Thursday, October 22, 2015

Welcome back, Pillbags!

After a week or two of some seriously low inventory on the Pillfold website, (no Sebastian OR Bordeaux? I mean, come on!), I'm happy to announce that the shelves have been restocked and all of your favorites pillfold patterns are now available.

I've even brought back limited quantities of the Winchester and the Hastings. They were crowd favorites in the spring, but sold out almost immediately. They're back, but not for long. Don't miss your chance to get a cute little striped number, or a harlequin black and white pillbag today!

And the Fabulupus Pillfolds are now ready to ship! Check out the newest pillbag on the block - inspired by and intended for lupus patients around the world! And take advantage of the Fabulupus Combo, and save 50% off the cover price of the book, "Fabulupus"!

Monday, October 19, 2015

Little changes, big difference: making lupus better!

Over the summer, I decided to make three itty bitty changes to my daily routine, in an attempt to make the Lupus part of my life run a little more smoothly. I was surprised at what a positive impact they had, and how much they improved my outlook on lupus life. Thus, I've kept up the changes through the fall.

Here are the three things I did:

1) Asked my babysitters to come 30 minutes earlier.

To accommodate my daily nap while my girls are out of school in the summer, we hire babysitters to come several afternoons a week. And for as long as I've hired summer sitters, I've always asked them to arrive at 2pm, to cover my nap starting at 2pm. That's just been the drill.

But this past summer, I moved up their start time to 1:30pm. I always felt tired between 1:30-2pm, in anticipation of my 2pm nap. Why not try avoiding that 30 minutes of fatigue by asking the sitters to come earlier, thus enabling me to start my nap earlier?

I never knew what a difference a half an hour could make!

Gone was the crankiness that habitually took place between 1:30-2pm, as I anxiously, though impatiently, waited for 2pm to arrive.

Gone were the struggles with the girls, incited by fatigue.

Gone were the constant yawns and scratchy eyes.

Gone were the days where a 2pm nap turned into 2:30pm, or even worse 3pm.

With this little change, I successfully eliminated a window of time that I never knew I dreaded so much. No longer did I  experience that mental exhaustion and physical discomfort that always takes place when I wait too long to take a nap. I avoided personal feelings of guilt,  embarrassment, resentmnent, and regret, simply because I didn't give myself the opportunity to slip into those fatigued-induced emotions.

2) I switched the time of day I took my iron pill.

One recurring symptom I have with lupus is anemia. Year-round, I'm either anemic, borderline anemic, taking a 24 hour urine to see if I am anemic, or coming off iron because I'm no longer anemic.

So when I started an iron pill earlier this year, it was nothing new. What was shocking was the way this particular pill upset my stomach. (I've been on iron before, but this one was different.) I quickly realized it HAD to be taken with food,  which eliminated my morning and evening doses, since Cellcept requires an empty stomach. So I started taking it at lunch time, which made me a 3 x day pill popper.

And boy, was that a pain.

I've had to take pills 3 (and even 4) times a day before, but I don't like it. It's disruptive, it's one more thing to remember, and I don't like having to coordinate my lunchtime meal with a pill.

But I did it. And hated it. I started resenting the fact that I was anemic, which means I started blaming lupus, and eventually blaming my body, and that's a very slippery slope.

So I made a small change, before my attitude toward lupus took a major turn. I  decided to try taking my iron pill in the morning - with the Cellcept, and everything else I take. I figured I only had to wait an hour before eating, and I was hopeful that the nausea from the pill wouldn't have time to set in (unlike the time I took it at night, and got sick the next morning.)

It worked! I felt zero nausea, it didn't conflict with any of my other morning pills, and I no longer had to fit in that orphan pill at noon time. Instant relief, and immediate morale booster. Just in time.

(And for all of you who have requested a 3 x day Pillfold - I felt your pain, and I'm working on it!)

3) During every nap, turn on a fan, no matter where I am, no matter what the fan.

This move has truly changed my life. I've always known the value of white noise, but I was always reluctant, and somehow embarrassed, to run a fan during my nap, particularly when I was traveling.

But all that changed with a trip to my in-laws' shore house this summer. They suggested I turn up the window air conditioner in my room during my nap, and immediately, my naps improved in quality. The noise truly blocked out all other disruptions, and I slept like a baby.

Thus, I've carried over the habit, at home, in hotels, and even when I'm a guest at other people's houses (although I try nit to over step my bounds as a grateful guest!) If there's a bathroom fan, I turn it on. It there's a Fan function on the air conditioner, I opt for that. I do whatever I can do to block out the noise, in order to get the most productive nap I can.

It has made a HUGE difference, and it even makes for a more pleasant environment for my family while I'm napping. The fan allows them a lot more leeway when it comes to being quiet during my nap. I'm still extremely thankful when people are considerate of my sleep, but the white noise does take the pressure off.

So there you go. As insignificant as they may seem, these little changes clearly made my life with lupus easier. And that's the goal. If life with lupus is going to work, we have to be strategic how to make lupus interfere the least, while benefitting us, the patient, the most!

Friday, October 16, 2015

The Serenity prayer meets Type A lupus chick

What does this lupus patient recite as she's lying in bed, thinking of all the things she didn't get done that day?

