Friday, April 25, 2014

ALR's Glossary of lupus terms--I love it!

I just came upon this interactive, multi-media glossary of lupus terms, provided by the Alliance for Lupus Research, and I think it's fabulous! 

All too often, there's a lupus term that I think I know, but realize in the end, I really don't. I find the "Rule of Repetition" to be a good gauge here: if I can explain it to someone else, that means I understand it myself. If not, it's off to the glossary I go!

Check out ALR's Lupus glossary here, and let me know if you learn anything new!

Monday, April 21, 2014

Despite Lupus' Spring Speaking Tour 2014: LFA Indiana - Indianapolis

One of the last stops on the DL Spring tour will be one of my favorites - my home state of Indiana. The LFA Indiana Chapter has always been so good to me, welcoming me back every year or two to participate in their workshops and symposiums. This year's event is a fun-filled weekend, starting with an afternoon of awareness and a stop from the Purple Bus - LFA's educational and interactive touring bus. I had the opportunity to tour the bus in Richmond last year, and I was absolutely blown away. You can see me enjoying the interactive displays below.

Touring the bus is a great way to learn a few new tidbits about lupus - so be sure to stop by, and bring a friend while you're at it. You won't want to miss it! Details of Friday's Purple Bus stop are below:

And then the fun continues on Saturday. In conjunction with Lupus Awareness Month and World Lupus Day, LFA Indiana will host a “Living with Lupus” Symposium on Saturday, May 10 from 10 a.m. to 2 p.m. at The Mariott, 2625 N. Meridian St. in Indianapolis. Experts and topics scheduled include:

·         Dr. Kathleen O’Neil, Pediatric Rheumatologist — Advances in Lupus Research
·         Judy Schaff, MS — Mental Health Management of Lupus
·         Sara Gorman — Author:  Despite Lupus: How to Live Well with a Chronic Illness

Looking forward to presenting on Saturday, and setting up shop with the Pillbags and books. I'll have plenty of Pillfold Colina's on hand - as they're the best seller thus far in April. I think it's the cracked Easter egg look! 

Friday, April 18, 2014

Barbeaux Formulaire - my new favorite line of skin care!

Barbeaux Formulaire Body LotionOne of my girlfriends recently introduced me to this line of bath and beauty products, and I am hooked. It's called Barbeaux Formulaire, based out of Carmel, Indiana, and their natural skin care products are heavenly!

The Barbeaux Formulaire line was originally founded on their bath powder, which is 97% organic and is infused with jojoba oil, african shea butter, pink Himalayan sea salt, and cornstarch. It can be used for aiding eczema, diaper rash and other skin conditions, in addition to just being a fabulous soak or shower exfoliator for a tired, aching body! It's the curator/owner's great grandmother's recipe, which makes it extra special. 

All of their products, including the lotion seen here that I'm totally in love with, come beautifully packaged like this and are cute enough to leave out on your bedside table (next to your stylish pillfold, right?) 

This lotion, infused with aloe vera, african shea, almond oil and jojoba oil,  has absolutely transformed my feet. After using it once a day for two to three weeks, I now have a pair of soft, supple, baby-like feet - which, my family will tell you, is a feat in and of itself! Apparently, each oil penetrates the skin layers differently, thoroughly and deeply moisturizing right where you need it most.

If you're in the Indianapolis area, be sure to check out Barbeaux Formulaire's FB page to find out where their products will be next, or check out their products online here

Wednesday, April 16, 2014

Despite Lupus' 2014 Spring Speaking Tour - LFA D.C Maryland Virginia

The next stop on my Spring Speaking Tour - Washington D.C.! I'm pleased to be working with the LFA DMV once again, this time speaking at one of the breakout sessions at the 19th Annual D.C. Summit. Details of the workshop I'll be doing are below, along with details for the entire event. The Summit is sure to be one of the most educational and worthwhile events this year - I know I'm looking forward to attending the other sessions while I'm there! And be sure to look for me at my Pillbag and Book table in between sessions. You won't be able to miss the display of brightly colored Pillbags! 



Saturday, May 3, 2014
Registration:  8:30am - 9:00am
Summit:  9:00am - 3:30pm
George Washington University Hospital Auditorium
900 23rd Street Northwest Washington, DC 20037 | (888) 787-5380

Monday, April 14, 2014

Debunking the "I'm so busy" myth. It's about time!

I love the article from Tyler Ward about being "busy", titled "Busy isn't respectable anymore." Obviously, for someone who is considerably less busy than she used to be, due to health constraints, but also due to choice, it's great to hear that being busy isn't all its cracked up to be. And per his article, there actually might be disadvantages to proclaiming to be so "busy" in the first place.

