Friday, November 21, 2014

Let Sleeping Pugs Lie: lupus naps and how to take one

Now that you've had a chance to digest the sleep article from Monday's post, I thought I'd give you a little more motivation to get that extra shut eye you know you need. Way back when, I needed all the motivation I could get. And then some.

When I started my daily naps back in 2003, I was not happy about it. I knew I felt better after taking a rest in the middle of the day, and I could tell that my health was improving because of that break. But it wasn't a welcomed break from my day. After all, I had stuff to do. And it wasn't going to get done while I was napping.

But somehow, I managed to discipline myself in order to take that nap. And very quickly, the benefits of napping outweighed my resistance to stopping down for a nap.

In the beginning, a lot of people helped me stay on task with my nap. My husband for one was always encouraging and enabling me to nap. My family and in-laws came to the rescue many times - either via phone calls, emails, or if we were visiting, a nudge to go in the other room and rest.

But above all the rest, I had one all-star sleeping coach. A guy who never missed a nap. A guy who napped like his life depended on it. The original napping pug, Henry H. Gorman.


And when Henry went on to greener pastures, his brother, Darwin, the wonder-napper, took over for him. Darwin is, to date, the best, most considerate napper ever. (Henry insisted on taking the best spot in the bed. Dar? He just goes with it.)

Darwin, better known as Baby Dar, looks forward to our nap every single day. He doesn't wear a watch, but somehow he knows when it's time to go up to bed. If I'm late, I hear about it. If I'm trying to finish up "one last thing", he follows me around and paws at my leg until I head upstairs. He holds me accountable for our napping hour, to the point where I feel I never want to let him down. He makes it feel "normal" to nap everyday. He makes our nap something that I look forward to doing together. Thus, we nap side by side every single day, and he and I wouldn't have it any other way.

Now, I realize not everyone has a pug with whom you can share your afternoon nap. Not everyone
has a furry little companion who looks up at you with those big brown eyes, begging and pleading for you to please stop whatever it is you're doing so that you can nap. Not everyone has a pug-nosed motivational coach who snores within seconds of falling into bed, letting you know it's cool to do the same.

In the event that you don't have a sleep coach around (Henry would probably call what he did "life coaching", actually), here are some other ideas to get you to excited, motivated, and enthused about napping when you need it:

1) Carve out a space:  A friend of mine (with lupus) found that if she created a special place dedicated to her weekend (and occasional weekday) naps, she was more likely to take them. She allocated a small inlet on the top landing of her stairs where she permanently set up an arrangement of cushy pillows, blankets, and linens. It looked like a little room of its own, and she said that having that space ready at all times gave her the encouragement she needed to catch those extra ZZZ's.

2) Select a special blanket: Another strategy is to dedicate a blanket (or pillow) as your official "napping supply." Pick one of your softest, most inviting blankets (or splurge on one from a home store - the kind that you can't help but touch every time you see it), and use it only for napping. Keep it draped over the end of your bed, or on the back of the couch, or tucked away in a closet where only you can use it. And let the luxuriousness of that blanket actually lure you to sleep.

3) Use a sleep mask/white noise machine just for the occasion:  You can also set the stage so that the environment in which you're napping is conducive to sleeping. I LOVE using my sleep mask now and then, and I've just started turning on the fan in our master bathroom, which provides just the right amount of white noise to lull me to sleep.

4) Find a reason to rest: Maybe it's not an actual nap you need, as much as some forced down time. If that's the case, consider a magazine subscription, or a trip to the library to stock up on some good books. Winter is around the corner (or if you're in D.C., it's practically here!), and there's no better time to cozy up to a good book for an hour in the afternoon or early evening.  I know, I know. I used to think I didn't have an hour to spare, either. But if that hour of down time allows you to be a more mobile, happier, healthier human being, I say find the time and make the effort.

In their busy, busy schedule, somehow Henry and Darwin managed to make the effort and find the time. See below for some of their most valiant napping moments:






See??? I told you Henry ALWAYS wanted the best spot in the bed!

