Cranky Fibro Girl Harnessing the healing power of snark Tue, 25 Oct 2016 16:28:20 +0000 en-US hourly 1 Good Words Tue, 25 Oct 2016 16:28:20 +0000 Every Morning All Over Again

Only the world guides me.
Weather pushes, or when it entices
I follow. Some kind of magnetism
Turns me when I am walking
In the woods with no intentions.

There are leadings without any
Reason, but they attract;
If I find there is nothing to gain
From them, I still follow—their power
Is the power of the surrounding world.

But things that promise, or those
That will serve my purposes—
they interfere with the pure wind
From nowhere that sustains a kite,
Or a gull, or a free spirit.

So, afloat again every morning,
I find the current: all the best
Rivers have secret channels that
You have to find by whispering
Like this, and then hear them and follow.

— William Stafford

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Product Review: The Patient’s Playbook by Leslie Michelson Tue, 18 Oct 2016 19:16:14 +0000 I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

If you’re like me, you’ve read a lot of different things over the course of your illness: leaflets and patient handouts from your doctor(s); websites and online articles; and of course, books. These days we have unprecedented access to pretty much all the information we could ever hope to find, and that’s wonderful in so many ways, especially for people like me who are frequently stuck at home due to chronic pain and illness. But the downside to living in The Information Age is that it doesn’t take much to drown in The Information Sea. The Patient’s Playbook, by Leslie Michelson, offers a knowledgeable, reassuring guide to help patients and their caregivers navigate the frequently overwhelming waters of our health care system.

The book is divided into three main sections. The first section lays out the steps a person can take to become more proactive about their own healthcare right now, before any serious health crisis occurs. The remaining two sections describe the steps to take and the resources to explore when you’ve facing a serious illness and need to find the best specialists and treatments for your situation.

This book found its way to me at a very opportune time, as my husband and I have just moved to a new state and I need to find a brand new medical support team. With a few exceptions I’ve always been fortunate to have had good medical care in the past, but I did find my doctors in a very haphazard way, just adding a new doctor to the mix every time another health crisis popped up. I never had any one physician coordinating my care. But now I have an opportunity to start fresh when it comes to my healthcare, and I’m hoping that I can use the tools described in The Patient’s Playbook to help me learn how to become more skilled in putting together my medical team.

I will confess that I did feel overloaded at times while reading this book. There is just SO much information in it that at times it triggered the same kind of overwhelm it hopes to prevent. If you’re in a position to be reading this while you’re at your-version-of-healthy, I definitely recommend consuming the information in small doses. I’m currently working on one-third of Step Three: obtaining copies of all my medical records. But little steps make a difference; before reading this book, not only did it never occur to me that I could request copies of my records for myself, it never occurred to me that I should. Now I know differently.

Another things that bugged me about the book was the kind of stories the author told to illustrate his points. It’s not surprising that he includes many stories about people who suffered through years of bad care and misdiagnoses before finally turning to the strategies laid out in the book, which led the patient to the perfect doctor, who found the perfect clue/piece of information, which led to the perfect treatment, that led to a major recovery, if not total cure. I don’t doubt any of the stories, and they’re certainly dramatic. But there aren’t any stories about patients like me, who do everything we humanly can to manage our conditions but never find a magic cure. I had to catch myself a lot while I was reading the book because I’d frequently start mentally and emotionally flogging myself or telling myself I was a failure because I haven’t yet figured out how not to be sick. Or I’d start blaming myself for my illness.

All in all, there are many helpful things I’m taking away from the book. Like learning how to treat myself as someone who deserves really good medical care. And getting better at advocating for myself. But I’m also following the “take what works, leave the rest” rule; there are things I know I’m never going to do, like spending enormous amounts of time reading medical journals for the latest papers published on my illness. Not gonna happen.

I can definitely recommend The Patient’s Playbook as a helpful resource to add to your toolkit. It’s been a long time since I read a book that offered any new information that I haven’t already read a million times before. But it’s not a magic bullet. As we chronic illness patients know all too well, sometimes you do everything you humanly can, and the best outcome you get is just being able to maintain the status quo. But sometimes, if we’re lucky, that can be enough.

