Friday, February 5, 2016

Advertising and Promotion Extraordinaire: Introducing my niece, Emma.

As a small business owner, I am extremely fortunate to be surrounded by friends and family who fully support my endeavors. I have many directions in which I can turn for help, and I know Pillbag/Despite Lupus headquarters wouldn't run as smoothly without that support system in place. 

My husband lends a hand on a daily basis, my girls cheer for every package that goes out the door, and my sister has worked enough gifts shows to last a lifetime. My mom has helped fill catalog orders calling for hundreds of pillbags, my in-laws generate sales like you've never seen, and I have friends who flaunt their pillbags to anyone and everyone who will listen. And that's just the beginning...

I am so thankful for that support, and it's hard to imagine where I would be without it. And yet, there is one young lady who continually goes above and beyond in her unwavering support and encouragement of my businesses, and that is my niece, Emma. From the day I published my book, she has taken a keen interest in my ventures, and she's never let up. She's worked gift shows, participated in pillbag videos, assisted in fabric selection, and weighed in on design and product development. She's chosen to use my book and my pillbags in mutliple class presentations, being sure to request samples for demonstration, and marketing materials for distribution, particularly during parent-attended school events. :) 

Emma is and continues to be an invaluable member of the Pillbag/Despite Lupus team, so I thought I'd share a glimpse of her most recent promotional efforts. Below, you'll find a Pillbag design color chart, where she's hand-drawn a replica of each Pillbag design. This visual was extremely helpful as I was deciding on the fabric combinations for our most recent Pillbags, the custom designed Pillfold Fabulupus and the larger, extended Pillfold Long Beach. Though not featured in the diagram below (as they were still in the design phase), both bags can now be found here!



And below is a copy of a recent class presentation - where she was tasked with providing a "How-to" (complete with a live pillbag demo) for her class. I couldn't have said it better myself! 

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Pillbags: A How-To by Emma R.

Do you ever want a more fashionable way to carry your medication? Do you ever get embarrassed to carry around pillboxes? Try a pillfold or pillpouch!

What’s a pillfold? A pillfold is a small bag that folds up to store your pills. There are eight slots that zipper closed so you can insert your pills into the bag. Seven out of eight have the days of the week and suns or moons. The eighth is conveniently blank, making it so one could choose what they’d like.

What’s a pillpouch? A pillpouch is a cute little bag with elastic straps inside so you can put your pillbottles in. It looks exactly like a little bag.

To use a pillfold, you sort your pills into the correct slots and zip them closed. To use a pillpouch, you insert your pillbottles into the straps inside and pull the drawstring to ‘cinch’ it closed.

These wonderful pillbags were invented by Sara Gorman, a victim of Lupus.  She hopes to make “more manly” ones, as she has them in pink and flowers and zigzags, etc.  For more information, look at www.pillfold.com.

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Wednesday, February 3, 2016

Another Lupus Nephritis study: paving the way for another FDA approved drug for lupus, I hope!

About six months ago, I blogged about a new study for lupus nephritis, which was designed to explore the efficacy of an immunosuppressant drug developed by a Canadian-based pharma company. I was so excited because for the duration of the study, you could remain on Cellcept. Unfortunately, I was ineligible for participation, due to my distance from a testing site, but I hope some of you were able to take part. I'm up for just about anything, as long as I have my beloved Cellcept running through my veins! 

This month, I am pleased to announce yet another lupus nephritis research effort which allows its participants to remain on Cellcept, this time from the folks at Genentech. They have announced the initiation of a Phase II clinical trial investigating the use of Gazyva (obinutuzumab) in patients with lupus nephritis. Details from the press release are below: 

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The aim of the this study is to compare the efficacy and safety of Obinutuzumab plus Mycophenolate, MMF, (also known as Cellcept), with Placebo plus MMF in Class III and IV patients with proliferative lupus nephritis. Lupus nephritis affects approximately 3 out of every 10,000 people. Up to 60% of lupus patients will develop lupus nephritis. (As a member of that 60% who developed lupus nephritis, I am thrilled at the R&D surge in this specific area!

“Lupus nephritis is a serious disease and if not controlled, lupus nephritis can lead to kidney failure,” said Brad Rovin, MD, Head, Division of Nephrology, Ohio State University at The Ohio State University Medical Center. “It is our hope that this trial will demonstrate that obinutuzumab is an efficient and safe treatment option for patients with lupus nephritis.”

Obinutuzumab is a CD20-directed cytolytic antibody and is indicated, in combination with chlorambucil, for the treatment of patients with previously untreated chronic lymphocytic leukemia.

“The initiation of this clinical trial reinforces Genentech’s commitment to finding a treatment for patients with rare diseases, such as lupus nephritis,” said Jeffrey Siegel, MD, Senior Group Medical Director of Immunology, Genentech.

