El Mejor Regalo

Foto de Clark & Company

Fueron cinco días antes de Navidad

Y en toda la casa,

Nuestros tres gatos estaban dispersos, cazando un ratón de catnip.

Corbin persiguió a sus hermanas lejos y cerca,

Sin saber que en unos días

PATAS SANDY

Pronto estaría aquí!

Sus medias estaban colgadas en algún lugar alto de una pared,

¡Y para evitar las cuentas no deseadas del veterinario, no tenemos ningún árbol en absoluto!

Como me siento con mi pluma tratando de escribir, no una galleta se hornea ni se envuelven envueltos,

Mientras que las visiones del sueño acenan, “Ven acá un sueño, toma una siesta!”

Entonces, de repente, desde el segundo piso, se levantó tal alarido,

¡Yo quería levantarme, pero no tenía energía para ver qué era el asunto!

Para entre el tiempo frío y la actividad adicional de la alegría del día de fiesta,

Un Fibromyalgia Flare estaba muy cerca!

“Hay cosas que hacer, la Navidad estará aquí en ningún momento!”,

Me levanto de mi silla con un gemido y un gemido,

¡En Corbin, en Cleo, en Lady Jade!

Hay cajas para envolver, las comidas deben hacerse!

¡Vaya la fatiga, vaya Cerebro Mushy, POR FAVOR PARE EL DOLOR!

¡Los invitados están pronto para llamar, ahora se alejan, se alejan, DASH AWAY ALL! “

Así comienza otra fiesta con Dolor Crónico y Fibromialgia. Mientras me siento en medio de montones de papel de envolver, telas de colores y arcos, me pregunté cómo en el mundo iba a estar presente para todas las próximas festividades. Era justo entonces que recibí la foto de arriba de mi hermano Rick, un Santa de carne y hueso, que me ayudó a entender que los mejores regalos que podemos dar no vienen envueltos en paquetes bonitos. Su presencia junto a la cama de un paciente en el piso de cáncer pediátrico me recordó que hay muchos que sufren de enfermedades crónicas que pueden no ser capaces de asistir a fiestas o incluso ser el hogar de regalos abiertos apilados bajo un árbol bellamente decorado. A través de su amor y compasión Rick me demostró vívidamente que el mejor regalo que tengo que dar es el don de mí mismo.

Después de muchas lágrimas y mucha contemplación, les presento las siguientes estrategias que me parecieron que funcionarán para mí, y comparto la esperanza de que quizá otros puedan recoger algunas cosas útiles para futuras celebraciones, ya que en este sexto día de 2017, Rápido lejos el viejo año ha pasado ‘, fa fa la la la la, la la LA!

Estoy eligiendo estar PRESENTE en el momento. En un día y la edad cuando la tecnología nos permite vivir en vivo, video chat y enviar fotos de todo al toque de un dedo, estoy eligiendo para disfrutar el tiempo que tenemos con la familia y amigos, así que no pierdas un momento mientras intenta Para capturarlo.

Me permitiré PRESENTAR a otros la oportunidad de ayudarme. No soy la Mujer Maravilla o incluso un facsímil razonable de ello, a pesar de todas mis piezas Cyborg y partes. Soy un mero mortal con dolor crónico y no es razonable para mí esperar que yo pueda hacer todo yo mismo. Yo pediré humildemente, y recibiré ayuda de otros para que yo pueda disfrutar más plenamente de las celebraciones a mano.

Voy a ser UNA PRESENCIA en la habitación. No soy muy bueno acerca de estar sentado y participar en la conversación social. No es que me sienta incómodo en una multitud o se comunique con otros, es que me siento incómodo sentado durante largos períodos de tiempo; Y la razón, si necesito hacer estallar para arriba debido a una articulación del dolor, yo podría también hacer algo mientras que estoy para arriba. En retrospectiva, he encontrado esto muy grosero a nuestros huéspedes que vinieron a visitar con nosotros, no sólo Tom.

Acepto que en mi PRESENTE FORMA, hay mucho sobre la vida que está fuera de mi control. Sin embargo, hay; Algunas cosas que puedo controlar, como la cantidad de fatiga y estrés que experimento. Amigos; Es fácil quedar atrapado en el merchandising de ocasiones especiales, gastando tiempo y energía preciosa para encontrar ese regalo perfecto y / o crear una comida deliciosa. He encontrado una manera de equilibrar mejor mi descanso y actividad es mediante la compra de regalos especiales durante todo el año en lugar de en uno o dos días largos y agotadores. También he encontrado útil para preparar platos o productos horneados antes de las celebraciones y congelarlos. Por último, y lo más difícil para mí para aceptar, es el intercambio o renuncia (GASP!) El trabajo de acogida. Sé que el comercio en mi delantal de una invitación sería el aliviador de la tensión definitiva y el tiempo libre para mí para ayudar a mi hermano, Santa, repartir regalos!

