Friday, January 30, 2015

WEGO Health Nominations - Check out my faves!

It's time for the WEGO Health Activist Nominations! I had the honor of being nominated in the past, so I'm thrilled to support those who have been nominated this year. Here are my picks, in no particular order:

*Jenni Prokopy, – Jenni’s is THE go-to resource for all things chronic illness. There’s a blogs, a free bi-weekly e-newsletter, a forum bursting with conversation, podcasts, videos, and more. Jenni is always reinventing her site’s offerings in an effort to reach her audience. She is a constant Health Activist. I’m so glad she’s been recognized!

*Holly Bertone, Coconut's Head Survival Guide - Holly brings humor and empowerment to Breast Cancer Survivor's around the world.  She's the author of two books, president of Pink Fortitude, LLC, and she just started carrying the pillbags on her site. Go, Holly!

*Tami Neumann, Conversations in Care Radio Show, Host, Speaker, Health Advocate - I was recently introduced to Tami and her radio show, discovering that she is the ideal candidate for a Health Activist Award! I'll be joining her for a radio interview on Wednesday, Feb. 25, where we'll talk chronic illness and beyond.  Stay tuned for details on how you can listen to the interview, and in the meantime, cast your endorsement for Tami!

*Julie Flygare, REM Runner, Narcolepsy Advocate - I had the pleasure of meeting up with Julie when she was putting the finishing touches on her book, "Wide Awake and Dreaming". I was honored to be included in her acknowledgements, and I'm happy to say I knew her when! Since she's been published, she's done fabulous things for the Narcolepsy community. Her nomination is well-deserved!

Take a moment and check out the WEGO Health website today. You'll discover just how many people are out there, advocating for health issues that affect their everyday lives, just like you and me!

Wednesday, January 28, 2015

GUEST POST: Benlysta Part 1: My journey to Benlysta

Benlysta Part 1: My journey to Benlysta, by Guest Blogger Patty Richey

I am thrilled to have friend, fellow lupus patient and health blogger, Patty Richey, here to tell us about her experience with Benlysta. Most of you are familiar with Benlysta - the first FDA-approved drug for lupus in over 50 years. It's improved the lives of many lupus patients, and I think Patty would put herself in that category. I'm so happy that she's agreed to share her story!

You can read more about Patty on her own blog, Good Better Best Food, where she talks about healthy eating made simple. Her premise is great - Each recipe starts as a healthy meal, which is Good. Add one element of organic, whole grain, or locally grown or garden grown, and you've made it Better. To make it Best, incorporate several elements of organic, whole grain, locally grown or garden grown. Healthy eating can be as easy as Good Better Best.

In today's post, she's putting aside her healthy, meal-planning hat to talk about her journey with lupus, and how she came to be on Benlysta. She'll cover her treatment and results in Part II, so stay tuned. You haven't heard that last from Patty!


Sara and I have been friends for about four years, and we met via email right after my diagnosis. It turned out that she lived in the next neighborhood over from me - sometimes your angel can live right next door.  Our children now go to the same school, so we are now Mom friends and real friends along with being Lupus friends.

A while back, Sara asked me to write a guest blog spot on my experience with Benlysta, and when someone helps you put your life back together in those very dark days, you just have to say yes.

While this is a departure from my regular blog, , I felt that this was important to share for those struggling with Lupus and those that love someone with Lupus.
When thinking about this blog post on Benlysta, I really thought it was best to break it up into two parts.  To just write about my experience since starting Benlysta on January 2, 2013 would not really give readers the clear picture of my health situation that got me to this point.  No one should enter into infusions of this kind lightly or as a first line of treatment in my opinion.

So where do I begin?  I have never really been all that healthy, a cold would turn into bronchitis.  I would take Echinacea and whatever virus I would have would only get worse.  Things really changed with my health the minute I became pregnant with my son, aka the Sweet Boy, in the fall of 2005.  I had bad morning sickness, which was really all day sickness.  I was dizzy a lot and had extreme fatigue, but heck, I was pregnant. Wasn’t I supposed to be tired?  Apparently not like this.  What I now think was happening was that I had bad morning sickness on top of Lupus flares.
The Sweet Boy was born in August 2006 and the extreme fatigue continued, but I ignored it.  I was a working mom with a demanding job…but does that mean I needed to nap for over two hours on the weekend and wake up unrefreshed?  I soldiered on.

