Friday, September 30, 2016

Bee Content Yoga - Choosing a Yoga class for Chronic Illness - by Christa Fairbrother

I am excited to bring the second post in our yoga series from Christa Fairbrother. Her first post, The 10 Benefits of Yoga, highlighted the advantages of yoga, as they apply to chronic illness. In today's post, Christa breaks down the types of yoga available - and for someone like me, who doesn't know very much about the discipline - this is an eye-opening article!

Yoga must be top of mind for lupites everywhere, as the Lupus Foundation just published a post yesterday on the subject, and you can read it here. Now you'll have several resources to make an informed decision about starting a yoga program. (Christa and I also recommend checking with your doctor, too!) 

How to choose a yoga class if you have a chronic illness 
and don’t know where to start


Maybe you’ve been wanting to try yoga and you’re a bit intimidated by the language you don’t recognize, or incense and sitar music.  Just like any field – knitting, sky diving, or dog training, yoga has its lingo.  Starting with knowing some terminology can help you succeed.   

Yoga has ‘brands’ or types that are named after the founders such as Iyengar or Bikram to name two on opposite ends of the spectrum.  Iyengar teachers are well trained and the style is known for using lots of props to accommodate individuals.  Bikram is done with a script in a superheated room to stress your body and is often not appropriate for people with systemic health issues.  Each has a governing body you can Google to learn more about.
Then there are yoga styles such as hatha, power, Vinyasana or flow, chair, gentle, and many others.  These are usually explained in an individual studio’s class descriptions.  Hatha is considered traditional yoga, Vinyasa/flow/power are strong workouts while gentle/restorative/chair are much more moderate.  
There are also two yoga organizations that are helpful to know about when choosing a teacher.  Yoga Alliance is a non-profit that registers yoga teachers.  RYT-200 is the basic credential that every teacher should have as a minimum.  IAYT is the International Association of Yoga Therapists.  They certify and support the work of yoga therapists.  A yoga therapist has undergone a minimum of 800 hours of training and is qualified to work with individuals with a broad spectrum of health needs.
A yoga therapist, many of whom also teach group classes, is a great choice for anyone with health issues like lupus.  Working one on one with a therapist is a good choice for anyone who’s struggled in regular classes because of health issues or needs a personalized plan to stay in line with a Dr.’s recommendations.
Aqua yoga is also a modality to consider.  It is no impact so it’s non stressful for sore joints.  It’s highly accessible for those with mobility or weight challenges and it is also super fun.  The nature of working outdoors in the pool is a different environment than a yoga studio, and it might appeal to you if the yoga studio atmosphere is not your cup of tea.
So how does one put this all together to choose a yoga class for a lupus yogi?  First, exercise your body awareness.  Yoga will help you get better at that but do some self-exploration because you know your lupus is different every day.  For example, are your symptoms worse in the afternoon and you’re in the middle of a mild flare?  That kind of day would be a morning gentle class.  If you’re really stable and want some cardio, try the power class.  If you’re having a consistent bad flare, you might just want to do a short restorative session.  So match the style and time of day to your needs.
If you’re still not sure, do some research.  Check out the studio website, read some reviews, call the studio and ask before you show up for your first class.  They can steer you towards the class and the teacher who’s most appropriate for you.  When you show up, disclose your health status to your teacher.  Before class starts, check in with the teacher so you don’t have tell everyone publicly when the teacher might ask in the beginning of class, “Is there anything going on in your body you need to tell me about?”.  That gives the teacher the opportunity to make suggestions and modifications for you that will support you on that day.
Also, yoga is more than physical exercise.  There are 8 limbs of yoga of which asana, or the poses most people know, are one limb.  Make use of the other limbs.  Yoga philosophy is very helpful for managing chronic diseases.  Learning about your health needs, being kind to yourself, and appropriately managing your energy levels are all included in yoga philosophy.   On those days when you’ve exercised body awareness and need to be kind and take a break, practice some meditation and do some breathing exercises.  You’re still practicing yoga and taking care of yourself.  Anyone with chronic health problems needs as big a toolbox as possible to manage everything.
Remember, if you don’t currently do yoga, check in with your doctor first.  Your Dr. might not know anything about yoga but they do know your current health status and can give you some pointers about exercise in general or, they might even be able to offer an appropriate referral.  This becomes even more valuable as many lupus patients have concurrent conditions.    Here’s an article about the safety of yoga you can reference for yourself or your health care provider.
The field of yoga is huge these days.  Over 20 million people in the US are currently practicing yoga.  If you take a risk on a class, and it’s not for you, try another one.  It’s like a bad haircut, you still need your haircut so you change stylists to one who doesn’t use incense and who’s music you like.  There are a huge number of places to practice these days.  The important thing is to find what works for you.  Remember yoga is about self knowledge, you want a class that supports you in being the world’s leading health expert on you.  Everyone brings something to the mat, you might be bringing lupus, but it doesn’t have to keep you from practicing.
About Christa – I am a RYT-200 who specializes in working with those with chronic health challenges.  I came to this work after a lifetime of yoga practice and a rheumatic diagnosis myself, Mixed Connective Tissue Disease.  I am also a Certified Yoga for Arthritis instructor and the Program Director for Yoga for Arthritis.  While Yoga for Arthritis primarily serves arthritis patients, it does encompass the full suite of rheumatic conditions.  They did a small pilot study on Yoga as a Form of Self-Care in Systematic Lupus Erythematosus (SLE) which they would like to expand and publish.  Please feel free to reach out or connect with me further.
My website
My Facebook Group for Yoga for Lupus
Yoga for Arthritis website

