Friday, September 7, 2012

A Fellow PCD Pal Story :)

Life Before the Bucket: Our Story

I stumbled across Adrian's story on the PCD Foundation FB page. :) Our stories are often so similar and there is instant connection. So check it out and pass the word along!

In the Love of the Lamb,
Rachelle

Thursday, September 6, 2012

Gallbladder Going "Bye-Bye!" and Little Sis Getting Married!!

     I saw my GI doc this morning and had a long list of questions for him.  I absolutely LOVE him even though he is far away.  I learned a long time ago, especially for someone as "special and complicated" as me, good doctors are worth the trek.  He has a fantastic bedside manner, is knowledgeable, and not afraid of my extensive knowledge and desire to understand what's going on biologically and how it all works together,  which is critical to me.  In my opinion and experience, if a doctor doesn't have a good bedside manner and won't give you the time of day or REALLY listen to you, I don't care if they are "clinically" the best doctor in the world, if they don't listen to you, how can they truly get a feel for what's going on?  I know tests and data show up a lot of time, but in my personal experience, tests and data can be wrong.  When I was being diagnosed, Dr. Carson said that if I was a blind cilia sample, they would have said I had no issues.  It wasn't until they did further testing and put my symptoms together that we finally got a diagnosis...which we battled to get for 13 long years.  All this to say, when you are chronically ill and complicated, you have to find doctor's you can trust and are willing to go the "long road" with you to figure things out and think outside the box at times.  As Michele Manion of the PCD Foundation puts it, we have to find the doctors that will "look for Zebras in a world that looks for horses when they hear hoof beats."

     So, long story sort of short, your gallbladder stores bile and condenses it, and then when you eat, it squeezes bile out to help digest fatty food.  A normal functioning gallbladder will get rid of 35% of the bile...mine is only getting rid of 6%.  Not good.  He said it's inflamed inside and all the other tests I've had over the years would show up "normal" for the gallbladder.  In 2003 I went to multiple specialists trying to determine the cause of my debilitating pain, but no one came up with an answer.  The pain was eventually relegated to, "It is probably due to your possible endometriosis."  I even did Lupron for 5 months which put my body into chemically induced menopause to try and help the pain, to no avail but added in all the lovely menopausal side effects...talk about making marriage interesting!!  Laparoscopic surgery was never an option to "possibly diagnose endometriosis" because of the risk to my lungs.  So we finally have an answer to my pain and worsening symptoms of nausea and lots of other "fun" stuff over the last 15 years.  He said that my gallbladder would eventually stop working which would lead to emergency surgery, so we are opting to preempt that.  Obviously with any surgery there are risks, and those risks multiply when you have the lungs and compromised body I do.  

     I have a call into my lung doctor to talk about pre and post op things to do to minimize risk to my lungs.  In the past that has involved IV antibiotics the week before and the week after surgery.  With it being an abdominal surgery, I obviously won't be able to use my chest percussion vest for a little while.  I use it three times a day, four if I'm not feeling well like yesterday, and it is absolutely critical to help me clear the mucus out of my lungs.  What I'm thinking might happen is that I will have the surgery at Thunderbird hospital where the surgeon I'm being referred to works out of and then be hospitalized for a few days after surgery at Banner Good Sam where my lung doctor can oversee my lungs and I can get "manual" respiratory therapy there.  I still have to wait for the surgeon's office to call me and set up the pre-op consult to go over the anesthesia concerns, actual procedure, and plan of action for my lungs.  With my port still being clotted and not taken out yet, IV antibiotics in and of itself would mean another PICC line unless we opt to get my old port out and put a new one in.  My sinus infection has been getting worse over the last couple of days and is beginning to "feed" my lungs despite my aggressive rinsing and extra sets of treatments, exercise, and lots of rest.

