Tag Archives: Chronic Illness

Happy 2015!

  HAPPY NEW YEAR!!!

 Greetings, friends! Happy 2015 to all of you.

Alright, I’m going to start off this new year with some honesty. For the past few years, I’ve really dreaded New Year’s Eve. Why? Because for me, it’s always been a time of reflection. And as hard as I’d try to stay positive, one thing would smack me in the face like a cold, smelly fish: Another year gone by, and I’m still not healthy. Another year gone by, and the most memorable thing about me is still that I’m the girl who can’t kick Lyme. For years, there was nothing that could combat this, nothing I could hold up and say, well, at least I have this!!! Until NOW. (Dun dun dun…..)

As of yesterday, the last day of 2014, I wrapped the final draft of my very first novel– a YA fantasy novel called Elements. It clocked in at over 120,000 words, and is the first in a series. I’m thinking trilogy, but I may go all George Lucas and do a triple trilogy… who knows!

So last night, as I sat with Mandalf on our couch, discussing our goals for the new year and playing fetch with our cat, Yoda– (he finally learned how to fetch and return his toy right to our laps, and now he wants to play ALL. THE. TIME. But seriously. When a gorgeous silver striped cat looks up at you expectantly and gives his little musical mewl, how can you say no? I can’t. Which is why I pull my deltoid muscle at least once a day. But I digress.) Anyway, I realized that even though 2014 was by far the worst year of my life, and I spent pretty much every moment of it holed up in my house due to how sick I’ve been, I now have something I can hold up and say ah-HAH! Finally, something that is not overshadowed by my chronic illness! What is it, you say? Well, folks, I’m a writer. Ooh. Spine tingle. There’s something so powerful about saying that. I am a writer. Publishing world, here I come!

The point is, this was the worst year ever. And yet, somehow, I wrote a book. A book I am so monumentally proud of. A book I think is damn good. And it just goes to show, even when the chips are down and you think you’re never going to get back up again… unexpected blessings do happen. I am living proof.

So Happy New Year to all of you, and may you find your own unexpected blessings this year.

Cheers,

The Foda

“The Iron Wind”

“The Iron Wind”

I looked out on the frosted moor

My mind did wander, took a tour

It sent me back to days gone by

When dream I did, and need but try

Yet youth was wasted ‘fore my time

My course was jackknifed on a dime

And now I must ply dreams with fate

My choice accommodate or wait

My shell won’t go my throat won’t sing

I know not what each day may bring

Yet as I traversed through these woes

A steely iron wind doth blow

It blanketed the earth below

And shoved me where I dare not go

Into the icy wilderness

Where sharpened blades my feet do kiss

I stand in place, my breath is smoke

I’m all alone, my spirit broke

And yet the iron wind does blow

And shows me where I dare not go

Where every step the ice impales

And every breath drags in like nails

But still I stand and pray to grow

My arms outstretched, my cheeks a-glow

And through a cloud a ray of sun

Spotlights my life and tells me run

Run even if your legs cannot

Dance in your heart and with each thought

For one day you’ll be here again

Your body matching what’s within

You’ll look out on the frosted moor

And thank God for what came before

This time is rare, the journey long

But it will serve to make you strong

And then the light it did retreat

Yet in my soul was born a heat

To live where iron winds doth blow

To go where others dare not go

And so I walked in stocking feet

And thanked the icy blades as sweet

For courage coined must come through fear

And roses grow where thorns appear

10 Lessons on How to Cure Cabin Fever from Yoda the Cat

10 Lessons on How to Cure Cabin Fever from Yoda the Cat

 #1: Stake your claim to the couch immediately. This may involve sprawling out on the centermost cushion so that no one else can possibly sit on it.

#2: Find the softest, fluffiest blanket and burrow into it, even if it means kneading at the fabric until it reaches the desired level of softness. So what if the trendy Ikat design now looks like a mohair version of Jackson Pollack’s paint splatter technique? YOU are comfy.

#3: Become fascinated by anything that moves. Ascertain that you are better than it. Then move on.

#4: Glare at all houseplants. Do not be fooled by their stoic silence. They are trying to upstage you with their prettiness. You are prettier. Do not forget this.

#5: Be that creepy neighbor who stares at passerby’s from between the blinds.

#6: Yowl if you are not fed fast enough. This transgression is unforgivable.

#7: Entertain yourself by knocking down small objects. If anyone complains, blink innocently and call it modern art.

#8: Greet any fellow cohabitants at the door and demand immediate attention. You are, after all, the epitome of cuteness, and as such, are deserving of EVERYTHING.

