Friday, January 27, 2012

Pain + Insomnia = Painsomnia

I take pain meds as rarely as I can manage.

And much of the time, I can manage my days without pain meds, relying mostly on distraction (even when the pain is bad enough that I can't concentrate on reading a book, I can watch a movie from a DVD borrowed from the library or find something on cable's On Demand menu to get outside of my own head for awhile) and/or ice. (Heat just makes my joints achier so I'm not a fan of it. But oh, how I love my ice packs!!)

Nights are harder, because once the lights are off and Scott is asleep (I so envy his ability to fall asleep quickly!), there's nothing to distract myself from the pain. And oh, does it make itself known. And that makes it hard to fall asleep, as I toss and turn trying to find a position that doesn't make my body complain loudly.

I guess it's a pretty common phenomenon. I mean, I know it wasn't unique to me, but I was surprised to learn on Twitter recently that there's even a name for it: Painsomnia. No, it's not a real medical term -- although I bet there is one for it -- but it's something that patients have nicknamed. 

More often than I wish, I end up getting out of bed, where I sleep with five pillows helping to support various body parts on top of a four-inch-thick memory foam mattress pad, and heading downstairs to sleep on the couch that replaced my literally falling-to-pieces recliner. (The couch is awesome and reclines electronically at the push of a button!) Sleeping on the couch lets me avoid hip and shoulder pain from lying on my side in bed.

Sometimes, like tonight, even that doesn't work. So I do the internal debate on whether to take a pain pill or not. I'm not sure why I torture myself over it, other than a belief that pain meds work best when taken infrequently to keep my tolerance levels down. Then when I do take a pain pill, it reminds me of Ellie's birth, when I finally opted for an epidural after 16 hours of Pitocin and 36 hours after my water broke and I wondered aloud why I'd thought it was so important not to have one. (And about 8 hours after the epidural, Ellie was finally born!)

The other problem is that pain meds seem to act as a sort of stimulant for me; it's not that they make me feel full of energy so much as I just can't fall asleep. Which means I get to appreciate how well my pain levels are being controlled by the meds but I don't get the sleep that I want. (Which, oddly enough, also mimics my childbirth experience since I opted for the epidural mostly in hopes of getting a nap since Ellie was taking her sweet time in making an appearance. It didn't actually work for what I sought, which was sleep, but it sure made the labor/Pitocin pain disappear for awhile.)

So if I do take a pain pill late at night for the Painsomnia, then I end up contemplating taking an Ambien. But even though I've had both administered together while hospitalized, I'm too afraid of mixing those meds at home. Too many celebrity deaths where they point to the mix of prescription and non-prescription drugs as the cause add to my leeriness of taking a sleep aid and a pain pill at the same time.

Well, I'm definitely rambling here. Mostly my point was to share what I thought was a really cool word for a situation I've struggled to describe and explain. Thanks for letting me ramble. :) 

Wednesday, January 18, 2012

(Not Even Close To) Wordless Wednesday

Back in November, I posted asking for suggestions on what I could do with little bits of cool metallic fabric called "tissue lame" (and that last E needs an accent mark on it, but I have no clue on how to do that on Blogger!) that were too pretty to throw away. 

My Aunt Marsha suggested I put them into fancy glass bottles, and well, it was following up on that suggestion that led me down the path to a crafty (supply) powder room:

Technically, I started with the plastic jars (from the cashews my husband gets at Costco) on the left, then the salsa bottle on the far right. But then I started looking at some of my other craft supplies and wondering why I was hiding them all away. So I decided to use the glass jar that Ellie had gotten some candy in a couple years ago for the holidays (William-Sonoma uses the cutest curvy bottles!) for some rhinestones. After all, they're so pretty, they ought to be on display. 

Then I started looking for glass jars in a variety of places and finding that I had lots of stuff to display! The round jar, second from the right above, holds my felt "spaghetti," strips of felt that I glue on hair clips to cover the metal. 

