Hi Beautiful Friends,
It has truly been an incredibly intense few months. I’m not even really sure where to begin other than to jump right in and share my story with you, in the hopes it might provide guidance for someone going through similar challenges or dealing with a chronic illness and feeling alone.
Let me start near the beginning, or the beginning of this new health chapter-– back when I knew something wasn’t right in my body. Back in December of 2018, essentially four months ago, I started to feel very “off.” I was having much more anxiety than usual and started to get these very intense pressure headaches that would come and go. This was a new kind of headache and made my head feel like it was going to blow up. The anxiety that I experienced was also different than my normal kind of anxiety. It came in the form of OCD or obsessive thoughts that would kind of popcorn around my brain. They were really strange and started to worry me! The thoughts I was having felt very much like they weren’t me at all. I chalked this all up to the fact that Dylan and I were experiencing SO many life changes and had an extremely busy few months. We got engaged, moved to Healdsburg, took lots of trips, had all the craziness of the holidays, and Dylan started a new job to top it all off. As December progressed, I seemed to be feeling worse and worse. I was exhausted, anxious, and started to feel these feelings of a deep sadness for seemingly no reason. It was incredibly strange because everything in my life seemed to be going so well! We were starting to talk about planning our wedding and my business (this blog) was doing better than ever. For some reason, I felt like I couldn’t keep up with it all. I started to feel incredibly OVERWHELMED all the time, at small tasks or things that wouldn’t usually bother me or make me stressed. Even getting through my work day and putting myself together started to seem really really really overwhelming. Strange, I thought…
I started 2019 with a to-do list a mile long. Despite the cue I was getting from my body to SLOW DOWN, I decided I was going to be busier than ever before and accomplish all the goals I had (putting MY plan before God’s plan here). I hopped on another flight to LA to attend BlogHer’s blogging conference in downtown Los Angeles with one of my best friends. I was so looking forward to that weekend, little did I know that this weekend would be the one to really “break the camel’s back.” This weekend honestly changed my life. During this weekend with my girlfriend, I felt SO incredibly “not okay” and I didn’t know why. My heart started to race all night long, I barely slept, and I started to feel like the world was closing in around me at all moments. We stayed in an air bnb downtown and I remember thinking it was so darn overwhelming trying to get into the airbnb because the building was like a maze. The sounds of downtown Los Angeles made me feel like the world was literally closing in around me, I was so overwhelmed by lights, sounds, people, and couldn’t seem to calm my racing mind. I felt like there was no “safe place” because I felt SO not myself. I could barely keep my thoughts straight and my brain started to feel very foggy. Socializing at the conference was such a challenge, because I felt like I couldn’t get my words or thoughts straight and had the pounding “back of the head headache.” All I wanted to do was be home in bed but couldn’t figure out WHY! Not knowing what was wrong, I pushed myself to attend all the events and be busy like I had planned.
The weekend went on and by the last day I was feeling absolutely terrible. I can only describe it as I was so unable to be “okay” in any moment. I was anxious and sad, my body hurt, I didn’t sleep, heart racing, thoughts racing, I felt like my body was being attacked! I barely felt like I was in my body and I sure as heck didn’t feel like my usual excited and vibrant self. On my flight home to Northern CA, I had the worse panic attacks I’ve ever experienced. I literally felt like I was going to die for the entire airport experience and plane flight. I texted my family and therapist “there is something really wrong with my body right now and I’m so scared I don’t know what it is.” Thankfully I made it home safely, so confused as to what I had just experienced and why I felt like “I couldn’t be okay.” VERY STRANGE for an adventurous girl who loves travel, being on the go, and generally feels happy and positive!
The next morning I woke up in tears knowing again that something was really really wrong. This time it was a deep sadness and flu like pain in my body. I called my parents who were coming back from a trip in Europe to tell them I needed them home ASAP. The next weeks are honestly a blur. I felt so afraid to be alone because I was incredibly scared about these intense symptoms I was having that would come and go. I was crying all the time, sensitive to light, noises, overwhelmed, had so much brain fog, wasn’t sleeping, heart was racing, overcome with anxiety, body felt like it had the flu, hands were hurting, and more. It was overwhelming and quite honestly the scariest weeks of my life. I felt like I was dying but didn’t know why.
After seeing my “hormone specialist” who has diagnosed me with hormone and thyroid imbalances and treated me for them over the last 4 years and having her tell me that I just needed to be taking more “bioidentical estrogen and progesterone” as well as a few more supplements, my intuition kept telling me that this wasn’t right. She wasn’t right. Come to find out, she had been misdiagnosing me for YEARS now.
Thankfully, I got in to see another local Naturopathic Doctor in Santa Rosa. She ran TONS of bloodwork on me and after a few weeks of trying to figure it out, my symptoms started to shift even more. The brain fog got worse along with the fatigue, shortness of breath, random read marks on my body, headaches, seeing yellow splotches, scary disassociation, extreme emotions, overwhelm, hands hurting, stomach pain, random body pains, not hungry or really able to eat, nauseated, air hunger, beeping in my ears, and more. They started to turn into what Dr. Kelly said sounded like a viral infection, possibly some of the confections of Lyme Disease. She put me on a heavy detox protocol so we could essentially wait for my immune system to show what was actually going on. It turns out, you can have various infections but they can lie dormant in the body, only giving a few symptoms (like me for the past years) until they ALL really come out to play when your immune system shifts and starts to fight them (me back in January). The wild thing is during this time of trying to figure out what was wrong with my new naturopath, I tested negative for a test that would indicate Lyme or viral infections in my body. Apparently, this is actually VERY common in people who are actually positive. Sometimes the immune system doesn’t show it OR it doesn’t show up on the first test.
