BAHA Update and Musings About Suffering

     So over the weekend, if you couldn't tell from my emails, facebook posts, and blog, I was not feeling well, exhausted, frustrated, and desperately looking for a doctor that would help and at times was in a desperate state of mind.  I imagine I felt like the woman who bled for 12 years felt when she heard of Jesus and scripture notes that "she had spent all her savings on a multitude of doctors and they had only taken her money and made her worse."  Jesus could have just healed her physical affliction privately but He stops the crowd when "He felt power go out from Him and asks, 'Who touched Me?'"  He knew who touched Him as He was omniscient, but He wanted her to come forward and not only heal her physically, but by new faith in Him, heal her sin cursed soul--and all at no cost to her, but great cost to Himself.  There is a lot more there we can meditate on, but I can understand her desperation to be healed--her desire to be able to participate in activities that she couldn't because of her unclean affliction--a feeling I know and often have to battle when I know what I SHOULD do for my health, but what I WANT to do is vastly different, and often times I lose that fleshly battle until God gets my attention in a big way again.  

     In my research on Saturday night, I found an otoneurologist in Phoenix and asked for prayer that he would take my insurance and was accepting new patients.  It turns out he accepts new patients and as I talked with his nurse, I was almost in tears hearing about how he incorporates nutrition and supplements into his practice--something that not all doctors are specifically open to, and some are adamantly opposed to.  I quickly scheduled an appointment for the first available even though I found out at the end of the call that he doesn't take insurance period and charges $360/hr and the first appointment is two hours long.  I was so desperate and emotional that I was blind to the unfortunate fact of the matter--that's a LOT of money for one doctor and with other financial obligations we have right now, we really don't have the money.  

     On the upside, my new ENT in Tucson got me in right away yesterday morning, and although it was definitely not the way I wanted to spend my birthday, I got the antibiotics I needed and he said I do need to find either an otologist or otoneurologist to manage the BAHA in the future.  I cancelled the appointment I had made with the guy in Phoenix for now, and started looking online for doctors in Tucson and quickly became excited as I found a doctor in Tucson that looked like he would fit the bill...only to find out that he doesn't take my insurance.  

     These are the days I have to remind myself over and over again that God is sovereign--He is good, wise, and merciful and because of His death on the cross, my suffering is not in vain.  He knows which doctors I need to see and will provide the way to see them. 

     The swelling is going down around the BAHA so hopefully I will be able to wear my hearing aide again soon.  I am super tired, but resting lots and in my resting today I found some AMAZING videos on Youtube done by Joni Earickson Tada...she became a quadriplegic at 17 right after she graduated high school and had her bags packed to go to college and become a physical therapist.  She joked with Larry King on Larry King Live, "I ended up on the wrong end of that one!"  47 years later, she is an amazing testimony of the grace of Jesus Christ in the midst of severe, chronic suffering.  Not only has she endured the quadriplegia, but about 15 years ago she started having severe chronic pain, and about 4 years ago she was diagnosed with stage 3 Breast Cancer.  

     Here is an incredible message that tells her story of finding freedom in Jesus at a 2014 National Women's conference:

A Different Kind of Freedom     

     It's 45 minutes long, but well worth the time to listen and weep with her and rejoice with her as you see the beautiful picture of grace and beauty Jesus has created over the last 47 years of saying "No" to a physical healing.  I hope you will take the time to listen.  

     She referred to 1 Peter 2:21 multiple times: "For  you have been called for this purpose, since Christ also suffered for you, leaving you an example for you to follow in His steps..."  If our Savior suffered and died for us on the cross and was obedient to that, we are not above our Master...we too can be obedient in the midst of great suffering.  She also talked about how her and her husband of over 30 years, Ken, were on the way home from a chemo treatment one day and talking about how suffering was like splashes of hell.  They then pondered on what splashes of heaven looked like--were they the "happy go lucky, everything is awesome" moments in life?  They realized that the splashes of heaven were the great closeness to Jesus you feel in the midst of those splashes of hell.  What an amazing imagery of how Jesus rescued us out of hell at great cost to Him--He bore the eternal wrath of God in your place and offers His righteousness as a free gift if you recognize your sin, repent and turn from it, and trust Jesus with your life.  I cannot wait to spend eternity alongside believers that have been refined in the fiery furnaces of this life, who have glorified hearts that will perfectly worship Jesus with me together forever---Oh Jesus come quickly!!!!

In His Mighty Grip,

Rachelle 

Here are a few pictures from my birthday---it definitely wasn't the fun horseback rides I had planned, but my sweet friends and family took me to the doctor and brought dinner to me and loved me and encouraged me--although there were lots of tears, there were lots of smile and precious memories made as well!  