And, well, I had to expand past that one shelf:

An Appaloosa pony Ellie made at camp last summer guards the jewels.
On the top, I have beads, fancy rhinestone buttons, regular buttons, a tall jar of spools of thread, small jars of 15mm rhinestones, and a ginormous jar of different kinds of hair clips waiting to be transformed.

What do you think? I kind of like using my supplies as decor ... although I'm not sure how inconvenient it's going to be to have my thread collection up in that jar. We'll see! (Thanks, Aunt Marsha! :)

Meanwhile, the super secret project that created most of those snips of fabric that inspired all this? I made roughly 100 butterfly and dragonfly magnets for family members for holiday gifts:

Inspired by the kanzashi butterflies from Diane Gilleland's book Kanzashi in Bloom: 20 Simple Fold-and-Sew Projects to Wear and Give

Monday, January 9, 2012

Looking Back At 2011

I'm not sure if it's just my general foggy memory or if it's yet another side effect of my chronic illness, but I can barely remember what I had for dinner yesterday. I definitely barely remember what happened in 2011. 

So I don't even really remember what I blogged about in 2011, much less which were my favorite posts. That's the challenge requested by Leslie of Getting Closer To Myself, who will host the next edition of the Patients For A Moment blog carnival. So here's my recap of the year that was.

Last January, in a post titled It's All About The Attitude -- Or Is It?, I wrote about how delighted I was about a New York Times article that cited studies showing that getting (and surviving) cancer were not affected by the patient's attitude. A kick-ass, conquer cancer attitude may help a patient deal emotionally with the treatments of the disease, but it won't raise that patient's likelihood of surviving it.

Also last January, I wrote a parenting post titled Judgement, about the snap judgments people make based on appearances, particularly when it comes to parents of young children. You can't tell from looking at people what they're dealing with. 

In March, I had the pleasure of hosting Patients For A Moment on the topic of guilty pleasures. That had to be one of the most fun topics, both to write about and to read everyone else's contributions! Actually, I was lucky enough to host PFAM twice last year, and I was also rather pleased with the edition I hosted in November on finding inspiration on how to pull oneself out of the dark places that chronic illnesses sometimes leave us. (Ooh, and while I'm writing about PFAM, here's a plug: I'm going to be hosting next month so please check back in early February to see my topic! And Leslie is still looking for more hosts for the now monthly blog carnival; check out the responsibilities here and drop her an email if you're interested. It's a wonderful opportunity to bring new readers to your blog and for you to get multiple viewpoints on topics that are close to your heart.)

In May, I came "out of the closet" and shared the news that I had been approved (two months earlier) for Social Security Disability. It's funny, I still have a sense of shame about being on SSDI, and it's not something I volunteer, even when asked if I'm working. Or why I'm not. I also have a bit of guilt, that somehow, by claiming benefits I earned, I'm contributing to the money issues our federal government is facing. I know it's somewhat irrational, but c'est la vie. I console myself by counting all the ways it's helpful to my family for me to be able to contribute financially however small an amount. It makes it possible for us to add enrichment activities to Ellie's life (she just started gymnastics last week, and, as you may remember, is learning to compete as an "artistic" roller skater {essentially doing the same things a figure skater does in ice skates}) as well as to pay for housecleaners once or twice a month to ease the burden on my husband. Most importantly, we once again have some pad in our budget; we weren't running up debt or even living paycheck to paycheck as many families dealing with disabilities caused by chronic illness, but I feared we were one disaster away from ending up in those black holes.

In October, I wrote about The Invisibility of Invisibility Chronic Illness, as it struck home, once again, that the only people who truly grok what it's like are those who are either walking the walk themselves or watching a close loved one walk it.

I'm a bit chagrined that it took me over four years to find out how useful a very common tool is for those of us taking many, many medications. Who knew there was a reason they have all those pill dispensers at every pharmacy? :) Ok, it wasn't an earth shattering post, but boy has my pill dispenser changed my life. And if I ever make it back to the dollar store, I'm going to follow my friend Mo's lead and buy three more so I only have to refill it once a month!

