Just like our broken world, our broken bodies constantly remind us that everything is not as it should be. On this Womanly Wednesday, my sweet friend Rebecca of Caravan Sonnet is sharing about her journey with Lyme Disease and cancer and how those battles have shaped her into the woman she is today.
When I was correctly diagnosed with Advanced Late Stage Lyme Disease in 2013 I had a very emotional response to the news. It was not a pretty sight, and to be frank it wasn’t “accepting” at all. I fit the complete profile of a lady who went through the all five stages of grief.
For many, like myself, who are diagnosed with Lyme Disease, the process to get the “official diagnosis” is a long and winding trail that had taken years to track down. In my case I had seen (across the country) 273 different specialists and “top doctors” before I was diagnosed. I had been told by countless GI practitioners that the intense pain that I was experiencing was simply “in my head” and that the reason that I wasn’t eating properly was because I was “seeking attention”. I had been told by countless doctors that I should seek psychological help and that it was simply “stress” that was causing my confusing symptoms. I had been told that my diagnosis of Chronic Fatigue and Fibromyalgia were correct and that I had a very “complex” case of both of these and simply needed to “rest.”
It was a long tiring road to get a diagnosis and when it was suggested that I spend several hundred dollars to be tested for Lyme I at first dismissed the idea. I had had Lyme in 2007, been treated at John Hopkins Lyme Center, and there was no way that I could still be dealing with it. At the same time, in the back of my head though, I had a sinking feeling that was exactly what was going on. The strange symptoms that had persisted, morphed, and caused tremendous havoc on my body for 6 years suddenly seemed to not be so strange and seemed to have a startling pattern. I got the tests back on my 33rd birthday. I was “positive” in every test and the tests didn’t looks “so pretty”. I had Advanced Late Stage Lyme Disease.
Three months later I was diagnosed with Cancer.
In many ways, as I say in my book “Praying through Lyme Disease”, my family and I rejoiced that there was finally an answer, but I also experienced a range of emotions as I was furious with the medical community and overwhelmed with where to go from that point on. Ironically, when I first started writing about Lyme Disease on this blog I simply shared that I had been diagnosed because there had been a rumor going around and some former students were concerned because they had heard I had Cancer. (At that point I did not know that I was in fact fighting Cancer also.)
My point is in sharing this part of the background of the story that I was desperate to find answers and to get my life back. I was back in graduate school obtaining my second masters at the time and I thought, “well I know how to research, I will just research all that I can“. I was veracious about research and read every single thing that I could get my hands on. A lot of it wasn’t so encouraging and a lot of the stories that I read brought tears to my eyes. A lot of people that I tried connecting with were “secretive” in their knowledge and information as high insurance liability has forced many Lyme doctors to “work underground” and patients were sworn to secrecy.
Within three weeks of my diagnosis I contacted 73 of the leading Lyme Specialists and learned quickly that I was looking at spending approximately $2000 out of pocket to just see the physician for a check up (and this didn’t include the lab work, the specialized testing, the treatment, etc.). I learned quickly that most Lyme Doctors do not take insurance and while I could submit forms to my insurance carrier on my own, most would not acknowledge the doctor and therefore I would not be reimbursed. I was told by hundreds of people that I contacted over the internet that “they didn’t want to be discouraging but that my hopes of returning to my normal life were over”.
Those first few weeks were incredibly disheartening and to add to that trauma (the only word I can use to describe being diagnosed with a life threatening illness and being told that there is little hope) I lived most of the year in the south. The south where doctors informed me that “there is no such thing as Lyme Disease”. The south where the newspaper wrote that “Lyme Disease is only in the north and ticks stop at the Mason-Dixon line” (yes, that is a quote!). The south where my pharmacist had no idea what medications should be used for Lyme Disease or why certain drugs are dangerous for Lyme patients. The south where countless specialists (that I was seeing at that point) told me that I should be “concerned” that I was given such a “inaccurate diagnosis”.
It was a long long road at the beginning. There were tons of tears, tons of overwhelming moments and tons of times where my parents and I just looked at each other, our mouths saying nothing, our eyes saying everything. Even now, as I write this, I still have tears as it was an incredibly painful, scary, and lonely time. If you have ever had a family member diagnosed with a serious illness you know exactly what I am talking about.
As the emotion started to settle into a state that was new to all of us, we made the decision that a “complimentary” approach would be best for my case. At that point after the research that I had done, we chose to go to a wellness institute in California. It was a difficult decision but one that we believed in and with the help of generous friends and family members who donated $2,000, I spent three weeks out in California receiving natural treatment. While I was out there (alone as we did not have the funds for anyone to come with me) I was diagnosed with Cancer, had surgery, and continued to receive treatment for Lyme Disease, all while being thousands of miles away from my family.
When I arrived in California I had difficulty walking (mostly used a wheelchair), couldn’t eat any foods except for a few specific ones, my digestive system had crashed, and I was seriously (and non dramatically) near death. (In fact, one of the first things I asked the doctor was that I wanted her to be “straight with me” as I wanted to go home if I didn’t have much time left.) Three weeks and $14,000 later I was on my way home able to walk and eat a well-rounded diet after three weeks of hyperbaric oxygen and vitamin c treatments. I felt like a “new woman” and was incredibly excited for the future. My doctor even assured me that she thought that I would be returning to work full-time by winter 2014.
Unfortunately this was not the case.
As fall 2013 approached November it became obvious that the medical care that I was receiving out there would not be “transferable” to a long distance relationship. The fall 2013 was incredibly difficult not just physically (where I was going to the ER at least once a week) but also emotionally. When my doctor became difficult to work with, I had to make the difficult decision to leave that doctor. I wrote in a post here about why as a seriously ill patient this is such a difficult thing to deal with. December 2013 was probably the most difficult and terrifying month of my entire life as I had several hospital stays and lost several acquaintances and friends to various illnesses. In addition to this, I experienced the heartbreak and loneliness that often accompanies long-term or chronic illness where friends and family members that I thought would support me on this journey “disappeared.” It was emotionally devastating.
