Rare Disease Day 2016, More Than Just Cryoglobulinemia

Today is Rare Disease Awareness Day and since I have a rare disease called Cryoglobulinemia, I have a special interest in February 29th, 2016. It’s true that my particular autoimmune disease is very rare but when I place it within the greater context of the many rare autoimmune diseases, I see myself as one among many suffering from a poorly understood disease. It is estimated that 23,000,000 people in the U.S. have an autoimmune disorder; diseases that bear the common characteristic of the body attacking itself. Within my family, friends, and personal acquaintances, I know and love others who suffer from: Multiple Sclerosis, Sjogrens, Scleroderma, Interstitial Cystitis, Rheumatoid Arthritis, Polymyalgia Rheumatica, Excema, and one friend who I suspect has an autoimmune disorder that has remained undiagnosed for years. In fact, I know more people who suffer from mild to crippling autoimmune diseases than any other disease. If I add autoimmune disease to other rare diseases it soon becomes clear that Rare Disease Awareness Day is about everyone. No one is immune to falling victim to a rare disease and facing the accompanying vacuum of knowledge with subsequent, lack of effective treatment.

On this special day set aside to think about people who suffer from rare diseases, my hope is for those of us who live under the chronic weight of diseases with strange sounding names to be viewed as less uncommon. I hope we will be seen in our true light as part of the greater whole and that which inflicts us now could at any time, inflict you or someone you love tomorrow. Awareness is the beginning in the fight to end the ignorance surrounding rare diseases that will lead to research, treatment, and cures.

Knowing that you have taken the time to read this article gives this Cryoglobulinemic woman new hope. Thank you for taking the time to consider the meaning behind Rare Disease Awareness Day 2016.

 

Season’s Romance

A rosy morning sunrise prances…

(In a delicate sunbeam ballet)

Upon snowy February branches…

A frosty-day-sparkle-melt-away!

Spring warmth on winter dances;

Quick encounter a seasonal play!

Yearly rendezvous brief romances…

Warmth of life leads cold astray!

Icy dissolve nurture life’s chances,

Green rises to overthrow all gray!

Glitter-to-glint magnifies enhances,

Hope- for-spring-time-dream-day!

Slow-waltz Winter’s Spring princess…

Youthful rosy blush heats icy-day!

Old man Winter lost! Love entrances…

Summer entices Spring’s love away!

Summer falls to Autumn enchantress!

Bad-boy Winter flirt Autumn is prey…

Scandalous affairs seasonal romances!

Begin every year in a sunlit ice ballet;

Icy rose morning sunlight take chances…

Season’s romance spectacular display!

 

 

 

 

The Recluse (Part VI)

The loud slam of Maria Hernandez’s car door brings Estelle bolting up from a deep sleep. Suddenly alert, she responds as if to a gun blast and is instantly, awake and vigilant. As she realizes the more common reality of what she heard, she gets up to look out the window and sure enough, there is Mrs. Hernandez walking from her car toward her front door. Estelle pulls the blind down and then looks into the mirror over her dressing table. She brushes her hair smooth, wipes her face with a disposable cloth, and then reaches for her favorite sweater. It’s not cold but wrapping it around her gives her a feeling of armored protection as she prepares to confront her neighbors about the behavior of their child. Confrontation is no easy task for a person who has done everything in their power to avoid contact with others and in this moment of truth, Estelle is facing an epic challenge. She feels she must do this in order, to put her life back into a manageable context.

