From IF to Lyme

I feel like I have fallen down the rabbit hole of under-diagnosed and unsupported diseases. Five years ago I was faced with an infertility diagnosis that left me emotionally scarred and $30,000 poorer than when I started. Now I’m staring down the face of a Lyme Disease diagnosis, which, just might do me in both physically, emotionally and financially.

Who knew that Lyme Disease was one of those controversial diseases that even the CDC doesn’t fully recognize and understand in regards to treatment and protocol?

Sound familiar, infertility warriors?

Jesus.

Didn’t we just fight the CDC 2 years ago? Here it is, they are my adversaries again. This time, it’s due to the stupid way they recognize Lyme, and the recommended treatment protocols that they suggest and thus, pass down to the insurance companies.

My initial consult with my Lyme Specialist was $300. Cash. The labs I had drawn today (16 vials of blood, which made me pass out. Oh yes. The infertility blood draw warrior in me passed out COLD at the lab.) will cost around $1,000.

I’ve read that the treatment protocol that I will endure could be upwards of $30,000-$50,000.

I just can’t.

I can’t even begin to tell you how defeated I feel  –  and I haven’t even started this process yet.

I’m so scared. I’m scared that this diagnosis will be my undoing. I’ve dealt with too much and I don’t know if I have another fight in me at this point.

This morning I spent time reading about the initial diagnosis process and how the resulting Lyme treatment leads to a very high suicide rate in patients.

I can see how that is possible.

I’ve already been through so much. More than I can ever begin to articulate. And now, to get my life back, I have to shed out parasites and toxins for 10 months to 3 years, just to get a glimpse of my “old” self? Yeah. I’m not sure if I’m up to that.

When you live with Lyme you have 2 choices: you can either live with the day to day hell, and forget ever being “you” again. Or, you can sacrifice your family, your job and your financial future and give treatments a try.

I’m starting to finally reel from my diagnosis.

I’m sad. I’m angry. I’m frustrated that there isn’t a better way.

I’m scared that I won’t be able to physically endure any more torture to my body. 

I do what I can to summon the energy to move forward. But I never envisioned this – from IF to Lyme.

Lyme

It’s ironic. I started The Long Dark Hallway over a year ago to help me write through and cope with my battle of what I thought was clinical depression. Little did I know that over a year later, it would evolve into a chronicle of my journey with Lyme Disease – a disease that has robbed be of my being. I haven’t been depressed – I have had Lyme Disease. A disease that silently robbed me of my life and has gone undiagnosed for years.

I received my Lyme diagnosis last Thursday.

But like all major life events affiliated with Lyme, I didn’t have any major emotional reaction with my diagnosis. Instead, I heard the words, and kept floating. I stupidly assumed that my lack of reaction had to do with the depressive fog I have been living in for the past 3 years.

I quickly learned, as I started researching Lyme, that my floating reaction to life’s major events, is a common hallmark of Lyme.  The website Tired of Lyme describes Floating way better than my brain can comprehend right now, but here’s my best attempt. When something happy happens in your life, like the birth of a child, the change in seasons, or something that gives you a fond memory – do you get those excited butterflies in the pit of your stomach with the excitement and anticipation? I used to. I don’t anymore.

Instead, let me give you the most profound example of the Lyme-induced floating hell I have lived with. When my Daughter was born in 2010, after a long struggle with infertility, my initial reaction when the Dr. held her up for me to see was, “oh! that’s nice.” No emotion. No nothing.

Floating. The presence of the Lyme bacteria within the body has an extremely heavy and strong influence on the brain’s functions.

So many parts of who I am have been robbed because of the Lyme. I am a shell of who I once was. I don’t really “love” anything any longer. My love of writing = gone. My love of life = gone. I just want to feel something again.

Floating. I’m floating through my life.

I will do what I can to chronicle my long journey ahead. All I know is that the road is going to be absolute hell. When I first read about the Herxheimer Reaction or “Herxing” as it’s called, I nearly wanted to vomit. It sounds like a goddamn exorcism.

My treatment won’t begin until the holidays. I’m still unsure of what path I will take – but it looks like I will be getting a port, which will deliver high dose antibiotics through my body for around a year.

I’m scared. Or as scared as I can be while living with Lyme.

lifeonkstreet.wordpress.com/

Wife, Mother to a toddler and Infertility Survivor

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