How to turn 90 minutes and $60 into 840 minutes and $430

It's really very simple. Let your well-meaning, ex-mechanic boyfriend offer to replace your timing belt for you.

YouTube...Pass it on!

Apologies to my non-mormon friends for getting all "inside joke" here...but this made my day awesome:

Oh Cougs!

Another amazing finish to a crazy rivalry game...shouldn't have bet $1.00 to the Ute equipment manger,eh?

Waiting: Day 100

It wasn't a conscience change, but it looks like (in an effort to nudge Karma?), I've moved my hospital bag nearer to the door. Surely that's all that was needed to get this show on the road, right?




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Gentle Giant

I have vivid and awesome memories of my childhood...and those memories cloud my real-time perception. In my memories, my brother John is scrappy and little. When I think of him today, I see a 7 year old kid with curly hair and skinny arms, so when I see photographs like this:

well, the hair is still curly.

Comic Relief!

Oh please! Please can this group be booked as guest performers on next season's So You Think You Can Dance?! And please, please, please will they do a version of Beyonce's "Put a Ring On It"?!?!

Waiting: Day 74

When I was first told that I needed a heart transplant, I really struggled with the idea that for me to live, someone else would need to die. I think it's a common worry for transplant recipients. Most heart transplants come from younger donors who have been involved in an unexpected accident. The body is young and strong, but the neurological damage cannot be repaired.

I have spent a lot of my thoughts with my future donor. I have offered many prayers in their behalf. Somewhere out there, in a 1,000 mile radius around Salt Lake City, some generous person is living the last days of their life. That person has no idea that time is short. My hope is that they have plenty of opportunity to say "I love you", I pray that there is little unfinished business, I need their loved ones to feel peace.

I feel a responsibility to live a life worthy of such a generous gift and I intend to bring honor to my donor and everyone they have loved.

Waiting: Day 55

I am so relieved that the pager has not beeped yet. I'm still not ready. I finally put some real consideration and effort into packing my bag for the hospital, but as of today, I will be uninsured September 1 and I need more time to come up with a solution.

I have followed every bit of counsel I have been given regarding application to additional programs, but a dying girl with mountains of integrity still struggles to get approval for government assistance. I have an attorney who is confident in my case, but I have been told that best case scenario will be a 4 month wait for answers...and 4 months are way past September 1.

The past week has been a chance for me to resurrect the tough professional and play advocate for myself, but it's exhausting! Between naps, I'm adopting an "abundance" perspective and looking forward to pieces falling in place over the next few weeks. Things will totally fall into place...right?

Waiting: Day 39

I will come right out and admit it, I have been intentionally avoiding the blog. I felt crazy pressure to be accountable to the expectations of others (expectations both real, and imagined) and I wasn't feeling up to the task. The first 30 days were tough. I felt hopeless and helpless. Most of my thoughts and words were downers. I didn't know how I was feeling and the thought of answering that question for someone else seemed an impossible task. But time brings clarity, and for me it brought hope as well. So, with some gentle nudging (mom), I'm going to give this blogging thing another go. I have a lot to cover....some serious, some silly, some A-MA-ZING. But today I'll just toss out a brief update.

?How am I feeling physically?

Oddly, a tough question to answer. I guess I feel like someone who needs a new heart. I'm tired and nauseous and dizzy and can't breathe...and that's a good day. I am operating from that new normal and so when someone asks how I'm feeling, and I say "Good" or "Great" or "Fine", well, that is what I mean.

If I've gained 5+ lbs in 24 hours from water retention, if the pain in my chest is distracting or limiting, if my resting heart rate is 120+/bpm, well those are my bad days.

?How am I feeling emotionally?

Much better! Initially I was so overcome with fear that I had a hard time identifying the hope and blessing of my circumstances. Time and research and some key conversations have helped me carve out a much more hopeful perspective and I might almost be ready to do this thing.

?When can I expect a transplant?

My doctors are fantastic about providing me information and answering every question except this one. The shortest wait has been 8 days and the longest has been 5 years. There is some urgency in my case for things to happen in year one, so that is the timeline I am hoping for. (But if I'm being honest, I'd like to be transplanted, recovered, and back to work by the end of the year. Overachiever you know.)

?How do I pass my time?

I've learned that when you're really sick, time passes just fine without too much effort. I sleep a lot, maybe enough to rival my newest nephew. I read a lot. I have watched a lot of Netflix (recommendations welcome!). I completed a University Independent Study course, and got an A! I visit friends and family when I can. I have clinic appointments every 7-10 days. I drive to the pharmacy once a week. I have been down over a year now, and I honestly can not remember being bored for one moment. I guess I have been lucky.

I also want to mention that I feel loved and supported by so many. I appreciate the cards and notes and prayers in my behalf. Thank you to those who ask my family about me, it is appreciated by all of us.

