What a journey this last year has been…. 3 or 4 months ago I truly didn’t think there would ever come a time when I’d be sitting upright and able to tell my story, let alone help others who are suffering similar horrendous circumstances with their health. I thought I was a goner. Looking back, I can hardly believe that I made it through everything that happened in these last 12 months. So much transpired. Words don’t really do justice in explaining the brutality of it all. A lot of people have asked me when I’m going to write a book.
I still feel like the only people who can come close to understanding the battle I was fighting are the fellow Lyme disease warriors who I met during my time in treatment, and other women I’ve talked to who also survived abuse in a violent home setting and are single parenting. Because of there being a select few people I can truly connect with about the circumstances that were causing my unraveling, the journey has felt very lonely and isolating. I’ve felt misunderstood and unheard most of time. This feeling of being misunderstood made me feel a bit resentful towards others at times, but I’ve worked through those feelings and have learned to be okay with it. There has still been an outpouring of compassion, even if there has been a lack of true understanding (I can’t expect someone who hasn’t almost died from a rare disease that set in right after giving birth to have any idea what that feels like, physically, mentally, and emotionally – it’s unrealistic) and I’ve also learned to cultivate a really solid relationship with myself on a level that didn’t exist before which is a major bonus.
I have been away from the outpatient clinic where I had been receiving M-F treatment for almost a month now. I ‘exited’ the clinic on January 31st, which marked exactly 6 months since I initiated treatment for neurological Lyme disease, black mold toxicity, and co-infections (Bartonella, Babesia, Erlichia and Mycoplasma). When you get Lyme, it’s not just Lyme – ticks almost always carry a slew of other infections.
There was some fear arising within me about not being at the clinic five days a week anymore. A lot of unknown. It can be hard to trust one’s body again after going through something like this in which every organ system starts malfunctioning. In the past, I always trusted my body – every day I felt super strong and full of life and energy. There wasn’t any physical experience or challenge that felt unattainable for me. That all changed in April of 2019. While I’ve regained a lot of my strength, I still feel vulnerable. But I have this knowing that no matter where life leads from here, I will get through it – nothing can compare to what I’ve already been through. Treatment was one of the hardest things I’ve ever endured. There was nothing that felt healing about it at first. I had to get worse before I started getting better.
When I first arrived at the clinic in August, I felt completely lifeless. All my vitality had been sucked dry by the illness and I was hanging on by a thread. My body literally felt like a torture chamber. I looked and felt like a walking zombie.
My cognitive function was so poor – I was unable to figure out how to scan my passport in the airport and I was mostly non-verbal because I couldn’t figure out how to put words into sentences. I was able to eat one full meal every week or so and even then, I wasn’t absorbing 90% of the nutrients from it and was losing 5 lbs a week. I writhed and wailed in pain throughout the night and my days were spent seizing on the couch and being carried to the bathroom. I was too weak to wash my hair or brush my teeth most days. The right side of my body was intermittently paralyzed. My eyes were so sensitive to light I couldn’t be outside- even with sunglasses, it felt as if I was staring straight into the sun. It felt like an ice pick was being plunged into the front part of my skull and up and down my legs with brute force- the worst pain I’d ever felt. Worse than natural childbirth. My resting heart rate was triple what it should be for someone my age and I was having potentially lethal cardiac arrhythmias – I wore a cardiac holter monitor around the clock for a period of time. My labs and correlating symptoms revealed that I was in multiple organ failure.
From April through July, I was in and out of 10-12 specialist and MD’s offices, as well as every type alternative medicine practitioner under the sun – naturopaths, psychics, shamans, acupuncturists, herablists. I was desperate enough to try anything and be assessed by virtually anyone. Everyone seemed to give me a different ambiguous diagnosis— chronic fatigue syndrome, fibromyalgia, anorexia, postpartum depression, ‘adjustment’ disorder (wtf is actually meant by that?), constipation, anxiety, malabsorption syndrome, multiple sclerosis, sinus tachycardia…. the list goes on.
