Dirty Little Secret

I have a confession to make: I am a disgustingly judgmental person. You're shocked, right? People don't know this about me. Truly, most people who know me in real life would never guess. Because I hate this aspect of my makeup, and I really do try to be tolerant and mature and overcome it.

Stop laughing.

There are times it cannot be suppressed, though. Like this morning, while walking the dog. I realized that my lovely, friendly neighbor who lets her sweet dog wander off-leash while she walks the track, is never going to notice when/if her dog poops, let alone clean it up. She didn't have any baggies with her, anyway. What a tool. (And yes, I saw the dog poop this morning. But I was too far away and running too late to do anything about it. Mea culpa.)

And like last night, during the kids' day-camp talent show. The mother of a performer went all postal on the mother of a toddler who was enjoying the performance a little - um- vocally. Said toddler happened to squeal while the stage mother's preshus baybee was stumbling over mumbling some lines on stage, and Stage Mom was such a control freak that she basically ordered Toddler Mom and Toddler out of the room. Yeah, she's someone I'd like to party with.

******

Of course, what goes around comes around. So in the "karma's a bitch" column, I've invited some straight-up judgment on my wee little blog from these folks. They are merciless (and hilarious) and a review of Lemonade & Kidneys will be posted on there on Friday morning.

Start lining up the vodka martinis....

Sentenced

It's over.

Former Delaware County pastor sentenced for 1980 sexual assaults

By Mari A. Schaefer

Inquirer Staff Writer

Christine Kuhn would not give up. From the time she was 13, she told friends, church leaders, neighbors and therapists how her minister had sexually assaulted her.

"Like a dog with a bone, I was not going to let go," Kuhn said. She always hoped someone would listen and take action.

It took more than 30 years.

Yesterday, Gerald L. Klever, 76, of Tucson, Ariz., was sentenced in Delaware County Court to 10 years' probation, one year of house arrest, 1,000 hours of community service, and restitution of $25,000. In May, he had pleaded no contest to rape and guilty to sexual assault involving Kuhn and another woman, both now in their 40s.

The crimes happened in 1980, when he was an assistant pastor at First Presbyterian Church in Springfield, Delaware County.

Kuhn, of Media, might never have had her day in court if not for a twist in the law, allowing Klever to be prosecuted for acts committed between 1980 and 1983, when he moved out of state.

The abuse began when Klever asked Kuhn, then 13, to lunch, she said. He bought her a Burger King meal, took her to his church office, and made her perform oral sex.

"I was humiliated, embarrassed and very uncomfortable," Kuhn said. Klever, she recalled, threatened to falsely tell her mother that she was using drugs to keep her from going to her parents.

When she did tell others, she was dissuaded from taking it further.

"FIDO - forget it and drive on," Kuhn recalled one church member telling her.

In 1988, a retiring pastor told Kuhn that she was not the only person to complain about Klever. Two years ago, Kuhn approached the Rev. Byron Leasure, a new interim pastor at the church.

He then sent letters to congregants asking any with complaints against Klever to step forward. At least a dozen women responded, but only four agreed to talk to police. Of the 15 charges brought against him, Klever pleaded to two counts.

Klever, who walks with a cane, has significant health issues, including early-onset Parkinson's disease, heart disease, vascular disease and prostate cancer. His health was one of the factors taken into consideration during the plea negotiations, according to the District Attorney's Office.

On Sunday during a chance encounter, Pat Circolo, a former babysitter who alleges that Klever took off his clothes in front of her more than 30 years ago, said she saw the former pastor walking briskly in Center City on his way to church.

Yesterday, attorneys for Kuhn and Circolo met with Judge James F. Nilon Jr. to discuss Klever's health before the sentence was imposed.

Klever's attorney, Theodore Simon, said his client was admitted to Jefferson University Hospital the previous week for an "emergency" problem with his heart.

Nilon made a point of telling Klever, who as a condition of probation must undergo polygraph tests, that he could be asked questions about his health.

"If you fail polygraph or violate probation, you go back before the court," Nilon said.

Kuhn, who is a recovering alcoholic, said she felt as if her story has finally been heard and she has to believe Klever is "remorseful" for what he has done to her and others.

She said she planned to attend an Alcoholics Anonymous meeting last night and tell her story.

"I'm going to tell them there are miracles out there," she said. "Don't quit before the miracles happen."

