Category Archives: Hubs

Hope + Frustration

April 22, 2019 9:01 pm , 4 Comments ,

I’ve been struggling to write out my thoughts, and explain how things are going these days because it’s just been so hard.  I want some of each post to be encouraging and to share the hope that I have amidst the troubles…  but the truth is that there are lots of things going on in and on my body that just aren’t comfy, pretty, or ideal.  But the other part of the truth is that Jesus knows about it all.  He is my ONLY hope and I know He has perfect plans with all of this crazy that is going on!!!

Here’s the brutal, honest yuck in life right now:

I’m frustrated with my body right now.  My weight is climbing up so fast.  I’m frustrated with life and the fact that we continue having to move, uproot our family from family and friends.  Yank our kiddos away from youthgroup, sports, their normal.  We had to leave our ranch in Bend, leave Hawaii… all because of my health.  I’m weary from constantly having to start over, pack up and begin again.  I’m frustrated with the body that my hubby has to go to bed with and the wife he has to wake up each morning without.  I’m angry with doctors for speaking lies to me for years.  I’m angry that for 25 years there were NO answers and that has caused permanent brain damage.  I’m angry that my hair is falling out and hasn’t grown for over a decade.  I’m angry my face has breakouts all over it.  I am frustrated I can’t sleep and I have zero energy.  I haven’t been allowed to work out for the last three years, and now that I can… I’m soooo out of shape and don’t know where to start.

I’m overwhelmed.

I feel hopeless.

I’m weary.

I’m sad.

I’m frustrated.

I am so thankful for the hope I have in a living Savior.  I’m hanging on the words of this song along with others each day…  ready for my miracle and waiting expectantly for what God is still doing in our family while we “Live It Out” daily in the journey He has allowed us to walk through… His Beauty FULL mess!

XO,  Dani

In Christ Alone
Stuart Townend
In Christ alone my hope is found,
He is my light, my strength, my song
This Cornerstone, this solid Ground
Firm through the fiercest drought and storm.
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand.
In Christ alone! – who took on flesh,
Fullness of God in helpless babe.
This gift of love and righteousness,
Scorned by the ones He came to save
Till on that cross as Jesus died,
The wrath of God was satisfied 
For every sin on Him was laid
Here in the death of Christ I live.
There in the ground His body lay,
Light of the world by darkness slain:
Then bursting forth in glorious day
Up from the grave He rose again
And as He stands in victory
Sin’s curse has lost its grip on me,
For I am His and He is mine 
Bought with the precious blood of Christ
No guilt in life, no fear in death,
This is the power of Christ in me
From life’s first cry to final breath,
Jesus commands my destiny
No power of hell, no scheme of man,
Can ever pluck me from His hand
Till He returns or calls me home
Here in the power of Christ I’ll stand.
Posted in: Babesia, Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

Tennessee and Oahu… AGAIN

March 16, 2019 5:01 pm , Leave a Comment ,

Update from Tennessee and Oahu:  that’s right…  once again; running from pain. Overwhelmed with all the emotions each of us face each day. I struggle with wanting to wake up each morning just to know I’ll likely be facing crippling pain…  a horrible nightmare from the past three years and we thought it was behind us. It’s literally been like living in a horror movie day after day. We pray it won’t be and honestly do our best to expect a good night…  we try to live each moment with our family to its fullest, never knowing if it’s our last…  it’s been so very HARD guys.

Our kiddos are beyond tough and yet even the toughest break at some point…  Cory is tirelessly at my side with cramped hands after hours of the most intense and deep massage in my neck and shoulders. He wakes early to help with kids, breakfast, school, he works beyond full day’s and ends each one meeting my every need while in these episodes.  We’ve come so close to our break point…  too close and desperately NEED help!  A miracle. Healing. 

Cory sent the big kiddos and me back to Hawaii Thursday and I spent several hours at the doctor and getting lab work drawn first thing Friday…  my doctor is amazing and we are confident that he can keep me alive, so coming here was an easy decision.

As we’re finding out more and more…  the likelihood of me ever being able to return to Tennessee or anywhere with cold seasons is becoming less and less of a reality.

