The Chronically Hopeful Award

My good friend Kim (who guest posted here for a spell) nominated me for The Chronically Hopeful Award.

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Thank you, Kimmy.

The two of us share a disease. You may have read one of my MANY posts about it…yes, that’s right, fibromyalgia.

Since I really don’t do these award posts anymore, I’m only going to thank the person who nominated me (I did!) and then answer her questions.

Because I’m a lazy rebel with brain fog.

At what age were you diagnosed?

I was 24 years old when I was officially diagnosed with fibro, but looking back on my youth, there were mild symptoms as young as the age of 5. I believe that I was born with it (or maybe it’s Maybelline?)

It didn’t become blaringly obvious until after I gave birth to my daughter in 1997. She was five weeks early due to a condition called gestational hypertension. My labor was induced in order to save both of our lives.

It was a miracle that we both survived. The trauma my body endured triggered the fibromyalgia to really show its fangs. It took me two years to finally find a doctor who knew what in the hell was wrong with me. I cried tears of relief initially, because it meant that I wasn’t crazy, after all.

What were your first thoughts after you received this diagnosis?

Fuck.

Do you think chronically ill people are expected to behave a certain way when they are in public?

Yes, I do.

I look perfectly healthy, unless you’re really paying attention.

I limp. I have awful balance. I walk slowly. I wince in pain most days. I nod off constantly and forget to use my big girl words. My short term (and somewhat long term) memory is full of black holes.

I stare off into space often and I become extremely overwhelmed without much provocation. When that happens, I’ll freak the fuck out and have myself a lovely panic attack.

But most people don’t look that closely at me. They’ve often judged me when I use my handicap parking thingy or when I’m at Walmart on the zippy cart.

They can kiss my flat ass, though. I might have an invisible illness, but it’s as real as global warming.

What is the biggest misconception about your illness?

I know that it shouldn’t irk me, but when people tell me that they hope I feel better, I want to scream “it’s chronic, damn it!”

But I just say thank you, because I’m usually a polite human.

There’s no decent treatment or cure, so I am stuck in this never-ending cycle of good and bad days, just trying to walk the line.

Don’t do too much or don’t do anything at all.

Have you seen any significant strides in the treatment for your illness? 

Sadly, no.

I got tired of bee-bopping around to doctor after doctor. My current physician and I are on the same page with medications. I want two things to help me manage my fibro; pain medication (200 mg of Tramadol a day) and my muscle relaxer (20 mg of Flexeril a day.)

I take Magnesium and B-12 supplements. I’ll use CBD oil sometimes, but I really don’t see what the big fuss is all about.

I also smoke some marihuana now and then, when I can afford to purchase some. I do tend to take breaks from it for months at a time though, within the last decade that I’ve been a “pothead.”

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I found this gem at an antique mall that I went to with my boyfriend a few weeks ago. The place was huge, so he was kind enough to push me in my transport chair.

That pretty much sums up this post.

Again, thank you so much Kim, you’re a true chronic illness warrior and I’m honored to call you my friend.

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Dabbling

I dabble with a couple of little hobbies that bring me some gratification.

I make bracelets. I buy my supplies on Etsy, allowing myself a budget of around $20 a month. (I’m poor.)

They are nothing special. And my numerous attempts to try and sell them…all major fails. It seems that everyone is making these fucking things nowadays, they come a dime a dozen.

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Sparkly.

But, I enjoy it. It’s extremely relaxing and a creative outlet, picking the beads, matching the colors, bling and whatnot. My daughter got me a plastic thingy with two drawers to hold all of my stuff. Ironically, I made her a custom one and as she was removing it yesterday, it fucking broke in her car. She tried to gather up all of the beads, but some of them rolled under her seat.

I told her I was sorry and that maybe I need to buy better quality stretchy cord.

I watch YouTube videos for ideas, patterns and how to tie the correct knots. Then I use some super glue for extra hold, which obviously doesn’t always work. (My daughter is stronger than she looks, perhaps.)

