Patience Test, Part 1

PATIENCE:  ALLOWS LIFE TIME TO FALL INTO PLACE (from "An Iota of Truth" BlogSpot)

 

It’s been 53 days since I was placed on the lung transplant list and I thought it was time to pass along a few insights – on patience in particular, since that is what my last blog was about.   

First, patience definitely is not something that is inherently there just because you think it is.

Next, is patience really all it is cracked up to be? 

And finally, when have you been REALLY tested? 

What exactly am I getting at?  I have some great analogies I will save for the next blog, but for now, just think about this … what have you done lately that required more patience than you thought you had.  And then, how did you handle it when you were surprised you didn’t have it in the abundance you thought you had it.

Just some food for thought, since I have been processing this concept over and over. Maybe you can help me uncover some great secret I'm missing out on.

 

Now going a different direction, several of you have asked a little more about how I got into this predicament in the first place, of having my lungs wreck havoc with my life.  The answer to the first question I am always asked:  NO, I have never smoked, nor have I ever been around second hand smoke other than getting in and out of WalMart. If you don’t understand this reference, your local WalMart must have a more effective employee smoking area.

So here is the story, the short and oh so sweet version:  In 1994, I was diagnosed with Rheumatoid Arthritis.  Fast forward to 2008.  After extensive evaluations at Scott and White in Temple, Mayo Clinic in Minnesota, and National Jewish in Denver, I was finally diagnosed with bronchiolitis obliterans as a result of my rheumatoid.  This happens in approximately 2% of patients with RA. Oh yes, that feeling of being special is coming through loud and strong.

According to its definition, BO is "a rare and life-threatening form of non-reversible obstructive lung disease in which the bronchioles (small airway branches) are compressed and narrowed by fibrosis (scar tissue) and/or inflammation.”  How’s that for a fairly crummy way to start your day? 

Even with supplemental oxygen, the progression of the disease has been gradually affecting my ability to live life the way I was expecting I would. It is especially noticeable with physical exertion.  On my last Pulmonary Function Test, I was at 21% lung function and dreaming of what it would feel like to be 100%.   However, do you have any idea how many things you can do while sitting?  To Don’s dismay, I haven’t perfected cooking, but I am working on organizing my photographs in preparation for digital scrapbooking, I just got Photoshop Elements so now I have to learn how to use it, I have been known to play a computer game here and there, I have gotten addicted to Pinterest, I am working on a few very fun projects, I have downloaded all my CDs into iTunes, I am trying to computerize all my files of papers, but there is so much more I still haven’t gotten to yet.  There just aren’t enough hours in the day!

What does the future look like?  With new lungs I will walk out of the hospital without supplemental oxygen!  But they say it will be about 6 months to a year before I am back in the swing of things.  And then for the rest of my life, I will be on gazillions of dollars’ worth of fabulous drugs that will enable me to keep on living … and Don to keep on working? And/or great insurance that doesn’t cancel me!

So, the big question is:  Has patience let my life fall into place?  Stay tuned for Part 2…….

And that is the short and sweet.  Now, what am I requesting of you?  Continued prayers of course, but let me be specific: 

1.      For the continued presence of God in my understanding of patience.

2.      For those people with severe health issues who don’t have the incredible support system I have.

3.      As always, for the family whose loss will be my gain.

Love you all for your continued support and prayers,

Nancy

I Got A Gift!

 

God gave me a gift. It’s a gift I asked for.  It’s a gift I prayed for.  It’s a gift I desperately needed.  I wasn’t expecting to get it quite so soon. And I definitely wasn’t expecting to get the gift in such abundance.

The Lung Transplant Coordinator as well as the Appointment Scheduler that were working with me both wish I would have asked for this gift earlier.  The girl that works with the apartment where we will hopefully stay in Dallas wishes it would have come earlier.  My sister who had to put up with me during my week of testing wishes it would have come earlier.  And oh how Don wishes I would have asked a LOT sooner.

The gift?  It’s patience.

Without this gift, there are a few things that would have been different.  I would not have been able to relax and enjoy a week with my daughter.  A whole week!  Of course that included her family so what could have been better?  I would not have been able to enjoy an afternoon with a dear friend from high school.  I would not have been able to spend a long weekend talking late into each night with another incredibly special friend, laughing, crying, remembering.  I would not have been able to enjoy the time spent with my mom as she celebrated her 85^th birthday. I would not have been able to relax as Don and I spent some much needed time along with a priceless conversation as we talked about how all this has affected our relationship.

Without the patience God recently gave me, I would have been much more anxious just waiting for the phone to ring. I would be spending every minute with the phone in my hand, my heart racing every time it goes off.  I would be sitting at home with the car backed up to the front door and the engine running.  I would be just a bit grouchier than usual because I am ready, NOW, and what exactly is the holdup here, folks?  I mean come on, I would be shouting I'M READY NOOOOOW !!

