hear the phone ring, though I can just barely make out what someone is saying if I press it tightly to my right ear. I can't hear the doorbell or a car on the gravel driveway. I definitely depended on those sounds to know when I had a visitor, or the mail lady had a package or UPS was bringing something fun.

Michael came home for lunch the other day, something he doesn't often do. He was home for almost 10 minutes, sitting on the other side of the room from me before I even noticed. Vulnerable -absolutely! Speaking of Michael, he is a super sound sleeper. He never hears the kids, never has. Even when they were babies, he slept right through all the middle of the night adventures. I worry now, because I can't hear anything. I was the one with the supersonic mom hearing, attuned to even the slightest moves of my children in their upstairs bedrooms. So far, Micah had the stomach flu (all over his carpet - UGH!) and Max had a wet bed twice - and no supersonic mom to help them out. Micah said he told Michael - he didn't even remember it the next morning when I discovered what had happened.

Can't hear the washer/dryer when they're done. Can't hear the beeping of the fridge if I don't quite get it closed. Can't hear the oven timer, water dripping, a car not sounding quite right. I wonder sometimes if I would hear the fire alarms if they went off.....

Mostly though, I miss conversation. Everybody, except for Max, has pretty much given up trying to talk to me. Mason get thoroughly frustrated with my inability to hear him and tends to scream...and then walks away. The older kids just don't bother. It is hard to be the mom, that all-knowing, all-powerful dispenser of wisdom and chocolate chip cookies, when one of the means to maintaining your super powers is suddenly stripped away. Vulnerable, definitely.

Friday, March 12, 2010

Pity, party of one

It's been 5 weeks. Well, all told, the feeling bad, not being able to breathe, why-am-I-still-sick started the second week of October. We tried a round of antibiotics, then allergy meds since it just kept going and going. Then more allergy meds of the prescription variety with a nasal steroid and back on Azythromycin.

Chest x-rays were clear, despite pain when taking deep breaths. Sinus x-rays were clear as well, despite the continual congestion.

And then, BAM! Ear infection from H-E-double toothpicks. It appeared WHILE I was on antibiotics. Pain. Oh my, the pain. I have given birth to six children and had kidney stones more than once, and this was right up there. A 15 on the 1-10 scale. More antibiotics - Amoxicillin, Augmentin, then Rocephin intramuscular shots at a pretty high dose. And still, a very active ear infection. My ENT put a tube in the left ear on Tuesday. It has helped some, but wow! I had no clue an ear infection could get so bad.

We did an audiogram on Tuesday as well. Marked hearing loss in both ears, some nerve damage that "may or may not be reversible." I can't hear anything out of my left ear and very little out of the right. I can hear someone talking on the phone if I press it close to my right ear...but I can't even hear the phone ring to pick it up in the first place.

Oh yeah, the Bells Palsy. I woke up really early one morning last week and went to get a drink. The water just dribbled down my front. I freaked out when I flipped the light on and saw that the whole left side of my face was droopy. I googled (NOT a good plan) before running to wake up Michael (think stroke, mini-stroke, TIA...scary stuff) but Michael calmly assured me that it was most likely pressure from the infection on the facial nerve. The doctor put me on a tapered course of Prednisone to deal with the swelling, but resolution could be weeks or months. In the meantime, I can't close my left eye and my lips feel like I just came from the dentist. My tongue is somewhat numb and everything tastes like cardboard - good diet technique, though, lol.

Now, I'm just playing the waiting game. Waiting to see if the ears will clear up (no more antibiotics for now), waiting to see if I can sleep again, waiting for the palsy to resolve. I had a head CT yesterday to rule out any weird stuff. Mostly, I just want to get back to normal. I want to hear my kids. I want to have the energy to do something beyond dozing on the couch. I want to sleep! I want to feel good enough to finish the layout that has been sitting on my desk for the past 6 weeks!