Wow! I knew that Lyme was all over. I knew wholeheartedly that it was here on the West Coast, and without a doubt in Bend, Oregon… But to hear over a hundred personal stories from people in the last two days has blown my mind. Not the number itself, but the amount of people who have been so afraid to speak of it out loud. People who have expired doctor after doctor and feel hopeless.
Its for these people, my husband, our three kiddos, diseased friends whom I’ve met at the doctors office, and myself that I cannot stop sharing, talking, blogging, and won’t stop fighting for health, answers, and a voice for a disease that makes so many feel alone and isolated. This disease desires to break you down so much that you have no fight left in you, it drives you to severe depression, it eats at your brain, it causes aches so deep you can’t walk, impaires hearing, sight, breathing, memory, heart rhythms, causes seizures, pain like I’ve never known I could feel, and a constant migraine that grates on you so much that daily life is never the same. We have to keep fighting for funding, acknowledgement, and answers!
Please continue sharing these posts, please pray for all these people that have reached out, please help our family financially so that we can be healthy enough to make waves and fight on for all of those that cannot fight for themselves…
I didn’t post yesterday, but yet so much has happened. Yesterday, I started my Heavy Metals Testing and Treatment. This is supposed to onset 48 hours of flu like symptoms… but I have not felt sick like that, only severely fatigued and weak. I also tested to see how I would handle high dose Vitamin C which I am supposed to begin this next week.
Cory’s initial test results came in and we have confirmation that he too has Chronic Lyme Disease. He will begin intensive treatment Monday and will be at the doctor every day like me. We knew that Lyme could be sexually transmitted and transmitted in utero as well. We were very aware that it was quite possible that Cory and all three kiddos have Lyme and co-infections… but that was a hard afternoon for me having finality that indeed I had given this to my best friend and kiddos. Thank God we are on the road to healing… it honestly cannot get here quickly enough and yet we have so much pre-Germany treatment to accomplish before we go too!
As soon as I got in the car to head home from the Doctors office, our local news station called me and asked if they could come out to our home and interview our family. As much as I don’t like being in front of a video camera… this is exciting and we pray that it sheds light on this awful disease, opens physicians eyes as well as the general public that Lyme IS on the West Coast, it is here in Bend, and it can be anywhere! We filmed yesterday evening and the story will air tonight, Friday July 15th at both 10pm and 11pm on Z21. You can also find it after it airs on their website: http://www.ktvz.com (Have grace on me… I was so very nervous!)
And then………. the celebrating began! Cory and I celebrated our 14th wedding anniversary yesterday! I was so thankful that I didn’t feel flu-ish so we could go out to dinner while my parents watched the kiddos! Cory and I will never forget this zany, crazy day celebrating us
Today has been a day off of me being at doctors, and I welcomed that! I took the kiddos to the dentist and then we went and spent some of the afternoon with their great aunts and great grandma. We came home in time to finish off the day with a good swim and soaked up the last of the day’s sunshine!
Soooooo many people have reached out and let us know they are praying alongside us, you have shared our story, and many have helped financially. All we can say is THANK YOU! We need the help and you are each such a blessing! Please help us share our fundraising page… Germany is around the corner!
Today was another really, really long day, but a successful one too. My sister had a dentist appointment scheduled for today, and was going to reschedule so I was able to hop into her spot and have the rest of my amalgam removed quite spur of the moment. I am so thankful that it is all out and we can move onto treating heavy metals later this week. Then we all rushed back into Bend (my dentist is an hour away), and I had to get to my other doctor appointment early to heat up my veins in hopes that they would not collapse again. The heat helps them to expand and not go hiding away… (if I were them… I would have run away a long time ago after thousands of pokes!). I was able to receive my Artesinate IV which targets one of the main co-infections that I have called Babesia.