     The next couple of weeks are likely going to be filled not only with orchestration of surgery preparation, but also last minute preparations for my little sister's wedding on the 22nd...and weddings in general bring lots of chaos the two weeks before.  I'm having to constantly shepherd my heart to remind myself that God was not surprised by any of this and His plans will prevail.  I'm struggling most with contentment with where I am at with my health.  All summer I talked about "when I get better" and back in June, September 22nd seemed a long way off.  At Jen's bridal shower in July I was sure that if I was "good" and rested over the next couple of months, I'd be healthy and good to go by this time and ready to peform my "Matron of honor big sister duties".  I know everyone wants me better, especially Jordan and the rest of my family, but God has chosen to prolong this trial for our good and His glory.  I recently purchased Steve Lawson's commentary on Job...life often doesn't make sense and we wonder why God does things the way He does, but at the end of the day we have to recognize we are not God and our finite minds will simply never be able to understand an infinite God.  All we can and are called to do is trust Him.  I've heard many a sermon and read multiple books about how it's much easier to obey God than to trust Him because in our brains we feel like we can actually DO something.  When you are called to simply wait and trust, I believe that's one of the hardest things to do because as humans, we all want to be working towards something or have some sort of direction to plan our lives in and when all we can do is wait and perservere, the illusion we cling to of being in control is shattered to pieces.  We recognize how little control we actually posess over the course of our lives and struggling with health is one of the key things God tends to use to remind us of our need of Him.  We can't make the cancer go away.  We can't heal the brain injury.  The side effects from the accident are there for life.  We did all we could, but we couldn't save him/her.  We are human and we are mortal and nothing brings that truth sailing home more than poor health. 

     I have to face the reality of PCD every day of my life.  Friends and family can escape for a time as time marches on, but for me, there is always something to bring me back to reality.  By His grace, and in His strength, Jordan and I are facing it head on, trusting Him with the outcome.  We are doing our part (for me that means RESTING and leaving laundry, dishes, etc etc undone and for Jord it means taking on "extra" duties I have always done for us) and praying as we move forward with each decision.  We are hopeful that removing my gallbladder will eradicate all the symptoms that have made me so miserable this summer.  At the same time, we have to prepare our hearts for the reality that it may not fix all the problems and 15% of the patients with my particular "gallbladder dysfunction" don't experience relief.  Normally percentages pay off, but in my case, rare and abnormal seems to be my specialty in life.  :)

    In the meantime, I will be working on a DVD for my little sister's wedding which I am super excited about!  I am looking forward to seeing her ride (yes ride...she's riding her horse!) down the aisle to marry the man of her dreams and our "special dance" we "choreographed" when I was in high school and danced at my Wedding, avoiding foods that I have learned make me absolutley miserable (note to self: eating garlic bread with lots of butter at 8:30 at night is NOT a good idea!), orchestrate appointments, pre-op labs, and all the above mentioned craziness, and still live each day to the fullest, placing one foot in front of the other, running the race He has called me to run...by His grace and in His strength!  

 Doing our dance at my wedding! :)


Living for Him and Loving Life,
Rachelle :)           

      

Tuesday, September 4, 2012

We Have one Answer!

Gallbladder!  Just got a call from the GI doc office and they said the hidascan showed poor gallbladder function and he recommends removal.  I see him on Thursday and will get more details, be able to ask questions, etc.  Pray for wisdom as any surgery for me gets more complicated with my lungs.  Have a friend here, so I will write more later! 
Rachelle :)

Saturday, September 1, 2012

Wading Through Tests and Appointments

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

     Re-cap of appointments:

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

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

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

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

For Prayer:

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

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

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

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

Last summer, we went up to South Mountain for
a date.  Was fun to just sit and look at the city--
we could even seen the planes take off and land
at the airport.  :)  Nothing like spending time with
my best friend!  
 
Resting In His Everlasting Arms,
Rachelle :) 
       


Monday, August 27, 2012

One Appointment Down Three to Go...This Week :)

