Hope! It's in [the Creator of] our Genes!

      Today is National Rare Disease Day--The motto is "Hope! It's in our Genes" and you wear blue jeans in support of Rare Disease Day.  I decided to modify it a bit for me as my hope is in my God who created me just as He planned for my ultimate good and His ultimate glory.  It's always been kind of fun that Rare Disease Day is in February since it's my birthday month and blue jeans fit right in with my country girl heart.  My family jokes that the only good genes we have are the ones we are wearing.  

     This last year when we moved to Alabama and I started at the clinic they did a genetic panel on me.  They have discovered 50 different genes that cause PCD and can test for 40 of them.  My genetics came back with "two genes undetermined".  Dr. Solomon was like, "It's really interesting--you don't have classic PCD and hopefully as tests for the other 10 genes become available we can test for those."  So I'm rare within the rare.  I did a blog post awhile back called Rare to the Nth Degree where I gave Dad T. all the statistics and he calculated the probability of me being conceived--it was 3.3 in 100 quadrillion--3.3 with 14 zeroes behind it!  But God says in Psalm 139 that I am "fearfully and wonderfully made" and "He knit me together in my mother's womb."  As Joni says, He permitted me to be born with PCD to accomplish that which He loves--making me more like Christ.  It's definitely not an easy road, but it's the road God has chosen for me and He goes before me and I can trust that not a single nanosecond of my suffering is wasted--and five minutes in heaven will make up for all the suffering here on earth.  

     Yesterday in Sunday School, Ben taught on Psalm 73:25 "Whom have I in heaven but You and besides You, I desire nothing on earth."  When we have the right perspective and remember that our relationship with Jesus Christ is of infinitely more value than anything on this earth--we can lose everything in the blink of an eye like Job or thousands of other saints throughout history, but the One thing of most value we can cling to and know that we have Him in this life and more importantly in the life to come--for all eternity!  Once more, it was a very timely message as I await biopsy results today--I should get them today after 1.  Jord and I feel all the prayers and God has truly flooded my heart with His peace that transcends all human understanding!  

     We still have to live in this world though, and while my ultimate hope is in my Savior, raising awareness for the struggles that people with rare diseases face is obviously near and dear to my heart.  I'm going to keep it simple and "Share some rare" from my PCD friends--hope you learn something new and recognize that there's a LOT of people affected by rare diseases in this life.  As believers, may we grow in the grace of entering another's suffering to provide encouragement and hope in the midst of the reality of a lifetime of doctor's appointments, painful medical procedures, more questions than answers, one doctor's appointment that then yields multiple tests and other appointments, the exhaustion from trying to coordinate it all, the financial burden that has literally buried Jord and I at times, the high rate of divorce in couples with chronic illness (75%), and so much more.  Praise God, because Christ died on the cross for my sins (and yours!) and I have repented and trusted in Christ alone for my salvation, One Day all this sorrow and sighing and suffering will flee as I will be in the presence of my Savior and forever free from the presence of sin and all it's consequences! Come quickly Lord Jesus! 

For Rare Disease Day 2018 we asked the PCD (Primary Ciliary Dyskinesia) community, “What are your things NOT to say to a person with PCD?” here are our top ten picks.

- “If you're sick, you should stay home!", but then we’d never go out.

- “Well, at least it’s not CF.” (True, but minimizing the real long term medical effects and feelings of PCD is really obnoxious. I am happy my son doesn’t have CF, but it’s no cake walk having a child with PCD).

- "Do you want a cough drop?”

- “You should really see a doctor about that cough.”

- Lately the one that gets me is "When are you having kids?" Since most don't realize the miscarriages and complications related to PCD and pregnancies.

- We have one child with PCD. Someone told me we should have had more, in case, you know, something happens to her.

- My personal pet peeve: "You should cut out dairy. My kids got ear infections too until they cut out dairy."

- “Just go to (insert holistic Dr here) because your sons on too many antibiotics and needs to get off of them and his inhaler.”

- "Yeah I have that sinus stuff too. It’s bad. Just take a hot shower. That will help!” ugh

- “You should put her name on the transplant list now! Then when you need it, your name will be in there, at the top.” That’s not how the system works....nor is a transplant an easy cure-all, nor does everyone qualify for a transplant, etc.... https://pcdsmiles.com/.../21-things-not-to-say-to-a...

Happy Rare Disease Day 2022! Are you wearing your blue jeans today? “Hope it’s in my genes!