Pot Luck

So much to catch up on! The Good Food, Good Beer event last weekend was a blast. And I think I'm being stalked by a certain rock star blogger's family members. Not by the blogger herself, mind you, but her family members JUST HAPPEN to be on hand when I'm selling cookies. Mighty convenient, no? Many of you will recognize the fine young man in the background, here:



And last spring, we had those famous visitors at the Charity Fun Fair. Coincidence? You be the judge...

The pulled pork sandwiches and Asian slaw were a huge hit. Unfortunately, the event attendees were too busy sucking down the free beer to purchase many fundraising cookies (lesson learned). So, plan B went into effect, and we managed to net $200 by selling leftovers to friends and at our local market. Not too shabby.

When do you think I'll figure out that I always need fewer cookies than I think I do? Yeah, that's what I think, too.

And just to keep it real -- here's what happens when you leave half of the flour out of a cookie recipe.



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I think I need an exorcist, as my husband has clearly crossed over to the dark side. Last Sunday no one much felt like cooking dinner, so I suggest that Michael wrangle some take out. This is what he came back with.



Oh yes he did!!

*******

And last Tuesday morning while walking Theo, I stepped in a hole. Which in and of itself wouldn't have been a big deal, but I didn't SEE the hole before stepping in it. And it was deep, as these things go. I went down like a sack of bricks (again on the ass) and the pain in my ankle was searing. Thank god for the elderly couple who were also walking the track Tuesday morning who stopped and waited until I pulled myself marginally together, and then hobbled me the 100 yards back to my house. Ice and braces and more ice, and that sucker is good and sprained. Lovely shade of purple, as well. I still can't torque it, but I can put weight on it, and as long as I don't forget it's hurt and try to macarena on it, it will be fine.

*******

Last week was full of activity and movement and busy-ness and it was all very full and fun, but I somehow felt I couldn't grasp any of the moments and truly live in them. Too much traffic pounding in my brain, I suppose. The dentist told me last week that he thinks I'm grinding my teeth, and though I'm not aware of doing so, it wouldn't surprise me overmuch. And between the sprain and the busy, I fell off the exercise wagon, which can't have helped. A quieter week awaits, though, and maybe even a good night's sleep. Here's hoping.

No Fair

It's one thing when my body decides that it will no longer tolerate my very occasional indulgence of barbecued spareribs. (Exhibit A: doubled over in pain most of the day on July 6, following dinner at my parents' house on July 5.)

It's another thing when my body decides that it will no longer tolerate my occasional nibble of cheese. (Exhibit B: doubled over in pain most of the morning of July 21, following the nibbling of two slices of Cabot cheddar at bedtime on July 20.)

It's a WHOLE 'NUTHER KETTLE OF FISH when my body decides it will no longer tolerate the periodic crunching of a mini-Butterfingers from the office candy drawer.

Seriously. Who can I talk to about this?

The Vision Thing

Dudes. Guess who's the PKD Foundation "walk visionary" this week? Check it out.

(On the right and scroll down a bit.)

With the monies contributed directly through the web site, checks that I've mailed that aren't yet posted, and the cookie money from this weekend's follies, we're up around $1500. Yowza! Big, fat, wet smoochies to you all.

Edited: It would seem that they're rotating the "featured visionaries" on a random basis. If you want to read my particular ramblings, this should get you there.

From the Mouths of Babes

Just now Michael and I were watching a snip of the movie "Hairspray" on TV when Garrick wandered in. He took one look at John Travolta up on the screen and said, "That looks like Ina Garten."

My boy scares me.

Dudes. Cookies.

Oy, my feet hurt and I have too many leftover cookies. Any of you lovely local readers want some, let me know!

Off to bed.

Don't You Wish You Were Me?

The only thing more fun than carefully reading 50+ pages of banking documents associated with a $2.5MIL refinance?

Doing it with construction taking place directly below your office.

Admit it, you're jealous.

How to Start

losing the weight you gained last year:

Finally break down and buy clothes in a larger size.

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A few weeks ago, I was really quite anxious about discontinuing the physical therapy for my back. I'd made such good progress with the twice-weekly appointments, and I was afraid of losing my momentum. And the only way to retain the benefits was going to be keeping up with the exercises and stretching on my own -- a daunting proposition.

As I am easily distractable and prone to procrastination, I have never been good at exercising in my home, preferring gym memberships to provide the impetus (if I'm paying for something, I'm damn well going to use it!). Somehow over the last few years, though, we've managed to put together a very creditable little exercise area in our basement -- recumbent bike, 593-in-one weight machine, stability balls, a couple of hand weights, and a cheap DVD player -- and I knew that armed with a couple of rubber therabands, I could easily replicate all of my physical therapy moves at home.

