Saturday, March 31, 2012

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:

Beets me

Beet juice is disgusting! How can people drink this?

Thursday, March 29, 2012

Veni, vidi, vici

I went, I did 75(ish) salutations, I'm sore...

The Free To Breathe Yogathon on Sunday was rad! Who knew I could have so much fun doing yoga? Oh, you did? Well, ok, you were right.

The energy and love in that room was indescribable. When everyone 'Ommmmmmed' (is there an actual word for that?) together I saw double rainbows and unicorns, y'all.

Here I am with some of the cast of All My Children. In the middle, with the pink headband, is Stephanie Gatschet, who played Madison North (you may also remember her as Tammy on Guiding Light). She organized the event to honor her Mom, a lung cancer survivor.

You can see more pictures from the event here.

My team raised the most money, with over $5,000 and I was the second place individual fundraiser with $2,500. They are still tallying the final amount raised by the event, but we've estimated close to $20,000!

Thanks to everyone who supported my efforts and/or donated. It was such a great day with rad people to benefit and wonderful cause!

I can't believe I'm even saying this, but I kinda dig yoga now and think I may keep doing it. Wait, what? Who am I?


Damn it feels good to be a gangsta

27 years old & wearing orthopedic shoes...

Saturday, March 24, 2012

Tomorrow, tomorrow...

...I'll Yoga, tomorrow!

Tomorrow is the big day! I stretched; I shaved; I am in bed at 8:30 on a Saturday night. This is serious.

My team raised $5,166, coming in as the top team. I personally raised $2,258 of that, coming in second for individuals. A girl who lost her dad to lung cancer raised $1,000 more than me- so I'm happy she came in first. I can't really compete with that

Thank you so much to everyone who has cheered me on and supported this cause. I'm looking forward to seeing how many sun salutations I can do tomorrow!

Monday, March 19, 2012

I lived to see 27!

Well, I made it to 27! I'm quite shocked, frankly!

For the past few years I've been writing lists on my birthday. For 25 I wrote "25 Things I've Learned in 25 Years." For 26 I wrote "26 Things Everyone Should Do In Their Life". This year, since I've been writing and checking things off like a mad-woman, I decided to do "27 Things on My Bucket List" x 2 (27 things I've checked off and 27 things I still hope to do).

27 Things That I've Accomplished:

Hiked to Half Dome

Learned how to make authentic Navajo fry bread on the reservation

Got a passport

Finished my Bachelors

Became a Certified Child Life Specialist

Got and stayed clean and sober

White water rafted

Designed a set for a play

Bouldered in Joshua Tree

Started a recycling campaign at age ten that still exists

Was published in a magazine


Went on safari and met a giraffe face to face

Experienced true bliss

Streaked in public

Had an in-person conversation with Patch Adams

Slept on the rim of the Grand Canyon

Watched a newborn take its first breath

Was there for someone as they were taking their last breaths

Moved to California

Ocean kayaked

Led a protest for Equality through the streets of San Francisco

Hitchhiked to Montana

Wrote down 10 things I was grateful for, everyday, for a year

Stopped biting my nails

Was an extra in a music video

Cliff jumped

27 Things That I've Yet To Do:

Camp in Yellowstone

Visit every state

Travel out of the US

Sky dive

Snorkel the Great Barrier Reef

Meet a sloth in Costa Rica

Swim under a waterfall in The Amazon

Sleep under an African sky

Finish my Masters

Live on a farm

Send my Grandma a postcard from the rocky coast of Maine

Finish writing my book

Learn stick-shift

Hold audience with an elephant

See the Northern Lights

Go to Brenna, Poland

Take a hot air balloon ride

Throw my parents a huge party for their 50th anniversary

Visit cathedrals/castles in Ireland

...and in Scotland

See the sun in the South of France that Van Gogh experienced

Get the tattoos I have planned

Backpack through Europe

Motorcycle through Thailand

See my niece ride a bike

Marry the girl of my dreams and have a huge kegger BBQ

Conquer Aspergillosis

"May you live all the days of your life." -Jonathan Swift

Sunday, March 18, 2012

Birthday Eve: Eats and Defeats

Bren-friendly birthday eats: smoothie, soup, and salad!