For more information on primary ciliary dyskinesia visit PCDsmiles.com link in the bio

#PrimaryCiliaryDyskinesia #PCDirl #rarediseaseday

Ittook

The Footprints of Jesus

  God has been so merciful and gracious to me during this week of waiting.  I prayed that I would not waste my waiting and He has answered that prayer and encouraged my heart every step of the way.  On New Year's Eve we had a family over from church to play board games and watch the Alabama game.  Travis and Laurie have 9 kids and Travis went to seminary with our current pastor, past pastor, and our community group leader at Master's in CA.  The Christian world can be so small!  Anyway, during the course of the day, Travis asked how we were doing as I was on IV antibiotics at home at the time.  He recommended a book, "The Cup and the Glory" by Greg Harris.  Greg is a professor of Bible Exposition at Master's Seminary and wrote the book after he and his wife lost identical twin girls.  I ordered it and took it to the hospital with me, but due to the side effects of medications, was unable to read more than a chapter at that point.  I'm one of those people that has 5 or more books going at once, so I had picked it up and put it down.  In God's providence, this week after I found out about needing the biopsy, I read the chapter entitled, "The Footprints" and he's drawing off of 1 Peter 2:21-25:

"For you have been called for this purpose, since Christ also suffered for you, leaving you an example for you to follow in His steps, who committed no sin, nor was any deceit found in His mouth; and while being reviled, He did not revile in return; while suffering, He uttered no threats, but kept entrusting Himself to Him who judges righteously; and He Himself bore our sins in His body on the cross, that we might die to sin and live to righteousness; for by His wounds you are healed. For you were continually straying like sheep, but now you have returned to the Shepherd and Guardian of your souls." 

  He continues on page 91, "But there is another point of consideration in First Peter 2:21 we need to explore.  We are follow upon 'His steps' or literally, 'in the footprints of Him.' In the plural the word means a line of footprints, such as when a hunter follows his game. 'Footprints' is a literal term, not a figurative one.  A difference exists between following in someone's footprints versus following in someone's footsteps.  'To follow in someone's footsteps,' means to emulate or aspire to some aspect of that person's life. 'Are you going to follow in your father's footsteps?' Literal footprints, however, give a different emphasis.  Not only are these 'footprints in general' but the footprints of Jesus.

  "...'Since Christ suffered [hyper] in your place;' suffered in the realm you would not because you could not.  'Leaving you'--present tense, not past tense; whatever He left is still there, it has not been removed--a hypogrammon example or sketch for you to follow in His footprints.  If His footprints remain behind, then He had to walk there first.  He had to lead the way.  He had to establish a trail that no one ever walked before, but now one that never needs establishing again.'"

  "A pertinent questions is, 'But where do the footprints of Jesus go?  If I follow them, where will they lead?'  Perhaps the first inclination would be to assume they go up to heaven and into God's presence.  But, this is not the immediate place they go.  The last footsteps Jesus took on this earth before His death were to His cross.  He was carried to the tomb and placed there.  He ascended to heaven--He did not walk.  The last steps of Jesus took in His pre-resurrection ministry were in walking as the sacrifice in our place, not only so that we would not have to walk there, but even more to the point because we could not.  In this case, we do not walk alongside Him--He walked there alone.  No one went with Him; nobody could.  He was abandoned, deserted forsaken, and betrayed for you and for me."

  "Another aspect of this passage is so childishly simple, we may overlook it.  You do not 'follow upon' footprints by standing still.  You must move forward.  This entails more than merely knowledge about Jesus; it is experiential knowledge gained in the walk itself.  Also, a difference remains between following the line of footprints to the end versus following merely a few steps. 'I'll go with you a little while, but if things don't work out as I planned, then you go on without me.'  Such an attitude became evident for the first time in John 6:66-69 where many would no longer walk with Jesus.  To Peter's credit, that answer he got right.  In response to Jesus' question if they, too, wanted to leave, Peter answered his most logical reply recorded in Scripture. 'Lord, to whom shall we go? You have the words of eternal life.'  And He still does." 

  "You will only walk upon the footprints of Jesus; you never out-walk them.  No matter where you are, or what you will go through, He will have walked an infinitely more intense road in your place.  You will still find His footprints ahead of your own."

  "But there are so many footprints and paths out there for people to follow.  How will I know which ones are His footprints?"

