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You can’t go wrong with a wall of colorful balloons

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For a $4 bag of balloons and some rooting around in the basement for clear fishing line, you can create this rather dazzling and extremely fun party photo backdrop.  I followed the instructions of Brit Morin in her book, “Homemakers,” to blow up the balloons (lungs not helium), cut lines of fishing line the height of the wall, attached balloons to the fishing line with a simple knot, and attached one end of each fishing line to the ceiling with clear tape.  I ended up needing around six strands of balloons to fill the space.  Our birthday party guests had a lot of fun glamorosly posing in front of the backdrop, and then eventually, in fits of giggles, became entangled within the strings which also produced some pretty cute photos. (Blurred the kids on purpose in these photos.)  Great fun!  Nice photos.  Highly recommended.

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Review of PillPack (NOT sponsored)

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This spring I took a chance and abandoned my local pharmacy for a mail order system called PillPack.  PillPack does not just send you your medications by mail but also portions out each dose into little time-labeled packets.  After many weeks of dosage/time adjustments, I am now a huge fan of PillPack and highly recommend it.

I became interested in PillPack because I was increasingly making mistakes counting out my pills into the correct days and times.  No matter how careful I was, I kept making errors, sometimes to very detrimental effects.  But now with PillPack, my medication has gone from being extremely stressful to extremely easy. And here’s the greatest part –  I’m not paying any extra. I pay the same amount of money for my co-pays, I pay no shipping, and in fact I think I pay less for over-the-counter medications like Tylenol.

At certain times in my medical history, my medication schedules were so fluid that this would not have worked for me. However, I’m at a point right now where the few medications that I take irregularly I can order in a bottle and use as needed.

And just to be clear I am not receiving any kind of free anything or perks from PillPack. They don’t even know I’m writing about them.

How PillPack works:

  • Go online to pillpack.com. Create an account for yourself using an email address.
  • Enter in all your medications and your dosages well as what time of day you wish to take it.
  • PillPack will then contact your current pharmacy and/or your doctors office to get your prescriptions transferred.
  • Provide your credit card information.
  • Within two weeks you receive a box in the mail (shown above) which includes any bottles you have ordered and also your daily packet dosages attached together in a big wheel that comes out of a dispenser on top. On the side of this box is a very helpful key with pictures showing exactly what each medication tablet looks like (shown above). You leave the wheel in the box and as the time of day arrives you rip off that one little pouch.
  • A new box arrives every two weeks.  This is better than once a month because if you have a medication change, you don’t have to wait as long.
  • You can manage your medications and monthly bill online (see screenshot above) by logging onto your PillPack account online.  It’s a very user-friendly, aesthetically-pleasing website.
  • Going out for the day?  Tear off the applicable packets to take with you, they’re very travel friendly.
  • The PillPack staff is very friendly and helpful to deal with.  While I was still figuring out my times and dosages and making adjustments every week, I emailed back and forth with my requests and they were very patient.
  • You can still, of course, fill any prescription you want at your local pharmacy. Say you’re prescribed an urgent 5-day course of antibiotics, you just bypass PillPack entirely and fill it wherever you want on the spot.

Downsides:

  • Birth-control pills cannot be divided up and put into your daily packs so you have to keep the birth control package on the side. That is a shame because birth control is one of those medications you really can’t forget to take.
  • I think all the boxes and shipping is probably bad for my carbon footprint.  I’m very sorry Mother Nature. I’ll try to make amends in other departments, like not using paper plates.
  • Sometimes when I go to tear a pack off the wheel I accidentally tear open one of the packs and the pills spill out everywhere.

All in all, what a great service.  Made my life a whole lot easier!

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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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The Easiest Cake I Didn’t Bake

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Here is a pictorial recipe for the Ice Cream Cake that I made this past weekend.  It’s so easy.  Easier than baking a cake from cake mix.  And less dishes. Plus it’s something different that people won’t expect.

Tips:

  1. Don’t use too much Cool Whip.  Just enough to serve as glue/frosting.
  2. In-between cake layers feel free to add your favorite candy bar/cookies to add a crunchy layer.  I really recommend breaking your candy/cookies up into crumbles.  As you can see here, I used long prices of KitKat and it became hard to cut once everything was frozen.
  3. I personally swear by store-brand ice cream sandwiches.  Brand names like “Hood” just don’t taste as good.  I go for the cheap box every time.
  4. Amidst birthday excitement I neglected to photograph one phase, but as you can see from the final picture, you cover the whole cake with a thin layer of Cool Whip (then freeze for a while, just to firm everything up) and then decorate with sprinkles/frosting/candy/candles, etc.
  5. When it’s time to cut the cake, keep dipping your sharp knife into a glass of hot water.

Happy Not Baking!

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Chronicality

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Of course I dislike saying “no thanks” and missing out when an activity requires just a little too much from my body.  But more than that, I hate the alternative where I say “yes” and then end up seemingly undependable or a drag on other people’s fun.  Marion J. Herbert recently wrote an article on this topic and interviewed myself as part of her research.  The piece includes lots of helpful tips.  I hope you check out the article here on the new upbeat chronic illness website, Chronicality.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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