Author Archives: Dani@beautyfullmess.com

Update from Mexico šŸ‡²šŸ‡½

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

We are doing as well as we can, weā€™re at the clinic at 8:30ish each morning and some days we donā€™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 Iā€™m now officially about half Mexican, Iā€™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… Ā weā€™ve had countless tests ordered and run and weā€™ve confirmed diseases we knew were present and found new ones as wellšŸ˜°.

I received my central port and at the same time I was under anesthesia we asked to have my bone marrow biopsied. Ā We now know that while my blood shows no signs of Lyme disease (since Germany)… Ā I have a very rare lyme infection in my bone marrow. Weā€™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 Iā€™m so immune compromised that Iā€™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… Ā 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 Iā€™m just not sure how he hasnā€™t caved under all this pressure yet.

Some of this news is new as of today, some yesterday and we honestly havenā€™t had time to really pray, process, or think through the details of it all yet. Itā€™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… Ā please donā€™t stop!

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

click here to donate

Praises to a Great and Mighty God for leading us here this far! Ā 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 canā€™t blogšŸ˜œ!

Live IT Out,

Dani and Cory too!

Calm before the storm… Day 3

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… JesusšŸ’ŖšŸ½šŸ™šŸ¼!

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 youā€™ve brought a meal or three… Ā yoy are amazing, and if youā€™re praying alongside us… Ā PLEASE donā€™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.
ā€­ā€­Proverbsā€¬ ā€­3:5-6

LIVE IT OUT!

 

XO, Ā Dani and Famā¤ļø

Help us Kill Babesia and Bartonella!

With desperate times calling for immediate treatment in my body… we have found the only clinic that will kill off these horrible diseases “Babesia and Bartonella”. Ā I will start off with a bone marrow biopsy, surgically receive a central port, many red blood cell exchanges (transfusions), plasma exchanges, and countless other treatments. Ā Cory and Danielle are leaving the USA again, but this time to kill the co-infections that came with the Lyme disease (killed in Germany 2016). Ā We are beginning treatment on Friday, April 6th, 2018 in Puerto Vallarta, Mexico and will undergo intense treatments from 8am-6pm six to seven days each week for 6-8 weeks. Ā Please PRAY for all circumstances with travel, safety, our three kiddos and their care, please pray for all procedures to go as needed and for complete healing!

If you are able to help us with these expenses or know of someone who could, we are beyond thankful and blessed by ALL help! Ā We love each one of you mighty prayer warriors and friends and cannot wait to be back home with a disease-free body so soon!

XO, Ā Dani and Fam

Click here to financially support us!

Please don’t forget to PRAY PRAY PRAY!!!

Update… Prayers Needed…

Here we are again… Ā finally… back on the blog!

Last time I wrote we were finishing out RV trip around the country abruptly due to the return of my horrible pain. Ā Lucy and I flew back to my doctor in Hawaii and stayed with my brother while Cory, Hayden, Grey, and the pooch stayed at his aunt and uncles in SoCal to sell the RV, and drive back up to Bend, Oregon where they had to pack up all our belongings, and fly back here to be with Lucy and I about a month later.

As soon as Lu and I arrived on the island we saw the doctor and began treatments that very day to build my body back up and mainly get “ferritin infusions” so that my ferritin (part of my iron that the Babesia disease eats) would increase. Ā Unfortunately, about two months into these treatments… my body has built up some sort of a tolerance or allergy to receiving the ferritin and my labs are not responding like they always have and are supposed to. Ā I began severely itching anytime I touched water of any kind and we immediately began searching for new and immediate answers for a treatment to KILL off all the Babesia and FAST! Ā I cannot live long without the iron my body requires to live… so we are desperate for answers and have been spending all our time searching and asking for prayers.

