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January 2008

January 31, 2008

Giving Life

The Oprah show had a feature on Organ Donation today. It was an amazing thing to watch-

Please follow the links below to read the inspiring story of 21 year old Jason Ray.

Son. Hero. Giver of Life.

Click here to find out the laws regarding donation in the state you live in. You can also print out the needed forms for noting yourself as an organ donor upon your passing.

Most importantly, remember this.

If you do decide to become a n organ donor, please talk to your family about your decision up front. Explain why you think it's important to you. Don't wait. In some states, even with your signed consent, the family can still say "no". It will already be an emotional time, and they shouldn't have to wonder if you made the right choice.

Be your own advocate.

And thank you. Thank you from the over 100,000 people, like me - mothers fathers, sisters, brothers, sons, daughters, aunts, uncles, friends.. -  who are waiting for a chance to live.

January 30, 2008

It's A Beautiful Day in the Neighborhood

It's been a few good days around here.

And not just because of this, or this. Or even the sweetness of this.

I've felt ... well, great!

It's been a long time, baby.

September, I believe.

Maybe before.

I think alot of things are playing into it.

We've changed my prescription, again, for dialysis and I'm sleeping abit better. Well, I'm sleeping, Period. That in itself it a miracle.

I've also done alot of personal reflection ad realized I'd given up on alot of things. Simple things. Things that made me happy, fulfilled, human.

Like, I hadn't taken the time to get my hair cut since July or even color it. I was so tired and exhausted that I just didn't think about it. Or care that I wasn't thinking about it.

I'd fallen into a "uniform" rut of sweats or jammies. Since I've been on and off quarantine, and unable to drive much I'm home bound. So, I figured why not live in jammies. It was comfy :)

Basically, I'd gotten l.a.z.y.

It was an easy transition for me. Since I was working FT in my management position from home before I was put out on disability, I was used to being comfy anyway. No need to do the hair and makeup for the kids, or the cats. As long as I fed them all, they loved me.

In a way, though, I gave up on myself.

Chronic illness will do that. It wraps around every fiber of your being, your existence and taints it all. Mostly, you don't see it coming. It just happens.

But, the last few days I've felt more energy. Don't get me wrong. By 5pm I'm toast and normally take a fast hour nap before John gets home. But, the days have been better.

Yesterday, John threw me out of the house and I got my hair cut. 6 inches worth. All the old color was cut off, and the unhealthy split ends.  The curl is back, and for the first time since I was 14 I have a head of my natural color only.

(Don't worry!That's being rectified tonight by me and Miss Clairol thankyouverymuch. Salt and pepper is for chicken. Not hair)

For my birthday, I got some gift cards and went shopping. And bought a few new clothes. Granted, they're comfy clothes I can wear around the house, and nothing that Stacy or Clinton would approve of, but they have color.  Fuschia pink, teal blue, royal purple, jade green. And the best part? I've been wearing the same schlumpy clothes for so long, I didn't realize I've gone down TWO sizes.  That was a kick itself!

Here's the new deal.

Everyday I'm going to get up, throw on some Bare Escentuals and get dressed. Even if it's my new comfy clothes. The ones with color.  That fit.

I'm going to start trying to read more, work with my daughter on her sewing, and let her try (God help her) to teach me to knit. I may break down and learn how to play Star Wars Storm Trooper Kill  The Bad Guys or whatever with my son. 

I'm 43.

I'm reclaiming my life.

I am woman, wife, mother and friend.

Here me roar.

January 29, 2008

Na na na na na na Today is my Birthday! Won't you delurk and say somethin' fun?!

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courtesy birthdaypartyjoy.com

Hide your small children ... I'm about to say something s.c.a.r.y.

Are you ready?

Forty- three.

43.

One less than 44.

Seven less than 50.

That is my fate age today.

Sigh.

I'm off to get my hair cut (I have about 12 inches to play with, not sure of what I'm doing ...) the home for some Boomama's Potato Cheese Soup and Blackberry Cobbler!

So, would you delurk and wish me well on this journey to the new 30?

And in thanks, I give you one of my all time favorite singing groups ... doing what they do best!



Make sure to watch the entire thing, it's totally and completely worth it!

