Wading Through Tests and Appointments

     I knew this week was going to be crazy, but still wasn't prepared for how exhausted I have been the last couple of days after a week full of appointments and ups and downs.  I haven't been able to nap lately and for three days in a row I have take two hour naps and groggily forced myself to get up afterwards.  Talk about PCD hangover!  

     Re-cap of appointments:

1) Saw my ENT on Monday and I have a sinus infection but because we still don't know what's happening with the GI system and if it's a bacterial overgrowth or something else going on, neither my lung doc or ENT want to put me on anything for my "normal" stuff.  So I've been irrigating like crazy but I think that's part of why I've been extra tired as well.  Pray that the sinuses wouldn't "feed" into my lungs and cause a lung infection--it's the last thing I need right now!

2) Saw the Endocrinologist (thyroid doc) on Wednesday.  Dad T. took the day off so he and Mom T. could be with me.  So thankful for them!!  On the upside, my thyroid levels had normalized in my most recent blood work.  He said that back in June he was not surprised with how sick I was that my levels were off.  On the down side, he is testing me for a super rare, not the best thing to have syndrome.  He told me multiple times, "You don't want what I'm looking for."  At first I was thinking, "I just want the answer" but when I got home and started looking into it more I really don't want what he is testing me for.  I've had to pray hard to take thoughts captive and trust God's sovereign hand.  In talking to Jacob, one of our elders, he reminded me that until there is something concrete, it's all "vain speculation."  Been recalling to mind Matthew 6 a lot and repeating verse 34 "So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."  I've read through that chapter many a time and my dear friend Candy and I have prayed through it together and reminded each other of its wonderful truth's over the years.  She called Wednesday afternoon when I was in "freak out" mode and we were able to pray together and she reminded me of His truths once again.  God is so gracious to always provide exactly who or what you need right when you need it.  Candy was just calling to check in and "happened" to call right when I needed truth spoken to my heart the most.  Thanks for always being there friend!!!!  I'm so incredibly thankful for the sweet friends God has blessed me with--friends that are there when I need a shoulder but they also speak truth to my heart in the midst of the tears in a way that reminds me of His truth, especially when I don't want to hear it, but need it more than anything.  

3) Had the gallbladder hidascan on Thursday morning.  I had to fast for this test and lay still on my back for an hour.  I was able to get up and move around, but then had to lay right back down for another 20 minutes while Sharon, the nuclear medicine tech who was super sweet and a gift from God, injected CCk into my body to simulate a fatty meal.  It did what I was expecting--I got nauseous, pain, and felt generally miserable, and got a sinus headache to top it all off.  The first hour was hard because I had to hold super still--lay someone with lung disease on their back and tell them to hold still and the first thing we want to do is cough up a storm.  I had HGTV to help distract me but the last 20 minutes I was praying like crazy for God to sustain me and get me through.  As always, He did.  Was so thankful for Ingrid and Dena to be my "Moms" and take care of me!  Ingrid had an audio book to listen to that was a collection of smells and all the memories that go with it.  It talked about gardening with Grandpa and his smell and brought back so many wonderful memories with Papa and Grandma.  It then talked about lilacs and describing spring--the perfect thing to keep my mind from straying to feeling nervous about the test.  :)  Dena was waiting in the waiting room when I got out and helped me out to the car and home.  She made my shake to get something on my stomach, got me settled, did the dishes, and left me to do my treatments and rest for the afternoon until Jordan picked me up for my evening appointment.

4) Saw my Naturopath on Thursday night.  He adjusted me again on my left shoulder blade from the fall and gave me some exercises to do to strengthen one of the muscles around the elbow to help that not hurt.  I forgot about my left side being weaker and grabbed a gallon of milk out of the fridge the other day and was immediately reminded that it is still healing.  We backed off some of my supplements and upped Vitamin C to help with the sinus infection.  Like everything else, we can't really "go" in a specific direction until we have some concrete answers. 

For Prayer:

1) That we would remember Matthew 6 and live today for today and not worry about the future that only God can see.  It is tempting for all of us, but how much energy we needlessly waste over things that God has perfectly under control!

