Tune in this morning (Friday, 7/27) at 10:15am, as I revisit my pal Mark Houck over at Holy Spirit Radio. I'll give an update on my book, my pillbags, and whatever else Mark feels like discussing, as it relates to Despite Lupus. To listen, simply log onto www.holyspiritradio.org a little after 10am, and click the "Listen Live" button in the top right corner of the page.
Have questions or comments? Feel free to call in during the show at215-345-1570 . I look forward to hearing from you.
And to listen to my last visit to the show in March of 2010, click here.
According to the infographic, 63% of lupus patients
polled say they decided to retire or quit work earlier than they had planned. And the
findings of the survey showed that 64% of women with lupus who participated in
the survey said they had fewer children then they had originally planned.
Okay, so these are major decisions we’re talking about – life-altering kind of
stuff that requires a complete change of plans and a big dose of acceptance.
And it’s these kind of big lifestyle changes that I had no idea might be required
when I was diagnosed with lupus. I didn’t understand that with a diagnosis like
lupus, life as I’d known it was going to be different. I didn’t get that my
lifelong plans were going to be altered, and that my goals, long and short
term, might shift. I didn’t know I was going to have to do things differently,
or that lupus was going to affect everything from the way I got dressed in the
morning, to the cars I drove, to the way in which I interacted with people. “Life
upheaval” wasn’t in any of the lupus literature I read, and so I didn’t even
think to add it to the list.
I promise you – I wasn’t in denial, those issues just
weren’t even on my radar. What did I think
would be in store? Definitely a couple of prescriptions. Maybe a few dietary
restrictions. But as for an overhaul of
the way I lived and breathed? No way.
Of course, now, I’ve fully embraced my new way of doing
things, and I think my contentedness stems from a combination of time, experience, as well as expectation.
Now that my expectations are set to include big and little changes, lifelong goal alterations and daily routine accommodations, it makes it much easier for me to "live normally", because I understand that my "norm" is now a "new norm".
And although I hate to be a resounding gong, that's why I wrote my book, and why I keep this blog. So that others who are diagnosed with lupus aren't blindsided down the road like I was. Ideally, you embrace the disease early on, and set your expectations for a new norm (not necessarily worse, just different), and then you begin to shape and rebuild your life around lupus, living well, despite it.
I've said for years that it takes courage to live with lupus. It takes courage to wake up each morning and put one painful foot in front of the other. It takes courage to stare those medications in the face each day, to put on a happy face at work, and to crawl into bed each night, knowing tomorrow might bring something even more painful than it did today.
And yet, this realization didn't come from my own experience with lupus. Rather, it came from the thousands of interactions I've had with lupus patients from around the world. Only through theirpersonal stories of determination and triumph did I come to realize just how much courage it takes to deal with a chronic illness.
In the past week alone, I heard from three friends who shared with me snippets of their challenges with their own chronic illnesses. It is these stories that inspired this post:
*One of my girlfriends just opted to start using a wheelchair to facilitate her ability to get out and about, after years of struggling with declining energy levels, fatigue, and overall weakness due to her chronic illness. In one fellow swoop, I say she's taken one giant, positive, productive step toward making herself mobile again. Have that, you nasty, debilitating chronic illness!
*Another girlfriend, overwhelmed by fatigue, headaches, chest pain, and a handful of other paralyzing symptoms while traveling, canceled her flight home at the last minute, knowing she was incapable of making the trip on her own with her baby in tow. Instead, she asked for help - reaching out to her husband to drive her and their son the four-hour trip home, knowing her husband would have to turn right around and drive back for work commitments. She knew she couldn't do it any other way...and the courage it takes to make such an assessment is huge. What an example of knowing your limits (even when you didn't know you had any!), and making a good, solid decision.
*Another girlfriend, after being prescribed more than a dozen medications, marched into her doctor's office, asserted herself as never before, and said something like, "I'm no longer comfortable being on all of the medications you've prescribed. What can we do about it?" Oh, yeah - taking charge and feeling better. That's how it gets done. If we don't speak up when we feel something's out of line, who will?
Of course, I'm sure none of my friends see the monumental courage it took to make the choices they did, and yet these are perfect illustrations of the kind of courage, strength, and self-awareness one must possess in order to carry on, despite an illness.
And as these examples demonstrate, it can be the choices that are put before us on an every day basis that require the most courage. Daily excursions, caring for our children, and daily pill administration - these are issues we deal with day in and day out. And when the day comes when we say "enough is enough", that is a courageous day indeed.
Let these ladies' stories be inspiration to you as they have been to me, prompting us to muster up the courage to make our own positive changes, despite our illness.
A few weeks ago, I made a phone call to my manufacturer. It was a little before 5:00pm, and I was hoping to get a confirmation that my bags were being shipped out that day. Much to my dismay, my account representative had left for the day, but I figured I could get the information I needed from the shipping department. I called the main line of the office, and asked the receptionist to connect me to "Robert, in shipping." And you know what she said? "Robert doesn't take calls after 4pm." And I said, "What? He doesn't?". She said, "No, he doesn't. That allows him to focus on getting the shipments out for the day."
Wow. I guess Monsieur Robert has set some boundaries for himself, now, hasn't he? And as a boundary-setter myself, I respect that fact. What's more, I appreciate that the company supports him in doing so.
So this got me to thinking - if Robert sets limits for himself, and upholds them, why shouldn't I? Normally, I would never answer the phone during my 2-4pm nap time. But when I'm in the midst of time-sensitive pillbag manufacturing, supply sourcing, and marketing runs, if the phone rings, I answer it. I convince myself that those calls can't wait. But you know what? They can. And it's precisely those times that the phone calls should wait, because that's when I need my sleep the most!
