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!
After I dried my eyes for the last time of what seemed like a million… here is the post from my 11 year old beautiful on the inside and out, oldest daughter and true blessing of a friend… my Lucy Faith.
Please read and PLEASE share her post however you possibly can… we need awareness… we need funding… we need acknowledgement of this disease… we need better testing and treatment options… we need insurance coverage… we need Washington D.C. to hear us… we need the CDC to have opened eyes… we need the AMA to act on the fastest growing vector born disease in the world… PLEASE READ, SHARE AND PRAY!
From Lucy:
“Hi! My name is Lucy, and most of you may already know, but my mom had lyme’s disease, something caused by a tiny little tick. She also has some co-infections called Babesia, Bartonella, and many more.
This disease is horrible, everything about it. My mom had lyme for about 26 years and doctors could never diagnose her. Twice they told her that she had months left to live and apparently they were wrong, because…um… hello; to this day I have my mom! We had always known she had lots of heath issues… but we never knew what any of them were from. I spent lots of my time until I was about five year ago old up at OHSU and so many other doctors with my mom and brother. I’ve seen a lot of horrible things.
When we finally found out what my mom had, it brought in a lot of stress. I could see it in my moms eyes and it was written all over my daddy’s face… I cannot lie; I was scared.
One memory that really scared my heart was my moms first terrible pain episode. I remember we were all sitting on the couch and my mom had her headache that she had had for months at the time. All of the sudden she started to hunch over in pain, moan, shake, and do this uncontrollable jerking motion and then my daddy told us to go upstairs. This was scary, what was going on? Is she ok??? All this going through mind while I was upstairs with my frightened little sister who was almost half asleep and trying to comfort my crying brother. I did not cry, but I was so horrified nothing would come out of me. All of the sudden, and I will never forget the feeling… this blanket of peace came over me and it felt like God came and hugged me and then all His angels came and hugged me too! I felt so strong, like God said: “You can do this! You can be with your mom! And you can live like this! I put you here to take care of her!” So, I went down the stairs to where my dad was trying to take care of my mom as best as he could. But it was hard, none of us knew how to. For all we knew she was going to die… I sat next to my mom and I gave her a hug, and she told me, ‘’ Keep you’re eyes on Jesus and remember you’re life is in his hands.’’ Those words have stuck with me forever.
After a while, those nightly episodes became more regular. We knew how to take care of her, and what to expect. But watching my mom suffer like this was so terrible. Soon her body could not take the pain so she would pass out… but she would not breathe so we had to wake her up which can very hard… sometimes we would have to move her around, push on her chest or even slap her cheeks. It can be scary. I would pray and pray for no more of those episodes to happen but they just kept coming… This verse really related to what I was feeling.
Psalm 22:1 My God, My God, why have You forsaken me? Why are You so far from helping me and from the words I am groaning?
I felt so unanswered and I never knew what was going to happen. I have never really had bad dreams, but with everything going on it definitely caused some… I was dreaming about things like mom dying and my bed being full of ticks. I never wanted to leave my mom because I never knew what was going to happen.
Soon we could start to tell when she was going to have a bad pain episode, she would get a really bad headache, her neck would tighten up and then she would get terrible abdominal pain and that was just the start of many long painful nights. Usually she was on the couch the whole time, one time it was such terrible pain that she ended up on the floor, groaning. It is the worst thing to see, and no one should have to see that. Usually she could not control herself, the pain took over her body. Her fingers and eyes started to twitching and it drove her crazy she would say “Make it all stop!”, and then she would pass out. Me, my dad, and my brother would be running back and forth from the kitchen and pretty soon we had everything out that we needed to care for her. Sometimes we would try to prevent it from happening by giving her what she needed right when the pain would start, but even doing all we could to prevent it was not working at all…it was so terrible!!!! Sometimes after an episode we all got to eat ice cream! So in a way we also found joy after it was over and we celebrated making it through!!