Facts about Lupus Nephritis:
·         The body’s immune system targets it own body tissues with lupus. Lupus nephritis happens when lupus involves the kidneys.
·         For many, the first noticeable symptom of lupus nephritis is the swelling of the legs, ankles and feet, however, the disease may be “silent” and not cause any symptoms. 
·         Kidney damage from lupus can be mild or severe and cause damage to the glomeruli or the filtering units of the kidney.
·         If both kidneys fail, people with lupus nephritis may need dialysis.         
·         About 90 percent of people diagnosed with lupus are women.

Obinutuzumab is currently approved, in combination with chlorambucil, for the treatment of patients with previously untreated chronic lymphocytic leukemia. Visit http://www.gene.com/download/pdf/gazyva_prescribing.pdf for full prescribing information.

Monday, February 1, 2016

Chronic Pain Disorders honors lupus blogs!

The Best Lupus Blogs For 2016Here, at Despite Lupus, we are thrilled that Chronic Pain Disorders chose to feature a list of top Lupus blogs of 2016.  And we're even more thrilled (and honored) to have been included!

Check out their site here, and see the full list of great blogs. Chronic pain can be such a debilitating symptom of Lupus - so thanks for acknowledging our plight!

Wednesday, January 20, 2016

One of the true secrets to surviving lupus: sisterly love and support!

Back in November, the Lupus Foundation of America, D.C./Maryland/Virginia Chapter asked me and my sister to say a few words at their annual Gala.  They thought it was important for those attending to hear about lupus, not only from the perspective of a patient, but also from that of a caregiver. We were thrilled to join them! 

A few weeks before, they'd seen my sister and I working side by side at an LFA DMV all-day event where I was speaking on a panel. They were struck by what a close, supportive relationship we had. In fact, they referred to my sister as my "watchdog" - ushering me off for my mid-day nap, assuring my co-presenters that I would be back in time for our presentation, and sharing her experience of what a lupus journey looked like from her perspective. 

My sister and I were excited to share the gala stage together, and I joked at the beginning of our speech that evening that as along as we didn't spontaneously break out into show tunes from our childhood, I thought we'd be okay. 


Here is a copy of what I said that evening. I can't stress how important it is to have supportive, loving family members in your corner when battling a chronic illness. I was and am surrounded with a husband, children, parents, in-laws, and friends who continue to offer emotional and physical support. But I am forever grateful for the love and care my sister gave me during my darkest days with lupus. I'm thrilled that we've had sunnier days to share since then, too!  

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When I was diagnosed with systemic lupus I was 26 years old. I was young, fiery, and independent - none of which were compatible with a chronic illness that inflicted debilitating fatigue and immobilizing pain on its victims. 

When I was diagnosed, I was also a newlywed. I had been married just six weeks when my husband and I found out I had lupus. You can imagine how difficult it was to work a chronic illness into the life of newlyweds. Overnight, my husband became my caretaker, and we both struggled to learn how to handle our new roles. 

At the time of my diagnosis, I was, and still am, a little sister. As a little sister, I'd spent most of my life trying to keep up. I was always trying to show that I was tough enough, fast enough, and smart enough to hang with the big kids. So that's the way I approached life with lupus.  I thought that if I was tough enough, fast enough, and smart enough, I could outrun and outlast lupus. Of course, that's not the way a chronic illness works. In fact, as I was employing my strategy, I was literally running my body into the ground. And there, to pick up the pieces time and again, was my sister. 

She made midnight runs with me to the ER, and nursed me back to health on many occasions. She cooked for me, cleaned my house, and weeded my garden. She drove me to doctor's appointments, and fought with my insurance company. If she found out I was working late, she'd call and gently harass me until she knew I was on my way home from the office. If we were all going out for the evening, she would always come separately, so that she could drive me home early when, inevitably, I'd practically collapse from fatigue, pain or both.

Eventually, I learned how to make better decisions on my own, and was able to take steps to live well with my illness. B
ut I'll tell you this: the support I received from my sister, the kind you don't even have to ask for, is one of the main reasons I'm able to stand up here and be with you tonight. 