The trouble is, my full, formal physical therapy cycle took me 90+ minutes to complete, and the prospect of trying to carve out that kind of time at home on a regular basis made me panic. I finally came up with an idea, though: I'd chop my full routine into three portions of roughly 30 minutes each, and do them on subsequent nights. The fourth night, I'd take a break.

With my therapists' blessings, I bid them farewell and I embarked on this plan a couple of weeks ago. Here is what is working for me:

• Day 1 is for stability and strength work.
• Day 2 is for cardio (which I always shirked at PT, because it's SO FROCKING BORING).
  
• Day 3 is for intensive stretching.
  
• Day 4 is for homemade blueberry sorbet and reruns of FLIPPING OUT on Bravo.

I like the four-day cycle, as it means that for every week-long period, I'm usually getting 2 sessions each with the strength training and the cardio. And amazingly, at 2.5 weeks into this program, I'm adhering to it MUCH better than I ever thought I could, thanks to some mind games tricks I play on myself:

• The way I've structured this, Day 3 feels like a freebie. Don't get me wrong, the stretching is critical for my continued pain-reduced state, but it's not like working. Plus, it feels great.
• If something comes up (like drinks with my lovely friend Maureen after work) and I miss a night due to drunkenness, I can call that day Day 4 and just hop back into the cycle the next day without feeling like I've completely fouled up the schedule.
• Our weekday evenings are pretty highly structured: the kids bathe between 7:45 and 8:15, Michael reads to them at 8:30, and they read to themselves between 9 and tuck-in (around 9:45 for the summer). Which pretty much gives me between 8:30 and 9:45 to fit in my roughly 30 minutes of exercise.
• The DVD player is key, as are discs of SPORTS NIGHT (the Aaron Sorkin TV series, not actual sports) and LA FEMME NIKITA (the TV series, not the movie).

What's fascinating to me is that even when I'm feeling whiny about it, I find that if I just get started, I do actually go through the entire evening's routine and feel good afterward. And I'm not above tricking myself into getting started by telling myself that I'm only going to do the mat work tonight, or that I'm just going to do a quick stretch and then go fold the laundry. But once I start, the psychological hurdle has already been cleared, so I keep on truckin'.

My back continues to improve bit by bit, and my waistline is reasserting itself. (Hi, obliques! I've missed you!) I seem to have dropped a few pounds, probably because I'm doing more cardio each week than I was with PT. Interestingly, I'm having fewer pains and pangs in my kidneys and liver, as well. And I just plain old feel better, in general.

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To recap:

How to Start: buy new, bigger clothes, and then trick yourself into starting small.

How to Keep Going: be sure to have DVDs of old TV series on hand. And take the time to realize how much better you feel when you Just Do It.

Fundraising, Part Deux -- Goin' Local!

I promise that Lemonade and Kidneys is not going to devolve into an all-fundraising, all-the-time blog. BUT! I must share this fun opportunity, and invite all you Philly-area types to come on by.

Our local food co-op is participating in the Great Food, Great Beer event in Philadelphia this Saturday evening (July 19), and has invited me to share their table. In addition to providing small cookies for the co-op's tasting dishes, I will be selling my jumbo cookies and baggies of home-made doggie biscuits to raise money for PKD.

The event overall is to benefit the local sustainable farming and slow foods groups, so it's quite a worthy cause, even without the PKD benefits. Ten local restaurants are supplying "tasting dishes" and ten local breweries are supplying free beer with admission. Tickets are $30 for 5 tasting dishes and $22 for 3 tasting dishes. Sounds like a blast, no? You'll find me under the Swarthmore Co-Op banner -- come on by!

(And, pray for me -- I have 500 cookies to churn out between Wednesday and Friday.)

Signs

1. ... that it's been too long since we've used the grill:

Mice, mice, baby.

2. ... that I had three minutes to breathe over the weekend:

Red toes make me happy.

3. ... that Michael still loves me after 18 years:

Instead of sulking at my working late on our anniversary, he feed the kids, did all the dishes, and scrubbed out the scunge that the plumbers left behind in the bathtubs.

Blessed

It was eighteen years ago today that Michael and I stormed our local community theater, hung bunting and set up chairs, filled the space with friends and family, and vowed to share the rest of our lives together in our version of a boho-pseudo-Quaker wedding ceremony. My lovely friend Francine sang, a dozen other friends got up and spoke, and the Mayor of Collingdale, PA pronounced us husband and wife. Even the open septic tank and backhoe on the front lawn of the theater couldn't dim my joy.

