A Little Background

A couple years ago I was asked to write the short version of my "life story" for a pastor in New Zealand (which is another story for another day...you'll probably get that a lot here if I can contain myself and truly save the story for another day!)  So here it is as an "introduction" to my life and some basics of PCD ( For those who want more info on PCD click here).

My Story

            My name is Rachelle Thomas and I am currently 26 years old.  I was born in Douglas, AZ in February of 1984.  Within 24 hours of my birth, I developed respiratory distress and was air-vacced to a larger hospital in Tucson, AZ.  I had a collapsed lung and spent 8 days in Neonatal Intensive Care before I was finally able to go home.  Numerous tests were done, but the doctors could not explain what had caused my respiratory problems.  Little did my Mom know, this would be my story until I was 13. 

            I had chronic ear, lung, and sinus infections.  At 11 months I had my first set of what would be 4 sets of ear tubes by the time I was 5 or 6.  I had my tonsils removed and numerous other surgeries, trying to “fix” all my symptoms.  When I was 5, the doctors diagnosed me with Asthma, but that didn’t really fit.  When I was 12, they said it had to be Cystic Fibrosis—and in between they assured my parents I would “grow out of it” when I went through puberty.  Needless to say, none of the above was correct and by the time I was 13 I had had 13 surgeries and still no answer.

            Thankfully, my parents would not take, “We’re not really sure, but we think it has to be Cystic Fibrosis” for an answer.  In the summer of 1997, we made a family vacation out of going to the University of North Carolina at Chapel Hill to visit Dr. Michael Knowles, and his research team.  For 3 days I underwent numerous tests and at the end—we FINALLY had our answer.  One of the tests was a “Mucual-ciliary clearance test”—I had to breathe in radioactive parts and for the first 4 minutes of every 10 minutes for two hours, they X-rayed my lungs to see how much of the particles my lungs would move out.  Normal lungs move out about an average of 30% of the parts in those two hours—mine only moved out 8%.  I was diagnosed with Primary Ciliary Dyskinesia (PCD)—a condition in which the little hairs in my ears, lungs, and sinuses don’t function properly.  There is no cure and it is a progressive disease—you simply have to try and prevent and manage infections when they come.  This is typically through utilizing antibiotics, inhalers and air way clearance therapy.

            At the time, I was still a child and I’m sure my Mom and Dad felt more relief in finally having a diagnosis than I did.  We finally knew what we were dealing with---and that it was never going to go away.  As a kid, I fought Mom on doing my medicines—I would cooperate for a bit, but I would get tired of taking all the medicines and I didn’t like how the inhalers made me feel and would avoid those at all cost.  Now that I’m older, I recognize how I might have prevented some of the lung damage I have now—or at least put it off a bit longer if I had done my treatments on a regular basis.  Thankfully, I know God is sovereign and in control and has a plan for our lives—even when we mess up or don’t do what we’re supposed to. 

            In high school I had a relatively “healthy period”, thus giving me more reason to avoid my inhalers.  When I was 15 my Grandfather, who I was very close to, passed away from Melanoma skin cancer.  I was already in those teen years and asking some of those “why” questions—why are we here, why do bad things happen, what is my purpose in life?  After my Grandpa passed away, my Mom decided to take us to a nearby church.  I started attending regularly and one evening at a youth event, the Pastor closed in prayer that night by inviting those that weren’t sure if they had eternal life or not to come and talk to him afterwards—reinstating that you never know when your time is up and there could be a car accident on the way home.  I was still incredibly shy at that age, but had equated “getting saved” with “getting baptized” and went home and told my Mom I wanted to be baptized.  It wasn’t until later in continuing to go to church that I recognized I am a wretched sinner, alienated from God, and Jesus Christ lived the perfect life that I cannot, and died on the cross to bring me back into a right relationship with Him.  I am so thankful that He drew me to Himself those 10 years ago—especially looking back to all that has transpired in those 10 years—and all that He would call me to endure physically.

            I met my husband, Jordan, when we were 18 and we got married when we were 20.  Right about the time we were married and moved into town, my health started spiraling downhill.  At first we thought it was living in an apartment and in town—I had grown up out in the country away from the constant cars and trucks and mold that was probably in the older apartment complex.  Within a year of being married, we moved into a suburb of Tucson to try and get away from as much pollution as being in the middle of the city.  We have since added on to the house to get air-conditioning with a filtration system and got rid of all carpet to keep dust and other things down.  In spite of doing all this, my health has still gone downhill. 

