Spreading Awareness or am I Finding Purpose

I began this blog a while ago. I had zero direction other than I had something to say…. about just about everything! And I found my words to be an endless river of complaining, ranting, and purging what I felt was wrong in any given situation in my life.

When I slowly lost interest in keeping up with “blogging” I also lost interest in sharing anything because I had become a big downer.

It’s one thing to feel overwhelmed by sad events, bad news, poor prognosis, loneliness and feeling as if the universe had finally got to my place in line, it had now become my turn. The universe had looked over my resume and found me to be quite ungrateful for the wonderful life I’d been handed and was really mucking it up with all these negative posts, and woe is me stories.

My purpose for writing a blog had always been to share my stories about becoming ill later in life and great, positive words and thoughts to write, share? Inspire and help. Boy did I ever miss that mark!

Gosh, I can really complain and blame. So I stopped writing. If I had nothing nice to say, then stop writing it! And I did.

It was a good decision to do so. Because I’m not a writer, number one, and number two, it was bringing ME down!

Fast forward to now. After three years of struggles with Achalasia under my belt, I found my voice in vlogging. I’m able to express my self the best and in the truest form of me through speaking about my life.

Maybe I’ll find a happy in between point. I think I’m starting to.

I started my YouTube channel eleven years ago, it was about learning to play bass guitar as a form of doing something therapeutic for myself after my Lupus diagnosis. It was fun, helpful, and indeed therapeutic.

During this time, my health went down hill but I’ve learned a lot about coping with everything associated with illness. The most important lesson I’ve learned was what works for ME specifically. That would be by combining my love for music with the challenge of learning to play bass guitar, which is my favorite musical instrument, I could escape my dark thoughts of “why me,” “why am I constantly getting new and worse symptoms,” and, will I ever be well again?

Getting to the point here, my answer is yes. Yes it will help and I WILL, not meaning to, find purpose.

I’m enjoying making videos discussing my Achalasia and Lupus. I feel my personality is better expressed in talking about it, rather than writing because that’s how I’m wired.

So, my channel was restarted, but with a new theme, Achalasia. I don’t honestly care about the number of visits or subscribers. I enjoy sharing my story and hearing other people’s journeys.

I’m happy having this place to talk, even if it’s just to myself. I honestly am.

So, like they say, visit my channel! I’m just getting going. It’s about my diagnosis of Achalasia, lupus and eventually will discuss how playing the bass and music in general helps me heal and helps my soul.

Visit it at

https://www.youtube.com/emusedone

Click on my Achalasia playlist, there are also playlists of my bass guitar attempts!

Thank you and here’s hoping that if you’re finding yourself down or lonely, remember there’s always a positive to be found. Always.

REMEMBERING My Family SAVED Me 💙

Source: My Family SAVED Me 💙

This is a post I wrote in 2015. About my sister and brother in law. I lost them both, my sister in January and my brother in law the year before. I never dreamed they’d be gone so soon. I never dreamed I would lose them. Family is forever though

Let’s Be Honest….Rowing My Boat

This summarizes being ill.... Just Keep Rowing Your Boat!

This summarizes being ill….
Just Keep Rowing Your Boat!

I haven’t “blogged” for awhile. I haven’t felt like it.  Not inspired to share anything with anyone even though I’m the only person who probably reads this blog. I guess I didn’t want to share anything with myself it sounds like…. “SHARE” a funny word to use. You “share” your pizza, you “share” your crayons. I decided to look the definition up in the Internet dictionary.  WOW! There’s the noun definition, the verb (used with object) definition, the verb (used without object) definition, the adverb definition and the Idioms. None of which fit “sharing bad news or how bad you feel.”

I use this blog to write my feelings that need to come out in an honest way and if someone who searches the tags I use, might find it, maybe they’ll see that they are not alone in feeling miserable. Even though they Love the Lord as I do, have unshakable Faith (wait, I guess mine is NOT unshakable?) they know He walks their journey with them, but they have many hours of feeling alone, afraid, or angry. That doesn’t mean they have lost their Faith, it just means they are HUMAN. When I write, I ramble. When I talk, I ramble.  I jump all over the place, I wish I didn’t, but I do. I probably break every rule I was taught in English Comp. I KNOW I’m breaking every common core rule. But I don’t really care, WordPress has allowed us to have free blogs and dang it, I’m going to BLOG!