January 28, 2008

Questions and Answers: Part 4

Karla asked:

When you were in Kindergarten, what did you want to be when you grew up?

Well, that was a loooooong time ago. LOL Honestly, I can't remember.

The one thing I remember most though, is when I was in high school. I wanted to compose commercial music. Like movie soundtracks and such. I was forced delightfully took piano lessons from the time I was 4 until I was 18. Music was a huge part of my life, both playing and singing.

I attended public high school my junior and senior year, and was in the Madrigal program. Our choir director was one of the most passionate teachers I ever, ever had. Robert Scott was idolized by all of us. He instilled in us a love for all things classical, and pushed our vocal training beyond what normal high school choir members ever thought of achieving.

My junior year, we put on "Joseph and His Amazing Technicolor Dreamcoat" and I was the musical director. Basically, I had a free period and was chose to be the Teacher's Assistant for his classes. That year, we spent three months doing prep work for the musical. I spent every day at the piano, transcribing each song into different keys, and writing out each vocal part for each section by hand.  I still have the original handwritten manuscript of the completed work. All several hundred pages.

It was not  just  busywork. It was a labor of love. Every single note I wrote.

After graduation I went to our local community college. I hadn't planned on that, but I found out that they had the leading commercial music program in the country! Living in Los Angeles, they had access to the best of the best in the business as teachers.

With my background, I thought I was going to be hot stuff :) I was the only one in my Music Appreciation class that played an instrument, and I had perfect pitch. I excelled beyond belief.

What I discovered I didn't have?

Talent for writing, or the dog eat dog mentality for the business.

Yeah.

So, I went to work for a friend of the family who ran a limo company as his office manager.  We had a huge list of regular celebrity clientèle, as well as several well known TV shows who's starts we drove to and from set every day. It was kindof cool for the "black sheep" of an entertainment based family.

My dad worked in television and radio his whole life. My mom had her own TV show back in Memphis for their PBS affiliate. My half sister was an actress, her husband a casting director. Even my niece has grown up to be a rock star.

Me? Nothing. So this was my brush with fame.

Things work out, though.

Two of our biggest clients were George Lucas and Steven Spielberg. We did all their transportation, personal and professional.  This was during their  Indiana Jones and Star Wars days.

One day, while at work I got a call from one our drivers who was doing an airport run. Amblin (Spielberg's production company) had called for a blind pickup- basically, go to the airport, we are sure who all is coming in. On the way there, our driver had been notified that he was picking up John Williams.

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John Williams is my hero.

John Williams is my HERO.

He was coming in to score some scenes for Indiana Jones.

John Williams.

Knowing how I felt about John Williams, the driver swung by and picked me up on the way to the airport. I was 19, and had to sear on a stack of Bibles to keep my mouth shut or we'd both be out of a job.

I did. I sat in the front seat of that car all the way from LAX to the hotel, and didn't utter a peep. But I stared in the visor mirror the whole time.

John Williams. I was this close to John Williams.

Sigh.

I need to go listen to some music now.

Please excuse me.

January 26, 2008

Questions and Answers: Part 3

Becky asked:

Given all you've gone through, what has been the greatest challenge in keeping your faith in Christ and what is the greatest lesson you've learned about God through it all.

Karla asked:

What do you most want people to understand about what you are going through?

I thought that older post about summed it up. So, thank you Becky and Karla:

.

When you first hear the words "You have ..." there is shock, disbelief, denial. You go through the motions of day to day, and- if you like me- get online and start digging up everything there is to know about "it". That thing you have. Knowledge is power. And power over "it" is all you want.You tell family, maybe a few close friends when you are ready, then denial sets in again. You can't deny that you have "it", just that it's affecting you in any way. Day to day life must go on and the world will continue to revolve.

When there are kids involved, the walls have to go up even higher to protect them. In good faith, everyone wants to hold them, hug them and tell them everything is going to be all right. I've said the words myself to others. But then they hear you talk at night, behind closed doors, about the things that you don't talk about in front of them. The .. what ifs. The .. how will yous. The .. just in cases. The ... things I want them to remember about me ... But, they trust you and what you tell them .. so words like "all right" don't get used. You are honest, but only as much as they can bear.

