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 :) 

       

More Heart Shepherding :)

     It's been a weekend filled with fun things and sprinkled with M&M's...but not the kind you eat.  ;)  After being away from church for two weekends in a row (one to celebrate my hubby's birthday and the other for our quick getaway to Sedona) it was so sweet to be "home" with our church family.  They were doing a fundraiser through Macayo's for our missions team that wants to go to Papua New Guinea so we had a yummy lunch to boot.  :)  It was fun getting to catch up with people that I don't get to talk to on a regular basis through our small group or ministry team...actually now that I think about it, through the chaos of the last ten weeks, we haven't had a whole lot of "regular" or routine.  Which has been really difficult for me.  

    Church is a "rock" in our schedule.  Typically, every Sunday morning and Wednesday evening we have church and small group.  Since the end of May, we have made it to one small group and I've made it to  only one entire church service.  I love worship, but when I have to pick between the worship time, announcements, and communion, or the sermon, we choose the sermon.  Our hearts desperately NEED the preached Word to help us shepherd our hearts and to think rightly about our circumstances.  And 99% of the time there is a worship song at the end of the service and then we get to fellowship and catch up with everybody and go out to lunch with friends and fellowship and "break bread" together.  (We are going through the book of Acts right now and there were phenomenal messages on Acts 2:42 if you want to check them out at our church's website HERE under "sermons")  With the internet there is a plethora of great messages to listen to...I've referenced multiple online sermons in past posts, but there is truly NOTHING like being with your church family, worshiping Jesus together, singing corporately, praying corporately, listening to the preached Word corporately, fellowshipping afterwards and spurring one another on (LOVED our conversation today Ash!) to love and good deeds as Hebrews calls us to...simply living life together (transparently!) and loving one another as Christ calls us to do.  People that don't know Jesus or are trying to be "lone ranger" Christians (listen to the The 2010 Resolved messages on the importance of the Local Church) don't know or understand what a special blessing the local church body is.  They are my Christian family.  We sin against one another, and after all the church is full of people, and thus full of sin and problems and "baggage" that we all bring into the mix whether recently saved or the elderly believer that has been following Christ for 50 years.  After all, we are all human and without Jesus, the human condition of being enslaved to sin is all we know.  The bottom line and the bond that we all share at GBC is the bond of Christ, the forgiveness of sins, and therefore if we forgive as He forgave, we can build incredibly deep relationships centered in Christ.  What grace from our amazing Savior!  I can't tell you enough how incredibly thankful I am for GBC...I will spend an eternity worshiping our Savior for the blessings we have received through this local body.  To Him be the glory!  :)  

     And all that to say that we have missed being able to be there for the whole service the last ten weeks and missed being at small group and sharing life and one another's burdens.  I have gotten very creative with "fellowship" so there has been skyping, texting, face book messages, this blog, email, phone calls etc.  My heart has been shepherded well through this deep valley.  As Jacob prayed for those suffering with chronic health issues during our corporate prayer time this morning (including me!) it seems like there are so many suffering physically in these temporary sin-cursed fleshly bodies.  From chronic pain to diseases that flare up bad for brief periods of time, to cancer, to aging bodies that are simply growing older and feeling the effects of the curse more and more every day...there is much physical suffering represented in our relatively small body of 300 or so believers in the Valley.  And yet this body that is weak physically in many ways, is taking the Gospel to the ends of the earth (Italy, Papua New Guinea, Spain, Phoenix, children, family, friends, co-workers, vacation spots, doctors, nurses, lab techs, radiology techs, etc etc) proclaiming Jesus Christ and Him crucified as the ONLY remedy for the human condition of sin and by His grace lives are being transformed as He regenerates hearts and grants new believers repentance.  It is so awesome to have our New Member's and Baptism Sunday's (followed by food and fellowship of course!) and to be able to SEE and hear about the lives being transformed by His grace through His Word, or Omri being faithful to share the Gospel with  his GED students, or Nikki's baptism testimony affecting another young girl's heart, or Brian and Dena being faithful to shepherd their adult children's hear to the gospel through difficult circumstances and God answering the plea of their hearts to save their children.  Life is difficult.  There are many burdens and uncertainties and questions and tears.  But in CHRIST, it is finished...He WILL complete the work He began in me (and all of you who are saved!) and One Day my body will no longer hurt--I will have the energy to serve others that I long to.  Right now God is calling me to rest in more ways than one and there are moments when I am content and there are moments when I am angry and fighting Him tooth and nail for the life I WANT to live but can't at the moment.  It is what I DO with my thoughts and my heart in those moments that count and that is the battle of every believer's life.  Do I humbly go before the Lord, confess my sin, ask for forgiveness, receive total forgiveness and by His grace and in His strength go forward with life or do I hold on to that sin, let my thoughts spin out of control, sin more, become bitter and have that self-pity party or the "why me?" party and have a miserable day because I don't want to get out of that sinful pattern because my flesh enjoys it and it's easier to not fight the battle?  Too often I give up the battle but that is where the believer's God has placed in my life (the first of which is my precious hubby!) come alongside me when my heart is battle weary and help me shepherd my heart...carry me if they must, "talk me down off the ledge" as Jacob put it yesterday.  God has gifted Jordan in shepherding my heart to what is TRUE and I am so thankful for that!  Truth be told--we can't "go it alone" no matter how hard we try.  You will burn out and crash and it will not be pretty--so humble yourself and ask for help, ESPECIALLY when you don't want to--God is growing me in this every day, sometimes moment by moment, but as I humbly receive His help through His people, I am blessing them by allowing them to serve and bless me and Jordan.  After all, we all know "It is more blessed to give than to receive" but if no one is willing to receive, no one can give.  Think about that the next time your pride makes you want to refuse help you know deep down you really need.

