Burdens And Rebirth

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Burdens…

The heavy load you carry when you live with chronic illness…

Guilt, shame, sadness, loss and loneliness…

Burdens…

What you impose on those you love…

Regret and embarrassment…

Burdens…

The thing you now loath about yourself…

Self doubt and lost confidence…

Burdens…

What you do not want to be in this world…

More guilt…

Burdens…

What keep you awake at night…

Fear and uncertainty…

Burdens…

What makes you tell people you’re okay…even when you’re not…

Lies and manipulation with good intention…

Burdens…

What make you feel less than you are…

Frustration, weakness, mortification…

Burdens…

What makes you miss who you used to be…

Despondency, melancholy, heartache…

Burdens…

What make you miss your independence…

Demoralizing…

Burdens…

What you must accept to overcome…

toleration, forbearance, endurance…

Burdens…

What make you want to fight…

A battle begins, hope emerges…

Burdens…

What push you to flourish in new ways…

Awakenings, awareness and appreciation…

Burdens…

What make you redefine your usefulness…

Renewed value and new opportunities…

Burdens…

What you commit yourself to break free of…

Deliverance, release, liberty…

Burdens…

What make you stronger in the end…

Revival, restoration and rebirth…

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Words

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A blank page.

A blank screen.

A flashing curser.

Words roll around in my head.

Words struggle to find a voice.

Words struggle to find a purpose.

Words are my friend, other times my enemy.

Words are illusive.

Words.

Words.

Words.

Words are exhausting.

Words are laborious.

Grueling grueling words.

Meaningless words.

I hate words.

Words are hard to put into context.

Words evade structure in my brain.

Words.

Words.

Words.

Words hurt me.

Words heal me.

Lovely wonderful words.

Words haunt me.

Words torture me.

Words challenge me.

Words change me.

Words speak to me.

Precious words.

I love words.

Remember Thanksgiving?

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What happened to the meaning of Thanksgiving?

In our over blotted world of too much stuff, it seems we have forgotten the true meaning of this holiday.

Instead it has become about gluttony, about eating too much, shopping for sales, and watching American football.

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Shops are now opening on the evening of Thanksgiving and somehow “Black Friday” has become “Brown Thursday.” WHAT? REALLY? What’s next, “Tan Wednesday?”

You’ve really gotta love capitalism.

It saddens me that this holiday has gotten so lost in a season that should be filled with the spirit of…well…thanks and giving!

Instead, it has become a holiday for stuffing our faces and running out to the mall only to get into a fight over parking spaces and final sale items on a tucked away shelf deep in the far corner of this or that big box store.

What happened to really and truly pausing in gratitude for all that we have been blessed with? After all, when you look around you, don’t you see people who have so much less than you? I know I do.

Recently, I heard a great quote on gratitude but I don’t know the author. “Gratitude turns what I have into enough.” I love this quote because I think it speaks to the true meaning of this holiday so much more than stuffing our faces or shopping for sales or watching football.

I have enough. I have more than enough. I am blessed.

This season I plan to focus on giving thanks.

Hard To Decide…And It Probably Doesn’t Matter

Sometimes it is hard to decide what part of my disease I hate the most.

Is it the constant shortness of breath as I quietly gasp for air?

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Maybe it is the persistent tightness in my chest from swollen lymph nodes and scarred lungs.

Sometimes I think it is the steady burning pain from the permanent nerve damage of a nearly 3 year old lung surgery.

Or could it be the never ending heavy weighted fatigue of every muscle and every bone and every fiber of my being?

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Joint and bone pain are certainly no fun.

The continuously itchy skin that keeps me awake at night is not what I would call a good time. Nor are the lesions I get on my legs and arms from this disease.

Oh, and how could I forget fevers…weird unexplainable random fevers that make me feel like I was run over by a truck from my whacked out immune system?

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Let me also include the side effects of my all my medications to treat this lovely disease…sour stomach pains, loss of appetite, food that tastes like metal and MORE fatigue!

I just can’t decide.

I have so many choices.

Lucky me!

I suppose choosing what I hate most about my disease depends on the day as it seems the symptoms take turns pushing and shoving trying to upstage each other.

But maybe it doesn’t matter. In fact it doesn’t. I know it doesn’t.

What I do know is all of these symptoms, pains, aches, and side effects make me feel like a very very very old 44 year old woman sometimes. That’s actually what I hate!

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There I figured it out! That’s what I hate…feeling old…older than I should I mean.

Thanks for reading this and helping me figure out what I hate most about my disease.

It is robbing me of my youth, darn it! Or what’s left of my youth…my middle age anyway.

Now…what to do about it?

No worries…I’ll figure something out!

Right?