In 2008, I helped with a store opening for the company I worked for, I had walking pneumonia at the time but I would not let myself stop as there was a big event to be done.  That year also I worked both political conventions back to back for my corporate job.  I had done four conventions prior to this so I was used to the non-stop work for months leading up to the events and the twenty hour days the week of the actual presidential conventions.  After it was over, I could not seem to catch up on my rest.  I thought, this time is different, I am older, and I am not some young kid anymore who can recover in a weekend. I soldiered on.

One Saturday in March 2009, I woke up with a big lump in my right cheek that hurt a lot and I had a fever of 103.  When I could not get my fever to go down by the next day I went to the emergency room where they diagnosed me with an infected parotid gland (main salivary gland) and said that if I had waited any longer to go to the emergency room it could have been deadly.

That week I saw a so called Top Doctor ENT (ear, nose and throat specialist) who said she really didn’t know what caused this and didn’t seem too interested in helping me.  I knew I was sick, really sick and this time I could not soldier on.  I still felt like a truck had backed over me two weeks after the trip to the emergency room and just knew there was something really wrong with me.  One Thursday afternoon I got on the Johns Hopkins website and located an ENT at the main hospital in Baltimore that was also a parotid gland specialist.  I called Dr. Derek Bohene’s office and I had an appointment the next Tuesday.

Dr. Bohene and his intern walked into the room that Tuesday morning and the intern said “Do you think she has Sjogren’s disease?”  Dr. Bohene replied “Maybe, but I need to make sure it isn’t a tumor”.  Well, it wasn’t a tumor, but it was looking like Sjogren’s.  With Sjogren’s disease, your immune system starts to attack anything in your system that makes moisture.  In addition, fifty percent of people who have Sjogen’s either have lupus or rheumatoid arthritis.

That summer I was able to get one of the first appointments in the new Sjogren’s clinic at Johns Hopkins.  It’s run by Dr. Alan Baer who is the head of rheumatology.  After reviewing my blood work, family history and other symptoms, Dr. Baer determined that I had Lupus/Sjogren’s undifferentiated, which basically means that I have characteristics of both diseases but don’t fit neatly into either box.   Many people with autoimmune diseases don’t fit neatly into a medical diagnosis box.  That’s what makes these diagnoses so difficult.  My favorite saying is “You’ve seen one case of lupus…you’ve seen one case of lupus.”

Over the next couple of years Dr. Baer and I would try a lot of different things together, Plaquenil and Evoxac, I went gluten free, but I was never really better.  I mean I was a little better, but I still had crushing fatigue, joint pain and there were far too many times when I would just run out of energy and not be able to walk.  Frankly I don’t even know what a flare is because in over nine years, I never had a symptom free day to compare it to.

In November 2011, I had an appointment with Dr. Baer and he told me about a clinical trial that he was running for a Sjogren’s drug. I told him at that point I was willing to try anything, even if it meant weekly injections with something that could end up being a placebo.  I was beyond ready.

It took one full year to begin the screening process for the clinical trial.  During this time, I was getting worse.  I had done both political conventions again…back to back and really struggling through the fall.  The day I showed up for my screening exams for the trial, I was a total mess and trying not to be.  So guess what…I flunked out of the trial.  Now, Dr. Baer will say I didn’t flunk out, but basically, that day I was exhibiting too many lupus symptoms and therefore I was excluded as a candidate for the clinical trial.

I went on a lunch break and little did I know while I was eating my hospital cafeteria salad, Dr. Baer was in his office reading my file from the last 3 ½ years.  When I came back from lunch he was waiting for me, and I could tell the news was not what I wanted to hear.  While he did tell me that I was no longer a candidate for the study, he thought there was enough in my file to make the case to the insurance companies for Benlysta which was approved by the FDA in 2010 and the first lupus drug of its kind in over 50 years.

That day I gave Dr. Baer permission to send a letter to the insurance company asking for coverage for Benlysta infusions, which can run about $25,000-30,000 per year.  Within 10 days, we had approval.