They watch you. How they react is based on how you react. Whether they are 2 or 12, it's the same. If you are worried, they are worried. If you are acting ok, they act ok. Which to some degree, I think, is ok and understandable. Where is becomes problematic is when everyone stops talking, and the elephant in the living room gets bigger, and bigger.

You notice small things first ... no blow ups, no tears, no "will you die?". They stop sleeping so well, eating patterns change, they spend more time with you. Their grades may shift abit. They don't want to go out, then they don't want to stay home. They become "too" helpful. At school teachers worry. Every little thing becomes "I think they are struggling with your condition". But, it's their way of coping and face it, they're teenagers -.

You want them to never leave your side. You want to treasure every look, every fight, every word that is spoken. Pictures become more important. Memories more distinct.

Sometimes, all you want to do is just talk to someone about what is going on- just to say it, hear it, know it outloud ... most times, you don't. I'm not a drama queen, by nature, nor do I find pleasure in gossip. I'm a hit-it-straight-on kind of gal. Friends are to be treasured and not used for my own gain. Words like "dialysis, transplant, no available related donors, possible rejection, death" can be pretty unnerving. Absolutely. The thought of not seeing my kids graduate, marry, and start families keeps me awake at night. Absolutely.

In a quest to provide support, some can become too overly concerned that you are living some semblance of a normal life. They tell you that you are not dealing with things, simply because you don't live in the bad-to-bad moment-by-moment reporting mode. They can struggle when you choose to celebrate the fact that you are here and living in the moment. Honestly, do any of us have any assurances of tomorrow here on earth? A life-threatening condition is simply that- threatening. Threats can be overcome and conquered.

The things you appreciate most are the little things. "I'm praying for you", "Here's a hug", "you look really good", "How can I help" ...

I cannot fathom looking someone in the eye and asking them to donate a part of their body to me. It seems selfish. The what's ifs drive me crazy- what is someone in their family needs it later. What is they get sick, have an accident, whatever, and need that kidney. What if - what if? How can I bear that kind of responsibility? And then I'm racked with the guilt of - what about my kids? Don't the deserve a mother?

In 2 Corinthians 12:8-9 Paul says "... I pleaded with the Lord to take it from me, but he said to me 'My grace is sufficient for you, for My power is made perfect in weakness'..."

Are we less faithful when we plead to God to just make it better, heal me now, take this from me, why me? I truly don't think so. God created me in His image, and the Bible tells us how He gets angry, how His heart breaks, and how He loves ... just to name a few things. Which I believe means that He understands when I worry, and when I stray from believing this will ever go away - because He knows that in my anger, self-pity and need to be 'normal' sometimes, I find that I only find peace when I get back to basics and turn it all over to Him again. And He is there, arms open on bended knee. He holds me, strokes my head, and tells me He loves me.

And that, no matter what, He is there and in control. Somewhere out there is the kidney I need, if that is the path God chooses. It's pre-ordained and done in His book. Now, it's the timing. Not my time, God's time. And as my husband says "Patience is a virtue, and I am not a virtuous woman". So, I bide my time praying for the donor, the family and the teams that will be involved in this process. That God will make something good out of this for all of them- those whose names I know, and those I don't know yet.

In closing, I want to say Thank You to all of you who have found your way to my little blog and offer up your prayers and simple words of support. I am dumb-founded at the way God has provided each of you at the just the right moment, with just the right thing I needed to hear. It's precious, and just another daily reminder that he is our Jehovah Jirah, Provider, Abba Father.

I'm truly humbled.

 

January 23, 2008

Questions and Answers : Part 2

Barb asked (and asked and asked and asked) :)....

Besides prayer, which is simply a given because I've prayed for you every single day since we met, a year and a half ago, what can we out here who love you do that would most help you and John and the kids get through this? And this is just something I want to know before I board Amtrak and surprise you. What is your favorite color? What's your favorite scent? What's your favorite way to spend an afternoon? What do you most enjoy doing with your free time? Do you like puzzles? Do you read a lot? Do you really love to cook?

What great questions, Barb. And I love you for asking :)

This was actually a tough one for me, because in sitting down to think about the answers it made me realize how much of myself I've lost through this whole dialysis, being sick thing. And that makes me sad.

