Monday, December 31, 2012

2013 Lupus Resolution: Purposeful Pacing

Wow. It's been awhile.

I think I do this every Christmas season. I decide to take a few days off from blogging due to the craziness of the season...and then I take a few more days...and then a few more days...and before I know it, the New Year is here, and I've had myself an unannounced blogger's vacation. Oops!

Thanks to all of you for your check-in emails to make sure that I'm still here. I AM here, and doing well - probably because I chose to take time off from blogging, rather than squeezing every last bit of time and energy I had, trying to fit in a post every few days! I don't think "overwhelmed" is the right word to describe the past few weeks, and "swamped" and "inundated" are a little strong.  But just like everyone else, I was definitely "busy"...with the girls, with Christmas, with the Pillbags, and with my I just had to pick and choose what I could fit in, and still keep my health on track. Thus, blogging had to take a back seat.

I should probably pat myself on the back - since I actually made a wise decision to pare down and not overload myself. I hope you can say the same! Even if that wasn't the case for this holiday season, let's make 2013 the year to allow ourselves, without a stitch of guilt, to take things nice and slow. You can imagine how anxious I am to grow the Pillbag business, expand the reaches of my book, all the while making sure my renovation stays on course, the girls get the love and attention they deserve, and my lupus stays in check. But I'm not going to be able to achieve those first few goals, without making sure that last one is at the forefront of my mind. Pacing myself is the hardest thing I do every day...but it's the thing that makes my life the easiest.

So here's to pacing ourselves for the coming year. I'll be sure to fill you in every step of the way, telling you about my choices (wise or other!),  and I'll look forward to hearing from about your purposeful pacing endeavors. I hope they're good ones!

Wednesday, December 12, 2012

Despite Lupus Webinar Registration: Don't miss out!!

You can now register for my Living Well, Despite Lupus: Listen Up, Doc! webinar, sponsored by the S.L.E. Lupus Foundation in NYC. Join me (virtually!) on Tuesday, January 8th, from 12:30 to 1:30 pm to learn how to make the most of your doctor's appointments. Here are the details for the event - hope you can make it!

When you have a chronic illness, going to the doctor can seem like a full-time job. That’s why it’s so important to make each and every appointment count. In Listen Up, Doc!, you’ll learn tips on how to effectively prepare for and manage your appointments, pointers that go well beyond “make a list of questions”. And you’ll hear, first-hand from a patient-author, how to avoid the pitfalls that might be preventing you from getting the most out of your appointments. The goal?  Effective appointments that equal effective treatment, every single time!

Tuesday, January 8th, 2013. 12:30 to 1:30pm

Attendee Takeaways:

•    Learn how to prepare for doctor’s appointments
•    Learn how to make the most of your doctor’s appointments
•    Avoid pitfalls at doctor’s appointments
•    Effective Appointments = Effective Treatment

Who Should Attend:
•    People with lupus, particularly newly diagnosed 
•    Spouses and loved ones of people with lupus
•    Caretakers
•    Anyone with a chronic illness


Click here to register, and click here to make sure your computer is set for the webinar. It won't take but a few moments! 

Getting my flu shot - always an adventure

Per my post last week about feeling indestructible (or in this case, NOT), I recently got a flu shot. The shot itself went off without a hitch. It's about a 50/50 chance each year that I have a reaction to the flu shot. Half the time, I end up with flu-like side effects for a good day and half; the other half, I get off easy with no reaction at all. Thankfully, the last couple of years have been reaction-free, this year included. So, in fact, the shot itself went well, but filling out the paperwork required to receive the shot gave me pause.

First, picture me, walking into the pharmacy to get my shot: I'd had gloves permanently affixed to my hands all day long because my Raynaud's was driving me crazy (even in the 50-60 degree weather!), I had specifically chosen to wear pants rather than a skirt that day because of some unattractive bruising on my legs, and I'd just been to the doctor so I had band aids where my blood had been drawn. And while I hadn't given much thought to all that before I walked into the pharmacy, once I glanced over the paperwork I was about to fill out, I realized that my lupus, while clinically quiescent, was very much present!

As I perused the flu shot form, I started to wonder a) would the pen actually have enough ink for me to check off all of the boxes that applied to me, b) would my circulatory or bruising issues be touched upon, and c) was there room for another band-aid? (Of course there was, but for dramatic effect, I'll leave "C" in there!