Babesia feeds on the protein in iron which is called Ferretin. We finally also got an answer to my ALWAYS crazy, scary low levels of ferretin. This has taken years to discover. I used to go into a clinic every 4-6 months and would get six infusions of ferretin over the course of two weeks. This was painful and extremely costly. I would test ok for ferretin for about 2 months and then it would quickly disappear until I was into single digits again. When my ferretin is this low I have zero energy, my strength is lessened, and yet it also makes it very difficult to find rest or any sleep. This can be dangerous, but now that we have an answer to what is consuming my ferretin we have to keep a close eye on my Hemoglobin and Hematecrit levels and only if they drop too low will we begin immediate injections of ferretin again. We definitely do not want to continue feeding the babesia bacteria like we had been for so many years past.
After the doctor… we switched our cell phone carrier so that our international rates were much more affordable for our trip ahead. Each little step completed gets us a bit closer… Germany is coming so very soon!
Please keep me in your prayers tomorrow as I am starting some new, intense treatments and they can always increase my “herxing” (Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it.) We believe it is important to begin these treatments since they will have to start them in Germany, and it will help increase my comfort level while in the hospital if we can work up to the levels that I will receive abroad.
This is going to be a quick post tonight. I am not feeling well, and maybe it’s because I have been at doctors appointments most of my day. I started the day extra early, which is NEVER easy for me… I don’t sleep until early hours of the morning, and today I had to hit the shower at 6am. I was at the dentist for round #2 today of amalgam removal, and I will have one more appointment next week to finish up the process before we can start treatment for heavy metals.
Then I had an appointment with my doctor here in Bend to set a soft catheter in my arm for the week… however, my veins were not wanting to cooperate today, so we ended up just getting two IV’s. I will head back to the doc tomorrow morning to try the catheter again tomorrow morning!
I then wrapped up the day with having my hair extensions put back in… what a great feeling to get all freshened up!
And…. just in case anyone forgot that today is 7-11… we made sure to get the kiddos their annual free slurpees at 7-11. This year Cory had to take them, because my day didn’t allow, but how cute is this crazy pic of my crazy bunch? Man, I love them so much!
Please pray for:
No mercury poisoning symptoms tonight/ tomorrow like I had last week
That my veins are easy to set the catheter in tomorrow
Provision for all areas of life
Kiddos who feel secure and for the nightmares to end tonight
Endurance for Cory as all areas of life are tugging on him hard
Healing for my body, Cory’s body, and the kiddos bodies
There were so many blessings along the way as well…
My Uncle is my dentist!
My Aunt is my dental hygienist!
I have the greatest hairstylist/ amazing friend!
My IV drugs made it through customs in Germany and to the doctor just in time!
My parents took me to Prineville for my dentist appointment for half the day!
My sister let Grey come over and play so she was distracted and having FUN!
Soooo… in short, God is good… all the time!
I am so crazy exhausted after this day. This is too much for me on most days now, and I am going to hit the sheets about two hours earlier than I usually do! Good night everyone!
This has been such an ongoing battle for me for about these last 8-9 years now. My hair has never been amazing or coarse, but it was long and I had lots of it. Almost a decade ago now my hair started falling out by the handfuls. Although at first I suspected it was just part of having babies and it would recover eventually, this was not the case for my head. My hair became more and more fine, it has become very brittle, thin to the point of not being able to cover up my scalp in several areas, and it has slowly broken off to up above my shoulders and above my ears in some parts too.
I know, I know… this is not the end of the world, however, I believe that God gave us hair and that it is part of the beauty we see on people’s exterior. I also know that true beauty is on the INSIDE. For me personally, this is a battle I have had to fight in my own heart. I have three kiddos and two of them are daughters that I never want to view themselves in the light of their beauty being dependent on wearing makeup, having a perfect figure, wearing the most designer clothing, or what hair they may or may not have. I also know that there have been soooooo many drastic changes in my health, emotions, appearance, and overall feeling and some of these vary greatly from day to day. Because of these unknowns that I cannot EVER be in control of, I have been wearing extensions in my hair for the last 8-ish years off and on… mostly ON! I have struggled with thinking it was vain. I have had several heart to hearts with my kiddos about what beauty is, what beauty isn’t, and why I have chosen to change a part of me for the time being. I have cried on my husbands shoulders about it more times than I can count. For some reason, hair for me is one thing that I can be in control of with extensions and they help me still feel like a girl. And you know what… regardless of how I am feeling each day, if I can get out of bed just long enough to brush my hair and put it up in a ponytail or maybe go to the doctor with curls in it… I just plain feel better all over!
