All Posts Tagged ‘pain

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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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1st Impression of AlignMed vest: Kinesio tape meets apparel line

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A few years ago I had a physical therapist who, after our heated pool therapy, would apply Kinesio Tape to my shoulders in an effort to (as I understand it) stimulate better posture within painful muscles and to keep my shoulder blades from “winging out,” a phenomenon that results from pain, worsens said pain.  See this photo from a few years ago where my hot pink Kinesio tape was caught by the camera at a birthday party:

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I was surprised that I liked the tape. Considering how achy and tender my shoulders are, and that something like a bra strap often feels akin to torture, I was surprised that the tape not was not painful but actually seemed to help prevent spasms.  Unfortunately the taping ended when the physical therapy ended, and that was that.

A few weeks ago when I received a fabulously free box of AlignMed Products, Christopher noticed that the literature mentioned Kinesio Tape when explaining the similarly therapeutic “NeuroBands” within AlignMed’s garments. That was a hopeful thing to hear, because, despite the excitement of getting to try new products out for free, I was a little nervous that they would just be really tight shirts that made the pain from a bra strap feel like a walk in the park.  (I’m thinking that saying was not coined by someone who had Lupus.  I guess the Lupus version would be a very small, dark park.)

So since I got home last weekend from a visit to Washington, DC I have worn the AlignMed SpinalQ vest twice for a period of one hour each time (recommended use in the beginning).  I wore it for two activities where I typically end up having especially bad posture – typing and riding my exercise bike. See me in the vest here:

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As you can see from the picture, this product is so NOT related to the nonsense product being endorsed by the Kardashians lately.  It’s like 2015 vs. 1817.

Initial observations: Wearing the vest did feel similar to wearing  my PT Kinesio tape, a gentle but firm, constant lift and hold. Having proper posture for an hour of the day felt good, both physically and mentally.  After a larger, more scientific-sized sample of sessions and observations, I will report back.

I hope your week starts off on a good note.

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Instagram inspiration is sometimes what gets me out of bed in the morning

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Earlier this month I wrote this guest post on Julie Ryan’s blog, “Counting My Spoons.”  The topic of my post was Making It Work: Chronic Illness and Fashion.  In my own little way, I discussed anxiety, bras, Mr. Tim Gunn, photosensitivity, scarves, bargain shopping and more.  As a follow-up to that, here’s what fashion has been catching my eye recently.  Lots of them are screen-shots I save on my phone; I like to consult them when I’m feeling uninspired:

Having Fibromyalgia, I’ve been seeking out clothes that don’t impose painful waistbands and snug shoulder seams on my already achy muscles.  Having Lupus and its resulting photosensitivity, I have to seek out clothes that cover as much of my skin as possible.  In the beginning of the illness, I thought that just meant if I was going to the beach for the day.  Now I know I need to be covered even if I’m just going out to run errands.  And I skip the beach entirely.

By following the lovely Instagrammers @hautehijab, @hipsterhijabis and @themodestymovement, I’m starting to see that covered-up does not have to mean frumpy and unstylish.  These ladies, who dress modestly as part of their religious devotion, always look so chic.   I really admire them.  And I’ve noticed that when I try out my own version of these modest outfits, people treat you differently.  Women are friendlier.  And men are much more respectful.  Plus I’d like to think I’m setting a good example for Christopher’s almost-twelve year old daughter.

I’ve always had a thing for scarves.  If you look at my high school pictures, I’m the only one sporting some jaunty little neck scarf. I guess it was my own little trend, one that no one else felt the need to recreate.  Now I’m into long thick scarves, as you can see from the inside clothesline I made in the bedroom:

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I hope you get the chance to check out my article.  Even if fashion isn’t your thing, hopefully it will illustrate my point that one little seemingly superficial hobby can be a worthwhile diversion from anxiety over your symptoms, freeing you to have a Living Incurably day.

P.S. Did you know Living Incurably is now Instagram – @LivingIncurably

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My Guest Post on the blog, “Counting My Spoons”

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The lovely Julie Ryan is hosting a guest post of mine over at her blog, Counting My Spoons.  Click here or on the image below to read the post entitled, “Making It Work: Chronic Illness and Fashion.”  

Would you indulge me in something?  I think it would be so fun if everyone posted a picture of themselves wearing their own favorite outfit – either tweet it and tag me @LivingIncurably, Instagram it and tag me @LivingIncurably or post it on my Facebook Page   Can’t wait to see you and your fashion!

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Living Incurably on Instagram

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Living Incurably is now on Instagram! There will be some crossover with the blog, but also some original content as well. I hope to see you there and follow you in return!

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Follow this link to Living Incurably’s Instagram page.  Here’s a photo that wouldn’t normally be on the blog but would be on Instagram.  Click to read the caption and read the (short) story behind the photo.

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Organized Bohemian

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The house we live in has “character” or is…how to say, a little….ramshackle in places, and while I do love clean uncluttered space, minimalist decorating here at Chez Boots only accentuates the plentiful cracks, tilts and gaps.  So I’ve been slowly decorating with a theme I have come to call, “Organized Bohemian.”  “Bohemian” in the sense of artsy and colorful (distracting ones eyes from the cracks, tilts and gaps) and “organized” in the sense of sending a clear message that this is not in fact a hippie commune.

The bedroom has been my latest focus, where I ditched an enormously wide falling-apart bed frame, and bohemed it up with a drapy canopy and a luscious amount of colorful throw pillows.  Voila. We’ve got a romantic and comforting artsy little nest.  When my Venn Diagram dictates an afternoon in bed, I feel quite luxurious laying there.  And so does Midge.

 

Duvet cover by Target.  Sponge-painted walls by us, paint from Lowes.  Art by Christopher.  Throw pillows from Marshall’s.  Canopy from Amazon.  Scarf atop canopy a brilliant find at our local Rite Aid.  Cracks in the walls and tilted floor by Father Time & Mother Nature.