SunGrubbies - Last day to save!

Women Derby Hats

Don't forget - today is the last day to take advantage of the SunGrubbies promotion! Through September 30th, SunGrubbies is offering all Despite Lupus readers 10% off their purchase from their website. Simply type in the code “DESPITELUPUS10” on their website to save! 

Thursday, September 29, 2016

Fabulupus in the LFA News and new lower price on the Butterfly Pillfold!


Have you seen the Lupus Foundation of America's new post about Fabulupus? They compile their top ten quotes from the book. And they are words to live by! 

Check out the post here, and see one of my favorite quotes below. 

On having a voice: “…the most important skill to learn and implement is to say “No” and to be willing to acknowledge when you are becoming overloaded before your health becomes affected”

And the article was perfectly timed, as we just lowered the price of our Fabulupus Pillfold

You can now get your purple butterfly fix at a new lower price. Check out the Fabulupus book and pillfold here. And take advantage of even MORE savings with the Fabulupus Combo. Both of your pretty purple favorites combined!  

Wednesday, September 28, 2016

Just a few more days until the Walk for Lupus in New Hampshire!



It's crunch time for the New Hampshire Walk for Lupus!

Living in the Manchester, NH area? Be sure to show your support by coming out for the walk. You can also support the cause by visiting the Lupus Foundation of New England website. The website re-design they did earlier this year is spectacular, and I am honored that the Foundation chose to feature my blog on their front page. Know that I take my patient advocacy very seriously, and will continue to blog away as long as my lupus is in tow!

Tweeting about the Walk, or lupus in general? Be sure to add the hashtag #IKNOWLUPUS to your post. LUPUS NE has created a campaign that's sure to reach millions. Let's help spread the word one tweet at a time. And best of luck to those walking on Saturday!

Friday, September 23, 2016

Managing your own expectations with lupus in tow: a work in progress

At the beginning of the month, I posted about the new found freedom I have, now that both my girls are in school full-time. You can read that post here, entitled "Walk, don't Run."  Many of us experience the Back-To-School euphoria that comes at the beginning of September. But I know I'm not alone in experiencing the "But Where does the Time Go?" slump that hits after you realize that  B-T-S doesn't equate to eating bonbons. There's still stuff to get done. Add to that the lofty goals and grand expectations we set for ourselves in the Fall, and many of us have overbooked before the month is even out.

Thus, I know I need to employ a few strategies to make sure I don't implode. Remember - as a lupus patient who fights fatigue, I have a daily nap to attend to, between the hours of 1-3pm. That means that I have to work backwards from 1 pm every single day. How am I doing so far? I'm getting there. I'm about 65% for fitting in a sufficiently long nap before I go to pick up the kids. The other 35% could use some tweaking. My intentions are good, but I struggle to stick to that one o'clock deadline. Here's what I need to consider to ensure that I get my rest:

1) Go slowly - I have to keep in mind that this new schedule isn't going to go away anytime soon. It's not temporary. I will still have from 8am-1pm tomorrow, and next week, and the week after that. There will be exceptions, of course. But generally speaking, whatever I don't finish today, can most likely be tackled tomorrow.

For the sake of long-term strategic planning, and for my own peace of mind, I do keep a running list of all of the things I plan to accomplish (one for work, one for home). I know I can't get to all of them on Day 1. But knowing they're down on paper, and not just swirling around in my head makes me feel grounded. It's as if writing them down is step 1; making them happen is step 2. In fact, when I do write my grand list of to-do's, I find that become more specific, and they become more attainable action items than just "Organize the kitchen" or "Increase sales for 3Q".

