Fear THIS

I was talking to a new friend last week about fear, having just watched Divergent with my roommate and being in the midst of another year of Delusion. If you are unfamiliar, in Divergent, people are placed into a video game-esque simulated situation within their own mind, where they must confront and conquer all their greatest fears, and Delusion is interactive horror theater where the audience must participate in order to advance the story. My friend mentioned the usual situations, like being trapped inside a car that is sinking in a lake, and then turned the conversation on me. The only thing that came to mind was getting sick again.

Most people fear outlandish or extraordinary circumstances that are highly unlikely and that they will probably never actually experience. My fear is something I've lived through. Something I'm familiar with. Something I'd be horrified to live through again.

And it has been on my mind, because my stomach felt ucky for over a week, which always kicks me into survival mode. I got it checked out, and, surprise, it's because I'm not eating the things I should be eating. I've gotten a little lax in my diet, and that's just inviting this junk to come back, so I'm cutting back again. Way to go, Genius.

That being said, I'm now realizing that what I told her wasn't the whole story. Yes, I'm afraid of having to tailor my life around this illness my whole life and I'm afraid of it always being in the back of my mind. But, I'm more afraid that I'm becoming bitter and resentful about it, and I'm afraid that I was actually a better person when I was sick. It's amazing how thinking you're dying changes your perspective.

Some of my closest friends have taken to jokingly point out when I say I don't like something, and it's upsetting to think that I've become one of those negative people. I've always been honest with my feelings, but I was never this vocal or curt in my life, even when I was in immense emotional or physical pain, and this is not who I want to be. I think I got to the point where I had nothing left to lose, and was so embittered about people not saying the things that needed saying when they had the chance, that I let my tact and grace filter out with the toxins in my blood, and now I'm left with a toxic viewpoint.

I thought I processed everything that's happened, but it's becoming apparent that I didn't and that is also scary. (I know it will take time and I'm working on it.)

I guess what I'm trying to say is that my fear is that I'm not allowing myself to be a better person after having lived through all this and if that's the case, then what was the fucking point? And even scarier, I know that there probably wasn't a point, because shit just happens, and I'm supposed to create a point, but I'm still so upset that it happened in the first place that I'd rather project that anger onto everything else in my life and poison the atmosphere around me than to fashion the point. And that is the scariest thing I can imagine.

I was given a second lease on life, and I'm happier than I've ever been in my life, so how dare I put out any negative energy! From now on, I'm going to stop saying I don't like things unless specifically asked and I'm going to start putting forth as much positive energy as I can muster. After all, you get what you give, right? I owe it to myself and to everyone around me. If I'm going to be a total asshole, then I may as well have just died. And that's probably the scariest thing I've ever written throughout this whole blog.



"Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones." -Thich Nhat Hanh

Feast or Famine

If you had to choose, would you rather know absolutely nothing, or know everything all at once? Six months ago, I chose to know nothing, resulting in six months of anxiety and anguish. Then, yesterday, I chose to have six months worth of information fed to me; which I promptly choked on.

Back in August, I chose to take a chance and "write my own life." My kidneys were functioning pretty well, considering. I was weaning off my heavy dose of steroids. I was brimming with hope. I started a blind six month clinical trial on September 30th.

Up to that point, I had been on a mostly need-to-know basis about my health. Just tell me what to eat, what medicine to take, what doctor to see, and I'll do it. I don't want to know numbers, or names, or reasons. It was just way too much for me to chew, so I didn't bother biting the bait. I figured, going into the trial, that what I didn't know couldn't hurt me. Wrong

The last six months have been nerve-wracking and difficult. In November, I experienced some kidney failure which screwed up a whole mess of stuff. That created some circulation problems which exacerbated my foot problems, leading to reconstructive foot surgery in December, which I'm still recovering from.

My trial ended a few weeks ago, and I had a bunch of tests done, including an EMG and nerve conduction study, my least favorite of all my tests, that made me cry, and which I failed miserably. I'll write about my jerk of a foot another day...

I was given the option of continuing the trial; going back to what I'd been doing before it; or seeking out new options. I sat on the decision for a few weeks. Mulled over the choices; made pro/con charts; and extended the deadline to make the decision, twice. I even took to Twitter and Facebook to help me decide: "I've been mulling over a big decision & can't decide. Should I choose option A, B, or C?? Pick one! I'll go with the most picked letter..."

Clearly, that didn't work out in my favor.

The D is compliments of a smart-ass

I ended up deciding that my old treatment made me feel like death, so that option was scrapped. I also decided that the current trial was too nerve-wracking, not knowing anything, so I scrapped that idea, too. I am currently seeking out new treatment options.

So, since I opted to end the blind study, I was able to go in and hear everything the trial entailed. Dun, dun, dunnnnn

Let me just say that I can't remember another time, ever, in my entire life, that I have been THAT angry. This is coming from someone who was a tornado of rage as a kid; from someone who was recently on heavy doses of steroids; from someone that used to make drunken scenes in bars. Hell hath no fury like me in that conference room yesterday. BUT, I didn't crush anyone's skull, I didn't even overturn my chair. (Look, I'm growing!) I didn't say anything more than "That is seriously fucked up (Yeah I said it, get over it) and I don't care to hear anything else you have to say. You can go now." I bet they still have stars in their eyes from the death rays I gave them.

