Emily Trudeau, a model turned role model, shares her fight against Lyme Disease in a guest blog post. She epitomizes the term ‘invisible illness’ and reminds us that our outward appearance does not accurately portray our health or wellbeing.
Torturous and unexplained pain.
Depression and Isolation.
Harmful and incorrect treatments.
Countless false diagnosis’s.
Warring just to get out of bed.
These symptoms are a mere sampling of what Emily Trudeau, a victim of chronic lyme disease, has endured over the past eight years. However, Emily is not merely a victim of lyme disease, she is a fighting warrior against it. When all seemed hopeless, when all seemed lost, Emily did not surrender. She has continued to fight for answers and healing. Read Emily’s story to be encouraged and inspired as you learn about her battle with Lyme disease and how she continues to fight today.
I was finally diagnosed with Chronic Late Stage Lyme on December 1st of 2015 by one of the very few, if not the only Lyme Literate Medical Doctors in Rhode Island. I tested positive for four lyme specific bands and then again in February for an additional 8 bands. He suspects that I may have had it for 6-7 years based off of the extent of my symptoms. It came to me as no surprise considering I grew up in New England and had spent the majority of my life outdoors and in the woods dating because to being a toddler. I remember the feeling of absolute joy when I was diagnosed because in my head I figured that some antibiotics and eating right would surely make me feel better in a matter of time and boy was I wrong.
It all started when I was 16 (I’m 22 now) where out of nowhere I started getting excruciating headaches and chronic fatigue. On top of the physical symptoms I felt extremely depressed and anxious and I started isolating. I was in the doctors several times a month and they tested me for mono, strep, the flu, as well as anything that could be wrong with my blood such as vitamin deficiencies and thyroid problems and nothing came up. Then shortly after I started getting feelings of confusion where I would randomly disassociate and think that I was not attached to my body which is such a scary experience that I still deal with this day. I was referred to a psychiatrist and a psychologist and they said I had anxiety disorder and major depressive disorder but these diagnoses seemed so unlike me. I was a straight A student, in all honors and AP classes, I ran cross country, danced for a semi professional ballet company and had a great family and had never been depressed or anxious in my life. So I ended up doing a duel enrollment program to do my senior year or high school and freshman year of college at the same time just so I didn’t have to sit through 6 hours of class a day every day because I could no longer function in such a strict class room environment. I quit ballet and quit cross country because I didn’t have the energy to continue.
At age 18 my headaches were so bad that I could not make it out of my dark room most days. I went to one of the leading neurologist in the nation where they conducted an MRI and said I had white matter abnormalities that were inconclusive or could be associated to migraine headaches. Between that diagnosis and the past 5 years I’ve had an onset of such bizarre symptoms. I constantly get numbness and tingling in all of my extremities including my face, my muscles twitch and my joints lock, I have audial and visual disturbances where I can’t handle loud or bright places, I can no longer drive long distances because of that, in two years my vision has deteriorated from 20/20 to 20/60, I’ve had chest pains and heart palpitations frequently, night sweats, brain fog, memory loss, confusion, you name it. I was in urgent care or the emergency room several times a month to tell them what was happening and hoping they would find something. In my head it was either a brain tumor, an aneurysm, a blood clot, or heart disease and I convinced myself of that to no end even when every test came back negative.
Age 18 was an interesting age for me. I think this is when I knew there was something really wrong that no doctor was diagnosing. I started college, and shortly thereafter was offered model contracts in Boston and Providence, RI. Being apart of that lifestyle I occasionally indulged in alcohol with my coworkers and peers and without a doubt, every single time no matter how much or how little I drank- it took me 2-3 full days to recover. I told myself I probably just could not metabolize alcohol which was upsetting for me to realize but looking back now, it makes sense entirely as to why my friends could drink three times the amount of what I ever drank and wake up feeling great while I, on the other hand felt like I got run over by an 18 wheeler.
I’ve seen dozens upon dozens of doctors and specialist over the past 5 years and they attributed these symptoms to anxiety so started treating me with several medications that only made things worse (about 20-30 medications). These medications include Prozac, Lexapro, Effexor, Celexa, Abilify, Topamax, Depakote, Gabapentin, Hydroxyzne, Propranorol, Klonopin, Valium- just to name a few. After several failed trials of medications I started getting very down on myself. I was having extreme panic attacks multiple times a day and I could just feel my body shutting down on me as it got weaker and weaker. I thought that I was going crazy and that it was a matter of time before I was spending the rest of my life in a psychiatric hospital. My life was at a complete stand still. I had unhealthy eating habits because I barely ate, I wasn’t active, I could no longer drive or wake up before 2 pm, and when I even tried falling asleep it would not be until 3-4 am. I finally got so sick and tired of being sick and tired so I went with a holistic approach and started exercising very lightly, went back to ballet, took vitamins, did daily Epsom salt baths, added turmeric and apple cider vinegar to my daily routine as well as many vitamins and herbs. I then decided to try acupuncture because I was willing to do absolutely anything and up until this point none of the efforts I put in worked. I explained to my acupuncturist (Dr Sara Ryan of Acupuncture RI) what was going on in our initial visit and she asked if I had ever been tested for Lyme which I had not. She referred me to my LLMD who I had previously mentioned who I got into two months later and within a few days I had gotten a call saying I had Lyme. Finally- after so many years I was able to breathe and say okay I’m not dying and I’m not crazy. He started me on oral ABX treatment 3x a day for the next 18 months.
As of right now I am in my fifth month of abx treatment and I go to acupuncture once a week. I also workout every day that I can just to keep my body strong even if it’s just walking or a few simple yoga poses. I meditate every single day in order to stay connected to my higher power as well as to stay sane and keep the anxiety and panic attacks at bay. It has been a long journey with many questions and not enough answers. I’ve noticed an influx of symptoms every time I take my abx which I attribute to the herxing aspect of killing of the disease. By no means do I feel 100% better nor do I expect to because I know that this is a long journey of healing myself and nourishing my body and soul. However, I am blessed that I finally was able to be diagnosed unlike so many others in this world who are still at the mercy of this controversial disease.
Lyme has taken a lot away from me. One of the most disappointing parts of this disease was getting signed with an agency in NYC and not being able to fulfill my duties. I felt like I had let myself and my agents down. However, when telling them about my illness they were extremely supportive and gave me a month off to only focus on myself. I’ve noticed more than not people only want to help and it was always me getting in my own way with my ego wanting to pretend that everything was okay. Now I know I don’t have to be ‘okay’. Everyone in my life is extremely supportive and helpful and do the best they can to understand with what I’m going through which is everything I could possibly want. As much as Lyme has taken away from me, it has taught me so much about myself, life, my spirituality, how I treat my body, and how many amazing people I have surrounding me on a day to day basis. I am now so in tune with my bodies needs and I am constantly mindful of what is happening and what I need to do to fix it. I’m in better mental shape than I have been in an extremely long time. As hard as these past 6-7 years have been I have obtained these tools that I can use for the rest of my life and for that I am truly blessed.