Monday, April 30, 2012

Becoming a lupus expert...over time.

I'm going to go out on a limb and declare that I half-way know what I'm talking about when it comes to manufacturing pillbags. I get the lingo, I call the materials by their proper name (1/2" zipper chain, 1/4" nylon flat cord, 8 guage clear vinyl), but when I started in the business just 6-8 short months ago, I knew nothing. In fact, when I called the manufacturer I'm now working with in New Jersey back in the fall, before I'd started manufacturing anything, he talked circles around me. Seriously - I couldn't even keep up. He fired away questions about materials and measurements, and I just kept saying, "uh-huh, uh-huh", even though my notes from that conversation reflect that I understood exactly zero from our phone exchange.

Fast forward six months, and oh, how times have changed. This time around, I'm throwing around the lingo and getting things done. Of course, I have my first manufacturer and my suppliers to thank for that - but I'm amazed at the comfort level, familiarity, and confidence with which I'm now able to talk pillbag manufacturing.

It just took time. And experience. And patience. The same three things it takes to become accustomed to dealing with lupus. Today, talking with doctors, throwing around medical jargon, and dealing with the curve balls the disease throws at me come a whole lot easier than they used to. In the beginning, I didn't think I'd ever be able to remember what a Complement level was or the importance of a SED rate, I couldn't imagine how I'd ever be able to contribute much of anything to my doctor's assessment of my disease, and I certainly didn't see how I was ever going to rein in that nasty little disease called lupus.

But here I am. Familiar, comfortable, and confident about living with lupus. I'm not exacatly ecstatic about it, but I'm doing okay.

And so is my current manufacturer...as I'm still scheduled to launch the Pillbag website tomorrow, Tuesday, May 1st. Log onto the PILLFOLD website tomorrow to order your new pillfold or pillpouch - which is sure to add a dose of style™ to your daily medicine routine (or the routine of a loved one, of course!)


Friday, April 27, 2012

Breaking up the task, in the name of lupus

I've recently rediscovered the value of what I'll call "the break up" - taking a break in the middle of a task in order to complete said task without pain, suffering, or both.

I've known this concept was an essential part of living with lupus for a long time. In fact, about two years ago, I posted about my compulsion to work butter into a scone batter recipe all in one fellow swoop - when doing so caused me nothing but terrible shooting arthritic pain. I realized back then that if I tackled the dough- massaging process in steps - resting for a few seconds while my fingers temporarily recovered - I could have yummy, delectable scones WITHOUT provoking a paralyzing arthritic mini flare in my hands. 

And even before that, I realized that breaking up the day with a nap was essential to making it through each and every afternoon. I've blogged about my nap a lot - but it's only because it's probably made the single-most difference in my life with lupus. There were days when the only reason I could even get up in the morning was because I knew I had a nap coming to me in less than six hours. And there have been countless times when an event comes up in the evening that pushes me way past my bedtime...but with that nap in the middle of the day, I can hang like the best of them. And really - my nap allows me to have a rested, enjoyable, and active evening each and every day. Without that break in my day, I wouldn't be able to make it pass 6pm. Ever.

So my most recent integration of the "break up" concept took place in my weekly workouts. As I've mentioned before, I jog about three times a week, for about 15 minutes each time. I'm not setting records, and I'm not logging a ton of miles, but I'm very happy with my 1.5 miles, three times a week. 

That said, I recently decided to throw some interval training into the mix, as we've all heard that doing so can really boost your heart rate, increase the calories you burn, and enhance your overall performance during a workout. So I tried it...and I love it! I run for about 12-13 minutes...walk for 1 minute...then pick back up and run for another 4 minutes. So now - I've added 3 minutes to my workout, log an extra 1/4 mile + to my overall mileage per run, and feel great doing it! (This, of course, is my own version of interval training...please consult a health professional before adopting this or any exercise regimen.)

Can you think of any tasks that you could break up, making it easier on your body to complete? And maybe it's not a physical advantage you would gain , but a emotional one. I say any kind of adjustment that makes life with lupus a little more enjoyable and a little more bearable gets an a-okay from me!  

(Okay...cue the Pillbags intro.) 


Wednesday, April 25, 2012

Drug Surplus? Join DEA's Rx Take Back Day.

Have you guys heard about this? This is news to me (thanks to my trusty side-kick reporter of a husband), but it appears to be quite a thing. The Drug Enforcement Agency is holding their fourth National Prescription Take-Back-Day this Saturday from 10-2pm. What is Take-Back Day? It's an opportunity to safely dispose of accumulated, unused and unwanted prescription drugs so that they don't fall into the wrong hands. Wow. What a good idea. 