Waiting: Day 12

I was in a parking lot this evening chatting with a friend when I heard something that made me want to throw up and sit down on the pavement and cry...it was only the sound of someone remotely unlocking their car, but I swear it sounded like a pager going off. The looks on my face and my friend's were a strange combination of horror and surprise. Surprise for her, and horror for me.

I was listed for heart transplant 12 days ago and I have spent as much time as possible during those 12 days in active denial. It hasn't been an easy task, since so many have wanted to offer congratulations and support and when I've been unable to escape all of the optimism, I've done my best to play along and celebrate with them (sort of).

I don't want to have a heart transplant.

Like, really, really, really don't want to have a heart transplant.

Part of being listed for transplant is sitting with a counselor to discuss and initial each of an 8 page document outlining all of the risks and side effects that come with the procedure, recovery, and medications. It's very detailed and leaves no questioning that even the best case will come with some life long challenges. I don't want to be that tough...and so I deny. But tonight's small test run has caused me to glance at my reality knowing that I'm going to have to make eye contact, then face it, sometime soon.

I haven't packed my overnight bag yet (a conscious act of defiance), but I'm sure going to be bummed if that pager goes off and I have to check in to the hospital without a tin of Victoria Secret lip balm, my own toothbrush, and my favorite yoga pants. So I'll make myself a promise to do something transplant-y before the end of the week...maybe purchase an extra deodorant for that overnight bag?

Big Day

This is my awesome 1980's style pager. I feel some pressure to be articulate or profound...but I have no idea how I feel about this. I don't know how I'm supposed to feel about this. I don't know if I'm ready to have a heart transplant, you know emotionally speaking, because the doctors are obviously convinced that physically it's time for me to be ready. Is a person ever really ready for something like this?

The people who love me are super enthusiastic about the news...but the people who love me best, know that this is pretty weird for me. The page could come as soon as tomorrow or as far away as four years. I just hope when it does come, I've reached some clarity to build confidence upon.

check...check...check...check...

The clinic calls it the "Blue Checklist" and it has kept me very busy this week.

I was admitted to Coronary ICU on Tuesday, which was a bummer, but check out the view from my bed:

After close observation, and an insane amount of lab work, and a brutal test of my patience, we finally answered the question that has been hanging over me since the end of February, "Were my lungs healthy enough to qualify me for a heart transplant?" And the answer is yes!

The previous 90 days had moved at such a slow pace, but things went into warp speed Wednesday morning when a large team from the transplant clinic entered my room to meet me and get my paperwork started. I was discharged from the hospital Wednesday evening and sent home to get some rest and prep for the remainder of the week.

The Blue Checklist is how they keep all of the lab work and evaluations and exams organized and keep me on schedule in the right place at the right time. By the time every item is checked off, I will have a completely clean bill of health (except for the garbage heart). The team at the IMC Heart Transplant clinic have done everything possible to get my case ready for presentation to the transplant committee this coming Tuesday. Wild, right?

Clearly, what I think I know about waiting is about to be challenged, so hopefully I have learned a few things as I have moved to this point. Thank you to so many who have offered encouragement and faith and support to me, and to my family these past few months.

Quick Status Update 5/24/12 (posted to FB)

I keep waiting for the happy ending so that I can write an entertaining note about how crazy the ride has been but how great it ended...we're not there yet.

I did have my second Cardiac Ablation on April 27, 2012 and I've managed to stay in normal rhythm more than I have been out of it. That allowed me to have the big procedures this morning which were originally scheduled for March. The intent of these tests were to determine if I qualified for transplant.

My parents came to town and we hit the hospital early this morning. I'll be honest, it was a rough day and required more bravery than I thought I had in me. In addition to the complications and chaos of the procedures, it turns out that although the tests were informative, they were inconclusive due to severe water retention common with Heart Failure patients. So...the short-term plan is to aggressively address the water retention over the weekend and return to the hospital Tuesday. At that point we will re-run the procedure and possibly admit me for a couple of days for additional testing and observation.

Although I don't have any definitive information, I do have a 7 day plan...and that's the best news I've had since February!

Nalene Low

My sweet friend Nalene passed away unexpectedly on Friday, May 4th. I have struggled every minute since to make sense of my thoughts and feelings. I dedicated most of today to getting what I could in a letter to give to her family. I want to post it here as a reminder to myself of the pledge I have made to honor Nalene.

Nalene Low is like a mirror. And when you look into it, you see your most favorite qualities about yourself reflected back. It requires an exceptionally talented, and sincerely warm person, to hold the capacity to connect with so many, so quickly, and so permanently.

When I first became friends with Nalene, we connected immediately. She was everything I liked about myself and I immediately identified her as “my kind of girl”. Over the past few days, I’ve listened to many share stories which echo that same sentiment. It is clear that my bond with Nalene is not unique...it is the bond that Nalene has with all of those whom she loves.