"How are you?"  A question we all ask, probably every single day.  My response to that question right now: "Which body system, how much do you want to know, and how much time do you have??" I haven't been keeping up with updating the blog (sorry for those of you that can be blog junkies like me!) because I've got a lot going on as far as appointments, follow ups, orchestrating doctors/tests etc, and simply trying to do all I can do on a daily basis to help me be as "healthy" as I can be.  Food is really limited for me because it seems like everything makes me sick right now so trying to determine what sounds good and will help instead of hurt my tummy can be a challenge! Then trying to explain to my sweet hubby what the package that I want looks like and where it is and only buy that brand if it's on sale etc, turning errands over to him, and generally taking things off of my plate and adding to his "honey do list" minute by minute.  And learning that it really IS ok if the laundry sits in laundry baskets for days on end and never makes it to the closet before it gets worn again.  Driving is also limited between severe abdominal pains that only go away if I lay down, dizziness, nauseousness (and if I get into a coughing fit it's all over!), recovering from the fall on my left side and generally feeling physically miserable all the time.  Sometimes it's minute by minute so it's hard to know if I'll be OK to make a quick trip to the store or if I should ask Jordan or a friend from church for help or if whatever the "need" is can wait.  And I'm still learning the meaning of a "quick" trip to the store--it's just ENTIRELY against my nature to be in a grocery store and walk by things I know we will need soon and not get them.  Jordan gently reminded me when I called him from Fry's the other day saying, "Honey, I know I was only supposed to get eggs, but you need bagels, and in walking to the back of the store where the eggs are 'conveniently' located, I saw raspberries on sale, then I checked out the naturals section and they had some rice mixes that sound really good right now, and I got paper towels and paper plates..." to which he replied, "Uh, you are not supposed to be out shopping around right now!  You were supposed to go to the bank and CVS and head home."  Right.  Check.  I did it.  Again.  Realization sinks in hard as exhaustion sets in and I still have to get all this out of the truck when I get home and get the cold stuff in the fridge.  These are the moments I really get how well Jordan knows me and that he sets boundaries to help protect me from myself.  And in those moments I'm incredibly grateful for the husband God has blessed me with!!  :) 

Appointments.  My PCD pals, and many others can relate to weeks filled with appointments.  Not being able to drive puts an interesting twist on getting there and I have grown in entirely new ways in trusting God.  It definitely demands some creativity and orchestration.  This week I have four appointments, one of which is in Tucson.  Jordan drove me to his parent's house Sunday after church so his Mom could take me for my monthly ENT check up this morning.  I have a sinus infection--was not surprised by this because I haven't been doing the sinus rinse as diligently because it makes me gag and when I'm already nauseous that generally ends in throwing up for me so I have avoided them like the plague.  With all the other complex things my body is doing right now that we haven't been able to sort through, he wants me to do 3 sinus rinses a day instead of put me on antibiotics.  I have to do it at this point because typically once my sinuses give way to infection my lungs are not far behind.  

  My next appointment is the Endocrinoligist Wednesday morning.  Finally!  We have been waiting all summer for this one!  Having never been down this road, I'm not sure what to expect, but I'm thankful to finally be getting in to see him.  Jordan's parents are taking me to this one to help "wade through" information overload that always happens with a new doctor and what tests etc.
  I got some "helpful hints" from my ENT in how to communicate to a new doctor and express urgency/concern, but without "dumping" everything in on a first visit.  Pray that God will give him wisdom with what tests to order, that they would happen in a timely fashion, and that we could figure this one out sooner rather than later so Jordan can have some of his sanity back.  ;)  A super emotional "off" wife is not exactly what you dream up when you get married, but life happens and God's grace continues to be sufficient for each day!       

Thursday is a "two for one" kind of day.  I have the hidascan in the morning to test the gallbladder function and my Naturopath in the evening.  Pray for peace for the morning...I'm nervous about this test because it is going to "stress" the gallbladder out and a couple of my docs agree that a lot of my symptoms point to gallbladder so a test that can exacerbate symptoms that are already miserable is just not something I'm looking forward to.  I know God will carry me through and it may not be as bad as I'm imagining but in the mean time, by His grace I am taking thoughts captive, listening to sermons, and focusing on other things--like being spoiled at the "Thomas Resort".  Mom and Dad T. recently moved to a retirement type community that has "all the trimmings" so to speak.  :)  And of course we went shopping before my appointment today.  I also got to see my Grandma for a couple hours this evening which was a super special treat.  She is my Grandma that was married to my Papa that died when I was 15 and we are still super close.  :)