2) That we would be able to get some answers soon.  I have to avoid certain foods for the Endocrinologist test for a week, so I won't be doing that urine test until this coming Wednesday.  Some of the tests take two weeks to get any results so we won't know anything until my follow up appointment on the 18th.  In the last week I've had over 20 vials of blood drawn for multiple tests for multiple doctors, so hopefully we should be getting some news relatively soon. 

3) I see my GI doc on Thursday to follow up with the hidascan results and to talk about the next steps, which will likely include an endoscopy, whatever needs to be done for the gallbladder and ask other questions in light of what the Endocrinologist is testing for.

It's been a long, rough summer, but God continues to sustain us for which I am truly grateful.  As with any trial, we are closer to the Lord than ever and Jord and I continue to grow and love each other more and more every day.  Jord truly is a rare gem to treasure--he works long hours, then comes home and listens to me, shepherds my heart when I need it (which has been pretty often this summer!), holds me when I cry, encourages me, helps with house and grocery stuff, and continues to treasure me more than anything on this earth.  So thankful for a man of God who is also a man of his word: he has stayed by my side through more sickness than health in our almost 8 years of marriage and words can never express how much I will praise God for eternity for giving me the man I am proud to call my husband.  I love you honey!!!!!!!  

Last summer, we went up to South Mountain for

a date.  Was fun to just sit and look at the city--

we could even seen the planes take off and land

at the airport.  :)  Nothing like spending time with

my best friend!  

 

Resting In His Everlasting Arms,

Rachelle :) 

       

Two Tests Down...lots to go...and Tribute to my Momma and my Hubby :)

The ultrasound went well, was able to get the labs drawn and was home by 10.  :)  Had a fun time talking with my Momma.  :)  Even at 28, when I'm sick the two people I want the most is my hubby and my Mom...there is simply no one that can ever replace your Mommy.  Thanks for always being by my side through all the pain and heartache...I know it hasn't been easy because I'll always be your little girl and I was an adventure from 24 hours old...actually scratch that...I forgot she had a tumor on her ovary she had to have removed at 19 weeks (or maybe it was 22 I can't remember) and I was her first child.  I cannot even begin to imagine what it was like to have an emergency C-section then be told that your baby girl was being air-vacced to UMC in Tucson (I was born in Douglas, AZ), and that because of the C-section you weren't allowed to leave.  She left.  My Grandparents drove her and my Dad up in their Motor-home...I spent 9 days in NICU and they never could tell them why.  We wouldn't know until I was 13. (Your cilia are instrumental in drying your lungs out from womb to air...my cilia don't function properly so my lungs were not dried out properly, thus causing the collapse...being a C-section on top of that only added to the problem because God's design has a reason for every little detail.  I recently learned that you get your first dose of probiotics going through the birth canal from your Mom!  The more I learn about the human body, the more amazed I am at our Creator!!)  Mom and I are incredibly close and I'm so thankful God gave me you as my Mom...I love you!!!!!!  Now that I've made my family cry, here are some fun pictures with some great memories from over the years.  :)

I learned young!

 

 Recovering from one of my Tympanomastoidectomies 

(AKA ear surgery)  :) 

 Mom and me at a horse show with Goldy and Red

who have both passed on...God gave us a lot of 

great memories with those two incredibly special 

horses!!!

 

 We had family shirts made with 

"I'm the Mom, I'm the Dad and 

Kid #1 through #5" so everyone could

keep us straight at the horse shows :)

This is one of my step-brothers (we 

are all one big happy family though!) Sheldon,

and my Daddy with my Momma and her 

beautiful smile. :)

 Mom and I in Washington, D.C. for the 

8th grade trip.  She taught at Marana Middle

School for 13 years so we all got to go to 

D.C. with her and Jackie.  :) And our 

awesome bus drivers, Dale and Ted...I haven't

forgotten you and never will!!!  :)

 Mom, Me, Justin, and Jenny at one of 

Aunt Dawn's pool parties.  :) 

 Mom, Me and Jen...was just Mom and

Me, but Jen dove her way into the 

picture which is why Mom and I are 

laughing hysterically!  :)

 Mom and Gold, Jen and Dreamer, and Me and Buddy

in May of 2010...we did a "horsey photo shoot" with 

my good (and very talented friend!) Brad Gill.  :) 

Fun Family picture from a couple

years ago minus the boys.  You can't see it

but it was my bright idea to have us go youngest

to oldest with Jen, Jus, and Me, then Jordan

and Dad after me...I didn't think through the weight

issue and who had to hold who up on the slide!

