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.”

marihuana

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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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?

Fibromyalgia & Suicide

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Add 10% higher risk of suicide.


I read a post on The Mighty yesterday that really disturbed me. The topic was about how fibromyalgia and mental illness coincide, which I’ve already been aware of due to my own personal experiences.

But the part of the article that bothered me the most was the statement that “Fibro sufferers commit suicide at a rate of 10 times that of the general population, according to a report in Psychology Today.”

Just fucking wonderful.

It upset me so much, I got the shivers after I read it and then shared the link on Facebook, which only a handful of people reacted to, since it’s a taboo topic that is mostly avoided.

I told my boyfriend (he’s fully aware of my mental health history) and I asked him to read the post himself. As usual, the scary “S” word makes people uncomfortable. It happens every single time.

Even my beautiful mother, who always fought for and fully supported me while she was still alive, hated to say the word itself.

It’s not a pleasant topic, is it? No, it most certainty is not. Yet every 40 seconds, someone on this planet decides to end their pain and leave this brutal, yet wonderful world behind. It’s the truth and it’s happening. There’s an excellent chance that each one of us will be touched by it in one way or another.

Steven hadn’t really said much after he read it, so on the way to our Thursday evening couples bowling league, I asked him what his thoughts were.

“I don’t really know what to say,” he replied quietly.

Ah yes, ding ding.

“Yeah well, most people don’t,” I said knowingly, with a twist of snark in my comeback martini, on the defense.

Then I sighed, feeling quite defeated.

“It scares the fucking shit out of me,” I revealed, trying to honestly explain my feelings further. “It’s scary. Actually, it’s fucking terrifying. And I’m so afraid that it’ll happen again. I’ll live with that fear for the rest of my life.”

I noticed him squeezing the steering wheel a bit more tightly than normal.

“I might not understand it, but I’ll never run away with my tale between my legs.”

I made the noise I make when someone mentions asshat, a sort of disgusted snort.

“It didn’t help that you had someone constantly putting you down and abusing you, treating you like a worthless cripple and saying that maybe you should’ve just done it, after all! The fucking dirt bag.”

Another snort from me.

“I won’t let anything like that happen to you, not on my watch. I’ll do everything in my power, honey.”

I smiled and patted his leg, then left it there. He took his hand and started stroking my hair. We didn’t talk for a few minutes. I just closed my eyes and enjoyed the sensation of his strong fingers comforting me and listened to the windshield wipers whisking away the chilly rain.

“I want you to be able to talk to me about it, to tell me when you start feeling like that,” he said. “That way, we can get you some help.”

I nodded and kissed his cheek. “Thanks for rubbing my head, that felt nice.”

“Anytime, my love.”


As most of you already know, my soon to be ex-husband (hooray!) decided to stick his dick in the mashed potatoes instead of coming to the ER to be with me on that shitty July day in 2015 when I tried to overdose on my pain pills.

My mother was the only one there and she was already beginning to show symptoms of her “mystery” illness. Now we know what it was that took her from us, an extremely rare medical condition. (A little too late, but that’s for another post.)

My boyfriend hates to discuss asshat and I don’t blame him, but I felt from the beginning that he needed to know my prior background in order to help him understand me better. We’ve been together for over a year now and the last thing I want is for him to someday exclaim “I didn’t sign up for this bullshit!”

And now that my precious mother has passed on, I hope that if I ever lose my battle with my suicidal thoughts again, I’ll have Steven to love and support me.

If I really have a 10% higher risk of suicide because I have fibromyalgia, then I better start praying hard and hope that I have a few compassionate people in my life, beginning with the man who plays with my hair.