It's now been 84 days since I got sick this time around.  I look back and an entire summer turned out WAY different than I envisioned and we are pretty much into the fall.  Kids are back in school and new routines are being established and back in June and July I kept talking about "when I get better" envisioning that I'd be back to "normal" by the fall for sure.  As always, God has a way of sanctifying us that we don't always like.  Although there are times when I "kick at the goads" so to speak, by His grace and through His Spirit, I am growing in trusting Him even more and I am so much closer to Him now than I was back in June.  Jordan has grown tremendously and so have people all around me.  It's so neat to see God provide for all the little details to come together at just the right time for just the right person to drive me to an appointment or bring me a meal, send me a text, or call me or stop by right when I needed it the most.  I am much more limited than I would like to be right now, but in that limitation I am reminded that I am dependent.  Dependent on the One who made me--we all are--and yet we go through seasons where we forget.  In our pride we believe "Oh I've got this.  Ears, lungs, sinuses...I can suffer well for the glory of God."  When I write those words it displays the ugliness of my own heart.  In His gracious plan, God chose to humble me--in this season He chose to "throw in" lots of other organs and systems that just don't want to work correctly right now.  I joked with the MA who checked me in and took my temperature today--"Yay!  My temp is back to baseline--between that and my heart, I have two things that are at baseline for me!."  As I was reminded by our worship leader, Josh Kellso on Sunday before we sang the song, Jesus, I my Cross Have Taken, as children of God, we truly have no reason to complain--Jesus bore God's wrath on the cross for my sins and there is a DAY coming that will be glorious beyond belief, and this weak frail body will be transformed as I meet my Savior face to face...when I am finally and truly HOME. 

Resting in His Everlasting Arms,
Rachelle :)  

Our "evening out" from several weeks ago
 that turned into going to Meri and Seth's condo 
instead of Fleming's. We still had fun even though I 
was in pain!
 
        

Tuesday, August 21, 2012

Health Gone Crazy ;)

Well lets just say it's been an interesting week...and it's not even Wednesday yet!  I'm going to try to condense it for now and will explain more later.

  Basically, I'm getting worse instead of better.  My GI pain, nausea, vomiting etc are all increasing and making me exhausted, combined with everything else that is going on (ie: liver, thyroid, lungs, sinuses, ears, yeast infections etc etc etc to name a few).  Sunday morning at church, instead of listening to the Communion message, I was in the bathroom throwing up.  Right now, I get so weak so easily that Jordan had to take me home.  I spent the rest of the day in bed and yesterday was not much different.  The good thing is that I downloaded the YouTube app to our PS3 so I have been watching the Resolved 2012 messages on my nice big TV...there is a plus to your hubby loving electronics!  ;)  Although the last two days have been filled with frustrating phone calls that lead to more hours (yes, literally HOURS) spent on the phone, still with no answer in sight, I would go right back to watching a sermon and my focus was immediately shifted to where it should be and I was thinking of things the way I should be--in light of eternity.  These days are difficult, hard, and long, but THAT DAY is going to be glorious and THOSE days are going to last for eternity!

For prayer:

1) That we could speed up the process and get into tests and doctors sooner rather than later so we can get to the bottom of some things and start moving in a direction of treatment and resolution to some problems, instead of continuing to spiral downward. 

2) Patience and grace for Jord and I and the rest of my friends and family that are close and see the pain and difficulty and the long days and the misery.  God's mercies are new every morning and His grace is sufficient, but we are battle weary and covet your prayers!!

3) Praise for NC doctors!  I called them and they helped me sort through the priorities and are going to call my GI doc here and express the urgency and they helped point me in the right direction again.  

Some of you know that the NC docs recommended I go to an ER if my symptoms continue to worsen and I get no response from doctors in a timely fashion.  Jordan and I have talked to one of the elders at our church who is also in the medical field here in the Valley (cannot express how thankful I am for him!!) and with some resolution from one of my doctors ordering a thyroid test and my symptoms getting a tiny bit better (could be the fact that I'm actually listening to my hubby and only doing something for 10 minutes every hour--or big trouble for me!) we decided the risk of going to ER and exposing myself to more germs and things I really do NOT need right now--not only in ER but in the hospital--is not worth the risk at this point.  We may have to down the road, but for now I'm staying home, resting, resting, resting, resting some more, and so thankful for my church family continuing to bring us meals, pray for us, call, text, email, encourage etc and my family and friends rallying around me as well--we couldn't get through this valley without you!!!  I'll keep you all posted as I can! 

Keeping my Eyes Fixed on Him,
Rachelle :)    

Thursday, August 16, 2012

Update on Appointments :)

     It's been a crazy week...after my fall I went from having one doctor's appointment to three.  I just got back from an appointment with my PCP and x-rays of my left hip, back, and shoulder.  They said that all came back good.  They weren't expecting anything to be broken, but I have a super high pain tolerance so to be on the safe side and document everything we did the x-rays. 