We need to find housing on the island ASAP. We will likely have another HUGE move ahead of us and the financial stress of all of this is just beyond what we know how to deal with. We are such a close family and being apart like this is not what we want, but necessary until we get some more answers. Thankful God knows…  we need a miracle with provision as well… housing, work, moving logistics, help with our Tennessee properties, there’s a bit of a list!😬

For now; that’s our update!

Praise Reports:

Safety for our traveling to Oahu

Getting right into the doctor

Being able to stay at my brothers temporarily

Breath in our lungs and another day to live!

Prayer Requests:

Healing

Housing on Oahu

Work for Cory

Finances

Safety for Cory and Grey in TN

Safety for Dani, Hayden, and Lucy on Oahu

Our Family back together soon!!!

LIVE IT OUT!

XO, Dani

Posted in: Babesia, Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

We’re still here!

October 17, 2018 4:28 pm , 3 Comments ,

We’re still here…  plugging along and trying to be intentional about our everyday. Our family is deep into our school year and the kiddos are learning tons while getting into the swing of a new curriculum. Hayden and Lucy are enrolled full-time at Liberty University Online Academy and the days are long and full. Grey is also enrolled in Liberty for math and language arts, a co-op, and Classical Conversations where she enjoys being with classmates two days each week for all her other subjects.

Paddling season for our family has just ended for the winter season and though it’s nice to have all the extra evenings and weekends, we are all missing our time on the water sooooo much. Grey is enjoying ballet, the bigs are always looking forward to their youthgroup nights, and Cory and all three kiddos love their daily CrossFit workouts on the lanai.

As for me…  I’m currently sitting here at the doctor receiving infusions and praying desperately for energy and strength for each day. I’ve been in horrible back pain for the last 14 months now, we’ve been trying Rolfing,chiropractors, pain meds, natural muscle relaxers, had an MRI, have had countless injections, you name it… we’ve tried it. We’re now looking into a new mattress and of course continuing to pray for relief and healing.

I NEED sleep to be able to recover and heal after all my treatments in Mexico. My body is so tired and fatigued, and I yearn to be so much more than I’m able to be right now. 

I’ve struggled to post for so long now as I don’t like sounding like a complainer. The truth is hard right now with how I’m doing, yet in lots of ways I’m doing much better than I was last year. I fear that in sharing these hard moments that people will lose heart and hope in all that God is doing and all that is in store for us still. I want to keep smiling through the pain, laughing in the discouraging times, and trusting Him more wholly in every breath.

We need miracles in so many ways right now:

We need to find a home.

We’d like to get Max our horse over here and need to find a place to keep him or a home with land.

We need a financial miracle for health expenses, home, and life…  I’m far too expensive right now.

We need healing in my body. Complete and total restoration.

We need wisdom and direction for all these areas.

Thank you all for your prayers for us. We thank God daily for being our strength, our grace and our joy when we just can’t see anything going well at the moment. We are confident that He knows just what we need and He is enough for us ALWAYS!

Choosing to continue to give Him our beauty-full-mess and “Live It Out” for Him one day at a time.

Sincerely,  Dani

Posted in: Babesia, Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

Update from Mexico 🇲🇽

May 5, 2018 10:49 am , 2 Comments ,

Already in week five of this intense treatment down here in Puerto Vallarta, Mexico and I’ve yet to have a spare moment to write.

We are doing as well as we can, we’re at the clinic at 8:30ish each morning and some days we don’t leave until 8pm at night. Other days we have a short break between the majority of treatments that last most of the day and then we come back for He last two that have to be administered later in the evening apart from the earlier doses.

Ive received four red cell exchanges and I’m now officially about half Mexican, I’ve received two plasma transfusions and I still have another plasmapheresis and red cell exchange to do next week.

Our days are long and full…  we’ve had countless tests ordered and run and we’ve confirmed diseases we knew were present and found new ones as well😰.