How could you make your Venn Diagram dictated resting spot more enjoyable for yourself?

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In a Venn Diagram kinda way…

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When I’m asked, or in places such as my little book or the “About” section of this blog, I tend to describe my health  as “3 illnesses overlapping in a Venn Diagram kinda way.”  While visiting with Julie (of the blog Counting My Spoons) over email we talked about actually putting our diagrams down on paper.  This morning I dragged this dusty pad of paper out from under a bed and made it happen.

Ten years into chronic illness, it was an interesting exercise for me, and I think it could be really useful for someone in the early years of their illness.  My imaginary dream doctor would assign this as homework and then discuss it with me at the next appointment.  And then they’d reward me with a massage gift certificate.  Somehow I doubt Medicare would cover such luxurious and obliging medical attention.  In the mean time, I will be my own health advocate, treatment coordinator and medical detective – roles most of us have learned to play out of necessity.

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Don’t wait around for your imaginary dream doctor – get your symptoms as organized as you can.  You’ll be equipped to ask better questions and make better treatment plans. But then tuck it all in a drawer and put it out of your mind – your symptoms are just that  – they’re not you.

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A calm, well-argued opinion piece

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Follow this link or click on the image below to read a succinct, calm and well-argued opinion piece by Donald Unger in the Boston Globe.   I had the pleasure of briefly meeting Mr. Unger earlier this year at NH Arthritis Foundation event, and within 5 minutes he kindly offered up a Fibromyalgia doctor recommendation and also told me about the US Pain Foundation.  He strikes me as a great example of living incurably –  he didn’t shift the conversation towards his own health once, indeed I had no idea he was a pain patient himself until I read this article. {2/14 Redaction: Donald Unger was NOT the man I briefly talked with at the NH Arthritis Foundation event.  I have never met Donald Unger and have no idea why my foggy brain insisted with such clarity that he was.  My apologies.}    If you approve, share it via social media – I think it’s such a reasonable argument that it could even sway people who are close-minded about pain management.  Bravo.

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…and happy snow day to New Englanders today.

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Dry Needling: The Most Painful Thing I’ve Ever Loved

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I became interested in dry needling after I was informed that the trigger point injections I was getting were not a wise long-term plan.  Both trigger point injections and dry needling have been helpful in lessening the severely painful muscle spasms I have in my neck and shoulders, but the steroids they inject with trigger point injections can be dangerous if repeated too often.  So I turned to dry needling which involves a needle being inserted into the same trigger points, but not injecting anything.  (Dry needling is used to treat all kinds of pain, not just shoulder muscle spasms.)

As I understand it, the  medical procedure goes like this: My fabulous physical therapy doctor Irene inserts a needle into a trigger point (i.e., my most sensitive points of pain) then moves the needle around until she elicits a twitch of the spasmed muscle.  This twitch disrupts nerve signals and ultimately relaxes the knots plaguing me.   Here’s one company’s summary of the process and here is a short YouTube video showing a real patient getting dry needled.

Does it help and does it hurt?  In my experience, yes and yes. During the procedure (which I get done 1-2x week) some of the needling causes a really intense pain that takes my breath away.  For weeks and weeks I bragged to people that the pain was just awful, but that I could somehow “separate” myself from the pain when it got really bad and therefore could handle it.  That was when my appointments were in the afternoon.  Then one day I had a morning appointment – before I had taken my usual 10:45  first dose of Tramadol.  Not surprisingly, that day I had trouble “separating” myself from the pain.  Not such a super tough patient after all.

I often leave my appointment feeling like I have deep open incisions all over my shoulders.  The next day, I feel really good – way better than I did before my appointment –  and my shoulders are much much looser.  For me, the discomfort is worth it because the spasms torture me to such an extent I think I will go crazy if I don’t get some relief.  I joke that if they weren’t sticking needles in me, sooner or later out of frustration I’d be sticking a fork in my shoulder myself.

My Dry Needling Pointers

* If a practice says your insurance doesn’t cover dry needling, try other places before you give up.  I’ve been turned down by offices saying they take my insurance but that my insurance doesn’t cover dry needling, and then had the procedures covered in full at another medical office.  I guess they must bill dry needling differently at different offices.

* After your appointment, resist the urge to curl into a ball and lay still.  The more you move around and stay loose, the quicker the pain will dissapate.

* Do the accompanying stretches your PT doctor tells you to every day.  It will make the effects of the dry needling last longer.  But do them gently or you’ll just make things worse.

* Let your PT doctor know exactly how much you think you can take.  It’s okay to say, “I only want 4 needles today please.”  Make it work for you, not to you.

(This is not medical advice; I am simply relaying my own experiences for those interested.  I am not a medical professional or a dry needling expert.)

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Oh that AshleyJane

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Gil Pender was getting a check-up today at the verternarian (yeah Banfield conveniently located in PetSmarts) and one pamphlet in particular caught my eye.  Not one iota of me wants to think about my beloved cat having a chronic illness.  But that’s a reality for some animals, so I guess it’s a good thing that veterinarians are progressive enough to frame the issue as such.  But still.  Ugh.  What a dismal notion.

You know what, I wouldn’t ever want anyone to feel that way about me.  Oh that AshleyJane with that depressing chronic illness.  All those symptoms.  All that pain.  Ugh.  How dreary it is to think about her.  Must, must, must make it life’s work to avoid being the subject of such remarks.

Oh let’s look at how handsome and precious Gil is in his favorite box top.  Adorable.  Spirits raised.

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Washington Post & Chronic Pain: Don’t miss my brilliant metaphor regarding opiate overuse

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Here’s a January 12th Washington Post article that I came across thanks to Julie over at Counting My Spoons.  I tend to shun & ridicule articles with titles like, “Seven Things You Should Care About If You’re an Aquarius” or “Twelve Things You Can Improve With Just 10 minutes a Week” but I thought this article was straightforward, practical and helpful.  I added my notes in red.

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Have a great Sunday.

