In the Love of the Lamb,
Rachelle :)
My facebook post below:
Saturday, June 30, 2012
The "Control" Issue :)
I don't have much time so I'm copying my facebook status here. I'm finishing up my treatments and headed back up to the conference on the 3rd floor. Will write more later...so many emotions though! Talking to multiple women around my age and we can talk about this drug and that drug and what color is your mucus and what are you growing and we don't have to explain anything...we all not only understand with a head knowledge, we all know what it feels like to struggle to breathe, to have side effects from drugs, to wonder not only, CAN I get pregnant, but SHOULD I get pregnant...I didn't sleep well last night between my lower back pain (coughed it out again so pray for the plane ride home!), chest tightness, my right wrist is sore again because I haven't been doing exercises and been using it more because my PICC line is in my left arm and physically I am just spent. Add all the emotions in there and you get the picture. Talking to everyone and then starting to process, thyroid, liver, gallbladder (possible explanation to my "pains" all these years...more later on that one!), enzymes, not absorbing food correctly, etc can get overwhelming and I was struck with the mortality of this disease. I think for years I've not really truly processed the fact that there are serious complications, (took that more seriously when my 32 year old friend I had just met 6 months prior with PCD suddenly died from drug interactions trying to deal with an infection), and even after my whole Prednisone/Levaquin Psychosis not sleeping for 5 days almost dying bit, it doesn't seem real. Suddenly, seeing all these people, hearing similar stories (every single person at our table had collapsed lungs at birth and spent at least 10 days in NICU with no explanation to parents), and "unsmasking the faces of PCD" as the motto of the foundation goes it all just hit me. Then my Bio-Dad who I have really recently started to truly restore a relationship with has to go in for an emergency appendectomy. The facade of the "control" I had over my disease (it was in its nice little compartment of "this is just my life and the way it has to be") and God continuing to show me that I have no control when others suffer (and in reality I don't have control when I suffer even though its so much easier for me to suffer than watch others I love so much suffer!), is throwing me on Him..."Humble yourselves under the mighty hand of God, casting all your cares on Him for He cares for you." One of the Peter's 5 something (7 I think...) comes to my mind and so incredibly thankful I can shepherd my heart towards the gospel of Jesus Christ knowing He IS in control and go to places like Revelation 4 and 5 (so thankful for this study smallgroup!!!!) and Romans 8 and be reminded of His unsurpassed care, love, mercy, compassion and that I am His adopted child. I long for others around me who suffer without Him to know Him and know the peace that I have. I can't make that happen and I KNOW that in my head, but so much harder to "let go" and trust the One who is TRULY in control. Pray for my heart friends...I long to trust Him and glorify Him in all that I do but I'm struggling right now and all these emotions literally broadsided me last night and just processing this morning and even as I write. Sarah, I continually go back to what we talked about...no matter what happens, may God be glorified best in each situation and He knows what that looks like and it doesn't always make sense to us this side of heaven, but praise God, we know He knows whats best as His thoughts and His ways are higher than ours. (Isaiah 55)
In the Love of the Lamb,
Rachelle :)
My facebook post below:
In the Love of the Lamb,
Rachelle :)
My facebook post below:
Friday, June 29, 2012
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 :)
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 :)
Thursday, June 28, 2012
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 :)
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 :)
Wednesday, June 27, 2012
We Made it!
Whew! What a trip....lets just say I don't fly very often and I booked the tickets and only left us 30 minutes between connecting flights in Atlanta, GA...which I NOW know is the world's busiest airport....all I can say is praise God for the wheelchair need or we never would have made it on our flight in Phx or Atlanta! So here's my new travel tip: Request a wheelchair and you (and whoever is with you helping you!) gets to go to the front of every line....we saved probably over an hour in Phx and made our connecting flight instead of missing it in Atlanta because of that!! Praise the Lord for His sovereign care over our lives!!!
