HNY my Warriors.... and those who know you.

Happy New Year everyone!

I hope your holiday was enjoyable and allowed you many moments to relax.

I took some much need time off to spend the holiday weeks with my lovely family. While I was not spending hours pounding away at the keyboard trying to reach the completion of my manuscript, rest assured, I was still jotting ideas and paragraphs via my iphone notes app per usual. Some things will never change.

I wanted to take this moment to speak to you a little bit about chronic illness.

I mentioned in my previous post about my becoming aware of my membership into the exclusive "Spoonie" club. I did not ask for this membership nor did I willingly sign up for it. My book, exceptionally average, is about how I ended up here and in this condition.

I don't call this a journey. I've said it before and I'll repeat it again, my belief of a journey implies something that is pleasant to me. That's me. I know others consider it the steps they've taken to get from point A to point B.

The events that I have experienced in my health, misdiagnosis and failings of medical staff make me feel if I was hijacked or kidnapped. It feels like a toxic hostage takeover. The current state of my body is one of constant strife. It's sad. It's exhausting. It's frustrating.

So, when YOU think of chronic illness what comes to mind? I know my fellow warriors can rattle off a litany of symptoms but for those you who aren't a part of this "club" what do you think of?

Headaches?

Exhaustion?

Muscle spasms and/or soreness?

Joint pain? Fatigue?

Those are the common answers but don't come close. These symptoms and conditions are so much more than the inconvenience of gash on your dominant hand or a weather related pressure headache.

It feels endless. And while most chronic illness suffers don't have all of them, many have multiple and they have far too many that constantly change, alter, and morph into others all while showing up on a daily basis.

Things like Tinnitus, itchy skin and open wounds that don't heal. Nails that are deformed, ear pain and eye twitching? Brain fog or memory issues. Dizziness.

Muscle loss, burning muscles.

Breathing difficulty or shortness of breath from just walking across a room or turning over in bed.

Dry skin that cracks and bleeds, stomach ulcers, uncontrollable weight gain or loss.

Hair loss, lack of appetite, food allergies.

Gene mutations and autoimmune diseases that don't allow their body to process or detox or metabolize. Nutrient absorption issues.

Sleep disorders that never allow REM sleep, lack of sleep or the opposite, but still never feeling rested or recharged.

This list is a small sampling of the harsh reality of Chronic illness suffers, Warriors.

We refer to each other as warriors for the simple fact that anyone who can pretend to be normal while walking through their life in constant daily pain is, in fact, a Warrior.

You've met these people. They're all around you. There are over 155 million Americans that live some variation of this everyday.

Cancer patients, Migraine sufferers, Lupus, Rheumatoid Arthritis and Sjogrens sufferers, Thyroid patients, with or without autoimmune Graves or Hashimotos, Fibro, Lyme, Cushings, EBV, MS, IBS, Diabetes, parasite and virus carriers.....and on..and on...and on.

Yes, yes, I know, "Can't you see a doctor about that" or "Isn't there medicine for that?" are typical questions. Frankly, the short answer is no.

Not no, like we haven't tried. Believe me, We've tried and are still trying. Most of have been to dozens of doctors and have been through an exhaustive amount of testing. With each visit and each test and each prescription we have hopes that this time there will be an answer or cure but the sadder reality is we have found doctors who are dismissive or only interested in band aids to try to maintain life, regardless of quality, rather that solve and end our discomfort.

Many of us long for our old active, productive lives. We mourn and miss the old "us" and resent whatever illness that plaques us and refuses to depart no matter our efforts.

And now we have new members joining the group: The Covid Long Haulers.

My message to all of you Covid Long Haulers; Sorry but welcome to the club. You are not alone.

For each one of you who is new to the repetitive tests, excessive appointments, the mounting questions with zero answers and the struggle to literally just show up to your own life, You are not alone. We feel you, we sympathize with you and we are in your corner cheering you on and hoping you recover. We have been living like this for years and wouldn't wish it on anyone. Ever.

I have seen a few posts on various social media mediums about long haulers who can't understand why they aren't better yet. I understand completely. Some things look so straight forward or you feel like they should be yet we, as a collective group, have found that our medical community, while some are amazing, because seriously science can be stunning, are completely lacking. Either our diseases have become too sophisticated or our training of medical staff too naïve. I suspect it's a combination of both but that doesn't ease the minds of people in chronic pain. Each day we get up, show up and continue the battle and quest for our holy grail.

For any of you who aren't one of us and have no idea what it's like to live this way: Kindness.

That's all we ask. It's easy to be kind and know that every single person is dealing with their own demons, struggles or internal battles.