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Washington, DC Metro Ad highlights invisible disabilities, encourages idiots to NOT pre-judge people

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Check out this Washington Post article reporting that new signs have been posted in the Washington subway system (called the Metro) highlighting the fact that not all disabilities are visible and therefore non-disabled folks should not scoop up the reserved seats just because they don’t see anyone around in a wheelchair.  I like it and think it’s friendly and informative.  Probably something I never would have thought of if I wasn’t chronically ill.  I’m extra proud this is happening (first?) in DC, as it was my home city for close to 5 years and the Metro was my sole means of transportation.

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Great job by the Metro’s Accessibility Advisory Committee.  We all appreciate your thoughtfulness so very much.

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Living Incurably mentioned in a “New Life Outlook” post

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What a nice surprise to receive a Twitter notification that Living Incurably was mentioned in the article, “Finding Fellow Fibromyalgia Sufferers” by Sarah Borien on the New Life Outlook Fibromyalgia web site.  Thank you Sarah for listing Living Incurably as one of your favorite blogs and for pointing me towards some resources I wasn’t already familiar with.  I look forward to reading more of your work in the future!

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Hope some news as nice as this finds you all sometime soon.

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Metaphysical Furniture

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The bed consisted of a mattress atop a wooden box-like frame.  The corners of the frame were constantly coming unconnected.  Every few days she would sit on the carpet wearing her grey cowboy boots and kick the weakest corner with her heel, temporarily reconnecting the two pieces of wood.  

I’m no John Irving (BEST 1ST SENTENCES EVER) but I’m indulging myself in thinking this opener has some nice atmosphere to it.

Self-flattery aside, the issue at hand was that my bed needed to be secured more permanently.  I was told it involved an electric drill, an extra-long screw and hope that the already weakened cardboard-like wood wouldn’t fall apart upon its encounter with said drill.  A dreaded task, but it needed to be done.  Or did it?

In addition to the bed frame constantly coming apart, due to the not-so-levelness of our house floors, in many places there were gaps between the frame and floor that bit and cut up my toes on a regular basis.  And the frame added 2-3 inches of width and length (but zero height) in an already small room.  So why was I putting effort into permanently securing a piece of furniture that provided no benefit to me and was indeed injuring me on a regular basis?

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Well I’ll tell you, once I had this realization that bed came apart pretty darn fast.  With a manual screwdriver and the vigor of two tween girls, it seemed like that frame was in pieces and in the basement before my episode of the The Good Wife ended.  The bed is now in the corner, the floor space has increased temendously, there’s no kicking maintenance required and my toes are safe from harm.

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The metaphysical aspect of this experience leaves me wondering what (or who) else in my life 1) requires constant physical and/or mental maintenance?  2) drains energy?  3) causes harm?  4) provides little to no benefit? 5) could easily be removed?  Something to think about for sure.

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Chat Pack. Probably not available in North Korea.

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Many (read: most) nights by the time I’ve finished cooking dinner (read: 3 dinners – 1 vegetarian, 1 picky eater vegetarian, and me the carnivore) I barely have the energy and wherwithal to eat said dinner, much less hold up my end of hosting pleasant and interesting dinner conversations.  In comes the Chat Pack.

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Someone grabs a question out of the box and everyone at the table gets a chance to share their answer.  It’s not trivia like trivial pursuit, just…chatting.  (An example as seen below, What is something you really enjoy doing that is a chore or bore for many people?)

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We’ve gotten them out when we have dinner guests as well, and it seemed to result in laughing and getting to know people better.

It also comes in handy when Christopher’s daughter has a friend sleep over and I don’t want to subject our 11 year old guest to Christopher and I doing a two-person diatribe on what Seth Rogen during his Howard Stern interview, how I think we’re the most patriotic people on the block because we digitally rented “The Interview” on Christmas day, and how North Korea can just s&ck it.  You’ll probably never read that phrase again on this blog but such a sick delusional regime calls for a little crude language.  And how lovely that I live in a country where I have the freedom to blog about such opinions.

This Chat Pack is available on Amazon for about $9.00, and other versions are out there as well.   Happy chatting.

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Living Incurably with Books & Bears

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I interrupted a three-year streak of reading pretty much only Science Fiction novels to try a historical novel of Christopher’s, New York by Edward Rutherfurd.  After New York, I read London, am now halfway through Paris and have Russka on deck (thanks Dad!).  I find them easy reading even when my mind is tired or fuzzy, yet I’ve picked up so much historical knowledge that I would be a simply brilliant conversationalist at social events.  If I ever went to any.  Which I don’t.  However it’s sure to make me an even better substitute teacher, right?  Although it probably won’t be too helpful tomorrow, when I spend half the day crawling around on the floor with tiny and emotional Kindergarteners who don’t care in the slightest about the history of New York, London, and Paris.

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In fact, I’ve become such a fan of this writer that when Christopher gave his daughter and I enormous bears for Christmas, I named mine Rutherfurd.  (By the way, this is a large adult sized-couch these guys are sitting on.  They’re that big.)

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The other day my 4 year old niece came to visit and was delighted with Rutherfurd, promptly hugging him and crawling up in his lap.  She crawled behind him and here’s a 9 second video of what happened:

(If you’re having trouble viewing the video here’s the direct YouTube link.)

Hope you have some fun stuff like this to focus on.  Makes such a difference.

