New tricks

I don't ask for help much. It's the hardest thing in the world for me to do and something I'm really bad at doing. But you can't get good at something you never do, so I've been practicing more, mostly because I haven't had much say in the matter.

Turns out, you can teach old dogs new tricks!

Thanks to unbelievably supportive friends and family, who I recently went to for help, I was able to pay off my medical debt in San Francisco and have my medical care there signed off on. I can't begin to describe what a weight has been lifted from my shoulders. I've been ready to leave The Bay for a while now, but felt trapped because my health and finances couldn't afford it. I'm so glad to be done with my physical torture and blood treatments and moving toward new opportunities!

It's  been a rough few years and I've been really run down the past few months. I need to rest and regroup, so I'm headed to LA to play for  a bit and lift my spirits, then I'm headed to Texas for a bit for some R and R.

"When you're drowning, you don't say 'I would be incredibly pleased if someone would have the foresight to notice me drowning and come and help me,' you just scream." -John Lennon

“It’s not the load that breaks you down; it’s the way you carry it.” -Lena Horne

Holy Mother of Updates

I've said in several previous posts that I would expound on various subjects later and haven't gotten around to it, yet. Oops. Life has been throwing me curve balls and having me jump through hoops, lately, so I haven't had much chance to keep people updated on everything. I can barely keep up with myself, these days.

Here's the skinny...

I can:
-Regulate my own body functions performed by my lungs, kidneys, intestines, etc. (HUGE deal)
-Jump (sorta- I have the landing down, the take-off is still kinda rough)
-Run (it ain't pretty, but I can kinda, in a weird way, do it)
-Ride a bike (I rode all by my self on Monday!)
-Stand all day long
-Walk for a few hours
-Go weeks without throwing up, getting a bloody nose, or coughing up small woodland creatures
-Be outside for more than 10 minutes without my skin cracking and falling off

I don't have to:
-Measure out every thing I eat
-Manage my blood sugar
-Do blood filtering very often

I still:
-Get winded easily
-Feel a buzzing in my toe at all times
-Have to watch what I eat
-Get infections a lot
-Probably can't eat that
-Have hope that I'm going to beat this thing

I am:
-The least moldy I've been (my fungus is dying off!)
-Getting physically stronger
-On normal Candida levels (my yeast is back in check!)
-Exhausted
-Quitting my day job (tomorrow's my last day)
-Starting a company with my business partner (we've been working on it for about a year, now it's kicking off)
-Moving to TX for a bit and then moving to LA at some point I told you big changes were coming...
-Grateful
-Blessed

I'm headed to Texas for a wedding this weekend, for a week. Then I'll be back in San Francisco for a week. Then I'm off to LA for a week or so. Then to Texas indefinitely.

There. Consider yourself updated.

Sick and Tired

It's been a rough few weeks. I'm so sick and tired of being sick and tired. I'm trying so hard to stay on top of everything, but I just don't have the energy to do it all of it. Ultimately, my health takes precedence over everything else. And keeping my health stable depends highly on two factors: sleep/rest and paying my medical bills. This unfortunately means that I am either sleeping or working most of the time, just trying to stay afloat, and things like friends and family, or expressive outlets, like blogging, get back-burnered.

I got some good news yesterday: My Candida levels are within the normal range, my Aspergillus levels are the lowest they've ever been, and I'm almost done with Physical Torture.

Some bad news came right along with it: I'm seen as "well enough" by the state to not require financial assistance for my medical costs anymore.

Cue the violins

SHIT

There's no crying in baseball

"There's no crying in BASE.BALL!" -A League Of Their Own

My Dad used to say that line to me when I was a kid. I never even liked baseball and I grew up with Ranger Stadium in my backyard. Oh I loved going to the stadium, but not because I cared about the game, or Nolan Ryan, or Pudge Rodriguez. I simply went for the food, of course! Nachos, Slushies, pretzels, and Ballpark franks? Yes, please!

Anyway, this post isn't about baseball, or Ballpark franks, it's about crying.