You can read the entire article here, but I particularly like the snippet below about the "busy" experiment. I've tried it (striking the word "busy" from my vocabulary), and it really does work. In fact, a few weekends ago, we visited our extended family, and when I responded to the typical "How's the Pillbag business?", I forced myself to come up with something other than "Busy, thanks." I elaborated, I went into detail. I actually took the opportunity to engage in a conversation, rather than shutting it down by simply replying with the typical "Busy" comeback.

Here's the snippet, and don't miss the entire article here. Enjoy!

Paul reached out to me about an experiment he and his wife did last year revolving around the issue of busyness. I thought it too good not to share.
Enter Paul.
My wife and I began noticing that everybody in our circle of influence, including ourselves, responded to virtually any question with “busy.” Normal questions? busy. Normal life? busy. It was evident that the new normal was a declaration of busy.  It became the new mantra for living in the 21st century.  ‘I am busy.  Hear me roar!’
So, we decided to conduct an experiment.
We decided to never use the phrase BUSY as an answer for an entire year and to see if there were any changes in attitude and/or behaviour. Ours. Theirs.
We noticed alright.  Instantly.
We were forced to describe our own situations with more clarity, and without our best friend ‘busy’ to blame, we engaged with people more authentically. As we did, we noticed the general depth of conversations increase as we and those we were sharing with, were invited to communicate differently about our actual states of being.
We stopped manipulating our friends. We weren’t actually aware that we were doing it before, however with that little four letter word excommunicated, we no longer predetermined the ubiquitous auto-response – “me too.”
We also quit guilting other people with all of our so called busy-ness. There’s nothing quite like the overachiever in the crowd diminishing everybody else efforts.  Our busyness somehow validated us in the minds of our peers. So we thought.  When we stopped using the word, we were free to be happy with our efforts for the day – and free to let others be comfortable with their own accomplishments.
‘The devil made me do it’ was a well-worn phrase when I was a kid.  Perhaps ‘busy’ is its new iteration.  An unintended consequence of our banishment of all things busy was that we stopped justifying our poor behaviors & choices.  As we practiced choosing better words to describe our circumstances, we noticed a steady decline in the blame game. It included saying things like “we choose to take on too much…our bad.”
And most importantly, when we quit using the word BUSY, we noticed that others did the same. It was refreshing, for all of the aforementioned reasons.
Busy, it would seem, is a self-fulfilling prophecy.  The more we said it – the more we felt it.  The more we felt – the more we acted like it.  The more we acted like it – (well, you know the rest).  Guess what?  When we quit saying it, we reversed SOME (not all) of the craziness.
Exit Paul.

Friday, April 11, 2014

Commit two "shoulds" to the circular file...and watch your lupus anxiety melt away!

I have a confession to make. Those tasks I blogged about a few weeks ago, the ones that I was going to tackle with fervor once my prednisone kicked in? Well, they have yet to be tackled. That's right. The sewing projects that I was going to get right on are still untouched, and the pillbags desperately awaiting QC are still, well, waiting to be QC'ed. And guess what? Life has gone on! Believe it or not, the world has not stopped spinning, but most importantly, my world has not collapsed, despite the fact that my "must do's" are still "to-do's." 

No one in the Gorman household has suffered greatly because a couple of coats are still missing their buttons. And my pillbag business hasn't come to a screeching halt because every last Pillbag hasn't been checked. Come to find out those "must's" that were weighing on me while I was out of commission weren't that pressing to begin with. While I wish I could have told myself that in the midst of my joint pain, the best self-talk I can offer is to apply the wisdom I've gained to today's "shoulds". 

So I'm going to pick two "shoulds" - two things that I've been beating myself up about because they haven't been accomplished - and I'm just going to let 'em go. And I challenge you to do the same. 

Just tell yourself that once and for all - it's okay to put these two things off. Remind yourself that the world isn't going to come to an end if they don't happen. And convince yourself that in three months, you're really not going to care if those tasks were completed or not. It's not that you can't ever get to these two things. It's that you can't berate yourself or lose sleep over or make yourself sick for not doing them. There's a fine line between not doing something and giving yourself permission to not do it. I'm asking you to make that emotional commitment to say those two "shoulds" are "shoulds" no longer. Put them in the "Maybe if I get around to it" category. Or the "Lazy Saturday with coffee in hand" file. But wherever you catalogue those "shoulds", make sure you mark them off your pressing and nerve wracking list of "to dos"...for good. 

My latest "shoulds" that are getting the boot? 

1) Organizing the box of warranties and manuals that I inherited from the contractor once we moved back into our house: The box is huge, and daunting, and should be tended to. But you know what? The stuff is contained. The manuals are all there. And I've even been able to find the ones I've looked for (victory!) So they really don't need to be organized anytime soon. 

Item #1, off the list. 