I was also told by several well-known hospitals who were reviewing my case (including Mayo, Cleveland Clinic, and MD Anderson) that there was “nothing that they could do” as my case was too far advanced. As January 2014 came and went it was obvious that my health was rapidly declining and we had no idea where to go from there but the Lord brought a new doctor into the picture (also out in California). I flew out to California for my appointment and was given an entirely new plan.
I was also told by several well-known hospitals who were reviewing my case (including Mayo, Cleveland Clinic, and MD Anderson) that there was “nothing that they could do” as my case was too far advanced. As January 2014 came and went it was obvious that my health was rapidly declining and we had no idea where to go from there but the Lord brought a new doctor into the picture (also out in California). I flew out to California for my appointment and was given an entirely new plan.
This plan included results from blood work that had not been done previously, the shock of finding out that I had an environmental illness on top of Lyme and Cancer, the reality of learning that I did have the MTHFR gene mutation (which is important to understand in illness, especially with Lyme Disease), and the fact that I also had Mast Cell Disease (something that at the time I did not share and have not shared until now), plus dealing with some other co-infections and that I had a serious case of Mono was overwhelming.
At the same time though I was at peace. For me, my prayers of finding the right medical team had been answered. It was a long, long road to get to the right medical team but the Lord was faithful throughout the journey. As long as it took I can still look back and thank the Lord for the “detours” that led me to my team.
At the same time though I was at peace. For me, my prayers of finding the right medical team had been answered. It was a long, long road to get to the right medical team but the Lord was faithful throughout the journey. As long as it took I can still look back and thank the Lord for the “detours” that led me to my team.
For a long time I hesitated to share my story of “after a diagnosis” because it is not the “pretty story”. To be frank these last couple of years have been the most difficult in hundreds of ways. But I started realizing that when we share our messy and our “ugly” we have the opportunity to share with others going through messy and ugly times and give hope. Our stories can give a voice in the dark to someone who feels there is no way out. Giving ourselves permission to acknowledge the dark, especially in this season of lights and joy allows us to find strength and joy that we might never have known before a diagnosis. My best advice for anyone who is facing life “after a diagnosis” is to take one day at a time and when that seems like to much take one minute at a time. You can do this. You have got this. You can beat this. One minute at a time. One hour at a time. One day at a time. Every minute, every hour, every day is not only one step closer to healing but to finding strength and joy after the diagnosis.
Rebecca VanDeMark is an author, speaker, and blogger who loves Jesus, life, and the miracle of Hope. Rebecca’s three books,“When Light Dawns”, “Praying through Lyme Disease” and “Prayers for the Single Journey” are all available where books are sold and on amazon. Rebecca is the founder of Grace Engaged, a ministry for high school women and owns a handmade company, December Caravan, which donates a portion of all of its proceeds to charity. Rebecca is passionate about the hearts of women, high school and college students, singles, and those who are chronically ill. Rebecca writes and speaks about celebrating the extraordinary moments in the midst of ordinary days. Dealing with subjects of relationships, singleness, disease, shattered dreams, family, heartbreak, love and hope, Rebecca compassionately and uniquely shares about finding an ever-present Savior in every moment as she survives and thrives with Advanced Late Stage Lyme Disease and Cancer. Rebecca lives with her family, splitting time between the sweet south and upstate New York. Rebecca can be found on her blog, Caravan Sonnet and on social media (email, instagram, twitter, facebook and pinterest).
THANK YOU so much for letting me share my story Lauren. I was so touched by your kindness in allowing me to share some of the difficult and dark of these years. I hope and pray that it is an encouragement to someone!! Thank you so much again!
Blessings, Rebecca
Rebecca recently posted…When Light Dawns (Social Media Reviews)
I’m so proud of you, sweet friend!! This was beautiful, and even though I knew most of it, reading it all laid bare like this still encouraged my heart. I am always seriously humbled at how, as you move through the “ugly” stages of grief, your instinct is to encourage others. You have such a beautiful, big heart <3 Love you!!
Katie {Always, Katie} recently posted…YouTube Channel: Influenster Pumpkin VoxBox Unboxing Video
OH friend. You are the best. Thank you so much for taking the time to read and for ALL of the encouragement you constantly give. You are such a blessing! Love you!!!
Rebecca recently posted…35 Christmas Present Ideas for Lyme Disease Patients
This is such a emotional and moving story! I can understand how it is so difficult to share and really difficult to put in to words just how challenging this journey has been for you! I appreciate you sharing this and your words are powerful. Thank you for giving others strength in time of need.
Erin recently posted…Motherhood Worry: a Journey of Love
Thank you so much for your sweet words Erin and for taking the time to read a little bit of my story! Your words truly encouraged me today!!! Thank you so much!!
Rebecca recently posted…35 Christmas Present Ideas for Lyme Disease Patients
Such an incredible story! I can’t believe all of the hardships you have had to deal with. It’s always so moving to see someone share their story with friends and even strangers but it helps give everyone strength and faith. Even though your story isn’t a “fairytale ending” it is real and it is yours! Thanks for sharing 🙂
Chandler | Life as a Larsen
Aww thank you Chandler. I so appreciate your words of encouragement as I shared my heart and this story. It is definitely not the fairytale ending but I love that we can share our stories and encourage one another through the hard circumstances in life! Thank you so much for taking the time to read and to leave a comment today!! Blessings, Rebecca 🙂
Rebecca recently posted…35 Christmas Present Ideas for Lyme Disease Patients