If you’d like to check out The Patient’s Playbook, it releases in paperback today, and can be found here on Amazon.

Visit The Patient’s Playbook website for additional resources and information.

Visit Leslie Michelson’s Facebook author page here.


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You Know Your New Driver’s License Photo Really Is THAT Bad Fri, 14 Oct 2016 14:36:36 +0000 …when you hand it to your mother, the woman who gave you life, who dedicated herself to raising you, who, when at age 40 you had to get bifocals offered to get a pair of “sympathy” bifocals herself just so you wouldn’t feel all alone, the woman who would crawl over broken glass just to bring you one single drop of water, takes it, looks at it for a very long moment and then asks quietly, “This is the one they’re using?”

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Good Words Wed, 12 Oct 2016 20:09:33 +0000 Stardust

If you came to me

with a face I have not seen,

with a voice I have never heard,

I would still know you.

Even if centuries separated us,

I would still feel you.

Somewhere between the sand and the stardust,

through every collapse and creation,

there is a pulse that echoes of you and I.

When we leave this world,

we give up all our possessions,

and our memories.

Love is the only thing we take with us.

It is all we carry from one life to the next.

– Lang Leav (excerpted from Memorie

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2016: Tour D’Exhaustion Thu, 06 Oct 2016 18:42:35 +0000 So to quote Mr. Cranky Fibro Girl, it’s been a helluva year.

It all started this time last year when Tigger, my baby, my heart, my soulmate, was diagnosed with renal cancer. We did chemotherapy and got four more months with him, but even though the cancer was going away the treatment was just too much for his little body, and so we let him go and my heart broke into a million billion pieces. And even though that was one of my worst nightmares, to my surprise, I survived.

The next few months after that were pretty much about going back to the “chop wood, carry water” basics of self-care, and then when I was finally able to come up for some air it was time to plan the summer.

It just so happens that both my parents, my in-laws, Mr. Cranky Fibro Girl and I, and my brother and his wife all got married in years that end in “6”. So this summer was both my parents’ and my husband’s parent’s 50th wedding anniversaries, our 20th, and my brother and sister-in-law’s 10th.  And of course we planned some major extravaganza-paloozas to celebrate, the preparations for which took up the next few months until mid-July, when the party took place.

So we took a deep breath and thought, OK, now we can relax. Which of course meant that just two weeks after the party we found out that my husband was being transferred to North Carolina. And oh, by the way, they needed him there in two months. Eight weeks (and a bit). 62 days. To pack up 22 years of life in Georgia, 17 of which we’d spent living in the only house we’d ever owned. To sell said house and buy another one. To sort through Every. Single. One. of our earthly possessions, MULTIPLE times (still not done with this one). To declutter and donate and discard and decide and delegate (again, a work in progress). To pack it all up and then go baby, go!

I’m pretty sure that I have touched every piece of paper that has ever existed since the beginning of time itself. You should all check your own filing cabinets, because it’s entirely possible that I’ve decluttered and organized all of your papers too. I had no idea it was even possible for so much paper to EXIST.

And of course, it was all our own doing. I found papers from when I was in Pre-K, which I believe was back in 1974. We had every single tax return we’d ever filed, all the way back to my husband’s first one from 1989. I had all of my students’ exams from the 2 years I was a TA in graduate school 22 years ago. We’d saved every check register we’d ever had. We had boxes and boxes of files full of papers from companies that no longer exist anymore. Why did we ever think we would need these things again?

And that was just the papers. It was like that with everything: furniture, boxes, books, tools, paint-don’t even get me started on the paint. I can’t tell you how many cans of old paint we found when cleaning out all the corners of our property, because numbers don’t go that high.

Now, in the interest of full disclosure I will tell you that we received one of the best relocation packages I’ve ever heard of. Plus, we’ve actually been working on moving back to North Carolina for the past four years. So it was good that we sort of rested up, because after four years of living in limbo with absolutely no movement we suddenly had to move at what seemed to me like superhuman speed. (My husband will tell you that he totally expected things to be that way, but even he had that glassy-eyed, overwhelmed look of someone who’d just survived a train wreck with an enormous brick wall by move-in day.)

Meanwhile, regular life continued apace.

