Wednesday, March 27, 2013

Keeping the bar high - even in the rental house

Our renovation is sailing along...we're just days away from being 50% complete. On time, and on schedule. Yippee! We're officially in what I call the "giddy" stage. Every time I go back to the house to check out the progress, I get goose bumps. It's so exciting to see the plans come together. Here's a quick peek at one of the recent additions to the house - our wall of windows that looks out our back yard:



This is one of the primary reasons we did the renovation. Mission accomplished!
Of course, as the house gets closer and closer to being finished, the rental house we're in grows less and less appealing. It's doing the job, and we're getting by just fine. But I'm ready to get back into a larger living space, where I can nap in solitude, the girls can spread out a bit, and Johnny has his office back. Just the thought of a normal size master bathroom makes me excited.
I'd kind of forgotten how small and old the rental bathroom was until I took a shower in the girls' bathroom just a few days ago, which is bigger, newer, and much nicer than the master bath. Wow! Was that ever nice! I can't believe how accustomed I'd become to the conditions of the other bathroom. In this case, it was a positive that I'd learned to overlook the situation. Sometimes, you just have to close your eyes and put your head down to get through a situation that's less than favorable (like a dingy old rental bathroom.)
But other times, particularly when it comes to living with a chronic illness, you have to be careful about lowering your standards. Pain, suffering, fatigue aren't absolutes when it comes to living with lupus. Yes, life is different. And yes, there are adjustments to be made because of symptoms like those listed above. But life with lupus doesn't have to be unbearable. And it doesn't have to be hopeless.
Here's a quick excerpt from my book, Despite Lupus, touching on this very subject. Let's make a pact that we won't lower our standards - in or out of the master bathroom!
breaking the spell
At some point along your journey, you’re bound to lose your objectivity, too.
Given the myriad aches, pain, swellings, rashes, and fevers to which you’re subjected,
do you really know what “good” should feel like anymore? I’m not asking if
you can describe the feeling; I want to know if you remember what it actually feels
like. I bet it’s been so long since you felt 100%, you no longer can imagine that
exact sensation. Passage of time, conditioning, and relativity have recalibrated
the measuring stick you now use to determine how much hurt is enough, and how
truly sick you are. The gauge you use today can only be the pain from yesterday, but
how insufferable was the pain even then? Maybe your complaints are fewer than
they’ve been in the past, but why should functioning with any health complaint
suddenly be acceptable? An objective assessment of your health is no longer possible
because you’ve reduced your expectations to accommodate the changes in
your functionality and appearance. The ailing, broken-down, failing body you see
in the mirror somehow looks more familiar than not. It’s as if “normal” has been
redefined to mean “that which is bearable” and the ache in your hip or the joint
pain in your hands is now customary. Your standards have been compromised.
Now it’s time to reconsider what “normal” should really look and feel like.

Monday, March 25, 2013

Lupus gets some air time...on national television!

Check this out...a little product placement for the Lupus Foundation of America! Here's a screen shot of a scene from a recent episode of Cougar Town. I've personally never seen the show - a friend sent me the photo above - but if TBS is such a lupus supporter, I may have to start tuning in!!

Along these same lines, I've been catching up on old episodes of 30 Rock, and it seems as though Liz Lemon can't drop the old "L" word often enough. I've counted at least three or four episodes where "lupus" has been mentioned. Sure, in some instances, the disease is a little misrepresented, but I think anytime the word "lupus" is mentioned on national television, we gain recognition. I bet at least one person, if not ten, pondered, discussed, or looked up the word "lupus" after it was mentioned on each episode. If so, that's at least one (or ten) more people talking about it. I know some disagree, but I thank Tina Fey and the folks at 30 Rock for bringing a little more attention to this nasty unknown disease.

Friday, March 22, 2013

A cup of tea: Definitely an acquired taste, just like lupus

Before I turned 21, I could count on one hand the number of cups of hot tea I'd tried. Three, maybe four, definitely no more than five. I just didn't like it. The Earl Greys and the fruity blends didn't do a thing for me, and it was anything but enjoyable to sip a cup of what I thought was just colored water.