I received my central port and at the same time I was under anesthesia we asked to have my bone marrow biopsied.  We now know that while my blood shows no signs of Lyme disease (since Germany)…  I have a very rare lyme infection in my bone marrow. We’re aorking hard with our amazing doctor here to irradicate it as well as the Babesia and Bartonella, an EBV virus, and my MRI today is showing that my pain is not due to infection inflammation, but rather two discs that are protruding and will need surgery. I also received my IGG immune system results and I’m so immune compromised that I’ll be needing at least six IV IG treatments and possibly ongoing monthly. These are approximately $20,000.00 each and would be a monthly expense.

All of this info and then the financial stress, emotional stresses and being apart as a family is making it hard for me to breathe today…  cory is by my side each and every moment of my days and nights and is seriously a gift and blessing I am beyond grateful for and I’m just not sure how he hasn’t caved under all this pressure yet.

Some of this news is new as of today, some yesterday and we honestly haven’t had time to really pray, process, or think through the details of it all yet. It’s wonderful to finally be receiving answers and taken seriously and yet; this is BIG and heavy stuff and we need time to figure things out.

Thank you for your prayers…  please don’t stop!

Ill attach our fundraising site to this post again and we are soooooo grateful for any and all of your help financially…  this just keeps growing and we still have yet to treat our kiddos😬.

click here to donate

Praises to a Great and Mighty God for leading us here this far!  We are in the best hands we could be in for all of this.

Praises for parents that are able to be with or three kiddos and love on them for us!

We love you all and we will continue posting little pieces of our journey on instagram and Facebook in between blog posts, so make sure to find me there if you want the little bits on days that I can’t blog😜!

Live IT Out,

Dani and Cory too!

Posted in: Babesia, Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

Calm before the storm… Day 3

April 8, 2018 8:12 pm , 2 Comments ,

Day three… this was the first and likely last day we will have to see a bit of this city. So much culture here… we walked and took it easy. I slept till almost noon and feel nauseous from all my treatments so far… tomorrow starts the first super full day of treatments and lots of invasive stuff… a bit nervous, a bit weary, and a TON hopeful because I know this guy… Jesus💪🏽🙏🏼!

We would LOVE your prayers:

-safety

-wisdom for doctors, Cory and myself

-my veins to hold up until I get my central port

-my body to accept treatments

-my healing

-kiddos Joy and peace

Praises:

-safety getting here

-financial help

-meals for kiddos and papa in Hawaii

-wonderful doctors and nurses at hospital

If you can help us with these staggering bills (CLICK HERE!), or if you have already; we cannot thank you enough. If you’ve brought a meal or three…  yoy are amazing, and if you’re praying alongside us…  PLEASE don’t stop!

We need you and we LOVE you all!

Trust in the LORD with all your heart And do not lean on your own understanding. In all your ways acknowledge Him, And He will make your paths straight.
‭‭Proverbs‬ ‭3:5-6

LIVE IT OUT!

 

XO,  Dani and Fam❤️

Posted in: Babesia, Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

Then and Now…

July 25, 2017 4:09 pm , Leave a Comment ,

It’s been awhile…  I know. But we’re still here and plugging along. I’m sitting here at my doc appt for today and realizing there’s so much to be grateful for.  I’m sitting next to a sweet momma of three who just found out she has stage 4 metastisized cancer… she’s desperate for healing and in shock.  You can see the hurt on her beautiful face and the weariness marks her every step. Please pray for these people that I meet each day…  they need healing, they need to know Jesus, they are absolutely precious and I cherish these days we share stories, tears and laughter!

I, too have been struggling.  May 19th I didn’t think I’d make it through the night.  I had alarming lab results and was plummeting faster than I knew was possible.  Prayer chains started and texts went out that night. A dear friend found a clinic that looked promising and I committed to calling first thing in the morning.  Every clinic I had called said that the wait would be at least 8-12 weeks just to be seen and I didn’t have time on my side.  I called this last doctor and shared my lab results with the lady who answered the phone…  she literally said “Sweetie, you cannot survive like that…  come in right now.”    Tears streaming down my face, I agreed and still in shock; Cory and I hopped in the car and ran to see this new doctor.  He immediately got to work and I’ve been making positive strides each day.  It’s a slow and steady battle, but one we’re having to take on every day to keep me alive and able to fight this disease head on.

