Living In Grace

Updated: Treatment Monopoly - Return to "GO" without the $200.00

Ugh.

Ugh. Ugh. ugh.

When I started on dialysis, in May 2006, I was under the care of the best team ever. Each aspect of my care was managed by a person assigned to a particular task. We met monthly, we talked, we discussed, changed, flowed, cared. We monitored outcomes, made changes where needed, set goals to meet. Everyone was on the same page.

It was blissful. It was alot of work. I was healthy. feeling good, living my life without too much interupption.

Then, we moved to Arizona to be closer to transplant possibilities.

Everything changed.

We have had distinct concerns throughout the last 8 months since moving here about medical care. We did have to accpet the fact that things are just done differently here, which was hard, but if the end result is the same it shouldn't have been a huge issue. Right?

Since moving here, I've been put on extreme dosages of EPO for low red cell counts, my length of dialysis has basically gone from 9 hours to 24 hours a day, I've had two life threatening infection episodes, one hospitalization, and the list goes on.

The question was asked last month to the team- Why am I even on dialysis, let alone THIS much dialysis, when on my tests show that I still have 13% function in my one kidney and better clearances through that kidney that through the dialysis process?

The answer was surprisingly- vague. the more we asked, the more vague the answers grew. Then, the defensive answers kicked in. It almost came down to "becasue I  say so".

We have a one hour drive each way for these appointments twice a month. On the way home this time, there was alot of frustration, confusion and discussion about the level of care. Again.  Between the feeling of chasing our tails to get my healthy (I've basically been sick every day since 9/11 this year), and the routine Dr. visits of 'get your weight and blood pressure, review meds, how ya feeling, goodbye', not to mention the only contact with the dietitian is a 1st grade pitorial of the right foods to eat for certain blood issues once a month in the mail ...

We've hit the end of the road.

We talked it over and decided to try something. Something rather bold, but we felt, important.

I stopped dialysis. For two weeks. Without telling anyone outside this house.

The cold, hard fact is that I should be in the hospital fighting for my life right now. I'm not.

Blood work was drawn with my regular non-dialysis Dr. yesterday and yes, things are off abit. My BUN and creatinine (the two most important indicators of kidney health and uremic poisoning) are elevated. But, they are the. same. exact. numbers. as they were when I was doing dialysis 24/7 a month ago.

In talking to the Dr. it appears that I do in fact need dialysis. Those numbers are not at healthy levels. However, it's also glaringly apparent that the type of dialysis I'm doing (amount and time-wise) is completely a shot in the dark and useless.

So, we start over. Find a new team. the hard part is there are few PD clinics in the area. We've worked with both groups in the Phoenix area, we've interviewed the guys here locally, so now we look to Nevada. We will be traveling up for a couple days, hopefully soon, to interview three doctors and the two PD clinics. Hopefully, one will be a good match. If not, I just don't know.

**ETA: We are not looking to relocate to NV. Sorry for the confusion. We are located within a reasonable driving distance to the Las Vegas/Henderson area (about 80-120 miles each way).  We have been told that the hospitals in Vegas are pretty awful, so we are looking more at Henderson. But only as a commute, not a move. Hope that helps :)

I already know that getting a transplant will be 6-10 years off, if even possible. So the goal has to be to stay as healthy until then as possible. The problem lies in the there is money to be made in the medical field. Dialysis supplies alone cost us $37,000.00 per month. I would think that for that kind of money, the care behind it would be a wee bit better than it is.

So, the plan for now.

1. Restart dialysis tonight as usual.
2. Interview some new doctors
3. Interview new clinics
4. Make some solid decision about moving to a new team
5. Stay healthy
6. Not let the frustration overwhelm
7. Figure out how to gracefully remove myself from the current group, when all I want to do is rip some heads off and stomp them into mush.

I'd ask that you be praying for us through this. Going back to MT is impossible. It has to happen here. Period.

   

Happy Holidays? I think not.

Laurel has posted something that just made me smile a whole lot today! Adnd now, I'll be singing it all season long :)

As we move into the more blessed time of the year, let's remember-

It's Called Christmas with a Capital "C" !

