Friday, August 30, 2013

The Pillfold Winchester gets a new glamour shot!

We conducted a mini-photo shoot this week, and the Pillfold Winchester updated her look! Here's a shot of the new product shots - lots of pink in this shipment of the Winchester. It looks so good on my nightstand!

And now that I'm back in a two-story house (as opposed to the smaller rental house where I could practically grab a water out of the kitchen refrigerator from my bed), my Pillfold is on the move daily. I tend to take my morning pills with breakfast, so now I'm carrying my Pillfold downstairs in the morning, and carrying it back upstairs in the evening. I'm so glad I'm not lugging around a clunky, plastic pillbox, risking that it would spill going down the stairs in the morning (because I'm inevitably carrying way too many things down at the start of the day), and that it's not cluttering up my new kitchen counters. No place for ugly plastic in this swanky new place!

Be sure to order YOUR brand new, very pink Winchester today.

Wednesday, August 28, 2013

The Split-Second Lupus Decision - ask for help, and your body will thank you for it.

So on the heels of writing about my rookie mistake with my nap on moving day, it's only appropriate that I celebrate a winning decision that I made last week. It happened among a series of not so good choices, but we have to focus on the good ones in order to build momentum and keep the healthy ones coming, right?

Last week was a big one for me. Johnny and I were in New York on Sunday, Monday and Tuesday for the gift show. We had house stuff to catch up with on Wednesday, and on Thursday, I had a ton of running around to do for the Pillbags and the house. On Friday, we had family coming in town for the weekend. The week started out well in NYC - I felt great, took super hard naps (meaning I slept really well), and we relaxed and took it easy. Then, the slow decline began: 

We got a late start out of the city on Tuesday morning, so I ended up napping in the car instead of in a bed. Mistake numero uno. 

We arrived home, and I felt good (because I had napped, although probably not long enough), so I hit the ground running. We went out to dinner, I stayed up late doing work, and I even threw in some laundry. Mistakes two, three and four. 

Wednesday was relatively-error free, although I don't think I went to bed before 11pm. Mistake number five. 

Thursday was just a ridiculous showing on my part - I dropped the girls off at my sister's in the morning, and then proceeded to run every errand I could in a four hour period of time. Instead of taking into account I'd woken up with a hint of joint pain that morning, I did what I should never do, and crammed as much in as possible while I was feeling good and the pain was manageable. I was almost an hour late for my nap, and I hadn't stopped for lunch. Bad, bad, and bad! 

Now, before you think I've slipped off the wagon completely - let me redeem myself. On my way home to pick up the girls and take a nap, I made a split-second decision to call the cleaning people we use and ask if they'd clean the house the following day. I'd always planned to do it myself before our guests arrived, but once the joint pain came on, and I realized I'd done too much, I tried to fix my mistakes. And fast. 

I woke up Friday with more joint pain, but WITHOUT a house to clean. The cleaners were in and out in a couple of hours, and I took it VERY easy the remainder of the day. I leisurely baked a few things for our house guests (I LOVE doing that and it's relaxing for me), got in a good nap, and even took a second cat nap before our guests arrived. Saturday, I woke up with the same joint pain, took it easy again, and by Sunday morning, I was feeling much better. No joint pain at all, and it was an on-time bedtime for me Sunday. 

So that was my split-second decision, made in the car, as I came to the realization that I'd just run myself ragged and I needed to right my wrong. I'll still have to watch it this week, but I plan to do just that. My babysitter is in full-gear, and I plan to be as errand-free as possible.  

And just like I learned from Monday's post: Hear that, Johnny? I said I'll be errand-free. Hold me to it, okay? 

Monday, August 26, 2013

Moving Day!! Lupus lesson #351: Share your plan to ask for help so you can't talk yourself out of it when the time comes!

I just realized I never published this post on the day we moved! I'm happy to say that we're settling in and pretty much box-free, after three and 1/2 weeks in the new house. While it's been challenging to control my instincts to just go-go-go, I'm learning not to push. I had a bit of joint pain this past week, but I'll tell you more about that later this week.

