Fibromyalgia · House and Home

List: Books I Read in 2016

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I don’t read near as much as I did when I was younger. Partly because adulthood means more time working and less time “hobbying” but also because fibromyalgia and its accompanying symptoms can make reading a struggle. And who needs more struggle, right?

Anyway, these are the books I got around to finishing this year. Complete with my Amazon referral links.

The New Jim Crow:Mass Incarceration in the Age of Colorblindness by Michelle Alexander

“This book directly challenges the notion that the election of Barack Obama signals a new era of colorblindness. With dazzling candor, legal scholar Michelle Alexander argues that “we have not ended racial caste in America; we have merely redesigned it.”

If you think everyone in jail belongs there, you are terribly misguided. If you don’t believe we disproportionately imprison people of color, you’re wrapping your arms around a fact-free narrative. This book will wake you up.


Brooklyn by Colm Tobin

“Colm Tóibín’s New York Times bestselling novel—now an acclaimed film starring Saoirse Ronan and Jim Broadbent nominated for four Academy Awards including Best Picture—is ‘a moving, deeply satisfying read’ (Entertainment Weekly) about a young Irish immigrant in Brooklyn in the early 1950s.”

I just thought I’d read the book to see what all the fuss was about. It’s a decent read.


The Everything Box by Richard Kadrey

“Reminiscent of the edgy, offbeat humor of Chris Moore and Matt Ruff…a dark and humorous story involving a doomsday gizmo, a horde of baddies determined to possess its power, and a clever thief who must steal it back . . . again and again.”

This was a fun and easy read. I was even able to crank up the font size on my Kindle and read it with a migraine. Nice distraction from the pain, plus a few good chuckles.


The Perks of Being a Wallflower by Stephen Chbosky

“Read the cult-favorite coming of age story that takes a sometimes heartbreaking, often hysterical, and always honest look at high school in all its glory. Also a major motion picture starring Logan Lerman and Emma Watson, The Perks of Being a Wallflower is a funny, touching, and haunting modern classic.”

I didn’t hate it. I basically read this just to be in the know; it gets referenced quite a bit in my social media circles. It was okay, but it didn’t really grip me. Still, I see what others appreciate in it.


Landline by Rainbow Rowell

“Landline asks if two people are ever truly on the same path, or whether love just means finding someone who will keep meeting you halfway, no matter where you end up.”

I’m a fan of Rainbow and her female characters. This book kind of put me in the mood for the holidays with it’s Christmas timeline, too. Bonus!


Eleanor & Park by Rainbow Rowell

Eleanor & Park reminded me not just what it’s like to be young and in love with a girl, but also what it’s like to be young and in love with a book.”-John Green, The New York Times Book Review

Have I ever mentioned that I used to work for John Green when I was living in Indianapolis and attending IUPUI? If he recommends a book, I’m going to look into it…eventually.


The Nest by Cynthia D’Aprix Sweeney

“Every family has its problems. But even among the most troubled, the Plumb family stands out as spectacularly dysfunctional. Years of simmering tensions finally reach a breaking point on an unseasonably cold afternoon in New York City as Melody, Beatrice, and Jack Plumb gather to confront their charismatic and reckless older brother, Leo, freshly released from rehab.”

I picked this out because it was in my OverDrive recommendations and I didn’t have to get on the waitlist to check it out from my local library on Kindle. Not disappointed.


The Fibro Manual by Ginerva Liptan, M.D.

“If you suffer from fibromyalgia and are struggling to get help from your doctor, you’re far from alone…. In this unique resource, Ginevra Liptan, M.D., shares a cutting-edge new approach that goes far beyond mainstream medical knowledge to produce dramatic symptom improvement.”

There are a couple of other fibromyalgia reads on this list. If you only read one of them, this is definitely the one I recommend.


Beyond Belief by Jenna Miscavige Hill

Jenna Miscavige Hill, niece of Church of Scientology leader David Miscavige, was raised as a Scientologist but left the controversial religion in 2005. In Beyond Belief, she shares her true story of life inside the upper ranks of the sect, details her experiences as a member Sea Org—the church’s highest ministry, speaks of her “disconnection” from family outside of the organization, and tells the story of her ultimate escape.”

