April 12-12-12 Project: The Lesson

small plant coming out of the groundImage: Sujin Jetkasettakorn 

 

Can you image living with an undiagnosed condition for 24 years. Believing that you may be going mad and that the symptoms you have been carrying have been dismissed time and again. April’s 12-12-12 project member Rhiann Johns has been living that exact health story.

I was blessed to have an opportunity to interview Rhiann and her wonderful mother Hilary. Important lessons have been revealed along this interesting journey.

 Mother does know best. I suppose I picked out things early on, nagging at the back of my mind, when she was born. I should have listened more. As I said, mother does know best.

Trust in your instincts and our own bodies. I think we all know when there’s something going on with our bodies. Be more assertive with doctors. Push more for being referred to testing and for getting a diagnosis.

Thank you Rhiann and Hilary for opening up and giving us lessons that will plant seeds and help us all continue to grow.

 

Much love,
Marissa

Podcast: February 12-12-12 Project Member Kim M.

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12-12-12 project member Kim M. From Hope Whispers Podcast interview featuring 12-12-12 project member Kim M.

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About Kim:

Kim was born and raised on a tiny island in Pacific Ocean.  Kwajalein was her home until she graduated from High School in 2000.  She spent the next 5 years working at Walt Disney Worlds Animal Kingdom.  Married her high school sweetheart in 04 and entered the world of motherhood the next year.  Kim’s greatest blessing is her family.  Now a mother of 2 boys parenting is a challenge she enjoys.  She began her love affair with photography shortly after her first son was born.  She loves nature and all things outdoors.  She loves life and tries her best to live each day to the fullest!  She started the blog, Hope Whispers, where she documents living with a rare liver disease.

Condition: Budd-Chiari Syndrome

According to The Merck Manual:

“Budd-Chiari syndrome is caused by blood clots that completely or partially block the large veins that carry blood from the liver (hepatic veins) into the inferior vena cave.”

Connect with Kim:

Twitter: @KMunoz28
Blog: http://kmunozbcs.blogspot.com/

Support Kim:

Help Kim raise much needed funds for her liver transplant. Show your support for Kim by rocking Hope4Kim products. Proceeds will go towards Kim’s transplant fund!

Learn more about Budd-Chiari Syndrome, Liver Disease, Organ Donation:

Budd-Chiari

Liver Disease

Organ Donation

Be sure to check out Kim’s fantastic blog Hope Whispers to learn what it’s like living with Budd-Chiari Syndrome.

Much love,
Marissa

 

Audio Transcript: 

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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

Podcast: January 12-12-12 Project Member Blake Watson

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Image of Blake Watson from ihatestairs.orgPodcast interview featuring 12-12-12 project member Blake Watson

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 About Blake:

Blake is a self identified computer nerd. He has a passion for designing websites which he exercises by doing freelance and volunteer projects. He has a long-standing love affair with WordPress. Blake holds a BBA in Business Information Systems and an MBA, both from Mississippi State University. On a more personal level, Blake likes to write. He dissects the ups and downs of life with a disability on his personal blog. Blake believes that God has blessed him and is thankful for his family, friends, and community that have made his life fulfilling.

Condition:  Spinal Muscular Atrophy (SMA) Type 2

SMA is a genetic neuromuscular disease. The disease manifests as muscle atrophy and severe weakness, resulting in a loss of common functions like walking, standing, dressing oneself, feeding oneself, etc. SMA is a progressive condition, meaning it gets worse over time. The severest form of SMA, Type 1, kills more babies than any other genetic disease.

Connect with Blake:

Twitter: blakewatson
Blog:ihatestairs.org

Learn more about Spinal Muscular Atrophy (SMA)

To learn more about Spinal Muscular Atrophy (SMA) please visit the fantastic website, Stop SMA, designed by Blake Watson.

Much love,
Marissa

 

Audio Transcription:

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2 Pieces Of Tape = Better Quality Of Life?

