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Sarcoidosis Soldier

~ Life With Chronic Illness And Other Ramblings

Sarcoidosis Soldier

Monthly Archives: January 2016

Finally…Some Reality on “Reality” TV But Not In A Good Way

31 Sunday Jan 2016

Posted by sarcoidosissoldier in What It is Like To Live With Sarcoidosis

≈ 1 Comment

Tags

Attitudes, Awareness, Choices, Judgement, Reality, Sarcoidosis, Truth, TV

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I don’t generally watch “Reality” TV. I’m not a fan of it but the other night there wasn’t much on, and I was channel surfing. I came across one of those Real Housewives shows…I don’t really know which one but it caught my attention because the wives were talking about another wife faking illness. I watched a little longer and learned that the wife they were talking about had been diagnosed with lyme disease and they didn’t believe she was sick.

They questioned her sickness because her symptoms were vague. They questioned if she was sick because her social media posts were a combination of pictures of her in the hospital and pictures of her on a boat enjoying her life. One wife said that this didn’t “make sense” because if you were really sick then you’d “be sick” and you wouldn’t be on a yacht one day and in the hospital the next. These women speculated about the other wife with great indignity. They spoke about her with disapproving tones.

The women even talked about her possibly having a psychological condition called munchausen syndrome . Munchausen syndrome is a mental disorder in which a person repeatedly and deliberately acts as they have a physical or mental illness when they are not really sick.

I found myself, somewhat embarrassingly, glued to the TV.  I couldn’t help it because I know that I too have been judged. I know that people do not judge me to my face. I know that I have been deemed a liar and talked about by some who claim to support me. When you have a chronic condition, it becomes second nature to know who these people are. I’ve learned to sense it. I don’t have to hear what they say behind my back because I can feel it in their presence.

But, I have also learned not to care about what other people think or if they understand me. I only have so much energy and I need to use it wisely. I will not waste it on being upset by the ignorance of others. I know the truth and that is all that matters. I know that when I play tennis, I pay for it for hours and sometimes days afterward but that doesn’t mean I should give up playing. I know that trying to look as well as I can is something I do for my mental well being, even if happens to confuse others. Why should I try to convince them I am ill by neglecting myself. If my desire to live as normally as I can in between the bad days confuses some people enough to judge me, so be it.

Those housewives were unnecessarily cruel in their judgement of the other one. They were smug and arrogant in their certainty that she isn’t really sick. Shame on them. Shame on anyone who uses their time and energy to judge what they cannot possible understand.

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The Beginning Of Acceptance

28 Thursday Jan 2016

Posted by sarcoidosissoldier in Thoughts On Life

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Tags

Acceptance, Awareness, Change, Choices, Happiness, Honesty, life, Peace, Sarcoidosis, Truth

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Acceptance starts with reality. It starts with looking the truth in the face and being willing to take the pain, the uncertainty, the regret and the sorrow for what it is. Acceptance starts with being practical. It starts with seeing the bad with the good and knowing both can exist in the same space, at the same time.

The beginning of acceptance is the start of clear sighted thinking. It is full truth about that which is hard to face, but being accepting is not being weak. It is not being negative or failing to have faith. It is not lacking trust in good things to come. Acceptance is not giving in to bad things, it is acknowledging them, in order to move beyond them.

In order to change, in order to grow beyond the stagnation of pain, sorrow, regret and fear, we first have to see that this is where we are. Sure, it’s difficult but at least it is honest. The beginning of acceptance comes at a price but it is well worth the cost because the price we pay for denial is what causes the most pain.

The beginning of acceptance takes bravery. It takes a desire to reach into the darkness and shine a light on embarrassment and shame. It requires us to reconcile our regrets and make amends. It forces us to acknowledge our deepest fears.

Acceptance is hard work.

But, the beginning of acceptance is the answer to all of life’s challenges. It is letting go of false control and recognizing that we are exactly where we need to be. The beginning of acceptance is a confusing journey for which there is no map other than total truth and brutal honesty. And, honesty and truth are not always pretty.

The beginning of acceptance is messy. It unearths our deepest sorrows in order to weed them out but the beginning of acceptance is like starting a new garden with fresh seeds. It heals us, gives us light and allows us to grow in new and profound ways. The beginning of acceptance is the beginning of serenity and peace.

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I Seek No Answers

27 Wednesday Jan 2016

Posted by sarcoidosissoldier in Attitudes, Thoughts On Life

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Tags

Acceptance, Awakenings, Balance, Choices, Faith, Happiness, Honesty, life, Love, Peace, Time, Trust

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I do not waste my time with why…

I accept what is rather than what might never be…

I laugh at the joy and cry with the pain…

I focus on reality while I cling to hope…

I assume nothing about what I cannot understand…

I humble myself to what is…

I am awed by things greater than me…

I embrace this moment for being what it should be…

I adapt to the here and now…

I respect my place and position in time…

I seek no answers…

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A Devilish Disease…

26 Tuesday Jan 2016

Posted by sarcoidosissoldier in What It is Like To Live With Sarcoidosis

≈ 6 Comments

Tags

Acceptance, Chronic Disease, Sarcoidosis, Strength, Struggle, Truth

 

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What disease isn’t, right? I know. But, sarcoidosis is the devil I happen to know and know intimately. This particular devil is the one I am saddled with. I’ve come to know all its black magic and evil witchery. I’ve come to anticipate its tricks and sleight of hand.