  "You will recognize the footprints of Jesus; they are the only ones left when all the others stop.  You will recognize His footprints; they are the ones stained with blood, as He heads for our cross.  You will recognize the foot-prints of Jesus; they are the ones that have your name written all over them."

     And that is just ONE time the Lord encouraged my heart with the perfectly timed truth.  I could tell you of so many "little" blessings this week that aren't so little when you are walking through deep waters.  Once more, providentially, our ladies Bible study group is going through the book, "Trusting God" by Jerry Bridges and last night we finished up chapter 12 on "Trusting God in Adversity."  On New Year's Eve, Travis also asked if I had studied 2 Corinthians in any depth.  I haven't but after he asked that question and said that the whole book is Paul walking through suffering, God keeps putting verses from that book before me.  Last night was no different--Sarah opened study by asking me to read 2 Corinthians 1:3-7

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.  For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ.  But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer; and our hope for you is firmly grounded, knowing that as you are sharers of our sufferings, so also you are sharers of our comfort."

     So much comfort in that passage! And that's just the beginning!  2 Corinthians 4:16-18 talks about our outer man decaying and our light and momentary afflictions producing an eternal weight of glory beyond all comparison and then of course you have the famous passage of 2 Corinthians 12:7-10 where Paul pleads for the thorn in the flesh to be taken away from him three times but instead of taking him out of his painful circumstances, God increased the grace to persevere.  Joni says "the harder we lean into Jesus, the stronger we find Him to be."  I've been leaning hard this week and O my sweet Savior is so precious and strong and faithful and compassionate and merciful and awesome and mighty!!

     I was also greatly encouraged yesterday by the multitude of birthday posts on facebook, phone calls, and texts from people literally all over the world and country.  My pediatrician from when I was 7 who walked through a brain tumor that kept her and her family from the mission field for years, to a dear friend that we met in Great Falls, MT, my sweet sisters that have walked the long road with us--Jenn since 2005, and Shirley and Candy since 2007 when we met at Sovereign Grace and then Hilarie since 2011 when we met at Grace Bible in Phoenix, to my precious family--Mom, Jen, Jus, Kyle, Josie and my sweet nephews that all sang me happy birthday over video chat and then my new family here from Grace Community Church of Huntsville--Jord and I are so humbled by the gracious love and care you have poured out for us over this last year--from your constant prayers to your encouraging texts and phone calls--meals, rides, and so much more.  Constantly pointing us to our Savior and helping us keep moving forward when the road is hard--like Aaron and Hur who provided a stone for Moses to sit on and held his arms up when the staff of God got heavy so that Joshua and Israel would defeat the Amalekites in battle.  We need ALL the parts of the body of Christ--Jord and I could not run this race alone.  Due to covid, tomorrow I will be walking into the biopsy without another human by my side--but I am confident my Savior's footprints are already there and no matter what tomorrow or the news on Monday brings, I am ever safe beneath His wings...As the poem Elisabeth Elliot popularized goes, 

"Do it immediately, do it with prayer;

Do it reliantly, casting all care;

Do it with reverence, tracing His hand,

Who placed it before thee with earnest command.

Stayed with omnipotence, 

Safe 'neath His wing,

Leave all resultings,

Do the next thing!"

And so I will--in Christ's strength and by His grace, come what may!

In His Mighty Grip,

Rachelle 

Walking Through the Fire

     Right before my hospitalization, I established care with a new Primary Care doctor here in Huntsville.  The nurse practitioner sat down and we went over my entire medical history which is obviously a LOT.  I left that appointment with what felt like a zillion other appointments to be made, but the sweet thing was that they referred me and had every single doctor's office call me to schedule so I didn't have to call each office and sit through the "press 1 for this" message and then wait in line to make an appointment and give them all my information etc.  Things that are time consuming when you are making 4 plus appointments in the midst of daily breathing treatments and chest percussion and all my meds and feeling cruddy etc.  It can often be overwhelming.  One of the tests she referred me to was a mammogram due to family history.  I had been told that I should start having them at 35, but as usual, my lungs have taken precedence and things got pushed to the back burner and not addressed.  

