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Friday
Nov232012

Flying my flag.

Fluffy purple fleece with white and purple lettering that reads "Lupus Awareness is Fun!" the design is simple and clear.  I would carry my flag proudly at the Alliance for Lupus Research "Walk with Us to Cure Lupus" events that I attend from coast to coast.  I produce the flag as a blanket as well, on that could offer support to members of the lupus community.  The purple fleece is warm and embracing and whether flying as a flag or covering a "lupie" at home, there is strength in sharing that "Lupus Awareness is Fun!"

(Alternate Prompt: Create a flag for your health community.  Blog for Day 23 WEGO Health's National Health Blog Post Month)

Thursday
Nov222012

Thankful for my teams!

I am thankful for my teams.  Being a part of a team is important.  Supporting my teams gives me the feeling that I am making a small difference in the results of the game.  Whether the game is curing lupus or professional football, I am on the same team as Woody Johnson.  Woody Johnson is dedicated to winning--whether he is supporting a political candidate, leading the path to a cure for lupus or on the sidelines guiding his team (he owns the New York Jets!)  Happy Thanksgiving.   

 Smiles are contagious, lupus is not.  Imagine the smile I had when my husband handed me a Thanksgiving present by handing me the New York Times this morning.

An article on the cover page of the sports section is about Woody and his two favorite sports: football and politics.  The article demonstrated why I am thankful to Woody Johnson and his passion for winning.  As Kenneth Farber said, "What I know is that Woody has three passions: curing lupus, having the Jets win the Super Bowl and his commitment to the Romney campaign."  Woody's daughter Jaime has lupus.  

http://www.nytimes.com/2012/11/22/sports/football/jets-owner-woody-johnson-balances-football-and-politics.html?partner=rss&emc=rss&_r=0

Woody is founder and chairman of the board for the Alliance for Lupus Research @Alliance4Lupus and http://lupusresearch.org/ My cat is also my coach...

If you've followed my blog, you already know that my cat is named after the New York Jets Coach - Rex Ryan - and I am grateful that Rex Ryan the cat, who was a shelter cat , has become a member of my family and a vital part of my "home team".   Coaching and coxing me to get out of bed and find my "Lupus Style".  He is the perfect cheerleader and is my own personal "Flight Crew", helping me to rise above lupus and soar.

Here's a picture of me on the field at MetLife Staidum in May at the Alliance for Lupus Research "Walk with Us to Cure Lupus" event cheering with members of the New York Jets "Flight Crew" -- passion collison!

The "Flight Crew" dancing without me.

As I have said before, passion is contagious, lupus is not.  Thank you for letting my share my passion for my teams with you.  Happy Thanksgiving! Let's Go J-E-T-S!  Find your gratitude and enjoy it.

Wednesday
Nov212012

New Technology Improves Lupus Patient Care!

Imagine there is groundbreaking technology that is patient-friendly and encourages Health Care Practioners to connect with online with their patients between visits.  My idea for Day 19 of WEGO Health's National Health Blog Post Month is to have big pharma and/or the insurance companies provide incentives (new computers, complementary training and financial encouragement) to entice Doctors and HCPs to connect with their patients using the new connection/technology.   
When patients get involved and are included in their health care treatment, it will likely lead to improved health, when the patient and doctor work together collaborate to manage and treat symptoms as they arise.  Using the internet and application of this new technology, I believe that improving communication among patients and their doctors will reduce the need for unnecessary office visits, reducing workload making the HCPs office more productive and effective.  This new technology could be a game-changer.
While there are (more than) a few companies creating new technologies to support health care and the health care systems between insurance companies and HCPs.  If I was creating a new technology I would concentrate on developing an intergrative approach that connects the patients with their physician.  There are currently some apps that patients can use to monitor their health but I believe that there is a place in the market for an improved, comprehensive application that patients could use to participate in their health care treatment and plan, one that could link directly with their doctor when warranted.  
My idea may not be on par with what LabCorp has planned as they partner with molecular diagnostics firm XDx to develop a new diagnostic for lupus flares.  "LabCorp will work with XDx to develop a biomarker and commercialize a test for the flares — extended periods of activity for the autoimmune disease. Lupus causes the body’s immune system to attack its own tissues, which leads to inflammation and organ damage."  "The challenge doctors face is treating lupus flares in a way that the treatment does not cause the patient long-term damage. A new diagnostic to predict lupus flares could help doctors manage treatment." From the company websites...  http://www.xdx.com/ https://www.labcorp.com/wps/portal/ 

Knowing that technology companies are working to help improve the Quality of Life in patients is important and provides hope to those like me who live with lupus.  One day, some day... I hope that patients and doctors will use technology to connect with one another in between visits and encourage collaboration in the health care process.

Tuesday
Nov202012

The path to wellness...