Marissa with tape on glasses

Ok, so I am walking around this holiday season with two pieces of tape on the inner part of my glasses. This is called Binasal Occlusion. My neuro eye doctor believes this will open up my visual field. The vestibular disorder has caused me to see the world in tunnel vision. I often look down when walking. With the prisms, I am walking more upright. With the addition of tape to the glasses, I am not bumping into as many things around the house as usual. It’s looking like I will have to wear the tape a few more months. Can two pieces of clear tape equal a better quality of life? Time will tell!

So, if you see a guy or gal on the street walking around with two clear pieces of tape on their glasses, pass a compliment or smile! I know I could sure use a little reassurance when out and about. I have been a bit self conscious these past few days, hoping the insecurity will pass.

Much love,
Marissa

Reflection, Nomination, Idea, Execution

2011  calendar page turned up to show the new year 2012Image: dream designs / FreeDigitalPhotos.net

Intro:

Living with a chronic vestibular disorder, I am reminded daily that I am living with a life altering condition. That daily reminder fuels this blog. It encourages me to find ways to become a better version of myself despite this disorder.

Nomination:

I was recently nominated for the WEGO Health Activist Awards Best Kept Secret. I feel blessed and humbled that someone in my community cast a vote for my nomination (Be sure to nominate your Health Activist Best Kept Secret).

After reviewing the list of nominees, I was taken aback. There are so many wonderful people living with and supporting awareness of various health conditions and disorders.

Idea:

For a moment, I found myself lost in another person’s story and passion. After reading several nominees blogs, I had a thought. Could a shift in focus away from vestibular struggles help me through my vestibular struggles? Educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition.

I currently attend 3 doctors visits monthly  These visits make me nervous. I realize vestibular disorders are complex, and in 6 years, I have yet to find a “cure.”! I realize that with each visit, therapy, adjustment, and exam that doesn’t deliver a “cure”, my options are narrowing.

Despite my supportive network, at times I feel alone. What would it feel like to be reminded that I am not alone? To be reminded that there are others in the struggle, and despite their conditions, they are moving in a positive direction.

Execution:

* In 2012, I would like to educate myself monthly on a health condition other than my own.

* I will purchase a T-Shirt monthly supporting a disorder/condition/cause. I will wear that T-Shirt to my 3 doctors visits each month.

* I would like to hold an interview and highlight a disorder/condition/cause each month on Abledis.com.

How can you help? :

If there is a condition or a disorder I should know about, please alert me!

Final thoughts:

2011 has been a year of change and growth. Thank you Lord for your many blessings. I am blessed for the addition of wonderful people that have come into my life this year.  Thank you to my fiance and his family for their unwavering love. Thank you to my family for their support. Special thanks to my gram. Gram you are an inspiration and blessing. Thank you to the doctors that are mentoring and helping me find answers. For the first time since being diagnosed with a vestibular disorder, I am actually welcoming a New Year. Cheers to 2012!

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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More Than A Work Badge?

What are we holding onto that is keeping us from moving in a forward direction?       (Audio to come)

Marissa's work badge pre-disabilty I have gone through and thrown away pre-disability career memorabilia. From binders to pay-stubs I have purged myself of physical work memories, however, I have been unable to throw away my work badge. Pre-disability and post-disability are in a power struggle. Letting this work badge go and standing in my current truth is scary. Am I ready to let go and address the fear in letting go?

*Please excuse the raw photo. This poor badge has taken a beating!

Much love,
Marissa

We Fight

We fight to be cared for.
We fight for independence.
We fight for grades.
We fight for love.
We fight ourselves.
We fight each other.
We fight to be understood.
We fight for acceptance.
We fight for what’s right.
We fight to fight.
We fight for employment.
We fight when we’re unemployed.
We fight to keep our homes.
We fight to save our marriages.
We fight to save our relationships.
We fight for quality of life.
We fight systems.
We fight for equality.
We fight to be heard.
We fight for respect.

We are good at the fight, but when do we learn to surrender?

Caring For The Caregiver/Caretaker Audio

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Excited to be sharing with you podcast #2. This podcast will focus on gratitude for caregivers/caretakers in my life and the lessons they have taught me….

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Much love,
Marissa