¿Alguna vez pensó en darle el regalo a otros? Hay muchas organizaciones como la que mi hermano, Santa, ofrece su tiempo. Hope Matters se encuentra en Fort Walton Beach, FL y trabaja para “crear un cambio de paradigma en la forma en que niños y adultos experimentan viajes dolorosos”. * Si se trata de cáncer, Alzheimer, dolor crónico u otras enfermedades crónicas y debilitantes, la gente necesita el regalo De su presencia en sus vidas. ¿No estás seguro por dónde empezar? Tome un paso en la dirección correcta, póngase en contacto con su cámara de comercio local o echa un vistazo a la búsqueda de voluntarios ubicada en: https://www.volunteermatch.org/search

* Maryann Makekau, Hope Matters

The Greatest Gift

photo by Clark & Company

 

It was five days before Christmas

And all through the house,

Our three cats were scattered, hunting a catnip mouse.

Corbin chased his sisters far and near,

Unaware that in a few days

SANDY PAWS

Would soon be here!

Their stockings were hung somewhere high on a wall,

And to avoid unwanted vet bills, we have no tree at all!

As I sit with my pen trying to write, not a cookie is baked nor are presents wrapped,

While visions of sleep beckon, “Come hither sleepy one, take a nap!”

Then suddenly from the second floor there rose such a clatter,

I wanted to rise, but had no energy to see what was the matter!

For between the cold weather and extra activity of holiday cheer,

A Fibromyalgia Flare was quite near!

“There are things to do, Christmas will be here in no time!”,

I rise from my chair with a groan and a whine,

“On Corbin, On Cleo, On Lady Jade!

There are boxes to wrap, meals need to be made!

Go Fatigue, Go Mushy Brain, PLEASE STOP PAIN!

Guests are soon to call, now dash away, dash away, DASH AWAY ALL!”

            So begins another holiday with Chronic Pain and Fibromyalgia. As I sit amid  mounds of wrapping paper, colored tissue and bows, I wondered how in the world I was going to remain present for all the upcoming festivities. It was just about then that I received the above photo from my brother Rick, a flesh and blood Santa, who helped me to understand that the best gifts we can give do not come wrapped in pretty packages. His presence beside the bed of a patient on the pediatric cancer floor reminded me that there are many suffering from chronic illnesses that may not be able to attend holiday parties or even be home to open gifts piled under a beautifully decorated tree. Through his love and compassion Rick demonstrated vividly to me,  that the best gift I have to give, is the gift of myself.

After many tears and much contemplation, I present to you the following strategies that I felt would work for me, and I share in the hopes that perhaps others may glean some helpful tidbits for future celebrations, seeing that on this sixth day of 2017, ‘fast away the old year has passed’, fa la la la la, la la LA!

I am choosing to BE PRESENT in the moment. In a day and age when technology enables us to live stream, video chat and send photos of everything at the swipe of a finger, I am choosing to enjoy the time we have with family and friends so I don’t miss a moment while trying to capture it.

I am going to be A PRESENCE in the room. I am not very good about sitting still and participating in social conversation. It’s not that I am uncomfortable in a crowd or communicating with others, it’s that I am uncomfortable sitting for long periods of time; and I reason, if I need to pop up because of a joint of pain, I might as well do something while I’m up. In retrospect, I have found this to be very rude to our guests who came to visit with US, not just Tom.

I will allow myself TO PRESENT to others the opportunity to help me. I’m not Wonder Woman or even a reasonable facsimile thereof, despite all of my Cyborg pieces and  parts. I am a mere mortal with chronic pain and it is unreasonable for me to expect that I can do everything myself. I will humbly ask for, and receive assistance from others so that I can more fully enjoy the celebrations at hand.

I will accept that in my PRESENT FORM, there is much about life that is out of my control. There are however; some things that I can control, like the amount of fatigue and stress I experience. Friends; it’s easy to get caught up in the merchandising of special occasions, spending time and precious energy to find that perfect gift and/or create a delicious meal. I have found one way to better balance my rest and activity is by shopping for special gifts throughout the year instead of in one or two long and exhausting days. I’ve also found it helpful to prepare dishes or baked goods prior to celebrations and freeze them. Lastly, and the most difficult thing for me to accept, is the sharing of or relinquishing (GASP!) the job of host. I know that trading in my apron for an invitation would be the ultimate stress reliever and free up time for me to help my brother, Santa, hand out presents!

Ever considered giving the gift your time to others?  There are many organizations like the one where my brother, Santa, volunteers his time. Hope Matters is located in Fort Walton Beach, FL and works to “create a paradigm shift in the way children and adults experience painful journeys.”* Whether dealing with cancer, Alzheimer’s, chronic pain or other chronic and debilitating illnesses, people need the gift of your presence in their lives. Not sure where to start? Take a step in the right direction, contact your local chamber of commerce or check out Volunteer Search located at: https://www.volunteermatch.org/search

*Maryann Makekau, Hope Matters

Welcome to Hope Matters

 

Harnessing

barb harness

 

Harnessing

For the last few months, Tom and I have been leash training our Maine Coon kitten, Corbindello. We thought this would be an uncomplicated task as his “sisters”, also Maine Coons, had accepted the leash willingly eager to explore the outside world. The girls, Jade and Cleopatra, walk calmly with us; their long, plush tails held high, flicking this way and that in a stately manner like Queen Mothers waving to thier subjects as they stroll down the Abbey along Whitehall.

