If Only…

Raised in a Barn

*This article was written by a guest blogger. Sidany Hilburn, the Reporter for Quapaw FFA Chapter*

My small FFA chapter in Quapaw, Oklahoma recently began accepting seventh grade students to enroll in agricultural education. The class is divided between seventh and eighth grade students, a class that was so unexpectedly large that some students found themselves sitting on the floor. The sight of younger members engaging in FFA is one of my favorite sights; I often find myself wandering the ag building before first hour when they are impatiently awaiting our Ag teacher. I was preparing for an event one day this week and had my FFA jacket in hand when I walked into the classroom. A seventh grade student looked at my jacket and said; “That is sooo ugly.” For the first time in my FFA career, I was speechless. All I could do was stare, but looking back, I…

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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.

Humor just doesn’t cut it somettimes….

On my way to see my Doctor. Not so chipper on my way home though.
On my way to see my Doctor. Not so chipper on my way home though.

I haven’t posted a note in a long time, too busy dealing with the illness I write about.  I write about it in an attempt to deal with it.  Using my sarcastic humor which has helped me in many situations through the years, I’ve been able to leave this blog after my thoughts have been published feeling a bit lighter, optimistic.  However, lately it’s just not happening.  Loved ones passing away around me, dismal reports from uninformed doctors who don’t really know my medical history, telling me how bad things are. I’m missing my recently retired specialist of the last 20+ years.  He had this all under control…”THIS?” is “ME.”  If things were good we talked and laughed, if things weren’t looking so good, we still talk and laughed, with just a hint of seriousness and a lot of hope mixed in.  I still walked out of his office feeling like I will be going into remission any day now.  POSITIVITY & humor are my favorite scripts.

I’ve literally fallen apart lately.  How unfortunate! I was on a roll, a good one.  I may be in pain constantly, or staring at the ceiling at 2:00 am thinking about my latest bad blood test or hospital stay, but before Dr. Wonderful retired, I had an advocate.

I’ll get it together! Unless I get admitted to the hospital again for some new symptom.  I think I ache more for the people I see have just received their diagnosis, or worse yet, have been ill for so long without a diagnosis and waiting to get into yet another doctor for help.  What a true SICK CYCLE CAROUSEL.

My morning friend, Fred or Fredia the Hummingbird
My morning friend, Fred or Fredia the Hummingbird

Keep you chin up folks. There’s GOT to be help out there. Until then I’ll leave you with a couple of photos I’ve taken lately to take my mind off of Systemic Lupus (SLE). Remember, you are all loved, you WILL get through this, you don’t HAVE to smile all the time and pretend you’re fine. And it’s perfectly FINE if you are ill and don’t want to keep defending yourself to the unbelievers.  Can you tell I’m not having a good day? Week? Month?  Yep….. but it’s all going to be ok soon.  Until then, peace and love and God Bless you.

….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.
Continue reading ….and I will try to fix you

INSPIRATION FRUSTRATION

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

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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?

Turn the Other Cheek…. If You’re Able To Move

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“I do not feel like I have the courage for this journey, but I have Jesus—and He will provide. He has given me so much to be grateful for, and that gratitude, that wondering over His love, will cover us all. And it will carry us—carry us in ways we cannot comprehend.” from Kara Tippetts, Mundane Faithfulness

This post is more for my own personal venting. Venting about two months of trying to find a new doctor and what I’ve encountered. Poor me, yes I’m choosing to feel sorry for myself for a moment. Long enough to first write the disclaimer that I do indeed have FAITH, I know I’m not alone in this. But the human in me needs to get this out, to share my real nightmare journey. That I don’t feel like I need to always smile, to always respond, “Oh I’m ok, tomorrow is a new day and new blessings.” I’m being real here. Even with Faith, I have very low times and I question why or I’m struggling to hear from God how I can help myself.

The above quote from the fabulously faithful Kara Tippetts’ blog, who recently went to her eternal home after her long fight with cancer, came to my mind. She shared her journey. The up’s the down’s the in betweens. Her Faith was solid. I learned a lot from her writings. I felt like I had no business complaining or whining. My illness isn’t “terminal.” It’s just “loaded with preservatives.” Meaning, with new drugs like Prednisone and Plaquenil you’re expiration date is longer. The life expectancy for someone with Lupus wasn’t too good but in the last ten years they’ve come a huge way and a person can live a long a long life. But this disease is one big cruel mystery, a ever ending lineup of sub-contracting illnesses like kidney disease, heart disease, all known as “complications of Lupus.” So you don’t get the “Terminal” stamp but rather the “It’s Complicated” stamp. I feel like I’m at the carnival riding in one of the rail cars in the haunted house. You don’t know what to expect around the next corner.

GI Tract Complications
GI Tract Complications

How dare I break down and complain?! Truth is, I can if I want to. Then I can count my blessings which are many.  My journey is not a constantly torturous one, nor is it in preparation for my journey to my eternal home. Thing is, it’s not considered terminal so don’t get your affairs in order….BUT, it CAN take your life, “we just don’t know.”

A known illness like SLE may have a name, but its cruelty is a mystery, it’s determined to keep the sufferer in constant, painful transition. To give false hopes of a reprieve, before it shows you it has the power to take your last breath from you. However, it can’t take His love from me and the blessed assurance Jesus’ constant presence is mine and I know where I’m going. I’m not blindly following a religion because “now I’m sick,” I’ve spent my life in a private journey learning about God, Jesus and my own PERSONAL beliefs and relationship with a loving Creator

I had the honor of being interviewed by the Lupus Foundation’s magazine, Lupus Now, in their Spring 2015 issue. The topic I was asked about is Lupus and GI Tract problems. I was interviewed back in November of 2014 when I still had a primary doctor and things were looking up. I mentioned being your own advocate and it turned out I really needed to and still need to be so. Read this interview here.

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But I am human and I’m tired and frustrated.

I love my Creator. God has been my constant companion throughout my life. I work hard at living my life from His teachings. Jesus is my Savior. Now comes the part of me that has had just about enough of struggling through mankind’s messing things meant for good up. Greed, unkindness, a knack for superiority over those unable to fight for themselves. I always forgive, the meek SHALL indeed inherit the earth, however, the “turning the other cheek..” part has been difficult because I’m unable to turn the other cheek. It’s too painful, Lupus SLE and kidney disease has me pretty much unable to move, I can’t turn my body….period. It hurts.

Ha, ha I know. Funny analogy! But painfully true. I’m taking a step back from complaining about senseless, everyday annoyances. I have a story to tell. It’s of my journey in the healthcare maze these last several months. Actually, it started back in November of 2013 with a hospitalization for acute pancreatitis but I won’t bore myself or anyone who accidentally reads my blog with the specifics.

Continue reading Turn the Other Cheek…. If You’re Able To Move

Lupus SLE & Life

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