Sunday, August 28, 2011

Surviving Irene

The Big Blow arrived and it was more like an asthmatic wheeze. Our only disaster was a candle that overflowed the ceramic pottery in which it was contained. I lit it last night in case the power went out, so that I wouldn't be crashing around the apartment searching for my other hurricane items, basically candles since all our flashlights are safely tucked away in Jeffersonville and there wasn't a flashlight to be had in my neighborhood for love or money.

Yes, there was wind and rain, but no more serious than an ocean storm, of which I have experienced at least 50 or so. I am an East Coast Girl. Speaking of which, how many places get to experience an earthquake and hurricane in one week? Both were pretty lightweight by anyone's standards, but still. We're due for a volcano but I don't think we'll squeeze that in by Tuesday. Volcanoes are a long time in the making.

One way I spent my time was writing emails to people asking them to support my run for the Leukemia and Lymphoma Society. I made $450 today! I'm 95% to my goal.

Virtually nothing is open today, including the subways. Commerce in Manhattan is dead. I took a walk and was amazed that the only stores in business were small grocery stores and newspaper stands. You cannot find milk, bread or water. Speaking of water, I forgot to fill my bathtub with flush water. I did, however, fill it with gin. I'm a poor survivalist.

Actually, I'm quite good at surviving. Marty voluntarily left me here alone (save for Turbo), and drove upstate with Harry yesterday. He kept saying he felt bad leaving me alone during such unpredictable times, but knew I'd call someone if I had an emergency I couldn't handle. I don't know how good I am at emergencies, but I'm extremely adept with handling whatever is blown my way.

Wednesday, August 24, 2011

Another Day, Another Symptom

In an effort to cross-train, I dusted of my bike and went for a ride. As I was churning up a big hill, heart bursting, I decided to take a granny break. Never heard of granny breaks? Years ago, we went on a 26-mile bike trip in Vermont, and that's what they called it when you got off your bike for a breather. I decided to take one, couldn't lift my leg over the bar and crash-landed on the gravel/grass shoulder, doing one of my notorious rollovers where I live to tell the story.

A scraped palm and some gravel pitted in my knee were all I had to show for my tumble. I wish I could say it was a freak accident, but the truth is, I'm weak and clumsy. The remainder of the ride I managed to do upright and in control.

I must have done some internal damage though, because a day or two later, my side ached and I couldn't take a deep breath. Certain movements were extremely painful, and deep breaths, coughing, sneezing and laughing were out. It's improved significantly; I'll be more cautious in the future.

I'm a normal person with everyday physical complaints. I have kidney stones and I wrenched a muscle in my back. There's nothing like pain to get your mind off dry eyes, leprotic skin, muscle weakness, tendon tightness and mysterious liver issues.

I'm pretty lucky. You're lucky, too, because I was going to bore you about plate tectonics in wake of yesterday's "East Coast" earthquake. In relation to personal quakes past, this was underwhelming.

Friday, August 19, 2011


My abdominal ultrasound showed no abnormalities with my liver, etc. but it turns out I have kidney stones. That explains the intense pain I get in my side once or twice a day. My internist diagnosed gastritis a week ago and put me on Prilosec, which naturally had no effect. 1000 mg of Tylenol seems to do the trick, although my liver doc says to limit my intake to 2000 mg/day. If for some reason I go over the limit, I pop an oxycodone and stay out of traffic. I'd rather be a little stoned now and then than in pain. I've had enough pain.

My doctor wants to do a biopsy of the liver to confirm gvh and proceed from there. I may have to increase the dreaded prednisone. Currently at 10 mg, I'm hanging by a thread anyway. My skin has a leprotic look to it, although my face and trunk have been spared.

In the meantime, I'm in the country training for the marathon and wrestling with the gangly shrubbery. I think I'm winning. Today I hope to get out there and weed the perennial beds. I have a foam cushion for my delicate knees. It beats trying to squat or bend over and risk looking unsightly. You never know who's peering out their window at my backside.

Monday, August 8, 2011

Happy Birthday to Me

You'd think that realizing it's your second rebirthday would be effortless. Come on, I'm 2. Give me presents and a yummy cake and I'll be happy.

Love Your Liver

I really like my new hepatologist (liver specialist), however, I hope ours is a very short relationship. I'll have blood drawn today for every virus known to man. Of particular concern, is my ALP number, alkaline phosphatase. This is a measure of bile duct blockage. I'll be having an ultrasound of my abdomen to check for abnormalities, although the doctor couldn't feel anything unusual. She did take me off Lipitor since that can adversely effect the liver.

It's strange to think my liver might be in worse shape than Keith Richards'.

Thursday, August 4, 2011

A Day I Don't Reach for Ativan

I was proud of myself yesterday. My doctor's office called to tell me I had an appointment scheduled with a hepatologist, a liver doctor, for Friday. I asked the receptionist why, but she didn't know. My doctor was supposed to get back to me but as of now, has not.

My first reaction was a sinking feeling in the pit of my stomach. Many of you know what this feels like. I went on line and researched what hepatology is. A hepatologist treats liver diseases and disorders. I know my liver issues relate to my transplant, and that the graft versus host disease that plagues my body tissues means my donor is doing his job. I'm coming up on my 2-year anniversary next week, a milestone. I remind myself of this every time my eyes get so dry I feel they're being poked with needles, or my body swells with an extra ten pounds of water.

These problems haven't slowed me down. I spent a week in France and Spain with my daughter last week. The France part was relaxing since we stayed with friends at their country home outside of Toulouse. The 2-day Barcelona whirlwind almost did me in, but I had fun and managed to survive. We ate a lot, walked a lot and saw some amazing things.

After a week of not training for the marathon, I went to a hill workout Tuesday night and walked away without limping. I plan to run for 45 minutes this morning while it's still cool. I'll let you know what Dr. Liver has to say.