First, here were three things I considered on the actual day we moved:

1) Get help:  Done and done. We had a babysitter help us out in the morning, and then my in-laws arrived mid-day. Check!

2) Secure quiet place to nap:  I could have merely hoped that the moving festivities would conclude by 3pm, or I could find another place for Bernie and myself to nap. My sister gladly offered a room at her house while they were out of Bernadette and I headed over for an afternoon siesta. I made a rookie mistake, however, and didn't take anyone along with me in case she didn't nap. I had every intention of asking one of my in-laws to grab a book and come with me to listen for Bernie. But when the time came for us to go nap, it just didn't...seem...necessary. I was feeling good, Bernie seemed tired, I didn't want to inconvenience anyone (they were already offering to go clean up at the rental house), and bottom line, I got too cocky. I got a whiff of "I can do this all by myself", and decided to just run with it.

How could I have eliminated the temptation? By cluing in Johnny and my in-laws to my original plan. If I'd just mentioned earlier in the week, or even earlier that day, "Hey, when Bernie and I go nap, I'd like someone to come with me in case she doesn't fall asleep", there's no WAY they would have let me go by myself. The plan would have been established, I couldn't have weaseled my way out of it, and I would have gotten a nap. In the end, I fared okay. But it just goes to show that you really have to set yourself up to succeed, if you plan to do so!

3) Unschedule myself for the few days following the move: I made sure we were pretty free and clear for almost five days after the move.  Deirdre had a swimming lesson two days after the move, but I figured that would get us out of the house and away from the boxes. I thought it would be a welcomed break, and it was!

Here are two quick pics I took the last night we were in our rental house. Here's what I'd been staring at for the last nine months, and below that is a shot of what I had to look forward to in my new bathroom. I've officially been upgraded!

Friday, August 23, 2013

Rock, Paper, Cocktails 2013 - Mark your calendars for Monday, 9/30 at 6:30pm!

I hope you can join me at the end of September in Old Town for this great charity event. The pillbags will be on display - pick one up for yourself, another for a friend, and donate to a great cause!  

Wednesday, August 21, 2013

Lupus decisions - good tips continued

Decisions. I counted 27 of them in the master bathroom the other day. Twenty-seven decisions in that little space that we made in order for the room to turn out the way it did. Everything from choosing the type of mirror, sink and faucet, to the grout color, position of the towel ring, and kind of door stop we wanted. Not to mention the three different tile materials, and the color of the walls. Our architect made a slew of decisions even before we got to this finish stage, but thankfully, he didn’t ask our input on those. I love when he makes a show of his independence.

Clearly, a few of those bathroom decisions were weightier than others -  choices that set the tone for the entire bathroom - while others merely provided a finishing touch that wasn't essential, but made for a nice addition. In fact, there were some decisions that I never imagined I would even have to consider, the color of the grout being one of them. I remember thinking every moment I spent deliberating over the grout was one moment too long. It seemed so unimportant to me, but I was still responsible for making the choice, and I wanted to make the right one. After about 30 minutes of spinning my wheels, I called up our contact at the tile store, and kindly asked her to spin her wheels for me. She effortlessly called out the grout colors based upon the tile we'd chosen, and the look and feel of the rooms as I'd described them, and we were finished within 20 minutes. It was the best pass off of decision-making I made during the entire project. (I think my architect and contractor recommended I consult our tile lady in the first kudos to them for steering me in the right direction.)
Of course, now that I step back and look at the bathroom as a whole, many of those decisions (including the grout) seem awfully insignificant compared to how important they felt when we were in the midst of the decision-making process. I'm thankful that we took as much care as we did, but I'm glad we didn't lose any more sleep over the ones we did make.
I find my decisions with lupus have followed a similar pattern. Some decisions carry a lot of weight, like my decision to start a medication, get pregnant, or ask for a work accommodation. The results of those kinds of decisions set the tone for my life with lupus as a whole, so it's important that I considered those wisely. Other decisions, particularly those I make on a daily basis, might not be quite as important. But I often allow those little ones to take up just as much time as the big ones. Just the other night, I grew frustrated over the fact that I had to decide how to spend the last hour before I went to bed. Do I pick up the house for my friends who were coming the next day? Do I write a blog post? Do I search online for a new rug for Bee's room? What do I choose, and why do I have to pick only one in the first place? Can't I just stay up for three extra hours and get it all done?
And so this is where it's important for me to remember the grout example. Decisions like these are not earth-shattering. In two days or even two hours time, my life will be relatively unaffected by whatever I choose. I just need to step back, and take a moment to decide what's most important, what can wait, and what, if anything, can be passed off to someone else. (Does my tile lady blog, for instance?) 
But even before all that, perhaps instead of deliberating so, I should rejoice in the fact that I don't have any weighty decisions to consider at the moment!