Being born into a cult. Just…damn. Excellent read.


The Fatigue and Fibromyalgia Solution by Jacob Teitelbaum, M.D.

This book discusses research and advances in treating chronic fatigue syndrome, fibromyalgia, and the baffling, often dismissed symptoms associated with these debilitating conditions.”

I read this book after Liptan’s and don’t feel like it offered much new or different info. I think if I had read it first, might have preferred it. Hard to say though. No do-overs!


Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain by Tami Stackelhouse

This is the self-helpiest of the fibromyalgia-related books I read. I skimmed so much of it because it just wasn’t doing it for me. However, if you’re into the life-coaching scene and don’t mind reading obvious statements wrapped in positive speak, this might be encouraging to you.

Read what you want. Get the help you need.


Going Clear: Scientology, Hollywood, and the Prison of Belief by Lawrence Wright

“Lawrence Wright—armed with his investigative talents, years of archival research, and more than two hundred personal interviews with current and former Scientologists—uncovers the inner workings of the church.”

Horror movies and stories have nothing on Scientology in the nightmare department. This books is fascinating. I picked it up after watching the HBO documentary of the same name.

Fibromyalgia · House and Home

An Update of Sorts

tree.PNGI had a fibro flare (or something) the week before Thanksgiving. Then on the Tuesday before Thanksgiving, I fell. I smacked the back of my head on the hardwood floor in the bedroom and landed rather spectacularly on my left elbow.

Then on the Friday after Thanksgiving I had a mild fever and was achy all over. Today, I have a sore throat, plugged ears, a runny and sneezy nose, and continued aches in addition to my usual chronic pain.

I’m grumpy, but Boomer seems to feel sorry for me and has taken to snuggling me more than usual.

***

While my parents were here for the holiday, my mom helped by shopping for and assembling our pre-lit Christmas tree. We also have fake candles in our front windows, and snowmen on top of our upright piano. It’s a cozy time to feel sick, at least. There’s more decorating that could be done, but will only happen if I’m feeling up to it. Fingers crossed.

Fibromyalgia · House and Home

Countdown to Meltdown

I got the first quote for the gutter work and the bathroom remodel yesterday, and then I had to open my Calm app and meditate for ten minutes to stop the building anxiety.

To answer your questions:

  1. Yes, this is just the first quote.
  2. No, I am not obligated to go with this particular company.
  3. No, I didn’t really think we would be able to afford an accessibility remodel of our bathroom anyway. (But I did let myself hope.)

Thing is, anxiety doesn’t stop to ask questions and then respond reasonably based on the information provided. That’s why I had to diffuse the situation with a few minutes of meditation.

meltdownMoney is without a doubt one of my anxiety triggers. I’m not going to rehash the details of the medical bills I’m ignoring or let myself relive the nightmares of trying to sell The Condominium from Hell™, but money stress gets to me in a very painful way.

So when I saw the dollar signs followed by numbers WITH COMMAS, it was fight or flight. And since my fight and flight both seem to be broken right now, the result was what I like to call Countdown to Meltdown.

***

We can keep using our 1963 bathroom for the foreseeable future. If the day comes that I just cannot step in or out of the bathtub, there are more affordable (if a little bit janky) options available. I’ll deal.

However, the gutter and rotting fascia is a problem that needs a solution before it becomes a ginormous problem in need of an even bigger, more expensive solution. I’ve been trying to find other companies to provide a quote on the work without luck so far.

The problems with finding additional service providers:

  • Fibro fog makes it hard for me to speak on the phone. I hated the phone before I was sick.
  • Web searches for residential construction companies don’t turn up much in the way of results. The one company I did find is the one that provided the aforementioned quote.
  • I’ve been pretty much sick since we moved here. We don’t really have a huge network of people to ask for recommendations.

Not that I’ve given up. I’m just not looking forward to the work I’ve got ahead of me.