Alas, this was not our experience with Corbin!

Perhaps it was the hand-me-down PINK harness (how embarrassing), or the fact that we were attempting to restrain him, but our first attempt was a disaster of epic proportions! Before the walk could even begin, there was a struggle as we attempted to put on a harness and attach a leash. Despite our continued reassurance, Corbindello squirmed and wiggled to escape from my lap and the obvious pending doom. He bobbed and weaved his head to prevent having something slipped over it, and gnawed on the strap as we tried to insert a paw into the armhole it made. After several attempts to attach the buckle, we finally heard a ‘CLICK’ and set him on the floor. His first steps in this restraining contraption were much like those of a toddler bundled into a snowsuit; legs splayed wide, he teetered from side to side before defiantly tipping over with a loud and resounding thud. Despite a gentle breeze ruffling his fur and bird chirps beckoning ‘come hither kitty’, it was obvious that Corbin was NOT going willingly through the doorway, so we gently picked him up and placed him on the front porch. Immediately he started to low crawl toward the porch edge, peered over and cautiously slithered down onto the top step. So far so good we thought, and then it began…

… the alligator death roll!

Repeatedly he rolled from back to front, apparently using the stair riser in attempts to rub off the harness and effectively winding himself in the leash which yanked it right out of my hand, freeing him to scoot away down the stairs to the landing! “Smart little guy”, Tom remarked with a laugh, while untangling our furry swamp creature and setting him gently on the next step, where he promptly proceeded to roll again and again desperately trying to release himself from the bindings of his captor until he lay against the concrete exhausted and unable to enjoy even one minute of his time outside.

Every evening, Tom and I would prepare Corbin for a walk and each evening he would immediately launch into the death roll on the stairs in attempts to break free from the evil clutches of the leash, but this only served tangled him further. Time and again, I witnessed this struggle between kitten and leash; and soon I started to see a parallel. Isn’t this how I struggle with chronic pain issues? How often have I found myself fighting against confines that seem to hem me in until I’m worn out, pulling against my Handler’s leash of common sense that prevents me from dashing off to participate in some activity that may cause me to experience more pain?

Gradually, over several months and through patient persistence on everyone’s part, Corbin has become more accepting of his restraints. He is beginning to learn that his harness and leash are actually expanding his horizons and give him the ability to enjoy the out of doors in small increments, safely. Likewise, I have come to understand that by finding a healthy balance between activity and rest, I am able to participate in more of the things I enjoy.

Yesterday, when we prepared Corbin for his outing, he walked calmly to the door and once outside, he stood on the porch proudly sporting his stylish RED harness, sniffing the air, no doubt breathing in all the possibilities waiting to be explored. As we walked down the sidewalk with Corbin, his gorgeous tail is held high, tip gently curled giving it the appearance of a question mark as if it is asking, What can I get into next?;  I whisper a prayer of thanks to my Handler for showing me through our kitten, that I needed to change my attitude about my limitations, and for His patience in helping me to find a way to harness my energies which have allowed me to find harmony so that I can enjoy activity without becoming entangled in pain.

Sharp Words

photo by Alex Aronoff

photo by Alex Aronoff

“ There is one whose rash words are like sword thrusts,

but the tongue of the wise brings healing.”

Proverbs 12: 18

Ginny hugged her books tightly to her chest taking a slight step back with every angry word that Lindsey shot at her.

“You’re a HORRIBLE friend, you take advantage of everyone! You never show up to stuff like you say you will, so no one can count on you. I swear you are SO selfish!”  The angry words were contorting Lindsey’s face as she spat them out.

Ginny cowered under her friend’s verbal beating. “What are you talking about? What did I do?” she whimpered as the accusations come faster and felt like slaps to her face.

“OH MY GOD; you mean YOU DON’T KNOW?” Lindsey leaned in closer; hands on her hips, eyes rolling skyward and hurled her final insult. “I wish I had never met you, I HATE you!”

Lindsey was so close now; Ginny could feel her breathe and the bitterness it propelled, landing the final blow that knocked her off her feet. Everything seemed to move in slow motion. Her heel hit something as she moved away from Lindsey and momentarily Ginny was weightless. Books flew up past her high into the air; she could see puffy white clouds through the tree branches before landing with a thud on the pavement. Pain and fear gripped Ginny’s chest so tightly, she felt like she couldn’t breathe. Somehow, she managed to roll onto her knees and locate all of her belongings. No one stopped to help her pick up the pieces of her life so carelessly scattered about in the dirt or even seemed to care about her as she crawled across the ground.

Ginny scrambled to her feet, and hurried home, hot tears rolling down her cheeks. One block, two blocks, her pace quickened the further she moved from the schoolyard until she was running as fast as she could. By the time she reached her house, she was out of breath and soaked with sweat. Her hands shook so badly, she nearly dropped her keys attempting to unlock the front door. Once inside she made a beeline for the kitchen throwing her schoolbooks in the direction of the dining room table.