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Living Incurably has to start somewhere – OR – What I heard eavesdropping at the tip of Cape Cod

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Christopher and I are in Provincetown, MA for Thanksgiving.  For those of you not familiar with the area, Provincetown is at the very tip of Cape Cod.  Fortuitously, very few places were open and we ended up having our Thanksgiving meal at a very unique restaurant called Napi’s.  During the second half of our meal, Napi himself was sitting behind our table visiting with other patrons and I listened in as he told the story of the beginnings of the restaurant 4o or so years ago.  Napi built the restaurant room by room purely with materials from the salvage yard, which is why the interior of the place was so frickin’ cool – wood beams that use to be the skeleton of ships, swirly brick walls, and these stained glass windows behind the bar, which I couldn’t stop staring at but at the same time felt myself blushing at the would-be horror of the elder churchgoing women in my family:

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In the beginning, Napi used salvage yard materials for a very practical reason – the bank wouldn’t grant him a loan to buy any new materials.  “Best thing that ever happened to me!” I heard him say.  Which brings me to something I pinned on the Living Incurably Pinterest board just the other day:

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When life feels stalled out – like mine did for the greater part of my twenties –  we’ve got to start somewhere to get anywhere.  Napi started in a salvage yard.  I’m guess if we don’t start somewhere and just let other people’s decisions (or our own illnesses!) default our own, then our lives will end up the metaphorical Applebees sitting on the site of what should be another brilliantly unique Napi’s.

Signing off from wintry Cape Cod feeling, as always, slightly embarrassed about all my dreams but yet still dreaming them.

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Living Incurably copes with condition by crafting – aka – fatigue, fogginess & finger work

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If you’re hesitating over my post title, I want you to know that “finger work” does indeed apply to crafty-type things, not just to musical instrument type things – I was a little hesitant myself, but I needed an “f” word and, to my delight, some lady on Pinterest named an arts & crafts board “finger work” so thanks to random lady with not a shred of actual vocabulary authority, that was the end of that.  Bless the internet and our willing ability to find confirmation of anything we want confirmed.

Ahem.

This fall I’ve been having trouble with increased amounts of wooziness, fatigue and fogginess.  So any hopes I harbored for becoming a Chess Master or getting a PhD in Macroeconomics have dampened.  Which is fine, because those hopes were pretty much nonexistent, but what I would like would be to get out of the frickin’ house, substitute teach 2 days a week, and make some extra money.  In the mean time, I’ve turned to…crafts.  My 18 year old self in an ill-fitting power suit who looked down on women I thought were trapped in a domestic lifestyle would cringe.  Whatev.  I’ll take you on a tour of the nifty things I’ve been making.

It started with this Pinterest pin of how to make a wreath with your seasonally colored scraps of cloth:

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I had a bunch of hand-me-down Christmas cloth and certainly had one of those annoying wire hangers, so this happened:

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Then I used some small embroidery hoops to make little wreaths:

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So then I moved on to this pin of a related craft,

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So now I’m making a bathmat, which is time consuming idiot-work but is going to be SO soft and squishy on my bare feet. I’m using 5 different flannels, this rubbery mesh stuff sold by the yard in the fabric department, and this hook I had left over from a hair highlighting kit.  (If you’re not in the mood for blond highlights, I imagine a small crochet hook would work too.)

Now I know some very supportive people out there will say, “You could sell these!  You could make money!” and to this I reply, “No.”  That’s the whole point of it – I’m doing this because I’m very tired and a little muddled.  Deadlines and expectations aren’t working very well for me right now.  Plus the product is far from perfect.  If I was energized and clear-headed enough to be creating a flawless art, I’D BE AT WORK, where I want to be, making money and disciplining educating the young people of the great state of New Hampshire.  But I can’t, so I’m not, so I hope you enjoyed hearing about my bath mat.

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Frank Lloyd Wright & Living Incurably while separated from the action

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This past weekend we took advantage of our gifted family membership to the Currier Art Museum and went on a tour of the Zimmerman Frank Lloyd Wright House owned by the museum.  The Zimmermans were a couple residing in Manchester, NH who longed for a very different kind of house.  They contacted the famous/infamous architect Frank Lloyd Wright in 1950 and he designed for them a small, easily maintained house with a very unique atmosphere to it.  Zimmerman was exceedingly detailed and controlling but I could easily see the genius to his design.  His goal was to design organic structures that existed within nature instead of imposing on it.  Every tiny facet of the house was built and arranged exactly how he wanted it in order to achieve that feel and functionality.  But here’s the crazy part – Frank Lloyd Wright never set foot in the state of New Hampshire.  He was working on other projects at the time so he sent staff up to photograph and document every inch of first the piece of land, and then every inch of the building process.

The fact that Wright created this now historical piece of artwork from afar really stuck with me.  I’ve always desired a successful career, but now that I’m sick I feel separated from the action most of the time, physically, socially, and sometimes mentally.   I’m not saying I’m longing to return to my D.C. days on Capitol Hill, but the ambitious part of me wants to have my hand in something successful.  There are exciting opportunities here in NH, but most of the time I feel separated from that world as well because I’m always home, exhausted and hurting from something like a measly trip to the grocery store.

But to be able to create a success while physically separated from the action, that’s a notion that intrigues and motivates me.  Because the way things are right now, that’s my only option for any kind of interesting career success.  I’ve got to make it happen right here in my house with my iMac, heating pad, my prescription medications and a schedule that allows for rest the instant it’s needed.  I’ll accept that as a rundown of the limitations.  Luckily, I’ve never had a problem knowing what my strengths are and I happen to think they outweigh the former.  I get the feeling good ole Frank had a similar ego.

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Laughing, crying, and living Incurably

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Check out this post over on Stupid Dumb Breast Cancer.  As I’ve previously written, the second meaning of the word “incurable” describes a person who won’t be altered by their circumstances.  Ann Marie is “living incurably” and that’s what I’m shooting for in my own life.  To live the vibrant, colorful life I always planned on, despite all the medical bullshit.  I guess you all are on that journey with me and I appreciate that as much as I appreciate Ann’s Marie’s motivating article.  These screenshots will lead to her blog, click on them and check it out:

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Have a great start to your week and if you have the equivalent of sparkly high heels, throw them on and wear them with gusto.  Little colorful actions like that weaken the demons of chronic illness.  Plus it’s just fun to wear sparkly things.

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Thank God I’m not the only one who admits to angry (secret) speeches

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Fabulous article by Kate Baer on asking for help.  My favorite part:

“Ask for help and you will no longer need to slam cupboard doors to get your (secret) “point” across. The speeches I’ve rehearsed during angry cleaning are such a waste. I could have been listening to a podcast.”