My parents found a clinic in Puerto Vallarta, Mexico that offers the exact treatment that I’ve been looking for and they are able to get me in next week, they are helping us find a condo to rent near the clinic and as of now God is opening door after door for this treatment. Ā We have soooooo many decisions to make between now and next week… Ā  we are working on the blood testing needed in advance, securing the condo, getting my daddy here to take care of the kiddos (they have lots to get in order in a matter of a few days in Bend so that he can get here), we have to get flights for him, for Cory and myself, we have to be able to pay the doctor upon arrival, and the list just keeps on going and going…

I will post an update on the treatment and what all we will be doing while at the clinic for 6-8 weeks.

Please, please pray for:

All of these steps to fall into order.

For us to clearly see open or closed doors directed by God.

For anxiety and stresses to be at a minimum for all of us.

I have NEVER been away from my kiddos like this before and in a foreign country too.

Please pray for all the help we need in making this happen…

Prayers for safety for my dad in his travels

Safety for Cory and myself with flights and travel

For continued peace and strength for us all

For Complete Healing

Praising God for:

This clinic and Dr. in Mexico

For the open doors already

For my daddy coming to be “Super Papa”

For a Great Big God who is bigger than this whole “beautyfull mess”

Thank you for your continued love, prayers, and support for our family in this crazy journey, Ā We LOVE you all!

Continue to “Live It Out” each and every second for Jesus!!!

XO, Ā Dani

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever, AMEN

Ephesians 3:20-21

Last chance to buy our Nashelle Jewelry!

Our Nashelle 2017 warrior campaign is coming to a close and we wanted to let you know this is the last time youā€™ll be able to order our necklace and bracelet! Thank you all soooo much for supporting us… we are about to begin another intense round of doctor appts for Myself as well as we are working on some options for treating the kids too! Everything helps us so much, and we couldnā€™t do it without yā€™all! And a HUGE thank you to Heather Nashelle for everything! We love you!

ā€œLive It Outā€… Ā to us this means that we are chosen to walk this journey by God. The choice is ours daily how weā€™re going to ā€œLive It Outā€ for Him. Our prayer is that each new day weā€™re gifted; we choose to live each moment sharing Gods love, showing Gods love and always pointing to Him alone as the One who is worthy of our each and every breath.

We are always praying for healing and know that He alone can heal our disease ridden bodies in an instant… Ā but even if the healing doesnā€™t come, He is a good, good God! Ā We will choose to Live It Out moment by moment for Him!

XO, Ā Dani

Necklace

Cuff

The men are both wearing the cuff. Haydens does not have antlers and Coryā€™s does. All three of us girls are wearing the necklace and Lucy chose hers without antlers.

TOUR our Home On Wheels!

Weve had so many people asking for pictures of our remodeled RV, several others wanting pics of certain things or wondering where something was from… Ā I figure itā€™s time for a good tour!

Many of you know that as soon as we returned to Bend from Oahu we began remodeling our coach. This ended up being a complete overhaul to make it HOME! Ā Iā€™m the type that needs to feel at home when Iā€™m there, I love to have things deep cleaned, organized and we always end our day with picking things up so that you get to enjoy waking up to a clean space… Ā this had to carry through to our home on wheels especially since itā€™s a small space shared by five of us and our pooch!

This called for a clean and minimal approach which began with everything going WHITE! Ā I also knew that we needed the space to have a cohesive look and feel to it to have that homey vibe and to feel clean to live in… Ā (I told you, Iā€™m kinda ridiculous about clean and organized and how I need that homey feelinā€™!). Soooooo… Ā aside from everything being painted white, we stuck with consistent interior colors of white, gray, and blue. Aside from that, I was then able to have fun with patterns and prints. I love to mix and match patterns so that it softens the look and feel and creates a cozy and fun environment for everyone. I usually stick with one botanical, one solid, one stripe or geometric, and one abstract! Ā I absolutely LOVE how this all turned out in our coach. This way nothing is overwhelming or sticks out horribly and each kiddo was still able to accessorize and add pops of color to their sleeping spaces and I am not on overload and freaking out by all the clashing colors and busyness going onšŸ˜‰. Ā This coordination of colors went all the way to the upholstery, bath towels, and comforters… Ā but stopped in time to let kiddos have fun throw pillows, and blankets at the ends of their bunks, pictures displayed, etc… Ā and no one is complainingšŸ˜