We spent a week at the beach with my brother, sister-in-law, and two nephews.

My blog made Healthline’s Best Fibro Blogs list for the 4th time in 5 years,

The website The Mighty ran my post on what it’s really like to live with chronic pain.

My husband went to work every day.

And I still had fibromyalgia.

But here we finally are, on the other end; somehow, we did it. We’ve transported ourselves, the cats, and all our worldly goods to our new state. I’m still having periodic meltdowns as all our worldly goods are currently strewn across ALL the flat spaces in our house. And we do sometimes go for long periods without any actual cat sightings, just trace evidence of their existence. But we’re here, and yay, us.

Here’s to great new experiences and many fun stories ahead.


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You Can Keep Your Outrageous Salaries And Your High-Powered Careers; It’s Moments Like These That Prove That I Have The Best Job In The Whole Entire World Thu, 18 Aug 2016 00:10:11 +0000 So the other day I was home supervising someone who was giving us a quote on work that needs to be done around the house. He was really nice, and we were getting on like a house on fire when talk turned to a recent improvement he’d made to his lifestyle.

“I just started wearing these new shoe inserts,” he said. “I’ve only had them on for a couple of days,but I can already tell a huge difference.”

“Wow-that’s great!” I told him.

“I know,” he replied. “I hurt my foot a while ago but I refuse to get surgery, because I’ve talked to too many people who did have surgery and then months later are still having problems.”

“I know what you mean,” I said. “I have a lot of lower back problems but I’m never having back surgery, for the same reasons.”

“Well let me email you the information about these inserts,” he said. “They’re pricey, but they’re working really well.” Then, our rapport well-established, he continued.

“I know a woman,” he began, “whose second toe has started growing across her big toe. So she had surgery to correct it, but it’s eight months later and she still has problems walking.”

“Ooh,” I said, grimacing. “That doesn’t sound good.”

“No,” he agreed. “But a woman at her church had the same problem, so she told my friend that she just went to the doctor and had them cut that toe right off so she could be done with it, and now she’s fine. So now my friend has scheduled surgery to have her toe amputated too.”

“Huh,” I said, as one does when confronted with an unexpected amputation anecdote.

“Yeah,” he continued, “because you know you can lose up to three toes and be OK. As long as you have your big toe and your pinky toe, you’re fine.”

As a matter of fact, I did not know. But thanks to my new friend, whom we are TOTALLY going to hire, I know now. And I did not have to put on pantyhose, drive in rush hour traffic, or sit through one single Power Point presentation to find that out.

Eat your heart out, guys.

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Good Words: Check Out This Post For Some Insight On What It’s Like To Live With An Invisible Illness Wed, 10 Aug 2016 18:51:34 +0000 At the beginning of the year I became part of a network of Chronic Illness Bloggers. In addition to opportunities to test and review products, we support each other in living with our conditions, and share with each other tips, articles, resources, and posts.

One such post is the following: “4 Women Share What It’s Like To Live With An Invisible Disease.”

“You have no idea how sick someone is on the inside when you can only see the outside. We talked to four women who are struggling with chronic (read: lifelong) illnesses that are all but invisible to the naked eye. Here, they share what it’s like to suffer from the diseases and the doubt.”

A great description of what it’s like to come up against the attitude of, “But you don’t look sick”.


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Dear My Husband: This Is Why My Phone Phobia Is Actually A GOOD Thing Wed, 03 Aug 2016 20:11:48 +0000 Frequently when I’m out walking I pass the truck for a lawn service that’s used by a number of our neighbors. It brands its work as “realistic” which always strikes me as kind of odd, because of all the words I could think of to describe professional yard care, “realistic” is not one of them.

My first reaction is to wonder just what kind of crazy-ass unrealistic services they were asked to provide that caused them to have to specify that this is the only kind of work they offer. Maybe something like, “No, ma’am, I’m sorry, but we cannot turn your yard into a fully functioning replica of The Magic Kingdom as expressed solely through the Art Of Bonsai” ?

Then I feel kind of sad, because it makes me imagine a young, eager lawn guy or gal being told to lay down their lofty dreams of yard care glory (Bonsai? Magic Kingdom? Why not?!), and instead just settle for what is  “realistic”.