Waiting at the doctor with Jenn

Lunch at Chick-Fil-A

Lunch at Chick-Fil-A

Rest time with Landon

Picture time with Hunter

Dinner and present delivery! 

My precious hubby who loves me so well! 

BAHA Adventures

     My Bone Anchored Hearing Aide or BAHA, has been one of the best things that has happened to me in the last 9 years.  It was implanted in March of 2006...I can still remember when I was given a special headband to wear the processor before the implant had healed completely.  Jordan and I were still living in the trailer portion of our house before we did the addition.  I remember putting my regular hearing aide on and turning some music on low and going in the other room...I could barely tell that music was on...I then put the BAHA processor on and I could hear every word of the music.  The difference was astonishing...I remember being so ecstatic I literally jumped up and down and started calling people I knew to tell them how I excited I was that I was able to get this surgery. Click HERE if you want more details on how the BAHA system works.

     Rewind to before I got the implant and was told about the surgery and how it would benefit me.  I remember researching online and the website stating that "most people can return to work within a couple of days of implant."  That was definitely NOT the case for me.  It was supposed to be an outpatient surgery, but they could not get my post surgery nausea under control.  I remember Dr. Cohen coming and asking me questions late at night to see if I knew what day it was and where I was, concerned that maybe the implant had affected something in my brain.  They ended up admitting me and giving me a super powerful anti-nausea med (don't remember what it was), but I had to be closely monitored and placed on oxygen.  I remember sitting up and eating some food at midnight because I was finally able to keep something down after dry heaving for hours.  

     I knew my body and knew I typically take longer to heal than most people, so I had taken a week's vacation from my job as a teller at Bank of America.  It was a wise choice because I could barely walk for a week and when I did have to go back to work, I had to sit and move extremely slow.  Instead of the couple of months my doctor had predicted for the site to heal enough to wear the processor, I took 6 months to heal.  When I could finally use it, I thought my problems were behind me and was so grateful I was able to use this system because I had never been able to hear so good. 

     Fast forward 9 years again and I am dealing with the worst infection I've ever had with it.  Over the years it has flared and there was one other time I couldn't wear my processor for about a day, but antibiotic ointment, tea tree oil, or a sea botanical from Arbonne, or a combination of the three typically got it right back under control.  

     For the last month I started having vestibular symptoms again...nausea every morning and vertigo off and on all the time.  I am more sensitive to different lighting and hard music or repetitive sounds from Jord's video games will make me spin.  I had scheduled a GYN appointment to rule out hormonal issues and didn't think much of the nausea because I tend to go in cycles and throwing up every morning can happen with me for no apparent reason.  Things that would send most people to the ER or their PCP, I place on the back burner and just deal with it as I live life and try to deal with the most pressing issue at the time, which often ends up being my lungs, cause obviously, breathing is a tad bit more important than say, getting to the bottom of my occasional "mystery pains".  My BAHA post was flaring a little bit off and on during this time, but occasional blood and tenderness has been typical and not overly cause for concern, until last Friday night.  I was using the special brush I have to brush the site and it literally started gushing blood.  I held gauze to it and put lots of tea tree oil and gelee on it and went to bed.  The next morning I couldn't use my processor because it was swollen and from what I could feel, it felt like the skin had swollen and was covering the post.  I knew I needed antibiotics.  

     I called my PCP's office, hoping they would save me a trip to Urgent Care or ER because for me with a depleted immune system, going to those places is a last resort because I am subjected to all those lovely germs.  The doctor on call called me back and explained that unfortunately because they hadn't seen me for this particular issue, I needed to go to a Minute Clinic or Urgent Care.  I was bummed, but understood.  I figured that would probably be the case, but it never hurts to ask.  I was extra bummed, because it was my in-laws, Bill and Cathy's, last day in town before they moved to Huntsville, AL and we had planned to spend the whole day together and go out to lunch to celebrate my birthday a couple days early.  We came up with an alternate plan and I set off to the nearest Minute Clinic.  