It feels like God was answering prayers all day long...because of the handicap upgraded seats we got to sit in the very front which meant tons of leg (and stretching!) room on the 3hr 45 min flight to Atlanta and then right behind first class on the flight from Atlanta to Raleigh. I also found my new favorite airline: Delta. Not being a frequent flyer, I just booked tickets through Expedia...and did Delta ever impress me with how they treated Mom and I and went above and beyond to accommodate me! It was so phenomenal they now have a customer for life! All my "escorts" were friendly and super helpful...and of course I had a "captive"audience so most of them heard something about Christ. I think the funniest one was Alan who was escorting me (along with 2 others to protect us and make sure we got through the masses of people!!) through the craziness called the Atlanta airport that is a hub for everywhere and it is said that you can get anywhere and that the Atlanta airport has been called the "gateway to heaven, so if you want to go to heaven just go through Atlanta." I replied, "Well, I have Jesus Christ so I know I'm going to heaven!" Silence. :) I forget what I started the conversation back up with but I have his card to email about his wonderful service (after all he is the reason we made our flight with 10 minutes to spare!) and I will be praying that one day he and any others who God allowed my life to intersect with, for however brief a time, may come to know Jesus Christ as their Savior.
My favorite person I met today is Joseph. (great Bible name, huh?!) He has been in the states from Nigeria (Tim and Ashley, your practically neighbors to his family I heard!) for only 6 months and wants to go to school to be a lab tech. I told him he'd like me, because I have good veins and Mom said I love good lab techs! I had to start my IV there so he watched that and as we talked I found out he left his wife and 10 month old son in Nigeria to come to the states. I told him I would be praying for him and I would ask that you join me in praying for him and his precious family as well! What perspective...I am missing sleeping next to Jordan for 4 days and although he talks to his wife everyday he won't even get to begin to think about seeing her until "next year sometime." By then his son will be 2. Made me think of all the sacrifices our Military families make to keep our freedoms safe!
Mom and I just got some food from a "local favorite" restaurant here and it smells wonderful so I'm going to go and eat that but thanks for praying! We will be at UNC tomorrow morning at 8AM (5AM AZ time) and be in and out of doctors stuff most of the day. I felt great most of the trip until we got to the rental car place and then I got "the pains" as I call them. The only way they go away is if I lay down so I was very thankful to be able to lay back in the car and then get to the hotel and stretch out on a bed. God has and continues to sustain me every step of the way! To Him be the glory great things He has done....
Rachelle :)
It feels like God was answering prayers all day long...because of the handicap upgraded seats we got to sit in the very front which meant tons of leg (and stretching!) room on the 3hr 45 min flight to Atlanta and then right behind first class on the flight from Atlanta to Raleigh. I also found my new favorite airline: Delta. Not being a frequent flyer, I just booked tickets through Expedia...and did Delta ever impress me with how they treated Mom and I and went above and beyond to accommodate me! It was so phenomenal they now have a customer for life! All my "escorts" were friendly and super helpful...and of course I had a "captive"audience so most of them heard something about Christ. I think the funniest one was Alan who was escorting me (along with 2 others to protect us and make sure we got through the masses of people!!) through the craziness called the Atlanta airport that is a hub for everywhere and it is said that you can get anywhere and that the Atlanta airport has been called the "gateway to heaven, so if you want to go to heaven just go through Atlanta." I replied, "Well, I have Jesus Christ so I know I'm going to heaven!" Silence. :) I forget what I started the conversation back up with but I have his card to email about his wonderful service (after all he is the reason we made our flight with 10 minutes to spare!) and I will be praying that one day he and any others who God allowed my life to intersect with, for however brief a time, may come to know Jesus Christ as their Savior.