I remember my moms last episode of the summer. It was on August 4 of 2016. I think that is a day my entire family will remember. It was the day before we flew out to the hospital in Germany! Even after Germany and the lyme being dead, the fight is still not over… Some people may think so, but it really is not. We are still going through a lot, detoxing, and killing co-infections because of all the snow in Bend it was extremely cold. The cold along with new medicines my mom was taking to kill the Babesia disease started my moms insane pain again on Christmas Eve. This continued for eight nights in a row, so we knew what we had to do. We up and left all our things, our family, our ranch and animals, all our Christmas presents and our own rooms and we booked one way tickets and flew to Hawaii in 48 hours. Since being in Hawaii, mom has had no bad episodes! But lots of pain… so even in the warmth we are still working hard to keep fighting, and we will keep going!
Exodus 14:14 ‘’The Lord will fight for you and you shall hold you’re peace.’’
It has been hard at times to stay strong and hold my peace, but through it all God has fought and provided for my family! I’m so thankful for the family I have!
Thank you to everyone who has supported and prayed for us! We really do appreciate it all so much!
Sincerely,
Lucy Faith Pratt ”
Thank you to everyone who has taken the time to hear my daughters heart… it is so hard for me to read these honest words and know the depth of her pains. I choose to be thankful for her strength, her reliance on God and her help in my times of need! Lucy, is an incredible blessing truly my right arm more times than not! “I love you Munch💚!”
This month is Lyme Disease Awareness month and I wanted to do share a few guest posts from the ones I love most. My goal in sharing these posts from family members is to help people see just how serious this disease is. I want everyone to realize how far it’s devastating effects go. I desperately want the World at large to see how this is nothing to brush off… this disease destroys peoples lives, their health, relationships, families, it claims self confidence, attacks joy and happiness, and claims the lives of wayyyyy too many people to count each year.
For us personally, it has recently robbed us of being able to live on our ranch in Bend and we are having to rent it out. It has taken our family away from family, friends, church, and community that we’ve known and loved our entire lives, it has cost hundreds of thousands of dollars, and more tear and pain filled nights for all five of us than I can possibly count.
We are beyond thankful that we homeschool and own our own business so that getting to warmth and lessening side effects could be an immediate reality for us… but we are in NO way at all in PARADISE. It is warm here and we do love the ocean and sand. But, I would ask you all to realize that my kiddos unwrapped Christmas gifts on Christmas morning, played with their new gifts for a few short days and then in an emergent state… we up and left everything they played with, all their animals, their grandparents, cousins, youthgroup, awana club, airsoft club, 4-H clubs, their space, land, playset, basketball hoop, etc… we flew here with suitcases of clothing, toiletries, two suitcases of medicines, prescriptions, a vitamix and a pressure cooker. We have been tossed between 4 homes, apartments, studios, and townhomes. We have not had a place to call home for more than six weeks at a time, and our rent is horrendous. Our stress level with finances and trying to find our next rental starting June 15th are at an all time high and all that Cory ever has time to do is WORK (which we are beyond thankful for… but I cannot remember a time that we could leave the cell phone at home and have some precious family time!)!
Please don’t stop praying for us, for healing, for wisdom, please pray for our kiddos hearts to be protected, pray that they would have things to do and not be too bored (this is a HUGE shock to them as we usually have 10 acres and endless activities to run around and do at home.), Please don’t just think that we are great now that we are in Hawaii… we want to expect the best and continue to pray for complete healing, but we NEED others to care and stick with us more than you may ever know!
We are and will continue to always seek the sunny side of things in this storm. We have to continue to count our blessings when it feels like the days stuck in bed, and the immense pain filled days where kiddos cannot get outside because their mom is stuck in bed hurting so badly are endless.
Thank you to each of you for following along and praying for our family.
We love you.
We need you.
Tomorrow is a new day and I am praying for a fresh day with NO pain at all!!! My oldest daughter Lucy has the first of the guest blog posts… and boy-oh-boy can that girlie write. We are all in for a treat, and I cannot wait to read it tonight!