Bren-challenge attempted:

It didn't work out so well...Crash, burn, fail

This will be my next activity to work on after the Yogathon!

Saturday, March 17, 2012

And then...

So my trial ended on Friday. I found out a few things, I didn't find out others, and I was given some things to think about. I don't have much to share yet, but I can say that I'm doing okay and I have a few options for how I want to continue my treatment. I'll share once I've made my decision next week.

After leaving the doctor, the first thing I did was bleach my blonde stripe. I'm so vain, I probably think this blog is about me... I hadn't been allowed to bleach it for the six whole months of the clinical trial (thank goodness I was still allowed to use hemp dye on the rest of my hair during that time) and it was in sore shape.

Holy roots, Batman!

Also, thanks to the generous help of my family and friends, I met my $2,108 fundraising goal for my Free To Breathe Yogathon earlier today! My team has raised over $4,000, too! (If you want to see previous updates you can click the "Free To Breathe" label at the bottom of this post)

I'm still sore from my EMG earlier in the week, but I'm pushing through and am now able to do about 30 sun salutations!

In other news, we bottled our homebrewed beer "Make It Or Break It" the other night.

I obviously can't drink my share of the batch, so if anyone wants to try it let me know- there's a bottle with your name on it!

Speaking of beer, I hope everyone enjoyed their green Guinness today, and some corned beef, too! I had some cabbage- exciting, I know...

P.S. I had pie for breakfast today! :)

Birthday Pie!

My friend made me Bren-friendly (Dairy/Gluten/Soy/Sugar/Corn/Yeast-FREE) Apple PIE for my bday!

My first pie in nearly two years! Thanks Chief!

Thursday, March 15, 2012

It sucked, and then I cried.

On Tuesday, I had my EMG and Nerve Conduction study. By far my least favorite of any of the tests I've been through in the past two years.

The first time I had one, I didn't know what to expect, which actually was probably better. Ignorance is bliss! When they started shocking the shit out of me, I was so surprised I didn't have much time to react, I just went into silent shock.

This time, I KNEW what was coming, and was freaked out about it for days ahead of time. Anxiety and anticipation of pain always make it so much easier to deal with, right? Ugh

I didn't sleep well the few days before the test, which I'm sure didn't help my ability to cope with it, during.

They wanted to test a larger area this time, as well, which as you can imagine was just what I wanted to hear! The only way I can really describe what it felt like is for you to imagine having one entire side of your body tattooed, while simultaneously sticking your tongue in an electrical socket, while standing under a shower of rubbing alcohol. Now you know why I cried so much that my eyes were swollen.

Then I was up most of the night waiting for Doc and Marty to show up with the Flux Capacitor, since my body was charged to 1.21 gigawatts and I was ready to go.

I haven't really slept much since the tests, actually. Partly because my right leg, from the hip down, is extremely sensitive right now, and laying down causes it to scream obscenities at me, and partly because I am nervous about the test results tomorrow.

Today I don't really have to get out of bed, so I'll just be sitting around watching Soaps. A nice calm after the storm.

Wednesday, March 14, 2012

Pie love you

So, today is National Pi Day?! Didn't we just have National Pie Day like yesterday? What is with the string of National "Bren Can't Eat That" Days lately and why did I never know about any of these when I could actually celebrate them?

The only one I ever knew about was National Donut Day. And I sure did celebrate that one!

These are the pecan (that PEA-CAN, btw, NOT puh-con, as you may have been told) pies my Mama made over Christmas break. Aren't they beautiful? *sigh*

You know that feeling, after a loss, when you think back on "the last (whatever)" and think about how you didn't know it was your last time? You think about how you would have done it differently, or how you would have savored it more, if only you had known. But you didn't. You took it for granted, and now it's gone. You get all nostalgic and sentimental...

Yeah, I get that way about pie.

The last time I ate pie was the end of May 2010. It was chocolate. Good, but not near my favorite. I only had one piece. I should have had ten. Shoulda, woulda, DIDN'T.

