Dory and Steve and Me Being Pissy!

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— 1 —

It has been a couple of weeks, so I’ll update you first on John’s job at the movie theater, which he really does enjoy.  Nothing too crazy has been found in the theaters during cleanup (thank goodness), except a mostly empty baggie of what John referred to as “the Devil’s lettuce”. I have no idea where he picked that one up, but it was new to me.  I keep picturing a cartoon devil looking sadly at his wedge of iceberg lettuce. John took me to see Finding Dory today, and it was wonderful. I should watch more children’s movies, especially Disney/Pixar ones. During the previews I was excited to see they are remaking Pete’s Dragon. I loved the cartoon version, so I’m anxiously awaiting what the wonders of CGI will bring!

— 2 —

stephen king
I live in Louisville, KY, so our city honored the passing of one of the most well-known figures in the world the Friday after he passed away (Muhammad Ali). Native Louisvillians know what to do on days like that; when roads are blocked, businesses closed, hotels booked solid, and parts of the city off-limits to anyone who doesn’t live there or can’t afford the astronomical prices to be there . . . we stay home. But that Sunday, with 2,400 of my closest friends, I saw Stephen King. He came on stage in an old T-shirt and baggy jeans and talked to all of us as if we were in his living room. Meanwhile, an unexpected storm swirled around us, with thunder, lightning, and pelting rain that was probably sent by Vincent Price himself 🙂 The walking, standing, and sitting required to see him put me in bed, unable even to read his newest book, for two days. But it was 100% worth it!

— 3 —

Of course one of those days was the best hair day I’ve had in years. I noticed it as I passed by a mirror in the bathroom. It’s a shame there has no one but the dogs to appreciate it. After all, I know full well they were thinking, “So what, the hair on the top of your head looks nice. Big whoop. My entire body is covered with fur and I look fabulous!”
saminda

— 4 —

I limped in to see my chiropractor the first day I could walk as far as my car. He has such a knack for expressing medical terms in everyday analogies.  When I told him about sitting, standing, and walking much more than I was able and having spent the last two days in bed he said immediately, “It was the standing more than anything. Does your cane have a seat you can use to sit?” I admitted it didn’t, and he explained that when I’d been standing even though I’d shifted positions frequently gravity was compressing my entire spinal column. When he said that I laughingly admitted that I hadn’t weighed myself since the event, because I felt so much heavier. It felt as though I had double the force of gravity pulling me down, and I was surprised my wood floors didn’t crack with every step I took. I left that day feeling much lighter 🙂

— 5 —

I want to have a Nerium Twitter Party soon, but even though I’ve tweeted it out daily and put it on FB every other day I haven’t had a single response. I even logged in as my husband to make sure the link and survey were working. I want to give away the prizes people WANT, not just what I happen to have on hand. So if you’re at all interested in anti-aging for the face or body, or a brain supplement, please browse my Nerium site and fill out my survey about what you would most like to win. I have 900 Twitter followers, so if I can’t get at least 50 people interested enough in a Twitter Party to fill out a survey then it’s probably time for me to cull the herd drastically and try a different approach.

— 6 —

Any moms out there who didn’t get a Mother’s Day card, call, or at least a freakin’ text or FB post from one of their children? How about Father’s Day? Any dads feeling left out, unloved, unappreciated? My parents divorced when I was twelve and I think I always sent him a card and/or called him. I hope I did. I know when I was older I made sure to include him in everything, or at least offer to include him. It’s hard with blended families. But Michael and I will have been married 30 years this summer. And Michael is the best father any boy could have. I don’t understand it.

— 7 —

I went to my second meeting of my local Chronic Pain Support Group. I’d been hesitant, because everyone there seemed to have Fibromyalgia, which I don’t know much about. But this time we discussed “dry needling” (which got me through my eldest son’s wedding without collapsing) and then everyone’s diseases and symptomatology. I was not the only person there without Fibro (thank goodness!) but could relate to many more of the symptoms than I thought. My hyper-acute sense of smell, for example. Everything I use must be unscented (try finding unscented shampoo-just try!) and waiting rooms at doctor’s offices are torture chambers. Cigarette smoke, perfume, halitosis, body odor. I buy handkerchiefs, soak them in vinegar, and dry them to hold to my nose. I just pretend I have allergies. It’s the Ohio Valley – if you don’t have allergies you haven’t lived here long enough!

Then the Nurse Practitioner at my Pain Management doc’s office (because people with chronic pain are too “high-risk” for their Internal Medicine docs to treat and after a few years don’t bring in enough money to be seen by a doctor or even fill out a “symptoms today” form that the ARNP won’t look at) told me, “Don’t take the Hydrocodone until you need it. You’ll develop a tolerance to it.” I just stared at her. If she’d even glanced at my chart she’d have seen I’ve been fighting this battle since 2009, that her employer was the fourth pain management doctor I’d seen because I’d fired the other three (two have since been shut down), and that her own boss had labelled me “tried all conservative therapy, has had all indicated surgeries and procedures. Failed neck. Failed back.” I am never without pain of at least 6/10. If she has a witch doctor I’d be happy to sit while he danced around me with freshly be-headed chickens. Otherwise I’d prefer not to pay $35 once a month to hear her uninformed opinion.

