Living In Grace

What Do They say About A Bad Rehearsal?

That's how we're looking at 2007. A bad rehearsal. Which must mean that 2008 is going to be a great performance.

We're ending the year with a bang! Bloodwork that is the worst it's been yet, but a new game plan (again) to work on it. The insomnia still rules the roost, despite our best efforts with the Ambien CR. The med doesn't seem to metabolize in my system properly, so nights are spent in a hallucinogenic panic state, and days ... well, I'm like a zombie, devoid of thought and balance. Can you say "are we having fun yet?"

I've basically stopped driving in the last couple of weeks; I'm too nervous about how I feel to get behind the wheel. It all relates to clearances- how well my body is getting rid of the toxic buildup normally done throughout the day by the kidneys. Now that we know I've taken a significant hit on the function remaining in my one kidney, it does start to make sense.

Kidney failure is one of those things- it can happen all of a sudden, or progressively over time, or just when it feels like it.

The good news is I seem to be processing fluids on my own really well. Fluid overload is normally the first thing that happens when clearances are not good. But, I've not only kept fluid off, but lost 8 pounds as well. Over the holidays.

There was a shocker.

But, this month the BUN and Creatinine levels were sky high, and my hemocrit is down again. Hello, Anemia. So, I'm back to dosing 10,ooo units of Epo every day instead of three times a week. It seems the higher the BUN/Creatinine, the more Epo is takes to maintain things. So, hopefully, if we can adjust dialysis again things will resolve.

I've got appointments to meet with new teams next month in Nevada, about an hour north of here. We are also looking at something called Nxstage dialysis.  It's an in-home hemo solution, done 2 hours a day every day (versus 11 hours day every day like I am doing PD now).  There is a center in Las Vegas, which is about an hour away. The training is every day for 6-8 weeks, and both John and I will have to attend. Is this is the option we feel is the most beneficial medically, we will begin to look towards gathering things together to set up that trip.

Yes, it's been a frustrating month or 12. But, I'm still full of hope and commitment to my family and my life.

My husband is my rock, and is exactly what God knew I would need at this time in my life. Every day, so many times a day, I'm amazed at how he takes care of this family, of me, without complaint and with a gentle heart.

My kids are dealing, sometimes well, sometimes not. Same as anyone. But, they know they are loved. And that, above all, is what's important.

To all of you who have had struggles this year, who have hurt, doubted, questioned, wondered, cried.

Remember  these promises:

He will never leave you nor forsake you. He knew you from before you were born. He knows that path   laid for you. He died for you. He died for this. Nothing is a surprise to Him.

Take my hand. Let's walk through this next year together. I'll be there to pull when you need me to, and I'll allow you to pull me in those times I need it, too.

You are each a blessing to me. od put you here, in my life, for a reason. And I in yours.

May God bless and keep us all, safe in the grace of His love.   

Updated: Urgent Prayer Request

** ETA:

We think the in office process worked! Basically, they attached a horse syringe to the end of the catheter and pushed a huge amount of fluid and Heparin through the syringe and pushed what we hope was a protein blockage back into me and out of the tubing. (The tubing is not even as big around as a #2 pencil, so "unclogging" it is a chore.) The Heparin will hopefully start to dissolve the protein internally, and it will flush out over the next few days. If this was not a protein block and the catheter has shifted, we will know in a few days and surgery is where we will head. I'm still draining really slow, and not completely, but hopefully it's just time before it resolves.

I was able to get a nap once we got home, and will hit the Benadryl tonight. I figure being abit sleepy tomorrow will be worth it if I can crash out for a night.

In other news, I am losing more function. Things have shifted since our last adequacy a month ago, and we are making changes to my dialysis routine. We had a long talk with the team today about our concerns, and hopefully have a plan that will really work. We will still be seeking another opinion in the coming month, but I think we made some small headways today.

The great news?

It's the day after Christmas dinner, the end of a holiday eating season (hint hint) and I was down 8 pounds today from last month's weigh in!!

I'll be posting up Christmas pics and commentaries in the next couple days, including the story of the "Corpse Bride Tree".

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We are on our way to the Dialysis Center (about an hour away). My catheter has been plugged and we were not able to resolve it over the holiday.

They are going to try an in-office procedure to try and clear it. Should that not work, we will have to go to Phoenix for surgery.

I would really rather not have to go that route.

