Showing posts with label Praying Through Lyme Disease Book. Show all posts

9 things i have learned from lyme disease

May 25, 2023

As Lyme Disease Awareness month comes to an end, the reality is that those fighting Lyme Disease will continue to face their illness far beyond one month. I wrote this post back in 2018 as I was finally seeing some light of healing at the end of a very very very dark tunnel and it is one of my most highly read posts. Today, for Thursday Health Thoughts I wanted to re-share it again. Please note again this was written in 2018 so many things have changed in the past five years for me personally but not for Lyme Patients. Cheering on those in the midst of the battle and their loved ones. You can do this.

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1. Life Truly Feels Like It Is "On Pause" In Every Aspect

I can't even begin to count the thousands of times that people forget that I have had to give up my career, my independence, my life to fight this disease. Absolutely everything has been put on hold and it is one of the most difficult things to deal with in this journey. This reality actually inspired me to write When Truth Refreshes (found HERE) because of the myriad of emotions that come from this aspect alone.

This time of year (and many times of the year) brings up a ton of different emotions as my social media feeds are filled with pictures of all of the graduations, wedding announcements, baby announcements, summer plans, etc. Like many Lymies it can often feel that our lives are on a constant pause button. In that though I have learned a deeper gratitude for the beauty in life... the beauty of now.

The beauty of savoring the moments that are right before me and living them fully.

The beauty of loving those that are right in my life.

The beauty of having deeper relationships than I ever knew because Lyme has a way of stripping off the "pretend" and getting to the heart of the matter.

The beauty of living vulnerably and freely with no expectations.

The beauty of believing the impossible for each day.

This is a gift that I never want to forget as I continue to heal.

2. Healing Doesn't Happen Overnight and It is NOT a straight line.

Before Lyme my experience with being sick is that when you have an infection you feel poorly, you take your vitamins, supplements, oils, etc. and if you choose the prescribed medication and withing a day, week, or sometimes a month, healing comes. Healing takes place quickly and many people start complaining if they have felt sick for more than two or three days.

Lyme has taught me that the complete opposite can be true. Healing doesn't happen overnight and it is a complex fight to deal with all of the issues that Lyme has caused as it can wreak havoc on so many different parts of the body. It's complex. It's tiring. It's exhausting. And it is an all out fight that you are in every single minute and hour of the day. And there is nothing simple about that. (You can read more about my thoughts on the long and winding road to healing by clicking HERE.)

And in this I have learned that all of life is like that... the journey is long and it lasts a lifetime. There is nothing quick or simple or straight lined about a person's life. I read this quote the other day and shared it with my IG community and it has stuck with me in profound and deep ways:

"Making someone feel loved in an instant is so much easier than showing someone your love over and over, day in and day out. It seems to me that one of the greatest hazards is quick love, which is actually charm. We get used to smiling, hugging, bantering, practicing good eye contact. And it’s easier than true, slow, awkward, painful connection with someone who sees all the worst parts of you. But quick charm is like sugar - it rots us. Only love feeds us. And love happens over years, repetitive motions, staying, staying, staying. Showing up again. Coming clean again, being seen again. That’s how love is built."

That... yes that... is the deep kind of love I long to take with me for the rest of my life.

3. 95% of People You Know Have No Idea What Lyme Disease Is Before You Got It.

Even though there have been more people talking about Lyme Disease in 2018 than even since my diagnosis in 2013, 95% of people that I know didn't know what it was before I started sharing my story. In response to this I wrote and shared a basic post entitled, "What is Lyme Disease?" a couple of years ago (and have updated it this year which you can find HERE) that remains one of my most read posts of all time.

With this though comes a complex situation that develops. I have been very vocal about this (to the dismay of many of my Lymie friends that I know *smiles*) and it stands true. Because of this lack of knowledge the healing journey is complex and isolating. On one hand I long to have all of the energy in the world to be the biggest advocate for Lyme Disease, but on the other hand... well...the hard truth of the matter is that I don't have that energy to do all of that advocating or the passion for it.

This is complex for Lyme patients- we want to shout it from the rooftop about the disease, and yet just keeping track of all of the pills, supplements, meds, and life that needs to take place each hour doesn't allow us to do that always.

Over the years I found what has worked for me... writing for me is my advocacy point. I have also done speaking on Lyme and sharing my story. Talking and listening to those in my circle is my advocacy ... for the Lymies. For others it is taking on congress and changing laws. I love that. I love that each of us have the opportunity to walk this complex road individually and uniquely. *smiles*

And in this... perhaps Lyme Disease has given me the greatest lesson... life is to short to say "yes" to everything. Choose what is important and what you are going to invest your time into because life is short.