     I had the mammogram on February 1st.  The next day I got a phone call--as soon as I answered the phone I knew it wasn't good news because if everything is fine, they don't call you.  She explained that the radiologist had read my mammogram and saw some calcifications and wanted me to have a repeat mammogram and a bilateral ultrasound as well.  My Mom's identical twin sister, my Aunt Netta, had breast cancer at 42.  I immediately hung up the phone and called her cause I was freaking out a bit.  She talked to me and explained that the fact that they were willing to wait a week to schedule the repeat was good news in and of itself because when they found hers, they took her straight back from the mammogram to an ultrasound.  "That's when you know it's serious." I got off the phone and started shepherding my heart with truth.  Called some friends to pray with me and waited.  The morning of my appointment the center called me and they had a water leak and would call me back to reschedule.  I had literally just been reading the book "Trusting God" by Jerry Bridges minutes before they called, so my heart was in a good place to simply accept the timing of the Lord.  After all, He's in charge of that water! I called back a day or two later when I hadn't heard anything and they asked if I wanted to wait until their new ultrasound machine was installed in a couple of weeks or if I wanted to schedule at a different facility.  I chose to schedule at a different facility and that appointment was today.  I did the mammogram and Debbie told me, "Oh it could be calcifications from your port!" which Aunt Netta had thought of and told me in a text a few days after the first mammogram.  I went in for the ultrasound and the tech has been doing breast ultrasounds for 19 years.  I asked my "typical" questions and we talked about her teen boys and their sports and I talked about all the nephews full of energy in my life.  Then she took me out to the lobby and said that I needed to wait to see if the radiologist wanted her to get more images.  First red flag went off, but I continued texting people I was texting verses to or something.  Then she comes back out and says the radiologist wants to talk to me and takes me to a room by myself.  I had literally just texted Jord, "Just finished ultrasound and waiting to make sure they don't want more images.  My heart is in a peaceful place." Then, "Radiologist wants to talk to me." "Ok suddenly not peaceful, please pray."

     In that moment my heart was racing and I was holding back the tears and doing my best to take my thoughts captive.  I started reading Isaiah 43:1-3a "But now, thus says Yahweh, your Creator, O Jacob, and He who formed you, O Israel. Do not fear, for I have redeemed you; I have called you by my name; you are Mine! When you pass through the waters, I will be with you; And through the rivers, they will not overflow you.  When you walk through the fire, you will not be scorched, Nor will the flame burn you. For I am Yahweh your God, the Holy One of Israel, your Savior;" I kept reading a few verses and landed on the beginning of verse 5, "Do not fear, for I am with you;" I read it over and over and Jord had texted "It's fine." "Just remain calm".  Then in came the radiologist and started talking.  I went into "medical" mode.  "So we find calcifications on mammograms all the time.  Some are very obviously benign and then there are others that are irregular and obviously cancerous.  Yours are somewhere in the middle." "Of course they are lol."  She went on to explain that I would need a biopsy and how they would do that.  I was told I'd talk to a nurse to talk about my medical history, "which sounds complicated, so it might take awhile" so I said, "Can I pee first then?"

     So I have a biopsy scheduled for next Friday morning at 8:15.  Because the calcifications are small, it will be a mammogram guided biopsy and I should have the results the next day--although I just realized with it being a Saturday, not sure what that's gonna look like--probably Monday then.  Anyway, I left the center and got to my car and my Mom called.  I talked with her briefly and then headed to Mom and Dad T's. house.  I had never heard the song on the radio but the chorus was, "Everything's going to be ok, He's got the whole world in His hands." Tears were streaming as I listened and prayed and drove.  Dad read me and Mom some pages from the book, "Dark Clouds, Deep Mercy" by Mark Vroegop and we prayed together.  Then, providentially I had an accountability skype group that I have every two weeks with two friends from church.  It was a sweet time sharing my heart and then being encouraged at answered prayers.  Then Mom and Dad took me out to lunch at Good Company, one of our favorite local restaurants here in Huntsville.  We drove separately and on the drive another song, Fires, by Jordan St Cyr, came on the radio.  Again, I had never heard it, but it was exactly what I needed to hear.  The chorus is, "I will walk through the fire because You are walking with me." In light of the verses I had been meditating on and thinking about I was brought to tears yet again by the great love of my God.  How much He cares for me in all the details of life!  

    The reason I had been meditating on those specific verses is that a long time friend of mine is writing a devotional book for women and sharing 30 women's stories.  My story is one she is sharing and earlier this week she called to confirm some details and we decided that the verses she would use would be Isaiah 43:1-3.  I'm in awe of God and how He works.  I met Janis when I worked at Bank of America and her husband, Tom, actually did our wedding video for us as a gift all those years ago.  We've stayed in contact through facebook and occasional phone conversations over the years and they have faithfully prayed for Jordan and I through all the ups and downs of my health battles.  If you'd like to check out her blog, click HERE.  She doesn't have a publisher yet and the next step for her is to build an email list.  If you'd like to help her, you can go to the link and subscribe to get an occasional email from her--it explains everything on her blog.