We tore out all the flooring, replaced it, replaced all plumbing fixtures and upgraded the shower to a high pressure shower head that we LOVE! Ā We installed a kitchen backsplash, and tiled the bathroom walls, then added some wallpaper too! Ā We replaced several lights with fixtures Cory made, replaced all bulbs with LED ones, we replaced all hardware on cabinets to an unlaquered brass handle, we reupholstered ALL window valances after we took apart and threw out all the frilly parts, we reupholstered all panels, the dining table cushions and surrounds, three bunks, and new bunk curtains too! Ā We installed two stand up desks that fold flat to the wall, sooooo much storage in the bathroom, bunks, and master bedroom, as well as under the bed… Ā we seriously live easily Day to Day with everything and wayyyyy more than we need in this Class C motorhome and have more space than we need; though, we LOVE having each square inch we havešŸ˜œ.

Lastly, when we were on the hunt for this RV… Ā Cory and I each had our ā€œmust haveā€ items and since we were looking at used coaches, this became quite the task. Ā On the top of Coryā€™s list was having a Diesel engine, and on mine was each person having a dedicated sleeping space that did not double time as the couch or dining table. Ā We found it… Ā and knew that once it checked off both of those top two ā€œmust havesā€ it had to be the one! Ā Our coach sleeps ten because of having three bunks and one of them being larger than a queen size bunk above the cab. Ā All of this inside our 34ā€™ Class C Motorhome!!!

Here are all our pics… Ā Iā€™m sure there will be questions. Just comment here on the blog so everyone else can see all the answers too!

Welcome to our HOME!

Not the miracle weā€™ve been hoping for…

… but, I believe it was a miracle nonetheless! Ā I was literally bent over super deep, muddy, tire tracks chalking tires with some rough hewn fence posts, scraping up gravel from the sides of the road to fill tracks and offer traction, kiddos were hauling over more lumber they found, cory was unhooking our tow pickup and trailer and constantly adjusting boards, between trying to carefully ease our big rig out of a mud pit in Ohio.

You see… Ā we were just stopping at Cuyahoga Valley National Park on our pretty short drive this Sunday early afternoon. We followed the signs to the RV/ trailer parking and thatā€™s when it all went south. Literally; SOUTH. Our motorhome with tow trailer and truck sunk deep down into this grass/ gravel/ very wet mud. There was no stopping it from happening or a quick fix to get us out. We were very stuck and we all hit the ground moving to work together with whatever resources we could find.

It was so great to all be working together and happily at that! Ā We werenā€™t in a good situation, but we were working together and cooperating and laughing when we could… Ā little did we know weā€™d be making memories of such importance today. We made memories of mud seeping into our tennis shoes, memories of hunting for logs, rocks, sticks, gravel, whatever we could find. We made the kind of memories that we will be sharing with our grand kiddos and generations to come!

Now, jump back to the miracle part!!! Ā I was bent over scooping up gravel into my makeshift traffic-cone- shovel and asking God to send one person to help pull us out. Cars and trucks and trains and people walking and biking and running were constantly passing us. We just needed one persons help and we were getting more and more desperate for it the longer we were working so hard in the rain and mud. I am not even kidding when I say that I was mid-sentence asking God to send help when I hear Hayden yell… ā€œHeā€™s coming to help us!ā€ Ā I looked up and sure enough… Ā there was a family in a giant white dodge truck coming to help us! Ā We had some ratchet straps with us and together the motorhome was pulled out in about five minutes after praying!

Now I donā€™t know about you, but sometimes I feel like Iā€™m so busy asking for the one miracle that I think I need most (healing)ā€¦ That I nearly overlook the ones that He performs for us in the every day moments. You can call it a coincidence or you can call it pure fateā€¦ But I know what my prayer was for and how our great God answered in the moment we needed it most!