4. Many Doctors Don't Believe that Chronic Lyme exists and are Not Aware of the Complexities that come with it.

Before I got sick I used to watch some medical shows off and on with friends and marvel at the way the doctors would treat patients with "rare and misunderstood diseases". Before I got sick I was convinced that doctors knew pretty much everything in their field. After my diagnosis I have not watched one medical show and learned that doctors sometimes don't know everything. Let me tell you - it is not fun to be the patient sitting in the office where the "experts" on health don't understand your disease, where you have to explain how a certain medication will cause a herx reaction, or tell them that "no, this is not all in my head".

A quote that I mentioned in the forward of my first book and that has brought me to tears sums this point up well: "In the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine".

Amen. Amen. Amen.

I think that this has taught me a huge lesson in general in my life. Words are so powerful. We have the beautiful opportunity to recognize all of the hurtful and "death words" that have been spoken over us in this journey and choose to spread the opposite: to speak life-affirming words into each person that we encounter. I want to take this with me for the rest of my life.

5. Lyme Disease is the Loneliest Battle You Will Ever Fight.

"Recovery is not a team sport. It's a solitary distance run. It's long. It's exhausting. And it's lonely as hell."

Fighting Lyme Disease is the loneliest battle you will ever fight. Even with a great support team you have to face the monster day in and day out- doing something every hour or more to fight, and it is incredibly lonely. It is days upon days upon days of being in bed, being in your house (where moving to a different room can be a huge accomplishment) and days upon days upon weeks upon years of fighting a serious and determined killer. It's a solitary distance run... a marathon that you never wanted to run or trained for. It's incredibly long. It's physically and emotionally exhausting. And it's lonely as hell.

There is something deep and refining about facing loneliness though. There are lessons that I have learned in this season that could never have been replicated in a season full of people all around. These lessons have shown me the worst about me and I have grown up. Not just age wise, but in deep heart ways that only a season of loneliness can teach you. Dietrich Bonhoeffer said it well... there is a season for togetherness and a season for being alone. It's a challenging and lonely wilderness that most want to escape and run from. This journey teaches you to not run away from the hard but to face things with courage and without fear.

6. People Can Say the Most Insensitive Things

I can't even begin to start to list the thousands of insensitive things that I have been told throughout this journey ranging from: "It must be nice to not have to go to work" or "It must be nice not to have to ever leave summer you have it everyday of the year" or "I am tired and you don't see me complain about it" or "I wish I could just lay around and watch TV" (a thing to do that those who know me well know that I don't like to do) or "you just need to exercise more" or "if you just tried this... (insert oil, supplement, antibiotic, pill, etc.) you would be better" or "Why aren't you better yet?" or "You must just not have enough faith to be healed" or "What is the name of the disease you have again? Lame Disease?" And the list goes on and on and on and on...

I honestly had no idea how insensitive and hurtful people could be until I got sick. At a time when I thought people would surround, encourage, and rally around me, I have received so much skepticism, hurtful and rude assumptions and comments, and lack of support from those that I truly thought were close friends. I shared a little in my post, "after the diagnosis", but the truth is that this is a sad but realistic part of the journey.

But here is what I have also learned...

7. There are Unexpected Blessings of Illness

While it is true that I have had lots of friends walk away and been very unsupportive of my journey, I can also say without a doubt that I am incredibly blessed woman and my cup truly over runs with the way that God has blessed my life with amazing friends and family support.

Fighting a serious illness like Lyme leaves you incredibly vulnerable to the relationships that you have in your life because you have nothing to offer. You aren't well enough to do things that you might have done "normally" before (like attend special events or birthday parties). You aren't well enough to often remember the days of the week let alone remember important days in others lives (like birthdays, anniversary dates, etc.). You often don't have the strength for regular phone conversations (or meeting for coffee). And you often are trying to use every single spare energy you have to get better that "real life" disappears into a "fog" of "what was".

You learn in a heart breaking and startling way the reality that the many of the relationships that you have were built on what you have to offer another person instead of love. And the sad reality is that many, many, many people walk away when you have nothing to offer.

A sweet friend of mine who is fighting Ovarian Cancer recently asked me if I thought illness caused division and was the cause of people leaving. Over the years I have contemplated it , and the truth is that I don't think it is. Yes, illness is messy and hard and filled with tons of pain and yuckiness. BUT. I truly believe that illness just shines a spotlight on the issues, the reality, and the character of who we are and those that we are friends with. I truly believe that if it wasn't the situation of illness that caused the "fracture" in relationships, it would eventually be something else.