I support whatever works.  If it works for me... The path to wellness and journey to discovering what works doesn't happen overnight.  Finding the right "alternative" practioner and combination of therapies should always be discussed openly with your physician and my claims are just that.  My claims, these three treatment options have worked for me.  This is a look into three things in my medicine cabinet.  Day 20 for WEGO Health 2012's National Health Blog Post Month...

Blockbuster! Boom. Pow! This is a "wonderful" dietary supplement that has changed my daily routine and improved my Quality of Life.  The chronic joint pain isn't completely gone but the days when I experience intractable pain are fewer.  I know how I felt before my alternative pain management physician suggested these and how I feel now... the difference is Blockbuster. http://goodhealthusa.com/products/Blockbuster1C/

Time to breathe and step into the treatment room with Dr. Jill Harrison.  Her website will give you the details but let me share the benefits I've experienced.  After a session of acupuncture, I feel better.  On the pain scale, the numbers go down.  On the mood scale, the numbers go up.  Isn't that all anyone living with a chronic condition wants?  Pain down, mood up.  It is want I wanted and have achieved with the help of Joyful Life Healing.

thumbnail http://www.joyfullifehealing.com/

Dr. Jill gives me much more than needles... her acupuncture sessions often transform and become consciousness-raising workshops.  In addition to using a weekly "session of needles" I also have started taking traditional Chinses medicinal herbs.  Every session is different and address the issues that are present at the time.  So many think it is crazy but millions of healthy Chinese can't be wrong.  All I know is that acupuncture treatments with Dr. Jill Harrison, and taking the Chinese herbs that she prescribes work for me.  My Rhuemie likes it, the results are in.   Believe it or not?  I believe that my acupuncture sessions have helped me find my "flair" while finding a balance with my mental, physical and emotional well-being.

Pain is a part of living with lupus, joint pain is often the most prevalent presenting issue so when my physician suggest I start taking Omega XL I did.  He knows I hate large "horse pill" fish oil pills and the yucky, disgusting "fish burps" but he knows I need my Omega Oils for my health.  The tiny Omega XL capsules are rich in Omega oils from the green-lipped mussel of New Zealand.  There is no fishy after taste and the timy capsules have helped my numbers - on the pain scale and in lab tests, the results are in.  Omega XL works for me, I am so passionate about this tiny formula that I should be featured in one of their infomercials.  Read all about it and decide for yourself.  If you decide to try Omega XL and order, tell them I sent you... (Amanda Greene of Culver City, CA 90230)  Sharing is caring, the best referral is when you refer a friend. http://www.omegaxl.com/Omega 3 Super Oil Supplement - Try OMEGA XL Risk FREE for 90 Days!

Three is a magic number and these three "secrets" of my arsenal have been revealed.  They support me and I support them.  If you want to experience the power of my support team feel free to try and see for yourself.  It is healing to go on a different journey to wellness.  After all, we are each unique individuals, shouldn't our treatment plans be as well. Hocus Pocus! Abracadabra! Whatever works... if it works for you it is a wonder drug.  A wonderful drug... that is.

Monday
Nov192012

Regina Holliday's "The Walking Gallery" and "Little Mirrors of Light"

Have you ever been moved by art? Have you ever seen art move?  Have you ever been a part of the movement?  I have.  Thanks to Regina Holliday, I am now a part of "The Walking Gallery" ~ I got my jacket today.  Perfectly timed for Day 19 of WEGO Health's 2012 National Health Blog Post Month... today's prompt "questions I have for other patients"

Would you send a blazer to an artist so she could paint your health story on the back?  I did just that. Thanks to Tiffany Peterson @TiffanyAndLupus for linking me to Regina, "The Walking Gallery" and the "Partnership with Patients" which led me to participate in the "Cinderblocks" conference in Kansas City earlier this Fall.  My jacket is # 206 also known as "Little Mirrors of Light" I can not describe how it feels to see the art that Regina created and I inspired.  My attempts to describe the feeling of seeing my blazer for the first time are not working.  I was touched, moved and stirred by the beauty.  My jacket wasn't ready so I wore a borrowed jacket from Regina during "The Walking Gallery" gathering in Kansas City.

Here is the link to the post where Regina Holliday @ReginaHolliday on Twitter explains the creative inspiration for "The Walking Gallery" http://reginaholliday.blogspot.com/2011/04/walking-gallery.html Here is Dr. Ann Becker Schutte 's post about "Why she walks" http://www.drannbeckerschutte.com/2012/09/the-walking-gallery-of-healthcare-why-i-walk/

There are many questions, I would like to ask of other patients but the one I am inclined to ask tonight as I write this post is... would you like to join me in "The Walking Gallery"?  It is as easy as shopping your closet and sending a blazer to DC and having Regina (and the patience as a patient) paint your story on the back of your jacket.  I look forward to wearing my blazer to conferences where I won't have to say a word because my jacket does the talking and the walking.