I just took my extensions out tonight… I have to take them out and have them put back in about every 6 weeks or so!
These are them… They will be re-taped in tomorrow evening!
I wanted to share this info because I’ve overheard many conversations bashing ladies for having “fake” hair. I want to encourage people to have grace with others. Whether you agree with something trivial like extensions, makeup, or other things that don’t really matter at the end of the day, they do not change a person’s heart, and maybe, just MAYBE they are dealing with something out of their control that you would never know and they just need a moment, a day, or a cute ponytail to feel a tiny bit better overall!
I may have extensions in my hair, it may be fake, it will never define me, but I am ok with them and am incredibly thankful for the people that donate their hair for my extensions and literally thank God for them each day that I brush or wash them… because of those women, I too can feel like a woman on the outside while striving to be more like Christ inwardly every moment for the rest of my life!
I also have to say a quick THANK YOU to the world’s greatest hairdresser, sweetest friend, and huge blessing in my life: Jenna Ringer… you have done my hair so amazingly for soooooo many years! I am blessed by you friend! XO
One month till we land in Munich, Germany! Today Cory started all of his testing for co-infections, Lyme Disease, and a full panel work up. We became bandage buddies and I finally have a partner in all these pokes… Eeeeek!
We also got our international drivers licenses!!! It’s getting closer and I’m getting more nervous, but the kiddos excitement to see another country is a welcome distraction from all that we are facing in the near future!
On one more note, after a lengthy doctors appointment this morning, we have decided to catheter my arm so that I won’t be continually poked all week, every week… This is going to be helpful, but the reality of the severity of all of this somehow set in with just that one simple piece of news… Please pray for peace for all of us, and that little Grey, who is at the age where she’s realizing that her mommy isn’t like lots of other little girls’ mommies is going to be seeing more and more visible signs of this disease. She is also struggling getting used to me being at the doctor every weekday… She is crying when I leave and asking for extra cuddles and attention. The big kiddos seem all too strong until a “bad” night is upon us, and then fear sets in. Please pray for protection over their thoughts, that their young hearts can handle the extra burdens and that they be filled with JOY in it all! Pray that Cory is given Gods wisdom in all areas of providing for and protecting our family. Pray that he has productive days for work, enough energy to make meals, and can let down and relax/ laugh even in the mundane day in/ day out trials.
Thank you for sharing in our Beautyfull Mess… We treasure each one of you on this journey with us!
Once again, it has been a while since my last post here for many reasons. There have been some really, crazy hard days and nights filled with much pain, we are pressing through the hard times and savoring the good times. We had Lucy’s 11th birthday as well as Cory’s birthday yesterday, took a spontaneous camping trip for one night at a local lake and enjoyed the Independence Day with family and friends after starting it off with a full morning of being at the dentist. We have fought fiercely for good days… we need them more than I can express right now after having such a rough couple weeks.
Along with some of the fun activities we have had, we have also done TONS of research, asked so many questions of doctors, and have settled on a course of action that will take our entire family as well as my parents to Germany on August 5th. Cory and I will check into the St. George Klinik in Bad Ailbing, Germany on August 7th through at least the 21st. My parents will be taking care of our kiddos while we are in the hospital receiving treatment to irradiate the Lyme Bacteria from our bodies. This hospital is the only place in the world that offers this specific Extreme Hyperthermia treatment and they only treat Lyme Disease and Cancer patients there, both with great success. We will also be undergoing extensive detoxing treatments, testing, and other things that are yet to be decided until our arrival. Though we are very, very hopeful that this treatment will get here and be over with so that we can move onto the post treatment protocol and be one giant step closer to being able to do all the things we dream of doing as a family… I am filled with nerves, worries of the unknowns, and all the travel logistics for our family. I am of course nervous of being put under general anesthesia for seven hours two times for each of Cory and myself while our bodies will be heated up internally to such high temperatures that it will kill the disease causing bacteria in our bodies. We know that this treatment is what we are supposed to do, but doing it is still filled with unknowns and fears.