Stay tuned!
XO,
Sincerely, Dani
Psalm 46:1-3
God is our refuge and strength, an ever-present help in trouble.
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.
Nashelle Warrior Mother’s Day Edition: Danielle Pratt
April 24, 2017
Each year, Nashelle Jewelry selects two recipients for the Nashelle Warrior Campaign. Nashelle Warriors are inspirational individuals from the Bend, Oregon community who are currently facing extenuating medical challenges. The campaign is designed to raise money to help support the recipient’s medical expenses. 100% of the net proceeds from the jewelry are contributing to the family’s ongoing medical expenses. Today, we want to highlight one of our 2017 Warrior Recipients, mom, Danielle Pratt with some questions about her battle with Lyme Disease and being a mother to her three children.
1. What is your day to day life like living with Lyme Disease? What happens on a typical day?
My day to day life actually varies. Some days I wake in so much pain that I cannot move my limbs, other days I can get up and move but just simply showering exhausts me enough that I have to go back to bed for a few hours. Each day presents itself with new issues… some days I can’t move my neck, today my back seized up and I could not bend it and was in horrible pain. I often have days that I cannot speak what my thoughts want. I stutter for a long time before some words form and then I say something all jumbled up, I have no short term memory, my hair has not grown in 9 years now and is all falling out (I’ve traded my friend photography for extensions for the last 8 years. ). I cannot remember the last time I did not have a migraine or severe pains and cramps in my neck.
I am now struggling with being very low emotionally. This is a new part of this disease for me, and it is very overwhelming and discouraging.
And to top this all off, I watch my kiddos get worse and their own personal Lyme Disease symptoms increase or new ones develop each day.
In this mess I also home school a 1st, 6th, and 7th grader, often times from my bed if I cannot move. I try to make meals for my family and rely heavily upon my kiddos and hubby for help with these. I do manage to get our kiddos to and from sports pretty well if I can get myself into the car!
2. How has the disease impacted your family and your ability to be a mom?
This disease has cost us over 3/4 of a million dollars and two homes. We cannot have insurance coverage for any treatments, and have sacrificed so much to be able to pay out of pocket for the last 26 years to treat my health issues.
I began having such severe pain episodes each night starting late December. My husband and kiddos would have to slap my face, palpitate my chest and shock me to begin breathing again. I would come back to being coherent and would see my children and husband or parents in tears, saying they thought I was going to die, and seeing utter fear on their faces. Because of this emergency at hand, my parents bought us one way tickets to Hawaii where we have some family as well and we up and left everything we knew 48 hours later. Our kids left all their animals, their Christmas gifts, their friends, youth group, church, family, and our ranch. This disease has continually ripped everything out of our grasps, but the five of us are continuing to fight together fiercely for the life we long to live! We cannot go home until it’s at least 70* and so that means that we are stuck here on the island, where even though it’s beautiful. The painful disease is still here… just not as intense. It is a financial struggle to afford housing, and bills on top of all of my health and medical expenses each day!
I have so much mommy guilt because of all that my kids eyes have had to see and all my tears. Their ears have heard doctors say that I am dying and that I had months to live. Their hearts have been so heavy for as long as hey can remember with all my pain and sickness. I just want them to be able to be kiddos, have joy and not so much stress all the time.
3. What do you hope your future looks likes?
I hope for way less stress financially. I want more time spent with our family filled with laughter and brighter smiles and joy filled eyes. I cannot remember times not weighed down so much by the vast stresses of life.
4. What advice to you have to give to other moms who have Lyme Disease?
I would tell other moms to not give up though you feel all alone. I would tell them that they are doing an incredible job even if they can only get dressed for the day, they are not failures, that they are warriors. To live every day to its fullest in that moments abilities and to not be too hard on themselves!