Chronic illness seems to absorb everything in it's path, without you realizing it.

But, the good thing is that now I see what's happening, and I plan to do something about reclaiming my life.

So, thank you so very, very, very much I dear, sweet friend.

I love purple. Anything purple. And red. I love jewel tones, vibrancy.  I favorite ring, next to my wedding ring, is a simple filigree gold setting with three heart shaped rubies in it. once for John, and each of the kids.

My favorite scent? Fresh linen, woodsmoke and the ocean.

I used to play the piano, and I sang forever. In high school I sang in the Madrigal choir, and two State honor Choirs. I'm a second soprano. I love classical, and singing in Italian was my favorite. In college, I was chosen to sing at the Opening ceremonies of the 1984 Summer Olympics in LA, but ended up doing volunteer work with YWAM instead.  I spent sever al years in the worship team at church, and at our denominations youth camps. Those were good times :) I don't have the chance to sing much, if at all, anymore with the exception of to annoy my young'ns.

Reading used to be a huge passion of mine. I spent alot of time traveling for business, and always looked forward to the flights so I could knock out a book on each leg.  unfortunately, I don't read as much anymore becasue a side effect of the kidney failure is an inability to concentrate / focus on something for an extended period of time. My brain can't wrap around things as well to get through a book without a huge amount of frustration. But, I am beginning to enjoy books on tape and still getting my fill of books :)

Otherwise, I've always been an outgoing social butterfly. I love to laugh, play board games, talk, talk, talk, talk, talk.  I am totally into politics, thanks to my dad, but will never get into that on the blog. I save that torture for my family.

I'm the only one in the house who likes football, but I'm working on my son.

When you come (notice I didn't say if), we will find a coffee shop and just take the corner booth forever.

Sound good?

January 21, 2008

Transplant Progress Report: Living Donors

Kidney_for_kelli_blog_button1

Thank you to Karla at Looking Towards Heaven for this sweet button.

If you would like to post this button on your blog, click here for the code and Thank You.

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Thank you for coming by. If this is your first time,

and you would like to read more about our story, you can use the links below:

My Story : Part 1

My Story : Part 2

For other posts, feel free to click through the archives, located in the right sidebar.

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A few months ago, I was placed on hold with UNOS for a kidney transplant. Alot of it had to do with this hospitalization. There were some other issues that needed to be addressed as well, and things seem to be coming back together now.

After talking to my coordinator today, I anticipate being "active" on list again within the coming month. This means they will begin to contact living donor candidates one by one and begin the testing process. This is a crucial step for me since we know that I will be a hard match.

To refresh the situation, as a transplant candidate I am required to submit a PRA blood test every two weeks. It basically measures the level of antibodies / antigens in my blood at that moment in time. This will determine what organ would best "fit" me with the lowest chance of rejection.

Since my PRA levels have been so high to this point, I stand a greater chance of rejecting 90% of the organs that may become available through the general population.

So, it becomes a numbers game. The more available organs I can be exposed to for consideration, the higher the chance I have of finding one that will work. Right now, they are estimating my wait to be 6-10 years.

The best match would come from a family member. John's blood type is different, and the kids are not 18 (the minimum age required to donate). This is one drawback to being an only child.

I'm going to step completely outside my comfort zone here.

Since this started, I've been uncomfortable with asking the question of anyone, but as this disease progresses I am beginning to understand that my current treatment is not an effective long term solution. At times and in the back of my hear, I've just assumed this would all work itself through.

Would you consider being a living donor?

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Here are some FAQ's on the process:

Who can be a kidney donor?
While it is not necessary for living donors to be related to the recipient, they are usually friends or relatives. The decision to donate an organ is important and must be made by the person and his or her loved ones. You should not, under any circumstances, feel pressured to donate an organ. Our experienced transplant team stands ready to advise and assist you in this process.

