Thursday, October 1, 2015

Time well spent: blogging about one very special gal!

I had two things to do last night. One - write a blog post. Two - write a letter to Deirdre's 1st grade class, explaining why she is so special to us. She was chosen as Student of the Week, and the letter is one of the special honors she receives. I think she also gets to sit in a pink chair while the letter is being read...which is no doubt WAY cooler than the letter itself!

But as I tackled the letter first, I decided to let it double as a blog post. It's not often that we have the chance to tell Deirdre (and the world!) just how much we love her and why. We were invited to include a little story about her, and share any other tidbits about what makes her one of God's children. This gal truly is one of a kind, and I hope we take the opportunity to declare our love for her in the written word more often! (Although our daily lunch notes count for something!)


Dear First Grade class -
Deirdre Gorman is a very special young lady. We were blessed with her arrival on October 8th, 2008, which means in just one short week, she will turn 7 years old. How fast that went, and what a beautiful, kind, considerate person she’s become. We are so proud to be her parents!

The day we brought Deirdre home from the hospital was unforgettable. She was two days old, and was just getting used to her name – Deirdre Colina Gorman. By now, you all know her name is pronounced Deer-drah, but in the hospital, we helped the nurses pronounce her name by saying, “Deer, as in Doe a deer”. We must have said that 30 times in the two days we were in the hospital. So as we left the hospital, with Deirdre in the car for the very first time, we pulled onto 495, the busiest road in our area, and what do we see but a deer bounding along the side of the road. There are never deer on the side of 495!!! We took that as one of the first signs from God that Deirdre was a special gift, and that he would be watching over her from that day forward, just as he’s watching over each one of you.
Deirdre has a wonderful laugh, and a smile that makes everyone else want to smile with her. She is a loving big sister, and treats her pug dog Darwin with extra special care. She builds really cool lego houses, enjoys doing crazy flips on the trampoline, and loves to make new friends. She is a leader – and leads by making sure everyone is included in the fun.
We love Deirdre very much, and are so happy that she is Student of the Week!
Have a great day!
Mr. and Mrs. Gorman


If you want to know more about how much of blessing (and miracle) Deirdre really is, you can read about my lupus pregnancies here, here, here and here! It will tell you all you need to know about my pregnancies, Cellcept, and more!

Friday, September 25, 2015

Pugs, prescriptions, and companionship. A winning combination!

Yup. You're seeing this correctly. Darwin the Pug has an official Costco Pharmacy Membership card. Has he arrived, or what? 

I've always found great value in establishing a good relationship with my pharmacy. Whether it's a last minute refill, or an issue with my insurance company, I know from experience how beneficial it can be to know my pharmacists by name, and to have them in my corner when I'm desperately in need.

But over the past couple of years,  I've had to rethink my pharmacy allegiance. With rising drug costs and changes in health coverage, I've had to say good bye to my friends at my long-time pharmacy, and instead adopted a bargain shopping mentality, one that I never thought would apply to medicine. If I'm at pharmacy x, and the price is cheaper at pharmacy y, I go there. If I can get a better deal the following month at pharmacy z, I transfer my prescriptions again. Thankfully, I haven't had to transfer too often, but I'm always open to a better price and inquire anytime I get a tip.  Almost always, the price break outweighs the hassle of transferring (which it IS a hassle, mind you.)

My price comparisons began when I re-started cellcept (a traditionally expensive, though effective drug) last year, and have continued with the most recent trevails with plaquenil.  You can read about those here and here, but I'll summarize by saying that in a year a half, I've been able to save thousands of dollars by shopping around.

I've most recently landed at the Costco pharmacy, which we currently go to for almost all of our family's drug needs, including Darwin's!

(Note that Rite Aid is still cheaper for Bernie's epi pen jr., and the vet is more convenient for Darwin's other Rx, but that could always change. If it does, I'll be on the hunt again!)

