Saturday, June 22, 2013

The girl who cried Lyme (spoiler: it is still Lyme)

Sam and I were talking the other day about how hard and long this process is and how it feels like I have only just begun. I have been asking for outside help for about 9 months and I feel like, well, I feel guilty. 

I have zero reason to feel that way. I know that. I recognize that only through opening up and accepting vulnerability can I grow and fight this disease. I think maybe that part of the problem last year with disbelief over my situation in others began because I never told anybody just how much, how badly I was suffering. I hit rock bottom. Sometimes literally, passing out on the sidewalk or pretty much any other location while trying to convince myself that I was fine. I was normal. Everyone must hurt, nobody complains though so I wouldn't either. 

Aye, but there is the rub. Not everyone, in fact, most people don't have that kind of suffering. I didn't know that. Now, I'm not sharing this to complain about how bad I have it. I merely wanted to explain what happened. Like a mouse trap, you pull back and hook that metal piece storing the potential energy. That is what I am doing every single time I leave the house looking normal, acting normal, or really any activity. The problem is that before last year, I could control (for the most part) when the trap became triggered releasing the kinetic energy. I would go home, actually pass out, not just fall asleep and tremor, come to crying out in pain etc. 

There are a few options when it come to antibiotics that kill Lyme. One is doxycycline. So when I was working as hard as I could and spending the other 14 hours recuperating and resting to gear up for the next day, I was mostly getting by. But then I got a UTI. I was put on Doxy. I herxed*. I herxed so hard that it became impossible to hide my symptoms and I became more reliant on the people around me for basic things like cooking, cleaning, bathing, and assisting with the fear that came from the dementia. For the first time in my life, I was not only dealing internally with my poor health stealing things from me that I loved, but I couldn't hide it anymore. The trap was triggered and it came down hard. 

I can truly understand the argument of, "well, she was fine until..." or "she looks fine". I am working on figuring out a way to video document some of my worst symptoms. However, that is particularly hard to plan. These days, it is much harder to reset that trap. It takes so much energy to load that spring back. 

So here is where the title of the post comes in: I cried for help a year ago. People get busy. People forget. I do not begrudge them in the least for living their lives. I envy them occasionally, but that is beside the point. Metaphorically, about a year ago, I cried wolf again and again. Now his teeth are deep in my leg. I cannot move forward without help. And I need more help than I ever wanted to admit. I remain hopeful. I know that getting the money to not only provide treatment, but safe and comfortable housing throughout, I will beat this. I will return to health. At this point real health is a dream as I don't actually remember it. My goal is to go on a work trial period in about six months. That may or may not work as I hope, but regardless, it takes about $2,000 a month to keep me moving forward. Much of it I need to raise now in order to secure continued living under a roof and ensure that I can continue killing the bugs (you know how doctors always tell you to not stop the round of antibiotics until the bottle is gone- that's so they don't grow stronger and resistant).

That said, I know many of you have given and shared with your friends, but I am hoping and wishing and praying that crowd-funding will work. There has been a Facebook page created dedicated to updates on my health and the progress of my fundraising. It is called Erin's Army. You can find it here: http://www.facebook.com/ErinsArmy. I wanted my own personal page to be more than just Lyme updates because there is so much more to me than my illness. Please feel free to "like" and share, comment or whatever your heart leads you to do. Maybe there is another layer/ larger circle of individuals who will be willing do help. 



*Herx- imagine the worst flu you have every had, while also being drunk and hung over and are suffering due to a bar fight from the night before that you don't remember. Actually a medical term, short for Jarish-Herxheimer reaction, caused by the dying off of the bacterium. They poison the body after they die. This can cause serious problems with organs that normally rid the body of toxins. Neuro herxing can cause dementia like symptoms and severe tremors and severe mood swings and personality changes. 

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