Wednesday, April 27, 2016

Lupus help: Ask and you shall receive. (The hard part is asking!)

When it came to asking for help with lupus, I used to be quite shy (read: stubborn) about it. I didn't like that there were things I could no longer do for myself. And I really struggled with the emerging need for "accommodation" - be it at work, home, or in my personal life. The sudden reliance on others, the loss of independence, and the fact that I needed special treatment made me feel puny, powerless, and resentful.

But...I learned to work through those feelings. I realized that by making small changes to my lifestyle,
and in requesting help and accommodation from others, I'm enabling myself to successfully manage my disease.  This realization was so important that I dedicated an entire chapter to the subject of asking for and accepting help in my book, Despite Lupus.

I've talked about accepting help on this blog before - and you can read about some of those posts here. Over time, it's become much easier to reach out for help - mostly because the more you do it, the more often you experience the healthy benefits of doing so. But also because people are more obliging than I ever thought they would be.

I'm often reminded of this when I travel, because I consistently ask for accommodations, specifically at hotels. I've posted about traveling with lupus before here, and I've mentioned how helpful my husband is when it comes to arranging our travel around my daily nap. But sometimes, flight schedules and check-out times don't mesh with my sleep needs. And when they don't, I muster up the courage to ask for an accommodation.

Asking for an early check-in or an extended stay used to be a hand-wringing, sweat-inducing experience for me. It was a task that I preferred to pawn off on my husband, or my sister, if possible. But today, I know the worst the front desk can say is "No", and the best is that they say "Absolutely." Not only do I have the chance to fit in my nap, and manage my disease the way I would at home, I have the opportunity to teach someone about life with lupus. By asking, I'm informing. I'm creating awareness about the disease, and perhaps I'm paving the way for the next lupite to ask for, and receive, help in the future. Maybe we can all #makelupusfamous, one "ask" at a time!

I've had a string of smooth and successful hotel nap accommodations recently - and I thought I'd share a few tips on how I typically maneuver the "ask":

1) Plan ahead.

Once your travel arrangements have been made, you can determine if and when you will need extra time in the hotel room to accommodate additional rest. This could mean requesting to get into a room earlier than the standard check in time, or asking for extra time beyond an extended check out time. In either case, you want to set yourself up for success by referring to the need early and often. Mention the request after you book the room, but do so gently, and be sure not to expect any guarantees at this point. If you're booking more than a day in advance, it's unlikely that a hotel can promise any sort of special accommodation. (And if they do, be skeptical. It may be a new attendant at the desk!) But at least a note can be included in your booking, and you've set the stage.

If you're requesting early check in - it's imperative to call the morning of the booking, so that the cleaning staff can plan accordingly. It may also be advantageous to call on the way from the airport to the hotel...just to remind the staff that you're arriving soon.  Most hotels can move things around so that upon check-in, YOUR room is one that was cleaned first.

2) Ask with confidence, but don't make demands:

Just like with anything - kindness counts. Once you've arrived at the hotel, be courteous throughout your stay. No one likes to grant special privileges to the rude, disruptive guest! A day before you need the special accommodation, such as a late, late check out, approach (don't call) the front desk. (I used to detest the in-person thing, but it really does help!) Be courteous, say hello, and mention that you have a question. State that you have a disease called systemic lupus (I think the systemic part gives it a little gravitas), and casually ask if the desk clerk know what that is. Whether or not you get affirmation, continue confidently by saying that it's a disease that requires you to take a nap every afternoon. Ask if there's any way that you can have your room for an extra hour or two so that you can rest. Express your appreciation for any accommodation that can be made.

When you make this "Day-before" request, you're really just setting the stage again. Usually, the response is that "every effort will be made to accommodate your request", but that the best thing is for you to call down the next morning between 9-10am, and they'll see what they can do for you. Thank them for their time, and then be sure to call down between 9-10am the next morning.

The next morning, you can either call, or go down in person, depending on whether you'll need to make your pitch to another desk clerk.

3) Make accommodations yourself

Once you've made the initial request, and the hotel staff responds, or starts checking the computer, you can add detail. Mention that you usually nap from 2-4pm, but that you can make it work earlier if necessary. Mention that any extra time will really make a huge difference, and any place to rest quietly will work. You're willing to work with whatever they can get you.

If you're mentioning a request upon check in, be prepared to change rooms, or locations within the hotel in order to have the best chance at getting the accommodation.

4) Offer a Plan B

Let's say your room isn't available. Offer up another solution. Maybe there's another space you could use. Maybe they have a spa area where you can hang out for a nominal fee. Maybe you can just rest poolside, still having access to the hotel. Even if they just hold your bags while you can get some shut eye in a quiet lounge area, you've made your life easier.