Please pray for our family in this soon- coming journey, Please pray for peace, wisdom, safety, and many, many, many good days ahead! Please pray for finances to be in place, please pray for our kiddos to feel safe and secure as their parents are starting to have daily doctors appointments and that is unsettling to them. Please pray for overall healing in all five of our bodies and strength and health for the five of us and my parents as well.
I know that where He leads us, He will be with us.
I will be journaling here on my blog this 30 day count down until treatment starts next month, so please read along, share and pray when you think of us.
Do you ever have a song that speaks to your very core? The song may change from time to time and vary upon each season of life… it could be of praise, thankfulness, or despair, but it shouts your “anthem” for that specific time in your life. Sometimes this “anthem” is what God uses to carry you through these murky waters if you need an extra boost, and sometimes it is a heartfelt “thank you” for all He has done in your life. Whatever it is, music is powerful, inspirational, and emotional… and for me right now I seem to be LOVING and leaning onto the powerful words of the following song. I am reminded to lay each dream, burden, and gift down at God’s feet. I feel so very weary in this battle, and I am fully relying on my “King of this Fight”. I am learning to TRUST, TRUST, TRUST when the mountains in my life are not moved. I find that my mantra… so-t0-speak is that I don’t know what tomorrow holds, but HE DOES. I don’t know where my family will be next, but HE DOES. I don’t know what treatment or better yet healing looks like, but HE DOES!!!
I sing this part especially over and over again and again and again:
“Your ways are always higher
Your plans are always good
There’s not a place where I’ll go, You’ve not already stood.” -He has been through it all… He knows… I will stand on Him, my firm foundation!
“Trust In You”
By: Lauren Daigle
Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You seeI’ve tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You’re by my sideWhen You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!
Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less
When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!
You are my strength and comfort
You are my steady hand
You are my firm foundation; the rock on which I stand
Your ways are always higher
Your plans are always good
There’s not a place where I’ll go, You’ve not already stood
When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!
I will trust in You!
I will trust in You!
I will trust in You!
Hang onto His hope dear ones… Place your trust in Him alone… and sing your heart’s anthem out at the top of your lungs with the windows down- it does your heart so good! 😉
These days are tough… but the nights are even more so. Last night was yet another one that this disease hi-jacked. The pain overtakes me, the convulsions begin, I lose the ability to hold my head up, my arms go limp, and my legs can bear no weight, tears start to flow involuntarily, I pass out half a dozen times from the sheer pain, and utter fear sets in.
Thankfully, last night I was able to get Grey all tucked in moments before all the pain started. Cory was outside having an airsoft war in the dark with Hayden and Lucy was on the couch, also nursing a migraine when all I could do was hit the couch and focus on breathing through the intense pain that hit like a brick wall.
Moments later Cory and the two bigs were by my side talking me through my breathing, offering iced tea, rubbing oils on my feet and head, rubbing my neck and back, and most importantly; praying… asking God to take it all away.
As I sit here today writing about last night, I’m reminded of two things: First, I made it through those awful moments last night when I doubted it was possible. He saw me through… gave me strength, and I know my Great God carried me through those moments that were too much for me in my own strength to get through. Secondly, in these horrendous times when it grieves my heart sooooo much that my kiddos have to know so much hurt, pain, and fearful times in this life. I see how strong they are each becoming, How much they rely on their Savior to get them through each minute, and I can truly say that in listening to my son beg God to heal his momma most recently last night… we are raising Mighty Warriors for the Lord! This is not a battle for the weak at heart, it takes courage, faith and trust in God’s promises. He promises a HOPE, and a FUTURE, when we call upon Him, seek Him, and press in. I have recently found my kids together in one of their rooms reading the Bible, explaining how it applies to their lives, how faith is so important to each of them, and I am stopped in my tracks to listen from outside and stand in awe of how only God can take such ashes and turn it into such glorifying beauty for Him!