As well, the insomnia meds I started las week were way too strong.- Not only did they not help me sleep, it all basically built up in my system over the 5 days I was trying it so I was pretty out of it.

I've been off the meds since Friday, and still am only sleeping about 45 minutes to an hour at a time. I am beat. With my immune system already tanked, I really can't afford to get sick.

I'm hoping to get to some sleep on the way to the appointment today... we'll see.

Thank you so much for the prayers. I'll update (or someone will) as we know more later :)

Let's call it "Scenes from a Christmas" shall we?

Considering how early the kids talked me into dragging the Christmas boxes into the house for decorating this year, I planned on having everything all set up in time for BooMama's! Big! Christmas! Tour! Extravaganza! I was so ahead of  the game, I even thought it was on the 10th of December and not the 17th ...

Yeah, well, the best laid plans and all that.

What I am about to show you is not our "finished" look. Those pictures are stuck on the digital camera, which at the moment is in a tiff with the USB cable the two simply refuse to communicate. (Between you and me? I think the EasyShare is jealous of the mp3 player that's been hanging around with the USB cable).

Can't we all just get along?

So, I present to you "How the Bach's Started to Decorate For Christmas" ....

First, you need a helper!

See? What a good helper!

Here's the Supervising Elf and his faithful friend Wiley

Getting ready for sleigh pulling! (Ain't he cute)

Decorating can be exhausting ....

The Design Team .... They did the house thing this year, all by themselves.... and did a GREAT job.

Two things ... if you look above Kati's head and to the right abit, you'll see something that looks like a Santa head ... keep looking right and you will see the beautiful wreath ornament that Miss Shalee made me this year!

And that Santa on the top of my tree? I got that beautiful collector item for FREE! FREE! FREE! I tell you! When the kids were 1 and 2, I saw that Santa being given away at the Mall for just $350.00 in combined mall store receipts.

Did they see me coming, or what?

Anyway, he's just my favorite guy.

Thanks for coming by. We wish you and yours a very blessed Christmas!

Control and Lessons Learned

Websters defines control as " To exercise authoritative or dominating influence over; direct". Those the know me well may define me as the same.

I have an in-bred desire to control the things around -- my career, my teenagers, the weather, the way others drive around me ... the list goes on. I value knowing how things should go, to the point of finishing others sentences at times. These are things I am aware of, and work on constantly.

When life throws you a curve, like say, kidney failure and daily dialysis ... you lose "control". You are tied to a process 4 times a day for 45 min or so each, where you cannot do anything but sit and wait for it to finish - you cannot make it go faster, although I swear that focusing on it will in fact make it go slower. There are times when the dialysis fluid is draining out of that bag, that gravity itself comes to a stop and all downward motion ceases to exist within the walls of this house.

Travel becomes more difficult- and we are a traveling family. Not just because we have moved 23 times in 17 years (yes, we actually sat down and counted it a few nights ago) but we are day-trippers. We love to get in the car, kids, dogs, lunch and map -- and just go! We have seen alot of things we never would have stumbled onto on those trips -- and created more memories with the kids than we ever expected.

Let me count how many day trips we have taken since this started .. well, there was the time we ... no, that was in February ... oh yeah, we ... no -- that was in December. Hmmm - we haven't done anything day-trip-ish since this started.

Waiting for the results of a whole lot of blood drawn is not fun either --- what will be up, down, not changed, new meds. more meds, IV, oral --- change change change ....

I'm the organizer --- taskmaster ---- keeper of schedules, places to be and lateness-detererrer. The first to volunteer or go if I'm available. If there is free time to go see something new, I have the keys in my hand and a homeschool project in the offing ...

Until now.

We just moved into our new home - which sits on 20 acres on a mountain (thanks God!). However, after 23 moves, this was the first "stressful" move I've encountered. Why? Because I cannot lift, and I have no energy after about 1/2 hour. I had to "sit" while everyone else stepped up and packed, staged, moved, loaded, unloaded and organized. I had to "sit" and watch -- from the sidelines, and feel totally, completely, truly, deeply useless. I can honestly pack out a house in 48 hours - I'm that good. John is the loaded / unloader. That is our way, its the way we survive.

However, this time was different. If I could go help, then I realized I couldn't because I would have to be back too soon to do another dialysis exchange -- after lifting a small box, my anemia would kick in and remind me that I'm not supposed to do that by taking every last once of energy away from me in a heartbeat.