Like I mentioned, I felt like I had so much in common with Nalene when I first met her. However, during this past year, as I have battled terminal illness, I have allowed some of those qualities to fade. Uncomfortable with my circumstances and my emotions, I have become more closed off than I ever have before. But with impeccable timing, Nalene was consistently supportive and unquestionably cheering.

I was incredibly fortunate to have some time to visit in my home with Nalene the night of May 3rd. I had only been home from my last hospital stay for a few days when she sent a text asking if I was up for visitors. In the “midst of ick” (Nalene’s words), I had ignored texts and emails and phone calls from others asking the same, but that afternoon I saw her text and responded. Somehow I knew I wouldn't want to pass up this opportunity to talk and visit with Nalene.

Nalene and Jana Evans stayed for a couple of hours and we chatted and laughed like friends do. There was nothing so profound in our conversation, but a profound mark was left on me. As I had the blessing that evening, to look into Nalene’s Mirror, I was reminded, and lovingly encouraged, to be “my kind of girl” again.

I have found it difficult to articulate my thoughts and feelings from the past few days.

A verse from the New Testament has stayed with me, Matthew 25:40, “And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” I am humbled that as she lived her life in testimony of the Savior, she thought to share that testimony with me. I am honored to step up to the challenge to live as Nalene lived, and feel lucky to have the imprint of her example so firmly stamped on my heart.

With Love,
Kimberley Denney

It's Complicated

Last Monday I thought I was so clever to write a note and refer to an old adage...now I just think it was kinda lame. Specifically because it turns out that neither taxes, nor death, seem to be my biggest concern.

The short of it is that I'm back in A-Fib and scheduled for my second Cardiac Ablation this Friday the 27th. Because of this, I had to postpone tests with the transplant team until late May.

The long of it is as follows:

Following my visit to the hospital on Monday, the 16th (the last time I posted a note update), I came home and struggled to regain any energy. While my rhythm had returned to normal, the symptoms continued to bother me. Sure enough, on Friday evening, my heart flipped back into A-Fib. I called the hospital and was counseled to wait through the night and if there was no change, to take myself to the hospital the next morning. I woke up early and traveled an hour south to the Provo ER hoping that might increase my chances of seeing my actual doc, even on a Saturday.

The ER staff was clearly freaked out by my case, but treated me well, as they replenished my potassium and prepped me for another Cardioversion. Dr. Hwang happened to be in the middle of a procedure in that hospital and, after being notified that I was there, asked that I just be kept for observation so that he could determine then administer treatment.

Dr. Hwang soon arrived, and the Cardioversion was successful after one attempt! My breathing was immediately improved, but my vitals were not rebounding as quickly as they would have liked and I was admitted for bed-rest and overnight observation.

My "frequent flyer" miles on the Cardiology floor won me a corner suite and I really do get the royalty treatment from the staff! (Although, I'd rather be nobody at home, than royalty in the hospital.) After an uneventful night, and 24 hours in a hospital bed, I was thrilled to be discharged and back in my own bed by 10:00 a.m. Sunday morning.

All of that relief disappeared in an instant when at 6:30 p.m., Sunday evening, just 34 hours after the last Cardioversion, I WAS BACK IN A-FIB!!!!!!!!!!

Since Sunday evening I've had changes to my medications, and a cardiac MRI, and Dr. Hwang has scheduled my second Cardiac Ablation for this Friday evening. I remember that I didn't love recovery from the procedure back in September, but the specifics are hazy against today's discomfort. It's funny what we're sometimes willing to "forget" for a little relief.

Through all of this chaos, my greatest disappointment is that the Heart Failure clinic has determined that the testing and transplant list placement must be put on hold...again. And I'm suspicious that this won't be the last time that I have to adjust my expectations and timelines. In my clinic visit today I was told no less than a dozen times that my case is really complicated...like really, really complicated. I don't have a medical degree, but I think that translates to "nobody is sure what is going on".

The only thing that I am sure of is that for nearly every person who has a transplanted heart, there is a story of delay and discouragement before the happy ending. I guess I am in that part of my story.

Death and Taxes

Oh...the irony!

Yesterday, with today's deadline looming, I finally got around to completing my 2011 taxes. How fitting then, that I also spent a portion of the day at the hospital casually flirting with death.

Late Sunday night, my heart slammed out of rhythm...again. It was a restless night spent convincing myself that it was probably just a minor set-back, maybe something that could be treated with medication?

Given recent conversations about a possible transplant, I'd begun to think of the Heart Failure Clinic as my one-stop shop to all things Cardiovascular...I was wrong. When I called them first thing Monday morning, I was surprised to be quickly dismissed to Dr. Chun Hwang.

Disappointed, but driven, I called Dr. Hwang's office determined to do anything necessary to end the feeling of an elephant resting on my chest. Dr. Hwang was in surgery all day...so was Dr. David Cragun...but the clinic down south agreed to squeeze me in with Cragun's PA in the afternoon, and I began internal chants of the "you can do this!" sort.