Because baby Darwin is not listed on our family's insurance (a mere oversight, I've assured him), he gets his very own, shiny new prescription card. He's not flaunting it to friends and family just yet, but he has been strutting around with his held high these days. (No doubt he'd be unbearable if he had a library card, too.)

But we let Darwin get away with a lot these days. He'll be 15 at the end of the year...and he's still going strong. Not AS strong, but still a joy to have around.

Dar had just been issued his pharmacy card when the folks at Milk Bone shared with me the results of a recent study on pups and their owner's health and wellness. Thus, it was a perfect opportunity to blog about the two together. I've written several posts about the personal lessons I've learned from my pugs before, and you can read the scientific evidence below. It's wonderful to know that dogs really can be a lupus patient's best friend!

Read the entire Milk Bone study and tips here.


“Milk-Bone Study: Doggy Routines Keep Entire Family Healthy”

According to the “Milk-Bone Human-Canine Health Study", pet parents who include their pups in family health routines lead healthier lives.

In fact, 55% of dog parents say their lives are “full of happiness and joy,” compared to 39% of non-dog parents.

51% of dog parents say they get more exercise because of their dog.

TIP #1: Turn your pups’ morning or evening walking session into a fun, impromptu workout session for the entire family, so both you and Fido will get your daily fit fix.

(Despite Lupus tip: Having a hard time finding the energy to work those aching joints? Even a nice, slow stroll to the end of the driveway with your pup will get you moving.)

1 out of 3 pet parents are concerned their dog isn't getting enough of the nutrients they need

TIP #2: Start every day with a vitamin (or medication) routine for the whole family.

(Despite Lupus tip: Think your dog needs to adhere to a good medication or vitamin regimen? So do you! Take medicine as prescribed. Don't skip doses. And don't self-medicate. Would you let your dog do that???)

Pet parents conduct “well puppy” check-ups, as they would with their child. If a dog is rubbing his eyes, or has oily spots or bumps in his fur, something could be wrong.

TIP #3: Use fun petting sessions to give your dog a quick look over for possible health ailments, like gently rubbing the bottom of his foot pads for sores.

(Despite Lupus tip: Take a moment to inventory YOUR own health and wellness while you're at it. Had a fever for too many days in a row? Are your swollen joints really not improving? Take action and call the doctor!)

57% of dog parents who also have children involve the kids in their doggy caring care routines, with most reporting that it teaches them good life habits and responsibility.

TIP #4: Your pup needs just as much attention and care as you and your children. When it’s time for your kids to brush their teeth, brush his teeth too.

(Despite Lupus tip: Could your aching, swollen joints use a break from taking care of the dog? Delegate the tasks to your kids. As the tip above states, it will benefit everyone!)

Thursday, September 17, 2015

Rock, Paper, Cocktails! 2015 - Tuesday September 29th. Hope to see you there!

I'm pleased to support the cause once again by participating in the annual Rock, Paper, Cocktails shopping benefit - this year, in a brand new location!

The event, which raises money for below-the-belt cancers, will feature a great selection of fine vendors and local artisans displaying everything from stunning jewelry pieces and beautiful artwork to fine paper/stationery and custom designed bags and accessories. I'm excited to do a little shopping myself!

A few of the featured vendors:

Walton Street Stationery & Gifts
Sara Gorman's Pillfolds :)
Queen Bee Designs
Ruth Barzel Designs
Tabibi Designs
J. Ryan Jewelry Designs
Sarah Hollander Botanicals
And many, many more! 

Details for the fun event are below, and you can buy advance tickets here.

Rock, Paper, Cocktails! 2015

Tuesday, September 29, 2015 

6:00 PM to 10:00 PM (PDT)

Washington Golf & Country Club
3017 N Glebe Rd
Arlington, VA 22207

A shopping benefit to defeat women's "below-the-belt" cancers, supporting the mission of the Inova Women's Hospital's Women In Need (W.I.N.) fund, which provides much needed support to under-served women battling gynecological cancers.