My heart in sharing all of this is to encourage you… in each trial… do NOT lose heart. You have a God who is bigger, much bigger than all of it! He has these incredible plans for you, your family, He is going to use you and your trial if you submit it to Him. He will take your family through the fire and refine your kids, your marriage, your whole self. It will be hard, trying, and you’ll have your doubts for sure. But trust in the ONE who created you, HE CREATED YOU… just think about that. You may not know what He is doing… but He does! You may not know what His plans for your family are… but He does! I am hanging onto Him at every turn, in each tear that falls, in every twitch, every heart issue, every time I cannot form words and the discouragement doubles up… I choose to hang onto His plans, His will, His ultimate peace which passes all my understanding!
Hang in there dear friends!
Sincerely, dani
The Lord is a refuge for the oppressed, a stronghold in times of trouble. Those who know your name trust in you, for you, Lord, have never forsaken those who seek you.
Psalm 9:9-10 NIV
I have no greater joy than to hear that my children walk in truth.
3 John 1:4 KJV
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
I know… I know… another delay in posts about treatment and life in general 🙁 I’m still here, but man oh man, each day throws new things my way. I am sitting here in bed, not able to make it to church with my family today…I have been very, very, very nauseous in the mornings and most often begin my day with throwing up several times. Various mornings have started with one or more of these super strange symptoms: no hearing in my left ear, my right arm hung limp yet I could move all of my fingers (odd), my knee had no feeling, or another day had such severe pain that I couldn’t not put any weight on it, I could not focus one eye for most of one day last week… I have started to call these crazy symptoms “the thing of the day”. They seem to usually pass by about noon or so, and my afternoons from 1-5ish are what I am calling my “normal” for now.
Afternoons are spent mostly resting, trying to soak up the sunshine, being as present as I can be with my kiddos, and hoping to get at least one house chore accomplished for the day (this hasn’t been possible these last two weeks though!). I have had a migraine that won’t subside for over 3 weeks now, and am usually so fatigued and nauseous off and on most of the day that being productive hasn’t been a reality… argh!
With the approach of each evening, I start getting worse again and we have had some scary times. I had an intense peak of pain one night that left me shaking, involuntarily crying and curled up in the fetal position moaning… I honestly think that I blacked out for a bit of it, as Cory and the kids remember more of it than I do. This brings me to the hardest part for me these days… knowing how frightened my family is about the way I am feeling. My oldest went upstairs crying, praying, and saying “Mom was dying”. Cory feels so helpless not knowing how to comfort, or care for me. These are very scary times causing sleepless nights, nights full of tears, thoughts full of fears for all five of us.
We are looking for a great LLMD, or LLND (lyme literate doctors) to find someone who lives and breathes treatment for my specific conditions. I spend hours and hours each day and night researching treatment options, finding ways to protect my organs in this process, working on new ways to detox, etc… these are all things that a lyme specialist would be up on and know how to direct me. Neurologically, I am battling so hard right now and then to add onto that struggle I am trying to retain any information I read about… and let’s just say: I NEED help!
Prayers requests:
relief of symptoms
eradication of spirochetes
effective detoxing
strength for my body
emotional strength
strength and comfort for Cory and our kiddos
wisdom and direction to find THE right doctor and treatment protocol
finances for treatment
and of course complete healing for my body
Praises:
I am sleeping much, much better
Kiddos have been happier this last week than the week before
I am beyond thankful that though we are soooooo very weary of this mess; I know that my God is bigger, He is here and He is my life and breath, and I am choosing daily to put my trust in HIM!
2 Samuel 22:2-4
2 He said:
“The Lord is my rock, my fortress and my deliverer; 3 my God is my rock, in whom I take refuge, my shield and the horn of my salvation. He is my stronghold, my refuge and my savior— from violent people you save me.
4 “I called to the Lord, who is worthy of praise, and have been saved from my enemies.
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