5. Anything else you want to share about your journey and anything related to being a mom?
I would just encourage everyone to “Live It Out”. Whatever it is that you get to walk through in this life we’ve been given… do your very best with it. I truly believe that God chose me to walk this path, He could stop this in our lives and I pray He does each day. He could and can heal us, but whether He does or not. I want to be a vessel that is used for His glory. This story is His and at the end of the day or the end of my life, what matters is what I do with this gift of life that God has given me. I want to encourage others to give their stories and journeys and battles back to Him… to “Live It Out”!
To read more about Danielle and her life with Lyme Disease, head over to her blog: BeautyFull Mess.
A HUGE thank you to the amazing Nashelle team for their constant support, love and encouragement! We are beyond blessed by their time spent devoting this blog post to our family in this fight. Here is the actual link to their blog: http://nashelle.com/blog/nashelle-warrior-mothers-day-edition-danielle-pratt/
Happy Thursday y’all! I have been answering loads of questions about our future plans, people asking when we can return home, others stating that since we’re in a tropical place… I am suddenly all better, and countless others still trying to wrap their minds around these nasty diseases that our family is dealing with day in and day out.
I am hoping to help shed some more light on some of the ways to best understand what Lyme Disease does to a person. What it looks like and how that can change from day to day. What all Lyme Disease can affect in a body. What it manipulates, etc… I will be answering some of the other questions about future plans, coming home, and how we are NOT all better just because the pics of stunning ocean waters and palm trees are indeed STUNNING… but for now, I wanted to simply share another blog post I found a while back about how to best understand others that are living with Chronic or long-term Lyme Disease and/ or it’s nasty co-infections.
Please continue to pray. I have started new meds this week.
XO
Sincerely, Dani
(full link below)
The article is as follows:
”
Understanding Lyme Disease
It’s hard enough to understand what others are going through, unless we have walked in their shoes. But, imagine trying to explain your illness, when you don’t completely understand it yourself. Lyme Disease is complicated on its own. But, when it’s chronic…or, long term, it ramps up the complexity of understanding it. A person living with Chronic Lyme Disease often has good days interjected with bad, and it’s not always visible to outsiders. So we thought about it and came up with 8 tips in understanding Lyme Disease patients and what it’s like to be one.
#1 They Are Not Intellectually Lazy
If you know someone with Chronic Lyme Disease, then you might have noticed during conversations that their natural ability to articulate perhaps has diminished at times. Maybe you have noticed they are not able to remember an event or conversation from the past. It’s not only frustrating for you, but it is for them as well. Please don’t jump to the conclusion that they are simply not trying. Some people with Chronic Lyme Disease have the proof in their brain scans, as more and more white matter develops. Not all, but some Lyme patients have infections that pass the blood-brain barrier, causing dementia, epilepsy, myelin degeneration and other degenerative neural conditions. When someones nervous system is under attack it can cause them to behave a lil loopy, but they can’t really control it. Some days, inflammation is low, their minds are clear, and they feel like the luckiest people alive. Talk to Chronic Lyme Disease patients on these and you will get a glimpse of who they can become full-time if and when they find the right treatment protocol in a world where they have very little guidance and answer from the medical community just yet.
#2 It’s Not Them – It’s The Disease
Just like an unexpected breakup, it’s entirely possible that your affected loved one appears to be brushing you off, pulling away from you and all your attempts to get together. Don’t take it personal. Imagine living with an influx of intense pain and a diminished mental state, which is all unpredictable. Imagine how embarrassing it is to stutter because suddenly you are tongue-tied on an hourly basis. When living with this disease, a person is exhausted, both physically and emotionally. It’s a constant battle to understand it themselves. So, it’s unlikely you will either, for a quite a while. But, reading up on it, and their daily struggles, is a good start. Don’t give up on them! They are not breaking up with you. They are struggling with simple things we often take for granted. The most amazing friends are those who feel concern and compassion for us before they feel offense and hostility.
#3 Lyme Is An Invisible Disease
Chronic Lyme Disease is often hard to detect by medical professionals, and nearly impossible to notice from the non-medical population. It’s like watching someone get out of a car who just snagged a handicap parking spot, yet seems to walk away without incident. You have no idea though, if that person is suffering with an invisible disease, such as heart failure. If your friend or family member has Lyme Disease, but appears healthy, be happy for them. Please don’t make them feel guilty, just because they wear it well.