     Jordan and I are slowly working on getting things together, organized, and simplified.  Being a homemaker, which I ABSOLUTELY love, my job is to help my husband in any way I can.  Typically in the past, that means I do the grocery shopping, cleaning, meal planning, errands, banking, etc etc.  When I got sick, Jordan would help out, along with family and friends, but I have never been down for this long so we are slowly getting out of "this is the way we do it because this the way we have always done it."  Instead of just running to the store and getting the dog food, stuff at Costco, and the pharmacy, I need to plan ahead and be able to call Jordan and ask him to pick things up on the way home or do grocery shopping together on the weekends.  And the schedule...you mean I REALLY DO have to say no to pretty much everything I want to do...at least that's what it feels like right now.  ;)  I know THAT'S not true, but again, it's that moment by moment taking thoughts captive and shepherding my heart to what I KNOW to be true in God's word and testing my feelings by that.  My feelings are real and there is a difference between sinfully worrying about the future and trying to prepare my heart for the long road and battle I know is likely ahead or sinfully being discontent with my circumstances or simply crying and grieving the loss of not being able to have children or one more "takeaway" because of PCD.  After all, I am only human.  Knowing the difference is where it gets tricky.  ;) 

     That is probably my biggest prayer request right now.  That I would recognize my emotions and know that they are real, but that I would deal with them in a biblical way and ask for prayer when I need it and have my "fighter verses" ready when I am tempted or the emotions rule me...but that I would also known when I just need to cry and cry it all out and tell Jordan to just hold me, let me cry, and pray for me.  

     Thanks for checking in, reading, and praying for us.  God has been answering lots of prayer and as we continue to take one step at a time, I will do my best to keep you posted.  The first round of gallbladder tests and extensive GI labs came back normal.  On the one hand that is a praise, but on the other, it means we are on to the next set of tests, without an answer in sight--and THAT is what is hardest for my heart as it seems to be the story of my life...I can't tell you how many times I have gone through a battery of tests just to hear, "Well everything looks great--all the tests and levels are normal so you shouldn't be having any issues."  That doesn't change the fact that I am still in debilitating pain on a daily basis...at times you begin to wonder if it's "all in your head."  I want the quick easy fix and to get on with life, but God is calling me to be patient, depend on Him and trust that His ways are higher than mine...

Learning to Trust Him More!
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 :)  

 

      

 

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      

                        

Fever Back...Please Pray :)

Woke up feeling great this morning...even went on a walk with my hubby.  Toresa (our roommate) was saying goodbye and she said I felt warm.  I took my temp and it was 99.3...that explains why I'm exhausted and can hardly keep my eyes open.  I took some tylenol and an hour later fever at 99.5, so waiting for that two hour marker when I can take IB profin and have an email into one of my doctors.  So it's an "in bed" kind of day today...going to put a movie on that I have seen a million times over, (thinking "Ever After" one of my all time favorites...or Pride and Prejudice...or Lord of the Rings...or Sound of Music...hmmm I have a difficult decision ahead of me!) so I can fall asleep and wake up and know exactly what is going on.  ;)

Please pray:

1) For the fever to go away

2) Wisdom for doctors

3) That I would truly rest today

4) That I would be able to go to small group...missing it so bad!!