    Anyway, HERE is the link to the song, Fires, on YouTube.  I hope it encourages your heart as it does mine.  On top of this, the Zofran and remaining vestibular issues have combined to causes sleeplessness.  I'm going to have to increase some of my sleep meds for the short term as I'm going to bet at 8 and getting up at 3:30 and if that keeps up I will get very sick very quickly and end up in psychosis.  I will be starting the increased meds tonight, so please pray that works as well and I could get some good extra rest over the next few days and that I would use this week of waiting for His glory.  

     As I write, Fires is playing in the background, tears streaming, and my sweet Blue licking my face.  This race is hard, BUT God--He is good, He is faithful, He is wise, He is long-suffering, He is mighty, He is awesome, He is majestic and He WILL complete the work He began in me (Philippians 1:6).  He has walked me through fires in the past, pulled me from flames, and through Him, by HIS strength, I can walk this path too, come what may.  But not alone--my sweet hubby has been constantly checking on me, making me laugh (of course!), and so many people have already offered help and sent verses and prayers and I'm SO thankful for the body of Christ--we need each other!  I will keep you all posted as I have information.  Thank you for walking this journey with me! 

Blue loving on her Momma

Licking my tears away

Elisabeth Elliot Poem that's on my wall

Do the next thing! 

Funny picture I found on facebook and shared on my sister's wall while waiting in the waiting room this morning

Overall, Feeling Great!

 Just wanted to do a quick post and let everyone know I'm feeling pretty good for me!  The vertigo has gotten a LOT better.  I am still taking a Zofran in the morning as I wake up nauseous, which isn't uncommon for me.  However, it's a bit stronger than my "normal" nauseous feeling so I've just been taking the Zofran and that really helps.  I'm still pretty light sensitive so I'll wear sunglasses inside depending on the type of lights (fluorescent are the hardest on my eyes) and if I've been in that store since getting out of the hospital.  My brain essentially has to be "re-trained" for things.  I was fine at church this week but then we went to Five Guys for lunch after and the combination of lights, noise, and busyness, had me struggling a little bit.  I'm doing fine driving during the day, but night driving might be a challenge as the combination of it being in the evening when I'm tired and constantly being barraged with lights might not go well.  

For the most party, my lungs feel good for me.  There has been some extra congestion and some pleuritic type pain in my left lower base that isn't "typical" for me, but I've been tracking it and I follow up with pulmonary function tests (PFT's) and see Dr. Solomon on Tuesday.  It will be interesting to see what my PFT's are--before going to the hospital when I felt super cruddy my FEV1 was 62%.  Upon discharge, it had gone DOWN to 53%.  It doesn't make sense to me why it would go down when I'm feeling so much better and definitely something I will be asking Dr. Solomon about.  

I've been able to jump back into life this last week and this coming week is pretty busy.  Somehow, I ended up with 3 doctor's appointments this week, plus ladies Bible study, and then having people over for dinner on Thursday so it's going to be busy.  I'm so thankful I feel good enough to do things though!  I've been taking the dogs to a nearby greenway to walk and that has been good to just go somewhere else to walk with new smells and challenges.  I've been watching some dog training videos on YouTube and having fun working with the dogs.  Blue is so smart--she picks up on stuff so quickly!  Also been enjoying watching the birds at my bird feeders in my back yard and I also transplanted and planted some plants this week with a friend.  I absolutely love living here--the birds are so colorful--there are two pairs of Cardinals, a blue Jay, House finches, Goldfinches, doves, and lots of others.  I always think of Matthew 6 when I watch birds.  Jesus says, "Look at the birds of the air--they neither sow, nor reap, nor gather into barns, and yet your heavenly Father feeds them.  Are you not of more value than they, O you of little faith?"  God cares for the birds of the air and He surely cares for us! So thankful for His wonderful creation to enjoy and point us to Him!  

One of the male Cardinals in my backyard. 

I got an herb kit from Lowe's for Basil and Oregano--we'll see how it goes!

Got bigger pots for my snake plants and got them transplanted!

Roxy with excited eyes cause she's looking at everything at the park.

Got a pic of Blue before she realized the camera was on her lol 

Isn't this pot adorable??