When her mother Brenda pulled into the driveway after finishing her shift at the hospital, she noticed that the front door was open. Ginny must have forgotten to close it when she came home from school; I need to remind her about that. This is a safe neighborhood, but you can’t ever be too careful, she thought. As soon as she walked into the foyer, Brenda knew something was wrong. “Ginny?” she called out tentatively, while scanning nearby rooms for her only daughter. The dining room was strewn with dusty books and crinkled notebook paper, through the doorway she could see a kitchen drawer pulled out, its contents in a heap on the counter.

“Oh dear God… ” Brenda’s breathe caught in her throat “… please, no!” she prayed aloud as she barreled through the kitchen knocking over chairs in her haste to get to the stairs. “Ginny? Honey, where are you? Ginny, answer me!” Taking the steps two at a time, Brenda tried to listen for sounds over the beating of her heart echoing in her eardrums. “Sweetie, its ok I’m home now. Say something Ginny.” She rushed down the hall pushing open doors looking for a sign, any sign of Ginny, a rumpled sheet, blood… her limp body.

“Mama?” A faint sob drifted down the corridor. Brenda spun on her heels and headed toward the master bedroom. She bolted in, hitting her hip on the corner of her dresser as she bounded into the master bath. There, wedged between the toilet and the wall Ginny sat, knees pulled up tightly to her chest. Damp hair was matted to the side of her face, mucus dripped from her nose over her lips and down onto her chest. “Oh Ginny, Sweetheart, what happened?” Brenda fell to her knees and scooted close to her daughter. She reached out and wiped away tears that fell in big droplets from swollen eyes to the bathroom floor. One by one, Brenda unfolded Ginny’s arms from her legs and pushed up her sleeves. Thank you God she silently prayed. “Sweetie, where’s the knife?”

Ginny drew in a deep breath, “I didn’t…  do it Mama. I wanted to…  but I didn’t. She’s not… worth it.” She exhaled each statement with deep sobs. Slowly, Ginny reached behind the toilet and pushed a butcher knife across the tile floor and out of the other side.

***

    This isn’t a true story, but it could be and it is loosely based on an actual event. Ginny has Bi-Polar with an Anxiety Disorder. She has a history of cutting and alcohol abuse. She’s not a bad girl, and she’s not crazy. She wasn’t abused or neglected.

Depression, Anxiety, Panic Disorders, Bipolar, PTSD

These are a few of the more than 200 classified forms of mental illnesses. According to statistics, Ginny is one of the 21.4% of youths in the United States aged 13-18 and will become one of the 4.2% of adults that suffer with mental health disorders and the social stigmas attached to them.

Ginny had confided in Lindsey that she had been depressed, something Lindsey understood in a broad sense;  her mother had been depressed after the birth of her little brother Jack. However, what Lindsey didn’t understand is that having Bipolar is a continual battle and just getting through a day is difficult for Ginny!  She tires easily from her medication and all the effort it takes for her to pay attention in class is draining. Imagine how overwhelming it is to have borage of endless thoughts running through your mind, constantly vying for attention. No wonder Ginny doesn’t participate in a lot of extracurricular activities; she wants to, but by the time school is over she’s exhausted!

My guess is that Lindsey didn’t realize that her words caused Ginny physical pain by triggering reactions in the Amygdala (uh-mig-duh-luh), the same region of the brain that is responsible for the ‘fight or flight’ response and our emotions. Ginny is hypersensitive and can often react to negative experiences as if they were actual threats.  The neural circuitry in someone who has Bipolar differs from those without Bipolar and perhaps, if Lindsey knew just how much damage her words did, she would have chosen them a bit more carefully before lashing out.

Statements like: I miss spending time with you; I don’t understand what’s going on, but I care, I’m here for you or I cannot imagine how hard this must be, what can I do to help?, would have gone a long way in helping Ginny, who already feels isolated and different from her peers, to cope.

Mental health issues don’t define Ginny, however, they do alter her perceptions and it may take as many as three positive statements to combat each negative one that she hears. She needs others to be patient and to be frustrated with the disease, not Ginny when she is late again; seems distracted or acts impulsively.

Friends, do you know someone suffering from a mental health issue? Take a step in the right direction, reach out to let them know that they are valuable; use positive and affirming words when speaking to them.  If you see the outward signs of inner pain and turmoil and think that they are in danger of hurting themselves; let them know your concerns, contact their parents, a counselor, or the authorities.

National Suicide Prevention Lifeline

1-800-273-8255

Available 24 Hours a Day

Or Online live chat

http://www.suicidepreventionlifeline.org/

Steppin’ Out

Ok friends, I have a confession:

I love shoes!

High heels, low heels, boots, flats, sling backs, or mules; the style doesn’t matter, and the more colorful or unique the better. My very favorite pair are a circa Leave it to Beaver; June Cleaver reproduction cream colored, satin peep-toed pump! They pair perfectly with blue jeans, skirts, dresses or gowns and they are this girl’s go to accessory.