Doctor T is known across the globe for helping people in intense ways and often as their last resort that they end up wishing was their first😬. I’ve been seeing him up to six days a week since May 20th and as I sit here right now… I’m reminded just how good our Great God is that He would have us in this place and use prayers, family and friends to find this doctor, that he would see me the same day, and keep me alive.  He’s always got my back.  He hears my prayers and He’s been carrying me through this season when I couldn’t walk through it on my own.

Cory and my kiddos are being so strong and pressing on with me away each day, and yesterday I wanted time with the kids, so we all sat in the IV room together and talked.  We’ve learned to make memories in doctors appointments as well as the beach, we’ve learned that there is no time Luke the moment we’re in NOW to tell each other how much they mean to us, and we’re resting in Gods perfect plans for what our tomorrows bring!

We need prayers for healing, financial provision, strength, perseverance, and patience

Thank you for loving our family and praying us through this journey!

XO,

Sincerely, Dani

 

Posted in: Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

detoxing, detoxing, DETOXING

October 4, 2016 10:23 pm , 2 Comments ,

I’ve had a LOT of questions about our detox regiment… and I feel like it’s time to answer some of those questions on here now.

Just like how no two people are the same, detoxing for everyone can vary and should be set up individually in some instances.  We have been working soooooo hard on detoxing since two full months before heading to Germany.  The same treatments were continued while at the Hospital in Germany, and again immediately after we returned home.  All along this journey, I have felt like detoxing was going to be one of the BIGGEST pieces of this whole process, and have pushed to do so as hard as I can.

Cory and I are at the doctor for IV’s 4 days each week and it looks like this:

Monday- High dose Vitamin C/ Artesinate

Tuesday- PTC/ Glutathione

Wednesday- PTC/ Glutathione

Thursday- Artesinate

This is slightly less than before we went to Germany, as we were also doing one MAH treatment with UVB light each week as well.  After getting home from Germany, Cory and I have been doing the exact same treatment, but I started feeling like something was off for Cory and immediately asked to have labs drawn.  We found that his liver enzymes are quite elevated and I started reading up on the “hows” of fixing it, and the “why’s” of how they got high.   We have decided to alter Cory’s detox routine and use some alternative treatments.  I was also reading up on “binders” like cholestyramine, bentonite clay, psyllium husk, activated charcoal, etc…  I really believe that we have been purging the toxins very well.  Once the toxins are released, whatever isn’t excreted can be re-absorbed into fat tissues.  I think that a big problem with detoxing is that you can overwhelm your organs with toxins that end up not being completely purged so to speak… I call it a “dump and purge”.  You can detox or (dump) too much if you are not also (purging) really well and sometimes you need more fiber or binding agents in your body to get it all OUT!

Basically… this is a lot of words to tell you that I do believe that there are some great basic detox methods which we have been doing for quite some time and steadily now, but I also know that it is extremely important to make sure you are also using other methods to detox and you should be alternating them constantly.

We are also doing these following detox’s:

Bentonite Clay

Activated Charcoal

Cholestyramine

Ionic Detox Footbaths

Dry Skin Brushing

We take Isagenix’s Cleanse 4 Life, Isa Flush, and Ionix Supreme

Cory is using Pekana Homeopathic Detox Drops

AND we both take some super duper awesome pre and probiotics!

We are also looking to buy a Far-Infrared Sauna soon as that is something that we need to do a few times each week.

img_2181

I’ve been having some awful itching on my hands and clear tiny bumps all over my palms and up and down each finger… they are now incredibly dry and peeling. Just one of the many ways that detoxing has been effecting us.

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After each IV treatment we wrestle with extreme fatigue, exhaustion, and often times horrible headaches along with the MOST intense brain fog and lack of being able to concentrate we’ve ever dealt with😬

Staying ahead of the detox game is the most important thing you can do in a Lyme and co-infection battle.  If you are not careful you can go into organ failure, be extremely sick and in extreme cases… go septic and die.  It is crucial to not only kill, but excrete these toxins in a timely and safe manner… but it takes so much time, energy and sooooooo much moolah.

If you are in a detox battle… stay the course and do not be afraid to change things up when they quit working for you… fight for the right answers, after all; you know your body better than anyone else!