Wednesday, November 19, 2014

Pre-Thanksgiving Day Maddness! Take 30% of your Pillfold Colina purchase.

Love this couch, and the charcoal and pink color scheme!pink and grey baby shower | Visit seriouslydaisies.blogspot.com 


Hey - if #WalMart can do it, so can Sara Gorman's Pillbags! We're starting our #blackfriday savings early this year. Starting today, take 30% (yes, I said 30%!) off the Pillfold Colina.

Just type in "COLINA" in the discount code during checkout at Sara Gorman's Pillbags.


Wondering how the our stylish pink and grey #pillorganizer conveys to the fashion world? I'd say the color scheme fits right in. 


 Wow, pink grey and green Who would have thought 

Fuschia & Grey Bow Top <3

a perfectly simple, stunning peony bouquet
   cute pink accessories





*********************************************************************************


St. Mary's School Christmas BazaarAnd if you'd prefer to pick up your Colina Pillfold in person, be sure to stop by the St. Mary's Annual Bazaar this weekend, Friday, Nov 21st and Saturday, Nov 22nd. Just mention this post and save 30% off your Colina Pillfold!  

Details on the event are below, or click here for more information.

WHEN: Friday, Nov 21st (Preview Party - invite only, 7-9pm) and Saturday, Nov 22nd, 10-4pm. (Sat. is free admission.)
WHERE: St. Mary's School, 400 Green Street, Alexandria, VA
WHAT: The biggest Christmas shopping extravaganza on the eastern seaboard. (Okay. Maybe not the biggest.  But St. Mary's never disappoints!

Monday, November 17, 2014

The Power of Sleep: my new favorite article on one of my favorite things.


Sleep, as you know, is critical for me. I need a lot of it, and at

specific times during the day. It's paramount for my health and

wellness, and it's become an indispensable tool in allowing me

to stay healthy with lupus. That's why I

love this article titled "The Power of Sleep". It uncovers new

evidence that suggests that getting the proper amount of sleep

shouldn't be viewed as a luxury; it should be thought of as a

necessity. I couldn't have said it better myself!


Take a few minutes to read the article here - I really enjoyed

hearing about what my brain actually does while I'm asleep.

I'm going to start thinking of my sleeping brain as a big fat

street cleaner, sweeping up and clearing out all the debris so

that I'm able to think more clearly and efficiently.


If you're looking for a little motivation to start getting the extra

sleep you know you need, look no further. Read this article,

and it will have you shutting the lights off earlier starting today!

Here are some highlights below:

***
The Power of Sleep
Alice Park
Time.com


"...when the lights go out, our brains start working–but in an altogether different way than when we’re awake. At night, a legion of neurons springs into action, and like any well-trained platoon, the cells work in perfect synchrony, pulsing with electrical signals that wash over the brain with a soothing, hypnotic flow. Meanwhile, data processors sort through the reams of information that flooded the brain all day at a pace too overwhelming to handle in real time. The brain also runs checks on itself to ensure that the exquisite balance of hormones, enzymes and proteins isn’t too far off-kilter. And all the while, cleaners follow in close pursuit to sweep out the toxic detritus that the brain doesn’t need and which can cause all kinds of problems if it builds up.

The trouble is, sleep works only if we get enough of it.

Which is why, after long treating rest as a good-if-you-can-get-it obligation, scientists are making the case that it matters much more than we think. 

Health experts have been concerned about our sleep-deprived ways for some time, but the new insights about the role sleep plays in our overall health have brought an urgency to the message. Sleep, the experts are recognizing, is the only time the brain has to catch its breath. If it doesn’t, it may drown in its own biological debris–everything from toxic free radicals produced by hard-working fuel cells to spent molecules that have outlived their usefulness.

“We all want to push the system, to get the most out of our lives, and sleep gets in the way,” says Dr. Sigrid Veasey, a leading sleep researcher and a professor of medicine at Perelman School of Medicine at the University of Pennsylvania. “But we need to know how far we can really push that system and get away with it.”