     I didn't wait long and was ushered into the office.  She started getting my basic info, finally found my insurance, then asked why I was there.  She took one look at it and said, "You have a really large cyst/abscess and it needs an "I&D" or "incision/drainage"...we can't do that here, you need to go the ER."  My heart sank.  Because I had started the process, I had to finish the process, so another 20 minutes to write down all my allergies and medications and a bill to my insurance for $79 to tell me that they couldn't help me.  Grr...trying to keep perspective and trust God's will, so I called and rearranged plans again and headed off to the nearest ER.  It was the ER where I was pretty sure a friend was a nurse and it was funny because when she was in nursing school we joked around about how she might get to take care of me one day.  Turns out, she works nights and had been there until 7 that morning...so close!  :)  

     I go through the maze that is ER's and get back to a bed.  The doctor comes in, takes one look at it, cultures it, then says, "We don't have an ENT on call so no one here can really take care of that.  It's so infected that it might be the actual post...if that's the case, they may have to remove it, or at the very least, hospitalize you for some strong antibiotics."  I was trying to process and not melt down on him at the thought of losing my hearing aide...he asked if I was allergic to Sulfa drugs, which of course I am, and after that he decided to just give me a strong antibiotic topical ointment and wait for the culture to come back and send me on my way.  He walked out of the room and I lost it.  I called Jord in tears and he prayed for me and then I called my Aunt Netta who has been a nurse since before I was born and asked her what I should do.  When I got discharged, I was starving, so we decided I would go fill my prescription, then Jord and Mom and Dad T. would come get me and go to lunch and then Frost for gelatto, and then decide where to go from there.  

     Since I had the antibiotic ointment, we decided to go ahead with our afternoon plans and spend time together, then I would go to another ER in the morning.  We got home that night and I knew the post needed a good cleaning...Jord was willing if Candy was squeamish, but he was really hoping she would be willing to do it...turns out she was an EMT long before I knew her so God provided in special ways yet again!  As she was cleaning it, she reminded me to "think happy thoughts, like when we will be in heaven and there will be no more pain or suffering."  It turns out that what was covering the post was a gigantic clump of dried bloods.  She gently cut that away and said that underneath it didn't look that bad.  It was definitely still infected, but not as bad as the doctor made it sound.  Jord and I decided that we would see how it looked in the morning and then make a decision on an ER at that point.

     The next morning, we changed the bandaging and it was still bleeding a little, but there was no pus or other signs of bad infection, so we opted to avoid the ER and research and see if we could find an otoneurologist, which is an ear/neurology specialist.  I googled and found one that is in Phoenix that is accepting new patients and is a vestibular specialist...exactly the doctor I needed.  Within my PCD facebook group, I found another lady that also has a BAHA and she commented on my post and said that she was told that vertigo, vestibular and balance issues are common with BAHA's and that she would never be able to ride a bicycle again because of the balance issues....well that would have been nice to know about 9 years ago!  Again, thankful I know God is sovereign and that this did not surprise Him as it has me.  In going forward with the current situation, we sent out prayer requests through email and facebook and I just called their office and they are passing the information onto the nurse and/or doctor, so I'm praying without ceasing that God would grant me favor with their office and they would accept me as a patient and take my insurance.   

     Today is my actual birthday, and although this isn't what I had planned at all, it is God's best for me.  I'm thankful I have friends and family that are willing to adjust our fun plans of horseback riding, a picnic lunch, and a family dinner, to serve me in driving me wherever I end up going today--whether its in Phoenix or to an ER in Tucson today, God is surrounding me with His loving care through His people--I am so thankful for the hope I have in Him and to have friends that are constantly pointing me back to Jesus and His completed work on the cross in the midst of my physical suffering here on this earth.  

     Thank you for lifting us up and surrounding us with His love and support as we navigate this new challenge.

In His Mighty Grip,
Rachelle 

"Fear not for I am with you, be not dismayed for I am your God.  I will strengthen you and help you and uphold you with my righteous right hand."
Isaiah 41:10  (Our Pastor shared this verse at the end of an email to our life group asking for prayer...I was about to respond with, "that's one of my favorite verses" then thought about it...which verse ISN'T one of my favorites lol???")  :)

              

      

   

Update on Life :)

     I did it again.  For those of you that know me well, you probably have a pretty good guess at what I did....again.  I overdid it...had too much fun...ended up with "negative spoons"...overbooked...and ended up sick.  This is a pattern that has often characterized my life as I navigate life with a chronic illness...my brain says, "Yes! I can do it!" but my body resoundingly reminds me that I should have said no or prioritized or redeemed the time better to avoid that inevitable "PCD hangover" or crash.  In writing these words, I'm tempted to do what I always do in my mind..."pull up the bootstraps of my faith and try again and promise Jordan that I will do better next time" or I REALLY will submit my schedule to you and stick to it...I promise!  In reading a fantastic new book by Elyse Fitzpatrick called, "Good News for the Weary Woman, Escaping the bondage of to-do lists, steps, and bad advice", I am immediately recognizing that although I have good intentions of leaning on God's grace or living each day in His strength and not my own, practically speaking I often leave God's grace behind, and this sinful pattern continues to characterize my life.  I have been praying for years that I would "redeem the time" the way GOD wants me to and not simply how I WANT to, yet I always seem to fall back into the same pattern over and over and over and over and yes, over again.  