Michael W. Smith: It's a Wonderful Christmas - A Glorious New CD!

Last week, there was an offering of 150 copies of this wonderful new CD by Michael W. Smith for review. Luckily, I was up early, early and made te cut! Our CD was mailed on Wednesday, and we recvd it Friday.

Unfortunately, I don't have a CD player in the car, and since we pick up our mail quite a ways from the house and were on the way to town, Kati and I had to be patient until we got all our errands done (yes! I DROVE!  I DROVE!).

We finally got home and popped the CD in. Oh. My. Word. It's amazing! Now, I'e always been a huge MWS fan. I'm old enough to remember when he first came out. I can honestly say I have ever. single. CD. he's ever put out. And still listen to them! And, he's one of the few that the kids and I agree on.

So, that tells you how timeless is music is. This album has some beautiful orchestral arrangements, interwoven with beautiful but simple lyrics.

Pure Smitty.

The entire CD opens with a simple melody that sounds like something from Toyland or a magical fairy kingdom. Sweet, simple. And it bursts forth from there. He has a way of saying things in such a simple, but worshipful message ...

And Mandisa! A Christmas Day is a wonderful duet with MWS and Mandisa. It just makes me want to, well, melt. Then dance around and celebrate!

I love it.

Because of my situation, we treasure each day together. The holidays can be the hardest. especially for me, a mom, who really has to accept that each one may just be the last I have with my family. So, creating memories is hugely important to me.

Faith and music are two important ingredients in our lives. What a blessing to be able to have one more piece of beauty and hope this holiday.

So, hear some samples from the album.

Then, click here to get your own copy.

Make some memories.

All Year Long.

Interesting What You Can Stumble Across at 4am ...

Hope on the horizon?

Looks like I have some research to do.

UPDATED: "Please keep your wings and legs inside the roasting pan, 'til it comes to a full and complete stop" - Mr. Turkey

And so it begins.

The menu was planned,
the groceries were bought.
Plans were made,
a timetable sought.
The goal of the day
was to get it all done,
so tomorrow would be be
just a day of good fun.

The dishes were prepped,
and put up in foil,
just waiting for their turn
to bake, cook or boil.

The brine came together,
the bags were in place,
but no, Mr. Turkey?
too big for the space.

The roasting pan beckoned,
"Come brine here awhile,
you'll get nice and tender
and bring such a smile."

But, lo and behold,
we forgot some small things,
to measure the pan
that now won't hold the wings.

We tried it laid sideways,
we tried it laid flat,
but no, Mr. Turkey
will have none of that.

So frantically calling our
man on the cell,
we begged and we pleaded
"I know WalMart is, uh, well..."

But if you want your turkey
all brined up and ready
You have to go fight back
and grab me a ready-

made roasting pan big enough
for this huge bird,
or else we'll have hot dogs
and look like big nerds.

Well, my rhyming is failing
and I've things to do ...
So here's to just wishing
HAPPY THANKSGIVING to you.

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

UPDATED TO ADD!!!!

My hero called back,
said "I'm coming, get dressed
We'll BOTH go to WalMart
I do think that's best."

So, kicking and screaming
I threw on my clothes
but begged "First to Sonic"
to drink 'way my woes.

Then taking a deep breath,
we grabbed the last cart
and dove in the mire
and got a good start.

Straight to the roasting pans,
down center aisle,
grabbed some more stuffing
shoving through with a smile.

Cinnabon for morning
while watching parades,
clad in our jammies
screaming "Hurray!"

We busted through Self-Check,
'cause those lines- oh my word!
Some may still be waiting
til Christmas- absurb!

But all is now set right,
the turkey will fit,
no hot dogs for this group,
with turkey we'll sit.

So "Asta la Vista"
and oh "C'est La Vie!"
Again wishing hap happy,
to your family.

Spend Christmas with Michael W. Smith FREE!

Another great FREE music CD giveaway is underway! It's limited to the first 150 people, so click here ... fast ... quick like a bunny! Go NOW!