And the cause of that sleep deprivation doesn’t always originate in family strife, financial concerns or job-related problems. The way we live now–checking our phones every minute, hyperscheduling our days or our kids’ days, not taking time to relax without a screen in front of our faces–contributes to a regular flow of stress hormones like cortisol, and all that artificial light and screen time is disrupting our internal clocks. Simply put, our bodies don’t know when to go to sleep naturally anymore."

***
All I can say to that is Keep calm and Sleep on! 

Friday, November 14, 2014

OTC bottles in the Pillpouch? You betcha!

I love hearing from Despite Lupus readers. It always reminds me that I'm not crazy for feeling the way I do, or for fretting about the things I fret about. All of a sudden, I feel like the most normal gal around...or at least like a crazy lupite who's not alone!

The same thing happens when I hear from pillbag customers. I know that my attempts to make my own life with lupus a little more bearable have resonated with someone else. That there are others who prefer the feel of fabric to clunky old plastic, or a colorful pattern to generic, sterile hospital blue.

So - when I heard from a pillbag customer earlier this week, who wanted a pillpouch to go along with her pillfold, it reminded me of my own pillbag combinations.

I'm currently using a Sebastian Pillfold and a Montego Pillpouch,




although I'm thinking of trying out the Pillfold Zoe/Pillpouch Trocadero combo seen here...


but the Pillfold Varsity is also calling my name. Decisions, decisions!



The customer asked a very specific question about the pillpouch, and I thought I'd share the answer, since it's come up before. The Pillpouch question of the day:

Can you fit over-the-counter pill bottles (like Tylenol or Advil) in the Pillpouch? And the answer is yes, you can! I took some quick pictures to demonstrate:

Note the two larger OTC pill bottles in an opened pillpouch, and then that same pillpouch closed.



If you ever have questions about the pillbags, fire away. It's always a pleasure talking shop! 


Wednesday, November 12, 2014

Living Well with Lupus: An Iterative process

I'm still learning. 

I'm still learning how to take care of myself.
I'm still learning how to make good decisions. 
And I'm still learning how to ask for help. 

But I am better than I used to be.

Developing skills to live well with lupus is, thankfully, a process that I’ve been able to build upon. They are skills, because they are abilities I must hone and practice over time in order to do them efficiently and effectively. Some will come naturally. Others are counter-intuitive. Still others I could only learn through trial and error. But I’ve had to work at developing them. And I’ve had to listen and learn. Every time.  

Oh, I've tried ignoring my mistakes. In my fourteen years with lupus, I’ve made the same decision over and over again, each time hoping for and expecting a different result. But that’s not the way a chronic illness works. At least not mine.
Today, I can actually tell you what will happen if I skip a nap. I can describe in detail how I’ll feel if I work until midnight one or two nights in a row. And I know the effects of over-committing myself (probably the most recently-attempted of them all) so well that I could write a book about it. (Okay...so that one was a gimmie.) But I know doing these things won’t yield the result I want. So I’ve learned not to do them. (At least most of the time.)
Taking note of this iterative process, and choosing to build upon the knowledge I’ve gained over time allows me to do things like:
Say no instead of yes next time; 
stay in instead of going out; 
rest instead of fighting fatigue; 
order in instead of cooking; 
opt for a leisurely way to travel instead of a crazy travel itinerary; 
book a babysitter instead of trying to tough it out on my own.

In fact, I think it's possible to not make the same mistake twice, which brings me to my current situation: 

Johnny has been traveling lately. (Please note: I’m not complaining. He travels so little, that I consider myself very lucky.) But because he’s in charge of picking up Deirdre from school every afternoon (which also involves taking Bernadette off my hands from 2:30-4pm), there’s some juggling to be done when he’s out of town.

So I juggle.

