Managing.

Probably the most difficult thing about dealing with Lyme Disease, is learning how to manage everything else in your life. What do you do when everyone else is going on with their lives, but it feels like you’re forced to stay still? How do you stop the negativity from consuming you?

Luckily for me, I have been quite stubborn all my life so that helps in some ways. Unluckily for me, this has also made my progress much slower than it should have been. I refused to believe I had Lyme Disease (my levels were off the charts), I refused to take medicine (that would admit I was sick), I didn’t take my medicine properly (waste of time and money) and I threw temper tantrums when I had doctor visits in NY (what am I 5?!). Luckily, I have one person in my life who has ALWAYS cared about me and my health more than she cares about herself: my mother. I don’t tell her nearly enough how much I appreciate, love and am truly grateful for that woman because she honestly saved my life. I definitely not near 100% healthy, but without her I am certain I would be much worse off. [Thank you mom].

Yet there are some things moms just can’t do for you or can’t understand. How do you explain to all your friends and teachers that you just can’t move from your bed, not because you’re lazy but because simple activities make you too exhausted to even want to move. Weekend comes up.. party time! Do you tell people you aren’t drinking because of Lyme Disease or do you make up an excuse? How do you explain to your roommates the necessity of sleep or your little tics without coming off as a weirdo? Or even try explaining the process of your medicine?

Add a boyfriend into the picture. How do you manage your emotions when you don’t even understand why you’re having them yourself? How do you not get jealous that he isn’t sick, he can go out whenever, he gets to enjoy life when you feel like you can’t?

At times, you can feel so alone. No one understands the problems, unless they’re going through them. Nothing looks like it’s going to get better and you feel doomed to this life you don’t want or didn’t choose. But it is so so important that when all the negativity starts rising up, you have to stay positive.

That’s about where I am. It’s not easy, but what in life worth having really is? Positivity is the shining light at the end of a very dark tunnel. Instead of feeding into the ‘dark side’ of me, I immediately try and think of anything positive. I try and constantly surround myself with positive people and do things that make me happy. I love to laugh, dance and sing (what girl doesn’t). I am also obsessed with music lyrics and quotes. I hang them all over and when I am feeling down, I force myself to read them and remember there’s people who have it worse and that there’s more to life. I will get through this.

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Hello.

I have been telling myself for awhile that I would start a blog to help with recovery and the millions of thoughts that I constantly have floating around in my head. But I guess I put it off for so long because one: that would make me admit to myself that I am actually sick. And two: I could no longer use the excuse “I don’t have time”. But a series of events in my life have pushed me into a corner and I always liked to write so I’m hoping it will be therapeutic. So hey, here it goes. No time like the present.. cliche much?

I’m Jen. Last name saved for personal reasons.. but I’m sure there’s an easy way to find it out. I have Lyme Disease. I realize that this isn’t as shocking as saying I have cancer, especially since information about the disease is relatively unknown. To be honest, I barely know any of it. But that’s because of my refusal to admit that I’m actually sick and ‘not normal’, as I have done for so long with this disease. My mother is a wealth of knowledge as she has immersed herself in the subject ever since both of her kids got diagnosed. However, there are definitely times that I wish I did have cancer instead. But what sane person would really wish for something like that right? I read somewhere that if everyone through their problems in a pile, you would go to pick yours back out after seeing everyone else’s. Sometimes I wonder how accurate that truly is.

Anyway, I digress as I typically do. Lyme Disease is something that I have, which is not contagious (as many people surprisingly ask me). However, it is not something that I am trying to let consume me. I went undiagnosed for 8 years and as a result I have a rather long fight ahead of me. For about two years I jumped from treatment to treament, and while I am still trying to nail down the exact protocol, I am finally trying to be a little bit ahead of the disease rather than lagging behind. Unfortunately I have a lot of catching up to do.

Besides the whole disease part of me.. I am also an advertising student about to graduate. Exciting but also a little terrifying. Especially when everyone keeps telling you not to grow up! I have big dreams in my head, most fueled by movies and TV shows, and hope to really make a name for myself. I want to be memorable and wonderful. I know I’ll be leaving this world inevitably, but when I do I want to at least leave something great behind. In a good way – not the everyone knows you for all the wrong reasons way. I’m still trying to figure out exactly who I am and what I want out of life. So maybe this will chronicle my journey and I’ll eventually nail some parts of it. Here’s hoping.

“It will never rain roses: when we want to have more roses, we must plant more roses.” — George Eliot