House and Home

Inspirational (Bathroom) Quotes

bathroomThursday afternoon we met with representatives from a local construction company. We’re getting quotes for repairing rotting fascia and soffits and bad gutters. In the next year or so, it will be imperative that we do something to remedy those problems.

Since we were having them come out to the house, we also had them look at our 1960s bathroom. It’d be safer for me not to step over the sides of a tub, so priority uno would be a walk-in shower. But there are other issues to deal with if time and money allow, including a cracked toilet tank, a rusting sink, gross shower doors, and two lights and a bathroom fan all on the same switch. Oh, and the bathroom fan is so loud we had to yell our questions and replies.

“HOW DO YOU FEEL ABOUT THIS TILE?”

“THE WHAT?”

“THE TILE. DO YOU WANT TO KEEP IT?”

***

Yes, getting a walk-in shower for my own safety makes me feel old and infirm. But I’m finally coming around to accepting my fibromyalgia. It’s time to look at ways to make my life easier, not stubbornly insist that I should be able to do things like normal people.

“I have mobility issues,” I told them when trying to explain why I wanted something with the lowest sides possible. (“Mobility issues” is my new go-to for explaining to people that I can’t do jack shit.)

I’m glad I fessed up, though, because they had ideas. Ideas for grab bars and low-maintenance materials.

“Would a corner seat or something be helpful?”

My god, that’s brilliant. “OH! I would love to have a built-in bench at the back of the shower,” I said. While the woman drew it in on a piece of graph paper, I imagined ceremonially going all Office Space printer scene on my drugstore shower chair.

Last night I went to sleep dreaming of a new bathroom, knowing that even if we find the money to get it done it won’t happen until next construction season.

House and Home

Our First Major House Repair

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On today’s agenda is a visit from a general contractor to tell us how much it’s going to cost us to replace our gutters, fascia, and soffits.

We love our little home, but there are spots on the front of the house where the gutter is hanging on by a single, rotten wood fiber. Surprisingly, I am not currently battling anxiety over the situation. It’s bad, but doesn’t seem overwhelming.

Yet.

Fibromyalgia · House and Home

BREAKING: I Went Outside and Did a Thing

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Yesterday we took our Lab and Wolfhound mix, Boomer, to the Urbana Dog Park. Before I talk too much about our experience, I want to take a second to recommend the bejeezus out of the dog park to any local readers. It’s gigantic. The dogs are a hoot. The owners are friendly.

***

Our backyard is only partially fenced, so Boomer has to be leashed when we take him out. And even though a co-worker highly recommended the local dog park and we’d discussed taking Boomer many times, we had lots of legitimate reasons for not getting around to it. Most of them are related to our health; between my fibro and his psoriatic arthritis, we make a real pair!

But we were also waiting for Boomer to respond better to our commands.

“Want to put on a hat and go to the dog park with us?” Dan asked. Yesterday’s weather was gorgeous. So gorgeous that we had the windows open all day. No question it was the perfect day to give it a try.

“Um,” I hesitated, “Sure, but I need a little time to psych myself up.”

Leaving the house is a serious undertaking for me. I know I should do it more, but it is so hard. First of all, it requires putting on real clothes, including a bra. Bra straps are torturous for me, because they put pressure on trigger points at the base of my neck, shoulders, and back.

Going out also requires standing and walking—activities most people don’t consider actual activities so much as ways to complete actual activities like going to a concert, putting in eight hours at work, or taking the kids to a pool party.

For me, however, standing, walking, and physical exertion instantly lead to vertigo. I’ve taken some pretty hard falls as a result, and those falls have always led to all-over pain flare-ups and a healthy fear of walking around.

Three minutes later, Dan was ready to go.

“Now?” I said. Hoping for more time. “I just ate.” (I should probably also mention that eating slows me down even more. The only thing I can figure is that all of my body’s limited energy is used for digestion, so muscle coordination and strength are out the window.)

“Yeah, now.”

***

Poor Dan had to keep Boomer in line and deal with me hanging on his arm. Uneven ground is my nemesis. (Note to self: it’s probably time to suck it up and get a walking cane.) Fortunately, the 10-acre dog park has lovely benches nestled under giant, shady trees.