A few months ago, someone asked me when, if, how, I cry. I don't, of course! Ever. Because I'm tough. Liar.

Our conversation went like this:

"The post where you said you cried at the drop of the hat, and the hat drops often...that one stood out to me."

"You stepping on your hat, too?"

"Eh, I have big feet."

When I was younger, one of my friends asked my mom, a nurse, why we cry to express emotion: joy, sorrow, tiredness as opposed to just because something is in our eye or we are in pain. I don't remember her answer, and I'm sure studies have been done on the subject, but I think on a spiritual level it must have something to do with the "eyes being windows to the soul" and energy not being created nor destroyed. I believe that emotions are real, that everything in the universe holds energy that vibrates on some level. When we experience elevated emotions we increase the vibrations within us, and the energy needs to be releases somehow, creating tears.

I know I have cried most often in my life from anger, frustration, or unexpected joy because they were sudden floods of emotion that spilled over. I also think that when you are vulnerable, or worn down, or consciously connected to your emotions, you cry more, which isn't necessarily a bad thing. I have been all three lately, so the emotions have come pouring out.

And I think I needed to let it out, still need to let it out. And, luckily,  I have no plans to play baseball anytime soon.

Hallelujah Healthcare Reform!

Two months ago, I voiced some of my opinions on the healthcare in our country. Two years ago, I wrote about my frustrations with being denied insurance repeatedly.

I'm happy to know that our president and the majority feel the same way, as today marked the passing of Obama's new health care reform law.

The biggest clincher in the new law, for me, is the fact that now insurance companies cannot discriminate or deny coverage to those with underlying conditions. Obviously, those are the people who need it most, and instead we have been repeatedly kicked while we're down.

I was just venting to my dad and best friend last week about how trying to stay on top of my medical bills is a full time job, in addition to actually BEING sick, which is another full time job, on top of my actual job. What happened to taking care of the sick and injured?

I'm eager to see how this all unfolds and I hope things turn for the better.

So Now What?

So since the blind clinical trial crashed and burned, this time around I'm calling the shots. This week, I went back to a medication I've used before called Voriconazole. We know it works, so I'm taking it as a buffer for a month and then I will start a new medicine.

Voriconazole works, but it also makes me feel like total, utter, poopy-shit. When I used to get it intravenously, I was walking roadkill. Taking it orally was a little better, but not by much.

I selectively forgot about that small detail, but was quickly reminded. My stomach feels like it's on a spin-cycle and if my joints were peanut butter, they'd be the crunchy kind.

I spent all morning in the fetal position in my bed, watching All My Children clips on YouTube; and all afternoon in the fetal position on the couch, cuddling with a five year old, listening to Sara Bareilles. If I can continue doing that for the rest of the month I'll be set!

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:

I don't want this

"I just want to go kayaking in the Florida Keys, get a black lab, grow tomatoes, have a life. I don't want all this craziness. I don't want this insanity. I'm really sick and tired of it... When you do not have your health, nothing else matters at all." -Dry, Augusteen Burroughs

PT kicked my ass today. I was having such a good morning, too. The sun finally came out of hiding and I got to lay in the grass, under a giant redwood, with a baby on my side, gazing at the clouds, listening to birds professing how awesome life is...then, the clouds of reality crashed in and choked the life out of those disillusioned birds.

Apparently the steroids cause muscle weakness? This is a trade for improved nerve function, which will make it easier to build the muscles back up...blah, blah. I stopped listening at that point. I don't need yet another explanation of why this aspect of my life is hard and how it's for the benefit of some other arena. I'm frustrated. And in pain. And turning green.

This isn't my life. I didn't sign up for this. I don't want this.

I want to eat a real pie, backpack through Joshua Tree, swim under a Costa Rican waterfall, sleep under the African stars, ride bikes with the kids, and eat my weight in BBQ.

I'm going to do it, too. Even if it kills me. Dare to tell me I won't, I can't...I'll do it twice, just to show you.