That’s Not News

I miss the days of the 6 o’clock news. The days before CNN and other ’round the clock news channels. When the news was a matter of reporting facts. The stuff that happened, the weather and sports. Simple. 

In my little community, our newscasters were rockstars. The female weather caster with instantly recognizable hair, became the go-to hairstyle for many a local lady. 

We would see the lead newscaster out and about in the grocery store and lose our mind. We’d begin conversation like we were talking with a movie star, I wonder how many autographs were signed in the produce aisle. 

Today we report on the celebrities and the stupid crap we are supposed to be impressed by. We’ve made people famous for being absolutely shameless attention whores with zero talent. I just don’t get it. 

Athletes making more money than any human aught-to for playing a game.  Their political opinions and shenanigans shame their team. If any one of us were to behave so audaciously on our jobs, we’d be canned immediately.  

Take back your/their opinions and agendas. Take back your reality tv. (Or the perception of reality.) Take back the tv that does nothing to feed your soul or fill our life. 

Give me back my 6 o’clock  news. Give me back the way meals were shared around a table, as family. Give me back the ability to see facts and truth played out on the news. 

Give me back my Saturday mornings. Start the day with Davey & Goliath and a little bit of principles and values. Give me back, Mr Mustache and the simplicity and silliness of my childhood. The absolute awe and wonder of puppets and turning a letter of the alphabet into a cartoon. 


I don’t want to be a child again, just have a childlike joy and faith. Simple. Before the world spun out of control. Life. Simple. 
Photo credits:WIFR

I’ve Been Slimed

 

The day after (the election) feels as though I’m in the  sequel to Ghostbusters. For those of you who are not familiar with Ghostbusters 2, allow me a moment to share the CliffNotes version of the storyline…

The ‘Ghostbsters’ find themselves bankrupt after a heap of lawsuits. Lawsuits that came about AFTER the citizens were spared from some big evil marshmallow dude. NYC  officials extend a restraining order so that no more ‘damage’ can happen to their city.

However, problems arise, as they always do, and the Ghostbusters are needed again. The people who cried out for their heads now need their help, [again]. It seems as though some evil is flowing through the veins of the community, infiltrating every crevice of life.

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It is discovered that it is indeed  flowing through the veins of the city. A pink ‘mood” slime is flowing and bubbling beneath NYC. A slime that feeds on negative emotions and anger. As fear and craziness ensues, the slime thrives…

Looking around social media today, I can’t help but feel slimed. Fear and panic, ugliness and broad sweeping beliefs that the sky is falling.  The vacant faces of news correspondents wondering how the heck we got here. Yes, the world has changed overnight. Finger pointing and hatred gets us nowhere.

I’m not one to give in to the panic, at least not today. I’m not sure if it’s having grown up in a politics loving family or the fact I’ve survived so much in my life that I refuse to give one faction that much control. I refuse to give in to knee-jerk reactions, fear and hateful speech.

I may be just one person, but I’m not going give another ‘one person’ that much power. [Unless it’s Jesus himself] I will not bury my head in the sand and hide. I won’t protect myself from impending doom and worry about ‘me’. As in the Ghostbusters movie, good vibes and unity can change the charge of the slime.

Hope is alive. Hope is universal. Hope is unifying. Maybe it’s a cheesy sing-along-song to unite us or maybe it’s the unity found in the  beloved Cubbies winning their first World Series in 108 years. 108 years y’all!!! For 107 years, the mantra has been “maybe next year”. This was the year!!!! But seven days later, the world is going to end.

I’m going to do my part to make a positive stamp on this life. We win, friends. The light always wins. A little flicker of a flame cancels out darkness. Always!

So here’s my a little ditty to get us connected….Love…Love keeps lifting me…

 

 

 

 

 

 

 

From Where I Sit…

It’s weird the things you think about while you’re sitting on the floor of your bathroom. Yes, I also understand that it is strange for me to be sitting on the floor of my bathroom. More about that in a moment, I need to back this story up a bit…

Many months ago, I hadn’t been feeling well. I had this bizarre-o rash on my face, fatigue that would not be tamed and a general ‘not well’ feeling. I landed in the heart hospital with horrific chest pain; three days hooked up to all kinds of beeping things. The diagnosis? Acid Reflux. I knew it was malarkey, but I went to my follow-up appointment with a plan to argue the diagnosis. My fatigue was brushed off as part of my depression. Um, no. Well yes, I battle depression, and no, this wasn’t it. But what was it?

I begged for more lab work, anything for more answers. I was a pest with a purpose; I’d wear them down until they directed me to someone else. Which they did. One visit with a rheumatologist, and we set sail for an answer. I prayed for an ANY answer! I ultimately got an answer, Ankylosing Spondylitis. Yeah, I hadn’t heard of it either. As I researched the autoimmune disease, the more it seemed to fit. As often happens in autoimmune disease patients, if you have one, you have multiple. I was also diagnosed with Fibromyalgia. It all seems to make the other issues, of my medical past, connect. Vitamin B12 & D deficiency, Chronic Kidney Disease. Sheesh, quite the laundry list.

Meanwhile, back on my bathroom floor… As I sit here, I’ve been on 3 different medications over as many months. Insurance got to make the decisions as to what I must ‘try’ before the current medication, Methotrexate. It is categorized as a low-dose chemotherapy/immunosuppressant. Short story, the stuff that destroys your immune system so it quits trying to attack itself. So, here I sit, the day after my Methotrexate. Nausea, fatigue, the battle between wanting to wretch or take a nap. Typically, I’d be stressing about the dust bunnies behind the potty, thinking about how the walls need to be wiped down or how I really never liked this shower curtain. But today, as I sit here, I feel defective, coupled with the guilt of feeling this way. I’m not battling a life-ending disease, today. I’m fighting against being disabled. But that’s exactly how I feel. Dis.Abled.