Why do I call this disease a devil, full of dubious undeniable deception? An excellent question but one not easily answered as this disease is a great mimicker, a shady character, prankster, a liar and a faker, fooling me to believe in the wildly unpredictable promise of easy recovery, a happy ending.

Often masking itself as cancer or MS or some other terrifying disease, I am left feeling a false sense of relief that it’s only sarcoidosis. Even many doctors are fooled by this demon destroyer, knowing so little about it and believing the hype that high doses of steroids will exorcise it from the body. High doses of steroids, an easy fix…until it too begins to decay my body and my soul from the inside out. And when steroids don’t work, how about some chemo therapy. Don’t worry, it’s a low dose, they say. It won’t hurt you, they say. Funny though, how they send me for blood work every six weeks, just to make sure my liver doesn’t cease to function. Funny how ghastly I feel on a low dose of chemo therapy.

Even the hope of remission is a lie. This disease may ebb, but the ravages it leaves in its wake are sometimes as bad as the disease itself…nerve damage, brain fog, weakness, unyielding joint and bone pain, scarred and failing organs. One way or another this disease does not leave. It has marked me for life. I cannot escape its taunting evil grasp.

Soon I learn in new and annoying ways, that this devil is as cruel and sadistic as they come. This devil hides itself so deeply inside me, that no one notices it. No one can see it or feel it but me.  “You don’t look sick” becomes a common comment, one so familiar that even I begin to doubt myself, feeling stripped of my sanity because my inside and outside no longer match.

This disease is the devil I know. I’ve become accustom to its pranks, the way it lulls me into believing I am healing, only to turn around and knock me down with a flare so powerful, the Hoover dam could not stop it from flooding my body. Oh, this is the devil I know because right after a good day, I will have a wretched one. I will have a day so bad, I wish I would die. Yet, this disease is so evil that it has taught me how to do this with a smile on face. It has made me a master of its disguises. I have become its puppet. A faker too.

I hate this confounding, misleading, disruptive devil with every fiber of my being. But, it is the devil I have had to learn to tame. It is the devil I have had to learn to co-exist with, a devil not of my own making but a devil I know will never leave me.

It is a devil I must accept.

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“…A Good Man…”

24 Sunday Jan 2016

Posted by sarcoidosissoldier in Relationships

≈ Leave a comment

Tags

Blessings, Choices, Faith, Grace, Gratitude, Happiness, Joy, Love, Relationships

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I said…”Thank you for being such a good man.”

He said…”It’s easy to be one for you.“

I realized that I am the luckiest woman in the world.

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Vegan Banana Bread

22 Friday Jan 2016

Posted by sarcoidosissoldier in Healthier Habits

≈ 2 Comments

Tags

Baking, Banana Bread, Cooking, Healthy Choices, Healthy Eating, Recipes, Vegan, Yummy

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Ingredients:

  • 4 over ripe bananas
  • 1 1/2 cup all purpose flour – I used whole wheat flour – it was all I had handy…still worked just made the bread a little denser
  • 1 1/2 teaspoon baking powder
  • 1/2 teaspoon baking soda
  • 1/2 teaspoon cinnamon – I use a little more…I love this spice
  • 1/2 teaspoon vanilla – optional
  • a pinch of nutmeg – or maybe a little more
  • a pinch of salt – really just a pinch of this stuff…no more is needed
  • 1/4 cut coconut oil – melted
  • 1/3 cup brown sugar – packed – I used dark brown – I like it better
  • 2 tablespoons crushed walnuts – optional  – I didn’t have any handy the first time I made this so I used chocolate chips…dark chocolate vegan chips…YUMMY!

How To Prepare:

  • Preheat oven to 350 F
  • In one bowl sift together the flour, baking powder, baking soda, cinnamon (if using), nutmeg and salt then it set aside
  • In another bowl, mash up peeled and over ripe bananas until they are completely smashed and goopy…don’t leave any large lumps
  • Then add in sugar, melted coconut oil and vanilla (if using) until well blended
  • Next fold in the flour mixture to the wet mixture and stir until well blended
  • Add in walnuts or chocolate chips  – if using either
  • Put mixture in a greased bread pan and bake for 25-30 minutes – until a toothpick or fork comes out of the bread cleanly – don’t over bake (don’t you love it when people tell you this…duh!)

ENJOY with a nice glass of dark chocolate almond milk!

