May 12-12-12 Project: The Lesson

small plant coming out of the ground

Image: Sujin Jetkasettakorn

 

This month really impressed upon me the importance of self awareness. In my own experience, I can share that looking within and challenging myself with difficult questions is what helped me move toward acceptance.

This months project member Sara Gorman leaves us with a beautiful lesson.

I will mention a phrase in my book. It’s a little kind of a poem that I came up with that a lot of people have been able to identify with.

The harder I push, the sicker I get. The sicker I get, the less I resemble myself. The less I resemble myself, the harder I push to regain some semblance of who I used to be.

The point is you’ve got to break that cycle. You’re in control…It starts within. It really does. You have to make up your mind that the way you’re doing it right now, pushing through the pain, isn’t working – or it’s not working as well as it should.

Much love,
Marissa

Podcast: May 12-12-12 Project Member Sara Gorman

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It’s a blessing when someone alters your perspective in a positive direction. This month’s project member Sara Gorman did just that!  Thank you Sara for being open and sharing how to live well with a chronic illness! 

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* During the interview, I had an off-the-cuff moment which lead to a hidden surprise offer! 

Much love,
Marissa

A Book I Wish I Had In My Arsenal 5 years ago!

Front Cover of book Despite Lupus: How to live well with a chronic illness.

Have you read a book so inline with your experience that you began to markup every page? I have dismantled my copy of project 12-12-12 member Sara Gorman’s book, Despite Lupus: How to live well with a chronic illness. This book will force you to stop and evaluate your thoughts and approach to living with a chronic illness. The book is focused on lupus; however, I found the book inline with my chronic illness experience. Heck, the book got me to start taking a daily nap. That extra daily nap is giving me additional energy that I so desperately need! I highly recommend this book.

Much love,
Marissa

Help Me Find a Pair of Water Shoes!

Babe and I were in the backyard taking in the sun. The pool looked exceptionally beautiful. It was hot outside, and the pool was glistening. I should be able to, dive in, and swim, right? Not so fast. I always seem to find myself perched at the edge of the shallow end of the pool feet submerged in the water. I swear there is a magnetic force in that pool water always tugging at me. Why do we want for things we can’t have?

I have been in the pool post vestibular disorder, but there is always a fear. The doctors warned me, never put my head underwater because I could drown. I understand that once I submerge my head underwater visual cues would be removed, and my visual orientation would be impaired. Also, the motion of the water brings unpleasant nausea and has triggered a vertigo spell or two.

Stairway To Swimming Pool

Image: FreeDigitalPhotos.net

Heck. Today I wanted to get into the pool. I even checked in with Siri to confirm the temperature outside. I was stalling. Gotta love smart phones! I finally stumbled across a post that stated 80 degrees outside is considered prime swim weather. As fate would have it, Siri had already alerted it was 81 degrees. I proclaimed my desire to get into the water, and Babe didn’t discourage me.

Next thing you know I was in the water. Pants, shirt, bra and undies. I didn’t care; I was in! It was freezing and I considered jumping out. Glad I didn’t give up. I was forced to stay in the shallow end! My movement began to stir the water into a forceful motion, and I started to feel yucky. I wasn’t ready to throw in the towel just yet. I elected to hold onto the edge of the pool and look away from the water. Did I tell you, I have not physically ran in 7 years? Running can be a trigger that  provokes dizziness and vertigo. I then started running in place. Before I could wrap my head around what was happening, I yelled out, ” I am running!”. I turned to look at babe, and I was greeted with a huge smile. I then asked babe to set the stopwatch and time me. “Set it for 10 minutes!” Once again he didn’t discourage me. He set the timer and I started running in place holding onto that edge. I pulled my hands away from the edge, and the buoyancy of the water held me in place. I screamed again, “I am running”! It was quickly realized I wasn’t going to make the 10 desired minutes. Babe yelled out, “How about we shoot for 2 minutes?” My reply, “What about 3?”. I made it to 2 minutes, and I fizzled out. But who the heck cares. I ran! I ran for the first time in 7 years. It may not have been in the traditional form, but it was my way, on my own terms!

Babe asked me to hold onto the shallow edge while he went to retrieve a towel. I had an opportunity to be alone to think about what I had just accomplished. I began to feel motion sickness as the water shifted me about. Babe hustled back and helped me out of the pool. The weight of the wet clothes felt tremendous. That weight represented the heavy burden this disorder has placed on my life. Babe started to wrap the towel around me, and I hugged him close and began to cry. He held me tight and said, “I am so proud of you.” I am proud of us. We have been in this battle together for 7 years, and we may not win every battle, but we will win the war!

Much love,
Marissa

Getting Ready For Put On Purple Friday!

 Research shows that most Americans know little or nothing about lupus and its devastating impact on millions of people.

I look forward to joining thousands nationwide for Put On Purple Day on Friday, May 18, 2012.

Put on purple banner

Thank you to my future father-in-law for helping me get my sticks purpled out! It was an opportunity to bond and spread awareness!

Getting ready for Put On Purple day

Thank you GingerPixel.com ! That is where I found this great storyboard template.

Here, are a few facts via Lupus.org:

The causes of lupus are unknown; however, scientists believe hormones, genetics (heredity), and environmental factors are involved — more research is needed to better understand the role of these factors in people with lupus.

No two cases of lupus are alike. Symptoms can range from mild to life-threatening including everything from skin rash to severe organ damage.

Early diagnosis is crucial to preventing long-term consequences of the disease. If you notice signs or symptoms of lupus, be sure to engage your doctor and ask questions.

*If you can join in, please don’t hesitate to share with me your POP pics!

Much love,
Marissa

Raise5: Screw Business As Usual. Follow Up

I reached out last month asking you to consider voting for the creative, fundraising, platform known as Raise5.  Raise5 was invited to compete in the Virgin Unite’s contest- ‘Screw Business As Usual’.

Guess what? Raise5 won!

Did you take the time to vote for Raise5? I am sending you a virtual High5(deep down I think I have always wanted to say that)!

Be sure to check out the awesome #SBAU Raise5 entry video!

*Heads up vestibular community,  video contains rotational movement.

And don’t forget to turn your talents into donations!

Much love,
Marissa

Need a stylish way to carry your medication?

I want you to stop reading this post and go grab your pillbox, pill bag, prescription bottles, ziplock bag, trash bag; you get my drift ! This months May 12-12-12 project member Sara Gorman has come up with a beautiful alternative to clunky, plastic, pill boxes, and bottles.

Many of you, just like I used to be, are beholden to a clunky, plastic pill box to carry your pills.  And if you’re not (yet!), you know someone who is. But couldn’t there be a better way to organize and tote pills? At least, a more fashionable way that doesn’t include plastic? Most importantly, couldn’t there be an organizer that doesn’t scream “I’m sick” when you pull it out to use it?

I want you to toss those dingy, boring, pill boxes and containers aside and start rocking a beautiful Pillfold! What’s a Pillfold?

Sara Gorman pillfold

The Pillfold is a fun, fashionable new way to carry your vitamins and medication.

I understand those prescription bottles have pertinent information on them and you are not ready to throw them away. No worries, Sarah offers a Pillpouch.

Sara Gorman PillPouch

The Pillpouch makes toting and storing your medicine bottles simple and easy. Featuring six elastic bands and a special-drawstring design, this cute little number is just the thing to keep your prescription bottles organized, stowed, and at the ready.

Did I mention:

5% of every Pillbag sold goes to a Lupus charity. Join our quest to raise $1,000,000!

Let’s support Sara by heading over to her website and support her project:  Bringing a dose of style™

Much love,
Marissa

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