#9: Sleep. Stretch. Eat. Repeat.

And if all else fails…

Just poop on the floor.

An Open Letter to My Insurance Company

An Open Letter to My Insurance Company,

Dear Sir or Madam,

I hereby humbly suggest that you reconsider your denial of my petition for a PICC line so that I may receive IV therapy for an illness that has plagued me for over three years straight. While I appreciate your statement that there is not enough medical proof that having this treatment will help me, considering I had a PICC line for four weeks three years ago (and naturally the thought that I may have been bitten by another tick and infected with other co-infections that I did not have before has obviously not occurred to you) let me educate you on one simple fact. I have tried EVERYTHING. This is my last and best option for getting well. And while your suggestion that I pay out of pocket is adorable, I must ask you how many subscribers you have who can’t work due to a debilitating illness have the cash to spare for a treatment which would cost more than it would take to buy a used car for just one month of treatment? At the risk of sounding crass, I believe you know where you can put that suggestion.

In summation, may I remind you that my doctor, one of the few world-class physicians actually literate in this complex and devastating disease, believes that this is a treatment I need to get well, as he has exhausted every antibiotic option with me as well as several herbal, homeopathic, and dietary, over the past year. Therefore, I ask you to kindly reconsider your denial of my claim. Because, to put it bluntly, I’ve already had to give up standard human privileges like, say, walking, driving, working, general happiness, and consuming copious amounts of gluten, dairy, and sugar.

Shall I break it down further? My body is falling apart. I have not been able to leave my residence without assistance for over thirteen months. I subsist on a handful of meals designed to provide as little inflammation as possible. I plan my days around taking medication, supplements, and tinctures every couple hours. My nervous system is as mangled as a switch board after an electrical fire. And you have it within your power to grant me access to the last modicum of hope I have left.

Use this power well. Because if you don’t, well…

Karma’s a bitch. 

Sincerely yours,

The Foda

 

“Pieces of Me”

This poem is for the brave souls fighting through chronic illness or trauma, and for their caretakers who sacrifice so much through it all.

For Mandalf, who is off on a TOMS giving trip in the Dominican Republic right now: I love you.

“Pieces of Me”

The date was going very well

Ambient lighting overlooking fine fare

With one french press

And two cups to share

The smell of salt was in the air as we sat in that Starbucks on Thanksgiving day

Word association played back and forth like proverbial ping pong volleyed from two pairs of perky lips

Tell me quick, he smiled bright

First word that comes to mind

Pillow, he said

Talk, I said

Rain, he said

Singing in the, I said

Pieces, he said

Reese’s, I said

His eyebrows raised like wigwams

I think I’m going to like you, he decided

Very much

We still play this game

So many years hence

But my answers now reveal my fate

I never could have known back then

Pillow

Sleep

Rain

Tears

Pieces

Me

His fingers intertwine with mine

Wrapping strongly in the toughest weave only trauma can forge

And though this illness has claimed pieces of me

Our hands hold on

Clocking countless catharsis

Knowing even though so much has changed

The laugher less frequent

The light in our eyes dulled like a dimmer switch with each passing year

These pieces we’ve lost will someday reappear

For after all

They are only pieces

And the rest still remains

Waiting to welcome them warmly back home

“Jump Back, Socrates”

“Jump Back, Socrates”

 Today’s Words of Wisdom: 

“Tension is who you think you should be. Relaxation is who you are.”

~Chinese Proverb

 Shhhhh. Okay, come in quietly. No sudden movements. Why? I just realized that I’m on a very precarious teeter-totter, and I must remain perfectly balanced. Or. Else. I. Will. Go. Boom. Just take a seat, nice and quietly, that’s it, roll heel to toe… wow, you do that so well. Were you in marching band? Oh, right, the teeter-totter. Well since you’re here and being so obliging and all, I guess I’d better explain.

I’ve just come upon a frighteningly deep discovery. Super existential. Insanely philosophical. And I wasn’t even wearing my what-does-it-all-mean fedora. (Very different from my fooled-you-into-thinking-I’m-a-hipster fedora.) GAH! Almost fell. Well, that’s what I get for segueing from my profound revelation to festive headwear. But I digress.

Okay, here it is. My discovery. My Luke-I-am-your-father of all plot twists. And I’ll tell you right now, I’m not entirely certain it’ll make any sense to anyone who isn’t in my head right now. But here goes.