   I see my lung doctor tomorrow morning at 10.  I'm not expecting anything abnormal on that front as that all seems to be basically under control for me.  Coming up, I see my ENT (ear, nose, throat) doctor, Naturopath/Chiropractor (who I will be seeing much more frequently because of the fall), the second test for the gallbladder that will take 2 1/2 hours, a first appointment with my endocrinologist to start figuring out the Thyroid stuff, fasting blood work for GYN hormone tests, and I should schedule some other things like the dentist that I am long over due for and I would LOVE to get my port out--every time I try to lay on my stomach or a seat belt hits it wrong it reminds me that it can come out--but it is simply going to have to wait at this point.  All these appointments (and probably some more as tests get done and follow-ups are needed, or I come out of appointments with a zillion tests to do before the next appointment) are before the end of August. 

     Appointments pretty much take up my entire day--or leave little room for anything else.  Yesterday I tried doing a few "simple" things like unloading the dishwasher, cleaning up the kitchen counters, putting some BBQ chicken in the crock-pot and a quick trip to CVS to get some new pill containers after a morning appointment and let's just say it led to a major M&M moment.  So today, Jordan was careful to ask me about my day and it's limited to 3 things:  Appointment (which took way longer than I anticipated!), browning the ground turkey I got out two days ago, and organizing our room--in 10 minutes increments with no more than 10 minutes every hour and a nap is a must.  Sounds silly to have to spell it out that much, but my "just one more thing" bug kicks in and the next thing you know the entire kitchen is clean, organized, and a meal is on the table, but Jord comes home to an exhausted, super-emotional wife. 

    So thankful for a hubby that loves me enough to protect me from myself and takes his role as head of the house and protector of me seriously!  Even though we don't like it, we ALL need to be told "No" sometimes, and learn to tell ourselves "No" as well.  :)

    Feel like I have tons more to update, but typing hurts my wrist and arm so I'm gonna have to call it quits for now and go take that nap.  ;)  Thanks for praying!!

In His Mighty Grip,
Rachelle :)

I don't wear the sling all the time,
but when I go out I do, mostly to 
keep people from accidentally touching
me on that side.  :)  And it helps me remember
not to use it too much and it helps support
my arm.  :)  
      

Monday, August 13, 2012

Praise and Thanks :)

I woke up and wasn't as sore as I thought I would be, praise the Lord!  Bruises starting to show up and have an appointment with my Naturopath who is also a Chiropractor on Wednesday and need to make an appointment with my PCP (primary care physician) as well.  Claims guy called for the store and they take up to 30 days to do an investigation etc.  On the upside, I've had lots of experience with one handedness...this time its my left hand instead of my right, so I don't write like I am back in Kindergarten like I did after I injured my right wrist and had two surgeries on it....yeah and was in chemically induced menopause (yep, hotflashes and all!) at the same time that I couldn't use my right hand...come to think of it, Jordan has had a super emotional wife lots of times in our marriage now--poor guy!!  The good thing that comes with experience...I know all the "tricks" and they are fast coming back to me--like using a sling to keep my wrist elevated when I'm up and around or using my legs to hold pill bottles to open, or my good arm and the washing machine to balance the laundry basket.  You get very creative!  :)

Thanks for praying for us!  Jordan has been not feeling the best and for the first time in my life these words came out of his mouth: "You're stressing me out!"  So prayer would definitely be appreciated...especially for Jordan...lots of time the caregivers get overlooked...but that's a whole other post!

Off to bed!
Rachelle :)

Sunday, August 12, 2012

Icing on the Cake

We went to a store to grab a couple of things and I turned to follow my sister-in-law to look at something and there was water on the floor and my flip-flops hit it and the next thing I know I'm on the floor. I landed with my left wrist under my left hip. Not broken but wrist and entire left side of body hurts.  Please pray for grace and strength and trust, especially for the morning and during my treatments....vibrating when hurting is not fun but I have to do it for my lungs. Thx!!