During this process of waiting to find out what was wrong with me, my family decided to send me to my father’s infectious disease specialist. My Dad actually has Lyme disease and has been treated at this very center with great results. However, it was VERY tricky because Lyme Disease has looked very different for my Dad than the co-infections have for me. His has manifested as more pain and exhaustion and less of the emotional symptoms (I’m experiencing the exhaustion now but wasn’t until I started treatment). The infectious disease doctor ran an IgenX blood panel on me which is the most accurate test for Lyme Disease and the various co-infections. The super tricky thing with Lyme is that many times, patients will get a negative on the other tests that are run but STILL actually have Lyme Disease or some of the co-infections, like I mentioned above. This is why it is SO important to do an Igenx panel or see a Lyme literate doctor because it’s accurate and will show you what’s actually going on. Another thing to note is that Lyme can mimic MANY other things such as chronic fatigue, fibromyalgia, tinnitus, pain, flu symptoms, hormone imbalances, thyroid issues, mental health issues, and so so so many more.
I remember getting the call about a month and a half ago that finally put all the pieces together. It was actually a voice mail left on my answering machine with my Igenx results. It came back that I have a few Lyme Disease co-infections called “Babesiosis” and “Bartonellosis.” When I got the call, I bawled. I bawled because I finally had answers to why I was feeling so horrible and desperate and sick. I bawled because I finally had a doctor tell me what was ACTUALLY wrong instead of looking at me and telling me nothing was wrong with me or “you look great, you must not be sick,” or misdiagnosing me with random other health issues like anxiety, hormone imbalance, thyroid imbalance, digestive issues, food sensitivities, etc.
After meeting with my infectious disease specialist, I learned that these diseases are something I’ve actually been living with for a while now, at least 4 or 5 years. I remember being in college in Nashville and having my first health scare with this extreme shortness of breath, red marks on my body that would come and go, and panic attacks that I had NEVER before experienced in my life! It’s possible that I could have been infected back when I was 19, the summer after my first year of college. Age 22 is really the first age that I went through health issues and was then misdiagnosed as the “hormone imbalance and thyroid issues” but never really knew why. Doctors were never really able to tell me WHY I was having these random symptoms, until NOW. It is also possible that I could have been infected around the age of 12 because I had symptoms back then also. The body is an incredible machine, the way it’s able to function normally and be healthy even when it is fighting infection.
I feel very very lucky that I was able to go so many years functioning normally despite having these random symptoms that I always passed off as normal or as anxiety. I now know that I’m not just an anxious person, but that I’ve had bugs in my body that were literally in my BRAIN, affecting the way I think and process information. I also feel incredibly thankful and proud of my healthy lifestyle, faith, and sense of self, because I know that it is what’s allowed me to not get “this sick” until really the start of this year.
I am not going to sugar coat it. This shit has been HARD. It’s been by far the most challenging thing I’ve ever gone through in my life. Lyme disease involves the mind, the body, the emotions, and really every part of you. I think the hardest part has been the days where I don’t feel like “myself.” However, there are SO many positives and I’m choosing to see the bright side.
I absolutely know that God is using me in this journey to bring awareness, to bring light to an otherwise dark subject, and to show others that you CAN get through this. I am positive that I am healing and that I will be back and better than ever before, minus the yucky BUGS. If this stuff had to come out, I’m glad it came out now so I can move on with my life and lead a healthy long life. I’ve also been absolutely blown away by the Lyme community and greater purpose this has given me. Who knows, maybe I will become a Lyme literate doctor someday to help others not have to go through the extreme challenge of misdiagnosis that I’ve been through.
One of the biggest things I’ve learned so far is that the things I would have been worried about even six months ago, are actually so silly and small. Things like how we look, small fights with our families or significant others, or even the pressure that I put on myself for so long to have “life all figured out” REALLY doesn’t matter. All that matters is health, family, and love. This journey has given me a deep appreciation for when I feel good and has made me stronger on the days I do not. For these gifts, I am so grateful.
My story is so much longer than this blog post but I figured it was a good way to start. I’m really excited to be sharing more of this with you, my beautiful community. I truly think that this sickness will be a blessing and will lead me further into who I’m meant to me. I’m not exactly sure what that looks like in this moment but I do know I’ve never been more passionate or interested in health, wellness, and spreading love from the inside out. The TRUE meaning behind why I started this blog and community.
I am so grateful for all of you and will be sharing more soon! XOXOXOX
I know exactly how you feel, it was the same situation with me and my symptom were worst now i have been feeling much better, after i startrd taking all my supplements, i was going with this for a long time and they never found anything, cardiologist neurologists and nothing, every night i felt like i was going to die, my heart literally hurt, my liver, my back, my head felt like it was going to explode, and when they finally told me what it was i felt like i won the lotto, cause I knew what was happening with me already, I knew what i was going to fight with i was thankfull, because they used to tell me there’s nothing wrong with you, it might be all in ur head, or misdiagnosed all the time. We will win this, God bless you always
I so relate to your words!! It’s the scariest thing in the world when you don’t know what’s going on and everyone says there is nothing wrong!! sending healing love and light your way. XX
Your Lyme story is my Lyme story! Often everyone’s stories and symptoms are wildly different. In December of 2018, I went from going 100 MPH to hitting a brick wall! Thank God for Lyme literate doctors, a solid tribe around me, and the good Lord for standing in the storm with me on my most confusing absolute darkest days! Healing from Lyme is so much more then physical…. the mental, emotional, and spiritual side of healing makes me love life more then I ever did! Who knew I’d ever be thankful for this twist in my story plot! Prayers and healing vibes to you!!!
I so feel this!!! <3 I too feel so incredibly grateful for this twist in my story and even the extreme challenges because they have made me SO much stronger!! The spiritual side of healing is such a big part of it and so important. Sending love your way!