Once again, here are three more helpful hints from the list my architect sent me, all of which hit home for me:

*Choose when to choose - prioritize:

Just as I mentioned above, the import of the decisions we have to make with lupus vary. Just make sure you spend time on the ones that matter most, and are going to have a lasting impression. Let the other ones fall by the wayside. Let's learn to save our energy for the biggies!

* Be grateful for the good choices:

This has been instrumental in helping me make good, efficient decisions. Now that we're back in our house, with each day comes a new opportunity to push my limits or overdo. Maybe it's unpacking one too many boxes in a row, or pushing my nap off because I'm in the midst of searching for a new shower curtain online. Whatever the reason, I'm able to see the results of my good (or not so good) decision making almost immediately. When I choose well, I feel the positive physical effects the following day, which makes me thankful for the wisdom I used in the first place. And that only makes me want to make more good decisions moving forward!  
* Don't worry about comparisons to others and what others may think

Is this the crux of lupus decision making, or what? With a chronic illness, there are decisions we're going to make that others might not understand, agree with, or support. When we don't look sick, it doesn't make sense why we have to take it easy, stop to nap, or forgo an evening out. But we have to have faith in ourselves that no matter what other people may think, we need to make the decisions that are right for us. And it's in our best interests not to consider what someone else may be capable of. What's important is that we figure out what we're personally capable of, and that we do everything we can to work within the confines of those limitations so that we can continue to live well, despite our illness.

Just like the color of my grout, some of the decisions I've made with lupus were choices I never thought I'd have make…ever. But now that I’m here, I’m going to do my best to make good, solid decisions, without spending too much energy doing it. Twenty-seven decisions and counting!

Tuesday, August 20, 2013

The Paradox of Choice -- A good read, or so says my architect!

In yesterday's post, I made mention of the book on decision-making that my architect recommended. After confirming the title, I wanted to share:  "The Paradox of Choice: Why More is Less" by Barry Schwartz.

Look for more on the choices we make (and have to make) with lupus tomorrow!

Monday, August 19, 2013

The Decision-Making process: A few helpful hints

I feel like Johnny and I have been in a permanent state of decision-making for the past two years. That’s about the time we started the process of renovating our house. I thought working with our architect during the design phase would require the lion's share of the decisions, but oh, how wrong I was. Now that the job is 99.9% complete. I can assure you that during the past seven months of construction, at least one decision a day was required of us. And with more choices made than I like to recall during the final finishing stage, I’m so relieved that short phase of my life is over!

Some of these decisions came easily, while others, ahem, did not. At one point during our deliberations over the exterior house colors, I sent an email to our beloved architect, asking him for his opinion on the color combination. He immediately responded with some pat answer about it being our personal decision, and that we had to make the choice and own it, yada, yada, yada. I wrote back, taking him to task for responding so generically, and then he responded in the way I was hoping for…with a little touch of Dr. Phil included. (Truth is, I’ve never seen or heard Dr. Phil, but I probably should…he might really like a Pillbag!)

What our architect included in his response was a list of key points to consider when making decisions. The advice, taken from the book he received from another client, was particularly helpful for the remainder of the renovation, as well as in my daily life with lupus. I found the advice essential, not only during the decision-making process, but particularly in the moments, days, and weeks after the choices had been made. With the renovation, it was imperative that our decisions build on one another in order to continue making progress. Once the choice had been made, we had to stick by it, and allow the pieces (of the house) to literally fall into place. Going back on our decision or regretting it would have cost us time, energy, or money, none of which we wanted to waste.