Jeremiah 32:27 ā€œI am the Lord, the God of all mankind, is anything too hard for me?ā€

I wouldnā€™t have hit the road today seeking this sort of a chaotic adventure… Ā but Iā€™m beyond blessed that we had this opportunity to see God provide! Ā I loved working with my family, and of course we documented it in pics too… Ā because I want to remember this answered prayer- miracle forever. God knew I needed to see some good from Him in a season that has been filled with so much hard stuff. Ā Sometimes I feel like I just need to see Him move. Today God moved for me, not like I expected. But of course in His perfect way!

Psalm 66:19 ā€œBut truly God has listened; he has attended to the voice of my prayer.ā€

Iā€™m continuing to seek Gods healing in my body and family and Iā€™m encouraged today that He does see and hear me. HE knows my every thought. He hears my prayers and He; more than anyone, including myself knows exactly what I need and when!

Hanging onto Hope and Living It out!

XO

Sincerely, Dani

I John 5:14ā€œAnd this is the confidence that we have toward him, that if we ask anything according to his will he hears us.Ā 

P.S… Ā We still saw this gorgeous National Park and have arrived safely in Erie, PA for the night! Ā Onto Niagara Falls tomorrow!

 

Holding tight to what matters!

We all have things we value. Those things we hold dear to our hearts. Ā I always have my favorites and Iā€™m guessing you do too? Ā My ā€œfaveā€ list so to speak has changed through the years and of course it did at different stages of my life based on age, if we were married or single, had kiddos, etc…

With Lyme Disease and Babesia, it has made the most drastic changes to date and its one of the reasons I find myself thankful for this season in my life. Ā  You see; with this disease and battle weā€™ve been facing for a VERY long time now, weā€™ve lost a lot. And by that I mean lots… Ā weā€™ve lost countless relationships, weā€™ve lost homes (had to sell them), lost sight of dreams once had, lost wayyyyy too many nights of sleep, lost all our things (had to sell them), lost our truck (had to sell it), not to mention losing hair, a body that could get in shape, and so much more.

But I feel like my ā€œFAVE LISTā€ is sooooo much better now because I can see past all the clutter. I can see in the simplicity of life, and not exactly in the circumstances that I would have ever in a million years hoped for… Ā but I have new faves. I cherish our family time more than ever before and if you know me then you know how much I already did before all of this. Ā I still absolutely love a good pottery mug that just fits perfectly in your hand filled with coffee. Ā I love laughing. I have also realized what an enormous treasure genuine, low-maintenance, pick-up-right-where-you-left-off, simple friendships. Weā€™ve made it an absolute ā€œmust-doā€ on our trip across the country to see those people that mean so much to us and it has been the most amazing and recharging time! Ā These people are treasures to us. They are such encouraging, fun, silly, laugh with you, cry with you, make you better, amazing to just do life with types of people and we love each one of them!!!

(I always have such good intentions of snapping a pic before we say our goodbyes, but I often forgetšŸ˜¬.).

Here are a few of our people that we will continue to keep in touch with hopefully more than before:

Rachelle and Easton: (why are us mommas not in this?)
Storlie Fam: (forgot our group picšŸ˜”) Breeden Fam: (forgot our group picšŸ˜°) Duncan Fam:
York Fam: Where are those hubbys of ours? Ā Yorkā€™s again: My Parents: Buenteo Fam: Underwood Fam: Ā (again, no group pic)

Regan York and Fam:

LaMonica Fam: Mom and Daddy: Chowning Fam: Ā (forgot group picšŸ˜¬)

of course… Ā my cousins, grandparents, my parents and sisters and Coryā€™s family too!

and of course there will be more people to hug on the rest of they way… Ā but these are the ones weā€™ve gotten to catch up with so far!

Remember to Pack Light and Love Heavy!

Live It Out, Dani

My Parents Were HERE!

Iā€™m lying in bed here in Mt. Pleasant, Texas thinking about what to share with yā€™all for the evening. Itā€™s been a hard day of hardly making it out of bed because of severe fatigue. The kind that makes it hurt to speak, and you can barely utter a one word answer. Cory drove us over 300 miles from Austin to our RV site here and I rested in bed answering the occasional school question that the kiddos had. Ā I felt a bit more rested after that and had enough energy to play a game of fooseball with Grey, make dinner and plan school for tomorrow… Ā itā€™s the tiny victories for the day that Iā€™m choosing to find joy in.