If you click on the website of the Office of Diversion Control, you can find out a little bit more about the Take-Back initiative, and you can find the closest disposal centers within your zipcode. When I checked, there were more than 15 established drop-offs within a 12-mile radius of Gorman headquarters. At least I have options! 


Take a look at the details below, and search the locations nearest you here. How many pounds of pills were collected in the last Take-Back day? 377,086 pounds (188.5 tons) of unwanted or expired medications. Now THAT is an initiative! 


Got Drugs? Dispose of Unused RX, DEA Banner



NATIONAL TAKE-BACK INITIATIVE


April 28, 2012
10:00 AM - 2:00 PM

The Drug Enforcement Administration (DEA) has scheduled another National Prescription Drug Take-Back Day which will take place on Saturday, April 28, 2012, from 10:00 a.m. to 2:00 p.m.  This is a great opportunity for those who missed the previous events, or who have subsequently accumulated unwanted, unused prescription drugs, to safely dispose of those medications.
For more information, click here.

Monday, April 23, 2012

Letting the word "No" roll off my lupus tongue.

Believe it or not, this was a post that I was going to do back in October. I never got around to it, probably because October 2011 was a very busy month. Probably one of the busiest I've had in years. We had two birthdays to celebrate, a party to plan for and execute, overnight guests on 3 separate weekends, and two pillbags to design. Not to mention a slew of doctor's appointments, conference calls, and the like. But as things began to pile up, I made a distinct departure from the ways of the old Sara - the one who would have insisted on home cooked meals for all guests, would have had the house decked out from head to toe for the party, and the one who would have had cute coordinating outfits for everyone (including Darwin) for the entire month of events.

But not this time. Instead of continuing to stack on the to-do's - psyching myself up, and personally obligating myself to make things absolutely positively perfect, I just let some things go. I realized at the beginning of the month that I wasn't going to get it all done the way I would have liked, so you know what I said?

"Okay."

"Okay????"

I've never just said, "Okay" to the concept of letting things go. But here I was, willingly and of my own volition saying to myself, "nope...not going to happen." It was refreshing not to give myself an automatic guilt trip. It felt good to set limitations and not regret doing so. I liked how it made me feel to manage my life so that it was...well...manageable.

So when I sat down to write a post for today about saying "no", I realized I'd already touched on this subject before...I just hadn't published the post. So here's my latest triumph in letting the word "no" roll off my tongue:

Last week, I made a phone call to a potential retail store who has expressed interest in carrying my pillbags. I've been trying for weeks to get an appointment - but either the buyer was out of town, the floor designer was on vacation, or both. So when the designer answered the phone, mentioned that both decision makers would be in the store that day until 3pm, I almost bit. It was a little before 2pm...and the store was right around the corner.

But so was my nap.

And so, without missing a beat, I said, "Unfortunately, I'm not going to be able to make it over there today..." but offered up a slew of other options. Good news is that we've found time this week to meet...and the best news is that it's not going to conflict with my nap.

A reminder to keep my health at the forefront and pace myself came, most recently, from my fabulous and oh-so-famous patent attorney at Cloudigy Law - who said this: choose wisely when it comes to scheduling events and making commitments as I launch my bags. There's no reason to sacrifice my health for my bags, which are actually designed to make life with a chronic illness more manageable, right?

So in the end, the word "no" really IS starting to roll of my tongue. Fingers crossed it's downhill from here!

Friday, April 20, 2012

Uncomfortably numb: Reason #241 for using Peapod

I know I sound like a broken record, but ordering my groceries online and having them delivered to my door has been the biggest blessing for me. Not only do I save an hour of my time trudging to the store and back, the fact that there's no heavy lifting or shuttling of groceries from my cart to my car, and then from my car to the house is just the best. No stress on my joints, no unnecessary aches and pains. When the Peapod guy backs his truck into our driveway, the most I have to do is open our side door, give a little wave, and prop the door open for him. It's just the greatest thing going. I see no reason to ever go to the grocery again. Well, almost never.

Just recently, I found that we were pretty darn low on groceries. We were out of milk. And juice. And yogurt. And lunch meat. And about 50 other items that we usually keep stocked in the house. I was a day or two overdue on ordering Peapod, and while I had every intention of setting up a delivery for the next day, I found myself with an extra 45 minutes to kill one morning in between my dentist appointment (the retainer, remember?) and the time I had to pick up Deirdre from school. So I thought I'd be spontaneous and productive, and stop at the store, pick up the items we needed, and be done with it. Task completion at its best.