2) Find the flexibility - The concept of "self-imposed" can wreak havoc on the life of a lupus patient. This was never more true than in the early years of my disease. I desperately wanted to maintain my high level of work and social commitments, not for other people, but to prove something to myself. My work was willing to bend; I wasn't. My friends and family were happy with a quiet evening at home; I refused. I put pressure on myself to look and act like lupus wasn't affecting me. Those expectations were self-imposed. And my health suffered greatly for it.

So when I think about all of the things I need to do to grow my business, get the house in shape, or plan for the future, I'm going to go easy on myself. I don't need to add stress where it doesn't exist. I'm going to find and appreciate the flexibility that I have. Granted, not every job allows one to work from home, and we all have family commitments that are non-negotiable. But I bet we can each eek out a little more flexibility on when, how, and where we make things happen. I like to think small on this one - grocery delivery, carpooling, ordering out. Just because you promised yourself you would do "x", doesn't mean the world will come to an end if it doesn't take place this one time.

2) Resist the urge to finish - I come from a long line of folks who live and breath by the phrase "just one more cast". (My father and grandfather were fisherman. What can I say?) This mentality, the one where you simply can't pull yourself away from what you're doing until you've finished, is a dangerous one. At one o'clock, I have to lift my fingers from the laptop keyboard. I have to put down the laundry I'm folding. I simply have to stop. I can't tweak. Or futz. Or fiddle. I'm just going to save my work, and walk away. (Eeeeww. That doesn't sound fun at all, does it?)

3) Prioritize and quantify - In theory, I've always prioritized my lists. But now that I have a new schedule within which to work, I find that my mind is bigger than my time (or make that my time-management skills.) So I've started to allot a time to my tasks. Most often, I'll assign 20 minutes here, or 45 minutes there, only to find I have 4 hours and 45 minutes worth of stuff to accomplish in the 3 1/2 hours I have available. So I prioritize. I pick the 3 or 4 things that I really want to get done that day, and I make those my new musts for the day. I remind myself of #1, and I rejoice in the fact that I have #2, and I force myself to stick to #3.

I'll continue to let you know how it goes!

Monday, September 19, 2016

Lupus Foundation of Pennsylvania- Join me at the upcoming workshop, 10/8/16!

I am thrilled to be joining the Lupus Foundation of Pennsylvania for their upcoming Living with Lupus Workshop on October 8th. Details are below, and I love that my dad's hand modeling made their brochure. I appreciate the pillbag highlight! Check out their website for more details here.   Hope to see you there!

Living with Lupus: Education & Empowerment

Saturday, October 8, 2016 8:30 am - 12:00 pm
Living with Lupus: Education & Empowerment
Location:Holiday Inn Express Suites - Allentown West

Description:5630 West Tighman St.
Allentown, PA 18104

8:30 am Registration Check-in and Continental Breakfast

Program begins at 9:00 am

Speakers & Topics

Marie O'Brien, D.O. - What is Lupus & Manifestations of Lupus

Carolyn Casey, D.O. - Lupus Diagnosis & Treatment

Sara Gorman - Finding Your Voice - How to Tell Your Lupus Story With Confidence

Registration fee
$15 - members of LFP
$20 - non-members

Registration deadline October 6th

7

Friday, September 16, 2016

Bee Content Yoga - Lupus and Chronic Illness, featuring Christa Fairbrother, Guest Blogger

I am thrilled to bring you a series of guest posts from Christa Fairbrother, owner of Bee Content Yoga, and Program Director for Yoga for Arthritis. Below she shares valuable information about why yoga is so good for chronic illness. She speaks from personal experience, as she uses yoga to help manage her own diagnosis of Mixed Connective Tissue Disease. You can find out more about her company and philosophy on her websiteThis is a two part series, so be sure to check back for her second post at the end of the month. 



