Hey,

I’m Lexi. I am a daughter, a sister, a friend and like many others, a chronic illness warrior.

I have been battling with Mastocytosis, Multiple Chemical Sensitivity, and was diagnosed with late stage Lyme Disease in August 2016. I have since developed POTS and Osteopenia throughout my spine in addition to other multisystemic complications. I have made it my focus in 2017 to regain any aspects of my health I can while trying to enjoy life to the best of my abilities.

My story is long and complex, regardless if you chose to read or not I want to thank you for being here with me & please know your support means everything.

“When we approach suffering together, when we choose not to hide from it our lives don’t diminish, they expand.”
– LUCY KALANITHI

After a rapid decline in my health in 2015, I developed a kidney infection and was placed on high doses of antibiotics in January 2016. After unresolved pain impairing my ability to even walk at times, the antibiotic treatment was extended. The months that followed were a complete blur of ER visits and indescribable pain. I was going into anaphylaxis nearly every time I ate and had a constant migraine. I begged for the days to end and the sleep to come quick because for a moment, it wouldn’t hurt so much to be alive.

 

In just 24 hours, life as I knew it changed and has never been the same since. In February 2016, as service went in and out between Golden and Revelstoke, I found it harder and harder to breathe. Little did I know this was about to be my reality for the next few weeks. After taking Benadryl and trying to ride it out, I decided to call 911 where they instructed me to take my Epipen and was taken to the hospital when the ambulance arrived. The week that followed totaled about 5 more reactions, the last being the worst.

 

The hospital room was blurs of bright hospital lights and nurses faces flashing between moments of darkness. I was fighting to stay conscious muttering that I was okay. I felt a few pokes on my arms for an IV and heard the nurse apologize to me saying she just got off mat leave and wasn’t as ready as she thought she was for a fainting patient. I think I smiled hoping she’d know that meant it was okay. I don’t remember much after that. I woke up covered in blood on my right side where my IV was and felt like I was hit by a bus. I was told they had hit an artery in attempts to get a needle in for the IV. I took a deep breath and sighed with relief that it came no longer came with resistance. With high doses of steroids pumped into my body, I was finally able to go to back to my own house, to my own bed, where I set alarms every three and a half hours to keep up on my Benadryl and continue to take the steroid. No more chances.

 

The next month was exhausting, but I made it. From the illness and medications, I was having migraines every day. My joints and bones ached and I was constantly swollen while battling fevers, kidney pain, faintness and irritability from the steroids. Each time I ate, my symptoms would increase ten fold. I was hungry all the time, but afraid to eat because I knew I would only feel worse each time with the risk of anaphylaxis. The trouble was, I still had no idea why. I could no longer hold myself up to shower or walk myself to the bathroom, or even pour myself a glass of water. I was devastated that I could not complete even the simplest of tasks and fell to the floor where it took much longer than I’d like to admit to stand back up. I was fortunate enough to have someone help me through these physical barriers at this time and for that I beyond thankful.
Time passed and my journal entries became less of documenting of my journey and more begging for the pain to end, begging there wouldn’t have to be a tomorrow. I started to question life’s worth when there was no longer joy, only pain and sorrow.

 

I was losing hope I would ever get better. Everyone around me was moving forward and I was stuck in this horrible place with no help from the medical system. They diagnosed me with things like idiopathic anaphylaxis and neurological disorder of the intestines and bunch of things that had no treatment protocol and got me no closer to a resolution. I was desperate for some answers.

 

Through a variety of food and lifestyle changes discovered through research and alternative medicine practitioners, I was slowly becoming less and less of a fried vegetable. For the first time in months I started being able to drive myself to my appointments with PubMed articles and case studies printed out for my doctors to review of disorders that fit my symptoms and potential treatments. I backed myself with photos, symptom journals and food logs that covered every detail possible. Through support groups and communities I located names of specialists I wanted to see, lab work I wanted completed, and I even started to put my foot down when they tried to prescribe me anti depressants and told them no, I wasn’t depressed I was sick and it’s impacts on my life made me feel low at times.

My once pitiful life was developing purpose once again. Not because a miracle happened, but because I quit feeling so sorry for myself and started doing everything I could in my power to improve my quality of life. I realized at the end of the day the only person who can really fight for you, is you. Yes I still had and still have bouts of anaphylaxis and horrible relapses, but I can still take steps every day to work on my quality of life regardless of the things I cannot control, which included my health.

 

It took months of ups and downs to isolate some of my triggers whether it was food, environmental, or relationships, yet I still don’t know them all. In August 2016 I was diagnosed with Lyme Disease, but truthfully my diagnosis didn’t change much more than adding another medication to the list and allowing me to focus my research efforts. Basically from years of having Lyme disease left untreated in my body, it has manifested and severely disrupted my immune system causing these reactions. It can no longer allowing it to distinguish right from wrong. I avoid my known triggers, but it often tends to overreact at its leisure regardless of what I do.

In August 2017 I had a bone marrow biopsy checking for Mastocytosis and hidden cancer. It came back clear thankfully, but the pain from the procedure lingers even a year later. Two weeks after I had my first seizure and I have been having daily seizures for 8 months now. It has been ever challenging as I trudge forward with a great deal of unanswered questions and a medical system that does not recognize Lyme, but I try to remain hopeful for better days.

I am incredibly thankful for the support of my family, my boyfriend, and friends throughout this part of my life and its entirety as well as the health care practitioners who have helped in every way they could. I am grateful for every single person who has chosen to stay a part of my life as it has evolved. I only hope that as the years pass we continue to learn and grow through the life’s challenges together and become our best selves. I know that my journey will be full of ups and downs, but I also know that yours will be too.

 

Today, I am stronger. I carry around bags of medications and supplements everywhere I go. I am on 34 different medications and supplements, seeing 4 main doctors, 12 other health care practitioners, and have had 18 anaphylactic episodes in the last year and a half. I travel regularly to appointments in Calgary and Edmonton for care I couldn’t find in BC. I am on wait lists (1-2years) for both a Lyme Disease Specialist in Calgary and the Women’s Complex Chronic Disease Clinic in Vancouver. I get tired easily and am almost always in pain, some days more than others, but I look back and can’t believe the progress I have made not only in my health, but also as a person. Now when I relapse and have to submit to being carried to the bathroom or rushed to ER, I know that is won’t last forever. My immune complications and treatment protocols constantly change and I am just trying to continue to find a balance with medication, diet, exercise, mentality and to live fully when I am well enough to.

Thank you for taking the time to read my story and share my journey with you. There is so much we can learn from stories if we open our hearts and minds and I would like to encourage you to do the same. Together we are stronger and wiser and can accomplish so much more. My goal is to regain my health and support others who walk similar paths and to encourage us all to slow down and really enjoy all life has to offer.
Love Lexi