#4 It Might Be Hard For You, Too
There are many ways to help someone who is living with Lyme Disease, such as running errands, hanging out, shopping for them, and more. You might offer to take them out eat. But, you should know that diet is very important to a person living with Lyme Disease. While it’s a kind gesture to offer dinner…and one you still can offer, be aware that they need to stay away from gluten, sugar, dairy, or whatever else they have eliminated. Their dietary choices may not be the best choices, but they are trying them out of desperation to feel better and it is nice to respect other’s discipline. It’s critical that they keep their immune systems healthy and stable, and foods play a role. So, if you want to help with meals, great! But, read up a little on Lyme Disease diets (and ask them) before preheating your oven.
#5 Dropping Out of Life Stinks
I recently met a cop who had to quit his job when he got sick with Lyme. He was a tough and dutiful civil servant who had been through a lot in his career and loved what he did, but after years of trying to keep his job he had to give it up due to his degenerating state. Imagine holding down a traditional job, or cramming for exams, when you can’t even hold a decent conversation on many days…days that you can’t predict. Next, imagine the stress that school and jobs often bring a healthy person who doesn’t also have their mortality on their mind. So, if they leave a job, or school, don’t judge. It might be temporary, and it might not be. But, I would dare bet that they would rather hold down even a monotonous job, than live with Lyme Disease.
#6 They’re In It for the Long Haul, Most Likely
Contrary to what some people believe, Chronic Lyme Disease is not a simple virus that will be gone in a week or two of antibiotics. In best-case-scenarios, it will often take a few weeks of antibiotics before a patient will feel better. However, those are the lucky ones. It often goes misdiagnosed, which leads to delayed treatment, and symptoms increase due to the disease working overtime within their system. Lyme Disease is also known as “the great imitator”, as it mimics so many other illnesses and conditions. The longer it goes undetected, the harder it is to treat. So, it could take years before they repair the physical damage. Patience is tested, for sure. And, not just theirs, but also those around them.
#7 The Mockery of Treatment
Similar to how chemotherapy treatments make a cancer patient feel awful, treatment for Lyme Disease can also wreak havoc on a person’s well-being when endotoxins are released while being treated. It’s called the “herxheimer reaction”, and can occur within just a few days after starting antibiotics. A patient’s symptoms increase, and can lead to extreme discomfort. Herx’s are potential a good sign (and potentially not), because they indicate that treatment is working. But, that’s a tough sell to someone who is physically going through it. Their body goes into overdrive to fend off the sudden flood of extra toxins. Fortunately, the herxheimer reaction is temporary, but still can last at least few weeks.
#8 The Multitude of Moods of Lyme
You might notice that your loved one is a bit more moody than normal. One day might be filled with laughter and smiles. Then, the next, they are withdrawn and emotional. This isn’t unusual with Lyme Disease patients. And, while you might suspect that it’s all due to the emotional stress of being sick, there’s more to it than that. Their body has been biologically altered, with toxins from the disease and from adverse drug reactions running rampant. However, once the toxins are better controlled, the emotional roller-coaster could lessen as well.
Hopefully the information above will help you in understanding what a Chronic Lyme Disease patient’s daily life is like, and give you the power to help in ways you didn’t know were needed or appreciated.”
It is almost Easter and we have been getting settled into our new “home” for now. Thankful to have soooooo much more room to use, couches to sit on and a table to all eat dinner together again… it’s the little things sometimes, ya know?!
I had a doctors appt two days ago and we are having to switch up treatment plans and try new medications. I abruptly went off my last two medications as the stomach pain, cramping in my stomach and back, head sweats, fevers, and more were more than I could handle. They often got so bad that I would crumble to the ground or have to brace myself upright when the pain hit. I will start new meds today and continue detoxing at the same time of course to flush out toxins released as any disease is killed.