10 Benefits of Yoga for people with 
chronic illness
There are over 20 million people in the US now practicing yoga. That’s almost 10% of the population. You might be in the other 90%. That 90% is made up of people who have some vague idea that yoga might be good, who’ve maybe read an article or talked to someone, as well as people who think yoga is a waste of time unless you’re a dancer and it’s all woo woo anyway.
I’m the Program Director for Yoga for Arthritis which is an evidence based training program for yoga teachers to help people with rheumatic diseases in yoga classes.  In the spirit of evidence based, I wanted to give you a checklist of the potential benefits of yoga to people with lupus.  
Notice I already rolled out potential.  The impacts of yoga have not been studied on lupus patients.  When I say yoga reduces pain, it’s been shown to reduce pain but not specifically in lupus patients, just in the general population or people with a similar condition.  Until there are studies on how yoga impacts lupus, we have to infer.  So please keep in mind the limitations of the evidence as well as the strength of common sense.
Yoga reduces pain – Yoga has been to shown to reduce pain in a wide array of chronic diseases such as arthritis, fibromyalgia and chronic back pain.
Yoga reduces inflammation.
Yoga reduces stress.
Yoga increases disease coping skills.
Yoga reduces fatigue.
Yoga reduces depression.
Yoga reduces anxiety.
Yoga strengthens relationships.
Yoga reduces insomnia and improves sleep quality.
Yoga improves digestion.
These 10 benefits focus on impacts more likely to be encountered by someone with a chronic illness. Yoga does increase flexibility, range of motion and strength of course also.  While people with lupus might appreciate those benefits as well, some of these chronic issues are more impactful day to day for us.
Achieving all these benefits through yoga is extremely safe.  This 2015 meta-analysis of yoga research showed yoga is no more unsafe than basically being alive.  Each of these links is to a recent, peer-reviewed journal.  Yoga has gone mainstream and the research is beginning to catch up.  The gold standard however is how it makes you feel.  Give yoga a try.  My next guest post is about how to choose a class.  Do a little research, go to class and enjoy the benefits yourself.
About Christa – I am a RYT-200 who specializes in working with those with chronic health challenges.  I came to this work after a lifetime of yoga practice and a rheumatic diagnosis myself, Mixed Connective Tissue Disease.  I am also a Certified Yoga for Arthritis instructor and the Program Director for Yoga for Arthritis.  While Yoga for Arthritis primarily serves arthritis patients, it does encompass the full suite of rheumatic conditions.  They did a small pilot study on Yoga as a Form of Self-Care in Systematic Lupus Erythematosus (SLE) which they would like to expand and publish.  Please feel free to reach out or connect with me further.
Yoga for Arthritis website

Thursday, September 15, 2016

Lupus and an Immune System "Off Switch". I'll take one, please!

Exciting news from Lupus Alliance Research: 

Discovery of Immune System 'Off Switch' Speeds Hunt for Lupus Therapies

Scientists at University of Massachusetts Medical School have discovered a new piece of the complex jigsaw that makes up our immune system - one that ensures the immune response stays switched off in the absence of germs.
The study reported in the leading scientific journal Cell - and supported by the Lupus Research Institute* - could help researchers find new ways to treat lupus and other autoimmune diseases.
Katherine A. Fitzgerald, PhD, Professor of Medicine, looked at the role of a type of RNA molecule in lupus, called lincRNA. Although RNA molecules are essential in all forms of life, most lincRNA are thought to lack function. Dr. Fitzgerald, however, found otherwise. She focused her novel exploration on one of these RNAs called lincRNA-EPS, and found that its levels change when the immune system goes into action to fight off germs.
Her study exposed two groups of mice - one with and one without this lincRNA - to the same germs, and found very different reactions. She discovered that groups lacking lincRNA-EPS produced massive amounts of inflammation. Dr. Fitzgerald notes, "The results show that this lincRNA switches off the body's inflammation response unless germs that need fighting are present."

"By discovering what lincRNAs do, our study reveals a whole new layer of regulation that we didn't know existed in the immune system. We hope these molecules can be harnessed to develop new therapies for autoimmune diseases," she explains.
Read more about Fitzgerald's findings and what they mean for people with lupus in the press release from University of Massachusetts Medical School here.
* The LRI has now merged with the Alliance for Lupus Research and the S.L.E. Lupus Foundation to form the Lupus Research Alliance.

Monday, September 12, 2016

Rock, Paper, Cocktails! Hope to see you at this year's Vienna, VA event! 9.25.16

Image result for rock paper cocktails 2016



Looking forward to the annual Rock, Paper, Cocktails event coming up on September 25th!

This year's shopping extravaganza will be held at Westwood Country Club, in Vienna, VA, and is sure to deliver the finest boutique vendors Vienna has ever seen.

I always look forward to setting up shop at RPC, and raising money for a great cause. The proceeds from this year's event go to Inova's Life with Cancer and Amy's Army. I usually get a jump start on a ton of Christmas shopping while I'm there. Can't wait to start crossing gifts off my list!
Rock, Paper, Cocktail
Details are below, and you can buy tickets here. Check out the RPC website here, read about Amy's Army here, and check out the list of vendors here. See you there!