Aunt Anita is out of the shot holding Jen up so we don't all go 

crashing down...Justin and Jordan are doing their best to hold us up 

while Mom and Dad are just cracking up as we slowly slide down 

the slide as Uncle Frederick snaps the pictures.  :)  

     I will keep you all posted on the results and the next steps and how my heart is doing with the "waiting game" that comes with every test.  Someone wiser than me once told me not to pray for patience because then God will give you lots of practice...I prayed that prayer long ago and I'm still getting practice.  ;)  

     Off to do bits and pieces of the loads of vacation laundry that are clean but not put away, go through my massive "stock up because I got 50% off my Arbonne order", treatments, vitamins, sinus rinse, call hospitals and doctor's offices to pay bills and set up budget payments (yep, they are a rolling in about now!),  and oh yeah...still need to call and make an appointment with an Endocrinologist to get stuff going on my Thyroid so I **might** start making more emotional sense to my hubby again....last night I was exhausted and tired and reality was hitting hard and if he looked at me wrong I just started crying.  At one point, he said, "This does not make sense...you shouldn't be crying right now."  Through my sobs I managed to say, "Juu-uuss-sst reaa-aalii-iiize that I'm noo-oott-tttt going to maa-aaakk-kke sense toniii-iiighttt-ttt...I'm sooo-rrrry honey!."  We prayed and God helped, but it's still a challenging evening when he comes home from an 11 hour work day and just wants to relax and we have to figure out how I'm getting to an appointment on Thursday, what I should and shouldn't do, what our plans for the week are, and that budget thing that we need to stick to...how are we doing with that? and so on and so forth...all in the two hours before 10pm hits and we are both catatonic...well he was already catatonic when he got home but had to "uncatatonicafy"...(yes Tom Massa, I just created my own word!) to help me sort through my crazy emotions.  So thankful for a hubby that loves Jesus and loves me and does his best to "love me as Christ loves the church".  He will say he is horrible at that, but so thankful that his heart's desire is there, and though he may miss the mark like we all do, in striving he loves and treasures me and knows me better than anyone else on this earth...God made him for me and as I messaged him from Sedona when he left a day early, "I'm not me without you!".

 Walking at the Renassaince Festival with 

our dear friends, Jeremy and Jenn several

years ago.  :) 

DA BEARS! Christmas at Great Grandpa's :)

Now I REALLY am signing off to go do some of all of the above!

Rachelle :)   

Back to Reality

     We made it home this afternoon and the usual "after vacation" stuff is hitting...I was so wiped out I took a short nap and only woke up because Crash was adamant that someone was at the door...a few minutes later that someone called and it was my hypertonic saline being delivered.  :)  I'm hitting the ground running back into reality...I'm still in vacation mode and tomorrow morning is going to be the difficult and harsh reality setting in.  I have to fast for my Gallbladder ultrasound which is at 8:30 so if you'd be praying for that I would really appreciate it.  The fasting and ultrasound aren't too out of the ordinary for me when it comes to PCD stuff, but right now I'm so nauseous when I wake up and eating rice crackers and drinking my Arbonne fizzy and digestion plus (prebiotic, probiotics, and digestive enzymes in one), is the only thing that saves me some mornings and then some mornings nothing works....like this morning.  I was enjoying the cool morning breeze, sipping my fizzy and munching on rice crackers willing my nauseous stomach to behave but I had to blow my nose and started coughing and as they say, the rest is history. 

