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A working professional and part-time writer, full-time Mom and modern day Alice in Wonderland...

Friday, February 23, 2018

Those Angry Days of Living with HS

There is a fury inside of me today that I am trying to quell with seemingly copious amounts of Motrin and coffee.  Today it feels like my pain is more than just topical in nature.  There is hot anger running through me and this anger feels like a new, unwelcomed component of dealing with my HS.  I’m beyond irritable. I am unapologetically short-tempered and intolerant. 

Since my diagnosis in my early thirties, I have lived by the rules of prevention and pain management. I have gathered what remedies and suggestions I could from the forums and tried not to be frustrated by the lack of real medical support. My dermatologist called it an “orphan disease”, abandoned largely by the medical profession. Until you are dealing with an agonizing flare up, the true nature of that term may allude you. What it really means is that there is nothing out there to treat you, no cream or ointment, not oral medication to drive the painful boils back down once they erupt. There is nothing you can take medically to control the HS, to keep it locked in remission. There is no cure. You just have to deal…deal with the pain and with the knowledge that it can take you down at any time, triggered by stress, by weight gain or just by the whims of a stalking disease that resides in your genes.  

Most days I avoid this tide of anger and frustration by counting my blessings.  I believe that I am one of the lucky ones.  My HS outbreaks so far have been limited to my upper body and with the exception of the one in my neck, and my resulting scars are largely invisible to others. This is not the case with many people. HS can be severely disfiguring.  The boils that erupt, those cysts that become infected and eventually rupture cause bad scarring.  I have seen images of young men and women with puckered tracks of scarlet scar tissue running down both sides of their groin.  It is this most intimate invasion of the disease that leads to isolation and depression for so many. 

Most days, I remember those images and the stories of the people in the forums, and I feel ashamed of the anger. Today though, I’m feeling furious with my body, with its inexplicable ability to manufacture these horrible, ugly nodules that burn and throb and swell to an impossible size.  Today I want to scream. Instead, I stock up on the large size band aids and take the antibiotics that will only speed me closer to the inevitable rupture of my skin and the formation of another scar.  The antibiotics don’t make me feel better, in fact, the doxycycline tears up my stomach but there is still that small chance that it will stop the inflammation before it progresses to that awful end stage.  There is a chance, according to my epically hopeful primary care doctor, that it may attack the inflammation and help the cysts drain and alleviate before rupture – saving me from more scarring and the general unpleasantness that comes with those ruptures.  If she can hope, I suppose I can try to be hopeful as well. Hopeful and less angry...

With all of the truths I have come to understand about HS, I am most thankful for the diagnosis. Being able to give a name to the affliction I suffered from for so long in the dark, was honestly the best thing.  With diagnosis came the opportunity to explore the research, the remedies and treatments that were available to me. Being diagnosed suddenly gave me the important reasons for this very unreasonable disease. If you think you or someone you know might be suffering from HS, this is the best, most informative and straight forward site I have come across:

If you suspect you may be suffering from HS, see a doctor, start with getting diagnosed. Find what works for you, because it’s different for everyone. Give yourself those angry, furious days…but always go back to hope. 

Tuesday, February 13, 2018

A Bottle by the Fire and a Nod to Lessons Learned.

This week I passed the 14 year mark as a member of writing.com. The email hit my inbox along with the expected reminders to update my blog...something I have been hard pressed to do much over the last two months. I could blame it on the lack of time and discipline, the usual suspects, but the truth is my mind feels cloudy - it feels difficult for me to focus. I feel limited with being able to express myself lately, and seem to oscillate between a kind of manic contentment and a crouching darkness that makes me feel heavy and hopeless at times. I know that not writing, not attempting to write, is depriving myself of something key and I feel the absence of it acutely at times. I need to press myself into those familiar spaces again, force the words. My heart needs the outlet, my soul needs the confessional, my life needs the anchor.

"Blog City ~ Every Blogger's Paradise"
DAY 1519 Prompt: February 13, 2018
Prompt: Do you think people can change as to how they view love as years go by? And how do you think they perceive love and romance in different stages of their lives?

We have all seen them, that sweet elderly couple walking hand in hand or sitting together on a park bench. They are the standard of measurement for a lifetime of love. I marvel at couples who celebrate those milestone anniversaries; 50,60, 70 years together. Ask any one of them and I'm sure they've stories to tell, stories that might sound like fables where the messages are about patience and forgiveness. To make a life with someone that spans decades, there must be forgiveness and acceptance as much as love and devotion.