I am now dealing with very, very, very low emotions. I have not dealt with this in the past, but maybe once or twice and nothing even close to how I am feeling now. Even though I know this is a very common side effect with Babesia… countless lives are actually lost to this disease due to depression leading to suicide each year; I am trying to remain optimistic and positive that these feelings will pass. I continue to try to go directly to God’s promises and remember who He says I am, but in being honest with you… I am not doing well at all.
I also have severe neck pain. Again, very common when on these meds. This pain is so much that it keeps me from sleeping. Cory is continually rubbing this area and it helps temporarily, but I need it to go away and finally have some relief from it and the migraines that are plaguing me constantly.
Soooo… those are some prayers we have along with complete healing. All three of our kiddos are struggling with some new symptoms, and some much increased symptoms and it’s so hard to watch how each day this disease destroys.
Prayers:
-Healing
-Energy
-No more pain
-Neurologic symptoms to be gone
-New protocol to work
-Direction of our Future
-Wisdom in treatment
Praises:
-More space in this new home
-Dr. Flattery is willing to try a new direction
-Grace from Jesus for all the ways I feel like I continue falling short in parenting and wife-ing!
Happy Easter to each of you and your sweet families… we are excited to celebrate our Savior being Risen this weekend and every day!
Matthew 28:6- He is not here; He has risen, just as He said.
Isaiah 25:8- He will swallow up death in victory; and the Lord God will wipe away tears from off all faces.
Job 19:25- “As for me, I know that my Redeemer lives, and at the last He will take His stand on the earth.”
I’ve been singing this over and over in my head lately:
I’m finally writing this and asking for prayers! We’ve had a few rough weeks, kiddos have been very sick with UTIs, bronchitis, ear infections, and sinus infections. I’ve been in and out of urgent care with severe stomach pains, among other things.
Our kiddos are on the mend and I’m so thankful that this is coming to an end soon. However, I am super weak, and more fatigued than I’ve been in a really long time. My ferretin is still on the decline and I’ve been confined to bed more than I’d like😬
At urgent care, though both doctors were very kind… they both had to look up what Babesia was. Then they returned to the room to tell me that though they believe in Lyme Disease and it’s co-infections, that they are not familiar with the diseases, how they manifest, how they are treated, etc… once they see my lab work they are sooooo alarmed and want to run a gazillion tests, and start highly recommending that I find another doctor to treat me. They could not have been more kind, but it is so quickly obvious that they don’t want to touch me with a ten foot pole😩
These experiences are exhausting and frequent. When I’m already this weak, dealing with this extra is so hard. Please pray for my meds to begin working and my ferretin to increase when enough of these bugs are killed off and not eating the ferretin!
🙏🏼Please pray for energy to walk and do things with the kids. Please pray that we feel well enough for our next move across the island this Saturday into a bigger space… we’ve been in 450 square feet and we will go from one bedroom to three😵
Thank you for reading and sticking with our family in these rough times… we are so hopeful for GOOD ahead soon!
XO
Sincerely, Dani
Hayden and Lucy are paddling with Lanikai and ❤it!
Grey is hoping to start hula soon… she’s all dressed for the part!
Corys parents were here and we enjoyed some fun times with them… here’s a pic from our last dinner we shared at our fave place!
I just finished tucking the kiddos in tonight, and I am sitting next to them on my bed starting to write this post. I’m missing Cory madly as he’s been gone on the mainland back home in Bend for over a week working on Lone Mill as well as working tirelessly on our home so that it is ready for whatever is next.
I’ve been reminded today to pack light and love heavy. I’ll tell you that I never ever expected to have to leave all our things, all our people, all our animals, and all our comforts so suddenly… but good has come from it for sure. It is the only way that I have ever found to SLOW DOWN! We instantly left our crazy schedules, kiddos and I dropped all commitments, we couldn’t say yes to anything else… and for someone who didn’t know how to say no, this is not a place I thought I’d ever be able to be at.
