Project Download

It has been, somewhat harshly but nevertheless honestly, brought to my attention that certain perceptions have been given over the last few months. In light of that, I'm going to take this opportunity to tell you each and every thing that has been going on and give anyone who wants an opportunity to ask me something or even accuse me of whatever to do so.

When I got the money in my Reality Charity, that meant I was able to start treatment. What kind of treatment? Gamma knife radiation. Almost a full month, 2-3 times a week and while there are worse kinds of radiation out there, let me assure you that this wasn't fun.

Between that and the daily tonic clonic seizures, my best friend and boyfriend had to take time off of work just to take care of me, because I've been unable to take care of myself. Remembering to take medication, transportation to and from appointments, middle of the night visits to the ER, making sure I don't take too much pain medication, etc. In fact, he is just going back to work next week and is only doing so because he has to. A few close friends are going to be taking shifts in assuming part of his duties.

Why haven't I had surgery yet? That's a really good question and one I'd like an answer to more than anybody. First, the surgeon wanted to isolate the cause of the seizures and stop them before cutting into my skull, something I'm actually kind of grateful for. I went into the hospital for three days where I was hooked up to an EEG, videotaped constantly and had to ring the bell for the nurse to take me to the bathroom. For various personal reasons, I have severe confinement issues and this was also not an easy thing. Especially since at the conclusion, all the seizure specialist could tell me was I'm not epileptic and anti-convulsants will not be effective for me. So, now the neurologist is at a loss and the surgeon is still dragging his feet. Am I pissed? You betcha. Do I feel lost and completely without hope? I can't even put it into words.

During all of this, as I previously stated, I was under the impression that communication with this community was being taken care of. That was my bad for assuming and not hounding more. I do apologize to anyone who might have gotten the impression I "took the money and ran." It was more a case of "taking the money and getting treatment."

I am not throwing a temper tantrum. I am not trying to shit on anyone that has supported me. I am simply exhausted, physically, emotionally, spiritually, you name it. I realize I have failed all of you and that knowledge makes me ill. I don't know how to proceed without continuing to feel like I'm failing you. I don't know how to come here every day and tell you I'm still here, still sick and still being bounced around like a damned ping-pong ball. I thought, more than anyone, this would all have been dealt with by now and I would be on the road to having a life back, a life that doesn't include being so sick, I sometimes can't make it to the bathroom in time. There, if that's not revealing TMI, I don't know what is.

So, there you have it. This is where I am and it's a very ugly place to be. Again, I'm sorry that things have been so fucked up in terms of communication, but I thought I was doing my best. I should have been doing better.

If you have questions, I implore you to ask them now. I don't want to give the impression that I'm avoiding answering, or that I'm being a bitch. I'm just doing the best with what I have and god help me, that's not much.

Okay, so apparently, someone has my password. Or something. I have no idea how this community or my personal journal got deleted and when I contacted LJ, thinking I had somehow managed to violate some ToS, they didn't know what I was talking about.

My account at Robin Hood Fund is apparently also compromised, which I've taken up with admin over there.

Anyway, moving on. There has been a severe lack of update and for that, I apologize profusely. There was a miscommunication between Matt and myself; I was laboring under the belief he was in contact with Dani and letting her know what was going on. Nope. *sigh*

Guys, I feel like the world's biggest ping pong ball. I did a seizure study at OHSU that was fairly inconclusive and the neurologist doesn't know what the hell to do about my seizures. The surgeon is a typical God-complex neurosurgeon and... you know, it doesn't matter.

I've received some emails, saying people are feeling I conned them. I'm sorry to anyone that feels that way. I haven't lied to or conned anyone, though I understand how uneasy people would feel after not hearing anything for almost three months. But please, have a little more faith in me than that.

Good news? More gamma knife radiation has eliminated the brain lesions, which takes the "life-threatening" portion of my condition significantly out of the equation. There are still some concerns and still some new issues, but I no longer wake up every day worrying it might be my last.

I haven't been at the computer much lately, those with any kind of messenger with me on their buddy list can tell you that. Most of my time is spent in the hospital, at a doctor's appointment, or in bed, sleeping off pain killers. I'm still hanging in there, by my fingernails, but hanging in there nonetheless. I still have faith that I'm going to have this surgery so I can have my life back, I just can't even venture to guess anymore when that surgery might be. Every time I think I know, one specialist or another knocks me back a peg or sixty.

Pain meds or not, I'm going to make sure I personally either update the community or ask someone else to do it for me from here on out. Again, I apologize, I really did think this was being taken care of. My main concern with not updating myself is being unable to respond to each and every comment I get, it makes me feel like an ungrateful ass. There's just so many different ways you can say "thank you" before feeling redundant.

Thanks for hanging in there with me, to those that have. To those who think I'm a big liar and a con artist, I understand. I'd suggest living one day as me, but I wouldn't wish that on anyone.

Take care of yourselves and remember to always look for love and light in this world.

Much love,
Erin