All Posts Tagged ‘Lupus


Mandated Empathy Makes Me Sick(er)



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.


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 


Living Incurably Solutions: Grocery Transport


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.



Night night.

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 Night night. #HappyPlace That is, when there’s no hallucinations. Last night there were imaginary pine needles and attic crud falling all over me. The weirdest times are when I still see stuff after I’ve turned the light on.  I’d like to request a hallucination where my bedroom turns into a fancy massage/pedicure/facial spa.  With no pine needles.


Rey’s got my back. Or rather, my front.

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Friday night we saw the new Star Wars movie in the theatre.  Loved it.  Loooovvvvveeeed it.  Very enjoyable to watch.  As the seventh movie in the franchise, I of course loved seeing the the force truly “awaken” in a female character for once.

A long time ago in a blog not so far away, I wrote two posts about avoiding the pain inflicted by bras.  The Force Awakens made me think of this post because the main character, Rey, totally’s got my back (or rather, my front) by promoting an outfit that wouldn’t require me to wear a bra.  Due to my muscle sensitivity, I find bras tortuous.  So needless to say, I’m on the lookout for tops inspired by hers.  No costumes please.  Rock on you badass scavenger/future Jedi.



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


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!



Not your grandma’s daybed

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This past summer we took on a family project designed to fit some very specific needs of ours.  We needed a living room couch (big & comfy) that could also serve as a decent bed.  Not a crummy, fold-out bed but one that displaced husbands (#NightTerrors #ChronicPain #SoooSorryBaby) could sleep on a regular basis without developing some kind of back problem.  I took to Pinterest where DIY pallet furniture projects like this caught my attention.

Thus I designed a couch whose cushion was actually a twin mattress.  (Walmart $89)  To construct the frame we needed 4 whole pallets and around 2/3 of four additional pallets.  If you’re willing to scrounge around and be persistent, you can obtain pallets for free from local businesses.  A lot of them say no, but plenty said yes as well.  We cleaned and sanded the pallets then attached them vertically with deck screws and horizontally with little wooden braces Christopher cut from scraps.  We painted only certain aspects of the pallets 1) to encourage that intentionally rustic look and 2) it would be grueling to paint all the inside surfaces of a pallet.

After attaching the pallets that make up the back of the couch, which I think is rather ugly, I promptly ordered some long tie cushions (blue & white pattern) (Bed, Bath & Beyond web site $20) to conceal the wood  and provide a comfortable surface to lean on.  I wrapped a thin quilted comforter (yellow & gray chevron) over the twin mattress and tucked it in, hospital-corner style. A bunch of throw pillows later and the couch aspect of the project was fulfilled.  Now onto the night-time bed function.  A twin mattress is pretty tiny for an adult to sleep on so I designed two benches that serve as movable sectional pieces to expand the width and/or length of the bed.  [In a future post I’ll share how easy it was to make those benches out of two wooden crates I got at the craft store.]

At bedtime we toss all the throw pillows onto a chair and pull out a memory foam mattress topper that I cut to match Christopher’s preferred sectional placement (double-bed size on the top half and extra long at the end).  Even though the benches are the perfect height, a mattress topper uniting both pieces makes the bed feel more continuous.  I keep a fitted flannel sheet on the mattress topper so after plopping it on the couch it just needs the comforter and pillows which I keep stashed nearby.  A sound machine and phone charger are nestled in next to the couch like a discreet bedside table.  The sound machine’s white noise feature also comes in handy for me if I need to lay down during the day and don’t want to wear my #tinnitus earbuds.


I never thought my first year of marriage would so often include separate beds – but let me tell you, we have way more fun and way less disagreements during the day when we’ve both gotten decent sleep.

Designing, building and styling our couch/bed was exhausting but also empowering.  I used every bit of creative/pragmatic/frugal energy I didn’t even know I had in me.  It was a real team effort but the three of us (plus the cats) have used and enjoyed it every day since.