So here's the way the form went for me:

"No" to Was I sick today? Cool.

"Yes" to Was I allergic to or have reactions to medications, food or vaccines? Of course. Where do I begin?

"Yes" to Was I on anti-coagulation medication? Indeed. 81 mg of aspirin, baby!

"Yes" to Do I have long-term health problems with heart, lung, asthma, kidney, anemia or other blood disorder? Oh yes.

"Yes" to Do I have cancer, leukemia, or another immune system disorder? Yes, and her nasty little name is lupus.

"Yes" to Do I take cortisone, prednisone or other steroids? Yes, oh, yes, I do.

"No" to Have I had seizures or other nervous system problems? Hurray for a "No"!

"No" to have I received a blood transfusion in the past year? Not this year, thankfully, but in years past, you betcha.

So after filling out the form, and taking stock of my current status (gloves, bruises and all), I was feeling a little less than perfect. Not down and out, just...not...indestructible. Know what I mean?

But the feeling of vulnerability left by the time I got home. My hands were warm and toasty from planting them in front of the heater on the drive home, the thought of my long pants and band-aids had exited my mind, and as I walked in the door, my girls called out, "Mommy's home!!" with all the excitement they could muster. They loved me, bruises, medicines, conditions, and all. Who says you can't live well, despite lupus?

Tuesday, December 11, 2012 - The Pillbags have arrived!

You can now add a Pillbag to your shopping cart! Sara Gorman's Pillbags are now available on Amazon, so shop away. Note that the Pillfold Bordeaux™ is the only design available on Amazon at the moment, but the other fabrics will be coming soon.

Of course, you can find ALL Pillbag styles and fabrics at any day of the week!

Monday, December 10, 2012

Another sad day in the world of lupus: Sasha McHale

Reading about 23-year Sasha McHale's recent death due to complications of lupus was upsetting. So upsetting, I thought about not posting the news. But then, I came across this article from the Huffington Post, and I thought, "Okay - I can handle this one." I couldn't finish the first few articles I read covering the tragic event. As a lupus patient myself and a mother of two young girls who just might end up with lupus someday, the articles that talked, in detail, about lupus death rates, complications of the disease, and less than positive outlooks for patients were just too much for me. But this one, I can deal with, as it provides a positive, yet accurate picture of what sometimes seems to be a rather bleak future for lupus and its sufferers. My heart goes out to the McHale family - I wish them strength in the days and weeks to come. 

Also in lupus news, singer Toni Braxton was recently hospitalized due to blood clots caused by systemic lupus, which she was diagnosed with a couple of years ago. My hope is that the much needed education and awareness of this mysterious disease will continue to grow with these high-profile stories, preventing tragedies like the death of young Miss McHale from occurring in the future.  

Friday, December 7, 2012

Grommets: Learning to appreciate the iterative process

Thanks to my innovative American manufacturer, which I praised a few weeks back, the Pillpouch just got a mini-face lift. Check out her shiny, new, silvery grommets. Very MADE IN THE USA, don't you think?

This most recent upgrade to the Pillbag production reminds me what an iterative process this manufacturing business is. Much like this living with lupus business, in fact.

In both cases, you try one thing, sometimes it works, sometimes it doesn't. Maybe it works for awhile, but then it stops working, so you try something else. Sometimes what you thought was sufficient no longer is, and so you try to improve upon it until you get it right. Thus, you continually build upon your knowledge and experience until you reach the outcome that you were after in the first place: a solid, well-constructed, good-looking Pillbag in one case, or a stable, controlled chronic condition in the other.

For lupus, all you have to do is go back through my old blog posts to see the dozens of drugs, treatments, therapies, and strategies I've tried (under doctor's supervision, of course) to try and tame my disease. I didn't expect there to be such trial and error, but there certainly was. I just wish I'd known that it's practically required for a disease like lupus.

Today, realizing that most solutions to my lupus dilemmas can only come through such a process, I can tolerate the trial and error a lot better. Knowing that as I'm trying one thing after another, I'm actually building a case that will get me the relief, the stability, or the diagnosis I need, and the wellness I deserve.

