MY Story… Begins Along the Amazon River
It was 1997 and I was entering my senior year of high school. I was a student at a boarding school for missionary kids downriver from Manaus, Brazil. I was living my best life planning school camping trips, class parties and dreaming of upcoming adventures like our senior sneak trip and spring banquet. As our fall semester carried on I started to have headaches, fatigue, heart palpitations, terrible leg pain and more. Like a typical teenager I ignored it! I went home for Christmas and came back to start my final semester of high school with no idea how much the coming months would change my life. I was constantly pushing myself until I hit a wall. After a long weekend camping up river, I went to sleep and literally could not wake up. I remember trying to open my eyes but not having the strength. The next few days it was work to stay awake long enough to eat even a few bites of one meal. I had a migraine that wouldn’t let up and my vitals were all out of whack. Even after I was able to stay awake, my strength was gone and my vital would still not normalize. After numerous doctor visits traveling into Manaus, with no answers and worsening health, it was time to fly back to the States to try to get into specialists. This was the beginning of my crazy ride… my personal health roller coaster of sorts.
Over the next few years I would see more specialist than I can even remember. They found high level of EBV in my blood that even after a year wasn’t resolving. The migraines got worse and so did the joint pain. At one point they thought I had a brain tumor, then I was told by the gastroenterolist that they thought I had colon cancer. I was only 19 when a Dr told me that I had all the criteria for Fibromyalgia, but if I just thought positive I would be fine. (hmmm…. Really???) A few years into seeing specialistI was diagnosed with Autoimmune Hypothyroidism and treating it made a big difference, until I started to decline again a few months later. It was always one step forward, followed by two steps backward.
This is how I spent the first 17 years after flying home from Brazil. I would get worse, go through months of seeing specialists, get a new diagnosis (Celiac, Adrenal Fatigue, Fibromyalgia…), change my diet, start on a new medication, feel temporary improvement and then I would crash again! It gets exhausting trying to find out why you can’t get better from something nobody can even name for you!
Then, in February of 2015, a simple attempt to change a medication sent me into a 14 day migraine. I was vomiting and nauseous. I could not stand more than 30 minutes due to the vertigo and inability to get a full breath. I started having episodes of tachycardia, where I would start to freeze and shake all over. It felt like my body was shutting down on me; I could barely move my limbs. Once again the rounds to the specialist began. A visit to my neurologist yielded a new migraine medication, but no answers. Through the prompting and help of a friend, I was able to get into a Dr. who specialized in complicated cases. I was diagnosed with Lyme Disease along with the co-infections Bartonella and Babesia. For the first time since I had returned home from Brazil, I had a diagnosis that made all the other pieces of the puzzle fit better. Several months after being diagnosed with Lyme I would be diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). It would be another nine years before I woud learn I also had MCAS completing the trifecta of Ehlers Danlos, POTS and MCAS so frequently seen together.
From MY story to OURS…
During this roller coaster of health issues I fell in love and married my husband Jesse. Together we have four children and one angel baby. By the time the fourth one was born with reflux, colic, allergies, neurological and sensory issues (just like the first three) I was convinced my “incubator” was broken. It turns out that Lyme can cross the placenta and is passed through breast milk. This can result in congenital Lyme, which can even cause the loss of a baby before birth. My first thought when I learned this was overwhelming gratitude that I was even able to give birth to four amazing children- what a miracle!
However, receiving the news that all four of my children’s lab results were positive for Lyme was one of the hardest moments in my journey. Talk about mom guilt!!! How do you sit your child down and tell them that the disease that is causing mommy so much pain is in their little bodies too? You can’t lie and say that it’s no big deal because they have watched you change under the pain and fatigue of the disease. They see you wince in pain as you walk. They have curled up next to you on the couch as you lay perfectly still while the world is spinning. They have noticed your inability to finish a sentence or express your thoughts clearly. They have joined you under a blanket as you tried to make staying in the dark a game to keep your migraine manageable. So what do you say?
I sat down with my oldest 3 children and informed them of their lab results. My oldest daughter started to worry about getting sick like me. I reassured her that her adrenals weren’t failing and she doesn’t have POTS (Postural Orthostatic Tachycardia Syndrome) like mommy. To which she cheerfully exclaimed, “So the good news is we don’t have POTS!” It’s all about having a positive perspective! (I had no idea that 2 years later we would begin treating her for adrenal fatigue and she would be my first child diagnosed with POTS. Sometimes it’s good not to know the future.) The most important thing I told them that day was that we would deal with this like we deal with other things- as a team! When they were just little toddlers I taught them a cheer. We would all put our hands in the middle and chant- go, go, go… then raise them up shouting- Go Team Fagan!!! And that is exactly how we ended our little family pow-wow that day! “Gooooo Team Fagan!!!”
“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.” Matthew 6:34 (The Message)
Not even 6 months after that family pow-wow we would discover that our home had toxic mold in the walls and under the flooring from previous water damage that was not disclosed when we purchased the home. We would spend the next few years tearing out and replacing nearly 80% of the house to make it a safe home to live in. This would mean being displaced from our home multiple times, and tossing a lot of items destroyed by the mold. Mold illness is awful and greatly misunderstood. My husband is still ultra-sensitive when he walks into any building that has mold and is our walking “mold-detector”. We learned the importance of environment when healing. We couldn’t fully heal from the Lyme until we dealt with the mold. This is why a holistic approach to health is so crucial! We also learned that home is a matter of the heart, not just the building you are in. We learned to make home wherever we were together.
Through all the ups and downs with our health we found some amazing integrative and functional medicine doctors who helped us treat the issues we were facing. It is critical that treatment be individualized, as even in a family we are all uniquely designed and have different weaknesses in our health. I dug into research and studied like never before to help my family recover and heal. Taking slow and steady steps I helped heal my adrenals and stabilize my POTS. The journey to heal is not a quick overnight cure. It is taken step by step, rebuilding and restoring a body ravished by years of out of control viruses and bacteria. It’s replenishing nutritional deficiencies and calming raging inflammation. It is about learning to rest and embrace limitations. Eventually my studies led me to return to school to finish my education as a Naturopathic Nutrition Consultant.
We have sinced moved out to the country. Through homeopathy and nutrition I have been able to tame my allergies so I can enjoy farm life. We have learned that fortifying the immune system is key to recovery from these stealth infections like Lyme. We manage our health through nutrition and supplemental supports, so we can enjoy and build the life we want with our children. Seven years ago when I found myself needing a wheelchair and unable to stand long enough to cook, I could not have imagined our journey ahead to find health again.
Our health is not perfect. We still have flare ups and if we get sick it takes us a bit longer to recover. But we are living life and loving it! And now I want to help others navigate their family’s journey back to health. This is what God has called me to do.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” 2 Corinthians 1:3-4 (NIV)