Surviving Christmas with MS

I found this from 2013 and it’s reminding me of some very important points in life. 

What a wonderful week of family, friends and the foes of MS. Yes, wonderful even with the nagging MS stuff going on: The emotional roller coaster, the fatigue, the foggy brain. Not to mention clumsy foot, balance issues leading to a broken toe. But despite all the MS foes, this was a grand Holiday.
While I love Santa and the stocking he provides, it's often the intangible gifts that mean so much during the holidays. The gift of life, of friends, of family. Even if our family is just one other person, or that most of our friends are acquaintances on Twitter, we do have a family.
My morning chat from Christmas Morning:
Yesterday included some great food with me grilling a wonderful piece of beef tenderloin from Sprouts market. Love their meat! Grandma made all the fixings and family helped with the dishes. Girl with MS had to take several rests during the day. By now my young nephews understand when "Auntie Nonnie" needs an MS break.
This is a family full of converse shoes, time outside and basketball. Go Lakers! Go Clippers!

Gifts came in all forms. Here is the Day of the dead doggie in honor of all of our lost hounds.
We did it! The emotional roller coaster has subdued. Gifts exchanged. Tears of joy and love shared. Frustrations as well, but all in all a Cherry Merry Christmas.

a New Year, a New Blood Test and 2 MS Companies making a difference.

thrive
Happy New Year!   (well, almost)

2017 was amazing in so many ways but after these holidays I definitely need to get back on track.  Late nights, rich food, more drinks and desserts...my body began to rebel.   It just about quit on me yesterday.  Maybe it did.

Two pm, and helping mom with yet another holiday function and finally found myself crashed out on the bed.  Been a beautiful but long holiday!

We kicked off December going to Nashville, Tennessee to learn more about iQuity's blood test to help diagnose multiple sclerosis.  Click here for my article about this blood test called isolateMS.  This is definitely company to keep an eye on in the future.  The blood test is already helping some patients with their diagnoses.  It could be an effective alternative to MRI's and anyone who's had an MRI knows how uncomfortable it can be.

iQuity Advisory Board

iQuity Advisory Board

Caroline Craven (www.GirlWithMS.com)
Kathy Reagan Young (www.FUMSnow.com)
Cat Stappas (www.ItsOnlyABruise.com)
Beth Prystowsky (www.ModernDayMS.com)
Stephanie Buxhoeveden (www.JustKeepSmyelin.com)
Matt Cavallo (www.MattCavallo.com)
Dan and Jennifer Digmann (www.DanandJenniferDigmann.com)
Laura Kolaczkowski (www.insidemystory.com)


Kim Standard, Caroline Craven, Jennifer Digmann
There were ten of us MS bloggers in Nashville and it was awesome to connect and meet in person! We ended up at the Grand Ol' Opry after a good day of brainstorming, sharing and learning.

The next week found us in Boston, Massachusetts.  This trip we worked with EMD Serono and their activities helping MS patients live better.   It snowed on us and we got to experience an almost white Christmas!
Enjoying Boston with some of the EMD Serono MS team!
It's really amazing and wonderful to feel the connection between medicine and quality of life.  These two companies understand that this is important.  I appreciate this greatly.

Caroline Craven and Carolyn Kaufman - from Without the Weight.  
So much appreciation and gratitude as 2017 comes to an end.   GWMS was active in many great programs this past year to help others with MS live a better life.  AND I met the man of my life who has been the most wonderful support system imagined.   This is good for Girl with MS.  Oh so very good for GWMS.

As the holidays come to an end, my body is ready for cleansing and reflection.  For movement and for routine.  The rich foods and excess alcohol was felt in every muscle and nerve.  I also indulged in some cigarettes which I know are terrible for us - but tasted good at the time.  And the coffee/caffeine consumption was nearing epic proportions.

But the binge/festivities are over and easily my body, mind and spirit slide back into a healthy routine.  Today I'm sipping royal chrysanthemum tea.  Yesterday my cup was full of "pitta" tea to help reduce heat and inflammation, followed by some fruity Acai berry tea full of anti-oxidants.  And it has the most beautiful bright blue flowers in it.  Violet blue.

Today I am working on an exciting project for Self Care Catalysts.  This is another company that is making a difference in the lives of MS patients.  They have launched an app called My Health Storylines in addition to starting the Self Care Movement:  #selfcaremvmt

They understand that patients want to take control over their wellness and they are doing something about it!

Their homepage says it all:

Mabel and Caroline Craven,
@thegirlwithms

HEALTH INNOVATION BEGINS WITH ME

UNDERSTANDING CHRONIC ILLNESS THROUGH SELF CARE, STORYTELLING, DATA, AND INSIGHT TO IMPACT HEALTH OUTCOMES.

It's that whole, "Begins with Me" that knocks it out of the park.  So true.  We are only as good as our actions.

As many of you know, my whole gig is about creating our own wellness, about self-care.  Now this does not mean you abandon all medicines or disease treatments.  Self-care is about the big picture.  The whole enchilada.   The wholistic approach.  this includes nutrition, exercise, mindfulness, medicines, and all things consumed and ingested as healing treatments.

I'm working on some challenges for the coming year.  Weekly resolutions that can be done in five days to help guide us into a healthier 2018...

Watch this spot - more to come.

and #takeTHATms!





Join an MS study from the comfort of home. Receive $50 for your time.

Are you interested in helping advance research for MS but don’t know where to start? You’re not alone. Taking part in a research study for MS can seem overwhelming, but it doesn’t have to be.


A new at-home study called EMPOWER (Evaluating Multiple Sclerosis Patients ShOWing A GEnomic Signature of Therapy Response) is seeking volunteers with MS nationwide to better understand how MS affects the body. The goal of the study is to develop a blood test to help monitor disease activity and treatment response for people diagnosed with MS. The study is being conducted by DxTerity, a genomics company developing tests to better manage autoimmune diseases.

If you’re 18 years of age or older and have been diagnosed with MS (any type), you qualify.


Why Should I Take Part?
EMPOWER is an at-home study that can be completed in your free time. All you need to do is sign up online and a study kit will be mailed to your home.



What’s Next?
Follow the instructions in the fingerstick blood collection kit to collect a few drops of your blood (much like at-home glucose monitoring). Mail your sample to the research lab using the prepaid envelope.

When you’re done, log in to the secure study portal and complete a short survey online. You will be compensated $50 for your complete study participation, which you can keep or tell DxTerity donate to an MS charity of your choice. That’s it!

Ready to make a difference in MS research? I know I am. Click here to get started.