When I arrived, an awkward nursing student performed an awkward EKG, and after a couple of attempts, they had the information they needed...I was back in Atrial Fibrillation. I was certain that they were wrong. I had my Ablation September 15th and everything I understood about the results told me that if I went 6 months without another event I was in the clear and Sunday marked 7 months exactly so I COULDN'T POSSIBLY BE IN A-FIB AGAIN?!?!

The PA and I discussed possible medication adjustments that might improve things over a week's time, but I wasn't feeling that patient and I pushed for another Cardioversion. Truth is, I think the procedure is kind of creepy. But it worked 3 months ago and I craved the immediate relief it could bring. The PA obliged, contacted Dr. Cragun, and got me into the admit queue at the hospital.

I should probably speak with a professional about the cavalier attitude I've developed about being admitted to the hospital. It really shouldn't feel as common as running to the store for a gallon of milk. But there I was assisting the little admission lady and helping her realize to which tower and floor I was to report. And a few minutes later I was informing the nurses that I had something in the crock-pot and somewhere I wanted to be at 7:00 p.m,. and that we needed to make this quick.

The staff was most accommodating! I was hooked up and ready to go within minutes and Dr. Cragun appeared before I had a chance to send an update text to family. I don't think I'll ever get over how quickly they knock me out and run the procedure, but I will always be grateful for how quickly I feel the relief.

I was even the lucky recipient of a drop-in from Dr. Hwang who had recognized my name on the patient list. He was very kind and seemed as disappointed as I was that the Ablation back in September wasn't sufficient. He and I will follow-up in a couple of weeks to discuss another procedure if I don't qualify for transplant next week.

All totaled, I was only in the hospital for 2 hours so maybe it was a little dramatic for me to say I flirted with death yesterday...I did have an army of doctors, and I did receive the very best care, and I woke up this morning with a constant resting heart rate of 62 (down from 130).

2012 taxes are due an entire year from now...I think I can cheat any run-ins with fatality for at least as long.

Big Dollar Dreams

The Mega Millions Lottery has been the topic of a lot of conversation this week. Fortunately for me, Utah doesn't participate and I didn't have to battle my own logic to decide if I was going to buy tickets...but it doesn't mean that I didn't spend a little of my time imagining what I might do with $462M.

Truth is, I don't know if I'm capable of spending that much money...so I'm sure that there would be a lot of things to consider regarding the bigger picture, but these are the things I would do immediately:

- I would pay off any debt that my parents or siblings might have (car or house payments, etc.)

- I would set up $1M trust funds for each niece and nephew

- I would plan an amazing series of deluxe family vacations (The World cruise, Disneyworld, Lake Powell with a houseboat for each family, an island or beach vacation, a ski week in Switzerland, a tour of Israel)

- I would indulge my vanity with hair extensions and spa treatments and beautiful clothes and fabulous shoes and every funky accessory I laid my eyes on

- I would attend culinary arts school

- I would buy a home perfect for entertaining and fill a room with musical instruments all for which I would immediately begin lessons

- I would buy my dad a golf course

- I would open a Nordstrom expense account for my mom

- I would do some things for some friends who never seem to catch the financial breaks they deserve

...and all of that might get me to $20M??? I guess I need to start dreaming a little bigger???

I Got Shy

My childhood memories are all spotlight moments. And all of those spotlight moments are positive. I would perform, or speak, or storytell, or volunteer...anything to delight an audience. I loved me some attention...and as a grown-up, I continue to love me some attention. But I only like the positive kind of attention. The kind of attention that comes when I've delighted an audience. So, when this blog received unexpected attention because I am sick, and my daily visitors shot up from it's previous 15/day, I got shy.

I got shy because being sick doesn't feel like positive attention. Being sick isn't how I want to be known. Being sick is boring and depressing. Being sick is what I'm consumed with...and I didn't know how to blog something honest and still consider it entertaining...so, I just kind of shut-up.

But a stranger reached out today because she read something in one of my "being sick" posts that might be helpful to her family. It's motivated me to post again. Maybe I can still write useful things as I figure out who I am now? And maybe the sick me can still entertain? And maybe the pressure to find something blog-worthy in my day can help my days from bleeding into one another? And maybe I knew this all along, but have been avoiding it?

Heaven

I'm pretty sure that heaven smells like a newborn baby fresh from a bath. In fact, I'm positive!

Colorado Blvd is my Memory Lane

Colorado Blvd is the main vein to my childhood. I pretty much operated within a mile east and west between 120th and 144th for 18 years (then another year in 94/95) (then another year 2005/06). So many of my memories really just sit here in this small little square. As I drove the distance this afternoon, I thought of my job at McDonalds for 2 weeks, the dairy cows on the corner of 128th, my job at Yogurt Delite for 2 years, filling up my car for $10 at Bradley's station, ditching school to go to Taco Bell, dragging the Blvd with friends on the weekends, friends who lived up and down that stretch of road, driving with my learner's permit, driving by myself for the first time, farm land that is now packed with homes and retail...and on...and on...and on.