I chose the small grocery store close to our house - not too far of a walk in the parking lot, smallish aisles so I'm not logging a mile walking the perimeter of the store - and I was feeling good about my decision. (Note - it's a crazy lupus phenomenon that I can run a mile and a half without blinking, but walking around a grocery store for 45 minutes can wipe me out. Go figure!)

The store was practically empty, there wasn't a line at the deli counter, and the store looked stocked. But the store also felt cold...and I wasn't dressed to prevent a Raynaud's attack from settling in. And settle in, it did. By the time I walked away with my lunch meat and started browsing the cheese display, my finger tips went numb. And then my knuckles, and then 3/4" of all eight of my fingers went completely numb and were white as sheets. And then my toes went numb, too.

So there I was, heel-toeing it through the store, without any feeling in my hands at all, palming fruits, and managing the cart as best I could. I'm not saying it was a dire situation...it was just uncomfortable. And it could have been prevented.

So I will not make that mistake again. Either I keep my winter coat and gloves in the car this summer in case I get a wild hair to go grocery shopping again, or I'll stick to my keyboard for all of supermarket needs.

And I'll finish on a positive note - just so we stay solution-oriented here. I was talking with a girlfriend who has lupus and Raynaud's, and she was telling me about her recent skiing trips abroad. She had a great time, and as she was telling me about the snow, the weather, and the condition of the slopes, I had to ask about her Raynaud's and whether or not it posed a problem. She said it did pose a problem, but having logged over 10 years as a lupus patient herself, here was her solution: she got a prescription to help with the Raynaud's from her rheumatologist, but the only days she takes it are on the days she skis.

Of course. That would be an option, wouldn't it?

Not, of course, that I'm going to get a prescription for my little grocery-store adventures, but maybe for future outings...as I've thought about outdoor events during the winter holidays that just seem insurmountable because of the painful numbing that would occur.

But now, I have hope. I'll be sure to check with my doctor on the subject before proceeding. But hope is hope. And now, my digits have some.

Wednesday, April 18, 2012

The Pillbag Facebook page has launched!










Sara Gorman's Pillbags
9 likes · 1 talking about this






While it hasn't received quite as much press as the Space shuttle Discovery, the official Facebook page for Sara Gorman's Pillbags has launched.

Whew! I'm glad that's over. Being the non-Facebook user that I am, it was a bit out of my comfort zone to update and customize the page. But everyone emerged unscathed...aside from today's blog post. I had to choose - get the FB page ready to go, or do a post. You can see who won...but I'll be back on Friday with more lupus tidbits for sure.

And feel free to "like" my brand spanking new page when you get a chance: www.facebook.com/saragormanspillbags.

The official pillbag website - www.pillfold.com - is scheduled to launch on May 1st. We'll celebrate sassy little Pillbags, Mother's Day, Lupus Awareness Month all at the same time! 

Monday, April 16, 2012

Making the emotional investment...to live well!

For those of you who had braces as a kid, I'm hoping you can relate. For exactly one year in middle school, I wore braces. Then came the hard part - the retainer. Since it wasn't attached, the responsibility was on me to wear it. Or should I say, the responsibility was on my mom to make me wear it, since she and my dad were footing the bill for my orthodontia work, and it was clear they were going to get a return on their investment.

But fast forward 25 years, and the investment in my orthodontia, or rather, lack of investment, has now become my issue. Over the years, I've continued to wear a retainer at night - but it's been anything but consistent. I wore it when it was convenient, or when I remembered, or when I noticed my teeth shifting a bit. But about a year ago, sweet little Darwin decided he wanted to try on my retainer, and then my mangled retainer was no longer. So I needed a new one, but I put it off, and put it off some more. Just recently, I mentioned to my dentist that my teeth had moved significantly, and that I was ready to do a little crunching to get them back in shape. And he took pity on me (or maybe it was on Darwin), and offered to fit me for a new retainer at no charge. Sweet! I could get my new retainer, crunch my teeth a bit, and then go back to my inconsistent, yet sufficient retainer-wearing routine. But for now, my dentist wants results. He wants me to wear it as much as possible for at least the first few weeks, and then he'll see. He knows I have no intention of wearing a retainer day and night for the rest of my life...but he does want to move this crunching process along, so that in a month, I can just work on retaining, not crunching.