When I think back, I rewrite it in my mind. I would be at the smorgousboard of pie: House of Pie. I would order a slice of every one of their pies. I would eat slowly and lovingly. I would praise the gods of pie. I would see God.

This is also what I will do if ever given the greenlight to eat pie, again. I WILL pass go, and I will collect every pie in sight!

Greens, ham.

Monday, March 12, 2012

I did it

I DID 13 FULL SUN SALUTATIONS TODAY! (Modified for my abilities a bit)

Friday I managed my first one and have been adding more ever since.

Congratulations are appreciated, but money says it so much better! ;p If you want to throw any at my fundraiser for lung cancer, in celebration, you may do so here. (Lung cancer kills more people than the breast, prostate, kidney, colon, liver, and melanoma COMBINED & your donations are tax deductible)

The event is on the 25th and I am trying to raise the last $400 of my final goal of $2,108 by the 22nd.

I'm elated by my progress and floored by the support I've received from everyone. THANK YOU to those who have donated. This experience has been a challenge and a blessing. I'm grateful for the opportunity to help others while also helping myself.

Sunday, March 11, 2012

Pinterest will be my demise

Dear Friends,

You may be wondering why I am not following you on Pinterest. It is only in part due to the fact that you only pin dream wedding ideas, babies in cute hats, home decorating projects, and stilettos.

The real problem is the pictures of food you continually post that make me want to slit my wrists. You see, you somehow manage to slip them into every one of your boards. No, your "food I want to make" board isn't enough for you, so you insist on dropping them like little bombs onto your other boards entitled "things I like" and "cute ideas." Reeeeal sneaky, Friend. I think it would be fine if more of my artsy, unmarried, childless friends pinned things, but let's face it, they're not the ones pinning things- it's the homemakers who want to make elaborate cakes for their kid's birthday and ruin my life in the process.

Being that, unlike on Facebook, I can't hide you, without your knowledge, to avoid being subjected to your nesting instincts, I am forced to unfollow you completely.

I mean, wouldja just LOOK at this stuff?!

And the pies, oh don't get me started on the pies...

There's only so much I can take!

So, if you value your own life, or mine, do yourself a favor and don't ask me why I'm not following you on Pinterest.


P.S. STOP posting pictures of emaciated woman with captions like "something to aspire to" and "motivation," and just go make one of those recipes and stuff it in your face. Thanks.

Friday, March 9, 2012

Dating 101

How to score a date when you have a chronic illness:

Tell potential suitor that you...

A) ...have a potentially fatal disease.
B) ...cannot eat ANYTHING, or drink alcohol or coffee; and that you hate tea.
C) ...walk with a crutch, so long strolls on the beach are out of the question.
D) ...cannot have sex with them because their yeast could kill you.
E) ...would love to do something with them that does not involve eating, drinking, standing, or walking.

Then just sit back and be pursued by a few girls that will make out with you in your car and then bail, or will take you out for Vegan once and never call again; and by absolutely nobody else.

Wednesday, March 7, 2012

A whole lotta updates!

Clinical Trial

Back in July I had a boat load of tests to see how my body was doing with the Aspergillosis. The results were promising so I decided to take a chance and participate in a clinical trial that started on September 30th.

The trial will be over on March 16th, so today, tomorrow, and Tuesday I'm having tests done to check my progress. I had bloodwork, an ultrasound, xrays, and a Flouroscopy today- piece of cake! Things looks really good, from what I could tell/was told. They can't tell me anything, definitively, yet

Tomorrow I'll have an MRI and CT scan- during which I'll take a nice little nap.

From the looks of it, I will not be subjected to a Barium enema or swallow, a Colonoscopy, a stress test, a Broncoscopy, or any probes this go round! (This week keeps getting better and better!)


Tuesday will be the fun stuff: Electromyography & nerve conduction study, during which I will sing show tunes to myself and try not to sob. Awkward

I've been turning my crutch around and using it as a cane part of the time. On flat, short distances I can walk hands free, but if there is any change in the surface, I need help. I've been mastering downhill with the cane-side, but uphill is still extremely difficult for me.

