All Posts Tagged ‘AshleyJane Kneeland

Post

Mandated Empathy Makes Me Sick(er)

3 comments

2012-01-129508.49.00

To my fellow members of the chronic illness community,

As illustrated by our collective Twitter, Pinterest, Instagram and Facebook posts, an overwhelming amount of us devote considerable time each day to criticizing the healthy.  We’re offended when our healthful counterparts don’t anticipate our needs, we’re insulted when they ask the wrong questions, we sneer when they aren’t well-versed in Spoon Theory, we’re scornful when they invite us to participate, and then after all that, we resent it when we feel left out.  None of us are benefiting from this current communications approach.

In the first place, isn’t empathy that is mandated heading towards oxymoron-land?  Empathy should be a kindness voluntarily extended over time, not obligatory platitudes resulting from the quotes we keep posting on Facebook.  Let’s take a break from “TWELVE THINGS YOU SHOULD ALWAYS SAY TO A PERSON WITH CHRONIC ILLNESS” lists.  (I’d like to know the success rate of such postings.  Are your friends going in order down the list or are they free-styling?  If they’re leaving in a hurry, can they comfort you Chinese takeout style and just shout “Oh right, #3 and #7!  See you tomorrow!”)

We want someone’s compassion towards us to be genuine and of their own volition.  I myself was elated the day my veterinarian called in the rest of the office staff to ooh and ahh over our new cat.  It was definitely insinuated that this particular feline was their new favorite.   When the same thing happened with my next cat, I was on Cloud Nine and logically concluded that I must be The Best Cat Adopter Ever.  Well, eventually I found out that all new pets get the same amount of fuss; it’s like company policy or something.  The cats took this revelation pretty well.  I, however, was utterly crushed.  Mandated affection just doesn’t feel as affectionate.

What’s most damaging about the negativity of these posts is not to our group image but to ourselves on a personal level.  Maintaining an identity separate from that of “patient” and nourishing connections with people who aren’t sick can be challenging but it is vital if we want to thrive in spite of a chronic illness.  Despite what we tell ourselves, continually posting these collective gripes is NOT healthy venting, it’s NOT social bonding, and it’s NOT raising awareness.  It’s an “us versus them” mindset.

So I say, let’s resist Pinterest Pins featuring a lonely planet in a dark sky with the despondent message, Healthy people will never understand the burden of illness.  When illness is isolating enough already, why throw down negative borders separating us further from the rest of the world?  Jedi Knights bear a lonely burden, but they don’t go around the universe bellyache-ing about how no one understands them, now do they? (#iHeartRey)

Now before you start composing a nasty comment about what an insensitive traitor I am, let me be clear:  I absolutely believe that as chronic illness survivors, we deserve the most level playing field possible, at work, at school, at home.  To get this equity, we often have to speak up.  But making oneself heard with a direct request (I will need a specific style of office chair please; Occasionally I may need an extension on term papers; Someone else better carry this #$&!ing laundry basket upstairs…) is wholly different than complaining passive aggressively on social media.

We survive the hell of chronic illness every day – we should show (not tell) people that we’re the toughest in society, not the whiniest.  We may be trapped in these dysfunctional bodies but we shouldn’t be confining ourselves, socially and mentally, to resentful casualties.  Like yours, my illness involves pain, exhaustion, embarrassment, and disappointment but I’ll be damned if I allow it to breed grudges when I could use it to generate strength, practicality, and thick skin.

Sincerely,

AshleyJane K. Boots

Chronic Illness Comrade

AshleyJane K. Boots is living with the complications of Lupus and Fibromyalgia.  She lives a colorful life in Concord, NH with her husband and his extra-ordinary teenage daughter.  AshleyJane blogs at www.LivingIncurably.com 

Post

Living Incurably On A Budget: #YardSaleNinja

Leave a reply

After I recently started following the blog/Instagram account Fun Cheap or Free – Where Frugal Gets a Facelift, I’m feeling less embarassment about my constant quest for low-cost goods.  Christopher’s daughter is always amazed that I can remember all the prices in our local grocery store and am constantly comparing them to other stores/sale prices.  My brain is just built for that kind of comparison shopping, I guess.  I wish I could remember names that well.  Among many others, past posts of mine about living on a budget include:

My favorite two free digital magazines 
A $42 TINNITUS MASKER VS. THE PRESCRIPTION $2,400 ONE
What an absolute bargain your local library can be
Thrift storing

Today I’m going to brag about all the yard sale bargains I found on a recent Saturday morning.  My friend Kate drove, loaded my items into the car, and then hauled it into my house for me.  #ShesTheBest   This was my first time intentionally yard sale-ing.  I printed off a list of that Saturday’s yard sales (best time to go I think) from our local newspaper and then organized the list by neighborhood.

 Maybe treat the day like a trip to a casino; bring $40 cash and that’s all you’ve got to spend.  And with all that money you’ve saved, make sure to go out to lunch.  Yard sale-ing is tiring work, you’ll deserve a treat, right?