General requirements of living kidney donors are:

  • age 18 to 70 years
  • good general health
  • normal kidney function and anatomy, as determined in the evaluation process

Conditions that would exclude a person as a living kidney donor:

  • diabetes
  • certain forms of cancer
  • intravenous drug use
  • certain infectious diseases, such as AIDS or hepatitis

How do you donate a kidney?
When you agree to donate a kidney, you need to be evaluated at Mayo Clinic's Dialysis and Transplant Center. You will first have a brief telephone interview. Based on this information, a kit for blood sampling may be mailed to you. You then take this kit to your local medical lab or hospital and have a blood sample drawn. Instructions for mailing the samples to Mayo Clinic are included in the kit.

 

If these results prove suitable, you will need to have a medical evaluation to make certain that the donation will not cause you harm. Much of this can be performed by your own health-care providers.

 

At a suitable time the donor must travel to Rochester to meet with a Mayo Clinic nephrologist (kidney specialist) and surgeon and complete the assessment. These Mayo physicians will discuss all aspects of the testing and donation with you.

 

If at any time a test result shows that you do not meet the criteria for donation, the evaluation is stopped. One of every five potential donors is found not to be suitable for donation.

 

What risks are associated with kidney donation?
Although some risks are associated with any major operation, donating one kidney does not pose a major risk to a healthy donor. Studies show that the remaining kidney will continue function normally and will compensate for the loss of the other kidney.

 

Kidney donation should not restrict or interfere with your lifestyle after full recovery from the surgery. There is no routine need for any special diet or medication after donation.

 

When is the transplant scheduled?
When a suitable donor is identified, the transplant is scheduled at a convenient time for both donor and recipient. Every attempt is made to identify a time convenient for both parties. This is usually four to eight weeks after the completion of the evaluation. Donor and recipient both return to Rochester a few days before the transplant.

 

How is the donation surgery performed?>
The term "nephrectomy" refers to the surgical removal of a kidney. Two types of surgery can be used to accomplish this:

 

  •   Laparoscopic Donor Nephrectomy
    This operation is performed by using a "scope" to peer into the abdomen through a small incision. This approach makes it possible to locate, secure, and remove the kidney through a surprisingly small wound. This "minimally invasive" surgery allows for a faster recovery than with the traditional operation. Donors are generally able to leave the hospital one or two days after the surgery and can often resume work within two to three weeks.
  • Traditional Donor Nephrectomy
    This operation is performed using an incision across the flank on one side of the back. The kidney is secured and removed under direct vision. Most donors need to stay in the hospital for four to five days and can usually resume work in three to six weeks, depending on the type of work they do. This method is widely used in other transplant centers, but is rarely required at Mayo Clinic.

Will I need any follow-up evaluations?
Six to nine months following your surgery you will need to have blood and urine tests and be evaluated by a nephrologist. The kidney transplant coordinator will schedule these follow-up tests, which do not require a stay in the hospital. The results will give a good indication of the function of your remaining kidney.

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I am currently working with Denver Porter Adventist Hospital, in Denver CO. Once I go active on the list again, I will also be going back to the Mayo Clinic here in Scottsdale AZ as well as looking at at least one hospital in the Los Angeles area. Our nephrologist seems to think there is one in LA that does High PRA protocol transplants, so once we have the name we will move forward as well.

The first requirement is that you have a blood type of either A or O.  If you don't know your blood type, no worries. They will test you if accepted for consideration.

*To answer the questions below, I have been told "any A or O" will be considered. Thanks for asking to clarify :)!

Please know that all costs associated with the entire transplant experience (with the exception of costs related for travel to/from the hospital for surgery) are completely covered 100% by my insurance.  We are working on ways to offer payment for travel related costs to the final approved donor. 

The process can be done anonymously (to me) if you chooses, simply by contacting Porter Transplant at 1-888-872-8891. Ask for the Living Donor coordinator and tell them you are interested in consideration for Kelli Bach. She will ask some health related questions from the list above, and if you are ok, they will mail some paperwork to fill out. A simple questionnaire.

From there, they will take all candidates and put them in order of potential match. Testing would be done locally to you and mailed back to the transplant center. No travel to the center is required (that we have been told about) until the actual surgery.

I know this is a huge request. I don't expect a huge response.

Also, another request - would you consider a link back to this post on your site? There may be someone out there beyond our scope that would be interested. Maybe not for me, but another person needing an organ transplant. We never know.

Either way, if God lays it on your heart to  participate in this in whatever way, then all glory to Him.

