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, ChronicBabe.com – Jenni’s ChronicBabe.com 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!

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, www.GoodBetterBestFood.blogspot.com , 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 pcrichey@yahoo.com or leave a comment here.  I will answer all of them.

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!

Honored to be one of Healthline's Best Health Blogs!

"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?

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

Author, “Despite Lupus: How to Live Well with a Chronic Illness”

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! 

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!