So, I sit alone in an empty house and get mad. Angry at the reason I'm sitting here, angry at God for not healing me in the 41 years He has had the chance to, angry that I don't feel better despite the large number of drugs I take every day, angry I can't swim this summer because of the risk of infection to the catheter, angry I can't lose weight because of the stupid sugar in the dialysis solution that seems to suck into me and double in caloric value every day, and then -- I realized something. I am useless - but,

I am loved despite everything.

I have a wonderful husband who has stood by me through:

Removal of a kidney
6+ mis-carriages
2 c-sections
Hysterectomy
Kidney Failure and Dialysis

And he loves me.

With every box he packs, lifts, loads and unloads to organize and put away -- he is showing me my value to him. That my existence here to him matters --- my uselessness is really in my head. He loves me and values me enough to step in and do it all - 18 hours a day, and not complain

My kids love me.

With every bag they bring, and exchange they demand to help with, they show that this process keeps me with them another day. They have been amazing through this whole experience and remind me that God is in control.

My God loves me.

I was not planning on going to the Dr., not this Dr. But I did, and he ran a test that showed us what was going on. He referred me to the BEST specialist, with the BEST team. I've met the rest of the practice -- I know this is a fact. Dialysis began well, no hitches, and my numbers have, for the most part, improved beyond anyone's imagining this early in the game. I have the perfect job, that allows me to work FT from home, with my husband, and pays the bills and carries the exact insurance I needed. God is in control -- not Kelli. God has provided the environment and the tools that are needed, at the right time (not my time) to make sure I am taken care of. I hold onto that fact that lives will be touched through this process; Heaven will be populated- because I sat down 4 times a day, for 45 minutes and gave up control of my life.

And, really, I think that is the key.

God only gives us what we can bear -- and right now, the amount that I have been given has truly brought me to my knees.

What I need to remember, is that is exactly where I need to be.

Urgent Prayer

Little Olivia, two months old, needs some serious prayer. All the details are here, with an update posted here.

Thank you everyone :)

Hello Lover

Hopefully, this is the start of a beautiful relationship ....

Decked by the Halls

Well.

It's been quite a weekend around here. Never a dull moment in the House de Living In Grace.

Friday, we noticed that Beau, our precious silver chinchilla persian started throwing up abit here and there. Initially, we thought it was furballs, but it went on too long for that. So, this weekend has been dedicated to keeping an eye on him, and feeding him water through an eye dropper. It's like having a newborn all over again. Without the stretch marks.

He seems to be getting better, and started to get up and walk around a little last night. He also, thankfully, started drinking water out of his little bowl by himself, too. Today we'll start re-introducing him to bits of food and see how he goes. Rather heartbreaking to watch him so limp and still this weekend. But, God willing, we're on the downside.

Sometime in the middle of the night last night, John got up to check on the cat. It's worried both of us so much and we've taking turns with him this weekend.

Anyway, he came out of our master bathroom where Beau is locked up, and somehow walked right into one of the double doors between our bedroom and the hall. We're still not sure how he did it, but it was dark and he got disorientated  about where he was.  That's our best guess.

Needless to say, I now have not only a sick cat on the mend, but a husband with a broken nose. There was much yelling, bloodflow, and gnashing of teeth. Not quite the way to wake up out of a dead sleep, but oh! the poor guy. We iced it and put him to bed with some Advil, but it was already swelling. This is the same beautiful nose that he broke back in the late 70's and was put back together with extensive plastic surgery.

Ugh.

I'm truly hoping this is not where we're headed. He hates hospitals enough when it's me that's admitted- when it's him? Well, we just won't go there.

So, if you guys could be praying for both of my guys, it would be a blessing.

And on the bright side, there's some more appropriate Decking o' the Halls going on over at Boomama's today! Unfortunately, the camera has decided that it's mad at the USB cable over something silly and won't so they refuse to communicate.

If I can get the two of them through counseling fast enough, I'll share with you our holiday fa la la la la which includes this little known fact:

The Three Wise Men?

The came to Bethlehem on a rabbit, a turtle and a blue crocodile....

Enchanted - Also known as post number 500

500 posts.

I need a nap.

Thankfully, for you, I not even thinking about doing a '500 Things You Don't Know About Me" post. I mean, truly, I love y'all too much for that.

