Category Archives: Cancer

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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Once in a blue moon

Blue Moon, July 31, 2015
Blue Moon, July 31, 2015

NOW I get it. I’ve used it many times, “once in a blue moon.” It doesn’t happen very often, and as I said, “as sure as the sun goes down and this moon comes up, I’ll be fighting.” Little did I know this event would fit my situation so well. That when you are living a life with obstacles around every corner, it’s easy to just be a negative person with no joy to be found OR be the most positive inspiration ever, smiling through your pain and telling others who suffer that they too can smile, be positive and BEAT THIS DISEASE!

I live my life in reality. If I feel crummy, I go seek out those things that have brought me joy; music, nature, the mountains, the sky, humor. So a support group for me isn’t an option, I don’t want to sit and compare my aches, my chances, or compare symptoms. I want to smile, laugh, sleep if I want. Because Lupus isn’t WHO I am, it’s an illness I have, and it doesn’t define me. That’s the positive message I want to share. That I’ll not always have the answers to my own personal struggles that come and go with lupus, but once in a blue moon it will hit me, “yes, sure today was crummy, tomorrow may be worse? So it’s time to go seek those things that brought me joy at one time. Keep fighting it. Laughter, smiling, beauty we see with the eye or hear with the ear release endorphins that no drug I’ve been prescribed yet can match for changing my crummy attitude.”

imageI was lupus tired yesterday. I figured there would be no viewing of a blue moon last night. But I set my tripod up anyway and when it showed up, well that was it! I was no longer tired, and I started snapping pictures. For an hour I forgot about struggles, aches and pains, and enjoyed a once in a blue moon moment! So, if you’re having a tough day getting through the maze of pain, illness, fear, and stumbled upon this blog, this is how I “deal” with the negative, by seeking out the positive. Doesn’t always work, but sometimes it does. I’m my own support because I know myself best.  There is beauty everywhere in this hateful world.

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.

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?

From There To Here….and back again

Having this inconvenient, obnoxious visitor who never leaves, it begins to wear a person down.

Before & After
Before & After

HOWEVER, if you are fortunate, you’ll get a break here & there. You’ll learn to rally. Life CAN be good again. May never be the “same” but there is always hope for better days, weeks, months. I’m still “SUSIE”…. I’m just different than before which calls for new memories to be made. Therefore I prefer to call my “battle” with Lupus SLE a “JOURNEY”
Or, better yet, a treasure hunt. But the treasures may not always be the good stuff you can take to the pawn shop. It may be the frustrating, scary stuff that makes you appreciate life, family and friends.

How the Senses Can Help Moods

Central Oregon Sunset
Central Oregon Sunset 2014

This evening as I drove home the sunset was spectacular. Where I live I’m fortunate to see many beautiful such events. But tonight the sunset seemed even more grand. Larger more defined than I’m used to seeing. I pulled off to the side of our country road and attempted to capture the beauty with my iPhone camera. But it just didn’t do it justice. This sunset had me mesmerized.

sunset_newI couldn’t help but FEEL GOOD for viewing this event. Sounds silly, but my sense of eyesite had overtaken my dull pain and changed my mood from exhaustion and wanting to find the nearest bed to standing in the middle of nowhere trying to focus my little phone on the beautiful colors. What pain? I HAVE to take a photo to share with friends & family! Soon the sun had gone down and the vibrant colors faded. But my good mood didn’t. I looked forward to getting home to check the photos on my phone.

Had I gotten any good photos? Did they capture just how beautiful & special tonight’s sunset was to….to me anyway?

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