     Vacation was a great escape, but this side of heaven, I will never truly be able to escape PCD.  I shepherd my heart with Biblical truths about being redeemed and Christ's child, crack jokes about mucus, entertain kids while doing my vest, push through the pain and forget about it for the couple hours I'm hiking or shopping (Mom and I had LOTS of fun shopping yesterday and this morning!), but inevitably the "PCD hangover" hits.  All I have to do is look around and there is evidence everywhere that my life is not the "normal, carefree, happy-go-lucky" life that I would like to have.  In reality, I don't think there is a single person I have ever talked to that has had life go exactly as they had dreamed or planned.  In our pride, we try to pretend that we don't need God or that WE can do it, or that we are in control but God has a way of using painful circumstances in life to remind us that we are NOT in control and we desperately need Him.  Not just to save us, but every moment of every day.  It is in the valley's that I am closest to Him because my energy fades, my chest hurts, my sinus headaches make it difficult to read, I have to take 20+ vitamins/meds with every meal and some more in between, and getting me out the door for vacation takes lots of room in our vehicle and lots of extra planning.  It's totally possible, but not without lots of help from whoever we are going with and grace and lots of patience with each other!

     To give you an idea, here is what our bathroom sink looked like in Sedona:

   
     And that was for a "quick" get away...and doesn't include my vest or nebulizer or the "just in case" things I take that I'm not currently using but could possibly need at the drop of a hat.  This all has to go with me when I go to Tucson or anywhere so right now it's simply not worth it to only stay one night unless someone else can help me get everything together!  :)

     Don't get me wrong--vacation was totally worth it but with PCD, I pretty much have to run a "cost vs. benefits analysis" on everything I do and then double check my analysis (which is easily swayed by my desires to help others and do the things that I want to do even if it's not the "wisest" thing at the moment) with my hubby who is my resident protector--in more ways than one!  :)  So was packing all this stuff up, Mom and Dad paying extra money to shop at Whole Foods because my body is demanding that I have pretty much zero sugar (I had ONE KERNEL of Jordan's peanut butter captain crunch cereal and immediately got a sore throat!), very little meat, no dairy, etc worth getting away this weekend???  YES!!  They were sweet enough, not only to take us on vacation in the first place, but to buy expensive snacks that were yummy and I could enjoy and not worry about hunting for something to eat among all the "normal food".  Speaking of "normal" food, I'm also getting extensive GI labs drawn tomorrow, which includes the Celiac test for gluten...I always said that at least I could eat whatever I wanted with PCD but that is slowly fading away as well.  I LOVE my bread, but thankfully, I love to cook and I already have several great resources if something else comes back wrong.  At this point, I've pretty much made up my mind that nothing in my body (except my heart!) is functioning normally, so I don't think much would surprise me after these last two months.

     I will try to keep you all updated, but the coming weeks will involve lots of tests and doctors and I'm not sure how my body will react to everything, so I'll be taking one day at a time, trusting in Him as Matthew 6 reminds me to.  :)  Thanks for your prayers and here are some more pictures from vacation!

 Loving my new truck! (Just in case you didn't know...)  :) 

 Jord "loving" the hot tub lol ;)  

Sporting my "purple bling" from our shopping sprees :) 

Loving life and serving Him,

Rachelle :)  

 

      

 

GI Appointment Down and off to the Tests

     I REALLY liked my GI doctor...he was personable, he listened, reassured me, and is starting with the least invasive tests and seeing what happens and then on to the more invasive.  Thank you so much for praying...God is so good and so faithful!  Yesterday and even this morning I was a wreck, but I knew lots of people were praying, Jordan was with me for the appointment, and friends and family texted, emailed, and called me with verses and encouraging words and listening ears.  I had to stay at the dealership Jord works at a little longer waiting to sign the final papers for my (oops, OUR...) truck (which makes me smile every time I see it, drive it, or ride in it...living a dream you've waited 15 years for is super sweet!!!) so I left later than I had planned.  But it was definitely in God's plans...on the way home a new song by Kutless came on the radio called "Even If"...the main chorus line is "Even if the healing doesn't come, and life falls apart, and dreams are left undone, you are God, you are good, forever faithful One..."  Wow.  I was driving down the freeway with an arm lifted and tears streaming down my face, but they were worshipful tears.  Yesterday my heart was anything but peaceful.  Even after talking to Jordan last night after we went to bed I just started crying.  He held me and let me cry..the tears subsided and then started all over again.  I got up and got my IPOD to listen to worship music...the tears still came with no sleep.  It was after 1 by the time we finally fell asleep.  I read the Word and prayed and got ready for the appointment.