The rush of falling in love is a temporary condition. The euphoria of a budding, passionate romance always gives way to life eventually. Couples marry, have children...the pace of life changes and it gets harder to manage the expectations of another amid the beautiful mess of raising a family. The definition of romance changes over time I think. It is forced to become something else...trails of rose petals and long Sunday morning trysts yield to more practical measures like being able to take a hot bath why your spouse keeps the kids from banging on the bathroom door looking for snacks. My husband is fond of saying, "that's just life" when I complain about lack of "us time" or when we go consecutive nights with a child between us in bed and dogs layered at our feet. We are not the same individuals who once kissed in a rainstorm or spent intimate weekends in romantic inns. Sometimes though, I get our daughter to bed early and go downstairs to find the fire still roaring and the room lit by glowing candles. Love and romance move through time with us, they morph and change as we manage life the best we can I think. Sometimes sharing a waning winter evening and a bottle of Cabernet with the one we love is all the romance we need.

"Blogging Circle of Friends "
DAY 1916 February 13, 2018
Write about three people from whom you've learned the most.

I've been fortunate to have had people in my life who have taught me many things, lessons that were good and bad. It is a difficult question because overwhelmingly I have learned the most about myself from people who have hurt and disappointed me the most in life. I have learned from past lovers that some men are forever damaged in ways that can not be fixed, damage that can coat you like a toxin. No one comes to save you, you have to save yourself. You have to choose yourself. In those terrible moments, you can discover a faith you didn't know you had and a strength you did not know you possessed. I have learned the most about myself from being forced into corners, from the hollow sound of my heels in hospital corridors and the fear of knowing a man who claims to love you can still put you in the ground.

I am blessed to know a different man now, a husband that cherishes and champions me. He is a man who makes promises and keeps them, a man who magnifies all those special, little moments in life that once eluded me. He has taught me that men can be passionate without all the darkness and the violence. Through him, I have learned that men can live and love without the chains of addiction and rage binding them to their demons. Most of all, my husband has taught me that hope lives inside even the very wounded and that with consistency, with commitment and the smallest, simplest loving gestures, it can grow and become the foundation of a life worth living.

Monday, January 29, 2018

Age 3 in Retrospect

Occasionally I make it a habit to clear out my writing folder on my desktop, discarding pieces or re-organizing them into my writing portfolio if they have some legs. Sometimes I find a piece or two that never made it to a formal blog – these are usually rambling, micro observations on my life at a point in time.  Today I found this one…obviously written at the height of epic year long struggle with my then three year old Jaden, and it gave me the opportunity to look back.  This was the year I decided, simultaneously, that my daughter was a force of nature and that I was destined to be a one-child mommy.  By far, age 3 was the roughest year to date – but one that, even dominated by struggles and challenges, provided me those amazing moments of serenity, grace and beauty that come with raising a child. I remain, humbled and grateful by the amazing blessing that is my daughter.   

Most mornings with my three year old are dominated by defiant stances in pink polka-dotted tights, barely eaten breakfasts and dramatic screams during hair-combing and styling sessions.  Most mornings my little girl wakes with only one true desire…to challenge me at every turn. I battle over clothes, shoes, what can and can’t accompany her to school.  She makes demands and launches sabotage attacks to delay our departure while I anxiously watch the clock.  Somehow we manage to stubble out the door, both of us a little worse for wear than we should be.  Most mornings.

Oh… but then there comes that rare, blue moon of a morning where every moment seems as saturated by joy and mirth as any before.  Jaden wakes up with smiles and kisses.  She makes her own way to the potty. She does not throw open my shower door but just waves at me through the glass, a blurry, happy vision in pink princess pajamas.  She helps me feed the dogs. She cleans up her books and toys, before I trip over them.  She gladly accepts whatever outfit I have and dresses quickly instead of diving back beneath the covers to avoid me. She leans lovingly against me as I slip on her shoes. She even takes her drink cup downstairs and puts it in the sink for me.  I make breakfast and she eats it.  We sit side by side, munching and talking contentedly.  

Friday, January 19, 2018

Those Seismic Shifts and the Theraputic Properties of Electronic Ink

This quote, from one of my favorite writers, brings me particular comfort today - a day when I feel out of sorts, like a ship that has suddenly broke from its mooring in an increasingly agitated sea.

I have always found my balance through writing. It has brought me closure and peace more readily than any hour spent on a therapist couch. Sometimes I feel like I have a nest of bees inside, an angry buzzing colony of secrets and the only thing that brings me serenity is to write. I have often used electronic ink to battle back my anxiety and plaguing doubts. There are things however, that I can not put to paper and because I can not, I carry them with me always. Grief, guilt, anger, shame...these things all bare a particular weight in one's heart. Still, I do the best I can, even on those days when I feel the shifting seismic plates of fate beneath my feet.

Wednesday, December 13, 2017

The Irreplaceable Truth

Once upon a time I wandered a bit farther than I should have from my hotel in Bogota, Colombia and found myself in a tiny makeshift shop of an old woman who worked with clay. 

