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!  

***

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: 
***
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.
***
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/

Wednesday, January 6, 2016

The new Long Beach Pillfold: Larger and roomier, with more space for your pills!

When I came up with the concept for the pillbags, and had sewn a prototype, one of the first people I showed it to was my mom. She's always been a #1 supporter of my endeavors. And because of her past experience caring for my grandmother, as well as managing her own medications, I figured she knew her way around a prescription bottle. So off I went to consult her.

As expected, she gave me the support and encouragement I needed to take the next steps in launching my business. In return for her consultation, I asked if she wanted to start using a Pillbag, and she opted for a Pillpouch. I was hoping she'd try out the Pillfold (my personal favorite), but she declined, gently explaining that her daily medication simply couldn't fit inside the standard sized Pillfold pockets. I knew her robust pill regimen, and she was absolutely right. But I took note, and filed it away for future Pillbag designs.

Fast forward a few years, and my mom is still on her hefty pill regimen. As it turns out, so are a lot of other pill takers! After finding success with our standard pillfolds, I went back to the design table, and I am extremely proud to launch our latest pillfold design, the Pillfold Long Beach.

The Long Beach is an extended version, with deeper, roomier pockets to store and organize every last pill in your medication regimen. The generous pocket space is more than double that of our standard pillfolds, and the Long Beach comes in its own signature green pattern with hot pink interior.





This newest pillfold is named in honor of my mom, Sandy, who spent her teenage years sunning herself on the beaches of Long Beach, CA, and who, in her later years, has come to need a larger, LONGer,  pillfold. Mom - I've finally got you covered!

Check out our newest design here, and please spread the word!