5) Work out logistics

Hopefully, the answer is one that leaves you with a suitable place to rest. If the clerk confirms you can have your room until X o'clock, be sure to thank them accordingly. Explain how helpful this will be, and assure them that you will be out by that time. Now make sure you figure out the details - whether or not the room key will work beyond normal check out time, what to do regarding check out, etc. Ask if there's anyone else you'll need to inform. And whatever you do, use the room as you promised you would. Don't abuse the privilege.

***

On Friday, I'll share pictures of another napping accommodation that I requested before a recent speaking engagement. It was heavenly, and will inspire us all to keep asking, in the quest for the most perfect napping spot ever!



Wednesday, April 20, 2016

Project Runway All Star to attend upcoming lupus event. Want to join us?

Just announced!!! Korto Momolu of Project Runway fame will attend, and her designs will be gracing the catwalk of the upcoming lupus gala in Maryland on May 13th!

In addition to dinner, dancing, and short film premier at the upcoming LUPUS: Life's Untapped Potential in US gala, the first ever of its kind, there will also be a fashion show. None other than Korto Momolu will be there, showing off her brand new spring collection. How exciting!

I am excited to attend. After all, I have to get a first peek at my lupus interview included in the movie short! (View the trailer here.)

You can read more about the designer, whose name is pronounced Cut-Toe Mo-Mo-Lu, here. Interested in attending the event? Click here!



Third-Party Fundraiser for the Lupus Foundation of America, DC/MD/VA Chapter, Inc.
Gala shall include the premiere of the short film/documentary entitled "Awake + Risen," dinner, music and fashion show.  Special guest designer of Project Runway/Project Runway All-Stars Fame will be Korto Momolu will be showing items from her latest collection! Event dress code is formal.  All proceeds will be donated to the Lupus Foundation of America, DC/MD/VA Chapter, Inc.
WHEN
WHERE
Silver Spring Civic Center - 1 Veterans Place, Silver Spring, MD 20910

Wednesday, April 13, 2016

A spoonful of sympathy makes the medicine go down. Or so says the Johns Hopkins Health Review.


"Nurses tell us all the time that if the doctor goes in and holds the patient's hand and asks them how they are, the nurse will have fewer complaints from the patient."  Allan Belzberg, clinical director of Neurosurgery Pain Research Institute and associate professor of neurological surgery at Johns Hopkins

I ran across this quote in an article titled, "Pain Pain Go Away", in one of my favorite semi-annual publications - the Johns Hopkins Health Review. This was from last year's spring/summer issue, and I'll be sharing more tidbits from the most recent fall/winter issue over the coming weeks. I'm always blown away at the number of doctors and scientists committed to changing the world of medicine, health and wellness through their studies, research and development.

While the article itself is fascinating, this quote encapsulates what I have found to be true in my dealings with all of my doctors. In particular, while Dr. S., my rheumatologist, isn't literally a hand holder, he demonstrated just this past appointment how much it means to have a doctor who truly listens and cares about their patient.

As many of you have experienced and subsequently commented about on this blog, the price hike of the generic plaquenil medication continues to be a major hassle for those of us taking the medication. I've written about my prescription-filling travails here, and here. And I've always been very open about the issue with my rheumatologist, not only about this recent hike of plaquenil, but also the price of cellcept, as well as lovenox, a daily blood thinner that I had to administer during one of my pregnancies that ran $1000/month out of pocket. I don't mention these high prices to him in an effort to complain, or nag. Nor do I expect that he can magically reduce the cost of a drug, or make badgering phone calls to the drug company. Rather, I mention it in an attempt to keep him in the loop. So that he knows that one of the medicines he's prescribing has suddenly become a financial burden for me to start or continue taking.

Last year, I mentioned the plaquenil price increase to him once, and he said he was aware of the issue. But he kind of just shrugged his shoulders because, as I knew, there was very little to be done about it. Then, several months later, the plaquenil price returned to normal for me. I mentioned it again, just to let him know that the price had fallen, and we laughed about the fact that my little old plaquenil had been more expensive than big honking cellcept.

Fast forward to last month, and I went to fill my plaquenil, and the price hike had hit me again. It was right back up to where it was before, at more than $485 for a three-month supply. (With insurance, it's over $550 at Costco, and over $700 at Rite Aid - go figure!) So of course, I mentioned it to him again, just to keep him in the loop. He was aghast that it was still so high. We spent 10 minutes, looking up different sites, checking the price here and there, and confirming the why's and how's of the price hike.

In the end, he suggested two things - 1) he would write me a new prescription for plaquenil, one that I could shop around to different mail-order and/or local pharmacies to try and get the best deal, without having to transfer my current prescription, and 2) we could reduce my plaquenil from 400mg/day to alternating 400mg/200mg every other day. I was EXTREMELY thankful for the time he spent, the sympathy he showed, and the workarounds he created. While it wasn't an actual hand-holding moment, he'd definitely lent a sympathetic ear. One that made the whole price hike that much easier to swallow. (You knew that was coming.)