     Once I was there, the "auto-pilot" seemed to kick in as I filled out paperwork and gave them my insurance card, the stack of records to copy, paid the copay and all the things I've done millions of times in the past.  It was nice having Jord there to lean on...having him there to make the occasional smart-Alec remark to make me smile or just say something random to keep my mind from wandering was exactly what I needed for this appointment.  He knows me so well...God made us for each other and blessed us with meeting young and having the opportunity to spend a lifetime together.  The end of this month will be 10 years ago that we met at a Funtasticks in Tucson for a miniature golf "group" outing which ended up being like a double date...but that is definitely another story for another time.  ;)  Here are the "bullet points" from the appointment:

1) Get the gallbladder checked out.  First is an ultrasound then depending on those results will schedule another test where they inject die and test how the gallbladder is functioning.  

2) Labs to test a bunch of different things including Celiac disease, liver enzymes, and lots of other things that I understand but am not good at translating from medical lingo to layman's lingo.  With the blood work, they want to make sure it's safe for me to do an Endoscopy or Colonscopy since my Vitamin K has been so low.  Vitamin K helps with blood clotting, which is why I have been bruising so easily so if it is too low, it is too risky to do the scopes.  

3) Once we find out all those results, we can determine if scopes, upper, lower, or both are necessary and go from there.  

That's pretty much exactly what I expected and part of what I was letting overwhelm me yesterday.  If you count, there are three separate procedures to start, and then the potential for another visit to the office, one or two procedures, and a visit with the referring surgeon when they figure out what might be wrong.  And that's only if nothing shows up abnormal.  If I get an abnormal anything at the beginning, then that leads to more extensive tests, procedures, appointments etc.  And I still have to make an initial appointment with an Endocrinologist to get my Thyroid checked out.  I'm seeing my Naturopath every two weeks right now, in a couple weeks will re-check with my lung doctor, and still waiting on some test results from my trip to North Carolina at the end of June.  It's enough to wear a healthy person out just thinking about all that.  Then add the fact that Jordan just started a new job where instead of being gone from 8-5 and coming home for an hour lunch, he is gone at least 10 hours a day, most days 11-12, moving three times in the last 6 months (and Jordan had a heart attack in the midst of all that!), my sister getting married, and trying to figure out how to emotionally process all these organ systems and take one step at a time.  Whew.  Oh yeah, and it being "that" time of month makes everything seem 10 million times worse.  And I can't remember EVER being this sick and this physically worn out and exhausted and one complication following another (oh yeah...still need to get my clotted port taken out!), for this long...and it's just the beginning of a long road.  Instead of being overwhelmed this afternoon, God has flooded my heart with His peace that passes understanding...and I believe it's the answer to prayers from all over the world going up on my behalf.  I will leave you with the lyrics to Kutless' "Even If " song.  :)  Click here to play the song and read along below :) 

"Even If"

Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

Lord we know Your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are

You’re still the Great and Mighty One
We trust You always
You’re working all things for our good
We’ll sing your praise

You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn’t come
Even if the healing doesn’t come 

Me and Safari ready for the GI Adventure :)

My heart resting in Him,

Rachelle :) 

             

      

The Roller-Coaster Called Life

Roller-coasters are fun to ride and life is a lot like them...there's good moments, bad moments, sad moments, scary moments, joyful moments, up moments, down moments, loopy moments, inside-out-upside down moments--all wrapped up into one wild ride called life.  In His wisdom, God introduces us to life slowly.  A newborn has little to worry about except to eat, sleep, and go potty...and be snuggled by adoring friends and family.  From his or her first cry the little one's Mom and Dad is there to soothe, console, change the diaper, make funny faces, rock, or any other assortment of things that worked last time but doesn't work this time...that "parent manual" every parent wishes they had doesn't come with the baby.  We grow a little and to our chagrin, we learn that Mom may not be there at the first sound of our cry because lo and behold our older brother or sister just wet their bed and the phone is ringing and Mom is trying to do 10 million things at once...just read this blog post by my sweet friend, Heidi, who has three boys, ages 4, 2, and 6 weeks.  Any Mom with grown children will laugh along with her and remember the "good old days" when their kids were little and wise women will encourage the Mom of little ones to hang in there and enjoy every moment because life goes by fast.  One moment they are consoling their infant and the next they are trying to figure out how to guide their teen into the adult years.