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To Rest…To Sleep…To Dream

21 Thursday Jan 2016

Posted by sarcoidosissoldier in Thoughts On Life

≈ 2 Comments

Tags

Comfort, Definitions, Dreams, Happiness, life, Sleep, Words

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A peaceful snooze of cotton candy dreams…

A deep tranquil slumber of quiet empty thoughts…

A still moment of gentle calmness in the mist of a chaotic life…

A serene lethargy of contented mindless boredom…

A joyful period of lazy sloth like inactivity…

A relaxed repose of warm pillowy comfort…

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Grief’s Irony

20 Wednesday Jan 2016

Posted by sarcoidosissoldier in Thoughts On Life

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Tags

Acceptance, Change, Definitions, Denial, Grief, life, Longings, Loss, Love, Relationships, Strength, Struggle, Truth, Words

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It grips like a vice, tight and unyielding, with a crushing force of unbearable pain, but not before it twists our hearts into a knot, forcing them out of rhythm and shattering them into tiny unrecognizable pieces.

While time may produce scabs, there is no such thing as healing or moving on or closure or peace. Once it finds us, we cannot escape it and we are never who we were before it set upon us.

It shows up without warning, without mercy or care to how it reeks havoc in our lives, laughing at our torment like an ugly clown at a freak show circus.

Loud and dark and cold at first, it slowly ebbs into a dull chronic ache, flaring at unpredictable moments of quiet, exploding into a raging white hot hurt that all at once, feels familiar in its wretched agony.

Taught to face it in stages that lead to acceptance, a lie we tell ourselves to cope, as there is not one thing tolerable in the emptiness and sorrow that fills our soul from its presence in our lives.

Yet, it is inescapable. It finds all of us, one way or another and all throughout our lives to varying degrees. We learn to suffer through its misery. The irony being, that without it, we would not know what love truly feels like. We would not know the meaning of life.

Despite its necessary cruelty or perhaps because of it, we would not have the benefit of understanding what we have because in a nasty twist of fate, we must lose it to have the fullest knowledge of its gifts.

It is the loneliest experience in life and the hardest part of love.

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Easy Love…

19 Tuesday Jan 2016

Posted by sarcoidosissoldier in Thoughts On Life

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Tags

Acceptance, Balance, Choices, Definitions, Family, friends, Growth, Happiness, Joy, Love, Peace, Relationships, Trust, Truth

images (6)

It comes so sweetly in an effortless wave of warm soft sweetness.

It feels safe and like a mighty fortress, nothing can destroy it. 

It enjoys playful banter and does not tire of silly flirtation. 

It never falters, but is instead strengthened by life’s weight. 

It understands kindness, always truthful, yet quiet when it should be. 

If grabs hold with a gentle touch, leaving no scratches or scars. 

It bountifully creates good fortune for all in its path. 

It solidifies with the benefit of perspective and the teaching of time. 

It absorbs pain, filling lonely voids with its grace and simple affection. 

It naturally forgives, requiring no explanation for another’s trespass. 

 

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My Life Is Beautiful

18 Monday Jan 2016

Posted by sarcoidosissoldier in What It is Like To Live With Sarcoidosis

≈ 1 Comment

Tags

Acceptance, Attitudes, Awakenings, Awareness, Balance, Choices, Chronic Disease, Happiness, life, Love, Peace, Sarcoidosis, Truth

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I wake every morning with the knowledge that I have a disease that could very well kill me someday. While a great many people with my disease do go into some kind of remission and live the rest of their lives never looking back, I don’t have that luxury. I have a chronic persistent version of sarcoidosis. Sure, I have periods of quiet, moments of reprieve, but this disease has irrevocably changed my life. I am weaker. I am forever more frail because of it. I am damaged in ways that cannot be repaired and are not always visible. I will never know the joy of a full breath. I will forever struggle with fatigue and occasionally crippling joint or nerve pain or both. I live with the knowledge that my disease can strike me at will wherever and whenever it wants. There is no cure for my disease. I live with the knowledge that I am to some degree at it’s mercy.

Now, I don’t say all of that for sympathy. Nor do I expect or even want anyone’s pity. I say all of this, to say one thing. My life is beautiful.

If this disease has taught me anything, and it has taught me many things, it is that no matter what happens to me, I have a choice in how I am going to accept the challenges that befall me. I can feel sorry for myself and be consumed in pitiful grief that this thing or that thing has happened. Or, I can decide to focus on life’s grace and give thanks that I have been given another day to cherish.

I’m not saying that the occasional bout of self pity isn’t a good thing. I think it is perfectly fine to have my moments but what is not fine, is to live in them. It is not fine to live in a state of utter unhappiness about that which is out of my control and as it turns out, most things are out of my control.

I have a disease that could very well kill me someday. I am not going to waste my time in misery over it. I could just as easily be hit by a bus but because I have this disease, the idea that time and life are precious, is never far from my thoughts. Today, I choose to view the world through this filter because it puts things into a much more meaningful perspective and I have a deep understanding that my life is gift.

My life is beautiful.

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