Without really knowing how she arrived, Estelle stands outside the Hernandez home, clutching her sweater around her in a stabilizing hug. She waits for a response to the door bell and then upon becoming impatient, knocks. She feels the tension brought on by the slow answer pushing against her urge to flee. Just as she is about to give in to the second emotional prompt, the door opens. Estelle finds herself looking downward as the small form of Maria Hernandez fills the doorway. There her eyes meet the kindest, warmest eyes she’s ever seen. All of her angry resolve melts in those soft, hazel-grey globes. “Hello! May I help you?” asks Maria. “Oh…ugh…yes, I think so. I’m your next door neighbor. My name is Estelle Williams and I was wondering if I could speak with you about a problem I’m having.” Estelle sighs with relief in the success of being able to express a cohesive thought. She pulls her sweater tighter as she waits for what might come next. Maria holds out her hand and warmly invites Estelle inside, “Why of course! I’m so glad to finally, meet you. My name is Maria. Alisha has told me about you. Did you enjoy the Bisquochitos? Please, come in and have a seat.” Estelle enters the Hernandez home which is a cookie cutter image of her own but so different. The house is clean but the furnishings are merely practical and a mix of old with new. Estelle finds an over-sized chair near the back wall, facing the entrance and timidly, sits down. “Yes, the cookies were nice but I’m having some problems with your little girl and that’s why I’m here.” The soft expression on Maria’s face turns to concern and consternation, “Oh? I can’t imagine my Alisha causing anyone problems. She’s a good girl and I’ve never heard her say anything unkind about you, Ms. Williams. In fact, she asked to take cookies over to your house because she worries about you being alone.” Estelle thinks about this statement and description of Alisha for a moment then compares it to those manipulative eyes that she’s found spying on her for the last two weeks and has sudden insight into Alisha’s disregard for the personal boundaries of others. “Well…Maria…may I call you, Maria? I do appreciate your daughter’s concern for me but that concern is invading my privacy. For the last two weeks it seems, every time I turn around I find those big, brown eyes of hers spying on me. I must say that she is much too young to be on her own all day. Girls her age need guidance!” There, she said it and the problem is on the table. Then, out of the corner of her eye, she sees the subject of this conversation trying to remain invisible as she peers around the corner from the kitchen. Estelle aims the full force of her green eyes straight at her and Alisha vanishes as silently, as a ghost. “Oh, Ms. Williams…” Maria’s beginning explanation brings Estelle’s attention back on this gentle face. “You may call me, Estelle.” “Estelle…I’m sure Alisha doesn’t mean to invade your privacy but I will talk to her.” Not hearing exactly the response Estelle hopes for she reiterates, “That’s a good beginning Maria but if the little girl is alone with no one to enforce your… conversation, I have no assurance that my boundaries will be respected.” Maria flops down on the sofa and clutches a worn pillow in her lap absent mindedly, pulling the corners. “I don’t like leaving her here all day either. I wanted to put her in some kind of program for the summer but the ones I can afford, she doesn’t like. I gave into her. We’ve just moved and moving is expensive. My husband is starting a new business and I have to work. I’m sorry Alisha is bothering you. I will talk to her but I’m afraid that is the best I can do right now.” Maria doesn’t quite believe her daughter would spy on their neighbor, she doesn’t want to force Alisha into a summer program she doesn’t like, and she down-plays Estelle’s complaint as she feigns concern. Estelle sees the denial and decides to make a brave move in hopes of gaining direct control over the situation. “Well Maria, I do see your point of view. Perhaps, I can offer a solution and since Alisha is so concerned about my state of… loneliness, perhaps she would be willing to help me with a few chores around my home and accept payment in the form of art lessons, with me as her teacher. Perhaps, that would solve many of our problems.”

Alisha being careful to remain out of sight hears this and her heart leaps. She doesn’t like the sound of the word ‘chores’ but wow, what an intro to the inside world of “The Lone Lady”! She decides to make a dramatic entry into the scene playing out in the front room.

