Category Archives: Lyme Disease

Let’s Start Over… at the Beginning

January 17, 2020 7:54 pm , Leave a Comment ,

Let’s start back at the beginning… that’s where our new friend Chris Lockwood took us back to. Our entire family was full of loads of mixed emotions. Mostly excited, though I was sooooo nervous to be recorded, to try to have all the answers to who knows what questions will be asked and at what moment, and the list of why I couldn’t do this podcast went on and on and on again… but I’ve known deep down for the last almost 10 years or so that speaking about God’s story in our lives is exactly what He wants me to do. I have doubted that I’m ready, that anyone wants or needs to hear more about anything I have to share, I have made excuses about every part of all of it, and I’ve also used real problems that are not excuses about not writing, being on podcasts or speaking in public. It’s true that somedays I cannot formulate words or complete sentences well. I used to be able to articulate well in my speaking, I was a poet, I loved to write and I believe I will again one day soon. But I have used ALL of that and more to excuse my way out of the very thing that God has asked me to do… and that is wrong. I knew in my gut when Chris’ wife Joy asked me what I thought about it that I had to finally face my fears, my shortfalls, and shortcomings, and all of it and just go for it!

I am so blessed that Chris was patient with Cory and me. And we are all blessed that this couple saw Jesus in our story. They saw something worth talking about and quite honestly… we often feel like its just not worth sharing or talking about at all anymore. We feel like those who may have started walking this battle with us, both family and friends alike are tired of hearing about it, and trust us… we are too! We are so weary and lonely and just simply having a hard time putting one foot in front of the next each day right now.

WE NEED YOU… thank you for staying the course alongside us!

Sooooo, here it is finally! Part One of our story on the “I am Chris Lockwood” podcast! Please give it a listen! It’s long… I know… but how do you cram 30 years into anything less? And next week will be the second half that screams more HOPE… There is so much HOPE in this battle!

I can’t wait to hear what you think!

Live IT Out

Sincerely, Dani

Connect with Chris:

Chris on Apple Podcast
Chris on Spotify Podcast
instagram.com/iamchrislockwood
www.facebook.com/ChrisLockwoodPodcast
 www.twitter.com/iamclockwood
 www.iamchrislockwood.com

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

Weary, yet HOPEFUL!

January 12, 2020 11:25 pm , 4 Comments ,

Here we are again… back on the island of Oahu… running from a disease that has no known cure. Running from Babesia Duncani, a co-infection of the Lyme Disease that we’ve fought and beat.

I now live in a body that is like living in a home without a working thermostat. My body doesn’t regulate my body temperature well and the cold builds up in my bones and flesh to a point that the pain it causes overtakes my entire body causing what look and seem like seizures.

My doctor cautioned us that if we stayed in the cold and let my body face these severe pain and seizure like episodes again… I might not make it through them this time around. These have happened so much over the last few years off and on. They have really worn me down and caused lots of fatigue and taken their tole on me physically.

So, we found ourselves having to run AGAIN. We landed on island just before Thanksgiving 2019 and are in the middle of our third move in the last month and a half since arriving. We’ve been so blessed to have spaces to land temporarily and are HOPING to be able to stay in this next spot until we find a home to purchase and be able to call ours in Kailua, Oahu for part of each year to get me out of the cold safely.

All three kiddos are back to paddling and start regattas this coming weekend. Our teens hopped right back into their Highschool youthgroup and were so blessed to be welcomed by friends and youth staff and pastors. School is super intense and they haven’t missed one single day even during our packing, moving and traveling… we’re pressing onto the finish line with Liberty University and thankful for its portability during all of this craziness!

Cory is diligently plugging away and working like a maniac to keep us all afloat. We are needing to find new clients and grow Lone Mill… so, if y’all know of anyone needing the best web development out there… LET ME KNOW!!!

I am feeling pretty darn good other than being SUPER DUPER fatigued and sleepy… likely due to too much stress for far too long. I have some new treatments to fill y’all in on… that’s going to need a few more posts of it’s own though, but I’m so excited to share this life changing news with you soon!

That’s pretty much a wrap for us… we’re beyond weary, but HOPEFUL!

  • We’re hopeful for full healing of my body.
  • We’re hopeful for financial healing as this has taken so much financially for so long.
  • We’re hopeful for financial healing as this has taken so much financially for so long.
  • We’re hopeful for rest… for body, mind, and our hearts.
  • We’re hopeful for newness.

We’re resting in Jesus… keeping our eyes on Him alone and putting all our hope in Him!

Thank you each for following along, for praying for us and for cheering us on! We NEED each of you and your friendships… stay with us as it helps us feel much less alone as we’re very lonely AGAIN!

HOPEFUL in this BeautyFULL mess! Thankful He’s not finished yet!

Live IT Out Friends…

Sincerely, Dani

Proverbs 18:10 The name of the Lord is a strong tower; the righteous run into it and are safe.

Nehemiah 8:10 Do not grieve, for the joy of the Lord is your strength.

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Exodus 15:2 The Lord is my strength and my song; he has given me victory. This is my God, and I will praise him—  my father’s God, and I will exalt him!

Psalm 9:9-10 The Lord is a refuge for the oppressed, a stronghold in times of trouble.

Psalm 34:10b Those who seek the Lord lack no good thing.

Isaiah 26: 3-4 Those of steadfast mind you keep in peace—because they trust in you. Trust in the Lord forever, for in the Lord God you have an everlasting rock.

1 Chronicles 16:11  Seek the LORD and his strength;  seek his presence continually!

Psalm 32:7-8 You are my hiding place; you will protect me from trouble and surround me with songs of deliverance.