Since then, however, I've become quite the hot tea drinker, pouring myself 3-4 cups of hot tea a week, particularly during the winter months, and especially if I'm feeling a little under the weather. In fact - during a flare, I estimate drinking 3-4 cups of hot tea a day. I guess I've changed my tune, huh?

It definitely was an acquired taste for me. When I was younger, I promise you, I tasted absolutely nothing in those cups of tea, and I "felt" even less. It wasn't a calming or soothing experience in the least bit, and the tea nor its warmth made me want to savor the experience or repeat it anytime soon.

And yet, today - I don't want a cup of tea to end. It's such a relaxing, enjoyable routine for me, and one that I look forward to indulging in alone, or with a friend.

So how does that happen? How does our perspective change so dramatically? How does something that we genuinely despise turn into something that we sincerely enjoy? I suppose time and age have something to do with it, as well as this notion of an "acquired taste". I've evolved, and so have my likes and dislikes. So have my tolerances and intolerances. 

When I was first diagnosed with lupus, I was absolutely intolerant of the changes I needed to make to accommodate the disease. Sleeping in the middle of the day, taking it slowly, watching my stress - those were all unacceptable to me. I despised the idea of ratcheting back - everything about it felt wrong, and it left a bad taste in my mouth, just like that Earl Grey. But once I started to experience the positive effects of accommodating the illness, and embracing the disease rather than fighting so hard against it, it actually wasn't the bitter experience I assumed it would be. It was a relief to have surges of energy again due to my increased sleeping habits. It was a joy to be able to go out on the weekends, albeit sparingly, because I'd learned to take it slow during the week. It got easier to ask for and accept help, manage my symptoms, and set my boundaries so that I was no longer struggling through each day. Life got a whole lot more enjoyable...and I began to "like" living again.

So here's to the acquired taste of living with lupus. You may not start out liking it, but eventually, I think you'll learn to do just fine, despite it.

Wednesday, March 20, 2013

Dine for Lupus: Cafe Pizzaiiolo in Cameron Station tonight!

Don't forget - tonight's big event in Alexandria, VA - a charity fundraiser at CafĂ© Pizzaiolo for Lupus. Who wouldn't want to eat a slice of pizza for such a good cause? Last year, a woman walked in, had no idea there was a lupus event, and was almost brought to tears because her sister had just been diagnosed with lupus. She ended up getting two copies of Despite Lupus - one for her sister, and one for herself, as she was anxious to learn about the disease, too. What a coincidence!

Details are below - and be sure to look for me at my table filled with Pillbags and books. A few select pieces of my new spring line will be available. Be one of the first to snag a new Pillbag!

Wednesday, March 20, 4:00pm - 9:30pm

Cafe Pizzaiolo - Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304
Cafe Pizzaiolo (and Sara Gorman's Pillbags!) will donate a percentage of sales to LFA-DMV. Come for Happy Hour, dinner or dessert!

Monday, March 18, 2013

Despite Lupus hits the Purple bus!


Guess who I hung out with this weekend? The Purple bus!

I had a great time at the LFA Virginia Summit in Richmond on Saturday. The event coincided with the arrival of the Purple bus on the VCU campus. I was anxious to go in, and I wasn't disappointed. As you can see from the pictures below, I got a chance to where 3D glasses (which always makes me happy), and the interactive displays were great.

Look at me being surprised, even!

A big thanks to everyone who came out for the event, and to my new (and repeat) Pillbag and book customers. Who doesn't need a Pillfold in every color?

And many thanks to Johnny for driving me down, helping to man the booth, and running the show while I slipped away for my afternoon siesta. I fit in a nice nap while he stood watch, and then I relaxed as he chauffeured me the two-hour ride home. Last year, I made the trip by myself, and vowed to never do it again. I got way too tired, and I have enough lupus years under my belt to learn from my mistakes. So - we hired a babysitter for the day, and hit the road. We made a great team! (Photos by S. John Gorman - his stage name.)