The first week he was traveling, I set an alarm at 1pm to remind myself to start the juggle. From 1pm -2:30pm, I set Bernie up with a movie while I rested. We then left to pick up Deirdre at school, returning around 4pm, where a babysitter was waiting to work until almost 6pm. I attempted to nap during that 4-6pm time frame, assuming that my earlier “rest time” with Bernie might not go so smoothly (which was correct). So while my hunch to hire the babysitter was a great idea, waiting until after 4pm to really start a good nap didn’t work so well.

So I juggled again.

The second week Johnny was traveling, I asked a friend of mine to pick up Deirdre from school. This allowed Bernie and I to have a full afternoon of resting, watching a movie, and resting some more. It was DEFINITELY better, but I still didn’t get enough real sleep during the afternoon.

So I rejiggered again.

Thus, we’ve come to the third week of Johnny's travels. In an attempt to build upon the knowledge I’ve gained, and in an effort not to make the same mistake again, I’m calling in the recruits. I’ve asked my sister (who could write an entire book about selflessly helping others), to watch Bernadette for two hours during the afternoon.

I’ll get a nap. At the right time. Without distraction.
I’ll be able to pick up Deirdre. Rested. Recharged. And in a good mood.
And I’ll have asked someone for help.

See??? I’m learning!!!



Friday, November 7, 2014

Wanna Plank?

Several of you have recently asked about my exercise regimen and whether or not I have one. Indeed, I do have a weekly workout routine, and your inquiries couldn't have been better timed. I've just added a new twist to my regimen, in fact, so I'll tell you about the standard routine, along with the newest addition in one post. How quaint! 

First, my current regimen: Exercise to me is essential for a healthy body and mind. It clears my head, makes me feel better about myself, gives me energy, is great for my skin, and keeps my joints supple. I try and work out three to four times a week, jogging on the treadmill for about 15-20 minutes each time. (I walk for two, then run for 13-15, then walk or run a little more, if I have time.) I go a total of 1.5 - 2 miles, which may not seem like much, but it works for me. 

And that seems to be the most important thing. I wanted to find a regimen that I could get excited about and look forward to...not dread or despise. People have made a lot of suggestions over the years ("Isn't yoga better for your joints?" or "Don't you have to go at least 20 min for any benefit?" Or even better, "I think three times a week for you should be plenty"), but I seem to be doing just fine on my own, following the cues from my own body. I like jogging, I like sweating and cleaning out my pores, and I like that feeling of accomplishment when I've finished. Some days, that seems like the only thing I get done, so it's a welcomed part of my weekly routine. 

That said, I'm always careful to listen to my body. When I'm hurting, I don't push it. If I need to stop and walk, I do. Interestingly, I do try and work out even when I'm not feeling so great, because it does wonders for my psyche. I never push my joints beyond their capabilities, but usually a quick run will do me some good. In fact, it often makes my joints feel better, and definitely serves as a distraction to those joints that aren't cooperating. If, however, I hop on the treadmill, only to realize my body can only run a few minutes, I walk the rest. I never do anything that would aggravate a flare, but often times, the thing that will most improve my flare, is a little exercise. 

I also try to sprinkle in a few push ups and sit ups now and again. But since I've had kids, I haven't been very consistent, though it's no fault of theirs. The girls LOVE to do exercises with me. It's just that I never give myself the extra 15 minutes to work them into my routine. Until now. 

This latest addition to my regimen is a short and easy one, and I'm liking it so far. Johnny and I are doing it together (which makes it that much more fun), and I'm anxious to see the results. I heard about this from Alexandria Stylebook, and jumped right on the bandwagon. 

So here it is - the 30 Day Plank Challenge. Want to join me?  


The 30 Day Plank Challenge will send your core strength through the roof! Yes, all you have to do is HOLD this position, nothing else! It looks pretty easy, but it isn’t!