I have gone my entire life thinking that if I can’t logically, verbally, succinctly describe and define who I am, than I must not know who I am. Now compound this by the fact that I’ve spent the past three plus years trying to discover and redefine who I am now since my life was turned upside down by Chronic Lyme Disease. So this is an equation I’ve been working on for over three years… balancing on this damn teeter-totter, trying to figure out where I need to land, how I need to look, to think, to act to make my life matter… and here’s the kicker: I’ve only just now realized that I’ve only been considering HALF of the equation! I’ve been super serious and all tense and focused on the brainy analytical side of it all, focusing on all these unanswered questions… without once considering that I have, perhaps, fundamentally, despite sickness or health, never changed at all.

I know. Jump back, Socrates.

Which means all these pressing questions? Are only there to satisfy the logic center in my brain. Not my spirit, soul, or any facet of my emotional being. Which means I’ve put all my eggs into the brainy puzzle-solving basket, and none into that place of knowing that has nothing to do with what’s in your noggin. I’m talking about intuition. The feminine energy we rarely acknowledge as valuable in today’s society. (The big brain gets all the attention these days. Spotlight Hog.)

Yes, what I do has changed. How I spend my time and days. My goals and outlook on life has adapted, sure. But I’ve been so preoccupied trying to discover who I should be in the midst of this debilitating illness (re: strong, inspirational, warrior woman) that I never stopped to think that just because my brain is telling me that since my circumstances have changed, (meaning I must, naturally, agonize over what this means for my life purpose) doesn’t mean that I don’t know myself. Step away from the spatula, baby! This hunk of clay is here to stay.

So, I guess you can move around now. Because I think I’m finally ready to get down off this tiny point I’ve been balancing on, trying to work out who I should be in light of all that’s happened in my life. Because what you do isn’t who you are. That’s backward. Who you are drives what you do, and how you do it. And what you are may not be definable. And what if the only one demanding you define it is YOURSELF?!!

Meaning me. I mean me. I’m the only one demanding I figure out the mathematical solvency for chronically thriving. Which means… I made my brain the boss. And ignored my gut. And now that I know I’ve been working for that incessant workaholic, I don’t have to devote every minute to appeasing it. And golly gosh darn, doesn’t that just sound like the most relaxing breath of fresh air I’ve ever heard.

After all… what if it just doesn’t have to be that hard?

Off-To-Enjoy-Newly-Mandated-No-Analysis-Hour,

The Foda

“The Antithesis of Fear”

Happy Halloween, everyone! Sorry I’ve been off the grid for the past week or so. So, I’ve been obsessed lately with exploring the concept of “fear” and how it affects our lives when going through a long-term, chronic illness or trauma… perfect timing for Halloween! Here’s a little humorous beat poetry for you with my latest musings on vanquishing a fear-based life. Enjoy!

The Foda :)

“The Antithesis of Fear”

The antithesis of fear isn’t courage; it’s curiosity.

What we are open to

What we question

What we examine with the child-like zeal

Once only reserved for questions like

Why is the sky blue?

Or

How can ladybugs procreate

If they’re all girls?

(Because.. they are not.)

Which begs the question

What idiot named them “lady”bugs?

But I digress

Telling a person not to fear

When their world is under siege

Is like telling a banana not to curve

(Fruitless) <— hehe!

You cannot abolish emotion

Unless you are a hologram

Who likes to read quasi-poetic rambles

Which is a highly unlikely scenario

But you

(Yes, you)

The human

 Can substitute one emotion with another

Like a metaphysical Yankee Swap

Flipping “I fear”

Into

“I wonder”

For fear is an absolute enigma

Ready to ram you like the Rhino it is

But curiosity is the wind

Always changing

Open ended

And just as strong

The antithesis of fear isn’t courage

It’s curiosity

Get some.

“Wampas and Probe Droids and Ferdinand, Oh My”

“Wampas and Probe Droids and Ferdinand, Oh My”

 Today’s Words of Widsom:

 “Everything you want is on the other side of fear”

~Jack Canfield

 The Foda’s Take: This quote makes me think of that awesome scene with Richard Gere as Lancelot in the movie “First Knight” where he defeats the formidable obstacle course that had- quite literally- given the old heave-ho to all who went before him. When asked how he accomplished it, he said it was because he wasn’t afraid to die. To which King Arthur replied: “A man who fears nothing is a man who loves nothing.” Soooo in conclusion… if you love something… today’s Words of Wisdom apply to you. BAM! Foda-ed. (Foda-ed! You know, like “Lawyered”… sigh. So not funny now that I’ve explained it. But to be truthful, you would have really needed to hear me say “Foda-ed” to get it right away… stupid inflectionless print!)