My world was so big back then...those 20 square blocks were all I ever thought I'd need. I cherish the memories and I adore the friends and family who still live inside these boundaries...but I am so glad that I have been able to learn that the world is much bigger than the tiny stretch along Colorado Blvd that I know so well.

Rocky Mountain High

Growing up in Colorado I used to think it was so strange that people would come to visit and get so, so sick. I still think it's strange, but now I also feel it...and that's even stranger!


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Home Sweet Home

I have a couple of days to recover from the SLC to DEN drive before John's family arrives, and I'll need so that I can keep up with the niece and nephews!


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Guilty Pleasure

It's disgusting. I know it. I hate myself a little bit for it, but...I can't stop watching The Bachelor.

Sassy and I decided that our addiction is fueled by the self-esteem boost we get every time we watch! I mean, I'm lousy at relationships, but I've never been as hot a mess as the girls on that show. Seriously, I feel better about myself after every episode.

Dirty, filthy habit. Gross.

What I Learned in Church Today: I am Loved!

The congregations where I attended church as I was growing up, and the congregation where I attend church now, were all asked to fast and pray in my behalf today. Accepting the generosity of so many people has been more difficult than I had expected.

I have so much. I have been blessed with so many things. It seems almost greedy to ask family, friends, and even strangers to exercise their faith in my behalf for even more blessings and advantages.

I often have a difficult time accepting assistance to carry something from my car to my home, and that habit is hard to break...but I really need a miracle and I am so fortunate to have literally thousands of loved ones who are willing to do whatever they can to help me get that miracle.

In an email sent to many of my friends and family, my mom referenced scripture from the Book of Mormon, Mosiah 24:12-14:

And Alma and his people did not raise their voices to the Lord their God, but did pour out their hearts to him; and he did know the thoughts of their hearts.

And it came to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage.

And I will also ease the burdens which are put upon your shoulders that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter and that ye may know of a surety that I the Lord God do visit my people in their afflictions.

I know that hearts were poured out in prayer. I know that I have felt a surge of comfort today. I know that my parents have also felt an increased peace (and that has been my greatest prayer). This burden has felt lighter than what makes sense. I don't have the understanding or faith of a perfect disciple, but I can stand as a witness that I do have a testimony. That I have not been left alone in my afflictions, and that I have been visited by my God in the form of earthly angels and increased peace.

In so many ways, I am loved.

Beat the Ambien????

I took an Ambien without thinking it through. The effects are coming on too quick for me to blog a complete thought. ah....sweet slumber....


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A Single Trial

I've never made a secret of wanting a husband and children. Aside from a few moments of doubt, mostly in myself, I've mostly always wanted them. I've wanted them so much that I've reserved love for them in my heart and my imagination. And this past year I have been so glad that they only ever existed in my imagination.

As I have watched how hard my trials have been on those who love me, particularly my parents, I have been relieved that I am not forcing that worry and fear onto a partner, or our children. And a great deal of that relief is selfish...I know I would feel terrible to be the source of any pain for them. I know that I would spend all of my energy and emotion trying to make things better or easier for them. And right now I really need to focus on making things better for me.

And although I have that longing for a family, I have a happy and exciting single life...so I guess that makes it even easier to be relieved that I'm not dragging a family through this dark patch. But it doesn't eliminate some really lonely moments.

Those lonely moments have seemed to pop up unexpectedly. And they're terrible because there's nothing to be done about them. I have dozens of friends who would be willing to hold my hand or rub my back so that I don't have to cry alone, but that isn't the kind of comfort I'm craving. In those very worst moments I need the companionship, of a companion. Someone who has shared my laughter, and my learning, and my conversations so that when they have to share my fear and my doubt they "get" where it's coming from. So that I feel that they're concern is sincere. And hopefully, so that my shame in needing them is minimized.

Fortunately I have been able to work through those moments by having a good cry in a hot shower. But dangit if I can't make them stop from coming at all.

Another Good Thing...

The days following "the news" from the doctors, my dad and I would continually think out loud as we thought of blessings surrounding this nightmare. Sometimes we'd be sitting in silence (because the shock from the news hung around for awhile and because sometimes there just wasn't anything to say) and then someone would say, "Another good thing...".

Well one of those good things is that circumstances like these can bring about reunions with great friends. Sure, the circumstances aren't the most fun, but knowing that their support trumps relationship neglect is pretty awesome.

I have spent the past two evenings visiting with friends that I haven't seen or spoken with in far too long and I feel lucky to have those friends. I always look forward to catching up with friends, even when circumstances could be better.

Jealous?!

I know I live a very envious life!

Truth is, I'm fighting this a little bit. I don't want the placards because, I don't want to be so sick that I need them. I had a few stops today and I refused to pull one of these babies out. But I know that come church on Sunday, or Temple during the week, I'm going to be very happy to have them.