            I am now up to over 20 surgeries and countless hospital stays.  I have breathing treatments and chest percussions that take an hour three times a day.  I am off and on IV antibiotics, oral antibiotics, and inhaled antibiotics in an effort to prevent and get rid of infections I do end up getting.  When I get a cold it can quickly become a bad infection that could lead to Pneumonia or more lung damage.  I now have Bronchiectasis, which is the hardening of your airways, which was caused by the numerous infections I had.  Some of the surgeries caused me to lose 80% of my hearing, but thankfully with a hearing aide I am able to hear pretty well.  My husband and I have also been unable to have children, we believe in large part because of everything my body is constantly fighting.  I also have some other pain that the doctors don’t know what’s causing it—it only goes away when I lie down.  My energy level is definitely not that of a normal 26 year old and I have to carefully watch what I plan in my days and try not to overdo it, as I can become sick so easily. 

            By God’s grace, this has not affected my ability to enjoy the life He has given me.  I must confess—there are days when I grow weary and tired of all the doctor visits, medicines, and having to say no to activities that I really would enjoy because of my health.  However, God has granted me incredible joy in the midst of this suffering.  I know He has an eternal home for me—that this life is but a vapor as He says in James—and that I will one day have a heavenly body that works perfectly!!  I would much rather suffer in this short lifetime and be with Jesus for all eternity, than have a great life here, and suffer eternally separated from God.  When I’m in the hospital or at doctor’s offices, or meet someone who finds out about all my physical suffering they eventually ask the question, “Why are you so happy when you are so sick?”  That is my favorite question to answer because I get to share the Gospel of Jesus Christ with them!

Without Christ, I would have no hope—but He is my hope, my Sustainer, my Comforter, and I know that He brings things into our lives so that we might bring Him glory.  If all my physical suffering can bring even one person to know the Lord, it will all be worth it!  We often don’t know or understand and as humans, we WANT to know WHY.  Often times God calls us to continue to trust Him and walk by faith—trusting that there is a Day coming when we will see Jesus face to face—and remembering that what He suffered for me is far greater than anything He has, is, or will call me to suffer in this life time.  By His grace, I continue to walk trusting in His plan for my life, trusting that He is good—even if my life doesn’t look like I thought it might.      

Rachelle Thomas 

Reading through that again Jordan and I had no idea what we would endure in December of 2010 or how I've recognized that whether or not someone gets saved because of my physical suffering is beside the point--what matters is glorifying God through my life and running hard after Him with all that I have and remembering that we serve an awesome God!  

**2015 update: I am now 31 years old and it has been 5 years since I wrote this "story of my life".  These last 5 years have indeed been the most challenging years of my life as I experienced three drug induced psychosis episodes, multiple seasons of severe depression, and many adverse reactions to antibiotics that I was previously able to take.  Some of these reactions have left me to struggle with vertigo, nausea, and other neurological issues like tremors.  Many basic tasks are extremely difficult, if not impossible on some days.  However, through these last 5 years, God has only strengthened my faith in Him and burned away more of that dross through those fiery trials.  Not only have we had incredible health challenges, including Jordan having a rare artery spasm heart attack in January of 2012, but we moved 8 times in 4 years, two of those moves being to Great Falls, MT and back to AZ.  I've learned recently about the "top life stressors" and you aren't supposed to do more than 3 of them in a year...well God's plan for our lives certainly involved more than 3 of those "major stressors" and He has drawn us ever closer to Himself and closer to each other as we have matured in our faith, hopefully to look more like Jesus as we are that much closer to seeing Him face to face.  I pray you will find this blog encouraging and most of all, I pray, as Joni Earekson Tada says, that you will find Jesus in your splash overs of hell on earth.  He rescued those who trust in Him from eternal hell, but our sufferings here on earth can be akin to "splash overs of hell".  Joni, and her husband Ken, decided one day as they were driving home from a chemotherapy treatment for stage 3 breast cancer (on top of chronic pain and 47 years of being a quadriplegic) that splash overs of heaven aren't the bright and sunny "easy breezy" days, but splash overs of heaven are finding Jesus in the midst of your hell.  Friend, whatever disastrous circumstances you may find yourself in today, please know that I am praying for you.  And that the God of the Bible is a God who hears the cries of the afflicted--He sees, and most of all He cares and He will wrap you up in His everlasting arms as we eagerly await THAT DAY when Jesus will come back or take us home and sorrow and sighing will flee away for all eternity for those who trust in Jesus.  May you run hard after Him and know Him better each day friends.  

"We count those blessed who endured. You have heard of the endurance of Job and have seen the outcome of the Lord’s dealings, that the Lord is full of compassion and is merciful." James 5:11

In His Mighty Grip,
Rachelle :) 

Jord and I in LA in March of 2010--when I met the Pastor from New Zealand and months before the December that would change our lives forever.