30 Things I Needed to Hear Before I Got Sick-Life lessons learned

Life lessons I have learned a little late. Please don’t make the same mistake!

What’s your typical weekday look like?

If you are LUCKY ENOUGH to have a job in this economy, your averaging about 7.5 hours a day at work according to the American Time Use Survey.

Some of you are clocking a commute of 100+ miles round trip daily.

So let’s break down a possible scenario:

You get up at around 6:00 AM and put some sorta breakfast together. I won’t forget to mention your much needed morning cup of coffee.

You realize it’s too late to workout, so you head for the shower. Too tired to lay your clothes out the night before, so your fumbling around looking for something presentable to piece together.

Your hair has taken a bit longer to style than usual, so you slack on your makeup routine.

You know you shouldn’t put on those new high heels, because you haven’t had time to break them in, but you ignore your moment of SANITY.

DANG! You forget to pack your lunch. Oh well, your used to scrambling, grabbing a quick bite to eat during your 45 minute lunch break.

Fumbling around looking for your keys, you catch a glimpse of your purse and realize it doesn’t match the outfit you pieced together at the last minute. You don’t have time to mess with it. Your out the door hoping you grabbed everything needed to get through ANOTHER DAY.

You start the car to find you have a quarter tank of gas left. You say to yourself…“Figures!  I can’t be late again. My boss is going to kill me. I can’t get fired.”

You see where this is heading. Since the minute, this poor gal woke up the cards were stacked against her. She failed to finish before given the chance to start.

I am comfortable saying this scenario rings true for a great majority of individuals.

EACH DAY runs into the next, and you realize you are just another HAMSTER ON THE WHEEL OF LIFE!

This was a typical day for me before I got sick.  I was getting trampled by life, and I never questioned slowing down and checking in with myself.

 SO, if I got a chance to go back in time and speak with healthy Marissa, THIS is what I would say to her…

(If you are healthy and feeling a bit out of control, THIS ONE’S FOR YOU!)

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Did You Know May 10 is World Lupus Day?

World Lupus Day Header

Would you have known today is World Lupus Day? I personally admit I had no idea there was a World Lupus Day before the 12-12-12 project.  My introduction to lupus presented itself in my teenage years. My mom and I were sorting through old photos and a picture of her best friend sparked a memory.  It was then she shared that one of her best friends died from lupus. I immediately connected the word lupus to death.

The word lupus once again entered consciousness when my doctor suggested having me tested for the disease. I immediately was reminded of my moms best friend and I became scared. The initial test came back false-positive.

While most people with lupus test positive for ANA, medical conditions such as infections, other autoimmune diseases and false positives can also produce a positive test result. For this reason, your doctor may order some other blood tests to correctly diagnose SLE.

I was tested again and cleared. Lupus became a subject I did not think about again until the 12-12-12 project. When I went through a list of conditions I knew I had to explore lupus. I wanted to make sure I educated myself on a condition that had taken one of my mom’s best friends and became a personal concern.

With that said, I believe it’s important for me to alert everyone I  encounter that Today Is World Lupus Day! I encourage you to click the image below and sign the awareness pledge.

World Lupus Day Pledge

Please check out this beautiful video narrated by Julian Lennon as he talks about the legacy of his friend Lucy.

 

Much love,
Marissa

 

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

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

January 12-12-12 Project: The Lesson

January 2012 was an opportunity to set sail on a personal project known as 12 months, 12 journeys, 12 lessons. This month’s project featured a neuromuscular condition known as Spinal Muscular Atrophy. I had an opportunity to learn about the condition, obtaining a glimpse into the life of my friend Blake Watson living with SMA type 2. This month offered an abundance of lessons. It’s difficult to grab hold of just one lesson; there’s one that stands out. Allowing yourself permission to adapt to life’s challenges. Giving yourself time to grow, change, and readjust. Blake eloquently states in the interview.

“Having SMA is all about adapting. I just have to remember that. If something doesn’t work out, instead of just being like, “Well, this isn’t to work out,” I should probably just really creatively think of ways to adapt to make it workout I guess.”

I want to thank Blake Watson for being open to speaking about his personal journey living with SMA. I am blessed to be able to share his personal story with you. I am excited to welcome the months ahead.

Much love,
Marissa

More Than A Work Badge? (Audio)

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More Than A Work Badge? (Audio)

Written blog post referenced: More Than A Work Badge?

Standing in and embracing my truth!

Much love,
Marissa

 

Transcript of audio:

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Pay It Forward

The past two weeks I have been showered with kindness. I have received two packages in the mail.

Contents of package #1
From: Blake Watson
Inside package: Several web design books.
Info: Blake has a condition known as Spinal Muscular Atrophy and he has found that physically holding books has become a struggle. Blake prefers e-books. Blake is supportive of me learning web design and sending his web design books is a lovely gesture.

Collection of web design books blake sent me

Contents of package #2
From: Andy Clarke
Inside Package: New Riders and Lynda.com DVD’s.
Info: After hearing The Big Web Show Podcast, Andy contacted Jeffrey Zeldman asking for my contact info. Andy contacted me and asked for my mailing address. He was kind enough to send me some of his New Riders and Lynda.com DVD titles.

Andy Clarke DVD's he sent

Lesson Learned:
These kind men have offered me gifts of knowledge asking for nothing in return. They exemplify the term “Pay It Forward.” I felt it was important to share this story. Are there  gestures that you can pay it forward to members of your community? These men have taught me a powerful lesson. They didn’t ask if I needed help. I was provided a vehicle, so I can help myself. I can’t wait to pay it forward!

Much love,
Marissa

In Need Of A Good Habit, Or Two! (Update)

Man with hand on head standing at a sign with three arrows points 3 different directionsImage: David Castillo Dominici / FreeDigitalPhotos.net

 

30 days ago I set out to add three achievable healthy habits into my life. My 30 days are up and I have learned a great deal about myself.

 

Health Habit #1: Drink nothing but water for 30’s days.

Goal achieved: Yes

Challenges:  First few days I was in panic mode. It became clear that I was consuming very little water in my diet. I soon became parched. I wasn’t consciously transitioning to drinking water only. If I couldn’t drink soda, ice tea, or juice, I didn’t feel like drinking at all.  After the first week I began to feel really dehydrated and my quench for water kicked in. After the transition I became addicted to water.

 

Health Habit #2: No pastries, candies and ice cream for the next 30 days.

Goal achieved: Yes

Challenges: This was a much harder challenge then I had anticipated. Pre-challenge, I consumed a sweet daily. The first week I found  a lack of  sweets causing irritability.  I was not pressured by outside factors when it came to drinking water only. Yet, often bombarded by pressure to consume sweets, I almost caved in. The temptation throughout has been shocking. However, I feel this last week, the temptation has tapered off. People are expecting me to say no, therefore they are no longer suggesting.

 

Healthy Habit #3: Spend 20 minutes each day, for the next 30 days, sketching

Goal achieved: No

Challenges:  I have failed this healthy habit miserably.  With my condition this is not an area that I have much control over. There are days where the imbalance and dizziness is so strong and I can’t imagine staying still and sketching.

 

What I learned:

There are still aspects of my life that I can control. What I put into my body ultimately is my choice. This has been a true revelation for me. It has inspired a new passion within me to take on a healthier life style. I may not have the same control over my life as I did pre-disability, however,  I will work to make sure to appreciate and foster the aspects of my life I still have control over!

Much love,
Marissa