Same is true with lupus, right? Whether it’s deciding on a new medication, a different doctor, or an alternate way of managing the disease, the last thing we want to do is waste time, energy, or money. We want the choices we make to be good ones, so that we can continue re-building our life, with lupus in tow.

Here are a couple of points from that list. Look for another couple in an upcoming post. Yes, they’re that good to warrant separate blog entries!

Keys to Resolving Choice

*Be satisfied with good choices, instead of striving for perfection:

This one is SO relevant for me. I can be such a perfectionist, to the point where I don’t make a decision because I don’t want to make the wrong one. But I’ve found there are very few decisions that are absolutely right…it’s just the choice that’s right at the time you make it. Kind of takes the pressure off, don’t you think? I remember making the decision to start Cellcept. I was so worried that it wasn’t the right time or the right circumstances to start the drug. I was waiting for the perfect scenario, but eventually realized there was no perfect scenario. I just had to make the decision that was right for me at that point and time. And I’m so glad I did. It literally changed my life! (You can read about all that here.)

*Don't focus too much on the choices you've already eliminated:

Oh, how true this is. When I decided to go part-time at work years ago, I struggled with the decision immediately afterward. Would we be able to manage financially? Would I feel under-utilized? Would it be the end of my career? As I contemplated these things, I kept thinking that going back to work full-time would instantly eliminate these concerns. But I was forgetting the reason I left full-time work – because my health suffered because of it. Once I fully accepted this fact, I was able to positively embrace my decision to work part-time – re-shaping my understanding of the life/work balance, and re-establishing my identity, given my new circumstances.


So how did this advice play out in our house colors? Once we settled on a nice green color for the siding and brick, with a darker green for the trim, and a tan for the second story trim, we were able to move forward with other key decisions, like stain color for the front door and the color/finish for the gutters. We really did build on our previous decisions, and it helped tremendously to trust our decisions, rather than striving for intangible perfection or being plagued with regret.

Just like in my renovation, I’ve tried to build momentum with the decisions I’ve made since being diagnosed with lupus, allowing one day’s decisions to roll into the next.

Today, I challenge you to make at least one good decision - one voluntary choice that helps keep your disease activity at a minimum. We’ll hope to keep the momentum going, in order to make another one tomorrow!

Wednesday, August 14, 2013

Do my kids understand lupus? I'll go with "Enough for now."

The word "lupus" comes up in our household a lot. I talk about it, blog about it, speak about it, and write about it. So it's fair to say that my girls are pretty familiar with the concept.  The wonderful  Fairy and the Wolf  book has helped, too. It always finds its way to a special spot on the bookshelf for easy retrieval.

But you can never be sure if the two little ladies ruling this roost really get it...although this past week, it was confirmed that they at least know enough.

Tale #1: Last week, after I put Bernie down for a nap, I was running around, trying to unpack just one last box before heading upstairs to nap myself. Deirdre looked at me, looked at the box, and said, "Mom, don't you think it's time for your nap? If you don't rest, your lupus is going to get really bad." 

Yes, Deirdre, you're right. One point, daughter.

Tale #2: A few days ago, I overheard Deirdre and Bernadette playing princesses. Clearly, Dee was in charge, and she was doling out tasks to Bernie. She said, "Guard, your only job is to make sure that the queen takes a nap."

Oh my. Am I in trouble or what?

Tale #3: It was cloudy a few days ago, so the girls and I headed outside to do some much needed gardening (clouds = shade for me, and cool temps for the gals.) We all put on our gardening gloves, doled out the spades, and went to work. I'd planned to pull weeds in at least one section of our "garden" (a loose definition, mind you), which should have taken about 30-45 minutes. Granted, that's about twice as long as my arthritic-prone hands can take, but a task is a task.

After about 15 minutes, Deirdre declares she has to go to the bathroom. She runs inside, and Bernie casually follows in after her. I, of course, have no intention of stopping, since we were only halfway finished. But when I hear Bernie rustling around in the mudroom after a few moments, I peek my head inside. There she is, gloves off, shoes and socks removed, heading to the sink to wash her hands. I ask her what she's doing, and she declares that we're finished gardening. I say, "Oh, Bernie...we still have a lot of weeds to pull." And she says, "No, Momma. We're finished with weeds. It's time to come inside."

