Frankly, the Truth: Part One

Equal parts of wanting to go and of not wanting to go.

Just what The Doctor ordered...

Just what The Doctor ordered…

Two weeks of holidays for the Go, Go SpazzyAss here lead me in directions I’d never imagined and, frankly, not really all that proud of, on occasion.

Thing is this: Autoimmune disease + people + obligations + family + job = recipe for breakdown.

Peeps. Breakdown is what I’d never imagined. Complete and utter *middle finger salute* to the Cosmos because, frankly again, I’m fucking spent.

I had a breakdown a few weeks ago. Emotionally done. Spiritually spent. Physical fucktard-ery.

And, I went camping anyway. I always make amazing memories whilst living outside for 14 days, so, what on earth was making me still so inner-ragey?

“Everything.”

I’m not choosing not to, friends…I simply can’t. Cannot. Unable.

And, more importantly, won’t.

It wasn’t the fact that the energy leading up to Fest time wasn’t already wonky, at best, cruel-speak, at worst. I’d self-imposed a Facebook break. An adult time-out, if you will.

It was that I’ve been crying out for help for months because of…

Well…let’s back shit up a lil’ bit, shall we? Let’s be brutally honest because, frankly, I’m not hiding ANYthing, anymore.

True story.

Four years ago at Kaleidoscope Gathering, I’d been preparing myself to tell my husband about the “timeline” I’d been given two months prior. It was to be during our holidays together…him and I. But, why did I hold on to this information for so very, very long?

Because, sometimes, I wish people didn’t know I was sick, at all. Some days? I’m kind of sorry I even brought it up and out. Nothing has changed in my own personal reality and, frankly, why would I bother? I’m not in it for the pity party or the “Call the Waaaaaaaaaaaaa-mbulance” …

…Nope.

Nopity Nopers.

That KG I’d left telling him to the absolute very last minute, ended up telling my dear friend first AND, apparently, didn’t “tell the rest of my friends properly”…because telling people you’re dying’n’shit is oh-so-very easy to script out in the nature of…nature. There’s no fucking manual, y’know.

Five years.

I’ll wait whilst you do the math.

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Anyway, flash forward four years to this KG whose theme was “Bone Dance” and I suddenly found myself in a trifecta of “Holy fuckernackles, reality just called and wants their balls back…”

Rhian died within three days.

Am I going to do the same? Hell if I know. The Rituxan infusions are my last best-for-now hope, Obi Wan…but…awesomely…I have to wait until school starts to continue because, thanks for all the offers, but I’m not infusing whilst working 10 hour days with 7 kids in the house.

HELLS NO.

But, the perspective of one’s own mortality comes crashing through each and every emotionally crafted wall like the fucking Kool-Aid man, friends. Let’s now put that mortality within the context of ancestors, mortality and other ways the Bone Dance theme applied to my personal spirituality…

Then, there was the getting of the heat stroke. That was spectacular. Having your brain not able to cooperate with your mouth and of the doing and of the speaking of all of the words…was not my idea of awesome. Just sayin’.

THEN…and this is the biggie…there was the cardiac ischemia event that, I swear to you on all things you consider holy, was going to take me out in the middle of butt-hell nowhere. That was this past Thursday. So, I got to continue on in true badass fashion…AMA. Against medical advice. Because, frankly, the thought of going home to the “Everything.” of my reality was making me want to vomit, whilst being in nature with friends seemed so much more…therapeutic.

Executive decision.

I love my RNP. She is the schizzle and is not afraid of an emotionally broken woman talking to her at 5PM on a Friday afternoon because she’s scared she’ll go to sleep and never wake up and, frankly, kinda sorta maybe-ish doesn’t really want to.

Oh, wait…it gets better. True story.

I also sent my family home.

Oh, yes. I channeled my inner not-a-fuck-to-be-given and firmly indicated to my husband and children that they were to just leave for [enter time period here] or I was simply going to give it all up. Children to each of their dads…Husband to file for divorce…family to go on and live lives I clearly wasn’t meant for because, frankly, who on this beautiful blue and green orb hurtling through time and space thinks living like this is…life?!?!

In the middle of my angst?

Friends.

Brothers.

Sisters.

Friends offering hospitality of food, safety, comfort, reception of my emotionally charged spewage of tears, and safety. Dancing in the middle of the field under the stars with an epic friend. Letting the proverbial shit go.

There was nature.

Time didn’t exist.

And, when my family returned, it was with the understanding that things aren’t going to be the same as the things that came before.

I’m resigning from my station as President of the Condo Board of Directors.