     I was listening to AirOne (a Christian radio station) the other day and the DJ was talking about how you never hear anyone say life is going by slow.  I remember uttering those words as a kid when the summer seemed to drag on so long and my brother, sister, and I had exhausted our imaginations with tree forts, gymnastic routines (this one lasted longer if we had just watched the Olympics!), hours of playing house or school, and we simply couldn't wait for school to start so we would "have something to do with our day".  (Never mind the fact we neglected those chores that Mom and Dad had to keep after us to do...we had plenty to keep us busy, it just wasn't what WE wanted to do)  :)  At 28 with my 10 year high school reunion coming up, my little sister getting married, and my health in a "down" cycle, God has caused me to reflect deeply on life and the past, present, and future over the last several months.  Last summer (my first in Phoenix AKA "Concrete City") seemed to drag and I couldn't believe it didn't cool down like Tucson did in the morning so we could at least walk our dog, Crash, in weather that was under 100 degrees.  I wasn't looking forward to the heat this summer, even though I have lived in southern Arizona my entire life.  Now it's August 1st on the calendar and in my brain, it feels like we should just be starting June.  On the one hand I'm excited because fall and cooler temperatures are around the corner...which also means Jen's wedding, a potential San Diego trip, my 10 year High School Reunion, new doctors appointments (hopefully with answers to some of the "unknowns" right now!), resting and getting back up to baseline, being able to be outside and ride my horse at a "decent" hour of the day, the holidays (hope I don't stress anyone out reminding you how fast that's coming!), and all the plans I've made this summer for "when I get better."  I told Jordan the other day that if I am able to follow through with all of my plans, I'm booked to the end of the year!  ;)   Speaking of the end of the year, we can't forget the all important Chicago Bears vs. Cardinals in ARIZONA which means, (Lord willing of course!) I will get to go to my first Bears game in person!  Long story short, the end of the year is going to be here before we know it.  

     Ephesians 5 talks about "redeeming the time".  Several years ago at the beginning of a new year, one of my goals or resolutions was to get better at "redeeming the time" the way GOD wants me to spend my days.  It can be so easy to plan our future without a thought to the fact that God's plans for our future (or our day!) might be different than ours.  As we look to the future, often we cannot help but to think about the past because our choices in the past affect our future.  If I had a dollar every time I thought or prayed, "God if only we would have known about that BEFORE we made that decision, we would be in a much better place right now!" I'd be a billionaire.  When defining "justification" and "sanctification (Click HERE and go to Conviction #5 for a detailed definition of these terms), I can't count how many times I've heard Pastors or Bible study teachers say, "Now if it was OUR choice, we would skip sanctification all together and go straight from justification to glorification, but God's ways are not our ways and in some way that we don't understand, He is glorified best as we grow and struggle and go through trials to show His strength at work in us."  It's often in those difficult valley's that we grow the most.  Today was one of those days where it seemed no matter how much I prayed, or reminded myself of the truths of the Gospel, or had others pray for me, or sobbed on my sister's shoulder only to turn around and be sobbing two hours later, my flesh continued to fail me and my thoughts wandered and my emotions took over.  Thankfully, I know the TRUTH in my head and can continually (second by second it seemed today!) shepherd my heart back to Him.  He is in control.  But Lord I am SO tired and I DON'T WANT to ask for more help.  I'm sick and tired of being sick and tired.  I am His child...the sufferings of this present age are not WORTHY to be compared to the glory that will be revealed...but Lord, I hurt and I just want my husband to be home this second so he can hold me and tell me it is all going to be OK, and then Crash comes over to lick the tears off my face, and I remember the promises of Scripture...we don't know what we will be like, but we know we will be like Him.  He WILL complete the work He has begun in me...I've listened to Big Daddy Weave's new song, Redeemed over and over today..sometimes with a peaceful heart, sometimes sobbing and lifting my arms in worship trusting His plan even though this trial and these last two months seem like an eternity.  I have a good day or two and then I try to "do normal" and get exhausted and emotional and frustrated because right now, I CAN'T do normal.  I can't do all the things I want to do for my sister's wedding.  I can't drive myself to Tucson or any doctor's appointments.  I don't want to ask for help, but I KNOW God is continuing to grow me and humble my pride, but trials are still trials.  Life is hard and painful but as Christ's adopted child, I know in my heart of hearts this sin-cursed fleshly body will ONE DAY be glorified and worship Him for eternity...and THAT is where my hope lies and where I get the strength to take the next breath, the next step in the race He has called me to run.  Then I think about the GI doctor's appointment tomorrow or my alarm goes off on my phone to remind me to take another pill, or it's time to do my treatments, but I really need to get those medical records together for tomorrow, but first I have to run to the dealership to finish up paperwork for my dream truck.  Joy, sorrow, excitement, sobbing, peace, trust, joy, sorrow, excitement, sobbing, peace, trust...and repeat and you have my day.