As a footnote, I shopped the new prescription around, and found a rock bottom deal at Wal Mart, for just $80/month. For a three-month supply, that makes it $240, which is more than a $245 savings. That is real money. And all thanks to Dr. S!

Note: Please check with your doctor before making any changes to your medication regimen.


Monday, April 11, 2016

LFA "Real Life with Lupus" Study: A chance to share your views on quality of life!

The LFA has created an opportunity for patients to share their thoughts on what life with lupus is REALLY like, through a current research study. While Phase I is no longer accepting participants, Phase II will be up and running in the near future. Thus, I wanted to share the good news about the LFA's valiant efforts to enable healthcare providers to better understand how the disease truly affects its patients.  

Here's the link for the study, and details from the LFA's website are below.

The Lupus Foundation of America, assisted by Evidera, a health outcomes research organization, is working to create a future tool that people with lupus can use to describe how their disease is affecting them. This tool may help healthcare providers better understand symptoms that are important to you. To build this tool we are conducting a research study to gain a better understanding of how people with lupus experience this disease.


How will this study take place? (NOTE: THIS PHASE IS CURRENTLY CLOSED, BUT STAY TUNED FOR PHASE II!

You will have one of two opportunities to participate.
  • The first opportunity consists of a 45–60 minute telephone interview. You will be asked to discuss your experience with lupus, lupus symptoms, and the impact it has on your daily life.
  • The second opportunity consists of a 60–90 minute in-person or telephone interview. In this interview, you will be asked to provide feedback on the developing tool or questionnaire.
The interview does not involve the use of any drugs or medical interventions.
Details about the interview process will be given to those who are eligible for the study and agree to participate.

Thursday, April 7, 2016

Finding time to manage lupus: Just put down what you're doing - and start.

I've been trying to write a series of blog posts for weeks. Granted, I threw a week's vacation into the middle of that period of time. But my holiday aside, I just haven't carved out time to sit and type.

It's not that I need help clearing my head. Oh no. I have health topics to keep me writing for months. I actually think it's a distraction of clearing my counters. Every morning after dropping the girls off at school (Deirdre at 8, and Bernadette at 9), I tell myself that I'm going to walk in the house, march right upstairs, grab my computer, and start writing for an hour. I even tried bringing my laptop down to the kitchen table each morning, so that it's ready and waiting for me when I come home. But most mornings, I don't get beyond the need to tidy up.

First, I tackle the breakfast dishes. Next it's the laundry. Then it's filling pillbag orders, qc'ing new inventory, paying bills, or anything else that's sitting on or near my kitchen counters. Granted, I am a bit of a stickler for neatness, so I work more efficiently and think more clearly when my work space (which turns out to be my house) is neat and tidy.

But here's the deal. There will ALWAYS be something that I could tidy up/finish up/complete before sitting down to write. So if I'm going to find time, I'm going to have to make time. And that means I'm going to have to leave a few things unfinished.

I realized how applicable this is to my life with lupus when I was doing dishes this morning, I kept saying to myself, "Why don't you just turn off the water and go upstairs to write? Why don't you just treat your writing sessions like you do your nap? Just stop what you're doing, Sara, and go do it."

And so I did.

And here's the blog post to prove it, while my breakfast dishes sit in the sink.

It wasn't easy to drop that sponge, and walk away from the mess. It wasn't easy to pass by the new pillbag fabric swatches sitting on my counter, or ignore the checks that I need to write.

But I have the willpower to choose how I spend my time. I just have to exercise it.

That's why I feel the best strategy I have for managing lupus is my ability to prioritize my health.

A mid-day nap has and never will seem practical. Believe me, it's not that I don't have 20 other things I'd rather do each afternoon instead of nap. The phone doesn't stop ringing, and the emails don't stop coming. My kids still need me, and my life keeps spinning. But I force myself to stop what I'm doing every single day, and rest. I choose to put myself first, in order to function like a normal mom, a successful business owner, and a happy and healthy gal with lupus.

I know that my ability to make that one decision each day has more to do with my life-long commitment to living well than just about anything else I do. Aside from taking my medication (around which I've created an entire business to help me remember!), getting my daily rest helps keep my disease in check for the foreseeable future.

And a long and healthy future is much more important than any sink full of dishes.

While ignoring your own to-do list is never going to seem prudent, it might just be the key to a long and healthy life with lupus for you, too!

(As an aside, when I checked google to see whether willpower was one word or two, the following article popped up. It was so appropriate, I had to share!)

Tuesday, March 22, 2016

ALR and LRI Congressional Briefing: A New Action Plan for Lupus Research. Great things on the horizon!