Now, I know she wasn't personally monitoring me or my joints...but whatever timetable she was keeping, it was better than mine. I, of course, followed her lead, packed up my spade, and went inside. My joints thanked me for the days that followed.

So while the boxes aren't unpacked, and the garden isn't weeded, I can rest easy, knowing my girls have the lupus basics all wrapped up.

Monday, August 12, 2013

Lupus isn't a one size fits all

I think we all know this by now - lupus affects every person differently. The manifestations of your lupus will most likely vary from mine, and the degree and type of symptoms you experience on a daily basis might not resemble what I encounter at all. This is why it's so difficult to understand and diagnose the illness - because it looks different on everyone!

Because the disease varies so, the treatment and lifestyle alterations that work to combat the symptoms for one patient might not work for another. Of course, there are general therapies that tend to work, since symptoms like joint pain, fatigue, hair loss, and rashes are so common in lupus. But even those may range in severity, such that the result differs from person to person. In fact, I've discovered that even though something is a sure-fire solution for me, it might not work for someone else. That's why it's so important to track your own disease activity in a way that can help pinpoint what's working and what's not - be it medication, lifestyle factors, or environment. Self-awareness is the key to making sure you take the necessary steps toward staying well. Here's what I mean:

Nap: I went to visit a girlfriend of mine a few months back, who also has lupus. I made sure I worked in a nap the afternoon I was there, and since I was napping, she decided to give it a try herself. I slept for a whopping 2 3/4 hours, and she...didn't really nap. It just wasn't working for her. She was uncomfortable, couldn't sleep, and aggravated her back in the process of trying to rest. Clearly, taking time in the middle of the day to sleep isn't a good option for her. She knows her body best, and I'm sure she'll settle on another way to relax and recharge mid-day. Perhaps meditation, reading, or even yoga might fit the bill.

Vacation: Another girlfriend of mine was in the midst of a flare about a year ago. She had a week's vacation coming up with her extended family at the beach, and was debating about whether to attend or not. We spoke shortly before her trip, and I told her that for me, a trip to the beach - in the heat and sun, away from routine, without the help of a babysitter, and with family obligations to consider - would have been the perfect catalyst for disease activity  If it had been me, no way would I have gone. But, her instinct told her to go, and so she did. She told me later it was the best she'd felt all summer. Her husband was there to help with her kids, she had the distraction of new surroundings, and she wasn't stuck at home, thinking about how crummy she felt. I'm so glad she didn't heed my advice!

Working: A devoted reader recently wrote in about her approach to working full-time. She said she felt she could have written several chapters of my story was her story to a "T"! She even chose to stop working at one point, also in an effort to curtail disease activity. The only difference was that once she left her full-time job, she saw less improvement in her emotional and physical wellness, not more. She wasn't as busy, so she felt she had more time to stew about lupus - the medications, the doctors, and the symptoms. She also really missed being surrounded by people, and felt isolated at home all day. Realizing she needed to tweak the changes she made to her lifestyle, she started looking for a low-stress, part-time job close to home. She found one, and within a few days, she noticed a real improvement.

There you go - different strokes for different folks. It can take some trial and error to figure out what helps and what hinders your disease activity. But if you listen to your body, and work on recognizing how you're feeling and why, you should be able to make decisions that are good for the health of the one who matters most -- YOU!

Friday, August 9, 2013

Another Pillbag Shout-out!

Many thanks goes out to Rhiann in the UK for her wonderful Pillbag review on her blog "My Brain Lesion and Me: Once Upon a Dizzy Spell...A Story of a girl living with a neurological condition."

