Cranky Fibro Girl http://www.jennyryan.com Harnessing the healing power of snark Wed, 24 Aug 2016 00:29:28 +0000 en-US hourly 1 https://wordpress.org/?v=4.6 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 http://www.jennyryan.com/2016/08/you-can-keep-your-outrageous-salaries-and-your-high-powered-careers-its-moments-like-these-that-prove-that-i-have-the-best-job-in-the-whole-entire-world/ http://www.jennyryan.com/2016/08/you-can-keep-your-outrageous-salaries-and-your-high-powered-careers-its-moments-like-these-that-prove-that-i-have-the-best-job-in-the-whole-entire-world/#respond Thu, 18 Aug 2016 00:10:11 +0000 http://www.jennyryan.com/?p=12215 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 http://www.jennyryan.com/2016/08/good-words-check-out-this-post-for-some-insight-on-what-its-like-to-live-with-an-invisible-illness/ http://www.jennyryan.com/2016/08/good-words-check-out-this-post-for-some-insight-on-what-its-like-to-live-with-an-invisible-illness/#comments Wed, 10 Aug 2016 18:51:34 +0000 http://www.jennyryan.com/?p=12210 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 http://www.jennyryan.com/2016/08/dear-my-husband-this-is-why-my-phone-phobia-is-actually-a-good-thing/ http://www.jennyryan.com/2016/08/dear-my-husband-this-is-why-my-phone-phobia-is-actually-a-good-thing/#respond Wed, 03 Aug 2016 20:11:48 +0000 http://www.jennyryan.com/?p=11706 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 http://www.jennyryan.com/2016/07/product-review-mos-dream-cream/ http://www.jennyryan.com/2016/07/product-review-mos-dream-cream/#comments Wed, 13 Jul 2016 17:27:47 +0000 http://www.jennyryan.com/?p=12120 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 http://www.jennyryan.com/2016/06/a-field-guide-to-spotting-first-borns/ http://www.jennyryan.com/2016/06/a-field-guide-to-spotting-first-borns/#comments Wed, 08 Jun 2016 19:01:41 +0000 http://www.jennyryan.com/?p=12072 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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Well Alrighty Then-Sign Me Up! http://www.jennyryan.com/2016/05/well-alrighty-then-sign-me-up/ http://www.jennyryan.com/2016/05/well-alrighty-then-sign-me-up/#comments Wed, 25 May 2016 20:42:47 +0000 http://www.jennyryan.com/?p=12101 2016-05-25_04-33-52

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Product Review: PillSuite http://www.jennyryan.com/2016/05/product-review-pillsuite/ http://www.jennyryan.com/2016/05/product-review-pillsuite/#comments Tue, 24 May 2016 19:04:52 +0000 http://www.jennyryan.com/?p=12085 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.

So I was recently given the opportunity to try out a product called PillSuite, which was exciting for two reasons: first, I LOVE gadgets, and second, I can always use something to help me better organize my medications.

This is how my managing my meds used to look:

pillsuite1

I carted this bag with me wherever I went, and pulled out each pill bottle twice a day to take my meds. I’d tried those big plastic blocks with the flip lids and little compartments for each day’s pills, but that felt just as cumbersome to me, and if I took it on a trip I’d have to put it into a big ziploc bag because some of the flaps would pop open and the pills would all spill out.

When I opened the PillSuite box, this is what I saw:

pillsuite2

The orange carousel opens up to reveal seven compartments, one for each day’s collection of medications. I have to fill this twice myself, since I take one set of meds in the morning, and another one in the afternoon.

pillsuite3

Once you fill up all the compartments and put the top back on,

pillsuite4

you use the spout to pour each compartment’s pills into individual plastic bags.

pillsuite5

pillsuite6

Finally, you insert the bag of pills into the sealer machine

pillsuite7

 

And you end up with 7 (or 14, in my case) small, sealed bags to deal with, instead of a Big Bag-O-Pills.

pillsuite8

 

I LOVE my PillSuite. The only issues I’ve had with it are that the bags are thin and a little flimsy, so it can be hard to get them to stay on the spout when you’re pouring the pills in, and that I have to make sure and double check the seal on each bag to make sure it’s entirely closed, because I have occasionally had some spills.