I was instantly enchanted by her creations, the intricate details of her tiny donkeys and saints scattered across the folding table.  The woman looked to be in her nineties, her fingers were terribly snarled and crooked with age.  In my tentative Spanish I asked her if she made them all, gesturing to the figures strew about her.  She nodded vigorously, then as if to prove it, she produced a tiny burro from her pocket.  I could see the clay was still damp and dark. She began to carve and smooth it, holding it up to show me how she worked the clay with one of her thumbnails.  She watched me looking over her wares as I tried to decide what I should take, calculating how many of the delicate pieces I could realistically cart back safety.   

I had a tiny donkey in each hand when I noticed the nativity behind her.  I was immediately struck by the serene expressions on the faces of Mary and Joseph and on the tiny baby Jesus in his crib of straw. It was rustically beautiful.  The lines of Mary’s flowing robes and the magical tilt of her face were peaceful and perfectly wrought. In her sweet face one could see all the wonder and mystery of her faith.  The touches of white paint on the trim of her hood and the delicate features of her infant were almost magical in their artistry. It was at once both simple and intricate. This nativity had been clearly made, not just by an artist, but by a woman of deep faith and love.  It moved me, touched something in spiritual inside me.  

I put down the donkeys and pointed to the nativity. The woman broke into toothy smile. Without thinking about how I would manage to get such a fragile thing home in one piece, I handed her a twenty dollar bill – almost twice the price she had told me.  She produced a roll of bubble wrap and some crumpled newspaper and proceeded to wrap each of the figures with deliberate care.
My holy family made it home with me unscathed. Every year since, I have gently unwrapped it and set it out during the Christmas season in a place of honor. Over the years, edges have chipped and some clay has crumbled in places.  I am dismayed each year to find more clay dust in the wrappings whenever I unpack the figures.  I am the only one who handles it and each year I try my very best to minimize any damage. It has become one of my most treasured heirlooms. It is one of the only things I own that is truly irreplaceable. That is why when I came home that first afternoon and saw the anguish on my mother-in-law’s sweet face, I knew. I knew she had broken something. As much as I silently prayed it wasn’t my beautiful nativity, in my broken heart I knew it was.  

She had accidently bumped the table and sent Joseph tumbling to the floor.  He had been efficiently decapitated, the clay fragments turning to dust on the hardwood floor.  She was devastated, asking me over and over if it had been expensive. I assured it that it hadn’t been valuable, and it hadn’t been, at least not in the monetary sense.  My daughter’s eyes were like saucers having learned from a very early age that my nativity was never to be touched.  She reached for Joseph’s tiny clay head, visibly preparing for the rage she expected was coming. I looked at my mother-in-law in tears and took one very long deep breathe before dismissing her apologies and telling her reassuringly that it was “no problem Mom.”   

After, I fled to the driveway to shed my private tears and call my husband. 

He listened, understanding at once the gravity of it all. I believe he must have instantly began combing the internet looking for a replacement sending me pic after pic of nativities that were nothing at all like mine. I told him that was pointless. I knew would never find another like it.  I told him how awful she felt. We agreed that he would not to say anything more. The damage was done, it had been an accident and there was no sense in making her feel any worse.  I reasoned that at least I still had my beautiful Mary and baby Jesus was still safely stowed away until Christmas Eve.  I admitted that we could probably try to reattach Joseph’s head, sans his neck of course, and conceded that perhaps no one would notice his missing hands or nose in dim light.  I reasoned, I reassured, I conceded…and I cried. 

 Standing in the driveway in the bitter cold, tears running down my face, I managed to find a surprising element of humor in the event. Suddenly laughing, I told him that how nativity had survived the trek home from South America, three moves, 14 years of being packed and unpacked, life with two dogs and a toddler and yet it could not make it through the first 24 hours of his mother’s visit. If that wasn’t ironic, I didn’t know what was. The laughter made my heart hurt less as laughter often does. 

By the time I went back inside, my mother-in-law and I had both recovered from our grief. I thought the most important thing was that my daughter had her grandmother here for the holidays. I thought about how much that meant and how much more meaningful that was than any Christmas decoration, regardless of how much it might have meant to me.  

I looked over to the solitary Mary in her corner and saw that the soft glow of the Christmas lights were casting bands of light and shadow over her serene features.  She looked as peaceful as always. 

I love my mother-in-law. Sometimes she is a virtual tornado that knows no bounds…but…I love her.  I love that she loves me and my daughter with the same fierceness that she loves her own children.  She treats my daughter like the treasure she is and lives every moment of her life to better the lives of her children and grandchildren and asks nothing in return.  I am completely and utterly certain this will not be the last thing she breaks, but regardless,  I am blessed to call her mother and to share my home and life with her. I welcome the peace of forgiveness and the humility of realizing that in the end, things are still just things.  It is our people and our moments with them that are irreplaceable.