I think it is important to understand how I got to the point of Benlysta infusions.  It is not something I embarked upon lightly or quickly.  Dr. Bear is a very cautious and thoughtful man and he does not push pills or new treatments.

In part 2, I will cover my actual treatments and results.  Stay tuned.  If you have any questions please either email me at or leave a comment here.  I will answer all of them.

Monday, January 26, 2015

Tackling the insurance company, one lupus issue at a time!

This past Saturday morning was supposed to look like this:

Johnny stayed home with the girls.
I went to Starbucks to blog.

But I made a fatal mistake on the way to Starbucks. I made a stop.

Trying to be efficient, I stopped to drop off some new prescriptions at my pharmacy just down the road from Starbucks. I thought it would be an easy in and out, as I wasn't going to wait for them to be filled. Because I use my trusty pillfolds, I knew I had more than a week's worth of all three prescriptions left, so I had plenty of time to pick up the filled prescriptions later in the week. I just wanted to drop and go.

But drop and go, I did not. In fact, I never made it to my sweet caramel decaf skinny latte, and my week's worth of blog posts were never written. Because while at the pharmacy, I had a run-in...with my insurance company!

Drat those insurance companies! If only the hours I've spent talking, debating, disputing, defending, and arguing with my insurance company were billable! Many of you have been there. Perhaps some of you are on hold right now, waiting to discuss yet another medical claim that you've either already paid, shouldn't be paying, or have no idea what it is. Believe me, I feel your pain.

But this insurance inquiry shouldn't have been painful. With the reset of the new year, my insurance medication cap of $1500 resets to zero. Thus, I figured I should take advantage of exhausting that cap on a three-month supply of Cellcept. (If you remember, I'd exceeded my medication cap about three months into last year, because of the high cost of the drug. I shopped around, and ended up switching  to Costco's pharmacy, where I pay a very low cash price and bypass my insurance all together. With the move to Costco, I save over $600 a month!)

But with the new year, I have $1500 to burn under my insurance, and I thought I should take advantage of it. (As an aside, I have new insurance starting Feb. 1st, which does not impose a medication cap, so I had even more reason to use my insurance for this final month.) So when I dropped off my prescriptions, I mentioned to the pharmacist that I would be using insurance this time. She said no problem, took my insurance card, entered my information, and out spit a rejection. It appeared that my insurance coverage had been terminated. What???!!!!!

Of course, I knew it hadn't been. I have documentation at home indicating that both my current insurance and my new insurance starting on Feb 1st are in good standing. But that's not what the Costco computers said.

The pharmacist was extremely accommodating, and tried several different things, including a phone call to the insurance company. With an insurance company's representative on the phone, she was able to get the computers to accept the insurance. But then there was still a question of cost. With insurance, Costco was saying I owed $120 for the three months of Cellcept, I thought I should be paying close to nothing, and my insurance company was saying over the phone that I should be paying $1085. Double what????!!!!

Thankfully, everyone on both ends of the conversation was very patient and understanding. And everyone was solution-oriented. In an effort to make it most cost-effective for me, we batted around the idea of waiting for the new insurance to kick in (this coming Sunday), or just filling one month's worth of Cellcept under the current insurance, rather than three. We also considered issuing a claim, but in the end, we were able to resolve the issue.  I WAS able to use my insurance, and I didn't have to pay thousands of dollars. I did pay more than expected, but that's okay. I now have a .01% better understanding of how my insurance works. Why does it seem to get more confusing each time I have an issue?

After more than an hour at the pharmacy counter, I was spent. I bagged Starbucks, wrote this blog post in the parking lot of the pharmacy, and headed home, WITH prescriptions in hand. After all that time, my pharmacist had plenty of time to fill them. So much for a drop and go scenario!  

Although the entanglement was definitely not how I'd planned to spend my morning, the exercise was productive. I spent about $80 less on my Cellcept than I would have had I not asked the insurance question, and even more when you account for the other two medications I filled. Financially, it was worth the time and energy. And you know? It almost always is.

I wish I could say that it doesn't pay to fight. I wish we could just file away those Explanation of Benefits without perusing them, turn a blind eye to charges we don't fully understand, or just pay those medical bills without scrutiny. But financially, we'd be losing money.

