If You Look Closely…

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September 28th to October 4th

On the surface, I don’t look sick in any obvious way. I have honed my abilities at keeping my carefully crafted facade from showing visible cracks. If you look closely and take more than a passing glance, you might see a slight wince of pain or a shallow gasp for air. You might see a tiny tear in the corner of my eye. If you’re really looking, you might notice that my step is a little slow and my gait is deliberate as my legs move in sluggish discomfort.

I am what a person with an invisible illness looks like and am this person because on the outside there are no immediate signs of disease. I am not missing hair. I don’t look disheveled. I smile at your jokes and converse with apparent ease. But, my brain is foggy, thick and muddled. If you listen carefully, you can hear me struggle for the right word as I pause ever so slightly.

Life with an invisible illness is complicated. It’s a double life. It’s a private life. It’s a secret life. Few take notice and those who do are discomforted by their inability to comprehend it. People often cannot reconcile what they cannot see. Seeing is believing after all. So, it’s a quiet struggle. It’s a closeted battle. It’s a lonely experience.

I have a rare disease with name that sounds made up. I have a disease with no known cause and no known cure. My disease is even invisible to much of the medical community. I have a largely misunderstood disease.

I am what a person with an invisible illness looks like. I am alone in a special kind of hell, fighting for a normal life. You think I have one because you cannot see the war that rages under the surface of the exterior of who I am. I don’t expect you to know my pain.

I am an isolated warrior. I fight alone.

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Look…We Get A Week…Lucky Us!

INVISIBLE CHRONIC ILLNESS WEEK: SEPT 28th to OCT 4th

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And I don’t “look” sick…whatever that means!

In fact, I look better than I have looked in a long time.

Looks can be deceiving.

You can’t see my struggle for air.

You can’t see the pain my muscles.

You can’t see the weakness in my legs.

You can’t see the tightness in my chest.

Part of this is me.

I hide it well.

No one knows another person’s battles.

No one should judge what they don’t understand.

We are all fighting battles no one else can see.

The Importance Of A Proper Pity Party

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Life is full of challenge. Life is not easy. No one escapes life’s indifferent cruelty. Life is also full of joy. Life can be beautiful. Everyone has the opportunity to experience life’s grace. One of the ways to get through the pain and difficulties in order to get to the joy, is to have yourself a pity party.

A proper pity party is a no holds barred full on festival of tears. It’s all about a good old fashion ugly cry face and a box of crumpled snot filled tissues all over the floor. It’s about getting your shirt wet with the salty water that pours from your eyes. A proper pity party is full of body shaking wales of anguish.

There are a few rules for a proper pity party. A proper pity party is time limited. It requires a bit of disciple because you have to know when to stop. A proper pity party is occasional. It is not a day to day way of life.

The importance of a proper pity party cannot be under estimated. It leaves you feeling refreshed. It clears your mind and opens your heart. A proper pity party washes away fear and makes room for faith. It changes your outlook and actually gives you hope.

The Independent Blogger Is Challenged By The Word Guy…

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My husband is what I call a “word guy.” He’s an expert with grammar and spelling. He has an app on his phone that gives him a new and unusual word every day. My husband was an English major in college. He only reads “the classics.” Early in his career, he was a technical writer. My husband is the kind of person who takes what people say literally. When you speak to him, your words need to be precise or he gets confused. He has a keen grasp of the English language. He’s an excellent writer.

I am not. I do not write my blog in order to better myself at this complicated craft. I do not write with precision, and I am sure that my grammar is sometimes suspect. I was not an English major in college. I studied social work. My motivation for writing is two-fold. I write because it helps me clear the noises in my overactive brain. I also write in hopes my wisdom about life with a chronic condition will be helpful to others who are unable to express themselves. Expressing myself, even if not perfectly, has never been a problem for me.

It bothers my husband that I don’t seek his help in writing my blog. He’s puzzled by my lack of desire to better my work. He feels slighted that I have not sought the depth of his knowledge about writing and words and grammar and language. But, the truth is, it never occurred to me to even ask him, and for me, it wasn’t personal. Our motivations for writing are simply not the same.

But during an interesting conversation yesterday where these things were revealed, it was also revealed that he seeks help to better himself wherever he can and I often opt to go it alone. It rarely, if ever, occurs to me to ask for help. If I can do something independently, even if not perfectly, I will.