Ultimately, I was told by most of the practitioners I saw that my symptoms were psychosomatic and that I was just going through a “big life change as a new mom” or “we don’t know what to do to help you – we could try another pharmaceutical and see what happens…” Being a Critical Care RN for years, having a fair bit of knowledge about the medical world, and knowing my body better than anyone, I felt completely disregarded and brushed off. I knew that I was sick. Really sick. And that something needed to be done rapidly but that I didn’t need to be trialed on yet another antidepressant. I wasn’t sick because I was depressed, I was depressed because I was sick and couldn’t function anymore.
When multiple appointments and ER visits yielded zero solutions or answers, I continued to physically deteriorate and lost all hope. After months of suffering, I was on the verge of giving up altogether. There was hardly any fight left in me. It took all the strength I had left to merely exist moment to moment with the physical and emotional pain I was experiencing. I had a living will drawn up and notarized. I wrote letters to my child and placed them in safe keeping with those I trusted most.
Friends and my mother alternated staying with me. Typically my mother took care of my daughter while one of my friends would care-give me. I was terrified to sleep alone because my anxiety was so severe. I was lucky to sleep for more than 1-2 hours a night for 6 months straight. Every night I was waiting for the next seizure- the next choking incident where I wouldn’t be able to swallow for a minute or two- the next episode of vomiting- the next bout of crushing chest pain and heart palpitations. It got to the point where my friends refused to leave me alone and were on suicide watch 24/7. Sometimes I’d ask if I could leave to “go for a walk” or “have some me time,” but their answer was always ‘no – I care about you too much. I’m going with you or you’re not leaving at all.’ I’d get angry. I’d scream, “Why me? Why the hell me? I haven’t been wasting my time! I’ve always loved life and lived it to the fullest and valued my existence and now this?! My wings have been stolen from me!” I know now that buried underneath the anger was immense grief. I was grieving the life I had lost.. the persona I worked so hard to uphold. Everything was crumbling around me and I felt powerless.
Today, I can say that I feel I am on the path to recovery and more myself than I have been since falling ill last April. I’m not having seizures and no paralysis (that was f*cking scary). Still working toward putting muscle and weight back on and my digestive system is still raw… I still have heart palpitations that come and go and some head pressure, but I’m able to sleep 5-6 hours a night and get through the day virtually uninhibited. I’m exercising some again, I’ve been able to go to the climbing gym and start building some strength and endurance back up, my cognitive function feels back to baseline, and most of all, I’m able to care for my daughter who is 13 months now and I’m capable of living solo.
I’m still doing some therapies at home outside of clinic. I take about half the amount of supplements and pills a day I was taking a few months ago (for a while I was taking close to 60 pills a day). I still have a PICC line in my arm and do IV fluid bags daily to help with dehydration and high heart rate. I have to pay critical attention to my energy reserves and be selective about how I spend my time and I have to be very conscientious of the food I put in my body as well as put extra effort into detoxing (the Lyme bacteria releases a substance called endotoxin when it dies off- causing systemic inflammation and pain if not excreted properly).
It’s unknown whether or not Lyme can be ‘CURED.’ It’s been labeled by some of the medical community as the infectious disease equivalent of cancer.’ It’s more plausible that it doesn’t necessarily go away forever, but can be put into remission after the acute phase of treatment, through proper supportive care and lifestyle choices.
It’s unbelievable to me that Lyme is this sort of ‘fringe’ disease that isn’t covered by insurance when there are thousands of people going bankrupt trying to treat it and some, including children, are dying because they cannot afford treatments and therapies.
I had no health insurance when I fell ill as I was unable to return to my nursing job when my 12 week maternity leave elapsed so I was deemed ineligible for assistance. Even if I had remained covered though- in this country, insurance only pays for 28 days of oral antibiotic treatment for Lyme disease. After that, you are on your own, regardless of how awesome your insurance plan is. This is unbelievable considering most people, like myself, require months or sometimes years of treatment before they start improving.