So instead? A PSA for your holiday viewing pleasure.

We're not big 'go to the theatre and pay half our life savings for two hours entertainment' kind of people. Honestly, we are big NetFlix fans, and so every time a movie comes out we want to see I just run over there and save it to my queue. Then, once it comes out on DVD it comes to me without a second thought!

Brilliant!

And all this wonderfulness is due to the fact that sweet Mary from Owlhaven was doing a giveaway for a free Netflix trial Membership a few months ago, and I won! We have thoroughly enjoyed the heck out of it, rotating about 9 movies a month through our queue.

Whew! That's alot of movies....

That being said, there are so many wonderful looking movies out this Christmas season that we wanted to see. at Christmastime. Cause, like, they're Christmas movies. Y'know?

Unfortunately, we live in the land of small town rural nowhere USA, where there are no 10-plex theatres to choose from. We have a 4-plex. Well, we do until tomorrow night. It's closing.

Ho Ho Ho. Merry Christmas.

No movies for you.

I probably should have realized something was up when they started running new movies through in just one week. Here today, gone tomorrow ... You missed it? So sorry. Feel free to drive tow and a half hours round trip to the nearest movie theatre.

So when I read in the paper that our little $2.50/seat matinée place was closing this weekend, I dragged hauled forced begged   asked the kids if they wanted to go see Enchanted. Jonathan's response was an immediate and resounding "Why?!". Kati, well, she let her brother do the talking.

Too bad, so sad. Get in the car. We're going.

I have to tell you that this was a great movie! Totally and completely family friendly and safe for all ages. It was cheesy as the day is long, which is what makes it so enjoyable.  A perfect combination of real life and both 2D and computer animation, with musical numbers and songs galore.

Amy Adams is precious as the naive Giselle, James Marsden (of Hairspray and X-Men fame) is hysterical as the cheesy Prince, Patrick Dempsey ... well, he's Patrick Dempsey- what else is there to say, and Susan Sarandon is as evil and wicked as the day is long as the StepMother Queen out to destroy Anyone who stands in her way.

The true test? It illicited laugh after laugh from both the 13 and 15 year old, as well as everyone in the theatre. At the end, there was a standing ovation. Rather weird since the screen really couldn't take a bow, but nonetheless ...

This one is now safely tucked into our NetFlix queue for future viewing.

If you have a chance to see it in theaters during the Christmas season, run. Don't walk. 

To see if it's playing at a theatre near you, check out Fandango.

And now, just to whet your appetite ...

 

In the Still of the Night

No matter how I try, no matter what I do, I just can't shake my new love. It would appear that, despite my best efforts, Mr. Insomnia and I are meant to be together.  4evah.

It's quite a nice routine we have, he and I. I go to bed around 10, like a normal person, and spring to life again no later than 1:30am to meet with my new friend.  We surf blogs, watch TV and catch up on DVR, and read until about 6am. Then, as the sun threatens to expose us, I slink back to bed, throw on a sleep mask and resume my normal life again after sleeping for 3 or 4 hours.

I could float away on the amount of Sleepytime Tea I've tried, not to mention the Benadryl, Ambien, Rozerum and whatever else we tried. Mr. Insomnia is just too strong for me. He is like a jealous lover who just won't let go.

Unfortunately, the side effects of our relationship are becoming an issue. There's the crankiness, moodiness, zombie-like fuzziness, and the general lack of overall caring about a single. darn. thing.  Not the best time of year to be that way, y'know? Sometimes even just getting up the energy to take a shower is too much. Ewwwww.

I need a new friend. One who accepts me as I am, and doesn't try to change me into this monster.

Anyone out there got any ideas on how I can ditch this fool?

Standing With YWAM

By now, we're all too familiar with the shootings that took place in Colorado Sprint and Arvada this past weekend.  So many families have been affected by loss and disbelief.

My dear friend Sandy, who was here to visit in October, has two brothers that have been involved with Youth With A Mission for over 20 years. Now, several of their children are also involved in various YWAM ministries around the country.

Jimmy's oldest daughter was part of the base where the shootings took place. Although she was not there physically at the time of the shootings, she has been greatly traumatized by the loss of the friends and the entire event. If I remember correctly, she's 20 or 21 now.

Please be praying for all the kids, and their families, as they struggle to understand and cope with all that has happened.

May the Reason for the Season also be the Healer of their Hearts.