My favorite person I met today is Joseph. (great Bible name, huh?!) He has been in the states from Nigeria (Tim and Ashley, your practically neighbors to his family I heard!) for only 6 months and wants to go to school to be a lab tech. I told him he'd like me, because I have good veins and Mom said I love good lab techs! I had to start my IV there so he watched that and as we talked I found out he left his wife and 10 month old son in Nigeria to come to the states. I told him I would be praying for him and I would ask that you join me in praying for him and his precious family as well! What perspective...I am missing sleeping next to Jordan for 4 days and although he talks to his wife everyday he won't even get to begin to think about seeing her until "next year sometime." By then his son will be 2. Made me think of all the sacrifices our Military families make to keep our freedoms safe!
Mom and I just got some food from a "local favorite" restaurant here and it smells wonderful so I'm going to go and eat that but thanks for praying! We will be at UNC tomorrow morning at 8AM (5AM AZ time) and be in and out of doctors stuff most of the day. I felt great most of the trip until we got to the rental car place and then I got "the pains" as I call them. The only way they go away is if I lay down so I was very thankful to be able to lay back in the car and then get to the hotel and stretch out on a bed. God has and continues to sustain me every step of the way! To Him be the glory great things He has done....
Rachelle :)
Tuesday, June 26, 2012
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 :)
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 :)
Monday, June 25, 2012
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.
**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 :)
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. |
It's Official: I have a blog! :)
I have been talking about starting a blog for awhile and it has finally come to pass. :) With the recent upheaval in my health and trying to remember who I've told what, I think this is the easiest way to say it once and anyone that wants the details (girls like details...guys like lists!) can get the details and the guys can skim the details for the list they are looking for. :) As Jordan fondly says, "Rachelle knows how to make a short story long". I get so excited about all the details that God weaves into our lives that I can go on 50 tangents in one conversation and never get back to the original topic because I want everyone to see how God orchestrates all the little details of our lives to glorify Him and work out His redemptive plan in our lives.
That being said, my purpose with this blog is multifaceted. I love to write and have for a long time. I love to write and talk about my Savior. When I do something, the "over achiever" in me (yep it's still there even after being out of high school for 10 years!!!) likes to go "all out". Many people have asked me over the years if I've thought about writing about my experiences with my chronic lung disease so this is the beginning of that adventure. I'm going to start writing on this blog and pray for God to guide and direct my story and see where He takes it. My dream would be to write a book one day as I love to encourage others towards the Gospel of Jesus Christ and that seems to encapsulate everything my heart desires, but I also want to be wise with the limited energy and time the Lord has given me so I think this is a great way to "test the waters" and see where He takes it. :)
From the start I want to say feel free to pass anything on to anyone you feel it might encourage as that is my passion and one of the awesome benefits of being in His body. Feel free to ask me any questions--I am very open (sometimes too open!) about my disease or any other things in my life, especially if I know the Lord can use it to help others run the race He has called them to run.
Thanks for coming alongside Jordan and I and helping us run our race as we all run together to glorify Him in all that we do!
Rachelle (and Jordan) :)
That being said, my purpose with this blog is multifaceted. I love to write and have for a long time. I love to write and talk about my Savior. When I do something, the "over achiever" in me (yep it's still there even after being out of high school for 10 years!!!) likes to go "all out". Many people have asked me over the years if I've thought about writing about my experiences with my chronic lung disease so this is the beginning of that adventure. I'm going to start writing on this blog and pray for God to guide and direct my story and see where He takes it. My dream would be to write a book one day as I love to encourage others towards the Gospel of Jesus Christ and that seems to encapsulate everything my heart desires, but I also want to be wise with the limited energy and time the Lord has given me so I think this is a great way to "test the waters" and see where He takes it. :)
From the start I want to say feel free to pass anything on to anyone you feel it might encourage as that is my passion and one of the awesome benefits of being in His body. Feel free to ask me any questions--I am very open (sometimes too open!) about my disease or any other things in my life, especially if I know the Lord can use it to help others run the race He has called them to run.
Thanks for coming alongside Jordan and I and helping us run our race as we all run together to glorify Him in all that we do!
Rachelle (and Jordan) :)
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