BUT in the midst of all of that, there are unexpected blessing of illness if you look for it. In the midst of the difficult, the messy, and painful, there emerges a group of people that become "your family" and "your tribe". These are the people that instead of walking away when times get tough they continue to love on you even though there is absolutely no benefit and no gain for themselves. They quietly and sacrificially love you, walk with you, and model what a healthy relationship looks like. They are the unexpected blessing of illness and I have realized that even more than before I am a very blessed woman. (You can read more about the unexpected blessings of illness in this post HERE.)

And here is what I have learned in deep ways as I have begun the healing journey. I love more openly and freely then before Lyme. The sentiment "wild and free" has a whole new meaning for me beyond a pinterest saying. I have learned that letting go of expectations of how someone will respond is the most beautiful thing in the world.

Love given freely will never come back without a person being changed. Keep pressing on, keep the faith, and live in the beautiful hope of loving someone freely.

8. The Financial Cost to Fight the Disease will Drain Every Resource that You Have.

I shared more in my post, What is Lyme Disease?, but this aspect is the most stressful thing about the entire journey. From it stems hundreds and hundreds of issues that are overwhelming.

Lyme Disease patients worry about things that most people don't think about. I will debate for hours and hours each week on which supplement or antibiotic I should do "without" due to money. We have concerns and stresses that are impossible to explain. We have sold everything we can think of, have had to humble ourselves to ask for money and are embarrassed to admit we have done so, and have asked every family member, friend, and stranger for help. In the process most of our relatives and friends have depleted their savings accounts and bank accounts to help us. Let me say what most Lyme Disease patients are thinking about all of the time but are ashamed to admit:

We don't care about the battles of politics and insurance. We don't care about "which treatment" is supposedly the best. We don't care about "this or that". What we do care about is fighting for our lives and our health and most of us are so scared that we can never get better because we do not have financial ability to do so.

And here is what I have learned...a simple and yet profound lesson: to watch for the miracle of provision each and every day.

(side note: If you are a Lyme patient and looking for financial tips and resources I wrote a blog post about this topic that you can find by clicking HERE.)

9. Fighting Lyme Disease Will Change You.

Even when you heal you will have changed too radically - physically or emotionally to ever go back to what you knew or were before this fight... and that is the deepest lesson I have learned.

I truly believe that Lyme Disease has changed me in the best possible way and it can if you let it. We have the opportunity to become more compassionate, loving, brave, courageous, free, and more giving people then we were before. We have the opportunity to become a better version of who we were before we entered this fight. Physically, emotionally and spiritually I look back as I enter my 6th year of living at home and see that I am a different person... I have fought for who I am and I realize that I am loving this person I am becoming.

Lyme Disease has not defined me... but it has been the greatest teacher and for that I am forever thankful for all of the lessons above.

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9 things i have learned from lyme disease

new lyme disease book releases coming 2023

January 12, 2023

Happy Thursday friends! I am so honored and humbled to share that after nearly four years, 2023 will be a year of multiple book releases!! This announcement is tenderly precious to me and I am so grateful for all of your support! Similar to my reasons behind December Caravan Shop being placed on hold, my writing took some time away.

THANK YOU so much for all of your support, sweet messages, kind words, and encouragement during these years!! I wrote this in the dedication of Praying through Lyme Disease, but my precious daddy was one of my biggest cheerleaders of my writing (along with my mom and my precious grandmother) and it was painful for a long time to step back into it. These months and years have been so difficult and your understanding of taking time away from publishing the writing that I have been doing during this season and during this time of grief, learning to put one foot in front of another, and transition has been a beautiful blessing.

This time has also given me some space to process where to go with my writing. After nearly 10 years it was time to evaluate and in doing so I fell in love with creating stories and books in a whole new way. I am SO excited to show a new season with writing and share all of the new stories and books that are coming this year and in the years to come! In the next few days I am looking forward to sharing about the new books that are coming this year (and a few special hints for next year!).

Since my first book to be published was a Lyme Disease centered book, it seemed only fitting to share first the new Lyme Disease book releases that are coming in 2023! Each of these books have been things on my heart for years. They are unique in the sense that there are no other books like them around, and my prayer is that these will be encouraging and helpful to Lyme Disease patients and those who love them.