Day 1 – 20 seconds
Day 2 – 20 seconds
Day 3 – 30 seconds
Day 4 – 30 seconds
Day 5 – 40 seconds
Day 6 – REST
Day 7 – 45 seconds
Day 8 – 45 seconds
Day 9 – 60 seconds
Day 10 – 60 seconds
Day 11 – 60 seconds
Day 12 – 90 seconds
Day 13 – REST
Day 14 – 90 seconds
Day 15 – 90 seconds
Day 16 – 120 seconds
Day 17 – 120 seconds
Day 18 – 150 seconds
Day 19 – REST
Day 20 – 150 seconds
Day 21 – 150 seconds
Day 22 – 180 seconds
Day 23 – 180 seconds
Day 24 – 210 seconds
Day 25 – 210 seconds
Day 26 – REST
Day 27 – 240 seconds
Day 28 – 240 seconds
Day 29 – 270 seconds
Day 30 – PLANK FOR AS LONG AS POSSIBLE!!

Benefits of Plank Exercise:
*It strengthens your lower back
*It develops your core muscles – which include the abs, back, hips and the butt.
*It helps you to avoid injuries and encourages good posture.
*It can be done anywhere.
*It develops your abdominals by targeting the rectus abdominis.


And if you need a little more encouragement, here's another planking demonstration from our resident exercise guru. Look at that form! Her four-year-old abs are strengthening by the second!

Let me know if you're on board...no pun intended! 

Wednesday, November 5, 2014

Solving my lupus sleeping dilemma the only way I know how: via a spreadsheet!

It's time to break out the chronic control spreadsheet. (Silent squeal of joy!)

As many of you know, I find great value (and solace) in tracking various aspects of my disease from time to time. It gives me clarity, a sense of ownership, and a little something to focus on while and/or if my disease is running amok. And while I'm happy to say that nothing in my life is running amok right now (did I just jinx myself???), I'm trying to figure out if there's a reason that I'm having a tough time falling asleep at night. I have a hunch that I may be doing something that's causing the difficulty, and the only way I know how to snuff it out is to turn to my spreadsheet. Thus, I'm sharpening my pencil and clearing space on my bedside table. The charting is about to begin. (Beware, lupus. Those are fightin' words!)

Here's the situation:

Every few days, or what seems like every few days, I have a hard time going to sleep at night. Mind you, this has been happening long before Day Light Savings took place, so please, mark that off your list, if you're playing along.

When I think of the short list of possible culprits, I think of my stress level, my screen-time right before bed, the subject of my screen-time (i.e. Pinterest, you know who you are), and the food I'm eating after 6pm. I'm also not ruling out hormones, or random illness (cold coming on, etc.) As well, I'm curious to see if the difficulty has anything to do with my afternoon nap. Am I getting too much sleep? Is it too late in the day? Is Cellcept making it so that I don't need as much sleep each afternoon?

(Cue another silent squeal.)

For the most part, my daily afternoon nap has become an expected part of my every day life. Ever since 2004, I've taken a 2-hour nap in the afternoon, save a handful of aberrations. The time of my nap varies slightly, as does the length and quality, but without a doubt, I sleep every day. Some days, I wish it weren't the case. In fact, I have a post coming up in the next few days about this very subject. But usually, I manage to painlessly work around my nap, with the dedicated help of my family (Johnny, et al, you know who you are).  I also try to get 8-10 hours of sleep at night, totaling 10-12 hours of sleep per day. But I'm starting to wonder if, for whatever reason, my 2-hour siesta is beginning to impede my nighttime sleep. So instead of just wondering, I'm going to start tracking. I'm going to focus on my nap first, along with my nightly routine.

I've picked 5 categories to track regarding the nap/night sleep connection: quality of nap, time I take my nap, and length of nap; and then difficulty falling asleep at night, screen-time, and stress-level before bed. (When I refer to stress, I specifically mean stress over a to-do list. When I have a lot to do, and it's written down...I do fine. It's when I decide to start crafting virtual to-do lists in my head that I can't shut it off. )

And if I glean nothing from this first round of tracking, I'll broaden it to include food, exercise, etc. But those factors seem to be holding pretty steady, and I don't want to get too mired down with data. So it's nap and night factors first. I'll be sure to keep you posted in a few weeks after I've logged enough days. Probably be the most fun I've had yet!