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

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 is coming… I promise!😉

July 9, 2018 8:17 pm , Leave a Comment ,

Beyond blessed to have had my momma by my side for this last IV IG…  12 hours of an intense IV. This is our new monthly routine and she’s with me through each one, loving on our family, filling in the gaps, and giving selflessly! 

Please keep praying for total healing, that these IVs would be effective, that my body would start creating its own antibodies, for us to find and be able to buy a home, and for finances in all aspects of life…  we have over $13,000.00 each month just in medical expenses on me alone and are weary… This battle is taxing, but not bigger than our GREAT GOD!🙏🏼😉.

Full update soon, we promise!

XO

Sincerely, Dani

“Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.”

Hebrews 4:16

#beautyfullmess #lymediseaseawareness #homeiswheremyfamis #liveitout #givemejesusandtheocean #babesiabites #offtokillbabesia #wefightonourknees2018 #grammyshere #5prattsansapooch

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

We’re HOME…. at last!

May 24, 2018 11:53 pm , 2 Comments ,

We’re HOME!!!

We’ve actually been home for about a week… but we needed to have time to settle in, figure out what our new normal would look like, and be with our kiddos who were beyond amazing while their parents were in a foreign country for six weeks.  We surprised them last Sunday (which happened to also be Mommy’s Day… double yay for me!)… they woke up to text messages saying we were in the air and would need a ride from the airport in a few hours.  Though we did enjoy the surprise, it was out of pure necessity that we couldn’t tell them because we didn’t know if/ when I would actually get to go home.

Have I mentioned how much I LOVE this kiddo???

Man… I missed this creative little love bug!

This beauty had our home all decorated with flowers! She’s simply the best!

Felt AMAZING to be home!

Hayden already had a Luchidor mask… but we found him this awesome kite to match!

Tear stained cheeks for me as I finally hug and hold my babies!

And I actually felt good enough for a brief walk to the beach! Praise God!

I had to drink massive amounts of water to thin my blood, take Advil, and wear these lovely things… oh the beauties of flying home after all these treatments!🤪

We were exhausted… had to stay overnight in LA and then up at 4 am to catch our flight home… but this is the pic our kiddos woke up to saying we were on our way home and needing a ride in a few hours!💘😍

Here’s the wrap up of our trip and treatment:

Towards the end of our treatment time in Mexico we had to figure out the pain in my back and after the MRI, we saw two protruding discs very low in my spine…  we knew that we would be facing surgery soon, but Dr. Morales saw strong potential for me to receive PRP (platelet rich plasma) injections into those areas of my spine instead of surgery.  We planned an early morning platelet extraction with the Chemist- Enrique and then waited a couple days while the extraction was completed in the lab.  I received two intense (and horrendously painful as my body doesn’t receive anesthetic well or quickly EVER) treatments.  Each treatment included ten anesthetic shots to the five areas to be injected and then the 15 HUGE injections began.  Though this was horribly painful, I am sooooo thankful that the doctor has such an amazing and tight knit group of specialists available at a moments notice to perform these treatments and that we were able to get them done just before I was finished with all the other treatments.

This clinic was and is AMAZING.  I received more treatments and such incredible care from the staff from the beginning to the end and honestly felt like I was in the best hands for defeating this disease and all of it’s co-infections.  We are confident that all the disease has been killed off in my body, and yet we are home with a HUGE 6 month detox program which includes an intensive 4 month antibiotic course to follow the amount of time red blood cells take to regenerate.  We have a long and possibly at times uphill battle ahead of us with recovery, but we are optimistic that with letting my body rest and recover as needed; we will beat this… all of this… and find out what our new normal looks like.

I will write more on what our everyday looks like these days, what we need, and how people can best help!

Thank you for keeping us in your prayers and praises!

Prayers:

Complete healing

My new red blood cells to be created in my body disease free

For a disease free bone marrow

For my hair to quit falling out and thinning from the 8 rounds of low-dose chemo

Energy to at least go on one walk each day

Praises:

For safe travels

Kiddos who were soooooo tough and amazing for all those long weeks

Grandparents who LOVED on them endlessly and selflessly for us

Successful treatment

For a strong as could be and built up body from all the treatments in Hawaii before Mexico

For all the meals you provided while my daddy was here with the kiddos

Live IT Out,

XO, Dani

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

Last Lonnnngggggg Plasmapheresis Treatment!

May 10, 2018 9:34 am , Leave a Comment ,

My last longggggg plasma treatment is about to begin. This is pretty darn hard on me and I’d love prayers for it to go smoothly and clean out the last of the bad stuff… our day yesterday had to be changed up dramatically and today is one that is beyond full and all treatments are extremely needed!

As soon as my plasmapheresis treatment is over, I’ll begin my IV IG again and this treatment, though extremely necessary, comes with its serious risks too.  We will be running this drip extremely slowly to know if there are any poor reactions at all and to make sure I handle it well for the upcoming months of treatment with IV IG.  This treatment alone is $10k for just this one treatment, and we’re praying this is a HUGE turn around point in my overall, everyday feeling and energy.

Then to wrap up our long day here we will receive all my normal shots, IVs, and PRP into my protruding discs low in my spine!!!  We’re also praying this helps tremendously and keeps me from having all this horrible back pain!  I’ll be doing these injections for the next three days and I’m excited and nervous all at once!

Bring on the long days and let’s get home to those babies!!!!  Cannot wait to squeeze them and have goofy times with them at my side so soon!

XO,  Dani

LIVE IT OUT…   missing these girlies and Hayden too!❤️

 

Posted in: Babesia, God, Health, 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