Not all of us can wear our illness like a sign that gives you a heads up or warning. Most of us are so sick of talking about our condition with a million doctors or trying to do research to be our own patient advocate in between our actual life, family and jobs that we won't announce to everyone that we are struggling. We won't share the details of the things we are trying to make disappear.

It's safe to say that you can assume that 1 of every 3 people you know has something whether they tell you or not.

So in this new year, with the current world in whatever state it's in, Please let us all try to be more understanding and kind. Your smile and patience can mean the world to someone in the middle of their already difficult day.

Thank You.

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#Spoonie? ..... what the heck is that anyway?

A handful of people have asked me what a "Spoonie" is and how it applies to me. I'll be blunt and tell you I had no idea that I even was one until a few months ago.

I kind of knew what it was about and had an some idea that it had to do with people who have a medical condition, disease or illness...something with lupus, maybe? I wasn't a hundred percent clear on the specifics and, in all honesty, figured I would read up on it later.

Later became now, so here is some basic info.

A “spoonie” is a term used by people with chronic illnesses.

It stems from lupus blogger Christine Miserandino who explained her lack of energy using spoons, yes like the actual silverware kind.

Chronic illnesses often cause daily chronic pain and fatigue. This can range from tolerated mild discomfort and aches to debilitating agonizing pain that leaves you unable to show up to your life.

The Spoon theory is a metaphor that is used to describe the amount of mental or physical energy a person has available to them for daily activities and tasks.

You can read her article here.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

And for a visual example here's a fancy chart. There are a million versions of this if you google it but this will give you an idea.

That is a fairly simplistic answer that may leave wondering what that has to do with me and how it applies to my book. I can tell you that I don't have lupus or endometriosis or POTS or PCOS but every single day I do have chronic pain and fatigue. I have been chronically ill now for over three years and whatever is making me sick is still a mystery, to everyone. The absolutes of my health don't add up to my continuing symptoms and the stranger part of my story is how I found out that I had any illness at all.

My book, exceptionally average, takes you through how I got to the point where I'm at now.

I can't call this a journey as I generally associate the word "journey" with something pleasant. This has been one of the least pleasant experiences of my life.

Have I been educated? Yes! 100%. Am I exhausted and sick of feeling sick? Yes!! 100%.

I give you my first hand experience and living proof examples that there are heroes... and demons in our healthcare system.

The saddest part of my experience thus far, beyond my continuing unsolved pain, is that I have found amongst us lives warriors and survivors in the millions. Whether they call themselves Spoonies or not, in the US alone, there are over 155 million people who live daily with chronic illness. That means that almost every other person you know or meet is fighting something.

My book is my story. It is the harrowing tale that half of you will be shocked to read and the other half will raise your hand and say "Same girl. Same"

If you want to know when my book will be published, please sign up for email updates.

Thx. ..and please take care, choose wisely and don't waste your spoons.

Counting Down

Whether you are "into" the holidays or not we are in the countdown to the end of this crazy year of 2020. A mere 31 days until we enter what we hope to be a better next year.

Some of you will find great comfort in the traditions you normally share around this time of year. Some will take joy in the creativeness of modifying your typical rituals, while others will continue to do their normal and retract into their own world and look forward to all of it to being over.

Whatever you choose, I wish you well and success in your endeavors.

For me, the count down brings me just that much closer to the deadline of getting my manuscript completed. I have a due date in mid-April but am pressing myself to be completed way before that. Before I can send in my proposal and sample chapters I'll need to get a few beta readers to spell check me and confirm that my story flows along smoothly. So much to do, so much to do.

Getting all of my ducks in a row in the middle of holiday season is a tall order since I am not one to retreat, regardless of how I am feeling. There are decorations to arrange and presents to wrap. I'm told there are cookies that need to be baked and I actually wrangled my teen into helping write out holiday cards this year, so I feel like a scored "a win" there. I'm really not to different than any of you with kids who have seasonal expectations. I spend my days dealing with extra school homework all while assuring children that the teachers are not being hateful or a scrooge just because they're giving a little extra work to cover for the time they'll have off, sharing the wish lists with family members, organizing doctors and lab appointments around asynchronous school days and my husbands meeting schedule....you get it. The list goes on and on and somewhere in there I have a book to finish writing.

I've asked Santa for some extra energy and a few extra days in the week. Easy, right?

No matter what your December looks like I hope you handle it with love and grace. Be gentle with yourself and your loved ones.

**If you'd like to share a creative way you've modified or altered a holiday tradition I would love to hear about it.

In the mean time I've got some ornaments to hang, oh.. and some writing to do but I'll give you guys a shout out again soon.