Friday, March 15, 2013

Raynaud's tip: Prompted by a visit to the grocery store...again.

I'm in a grocery store rut - and I can't break out of it! I haven't placed an order for Peapod in almost a month...and both my schedule and my Raynaud's are paying for it. February 19th was the last time I placed an order with my favorite grocery delivery service, so since then, we've been running to the store every few days to pick up "the essentials." But after three and a half weeks of trips that start out to be 15 minutes but end up to be 30-40 minutes plus, I'm ready to break the cycle.

We started out well - deciding to maximize the food we had in the fridge by just replenishing the stuff we ran out of after a few days - milk, juice, lunch meat, etc. And it was working well. Johnny would run to the store if I needed an ingredient for dinner, Bernadette and I would make a quick stop after dropping Deirdre at school, or the girls and I would run over after nap time and pick up a few things. They love riding in the shopping cart shaped like a car, and I convinced myself it was a productive and enjoyable time for all of us. But it turns out, I was working pretty hard to sell myself on that idea.

Truth is, those trips weren't a very good use of my time at all. Without fail, a trip to pick up a few things results in a cart full of groceries, and twice the amount of time at the store. Add to that loading and unloading time, and the fact that anything with little lovelies in tow takes longer, and I've already eaten up three times the amount of time I had planned.  

And considering that my Raynaud's fingers (and toes) go numb when I simply pull into the store parking lot, my Despite Lupus and Pillbag to-do's continue to increase, and our renovation is demanding more and more attention as we grow closer to finishing, time spent at the grocery store is  time ill-spent. I need to leave the grocery shopping to the professionals, and get back to addressing the essentials on my to-do list. Too many things were piling up at the end of the day unnecessarily - and I'm pretty sure it was because I was using my catch-up time to stock up the kitchen. How inefficient is that!

So enough is enough. A much-needed Peapod order is on its way to our rental house this weekend, and I've been sufficiently reminded of why I love the service so much.

Of course, a DL post about grocery-shopping wouldn't be complete without a Raynaud's tip, right? So here it is - straight from the doctor's mouth: you can reuse hand warmers. My rheumatologist, who is a big fan of hand warmers himself, says that if you use a hand warmer for a few hours one day, you can reuse it the next day. Simply put it in a Ziploc bag, making sure all of the air is out of the bag, and seal it up. When you take it out for use the next day, it will rewarm just like a new one. I can't speak from experience on this one, because I haven't tried it yet. But I plan to. Thankfully, it won't be on a trip to the grocery store anytime soon!

Wednesday, March 13, 2013

A cure for lupus: What if?

While I was in Memphis shooting the lupus video I blogged about a few weeks ago (video to be unveiled soon - I can't wait!), the young lady spearheading the video project asked me a question. It was a poignant question - probably the best question that was asked all weekend: What would my life look life if there was cure for lupus?

It's such a great question, one that many lupites have probably asked themselves many times before. And I should have been able to come up with a really great answer. But unfortunately, in the midst of the interview, one in which I talked freely about the notion of "living well, despite lupus", and making the most out of the life I'd been given - I just couldn't get there. I couldn't switch gears and talk about life WITHOUT lupus, because I've tried so hard to embrace my life WITH lupus. Dealing with the reality of the situation, that I have lupus and it's not going away anytime soon, has helped me tremendously to persevere and overcome. The facts are these: I have a chronic illness, I have to figure out how to live with it, and I can either do so kicking and screaming,  or I can figure out a pro-active, positive, productive approach that will ideally lead to a happy, healthy, fulfilled life, with lupus in tow.

And that's basically how I answered the question. Not very direct, and not the answer I'm sure she was looking for. But a lupite can only do what a lupite can do.

But now that I've had a chance to mull over that question, outside of the context of trying to make lemonade out of lemons - I've been able to come up with a few things that would indeed, be different, if there were a cure for lupus:

No More Nap: I wouldn't have to take a daily nap; I wouldn't have to rely on someone else to care for my girls every afternoon; I wouldn't have to decline Deirdre's invitation to go outside and play everyday around 2pm; I wouldn't have to come home early from luncheons, cut short shopping trips with my friends, or schedule each and every day around my 2-4pm napping ritual.