So if you too are looking for a better way to manage your medications, I can definitely recommend PillSuite as a product that you should check out.

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In Honor Of National Fibromaylgia Awareness Day http://www.jennyryan.com/2016/05/in-honor-of-national-fibromaylgia-awareness-day/ http://www.jennyryan.com/2016/05/in-honor-of-national-fibromaylgia-awareness-day/#respond Thu, 12 May 2016 20:08:10 +0000 http://www.jennyryan.com/?p=12081 I wish I had it in me right now to write a moving, inspirational, and deeply insightful post to mark today. Unfortunately, I’ve spent a significant portion of the past week lying on the floor, because sitting upright in a chair is too exhausting. So instead, I’ll post some links to various posts I’ve written over the past few years that are my attempts to help explain what it’s like to have fibromyalgia.

Hitting Me Right Between The Eyes

It’s Definitely A Sign That You Had A Really Bad Night

“Why Pain-Free Days Aren’t Really All That Free”

Cranky Fibro Girl And The Puzzle

This Is What Having Fibromyalgia Feels Like

The Marathon

Dear Lyrica Commercial: As A Real-Life Fibromyalgia Patient And Not Just An Actor Playing One On TV, I Have To Say That Your Commercials Are EXTREMELEY Misleading

Aware

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Good Words http://www.jennyryan.com/2016/04/good-words-23/ http://www.jennyryan.com/2016/04/good-words-23/#respond Fri, 22 Apr 2016 13:00:26 +0000 http://www.jennyryan.com/?p=12018 Allow

There is no controlling life.

Try corralling a lightning bolt,

containing a tornado.  Dam a

stream and it will create a new

channel.  Resist, and the tide

will sweep you off your feet.

Allow, and grace will carry

you to higher ground.  The only

safety lies in letting it all in –

the wild and the weak; fear,

fantasies, failures and success.

When loss rips off the doors of

the heart, or sadness veils your

vision with despair, practice

becomes simply bearing the truth.

In the choice to let go of your

known way of being, the whole

world is revealed to your new eyes.

-Danna Faulds

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Dear Lyrica Commercial: As A Real-Life Fibromyalgia Patient And Not Just An Actor Playing One On TV, I Have To Say That Your Commercials Are EXTREMELEY Misleading http://www.jennyryan.com/2016/04/dear-lyrica-commercial-as-a-real-life-fibromyalgia-patient-and-not-just-an-actor-playing-one-on-tv-i-have-to-say-that-your-commercials-are-extremeley-misleading/ http://www.jennyryan.com/2016/04/dear-lyrica-commercial-as-a-real-life-fibromyalgia-patient-and-not-just-an-actor-playing-one-on-tv-i-have-to-say-that-your-commercials-are-extremeley-misleading/#comments Thu, 21 Apr 2016 19:07:53 +0000 http://www.jennyryan.com/?p=12003 When I was first diagnosed with fibromyalgia back in 2008 Lyrica had (I think) just become the first drug officially approved to treat it. At first I was so happy to see Lyrica commercials on TV, because I saw them as a sign that fibromyalgia was being validated as a real illness (people like my pain doctor notwithstanding). Plus, whenever anyone would ask me what fibro felt like I could say, “You know that commercial for Lyrica that shows the person’s entire body on fire? It feels exactly like that.”

But now that I’ve been taking Lyrica for over 7 years I find myself arguing with the TV every time I see those commercials. Here’s why.

If you take the commercials at face value, they would have you believe that the following is true:

Lyrica

But treating fibromyalgia is not like treating a sinus headache or strep throat, where the parameters of the illness are known and understood, there’s a standard treatment that clears up most cases, and there’s a predictable, linear improvement once the patient starts taking the necessary medication. Clear cause, clear treatment, clear effect.

Fibromyalgia on the other hand is a puzzle where the pieces are not only constantly moving, but also constantly changing size and shape. And speaking for myself and most of the fibro patients I know, there is no one thing that gets rid of all our pain. We’ve all had to develop an entire range of tools to deal with our illness. So that’s the first moving part.