But mostly, it makes me want to call them up and ask really obnoxious questions. Such as,

“How much do you charge for “Tragically Disenchanted” lawn service?”

Or, “Can you recommend anyone who provides ‘Utterly Unfeasible’ care? What about ‘Fleetingly Quixotic’?”

Or, “Would you give me any kind of discount if I combined ‘Existentially Angsty’ with ‘Vaguely Fraught’?”

But luckily for everyone involved, my deep and abiding phobia of Talking To People On The Phone means they are safe from my trying to poke them with giant snark sticks.

It’s always nice when I can use my illness to help others.

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Product Review: Mo’s Dream Cream Wed, 13 Jul 2016 17:27:47 +0000 I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I was recently given the chance to try out a new pain relieving lotion, Mo’s Dream Cream, as well as their No Mo Pain Stick, as  possible new tools for my pain management toolkit.

The first thing I noticed-and appreciated-about Mo’s is that it is not at all greasy when you apply it to your skin. It went on smoothly and easily, and absorbed quickly into my skin, and I didn’t feel like I had to immediately wash my hands afterwards like I do when I use other ointments and salves. Although another thing I really like about this lotion is that if for some reason I do have to wash my hands after I put it on, despite capsaicin being one of the ingredients, it doesn’t burn when the water touches my skin.

The next thing I noticed about Mo’s after I used it for the first time is that it didn’t intensify my pain before it started to relieve my pain. I’ve tried lotions and ointments before that have capsaicin as one of their main ingredients,  and that once I apply them then make my skin feel like it is burning and throbbing before the pain relief starts to set in. But that is definitely not the case with Mo’s.

I also like the way that Mo’s smells-and the ways it doesn’t. One thing I really dislike about the topical pain relievers you buy at the drug store is how strong and medicinal they smell, usually like camphor or mentholatum. And the odor just seems to go on and on forever, especially if you get it on your clothes. But although Mo’s does have a strong odor when you first put it on it’s composed of nice things, like wintergreen and clove essential oils.

As for pain relief, I give Mo’s high marks. Summer is always a time of high pain flares for me, and I’ve been really grateful to have this new tool in my fight against pain. For me, the lotion did not reduce my pain all the way down to a level where I could use it as a substitute for my pain meds, but it did help me start getting some quick relief as I waited for the meds to kick in. (Your mileage may very.)

If you’re interested in trying Mo’s Dream Cream for yourself its creator, Keri, has set up a promo code for readers of this blog that will never expire. If you use JENNY4U you will receive 10% off of all products and/or promotions. You can access the store here.

****Important Note: This is NOT an affiliate link. I do not receive ANY money if you decide to buy one of Mo’s products and choose to make your purchase using this link. I’m just sharing about a product that I’ve found to be quite useful in helping to manage my chronic pain.****

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A Field Guide To Spotting First Borns Wed, 08 Jun 2016 19:01:41 +0000 A Normal Couple:

1. Brings home one piece of cheesecake to share.

2. One person gets out a knife,  eyeballs the dessert, and cuts it into two roughly equal pieces.

3. Each person eats their half.

A First Born Couple:

1. Brings home one piece of cheesecake to share.

2. One partner pulls out the kitchen scale.

3. The other partner gets down a dessert plate, places it on the scale, and then zeroes it all out so that the weight of the plate will not factor into the total weight of the cheesecake to be sliced.

4. First partner carefully removes cheesecake from original container and places it on the zeroed-out scale.

5. Second partner surveys entire knife collection and then selects the best tool for the job based on handle, weight, and ratio of blade size to size of the item to be cut.

6. Brief pause while Google is consulted due to differing opinions on choice of knife.

7. With surgical precision the partner with the engineering degree makes the first cut, slowly drawing the two halves apart and placing them on separate plates.

8. Each partner weighs their piece to make sure they are as equal in weight as is humanly possible.

9. Then, and only then, can dessert be consumed.


Bonus Tip: If when addressing correspondence to you and your husband your mother is scrupulously careful to alternate the position of your names (e.g., your name first on the outside of the envelope, your husband’s name first in the letter’s salutation), you can be sure that both you, he, and she are all first borns.



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