Alas, after my first back surgery, the doctors told me to get rid of all of my impractical footwear. (GASP!) However, considering impractical a relative term; I surreptitiously declined, putting my entire Imelda Marcos sized collection in the witness relocation program. I also made my husband Tom promise, pinkie swear, that no matter what happened to my ability to ambulate, he’d keep my tootsies shod in Zsa Zsa Gabor style satin slippers! My rationale was that each day I live with things I didn’t choose, so at least allow me to accentuate my feet however I want; because really, even on my worst pain day, cute shoes help put a smile on my face. Some people didn’t understand and questioned my logic. They had a lot to say. Thanks for the

S.U.P.P.O.R.T.

When the physiatrists at John’s Hopkins University Pain Clinic decided to put me on a low dose of Prozac for chronic pain, people told me that they heard this medication makes one go crazy and commit suicide. Thanks, that’s

C.O.M.F.O.R.T.I.N.G.

Fortunate for you dear ones, Prozac did not make me suicidal, it only made me jump out of my knock-off Jimmy Choo’s and lose a lot of weight. Then the aforementioned people accused me of being anorexic. Thanks, that’s

U.P.L.I.F.T.I.N.G.

When the JHU pain clinic decided Methadone was the choice of medications for chronic pain patients like Moi’ who failed to achieve positive results from nearly a dozen other medicinal options, said people asked me if I was a heroin addict. Are you kidding me?

N.O.

People asked me why I changed medications like toilet paper rolls or subjected myself to continued treatments and injections; before I could explain; they would tell me about their cousin’s uncle’s barber’s sister-in-law’s son’s baby-sitter who had that same thing, well, maybe not EXACTLY, the same thing I did but they tried _________ and it worked! Oh, really? Thanks for listening, that’s

E.N.C.O.U.R.A.G.I.N.G.

At this point, some of you may be wondering why I chose to disclose so much personal information to said people. I may have neglected to mention these were family members, friends, folks we attended church with; those people with whom we shared our lives and expressed concern for my health and well-being. I am not ashamed of my conditions or treatments and don’t mind sharing; I want to find a better way to manage pain and this takes time; they call it practicing medicine for a reason. I never thought I’d hear

J.U.D.G.M.E.N.T.

I want you to remember that didn’t choose to have Spina Bifida Occulta, Osteoarthritis, Fibromyalgia or to be in chronic pain. I was born this way; fearfully and wonderfully made! I know that I can never be what everyone expects me to be. I cannot change my structure, my biochemistry or my genetic makeup; I just want to find a way to live in harmony with my

U.N.I.Q.U.E.N.E.S.S.

Dear ones, before you say something in judgment, gossip to others, end a friendship or new relationship because of a diagnosis; please take a few minutes to educate yourself about what your friend or loved one is going through. Perhaps that means searching the World Wide Web for information and making a list of questions to ask them, or maybe you can arrange to go with them to a doctor’s appointment or a therapy session. Trust me, you may not be able to walk in their Steve Madden’s, but taking a step in this direction will not only enlighten you, it will help take a load off their feet!

Fortunate

fortunate

 Hello again friends! I had been working on another, much different blog post for (far too long if you ask Tom),  you but as I sent the following letter to my beloved aunt and uncle regarding another family member, I realized that I needed to share with you the actual letter I e-mailed just this morning as many of you may feel the way my relative does. I have blocked out his name because I did not ask permission to share about him- but feel free to insert any name in place of those X’s, perhaps someone you know who suffers from chronic pain or illness or possibly even YOUR name!

Dear Aunt and Uncle,

I was thinking about what was said about XXXX  hating his pain and as someone who suffers from chronic pain, I wanted to share with you my thoughts.

“XXXX hates his pain, but he is so used it his is not sure he wants to give it up.”

I don’t hate the pain that I have. I don’t like the way it affects my life, and I think of it, and have referred to it quite often, as a bully that pushes me around; but I don’t hate it. When it’s not around (those rare occasions) I feel like something is missing- not that I MISS IT (miss as in long for it like a lost love) but have the feeling of “so something is different- something is off- what is it? OH, NO PAIN- THAT’S what that odd feeling is!” Perhaps that’s what XXXX means when he says, “he’s not willing to give it up”.

I would also like to point out that my pain is VERY unpredictable, and XXXX’s might be too.  I’m often asked by my doctors if it’s worse in the morning, mid-day or evening. I cannot say because there is not a pattern or cycle to it. No apparent rhyme or reason that I can pinpoint for some of its “attacks”. I will cry out involuntarily( and embarrassingly I might add) as I get a shot of pain and call FOUL!  saying aloud to no one I particular- “that was unprovoked and unfair!!” As odd as it sounds to people who do not experience chronic pain, I am more comfortable with the consistency of it, rather than not knowing when it will strike.  Maybe XXXX is experiencing this kind of “comfort” in pain. Seeing as pain comes in many forms, dull-achy, sharp and shooting, throbbing, and numbness to name just a few, I never know at any given time, what to expect. Sometimes I liken living with pain to the 1960’s movie the Pink Panther. The French detective Clouseau (Petter Sellers) lives with his manservant Cato (Kato) Fong. Cato has been instructed by Clouseau to attack him unexpectedly to keep him alert, vigilant and his combat reflexes sharp. At times, my pain is like Cato, lying in wait and ready to strike at any moment, when I least expect it. Given a choice, as odd as it may sound, I prefer the constant nag of dull pain to the unexpected sharp (Cato like) stabbing pain. Maybe XXXX feels the same way?