And to step even further out of my comfort zone, I'm going to finally post a picture. I'm totally insecure about doing this, because of the weight I've gained through the dialysis process. I will say that in the last 2 months I've lost 40 pounds, and am nowhere near where I want to stop. But, it's time to put a face to the story.

To my sweet, loving, cajoling friends who helped me see that I was needing to take this step, I love you all. I mean, seriously, I guess I was being silly. Insecure. Human.  I don't know why this is so hard, but somehow, oh well.

I hope that came out right :)

Again, I love you all. Thank you for keeping me honest and real.  Accountable.

Here goes ....

Pic

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January 20, 2008

Questions and Answers: A Love Story

Images

courtesy www.visitnaperville.com

Laurie in CA (no blog link but one of my sweetest friends) asked:

How old were you when you met John and how did you two meet? Share a few details with those of us who do not know you personally.

It made me realize that I've never shared this story with you all. I love me a good love story, evidenced by the fact that I'm closely following the sage of Ree's Black Heels to Tractor Wheels epic over at Pioneer Woman :)

I can't guarantee anything like her story, but this one's all mine! and I'm keeping it :)

I was 22 when we met. He was 27.

I had gone to Bible college, and was working full time as "Miss Big Buns" (no reference to my hips, at the time, thankyouverymuch)or the head waitress at Bob's Big Boy in my home town. For those of you not familiar with  Bob's, or Shoney's as it's called in the South, it was THE place to hang out during high school.  This is where we went after football games and dances for the best double decker burgers and shakes made.

Being "the place" to hang out, I had alot of regular customers from teenage to the elderly that came in regularly. I knew their orders by heart, and we were friends.  There was a particular group of kids that worked for a local family owned grocery chain up the road. they came is after work most nights to hang out and relax. since I worked swings (5p-2a), we;d all kindof hangout together til closing.

They had just gotten a new night manager, and came up with the brilliant idea that we should meet. So, they convinced him to come in to "celebrate" his promotion.

That man had the bluest eyes I'd ever seen.

I was toast.

He was shy, didn't talk much and could barely order a cup of coffee, he was so quiet. I flitted around the table refilling drinks and laughing with the group, but I was incredibly aware of every move i made and that fact that I was talking way. too. much.

When the night was done, they all left and I spent the next hour or two closing up. but my mind was racing with thoughts of this new guy I had just met.

Over the next couple weeks, when we needed something from the store for the restaurant, I Was the first to volunteer to run up and get it from  his store. He worked the same hours I did, and it gave me a chance to be seen.

It worked! he started coming in for coffee after his shifts and we'd hang out at the counter together until 2 when I got off.

My best friend, Suzanne, got married in May 1987 and I was her Maid of Honor.  She knew how I felt about John, so at the reception she took dead aim at me during the bouquet toss. She was determined to give me the courage to ask him out on an official date.

So, after the reception, dressed in my wedding garb and bouquet in hand I drove off to his work and asked him out.  I had never done that before in my life, and was petrified.  he was sweet enough to say yes, and we had our first official date that night at his favorite all night truck stop cafe. We shared a chicken quesadilla, and got stared out by the trucking community in the dim lights. We talked to 5 in the morning about everything.

Over the next two and a half years we dated, we spent most of that time in the air. John was a pilot, and working on getting his various ratings. Our first trip was a short one, but started with me in full migraine mode. I decided to take some Tylenol before we left to help take off the edge, and ended up falling asleep the moment we were in the air. I slept the entire trip there, woke up when we landed then promptly fell asleep on the return flight as soon as we took off again.

Great first impression, don't you think?

We were engaged rather quickly, about 3 months after we met. Both of us had a lot of growing up to do, and our engagement was not without it's struggles. We set and moved the date twice, but determined to move forward. The biggest issue came two days before the wedding when John called everything off. I was standing at a payphone after picking up my "going away" dress, and in tears. 

We spent hours at the lake talking that night, trying to sort through the things that were keeping him from feeling ready.  By the end of the night, we were back on track and ready to go.