No More Doctors: I wouldn't have a schedule-full of doctor's appointments to juggle; I wouldn't have a pile of insurance paperwork to file every month; I wouldn't have to worry about hitting the prescription drug cap on my insurance plan; I wouldn't be on a first name basis with my pharmacist; I wouldn't have to get weighed every few weeks at a doctor's office; I wouldn't have to find time to get chest x-rays, conduct 24-hour urine tests, or the like.

Lifestyle: I wouldn't have a slew of pills to take everyday (although since I do, the Pillfold is a nice touch!); I wouldn't have to worry about a swollen finger, an achy joint, or a patch of hair loss, much less any other symptom I try to dodge daily;  I wouldn't have to clock my time in the sun; I wouldn't have to spread out my travel in order to "rest up" in between trips; I wouldn't have to strategically schedule flights, car rides, school activities, outings, or errands, just to make sure I didn't overdo;

Now, that said, I don't want to dwell on these observations too much. Yes, they're all true. And sure, lupus can be a real party pooper when it comes to living life. But I have so many blessings to be thankful for. I've made so much emotional and physical progress in regard to my disease, it's hard to be resentful. My attitude toward lupus and life with the disease started to improve the moment I decided to leave my resentment and anger at the door. The life I have today, limitations, medications, and all, is one that I've learned to love. It's a life worth living.

But I will say this - just because I've learned to "make do" with lupus, doesn't mean I wouldn't prefer that my girls not have to. If there were a cure for lupus - the most impactful change in my life would be that I'd never have to worry about my girls living with lupus. And I like the look of that.

Monday, March 11, 2013

Lupus hair loss - what mine looked liked, literally!

For those of you wondering just how short I've had to cut my hair because of lupus hair loss - I found a couple of visual aids.

In the process of transferring all of my data from my old computer to my new one, I ran across these nostalgic photos and thought I'd share, as I don't think I ever have before.  Of all of the emails, comments, and questions I get about lupus, I think the subject that I hear about the most is hair loss. How long does it last? How bad is it? What can be done in spite of it?

I've written quite a few posts on it, because I've dealt with significant hair loss several times in the 12 years (and two pregnancies) I've had since being diagnosed with lupus. And none of them were fun. But these pictures symbolize what was likely the most significant turning point in my life with lupus:
Cutting off all of my hair to minimize the emotional and physical damage that my latest case of hair loss had caused. This was by far my worst bout - leaving me with literal strands of hair left on my head. So, instead of holding onto those strands (and my life before lupus) for dear life, I decided to start over. And this super short haircut was the first step.

You can read about the whole ordeal here - but here's what you should know: the reason I have these pictures is because the moment I walked into the house with my new haircut, Johnny took one look at me, told me how gorgeous I looked, and insisted we do a photo shoot. Here's the excerpt from my book:

After my hair appointment, I went home to show Johnny my new ‘do. He absolutely loved it! He thought I looked like a sophisticated model from a magazine, and immediately insisted that we have an impromptu photo shoot in the back yard. The loving, enthralled look he had on his face as he shot those pictures made me feel like I was the most beautiful woman in the whole world. He was always telling me I was, but I will forever cherish the captivated way in which he embraced me and my new haircut that day. After shooting a few pictures, he proudly sent them off via email to some family members, who all responded with complimentary remarks.

(If you think I might have shed a few tears while writing this post, you're right!)

I can't tell you how wonderfully loving and supportive Johnny was that day, and every day since. Not a day goes by when I'm forced to face this nasty little disease on my own. Surrounded by friends and family, including a husband who loves me, lupus and all, I have no excuse not to do my best to live well, despite it. I owe it to the people who believe in me, who trust me to do the right thing, and who are counting on me to do what I can to be happy and healthy for a very, very, very long time in the future. I promise to do my part...fingers crossed.

