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.