We decided to hold our rehearsal dinner at Bob's. On a Friday night. John's parents had offered to pay for the rehearsal dinner, and his mom had wanted to give her son a fitting send-off at a well known French restaurant outside of town.  Being the son of a well-respected Chief Of staff at the largest hospital in Los Angeles, John's entire upbringing had been about being in the right place, with the right people, blah blah blah. We really didn't want anything huge, or spectacular. we had a large wedding party and wanted everyone to just have fun. We had already made the decision not to have a full sit down dinner for 250 at the reception, and this just added to the pre-wedding stress.

John's mom finally gave in, and when we arrived at the diner and went back to the reserved space, we discovered she had transformed the room with linens, crystal and silver.  Each table had a beautiful flower arrangement. Everyone ordered from the standard Bob's menu, and when it was served the food arrived on china settings. It. was. awesome.

Our wedding was beautiful. We were married by a family friend who pastored a small church in the canyon. The chapel was small, and held about 250. it sat on the grounds of an old beer gardens that the church had converted to a recreation grounds. there was hundreds of ancient oak trees, all nestled in a small valley.

It was an evening wedding on February 10th, 1990. The air was crisp and clear. I was attended by 5 of my closest friends, all draped in a deep royal purple. Our chapel was decked in white tulle and tulips, shaded in blues, white, pink and purple. It was exactly what I had dreamed of.

My dress was huge, off the shoulder with a big, puffy satin skirt. My mom had detailed the lace with beading and soft purple flowers and ribbons.  I had dreamed of watching my own daughter walk down the aisle in my dress, but an unscrupulous dry cleaner lost my dress. So, I only have the pictures to remember it by.

The ceremony was simple and we took traditional vows. The only glitch came after we had knelt for a blessing from my dad. Wearing an off shoulder dress, and kneeling can be dangerous, ahem. Fortunately, I had my back to the crowd as I fell out of the top. After some quick adjustments, I was on my feet again, with everything tucked back in where it belonged.

Our reception was held at the country club on the other side of town.

We arrived after all the guests, and were greeted at the door with the news that the caterers had delivered the wrong party and we had no food for the guests. They had delivered enough 25, and we had 250.  Some frineds of my moms took charge and ran across the street to the pizza place and  service deli and loaded up all the deli food and pizza they could get there hands on.  Classy, but it worked!

We had chosen to not serve alcohol at the reception, due to some family dynamics, and so about 30 minutes into the reception John's parents took all their friends and left to fo back to their house.  We made the decision to just enjoy the night.

There were good friends, dancing and we partied til the wee hours.

For our first night, we had gotten a bridal package at a hotel on the coast we had been wanting to stay at. We arrived about 4am and staggered into the lobby. Once we got our room key, we made it to the room and I spent about half an hour in the hot shower "melting" my hair. My headpiece had been large enough to require quite a bit of support and padding from my long hair. And about 5 cans of Shaper hairspray. After the shower, I threw on my sweats and crashed into bed next to John. Neither of us even touched the hot chocolate chip cookies that had been waiting for us from the hotel. That, my frineds, is tired.

It was a highly romantic first night.

My grandparents had come in for the wedding and were going to go on vacation with my folks afterwards. So, they met up with us at the hotel the next morning. We all had breakfast together, and then went out separate ways. I was so thrilled for this time, especially looking back. Things had been so crazy before the wedding and I didn't get to spend that much quality time with them. Not too long after they went home to Memphis, my grandpa went in to the hospital with congestive heart failure and passed away.

John and I spent our honeymoon in Lake Tahoe, walking through the casinos and eating out way through the buffets. We took lots of long drives through the mountains and walked along the lake. We had to cut it short when the area was hit the largest snowstorm in history! We literally grabbed our stuff and bugged out in record time, nearly getting caught in the pass. We were in his new 1990 TransAm  and it was not exactly known for it's 4x4 capabilities! We arrived home to our little house in the mountains about 3am, to find the pipes frozen and the heater out. We just cuddled in and made the best of things.

We will celebrate our 18th anniversary  in just a couple of weeks.

There have been alot of really rough times, and alot of really great times. We are different people in so many ways that we were then. Older, wiser, more determined, more committed. We've learned that love in not always the hearts and flowers, but it's the small things.

I can't think of anyone else I would want to walk through my life with.    









 




January 19, 2008

All in the deep end! It's Question and Answer Time !