2) Coming up with a social media business strategy: Even writing those words makes me break out in hives, so I know my psyche is going to appreciate this little item being stricken from my official to-do list. While I know that social media is the way of the future, I'm just not ready to commit to a stringent schedule of posting to FB, Twitter, LinkedIn, Pinterest, Instagram, et al for business purposes. I've tried - but my attempt to tell myself "I should be posting" just forces it to the bottom of the list. So I'm going to permanently take it off the list of things to do - and just wing it. By no means will this preclude me from posting. In fact, I wouldn't be surprised if my new found freedom isn't more inspiring! 

So now you know - if I blog about doing the above mentioned tasks, or about planning to do them, or about thinking about planning to do them, I expect to hear from you!

Wednesday, April 9, 2014

Despite Lupus' 2014 Spring Speaking Tour - Lupus Foundation of New England

April has arrived, and I'm looking forward to kicking off my Spring Speaking Tour! I'm going to be busy, but my travel plans have been carefully (read: painstakingly) arranged to make sure I don't overdo. I wouldn't have a very compelling story to tell at each event if I made myself sick trying to get there!

My first stop is Cambridge, Massachusetts, where I'm thrilled to be working with the Lupus Foundation of New England for the first time. I'll be participating in their annual Taking Charge & Living Well with Lupus Symposium and Annual Meeting. Looking forward to it!

Details are below. Those of you in the Northeast - I hope to see you there!

Sunday, April 27, 2014
8:30 am-3:00pm
Royal Sonesta Hotel
Cambridge, MA 02142

Monday, April 7, 2014

A pitch for 3-month supply medications. The numbers don't lie!

Are you ready to hear some astounding prescription drug figures? 

I recently started CellCept again, after an almost seven-year hiatus. (After several years of plaquenil, prednisone, and a couple of pregnancies, it's time for another round of my favorite mycophenalate medication.) When I was last on the drug, from 2004-2007, I recall the medication being quite expensive, particularly because there was no generic available.  Thankfully, my insurance covered the brand-named drug completely, so we were relatively unaffected by the high cost, which at the time was approximately $800 for one month's supply of 2000mg/day. God bless health insurance.

Fast forward to today, and that's not exactly the case. While I have great insurance, it's one that has a prescription benefit cap. On this current plan, I have $1500 to spend on meds a year. For those familiar with prescription drug costs--that pays for a lot of prednisone, but not very much cellcept.

So when my doctor prescribed cellcept, I knew I was going to have to crunch some numbers to figure how this med was going to fit into our budget. First thing I did was to sign on for the generic form of the drug. Second thing was to call my insurance company. And here's what I discovered: 

At my current dosage (1000 mg), I pay a $10 co-pay, and the insurance company covers the cost of the generic medicine which is $322/month. 
After about 5 months, my drug benefit ($1500) will run out, maybe even faster since I'm still filling other prescriptions. 
Once that benefit is exhausted, the cost of the generic medication will be a $10 co-pay, plus $401/month, all of which I'll need to cover. Yikes. 
What's more, by that point, I'll be on 1500 mg, if not 2000 mg, so it will be even more than that. I opted not to price that out because of the good news I heard below: 

If I mail-order a 3-month supply of generic Cellcept at a time, the cost to me is a $20 co-pay, plus $84.  $84! And that's assuming an increased dosage of 1500 mg/day. Woohoo! 

What's more, I found out that my beloved local pharmacy participates in what my insurance company calls the Retail 90 Network program. As long as I obtain a 3-month prescription from my doctor, I can still go to my own pharmacy to have prescription filled, and see the friendly, smiling  faces of my pharmacists.  

I've always known ordering my medicine in bulk was cheaper, but I didn't realize how much cheaper. Believe me, I wish I didn't have to pay a cent over my co-pays. But discovering this massive savings has been a big "win" in the patient category. Bring on the Cellcept, and let it work its magic! 

Friday, April 4, 2014

Pillfold Lifestyle: The Trocadero

Combined with a dash of color and a pair of fun kitten heels, the Pillfold Trocadero is the perfect complement to a stylish, on-the-go lifestyle! This is just how the Pillbags are intended to function - eliminate the embarrassment and drudgery of taking pills by adding a "dose of style" to your daily routine!

Wednesday, April 2, 2014

Lupus Fundraiser in Alexandria, VA - April 8th. Come out for best pizza ever!

Don't miss the upcoming LFA DMV Fundraiser on Tuesday, April 8th from 4-9:30pm at the delicious Pizzaiolo Restaurant in Cameron Station. Unfortunately, I can't attend this year's fundraiser, but last year, I sold a couple of books, a handful of pillbags, and walked out with one of the best pizzas I've ever had. To say that a few slices were missing by the time I got home wouldn't be a complete lie! 

Details are below - be sure to say hello to Janice and Carla if you go! 


(Pizzaiolo-Shirlington will also be donating 10% of sales)

4:00 - 9:30pm 
4906 Brenman Park Drive
Alexandria, VA  22304