Alisha smoothes her ribbons and her summer dress then skips into the living room, “Hello Mamma! I’m glad you’re home! Oh! Ms. Williams! I didn’t know you were here!” She opens her chocolaty eyes wide for their full effect and smiles her most dazzling, people-pleasing smile. Maria’s face lights up as it always does in the presence of her beloved daughter, “Oh, mi linda! Come here and give me my hug.” Alisha folds into her mother’s side on the couch knowing she’s won control no matter what Ms. Williams says. “I’m glad to see you here Ms. Williams. I worry about you all of the time!” Estelle compares the words she hears to the expression in those eyes and knows from long experience the truth doesn’t match Alisha’s intent. She decides to match that intent and replies, “Well Alisha, I’m a grown up and I’m old enough to choose to be alone and manage my behavior. You on the other hand are a child and I believe it is you who shouldn’t be alone all day. I don’t mind being alone but I do think it not right for a girl your age to be left to her own day-after-day. Your mother and I were discussing this and I’ve made her an offer. I do have many chores around my home you could help me with and in exchange for your help, I am willing to give you art lessons. What do you think?” Alisha took the bait and jumped in before her mother had a chance to respond. “Oh yes! Yes, Ms. Williams! Oh Momma, I would love to help out. You know you and Daddy are always telling me how important it is to help others and I would be learning something too! Please Momma say, yes!” Maria’s natural servant’s heart over-rides any logical thought in the situation. She only wants to make everyone feel better so, she follows the inclinations of her heart as she always does when she makes a final decision. “Estelle, are you sure this isn’t too much bother?” “If it were a bother Maria, I wouldn’t offer. I don’t like being spied on and I do need some help with things. I love creativity and I will enjoy sharing what I know with Alisha.” Maria looks into the face she favors above all others and says, “Alisha, mi jita, my precious little girl yes, I think this is a very good idea. If it makes you happy little one, it makes me happy too.” Then she turns toward Estelle whom she already regards as a friend and with loving warmth, accepts her offer with many thanks. The three of them discuss the matter further, set a scheduled time, and agree that the plan they’ve made will begin tomorrow. “Well, I should get back home. I have work to catch up on and I must say Alisha, I don’t want to look up from my desk and find you watching me. If we are going to be friends, you must respect me. Friends don’t spy on friends. I am looking forward to seeing you at nine tomorrow morning. Don’t be late! I’m a busy woman.” Alisha, thinking she’d won a victory and fully confident of her ability to avoid doing any real work, gushes, “Oh, Ms. Williams. I am so happy and I promise not to watch you anymore. I just worry if you’re okay because you are always all by yourself. If I’m with you then I won’t worry!” Estelle knew these words to be a side-step of the real truth but she had no idea of Alisha’s underlying intent. Still, she was satisfied to be back in the driver’s seat of her life and as she turns to walk back across the driveway, feels some relief in having regained some control over her small world. Alisha watches her back feeling smug in her almost magical control over adults and looks forward to finding new clues into the mystery of her strange neighbor. Maria looks on with tender, soft eyes from one to the other, thinking how wonderful they both are and how blessed she is to have each of them in her life. The three of them have no idea of the change the pact they’ve just made is going to bring into their lives.
To be continued.

 

To find links to previous posts in this series, visit my Home Page and go to the drop-down menu, just under the Header, click “The Recluse Series”. Links are posted in ascending order.

Spreading Joy by the Warmth of Appreciation

Wow! I am appreciated by a talented writer whom I greatly, admire. He is artistically gifted, his work is enlightening, and I seldom read anything of his that doesn’t leave me with at least, a chuckle and sometimes, a good, deep belly-laugh. You probably know his work too, his name is Mitch and you’ll find him at http://www.mitchteemley.com. Thank you, Mitch for nominating me for the “Blogger Appreciation Award” and for adding joy to my days.

There are many in my WordPress family of friends who deserve this award. There are so many I would like to nominate but have settled on the short-list below. These names include those of you who nominated me for other awards that I placed on the back-burner and then allowed them to simmer until, all but the memory of your nomination cooked away. However, I appreciate every one of those nominations. You encouraged me by them as you also, encourage me in so many other ways. This list includes those whom I’ve come to know best and I think of you as dear friends. As in life, blogging is relational and this list of names represents relationships that are important to me, along with people deserving of my appreciation. There are others out there that I haven’t listed, whom I love as I adore your work, you know who you are, who really don’t want to bother with awards but know, I appreciate you too.

My nominees are:

Wally Fry, my buddy in Christ who is a uniting force here on WordPress and a friend to all. Find him at http://www.truthinpalmyra.wordpress.com

Slim Jim, my truth honoring, thoughtful friend who has also, given me Pastoral support during a time when I needed it most. Find him at http://www.veritasdomain.wordpress.com.

Jacquelin, my vivacious, energetic friend who stands strong upon her faith and values, while reaching for the stars. Her posts and her comments are a bright spot in my day. Find her at http://www.acookingpotandtwistedtales.com.

Robert at http://www.mygodmymusicmylife.wordpress.com who writes what God lays on his heart, shares wonderful music for all who might wish to here, and I know he always, prays for me.

Patrick Hawthorn at http://www.servinggrace.com, my very spiritual, crazy super-hero, Turkey Buzzard friend, an encourager, a warrior, who really does care about serving God and others.

Miguel, my fellow aging baby boomer who does a very thorough job of exploring the Void we all are apart from the filling of God’s Spirit. My fellow deep thinker at http://www.andnowmiguel.wordpress.com.

Mum C Writes at http://www.amoafowaa.com my little sister in Christ who lives so far away in a land so different from mine but also, has a warm home in my heart. Her poetry beats to the rhythm of Truth’s drum and I am in love with the pictures of Africa and its people that she paints with her powerful words. Someday, I hope to hear her pronounce her name so, I know if I’m saying it right. If not in this world then in the world to come I will know Amoafowaa and I will see and touch her sweet face.