Friday, March 8, 2013

Reluctantly unplugged: Working not-so-furiously to stay afloat

Last weekend was a tough one: my computer and my mobile phone conked out on the same day, with no replacements in sight for nearly a week. Is that even legal?

I struggled to make it through the week while I was technologically deprived, snagging a moment here and there when I could hop onto Johnny's desktop to do a little catching up. I definitely take for granted the accessibility I have with my cell phone and laptop: I couldn't make a call while running errands; I couldn't check a customer's address while at the post office; I couldn't even send an email at my leisure. How dependent I've become on my mobile devices!

And to add to the mayhem, last week was the first week without our afternoon babysitter. Johnny and I had to do some adjusting in order to cover my nap, juggle the computer, and fit in my work stuff - fulfilling orders, returning calls, etc. The week was not what you'd call a smooth one.

That said, I have to applaud myself - for as hectic and nerve-racking as the week was, I didn't fall into my usual trap of complicating the situation with a lack of sleep. Often times, when work/home/renovation tasks start piling up, I find myself reverting to my old "push through" mentality --  my default in times of stress. I stay up late and get up early in order to get things done, sacrificing much needed sleep that I don't make up for during the day. I convince myself that in order to re-establish order in times of chaos, I need to work around the clock to get things under control. Of course, I miss the fact that I'm only adding to the chaos by doing so.

But this time - I chose wisely. I didn't add to the chaos. I didn't drive myself mad trying to catch up at night. I didn't make list upon list of the stuff that was piling up. In fact, I did the exact opposite. I recognized that a good night's sleep was the one thing I could do to HELP the situation, and got 10 hours of sleep at night for several consecutive nights. Thus, I woke up rested and relaxed, ready to face the complications of the day. I troubleshooted with ease, simply because I had the wherewithal to do it. I wasn't running on empty - so those tasks that I had let slide the night before got quality attention the next morning - albeit sans computer and phone. I was able to strategize my efforts to keep Gorman/Pillbag/Despite Lupus headquarters running smoothly, in a way that would have been impossible had I been exhausted. My lupus fatigue is very unforgiving - uncompromising and inconsiderate, too - and I would have been completely unproductive had it been present. I needed to be at my best in order to make it through the week, not my busiest - a fact I can attest to, now that I've done it.

So mark one down for the lupite. Sara: 1; Lupus: 0. I'll update my spreadsheet - as soon as I have a computer to do it on!

Wednesday, March 6, 2013

March Madness: Lupus style

We have two events coming up at Sara Gorman's Pillbags, and I hope you can make it!
Coming up on Saturday, March 16th, I'll be heading to Richmond, VA to participate in the LFA-DMV's annual Virginia Summit, which is always a great day of lupus education, support, and awareness. I'll be setting up shop with my book and Pillbags, alongside several other vendors, so be sure to stop by while you're there. 

I'm also hoping to take a tour of the interactive Purple bus as it makes a stop in Richmond along the Help Us Solve the Cruel MysteryTM National tour. Here's a description of the summit itself - and you can register for the great event here:

Virginia Commonwealth University
Jackson Ward Room & Court End Ballroom
900 Turpin Street
Richmond, VA 23219
WHEN: Saturday, March 16th, 1:00 - 4:00pm
WHAT: The patient education program, Lupus: Learning and LivingTM, is designed for individuals with lupus and their families and friends.  Receive the latest information from world-renowned experts on how to live better with lupus. 
Dr. Richard Furie, Hofstra North Shore-LIJ School of Medicine
Dr. Betsy Blazek-O'Neil, Allegheny General Hospital 
Dr. Joan T. Merrill, Oklahoma Medical Research Foundation
Light snacks and refreshments will be provided.
Also coming up on Wednesday, March 20th, in Alexandria, VA, I'll be joining the LFA-DMV to host a Lupus Night at Pizzaiolo, where a percentage of the evening's proceeds will go to lupus charity. I'll have a table set up with my books and Pillbags - and will look forward to seeing you there. Don't forget - 5% of sales at Sara Gorman's Pillbags ALWAYS goes to lupus charity, but wouldn't it be fun to hand pick your pillbag? I'm hoping to unveil my new spring line at the upcoming event - fingers crossed my manufacturer cooperates!
Wednesday, March 20, 4:00pm - 9:30pm

Cafe Pizzaiolo - Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304
Cafe Pizzaiolo will donate a percentage of sales to LFA-DMV
Come for Happy Hour. dinner or dessert!