I have asked (many,many) times for it (pain) to be removed from my life, but to date, it has not been allowed, so I ask God for the grace to accept it. I ask Him what He wants me to do with the affects of pain, and thank Him for opportunities to share the AMAZING things He has done in my life as a result of the pain, and in spite of the pain.

I thank Him for the the grace to deal with pain.
I thank Him for the humility He has taught me as a result of living in chronic pain.
I thank Him for the compassion for others He has instilled in me because of pain.
I thank Him for the understanding of His amazing creation- the human body- that He has given me as a result of the many doctor’s visits, procedures and surgeries I’ve had.
I thank Him for the knowledge of the human body He has given to the talented doctors who care for me and for the medical technology that is available at this time in our world, to help me achieve a level of comfort that makes my life- well- livable!
I thank Him for health insurance to cover the costs of the many surgeries, procedures and medications I have needed in my lifetime.
I thank Him for giving me the eyes to see another side of life that so many are unable to see because they are so busy and preoccupied with life.
I thank Him for teaching me not to take ANYTHING for granted through this life of chronic pain and illness. Each day, each step, each breath… I have the unique opportunity to share with others what a GIFT these things are that most of us take for granted.

I have met MANY people with chronic pain and illness who are MISERABLE! They can find NO VALUE in having pain or illness, in going on (living) each day. They are depressed, joyless, full of blame and miserable to be around. God gave me the eyes to see this in others and showed me that I had a choice. I could choose to be miserable, or I could choose to live in joy despite the pain.

I choose joy!

I guess, in a nut shell, what I am saying is that I can’t hate my pain.  Could I have learned these lessons other ways- I’m sure! Can God heal me- most certainly! Is He using me through these trials- I like to believe that He is.

So, despite experiencing pain to some degree, in some part of my body, every day; I can say without hesitation- I do NOT hate the pain I feel- I thank God for it!

Those are my thoughts on pain and I pray that XXXX would be able to move through HATE to a less destructive understanding with the pain in his life.

All my love,
Janet

In closing Dear Ones, I encourage you to take a step in the right direction, find great pleasure in doing what pain says you can’t- give thanks in all things, even pain!

Super Sleepy

lois lane

I slipped into the dimly lit café and cast a furtive glance across the room.There was a couple huddled together in a corner booth and a man seated at a table for one was peering over the top of his newspaper. A flash of lightening punctuated the final chord of a song emanating from hidden speakers and illuminated the small shop like the morning sun. I locked eyes with the barista who nodded toward the back before disappearing behind a curtain. I had a sinking feeling it was going to be a long night.I found my compadres seated in the back of the café and plopped into a chair Batman had kicked out.

“You’re late.” He stated gruffly.

“It’s about to rain.” I pointed out the obvious. “Mother Nature is starting her crap again.”

Spiderman stared blankly and Superman shook his head while slurping a Cappuccino.

“Course of action” Batman barked. Don’t take it personally I thought to myself, his arthritis must be flared up again.

So began our super secret meeting to discuss how we could combine forces to take on the elusive villains of P.A.I.N. that wreak havoc on innocent bodies: particularly, that Femme Fatale Fatigue, Mother Nature, her lecherous henchmen The Low Pressure Systems, and the ever-elusive Inflammation.

“What’s your super power?” Spiderman squeaked. For some reason I thought his voice would be deeper.

“CBT” I remarked confidently.

“Sounds like a disease.” Batman remarked stoically, as always.

“Is that like x-ray vision?” Superman asked hopefully, wiping a foam mustache from his upper lip with the back of his hand. Next time ask for no whip, no foam I mused.

“Yes, but not like TSA sees bones and bra hooks, it’s a cognitive process.” I quipped, but no one seemed to see the humor in my comment.

“CBT sounds like a virus, is it injected? My Spidey senses are staring to tingle! How do you spread it?” The webbed wonder blurted out.

“Did you order decaf Peter? You know how caffeine affects you after 3pm.” Spidey lowered his head; busted!

“Aww, come on guys! You didn’t read my Trans-Human resume did you. It was all in there; my strengths and weaknesses, descriptions, flow-charts and diagrams providing the quantitative measurements of pain, distribution and location. I even enclosed a urine sample for drug screening.”

“Whoa, whoa; you are talking WAY over our heads.” Superman slurped a fresh Grande Mocha Latte. “You have a weakness, really? You look strong and fit!”

“Yup! MRI machines.” I sighed. “I can’t get within 50 feet of one.”

“What happens?” I little voice called out from above us. Spiderman was doing aerial yoga from a web he had attached to the ceiling. OK, I know who his nemesis is!

