Though I have never met Raegan in person, she is someone who has become very dear to my heart. Her story is a great example of why Krista, Shauna and I began this journey of sharing women’s stories. Our stories matter, and they connect us all on a deeper level. That has never been proven more true for me, than with the experience of helping Raegan share her story.
The most beautiful words I believe we can say to another is, “me too.” There is a bond that is formed when you can exchange those two simple words. Through Raegan vulnerably sharing her story with me, she validated so much of my own. As I learned more about Raegan’s experiences in living with Lyme Disease, those words “me too” kept playing over and over in my mind. It was as if she were writing my experiences. My experiences that up until then, had never been validated. Doctor after doctor had made me feel like I was crazy. It had been 3 years of battling and knowing something in my body just wasn’t right. My symptoms were weird and didn’t fit into a pretty little box like most doctors would like. All I knew is I went from having a huge pain tolerance, which included 4 natural child births, to not being able to brush my hair or lift my kids into their car seats. I went from refusing to take any type of medicine for even a simple headache, to taking an assortment of medications for random diagnosis like Fibromyalgia and Hashimoto’s. We spent thousand and thousands of dollars trying to fight something, but not knowing what it was that I was truly battling. That was until Raegan shared her story.
Those words, those beautiful words of “me too.” All of her symptoms…”me too.” All of her experiences with doctors…”me too.” All of the isolation from friends and family…”me too.” Doctors and other people saying but you don’t look sick…”me too.” Living days where success meant getting the mail…”me too.” All of the joys in life that were ripped away…”me too.” It is because of Raegan sharing her story that I too have been diagnosed with Late Stage Lyme Disease.
One of the questions I asked Raegan when interviewing her was, what are your hopes in sharing your story? Her reply,
If I can help lead anyone else to a real diagnosis or simply encourage someone to listen to their body more often, then my work in telling my story will be completely worthwhile.
Well Raegan, your hope came true. And that someone, is me. You and your story helped lead me to listen to my body and put me on the path toward an accurate diagnosis. Thank you from the bottom of my heart. I know I would not be on my way to health without you sharing your story, and it is because of you that I have found hope again. I look forward to the day that we meet in person…two healthy ladies who can embrace in a hug and say “we kicked Lyme’s ASS!” I love you my fellow Lymie. Thank you for honoring us all with your story.
*If you would like to help Raegan fight her battle against Lyme Disease, please consider donating here . All donations, big and small, make a huge difference and is greatly appreciated. We wish Raegan the best as she begins this journey toward healing her body.
This feature story is very personal to me and I am honored to introduce you to Raegan Gottlob. After 5 long years of being chronically ill, Raegan has recently been diagnosed with Late Stage Lyme Disease. This debilitating disease is often referred to as “The Great Imitator” due to it’s symptoms often mimicking other diseases. Her story is one of great suffering, yet filled with such beauty. These are her words, this is her story…
After nearly 5 years of searching and not knowing why I was chronically ill, I finally have an answer. It almost feels weird to be able to say, “I have Lyme Disease.” Initially, I had mixed feelings about receiving this diagnosis. It was scary, it was extremely validating, and it was relieving all at the same time. I want to share my story because in some ways it validates my experience to be able to share. I am not crazy. I am not lazy. I have a real and very complicated disease. I think sharing my story is an important step in my healing journey. It helps to heal the wounds left by incompetent doctors who told me that there was nothing wrong with me. By people telling me that I should just try harder. Eat differently. The wounds left by me forcing my body to keep going even when I knew in my heart that what my body really needed was trust, rest, and more trust.
I also want to share my story because I know that there are others out there that are going through what I did. Doctors are not finding anything wrong with them, yet they are slowly deteriorating. I think the slow deterioration can be misleading because you might think, well I’m not that sick and so you forcefully carry on as usual or as close to usual as possible. Six months later, you wake up and you can’t go to work anymore, you can’t walk your dog anymore, you have no social life left, and it’s a real struggle just to make it through each day.
Five years ago, I was running long distance races over mountain passes and now it is impressive if I manage to go grocery shopping.