But I got to tell you - I'm finding it very hard to "remember" to wear it. The motivation just isn't there, mostly because I think the money isn't there. Without the financial investment, it's hard to force myself to wear it. I was honest with him that I wasn't going to be able to wear it much during the day, but I committed to wearing it during nights and naps, and any other down time that I could find. But even that's tough...when there's nothing but a little slap on the wrist at stake, it's hard to make the commitment.

And this made me think about the unique investment we have to make when we commit to living well, which isn't so much of a financial investment, as an emotional one.

When we decide to start making good, healthy decisions, we don't pay a membership fee to keep us committed to that healthier lifestyle. There's no money at stake when we decide to make adjustments to our lifestyle, cut back at work, or alter our daily routine. Sure, there are financial consequences to these decisions, but the financial investment isn't there to motivate us - so we have to come up with an emotional investment that's just as compelling. Our obligation to living well has to be rooted in knowing that on the other side of those healthy choices is a life worth living. One filled with happiness, mobility, fulfillment, and longevity.

So for me, I set goals - big goals that reminded me of where I wanted to be down the road, and little teeny goals that logged baby steps of improvement. I knew I wasn't going to go from debilitating flare-status on Monday to totally manageable lupus status on Tuesday. There was a lot of time, patience, and effort involved in making that big of a leap. But my goals kept me going.

What was one of my big goals? The prospect of having children. I knew that the only way I was going to get a shot at becoming a mom was to get as healthy, strong, and stable as possible. And to do that, I had to be on my best behavior - frequently. So that big goal was broken down into small daily goals - since the more often I napped, the more I attempted to cut out stress from my life, and the more successful I was at eliminating "shoulds" from my to-do lists - the closer I got to my goal,

It's not a perfect system - and there are no guarantees, just as there are no guarantees when money's involved either. But figure out your emotional carrot, and you're that much closer to sticking with the program of living well, despite lupus!

Friday, April 13, 2012

Nick Cannon - joining the club!

You've probably heard about actor, comedian, rapper, and television personality Nick Cannon's recent diagnosis of Lupus Nephritis, but I finally had a chance to catch up on his website, a few of his recent interviews, and his personal quest to raise awareness about lupus. Kudos to Mr. Cannon for his fabulous efforts and best of luck as he learns to live well, despite lupus!

Here's a link to some of his inspiring interviews, and his website. Now the big question on the table: which style of pillbag do I send his wife, Mariah Carey, who he claims tracks all of his medication? A Pillfold? A Pillpouch? And in what fabric? Be sure to cast your vote in the comments.

Of course, I'll include a copy of my book in his "get-well" package. It never hurts for Despite Lupus to be in the hands of the rich and famous!

Wednesday, April 11, 2012

My football career...down the drain.

So my recently diagnosed Raynaud's has thrown me for a loop this Spring. As the warmish spring afternoons sneak into chilly sunless evenings, I find that the cold sneaks up on me. Before I know it, I'm left with a handful of numb, stark white fingers that are anything but nimble. And they hurt. Thus, in our friendly neighborhood touch football games, I've, ahem, lost my touch. 


Not that I have a very good arm anyway. It's just that I enjoy getting out there and tossing the ball around with the neighbor kids. But when your fingers are numb, you can't throw. Nor can you catch. So my illustrious football career has come to a screeching halt - at least after sunset. But as these chilly spring nights give way to warm summer evenings - watch out. The Gormanator will be back. 


But this led me to believe that it would be very difficult for a professional athlete to manage a successful career with Raynaud's. Certainly not a football quarterback, or a pitcher in baseball. Nor would a golfer have much luck with no feeling in his or her fingertips. But in doing a little research, I found that at least one pro baseball player pressed on, despite his Raynaud's. 


According to Wikipedia, two time Cy Young Award winning pitcher Tom Glavine was diagnosed with Raynaud's Syndrome in 1990, right in the middle of a successful career as the second-winningest pitcher in the National League. With 164 victories during the 1990s, it doesn't seem like his Raynaud's was holding him back. 


Later in his career, when he was with the Mets, Glavine got a scare in August 2006. His pitching shoulder was tested for a blood clot because he was suffering from coldness in his left ring finger. This was originally thought to be a symptom of Raynaud's syndromeAccording to the pitcher, "Doctors... picked something up when they did the ultrasound." The results of that new test showed the problem could be treated with medicine, and Glavine resumed pitching on September 1, against the Houston Astros. He went on to pitch for a couple more years. 