I’m not going to be doing daycare during the summers.

I’m asking for help to complete a part-time program that will allow me to 1. NOT do daycare at all and, 2. Allow me to work from home.

My boundaries and limits have been established because, by the gods, I will not die due to the circumstances that the people who love me put upon the very nature of my reality.

It’s not fair, and it’s sure as shit not acceptable.

I’m changing the game of chronic illness, but, frankly, it does really tie in to the realities of so many other aspects of living and of the “Everything.” that I can only do the best that I can with what I’ve been given.

Doesn’t mean I can’t redefine the process.

Doesn’t mean I’m not going to illustrate with full transparency the nature of living with an autoimmune disease along the way.

Frankly, someone, somewhere, is going to know, absolutely, what this reality is really like.

Sometimes, that brings me comfort.

Yet, the stresses are still there…planning how to get back-to-school clothes, shoes (omfg, the shoes!) and how to pay the plethora of fees that having eleventy-billion kids can offer…a twin with an upcoming surgery at a hospital 45 minutes away because, frankly, it’s the soonest anywhere would take him… My eldest son, unfortunately, will be leaving the home again at the end of this week. I am sore and heart-sad and my soul is crying…but…it is what it is. Own your shit.

This is what living with an autoimmune disease is really like.

And, oddly enough, I haven’t even covered the pain…

This, my friends, is my made-for-tv-movie kind’o’life…kicking ass along the road of chronic illness…one game at a time.

I hate it.

And, frankly, I will continue to live it, anyway…

Part Two? That’s for the memories I took away from my two weeks of earthing…glorious, profound memories…I just really needed you to understand the foundation upon which my memories are being made.

Believe. Do. Repeat.

3 responses to “Frankly, the Truth: Part One

  1. Allyson Luedtke

    Thank you for speaking from this real place. I’ve been told twice in my life that I’m dying. The first time was while I was pregnant (nearly nine years ago), and doctors insisted that I could only survive if I terminated the pregnancy within the next 72 hours.

    I chose to listen to my own instincts and rely on options like reiki. With the combined strength of of both ” accepted medical practices” and alternative options to support those practices, we somehow made it. It was touch and go for our tiny warrior those first few hours and days, but she’s still a fighter– and I love that exasperating little fury in her.

    A couple of years ago, while investigating something, doctors found a cyst the size of an orange in some out-of-the-way real estate and declared me bound for the cancer centre. Colour me stunned. The medical world seemed pretty miffed that I had no answers for them. I had no pain to report, no unusual symptoms besides my ongoing laundry list associated with two chronic conditions, and nothing which had shown a cyst previously.

    It still took them 6 months to get “experts” involved. I realized that if this was as serious as they seemed to think, then I didn’t have much time left to wait for them to “officially determine ” how much time I had… So I had to start living like it mattered.

    I looked around and declared “I’m not dying with this kitchen.” It sounds shallow, but it means much more, based on my own bevy of life traumas and my own journey of healing. So I started ripping the cupboards out– I had just lost my only paying gig, and had nothing else on the horizon. My husband joined me on the journey of manifesting repair, and the kiddo grabbed safety goggles and a hammer as well.

    The “experts” declared that the mystery cyst should remain a mystery, and body wants to poke at it… My kitchen is mostly put back together. My family has a better understanding of how we all fit together, and I’m no comfortably living my life through art— because that is what is true for me when you burn everything else away.

    Keep walking your own path beautiful soul, and know in your heart that the doctors don’t own the magic that is our bodies. We all heal differently and for completely different reasons… The medical industry just doesn’t always talk about the ones that got away.

  2. Thank you again Pattie and I am glad you are back.

    I by no means know what you are going through, I by no means understand what it is like to be given a time line, I by no means want to loose the most amazing soul this earth has, or that I have the luck to know (and hug on occasion). I wake up with pains (daily since I was 16)), but think of you Pattie and realize that it is nothing in comparison and it gets me up and out, I have an owie on my foot, think of you Pattie and realize this little pain is nothing compared to what you have and what you do daily with it, so I go out and do what I need to, I feel sorry for myself Pattie, and think of you and the courage you have and realize how petty I am being. I have an amazing husband, a job I like, no debts, so my life is great. So I have some shit going on in my body, we all do, some of us more so then others, and it is how you live your life that defines you…. and you are the definition of a HERO, you are the definition of an amazing mom, you are the definition of hope! So thank you Pattie for saving me!

  3. Pingback: Frankly, the Truth: Part Two | Lupus Interrupted

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