Team Amy

Part of the letter I sent out:

The day after getting this bracelet please wear it for the duration of the day. Throughout your normal daily activities you may be reminded that you are wearing an awareness bracelet. When you think of the bracelet think of Amy and the approximately 2.5 million people across the world that are living with a condition that is attacking their body. MS is a condition, which affects quality of life and often hinders the ability to participate.  Please take a photo of you rocking your awareness bracelet. It can be you in an action shot.  You have free reign. Just know that your photo will be added online to the blog. This show of support and solidarity for Amy and others living with MS is a way for us to contribute and bring awareness to this illness. Thank you again for participating!

Individuals wearing MS awareness bracelet in support of Amy and MS awarness

(Heather, Michelle, Kim, Julie, Ava, Veronica,Blake)

Thank you to those that answered the call and rocked an MS awareness bracelet. You are appreciated!

Much love,
Marissa

March 12-12-12 Project: The Lesson

I have spent this month learning about Multiple Sclerosis. I have gained a great appreciation for those afflicted with this condition. The strength that one must muster to handle the continuos changing nature of this condition is admirable. I was blessed to interview a fierce advocate in Amy Gurowitz.

Amy shared an important lesson this month. You don’t know what you can deal with until you do.

In 1988, I looked at that list and I thought, “Oh my God, I’m never going to be able to deal with this.” Years later when I looked back at that list, I thought, “Oh my gosh, I’ve dealt with pretty much all these things in some fashion or another, and…wow! I never knew I could do it.”

You just never know what life is going to hand you, and what you can deal with. That’s really empowering, I think, in the long run – to know that you can cope with far more than you thought you could.

 

Thank you Amy for being open to sharing your life and experience living with MS! I admire you and I am blessed our lives crossed paths.

 

Much love,
Marissa

Podcast: March 12-12-12 Project Member Amy Gurowitz

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Excited to bring to you this months podcast.

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Audio(download) Transcript

Much love,
Marissa

MS, You’re Never Gonna Win!

12-12-12 project member Amy Gurowitz daughter Madeline wrote and composed a song about Amy and their lives with MS.

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.

Madeline, you have a beautiful voice and spirit. You are right “Ms, you’re never gonna win”!

Much love,
Marissa

12-12-12 Project March Photo Collage

This collage of photos was taken at my Chiro appointment. I am rocking a National MS Society shirt and awareness bracelet. Be sure to check out the National MS Society website to learn about getting involved.

chiro_appt_march_ms

 

I am going to feel a great amount of comfort rocking this shirt again later on in the week. I start vestibular (balance) therapy and knowing that there are others fighting and supporting chronic illness makes this journey feel more manageable.

Educational Resources Uncovered: Multiple Sclerosis

This months 12-12-12 project is focused on learning about Multiple Sclerosis. I wanted to make sure I shared the fantastic resources uncovered during this educational journey.

 

Recommendations from March project member Amy Gurowitz :

NationalMSSociety 

HealthCentral (Amy writes for them!)

MedHelp 

Stu’s Views & M.S. News

WebMD 

 

Additional recommendations I uncovered in my search:

100 Questions & Answers About Multiple Sclerosis, Second Edition (book)

MedicalCriteria

MSAA

Multiple Sclerosis Foundation

 

Twitter accounts I am  following:

Amy Gurowitz @mssoftserve

Positive Living-MS @PLwithMS

National MS Society @mssociety

MS Association of America @MSassociation

MSF @MS_Focus

 

* Don’t hesitate to contact me if you would like to add a valuable resource.

 

Much love,
Marissa

 

Participating in #SXSW (update)

Often times life’s negative events and interactions are set on repeat, recycled, replayed, and picked apart for analysis. I want to rewind and replay the kindness I have been extended over the last few weeks. I mentioned Veronica Johnson in a recent blog post. I talked about how she attended an interactive conference known as SXSW. I expressed because of my vestibular issues I most likely would not be able to participate.

Veronica e-mailed daily giving me a play by play of what was taking place at the event. It was like I had my very own news correspondent at the conference. She also shipped me a box filled with swag from the conference!

Let me share the events. I had a rough day and felt a bit down. I even cried on babe’s shoulder. I felt a bit lost and unsure of the future. I let out a good cry and then babe reminded me that I had a package to open. I opened up the package and wow! I felt rejuvenated. Veronica’s act of kindness reminded me the importance of staying in positive moments. I am going to continue to have lows and high’s throughout life. With that said I realize that blessings come from above, and there is a purpose and plan being carried out in my life.

SXSW swag: t-shirts, buttons, etc.

 

I want to thank Veronica for being the best gal ever. This gal is the real deal! Her act of kindness will continue to fuel me to strive to be the best version of myself.

Much love,
Marissa

Never Say Never? Participating in #SXSW

It is highly unlikely I could handle an interactive conference or festival. It may be a bit too much sensory overload. Shopping at Target or Walmart feels as if I am attending an interactive conference and festival!

Majority of the individuals I follow on Twitter, are from the web design community; therefore, my Twitter feed is currently full of #SXSW hashtags. I try and not entertain the idea of attending these events. I have come to accept the fact that I can not attend ; however, that does not discourage me from interacting. I comb the SXSW website and I click all of the #SXSW links that storm my Twitter feed. It makes me feel as if I am a participant.

What a thrill it was today checking my Twitter feed and seeing a tweet from Veronica Johnson. There was a Twitter photo of her holding up a t-shirt.

Veronica Johnson holding up mashable t-shirt at SXSW

 

Veronica picked me up some swag over at the Mashable booth! The crazy thing is I have never met or spoken directly with Veronica in person. We have connected via tweets, email,  and comments on the blog. She thought enough of me to include me in her #SXSW experience. Thank you Veronica Johnson for allowing me to participate through your journey! You are the best.

 

Much love,
Marissa

12-12-12 Project Observation Multiple Sclerosis

This has been an intriguing start to my educational journey learning about Multiple Sclerosis. I found myself disappointed with the limited information available while researching the rare liver disease Budd-Chiari Syndrome in February. I find myself currently overwhelmed by the plentiful and vast information available on MS. I am currently intentionally withholding using Amy’s educational concept MS SoftServe as an educational resource. I want to let myself experience the process of emerging within a plethora of information. This may allow me the ability to greater empathize with a family member, friend, significant other, in search of answers. I am beginning to realize that I can not find answers until I know what are the pertinent questions to ask. Already learning so many lessons.

Much love,
Marissa