     A very wise man once told me that "Life is like a series of mountains...you get to the peak of one but you are just at the base of another."  He was my Papa that I talked about in my last post.  These were basically his dying words to me.  I was 15 and I can still see him crying (and seeing Papa cry was something I had never seen!) and imparting what he had learned in his 62 years to Shel, as he reconciled with the fact that he was quickly running out of time.  Terminal cancer makes you reflect on your life...just as PCD is causing me to reflect on mine.  While through good management, I can better my "odds" at having more healthier periods for longer times, I am powerless to stop this progressive disease, but because of Christ I can live each day trusting that He IS in control and I AM HIS CHILD, no matter what reeling human emotions I am going through depending on the moment or my circumstances.   I was telling my sister this morning that there is a difference between worrying about the future and all the unknowns and trusting that God numbers our days but still "readying our heart for the battle" that we know lies ahead.  I don't know what the GI doctor will say tomorrow, but in my experience with doctors and my body, I always come out of one appointment with ten others to schedule between tests, blood work, other specialists, try this, or have you heard of that--information overload.  Knowing my heart is already battle weary, I need help putting on the armor to do battle.  And yet the very people I need the help from, I try to protect because I know seeing me hurt makes them hurt...but there is no way around it.  PCD is NOT going to go away (unless God chooses to heal me before heaven, which He is totally capable of!) so those closest to me must prepare for the battle with me.  Yet we don't know what this battle looks like...it may not be as difficult as I think it may be or it could be harder than I could ever imagine.  What we all need to remember--and what my heart needs to trust right now--is that God knows.  He hears my beseeching prayers, He cares and not only that but He ordained this moment and the next and the next--He created the universe and as Psalm 139 says, He fashioned me in my mother's womb.  Whatever science may say, God ordained that I have this genetic defect we call PCD to glorify Him.  As Jesus says in John 9 of the blind man when asked by the disciples if he was born blind because of his sin or his parents sin: "Jesus answered, It was not that this man or his parents sinned, but he was born blind in order that the workings of God should be manifested (displayed and illustrated) in him." (verse 3 amplified Bible) I know in my head God has glorious plans for what He is doing in my life, but right now the "workings of God being illustrated in me" is painful.  However, as many who have gone before me have experienced, we can't get to the peaks if we don't go through the valleys.  When we are in the valley's we cannot see ahead or behind us...all we can do is look up.  When we are on the peaks, we can look back and see the mountains and valley's we have been through and see God's sovereign hand guiding us, and at times carrying us, every step of the way.  Although I didn't know Jesus when my Papa gave me that advice 13 years ago, his analogy for life still rings true in my heart.  Before I share the first of many poem's as a result of his advice I ask you to pray with me for several things:

1) First and foremost, for His peace that passes all understanding to guard my heart and that I would remember the Gospel throughout the day.  
2) Wisdom for the doctor tomorrow and guidance for Jordan and I as we begin a new part of the PCD journey.

3) That I would remember I will have good days and bad days and that I would remember Paul's words in Philippians 3:13-14 "I do not consider, brethren, that I have captured and made it my own [yet]; but one thing I do [it is my one aspiration]: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal to win the [supreme and heavenly] prize to which God in Christ Jesus is calling us upward." (Amplified Bible)

Mountains

 The green valley’s amid white-capped mountain peaks,

The joy of birth, a new life in this world,

Barren lands among falling boulders sweeping down the mountainside,

The harshness and pain of death, losing the one you loved so.