But WITH this gift? I can keep thinking of things to add to my packed bags.  I can think about the projects I want to do while I am recuperating in Dallas. I can gather my supplies for all the things I want to do.  I can try to get the piles of paper on my desk organized and put where they really belong.  I can get ready to leave my home (and my bed?) for 3-5 months.  (Wait…this is a gift????)

In truth, I am handling this waiting much better than anyone expected.  I mean, it’s only been 23 days since I got the ‘I Am On The Transplant List’ call.  Some people wait 4 years for the ’Come To The Hospital Now’ call (in the future, I will refer to it as just ‘THE Call‘), but my Lung Coordinator thought there would be no more than 6 months of waiting.  And I’m only at 23 days?  What do I have to be impatient about? Well, I’m really kind of ready to get on with a different phase of life. I’m ready to quit spending so much time sitting.  I’d sure like a deep breath of air. I’d really like to go for a walk and still be able to breathe. I’d like a really good laugh without the worry of running out of air. I’m really kind of hoping I will be ready to get back on the tractor by spring. I'd like to actually 'swim' in the pool when it gets warmer. And I am definitely hoping we can have the grandkids again this summer.  But much much more than all that ... I am praying that my Dad’s health holds out. 

In reality, I can live with all those things whether the lungs come my way or not.  I constantly look at those who suffer so much and I constantly give thanks for MY Truly Blessed life.  But thank you for indulging me in a little bit of self-reflection. And, I do have my list of what I’d like you to pray for:

1.  My dad’s health.

2.  My mom’s ability to handle the stress she is living with of watching Daddy’s decline at the same time she sees my struggle.

3.  For God to be preparing the family who gives me a new life.  I want to know that they know God.

With love and thanks,

Nancy

 

 

His Work of Art

HIS Work of Art
I have packed my bags, arrangements with Care Flight are finalized. When the call comes, I am ready to go. 

I have also had a few days to process where I am. That time has been somewhat limited due to a visit with Stacy, Shane, Grace and Jeremy, the Colorado kiddos.  But grandkids are definitely the best kind of wonderful distraction! They were here when I got the ‘You are on the list’ phone call and they presented me with a super special Survival Kit they had prepared.  Such sweetness!!  We were also able to spend some time with my mom, dad, sister and brother-in-law, so my processing AND my Facebook time has not been at the forefront of activity (and that's not such a bad thing!).  Hence, there have been very few acknowledgements of the tremendously supportive comments, nor has there been a lot of time for the swirling-around-in-my-head-scenarios-that-I-need-to-stay-away-from.

What I do know is that these pictures somewhat define what is going on inside my head.  The top picture is of a fabulous blown glass sculpture in the lobby of one of the UTSW facilities.  The other is a close-up of part of that sculpture.  You will immediately be able to see what I am referring to.  There is this striking piece of art … but then look at all the details that are required to get it where it is.   Please realize, art is all in the eye of the beholder, right?

And the moral of this story?  So simple.  I AM going to feel like that incredible piece of art, but what is it going to take to get to that point?  A mind that is going in multiple directions, blowing up at the strangest times, never really looking like it knows what is going on, but all coming from a single source of support and then magically, after hours of painstakingly detailed work from lots of different sources, coming out as a magnificent work of art. 

Ok, so that might be taking it a step too far.  But I think you get the idea.  I can’t define it, I can’t describe it, I can’t imagine it.  I can only live it.  Live every moment until that phone call comes that says it’s time.  And then we go and start the work of putting it all together, all with the especially unique support that Don brings, as well as the dozens of others it will take for it to stand straight, tall and be a work of art.  And with God holding tight to all those wild crazy pieces that look so random,  knowing where they all fit to make this HIS Work of Art ... oh yeah, I can't wait to see what He is creating!

So, I am again asking for the help you have offered:

1.       Prayers for the phone call that says it is time to go start this process (or for our patience   while we wait!)

2.       Picture the piece of art that takes patience to assemble.  Pray for that process.

3.       Prayers for the foundation that is required before this process can even begin.  Yes, I am referring again to the family who will have to make that extremely difficult decision to let go.

Once again, we thank you for the phenomenal amount of support that has been expressed.  And I continuously thank God for YOU as well as for this amazing life He has given me.

Nancy

It is Official

I just got the news...I am 'ON THE LIST'.
So what does that mean?  Beats me.  I just know this is the point I was praying for.
We will figure out the next step tomorrow!
Thank you, thank you all

 

The Little Brat

"The Little Brat that Grew Up"

 by N.S. Miller

 

Daughter, Wife, Mother of Two Boys,  Mother-in-Law, Thrift Store Fanatic, Usher at Bass Hall, Aunt, Friend to Everyone She Meets, Sister, Retired School Librarian, Middle Child, Lover of Children's Books, Teacher of the Year, Queen of the Scholastic Book Fair Extravaganza 

 

Yeah, there are a lot of things you know about Lynda Bishop.  But, there are a few things nobody ever talks about anymore.