There is a HUGE benefit to reviewing those charges. If we seek to understand the bills that come in, and double check to make sure that we're not being overcharged, we're actually asserting ourselves in the face of our disease. We're empowering ourselves, educating ourselves, and perhaps saving a little dough along the way.

A girlfriend of mine recently shared the following story, reiterating just how aware we should be when it comes to our medical bills. If we're not double checking the system, who will?

She recently received a medical bill in the mail for $230, checked that her insurance had paid it, and called to explain that the bill had previously been paid by the insurance company. They struck the bill from her account, but after that call, she received that same bill not once, not twice, but FOUR additional times, each telling her that she, as the patient, was responsible for the payment. She was finally able to get the matter resolved, but it was a difficult process. But with with $230 on the line, she knew it was worth it.

So keep on reviewing those bills, checking those charges, and making sure you're being billed appropriately. And for those of you with a call pending to your insurance company, may the force be with you!

Wednesday, January 21, 2015

"There are decades where nothing happens;

and there are weeks where decades happen."

                         ---Vladimir Ilich Lenin

My husband came across this quote recently in an article, in which the author was discussing the idea of adapting to different situations. Upon reading Lenin's words, I immediately thought of the times since I've been diagnosed with lupus, where in just a short period of time, I've felt like I've aged a lifetime. Not just physically, but mentally, too. Weeks where I've come to a whole new understanding of my life with a chronic illness. Days where I've made life-altering decisions that have set me on a new path to wellness.

Of all the weeks that have passed with lupus in tow, I think the weeks surrounding my diagnosis are probably summed up best by the quote above. My life was forever changed in those few short weeks between my honeymoon and the moment when it was confirmed that I had systemic lupus. That was fourteen years ago, almost to the day.

Lupus led me down a path I never thought I'd go. But now that I'm here, I think I'll continue to make the most of it.

How about you?

Friday, January 16, 2015

New Lupus book on the market: Fabulupus: How to be young, successful, and fabulous (with lupus)

I am so excited to announce a brand new lupus book on the market. It just hit the shelves last month, and was co-authored by two young women, Jodie and Jessica. who were both diagnosed with lupus, one at the age of 13 and the other at 26.

Their book, Fabulupus: How to be Young, Successful, and Fabulous (with Lupus), is geared toward young people diagnosed with the chronic illness. It's an easy-to-read guide that covers all aspects the life of a youth with lupus.

Aptly named, it truly is a fabulous resource, and is sure to help millions of young people navigate their way through the ups and downs of this disease.

I was honored when the authors asked me to write the forward, and I thank them for including me in such a worthwhile project. I am thrilled for Jessica and Jodie, and wish them
success as they embark upon life as authors. It's a great ride!

You can check out their website here, where you can read more about their first-hand experience with lupus, the book's reviews, and purchase your very own copy of the book.

Here's my praise for the book, which you'll see on the back cover:

“A great blueprint for young people struggling with the diagnosis of a chronic illness like lupus. Need help finding your way? Want to be reminded that you’re not alone? This book could be your lifeline.”
Sara Gorman

And here's glimpse of what's within the book: 

What makes Fabulupus so fabulous?

  • It is the FIRST book written for young people with lupus!
  • It is the ONLY book written for young people with lupus!
  • It is written FOR young people with lupus BY young people with lupus!
  • Deal with your Relationships
  • Commit to your School & Education
  • Pursue your Careers & Employment
  • Manage your Money & Finances
  • Take pleasure in Staying Active
  • Enjoy Healthy Eating
  • Embrace your Self-Esteem & Style
  • Have fun with Leisure & Travel
  • Balance your Stress & Energy
  • Explore Spirituality
Here's a direct link to the book's listing on Amazon. Be sure to get a copy today. Enjoy! 

Wednesday, January 14, 2015

Making lupus less obvious: lessons from Deirdre's Hair Salon

My personal hair stylist Deirdre came to the rescue the other day. My new hair growth (from last year's bout of hair loss) has recently gone crazy (thankfully), and I have thick sprouts of short dark hair everywhere on my head. Most of the thick sprouts are behaving fairly well, falling into place just as they should. But the clumps where my head curves on the right and left have minds of their own. They prefer to stick straight out and up. Yikes! They just need another week or two before they'll be long enough to start laying down naturally, but until then, they require some serious taming.