I'm not really missing out on anything anyway. When I answer the phone between 2-4pm, I'm tired. I'm dazed and confused, and I'm in no shape to conduct business.
So sorry, guys: Robert and I have spoken. We won't be taking any calls during our designated "no call" zones. No exceptions.
Now I just have to train Darwin as my gate-keeper receptionist!
I recently uncovered one of the cutest shops in Del Ray (Alexandria, VA), while simultaneously securing my latest Pillbag retailer. What a thrill!
I'm pleased to announce that the Pillbags are now available at Kiskadee, a specialty boutique featuring woman's apparel and accessories, gifts, jewelry, home and garden, along with items for baby, men and boys, all sprinkled between two levels of great shopping right along Mount Vernon Avenue. I went in to drop off the store's first order of bags, and came out with a Kiskadee bag of my own...filled with great finds.
If you find yourself in Del Ray, feel free to stop in and say hello to co-owners Darby and Neil. Tell them the Pillbag Lady sent you!
Check out this great interactive infographic, created by Human Genome Sciences (HGS) and GlaxoSmithKline (GSK), makers of Benlysta. The two companies have funded and developed a survey conducted by GfK Roper North America to evaluate the daily and long-term impact of lupus on health, family relationships, career and quality of life, and identify potential gaps in communication. The one I've posted below deals primarily with work-related issues. Simply click on the blinking circle in the top right corner of each image, and an oh-so-telling percentage will be revealed. Just another reminder that we're not alone!
HGS and GSK published an infographic about the lupus patient experience, too, which you can view here.
I need to take a moment and say "thank you". Thank you to my afternoon babysitters, without whom I would be a major lupus basket case. Deirdre and I are still in major nap negotiations, particularly after a week on vacation, and if I didn't have the assurances that someone was going to show up everyday at my door at 3pm, I'm not sure how I'd fare. Actually, I know how I'd fare - and it wouldn't be well.
Just recently, in fact, I've taken my babysitting services to a whole new level. Up to this point, I was the one handling the after-3pm negotiations with a less-than-considerate 3 1/2 year, figuring that I should still be the one to enforce the quiet time. But I just realized that if I need my sleep, I needed to offload the responsibility to someone who can just as easily enforce "quiet time" as I can.
Of course, Deirdre still knows it's Mommy who's insisting that she rest quietly, but for the last few days, if 3pm comes and she's still not cooperating, I go "off duty" and the babysitter picks up where I left off...which is that Deirdre needs to put in her quiet time before she can get up. And it's working. Pretty much.
My reluctance in handing over the reins was three fold. I thought it would be: a) too hard for someone to understand the nuances of the negotiation strategy; b) easier to do it myself, and c) too frustrating to overhear the failed negotiations, particularly when Bernie's nap was in jeopardy if things went south. But as is often the case, I was overthinking the whole thing. My sitters are smart young ladies, and there's no rocket science involved in gently coercing Deirdre to do what we need her to do. I just had to explain it one time, and now the sitters are off and running.
I've repeatedly made this mistake in the past, not only in child-rearing, but in all things lupus. I convince myself that I'm the only one who can do "x" - at least, do it in the manner in which I want it done. But most of the time, we're not the only solution. Husbands can grocery shop; teenagers can vacuum; my girls can pick up their toys. Sure, in my case, the groceries Johnny comes home with might not be the exact ones on my list, and the toys might not be in the exact places I want them to be, but life goes on. As I said in a post a few years back, at least they're the ones doing "x", and not me!
I’m back from our week at the beach! I meant to put up an
“Out to Lunch” post the Friday before we left, but I guess I was just too anxious to start my vacation. We
had a wonderful time with the Gorman family – and thoroughly enjoyed the sun
and surf. It was a hot one, but the beach was cool and breezy. My in-laws have
always embraced my photosensitivity, and each year, they seem to come up with a
bigger and better solution for providing shade at the beach. We’ve now
graduated to a big, blue tent – providing relief from the sun for the whole family. You can
fit nearly 10 chairs underneath that tent if you had to – but you'll almost always find mine right in the center!
As I’ve mentioned before – I’m not as photosensitive as I
used to be (thank goodness!), so I spent plenty of time in the ocean with the
girls. This is the first summer at the beach that I’ve had Raynaud’s, and I can
assure you, it was in full force. After about 10 minutes in deep water, my
fingers were as white and numb as can be.
Of course, with such high air temperatures, they thawed quickly once I
was out of the water for a few minutes, but it’s still a crazy phenomenon. Needless to say, Bernie seems to prefer the sand, so I manned the shore
most of the time while Johnny took the plunge with Deirdre.
And naps were long and plentiful while we were there – so I’m no
worse for wear upon my return. A successful vacation for sure!
Of course, I took my handy-dandy pillfold along for the trip
if you were wondering!), and I decided to take a picture of it mid week to
demonstrate what I’ll call a Pillbag Pro
Tip – tips on how to maximize Pillbag usage and minimize stress and exertion on your
joints. Here’s what my bag looked like
by Wednesday mid-day:
If you notice – the zipper for Wednesday is left halfway
open. When I’d open the pouch to get out my morning pills, I just left the
zipper in the middle with the pouch open. That way, when I went to take my
evening pills, I just had to unzip the pouch the rest of the way to expose my
evening pills. What’s more, once I took my evening pills, I left the zipper to
the far right (with empty pouches open), so that it’s ready for me to fill the
following week. As you can see, the zippers from the Sunday, Monday, and
Tuesday pouches are also pulled to the right. See how the pouches are left
open? Instant time saver and joint reliever!