You’d be amazed at the speeches I’ve thought up while angrily cleaning.  So guilty.  But working on it!  I’m going to go download a RadioLab podcast right now, come to think of it.

Check the full article out and give it a Like or a Tweet.  Sometimes I imagine that she and I are friends and we get together and gab about our blooming writing careers.  Except that hers is actually already blooming.  Fun to follow anyway.

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Incurable?

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Screen Shot 2014-11-06 at 9.08.39 AMHave you checked out the new text on my home page?  It explains what the heck I mean by living “incurably.”  So if by chance you’ve been reading this little blog without knowing what the title of it actually meant, here’s a little intro explanation:

I’m a little fascinated with the dual meaning of the word, “Incurable”

Most people use the term to describe a disease or condition unable to be cured. A bad thing. But our good fortune is that it can ALSO be used to depict a person who won’t be changed by their negative circumstances. A person who is determined to thrive despite their limitations. A person living vibrantly and with gusto despite having a chronic illness. A very good thing.

There’s also a longer explanation in the intro of my little book.

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I bet you can help me

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Below are some of my goals for Living Incurably.  I’m looking for suggestions/tips and I bet you can help me.  If you have any thoughts that might be helpful, I urge you to comment below or send me an email at ajkneeland@icloud.com.

Increasing the readership of this blog. Any web tactics that have made your blog more visible? How to publish a “guest post” on someone else’s blog? What have I not thought of?

Publish articles/columns. I’m already familiar with The Pillow Fort digital magazine, Everyday Health.com, and the Huffington Post Health Blog.  Where else can I look into?

Thanks very much.

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Living Incurably on a budget, Part IV

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Not since Scarlett O’Hara tore down the curtains on the ruined plantation of Tara has such a clever wardrobe hack been pulled off.  I recently attended a special sale at my favorite local thrift store where you paid $10 for a bag and got to keep anything you could reasonably fit inside.  One of the many clothing items I crammed into my bag was this black skirt.  It’s mid-calf length with a cut that suggests a slightly full and swishy 1950s skirt.

IMG_0394Now this is a party dress that I bought at H&M two years ago.  I love the sparkles but the skirt is way too short, even with opaque black tights.

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But you know what this tulle too-short bottom half IS good for?  Giving my high-waisted black skirt a little more volume and swish.  Throw in a wide red belt I got at H&M 4 years ago and I do believe we have the illusion of a tiny waisted dress.  Here it is put together on the bed.

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This holiday season when I pair it with some little black shoes (and maybe some nude compression tights!) I suspect I may be able to pull it off as a “dress” instead of 3 random items I wouldn’t wear otherwise.  Now looking forward to the holidays.

You can find past chapters of “Living Incurably on a budget” here:

Part I,  Part II,  and  Part III

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The Pain Test

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Interesting article called “The Pain Test” about the ethics of believing how much a pain a patient is in over at Vox.com, a news site I’ve never visited before.  I was directed to the article by a Facebook post by the U.S. Pain Foundation.

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Living Incurably Compressed, Part I

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I was fitted for my first pair of compression stockings this week.  My electrophysiologist cardiology guy recommended them strongly to help reduce the symptoms of POTS – the idea is that compression on my lower half will keep more blood volume in the upper half of my body, which results in less dizziness and wooziness.  So my prescription was sent to this medical supply company (locations all over NH and VT) and my first pair came in.  Here’s my thoughts so far:

  • I think I’m going to call them “compression tights.”  “Stockings” just feels a little too medical and a little too elderly for me.
  • I was surprised that they had me purchase this pair of extra grippy gloves ($8) for hiking the stockings tights up with.  They do work well, but again, it really puts it in your face, first thing in the morning, that you’re wearing something medical.
  • I really like opaque black tights so you can’t see my skin at all, and this pair was a little sheerer than I’d like.  They’re looking into a more opaque tight for the next pair.
  • I’ll get this amount of sheerness in a nude-ish color so I have a pair that looks like nylons as well.
  • They really do look like regular tights/nylons, but they feel less soft and flexible.
  • I’m a little worried that my fibro sensitivity won’t agree with wearing them all day, but I will keep you posted.

 

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Dependency can cause bitterness, aka, When not working is not working for your relationship

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Helena Madsen of Chronic Marriage was kind enough to share with me a guest post she wrote titled, “How are you doing reconciling illness, work and marriage? over on Rosalind Joffe’s site, “Working With Chronic Illness.”  The timing of the article felt serendipitous, as just last Wednesday I had an epiphany regarding my relationship, my lack of full-time employment, and my…bitterness.  I was in a counseling appointment, and to make a long story short, I realized out loud that it’s not Christopher’s fault that I’m financially dependent on him (he pays all of the…what’s it called…oh yeah, RENT) and that my deep-seated resentment of my circumstances tends to get directed towards him in an I-am-so-angry-that-my-contribution-is-housework-and-you-get-to-work kinda way.

I’m not resentful of the arrangement itself, it’s a smart, practical arrangement because housework allows for naps, stretching, heating pad breaks, and not having to drive (because we all know there’s moments where it’s safe to fold laundry but so not safe to get behind the wheel of what could be a dangerous weapon).  So it’s not the arrangement, it’s that I feel very limited, which in turn makes me feel trapped, which in turn makes me feel panicked and angry and embarrassed.  And I worry all the time that he thinks I’m lazy and that he doesn’t think housework is at all comparable to paying rent.

He’s such a generous man that when I try to discuss what I see as our arrangement, he says things like, “Whatever! I don’t care about the money.”  The problem is, I do care about the money, about my lack of  half the rent.  I do care that I can’t use my graduate degree and be able to hire a nice cleaning agency to clean the bathroom and dust all the dusty things in my house.  But there’s “caring” about things, and there’s not letting go of things as a form of pouting and being a victim.  And that, folks, is where my faults lie.