5) That I would trust His plans and joyfully submit if the fever doesn't break and I have to miss small group again.  

Thanks everyone!  Hope you all have a blessed day trusting Him!

In His Everlasting Arms,

Rachelle :)  

Dancing in the rain with Hannah Lemke last summer...

Seemed like a fitting picture for today.  It's been

"pouring" around here with trials, but He is good

and faithful...carrying us through every step of the way

as we keep our eyes fixed on Him!  :) 

The Great Compassion and Mercy of Jesus

I was able to get some good sleep last night, praise the Lord!  Our only "to do's" today involve dropping off a sputum culture at UNC at some point today and then the conference begins with dinner and an introduction to the day tomorrow at 6:30 tonight, but we'll see how I'm feeling.  I'm pretty wiped out.

In God's kindness, I was reading some of my favorite "go to" scriptures for my devotions this morning and went to Matthew 6 and for "some reason" kept reading and landed in Matthew 8:14-17: "When Jesus came into Peter's home, He saw his mother-in-law lying sick in bed with a fever.  He touched her hand, and the fever left her; and she got up and waited on Him.  when evening came, they brought to Him many who were demon-possessed; and he cast out the spirits with a word, and healed all who were ill.  This was to fulfill what was spoken by Isaiah the prophet: 'He Himself took our infirmities and carried away our diseases.'" I was moved to tears by the fact that Jesus paid the price for me so that One Day I will no longer suffer physically but will be able to worship Him for all eternity free from the presence of even an inkling of sin and nothing but a perfectly working physical body.  Those little things I long for at times like these: to take in a deep breath and not have a sharp stabbing pain in my left side, to have energy to serve others as He has served me, to chase the wind on my horse, to go to the beach like Mom and I had originally planned with this trip, and so many other little things that my heart and flesh long for.  In my flesh, I can be tempted to want those things right this second when God's plan continues to be for me to patiently endure the physical suffering with His joy knowing that His Word and His promises are complete.  They are so sure that in Romans 8:28-30 every action is in the past tense. (at least in English but pretty sure its as complete as complete can be...Smed or Scott you can help me out here!)  These are the promises I cling to on days when I am tempted to wish I could do this or that or was anywhere but where God has me.  Then I remember what Christ endured on the cross--the blood He shed, the excruciating pain as He suffocated to death to pay for my sin so that I might have those promises, and suddenly the pain seems like nothing.  And I remember that the ONLY place I truly want to be is exactly where God has me because that is HIS best for me.  :)

Thank you for your continued prayers and love and support!!!!!  Remember Jordan as well...I think he has been sleeping ok, and he is loving his new job, but my cell phone doesn't get service very well here (note to self: we are getting new phone/service next week!) so we haven't been able to talk/text as much as we would normally be able to.

Here's to resting and reading the first Mitford book all day today!  :)  (although the very first chapter has made me miss Crashers...my precious black lab who "chose me" kind of like this dog is choosing the pastor)

In His Everlasting Arms,
Rachelle :)

Adventures at UNC :)

Crazy, fast, up, down, and all around could describe our day.  I'm not a particularly organized person (I WANT to be but somehow I get organized and it all gets unorganized in a matter of time...ladies from GBC women's ministry...I need to heed my own tip: "Just do it!" LOL)  Through a myriad of events, thankfully still under the sovereign hand of a God who is a God of order (just look at the Universe...good thing I didn't have a hand in it!!!), I left records, maps of the UNC campus, and directions at home in Phoenix.  Thanks to Paulina, Dr. Cohen's (my ENT) WONDERFUL medical assistant, I was able to have my recent records emailed last night and I wrote out directions from mapquest, my appointments for the day and thought we were good to go.

I suppose there is truly a reason (albeit I begrudgingly admit this!) that Jordan fires me as his navigator/copilot every time we go somewhere.  I believe his exact words to my Mom before we left were, "If she's your co-pilot, your hosed!"  Thankfully, I married a loving and forgiving husband, but lets just say road trips or going new places together can be very sanctifying to say the least...this morning was no different.