XO, Sincerely Dani

Romans 12:12b. Don’t quit in hard times; pray all the harder. 

Posted in: Family, God, Health, hubs, Life, Lyme Disease, Update

the battle is FIERCE…

September 27, 2016 10:24 pm , 8 Comments ,

Another week… 5 more days of IV’s… more fatigued than we knew was possible… headaches are almost constant… this battle is fierce…

We are tired.

We hurt.

We are so weak.

We cannot concentrate.

We are lonely.

We feel very discouraged.

BUT

We won’t quit.

We are tough.

We will push through.

We will stick together.

We are clinging onto HOPE.

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With Lyme dead and constant detoxing underway… these other diseases are showing their ugly faces and showing off with all kinds of awful symptoms.  I find myself scared half of the day.  Worrying about all the new things happening in our bodies, worried about how I can press through this new day and be a good mom, wife, patient, and coach.  Stressed about paying all these big bills that are endless.

Basically… my head is spinning with all these things that are life as we know it today.  I wish that this could be a positive and uplifting post, but it is honest and raw because it is our life right now.  What I do know is that somehow, somewhere or for someone… God has a plan in all of it.  So, as I close my laptop tonight; I am choosing once again to lay down my worries, stresses, burdens, hopes, dreams, my hubby, and each of these precious kiddos at the very feet of The One who holds Heaven and Earth.  He is good and I choose to give Him my BeautyFULL mess tonight!

Sincerely, Dani

Rest in HIS hope tonight with me:

Jeremiah 32:17 Ah, Lord GOD! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.

Joshua 1:9, “Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the LORD your God is with you wherever you go.” 

Isaiah 41:10, “Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.” 

 

Posted in: Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

Lyme Disease can beat it…

September 4, 2016 10:16 pm , 3 Comments ,

It’s been far too long since the last update… and I apologize.  I did post this update on Facebook and I know that lots of you have seen it already, but for those that have not yet, here it finally is:

Cory and I are officially 100% Lyme Disease free… We have to detox all this dead bacteria out of us, which is going to be quite an intense process ahead. We are beyond thrilled to come home this week and begin detoxing as well as starting treatment to kill the other two known co-infections that I have in my body. We would LOVE prayers for safe flights and travels for all 7 of us tomorrow and Tuesday, prayers for wisdom on our next steps in finding treatment for our three kiddos as well as wisdoms in my next treatments!

We are doing the happy dance and praising God for all He’s done so far… Thank you for sharing and praying with us… We love you all!

Sincerely, Dani

Posted in: Family, God, Health, hubs, Life, Live IT Out!, Lyme Disease, Prayer, Update

Final Full Body Hyperthermia is Tomorrow!!!

August 16, 2016 12:58 pm , Leave a Comment ,
image

Cory trying out the awesome bed!😁 Man, I love him!💚

Another fast post… but we are about to hit the sheets and hope to sleep before our second and last full body hyperthermia!  I am not nearly as nervous as before, now that I know what to expect… but it is still such an extreme treatment with intense heat for 8 hours of sedation.  We will both be undergoing this starting at about 8am Germany time which is 11pm West Coast/ Bend time and we would  LOVE prayers tomorrow

Guess we're now both officially patients😁

Guess we’re now both officially patients😁

Please continue to pray for our littles to have peace and to be strong.  Their little hearts are so precious and I hate to see them nervous, stressed, or hurting.  So far, they seem quite good… but they also put on a strong face for me to help me be stronger too, so it is often hard to REALLY tell.

We bought them each a Lego set to help pass the time we are needing to spend resting… look at that mess/ fun!image

Please pray for my parents to have energy to take on three little balls of energy, and to be able to care for us both tomorrow too!

Please pray for safety all around, for Cory and I to have peace and for Cory not to blow a fuse due to not being able to eat for about 48 hours of time total… he is STARVING!!!!

We are so very grateful for your support financially, for your friendships, and most of all for your prayers each day!  We need more of all of it, and you are each so treasured!

Sincerely, Dani

Posted in: Family, God, Health, hubs, Life, Lyme Disease, Prayer, Update