 

 

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Living Incurably Moments

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Part of “living incurably” is mentally highlighting the moments where you weren’t sick, the moments where you were able to forget you were sick, the moments where you had a good laugh or finished a projects even though you were sick.  Highlighting these moments, giving them more weight, is a form of denial but, I think, a very healthy one.  If these moments are the vibrant colors in your memory, and the weaker, sadder, torturous, hellish, or just plain monotonous moments  are downgraded to grayscale, maybe eventually some of them will fade away.  Perhaps with the colorful moments at the fronts of our minds, we will unconsciously make choices which attract even more of them into our lives.

 

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Withdrawal. Not the kind involving a bank.

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I lay in my hotel room last night feeling crazed, miserable, hot & cold all at the same time, My limbs were stretched out so that no part of my body was touching another part of my body because skin on skin contact was torturous in a sunburn kinda way.  What the hell was going on?  I finally put the facts together – I was in withdrawal.  Three years sober, goody-twoshoes me.  And you know why I was sure of it?  This wasn’t the first time this had happened.  Sometimes we forget that while prescribed, chronic illness medications are still “drugs” nonetheless.

What happened is I had made a stupid mistake when distributing my pills into their pill boxes about 3 days previous to my current getaway.  For those 2-3 nights I had been taking a double dose of an older TCA antidepressant which I was prescribed years ago to help with pain and sleeping.  (Oh yeah, and it helped with the depression I didn’t realize I was experiencing at the time.)  After these 2-3 nights, I realized my double-dose mistake because of the extreme dry mouth and headaches I was experiencing, and figured well, I’m glad I didn’t go a whole week without realizing my error.  A day and a half later, the dry mouth ceased and I thought I was in the clear.  Not in then slightest.  Turns out my body didn’t like me suddenly halving my dose any more than it liked me doubling it.  Duh.

So, there I was, on vacation, mentally and physically miserable, experiencing drug withdrawal.  All over a “mild” anti-depressant.  Damn it all to hell.  After I took an extra half-dose to implement the overdue weaning-down process, I felt physically better but emotionally like garbage.  Scared, ashamed, dependent.  And then – and here’s the kicker, folks –  I was trying to distract myself by reading the Huffington Post on my phone and I came across an article featuring this girl who I lived near my freshman year of college.  And how she is, like, an amazingly successful (yet ethical) entrepreneur in New York City.

I scowled at her beautiful head shot.  I forced myself to read about her exciting career and her inevitable place as an inspiring role model for young women, two things I always wanted for myself.  But instead, I have part-time work that doesn’t really add up to a career and miserable withdrawal symptoms because apparently I can’t handle the complexity of a prescription changing color.  “Loser” is a rather pedestrian and overused word but I’ll go with it anyhow to describe how I felt about myself in that moment.

After aggressively switching to my Pinterest app (I’d had enough of the Huff Post – wouldn’t want to risk coming across news of a former grade school classmate living in Paris running a U.N. relief agency or something) suprisingly I somehow felt pretty much clear of the I have achieved way below my potential pit of despair I had, just 20 minutes before, been teetering next to.  Quite a shocker to escape that plummet.

Maybe my quick recovery shows that after everything I’ve been through, I’m now secure enough to understand that I am where I am, and there’s nothing to be done about it but flourish the best I can in my little part of the world and everything will work out.  But probably in that moment it had more to do with the missing anti-depressant that was now dissolved into my bloodstream.

I’ll implement some new precautions to prevent dose mistakes from happening again.  But I’m giving some credence to the first explanation as well; I’m just gonna flourish the best I can right here.  Because if all I can do today in order to “live incurably” is put together a fun outfit that motivates me to move past the fatigue and discomfort and manage to get out of the house, then that’s what I’ll do.  The fashion “pinners” on Pinterest have no idea they’re key to a chronic illness survival philosophy – providing inspiration when this sick girl thinks she won’t make it out of bed.  A thank you to them for that.  Maybe, if I keep at it, someday I’ll be like them, and unknowingly help someone else get inspired to conquer something difficult.

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Living Incurably Solutions

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After this post, I’m heading down to the basement to fetch 1/2 of a Memory Foam type mattress pad rolled up sleeping bag style and secured with – I think – duct tape.  We’re going away for 2 nights and unless the hotel beds have crazy good mattress toppers, I’ll be unrolling my own softness on my side of the bed.

I used to prefer a firm mattress, but if you have chronic pain and/or nerve sensitivity that makes sleeping on a firm mattress rather torturous, you’ll understand why I made the switch.  When I moved in with Christopher, I tried to convert him to my soft sleeping preference.  He wasn’t a fan but came up with an ingenious yet simple solution – he cut the damn thing in half.

Our 1/2 and 1/2 bed and Gil Pender’s tail. He has decided to stay neutral and sleeps on both sides of the bed equally.

Now half stays on the bed all the time and half lives in the basement  and goes on trips with me.  It’s a hassle to bring along, yes, but if it ensures good sleep, then there’ll be less I’m-feeling-woozy-we-must-leave-now hassle.

I’m sharing this because I never would have thought of the Duh, Cut It In Half Solution, and wanted to to pass that along to anyone out there who might be as dense as I am sometimes.  Hope it’s helpful.

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Living Incurably on a budget, Part III — or as I like to think of it, How to survive on Social Security with a little style

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Let’s talk about three “d” words.  Disability, dishware and the Dollar Tree.  It’s hard being sick.  Duh.  But it’s especially hard being sick and broke, because you can’t take on the 1.5 side jobs on top of a regular full-time job that you normally would to make the money to earn rent, buy underwear, and maybe occasionally go away for the weekend.  So your illness has disabled you, and you’re trying to survive on a pittance.  (Not that we’re not grateful for that pittance, Uncle Sam!  Very grateful!  Not complaining.  And only spending it on the essentials, never anything frivolous.)

