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!
Chapters:
  • 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 your 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 do...it 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!