That's where Deirdre came in. The clumps have been in this stage for about two weeks, and I've been using a hair dryer and my big roller brush to add fullness around the curves, hoping that the fluffier I make the rest of my hair, the more the clumps will blend in. But unfortunately, my strategy hasn't worked. Instead of blending in, I was adding oomph underneath the clumps, and they were sticking out more than ever. It looked like I had two little horns coming out of both sides of my head. I thought I looked like Maleficent. Bernie preferred to call them pony piggy horns. Either way, it was not the look I was going for.

So Deirdre offered to help. One morning, when I had a particularly bad case of My Little Pony bed head, she said, "Hey, Mom. Why don't I try to do your hair?" I jumped at the chance, primarily because I love when the girls play with my hair, and for almost 9 months, my thinning, falling hair couldn't be touched, but also, because I really needed a new styling strategy. And Dee always thinks strategically.

Within minutes, she had worked her magic. She had a spray bottle of water, and she just kept brushing and spraying, brushing and spraying. Turns out I didn't need to fluff the clumps up, I needed to tamp them down! So now - I have an entirely new approach. I still use my roller brush, but I start mid-way down the sides of my head, allowing those clumps to be as flat as possible. They stay down throughout the day, every single time. Who knew I was actually accentuating the problem, rather than minimizing it?

I've been guilty of this before. I used to try so hard to make lupus seem as inconspicuous as possible - only to find that I was making it more obvious than ever. For example, I used to think that to get something done, I simply needed to push through - ignoring signs of fatigue, fighting off pain, all in an effort to act like lupus wasn't taken its toll. Had I stopped and acknowledged my symptom activity throughout the day, I thought I would be accentuating the limitations of the disease. I thought accommodating for the illness was giving it attention it didn't deserve.

But here's what was really happening: by pushing everyday, my body would be forced to crash every night. I couldn't go out. I couldn't get through dinner. I was a crumpled, aching mess by the time 6pm rolled around. I would go straight to bed, and wake up the next morning still fatigued and hurting. I continued to pay for pushing through, and would be forced to mask my symptoms for days.  Not quite the textbook definition of "inconspicuous", right?

I learned that if I actually accommodated for the disease - in this particular case, by taking a nap mid-day - I could avoid the crumpled mess stage altogether. I no longer lost my evenings to fatigue. I never had to skip dinner because I was lifeless. I never woke the next morning still "paying" for the day before. I could simply take my break, and life could go on as normal.  I know there's the disruption of the nap, but that's NOTHING compared to the upheaval of getting sick for days!

So the next time you're making plans to go out, scheduling a vacation, or even just outlining the appointments for the week, think about how conspicuous your lupus is going to become. Are you accommodating for your symptom activity, so that you don't disrupt your life in a big way? Or by ignoring your need for a little extra sleep, a little less stress, or a lot less running around, are you allowing the disease to make an even bigger mess of things than it needs to? I hope it's the former, but if you need more examples on controlling the role of lupus, click here!

Friday, January 9, 2015

Despite Lupus Free Books contest - Winners announced!

It's time to announce the winners of the freebie copies of Despite Lupus! Thanks to everyone who sent in entry emails. As mentioned last week, I was floored by the interest in the contest, and it was so refreshing to hear from so many people from around the globe. I heard from lupus patients from literally every corner of the world, and I am truly thankful to have received such heartfelt emails. I wish I could accommodate every last one of you!

My intention was to choose three lucky winners, but having received so many entries, I've decided to share the wealth, and have chosen five winners. I'll divvy up the thirty copies as necessary. I figure it's better to share the sun-kissed copies with as many groups as possible! So without further delay, here are the recipients of the Despite Lupus sun-kissed copy contest, in no particular order:

The Enfield Lupus Support Group, outside of London, England (entry by Monique)

The dedicated team of chronic, auto-immune nurses at Harvard Pilgrim Health Care (entry by Sue)

The Surrey Lupus Support Group in Surrey, British Columbia (entry by Renuka)

The Dallas Diamonds support group in Dallas, Georgia (entry by Patti)

Greater Ohio Chapter, Lupus Foundation of America, in Brecksville, Ohio (entry by Brittney)

The sincere emails I received from these groups were quite touching, and I really appreciated the time and effort they spent in presenting their "case". There were several other emails that were just as lovely, and every email I received represented a person or group deserving of the books. I just wish I had more freebies to go around! 