And I know that the trials with my Pillbags are important, too - for with each iteration, I'm simply improving the quality of the Pillbags. Since I started designing the bags last year, I've either changed, upgraded, or revised:  the grade of vinyl I use, the look of the logo tag, the placement of the logo tag, the way the logo tag is attached to the fabric, the type, color, and quantity of cording used per bag, and all of the suppliers that go along with it. Just recently, I changed up some of the fabrics we use, added grommets to the button holes, and altered the size of the hanging loop. Whew. Talk about trial and error!

But in an effort to improve - be it our life with lupus, or the Pillbag on our nightstand - we can learn to tolerate (and even appreciate) almost any iterative process. The trick is reminding ourselves of this fact during the process, rather than coming to the realization after the fact!

Wednesday, December 5, 2012

Former CEO Brenda Barnes - Setting an Example

I came across this great article several weeks back, and I'm finally getting around to sharing it. It tells the story of former Sara Lee CEO powerhouse Brenda Barnes, and her battle to recuperate both physically and emotionally from a hemmorhagic stroke she suffered at the age of 56.

Forced to take a leave of absence, and eventually resign from her duties at Sara Lee due to the fallout of the stroke, Barnes talks candidly about learning to accept help from others, make major lifestyle changes, and refocus her efforts toward getting better with the same determination she used in the boardroom. Good advice for any of us who have left full-time work, due to our illnesses:

Her stroke, more than any challenge in her business life, showed Barnes the power of accepting reality, recalibrating priorities, and redefining success. "I hate not being able to do it all," admits this fiercely independent woman who learned to rely on others. In the process, she grew closer to her family. She also channeled the intensity that she once had for business into a recovery that she calls "miraculous."

And the article concludes with the following, advice that's particularly applicable when you're faced with a chronic illness that upsets, to whatever degree, your life's plan:

"Barnes' advice to anyone else thrown off a career track: "You need a plan for yourself, just like you need a plan for a business." She adds: "I owe it to myself to focus on me." Fitting words, given that Barnes herself is a work in progress."

Be sure to check out the entire article here!

Monday, December 3, 2012

The "I" on my chest...

Wow. I mean wow. I just discovered gel nail polish (I know...hello!), and it really is amazing. I'm not used to nail polish actually staying on my nails; instead, I'm used to watching it go right down the drain, literally, within hours after a manicure. Once I wash my hand a few times, forget about the polish. But now...oh, my. Am I ever sold!

This new stuff really is indestructible. Even within 90 seconds of my gel polish being applied, the manicurist was rubbing lotion all over my hands and fingers, a thing I wouldn't normally do for days after a standard manicure. And the shine! My nails looked fabulous day after day after day.

With 10 shiny, intact polished nails staring at me after about 10 days, I thought, "You know? Some days, I feel just as indestructible." Some days, it's as though my life is completely unaffected by lupus. On those days, I have energy to spare. I wake up rested and go to bed feeling equally as good. I take a nap,  of course, but there's no debilitating fatigue clawing at me for an hour beforehand. All day long, I feel young and active and alive. When I take my medication, I don't even think twice. So what if a few pills and some lifestyle changes are helping to make me feel so good?  Feeling good means feeling good. And on days like that, I feel like living with lupus is a cinch.

But then, there are other days. Days when I feel anything but indestructible. On those days, the figurative "I" on my chest stands for things like "incapable" or "incapacitated." As I'm going about my day, unable to "do" or accomplish, I feel "inferior" and "insecure".  When I venture to the doctor, I feel more "intimidated" than anything, and my disease is best described as "inconsistent". On days like that, I may feel "immobile" and "incoherent", but I struggle to verbalize either, much less any of the other emotions mentioned above.

This serves as a valuable reminder to me that those feelings shouldn't be ignored. They are very real and very valid, and unfortunately, very common for people with lupus.

So here's the goal - instead of working so hard to construct a veneer of "indestructibility" on crummy days  like that, how about we seek "introspection"? How about we take time to evaluate how we feel, acknowledge and perhaps verbalize those emotions, and then remind ourselves that we won't feel those things forever, no matter how permanent they feel at present?  

Of course, I'm much better at doing this than I used to be. More than a decade with the disease has given me a good chance to practice. But here's hoping our days of indestructibility, be they intermittent or more frequent, give us the courage we need to get through the rest.