There's a fun thing  going around right now, called "ask me anything you want" ... I've seen some great question/answer sessions over at Barb's, Bev's and Sarah's! It's been fun getting to read their answers each day they go through the list.

So, I'd thought, what the heck!

I'll try it. Cause other than yucky medical things, I'm in complete writer's block at the moment.

I'm open to any and all questions, but will quote Sarah for clarity :

NOW--one caveat is that you have to play nice, and not ask me anything you wouldn't want asked of yourself. After all, I'm not crazy. :)

So, as the song goes ...

Hit Me With Your Best Shot!

January 18, 2008

Not much, but something to report

Well.

It's been an interesting 24 hours.

First off, thank you all for your encouragement and prayers. What a support it's been!

John was bound and determined that I was going to dialyize last night, and that my Mr. Fix-It-Knight-in-Shining-Armour was going to come through.

And come through, he did.

To set the stage, the process of dialysis for me is such:

1. I have a catheter that comes out of my belly, near the belly button.
2. I hook up a 2.5 liter bag of fluid to the catheter, snap open the tubing and the fluid is supposed to flow freely through the force of gravity through the tubing, through the catheter in to my belly.
3. When the catheter gets plugged with this gunk (warning, not for the faint hearted)there is nothing we can do here. It has to be unplugged by the dialysis team.

Last night, in an act of desperation to avoid surgery, my beloved man of the hour took my dialysis fluid bag and put in on the floor. He then placed a huge piece of plywood on top of the bag, and made a bag sandwich. Then. for the next 2 hours he sat of the board, rocking back and forth to push out whatever was plugged up in the catheter. It took a good 45 minutes before it even started flowing at all, and we only got in about 2 liters. But, it was better than nothing.

I love that man.

When I went to drain this morning (AFTER! GETTING! NINE! HOURS! OF! SLEEP! HALLELUJAH!), it was reaaaaallllyyyy slow was draining.

At this point, I'm going to work all weekend to used Heparin-induced bags to try and break up the fibrin clots. If I can, then I may be safe from surgery and/or hemo.

I talked to the nurse this morning, and she seems pretty over me being on peritoneal dialysis. Howdver, these heels are dug in. Deep.

thankyouverymuch.

After seeing the neuro Tuesday, he ordered a huge amount of blood work to try and pinpoint a few things. So today at the lab, they drew 21 (TWENTY ONE!) vials of blood. That's been a blast today ... We do know there is neuropathy starting in both feet, which makes it incredibly difficult to walk. it's like trying to carry two 100 pound weights around on my feet, but the good news is I feel nothing in them. Unfortunately, the restless leg issue cannot be managed. The only available drug is not something the neph will sign off on. Sigh.

While registering the car today, (raining, pouring anyone? haha) I broke down and requested disabled plates. I'm 42.97 years old. It's against everything in me to do this, but it's getting to that point. So, I did it. I figure it will be there for the bad days, but not required on the good.

In other news, we got a dryer today! John is installing it as. we. speak.  Although  we're still nursing the washer along til we find a new one, at least we're able to dry things!! Considering we live in the high desert and we're predicting for snow this coming week, I'm thrilled.

So, if we could all agree in prayer on a couple things... I think it would be:

1. That this sleep thing in not a flash in the pan.
2. Whatever is causing this overabundance of protein in my system will. just. stop. it. now.
3. I settle down abit. I read this post this morning (hat tip to Boomama) and although I totally agree with it, I'm at a point right now where I'm really not feeling like an instrument of anything. I'm tired, and just want a break. A week even. Just some breathing space.

And that's the news from Casa de Living in Grace. A busy one today.

I'm off to fix dinner, and do some laundry.  Like, everything we own.

Never thought I'd be excited about that :)

Since ”For Kelli" was held on January 16, 2006 we have continually received requests on how people can assist with the ongoing medical expenses associated with treatment of Kelli's End Stage Renal Disease through dialysis and hopefully, transplant.

Your prayers mean more to us than anything else, but appreciate that some may want to assist in a more tangible way. If you would like to make a donation, simply click on the button above and you will be redirected to Paypal. A printable receipt will be made available.

We thank you for all the support you have given us as a family, in so many ways.