VIP Reception 6 p.m. | General Admission at 7 p.m. | First Raffle Drawing at 7:30 p.m. | Live Auction at 8:30 p.m. | Event Concludes at 10:00 p.m. 
VIP tickets $47, includes one complimentary cocktail + champagne toast to a cure.
Regular admission tickets $37, includes champagne toast to a cure.
Complimentary hors d'oeuvres and sweet treats available with ticket purchase.
Discounted cash bar with complimentary non-alcoholic beverages.
Cash, checks, and credit accepted by all vendors. 
Over a dozen local fine gift vendors will be on hand!

Monday, September 14, 2015

Quick Lupus Survey: Take 5 minutes to help lupus research. Doubles as a great lupus wellness reality check too!!

The Lupus Foundation of Florida (a former Pillbag Charity of the Month recipient) recently sent out a link to a lupus survey being conducted by a doctoral nursing student. The purpose of the survey is to gain a better understanding of the relationship between health status, uncertainty in illness, and health related quality of life in adults at least 18 years of age who have systemic lupus erythematosus (SLE). 

The questions are very easy and straight-forward, and cover both physical and emotional well-being. I took the survey, and it was a great opportunity for me to re-evaluate my lupus wellness scale. I'm doing just fine. But sometimes I forget how many work-arounds I've integrated into my daily life - things like naps, babysitters, night time sleeping strategies, help with cleaning, cooking, and the kids, just to name a few - in order to make it through the week. My family and I make it work, but this survey was a good reminder of just how many aspects of our lives are affected by lupus. Manageable, yes. Normal, maybe not so much. 

I applaud the efforts of doctoral nursing student, Pamela Coombs Delis, MSN, RN, and encourage you to participate in the study. Your responses will be anonymous and the survey will take about 10 minutes to complete. (I think you can do it in 5-7!)

For every survey completed, a $1 donation will be made to the Lupus Foundation of Florida. Here's the link below: 

Thursday, September 10, 2015

"A nap a day could save your life". I couldn't agree more!

You know that any news article that begins "It is the news that nap afficionados have been waiting for" is bound to catch my eye!

I've considered myself an expert napper for quite some time. I've been religiously taking a daily nap for the past 12 years, and have had tremendous success in managing my illness because of it.  While personal experience is incentive enough to rest my eyes, it's always nice to read about medical findings on why napping midday is such a darn good idea. 

The article, titled "A nap a day could save your life, research suggests" comes from The Telegraph, and is worth the read. I've included snippets below, but feel free to read the entire article here.


Research involving almost 400 middle-aged men and women found that those who had a nap at noon later had lower blood pressure than those who stayed awake through the day.

The findings, presented at the European Society of Cardiology annual conference in London, showed pressure was lower both when awake and later, during their night time sleep.

The small difference – of around 5 per cent – was enough to have a significant impact on rates of heart attack, researchers said.

“Two influential UK Prime Ministers were supporters of the midday nap. Winston Churchill said that we must sleep sometime between lunch and dinner while Margaret Thatcher didn’t want to be disturbed at around 3:00 pm,” he said.

“According to our study they were right because midday naps seem to lower blood pressure levels and may probably also decrease the number of required antihypertensive medications.”

Longer naps of up to an hour achieved the best results, the study found.


Here's hoping you find time this weekend for this life saving exercise. You can bet I will!

Wednesday, September 9, 2015

Possible break in Plaquenil pricing? This lupus patient is rejoicing!

I hope my recent visit to the Costco Pharmacy is a sign that the spike in plaquenil pricing is on the decline!