The second hobby I dabble with is DIY home improvement. I’ve installed the flooring in my living room before and after the flood we had back on New Years Eve Eve to save some extra money.

The check that the utility company paid me due to accidentally breaking the waterline outside of my condo only went so far, figuring that I had to replace my dryer, some furniture and other things that were ruined. I used the rest of it to get nineteen extractions and dentures.

I was getting really tired of toothaches, crumbling teeth and abscesses.

I’m also currently still finishing my upstairs hallway floor, since my oldest dog Maggie is having issues holding her water at night. For some reason, she decided that the hallway was the perfect place to relieve herself.

You can only clean a carpet so many times before the smell of dog pee makes your eyes water.

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My goodness, that’s pungent.

She has to wear a dog diaper before bedtime now. She’s going on 12 years old coming up this August, so I don’t scold her, because she just can’t help it.

I’m honestly thinking about selling my condo, though. This place holds so many bad memories for me and my daughter. I haven’t officially decided yet, but until I do, we’ve been trying to redecorate on a budget and fix it up the best we can.

Let’s see, what else? I plugged a black ant hole up in my living room drywall (I hate those bastards) with some damp Magic Eraser after I sprayed the point of entry liberally with some Raid.

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I could probably insulate my walls with this shit.

My kid even painted our upstairs bathroom, a lovely mauve color. I’m planning on cleaning the shower tiles with a toothbrush and applying some peel/stick tub caulk so it’s more pleasant for us when we take a poo or bath.

I’m quite adventurous, I know. I often overdo it and my foe fibromyalgia comes to remind me that I’m a stubborn dork.

My favorite hobby that I dabble with continues to be writing/blogging.

I swear, one of these days I’m going to write that book.

Right after I make one more bracelet and stain my kitchen cabinets.

A Funky Disease

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One day, many years ago, I had a premonition of my future with fibromyalgia.

I was working as a dietary aid at a nursing home, washing my dishes from breakfast. That particular morning, I was so exhausted, grumpy and my body hurt terribly. Each plate seemed to weigh like a ton and all I wanted to do was go home so that I could pop a Tylenol 800 mg (that’s what my doctor gave me back then) and sleep.

I was only 28 years old and a newly single mother, trying to support my young daughter. I had been diagnosed with fibro at the age of 24, so it was all relatively new to me and only played a minor role in my life, an occasional pain in my ass. It wasn’t something that I ever disclosed to my employers, because I figured that they wouldn’t hire me if they knew that I had a funky, difficult to spell disease.

I finally finished my dishes (thank God!) and then grabbed myself a cup of coffee so I could take my smoke break. (Although I quit, I still want a damn cigarette sometimes!)

I was sitting there resting my weary bones when it hit me like a tidal wave of foreboding; what if someday, I couldn’t work anymore? What if this complicated and invisible illness became worse as I aged?

What would I fucking do??

A coworker came and plopped down next to me, lighting her cigarette and then exhaling dramatically like she did on a daily basis. She was much older than me and her personality was always over the top.

“What a morning!!”

I nodded, distracted by my own thoughts.

“What’s wrong?”

I couldn’t tell her the truth, because I knew that she’d spread the news around like cow manure on a cornfield, so I just said that I was having a really bad day.

“Yeah, we all have those. Maybe you’re coming down with something?”

“Maybe.”


Then at the age of 37, the fibromyalgia and my mental illnesses finally caught up with me. I had to stop working as a daycare cook (fish-sticks, anyone?) and apply fight for disability. I miss being able to earn my own living and being home each day gets old really quick, especially when you feel like pigshit on pumpernickel bread.

Maybe I just pushed myself too hard or I didn’t take my disease(s) seriously enough.

But there’s no sense in going back, is there? The what ifs in life are what do us the most harm.

Have you ever had a premonition of your future? If so, did it end up becoming true?