Over each book project that I write, I have prayed the following prayer that one of my former pastors once said:

"I have a handful of prayers that I pray all the time... One is that God will put my books into the right hands at the right times. I've prayed this prayer thousands of times, and God has answered it in dramatic fashion countless times. The right book in the right hands at the right time can save a marriage, overt a mistake, demand a decision, plant a seed, conceive a dream, solve a problem, and prompt a prayer. That is why I write. And that's why, for me, a book sold is not a book sold; a book sold is a prayer answered. I don't know the name and situation of every reader, but God does, and that's all that matters."

//Mark Batterson//

Thank you for rejoicing with me and all of your support of ALL of my books as I embark on this new season!

When Lyme Invades:

Encouragement and Practical Tips for Churches, Family and Friends To Love People Well Through Lyme Disease

Release Date: May 15, 2023

Synopsis:

Lyme Disease is one of the single greatest health crises affecting our world and yet resources for churches, community members, friends and loved ones of Lyme Disease patients do not exist, until now. When Lyme Invades is the first and only Lyme Disease book centered on encouragement and practical tips for those who know someone with Lyme Disease.

"When Lyme Invades" provides an in-depth look at what it feels like to have Lyme Disease and how to practically come alongside and love people walking through this disease. Understanding that support is a critical need of patients, this book will bring awareness, encouragement, and practical tips to help address and meet the unique physical, emotional, and spiritual needs of individuals and families fighting Lyme Disease regardless of the type of treatment patients choose. Additionally, this book will enable readers to learn from countless stories so that the reader will have a well-rounded perspective.

Praying through Lyme Disease: For College Students

Release Date: May 1, 2023

Synopsis:

In a recent Lyme disease conference it was stated that "Lyme disease is the growing epidemic and health crisis of the 21st century". In this growing epidemic there are hundreds of thousands of Lyme warriors that struggle each day just to live, and finish their dream of completing and graduating with a college degree. In the midst of sickness and pain it is hard to sometimes know how to pray. This special edition of "Praying through Lyme Disease" uniquely addresses and encourages the hearts of those being a student of a university they never imagined: "Lyme University". This book gently addresses 31 topics that college students, fighting Lyme Disease face and how to pray through them each day of the month. Each day also includes verses to meditate on and encourage your heart with. In this health crisis, in the midst of college, you are not alone. You are not forgotten. You are truly seen.

Praying through Lyme Disease: For Teens

Release Date: May 1, 2023

Synopsis:

In a recent Lyme disease conference it was stated that "Lyme disease is the growing epidemic and health crisis of the 21st century". In this growing epidemic there are hundreds of thousands of Lyme warriors that struggle each day just to live, and long for a normal teenage life. In the midst of sickness and pain it is hard to sometimes know how to pray or have faith. This special edition of "Praying through Lyme Disease" uniquely addresses and encourages the hearts of those ages 15-18 years old. This book gently addresses 31 topics that teenagers face while fighting Lyme Disease and ideas to pray through (one for each day of the month). Each day also includes verses to meditate on and encourage your heart with. In this health crisis, in the midst of these "dreaming of a different life" years, you are not alone. You are not forgotten. You are truly seen.

Coming July 2023: Praying through Lyme Disease Exciting Announcement! Stay tuned! *smiles*

2024 Lyme Disease Book Releases:

May 1, 2024: Praying through Lyme Disease: For Kids

May 15, 2024: When Girl Met Lyme (Rebecca's Story)

Thank you so much for all of your support and excitement about these Lyme Disease books! I can't wait to share in the days and weeks ahead more books that will be releasing in 2023 and 2024!! If you are looking for any of my books you can find them all HERE!

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new lyme disease book releases coming 2023

praying through lyme disease german edition announement

November 19, 2021

It is with great and humble joy that I can now officially share that the final agreements and contracts were signed for #prayingthroughlymedisease to be translated into German!! (Watch a fun and exciting instagram reel about the announcement HERE!)

7 years ago, when the 1st edition of Praying through Lyme Disease was released in 2014 I remember laying in my bed, stunned that my first book was actually in print. I was so sick & bedridden that it seemed unreal. Praying through Lyme Disease the 1st edition will always have a truly special place in my heart... it was my very first book & the timing of it was unique and special. I had just been told by a major & well known medical clinic that there was no hope for my case. I felt that I had already traveled a long & winding journey with this disease but in reality I was just at the beginning stages of this journey.

Oh, I thought I had experienced the worst days of this journey (there were horrific ones that I would like to never repeat again), but I was to find that there were still more difficult & more painful days to come than I could have ever imagined.

