Tuesday, December 27, 2011

Live like you're Alive

Back in May I proposed a "what-if you were dying" scenario and asked some questions about what you would do if you were given only a few months to live.

A few people answered them, and I loved hearing the responses. I had hoped it would ignite in me my own answers, but instead, it just led to some sleepless nights.

Recently, a family member had a reoccurrance of cancer that they had fought and triumphed over for years. This time though, sadly, they were only given a short time to live.

I started writing the answers to these questions at that time. I thought we had more time. I wanted more time. Unfortunately, it ran out.

That family member died on Christmas Day.

And so, because you just never know, here are my answers:

-Where do you want to spend that precious time? I've really been racking my brain, swishing this question around, delving deep, to come up with an answer to this; and am having such a hard time answering it. It's so loaded. I want to spend it everywhere: soaking up the sun in the south of France; under the canopy of the Amazon trees; jumping out of a plane and feeling like I'm flying, if only for a moment; kayaking down a mighty river; a midst a herd of giraffes on a Savannah; snorkeling The Great Barrier Reef...living. I want to spend my time dying by living out my dreams.

-Is there anywhere you've never been and want to go? The two places I've really always wanted to go are Uganda and Brazil. I've been talking about them since I was a kid. Honestly, if the opportunity arose, I'd go anywhere in Africa or South America. Other places of interest are Ireland, Thailand and Australia. I am also hoping to make it to every US State (I have 20 left). Any National Park is a must do, with Yellowstone and Bryce topping the list.

-Somewhere you want to go again? Yosemite, but in the winter this time, to see the Frazzle Ice.

-Where do you call home? Like the first question, I've spent a lot of time thinking about this lately. Actually, moreso. I've spent so much time mulling over this that I'm to the point of staying up late thinking about it, waking up early to think about it, and dreaming about it...and this is what I came up with:

Home is my best friend's ski-sloped nose. It is my Dad standing in the grass with the water hose in his hand and a faraway look in his eyes. It is my Mom singing along to Kenny Loggins in the kitchen. It is sleeping in my sister's room on Christmas Eve. Home is my god-daughter swinging between her mom's and my arms squeeling, her eyes on fire. It is looking at Christmas lights while eating bomb-pops and listening to *NSYNC with my childhood friends. It is my cat on my windowsill watching birds and squirrels, her tail's end flicking. It is a cathedral organ trumpeting beneath stained glass. It is a walk in the woods. It's the breath and spit of the ocean kissing my face and hugging my toes. It is a mix cd and an open road. Home, of course, is where my heart resides...and my heart is scattered and free, like the wind.

-What have you always wanted to do, but never got around to? Skydive, river kayak, see Africa

-Are there any fears you want to face? I'm facing them. AA and being sick has helped me do that. I give speeches in front of people; I talk about my feelings; I dance; I cry. And the greatest thing about it is that I'm finally free.

-What would you eat?! Oh man, what WOULDN'T I eat?! A huge juicy steak- rare, with bleu cheese; pie: key lime, blackberry, apple, strawberry and, peach to start; donuts with sprinkles!; my mom's meatloaf and mashed potatoes; pierogies with applesauce and my favorite sumi salad; a whole gallon of milk; Blue Bell peppermint icecream...

-Who would you want to spend time with? My Loves. They know who they are.

-Who would you not mind ever seeing again? No offense, but all the doctors and medical personnell. Most importantly: The Pharm Techs at Walgreens Pharmacy that have messed up my meds every three weeks for nearly two years. I am not exaggerating.

-Is there anything you need to tell someone? If I've learned anything from this illness and losing people I love, it's this: If you love them, tell them. So, I'm trying to do just that.

-Or the world? Should the occasion arise that my time here has run out, let it be known: That I considered it time well spent- the good and the bad; that I didn't take life lying down, even when it knocked me off my feet; and that I lived and loved to the full extent of my ability. Of the lives I've touched, I hope I've spread more light than darkness. I've forgiven my past and left it behind, and urge you to the same. Count your blessings and not your burdens. Be kind, but don't be fooled. Do everything you can, that you can, while you can. Love as big and as long and as hard as you can.

-Anyone you need to forgive? I've let go of anything that hurt me, it was too heavy to carry around any longer.

-Or apologize to? I can only hope I've rectified my wrongs. I've really done my best lately to do so.

-Any projects you need to finish? I have been taking photos of my feet for 5 years in hopes of making a coffee table book entitled "Wherever you go, there you are." I am also writing a novel, without a final title yet.

-Or start? I need to start making plans to get to Africa, is what I need to do!

I think the most important question, that I will now ask is: Why wait until you're dying to live out your life, your dreams, your goals? Why wait to spend time with your loved ones and show them how much you care? Why does it take dying for us to live, when we could be living like we're dying, every day?

"Whatever you want to do, do it now. There are only so many tomorrows." -Michael Landon

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

Thursday, December 22, 2011

Progress Report

What I was told I'd do:
- 2 weeks of bedrest
- 2 weeks of limited activity
- 2 weeks of moderate activity + physical therapy
- 6-8 weeks post-op begin bearing weight
- 3-4 months ditch crutches for cane
- 4-6 months ditch cane
- 6-12 months regain normal activity: walking, running, climbing

What I said I'd do:
- 2 weeks bedrest
- 2 weeks limited activity + physical therapy
- 2 weeks moderate activity + bearing weight
- 6-8 weeks ditch crutches for cane
- 3-4 months ditch cane + walk
- 6 months climb
- 6-12 months run

What I've done:
- 1 week bedrest
- 1 week limited activity
- 1 week moderate activity + physical therapy + bearing weight

Tomorrow marks 3 weeks post-op. I think I'll celebrate by standing. Take that!

"If you put your mind to it, you can accomplish anything." - Marty McFly, Back to the Future

Friday, December 16, 2011

Not taking it lying down

Ok, maybe a little bit. For a week I did.

Then, I couldn't take it any longer- so I took it sitting with my foot elevated to my head for a few days.

Then, I had enough of that. So, I took it sitting in the backseat of my car with my foot propped on the seat, on my way to LA, while Rideshare guys paid for my gas and drove my car. Genius, right?

Then, I spent a couple days in a theater, with my foot on the seat in front of me, watching one of my favorite actresses from All My Children preforming in a play with Mechanicals Theater Group; and sitting in a wheelchair mingling with her and other Soap stars and a rock-n-roll photographer/director.

Now, I'm saddled up in my wheelchair once again, on the train, headed for the airport to jet off to Texas.

I can really get used to this whole "taking it easy" thing. :)

Thursday, December 15, 2011

Friday, November 25, 2011


Last year, for Thanksgiving, I was hitching through Montana during a blizzard and soaking in hot springs. I had hoped to take another road trip somewhere, this year, but obviously my health didn't allow.

So this year, I did this:

I was flanked by dogs and a few close friends who made me Bren-friendly food.

(Top left: Bren-friendly dinner; top right: apple pie and pumpkin mousse I watched my friends enjoy; extraneous untensils; I can't eat that)

Good food, good company, good God I'm blessed!

"When I started counting my blessings, my whole life turned around." - Willie Nelson

Tuesday, November 22, 2011

Thank you for poisoning me

It's been pretty eventful 'round these parts the last few weeks. Hmm, let me see. I sat around; My kidneys decided to stage a coup; I napped; My kidneys continued to try to kill me; I laid around; My kidneys tried to nap; I napped some more...

I'm proud to say that today I was able to not only peel myself from bed, take a shower and visit two doctors, but I'm now sitting up writing this. We're making progress, Folks!

If you'll recall, a few months back I had a bunch of tests; started an experimental medication; and it was decided that we'd try to let my kidneys hold their own and cut back on filtering my blood. I now regret this decision.

Fast forward through a month of intense itching and a few months of doing well, to: EAR INFECTION! I swear, if anything kills me, it will be an effing ear infection! Like that one time, or that other time, or that other, other time, and then there were those times I did't report on it because I either: A) was dying, or B) was tired of talking about stupid ear infections, or C) knew you were tired of hearing about my stupid ear infections.

If C is the case, my apologies for boring you, yet again... but, they HURT. And they knock me on my ass. And they always bring something worse with them.

This time, they caused a reaction, that I don't even really understand but will try to explain. The infection caused my body to produce more white blood cells (to fight the infection); my kidneys that were already working really hard to hold their own got mad about the infection and stopped producing erythropoetin (produces red blood cells).

*This is where it got confusing for me*
Then, because my kidneys weren't filtering properly, my body started absorbing all the iron and zinc from my supplements, to make up for the low number of red blood cells (anemia), thus, disregarding essential vitamins like B and D. The high levels of metal in my blood, in turn, made me feel like I hadn't slept in weeks, when I was actually sleeping about 15 hours a day. This is because my brain was shutting down from iron toxicity. Yup, it's always a wild ride around here.

Oh wait, there's more! I also have this nerve damage problem. Which, started being a problem a year ago; and led to a scraper cane; and a million questions; and kept getting worse.

Here's what the bad boy looks like today

Pretty, eh?

Well, when you've got underlying damage to your central nervous system and then you throw a wrench of iron toxicity in the mix, what do you get? Loss of circulation to your limbs! And what appendage is furthest from your brain? Your foot! Aren't you loving this anatomy lesson?
And what happens when you don't get circulation to a limb? Loss of oxygen! And what happens when a living thing goes without oxygen? It dies!

I think you get the picture, here.

In conclusion, I'm getting my blood filtered every week, AGAIN; and I'm having surgery next Tuesday to reconstruct my foot and attempt to repair some of the damage done before it dies and can't pull it's weight anymore. Get moving, Dead Weight! They'll be fusing some bones, snipping some tightened tendons, tightening some loose ligaments, and trying to determine which nerves are damaged/dead. It's gonna be so much fun!

I've been waiting on and hoping for this surgery for an entire year and it keeps getting put off. I'm ready to walk and run and ROCK CLIMB, again. All it took was a little iron poisoning to get things moving.

Sunday, November 20, 2011

Egg Mcmuffin

Made for me by my bestie:

12 egg whites
1 cup Oatmeal
1 cup tomato sauce (or. in my case, freshly chopped tomato)
1/3 cup shredded cheese (nut cheese for me, obviously)
3 cups (ish) fresh baby spinach

Season with oregno, basil, pepper...to taste

Combine all ingredients. Spray muffin tin, and spoon mixture into cups. Bake @ 375 for 25 minutes.

According to her: "Very simple, and easy to do substituting. The only downfall is the taste without the concentrated tomato sauce, perhaps there's something else you can add? Also, if you're looking for more protein and taste, I'm sure you could use the entire egg instead of whites only: this is a non-fat version. Maybe you could add chunks of avocado, too! It's simple enough, it's worth experimenting with."

I thought it tasted great. Clearly, she doesn't eat what I do, regularly.

Thanks, Friend!

Wednesday, November 9, 2011

Let me let you in on a secret

I've had several people comment on how many things I do: how many pots I've got fingers in, how many concerts I go to, how much I travel; and ask how I am able to do it with my health being what it is.

Well, here's the inside scoop: I do what I can, if I can, while I can. If an opportunity arises, I take it. If I want something, I go after it. If I dream up something, I make it reality. I'm not promised tomorrow, and neither are you, so let's put everything we have into today.

As far are the pots my fingers are in: I've actually slowed down A LOT from how I used to be. I only work 12-20 hours a week, and even then kids are napping or I'm watching them play soccer or piano, while I sit around. This is prime opportunity to Tweet, Facebook, or read/write blogs/etc. on my phone. Sometimes I even visit the archaic practice of reading a library book!

When I'm not working, I'm probably having my body manipulated by a phyical therapist, while I sit; waiting for a doctor (what I'm doing right now, actually!), while I sit; getting an IV or blood, while I sit; or in bed, where I'm probably not sitting. While I'm sitting/lying I'm free to entertain my fancies through the internet, or draw, or write in my journal. So that's really why I'm involved in so many things: I've got nothing better to do and I like having things to do!

Concerts: I have friends that are musicians and put me on their guest lists. I used to go to live shows 1-3 times a week. Now I go to 1-3 a month. I just love music and it's cheap and abundant in The Bay Area.

Travel: I am great at finding great travel deals and I stay with people I know. You'd be surprised how little I actually spend when I travel. Also, you wouldn't believe how much money you can save on vacation if you just eat almonds the whole time!

How do I do all this with my health: I sleep 9-12 hours a day!

So, there you have it... "I'm gonna give all my secrets away."

Thursday, October 27, 2011


Apparently I forgot to mention I'm allowed to eat egg yolk, now and my friend nearly had a coronary when I ate one in front of her.

I was told I'm supposed to inform people of things like this and that I'm falling down on the job.

I was also asked to do more recipes, because I haven't done any in a very long time.

So, here I am giving you a recipe:

-Cover the bottom of a frying pan with olive oil and heat on a stovetop
-When the oil begins to bubble, crack an egg into the pan
-When the white of the egg is no longer runny, spatula it onto a plate
-Drive to my house and ring my doorbell
-Present said egg to me
-Watch me eat it

Friday, October 21, 2011

It's a date!

I got to drink this tonight!

A "smoothie" of rice milk, almond butter, vanilla bean, and dates :)

Back in July, the results of some tests led to me being ALLOWED to eat certain amounts of butter and dates. My excitement rivals a little girl's 1st trip to Disney, Y'all!

In August, I tried butter, resulting in less than desirable results. Barf

I've had some amount of butter since that day, but had yet to try dates until tonight.

Shockingly, they've remained in my person and have yet to make a reappearance...

*Side note: I now have 2 years sober. Everything I said last year still rings true*

Saturday, October 15, 2011

Testing 1, 2, 3...

The nitty gritty for those that have been asking:

On September 30th I started a six month clinical trial. It will go until March 16th, just a few days before my birthday (Happy Birthday to ME!). The trial will see me up until the 2nd anniversary of having Aspergillosis.

The trial is affiliated with The Center for Infectious Disease and Centers for Disease Control and Prevention, and is being conducted by doctors from Stanford and UCLA.

To answer some questions I've gotten, there is no control or placebo group in this trial. This new drug and treatment is being measured against the results of other current drugs and treatment methods (a lot of my old results come into play). With this disease, a placebo is not an option, as no treatment equals death. Yup

In that same regard, there was a preliminary group of healthy test subjects, to make sure nothing catastrophic happened, but healthy patients can't really test the drug because it only targets Aspergellius, specifically. I also haven't been told what, if any, side effects there had, as they don't want to imprint anything in my mind.

I'm 16 days into the clinical trial and here's how things are going...

-I've been falling asleep easily at night, which wasn't the case when I was on the steroids.
-I stay asleep all night and wake feeling refreshed!
-My kidneys are holding their own. (Struggling, but hanging in, nonetheless)
-I haven't had to have my blood filtered in a month
-I haven't had any horrific side effects (compared to the things I went through starting all my other drugs, this is HUGE)

-The skin in all my bends, folds and orifices itches like nothing I have ever experienced before (and I have eczema and have battled poison oak, so I know itchy). I've been told it's likely a Herxheimer Response which is actually a really good thing.
-I want to fall asleep at approximately 7pm now.
-I'm losing weight, again. Pretty much all the weight I put on with the steroids is falling right back off.
-I feel wonky every few days. I don't even know what that means, or how to explain, just something feels off. It's not good, or bad, just odd...

If I didn't answer something you'd like to know, feel free to ask.

I'm actually starting to feel a tinge of hope that this thing might work :)

Wednesday, October 12, 2011


Today I saw my oral surgeon for the last time! My jawbone is healing nicely and even though I have a sore in my mouth as a side effect of my new medicine, he says it doesn't look troublesome and can monitored by my infectious disease specialist unless it gets worse. Woot!

So I had my permanent bridge placed and got my new mouthguard today.

I just have to see my regular dentist in a month for a check-up.

What a relief. It's been quite the saga!

Thursday, September 29, 2011

Where in the world is Carmen Bren-Diego?

I just got back from a week away- and boy what a week it was!

I spent a few days in Chicago for a fan event for the soap opera All My Children's 41 year final airing. I got to meet and hang with some great people; including celebs, fans, press, fundraisers and promotors; as well as explore the city. It was an amazing experience.

Then I jetted out to NYC for a musical opening. Again, I met and hung with some really great people; including actors, producers, composers, fans, and a friend from college. I always love the time I spend in NYC. I also got to see live opera performed in Times Square, which was amazing. The musical was better than I expected and it getting rave reviews. It's called Effing Hipsters and it runs until Oct 8th. If you're near NYC go see it!

Traveling on my diet is often difficult and depressing, but this time I was so busy I hardly even noticed. I pretty much have my diet down to the point that it's becoming old hat to me. I brought raw almonds and my special oats with me, scoped out Bren-friendly restaurants, bought a bunch of veggies, and things worked out just peachy.

Heck, Mayor Bloomberg even bought me a drink! My that was some fabulously fancy water! ;p

I'm exhausted but I am so glad I was able to do this. I had amazing experiences. It was so nice to be away from reality for a hot minute: No doctors appointments, physical therapy or pokes; No children to corral. I did spent a lot of time and mind-space dealing with the aftermath of the robbery/identity theft, but thankfully with some ingenuity and help from great people I worked it all out.

I did my best to rest up as much as I could, but there was so much going on! After I finish this post I'm actually going to head to bed for the day/night (yes, it's only 1:30pm). The last thing I need to is to get sick right now.

Update:I had my 2 month jaw post-op appointment today and things look really good. I go back in a couple weeks for my permanant bridge placement and then I'm hopefuly done with the jaw/teeth debacle.

Tomorrow I start my clinical trial and new experimental meds. I'm nervous and excited and dreading and finger-crossing. And away we go...

Saturday, September 24, 2011

One stop shopping: Chicago

Getting my daily allotment of fruit & protein while on the run. So much to do & see in Chicago!

Saturday, September 17, 2011

Train Robbery

A week ago, someone broke into my home (of course they did) and stole a lot of my things, including my computer -with my external hard drive still attached; containing all my artwork, recent pictures, music, and most of my writing. Ugh.

They also took my wallet with all my credit cards, social security card, and check book, which has made the past week all kinds of fun with the phone calls, appointments, paperwork, etc. I've had to deal with. I can't express how much I hate the music they play while you're on hold...

The artwork and writing is what really hurts. It is moreso my identity than my bank account. I feel violated and sad because they took a part of me, which I know they just discarded without a thought. That is the REAL identity theft.

Seriously, they didn't even get anything of value to them, but they sure made my life harder. I would have gladly handed over $ to avoid the hassle they're putting me through with my finances. I'm sure this stress is great for my health.

I'm considering writing a book entitled 30 Things That Can Happen To You Before You Turn 30: My Life Exemplifying Murphy's Law. I think it could be a best seller.

I'm trying to look at the bright side of things:
-A new laptop is on its way
-I now have a nicer camera than I ever had before
-I know now to back everything up on an online database
-There are amazing people in my life
-This is great fodder for that best selling book I'll write
-Things are just things
-I am further convinced I can survive anything life throws my way

I've been robbed of pretty much every thing(material and not) that a person can be robbed of, in my life, and you know what? The past few years, I've learned that despite what life robs me of, I will not be derailed. This train just keeps chugging along...

“Sometimes the cards we are dealt are not always fair. However you must keep smiling & moving on.” -Tom Jackson

Friday, August 19, 2011

Just Because I Can't, You SHOULD

People often ask me if it makes me uncomfortable if they eat in front of me, or they'll apologize before eating something. Stop it, will ya?!

Eating is one of life's great pleasures. Just because my experience is a little less pleasurable now, does in no way mean that I want your taste buds to suffer, as mine do.

By all means eat the juicy piece of cake dripping with icing. In fact, eat three, please. I'll watch. This is better than a racy onscreen lovescene.

It took me a while, but I'm no longer bitter about what I can't eat and I don't need you to feel sorry for me about it either.

To prove it, I'll help your children make homemade ice cream, insist they pour an entire bottle of sprinkles on it and watch as they dissolve into a sticky, giggling puddle of pure joy. Who would want to deny them that? I gladly encourage it.

I'll even make you homemade tittycakes for your Bachelorette party (two of my close friends are getting married tomorrow. I introduced them. I couldn't NOT bake them a celebratory cake?!)

So the next time you feel a pang of sympathy for my lack of desert options, have one in my honor. It's the right thing to do.

Friday, August 12, 2011


A friend linked me to this article. My infectious disease specialist had mentioned this just last week and I wasn't able to find any articles at that time. Apparently they just released the info a few days ago (I guess I'm in "the know" being on the inside? Hmm)

It's interesting to think about. Stanford has some great programs going on right now. I'll be working with them when I start my clinical trial in a few weeks.

'Baker's yeast protects against fatal infections (8-9-11)

Injecting mice with simple baker's yeast protects against the fatal fungal infection, aspergillosis, according to research published in the Journal of Medical Microbiology. The work could lead to the development of a human vaccine that protects immunocompromised people against a range of life-threatening fungal infections, for which current therapy often fails.

Researchers from the California Institute for Medical Research, Santa Clara Valley Medical Center and Stanford University gave mice three injections of killed Saccharomyces (baker's yeast), one week apart. Vaccinated mice were able to survive high doses of Aspergillus – the fungus that causes aspergillosis. Mice that survived also showed a reduced infection load in their organs.

Aspergillosis is the leading fungal killer among immunocompromised individuals. It is an invasive infection that attacks the lungs, can disseminate to other organs, such as the brain, and can lead to kidney and liver failure. The disease currently has very high mortality as the current available therapy has a high failure rate.

The research team used a simple yeast preparation as a vaccine against Aspergillus in mice. They found that unmodified yeast gave just as much protection against the development of aspergillosis as yeasts that had been engineered to display Aspergillus surface proteins. Dr. David A. Stevens, from Santa Clara Valley Medical Center, in whose laboratory the studies were performed, said, "Our results suggest that the protective component of the yeast is in the cell wall. What's more, the simple preparation we used has been shown by us to also protect against infection due to three other fungi that cause human disease – Candida, Cryptococcus and Coccidioides."

Baker's yeast is being studied by other groups in human clinical trials for other purposes and appears to be safe. "Research to date, including our study, supports the development of a yeast vaccine against all pathogenic fungi that infect humans. Such a 'panfungal' vaccine would further reduce mortality in immunocompromised individuals," explained Dr. Stevens. "While vaccinating all individuals with impaired immune systems would be a formidable challenge, there are certain patient groups that might be the initial target of a vaccine effort. These include transplant candidates, leukemics following induction therapy and also patients diagnosed with solid tumours."


Who knows, this could be the start of something really great.

Sunday, August 7, 2011


Guy: "You're absolutely glowing."
Moi: "It's 117 degrees out..."
Guy: "But you seem to be enjoying it."
Moi: "I am. Very much."
Guy: "This kind of heat kills most people. But you, you seem so alive."
Moi: "That's precisely why I'm here."

Saturday, August 6, 2011

Take a Chance, Write Your Own Life

It's always amazing to me how certain things pop up in our lives just at the moment they're needed/relevant.

Enter 14 year old Emily Qvistgaard. This amazing girl has end stage renal disease and is waiting for a transplant. Recently my friend Dave Tweedie was able to help make her Make-A- Wish come true: recording one of her own songs.

You can download this song free on iTunes :)

Her insight and happy disposition are inspiring. I cried like a baby watching that video. I think we can all take a page from her book.

The parts that got to me the most are:

"Love life. Love the way you live it
Don't try, just keep on breathing
Wishing on a shooting star"

"If I could get away
I'd run away
and stay away
I'd walk right out that door"

Knowing what having a chronic illness is like, I say "Amen" to that

"When I get a chance, you know I'll take a chance"

"You are the writer of your life and
You choose how you want the ending

Decide how you want to tell it
Shine on, there's nothing to it
Release all your weighted regrets
Just let nothing get your hopes down"

I really identified with this song and couldn't have heard it at a better time.

In this article it states "through diet, and a daily dose of several medicines, Qvistgaard was able to stabilize her condition.
She religiously watched the amount of protein and salt she ate. Today, she even gives herself daily injections and lives with less than one-quarter kidney function."

Wow. Different illnesses, but strikingly similar circumstances. If I start to feel sorry for myself about my situation I'll remember Emily, who at ten years old, faced what I didn't have to deal with until age twenty-four. I had more than twice the life she did before getting sick. This girl is incredible and inspiring. I wish I could give her one of my kidneys.

So in regard to kidneys and taking chances, I have some updates:

-My kidneys are functioning at 60% so I will be cutting back on the hemeoperfusion(blood filtering)again and seeing how my renal function fairs. We've slowly been tapering it down this year, from every two weeks, to recently, every 4 weeks. Now it will be every 8 weeks. Hallelujah!

-I will be weaning off the steroids over the next 6 weeks. I'm going to apologize in advance for the Hulk behavior that is likely to arise from this.

-After I've weaned from the steroids I will be taking part in a clinical trial and will be taking a new experimental oral drug. I'm taking a chance. It's my life and I'm choosing how to write it. (Thanks Emily)

The trial is 6 months long (from Sept-Mar), so it will bring me to the 2 year mark of getting sick and to my 27th birthday. Two pretty significant milestones, I must say.

During that time I will be monitored very closely, all my specialized medical care and prescriptions will be covered (this is a HUGE weight off my shoulders), AND they will be paying off most of the enormous debt I've already accrued. I really see this as an opportunity to get my life back and I'm willing to take the risks to have that.

Please, any positive energy (prayers, thoughts, mojo, etc) you can put toward things going well would really help. Put some out there for Emily, too. We need someone like her around.

Friday, August 5, 2011

To post, or not to post...

That is the question.

There's about to be a whole slew of TMI. (You've been warned.)

I have yet to have dates, but I did make a raw pie-like thing by mixing butter and almond meal for a crust, then putting Greek yogurt and plum on top.

The only thing is I don't think my system was ready for the butter and I vomited all over the gearshift in my car. And I thought that time I puked all over the steering column while on the highway was bad!

Luckily, I'd just eaten a bunch of beans so it was pretty solid and easy to clean. Plus, last month I accidentally dumped a bunch of crumbs all over the gearshift that I never fully cleaned, so it prompted me to do so. Now my gearshift is as clean as my butthole!

I took a pic because I thought it was hilarious, but I'll spare you that, here. If you're into gross stuff, I've got quite the collection of pics now. Let's talk.

Wednesday, August 3, 2011

Decisions & incisions

Yesterday I had my one week jaw post-op check up. They took the external gum stitches out to examine the wound/bone and see how it was healing.

I made them take a pic before they restitched it.

If you're squeemish I'll pretend to be sorry for showing you this...

(It's hard to see, but the incision is about an inch long) Pretty, eh?

Things look good, so they put in dissolvable sutures, and gave me the go-ahead on straws and chewing on that side. I go back in 3 weeks...

*A week ago I met with the infectious disease doctor and went over, in detail, the results of all my tests (including my kidneys- which I will update on soon). We talked about possible options for my course of treatment, medicine, possible clinical trials, etc.

I've elected not to discuss any of that information with anyone because I wanted the decision to be MINE, solely, without any commentary or persuasion.

I've pretty much made my decision, and once the ball has been rolled, I'll outline what it entails.

Saturday, July 30, 2011

I'm not sorry I can't eat that

Text from my friend: "Snickers and captain crunch. Snickers awesome, captain crunch mushy. They added marshmallow, so it didn't slow us down much." 

Wednesday, July 27, 2011

And the results are in...

So I met with my team of doctors today to go over all the results from last week and discuss options. I used to attend summit meetings/grand rounds like these for my patients, so it's always interesting to be on the other side now. Humble much?

To make things fun and to get an idea of my standing (and because I'm an overachieving teacher's pet) I made them give me grades on a letter scale.

Here are my scores...

-Candida level is less than 25% and should hopefully be eliminated in the next 6 months!
-Aspergillosis is 65%, down from 80% in December. Hey, I'll take it :)
-My average plasma glucose concentration over prolonged periods of time is staying stable
-The immunoglobulin levels have decreased (auto-immune response is lessening)
RAST scores:
-Dates got a 1 on the RAST (low level reaction) --> can eat on occasion!
-Agave got a 2 " (moderate) --> still can't eat, but it used to be a 3.5, so maybe soon...
-Butter got a 0 " (no reaction) --> I can eat small amounts!
-I didn't pay attention to the others bc they were all firm NOs...

Way to go blood!

***Side Note: I have been wanting to eat butter and dates for months, so I could eat some of the health nut desserts I've seen around and bake some sugar-free, gluten-free recipes, so I am SUPER excited about this!***

-Colonoscopy/ultrasound looked really good with only a few spots of old growth remaining
-No new growth detected
-GI tract is healing
-Gut Flora is replenishing

Great job GI!

-Xray/Fluoroscope looked great
-MRI showed no new growth; old growth shrinking
-No more growth or swelling in brain!
-Electrical responses properly being sent from brain
-No more growth in eye orbits (I would like to express a YAY! for not bleeding from my eyeballs anymore!)
-Cerberospinal fluid (brain juice) clear of infection

Way to rock it, Neuro!

*Big fat F
-My "compound muscle action potential" is very low. I don't really know what that means, but it's not good...
-Messages sent from brain are getting lost or altered before getting to foot
-Primary muscles are losing function from lack of mobility
-Secondary muscles are taking up slack and altering gait and skeletal structure (overcompensating)
-Site of nerve damage unknown

I'm really disappointed in you, PT :(

-Bone density is great (Years of drinking milk by the gallon pays off!)
-Toe joint protrusion/hammer toe is getting worse with nerve problems
-Surgery to restructure toes is inevitable

You may have failed, but the important thing is that you tried

-The ole Ticker is doing awesomely!
-Doing a fine job of pumping
-No signs of fungus at all
-Staying in normal ranges and not overworking itself

Cardio, you're a rockstar!

-Lungs still pretty necrosed, but healing
-No purulent sputum present!
-No fluid!
-Fungal balls are not recolonizing; a few sections were able to be removed :)
-No bleeding
-Nasal passages still inflamed but not infected; muscosa has thinned
-spirometry volume and velocity is improving, with my peak expiratory flow is at 300, up from 200 in December (average for my age/height is 430)

Lungs, you win for most improved!

RENAL *Grade incomplete (waiting for results)
-Looked good on MRI, scans and xrays
-No signs of fungal growth
-Pee tests show healthy filtering
...waiting on blood results

Overall, I scored a C+! Barely passing, but passing nonetheless."It doesn't matter if you win by an inch or a mile; winning's winning."

Things are looking pretty good aside from my stupid foot.

As far as my jaw pain goes: I wasn't supposed to have any prescription pain meds after 5pm yesterday, or any ibuprofen or aspirin after midnight last night, before the bloodwork today, which made last night one hell of a party. This morning I felt like a trainwreck, but by the time I was done at the doctor and could have taken something, the pain had dulled to an ache. Thank you!

Today was a really good day and to top it off I get to go to Vegas in a couple weeks, by means of some divinely calculated events. My Dad texted me this morning saying he'd be in Vegas for 5 days on business. I was able to go last summer (read about it here, here, and here) and it was really good medicine. The catch is that he's there during the week and, unlike last time, I have a job. Then, my boss informed me at dinner that she's taking that week off work to spend time with the girls! (Which is better for them, since they've been rotting their brains lying in bed watching movies with me all week) *Cue phone call to Dad* Thus, just a mere 8 hours after my Dad suggested I come stay with him, I was booked for 5 days in Sin City. It's gonna be so hot. I can hardly wait :)

*I meet with the infectious disease doctor tomorrow to talk about the results and make a decision about course of treatment, medicine, possible clinical trials, etc.



"How long the night seems to one kept awake by pain." -Bernard Joseph Saurin

Last night was rough, like a wrecking ball to the face. My last pain pill was yesterday around 4 and by 11 pm I thought a cannon was going off in my jaw. I took some Ibuprofen but that just made my gums bleed and my jaw throb.

Thank you to my newest addiction to All My Children's Marissa/Bianca(Minx) storyline for pulling me through.

I have watched every clip of these two from December to now in the past couple weeks and last night I spent several hours watching fan vids. What did we do before YouTube?! Nothing like a cute couple to take your mind off your pain.

This morning I feel like a train ran through my face, but I'm not bleeding or puking, so I'm going to consider my position to be favorable to yesterday. Gratitude, Dude!

Now I'm off to find out test results from last week and have blood drawn...

Tuesday, July 26, 2011

From Vom Fest to Nom Fest

I'd say the pendulum swung from suck to smile by day's end

Jaw breaker update

Back in April I had a dental disaster that has resulted in a dozen trips to the dentist and oral surgeon for: a bone biopsy; two root canals; three crowns; lengthening of an existing crown; five fillings; three deep cleanings; and the latest and greatest, a gum flap removal and abscessed bone extraction (the mold caused the abscess to grow & eat away part of my jawbone).

I find joy in knowing I'm putting my dental teams' children through college.

All the dental hulabaloo happened right before I was originally supposed to have all the medical tests I had last week and has been a damper on that moving forward the past few months. Finally, my mouth was healed enough that we could moved forward with the tests, before diving back into the oral ordeal, which is what I had the pleasure of doing today.

I still have at least two more appointments and then, FINALLY, I will be fitted for my new mouthguard and done with this entire ordeal.

Yesterday was the gum/bone extraction to rid the decayed section caused by my jaw being infected.

(You can right click, "open in a new tab" to read it)

So I was originally told that they would only be taking out a small section of gum, and possibly part of a tooth (I should know by now nothing's ever easy) but they ended up taking more gum than expected once they got in there. They also decided to take out a piece of bone between/around the two affected teeth, too. Which I was thrilled about, of course.

Fun times

This is my mouth after, with cement over the affected area to keep the stitches in place and the wound clean (this later proved to be a false security).

I made it through all the tests last week without pain meds, but when they're sawing a chunk of your jaw out, you bet your gold fillings, your hand's out when they offer drugs. I swam through the rest of yesterday in utter bliss.

Then today my mouth kept bleeding and bleeding and bleeding so I had to go back in. Apparently I'd ground the cement in my sleep in a way that it had popped a stitch. (No surprise there) They put in a few more stitches and more cement, gave me another pain pill and sent me on my merry way.

Only this time, when I got home I didn't immediately get in bed and stay there for 16 hours like yesterday (big mistake), but instead decided to eat some cantaloupe (big mistake #2) and stand around for no good reason (mistake trifecta). This boded well for me when I projectile vomited all over the white rug.

I was supposed to have more bloodwork done today but obviously if you're bleeding and barfing it can't happen, so it might happen tomorrow.

"To a person with a toothache, even if the world is tottering, there is nothing more important than a visit to a dentist."
-George Bernard Shaw

I have my summit meeting with the whole medical team tomorrow to go over all of last week's results!
*Fingers crossed*

Sunday, July 24, 2011

Saturday, July 23, 2011

This update is brought to you by my left lung

My lungs, though wounded, have chosen to deny The Dark Side and step into the light.

My left lung, the smaller, weakling, runt of a respirator is really pulling his weight lately. It's about time, dude!

The fungal balls do not appear to have any new growth and they were able to nab a few, (can you believe that they wouldn't let me keep them?!) and the scar tissue looks to be healing. The biopsy results are still pending, but my pulmonologist seems hopeful.

Monday I go in for what I really hope it my last dental procedure.

Tuesday I'll have more blood drawn for 57 (facetious overestimation ) more tests.

Wednesday is a summit meeting with my medical team to go over this weeks findings.

Thursday meet with infectious disease doctor to discuss possible clinical trial.

Friday sleep. Lots and lot of sleep.

Thursday, July 21, 2011

Update THIS

Today was rough. Really, really rough.

For starters it was the anniversary of the death of a very dear friend. 3 years later and I still haven't completely let myself feel the entire weight of it: the sadness, the tremendous feeling of loss, the anger, the guilt. Today those feelings finally broke free and I was able to truly grieve entirely and fully; and in doing so process and begin to make movement towards acceptance.

Along with those feelings came a flood of other moments of loss from this past couple of years- and wow, once that floodgate was opened the losses rolled in like a river. If I hadn't taken a moment to pay gratitude to what I've gained, it surely would've swept me away.

The stress test went alright. The bike was pretty hard to do with my damn foot, and I got really frustrated, but I didn't pass out or cough up a lung (which makes me hopeful for the bronc tomorrow). I did what they wanted me to do and I'm pretty sure the results are good.

The EMG & Nerve Conduction studies were a total bust, though. They basically electrocuted the bejesus out of me for over an hour. No seriously they sent electrical waves through my body. I'll take 50 colonics over having to do this again!

So basically, the nerves in my foot failed the test horribly. When they manually send an electrical current to my muscles they reflexively function, but if I try to manipulate them myself they don't. My brain is sending the message, but my foot isn't getting the message. It's like someone took the phone off the wall.

They think there is a weakspot along the line, probably some nerve endings that got irritated by swelling from the fungi overgrowth (most likely problem areas from old injuries). Hopefully with time and therapy they'll recover. *Fingers crossed*

Also, the steroids have weakened my muscles significantly, moreso than expected. Gee, thanks

Furthermore, my Extensor hallucis longus tendon (top of foot) is overstretched; my flexor hallucis longus tendon (big toe) is tight; my posterior tibialis tendon(arch) is shortened; and my flexor digitorum longus tendon (bottom of foot) is tight. In layman's terms: stuff's f-ed

This makes sense, considering my foot looks like this:

But, I didn't realize the extent of damage that the muscle weakness was doing to my tendons.

It was a deflating appointment after everything else this week looked so promising.

My loss of mobility has been really hard on me (Almost as hard as losing pie) and coupled with really missing my friend, it was an ugly-sob-in-the-middle-of-the-clinic-making-everyone-extremely-uncomfortable kind of day.

I'm glad my heart & colon have forgiven me, at least, since my foot so obviously hates me. My blood is still Switzerland. Tomorrow my lungs will choose sides...

Wednesday, July 20, 2011

TMI: The Barium Experience

It's about to get real intimate.

Now, I've already posted pictures of the inside of my butthole, so really I feel we're pretty close, you and I...

I'm about to give you insider information that hasn't yet made it to the streets (As far as I've ever heard anyway).

If you ever have the opportunity to have a colonoscopy, you will know that you have to clean your pipes beforehand. For me, this meant being on a liquid diet of veggie broth for 2 days prior to the procedure, and a few rounds of laxatives... I'll let you fill in the rest.

The day of, the doctors are kind enough to give you a thorough cleanse via an industrial strength enema...How people enjoy douches or bidets is beyond me.

You also need to let your colon forgive you the day after, which, again, for me, meant veggie broth.

Today I had my first real meal since Friday, so as things go, tonight I had to, to put it politely, make.

By golly, my colon is so pristine and heavenly that my poop was an ethereal WHITE!

There, now you're privy to insider info. Do with it what you will.

My week, some more...

- Nasal probe (My chronic fungal Sinusitis is finally clearing out)
- MRI (They played show-tunes while I was in the tube (I'm on a show-tunes kick this week) which was awesome!) My new fillings were pretty angry about this procedure, but other than that it was another positive day.

Things are looking really good so far!

- Stress Test
- Electromyography
- Nerve conduction study

-Broncoscopy to test Bronchiectasis
-Possibly a Mediastinoscopy

- If steroids made any changes to nerve regeneration/foot muscle strength
- If/when I will have foot surgery
- Heart function
- Presence and locations of fungi

*Waiting on bloodwork results from:
-Glycated Hemoglobin
-Immunoglobulin E (IgE)

Tuesday, July 19, 2011

My week so far...

-Colonoscopy to check how my Gut Flora is regenerating and look for the pressence of Candida and Aspergellius.

Last year


There is still a bit of growth (white patch near back of left pic & left forefront of right pic) & some raw spots (yellow areas)...but wow, I've got a good looking poop chute, if I do say so myself!

- Barium enema

What a good-looking gi tract!

- Abdominal ultrasound


- Barium swallow
- Chest X-rays

Things look so much better compared to 7 months ago

- Chest & GI Fluoroscopy
. (Things looked really clear and no Bronchospasms were detected)
- Dual-energy X-ray absorptiometry (to see if prolonged steroid use is affecting my bone density)
- Full blood work-up

-If the steroid has aided in healing my GI tract and lungs, as hoped
-If I will need to continue intramuscular Steroids (Methylprednisolone); move to oral steroids; or stop them all-together
-If the sterioids/antifungals are causing severe side effects to my body
-If I will switch from IV Voriconazole to oral...with the possibility of trying out Posaconazole (if we decide no more steroids)

-Having a colonoscopy without sedation isn't so bad, but makes me appreciate the fact that I'm not a gay man, or a straight girl with an adventurous boyfriend
-Singing show-tunes with your x-ray tech is really the way to go and I highly recommend everyone try it
-Watching soaps with your phlebotomist makes getting stuck totally worth it (Minx storyline on AMC, anyone?!)

So far, this has actually been a pleasant experience and even allowed me some time to hang at the beach!

Wednesday, July 13, 2011

Help find a cure for Aspergillosis with a simple click

An organization in Vermont is giving $10,000 to non-profits and we're hoping to get some of it to fund Aspergillus research.

Please click on this link and then click like. Then choose "other" and type in "Aspergillus Association of America."

We could really use the support. As a little known illness with a very small organization we need all the support we can get to help find a cure.

Wednesday, June 22, 2011

Brace Yourself

This is my lovely new brace.

Decorated and in action!

With my 3 legged horse friend

Tuesday, June 21, 2011

Master at work

I felt like cooking the other night, but seeing that I live in someone's basement, and given how the house above is owned by a chef, who happened to be honing his craft, I had to resort to ulterior means.

I haven't cooked in so long, I felt I had to jump on it as soon as the idea struck me. Otherwise, knowing myself, if I had waited for the kitchen to be freed, the moment would long have passed.

Thus, I came up with this:

I just pretended I lived in NYC and cooked a delicious meal of verde chicken.

Verde Salsa Recipe:

1 yellow heirloom tomato
3 red vine-ripened tomatoes
2 medium sized avocados
3 jalepenos
1 yellow onion
1 clove garlic
half a lime
half cup of water
Salt if you prefer (I don't)

Chop the vegetables.
Combine the water and yellow tomato in the blender.
Then slowly add other ingredients in small increments, and blending each one in (I suggest starting with softer veggies so they blend better and don't grind the motor. Hence why I started with the big tomato).
Squeeze in the lime.
Add salt, if you wish, to taste.

I have a feeling I'll be doing some more cooking very soon...possibly even in a real kitchen.

Thursday, June 2, 2011

I can't eat that: East Coast Edition

No ice cream cake. No Ninja Turtle pop with bubble gum eyes. No Philly cheesesteak and cheesefries. No Polish meatballs or lasagna. No pretzels, hot dogs, sno-cones, pizza, or funnel cakes from street vendors. No birthday cake...

Buuuut, I did make my own version of a hoagie from the veggie tray

and a chicken breast

Improvision at it's finest, Folks!

I also made Buddha Bowls with my friend Katie (This is her blog: Wellness Uncorked)

This is her recipe:
"One Pot Buddha Bowls
1 cup quinoa, cous cous or brown rice
Veggies of your choice, chopped into bite size pieces (I like to use onions, broccoli, yellow or red peppers, tomatoes, and alfalfa or mung bean sprouts)
1/2 avocado, sliced into cubes
Salt and pepper to taste (or you can get fancy, and add a touch of salad dressing for a more interesting taste)

1. Boil 2 cups of water. Add grain and reduce to warm. For quinoa, cook for 15 minutes. Cous cous only needs 5. Brown rice needs about 50 minutes.
2. When time is up (but not before), remove lid and fluff grain with fork.
2b. If you cooked a double serving of grains, remove half and let cool before packing up in Tupperware for a future meal.
3. Add chopped veggies to pot, stir, and re-cover. Let steam for 5 minutes.
4. Serve with avocado and salt and pepper or a balsamic dressing (for my favorite balsamic dressing, check out the recipe section of my website!)"

When I first met Katie a few years ago, she was a vegetarian and ate a lot of raw food. (I thought she was nuts) Now I'm reading her blog and going to her for information on healthy eating. Funny how things come full circle...

I ate pretty well on this trip considering last summer's food debacle when I went to Vegas with my Dad and ended up eating raw, dry oatmeal and ordering 500 dollar room service salads.

Monday, May 23, 2011

I won't be eating that

Headed to The East Coast for a week and will not be eating:

Soft pretzels

Wurder ice (That's Philly-talk for Water Ice, or Italian Ice)

or a Philly Cheesesteak