Thanks again for participating, and to the winners - I will contact each of you individually to ensure that I have proper contact information before shipping your books. 

Have a fabulous weekend! 

Wednesday, January 7, 2015

The best lupus litmus test: What does Darwin do?

You're well aware that, over the years,  I've relied on my pug pups to aide in managing my life with lupus on more than one occasion. They encourage me to sleep, force me to stop and smell the roses, and remind me that asking for help isn't something to be ashamed of. Instead, I should walk tall when I'm smart enough to let someone else do for me that which I cannot.

(My late pug Henry had a tendency to take this last rule of thumb a bit too far; it wasn't really what he couldn't was merely anything and everything that he didn't want to do.)

But he's a pug, and he's passed on. So we'll let him slide.

You can read about my pugs' ability to keep me living well, despite lupus here, but here's a quick excerpt from a past post:

Pug lesson #4:  Don't hesitate to ask for help:

Because our pugs tend to wake up in the middle of the night and need a drink of water, we've placed a water bowl in the bathroom off of our master bedroom. Johnny and I do our best to fill up the bowl before going to bed, but every once in awhile, we forget. When Henry wakes up in the middle of the night and it's empty, he doesn't hesitate to ask someone to come to the rescue. His first attempt to get help is to tip the empty, plastic water bowl over with his paw so that it topples over and clanks, clanks, clanks against the tile floor. It's a wonderful sound to hear in the middle of the night, I can assure you, but most of the time, it gets our attention. However, if neither of his parents come running fast enough, Henry comes out of the bathroom, looks up like, "Uh, Helloooo. Didn't you hear the empty bowl clanking on the floor?" and gives a bark or two. If this still doesn't arouse us in the time he deems appropriate, he heads to the door stopper attached to the wall, and gives it a couple of "boing, boing, boings" to make sure we know he's in desperate need of water. Poor guy. Maybe he shouldn't head to the salt lick so soon before bed.

I was the exact opposite. I NEVER asked for help, and avoided doing so whenever possible. Henry reminded me that there are people in this world who are very willing to help, if you simply ask.  


Just recently, my other pug Darwin enlightened me to another truth - the (almost) unavoidable exhaustiveness of the holiday season. I used to kid myself that the weeks leading up to the December holidays weren't really that crazy. If things did get a little frenetic come the week before Christmas, it was simply an endurance test. Could I get it all done, and not break a sweat? In years past, I've given into the frenzy, refusing to admit that maybe I just couldn't handle it all. I believed every last gift had to be perfectly chosen, wrapped, and delivered with days to spare. That Christmas wasn't really Christmas unless 6 different batches of cookies were made. And if I did show signs of wear and tear due to the flurry of activity, I was failing the test. 

So much for poor perspectives on Christmases pasts! 

All that, of course, is a bunch of malarkey. We most likely cannot and should not strive to do it all. We're bound to miss a detail here, and let something slide there. And if we're really smart, we're going to let those things go intentionally. Because the purpose of Christmas is to enjoy time with friends and family. To do that, we have to be well. So skipping "x", or passing on "y" in order to finish out the year happy and healthy is actually a measure of our success, not failure. 

Baby Darwin, too, has his own measure - an exhaust-o-meter, if you will. Whatever time he rises in the morning indicates whether or not he (which usually translates to we) overdid it the day before. 

Most days, he gets up with us at 7am. He bids Deirdre farewell before school, and then retires to the couch for a mid-morning siesta. On mornings when he's really worked himself over the day before (i.e. watched while we worked ourselves over with various tasks, to-do's, and busyness), he sleeps in. I see him closer to 8:30 or 9. Sometimes before Bernie goes to school. Sometimes right after I come home. Either way, I know he just needed that extra shut eye to reset the meter. 

So a few weeks ago, when he didn't come down first thing in the morning, I shouldn't have been surprised. It was the morning after we threw our big annual Christmas party...and I knew he'd be tuckered out. After all, there was a lot of pressure on him to greet every person at the door, keep track of every low hanging plate, and anticipate exactly when the appetizers would come out of the oven. 

