All Posts Tagged ‘Autoimmune

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Mandated Empathy Makes Me Sick(er)

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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 

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Living Incurably Solutions: Grocery Transport

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Problem: Carrying groceries in from the car sets off muscle spasms that ruin the rest of my day.

New Solution: I purchased this rolling cart/wheelbarrow  for $24 from Amazon.*  It’s sturdy enough to roll over curbs but small enough to fit through house doorways.  One of the reviewers on Amazon said she used it for laundry too.  Great product saving me lots of grief!   #NotSponsoredJustLikeIt

*Note: It appears the price of this fluctuates.  When I bought it, it was $24 with free shipping.  It’s much higher at the time of posting this but hopefully it will go back down again or you can find something similar.

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I really like being interviewed. Anyone else care to hear my thoughts? I’ve got lots.

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I had an interesting conference call yesterday with some of the folks at a startup company named PillDrill.  They have been working on their invention for two years now and are looking to launch in 2016.  They had a bunch of questions for me about being young and chronically ill – my medication habits, experiences, etc.  It was fun speaking with them (in case you can’t tell I don’t mind sharing my opinion and talking about myself) and their product sounds quite intriguing.  It is a 7-day pill tray that in a variety of ways alerts you and tracks your medication intake. (EDIT: All the info connects to an app where you can enter prescription info and also view your info.)

It also offers an easy way to track your symptoms. See the little cube on the right?  It has different smiley faces on each side and you scan the side of the cube by passing it over the base that corresponds to how you’re feeling that day.  Favorite part.

When we talked I told them about the times I’ve screwed up my medication, how that happened and what the consequences were.  I also told them about how much I dislike parcelling out the pills into my pill planner once a week.  I worry I’m going to screw up again and have a horrible week, plus I just emotionally hate looking at all those pill bottles at once.  Their product couldn’t change that, of course but I did suggest that in their manual they suggest parcelling your pills in the morning when you’re sharp and then maybe some kind of little treat afterwards.  Like a cookie.  That would get me to do it at the proper time which would reduce mistakes.

We also talked about what kinds of symptoms I would keep track of.  Right now it would be headaches (my dry needling doctor always wants to know) plus my daytime sleep disorder episodes (which by the way was diagnosed as idiopathic hypersomnia + parisomnias, meaning falling asleep during the day at unwanted times + nighttime terrors/hallucinations).  A sister disease to narcolepsy.  I am interested to see how many of the little pods I would need though.  I take medications 4x time and right now I use 7 boxes, each box having 4 compartments – one compartment covers my whole day.  With PillDrill will I need 28 pods?  Also I keep thinking about the name “PillDrill.”  It doesn’t dazzle me.

If you have thoughts regarding how you take your medications or what symptoms you would keep track of, feel free to leave a comment (there’s a “Leave A Reply” command right at the beginning of this post)  and I’ll forward your opinions to PillDrill.  Maybe you’ll get to help shape their product and/or marketing campaign!

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Living Incurably On A Budget: #YardSaleNinja

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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?

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The House You Live In

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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).

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Market Days 2015

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Our little city held its annual Market Days Festival this week and my friend Kate and I took Christopher’s daughter and her friend one morning.  I’m a particular fan of Market Days since my favorite thrift store holds a big tent sale in the street in front of their store, Christopher’s daughter and her friend are particular fans because they like to approach all the venders and collect all the free goodies (logo’d pens, post-its, tote bags, sunglasses, etc) and I think my friend Kate has now become a particular fan, seeing’s how she won $50 that day in a bank giveaway. (#yah!)

We were blessed with a warm but not hot day so I wasn’t sweltering under my hat and long sleeves (#photosensitivity) and Kate was kind enough to carry the thrift store bargains back to the car for me (#feeble #LameAsInUncool #chronic pain) so we could proceed with our walking, cargo-free (#AwesomeGirlfriend).

In the gallery above are some snapshots of:

  • the yummy treats of one vendor
  • my free green sunglasses which (without the bank logo on the side) look like something a hipster would actually pay money for
  • the rocks the girls painted at our local awesome art studio ($1 each = 30 minutes Kate and I could sit indoors on a comfy couch and chat)
  •  My new sharp $8 Calvin Klein jacket
  • The almost identical black rain jacket (tags still on!) I found to replace the one Christopher had to throw out last year due to broken zipper
  • Me channeling 1st season (#Mad Men) Betty Draper in my $2.00 flowy white 2 piece nightdress set

Hopefully this was a great start to a whole summer full of bargain diversions.   #frugal #ChronicallyWithoutIncome

Anyone have fun frugal activities to do with tweens and/or adult girlfriends they care to share?

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