***
ROCK, PAPER, COCKTAILS! 
Sunday, September 25th, 6-9pm

Please join the 2016 RPC Host Committee at the EIGHTH annual 
Rock Paper Cocktails! to benefit INOVA Life with Cancer + Amy's Army

AT WESTWOOD COUNTRY CLUB
Heavy hors d'oeuvres and sweet treats
Two complimentary drink tickets and discounted cash bar
Complimentary non-alcoholic beverages.
Advance ticket sales for purchase only
Cash, checks, and credit accepted by all vendors.
Over a dozen local fine gift vendors will be on hand.

The evening will also feature raffle baskets and silent auction items.

Learm more and see  our amazing Vendors and Sponsors at RockPaperCocktails.com /center>




Friday, September 9, 2016

My SunGrubbies fashion show: Sun protective clothing still a success, despite Hermine!

Love this article about Michael B. Jordan's take on life with lupus, and his support for Selena Gomez. Mr. Jordan's mother suffers from lupus, and he gives a candid and spot-on interview about what lupus looks like and how it affects his mom. He does a great job of capturing the difficulties lupus presents its patients, and highlights how he, too, deals with the disease. I hope my children are able to describe the effects of my disease so accurately one day! Thank you, Mr. Jordan, for speaking out!

You can read the article here, but below are a few snippets that highlighted Mr. Jordan's intimate understanding of the effects of the disease:

“Just day-to-day routine and the most normal things are really hard to do when you’re not feeling well and your lupus is flaring up,” the Fantastic Four star told ET. “Every day can be a struggle.” 
Jordan also opened up about his own struggle of watching his mother deal with the illness after she was diagnosed in 2000, following complications with an operation on her knee.“When I was younger I didn’t understand it as much,” admitted the star, who is preparing for his upcoming role as Erik Killmonger in Black Panther. “As you get older, you really understand what’s what and the reality of the situation. Just coming to terms with the fact that she’s not healthy and there’s no cure for it is really hard. So you have to be extremely optimistic about finding a cure.”
“There’s also a feeling of helplessness,” he continued. “The most frustrating part for the family around somebody who has lupus is that you just want to do something to help, but there’s not a lot you can do.

Wednesday, September 7, 2016

Walk, don't run - Sage advice for lupus warriors ready to tackle the world

When I woke up yesterday, I thought to myself, "This is the first day of the rest of my life...barring unforeseen circumstances, of course." (Do those even happen anymore?!?)

This year marks the first year both my girls will be in school full time, as my second and sweet youngest daughter Bernadette started Kindergarten. I am now the mom of two school aged children. I drop them off in the morning, and I don't see them again until mid afternoon.  I. Can't. Believe. It.

So what am I going to do with my new-found time?

First, I'm looking forward to catching up. On everything. Work stuff, house stuff, personal projects, you name it. We all postpone projects over the summer, and now, it's time to get back to it. My sister-in-law tells me that I can jump start the process by reading, "You Are a Badass", by Jen Sincero. Apparently, it will give me the boost I need to just make things happen. Those items on my eternal to-do list better watch out! (Johnny claims there are things on his to-do list that have been there for 8 years. He always makes me feel better.)

Next, I'm going to resume a more consistent schedule of posting blogs. I love blogging - writing about lupus and the role it plays in my life can be so cathartic. I missed it over the summer, and I look forward to compiling the scribbles and post-its I have sprinkled around the house that say, "Blog post: XXX". I have stuff to say and a perfect venue in which to say it. Stay tuned!

I'm also looking forward to the fall season of the Pillbags. This is always a busy time for us, as we prep inventory for the holidays, line up our gift show schedule, and ramp up our presence on social media. Instagram has been a (very!) fun creative outlet, and I love dressing up the swanky pillbags to show how they can be used the way in which they were intended. Style! Fashion! Cuteness! Travel! Be sure to check us out here - @saraggorman.

I have big plans, I tell you. But I also...have lupus.

So while my to-do lists may look brighter, shiner, and more attractive (read: attainable) than ever, my need to stay healthy takes seniority. While my "free time" may technically start around 8am and go until 3pm, in reality, I have a very inflexible appointment with a nap every day around 1pm. Before then, I can chase as many to-do's as is considered safe and legal.

In an upcoming post, I'll share some of the strategies I'll employ to keep myself on track. A brand new handy Make-A-List note pad is among them. You won't want to miss it!