Answer to Question #1

If you’re in pain all the time, are you in pain now?

This one was submitted by @painydays from Twitter (whose website ROCKS and is linked via her name), and it has a special place in my heart because the logic is so hilarious.

Pain isn't pretty, although many of us who live with it are.

Of course, conversations don’t flow this way, so we need better answers for people who ask this (rather obvious) question. My answer depends on the context and tone in which it’s asked:

• If it’s asked by a friend with genuine interest and curiosity, I may respond, “Yes, even now. Thank you so much for your concern and empathy and willingness to listen to me and acknowledge my journey. I’m not paying attention to the pain right now because I’m enjoying being with you, but if you’re curious, I can check in and tell you exactly where things are hurting.”

I love to be asked by supportive friends who really care to hear my answers. In fact, they can ask me anything if they really want to hear, and I’m relieved to have a place to share my experience openly. It’s so much better than being all alone.

• If the question is asked in a different way, without the loving support of a friend, I may think to myself, “Of course, Sillyhead. That’s what all the time means. It’s like Interrupting Cow. Even though I may try to focus on something else: every moment of every day, all the time, no matter what, I am in pain. And it sucks. Thanks for reminding me.”

I struggle when asked by people who I trust must mean well but seem to be treating me like an alien; which, compared to their reality, I suppose I am.

• A response I’ve found helpful for people who ask if I truly am in pain all of the time (and aren’t looking for a deep conversation about the reality of life with chronic pain) is: “Yes, unless it’s an especially good day or I’m especially well-medicated. I’m getting stronger every day.”

I always recommend preparing answers for commonly asked questions from strangers, and it’s OK to not tell them the whole truth or to answer the question you wish they’d ask.

If you’d rather answer the question “How do you cope with constant pain?” or “Are you OK now?” or another question, I give you FULL PERMISSION to do it. (Not that you need my permission, but if it helps, you’ve got it!)

If you want to answer with a simple “Yes,” and change the subject, go you!

And if you want to educate the questioner about the reality of chronic pain and that yes, it means you hurt now, you hurt yesterday, you hurt 12 years ago, and it’s looking like you’ll probably hurt tomorrow, I’m here to support you 100%.

Just please answer the way that serves YOU best.

You are my heroes, Dear Friends, and if you are in self-care mode or advocacy mode or sassy smarta$$ mode, I support you and trust that you are choosing what is best for you.

YOU are the one that matters to me.

Remember: the Peace of Self-Acceptance + the Joy of Self-Expression = the Love of Yourself and the World. And Pain or (PLEASE!) Pain-free, we all want that.

Thanks for sharing your day,

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What You’ve Always Wanted to Know about Life with Chronic Illness but Were Afraid to Ask?

The ever-so-patient Patient is in.

Yep, I’m here to answer all of your questions with the fullest disclosure I’m willing to share. Yep, even about bodily fluids.  See my page-full of diagnoses at Meet Juliana (above) to get the ideas flowing. (Pun unintended.)

We’ll see who cries “TMI!” first.

What have you been itchin’ to ask?  My twitter friends have given us a great start with questions they’ve been asked (edited out of twitterese):

• From @Jess_ME_CFS: “what, so..if you’re in pain all the time, you’re in pain now then??! blimey!”
• From @painydays: “How do you manage?” “Is it all in your head?” “What does it feel like?” “How can I help?”
• From @Brainzooming: “People ask my wife when she’s going to get better.”
• From @FeliciaFibro: “What’s the current research?” “What are your conditions?” “What should I read to get more information?” “What doctors do you recommend?” “Is yoga good for you and others with chronic conditions?”  ”What meds do you take?”

From Facebook, I have these contributions:

• How do you cope with the hardest days?
• What are the hardest days like?
• What does it feel like?
• How do you deal with the people who say “Well, you LOOK fine”?
• How do you do all you do?
• How do you keep your spirits up?

I’ll be answering these over the next days, as migraine, weather, and pneumonia recovery permit. And I double-dog-dare-you to add your questions to the comments section!

You ask; I’ll answer.

Thanks for sharing your day,

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Guest Post from Another Adversity Hero

Welcome to This Friday’s Special Guest!

Good morning, everyone, I’m Aiden from Liz Borino’s Contemporary Romances Expectations and What Money Can’t Buy.

The Story Begins...

Thank you, Juliana, for inviting me to come here and talk about how I overcame adversity, or as you like to say “turn sh$t into flowers.” I like that.

My childhood was pretty much the definition of shit. With a drunk, abusive father, a mother who cowered instead of protected, and a baby sister who depended on me, I didn’t actually have much of a childhood.

One bright spot, possibly the only one, dance. From the time I was five years old, I’d wake up at 4:30, do morning chores (we lived on a farm), get my sister ready, go to school, and then I’d escape to dance class.

For an hour and a half every day, nothing could touch me. Well, nothing except the flow of music through my body. It was only here I could be totally free, completely me. I worked through the pain of my life every afternoon and then rushed home to make it in time to chop wood for dinner.

It worked well, until a winter night when I was seven. My father went into town to visit the bar after dinner. I stayed home to care for my baby sister and my ill mother. The flu, I think it was that time. All I remember, she was puking and Meghan, my sister, was pooping. Both of which I had to clean up. My father throws open the door hard enough to make the whole house shake. Shook so violently that if I wasn’t holding Meghan as I changed her, she’d have rolled onto the floor.

“Desmond!” he bellowed. How I hated that name. It was his name. I wasn’t him. Never would be. Never. I could smell the alcohol from the loft where my sister and I slept.

After I placed her on blankets, I made my way down the ladder. Didn’t make it to the bottom before he grabbed my leg and threw me on the ground. I couldn’t think when I heard my leg snap under his weight. Yes, he climbed on top of my tiny seven year old body. Broke my leg, nose, and a few ribs.

Why? My dance instructor told him about my progress. I was obviously forbidden to ever go back. He threatened my life if I did.

I believed him.
I went anyway.

For the month it took for my leg to heal, I observed. After that, I danced as if to save my life.

It did. So many times. Dance allowed me to dream of a better life. Not only dream, but build. Could’ve given up. But I knew it would kill me. I wasn’t prepared to die.

At seventeen, I went to NYU on a full dance scholarship. Eight years later, I own my studio in the Village. Chris and I are very excited to be parents. And I know, today even more than in my childhood, I am not him.

There’s way too much good in life to allow the shit to get in the way. What you love is worth fighting for. Whether it’s a person, career, or art, it’s worth it. Remember that.

Book Two...The Story Continues...

Ready for more?

Expectations depicts the struggle between what we desire for ourselves and our familial obligations. The struggle is personified by Chris and Matt Taylor, identical twins, who are trying to win their overbearing father’s approval and acquire their trust funds. Love, money, and desire collide as Matt and Chris decide what’s really important to them.

What Money Can’t Buy, the sequel to Expectations, finds the two couples, Chris and Aiden and Matt and Carley, eagerly anticipating parenthood. However, their personal struggles continue. Though Matt overcame his dependency on alcohol, new temptations present themselves. And with Carley on bed rest, these temptations put a greater strain on their relationship. Chris continues to deal with issues regarding his father. These issues increase with greater proximity.  When tragedy strikes, the best and worst in everyone is revealed. Can they stick together, or will their reactions tear them apart?

Liz Borino, Most Excellent Friend, Supporter, and Author

Liz Borino knows a thing or two about overcoming adversity. Having overcome a learning disability and coping with leg pain, she bravely writes to share the hope she’s found in thriving in a world which wasn’t always welcoming.

I hope you dance.

Thanks for sharing your day,

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