“It sucks out all my Cyborg parts. Do you like that better than traditional yoga Peter?” I should have added baby-sitting to my resume.

“Oh Bruce, I almost forgot, here is that camphor you wanted.” I tossed the cream across the table.

“No given names.” He growled as he slid the tube into the empty slot in his utility belt. Boy, he is really feeling the weather!

“Ok guys, huddle in we need to address that age old question; How do you fight what you cannot see?”

“Oo, Oo, x-ray vision.” Superman was waving his hand high over his head.

“Shush!” the caped crusader demanded while elbowing the reporter turned crime fighter.

I rose from my chair and leaned over the table lowering my voice.

“Are you ok?” The barista whispered and leaned in, his head close to mine.

“We’re fine, but do me a favor. Don’t give the guy in the mask, the one swinging from the ceiling fan, any more caffeine ok?”

“What?” The barista seemed very confused. “Honey, do you need help getting back into bed?”

WHAT!! Honey? Boy the nerve of some people!

I looked up to see my husband’s puzzled face. “I was dreaming.” I mumbled while climbing back into bed. “There was this café and a secret meeting of super heroes and…” I tried to recall each detail of my nocturnal escapade.

“Why were you leaning over the bed?” Tommy yawned.

“My back hurts; I guess I was subconsciously trying to stretch and ease the pain.”

This has happened to me before, vivid dreams in which my subconscious mind seems to be trying to rationalize the physical pain I am actually experiencing. Oh, I’ve had some strange and unsettling ones; gunshot wounds to the back, being knocked off my bicycle by a runaway dump truck, these are examples of a group of sleep disorders called; Parasomnias.

Categorized by the stage of REM sleep in which they occur, Parasomnias have few, if any specific causes but can be related to neurological conditions such as neuropathy, and spinal cord pathology. These sleep disturbances involve abnormal movements, behavior, emotions, and perceptions. Sleep walking, sleep talking, sleep terrors and sleep paralysis are a few of the more commonly experienced Parasomnias.

According to the American Academy of Sleep Medicine, many people who suffer with Parasomnias see their symptoms improve by making simple changes to their daily routines.  By adopting a relaxing evening routine such as a warm shower, deep breathing, prayer or meditation and keeping a consistent bedtime, they are able to improve their sleep patterns. Regular exercise has many health benefits and studies show it can improve the quality of sleep; however, many of us suffering from chronic pain and illness have difficulty following an exercise regime. Talk to your health care professional about incorporating low impact activities like swimming, yoga or Tai Chi to your schedule, but be sure to finish your workout at least 3 hours prior to retiring for bed. Additionally, avoiding foods and beverages, as well as medications, that contain caffeine and retreating to a cool, dark and quiet bedroom may help increase the chances of getting the full eight hours of sleep that the AASM recommends.

My super hero friends and I may not have been able to solve the mystery of how to battle what you cannot see that dark and stormy night, but by taking a step in the right direction and making a few changes, I was able to defeat the fearsome and ever-glassy eyed Insomniac!

Be Right Back

michelle nicole photography

michelle nicole photography

Hello Friends!

 I wanted to take a moment to thank you for your patience and understanding during my brief hiatus from writing.

The following series of events over the last two months precipitated a Fribromyalgia Flare and unfortunately brain fog which inhibited my ability to produce supportive and encouraging posts:

~my husband’s surgery

~travel to my brother’s home

~the death of my sister-in-law, who suffered from early onset Alzheimer’s

~surgery to replace and reposition my spinal cord stimulator battery (IPG)

I am currently doing research and will resume posting in August.

Thank you again for following and supporting

The Write Direction

my love to you all…

Janet

Monkey Business

michelle nicole photography

michelle nicole photography

 

Did you ever have the feeling that someone was following you? That uneasy awareness that there is someone lurking in the shadows, just out of eye sight, watching and waiting for just the right moment to catch you off guard and POUNCE on you.

That’s what it’s like living with an Invisible Illness.

Each day you go about your usual mundane tasks and occasional small errands, like picking up one of the many prescriptions you take each month necessary to maintain some semblance of normalcy; when, without warning or any provocation, you take a step to leave the pharmacy and your ubiquitous stalker grabs hold, incapacitating you with searing pain. This morning you were anxious about your pet’s surgery and in addition, some man scared you silly on the way to the veterinarian. Stress makes you tense, which increases pain levels. Your knees buckle and you grab at the first thing you see to support you. The sudden jolt of pain makes you cry out involuntarily; you are embarrassed and look around to see if anyone noticed. Your legs feel so heavy, you almost expect to see a 300-pound gorilla wrapped around your ankles, but there is just a man standing in front of you. He looks familiar, but not ape-like. He asks if you are ok, you lie and say Yes, I’m fine; it’s easier than trying to explain what just happened to your body. He asks again, you lie again because it takes far less energy; energy that is being depleted every second that you try to stand there. His platitudes seem genuine enough but something feels off.. then you realize… it’s the man from earlier! You don’t want his help, you wonder if he realizes this is a direct result of the stress he has caused as you clutch the outside of the building trying to stay vertical, trying to focus on getting to the car and making the trek back to your house three l. o. n. g. blocks away.