Long story short (maybe!), we finally made it, but not before I was in tears and late for my first appointment of the day.  Thankfully, Katie was super understanding and got my Nasal Nitric Oxide measured.  (You can refer to the PCD website HERE for more details on medical lingo etc.)  I will do more detailed posts at a later date, but for now I'm going to be brief (for me!) so I can get some rest.  :)

Next, we were whisked off to get Pulmonary Function Tests (PFT's...you can google those) and then spent over an hour with one of my very favorite doctors in the world, Dr. Michael Knowles (Click here to find out more about one of my very favorite people in the world!!).  I have some fun pictures to come when I get home!  Going to bullet point the medical things you can be praying for:

1) Inflamed airways: Dr. Knowles explained it like when you get a sunburn your skin stays red, so we need to get the inflammation under control.

2) Hyper Thyroid: Blood work from Phoenix shows hyper thyroid which could explain a lot (weight loss and lots of other things that I have had issues with over the years.)  I've had blood work done investigating this before, but it never came back out of range.  I need to get an Endocrinologist (Thyroid doc) when I get home and get an "Uptake scan" done ASAP and get on top of that.

3) Coughing/Possible Reflux could be causing some of the nausea/vomiting issues.  Barium swallow test to determine reflux etc, and will be following up with a GI doc at home.

4) Vitamin K low: Explains super easy bruising and some other stuff.  Either over growth of "bad" bacteria leeching it or not allowing my body to absorb nutrients (adding to weight loss issue as well), so got more extensive blood work done today (yay more needle sticks!) to test liver enzyme levels (your liver is a factory for the blood clotting mechanism, or part of it, and needs Vitamin K to complete the process) and other issues etc.  Eating lots more green leafy veggies and will be getting a Vitamin K supplement as well.

5) Multiple sputum cultures to go back to UNC over next couple of days while we are here so they get good samples and can see what's really growing besides the Pseudamonas: Aspergillus, NTM or both or neither or something else. 

There is a lot going on here so we don't want to change multiple things and work on everything at once and shock my body and not know which side is up.  Prayer requests in the midst of all of  this:

 1) Praise I should be able to still attend PCD conference because I've been on IV antibiotics for a week, will wear a mask, and not hug/touch anyone with PCD so I don't compromise them.

2) Pray for continued sustaining grace from our merciful God; doing ok, but energy definitely low and that even if I "feel energetic" in the morning after a good night's rest that I would be wise with my time and give my body the time it needs to heal. (Thanking God for the Mitford book Marilyn let me borrow...it will be a good way to keep me in bed all day!)

3) Pray for wisdom with all these tests/doctors visits/follow ups.  My Mom pointed out that I cannot afford to not be organized in this area--it is critical to my health.  Jordan has brought this to me before (more with house stuff but it still applies) so whether I'm an "organized" person or not, I need to confess the sin, stop the excuses, and "just do it" like I said so many months ago.  (Allie, I may be having a date with you!!!)  :)  (Smallgroup this is open for accountability...I need it!)

4) Pray that God would "use this ransomed life in any way You choose" as the Sovereign Grace song goes.  It is truly my heart's desire and I will be meeting people that suffer physically just like me over the next couple of days.  In His providence, I was scrolling through all the Resolved messages I had downloaded on my IPOD and listened to one by Randy Alcorn on heaven.  The one I listened to today was the intro to that Resolved conference (theme: Heaven and Hell)  by Rick Holland on "Death and Dying."  Respiratory diseases are the #4 killer in America (thanks for the research Rick!).  We all will die from something and Jesus Christ is the ONLY remedy for the eternal death we all deserve because of our sin.

I will be in contact with many people whose lives have been touched by respiratory disease every single day.  Their families hurt to watch them suffer, they hurt physically constantly (there is always SOMETHING going on in my body causing some sort of pain...big or little but its there...) and some have lost loved ones to PCD or will lose them to PCD or are hanging onto this precarious life by a thread.  Pray that the Spirit would give me wisdom to know when to speak words of comfort, encouragement, the truth (boldly in love), or just to develop relationships and love others as He has loved me and been so incredibly longsuffering with His (at times stubborn) child.

But praise be to God I am that: His adopted child because Jesus Christ absorbed every drop of God's wrath on the cross to pay a debt I could not pay for my sins so that this suffering I feel right this second is the closest I will EVER get to hell.  Unbeliever take heed: if you reject Christ as Savior this sin cursed world will be the closest you will ever get to heaven.  As Rick Holland said, our culture is very sheltered from death and dying...having a chronic disease rips a little of that shelter away and my body longs for heaven even at 28.  Most people my age don't even begin to think about death or dying but it is something we ALL have to face at some point or another.  Jord and I (and all of my family and close friends) are so much closer because there have already been several times where I have come pretty close to death (multiple posts for other days!) and we have all had to face mortality together.  God still wants me here and has His purposes for this ransomed life and I long to glorify Him with every breath He gives me...and those words have a much heavier meaning when there are times you struggle for every breath.  He is good, He is gracious, He is merciful, He is loving, He is patient, He is kind, He is longsuffering.  But He is also just and holy: look at how He crushed His Son because of sin...sin HAS to be paid for by someone:  Will it be you for eternity in hell or will you heed His call and receive Christ's gracious unfathomable gift on the cross?