 

Since we left Oklahoma and the York family we met up with my parents who flew in to see us and we spent a couple fun days in Waco. We checked out Magnolia Farms, and attended the third annual Silobration… Ā seriously amazing music, great food, and my fave company to boot! šŸ‘¢. We drove to Austin and spent the next three days with Mom and Daddy exploring the mountain country of Wimberley, went on a short hike, and saw long time friends… Ā the kinds that are like family and you can pick right back up where youā€™ve left off. Ā We had to say goodbyes to my parents yesterday and then drowned our sorrows in some amazing Mexican food downtown Austin. Then to top off our Austin stay, we had such a sweet evening visit from some of our Hawaii ohana!

Somedays our time is filled to the brim with activities, exploring, and friends… Ā and others are spent driving and hitting the hay early. Tonight Iā€™m thankful for the last couple weeks of friends and family and Iā€™m going to let my body rest extra since that seems to be what itā€™s begging me for.

Thank you for the continued prayers… Ā Iā€™m not feeling well, I canā€™t seem to kick this chronic tiredness, my head hurts often, Iā€™m still gaining weight that nothing can explain, but Iā€™m not going to give up… Ā Iā€™m praying for strength to keep pushing through and asking God to heal my whole body. I need Him to heal me for our whole family… Ā not just me. Itā€™s becoming super hard to see how much this is all effecting Cory and the kiddos; but thats for another post at another timešŸ˜‰

Please continue praying for our family and asking God to heal us.

Now, Go LIVE IT OUT!

XO, Sincerely Dani

My only hope is in YOU Ā Psalm 39:7

PS… Ā I have lots of pics to post to go with all these activities we did, but Iā€™m having some internet issuesšŸ˜¬. Iā€™ll do a picture blog post soon!

The GOOD. The BAD. The UGLY.

yayaya… Ā weā€™ve all head that saying before… Ā I know! Ā But I wanted to share my life with you. Today has been a super rough one. Ā This last month has been rough. Donā€™t get me wrong, weā€™ve had LOTS of good and joy in it all too. Somedays weā€™re having to try harder to find the good that others and somedays we want to throw in the towel (me todayšŸ˜¬)

MY GOOD:

Weā€™re seeing a lot of this country

Weā€™re together as a family

We are growing as a family in each new day

We have a truck and motorhome that run

We are saved by Gods grace

I could continue on and on and on really…

MY BAD:

Im sick

Ive had three ribs out for over a month now and Iā€™m in horrible pain

I canā€™t sleep with this pain

My ferretin levels are dropping each day as the Babesia bugs eat it as their sole food source

My migraines are increasing again

Im gaining a lot of weight suddenly with no reason and each pound is so discouraging

I hardly have enough hair to keep my extensions in

MY UGLY:

When Iā€™m this sleep deprived and in so much pain Iā€™m not a very patient or sweet wife or mommy

I need to cover my super silvery roots and take my extensions out… Ā they are about to fall out theyā€™re so longĀ (I donā€™t have enough energy to take them out, color my hair and put them back in… Ā Lucy helps me color and install them)

I am having extremely low self esteem between my weight, lack of hair, no energy to work out, and nothing fitting me

There is no funding for a cure for Babesia

There is no insurance coverage for any treatments to help keep me alive

We have to pay for everything up front with cash

Babesia will stop my heart unless we find a cure before then

We need help financially and are hoping that someday we could have insurance that would help to cover these costs so that we can get treatment faster! Ā Until then we hang onto the Hope we have in Jesus!

Thatā€™s a glimpse of just a portion of my days. Ā The reality is bleak and yet I know my God is bigger and greater and Iā€™m begging Him to heal me!

Thank you for your continued prayers, love and encouragement. Ā We need you all walking alongside us in this BeautyFULL Mess.

Live IT Out,

Sincerely, Dani