He's Baaa-aaack!

Remember this guy from July 2011...?

Well, he's back. Except this time instead of 14 days, he's sticking around for 30. And instead of needing a battery change every 3-4 days, I get to use two rechargeable batteries and swap them out every 12ish hours....so we know that something similar to this is inevitable. Stay tuned!

SYTYCD Auditions

My friends are so good to constantly ask what they can do for me while I'm working through these crazy health issues and I often answer is that I need distractions. An invitation to go and see or listen to something unique is really perfect. So, I was thrilled to be invited to the So You Think You Can Dance audition taping in Salt Lake last Saturday.

Remember Brittany Starr and her dad "Ringo"? They were there!

And what about the lovely and talented Courtney Galiano? She was there!

And, be still my soul, what about Robert Roldan? He was soooooo there!

And Nigel Lithgow, and Mary Murphy, and Adam Shankman? Yep, they were all there!!!

If I am a really good girl in this life, I know that I'll get to back in my next life as a dancer...I just know it!

I'm very excited to see how the 5 hours we watched is edited down to a single episode. A boy named Dare is the only one who I think has a shot of making it past Vegas week...and I'm not sure if it was his talent or his abs that convinced me he'd go far. I don't think I was caught on camera, but if you want to play a fun game when the season airs this summer, look for me in the crowds!

What I Learned in Church Today: Support

I am learning so much everyday...about myself, about others, about my faith. Most of the time I lack the ability to turn those those thoughts into words...I hope I will be able to overcome that obstacle with time.

Wednesday night, at the temple, my mom shared a scripture with me that had been on her mind:

Doctrine and Covenants 84:88 "And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."

It's lovely to imagine myself surrounded by heavenly angels, but this last week I have felt support by many angels on earth. Those feelings were emphasized at church today. This afternoon my bishop asked our congregation to dedicate their fast this Sunday to me and my circumstances. It feels strange to be the subject of prayer and fasting for so many, but I feel so much encouragement from their enthusiasm to be part of it.

I am fiercely independent and like to think of myself as a fighter, but I'm learning a lot about not fighting alone. And I am incredibly blessed to have an army to fight with.

Change of Heart

(Posted to Facebook Notes 2.25.12)

As my parents drove me to the hospital Tuesday, February 21, my greatest fear was being told that I would need a heart transplant. After hours of testing and waiting, everything changed when I was told that I needed a new heart, but was too sick to receive one.

My mind is a great big fog. And that feels like a gift. I keep thinking that "when my head clears, I'll sit down and send an email or post a blog or make phone calls", but I'm not sure my head will clear anytime soon. Many of you have given me your love and support and although somewhat impersonal, this seems the best way to update.

I had been told last Thursday that my tests indicated that I might need a heart transplant. Although I have seen a cardiologist since my early teens, I never thought that a transplant would be in my future. I was shocked and afraid, but suspected that this could be a false diagnosis like so many I have received over the past year. A Right Heart Cath was scheduled for this past Tuesday to confirm the situation, and I began praying that they would find a functional heart.

I received great counsel Sunday afternoon and although the words spoken were not what I had hoped to hear, I left the meeting with a sense of peace. While speaking with my parents late Sunday night, they decided to drive from Denver on Monday to be with me on Tuesday. I am grateful for many reasons that they were with me that day.

I was conscious for the procedure, and could sense that there was some uncertainty regarding the results they were seeing. I kept reflecting back on the words from Sunday's counsel, suggesting that no mysteries would be left undiscovered, and I offered up a prayer that the technicians would have sufficient discernment to move through the procedure. Although a bit chaotic, we were able to complete a thorough test. The technicians and nurses were all very vague regarding the results, so my parents and I used it as an opportunity to stay optimistic and hope for good news. Consequently, we were floored when they informed me that I did need a heart transplant, but that I was currently too sick to receive one. In just a few hours, our prayers had changed from wanting to avoid a transplant to now hoping that I would soon be well enough to qualify for one.

I was born with a birth defect only recently understood as Non-Compaction of the left and right ventricles. Over the course of my life, my heart has become so diseased that it has caused high pressures in my lungs (Secondary Pulmonary Hypertension). If I were to receive a new heart in my current condition, my lungs would quickly blow out the new organ, so I cannot be listed until those pressures are controlled. I am receiving pulmonary drug therapy at home for the next month, and the doctors seem hopeful that if it can be reversed, we will know soon.

As I first mentioned, I am definitely in shock, but feel that the shock is a blessing in itself. I also feel a great deal of peace as I reflect on words spoken to me, and impressions I have felt, these past few days. There is little to be done now beyond waiting and praying, and I feel blessed to have the support of so many friends, family, and even strangers. I will do my best to maintain updates and welcome calls and emails from all of you.

