Arriving at Acceptance, the Stages of an Illness

 

EmusedoneWith this new year has come a strange calm. A feeling that the control I thought I didn’t have I’ve never really lost. That being a healthy, active wife, mother for years to suddenly a disabled shadow of a person wasn’t because an illness came and took over, taking my control with it and making me a useless burden. But rather I was never promised the perfect life without struggles, and that is a good thing. Because it’s honestly is through the struggles of illness I have grown to be a better wife, mother and now grandmother.

There are hundreds of books by inspiring writers who are soldiering through illnesses, situations, troubles. On any given day I can turn the television on and accidentally end up watching an inspiring interview of a person who is beating the odds and thriving during adversity or scroll down my Facebook Newsfeed to see more inspiring stories, situations that are far worse than mine could ever be. It’s during these moments I realize that had I not “gotten” Lupus or struggled with Achalasia I think I would have just turned the channel, or just kept scrolling down my Newsfeed until a funny video caught my eye or a new recipe looked like something I should copy down. That my illnesses have made me more in tune to others. Their stories inspire me, some break my heart, some anger me and push me to join the cause. My illnesses opened up a world, one of compassion, understanding and strength. Continue reading

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

Meaning in my Mornings (my mornings are mean)

I said earlier, struggles will come and go, it’s life and this particular struggle has entered my mornings in the past year. It has taken me almost a year to search for meaning in it, because I have to always figure out what the heck?! Why this?’ if I’m the only person who feels this in the mornings, is there a fix? So, I finally Googled “morning depression” because that’s it in a nutshell. I’m awakened every morning in a horrible depression. Usually I’m sweating, in pain, almost paralyzed from even turning over much less putting my feet on the floor and trying to wake myself up from this horrible experience.

Once awake, and when I’ve managed to sit up for awhile, about an hour, the whole event, the depression, sweat, pain fades. On its own, without even a sip of water, it fades. Every single morning.

I’ve prayed before falling asleep that my morning will be normal, my old normal, where it just takes me a bit to wake up, my joints are sore but I’m used to it. I would always greet morning with anticipation of what the day will bring, what needs to be done today, etc.

But, this morning depression has pushed its way to the number one issue I dread, edging out the Achalasia pain when you can’t swallow and everything Lupus. Beating myself up has become a daily exercise.

However, I’ve felt, in my heart, that I need to find reasons followed by SOLUTIONS for this morning depression. Not the old me, where I’d find possible reasons and continue on searching all the bad, sad, negative stories, thus bringing me down even more and pushing that hope I’ve always had so far back in my mind that I felt no hope. I would just feel that this was yet another rotten symptom of my illnesses that I had to learn to live with.

That’s the difference here, an uncomfortable symptom appears, throw my hands up and say, “why me?! Really?! What more can happen?” Never say that, because something more can happen and you’ve (me, this isn’t a “how to handle things” blog, it’s me writing for myself. Getting it out, to revisit when dark days roll through) set yourself up for continually feeling as if you’re being punished. I’m not being punished, I happen to have Achalasia, systemic Lupus, and with these illnesses come symptoms, and with these symptoms come the challenge to identify ways, if not a cure, but at least to learn why and how to make them easier to deal with. Knowledge is power, with this power comes hope.

So, back to this morning depression thing. Since I’ve learned to research with a positive mindset instead of searching to find reasons to feel hopeless, I’ve been figuring out what may be happening and attempting to write things down to compare what might be leading to this. I’ve found an entire group of people who deal with this and the reasons, the research being done, how my current illnesses may be leading to it and how to try and change my nutrition or medications to see if I can ease it.

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MY LUPUS JOURNEY 2013 to Now

A republish of a post 5 years ago. I thought the worst had hit, but I was wrong. More illnesses and tougher battles and loss. Lupus SLE, Achalasia, pancreatitis, just a list of this and that! But, within the brokenness of these cruel illnesses is an understanding that what I see that is beautiful is so much more beautiful now. I take nothing for granted, I love with everything I have inside my heart. Like I said, Life is a GIFT, No matter how it’s wrapped.

This short video is how, in less than one year, a Lupus SLE flare took me for a ride. From feeling good and healthy to the brink of death. Then the struggle to gain back as much of me as I’ve been able to. I have a ways to go but I’m on my way.

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.