While the guys ran off to play, I watched dozens of dogs having the time of their life. One little Aussie shepherd mix approached me with a red Frisbee in her mouth. Her owner was chatting with someone a few feet away. She dropped the Frisbee at my feet and gave me a pleading look. So I threw it.

It didn’t go far, but she didn’t seem to mind. She chased after it and came back, deliberately dropping it at my feet after each retrieval. Before long, a slightly overweight retriever brought me a tennis ball, and half a dozen other dogs came and offered me a chance to give them a good scratch behind the ears.

My shoulder is sore from throwing dog toys, but it was so much fun. Not only was I accepted and included despite my shortcomings, but Boomer had the time of his life. In fact, Dan went to the rec center today to purchase the annual membership. No more one-day passes for us!

House and Home

Mizzy Loves Company

About, oh, a week or so ago, I asked Dan if he was cool with us being pet foster parents.

At least I like to think I asked for his input. I might have made him feel like he didn’t really have much choice in the matter, even if that wasn’t actually my intention.

Fortunately, he and I are on the same page when it comes to pets. We love animals, and he knows I am especially soft when it comes to senior dogs and cats. That’s the short version of how we came to be fosters for Hospice Hearts, and how we ended up welcoming Mizzy (pictured above) into our home.

Our cat wasn’t particularly enthusiastic that we let a thirteen-year-old rat terrier join our ranks. She smelled the newcomer suspiciously and hissed at her. Our dog, however, was adorably smitten with the tiny creature, guiding her around the house,  running to her aid at any sign of distress, and checking on her constantly.

***

Truth be told, until Tuesday when Mizzy arrived, I wouldn’t have described myself as a lap dog type of person. My experience with small breeds mostly involved shoelace chewing, nonstop frenetic play, and incessantly shrill yipping. But Mizzy, she was different. She was old. She was sweet. She was quiet.

Hospice Hearts didn’t have much information about her, either. All we really knew was that her owner had entered a nursing home and the owner’s family had surrendered her to a shelter. Mizzy was hard of hearing and mostly blind due to cataracts. She was missing several teeth, and—bless her tiny, punkin heart—had the breath of a dragon with gingivitis.

She was small and frightened. In an unfamiliar house with weird smells, the only way to keep Mizzy from shaking was to hold her and pet her. So that’s just what I did. We bonded in the first ten seconds. She sighed a tired puppy sigh, and fell asleep in my lap. She slept beside me in bed.

***

The first 24 hours went smoothly enough, but on the second night Mizzy had a seizure at 2 a.m. Then over the course of the next 12 hours, she had three more. We made arrangements to get her to the vet, and as we were about to place her in the pet carrier, she had another.

Yesterday evening, Mizzy crossed the rainbow bridge.

And. I. Lost. My. Shit.

Even Dan was surprised how hard I took the news. I mean, our goal in being fosters wasn’t to keep her, you know? We were working under the assumption that we would provide her with some TLC until she went to a new forever home. But when she needed more from me, I gave it. And she instantly went from being my house guest to being my sweet little Mizzy.

I cried so hard I couldn’t really talk. My face got snotty. And when I was so dehydrated I didn’t have any tears left, I started sucking in air with a quivery lip. Like a toddler in the throes of a tantrum.

***

“Are you sure you’re cut out for this fostering thing?” Dan asked me, concerned.

“Yes!” I answered, a little defensively. “That Mizzy died so soon after she entered foster care was just one of those things. It was unpredictable. It won’t end this way every time.”

“I know, it’s just hard to see you so shaken up.”

Even if I knew for certain that every foster would end so tragically, I’d still volunteer. Being sad isn’t the worst thing in the world by a long shot. But opening your home to a creature in need just might be the best thing in the world.


Hospice Hearts is an all-volunteer rescue based in Champaign-Urbana, serving senior cats and dogs whose owners are no longer able to care for them due to nursing home admission, serious illness, or death. Support Hospice hearts on GoFundMe.