Rachelle...typing with one hand so wont be writing as much ;)

More Heart Shepherding :)

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

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

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

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

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

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

Learning to Trust Him More!
Rachelle :)                  

Thursday, August 9, 2012

Lemons, Blueberries, and Naturopath appointment

     I had a good appointment with my Naturopath this morning.  He is focusing on getting my gut/intestines under control and I'm taking lots of probiotics but I need a heavier PREbiotic so it will help my body utilize the probiotic.  Also, he said clinically, he has seen the Netipot works better (for whatever reason!) than the "squeeze bottle" sinus rinse, so I'll be experimenting.  He also gave me another tip for when my sinuses "really kill me"...boil a pot of water and add several drops of tea tree oil, lemon oil, and eucalyptus oil and breathe it in and he said it should help me a lot so I'll let you know how it goes!  :)

     Lemons and Blueberries you may be wondering....let's just say we had dinner with my sweet friend Meridith and her new hubby, Seth on Tuesday night.  We had to scratch the plans to use our Fleming's gift card we've had for two years because I was in debilitating pain and couldn't sit up so we got Pei Wei instead and went back to their condo so I could lay on the couch and be somewhat comfortable.  We were talking about how I am learning the balance of how to answer the question "How are you feeling?"  Some people ask expecting nothing more than "Hanging in there" while others want all the details.  And of course how to shepherd my heart when I get the, "Well you LOOK great" comment as a response to whatever I tell them.  Jordan started laughing and said he had the perfect analogy: "You're like a used car...when I married you, you looked healthy, but as soon as we got married, your alternator went out, you needed a new battery, you threw a rod...."  He couldn't finish because we were dying laughing...I responded with, "You SERIOUSLY just compared me to a used car???"  :)  Seth piped in with, "You're a lemon!  Did you know there is a "Lemon Law" in Texas?  Basically, if you buy a used car you have 30 days to take it back and tell them it's a lemon."  To which Jordan replied, "I think 7 years is the 'marriage lemon law', I've got three months to bail!"   Talk about PCD humor.  ;)  There are times when if you don't crack jokes and just laugh you will be depressed or go crazy or any combination thereof.  I'm telling you, God doesn't make any mistakes when He brings you together with your spouse...Jordan LOVES to make people laugh...and he knows me so well that (most of the time!) he can get me from sobbing to laughing in two seconds.  So where does the blueberry fall into the mix?  Jordan doesn't like to spend money on clothes so he had two dress shirts (until Uncle Mike went through his closet and literally outfitted him for the next two years!!!!  Such a sweet gift and perfect timing!) and one of them is blue and he likes it better than his red one.  We were looking at Seth and Meri's wedding and reception pictures.  They had a small ceremony in Sedona and then a big reception a few weeks later after their honeymoon.  Jordan wore the same blue shirt to both.  Jordan was giving us his infamous "running commentary" on the pictures and referred to himself as "the big blueberry."  So it was a "fruity" kind of night with the Garrison's.  ;) 

     Although I was in pain most of the time and we didn't stay late, it was fun to get out of the house and lay on their couch and laugh and joke and have a good time--especially considering the fact that Meri is one of my closest friends.  She is in nursing school right now which I am super excited about.  It's the perfect job for her--she loves Jesus and loves other people immensely and has a servant's heart.  In a way, God is giving me another "personal nurse" that I can call at the drop of a hat and I know she will be there in a second if she is able.  She met me at the ER when I coughed up blood on what seems that long ago June day that started this whole mess when Jordan couldn't get off of work and my family was 100 miles away in Tucson.  Jordan is like her big brother--their families met at church in Tucson when she was 7 and he was 14.  I was blessed to "marry" into the friendship almost 8 years ago.  We have helped each other walk through some deep valleys and our friendship is one that is a Christ-centered deep friendship--I can't count how many times we have called each other in tears, "Please pray for me...my heart is struggling with...."  Meri is one of those special friends that although life may get busy and we may not see each other for a couple months or talk on the phone much in between, but we are always able to pick back up right where we left off and I know she is praying for me regularly and I am privileged to do the same for her.  I've given her lots of opportunities to practice her nursing skills, even before she knew she wanted to be a nurse!  :)  When I had one of my wrist surgeries before we moved to Phoenix, she came to Tucson when she was in high school (she was home schooled so she had the freedom to do that!) and she stayed with me for several days while I was recovering and cooked and cleaned and freed up my family and church to serve us in other ways.  :)  I know you know how much I treasure our friendship and I'm so incredibly grateful it's an eternal one and we can continue to encourage and exhort one another until that Day when Christ comes back or takes us home, where we will worship the Savior together forever!  Love you much my sweet friend!