Well, I guess he showed me. If you come across any other pro athletes living with Raynaud's, let me know. We'll add them to the list of inspiring people, living well, despite their illnesses! 

Monday, April 9, 2012

Lupus Fundraiser in Alexandria, VA - 4/16/12 - Mark your calendars

On Monday, April 16, a fabulous new restaurant in Cameron Station (Alexandria, VA) has graciously agreed to donate a percentage of sales to the Lupus Foundation.


PIZZAIOLO will be opening its doors from 5-10pm, and donating a percentage of its receipts to lupus charity. Be sure to come out for the event - come for dinner, grab a drink at the bar, get take-out, or stock up on their varied selection of beer and wine. You can also feel free to snag a Pillbag or a copy of Despite Lupus, as a percentage of my sales will also go to the Lupus Foundation that night. You can't lose!

LUPUS NIGHT AT PIZZAIOLO
MONDAY, APRIL 16th, from 5-10pm 
CAMERON STATION
4906 Cameron Station Blvd
Alexandria, VA 22304


I'll be there from 5pm until about 7:30pm...see you then!

Thursday, April 5, 2012

If anyone's keeping score...

my architect came in first.

About a month ago, the race was on between my manufacturer and my architect: who was going to get me their  "goods" first? (By goods - I meant pillbags and revised plans, respectively, and by "first", I actually meant April 1st.) Turns out, my architect got the job done. Updated and revised, the latest and greatest version of renovation plans for the Gorman homestead were delivered to us at the beginning of this week - and walk thrus with contractors were conducted on Wednesday. As far as timeliness goes, these guys are earning serious brownie points, although I'm sure they'll try and stock pile them for later, when construction is stalled for days on end.

Of course, in my previous post about this, I'd concluded that it didn't really matter if either of them met my imaginary deadline. And it's true. It really doesn't. As I sit here today with a website ready to launch, cute packaging ready to be unveiled, and the concept of stylish pillbags prepared to go viral (!), I can only sit back and be patient while my manufacturer works out the kinks.

I could rant and rave about the delays (and I can be very good at ranting and raving), but what good will that do me? I'll get all hot and bothered, my stress level will rise, and I'm sure I'll say things that I'll regret. And I probably won't feel very good after a few days of successive ranting and raving...since R&R can rarely be switched off quickly. And in the end, I'll look pretty silly. Just as silly as I used to look when I would throw a mini-tantrum about taking a nap in the middle of the day.

As I've mentioned before, I used to just lose my marbles over my nap. No matter how casually and without condescension my husband would ask about my nap, I would get so mad when he'd question whether or not I'd been able to fit one in on any given afternoon. I wasn't mad at him - I was just mad that my life had to change. That things weren't going as I'd planned. That life had taken a turn.

And so I've learned to try and take those turns in stride. Not in complete stride...but in what I would call partial stride. I still get mad. I still lose my temper. I just don't let it overwhelm me. Lupus loves when I get overwhelmed...I think it's her favorite time of year...so I need to do everything I can to keep lupus from getting what she wants.

So here's to waiting patiently (albeit assertively) while my bags get delivered. Deirdre's waiting just as patiently for the Easter Bunny, so at least we'll be able to wait together!

Monday, April 2, 2012

Pillbags - The Starting Line Up!

Pillpouch - $24.99

 Pillfold - $39.99
The Montego™ line - Striking teal and crisp white zigzag. Named for Deirdre's trip to Jamaica. She had a blast!
The Sebastian™ line - Creamy white with green. A bit of a vintage, seaside feel. Hence, it was named after Deirdre's first trip to Spain, to the coastal town of San Sebastian.

The Cambridge™ line - Striking teal with splashes of brown, cream and green. Deirdre's most recent trip to Europe included a stop in Cambridge, England. She decided to take her sister along on that trip. Thank goodness Bernie had an updated passport!




The Bordeaux™ line - Classic navy and cream, named for one of the Gorman girls' favorite cities in France. Deirdre and I witnessed Bordeaux's first snowfall in over thirty years. That alone made it worthy of a Pillbag name!









The inside of the Pillpouches...




And the inside of the Pillfolds...





Which bag is right for you? Depends on how you dispense your meds. Do you count them out each week, so that you're sure to take the right pills on the right days at the right times? If so, the Pillfold is for you. It's great for on the go pill-taking, too!

The Pillpouch would be your bag of choice if you just need a cute, sassy little bag in which to organize and store those awful-looking, orange plastic pill bottles. And it's perfect for traveling - just throw your Pillpouch in your suitcase and go.