     Jordan and I recently moved back to Tucson from Montana to be closer to the support group we have here in close friends and family.  I'll try and leave that story for another day, but being back here has been wonderful and God has affirmed our move in SO many ways, but it has also come with the temptation of filling my schedule to the brim and overflowing.  After having several warnings from my hubby I asked my dear friend Candy what she has observed with us living with them.  She asked what I thought lay at the root of why I overbooked and at first I thought it was fear of man--once my schedule was full if someone asked me to do something and I didn't feel like I could say no, that led to many a PCD hangover.  As we continued talking, I realized that in reality, I'm angry at God for the lack of energy and compare myself to others and WANT to do what I want to do.  In reality, when I overbook, I am telling God that I am not content with the energy boundaries He has given me, and I am going to push the limit and ultimately suffer the consequences of choosing to sin against God AND my husband which is getting sick or not having the energy to do the important things because I used up all my energy doing the fun things or what I REALLY wanted to do.  That realization cut me to the quick.  I am seeing for the first time that I had fooled myself into thinking that I was content with the life with PCD God has given me.  Through this realization and confession, I am reminded that Jesus died for that sin and that while I DO need to be diligent to plan out my weeks and rest when I need to rest, no matter what others may think, God's amazing grace through Jesus Christ righteousness is there to catch me WHEN I fail.  I tend to fall off the horse to one side or the other--do too much and end up sick, or give in to laziness and do nothing and give up living life in despair.  Neither of these paths are right--both are sinful, and by God's grace I'm prayerfully trying to navigate my schedule with the appropriate amount of energy and praying that I will keep my eyes fixed on Jesus and do what HE wants me to do to His glory.  I know it will not look perfect and I would LOVE prayer for wisdom and discernment as I press on towards the goal with the hope of THAT DAY when my energy will never run out and I will be able to do EXACTLY what Jesus wants me to do and worship Him in perfect fellowship with other believers for all of eternity!  Come quickly Lord Jesus!  :) 

     The promise of eternal life gets me so excited and motivated by His grace and to bring Him glory, I am going to step out in faith and try again.  Aside from catching this cold, we are doing very well.  We have enjoyed living with our dear friends Tom and Candy and their two boys, Aidan and Jake...its been fun to wake up to "Good morning Rachelle" and to get snuggles while reading to them at bedtime and watching Jord interact with them...and you can't forget all the hours and hours of conversations Candy and I get to have.  It's so sweet to see our friendship blossom and grow as we encourage and yes, exhort, each other daily.  We've started attending Holy Cross church and are enjoying getting to know them and being in close fellowship with our treasured friends Jeremy and Jenn and their son Landon.  It's also been awesome to be close to family again and get to hang out with Jen and Hunter a lot.  It's so fun to see Hunter get excited to see me and when Jord and I go to Jenn and Jeremy's Landon squeals with excitement.  And yes, it can get confusing having two Jennifer's so close to my heart. :)  These moments are extra precious and help heal my grieving "Mommy heart."  Rocking Hunter to sleep while singing Bible songs to him, running from Landon, playing "Super Hero" fights with Aidan and Jake, going to the zoo with these dear friends and family and watching the kids' reaction to the animals...I'm extra grateful to God for bringing me back to a place where I can enjoy making these memories that will be with me for a lifetime.

     One thing I miss about Montana that I never thought I would...getting to wear scarves!  We've had such a warm winter down here that I've only gotten to wear a light scarf twice.  I also miss the sweet friendships I made in such a short time, and again, those treasured friendships that are separated by miles makes me look forward to the great reunion heaven is going to be!  

     I'm planning on trying to write more again, so we'll see how that goes...obviously I go in cycles, but Lord willing I am prayerfully going to continue writing my book and blogging more regularly.  :)  Here's some pictures of the latest happenings.  I hope you enjoy them and I pray you all are resting well in Jesus' completed and FINISHED work on the cross!

In His Mighty Grip,
Rachelle :)    

My two "Jennifer's" :)  Jen and Hunter on the Left, with Jenn and Landon in the middle and me on the right. :) 

Hunter's response to "smile!"

Treatment time is exciting with Jake and Aidan and the two dogs :) 

Of course the family had to hit Red Robin as soon as I got back and yes, we devoured that mud pie! 

Me, Candy, and Jenn 

Love watching him play with the kids! :)