Happy anniversary, honey. For two people who were so young and stupid, didn't we get lucky?

I Had the Dream Last Night

You know the dream where you're unprepared for school? I had that dream last night. In my version of this dream, I'm taking college classes and haven't been to class in weeks and don't know which rooms to go to and don't have courses syllabuses (syllabi?). There may be midterms this day -- I don't know. In the dream, I also haven't been to my college mailbox in weeks and so I know that there are things I'm missing and I'm just not ready for any of it.

It took me long moments upon waking to remember that I'm not taking college courses now -- my waking brain first tried to reason that it was summer time and that I had surely taken courses during the first summer session, but now it's second summer session, and I didn't even register for second session, so I hadn't, in fact, missed anything except for registration......

It will not be a surprise to hear that I have been in a stew of anxiety the last few weeks. Big shifts going on at work, household matters being left unattended, a big fundraising opportunity next weekend that I've just started preparing for....... I feel much like that old drug abuse commercial: this is my brain on stress.

Luckily jury duty last week ended up being a non-starter. Now all I need to do is fold the laundry, clean the house, get the plumbers in to fix the major second floor blockage, bake 500+ cookies, weed the garden, walk the dog, do my back exercises, make eye appointments for the kids, pay the bills, email the dozens of friends I've been neglecting, etc., etc.

I think I'll start by taking a nap.

Holy Cannoli, Batman!

I'm going to be tied up all day tomorrow with jury duty (what fresh hell), but I couldn't resist posting the news:

Barely one week into our 2008 PKD fundraising, we have just under $1,000 collected and committed! There is $845 already logged at the Foundation, and there's $150 in checks on their way.

Unbelievable, folks. I'm seriously verklempt. Thank you, thank you.

HALP!

Have been emprisioned by field auditors.

No time to write.

Send file baked in a pie, tequila, and abacus.

You Know You're Getting Old When....

.... you go into a Sephora store and leave without testing any products, let alone purchasing anything.

.... you need to be reminded by your best college friend about the time the two of you hired a stripper for your R.A.'s birthday.

.... the 12-year-old working the coffee counter at Border's calls you "m'am".

.... you spend the weekend in New York and are all the way home before you realize that you consumed absolutely NO alcohol.

.... the cute summer sandals you bought on sale have 1.5" heels, not 2.5" heels.

The Rest of It

First, a big wet sloppy kiss to all of you who read yesterday's post and, instead of rolling your eyes in disgust at my obvious play for your sympathy [g!], hopped on the PKD fundraising link and whipped out your credit cards. Talk about getting started with a bang! I'm all verklempt, and thank you from the bottom of my heart, as do Michael and the kids.

A number of you emailed me some very sensible questions about how I developed PKD and what my future holds, and I thought I'd answer them here. (Knowledge is power, baby.)

The form of PKD that I have is genetic and affects one in 500 people. My father was the first in our family tree to develop it (which is a bit of a mystery), and my brothers and I each had a 50% chance of having the disease as well. Luckily, I am the only one of my siblings who has tested positive.

I was diagnosed in my early 20s but did not become symptomatic until a few years ago, when my blood pressure started to climb. There is no way to know how quickly the disease will now progress. I visit my nephrologist every 8 months or so for new blood work, and I keep an eye on my blood pressure from home. Aside from controlling the blood pressure, staying generally healthy and eating a low-protein diet, there is not a lot I can do at this point to keep a rein on things.

When my kidney function decreases to around 20% (maybe 3 years? maybe 5 years?), my older brother -- who is my only family member who has a compatible blood-type -- will go through a battery of tests to determine whether he would be a good prospect to donate me a kidney. The best case scenario is that he passes the screening, I get one of his kidneys and the transplant works (many don't). I'll then spend the rest of my life on immunosuppressants and hoping that my new kidney won't fail (many do). My father's first kidney transplant failed after 20 years, which is a good outcome -- many only last 10 years (or less).

If my brother is not deemed a good match for me, or does not pass the rigorous health screenings, another option is paired donation. This is a relatively new arena, where kidney patients who have willing donors with incompatible blood types "swap" donors to get a better match. Plenty of unknowns, here, but a good potential fall-back position. This would enable my younger brother to get into the act, as well.

If scenarios 1 and 2 fail, the next step is to go on The List. The statistics of The List are pretty horrible. There are currently 76,000 people in the U.S. waiting for kidneys, and fewer than 10,000 of them receive a kidney each year. The List is growing by roughly 40,000 patients each year, and 4,000 die each year before receiving a transplant. Pretty crappy odds.