 Meri helping me recuperate :)

  Meris' wedding!  She was able to wear my dress! :)
(With a few alterations since she's just *a tad*
taller than me lol)  :)        

     Meri is one of those friends that understands all the medical lingo that comes with the territory of PCD.  Some people with PCD (or other health issues for that matter!) don't like to talk about their health much, while others (like me!) are ready and willing to share anything and everything, and still others are some sort of combination in between those two extremes.  I was talking to Jamie, who drove me to my appointment this morning about how God is growing me in being discerning with who I tell what and when.  Being discerning and recognizing how to answer honestly without all the details can be challenging for me for multiple reasons.

     1) I come from a family with a heavy nursing background.  Both of my Aunt's are nurses and have been for as long as I can remember and my Mom was a semester away from getting her LPN (entry level nursing) when she found out she was pregnant with my sister (so glad we got you instead of another nurse Jen!!!)  Before I quit school so I could work enough hours at Bank of America to get health insurance and Jordan and I could get married, I was accepted into the college of Nursing at the University of Arizona and have two years of college under my belt which included all those "weed out the pre-med students" science classes.  My first Biology test was the first time I got a D in pretty much anything...was thankful for that bell-shaped curve!  Living with a chronic illness on top of that body of knowledge makes me as comfortable with "medical lingo" as I am with any other "normal" topic of conversation.  I forget that people don't know what Situs Inversus (organs on opposite side of the body), Tympanomastoidectomies (reconstructive ear surgery that removes part of the mastoid bone..I've had one on each ear), myocardial infarction (heart attack), hypertonic saline (saltier than body fluid), isotonic saline (same saltiness as body fluid), heparin (blood thinner and used with my home IV's to prevent my port-a-cath from clotting), etc etc means in layman's terms.  When I talk to someone new about PCD I usually end up asking them if they have any medical background because then I know if I need to bring the Ciliary function down to "stair stepper vs. washing machine" or if I can talk more "scientifically".  

     2) I am passionate about life in general and Jesus, PCD, and all the little details that God orchestrates every day to provide His loving care for me in particular.  Anyone who has known me for any length of time will notice how fast I talk.  When I get excited I talk even faster...throw medical lingo in there and I can't count how many times even Jordan and my family has had to interrupt me with, "Whoa! Whoa! Whoa!  Slow down and start over...I didn't understand one word you just said."  I'll slow down but as I talk about how God provided this awesome doctor, or an unexpected check in the mail from a friend to help with medical expenses, or how He provided a ride to the doctor in the nick of time and on a morning when I never would have been able to make it myself or any other combination of "amazing " Providences of God I love to share...like those moments when I am wondering how I'm ever going to get through the day and I'm emotional and struggling to take my thoughts captive and someone sends me a text or an email with a verse or telling me they are praying for me, I get excited and slowly speed right back up. :) 

     3) Living with an "invisible illness" can be very difficult and my fear of man and pride gets the best of me and I feel like I have to explain or justify why I'm exhausted and can barely move right now but two hours ago I was able to go on a walk with Jordan and make him breakfast.  This is an every day battle right now and at times an intense minute by minute battle.  As I learn to manage my "new normal" I will appear to "be getting better" but the reality is that I'm learning to say no to going out to lunch or making dinner or finishing putting away that load of laundry or cleaning the bathroom in sections and resting when I need to rest.  As we delve deeper into the GI and Thyroid issues and more invasive tests are needed (like the probable Endoscopy and possible Colonscopy) or the Gallbladder function test or the Thyroid uptake scan it all places stress on my body and that is just the beginning of figuring out what's going on.  Not to mention staying on top of my ear, sinus, and lung infections that are ever present and lurking in the background ready to strike if I'm "compromised" in any way.  