My health problems began snowballing in 2010. I hadn’t had too many health problems prior. I knew that I was sensitive to gluten and had struggled with depression since I was a child. Other than those, I was medically “normal”- a word that would later come to haunt me. I also had really horrible menstrual cycles as a teenager and by horrible I mean extreme pain and puking. It turns out that most women with Lyme Disease have menstrual difficulties and their overall symptoms are much worse during their cycles. Lyme Disease is also strongly correlated with many autoimmune conditions, like Endometriosis, Celiac Disease, Rheumatoid Arthritis, etc. In the fall of 2010 I woke up one morning with a stiff neck. This stiff neck was different and it has never fully gone away in the past 5 years. I still have it as I write these words. That was the first weird symptom that I recognized, followed by hip pain and hypersensitive hearing that developed throughout the following year. I couldn’t tolerate watching movies at a normal volume and crazy things like water running from the faucet were unbearably loud and assaulting. I started wearing noise-cancelling headphones around the house to help block the noise of day to day life. I was referred to an ENT (ear, nose, throat) specialist for this problem where I was diagnosed with Hyperacusis (basically just a name for the aforementioned hypersensitive hearing) and told there is no cure or helpful treatment available. I think that was the first time I cried the whole way home from a doctors office. Soon came the onslaught of symptoms: fatigue, migraines, bone pain, difficulty exercising, abdominal pain, oversleeping, muscle weakness, other food allergies, migrating joint pain, teeth grinding, insomnia, etc. Until February of 2015, my only diagnoses were Hyperacusis, Celiac Disease, and a pretty major Vitamin B12 deficiency. You must understand that 5 years is a pretty long time to experience this myriad of weird and seemingly unrelated symptoms and to have every doctor tell you that your blood work is normal, your lab results are normal, your ultrasound is normal, your MRI is normal, your colonoscopy is normal (yes, I had a colonoscopy at age 25 and I was the youngest person in that clinic by probably 40 years…did I mention humble pie?). My personal favorite was You don’t look sick. Five years of this definitely makes you question the validity of your experience. I really did wonder if I was just crazy and imagining things.
While doctor after doctor tried to convince me that nothing was wrong, my life continued to fall apart. I knew it wasn’t just in my head and that something was significantly wrong. I want to encourage others that are experiencing some of these experiences not to give up. Keep researching, asking questions, and to find a doctor who will listen. It is imperative to become your own advocate when you are chronically ill or it is likely that you will never get better. Rather, you will come home with labels for things that have no cure and no concrete root cause like Fibromyalgia, Chronic Fatigue Syndrome, Depression, Multiple Sclerosis, Rheumatoid Arthritis, Autoimmune Diseases, etc. These labels will cause you be medicated for life and meanwhile, your symptoms may not improve.
Through advocating for myself, I finally received my positive test results on February 5th, 2015. My first emotion was overwhelming relief and shock at actually having an answer. This moment of elation was quickly followed by the somber reality of what a long road it was going to be to recovery.
For the first time in 5 years, I finally felt like I had permission to feel so tired and sick.
It was very validating in a way, I finally had a concrete answer to give my friends and family. It’s kind of funny because I feel exactly as terrible as ever, but now I’m allowed to feel this way because there is a name for these tiny bacteria that have taken over my body. It is a completely overwhelming diagnosis to receive for many reasons. One of these reasons is that the treatment options are not always successful. Many people do not get well on antibiotic therapy. Many people do not get well on herbal therapy. Some people get well with a combination of both. Some people never seem to fully recover. It is very difficult to find a doctor who knows how to treat late-stage Lyme Disease. Many doctors think that 8-14 days of antibiotics totally cures Lyme Disease. In reality, this is only true if you have just been infected. Once many months or years have passed and the infection has spread throughout the body, recovery times are estimated to be at least 3-4 months for each year that you have been sick. For me, that means that it will probably take at least 15 months for me to fully recover but it is very likely that it will take even longer. I am currently on the waiting list for two different Lyme-Literate MD’s. These doctors are so overwhelmed by patients that the waiting lists are 6 months to a year long. I am doing a herbal program developed by Dr. Lee Cowden while I wait to be seen by one of these doctors. Since my diagnosis I am often asked if I’m starting to feel better? My answer is no, and to be completely honest, I usually feel like shit. I feel like I am dragging around ten pound weights on my arms when I do the dishes. I feel like I got hit by a train when I wake up or that I had way too many drinks last night, which I assure you is not on the menu. Taking a shower and checking the mail make for a pretty successful day. No, I am not feeling better yet. Unfortunately, I will need to endure the downhill journey of getting much worse before I start to get better. Let me explain, in order for me to heal/feel better I have to successfully kill millions of microscopic bacteria that are living in my tissues, my joints, my brain, and my organs. As these bacteria die off they release endotoxins much faster than the body can handle, which provokes sudden and exaggerated inflammatory responses. Inflammatory responses can include joint pain, bone pain, migraines, severe brain fog, and pretty much pain anywhere or everywhere.