But when he didn't mosey down the stairs for the first time that day until 1:30pm, I knew it had been a real whopper of a party. (I'd checked on him throughout the morning, but he just kept snoring away.) 

His actions caused me to pause...because if he had to work extra hard to entertain, monitor, and manage all evening long, we most likely had to do the same. Because of Darwin's ability to selflessly lead by example, I decided to take an early nap that day. After taking care of his business, it was no surprise that Dar managed to come right back upstairs to sleep with me for another two hours. 

Playing host takes its toll, after all. Especially if you're as good a host as this guy!

Monday, January 5, 2015

Learning from the holiday craze, and improving on lupus one season at a time!

Happy New Year, everyone!

Over the holidays, my inbox was flooded with entries for the free copies of Despite Lupus. I'm happy so many of you responded to the offer. I just wish I had hundreds of copies to give away! I will be sifting through the emails this week, and the lucky winners will be announced this Friday. I'm extremely thankful for all your comments and positive feedback on my book. That certainly wasn't the point of the give-away, but I was overwhelmed by your kind and sincere words. Thanks to everyone for sharing!

As the holidays come to a close, I can officially say that I have emerged from the season unscathed. Hooray! Last year, I didn't fare too well between Thanksgiving and New Year's. The holidays fueled a flare that lasted for months, and I really didn't want to repeat those same mistakes this year. So I didn't. I slept when I needed to, ate well, maintained my exercise regimen, and stayed as low key before and during the holidays as I could. I took it nice and slow on the gift buying (starting early always helps), and allowed myself to drop dozens of to-do's from my list.  With the increase in activity, the busy social schedule, the added travel, and the deadline-driven nature of the holiday itself, I knew something had to give. So I was prepared to make choices in order to fend off the possibility of getting sick. We had to say no to several social engagements, and rearranged others to fit better into my napping schedule, but my strategy worked well.  I felt great the entire holiday season, and continue to feel 100%. And this was even a traveling holiday for us. I can't ask for much more than that!

Two of my golden rules during the holidays, particularly when traveling:

* Never sacrifice a nap.
* Book no more than one activity/get-together in a day.

It gets very tricky to stick to these some days, and as I said, I definitely had to say "no" to things that I would have loved to have done, but rules are rules. And these two continue to serve me well. (And I appreciated all of the encouragement from my in-laws to hit the hay. Daddy G - your nudges are always welcomed!)

In addition to these hard and fast rules, I usually end up learning something new about managing my life with lupus during the holidays, and this year was no exception. We had the pleasure of meeting up with two different groups of friends at the same restaurant two days apart, and I was amazed at how different I felt depending on the time of our get-together. Turns out I have an ideal social hour!

We met up with the first group at 12pm on Friday after Christmas. We'd originally planned to meet for brunch around 11am, but ended up moving it to 12pm. I thought nothing of it, since we'd have two good hours before my nap time, and Johnny would be able to deliver me straight to the hotel afterward, so I could get my rest. But as our lunch gathering got underway, I realized I was definitely starting to wilt. And quickly. I wasn't alarmingly tired, and I certainly enjoyed the gathering. But I was tired. We wrapped up right around 2pm, but it wasn't until we had our second get-together two days later that I realized just how tired I really had been.

Fast forward two days, and we found ourselves back at the same place, same booth, eating the same food. But this time, it was 4:45pm. I'd just gotten up from a great two hour nap, and this time, I was raring to go. I could just feel it. I was full of energy, with plenty of things to say, and excited about saying them. When I look back at our 12pm get-together, I can see how my pre-nap wind down was in full effect. I felt drained, and there was that familiar struggle of trying to find the energy to participate in the conversation. I loved seeing our friends, and I had so much to catch up on. But I distinctly remember that fatigue nagging at my every thought, making it a challenge to converse. When you're tired, it's so tempting to conserve energy by not talking, and I remember slouching back in the booth at one point, and thinking, "I wouldn't mind not talking for awhile." And that is very, very unlike me!

So based upon the stark contrast of our two get-togethers, I think it's clear when I'm at my best. It's a good thing to know. From now on, I'll be pushing for a late afternoon rendez-vous, or a mid-morning brunch. No reason to struggle when you don't have to!