But, 7 years later, as my health has returned & this little book continues to make its way around the world (this edition will join translations of Italian, Polish, Spanish, and Arabic)I have tears as my prayers continue to remain it will encourage those in their own dark & painful days.

As I think back to being completely bedridden & having this book go into print 7 years ago I never would have imagined that it would end up where it has. I am truly overwhelmed that there are more & more copies circulating each year as it travels around the globe.

I'm praying for you dear #lymedisease warriors & I trust that you will be praying for me as well as we continue to fight the good fight & walk the journey before us. This journey is difficult, hard, messy, & extremely painful, and yet, can be full of hope as we experience the tender mercy of a faithful God who is walking every step with us. May you experience & know His love in new ways throughout this Lyme Disease journey.

Welcome to the #prayingthroughlyme family German version!!

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praying through lyme disease german edition announement

A Drive Through Beautiful Maine and A Lesson To Never Stop Exploring

October 5, 2021

Happy Tuesday friends! As I mentioned last week, I am excited to spend the next couple of weeks sharing with y'all some recap posts from the girls trip that I took four years ago through New England, New Brunswick, Prince Edward Island, and Nova Scotia (along with some new posts from this time that I never shared also!)! I hope that it encourages you to consider taking a road trip (in part or in whole depending on your circumstances) this fall to these beautiful places in the world.

With the world slowly opening back up to some travel, the places that we went to and explored and the posts that I will be sharing are really good options (especially for those - who like myself) are extremely cautious with health reasons as we were outside and separated away from others so much. I hope that these can be adapted for your own personal needs.

Today I am excited to share some of the pictures from our drive through Maine. As I mentioned before I met up with Ali in Boston and we drove north to Camden, Maine and then on to St. Andrews By the Sea (in Canada) which was our second major stop. Doing this route gave us the opportunity to truly see a lot of Maine which was really neat.

Before this trip I had only been in Maine twice before and both times were very brief. I had driven through Portland on a tour, quickly visited the Portland Head Light House, and also spent a delightful couple of hours in Kennebunkport, but this trip provided the opportunity to really see Maine.

(Edit 2021: Since this trip took place I have been blessed to return back to Maine in a variety of different ways and times (even on a cruise) and on a New England winter road trip. You can read more about all of the Maine adventures we have taken by clicking HERE!)

As I drove the entire trip, I also felt that driving through gave me a completely different perspective then my previous quick hours in the state.

It was delightful to see the different coastlines and beaches but I also really enjoyed the opportunity to see more of the beautiful countryside that the state offers.

One of our first stops on the way to Camden was in Freeport, Maine.

One of the sweet things was that the Freeport Maine Library was open to considering putting Praying Through Lyme Disease into circulation in their library. I was so grateful for their consideration and immediately fell in love with their library and the gazebo out front. I shared the above picture on Instagram- Isn't it precious and charming?

Before we left we snapped a couple of pictures of the charming town and both agreed that it would definitely be a place to visit.

On Sunday, October 1st, after leaving Camden, we proceeded to drive north to St. Andrews By the Sea.

A lot of our driving was spent off the main highway and it afforded us these amazingly gorgeous views of different parts of Maine that we may not have seen otherwise.

We stopped often, just in awe of the beauty that surrounded us on this trip.

One of our stops turned out to be one of my favorite parts of the entire trip. If you know me you know that I love living life fully and this includes grabbing different moments. As I was driving I saw this gorgeous lake to our left that didn't look to far away and so I turned off on this small (unpaved) road. I think Ali was a bit concerned, but I was grateful that she went along with it (hahaha- not that I gave her much choice! *smiles*) because we ended up finding a most beautiful spot.

Crawford Lake was stunning. We both were in absolute awe of the beauty and spent time just soaking in the gorgeous views of the lake.

I was in complete awe of the beauty that surrounded us.

As we continued on our drive we kept talking about the beauty that we saw and the amazing place that Crawford Lake was. Taking a trip like this teaches you a ton of things... about the world, about people, and about yourself. There were so many things that I learned on this trip and one thing was to never stop exploring. There are times in life where it is not possible to travel to a far away destination, but that brief side road detour reminded me that life is full of beautiful adventures that we are surrounded by... even just taking a few moments to detour off of our normal path. So the lesson I walked away from on that day was to keep exploring, keep adventuring, and to keep taking the time to stop and appreciate the beauty. You truly never know what is around the next corner.

Today I am excited to continue to share more from my recent trip through New England, New Brunswick, Prince Edward Island, and Nova Scotia. You can read all of the posts from the trip by clicking on the links below:

MAINE: