2015

Some numbers...

30: That's how old I'm turning this year.
4.5: That's how many years since my diagnosis.
21,000: That's how many times this blog has been read (if you include the hits to the original page)
Zero: That's how many times I visited the hospital last year.
Zero: That's how much Aspergillosis is in my blood, marrow, or spinal fluid.
A trillion: That's what I'm one in.
Twenty Fifteen: Never thought I'd see it.

Never imagined I'd be rounding the corner on Thirty. Never, in a million years. And here I am. Against all odds.

And I'm healthy. Last year I had a few colds, stomach bugs, headaches, and ear infections, but nothing to write home about. I don't think I've been that healthy since I was probably 15.

And I'm happy. In the last year, I've been emotionally, mentally, spiritually more happy than I've ever been. And I'm doing things that make me happy and trying to surround myself with people that make me happy. And trying really hard to be a source of happiness for others.

And I'm healing. I can jump and jog and breathe. I don't physically hurt as much, anymore. And I'm letting go of anything that tied me down, whether it's people, or situations, or the past.

I'm free. For the first time ever, I'm actually free.

2015, I've got your number. It's going to be a great year!

Ch, ch, ch, chaaanges

Rewind to about two years ago:
"Here have some of this (insert food item here)."
"I'm not allowed to eat that."
"Why?"

And so, this blog began...

We're rounding the corner on two year of blogging. Whooo, party! Given how much has changed during that time, and as a sort of celebration, I'm changing things up a bit around here.

First of all, this blog started out as a way to cope with my diet. It was meant to fend off being asked the same questions repeatedly; to cope with my new way of eating; to experiment with new foods; and to provide some levity to a very serious situation.

Then, it also became a place for updating people on my health. Again, it was a source of answering the barrage of questions in one place; a way to cope; to talk about experimental treatments; and for some escapism from the difficulties I faced.

Along the way if became a place of refuge; of hope; and of connecting with people who know me, or know similar situations, or who simply found a common bond.

I have used this space to rant, ask for help, rejoice, and laugh. I've grown and changed along the way, and now it's time for the blog to morph a little, too.


What's changing:

The name "Food Withdrawl"- While I'm always going to be experimenting with, and seeking out new foods and recipes, I'm not in withdrawal anymore. Also, not ONE person ever got the pun in the name, or even noticed that it was either a play on words or misspelled- which has bugged the crud out of me!

In his autobiography, pacifist and philosopher, Bertrand Russell stated, "This has been my life. I have found it worth living."

I chose to rename this blog after that quote. Despite everything that has happened thus far, and all the horrible things that I have been through: the pain, and surgeries, and organ failure, and struggle; the goodness, hope, love, and beauty I have experienced have far outweighed it. This has been my life. It wasn't what I would have chosen, but it has gotten me to where I am, and it has made me who I am. And I think it's been worth it.

The layout- I got tired of those vegetables. Really, can you blame me? If I never see another vegetable for as long as I live...

What's staying the same:

The recipes (hopefully I will post more of them), the pictures of what I'm eating, the updates on my health (hopefully less of them- no news is good news, yeah?), the quips and sarcasm, the refuge, the connections, the hope ("You gotta give em hope!" -Harvey Milk)...


So here's to another leg of this journey that started with a single step back in June 2010. Since that time, as of right now, this blog has been viewed 8,818 times. While a seemingly small number in the grand scheme of things, and blogs, I'm very thankful that people have cared enough about what I'm writing (other than my Mama, who probably accounts for about 1,000 of those views) to visit this page so many times. I really love when you comment, too- it makes my day, every single time. Thanks for being a part of the journey. It's been more than worth it.

Marching right along: 2 years later...

It's March, already? How did that happen?!

This weekend marks two whole years since that fateful skiing incident that kicked off this whole show. I'm reminiscing about the whole mess of stuff that has happened since then that brought me to where I am today. Sometimes, it feels like no time at all. Two years isn't really that long, in the grand scheme of everything. Other times, it feels like for-ev-er. Wendy Peppercorn, where you at?! Has is really only been two years? Because it feels like fifty. I think I've lived more in these past two years, than in the previous twenty four combined.

Let's take a trip down memory lane, shall we?


Here's my lift ticket from that day.


Ordinarily, first-timers aren't allowed on the lifts. However, after impressing my instructor with my hubris and mad skiing skills; and having mastered, in a few hours, all the goals of the day lesson, they bumped be up to the next lesson level. By lunch, I'd mastered all the goals of the second tier, as well. It was decided that I was a natural and got approval to ride the lift. This is when karma came in and put me in my place.


If you know me, or have read my posts, you already know I'm a stubborn asshole, who loves a challenge. You also know that I throw myself headfirst into pretty much everything I do. You also probably know that throwing yourself headfirst into skiing, might not end well.

You're also probably thinking that's what I did and that this is a classic case of flying too close to the sun.

I wish I could say that. I wish I could say I tackled that mountain with such fury that I went out in a blaze of glory and smashed my face in the process. Instead, I leaned too far getting off the lift and face planted, my skis locked behind me, and I rode down the hill on my face. I was relegated back to the bunny slope after that.

Here's my raw nose before it scabbed over.


It doesn't look that bad right? It's like a sunburn, or a skinned knee, just on my face, right? That's what I thought, at the time. It didn't seem like that big of a deal.

I wish the story was more glamorous or colorful, but this isn't Hollywood, nor am I the one writing the story. I'm just turning the pages.

This weekend, ironically, the family I live with is going skiing. There's a part of me that wants to go, to show skiing who's boss. Instead, I'll be at home, in my warm bed, thankful that my nose isn't raw like this anymore.

I'm keeping my wings from melting, this time.

One Small Year, A Trillion Large Thanks

A year ago I went skiing for the first time...and it nearly killed me.

It's been a hell of a year and I couldn't have done it without the love and support of those around me.

Thank you to everyone who helped me survive this year.

Thank you for your calls, texts, emails, postcards and comments.

Thank you for driving me around town, for coming with me to appointments, for sitting with me in the ER when I was coughing up blood, and for bringing me food when I couldn't get out of bed.

Thank you for donating items to my garage sale and for helping me run it.

Thank you for holding my hand when I was scared or so I wouldn't fall, and thank you for helping me get up and down stairs.

Thank you for walking slowly so I could keep up and laughing with me when I fell flat on my face.

Thank you for encouraging me and supporting me when I was losing hope.

Thank you for buying me groceries, for making diet-friendly meals at gatherings, and for eating at diet-friendly restaurants.

Thank you for slipping me cash, writing me checks, and loaning me money.

Thank you for helping me move out of my old place and thank you for helping me move into the new place.

Thank you for buying my old bed and thank you for giving me my new one.

Thank you for letting me stay on your couches and air mattresses, and in your guestrooms and beds.

Thank you for admiring my scraper cane and pirate brace, for asking what was wrong when I looked like shit, and for telling me I looked good when I started feeling better.

Thank you for laying in bed watching movies with me, and for reading me bedtime stories.

Thank you for providing me with puzzles, books, and movies to occupy my time.

Thank you for offering job and housing leads, and for suggesting recipes and food I should try.

Thank you for your prayers and well wishes.

Thank you for making me laugh and for holding me when I cried.

Thank you for being the best medicine.

Thank you, thank you, thank you times a trillion!



"One small year
It's been an eternity
It's taken all of me to get here..."
-Shawn Colvin

FAQ

For those who want to know and for those that have asked and received the JA or SA responses...

Key:
JA =Jackhole Answer
SA =Succinct Answer
IA =In-depth Answer

Q1: What's with the cane?
JA: What's with your face?
SA: I have a hurt foot.
IA: I have nerve damage in my foot and it helps me walk properly so I don't either: a) limp profusely b) walk on my foot incorrectly (usually on the outside or tiptoe) or c) fall on my face. That sometimes happens anyway...

Q2: Why do you wear a brace?
JA: I stepped on a land mine in Viet-Namn.
SA: I have nerve damage in my foot.
IA: I was in a car wreck 4 years ago and took the impact with my right foot, which traveled up my back, injuring the nerves in my L4, L5, S1 and S2. I've had problems with my back and foot ever since and am prone to hurting them. They've progressively gotten worse and I've known for a while I would probably need surgery, but I didn't have insurance for the past 3.5 years. Then, the Aspergillosis caused an auto-immune response in my body and thus attacked the weak spots, causing weakness and pain in my foot. (The high amounts of glucose and side effects from some of the medications I'm on also contributed) This makes it hard for me to lift and flex my foot and also causes my foot to drop down or curl under. The brace keeps it flat, stabilizes it, and provides a platform under it, so when I lift my leg my foot comes with it, rather than flopping downward.

Q3: So, what's the name of your disease? What is it, exactly?
JA: Aspergillosis. Black mold.
SA: Aspergillosis. It's a black mold that is in my entire body.
IA: Aspergillosis (click the link for the full answer)

Q4: How did you get it?
JA: I won the lottery.
SA: Through a series of unfortunate events jump-started by frostbite.
IA: A journey of a thousand miles begins with a single step

Q5: How rare is it?
JA: One in a trillion.
SA: Very.
IA: There are less than 5,000 known cases in the world.

Q6: What can't you eat?
JA: Everything except watercress and water.
SA: It'd be easier to tell you what I CAN.
IA: Can I eat that?

Q7: When will you be allowed to eat normally, again?
JA: Probably never.
SA: I'm just taking it one day at a time.
IA: There's really no way of knowing, at this point, but I'll hopefully be able to add some foods back in eventually; but I'll likely always have to be conscious of what I'm eating.

Q8: You're probably used to it, by now, right?
JA: Not really.
SA: I'm getting a little better about it.
IA: I'm discovering new things I can eat and new ways of preparing food but I'm still adjusting and sometimes it's really hard.

Q9: Are you contagious?
JA: Yes, stay back.
SA: No.
IA: Not unless you have no immune system and I give you an organ.

Q10: Why can't you eat (insert any forbidden food)?
JA: I'm on a cleanse/Atkins/South Beach diet.
SA: It feeds the mold or makes me sick.
IA: Because it (probably): harbors mold, is high in glucose/sucrose/fructose/ lactose/carbs/stearic acid or is difficult to digest.
Q10b: What do you mean, you don't know? Don't you ask?
JA: I'm not a doctor, I don't know all the specifics.
SA: I just don't eat it if they tell me not to.
IA: It's a lot of information to take in and a lot of it is overwhelming or scary, so I elect not to ask and choose to be on a need to know basis. (I'm starting to ask more questions now, namely because I'm tired of other people being frustrated with me when I don't have answers to offer. You're welcome.)

Feel free to ask any further questions in the comments and I will submit them to the management for answers.

"A journey of a thousand miles begins with a single step."

In February, I went skiing for the first time and rode down the bunny slope on my face(I'll tell you that story another time), enduring second degree ice-burn on my nose.



Then, got a bacterial infection in the wound and was given antibiotics.



However, as a result of having been prescribed too many antibiotics over the years, they weren't working. In the meantime, my nose kept getting sunburned and progressively more infected.



I was prescribed a very heavy dose of antibiotics and it started clearing up(or I thought it was).

Then, I contracted Chronic Mucocutaneous Candidiasis in my nose wound and on my hands and feet.





Apparently those heavy antibiotics were wiping out my immune system and all the probiotics in my intestines. Let's also mention here that I have IBS. As a result of that, and having basically no probiotics in my intestines, the Candidiasis spread to my GI tract where it turned into Candida Albicans. (You still following this?)

Then (yup, there’s more), apparently I have leak-gut due to my weakened immune system and IBS, so the infection spread to my blood, becoming a Systemic Candidiasis. Once the infection was in my blood is spread rapidly to all my organs. This includes EVERY cell of my body: skin, eyes, lungs, heart, brain, liver, kidneys, etc., etc. (Wait, there’s more) THEN, I got Aspergillus fumigatus.

By that point, in early May, I was horribly sick, but they couldn’t figure out what was going on and since I don’t have insurance I was reluctant to let them perform all the tests they wanted to…then, things got pretty scary and ugly(I’ll spare the gross details here, but feel free to ask me).

I had no choice but to agree to the tests and by the end of May they finally figured out what I have, much to the doctors’ surprise. Apparently only people with HIV, HPV or cancer and premature infants contract Aspergillosis (none of which apply to me).

(Wait, there’s more) On top of having Aspergillosis, it turns out I am also Hypoglycemic (yay, go me!) The problem with having both these conditions is that Aspergillosis feeds on sugar, so, in order to kill the fungus, I have to eliminate sugar from my body, however, due to my Hypoglycemia, my body NEEDS the sugar (cue the violins).

Apparently the chance of all these factors aligning for me to be in the position I’m in is one in a trillion, thus confirming just how special I truly am.

So, in addition to all my medications, being overwhelmingly exhausted, and in quite a bit of physical pain, I am now on a very regimented, restricted and monitored diet which excludes gluten, dairy, sugar(except for one serving of fruit if my blood sugar is low), anything processed, most things cooked, most carbs(I can have up to 50g a day-but only 15g at a time- 50g is equivelant to a tortilla, in case you were wondering) and basically everything that I normally eat.

Honestly, changing my diet has been the hardest part of this entire process, and I'm barely a month into it. I’m starting this blog to document my journey through this whole new way of eating. So I’m raising a glass of herbal tea(I hate tea, btw) to this new endeavor. Cheers.