Second, not all the tools work all of the time, or even work the same way from one day to the next. There’s a lot of throwing spaghetti at the wall and seeing what sticks. And what sticks changes from day to day; on really bad days, it can change from hour to hour, or even minute to minute.

Here are some examples of what’s in my toolbox:

-cardio (usually aerobic walking and recumbent bike)

-physical therapy exercises

-stretching/yoga

-meditation/visualization

-heating pad

-ice packs

-warm baths

-my TENS unit

-massage

-chiropractor

-sessions with Lynne

-cognitive behavioral therapy

-EFT (Emotional Freedom Technique, or “tapping”)

-writing

-anti-inflammatories (and constantly having to tweak the doses)

-non-narcotic painkillers (and constantly having to tweak the doses)

-narcotic painkillers (and constantly having to tweak the doses)

-epidurals and nerve ablations for my back

-mental health meds (and constantly having to tweak the doses)

-migraine and nausea meds (and constantly having to tweak the doses)

-my CPAP machine

-insomnia meds

Now, let me show you what it looks like to try and use these tools to manage my pain. Let’s take two hypothetical days, say Monday and Tuesday of the same week, and say that on both days my pain level is an 8.

Here’s the third moving part: even though my pain levels might be the same on subsequent days, I have no way of knowing what each 8 is made up of. It could be the same things. It could be a mixture of old and new reasons. The 8s might even be made up of completely different things. And I have no way of knowing which one is true. So I have no idea which tools are going to work. This is where the spaghetti-throwing begins.

Actually, a better metaphor might be that of building blocks. Because I am starting with tools that I know help me feel more comfortable. So every day I’m trying to build a tower of blocks made up of my pain management tools that equals the height of the tower made up of my pain level for that day.

This is the place where the puzzle pieces not only move, but change shape. So this is also the place where the Lyrica commercials are most misleading. And this is most DEFINITELY the place where opponents of narcotic painkillers get it wrong. BECAUSE NO ONE BLOCK GETS RID OF ALL OF OUR PAIN. So we do not spend our days just popping pain pills and zoning out. We spend our days trying to figure out what combination of blocks will bring us as much relief as possible for that particular day.

So let’s say that on Monday, through a bunch of trial and error, I’m able to find a combination of blocks that equals the amount of pain I’m feeling that day. It might look like this:

2016-04-21_10-59-42   

Pain-wise, this is great. But because I don’t know exactly what’s causing today’s pain, I don’t know exactly why these particular tools worked in this particular way  on this particular day. So  I don’t come away from the day with a recipe of pain relief that’s guaranteed to work every single time for every single pain day. I could try using the same blocks on Tuesday and have it look like this:

2016-04-21_01-59-19

So then I’m back to trial and error again with, as always, absolutely no guarantee that any of my other pain management blocks will work that day. I might find a few more blocks to add to my pain relief tower. I might find enough to equal the size of that day’s tower of pain. Or I might try every single one of my tools and not have any of them work, which means I just have to find a way to ride out the pain for the rest of the day and then hope I have better luck the next day.

So the next time you see Lyrica on TV, or meet someone who lives with chronic pain and illness, or hear people debating whether or not people like me, who suffer Every. Single. Day. from relentless, agonizing pain should have access to LEGAL narcotic painkillers that help us function and actually have a good quality of life </end rant>, I hope you think of this post.  Because managing chronic pain is really, REALLY hard. It is a full-time job that we did NOT sign up for and we work our freaking asses off to do it. With no vacation days or weekends off. No breaks, E-V-E-R. We are on call for this job 24/7/365. (And if you don’t mind, I’d like to ask you to take just a few minutes and imagine if your job was like that. I suspect your brain won’t let you do it.) We are those ducks you see gliding across the pond: holding it together, managing this beast of a burden while also creating a good life on the surface, all the while paddling like a maniac under the water to make it all work.

So maybe the next time you see one of us you might also say something like this: “Wow, that sounds really hard. I’m sorry you have to go through all of this. You’re doing SUCH a good job.”

Because gifts of comments like that?  Are some of most powerful, soothing tools we have.

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