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The neuro-Lyme flare continues. Things are slowly quieting down, though. I'm about 50% less twitchy.

My family does not understand this illness, nor are they making any efforts to educate themselves. They seem to try to understand it, but I don't see anyone going out of their way to research anything...

I will say it again: If I had cancer..... they would be rallying behind me.

But I just have Lyme Disease.

So even when I mention dying...they look at me like I'm joking. Dying? You are dying! .... But Lyme Disease kills. It attacks your heart, your lungs, your brain.....

It's in my brain. I know it's in my lungs.

Sure I don't look seriously ill.... so I can't be that sick, right?

And I still insist on doing things I can't be that sick, right?


I need my therapist. Entering an angry grieving phase....and I need some help getting it all out and letting go. Holding onto anger is toxic. No emotion is meant to be held captive.... Emotions need acknowledged, looked at, and then let go of so that they can finish their full motion. When we stop them and hold onto them...refusing to let go... It causes blocks and walls that don't allow any emotions to flow.

So I need my therapist.

I know I don't have cancer or diabetes, which seem to be the only illnesses worthy of concern for my family. However, I have stayed awake for far too many nights afraid that I will stop breathing during the night and no one will notice. Afraid I will die in bed and no one will even think to come check on me until the dogs start freaking out.

The thing is, I don't want my parents to have to worry like that. I don't want to put that pain onto them, as I know they already worry. The reality is: I have those nights, not often, but I have them... and those nights scare me.

I know some feel I'm selfish and lazy. That I should do more, try harder, make an effort. That I like not having to work, staying in bed, and basically doing nothing..... This is not a life I'd willingly choose.

The thing is, their ignorance is not their fault. They only have the information the IDSA and CDC spout out about Lyme Disease, just like I once only had that information, as well. So they don't know or understand the magnitude of what this is.

They don't know I struggle to come to terms with the fact that I will never have children of my own, and may very well end up alone for the rest of my life. My sister, my cousins, they are all building lives and families... sometimes complaining about things I'd give anything to have. My family has petty squabbles and plays the "I won't see so and so" game, which used to not bother me quite so much. But now I see the pettiness in it all. There are grander things in life than hurt feelings.

Meanwhile, I am here day after day in endless pain - stuck in bed swallowing pills that may or may not help.... praying for laws to change and IDSA members to retire or die.... because my life is being wasted.... while they sit there refusing to acknowledge the truth: THIS is what Lyme Disease does.

Lyme Disease steals lives.

Lyme Disease cripples and destroys.

It does not discriminate, and it has no mercy.

I've had Lyme all my life, basically. But before puberty hit, before the other suspected tick bites happened, before my body surrendered and just had enough..... I had potential. I had a future. I had so many possibilities ahead of me. I had dreams and hopes and goals.

Now I just pray to make it one more year. Lyme Disease has taken away my "in 5 years" "in 10 years" aspirations.... Because I have no idea where I will be or what shape I will be in come 5 or 10 years.

Will I be better? Will I be able to work? Will I be able to have a life?

Or will I still be in bed? Will I be worse? Will I be perpetually trapped on this monstrous merry-go-round that never stops?

I'm a downer today....sorry. This isn't my giving up... Not by a long shot. It's just one of those days.

Trying really hard to find the joy.... but today is a day I just need to feel this... so I can let it go.

Today hurts.

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