Barb at http://www. bjsscribbles.wordpress.com who hails from a country that I long to visit, which has much in common with my beloved Nuevo Mexico. She has kangaroos and I only, Jack Rabbits but our heritage has the same flavor. In this wide world, people are much the same.

Shiva at http://www.theshivasponder.wordpress.com my India, Indian friend who lives as far east as I live far west but still we find much in common. I am enjoying the process of learning more about India through this one kind man.

D. Wallace Peach at http://www.mythsofthemirror.com. My fantasy writer friend who lives in a rain forest, a place quite mythical to this desert-dweller, and writes fantasies governed by many wonderful moons. She is a strong source of encouragement for me in my writing, a great source of practical information, and a sister who loves nature with a love not unlike my own.

The Lonely Author, that loveable chimp, who’s words make women swoon. He is a flirt but also, a gentleman and I enjoy the posts he writes, exploring the crazy relationship we call Romance that forms in the chemistry and friendship between men and women. Find him at http://www.thelonelyauthorblog.wordpress. com. Ladies enjoy the beautiful words and images you find in his work and gentlemen, take notes!

This is my short list, whittled down from a long one. There are many talented, warm, loving people on WordPress that I appreciate very much. Know this nomination comes with no obligation but if you decide to participate, follow the simple instructions below:

  1. Thank the person who nominated you and post a link back to their blog.
  2. Use the “Blogger Appreciation Award” image.
  3. Write a positive paragraph about yourself.
  4. Nominate other bloggers whom you appreciate.

I often find myself at odds with the virtual world and write of it in the negative as I struggle to take part in it but also, maintain a healthy balance. Sometimes, I forget the positive force the internet is in my life. All of the people listed above and many more that I didn’t list are that positive force. The good work you caste on these digital streams every day have a ripple effect that has the power to change the world. All of you help me in so many ways you’ll never know and I can’t fully express. I am honored to be one among you. I love the diversity of peoples and ideas I’ve found here and enjoy a feeling of home in our commonality. I am getting older, I struggle with all that entails, but because of Jesus and the fact that Jesus lives, I have enduring joy. I started this blog to remind myself of my joy, in the hopes of spreading joy to others. After less than a year, I am amazed how God has used all of you to not only enhance the joy in my life but also, to enliven and encourage the other spiritual fruits to grow in the garden of my heart. Thank you all for doing what you do, for reading joyindestructible, and taking time to lift my spirits each day. May God bless and keep you all, always.

 

In a World of Wizards and Dragons

When the Wizards rise to power,

As men who favor magic set Nature’s God aside,

And beautiful horrible dragons fill the virtual skies!

Look but resist, don’t in fear cower;

Participate when you must, take the rest in stride;

Hold onto Truth, recognize deception and its lies.

 

“Drop your electronic device and move away from the windows!”

 

Shut it down, unplug, disengage, and go outside!

Welcome to this ancient world! Experience the joy and the pain!

Breathe deep in pleasured gasps, the air giving life to all the living.

The warm sun burns tender skin and man’s pride!

“Kiss the Son” while time remains, from virtual blindness refrain;

Don’t fear the dragon’s darkening in random smote so unforgiving,

Powered by fear, reprobate imagination to deride!

 

“Look up! Jesus is coming soon! Wash your mind in His Word and in Spirit pray!”

 

Don’t be overwhelmed by the Beast’s dazzling image!

Resist when they want to place a small chip inside your head, on your brain;

With the desire to govern over you, even through your inmost intimate thought.

If you must choose instead to be homeless, eat garbage,

Or die; Do this rather than surrender your eternal soul for only, temporary gain.

Soon this rising evil specter will vanish in its preset limit of which we’ve been taught.

Brother, remove your mind’s eye from this evil visage!

 

“Focus on Jesus, live in the real world. Take a walk, plant a garden, and hear the birds sing!”

 

Remember your children; Satan desires to devour them all!

Don’t allow them to live their childhood locked inside fantasy behind virtual walls!

Do they know that dragons aren’t real? Or that a sword in reality hurts and draws blood?

Mom! Dad! Take them outside, teach them to run and play ball!

Give them a puppy, a kitten, to hold, and to tend beyond the world of digital halls!

They need empathy now to ensure that the future they govern won’t end in a cruelty flood!

Show and teach them; Nature’s God is watching over all!

 

“Wizards and their dragons will vanish in the instant of a solar flare or crash of electronic grid.”