You can hear a sample of the CD while you sign up! It's amazing :)

And HAPPY THANKSGIVING to you and yours. May God continue to richly bless each of you.

Ok. Just call it what it is .. an Ode To Pioneer Woman Cooks.

Being couped up in Camp Quarantina de CoughUpALunga the last few weeks has given me many pleasurable hours of Food Network on DVR...

Although I've lost 7 pounds physically, from eating little to nothing - mentally, I've gained about 100 pounds with shows like Iron Chef, Food Network's Ultimate Thanksgiving Dinner... oh and reading this blog. I "found" Ree one day when I was begging for recipes several months ago and she hopped over and told me about this. It was love at first site. Oh, and she writes some great stories, too. She's pure cooking evil all rolled up in a sweet, endearing package. Because of her, I'm actually going to try this for Thanksgiving.

May it be noted for the record that butternut squash has never crossed the doorstep of this house before. Never.

Anyway.

With all the Thanksgiving goodness I've been absorbing, I kept hearing about "brining" a turkey. Clueless. Me. What the heck. So, I looked it up and lo and behold! The answer to my prayers! No! More! Dry! Turkey!

Hallelujah!
Can I get an AMEN!

See, I've had me some lovely turkey disasters.  There was the "dropped on the floor" turkey, the "don't think it was totally thawed before I starting cooking, we ate at 9pm" turkey, the "dry and tasteless who wants hamburgers tonight" turkey ... and the list goes on. Last year, the turkey was awesome- but, it was the "sacrifice your first born" pre-seasoned pre-bagged, freezer to over turkey. And this year, said turkey was out of our budget by a long shot.

So, now we're on the brine wagon. Seems simple enough. Here is the recipe that I'm going to try, and once completed I'll do this:

INGREDIENTS:

• 2 quarts cranberry juice
• 1 quart  water
• 1 cup salt (1 1/2 cups Kosher or coarse salt)
• 1/2 cup apple juice
• 1/2 cup orange juice
• 12 cloves garlic, unpeeled and lightly smashed
• 4 springs fresh thyme
• 4 sprigs fresh rosemary
• 6-8 bay leaves

PREPARATION:

Combine ingredients and place in a large pot. Add turkey to pot, making sure that brine covers turkey, turning every few hours to ensure the whole turkey gets marinated. If not, add more water to mixture. Brine for 1 hour per pound.

I was talking to Shalee about this today, who by the way is a virgin briner this year as well, and she had a great idea! She saw the whole brining thing discussed at, you guessed it, Pioneer Woman's Place and she uses these brining bags. Since neither of us have brining bags, she is going to use ... trash bags!

Sheer genius!

I do love me some Shalee!

So, Tom will be taking a soak in the pool for a good 24 hours before he goes to the spa. 

And when he is done, he should be have a healthy, allover glow about him that will last for ...

well, I think you know the rest.

How Do I Love Thee ... let me get the dough.

One thing I've always wanted to do was whitewater rafting. On vacations growing up, we would drive from California to Tennessee and Louisiana to see family for an extended time. Each year, my dad would drive us through a new course of towns, so we got to see so many things.The Grand Canyon. ghost towns, sugar cane fields, historic towns and monuments like New Orleans and lots of National Parks. Lots.

My absolute favorite part of the trips were when we were driving along the wild rivers. Watching the smooth currents turn into thrashing, crashing whitewater was fascinating to me. We would pull over time after time and we would throw rocks and sticks in to the river, sometimes being able to watch them float gently down until out of site, and sometimes watch them thrust to and fro by the strong currents. It was amazing.

Now, we're beginning to navigate new waters. Those called "The Teenage Years". Sometimes, the waters are still, peaceful. Sometimes still, but you can see the drawing undercurrent and know whitewater is ahead.

My teenage years were like this, as I'm sure most everyone's were. There were insecurities, wanting to fit in, be popular but not for the wrong reasons,  grow up and be taken seriously, make my own decisions.  It was never fast enough for me. I was heavily involved in my youth group, which was a blessing. And when things at home got too much, I had a refuge to run to. 