 Hello, friends! So, ever since I saw this quote a week ago, I haven’t been able to get it out of my wee little brain. Mainly because it is currently very relevant to my life. And it may be very relevant to yours. Living through an extended chronic illness, personal trauma, or intense struggle, changes you. It widens the world, banishing all perceptions of teenage invincibility or “that can’t happen to me.” It opens the door. (You know which door I’m talking about, people.) That  door. The one with the monster behind it. That’s right. The Wampa Snow Beast of Fear, all yowling and drooling scarily.

And it makes sense, doesn’t it, that you’d have more fear in your life. Something really bad has happened to you, and now you’re on edge- alert- your radar has suddenly been switched on. You’re like the Empire probe droids dropped on Hoth, scurrying around babbling nonsense as you search for signs of trouble.

Sidebar- anyone else like to try and mimic that monotone robotic dribble from time to time? Just for fun? No? Just me? Ah. Right. Moving on.

So, the point is, when you’re going through a lot, it’s a natural side effect that there will be more fear and more anxiety in your life. After all, you’re probably spending a huge amount of energy every day tamping down those pesky feelings that accompany whatever ails you. And it makes total sense that this wears your down, allowing fear to play a bigger role than it would if you were all fresh out of the bullpen.

Am now thinking of the book “Ferdinand.” Great book. But I digress.

But you’re not fresh out of the bullpen. You’re probably tired and worn down and now you’re scared- scared of what this is doing to your life, scared of how it’s effecting your loved ones, scared that it won’t be over soon. And by you, I do mean me… just to be clear…

So lately I’ve been coming back to this quote. Because I’m not going to stop the fear from coming. It’s a natural response to what’s happening in my body and my life right now. But somehow just recognizing it, remembering that there is a path past it… helps.

And I hope it helps you too.

<Empire Droid Babble>

The Foda

“The Torn Identity: Rebirth Through Chronic Illness”

“The Torn Identity: Rebirth Through Chronic Illness”

Today’s Words of Wisdom:

“We know what we are, but not what we may be.”

~William Shakespeare, Hamlet

 The Foda’s Take: And yet, so many of us don’t truly know what we’re made of at all until we’re tested in the most vigorous of ways.

 Howdy, folks! Today I’ve been thinking a lot about identity. It’s no small thing, knowing who you are, what you stand for, and what mark you intend to leave on the world. For people like me who are battling a chronic illness, you have likely already found that one of the hardest things that accompanies a long-term illness is the identity crisis that leaves you questioning: who am I now, and what will I do?

Before I got sick, I defined myself by the accomplishments I was most proud of. I was a runner, a singer, an actress, and a teacher. (I mentioned this in a post I wrote for the blog “Words from the Sowul” on redefining “beauty.” Click here to read!) Now, due to the extent of my illness, I can’t run, don’t have the breath-support to sing, and can’t act or teach…. mainly because those are both activities that require you to be able to move around.

It took me a really long time to figure out who I am now, and rework how I view myself so I’m not just the “sick girl” who’s waiting for her life to change. Starting up this blog has really helped me with that. This journey has forced me to strip away all the superficial layers of myself to find the deepest cores within. I realized what defines me and makes me special isn’t just singing, acting, or teaching, it’s creative expression. In having to redefine myself, I discovered writing, and wrote my very first fantasy novel, which is an accomplishment I’ll always cherish. I’ve learned what’s really important to me, and when I’m better- because I will get better- I won’t mess around. I will approach life with such tenacity and confidence, because I know now how resilient I really am, even in spite of how beat down I physically feel.

This illness has started a rebirth. It’s painful, often unpleasant, and very, very hard. No one likes to look in the mirror and realize that who they were has been ripped away, and who they are is a blank canvas. Which, as any painter knows, can be overwhelming at first. But think of it this way. Now you get to decide what picture to make. Not your childhood friends or your teachers or your parents. You and only you. This is one area in your life you can control right now, when you may feel like nothing else is. You get to change your picture. Start fresh. Explore things you never thought you’d do. I never thought I had the discipline or motivation to write a novel. And now I’m working on book two with the full intention of creating a trilogy.

You just never know. And maybe, just maybe, one day you’ll feel better, and you’ll not only know what you want- which, let’s face it, not many people do- but you’ll know you have what it takes to get it. Because if you can rebuild yourself from scratch… well, you can do anything, right?

Go ahead. Pick up the paintbrush. Make a new mark.

<Swwwwoooooosh!>  Oooh, pretty.

Happy Painting,

The Foda