Lucky for you, I have a great lead on dishware for you.  From the Dollar Tree, which has locations all over the U.S. and also takes orders online.  I bought these plates for $1.00/plate  2.5 years ago and they’re still going strong.  Mugs and bowls, also $1.00 piece.  I get drinking glasses there too, but due to my natural clumsiness/medication-induced clumsiness I break glasses constantly so I can’t report on how long-lasting they are.  Visit frequently and you’ll find different colors.  On that same point, if you find a color you like, buy in bulk because they’re probably won’t be anymore next time you come back.

 

 

 

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Living Incurably on a budget, Part II

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I’m rather proud of my money-saving prowess when it comes to stationary.  In a boutique or gift shop, these small packs of stationary could cost you $8.00 or more.  But I keep my desk drawer stocked with these lovely cards which cost me $1.00/pack (8 cards in a pack).  I found all of them in the Dollar Bins at both Michael’s and Target.  So at $1.00/pack, with the competitor prices at $8.00/pack I figure I saved myself $28 on the stationary below.

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Unfortunately, as many of you probably are probably familiar with, most of the time there isn’t actually $28 to shopping with.  There’s $28 which is already allotted to pay for something really boring, like car insurance.  But the bargain satisfies, none the less.  xoxo

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Why the horrendously unrealistic “Red Band Society” can be a good thing

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Disclosure:  I haven’t seen the show I’m writing about, “The Red Band Society” a drama on Fox about chronically ill teenagers who apparently live the life of…not chronically ill teenagers.  I’m skipping right over that seemingly important part because what has interested me is the reaction it is causing.  This September 12th piece entitled, “Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all” in The Washington Post written by Yale University student Lillie Lainoff is an impressive opinion piece that illustrates the many ways the show is absurdly unrealistic.  Ms. Lainoff has been dealing with the autonomic nervous system disorder POTS since her very early teen years and, understandably, is insulted by how the show makes chronic illness seem like a glamorous experience.  She writes:

“Red Band Society” is being lauded as a departure from the idealization of teen chronic illness and death in recent young-adult books and movies such as “The Fault in Our Stars” and “If I Stay.” Merrill Barr writes in Forbes that “what audiences will immediately take notice of in Red Band Society is its willingness to not sugarcoat the reality of the patients’ various situations.” But based on the pilot, nothing in how the patients are portrayed is realistic. The viewer never sees a character taking medication, going through a treatment or doing anything that a typical patient does in a hospital.

The New Yorker reviewed the show in its September 15th issue and didn’t have anything kind to say about it either.   Along with pointing out some of the most painful lines of the first episode, (“Everyone thinks that when you go to the hospital life stops.  But it’s just the opposite: life starts,”) the review shares the view of Ms. Lainoff that it was a “commercial gambit” designed to play off recent and very popular young adult fiction and the resulting movies:

The show mines a primal adolescent fantasy: that sickness might be a form of glamour, making a person special and deeper than other humans.

While it sounds like the writers of the show have never had an illness lasting more than 5 days and were most inspired by marketing projections, I can be at peace with that.  First because Hollywood glamorizes everything.  Hell, if they can glamorize prostitution in Pretty Woman (how many women have told themselves that Julia Robert’s week with Richard Gere didn’t count as whoring because they ended up as a legitimate couple together in the end?), of course they can figure out how to glamorize chronically ill teenagers.  Second, would pieces like Ms. Lainoff’s – a young person sharing their experience of chronic illness – have gained so much attention without the insipid “Red Band Society”?  Discussion is occurring about chronic illness from college dorm rooms to national newspapers and magazines.  That’s a good thing.

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Living Incurably on a budget, Part I

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Yesterday I took a cupcake decorating class at JoAnn Fabrics.  It cost $10 and was an hour long which I think is the perfect length of time for someone who wants to get out of the house but doesn’t have the stamina for long outings.  (And it’s also a pretty decent price for someone who isn’t able to work full-time.)  You bring your own cupcakes and share the classroom with a small group and it’s really quite pleasant to visit while you decorate.  I checked with Google Maps and there are JoAnn Fabrics all over the U.S., and possibly non-chain options in your area as well.  I hope some of you get to try it and enjoy it as much as I did.  It’s surprisingly easier to do than I expected.  Here’s 2 of my creations.

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Scarves and crying wolf about our illnesses

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I’ve taken to wearing scarves on the back half of my head, wrapped around my neck.  Strangers have complimented me but I expect after a couple more times family and friends are going to get inquisitive.  Scarves and bold fashion aren’t too common in the great state of New Hampshire, and they’ll probably be worried that I joined some kind of New Age religion over the internet without telling them.

Now I’m one to prepare a defense beforehand and I hate to admit it, but I have considered crying wolf about my illness.  “It hurts my arms so much to blow dry my hair,” I could say helplessly.  Which is true.  It does hurt my arms to blow dry, and even shampoo my hair.  But that’s maybe 1/6 of the reason I’m covering my head and to claim illness as the sole cause would in fact be crying wolf.  See this Wikipedia.com article about “The Boy Who Cried Wolf” if you’re under 22 years old and therefore unfamiliar with this fable.  Kids these days.

Crying wolf about our illness is easy to do even unconsciously, and let’s all admit that we’ve done it at least once.  Housework, schoolwork, jobs, social events, and errands could be a few circumstances where we excuse ourselves by exaggerating, just a little, that our illness is the main reason we’re gonna cut and run.  Chronic illness so througohly permeates all aspects of our lives that it is almost always there lurking during decision-making time.  However, claiming it as the main reason when it isn’t makes you the little boy and your illness the wolf.  And we all know why that’s a bad thing – after a while people start to distrust you and then when you really need them to believe you – well, you get eaten by a wolf.

In addition to losing the trust of people, I also believe you can lose a little of your personality as well.  We’re still people with dislikes, laziness, and preferences.  Maybe you hate the fact that your in-laws only serve olives at their get togethers.  Or you need a day off from studying for the SATs.  Or you just really want to take a personal day to go shopping.  These were aspects of you before the illness, so speak the truth now, and help preserve the greater body of your personality.