That’s what it’s like living with Chronic Pain.

At home, you head to the recliner and grab a soft blanket to soothe the dysesthesia in your legs and feet; this abnormal sensation to touch spells pending doom for you. The stressful situation earlier in the day triggered a flare. You don’t know how long this flare will last, or what other symptoms you should expect. It’s like spinning a prize wheel at a carnival; “Step right up, step right up!” The midway barker calls, “Spin the wheel, round and round it goes… where it stops, no one knows!” Will you have the all-over, flu-like body aches in addition to the chronic pain resulting from 10 surgeries to stabilize your spine, will fatigue make you need naps that could last 3 hours, will ‘brain fog’ consume your thoughts and words, or perhaps you will hit it big and receive all the lovely symptoms on the wheel.

That’s what it’s like living with Fibromyalgia.

 You are FREEZING; even though you are all snuggled with your soft blanket in the recliner by the fire, you can’t seem to get warm. It’s April, so you have stopped taking the circulation medication per your doctor because it’s supposed to be warm outside. You get up to get socks and a sweater, but when you stand, your feet are all tingly and it hurts to walk on them. Your fingertips have splotches of white on them because circulation to them is being restricted by spasms in your blood vessels. Vasospams are caused by stress, like what you experienced earlier.

That’s what it’s like living with Reynaud’s Phenomenon

Your husband comes home with a bouquet of flowers and a card, gifts to brighten your difficult day. When you hold the bouquet, your hand aches and you need to ask for help cutting the stems. Painful knuckle joints make it impossible to use the scissors. You hope you will be able to cut your food tonight; it’s embarrassing asking for help to use utensils, especially in public. It’s going to rain, you are sure of it; your hands, knees and feet always swell and ache when the atmospheric pressure changes. You hope that you don’t start to feel the effects of the weather in your cervical, thoracic, and lumbar spine or in your pelvis; all which have been fused.

That’s what it’s like living with Osteoarthritis.

                 You are scanning social media, after finishing the wonderful meal your husband made; you are still in the recliner, you even had dinner there, as you often do. You see a post worth sharing…

Judging a person does not define who they are… it defines who you are.

 

 

Letting Go

 

michelle nicole photography

michelle nicole photography

 

My tidy little plans to regain some semblance of normalcy after returning from vacation went out the window with the unrealistic, get-it-all-done-in-a-day  TA-DO list I had prepared, because, among the souvenirs Tom and I brought home were; GERMS! Nasty ones that took out our travel companions and Tom first, then set their sights on me; choosing to attack my sinus passages, and then throat, holding my vocal cords hostage. Their coup de grace, a Fibromyalgia flare; which once in place, drained every ounce of energy left in me as well as my ability to think beyond the next dose of medication.

I had lost all control!

I needed to make meals and take care of the cats; there was laundry to wash, photos to download and an unfinished manuscript calling to me. My TA-DO list was growing larger than my Christmas wish list, yet no amount of Vick’s Vapor rub or caffeine could motivate me. How could I allow my neatly ordered days to slip by one after another? I had missed birthdays and anniversaries of loved ones…

I had… things to do!

I was quickly trading my normal laissez-faire attitude for a very destructive I WILL get this done come hell or high water, one. While I admit that I tend to over strategize my days, in my defense, it’s because chronic pain and Fibromyalgia makes them unpredictable. On “good” days, I try very hard to accomplish everything on my list, which usually triggers “bad days”, a cycle that seems to repeat, for some reason, in perpetuity.

I need to break this cycle, but I’m not sure how.

As I lay snuggled between soft, warm blankets, steamy air emanating from the vaporizer beside the bed, I tried to think, albeit brief, optimistically. This is the first time I have been sick in about a year, what could I possibly learn from this? I reached through the steam for a tissue, burning my hand. What’s the benefit of snot anyway; I may never understand it’s purpose, especially the copious amounts which my body was producing! Were there any benefits of not being in control? Then as I adjusted the pillows, which propped my body at a 90* angle to ensure breathing and continued life, it came to me…

… the benefit of losing control was losing control!

Did I just hear the Alleluia Chorus? Had God sent a choir of angels to herald in an EPIC revelation? I drug myself out of bed in search of a pen and scrap of paper to make notes, lest the dreaded fibro brain-fog whisk it away. I had always viewed losing control in a negative way, but now, thanks to my heavenly harbingers; I realize that, in a positive respect, by losing control:

I could let go of the fear that things will not get done, or be done, without my input.

I am able to release myself from the responsibility of chronic illness; but not my attitude toward it.

I am free of guilt for not accomplishing everything I had intended and my unrealistic expectations.

I can ask for, and accept help without feeling vulnerable.

I can delegate tasks on my TA-DO list and use the reserve of energy to take care of me!

I opened the bedroom door to find that my heavenly visitation had actually been a trio of felines caterwauling for Cat Chow from the hallway. They escorted me down the stairs and to the pantry so I wouldn’t lose my way. They shouldn’t have worried though, the only thing I lost, was control!