IMG_0743-2

Post

Speaking at the Living (Well!) with Gastroparesis Online Summit on September 26th

Leave a reply

Gastroparesis: a condition in which the spontaneous movement of the muscles in your stomach does not function normally.  I read that as a result, vomiting, nausea, malnutrition, bloating, pain and many more symptoms can occur.  Very scary and overwhelming, I imagine, especially for the newly diagnosed.  Lots of discomfort and lots to learn.  And to top it all off, spellcheck has apparently no record of the word or any word like it.  It doesn’t even offer a suggestion word!  Talk about the icing on the cake of despair and isolation.

But!  All such folks should head over to Crystal Saltrelli’s website, “Living (Well!) with Gastroparesis.”  Crystal is a Certified Health Coach through the Institute for Integrative Nutrition and the American Association of Drugless Practitioners.  Her base is a BA from Dartmouth College and she has completed continuing education coursework via the Harvard School of Medicine, Massachusetts General Hospital and UCLA.  Crystal’s website includes not  only her informative blog (recipe suggestions, patient stories, supplement reviews, etc) but it also bestows up on you (read: free) her 40-page eBook, “Quick Start Guide to Gastroparesis Management.

Crystal is organizing an online all-day conference for gastroparesis patients and caregivers – Living (Well!) with Gastroparesis: the Coping, Stress & Anxiety Online Summit on Saturday, September 26th.  Yours truly will be one of the guest  speakers.  I’ll be speaking on “outlook.”  #1 on my preparation list: Picking a backdrop.  And learning how to correctly spell gastroparesis.

IMG_0743-2

Post

The House You Live In

Leave a reply

If the words you speak do indeed become the house you live in, this blog-built abode would be furnished with unexpected bargains and free things I discovered or somehow finagled my way into getting (HERE, HERE & HERE), there’d be a whole closet full of gear for my never-ending battle with own body (HERE, HERE & HERE), there’d be lots of books (HERE & HERE), guests would come to expect wiseass gallows’ humor (HERE & HERE), I’d never leave the house without some kind of a plan to control/mitigate potential symptoms (HERE & HERE), and everywhere you looked I’d be pointing out a solution or a recipe that I am sure is THE MOST CLEVER THING EVER (HERE, HERE, HERE, HERE & HERE).  There’d be some rooms with closed doors because I find it’s harmful to spend more time in there then you need to (HERE).  But overall it would be a colorful and dynamic house (HERE).  And you’d be welcome.  But not if I have a headache or am watching Fringe (HERE).

IMG_0743-1

Post

When 1 = 4

3 comments

Recently I was sent an adorable and complimentary (which of course made it even more adorable) little USB hub to try out.  A USB hub, in case you’re not familiar, is a gadget that takes one USB port and turns it into four.  And a USB port, in case you’re not familiar, is the way your gadgets connect to each other – your computer downloading the  photos off your camera, for example. Or your really nifty pink screw gun recharging its batteries while you drive to your friend’s house to provide emergency maintenance.  (Which, incidentally, was the only scenario I could think of to explain why a screw gun would charge via USB.)  So here’s my hub, which makes 1 = 4.  And my pink screw gun:

The main reason I’ll keep using this hub is its design.  When it’s not being used to port devices such as my USB thumb drive, my mini iPad, my bluetooth ear buds, and of course, my pink screw gun, it sits alone under my computer screen, barely noticeable.  It’s not just that the color happened to camouflage it perfectly against the silver hue of my old iMac, but its tiny and sleek design makes it perfectly discreet and does not clutter up my desktop in the slightest.  As you can see, the hub plugs into the back of the computer.  Which, by the way, does NOT need to be an Apple product – seeings how the U in USB stands for “universal” it works across all platforms – Macs, PCs, Chromebooks, etc:

Besides my uncluttered desktop, Christopher pointed out this hub can also be useful in the car.  I’m thinking back to recent car trips when all 3 (sometimes 4) of us wanted to charge our various phones/tablets/devices but there was only one USB port in the car.  Again this little guy could come in handy:

As part of a quest to broaden my blogging skills, I filmed a 2-minute video to illustrate my thoughts:

As far as negative critiquing goes, I only experienced one glitch BUT it could be part of a chronic problem stemming from the computer NOT the device – there was one time I thought everything was charging but actually nothing was charging because the hub wasn’t perfectly clicked into the back of the computer.  Seeing’s how I have a very old iMac with ports that can occasionally be finicky, I doubt much of the fault lies with the hub.

So, all in all, I recommend this gadget not just because it makes 1 = 4 but also for it’s sleek design and discreet aesthetic.  If your cluttered desktop or overcrowded car could use one, I believe you can purchase it here where it (right now) is selling for a bargain $12.99.

Hope that provides some helpful information for one of you out there!

IMG_0743-0