Although I have doubts that I've learned the lesson well enough to prevent it in the future, I finally recognized a trend in my life with chronic illness: I make poor choices when approaching and even when I've crossed the line to Too Much. Over and over again, not just in 2011 but since I started blogging in 2007, I keep writing about how days or weeks or even months didn't go the way I'd planned: The lesson I seem to be having trouble learning is to pay attention to my body and stop, or at least slow down, when it's clear that I've overextended myself energy wise or am headed in that direction. Instead, it's almost like I decide subconsciously that, "Ooh! I'm clearly headed for being bed- and/or couch-bound again, so I better try to get as many things crossed off my list as possible before that happens! Hurry up! Do more, because you don't know when you'll be able to do XYZ again!" And actually, I'm feeling the effects of having done just yesterday exactly what I wrote about in that excerpt. Sigh. 

Anyway, that's the year that was. Hope you enjoyed the trip down memory lane thanks to Blogger's archives of Sick Momma. Meanwhile, be sure to visit Getting Closer To Myself on or after January 15 to see everyone else's contribution to the blog carnival! 
And to my fellow bloggers, the deadline is midnight Jan. 12 if you'd like to participate; see the call for submissions for details.

Tuesday, January 3, 2012

Supporting Free in 2012

No, this isn't a political post of some sort about freedom. 

But I find a lot of inspiration, craft-wise and otherwise, from Diane Gilleland at Craftypod and so I'm taking up her challenge to not only support "free" in 2012, but to report on how I did it. 

The idea is that we all enjoy and benefit from the many blogs we read and podcasts we listen to. But it takes time and energy to put together good blogs/podcasts/etc, and giving something back to those who provide free content helps them keep going forward. (Diane is much more eloquent than I am, so go read her post that I linked to in the previous paragraph.)

There are lots of ways to support Free, ranging from buying from someone's Etsy store, using their "donate" button, clicking on a flattr button, using a blogger's affiliate links and probably more varieties that aren't springing to mind. 

In December, I used a variety of those methods:
  • When I bought Amazon giftcards for my nieces and nephew as Chanukah gifts, I used a favorite patient blogger's affiliate links. I try to never buy anything on Amazon without using someone's affiliate link since it doesn't add anything to my cost and I know no one's making a ton of money from blogging (with the exception of a handful of outliers).  
  • I spent a lot of time in December reading various articles from the Craftypod archives about running a crafty business, so I decided to click on Diane's donate button and show her a little appreciation. I can't tell you how delighted I was when she sent me an email telling me I'd made her day. Supporting Free feels good!  Certainly, her note back made my day.
  • I first learned about kanzashi flowers from video tutorials made by the folks at Joggles, which also helped me discover Diane Gilleland's book Kanzashi in Bloom. I'd always felt a little bit badly that they had expanded my world and I hadn't supported their business at all, so I've been looking for an opportunity to give them some of my business even though they aren't the discounters I usually patronize for craft supplies. I signed up for an online class they're offering later in January and also bought some paper supplies. It wasn't a lot of business to send their way, but I feel better for it anyway.   
Since the vast majority of blogs I read, and therefore want to support, are either patient blogs or mommy deal blogs, the main way I tend to support Free is via affiliate links. But I'll be paying more attention in 2012 to what I do, and will try to share it with all of you every month or so. If you decide to support Free, I'd love it if you shared with me in comments how you are doing so. 

Once upon a time, I had fantasies about earning money with my blog, but it has never panned out. I had Google ads on my blog for awhile, but never got paid because I don't think I ever "earned" more than a few bucks from them and therefore never hit the minimum for getting paid. Same with my Amazon affiliate links; I get monthly statements from them but have been carrying a balance of ~$6, not enough to hit the $10 threshold for getting an Amazon giftcard. Don't get me wrong -- I'm not complaining, nor is this a plea for money or for people to use my affiliate links to items on Amazon. I'm just intrigued with the idea of supporting, in however small a way I can manage, people who offer free content that I find valuable.