We had to pack light… we came with 6 checked bags and our carry ons. We don’t have too much clutter (yet).
We are able to love heavy… we have eachother and I am fighting fiercely for beauty-full family times. We jumped into an amazing church family that has embraced us, they check on us, they include us, they are messy humans just like we are… but they are truly living out being the “hands and feet of Christ”. We have been able to start spending time with Great Auntie Joan over here each week and we all sure love her. We get lots of time with my brother Joel and his sweet girl Ally… they are here for us and have dropped everything at times that we needed help. Just tonight, we had a lovely dinner with Cory’s parents who are visiting for a few weeks and an aunt and uncle too.
I am learning to make my YES matter, to not commit to too much, to love richly, to enjoy moments, and to not be sooooo hard on myself.
This isn’t where I thought our 2017 would have us. We truly miss seeing faces of our family in Bend and our friends too. We miss Jake our dog and Max and Harvey, Sergeant, and Huck (the other animals), I miss having a home and my bed, but we are choosing to find the beauty in this mess and when we really stop to count the blessings it is so full of beauty!
Please continue praying for:
Direction with our home/ ranch in Bend
Being able to afford a place here to call home for now
Severe Stomach pains to go away
Constant migraines to go away
Safe return to Oahu for Cory and sooooooon!
Finances for medical expenses and housing
HEALING
Praises for:
Cory getting home safely and his super hard work
Kiddos that are just taking this in stride
A roof over our heads
Friends
No Seizures
Less pain than at home
Live It OUT
Pack Light and Love Heavy!
Sincerely, Dani
Isaiah 40:29 He gives strength to the weary and increases the power of the weak.
Matthew 5:37 Let your yes mean yes, and your no mean no. Anything more than this comes from the evil one.
Many people are asking what is next? Where we are? When we are coming back home?… all these answers are still hard for us to come up with. We are trying to figure out what is next, we are still here in Hawaii, and we wish we knew when we’d be coming back home.
There are no simple answers right now. What we do know is that the cold was the reason my extreme pain was set into having seizures. We know that since coming to Hawaii I have not had one single seizure. I am still experiencing lots of pain, migraines, major neurological symptoms, and I am barely getting any sleep. However… given the seizures being gone, the fear of our nights turning into horrible pain and seizure episodes on the kiddos faces slowly fading, Cory realizing that does NOT have to be our normal over here, all make me feel like there is no reason to even complain about the other symptoms at all!
We need to find a short term solution to our property/home in Bend so that we can afford to rent a place over here (we thought prices in Bend were high!? LOL). So… if any of you know of someone who is needing a short term, furnished to the hilt, beautiful large home just minutes from town and yet so private and secluded… please send them our way ASAP!
I am continuing to take very strong antibiotics, antiparasitics, a gazillion pre and probiotics, detoxes in every way possible, and I am doing my darndest to stay very, very warm at all times. (much easier over here than in Bend’s snow… but believe it or not, Hawaii does indeed have a winter season as well. We have had many cooler days, gobs of rain and I literally snuggle under a heated blanket even here to keep the seizures away!)
We are weary of the constant battles we’ve been facing. We won’t give up… instead, we will rest our weary souls in Him!
Please pray for these things:
Complete healing in my body.
No more pain in my stomach
No more migraines
Sleep Sleep Sleep
Lucy has been sick with a bad cough for almost 3 weeks now
We need housing
We need our home in Bend to be rented out ASAP
Cory will be leaving us here to go home and pack up our personal items so the house can be rented out right away
Wisdom for health and housing decisions
And… a huge prayer request for our family who just lost my cousin to a snowmobile accident. He left huge holes in the hearts of his wife Amy, his brother Jeff, his mom Candy, and all of us who loved him soooooo much! Cole loved Jesus with his whole heart and is out of pain here on this earth now… but the sting left to those who loved him here is immense.
We are praising God for:
The ability to be here at all
No seizures since arriving
Less stress about how each night will end
and that His mercies are new each morning… His faithfulness is so GREAT!