Grant me the serenity 
To accept the things I cannot change
(Like I need 8-9 hours of sleep at night; I'm never going to get everything done I want to before 10pm; I'm going to be mad about having to leave things unfinished) 

The courage to change the things I can 
(Resisting the urge to check email after 9:30pm; writing a more reasonable after-the-kids-go-to-bed-to-do list; learning to just stop in the middle of something)

And the wisdom to know the difference
(My driven, finish-at-all-costs instinct isn't going to change, but my willingness to put stuff off until the morning can, realizing that my health and wellness are depending on it!) 

Here's to getting the rest we need, readjusting our expectations, and living well, despite lupus!

Wednesday, October 14, 2015

#butitsnotmylife : New Lupus video. Check it out!

I'm happy to share the newest lupus video on the block, brought to you by the folks at #butitsnotmylife!

#butitsnotmylife is a campaign dedicated to creating awareness for chronic autoimmune diseases, through a positive mindset. It's designed to bring encouragement to anyone going through a daily fight, reminding them that their situation is not their life.

100% agreed!

(As an aside, I had the pleasure of meeting and working with Shanelle Gabriel, one of the young ladies featured in the video, at the GSK blogger summit I attended in May. She is a dynamite person - and such a great example of how you can still contribute to this world in a way that makes you feel fulfilled, despite a chronic illness. She's doing what she loves, making a difference, and reaching her goals. I'd say she's living well, despite lupus! Check out her website here.)

Monday, October 12, 2015

LFA DMV Summit: Oct 24th, 2015, and the unveiling of the new Pillfold Fabulupus!

Once again, I'm looking forward to setting up shop at the upcoming LFA DMV summit, on Saturday, October 24th This year's event will be held at Johns Hopkins School of Medicine, in the Turner Auditorium. The line-up of speakers for this year's summit is better than ever, and it's sure to be a comprehensive, educational event. I'm guaranteed to learn something new!

Speaking of new - have you seen our brand, spanking new lupus-inspired pillbag, the Pillfold Fabulupus?!?

The authors of "Fabulupus" and I are thrilled to bring you this one-of-a-kind pillbag. The custom-designed fabric features rows of petite butterflies in none other than lupus' signature color, purple!

What a great way to celebrate lupus and donate to a cause, since 5% of every pillbag purchase goes to lupus charity.

Get your purple on with a Pillfold Fabulupus™ today! Click here to place your Pillfold Fabulupus ™ pre-order.

But first - check out our special Fabulupus Combo™ - where you can purchase the Pillfold Fabulupus™ and a copy of "Fabulupus: How to be young, successful, and Fabulous (with Lupus)", and save 50% off the cover price of the book.

An amazing deal too FABULOUS to pass up!

Below are more details for the upcoming summit. My fingers are crossed that my Pillfold Fabulupus™ shipment will be in by then. But I'll definitely have my other pillbags, as well as copies of "Fabulupus." Be sure to stop by my table, browse the product selection, and say hi!

Click here to learn more, and purchase your ticket. Only $15, and lunch is included!

Friday, October 9, 2015

Selena Gomez blazing the trail for lupus conversation!

Thank you, Selena Gomez, for speaking out about your lupus experience!

You can read about Ms. Gomez' recent lupus treatment here. It was so brave of her to share part of her story. I hope it empowers others to speak up about their disease, ask for help when they need it, and take the time necessary to allow their bodies to heal and recover.

Lupus, as we all know, is no joke. But we can still be successful, accomplished individuals, as evidenced by Ms. Gomez, as long as we put our health and wellness first.

Sometimes that includes putting plans on hold, or allowing ourselves to take detours from the life we had in mind. As hard as those sacrifices and accommodations may be, I say carving out a life, with lupus in tow, is better than being left with no quality of life at all!!

Wednesday, October 7, 2015

LFA confirms Plaquenil pricing return to normal. And not a moment too soon!

I'm happy to share the most recent press release from the Lupus Foundation of America on the status of the price hike/shortage of the generic form of Plaquenil (Hydroxychlorquine).

Good news is that they're confirming what my personal experience has been - that prices are returning to normal, because the four manufacturers of the generic are no longer reporting shortages. Woohoo!!!!

Here's the snippet of the press release below - and you can read the whole article here. If your prices haven't yet normalized, the LFA has also included some tips on dealing with the extra cost. You can also read about my price shopping methods here! 


Currently, there is one brand name drug manufacturer producing Plaquenil® and four generic drug manufacturers that are producing hydroxychloroquine. All four generic drug manufacturers are no longer reporting a shortage and are meeting demand. However, we have had several reports from people who are unable to pay the high cost of the drug. As a result, some individuals are no longer taking it or rationing their medication. We urge all people with lupus to speak with their physician if they are having difficulty accessing the drug.

“Hydroxychloroquine is the mainstay of lupus therapy,” according to Michelle Petri, MD, MPH. “It prevents half of lupus flares, reduces renal and CNS lupus, reduces blood clots in half, reduces future seizures, diabetes and LDL cholesterol, and improves survival. I call it ‘lupus health insurance.’”


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!