The slow deterioration of my body and mind over the years has been completely devastating in every possible way: emotionally, spiritually, mentally, relationally, financially, and physically. Devastating in the sense that everything I used to hold onto, feel in control of, or derive comfort from was slowly stripped away from me. It took me a long time to stop being angry and frustrated about not being able to do the things that I use to. For awhile I struggled deeply with the question of Why is this happening to me? I’m a good person, etc. I was hurting myself emotionally, psychologically, and physically by consciously choosing to not to listen to my body’s cries for help. I finally realized that I would truly never get well if I continued practicing this detrimental pattern of self-inflicted hurt. This realization has been an incredibly important turning point in the process of healing because healing is so much more complicated than simply addressing the physical symptoms. I have had to really learn to cultivate a pattern of self-love in my life, in all aspects. One example of this is that I am no longer working at this time because I know that if I continue to expend all of my energy (and then some) during the long hours at work, I will never get well. Here enters the biggest piece of humble pie you have ever seen, which is most easily digested in small bites. However, this is not how it was served to me. It was more like wolf down this giant dose of humility in one sitting…which included quit your job, become financially unable to provide for yourself, and hit rock bottom, all at once. I knew this had to happen if I ever wanted some semblance of a normal life again.
Chronic Illness not only affects everything in your life, it also deeply impacts everyone in your life. I am very fortunate to have a supportive family who does everything they can to help. Whether it be financial assistance, coming to hang out with me, a note to let me know that I am loved, or just making me laugh. Sadly, some of my friends have been weeded out by the nature of chronic illness. It’s really hard for some people to deal with suffering, so instead they just avoid it. Honestly, I fully understand this reaction and have no hard feelings toward anyone who didn’t want to deal with it. Unfortunately, it is always the ones closest to the epicenter of chronic illness who are the most affected and who have no choice but to embrace the suffering. My caretaker has been my boyfriend, Wylder, and I can tell you without a doubt that it is no easy task. I have been some version of sick the entire time we have been together and it has only gotten worse. It’s tough because we are young and we’re not exactly out having lots of fun. We both love traveling and are very active, outdoorsy people when circumstances allow for that. It’s been really heavy and disheartening a lot of the time, especially before I got a diagnosis. We are severely unbalanced on the suffering versus fun scale. We have been saving up a seriously huge pile of fun IOU’s for later, for that teeny tiny little flicker of light at the end of this tunnel. It’s been really important for us to keep an open dialogue throughout this journey. We talk about how much it hurts and how unfair it feels and we wonder if it will ever end. We try to ensure that Wylder maintains some semblance of normalcy by going rock climbing and socializing with people other than me. The balance is not always perfect and it is a heavy burden for him to carry during those times. Let me clarify, I’m not referring to myself as a burden but to the heavy weight of prolonged suffering. Basically, there are only two choices: embrace the suffering and expand your experience by opening your heart or avoid dealing with the suffering and allow it to narrow your perspective by making you hard, angry, and closed off. It’s a daily practice of mine to embrace the suffering. Maybe that’s what I should say the next time someone asks me what I do all day…Ha!
As I reflect over the last 5 years, I feel like I am polishing my own mirror. I have never seen my true self so clearly and been so devoid of identities as I am right now.
All of my identities have slowly been stripped away. I use to pride myself on being a strong, independent woman who can make her own money and take care of herself. I used to hold very tightly to my illusion of control over my life and my experiences. I can no longer say that I’m a runner, skier, swimmer, rock climber, house painter, etc. I no longer have a strong physical body. I still want to do and be and have these things (except house painting!) but they are no longer defining factors of who I am. I am no longer gainfully employed or financially self-sustaining. That is a really difficult reality to embrace in this society, especially at age 28. I recognize, I can no longer be defined by the things I can or cannot do/be. Learning to love myself when I can’t get out of bed is the new title of my life story. I love myself now more than I ever could when I was considered to have a self-sufficient life. It’s actually very ironic because chronic illness is terrible on so many levels, but I probably never would have learned to wholly love myself if I hadn’t had all of my identities and semblance of control taken away from me. Who am I now? I’m a girl who works on opening my heart every day no matter what the day holds. I am a girl who has really begun to find joy in the tiniest victories and the simple feeling of the sunshine hitting my face. I’m a girl who lets go everyday because I’m tired of being dragged. I’m a girl who has somehow found utmost gratitude in my situation and I am so thankful for that. I’m a girl who has found true compassion in the heavy blanket of darkness. I am so grateful that my heart is able to embrace the suffering, even though my mind and my body struggle with acceptance every single minute of every day. My heart is more open than ever…so bring on the polishing!
*Finally, we couldn’t end Raegan’s story without asking What is your favorite drink? Right now my favorite drink is probably spearmint tea with hemp milk and raw honey. If you meant adult beverage, I really can’t have those in my current state:)