Climbing mountains all your life,

Mt. Everest a major feat,

Reaching the top of a hill, unnoticed at the time.

Working your way through life,

Graduation and embarking upon your new world,

Learning to breathe, instinct led you through.

Facing challenges,

Boulders sweeping you off your path,

Accomplishing your dreams,

Seeing the peak of a mountain past,

But alas, you are just at the base of another.

Cancer raging through a family, tearing lives apart,

A brave man, crying, telling his family not to worry,

For he has just reached the peak of his last mountain,

The last of a series of mountains, the mountains called life.

Rachelle Thomas 

Me and Papa dancing at Alex's wedding

 

Our last complete family picture...we did a

family lake trip before the cancer got too

debilitating. 

Me and my brother, Justin, visiting Papa's 

grave...

     In the last week, I have talked to numerous people who have been touched by death.  An accident on the interstate took the lives of 7 people (a Mother, daughter, and the daughter's 4 kids and nephew...still trying to wrap my mind around so much loss in one family!) that my Mom and Aunt went to middle school with, another family friend lost a daughter, my loan officer at my credit union that I have gotten to know has a friend that suddenly lost her apparently healthy 22 year old daughter, August is the anniversary of a year of losing a PCD pal, Jennifer Horner, and several families in our church have recently lost loved ones, or are in the process of saying their good-byes.  Death is a "taboo" subject in many ways in our culture.  The reality is, unless Christ comes back, we will all face death...the question of the hour is, are you ready for death, or are you clinging to this world with everything you have, trying every diet or the latest health fad that our culture throws at you to avoid that reality?  I was once asked by my PCD pal, Jen, if I was afraid to die.  I got to share with her that while there is the human fear of pain or how I will die, I truly believe I know where I am going when I die and I know that He will walk me through the valley of the shadow of death and that I have a heavenly body to look forward to that works perfectly! That conversation was only months before she would suddenly die from a toxic mix of prescribed drugs in her battle with PCD that ended at age 32 last August.  I am planning to share more of her story, of our story, and the brief 5 months I was able to know Jen in future posts.  In the mean time, please pray for me, for my friends and family that have lost dear ones, and that we may all boldly proclaim the Name of Christ until He returns or calls us home!

In His Mighty Grip,

Rachelle      

                        

Quick Doctor Update :)

After a couple of recommendations and one doctor not taking my health insurance, and the one Jacob recommended leaving the clinical practice last Friday do do hospital only care, I have a GI doc appointment August 2 at 1:15.  I asked the receptionist who she would go to of the three doctors in the office if she had a really rare disease and weird body and needed someone that would be willing to listen and communicate with other doctors...so I have an appointment with the one she recommended.  :)  I looked up his bio on his website and it says he likes football, so I'm wearing a Bears shirt to my first appointment...hopefully he's not a Packers fan!  ;) 

Please pray:

1) That I would be able to get all the correct records together and to the office before the appointment.
2) That I would be able to communicate clearly, succinctly, and graciously, while still advocating for my health--after all with it being my body, I have a pretty big investment. ;)
3) That the doctor would listen and be willing to coordinate care and work with the other doctors currently seeing me so that I get the best possible care and no pieces to the puzzle go missing.
4) That we would do the right tests first and get results quickly so that we can get the right treatment sooner rather than later.
5) That Jordan and I would be able to weigh the information and make wise choices on what tests/procedures/treatments to pursue, wait on, or refuse.  
6) That we would remember the One who is the Great Physician and in COMPLETE and sovereign control over every single cell in my body.  :)   


Thanks for following my story as God unfolds it each and every day.  Looking forward to the future that He has for me and pray that I might redeem the time He has given me the way He wants me to...I am in the process of listening to a message from the 2005 Resolved conference (discovered some gems There!) by Steve Lawson (The Use of Your Time) and these words stung my soul: "Don't waste your time because you will end up wasting your life."  May I run hard after Him every second of every day! 

For His Glory,

Rachelle :)