Because of the financial support that came in through GoFundMe and via mail, I was able to remain in treatment 1-2 months longer and make big gains. A hundred ‘thank you’s’ would still be hollow in conveying my deep hearted gratitude to you all. The support has been overwhelming. I am so blessed to have such wonderful people in my life from all over the world. It’s my hope that my experience and vulnerable sharings have provided someone out there with some inspiration or has helped others who may be suffering with similar symptoms with Lyme or some other chronic illness, to realize that they are not alone in their struggle and battle and there IS always hope.
‘So what’s next?’ is the question I’ve been receiving a lot lately. And my answer is typically ‘I don’t know yet’ followed by a smile. The other one is ‘When are you coming home (to CO)?’
I feel like I’ve been given a new lease on life. In many ways, ‘Tasha’ is back. Now that my neurotransmitters are working more efficiently, my personality is shining through again, whereas before, I literally couldn’t feel emotion. I was listless every second of every day (to give you a basic example, a normal serotonin level is within the range of 600-800 – mine was 28 when I started treatment). I didn’t smile for a long time. I didn’t laugh. I felt like a robotic statue.
At the same time though, I am a completely different person than I was prior to getting Lyme. Things I used to think were so important don’t mean anything to me now. I have a renewed perspective and world view. This past year was a rebirth in a sense. I’m standing on a fresh slate and it feels like an immense gift to get to choose how my story continues to be written starting now.
I look forward to finding a place to live in a community that represents values that are in alignment with my own… a place where it feels safe to raise my daughter… where we both will feel included and supported.
When I left CO to come here, I left a lot of other things behind along with it. I left an abusive relationship with my child’s father and simultaneously walked away from the house we had planned on moving into that I had designed and we were building during my pregnancy.. I was forced to resign from my job that I loved… Essentially, I packed what I could into two suitcases, and got on a plane. I didn’t look back or think, ‘I’m so sad to be leaving my home and community.’ It didn’t matter where I was living when I was as sick as I was. I also didn’t have the ability to see a future anymore. I was just focused on getting here and initiating treatment… 100% consumed by fighting to get my life back so that my daughter could grow up with a mother. Nothing else mattered anymore – my social life, my career, my appearance, my residence… when you’re on death’s doorstep it doesn’t matter if you’re living in a two story mansion or a shack… and nothing gets taken for granted anymore, like having the physical capacity to simply carry your groceries in from the car, or read a paragraph in an article and mentally make sense of it.
I’ve always been a visionary and once again am able to have big dreams and hopes for the future ~ one of many of those is to start grad school within the year to become a Family Nurse Practitioner and specialize in Pediatrics. I also plan to go back to working in the forensic side of nursing with Sexual Assault and Domestic Violence victims — this is near and dear to my heart and hits home now more than it ever did before when I was in this line of work- having lived through domestic abuse in my own home last year. I also want to act as an advocate for people with Lyme disease in some way, and contribute to raising awareness. In a sense it feels like this is already in the works, as so many people are reaching out to me with questions and are desperate for encouragement after reading the news-story in the Durango Herald and online.
Florida has been…. well, it’s been a ride! It has been a nurturing place to rest and reset. Being here has reminded me how much I love the ocean and how healing it is. On some of my worst days of treatment, I’d go sit on the beach and watch the tide ebb and flow while I’d cry it all out. The ocean helped me relax and surrender into my vulnerability… to accept what was happening. It cradled me during the times I felt utterly alone in this battle and its vastness helped remind me that my afflictions and problems are all relative in the grand scheme of life. Being here has also made me realize how beautifully diverse the Southwest is, and that a big piece of my heart is still there. I always used to say, “home is wherever there is a mountain to climb!” My heart is definitely calling for some mountain and desert medicine.
Thanks to those who have supported me, believed in me, encouraged me, and listened to me. My appreciation is limitless.