So my non-wolf reasons for this phase of head scarves?

  1. I think scarves are pretty and I feel pretty in them.
  2. I like doing something different here in little NH.
  3. I have a peculiar little theory that I get to keep more of me the days I wear a head scarf.  Like my strengths are more safely contained inside, as opposed to evaporating away.  I suspect the psychological base of this theory is that when my head is uncovered I spend a ridiculous amount of time looking in reflective surfaces and/or worrying about how my hair looks, and wearing a scarf is training me to not look as often, which frees up time in my head to think about more creative pursuits as well as being more engaged with my interactions with people.
  4. It does hurt to blow dry my hair and the scarf helps to mitigate some of that.

Here’s me as well as a fashionable lady pictures found over at www.newtress.com and www.headscarves.blogspot.com, as well as the 3 new scarves I just splurged on at Old Navy where, at 40% off this week, each scarf was about $8.

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Wellbutrin and the value of having a diverse medical team

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If I wasn’t a substitute teacher and the daughter of a ladylike lady, I would be tempted to write a very candid post about a certain medicine that can counter the unwanted side effects of many anxiety/antidepressant medicines.  I wouldn’t name these “unwanted side effects” because they relate to the boudoir.  And that would be shockingly unladylike.  But many of us know that if even if you have chronic pain, there is one place on your body you would like to feel things.  Boudoir things.  And suprisingly, this unnamed prescription, which is typically used to treat anxiety/depression/nicotine withdrawal, can act as a counterweight and actually get some feeling back to these boudoir areas of the body.

I risk sounding unladylike because of my greater point:  my Primary Care Physician didn’t tell me about this nifty little trick.  None of my specialist MDs told me about this.  My counselor, who does not even prescribe prescriptions, but who is excellent at taking all the crap that people vent to her about and finding solutions, gave me this handy information.  The greater lesson of my anecdote is that sometimes the professionals who actually spend a considerable amount of time with their patients, even if they have less legal authority in the field of medicine, are incredibly valuable. 

And dare I risk sounding unladylike again, but I’ll tell you this:  My fiancé owes my counselor a thank you note.  Her tip worked.  (For me, at least.)

Note: This is NOT medical advice.  I am NOT recommending that anyone take a new medication.  I am making a point about the value of having a diverse medical team.

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Off-Label Prescriptions

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Paul Gileno, of the U.S. Pain Foundation, published this letter in my local Concord Monitor.  He discuses a new state law that will go into effect this month that prevents insurance companies from mandating a patient try other (read cheaper) prescription drugs (ones that are not listed by the FDA as treatment for your condition) before they will pay for the medicine that you and your doctor know you actually need.  Interestingly, it also prevents insurance companies from refusing to cover a prescription that is also not listed by the FDA as a treatment for your condition, but that you and your doctor know is best for you.  Sounds like NH legislators did a thorough job with their research.  Well done.

(On the lighter side of the off-label issue, remember the episode of House, MD where House is called before a furious Medicare judge who wants to know why he prescribed Viagra to a 70 year old woman?  His answer was that it lowers her blood pressure.  And apparently he wasn’t wrong – Harvard agrees.)

Letter: New law protects patients

Prescribing medicines requires extensive medical training, clinical experience and direct knowledge of a patient’s personal medical history, all of which is best understood by a patient’s own health care provider.

But that doesn’t stop insurers from trying to interfere. I should know. I’ve been battling health insurers almost as long as I’ve been battling pain – nearly 12 years.

Yet, insurers still find ways to astonish me with schemes that put dollars over patient health. Luckily for residents of New Hampshire, a new law goes into effect this month (SB 91) that will help protect patients from an especially egregious cost-containment practice: forced off-label prescribing.

Forced off-label prescribing occurs when insurers require that patients try and fail on one or more prescription medicines that are not approved by the Food and Drug Administration for the treatment of their medical condition before granting access to those that are. Insurers require this extra step not because the off-label treatment is better, but because it is cheaper.

New Hampshire’s new law protects patients living with pain and other medical conditions by putting restrictions around this practice.

Of course, off-label medicines are often the best option for patients. Just ask anyone living with cancer or an autoimmune disorder.

The new law also limits insurers’ ability to refuse coverage for off-label use when prescribed by a health care provider. The bottom line is this: Providers must have the discretion to prescribe the medicines that are best for their patients, not an insurer’s balance sheet.

PAUL GILENO

Middletown, Conn.

(The writer is CEO of the U.S. Pain Foundation in Connecticut.)

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Living Incurably Calls for Inspiration

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In my effort to be the best little blogger/writer I can be, I’m discovering how important inspiration is.  Not in the sense that I’m finely skilled painter who sees an idyllic chapel on a rolling hillside and says, “I MUST paint this!” but in the sense that little things here and there give me ideas for posts and essays, or at the very least, encourage me to keep at it.

On this fine Friday, here’s a few things that inspire me…

Other people pursuing their goals/interests. My fiancé does freelance writing for a NH history magazine, called Rediscover New Hampshire. I’ve even mentioned in this particular article, which I find very romantic.

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Getting the heck out of town sometimes.  Especially when wearing my favorite wardrobe choices.  This summer Christopher and I visited Stowe, VT and what a great town.  On a whim we stopped at the West Branch Gallery and Sculpture Garden. I really liked it there.  I also really liked my outfit that day.

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My living environment.  I find sharing a house with Christopher is often inspirational because besides his writing, he creates these amazing art projects seemingly out of nowhere, masters them, and then moves on to something else.  Here’s a product of the summer he took up spray paint art

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and here’s a plain wooden chair that he made a whole lot more interesting.  There’s a matching coffee table as well.

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What inspires you to pursue your interests?  Or even just to get out of bed in the morning?  When you’re chronically ill sometimes that’s the crucial first step.