"Irreversible kidney damage" "Circulation disruption" "Peripheral neuropathy" "Hearing loss" "Phototoxicity"

Well that sucks

As someone who already had underlying problems with my kidneys, nerves, hearing, and skin, it was very upsetting to learn that the main side effects of this drug were in my most problematic areas.

But, before you say what I've been hearing repeatedly. No, I'm not getting a lawyer. There are risks with any medication, especially the medications used to treat Aspergillosis. Furthermore, who is to say these areas aren't particularly problematic because of previous medications, rather than the infection, itself, to begin with. Even if I have my suspicions about what caused what, there's really no way to prove it. Last, I was paid a very large amount of money to participate in this trial, all of which was spent on my medical debt, and is long gone. I also signed a stack of paperwork that, in short, said "if we kill you, we're not responsible." I took a chance. It didn't go the way I'd hoped. Even if nobody is at fault, I can still be angry about it.

While I'm angry about the side effects, I'm not that angry at the medication, itself. I'm not even that mad at the researchers who developed it- it's all trial and error, and I get that. I'm only a little angry at the doctors for not telling me because they were just doing their jobs.

I'm mostly angry with the situation. Anger is a secondary emotion; and in this case, it is a combination of loss of control, disappointment, and shock. I'm angry that I have to deal with this shit. I'm angry that even my doctors are baffled by this disease and how to fight it. I'm angry that it wasn't a miracle drug that was going to save us all. And I'm angry that I was kept in the dark about all of it, and left to believe that all the pain, and weakness, and loss of feeling in my hands and feet, and blood toxicity, and kidney failure, and ear infections, and surgery were not necessarily directly related to the drug (even though I strongly suspected some of it had to be). I'm angry that I'm just now finding out these crucial facts four months later. I'm angry because it's scary.

What I'm most angry about is the fact that I went through this process, and screwed up my kidneys and circulation in the process; that I had surgery, and am having an extremely difficult time regaining function of my foot; and that my fungus levels are basically the exact same as when I started this trial. So basically, health-wise, I'm worse off in most ways for doing it. And that hit me HARD. There are good things that have come of it and when my roses sprout up from this pile of manure I'll be sure to spotlight them. In the meantime, I'm up to my elbows in dung and too distracted by the smell to look for silver linings, right now.

Now, I'm the risk taker of all risk takers, and a ridiculously hopeful optimist, mostly to my own detriment. But, the risks I take and the dreams I make are on MY terms. Letting someone else take risks with my life, and give me hope when there is none, and telling me what to do, without me knowing why, is not something I am interested in doing ever again.

Now that doing another blind study is off the table, I'm open to suggestions. I have enough medication to get by for about another month and then I'll need to put another plan in place.

In the meantime, I've got this playing on repeat:

Crying into my rice milk

What is this?! Why was it not invented 3 years ago?!



*sigh*

On a side note: Dear Ear Infection, this week really isn't good for me. Can we please reschedule your visit?

You have such a good humor about all this...

"Look, in my life you either laugh or cry, there is nothing in between." Elizabeth Glaser

And so, I've been laughing...

I spent the first week or so after my sentencing(diagnosis) in complete shock and denial, and the next three weeks wavering between anger and feeling extremely sorry for myself. By the month mark, I thought I'd accepted things and was fine... You see up until very recently, my range of emotional vocabulary was thus: fine, not fine, and angry (I'm slowly learning to recognize and label other emotions I previously couldn't).

I've always been told/thought I had a pretty high threshold for pain, and physically I think I'm withstanding a lot right now, considering; but nothing prepared me for this overwhelming tidal wave of sadness that nearly drowned me yesterday. I knew at some point a not fine feeling would resurface, but I wasn't expecting the magnitude and sheer force I was blindsided with.

The thing is, in the past, I never managed my pain, I just disassociated myself from it. So while I may have experienced a lot of painful situations, physically, emotionally, spiritually, I never learned how to process and deal with any of that pain. I just sidestepped it.

I feel so raw and vulnerable, like an emo-chick entering menopause. A drink sounds like a really good idea right now. Two dozen donuts sound like an even better idea. Three boxes of It's-its sounds phenomenal! Something, anything, to get me away from this feeling, to get me away from me. But a drink isn't the solution. Stuffing my face full of donuts, or It's-its isn't the solution. Not feeling my emotions is not the solution. Learning to sit through and deal with pain in a healthy way is what I need to do. And I sure am doing a whole lot of sitting lately! (I sat for 3 hours and did a puzzle, start to finish, the other day. Holy cow.)



Someone recently told me that pain is beautiful... I told her she was full of shit. I do think pain is necessary for growth, though. This is a learning experience, right?

This illness is going to prove to be a good thing(it'd better!), in that it's stripping away all my defenses and pride and escape-routes.

Now, if I could just make it a day without bleeding from one of my orifices...