     All that to say, it's a constant juggling act and right now no two hours are alike.  One hour I will have energy to drive to see Jordan for an hour at the dealership and then all of a sudden I have debilitating pain and have to "wait it out" on a couch in the back room.  Other times I can "do something" for three or four hours until I'm just plain tired.  If you don't know me well, you would never know if I'm in severe pain and have zero energy because by His grace, you get the same smile, enthusiasm, and passion for life that you get if I'm "up to baseline." I'll ask questions to learn about you and your family or your desire to be married or your struggle with sin or the difficult times you are going through.  My deepest hearts desire is to demonstrate to you that I care about YOU and your soul...number one that you are right with God through Jesus Christ (but I'm learning not to "beat the dead horse" so to speak if you are not interested although you can bet your bottom dollar you will be on my prayer list and prayed for regularly!!) and number two that you walk away from whatever interaction we may have--whether it was saying hello to a cashier in the grocery store and REALLY listening when I asked how his/her day was or talking to one of the sales guys at the dealership, or the lady who drew my blood, or the Medical Assistant who takes my blood pressure and asks "What are you in for today?" or the receptionist who is obviously having a bad day--knowing that I truly care about who you are and that there IS somebody in this world who cares about you!  I just finished listening to another phenomenal Resolved message by Al Mohler called, Prove it: Knowing and Doing God's Will" from 2011.  He talks about how if you really break it down, there is surprisingly little left to the imagination when it comes to "finding God's will for your life."  He has given us His Word as revealed through the Bible and although it doesn't tell us specifically who to marry or what job to have the Bible DOES tell us what kind of person we are to marry and that no matter what we do we are to be obedient to Him, serve in His church, live out the "one anothers" and do it ALL for His glory.  As a Christian, every one of us was born with a special unique purpose for His Kingdom work that ONLY we can fulfill in this point in time in redemptive history.  WOW.  Talk about being encouraged through my suffering.  It's not easy.  Some days are harder than others--but His plans and purposes for my life will prevail...and THAT is all that matters.  :) 

All the Glory to Him!
Rachelle :)                       

Tuesday, August 7, 2012

Thyroid Doc Scheduled

I'm making some progress on that long list and remembering to rest in between...sort of.  ;)  Been on the phone a lot today but that comes with the territory! 

  My Thyroid doctor's appointment is scheduled for August 28th, at 10:00AM.  Pray for wisdom, that I would be prepared with the records they need etc.  And as always with new territory, that I would trust the Lord for each day and not worry about the future that only He can see.  :)  

Off to my list! (And at the top is time in God's word...hasn't happened yet and it is vital to my emotional control right now!!!)  ;)
Rachelle :)  

Yep...I'm a "mark it up" kind of girl ;)  A result of
a quote by Charles Spurgeon being on my very 
first Pastor's door: "A Bible that is falling apart
usually belongs to a person that is not." 

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

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


I learned young!
 


 Recovering from one of my Tympanomastoidectomies 
(AKA ear surgery)  :) 

 Mom and me at a horse show with Goldy and Red
who have both passed on...God gave us a lot of 
great memories with those two incredibly special 
horses!!!
 
 We had family shirts made with 
"I'm the Mom, I'm the Dad and 
Kid #1 through #5" so everyone could
keep us straight at the horse shows :)
This is one of my step-brothers (we 
are all one big happy family though!) Sheldon,
and my Daddy with my Momma and her 
beautiful smile. :)

 Mom and I in Washington, D.C. for the 
8th grade trip.  She taught at Marana Middle
School for 13 years so we all got to go to 
D.C. with her and Jackie.  :) And our 
awesome bus drivers, Dale and Ted...I haven't
forgotten you and never will!!!  :)

 Mom, Me, Justin, and Jenny at one of 
Aunt Dawn's pool parties.  :) 

 Mom, Me and Jen...was just Mom and
Me, but Jen dove her way into the 
picture which is why Mom and I are 
laughing hysterically!  :)

 Mom and Gold, Jen and Dreamer, and Me and Buddy
in May of 2010...we did a "horsey photo shoot" with 
my good (and very talented friend!) Brad Gill.  :) 

Fun Family picture from a couple
years ago minus the boys.  You can't see it
but it was my bright idea to have us go youngest
to oldest with Jen, Jus, and Me, then Jordan
and Dad after me...I didn't think through the weight
issue and who had to hold who up on the slide!
Aunt Anita is out of the shot holding Jen up so we don't all go 
crashing down...Justin and Jordan are doing their best to hold us up 
while Mom and Dad are just cracking up as we slowly slide down 
the slide as Uncle Frederick snaps the pictures.  :)  

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

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

 Walking at the Renassaince Festival with 
our dear friends, Jeremy and Jenn several
years ago.  :) 

DA BEARS! Christmas at Great Grandpa's :)

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