Just to recap how we got here: Back in February, I shared information that the LFA issued regarding a shortage of hydroxychloroquine (the generic for Plaquenil). This shortage was causing a price spike that affected many of us. It took until May for the increase to hit home for me, which you can read about here, but like so many of you who took the time to comment, it was no small increase.  My monthly prescription went from $10/month to $160/month, and that was with insurance. Yikes! My prescription is written as a 90-day supply, but it was too costly to plunk down a chunk of money like that. Instead, I opted to go with one month supplies, and utilized a GoodRx coupon to save as much I could. I was still paying almost $120/month. (You can read my glowing post about GoodRx and other drug cost saving services here.)

As I was researching the reasons behind the shortages, I discovered the following updates to the ASHP (American Society of Health-System Pharmacists) website. If you want drug shortage information - the ASHP is the place to go!

Here's what it says when you search for Plaquenil (you see below that it mentions the manufacturers of both Plaquenil and the generic Hydroxychlorquine):


Reason for the Shortage:

Concordia acquired Plaquenil tablets from Covis in April 2015.

Ranbaxy has hydroxychloroquine on shortage due to a regulatory issue.

Sandoz states the hydroxychloroquine shortage is due to increased demand.

Zydus could not provide a reason for hydroxychloroquine shortage.

West-Ward discontinued hydroxychloroquine tablets in September 2014.


Here's the direct link if you want to check out the page yourself.

Now for the good news. I just refilled my prescription - and it was only $30/month. $30!!!! Could it be? Is the tide beginning to turn? Let's hope so!

This is the first month since May that the price has been less than about $120, so you can imagine my relief when I was quoted the price. As I blogged about before, I've taken up the practice of calling and speaking directly with the pharmacist to renew, so I know how to renew (30 or 90 day), and what form of payment to use (i.e. "the good card"). So when I was quoted $30, I was thrilled!

Note: I was actually tipped off by GoodRx. When I got ready to renew the prescription, I looked on their website and it said that Walgreens could refill my plaquenil prescription for $30. At the time, my beloved Costco, (who has saved me bundles in the last few years between Cellcept and Plaquenil) still listed the renewal price of $116. So I called Walgreens, and asked how I could transfer my prescription. They explained the process (that they would call and get the prescription from Costco) but suggested that I first call Costco to confirm that their price was indeed higher. While they wanted my business, they wanted to save me the trouble if the Costco pricing was competitive. So I called Costco, and that's when I got the good news: my prescription could be refilled for the reasonable price of $30/month there, too. Woohoo!

While I should have taken advantage of the price break (which I hope is here to stay), I didn't think to refill my prescription for the full 90 days. I'm in the habit of renewing monthly to save money, so my fingers are seriously crossed that the lower pricing sticks around, and that we begin to see it across the board and around the world.

As a bit of an aside, here's an interesting article I found about why and how anti-malarials, like Plaquenil, work for lupus patients. Pretty great stuff. Let's just hope it becomes affordable again, and for good!

Thursday, September 3, 2015

Back to school = Back to blogging. Lupus style!

Where has the summer gone?!?

While I didn't intend to take the last few weeks of August off from blogging, apparently, that's exactly what I did. (And I had a blast doing it!)

But now it's September, and normalcy and routine are about to be restored. While I'm sad to say goodbye to relaxing days at the pool, or late nights with neighbors on the porch (theirs, not ours!), the start of school is always a fun and exciting time. The girls practically skip to school, and I essentially skip home so that blogging and productivity can resume. And not a moment too soon!

I have dozens of topics that I can't wait to blog about, exciting pillbag news to relay, and updates to my website that I'm looking forward to unveiling. It's certainly not idea flow that I have to fight while my kids are out of school! As any parent knows, finding a moment of uninterupted silence to accomplish anything work- related is a real challenge during the summer. But fall is arriving. Parents, start your engines!

First topic up on Despite Lupus after the holiday weekend - the price of plaquenil. I hope everyone is ready to chime in again. You can read my last plaquenil posts here and here, and be sure to take in the great comments from around the globe.

Until then, have a great holiday and we'll see you after labor day!