Fellow Bloggers…I Dig You!

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I was hesitant to start a blog. I was hesitant to start a blog about something so personal…my life with chronic illness.

Once I participated in an online support group for people with my disease. I think I have written about this group here on my blog one other time. It wasn’t the most positive experience, I’ll say that. A group meant to be of support was filled with demoralizing comments toward people pouring their hearts out in pain and uncertainty. Even though I escaped most of this vial behavior from coming directly at me and even though it wasn’t always like that on the site there was enough of this kind of behavior that I felt the need to leave. I am sure this site is helpful for some. It just wasn’t for me.

The behavior I saw on that site was enough for me to think twice about starting my blog. People sometimes find it easy to hind behind their computer screens in anonymity and just be nasty in the comment section without thought that they are actually speaking to other REAL live human beings… with feelings even!

But since I started my blog, I have found a world of interesting people from all walks of life also willing to share their deepest feelings about a whole host of subjects and life events. A group of fellow travelers, if you will. And I am always amazed and honored at the kindness with which I am received by fellow bloggers.

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The encouragement I have found from my fellow bloggers has been overwhelming and outstanding. It has restored my faith that people aren’t all blind to the real flesh and the real blood sitting at the keyboard perhaps a world away from one another and that there really are people who WANT to be kind and supportive and encouraging of the endeavors of others…even complete strangers.

Fellow bloggers who follow me or browse my page from time to time or who take the time to write kind encouraging comments to my ramblings….thank you.

Fellow bloggers who take the time to write interesting, thought provoking blogs of your own…thank you.

Fellow bloggers who inspire, who write to make the world more interesting, who write to make the world a better place…thank you.

Fellow bloggers who write about things I know nothing about and whose wonderful words broaden my understanding of the world…thank you.

Fellow bloggers who write so much better than I do and teach me to be a better writer by your example…thank you.

Fellow bloggers who have the courage to share your experiences, your strength and your hope for a better world…thank you.

Fellow bloggers…I dig you!

“The Communication Syndrome”

“The Communication Syndrome”

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This was a phrase a friend of mine used to describe what it is like to try to communicate with people about having a chronic illness.

I think it’s brilliant.

It can be very hard to know how much to tell people, when to tell people, if you should tell people, which people to tell and if it’s worth it to even mention it at all.

Beyond that, when people already know about your disease and ask you how you are, you have to determine if they are asking out of obligation or out of real concern.

You must know your audience at all times. This can be exhausting.

If you guess wrong and start to tell someone how you really feel and see the curtain come down on their face as you tell them, then your feelings are hurt. It’s not a fun feeling when this happens…to feel discounted…to feel you’ve bored someone with your little problems.

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Then there are the times people ask how you are but you don’t feel like talking about it. So you just say that you are fine even if you aren’t.

Mostly though, what I know is that people don’t care or if they do, they don’t care that much. So, I have found it best to keep it simple or as simple as I can. Usually I say something like. “I’m okay. Thanks for asking. How are you?”

It always amazes me when you turn it around and ask someone how THEY are how quickly the conversation suddenly becomes interesting again. Generally people really only want to talk about themselves any way and only ask you how you are to be polite.

Occasionally when asked how I am if the audience is right, I’ll say something like, “Do you want the answer I usually give or do you want the truth?” But even then depending on who I am talking to, I may still give the “usual” answer that I am okay even if I’m not.

Like I said, you must know your audience at all times.

Learning to communicate with people once you have a chronic illness isn’t easy. It’s one of the things no one clues you in on and you find out the hard way that since most people cannot relate to you anyway, they generally shut down or they become embarrassed because they don’t know what to say to you. Then you feel uncomfortable because the last thing you wanted to do was make someone else uncomfortable.

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And let’s not also forget what happens when you finally do feel brave enough to tell people about your illness. They have the potential to start treating you differently…like you might break or something or even like you are now a leper…a freak…a weirdo…or worse yet…a fake because remember most chronic conditions are “invisible”.

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You cannot see the condition of my lungs. You cannot see how swollen the lymph nodes in my chest are. You cannot see my joint pain. You cannot see my bone pain. You cannot see my constant low grade fever. You cannot see my fatigue. You cannot feel my muscle pain.

Some people start to act like they can catch your chronic condition. That’s always fun…watching people physically step away from you.

So that’s why I think the term “The Communication Syndrome” is brilliant…because a syndrome is defined as an affliction, a sickness, a disorder. And communication does become disordered once you have a chronic condition. And you suddenly bear all the responsibility to make your condition okay for everyone else when in fact, being the sick one, everyone else should be making it okay for you!

But they won’t most of the time so the burden rests with you to figure out what to say, when to say it or if you say anything at all.