 

She was a tattle-tale.  As far as little sisters go (yeah, believe it or not, she is younger!), she was the brattiest. She ‘borrowed’ clothes without asking. She would sneak in and play with my make-up.  My shoes disappeared with no explanation.   And if I had friends over?  Oh, my.  She always thought she had to join us.  There was no privacy.  And of course, we don’t want to talk about what she did when a boyfriend showed up.  She could get by with anything and believed in the “easier to ask forgiveness than permission” theory. She even got to shave her legs at a younger age than I was when I got to shave mine (And why?  Because she didn't ask permission!).  Between Lynda and our brother David, they got to do everything. (Well, Mom and Dad might think I am exaggerating a little bit here.)

 

But let me tell you the rest of the story.  She grew up.  And now …

If you are ever stressed, upset, concerned, going through a bad time, call me for Lynda’s  number.  

If you ever need someone to make you laugh, Lynda can do that.

If you ever need someone to realize you are taking yourself way too seriously, oh, can Lynda do that.

If you just need to cry, Lynda lets you cry for a little while and before you know it, the tears turn to laughter.

If you need someone to talk FOR you, Lynda is an expert at that.

If you don’t remember what the doctor said during that consultation, Lynda took notes and she can look it up for you.

If you need a strong friend who’s got your back, Lynda can do that too.

If you want a funny story, get Lynda to tell it.  She can find 'funny' everywhere she goes, no matter what she is doing.
And if you need someone to bounce your new blog idea off of, decide whether it's appropriate to say something and then proof read it?  Oh yes, email it to Lynda.  For fairly apparent reasons, she didn't get to put her seal of approval on this one.  Hope it's not two obvious (tee hee).

 

She can always make Daddy laugh.  She helps take some of the stress off of Mom.  She has a way of seeing what needs to be done even when I can’t tell her.  She has a way of fitting in with any kind of a group. She can find the perfect song for every occasion (now do you really think singing "Big Girls Don't Cry" was appropriate during my terrible horrible painful blood test?).

 

My hubby Don compares Lynda to Bounty .... 'the quicker picker-upper".
 

Yup, that’s my sister.  I hope I made you cry, Little Sister!!!  I will love you forever.

Best. Christmas. EVER.

Best.  Christmas.  EVER.

I don’t have any presents under my Christmas tree.  But it’s the best Christmas EVER.  As in EVER in my very whole life.  That’s saying a LOT because I have had some very incredible Christmases.  But have you ever tried to wrap a prayer?  How about wrapping thousands of prayers?  How about wrapping up support, friendship, encouragement?  I quit trying to find a box big enough.

To top it all off, I have to tell you about Josh, my nephew, and his wife Emily.  This is the text they sent my sister Lynda: “We don’t mean to be morbid and please don’t take it that way.  We were just talking and wanted it in writing that if something were to happen on the way home, or really any time before Nancy gets new lungs, that we would want either of our lungs to go to her if compatible.” 

I mean, really .... how could I ever find a way to wrap that up?

Oh yes. BEST. CHRISTMAS. EVER.

It's A YES ... almost!

It's a YES. Y.E.S.

(Well, It is an almost yes. We have to wait on the actual printed pathology report from 2 procedures before my name goes on the actual list but both doctors have assured me everything looks fine. Just a technical issue that might be resolved as early as Friday. Either way, the committee said yes, so that's what we are calling it. So, therefore......)

YES is my new favorite word. YES brought with it a flood of tears. YES brought a level of feelings that are new to me. YES brought a whole new round of questions. YES made me start new lists of things I want to get done....and a new round of lists for Don to go along with it. YES helped clarify a future that was somewhat vague and uncertain. Oh yeah, I'm liking my YES.

I wanted to have a little blurb written and ready to go when I got my YES. But when I tried to get it written down before I got my YES, I realized I didn't know how I would respond or how I would feel. I couldn't do it.

But then when the YES came, I had only been out of anesthesia for about 30 minutes. So how did I feel? I cried. Like any self respecting drugged up woman would do. And it was The Ugly Cry. Yup, that was the one. I mean, what else is a girl to do?

How do I explain the feelings? Overwhelmed. Humbled. Amazed. Those same feelings I had a couple of weeks ago. But they are different. They are deeper. They aren't so anxious. All this poking, prodding, pushing, pulling (I didn't know they would 'squeeze' too!) I was expecting? Yup, they did it. ALL 8 days of it. Everywhere. Every day. But it is all over. And I am going home. To my bed. To my cuddle duds. And to sleeping late!

But, how does this really feel? Joyous in a subdued kind of way. Overwhelmed in a humongous kind of way. Grateful in an unimaginable kind of way. We are going into uncharted territory. I feel like Star Trek, 'where no man has gone before'.

So ready or not, you great unknown world, here we come! I sure hope you know what you've gotten yourself in to!!!

Don is praying for:
1. New Year's Day, in the hospital, sleeping on a crummy chair next to my hospital bed
2. No more carting all my oxygen supplies around
3. Some home cooked meals
4. His tractor driver back!

But above all, we are just saying thank you. Our prayers are prayers of gratitude.

The picture is just a very few of those incredible prayer warriors.