Online Gem

If you haven't been entertained by Kid History yet, check it out here:

Kid History, BoredShortsTV

Mr. Clooney

I haven't been getting enough attention from my real life crushes lately...consequently I've found myself going through a George Clooney phase.

Isn't he lovely?

So...About That "Joy" Stuff...

Remember just 24 hours ago when I was all full of hope and optimism? Turns out that's harder to maintain than I had anticipated. Those really joyful people must put in a lot of hours of practice. Looks like it's going to be more difficult than I'd wanted.

I guess I'll start again tomorrow.

What I Learned in Church Today: The Pursuit of Joy

In the past few months I have been compelled to seriously consider my mortality. I have spent many days searching for the right understanding or motivation to want to fight a difficult battle. I read the stories of so many survivors who faced unimaginable challenges and found a way to do the impossible. In each situation the hero would confess that thoughts and desires of being with their spouse and/or children was the ONLY thing that got them through.

As an eternal bachelorette, and a non-breeder, those stories weren't entirely helpful. In fact, I might have even found them discouraging at times. I really wanted someone with my social circumstances to have fought the fight and be able to share something that would motivate me.

Today I listened to a speaker whose words have helped me to begin looking at my situation differently. The speaker started by sharing 2 Nephi 2:25,

"Adam fell that men might be; and men are, that they might have joy."

And then the speaker put emphasis on a word in that verse that I have always skimmed over..."might". I am here, and sacrifices have been made, so that I "might" feel joy. It is the freedom to pursue happiness that is a basic human right, but having joy isn't a guarantee...I am only promised that it "might" happen. I don't think this means that it is a crapshoot, who does or does not get to have joy, I think it implies that there is work to be done if I want to experience the joy. And I'm beginning to understand that the joy might be delayed if it's in my best interest.

And that is the place where I have found myself paralyzed. I've wanted to be happy. I've recognized my responsibility to make that happen, but I was still disappointed that joy wasn't just happening to me. I had felt that I should have qualified for immediate and immeasurable piles of joy. I had lost focus and understanding.

The speaker then went on to share some of the things he had learned from a co-worker who had become a quadraplegic, but still managed to live his life with an abundance of joy:

- Focus on what I can do and minimize what I cannot do

- Focus on what the Lord has blessed me with, and not what He has not given me or on what has been taken away

- Focus on what the future has in store for me, not on what it does not

- Don't waste time or effort worrying about things I cannot control

- Live up to the fullest extent of my gifts and talents. Improve upon and add to those talents

- Don't look back

The reality is that I've been so devastated about the loss of my imaginary future that I have failed to see the hope and goodness that still remained in my life. I get it tonight in the quiet of my room, but I will forget, and this will remain a process for me. Especially since I know that I will continue to be influenced by what the doctors have to say about my prognosis. But at least for now, I have some guidance for identifying my purpose and my reason to fight...regardless of the specifics of my challenges.

Sheremy

Sherrie Burt + Jeremy Willey

January 28, 2012

CONGRATS!!!!

A Favorite Thing

If I were Oprah, and you were all sitting in my studio right now, you would all be going home with a bottle of OPI's "Leotard Optional" nail polish! You get a bottle! You get a bottle!! You get a bottle!!!

I know bright flashy colors are all the rage these days, but after decades of sporting the discreet fingernails of a violinist, I just can't get myself to go anything but subtle.

The Price IS Right

I am 100% influenced by the price tag on an item. 100%.

When shopping, it is not unusual that I will find the most perfect item and then be immediately deterred by the cost of said item. The impact is so great that I will instantly begin to find actual, or imagined, flaws. I can walk away from anything if the price is not right.

However, there are few things I find more satisfying than stumbling into an amazing bargain. Occasionally I find something I really like and then I will check the price to find that it started off economically priced or, even better, marked down. In those moments, true love is found. It doesn't really matter what type of item or how badly I do, or do not, need it.

Today I found love on the $2 table at Barnes & Noble. 2$!

Extermination

I've heard that for every mouse you see in a house, there are 10 you don't see. I've heard something similar about cockroaches. And tonight I'm wondering...do they have a saying like that for gray hair?

I know! I know! It's unbelievable that at age 37 I am still (relatively) gray hair free...but the anticipation of it coming to an end is really freaking me out. A couple of things have me on the edge.

1.) Most of my friends my age (men and women) are gray or graying.

2.) Every trip to the hospital has gifted me 2 gray hairs, in the same 2 spots, a few weeks later.

3.) Tonight I found a third gray hair in a brand new spot!

I dug around for awhile looking to see if I'm missing any, but so much of my hair is un-see-able by me and I'm really stressing out over it!

Uh-oh ... 4.) Doesn't stressing out cause gray hair?!?

NIGHTMARE!

Last night I dreamt that I was being forced to go back to High School...it was awful!

- I was late

- I struggled to find the main office

- My first class was P.E.