Monday, March 4, 2013

Lupus: life delayed, if only temporarily

I recently started wearing bracelets again, and I'm thrilled to have my wrist bling back! When the girls were really little, fun, chunky bangles just didn't work for me. Their little bodies were unforgiving when it came to my arm wear...and when I went to pick them up, I couldn't ever remember to move my bracelets from one arm to the other fast enough to avoid the pain of metal grinding against flesh and bone. What's more, when my bracelets did make an appearance, the girls were so enamoured with my jewelry, they would plead with me to let them try the bracelets on, and very rarely were they returned to me in one piece, if at all. So I just put that part of my accessorizing life on hold (along with dangling earrings), until the girls and I were ready.

And now we are. So let the bangles and dangles emerge!

I knew the day would come. I just had to be patient. Just like I had to learn to be patient with many aspects of my life with lupus. Since being diagnosed, I've had to put a lot of things on hold - my career, having kids, traveling the world, driving a convertible - and I reluctantly learned the art of waiting along the way. Waiting until a flare was gone, waiting until I was stable and strong, waiting until the medication kicked in. Today, I'm happy to say that many areas of my life that were once delayed have come full circle, and many aspects of the disease that I never expected to change have done just that.

My disease is different than it was 10 years ago, or even 5 years ago. And I've tried to chart the slow, yet positive progress every step of the way. Just when I thought my sun sensitivity, my lack of energy, or my level of fatigue would never improve - they did. Just when I figured I'd never be able to survive on less than 10 mg of daily prednisone or go more than 8 weeks between doctor's appointments, I did it.

Today, I feel there are very few things that I'm still "waiting" on. I'm certainly still waiting on a cure, just like you - but so many things have changed over the years, I'm hopeful that the time will come for that to. Stay tuned for an upcoming post on what an actual cure would look like to me. (And thanks to Jess for posing the question!)

Friday, March 1, 2013

En vogue medical supply bags of the world...UNITE!

So much excitement this week at Pillbag headquarters. We filed our final response to the Patent and Trademark Office earlier this week, so the fate of my utility patent is now in the hands of the examiner. I feel pretty good about the filing after the interview I had at the PTO, and we're definitely putting our best foot forward.

My attorney commented that because aspects of my bag were designed with specific purpose - for instance, the zipper pulls must be oversized for arthritic fingers, and the morning and evening pouches must be side by side for continuity -  these help to set my Pillbags apart from anything else out there. We shall see - goodness knows the stylish medicine-takers of the world need a better solution than a plastic, clunky pill box!

Camino in Royal Princess OliviaAlong those lines, I was thrilled to discover a new line of stylish "medicine" bags in the marketplace - elegant, sophisticated bags specifically designed to carry daily diabetes suppliesMonica Vesci Copenhagen has just launched a line of Camino Clutches, and they are absolutely fabulous. They truly are "little luxuries for life with diabetes."

I mean, how great is this little guy above?
Inside, there are designated spots for all of the diabetes essentials, plus everyday essentials:

  • Hidden Round Disposal Container
  • Insulin Pens
  • Needles
  • Syringes
  • Lancing Supplies
  • Test Strips
  • Glucose Meter/Extra Batteries
  • CGM
  • Glucose Tabs
  • Insulin Pump Supplies
  • Back-Up Insulin
I cannot tell you how exciting this is - someone else venturing out into the marketplace, in an effort to bring style and grace to the lives of those with a chronic illness. I applaud her efforts and design, and look forward to more developments in the world of medical-supply-bags-gone-en-vogue. There's always room for more!

See Monica Vesci's entire line of products here and be sure to like her Facebook page here!