In His Mighty Grip and Everlasting Arms,
Rachelle :)  


 

Getting Ready for North Carolina!

First of all, THANK YOU to all you ladies from GBC who gave me rides to and from doctor's appointments this morning.  :)  Can't say enough how thankful I am for GBC! (Anybody in the Phoenix area who needs a good church click here to check mine out!) Anyway, established care with a GYN this morning to go over possible hormone issues that could be causing the throwing up off and on for the last two years.  Left that appointment to come back when I can fast and do the blood work, came home, grabbed some lunch, traded chauffeurs and was off to see my Naturopath in Scottsdale.

Was super excited to go see him because earlier in the week I had coughed so hard that I tweaked my lower back.  He adjusted me (he originally went to chiropractic school oh so many years ago) and gave me some additional supplements to help my body through the IV antibiotic wiping out all the good stuff in my body in the process of taking care of my infection.  Fell asleep on Vivian on the drive home and am currently doing my treatments. (For those of you that don't know what that consists of: Albuterol in a nebulizer then thirty minutes of a chest percussion vest.)

My Mom will be on her way as soon as the protein shakes, bars, and other Arbonne goodies we are taking on the trip get delivered to her house in Tucson.  We have to be at the aiport at 6 AM in the morning...there are several specific things you can all be praying for:

1) Strength and energy for the trip...after my first doctor appointment this morning I was absolutely exhausted and that was only after riding in a car for 20 minutes and sitting in the office for an hour...will definitely need the Lord's grace and provision for the day long process of getting to NC tomorrow!

2) That we get through security in a timely fashion and that it really is ok for me to take my shakes and high calorie, high fat snacks with me because I need much more than airport sustenance right now!  I've lost 10 pounds in the last month through this whole thing and definitely don't have room to lose anymore.

3) Grace and strength for Jordan while I'm away.  He is loving his new job but there have been some physical tolls taken with his heart and body in lack of sleep, being in the hot sun all day on the car lot learning different parts of the business. (and not wearing sunscreen and getting lobster red....do boys ever learn to listen to their wives and actually wear sunscreen instead of having me lather him up to help the sunburn heal after the fact???) ;) He always struggles to sleep while I'm gone so please keep him in your prayers as well!

4) Wisdom for the doctors that will be seeing me.  When I coughed up blood in my mucus on June 4th my mucus was a "normal" color for me.  It was the ensuing not being able to keep anything down, needing saline, finding out my port was clotted, 2 ER's, a Bronchoscopy, and myriads of needles and blood draws and IV's (my arms literally look like a bruised pin cushion right now!!) that overwhelmed my already weakened immune system when the bacteria, Pseudomonas, decided to take over my lungs again.  The ensuing complications with finding a medication that would not have bad side effects allowed the infection to continue to proliferate. We finally found the right one and it is just now starting to take over the infection.  However, this infection was not the original culprit and we need to find what started everything and treat that.  The two possibilities at this point are:
     A) Aspergillus fungus, which I have cultured for in the past.
     B) Non-Tuburculosis Mycobacterium (NTM): You have to have special cultures done for this and there is only a handful of hospitals that have certified mycobacterologists.  They took cultures during my bronchoscopy, but even if its negative here, my ENT (Ear, Nose Throat doctor) said those cultures take 20-30 days to even grow and are extremely difficult to diagnose.  Thus, I could have a negative result here in Phoenix, but it could be a false negative.  UNC (University of North Carolina at Chapel Hill) is certified and we should hopefully be able to come up with a good plan of action.  It could be they do cultures there and coordinate care with my doctors here, or according to the American Lung Association website San Diego has a hospital that is certified as well.  (Oh bummer, I might have to go to San Diego for medical tests and make a weekend stop at the beach!) ;)  Who wants to take me??? :)

Once again, thank you for your prayers, love, and support!!  I will try to keep you all updated as best I can while we are there. Praying, going, and trusting Him!

In His Mighty Grip,
Rachelle :)