Recovery Is Lonely…

Living The Lyme Lie
6 min readOct 20, 2019

Three years ago I was living life. I thought I was healthy. Yes I was spending more and more time in bed after work and on my days off but I was also going through hell with my oldest, I had just gotten my life insurance license over the summer and was teaching classes about money and investments to women and trying to build a new client list for annuities. This while still running my full time business and managing a couple of employees. I’d had a pretty stressful several years — divorce, move, bankruptcy, sick parents, learning to date again, finding Kris and taking a chance on marriage again, raising a teenager that was putting me through more hell than I had my own mom at that age — this confirmed by my mother after I accused her of wishing this karma on me for being such a rebellious teen. We’d also just gone through a very traumatic presidential election. For the past 12 or 13 years I’ve become very politically active. I know what I believe in and I have a big voice that I’m not afraid to use anymore. Kris thinks the 2016 election was the last straw for my immune system. I was traumatized by much of our country.

Kris & I went away for Thanksgiving — the Mayan Riviera to be exact. We got a killer deal on a friend’s timeshare and had a amazing time exploring the east coast of Mexico. We spent Thanksgiving Day in Tulum and it was spectacular. It was also the last day of me feeling “normal” and not sick. The day after Thanksgiving I woke up to horrible spasms in my tummy. It felt like labor pains but higher. Like someone was taking my gut and literally twisting and squeezing at the same time. I could barely breathe. I spent most of that Friday either in bed or curled in a ball on the bathroom floor crying and moaning. By 6pm that night I made Kris call the concierge to find out where the nearest hospital was as I wasn’t sure I could last the night. Turns out the resort had an on call doctor who they sent up within 20 minutes — it was actually 2 doctors. They diagnosed me with gastritis, gave me a couple shots in the butt, a medication to drink and gave me strict instructions — no more alcohol, chocolate or spicy food. So much for enjoying the last couple days of vacation!

A couple days later we were back home in L.A. and I was preparing to go to a 3 day class in Colorado to learn more about the annuities I was gearing up to sell. I landed at 6pm and by 11pm I had swollen glands, a horrible sore throat and a fever. This was five days after I had gastritis on vacation. Prior to this I NEVER got sick. No flu, no colds, no sore throats, no normal sick — just extreme fatigue and weird migrating pains and migraines that I attributed to stress and working too many hours. Within 24 hours I was better and attended class and even received a reward for Rising Star as I really had been working my butt off. Kris was supposed to be on the trip with me but the morning I left he had an emergency at work and had to bail so I went alone. Being sick and alone really sucks and I’ve had to do this more times than I can remember over the last three years. You can’t expect anyone to just quit their life and take care of you if you crash for more than a few hours or a day.

I returned home angry that he’d “abandoned” me and that I’d missed the first day of class but I felt healthy albeit tired. A couple weeks later I threw a Chanukah party — this was the year that the first night happened to fall on Christmas Eve — I can’t remember this every happening before in my life but perhaps it had. Anyways ever overly ambitious and a lover of all things Jewish Holiday traditions and food, I made a feast. But I was exhausted — somehow existing through the party, being a good hostess but my friend the infectious disease specialist who thought I had Lyme for years — the one who I thought was crazy for even suspecting such a bizarre and “rare” and very east coast disease — was at the party. She saw I was struggling and begged me to let her test me. I said I’d think about it. The next morning, Christmas Day, I was sick again. Kris spent the day with his family and I spent the day alone in bed — it was the beginning of my next three years that continues to this day.

A week later yet again I was in urgent care — twice in two weeks. Again with flu like symptoms, fever, fatigue, pain….nothing to be done but wait it out.

On February 2nd, 2017 I humored my friend and spent hours in her office that night filling out papework, reading articles and answering a litany of questions. After reading the article with a paragraph of symptoms I lost my shit and bawled because I had a feeling she’d been right all along. The next morning I went to the lab where I kid you not they took 40 vials of blood.

Two weeks later my friend called and told me over the phone I’d tested positive for Lyme. In that moment life as I knew it ended. While I had/have a family who loves me no one really understand. I joined a support group and two weeks later a fellow member took her own life. I had entered an alternate universe that I will forever be in. No one understood. Some said they did, Kris tried to be supportive but let’s face it chronic illness takes a huge toll on marriages. The fact we’ve made is this far is nothing but miraculous. He has a temper, and is codependent and a fixer. I’m independent, don’t like being told what to do and even though I’m a proud feminist I’m still an old fashioned girl and want to be pampered and taken care of.

I was abandoned by family, by tons of friends, by my kids because they were angry at me for getting sick (yes I confirmed this as well) and my husband while he’s been wonderful in so many ways doesn’t have any inkling he’s abandoned me. I’m not allowed to complain or vent because I’m a bitch and I get yelled at and reprimanded and told what a bitch I am. He love me but this isn’t fair to him. He’s exhausted.

This week I had surgery for my deviated septum as I had/have a massive infection resistant to 12 antibiotics up there. Maybe this is is contributing to my fatigue. Kris took off work on Tuesday and had to leave to take my kid to school but he’s not assertive and he left without saying goodbye. I had to call him crying to get him to come back to wish me luck and hold me. I was terrified but I’m a #badass and I don’t want people knowing I’m scared. When he came back I don’t know because I’m assuming I was still in surgery that’s taking me what feels like forever to recover from.

And I’m alone. He went back to work 2 days later but worked from home while I was in bed so I didn’t get much attention. Today he fell asleep at 7:30pm and I’m alone at 10:30 wondering why I’m even alive because I have no life, I’m a huge burden and drag on my husband who can’t even stay awake to talk to me. I have no purpose. I’m tired. I’m lonely. I get it — he didn’t sign up for this but neither did I. He spent no time with me today execpt when I asked him to take me to the gummy store. I’m not allowed to do anything for myself so he yelled at me but project all his anger at me. He didn’t talk to me all day and tomorrow he’s visiting his mom 2 hours away so I won’t see him all day. I honestly don’t know what marriage is supposed to be anymore because it’s not romantic and roses and unicorns. I’m a person in pain with a cast on her nose sitting her all night ALONE because I’m not fun enough to keep my husband awake anymore. I’m a sick boring loser. This is what my life has come to in three years.

Man, I’m lonely and it sucks.

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Living The Lyme Lie

Rockstar business owner who is in the process of launching her own fabulous skin & body care line all while unknowingly (till 2017) living with Lyme Disease.