My guest spot on Despite Lupus

This is a departure from my regular blogs which typically focus on Good wine, Better recipes and the Best kind of living.  A while back my friend Sara asked my to do a guest spot on her blog Despite Lupus and share my health situation and  journey with a new Lupus drug called Benlysta.  These are typically not easy things to share for me, but I know it will help people and I would do just about anything for Sara.  Sara entered my life as a kind stranger who gave me a lot of advice about how to put my life back together after my diagnosis and today I am so thankful to call her my friend. 

If you have any questions about Lupus, autoimmune diseases, Benlysta or my story in general, feel free to leave a comment below or email me directly at  I will answer every question.

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.

Friday Five--Bring on 2015

So although we are more than two weeks into 2015, I am delving into the topic of resolutions. Not just about food and healthy living, which is the cornerstone of Good Better Best Food, but also ways that are going to make me live happier.

This blog didn't get written when I wanted to due to technical difficulties--think hard drive crash the week before Christmas---nightmare.  Then on New Year's Eve....I got the flu, and yes I got a flu shot this year--double nightmare.  I have spent the last two weeks trying to shake the aftermaths of this flu and it's not fun or easy.

So now onto my personal resolutions for 2015, Friday Five style. 

1. Take the compliment: I have decided that when someone pays me a compliment I am just going to say "thank you".  Not "oh please this dress is so old" or "I am so tired today", just say thank you. 

2. Relaxing music to and from work: It snowed last week, sort of.  As I got into the car to drive to work I decided to hook up the radio from my phone and listen to some David Foster radio.  I almost floated into work.  I arrived relaxed and like my commute didn't take any time at all.  What I found is that I had such a better week shutting out the noise of talk radio and the latest Kardashian escapade.

3. No wine during the week: Having the flu meant that I didn't have my nightly glass of Sauvignon Blanc with dinner.  Typically just one but if you read this blog with any regularity, you know I like my wine.  I also know that wine does cause inflammation and with my underlying health conditions this is not really the best combination for me.  As I am recovering I am finding that I do feel Better without my nightly glass of wine.  Let's try to just reserve this for Friday and Saturday nights only, well and the occasional girls night.

4. Cup of warm water every morning: With the flu, I spent a lot of time reading things about health on the internet.  I know not always the most reliable source.  One article that I found said that your body detoxes a lot while you sleep, and if you drink a cup of warm water (usually I drink cold) in the morning it really helps to flush things out of your system.  It's just a cup of warm water so what can it hurt?  I have been doing this for almost two weeks now and I do think that there is something to this.

5. Spend more time with people I really like: I always feel like I am rushing around and interacting with people that I have to interact with.  I have decided that this year, I going to make an effort to spend time with people I really like. 

I believe every day can be Good, but there are lot of things I can be Better at, especially where it comes to my own enjoyment and self care.  I truly believe that if I work on concepts listed in this Friday Five, I can make 2015 the Best year yet.

Share your resolutions with me in the comments or feel free to ask for ideas to help you with your resolutions.

Have the Best year!
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