I made grand predictions on how well I would do with my foot recovery. Things haven't gone as well as I'd hoped. And it started out so promising, too!

I'm at the 3.5 month mark. I said I'd be ditching the cane and walking on my own by now. My doctors said I'd be ditching the crutch for the cane. Turns out, every once in a million years, I'm not right. Damn

I wanted to be walking by my birthday in two weeks. That is obviously not happening, so I'll settle for moving to the cane by then.


I'm working on the physical part. It's a lot of work and if it weren't for a fundraiser or incorporated into my physical therapy, I would probably not be doing it. Luckily, I love a challenge!

So far, I have raised $1,678 and I have two weeks to hit my final goal of $2,108. That's $430 more to go! My team has raised $3,316 so far! If we all hit our goals, we should hit $4,000!

I am overcome with gratitude to everyone that has cheered me on and donated to the cause. I am so very blessed to be surrounded by such supportive people. Thank you for being a part of this journey.

If you'd like to help me reach my goal, you may donate here. Every little bit counts!

*In other, totally unrelated, but equally awesome news: my niece is rad.

Tuesday, March 6, 2012

Ice cream = crack cocaine

"Could an ice cream milkshake hit all the same pleasure nerves (and addiction triggers) as crack cocaine? A new study from the Oregon Research Institute says yes"

I knew it!

Monday, March 5, 2012

Brand new ending

It has been a whole two years since I embarked on this journey and my entire world was turned inside-out and upside down.

Two years ago, I was fighting a raging yeast infection on my face and in every nook and cranny. Everything I ate came back out with a vengeance. I was five months sober and all the things I'd tried to drown with alcohol were floating to the surface. I was living off ice cream, pie, donuts, and candy bars because I had no idea what they were doing to my body and they were my way of dealing. I was in a relationship I wasn't prepared to handle. I was a mess in every sense of the word.

Mmm, birthday cupcakes at a Czech bakery in Texas.

A year ago, I was struggling through each day, gasping for air and cursing every breath. I was living on raw vegetables and measuring out every single thing I ate. I was taking about 50 pills a day, getting intramuscular steroid injections (Chernobyl via syringe) in my thighs, having my blood filtered, and sitting for hours long IV drips. My foot felt like it was filled with killer bees and stuck in a bucket full of cement. My everything hurt, All. The. Time. My steroid induced mood swings and memory loss led me to isolate myself to avoid embarrassment. There were days I felt more dead than alive.

I tried to live fully, but when you feel like shit all the time, it's hard not to long for greener pastures.

*Today my world was rocked, literally, by an earthquake that originated under my neighborhood (just a block from my house!), and also figuratively, by the arrival of my niece! Birthquake!*

These days, I'm in such a better place than I was last year or the year before. I have a better handle on my food and don't have to monitor it as closely. I'm allowed to eat more things than I used to. I don't have to test my own blood sugar, and I don't get thigh shots or IV meds anymore. I only take 3 pills a day! I rarely have my blood filtered and my kidneys aren't in meltdown phase anymore. I made it through the winter without a single respiratory infection. My foot, while still an asshole, is getting its act together. Aside from being sore from PT and yoga, my body doesn't scream at me like it used to. I'm wildly and utterly happy. Who is this girl?!

I can even enjoy meat! (From 4505 Meats, of course)

So six months ago, I began a clinical trial for an experimental drug. The end of that period is on the horizon. (March 16th) Tomorrow I meet with my doctors to find out what tests I will undergo over the course of the next week or so.

The results of those tests will determine a few things, such as what comes next in the game plan, if I can add more food, and ultimately who is winning: me or Aspergillosis.

To up the ante, my best friend informed me this morning that if I'm cleared on tattoos, we're getting some for my birthday. I haven't been allowed to get tattoos while I was sick since the risk of infection was too high, but I've been wanting one the entire time. If things are going as well inside my body as they seem to me, I should be able to get one. The pressure's on!

"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending." Carl Bard

Here's to whatever the next chapter may be and to the ending that is being constantly rewritten, may it be a good one.