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How Do You Define Yourself? (Final)

OK, here’s where the rubber meets the road. You’ve got my background and why I feel a need to define myself, and you’ve got all the circumstances I don’t want to define me. But lately  God has been almost literally bopping me on the head with a bat, insisting that it’s time to think and pray and do something to redefine myself and set my course for the rest of my life.

The first time was my first visit ever to a Chronic Pain Support Group. Better late than never, right? Everyone had known each other for years (or so it seemed). There were two other newbies besides me, and we all introduced ourselves and were greeted warmly before the guest speaker started.  Afterwards everyone stayed and talked for a while, and it quickly became clear that this wasn’t a misery loves company group of people. One woman identified herself as “the political one”, and I could 100% see myself spending time with her, educating the public, making calls, and sending emails about laws that need to be passed to protect hard-working people from some of the experiences I suffered. Another woman had suffered with Fibromyalgia for decades before being diagnosed, and now nearly 50% of her extended family has been diagnosed.  Her passion is early detection of the disease, and identification of those at risk. This is a powerful, positive group of people who have much loftier health goals than just “making it through each day”, which has been my only goal for a really long time.

Then I attended my usual Bariatric Surgery Support Group. (I had a gastric sleeve last August, hoping weight loss would help my low back pain – no luck so far). Our official topic for the day was Relationships, but we ended up talking about the frustration of how our culture defines and discriminates overweight people, and that it often continues even after the weight is lost. Then what should pop out of my mouth?  “Yes, our culture has some huge flaws. But the place to start making changes is how we define ourselves. How did we introduce ourselves today? By telling our first names, what surgery we’d had, and how many pounds we’d lost. We have to see ourselves as more than numbers on a scale or the size on a tag before we can expect anyone else to do so!” Yep, my filter is apparently permanently set in the Off position.

Then I went to see Stephen King speak (totally worth the incredible pain that night and the two days of bedrest afterwards!!) and the first thing he said was that he was actually three different people: the guy who took out the trash and picked up the dog poop, the guy who wrote all this crazy stuff and never knew how his books were going to end ahead of time, and the person brave enough to stand in front of a crowd of 2,400 people and talk.

The final straw was finishing a book by Lisa Wingate – part of the Moses Lake series. Yes, it’s romance, not literary fiction, but the clear theme of the book was defining oneself. So that’s what I’m up to now. I’m gathering all these scattered aspects of myself and deciding who I’m going to be for the rest of my life. And it’s kind of exciting! How about you? How do you define yourself and how has that changed over your lifetime? Does your definition need a closer inspection?

How Do You Define Yourself? Part II

Sorry for the long back story dump yesterday, but I wanted to illustrate how clearly defined my identity was (especially to myself) until I was forty-five. That Spring I had my third and fourth cervical spine surgeries. They left me with a severely limited range of motion and constant moderately severe pain – even with muscle relaxers and narcotic pain medications. I couldn’t return to work – any kind of work. If I spent more than thirty minutes sitting, standing, or walking during the course of a day I’d pay for it with horrific pain for the rest of the day, a sleepless night, and at least one full day in bed recovering.

I wasn’t a nurse, a problem-solver, or a breadwinner. I spent every clear-minded moment fighting to get the short-term, then long-term disability benefits I’d paid an insurance company premiums on my entire adult life. One of the many things I learned was that according to federal law no company has to pay anyone longer than two years, so matter how sick they are or how much documented proof of physical disability they have. And it often takes longer than two years to even get a disability hearing, let alone a ruling. We were in such dire financial straits I couldn’t have afforded to put gas in a car to go visit a friend or go to church even if I’d had a car available (which I didn’t). When my application for disability was denied I knew that we’d soon be bankrupt and homeless, and that I’d never be more than a physical and financial burden to my family for the rest of my life. I attempted suicide.

I came out the other side of that deep, dark ocean of depression, but not without so many medical bills that bankruptcy was sooner rather than later. There was already a date set for the auction of our home on the courthouse steps when we finally qualified for a program to help us keep our home. We qualified for food stamps, and I began the long road of applying for disability a second time. I’m still waiting for a hearing date. It could be a year or more away and they are only required to give me 20 days notice. If we move out of the county I’d have to start from scratch.

UGH, another long post. I guess there will be a Part III tomorrow, because I’m still not at the positive stuff. At least I’ve explained things that are part of my life but I will not let define me: pain, isolation, shame, depression, bankruptcy, disability, or homelessness. Positive stuff tomorrow, I swear!

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