                                                                     Nature’s God Remains.

 

 

 

 

 

 

 

 

In This Sober Moment

When tragedy does a home invasion;

When calamity’s thugs beat down your door!

When the threat out there bursts into your safe haven;

When first fear and then anger rise.

There’s no time to think but only react and defend.

This moment is the force which reveals exactly, who you are.

After this trauma event passes and if you survive,

You’ll know with certainty every strength and weakness you possess.

And understand perfectly, what you can and cannot control.

There is no more harshly lit mirror than that of a very strong test.

Not only of your will to survive but of who you are as a person,

And your ability to overcome.

Are you alive for a reason? Or is it only lucky happenstance?

A second half of chaotic calamity…

Only faith can make sense of it and return reason to your life.

Jesus is reason when nothing humanly reasonable makes any sense.

He is validation when you find yourself hated for no reason.

The world hates Him too.

He knows what you suffer, He possesses no cruelty, and He really does care.

He carried you through it and you survived.

He will mend the damage, heal every wound, and replace everything lost.

Jesus is the power by which you survived to overcome.

In this sober moment everything is made crystal clear.

 

 

Tune of Heart

Oh! Listen to the new tune playing upon my heart!

It’s light as feather stirred by emotional weather…

Lifts by the sun; drifts with moon; love to impart!

Sets dreams aquiver, light of inspiration to deliver…

Dips down in a sad swoon, dream-despairing-heart…

Melancholy blue savor, open Door for sad-believer…

Breath of Life re-stirs my sensitive’s feather-heart!

Spirit Wind of Savior, blows away feelings-deceiver!

Strum Your melody; melt my tragedy; purify my art!

Song I sing to brighten other in heart-fickle weather…

New joyful tune, sun or moon, plays upon my heart!

 

The Source of Genuine, Indestructible Joy

My joy isn’t dead, no matter how I feel. Even though everything on my plate is seasoned with pain, Jesus lives! Though the boot-heal of oppression bears down in an attempt to grind me into dust, my hope is un-crushable. Even when my happiness shatters and all those I love move beyond my embrace, love isn’t carnal or mortal. When my body is broken, then passed around as bread and my blood becomes a drink, a sacrifice consumed but unrecognized, Jesus is my validation. He walked this path before me. He set the standard. True sacrifice isn’t made in hopes of personal reward. Though I fall and the weight of this cross I bear is too much for me to lift again to carry, God’s ultimate plan remains. When my eyes are blind with the tears of sorrow and agony causes me to no longer care, a new blast of His breath enters me and by His strength I rise to move forward. Though the sting of sin poisons everything I see and touch by the fulfillment of His Will, not mine, I will press beyond Death’s boundary and reach the ultimate prize. In Jesus I possess indestructible joy which He bought by His obedience and blazed the Way predestined for me to follow. This narrow path I must walk despising all worldly gain. I am nearer now to the finish than I was yesterday. Though in this world I endure suffering and can’t always feel my joy, when I finish this race, my agony will melt away. When my body dies to become ashes and dust, I know Death has no power over my soul. Though this present night is deepening, soon the Son will rise with healing in His wings! When morning comes, my feet will rest on the eternal shore. I will forget the effects of sin’s painful sting and cry no more. Jesus is my eternal joy.

Job 42:1-6 “I know that you can do all things; no purpose of yours can be thwarted. You asked, ‘Who is this that obscures my plans without knowledge?’ Surely I spoke of things I did not understand, things too wonderful for me to know. “You said, ‘Listen now, and I will speak; I will question you, and you shall answer me.’ My ears had heard of you but now my eyes have seen You. Therefore I despise myself and repent in dust and ashes.”

Paper Tatters Flying in the Wind

Write the number of my days on fine rice paper.

Tally them, and tear…

Delicate hand molded sheet into bits and caste it in the wind!

I can no longer understand the sum of those days nor transcend,

The heartbreak of futility or tragedy’s rude temper!

This calamity I fear…

Shattered my existence by the hand of happenstance I can’t bend,

Into a shape I can’t cope with, I can’t make my scattered mind comprehend,

How or why God allows evil’s continued mad caper!

In emptiness so clear…

I tremble in askance in the presence of my horror from which I can’t fend!

I’ve lost all surety of knowledge of just who I am in this ominous moment self-end!

Blanketed by sorrows I feel my faith’s diminishing taper.

Father rescue me here!

Without You, I am only tattered delicate rice paper flying in the wind!