The truth of the matter is, my husband’s expert knowledge about writing and words is a bit intimidating. I’m not really looking for a critic of my blog. My blog is personal. It’s about my ideas. It’s about my thoughts. It’s about my feelings. My husband says that I would be better able to express these things if I were a better writer. I know he’s probably right about that, but my independent instinct to forge ahead doesn’t really make room for this.

I don’t know if I want to be a better writer. This is how I know I am not a “word guy.”  I don’t have the same commitment to the art of writing that a real writer has. I want to be good at expressing myself, but I don’t feel like I have to be the best at it. Maybe that’s lazy… but at least it is honest.

My goal in writing is to empty my head and perhaps to spill a little of what’s inside my heart. I need my blog for therapy. I worry that if I let “word guy” loose on it, it will become more like work and less like joy.

It’s not personal. I have the utmost respect for my husband’s abilities. It simply never crossed my mind to ask him for input because my blog is emotional. It’s personal. It’s me.

On the other hand, maybe I need to learn to ask for help. Being independent is great. It’s important. I’m proud of my independence. But, we are often made better by the wisdom of others and foolish not to accept it. It may even be hypocritical of me not to accept his help, especially when I claim that one of the purposes of my blog is to impart my own wisdom upon others.

“Word guy” might be on to something….

Tested

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We are tested in this life. We are challenged by that which we cannot control. We are made humble by what beats us. We are made stronger by our victories. We are made better in our humanity when we accept our losses with grace and cherish our victories quietly.

We are tested by our circumstances. Do we dwell or do we excel? Can we withstand the pain in order to grow into better people or do we wither and wilt? Do we become victims or victors? Do we allow pain to be a teacher or do we remain stuck in the depths of self pity?

We are tested in every situation in our lives to see the joy or feel the sorrow. We are tested in all things great and small to learn important life lessons about love, trust, faith and attitude.

We are tested.

How we respond to these tests tells us who we really are.

Autumn is…

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Pulling up the comforter at night when you sleep with the window cracked to let in crisp cool fresh night air.

The stunning beauty of nature’s grace as leaves turn from green to bold red, burnt orange and canary yellow.

Carving pumpkins, trick or treating and all the delights of Halloween.

Wool sweaters, boots and scarves and the beginning of hot chocolate season.

Cool mornings to walk the dogs, temperate afternoons for apple picking and chilly evenings for bonfires. 

A time to catch up on old movies and snuggles as the first fire of the season crackles in the fireplace.

Shorter days that allow you to sleep in on a lazy Saturday morning.

A Storm’s Coming Through…

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Life with sarcoidosis is an awful lot like life in a tornado zone. It can be sun and blue skies one day and then the next it’s all twisters and destruction. You have to be on guard all the time and you have to keep your storm shelter well stocked just in case of emergency.

If you’re in the path of a tornado, you can expect mayhem and devastation to follow. The same can be said for life with sarcoidosis as it rips through your body blowing the roof off your once solid health.

With sarcoidosis, doctors like to talk about “active” phases of the disease and they use words like “remission” when symptoms are managed with medications. The reality of this disease is even when you’re not in the center of the storm, you are in a constant state of rebuilding yourself because the ruination this disease leaves in it’s path is significant and often unceasingly cruel.

The damage caused by sarcoidosis is brutal. It is literally unnerving because it destroys nerves. It also leave scars on the inside and the outside of your body, most of which cannot be fully healed.

While a tornado might tear your house off its foundation, sarcoidosis rips through your life in much the same way. It changes everything, leaving the life and world you once found comfort in, unrecognizable, leaving you feeling forever vandalized.

Tornadoes can be unpredictable. They can start out in one direction but a swift gust of wind and they move just a enough to go from being potentially threatening to life altering. Sarcoidosis is the same in the path that it takes through your body and how it responds to available treatments. There is no way to stop a tornado and there is no known cause or cure for sarcoidosis. If you happen to find yourself in the path of either of these things, all you can really do is brace yourself and hold on tight to wait it out.

Once it passes, you assess the damage and begin to rebuild but even as you do, you know it isn’t over…because another storm will be coming through and you’ll find yourself once again at its mercy, just trying to survive it.