Dialysis is a life-saving procedure that cleans the blood in much the way the kidneys do. There are several types of dialysis currently available, each with particular drawbacks. None is a cure, and most people feel very sick while on dialysis. Being on dialysis is very restrictive, and is a way to borrow time, not a way to live out one's life. If my first two transplant scenarios fail, I will certainly have to go on dialysis for some period of time, which I dread.

With regard to the liver issues, as long as my liver function doesn't fail (it doesn't, in most PKD patients) and as long as it doesn't get too grossly enlarged, we will likely just leave it alone. (Alas, I fear my bikini days are numbered.) In some instances the docs will aspirate individual cysts if they are very large or infected, but even going in laprascopically creates some scar tissue and is best avoided. I do know some PKD patients who have had liver resections to remove the most grossly affected portion of the liver, but that's only done in extreme cases.

I am one of the lucky ones -- I have private health insurance that will cover the costs of dialysis and/or transplantation, when the time comes. I have group life insurance, disability insurance, and all kinds of financial contingency planning in place to help cover the mortgage when/if I get too sick to work. I have family members willing to donate me a kidney (you'd be surprised at how often that's not the case). I have a husband who loves me for better and for worse. And I have an incredibly supportive network of friends who cheer me on in all of my hairbrained schemes, and yell at me when I'm taking on too much.

It is hard to feel anything other than blessed.

What It's Like

Ironically, while it's the cysts in my kidneys that are going to cause me the worst problems down the road, the cysts in my liver are what cause me the most ongoing discomfort. (One of the quirks of polycystic kidney disease is that it can cause large cysts not only in the kidneys, but in the liver and pancreas as well.) It is rare in PKD for liver function to be impeded by the cysts (though it can happen); unlike the kidneys, the human liver has amazing powers of regeneration and is therefore less vulnerable to the formation of scar tissue that will eventually destroy all my kidney function.

The cysts in my kidneys give me pain occasionally. They twinge, or pinch, or throb for a few moments, or longer, and then stop. By contrast, I am always aware of the cysts in my liver. They cause a distension of my abdomen and my liver presses against my bladder and lungs, giving me indigestion and often making me short of breath. When my liver cysts pinch me, or burst, it feels like a stitch in my side after a hard run and the stitch won't go away. I have dreams of being pregnant, with vivid phantom muscle memories of the little baby heels and elbows kicking and pushing from inside my abdomen, and upon waking, it takes long moments for me to realize that what's growing inside me is not a baby.

I don't know how big my kidneys and liver are right now. My last ultrasound was over a year ago, at which point both kidneys measured at about 17 cm (normal size for me would be around 10 cm). At that time, the ultrasound tech measured several individual cysts of 6 cm and 7 cm -- each about the size of a lemon. Everything has surely grown since then.

Size isn't really the issue, though. As the cysts in my kidneys grow, they leave scar tissue in their wake, which means there is less and less healthy kidney tissue remaining to do the important work of cleansing the toxins from my blood. More toxins in the blood means more fatigue and less energy -- both physically and mentally.

As of my last blood work, my kidneys are doing about 40% of the job that they would be doing without the cysts and the scar tissue. This isn't too awful -- most people don't have to start on dialysis until they reach about 20%. The question is (has always been), how long do I have before I hit 20%? There is no way to know. Some PKD patients chug along at 40% for a decade or more and then quickly bottom out; some PKD patients follow a slow curve downward through increasing fatigue, nausea, and pain. It remains to be seen.

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Meanwhile, there is work to be done. Public funding for a cure for PKD is an embarrasment. The NIH's February 2008 report shows that annual research spending per patient is $60. That's right, about the cost of an Olive Garden dinner for four. Compare that with the $2,733 spent on research per cystic fibrosis patient or the $1,880 spent per muscular dystrophy patient and you'll see why there is huge work to be done.

The Polycystic Kidney Foundation is an amazing organization which uses over 80% of its budget to directly fund research and provide patient education regarding PKD. They are the only group in the U.S. dedicated solely to eradicating PKD, and last year they funded $4 million in research -- a full 9% of what the NIH spent on PKD in 2007.

Last year, with the help of many wonderful friends and family members, Michael, the kids and I raised $9,000 for the PKD Foundation. (You can read all about it here.) This year, I'd like to make that number an even $10,000. I hope you'll join us. My fundraising page is up and ready for action (and will remain up on the sidebar to your right), and as always, I will post our progress here on the blog. It really will take a village to eradicate this disease, and I'm determined to do so before Quinlan's kidneys start giving him any trouble.

How You Can Help