We love you all and are soooo thankful for your continued love, support and prayers!
Keep on Living IT Out!
XO
Sincerely, Dani
Lucy is loving surfing and getting pretty good at it too!
Grey is still our happy little one! You’d think all three of them were born here as they just seem to fit right into everyday life!
Hayden is quite the surfer these days! He pretty much lives for the day after school and housework is done… he’s addicted and is so fun to watch!
Once again, it has been too long since my last post… but this time there is finally a good reason for the time gone by. On December 23rd after beginning some new and very strong medicines to fight off this horrible disease “babesia”, I began having insane bouts of pain in my head and stomach which led to a long night of seizure episodes. These seizures and horrific pain nights became a daily/ nightly occurrence and each night I became more and more weak and less able to fight through the pain. After a few nights in a row of too many tears to count, having to be “jaw thrusted” so that my breathing would start again countless times, my left eye twitching to the point of being very achy, my right hand and arm convulsing so much that it completely cramped up, and amounts of pain that I have no words to describe… I found myself going through these nights without tears and with no fight left in me. I hadn’t given up, I was just so exhausted from the pain and the work that it takes to make it through each night. I told my mom at one point that “I had no more tears to cry.”
Bend has been having some very, very extreme cold weather this season and I was noticing that each time I was outside even for just a short time, my joints would begin to seize up. My knees and back were the worst by far and it was debilitating for sure. But what was worse is that these spots in my head along with my neck would tighten up so much immediately when I got cold and then these tightened spots would knot up resulting in the severe pain each day that led straight to seizures. I was having anywhere from 12-30 seizures EACH and EVERY night. One day, these started at 4pm which means that it was no longer possible to hide what was going on in my body from Grey. In the past these would not start until about 8pm… so she was naive to this and I wanted it that way. It absolutely broke my heart to see her sweet face as she would hide, cry, and be so afraid. And it broke her little six year old heart to watch her mommy writhing in pain, crying, and fighting with all I had.
Cory and I knew that these episodes were definitely onset by the cold and some by the medicine that was new to my body too. We had to find a way to get out of the cold quickly if there was ANY chance, even a small one that these episodes could be lessened. Thankfully, Cory’s family is from Hawaii and has a home that is being remodeled and we are able to stay here for a little bit before it becomes a rental property. My parents literally bought us one way tickets over here and less than 48 hours later we hopped on a plane and made our way to warmth. Praying the entire flight that this would in fact work… we were DESPERATE for relief… all of us needed just a glimpse of hope!
Well… we made it after 21 hours of travel, over 6 hours of delays, etc… and God has been answering prayers. I have not had any seizures since arriving in Hawaii. It is winter over here too… which means there are some cooler days. I got pretty cool a few days ago and never recovered and that night was full of really bad pain, but thankfully no seizures. It seems that my body is very, very sensitive to the cold, so overall this is a great place to be.
Beach time!
I am beyond thankful for the relief. Thankful that there is a home we can crash at. Thankful for plane tickets. Thankful for my brothers vehicle over here. Thankful for a doctor who will treat me long distance. Thankful I homeschool the kiddos and we haven’t had to skip a beat. Thankful that Cory works for himself and is portable. Sooooo very thankful for less fear on our kiddos faces, less stress on Cory each night, and less pain and no seizures for me!!!
Please pray for:
-wisdom for our next steps
-seizures to stay away
-pain to continue getting better
-lots of work for Cory… we still have all our bills at home and lots of new here
-friends over here
-complete healing for all five of us
God is good all the time and I am excited to see what He has for our family in 2017. Thank you for your continued support, prayers, and love on our family.
“Live It Out”
Sincerely, Dani
XO
Creative Writing, and History on the beach today!
My bro and his sweet girlfriend made us an amazing homemade dinner… it was delicious! Thanks Joel and Ally!
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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.
Grey is hoping to start hula soon… she’s all dressed for the part!