Friday, January 15, 2016

Wednesday, January 13, 2016

GUEST POST: Benlysta Part 2: Three Years and Forever

I am thrilled once again to feature friend, fellow lupus patient, and health blogger, Patty Richey here on Despite Lupus. About a year ago, Patty shared with us Part I of her experience with Benlysta, the first FDA-approved drug for lupus in more than 50 years (approved back in 2011).Today, she's sharing the second part of that story, and I can't thank her enough for opening up for the benefit of those considering or starting Benlysta! Without further ado, here's Part II of Patty's journey: 
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Benlysta Part 2: Three Years and Forever by Guest Blogger Patty Richey, Good Better Best Food
The two most frequent questions I am asked when discussing my Benlysta infusions are “How long have you been doing that” and “How long will your treatment last?”  The answers are: Three years and forever.
I started Benlysta infusions on January 2, 2013--otherwise known as the day that I started to get some semblance of my life back.  Right before I started the treatments people would ask me if I was scared about trying something like this, especially a drug that had not been on the market very long.  Frankly, I was more scared to not try it. I was way more scared of having to live every day in the condition I was in when there was something that could potentially help. Do I hate needles, IVs and hospitals?  Yes, but I hate lupus more.  I went into this treatment with an open mind, an open heart and the hand to hold of Running Daddy and the Sweet Boy.
So how did this start? In the beginning you have three loading doses two weeks apart and I did those up at my doctor’s hospital in Baltimore.  I prepped for the first treatment with a high protein breakfast, Gatorade and a ride to the hospital from Running Daddy.  The first round went well with fantastic nurses in the infusion center and a couple of sticks to finally get the IV into my rolling veins.  When it was finished, and it took about 2-3 hours start to finish, I felt fine.  As we drove back to pick up the Sweet Boy from Dancing Granny’s house I felt a little hungry but I also felt good, good in a way that I could barely remember.  I went home to lie down later and then after that I was also good for two weeks until the next loading dose infusion.
Infusion two was a little more challenging.  Since I did so well with Infusion #1, I drove myself to the treatment.  When the treatment was finished, I went into the restroom and looked in the mirror, my chest was red, really red.  I went to the nurse in a mild panic.  I was not so much upset with what might be happening, I was worried that I would not be able to continue the treatments.  At the advice of Dr. B they gave me an additional bag of IV fluid and a Benadryl.  The rash started to disappear.  The nurses told me that if a patient is going to get a rash from any infusion, not just Benlysta, it is always after the second one.  They did determine that I would be able to try to continue the infusions but would do so with a pre-med of a Benadryl before each infusion. I would be able to soldier on.
I had the third loading dose without complication but with a ride from Running Daddy.  I could now have the infusions monthly and they were able to change my infusions to a Johns Hopkins center closer to my house.  I switched from having a morning infusion and then trying to go back to work in the afternoon to going into work in the morning and then getting a 1pm infusion appointment.  I am fine to drive home but then typically get into bed around 7:30 pm on infusion night and sleep through the night.  
While I know that everyone has different experiences with Benlysta, I can tell you after more than three years of being on this drug, I know it works for me.  My fatigue is less, my pain is less, my inflammation is better and I feel like I even have my personality back.  For so many years I felt like a shell of a person, up and about with not much left inside.  It was not depression. I was just a person who was put together with chewing gum and duct tape every day just trying to get through the hours until I could go to sleep again to escape the fatigue and the pain.
On are recent appointment with Dr. B  I mentioned to him “remember all those times I would come in the office and say that one day I hope I will walk in here and tell you that I am actually doing better—well today is that day.”  I am hardly cured but both Dr. B and I both agree that I am so much better than I was from 2009 to 2012.  It has taken me six years to get here, but this drug is helping me put my life back together again.
I have Benlysta infusions every four weeks and there is definitely a life cycle for its effectiveness.  I am in good shape for about 3 to 3 ½ weeks after each infusion and I then I start to feel the fatigue and pain coming on.  I also think I don’t look as great as I near the day for my “date with Ben.”
While I wish Benlysta was something that I could do for six weeks and be cured, it’s just not my reality.  So I need to embrace it for what it is and know that if it keeps working the way it does, that I will do this forever and just be at peace with it. This treatment has given me my life back and I am so blessed to have my family especially Running Daddy and the Sweet Boy. I am just so grateful for all of the scientists who help develop these type of treatments and Dr. B who is smart, kind and thoughtful in every sense of the word.  There is also a team of infusion nurses who help me every month.  They look out for me, take care of me and we totally make each other laugh.  These are the gifts that Benlysta has given me and in a way, lupus helped put some of these amazing people in my life.  
If you have any questions I can answer about lupus, autoimmune diseases or Benlysta, please feel free to leave them here or email me at goodbetterbestfood@gmail.com.   I will answer every one.
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You can read more about Patty on her own blog, Good Better Best Food, where she talks about healthy eating made simple. What's the premise behind Good Better Best Food? - 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.

Tuesday, January 12, 2016

My Multiple Sclerosis Secret

Sharing the link to one of the Secret sites, in an attempt to reach the people who can benefit the most.  Be sure to pass along to those you think may be interested. We autoimmunies have to stick together!

My Multiple Sclerosis Secret -  http://mymssecret.com/