About My Journey

Twelve days ago my prayers were finally answered. Lyme’s Borreliosis Complex. Three simple words, the last one proving to be more descriptive of the situation than I even knew. After a 5 hour appointment, the most thorough that I have ever been to with the most caring health professionals I have met, I had proof that it was not “in my head” or that I was just a “freak” case, a medical mystery. At the end of my rope, someone tied a knot for me to hold onto and now I was holding on for dear life. I had hope, something to live for and fight for, I wasn’t a quitter.
Following the appointment , life was again brought into perspective. I knew that everything was about to change, that I was in for a long, hard fight but even in the worst condition of my life, I was still ready to give it all I had left. Give me the plan of attack and I was ready! Armed with a “prep plan” for treatment, my body needed to get ready to quite literally “go to war” with a ferocious enemy. I filled my prescriptions, ordered my vitamins and supplements (keep in mind I was already on close to a dozen already), got my Epsom salt for detox baths. It was just the first step but I had to start somewhere and I needed to be “stable” enough to even start the heavy stuff.
As “complex” as the treatment plan laid out for me seemed, it also seemed to be quite simple. Follow the plan, stick to the rules and I would be better, never cured but better.
In the 12 days since my appointment, it has been nothing but simple for me and I know that the worst is yet to come. While some things have started to get slightly better others have gotten worse. I guess the enemy knew I was up to something and it wanted to let me know it was still there, making things worse. Besides my physical symptoms and my cognitive issues, I finally had to face the possibility of the way things might really go. For starters, the loss of my career. I had been off of work for three months already and with this new information, my only option was to medically retire from my job. That was a blow I wasn’t ready for. Even as sick as I have been, I still held on to the belief that one day, though I didn’t know when, I was going to return to my job as a public safety dispatcher.
I had been in public safety since I was 16 years old, when I joined a volunteer fire company as a firefighter, later adding emergency medical technician to my repertoire. I had hoped to apply and be hired in paid career fire department after I turned 18. In the meantime, I decided to become a dispatcher. I’d learn another side of the public safety machine. But injury after injury, illness after illness, I was unable to pursue a career fire department due to health issues. So I stayed in dispatch. Despite the politics that dictated my job, I LOVED it! I went from fire dispatcher, to call taker, to police dispatcher and at one point an acting supervisor (I was the youngest person to ever be an acting manager.) For 11.5 years I worked in dispatch, it became a part of me, changed me (both good and bad) and despite all the bitching we all did, the actual job – I still loved. I’m not sure if it has fully sunk in that its over. I know it, I’ve had moments where I accept it, but I guess part of me is still hoping for a return-though logically I know it won’t happen.
I’ve faced the idea of becoming unable to take care of myself, having to sell my house (due to medical bills), of having to return to living with my mother, losing my independence, losing my ability to drive. And while my brain, that never shuts off, fueled by severe anxiety, depression and obsessive compulsive disorder, forces me to face these issues much more than I’d like, a part me feels strangely at peace. Let me explain that because if you are reading this with a Lyme’s diagnosis or possible diagnosis you’re probably wondering how in the hell I can find peace in all of this.
I have been so sick for so long, going to doctor after doctor, suffering misdiagnosis after misdiagnosis, that just having an answer and a plan has set my mind at ease. I don’t remember what it’s like to NOT be sick, to NOT be in pain or fatigued. It is the first time that I’ve left a doctor knowing what’s wrong and how they intend to heal me with an actual treatment plan laid out before me.
I have chosen to make myself look for the positive in all this. I am lucky to be alive. Lucky to have a treatable disease, lucky to have friends and family willing to help me, lucky to have a job that allowed me to medically retire. I am incredibly thankful that I found my Physican’s Assistant! To her I do, truly, owe my life. She was the only one to step back, to look at all my “ailments,” disorders, and diagnoses and to look at the whole picture. I saw specialist who flat out said to me “I don’t think anyone is ever going to find out what’s wrong with you” or “I don’t know what it is” offering no other direction. Every doctor I saw had a new and/or additional diagnosis in their particular speciality. Perhaps, because my P.A. also suffers with LBC, she knew what to look for. She ran every test she possibly could and directed me to the facility that is ultimately treating me and is going to make me healthier. I will never be able to thank her enough!
I made an “inspiration door.” The idea originally started as a poster board filled with quotes to pick me up and to keep going in my darkest of times. But thanks to Pintrest, it ended up filling an entire door. I used the back side of a door in my bedroom. I could close the door and find peace in my room (perhaps my favorite room in the house, it’s just so relaxing.) I would stand (or on bad days sit) in front of that door and read the quotes and sayings aloud and it would make me feel better. I could close the door when I had visitors over and they would never know it was there. It was just for me.
I know, that despite what is coming, I have a chance to learn how to de-stress. My entire life has been chaos and stress, with only momentary lulls. I have the time to devote to learning to build even deeper relationships. Because of my job, I lost a lot of my innocence and became hard and jaded and bitter (we won’t even mention how my love life fueled that fire.) Most of us define ourselves, by our careers. We live in a twisted society so focused on material possessions that we have lost the root of what it is to be a human being. I am lucky enough to now be able to redefine who I am, what I want to be to people and to realign with nature and humanity.
So these are the things I have focused on. I have tried to hush the negative and be hopeful. I can do that now with a diagnosis. My brain has always gone to the dark side, pessimistic, doubtful, hesisitant of any good thing that would come my way. I have a few moments of panic, anger, rage, tears, anxiety and fear but luckily in most instances I have been able to stop it before it gets too intense. Its difficult to retrain my brain, but I’m trying even as Lyme’s continues to try to take it over .
I decided to start a blog, not because I wanted the world to know my problems (I like to keep the details to myself –its not anyone else business), not as a venue to bitch and moan and complain, but as a beacon of hope with insight into the real treatment of LBC, not what the CDC or NIH state definitively. If you have read any literature on Lyme’s you already know that it is as much a political disease as it is physical. I want to share my experience in hopes that someone out there, going through all the things I went through and will go through, will see it and it might lead them to an answer; I want someone to know after diagnosis what it can be like (we all know Lyme’s affects each of us differently and treatment response is different among individuals as well.) Maybe a family member or friend of a Lyme’s patient will see this and it will help them understand. I have asked my closest friends and family to help with this venture. I want you all to see it not just from my perspective but theirs as well. This is going to be a long road, but its definitely not as long as the one I’ve already traveled.
To all my fellow Lymers, know that you are not alone. Whether you were lucky enough to get early treatment or be a “classic case” or have suffered for years in the same way (if not worse) than I have, there are thousands of us out there. We have to fight for ourselves and for each other! I have the greatest of compassion for your pain and I wish the best for you in your journey.

2 Responses to About My Journey

  1. Kara says:

    I’m very proud of you for starting this blog to document your journey… I love you!
    “I can be changed by what happens to me. But I refuse to be reduced by it.” -Maya Angelou

    Like

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