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Bitter Pills

imageThe Hits or “Pills” as I call them, keep coming. I again take from Kara’s blog, a kindred spirit. What she’s blogged is what I feel but have been unable to put into words.

But here goes….
These big pills life keeps throwing have been tough to swallow. They are nasty, big, painful and they are refusing to go down. To those that know me and have cared, thank you for hearing my heavy heart. Thank you for loving me in the midst of my fear and despair. I’m tired of me. Thank you for hanging in here with me. I love you and every prayer you pray for me. To my friends and family, forgive me for avoiding you. My pain is great both inside and out, and I’m fighting out of this hole. Please know you are much loved. Your acts of kindness may seem small to you but are huge to me. I so appreciate that when you seek me out, it is to share a smile and not ask of me anything. You don’t point out the mountains that stand in my way, reminding me I have to eventually climb them, you don’t ask questions. Because you know me well enough to see it on my face, or by my actions, that I’m not well and that I’m fighting. You understand that I do not want to talk about my illness. I don’t want to be reminded I feel horrible. I know I’m missing out on important friendships and relationships but I’m sick and trying to act anything other than that is too hard for me now.

I’m Dorothy in the Wizard of Oz standing with my little dog Sophie in the long hallway, and the wizard is behind the curtain, I finally get a moment of his precious time, he will see me now. When I pull the curtain back there sits a man with a white lab coat and a name written on it.

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As sure as the sun goes down and this moon comes up, I’ll be fighting

Taken in July 2015. Made me feel good to just stare and taken it all in...

Taken in July 2015. Made me feel good to just stare and taken it all in…

I can do this.  I can. And once I’ve done it, I will help someone else hear those words and BELIEVE them.  If you can, reach out and offer your hand or your positive wisdom to someone having a crummy day.  Not for a “Nicesest Person” award for the week, but because you looked in their eyes and saw the pain you’re so familiar with.

Something I’ve realized lately as well.  When you are sick with an illness, such as MS, Cancer, CF, or my little companion, Systemic Lupus (SLE) and are in pain and dealing with all that illness brings daily…..you don’t have the energy or the “give a rip” to even give those who speak about you and your illness a second thought.  You don’t care to address the “but you don’t look sick” comments. It doesn’t matter what others think, you are just too busy hanging on.

….and I will try to fix you

Hope

Hope

“I am the Lord who heals you.” Exodus 15:26

My favorite song by Coldplay is “I will try to fix you”

“….when the tears come streaming down your face. And you’ve lost something you can’t replace….could it be worse? Lights will guide you home, and ignite your bones, and I will try to fix you”

If Lupus SLE wasn’t enough, brewing inside me for at least ten years (the year of my first acute pancreatitis attack) has been my sickly pancreas. They’ve labeled it “acute pancreatitis” but that’s about it. No plan, no advice.
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INSPIRATION FRUSTRATION

Taking advice from Ben Huberman at The Daily Post I decided to start rhyming.

image
INSPIRATION FRUSTRATION

Inspiration all around
Turn on the smile, forget the frown.
But like every day there’s only pain,
Do I have to inspire or I won’t gain?

Gain the understanding, I need a hug.
Gain respect of this elite club.
Where pain & malaise is your daily routine,
And being inspiring makes you the queen.

It’s OK to have a Bad Day
Do I dare share that here,
or just hold it near, keep it
Together, full of good cheer.

I’m tired of smiling
Through my pain.
I’m tired of happy quotes
Because, today’s a bad day
Lupus Sucks, that’s my quote.

For once I’d like to say
this lupus sucks.
For once I’d leave out the “aww shucks!
It’s ok, I’m fine, I can beat this
In time!
I’m fine, give me time, it’s just a bout of bad luck”

So I write my feelings in
Draft form.
Of wrenching in pain, that’s my norm.
This day is BAD, no smile you’ll see.
Along with no hope, no happy, no end will there be?

Of suffering with an illness that has no cure.
That’s not inspiring, that’s for sure.

I don’t hit Publish
Only Save will I choose.
And keep it private to look at when days are unsure.
To remind me I don’t have to
always be strong,
and crying from frustration is not wrong.

Then wait for the next day I can smile and inspire.
Hit publish, look at me!
I got this! I’m a warrior, no frown will you see.

But the truth of this matter
My experience will tell me
A smile sends endorphins
that help me to be
A far better version of the person that’s me.

I have to admit, my first try at rhyming sounds a lot like Cat in the Hat. Maybe it’s because I read to my grandkids so much?