- I didn't have a locker and had to carry my violin with me everywhere

- I was still driving the Buick Riviera, complete with all of the family "upgrades"

- I was having bad hair

- I hated what I was wearing

- There were "mean girls" in the halls

- Mr. Snell still wouldn't audition me for the show choir

- The cafeteria smelled like...well, it smelled like the cafeteria

But the worst part was being 37 through it all. I felt like such a loser. And that loser feeling has stayed with me all day. So I'm hoping for a great replacement dream tonight. Something that makes me feel like a winner...and stays with me all day!

Happy Chinese New Year

Wikipedia says that the year of the dragon is considered the luckiest year in the Chinese zodiac. I'm all for it! I'm open to all of the luck the universe sends my way and I'm going to use my imagination to create a little luck of my own this year!

What I Learned in Church Today: ... uh ...

I failed at church today. My mind thinks I feel better, but my body does not agree. I think I did too much this weekend. So, when it came to church, I slept through most of it. I'll be better next week.

A True Friend

A true friend will compliment you by accident. It won't be intentional, but the sincerity of it's matter-of-fact delivery will be overwhelming. And then, when you mention that it's the nicest thing she could say, she'll seem surprised at your reaction.

Yes, a true friend gives the very best compliments!

Emotion

I have always thought of myself as living without passion. Just staying somewhere in the middle ground between the highs and lows of emotion. Sure, I'm theatrical. I tend to "perform" my stories a bit. I wouldn't be surprised if others thought of me as operating with a wider range of feelings. But in those quiet moments when I am all alone, I've always done what I could to reign myself into the center of things.

In the search for an explanation for the roller coaster of this week, I can only come up with two explanations:

1.) I have had a really warped opinion of myself and I have always been dripping with passion. Perhaps my melodramatics are more than just evidence of a talented actress.?

Or...

2.) Age and experience is breaking me down. I have either lost control, or lost the desire to control, my reactions, thoughts, feelings.

One might suggest that my grandmother's DNA has surfaced and I'm chemically imbalanced...but I'm certain that the evidence from this week's events earn me some justification.

Do You Think I'm Pretty?

One of the funniest things I have picked up from my friend Sherrie is a good-natured complisult (an insult hidden in a compliment). When a girlfriend says something really, really stupid, she often replies with a sugary sweet "You're so pretty!!!", Obviously highlighting that the friend isn't showcasing her brilliance and brains.

And that sums up the entirety of what I think about pretty. I think it's a really funny jab to direct on someone I love dearly.

Earlier this week I came across a month-ish old article that has made me think about pretty:

The Death Of Pretty

I think I'm guilty. I don't think that when I am in the process of a Personal Flaw Inventory, I'm measuring myself against the pretty checklist...I'm pretty sure I'm measuring myself against the hot checklist...and I lose every time!

When did that happen to me? When did I decide that was the measurement I should be using? More importantly, WHY did I decide that was the measurement I should be using? With all of this second chance and new life perspective happening for me, I see this as a great opportunity to correct my expectations. Especially since I clean up fairly well and have a great shot at getting to pretty!

Tears of Joy...Again!

As a continuation of the "Overwhelming Happiness" theme that I have going on, I attended the Brian Regan show tonight at Abravanel Hall (thanks to The Husband). I laughed to tears more than a few times and I expect to suffer from sore cheeks all day tomorrow.

I love my new life!

Tears of Joy

I got the best news this morning. Turns out, things are not at all what I had been told and my future is chock full of hope and optimism!

I haven't been shared many details here, but in November 2011, I was diagnosed with a chronic, terminal condition. Preliminary prognosis was bad, bad, bad. I had seen a specialist who determined my case to be too complicated and last week saw a second specialist who ran me through some additional testing. This morning I was scheduled to discuss the results of the tests and identify treatments and life expectancy. I was shocked to learn that the testing and research uncovered information that completely pulls me out of the chronic and terminal categories. My condition is treatable! I can feel better again!

My brother offered congratulations on a second life and I really do feel like I've been given a fresh start. I've been crying on and off all day with the good news. My eyes are burning and heavy. I am exhausted. My thoughts and feelings are scrambled eggs. But I'll sleep well tonight with a smile on my face that I thought I had lost forever!

L.A.

Shout out to my L.A. friends for good times and many laughs this weekend. You make my life even cooler than it was before.

What I Learned in Church Today: The Love of God

The Sunday School lesson was about "Lehi's Dream" found in 1 Nephi chapters 8, 9, 10, 11, 15. In chapter 11, the 'love of God' is referenced 4 times. As I read, I asked myself if I understood what the love of God is? How is it manifest? Can I identify evidence of it in my life? With some thought, I was confident, that I don't have any good answers to those questions and that I have a lot of studying to do.

So I guess I didn't really learn enough about the love of God to share my thoughts...I just identified a topic that I would like to study further. There seems to be a lot of literature available for the study, but I'd love for you to share scripture or links to literature on the topic in the comments section!