Rhiann is a devoted (read: repeat!) Pillbag customer, and I'm thankful for her business and her review. Here's a quick clip, and you can read the rest of her post here

...There is my very handy ‘pillfold’, which is a fun and fashionable way to carry medications and vitamins when you are on the go.  Instead of those annoying pill boxes, which for me when I am having tremors in the hands are very difficult to open.  But the pillfold is completely different – they are made from fabric  and have eight separate compartments; one for each day of the week with morning and evening compartments, which in turn makes it easy to determine which pills need to be taken and when.  And with the easy to grab zip pulls they are extremely easy to open and close.  As the name suggests they also fold so it’s very discreet and no one needs to know you have medications on you as it’s so discrete.  This is great to carry when out because it’s discrete and means I never have to forget to bring along my medications again!  I love mine so much and find it’s incredibly handy, one of my most useful purchases!

Wednesday, August 7, 2013

Another Friday Affair at Hollin Hall coming up!

I'm headed back to Hollin Hall Market this Friday, with a full stock 
of Pillbags in tow. Hope to see you there!
WHEN: Friday, August 9th, 12-4pm
WHERE: Hollin Hall Mansion, 1909 Windmill Lane, Alexandria

Letting go of the clutter, but holding on to memories of lupus hairstyles past

Now that we're back in our house after nine months in a rental, I've been reunited with the stuff we kept in a storage container in our driveway during the renovation. I can't believe how much we had, and how much of it we don't need anymore! I intentionally didn't do a lot of purging before we moved - a) because I didn't know what we would need once we moved back into a new and renovated space, and b) because I wanted the time away to dictate what stuff we could get rid of. Now, almost a year later, it's abundantly clear what we can live without. And it's a lot! Since our house is fresh and new, I'm able to objectively see that some of the old stuff I was holding onto doesn't have a place in our house. Let the purging begin!

The best part has been tossing stuff into the donation pile as I unpack. I'd say every third or fourth box has been donated. I'm going through every single thing, but I'm glad I had the forethought to pack many of the items I thought might be obsolete together. Thus, choosing stuff for the donation pile has been more about keeping the momentum going, rather than feeling torn or sentimental about things we really don't use, need, or want anymore.

I did find one thing that I was very sentimental about - and that's a hair magazine I've been holding onto since 2005. I actually remember packing it up nine months ago, and I had every intention of keeping it then, just as I do now. Here's the cover - and here's why I'm keeping it:

Almost 10 years ago, I had a bout of hair loss that completely wiped out my thick head of dark, lovely hair. I had only strands left to wrap around my head...and it was a pretty dire situation. You can read about the whole ordeal here, and see pictures of what I looked like (and felt like) after I cut off those strands. Once I mustered up the courage to cut off my hair, I must have looked through this magazine 20,000 times over the course of about a year. Each time I flipped through its pages, I grew increasingly comfortable with my short new 'do, and quickly learned to enjoy the benefits of short hair ( e.g. going in for a "trim", and coming out with a whole new look...simply because you can!) Of course, along with my "look", I was coming to terms with my illness and the idea of embracing the disease, rather than wasting so much time and energy fighting against it. The moment (and I mean, the moment) my hairdresser cut off those strands, I felt like a whole new person. It was one of the best things I've every done.

So when I flip through this magazine, with its tattered pages and folded-down corners, I literally tear up. It was such a cathartic time for me, physically and emotionally, and it really was the beginning of a whole new era. As I pored over those pictures, I learned how to celebrate the fact that I had reinvented myself in the face of lupus - gaining wisdom, self-awareness, and inner strength with every page I turned.

So while this magazine gets to stay, many other things in our household don't, and I'm thrilled about it. This, too, is the mark of a whole new phase of our life, and I'm happy to be starting it uncluttered!

Monday, August 5, 2013

Choosing Sleep: Rewarding in so many ways.

So the decision for yesterday was this: do I take the last 30 minutes of my 2 hour dedicated "nap time" to write a blog post, or do I sleep? From the short amount of text on your screen, you can see that I chose the latter. I just couldn't bring myself to short-change my rest time, even though I did wake up after about an hour and 15 minutes. I just wasn't ready to pop out of bed...and so I didn't. Later that evening, when I was full of energy, it was obvious that I'd chosen wisely!

I'll be back on Wednesday, with a full-length post about the roller coaster that is (or actually was!) our renovation. Looking forward to chatting then!