Last Tuesday, I had the pleasure of attending a congressional briefing on Capitol Hill, something I've never done before. The event, sponsored by the Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI), proved that much is being done to increase the visibility and improve our understanding of lupus. Hooray!

Industry professionals, scientists, doctors, patients and legislators all gathered together, showing a renewed commitment to accelerating research and development for this enigmatic disease.  I was so energized when I left the event; there is so much hope for lupus!!

While the nitty gritty of the new action plan for Lupus is below, and you can read more about it here, here are a few things that got me excited about the future of lupus medicine and research:

Precision medicine: Via video, we heard from Dr. Francis Collins, Director of NIH. I loved hearing that one of the primary goals of lupus R&D today is to, upon diagnosis, project the trajectory of a patient's disease. Can you imagine being able to predict which patient will develop complications, or organ involvement, so that treatment can be given to potentially prevent organ damage or severe side effects from occurring? That's so exciting!

We also heard from Dr. Robert Carter, whose slides are seen here. He talked about the importance of pinpointing biomarkers to be able to make those precise disease determinations.

Patient certainty:  The room was filled with individuals who absolutely believe that while the prognosis for lupus has improved, it could and should be a lot better. It was exhilarating to be surrounded by so many positive, hopeful, undeterred people, several of whom were the chairs of the Congressional Lupus Caucus. Representative Ileana Ros-Lehtinen (R-FL), in particular, talked about improving the certainty for lupus patients, a word that I've never been able to associate with my disease, but sure would love to!  She said:

“Continuing to advance research is a critical goal of the Congressional Lupus Caucus,” said Caucus co-chair Representative Ileana Ros-Lehtinen (R-FL). “The new Action Plan represents a path lined with possibilities for those living with lupus, including my step-daughter. Through her experiences, our family knows how hard living with lupus can be, so I am committed to helping improve the quality of life for those suffering from this challenging disease.”


Training for a cure: Dr. Stephen Katz, Direction of NIAMS, gave a great overview of where the future of lupus research is headed. He said the job today is to train the scientists of the next 20 years, so that we can get closer to a cure. We've all heard that concept before, but when he quantified the years, Deirdre and Bernadette immediately came to mind. In twenty years, they'll be the age I was at the time of my diagnosis. Thinking that more funding today could bring a faster diagnosis, better treatment, and possibly a cure for my little gals, should they need them, makes me so hopeful!!

***

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), on behalf of the National Institutes of Health (NIH), recently released the NIH Action Plan for Lupus Research – a new research roadmap on the prototypical autoimmune disease. This comprehensive strategy was developed in response to a request from the Congressional Lupus Caucus and builds upon decades of NIH research efforts, yielding a wealth of new information toward improving our understanding of lupus. Join us to learn about the priority areas that NIH has identified and what it means for patients and scientists. Moderated by Margaret G. Dowd, President and CEO of the Lupus Research Institute.





Thursday, March 17, 2016

LFA DMV Annual DC Summit: Saturday, March 19th. Come say hi during my panel discussion!!


Looking forward to participating in this Saturday's 2016 DC Lupus Summit at GW University! 

The LFA DMV once again has a great line up of speakers planned for the day of lupus education and discussion.  I'll be there for the day, setting up shop with my Pillbags and books, as well as joining Dr. Vicki Shanmugam as a patient panelist during one of the afternoon break out sessions. A similar panel discussion took place at the Maryland Summit last fall, and I'm looking forward to another candid, lively discussion, especially from the crowd!

Below is the agenda for the event. I hope to see you there!

Click here to register.  The LFA DMV has worked hard to make this event free to all who attend, and you can reserve a box lunch for an additional fee. 


20th Annual Washington, DC Lupus Summit
Saturday, March 19th, 2016
8:30 a.m. - 3:30 p.m.
George Washington University, Marvin Center
Registration begins at 8:30 a.m.

Opening Plenary: Benlysta, Future Treatments and Clinical Trials
Christopher Collins, M.D. 
Warm Up With Yoga
Lorena Lues, CHHC, RTY-200, CPRP, CTRS
Lupus 101: How to Live Longer and Better With Lupus
Donald Thomas, M.D., FACP, FACR, RhMSUS, CCD
Drawing for the Giveaway - The Lupus Encyclopedia
Lunch
Breakout I
Prevention of Heart Attacks and Strokes
Tara Dall, M.D.
Breakout II
Men and Lupus
Howard Hauptman, M.D.
Breakout I
Eyes, Lupus and Plaquenil
Jonathan Solomon, M.D.
Breakout II
Lupus and the Skin
Benjamin Lockshin, M.D., FAAD
Breakout I
Patient Perspective Panel
Moderator: Vicki Shanmugam, M.D.
Sara Gorman, Lorena Lues, Kristine Prentice, Jamarr Shareef, Amey Upton
Breakout II
Infections and Lupus
Rodolfo Curiel, M.D.