Kati and I are learning to navigate these precious, tumultuous years. She's so grown up, so determined in what she wants to do, so sure of herself in so many ways. She is daddy's girl, through and through and will confide in him easily. With me? Well, we work on it. Daily. She is just like her mom was at that age. She is so, well, me.

The past few weeks have been abit bumpy, but not destructive. We have talked and talked about her schooling issues and made the hard decision to pull her out of her current situation and move her to the same homeschool academy Jonathan is attending. I've had to go to the may with two of her teachers, her advisor and the principal of her current homeschool academy over serious issues that they don't seem to get. We have had to come clean with her and just say "We made a mistake. We love you enough to correct it now, since the school has made it clear that they are not going to help".

So, we're in the process of enrollment, transfers, records, grades blah blah blah.

John's boss called in sick today, so John is out at work for the whole day. With that, we took a break this afternoon and made some Christmas ornaments.  Simple recipe- 4c flour, 1c. salt and 2c water. Bake at 300 for 30 minutes.

But, for two hours, we just rolled, shaped, cut and decorated. Just my baby girl and I. laughed, listened to Christmas music and laughed some more.

She'll be 15 in 2 weeks. 15.
My baby.

Next summer, she'll get behind the wheel of a car.
My baby.

Next summer, she'll go somewhere far away on a mission trip to learn about other cultures.
My baby.

In three years, she'll be off to medical school to become a nurse. Then go to Mali, Africa and try to save a piece of the world. That piece that is so firmly embedded in her heart.
My baby.

But today, we sit on the life raft of her life and laugh. Roll. Cut. decorate. And I'll look at her and sees myself, just a few short years ago. And pray that I make it easier on her. That I'll think before I speak. Hug, when I want to clobber. Wait, when I want to decide. Listen, when she wants to explain.

My baby.

   

Grocery Shopping -$ xxx.xx, Mommy and Me Time - Priceless

Hello internets!

Remember me?

Take a minute ... it will come to you ...

Well, it's been a couple of weeks since I crawled away into the family cave and did some hibernating. May I be honest enough to say not a single thing has gotten done over that time? Not a one.

Besides the usual nonsense, my whateverthecoughthingisIgotinthehospital developed into a full case of bronchitis, complete with 4 courses of antibiotics, one course of steroids, three trips to the ER, twice weekly trips to the Dr., and one nebulizer. Then, the kids caught it. Then John. We're a walking, hacking marvel of wonders, we are.

Everyone has started to feel better, so today we started to dig out. Literally.

Laundry mountain was tackled. Pajamas were washed. And boy, did they need it. Vacuuming was done, trash was emptied.

We've basically been surviving on pantry food, 'cause no one was up to going to town for shopping. John has continued to work through this, but was so beat by the end of the day, I didn't have the heart to ask him to tackle grocery shopping. May I just say:

"God Bless the Inventor of Kraft Mac n Cheese".

Hallelujah!

Amen.

So, after facing the reality of an empty pantry and knowing the evil deed must done, I did what every self-respecting wife does- I wrote up a menu. Made a list.

Then, checked the bank account.

Amazing what a family of drug addicts antibiotics lovers can do to the bottom line. Geesh.

So, Kati and I got online and googled "how to feed your family for free ha ha ha" or something like that.

And re-wrote the list.

We had pretty much written off a Thanksgiving meal this year (it's just us, no family), but I was determined. I'm not a big turkey lover, but boy, my husband is.

And this is what I accomplished:

Download menu_11.15.doc

Download grocery_list_11.15.xls

Some of these meals I bought enough for doubling and freezing ... and ended up with two turkeys (25 pounds/.68 pound) so basically, we have over twenty dinners in the house now.

Guess how much ...

come one .....

$130.38

We're ROCK STARS!

Yes ma'am, we are.

And a very special THANK YOU to Jules for my awesomely wonderful Christmas design.
It's been waiting and waiting for it's time to be published, and tonight I thought ~
It's Time!!

So, Fa La La La La Y'All!

Speaking of which .. don't forget this is coming!

Thank you.