PERSONAL PHOTO

As I first mentioned, it’s weird the things you think about while you’re sitting on the floor of your bathroom. I’m thinking about my lack of ability vs disability. In this moment, for now, I’m not really able to drive to the pharmacy to get the recommended vaccine [before starting the next phase of my treatment]. It’s only a temporary setback. It’s not as if I am in a wheelchair or anything. That’s being disabled, right?

Imagine driving around your supermarket/pharmacy and see a vehicle pull into the handicapped spot. You expect to see someone get out with a walker or the ramp lowering for their wheelchair. That’s being handicapped, right? Well yeah, it is right. But it isn’t the only right; disability comes in many shapes and sizes. Sure, we’ve all judged the overweight person on a ‘scooter’. “If they weren’t overweight they wouldn’t need that thing”, right? Fess up! We’ve all thought it. When we see someone step out of a vehicle on their own volition, we also think, “They don’t look handicapped.” I’m as guilty as the next guy. And as I sit on my bathroom floor, it’s as if I’ve been literally been dropped on my butt for my way of thinking.

We are so quick to be the judge and jury of someone else’s conditions. We minimize the needs of other’s to maximize our own. While I am the first to acknowledge that there are others who are struggling far worse than me. Yes, I am fortunate, I know that. However, by minimizing our weakness, we also minimize the level of understanding for those around us. I have to be truthful with what I’m struggling so that other’s understand.

My (our) truth is necessary so that we may recognize the truth in others. My truth, there are going to be days that I have to pull-in, lay down and honor my body. It is also my truth to share with others, so you know –the truth – Yes, I’d love to attend your special event! The truth of the matter, I may not have the energy that day. I may be struggling with excruciating pain. I may be concerned about the fact I will have no immune system to fight against a simple bug. Please understand.

The next time you circle the parking lot at Target, and spot someone pulling into a disabled parking spot, remember those of us with invisible illnesses. Those of us that ‘look fine’, even though we are not. The next time you see someone cruising the grocery store aisles in their ‘scooters’, ask if there is something you can reach for them. Reach out, reach up. Reach down, you may just have to help a gal off the bathroom floor!

How Not to Fake an Illness

“..but you don’t look sick.”

Ugh, I can’t begin to count how many times I’ve heard this over the last 5 years. Shortly after MyLove and I were married, we discovered I had Chronic Kidney Disease. Long story short, my kidneys were no longer filtering correctly. Their function has ebbed and flowed like the stock market. Sometimes they have dropped significantly, only to rally and lead me to believe I was in the clear.

In recent months, I’ve felt really rotten. I have battled with healthcare professionals to give me some kind of answer. My stay in the heart hospital was brushed off as acid reflux, my fatigue was simply a side effect of my depression. While this may have been the case for some, I knew better. I know my depression. I’m sort of an expert at it since I’ve battled it since my teens. THIS, this fatigue was not part of my depression. And I’m pretty damn sure that acid reflux does not land you in the heart hospital for THREE days. With a simple eyeroll and swish of a pen, I was dismissed. Just. Like.That.

I begged and pleaded with a nurse practitioner, send me somewhere, anywhere, anyone. I didn’t care, just help me find someone who will truly listen. Cue the harp strings and angelic voices, I found a doctor who not only listened, but had answers. I had a diagnosis, I actually had more than one. [Autoimmune diseases tend to hang out with other autoimmune diseases; you don’t typically just have one.] I have a B12 deficiency, Fibromyalgia and Ankylosing Spondylitis. Stir that all up with some kidney disease and you get a pretty pitiful me.

The fatigue is overwhelming. The pain, constant and persistent. But, I don’t look  sick. Upon closer examination, you may discover the plethora of medications have caused hair loss. MyLove jokes about my eyes clicking* when we’re trying to settle in for a night’s sleep. And sleep, oh that jokester. Some days all I want to do is sleep, and at night, not a wink. I catch a nap occasionally, but it does not recharge my batteries. It’s as if I’m a defective cell phone cord, never fully charging. The wicked humor of my disease, when I’m idle too long the pain is excruciating. If I try to do too much, and I’m run down for days after. A roller coaster that makes you scream in anticipation and nauseous all at the same time.

While I’m busy trying to stay busy, the stuff that is supposed to keep my body held together, is quietly screaming inside. The medication designed to help alleviate the worst of it, makes me more miserable. No, this is indeed how to NOT fake an illness. This is how to fake fine. I don’t want pity or to look pitiful. My pride screams in a voice that resembles mine. I want my normal life back. I want to scream over the wasted years, I squandered my health as if it would always be well.

It’s in the screaming and noise of self-pity that I find my new-normal. I’ve discovered that I am a work-in-progress on MANY chapters of my life. My resume has now been altered, subtracted and added to. I don’t have the course perfectly laid out in front of me. And being the rebel I am, I would have thumbed my nose at the ‘best laid plans’ and go it my own way, anyway.  I’ve met people on a parallel path, it is a beautiful symphony of tears and cheers. We have become fighters for our own health AND our diseases. While I am no expert on the disease, I’m becoming an expert on my diseases. Trust your gut, your inner voice, press in and press on. You are your greatest advocate. Fight for YOU!!!

Life is a journey with rough terrains, smooth sailing, rocking the boat, dancing in the rain… and some days, you just fake it to make it.

 

[* that clicking noise, persistent dry eyes and Uveitis]