12-12-12 The Lesson: Life may go different than planned

I can’t imagine a world where people plan and prepare to get sick.

MOST OF US travel through life at the speed of a hamster on a wheel.

You become bombarded by the stresses of life and IF YOUR SELF AWARE you recognize the importance of slowing down and appreciating memorable moments.

When your life becomes derailed by an illness you may entertain the thought that LIFE IS OVER.

But this month’s 12-12-12 project member Sarah Levis reminds us to re-evaluate your “life is over,” thought process…

“Just because your life goes a different way than you planned, it doesn’t mean that it necessarily has to be worse than you planned.”

I hope that this is something that everybody can take something from. I think one of the things that I’ve learned most from what I’ve gone through is just because your life goes a different way than you planned, it doesn’t mean that it necessarily has to be worse than you planned. I definitely haven’t pictured everything that’s happened to me since the stroke happening, but there have certainly been many, many blessings in my life that have come as a direct result of meeting the people that I have, being in the places that I have – even having to live back in my home community, which I didn’t think would ever happen. It is what you make it.

Here, is the reality. Sarah has had two strokes before age 35. She is living with physical disabilities that stemmed from the stroke. She had to go through months of grueling rehabilitation to regain her independence and at the end of the day she still believes that LIFE IS WHAT YOU MAKE OF IT.

Much love,
Marissa

Podcast August 12-12-12 With Project Member Sarah Levis- Brain AVM

Play

This month’s 12-12-12 project medical podcast with Sarah Levis.

What type of mindset do you have to be in to get up each day, relearning how to walk, feed yourself, brush your teeth and learn to carry on after a brain arteriovenous malformation causes a stroke?

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

Download the audio

See the transcript

Sarah gives us a glimpse into her life and openly shares her medical story. Thank you Sarah for taking this journey with me. You are an awesome woman!

Much love,
Marissa

You Get News That An Old Friend From High School Just Had a Stroke

Emotions are racing and you move from shock, sadness, to concern.

Your NOT SURE EXACTLY what happens to the body when someone has a stroke, but you know enough to associate the word with a terrible medical event.

Majority of us would respond exactly the way I just detailed when hearing about MOST major medical events.

The word recovery ALMOST NEVER enters the mind. Fixation on the event itself set’s precedence, and we can’t fathom what a person going through a serious medical event endures after the onset.

A few major medical events and their possible recovery and treatment paths:

  • Cancer leading to chemotherapy treatment.
  • Stroke requiring open brain surgery leading to post-stroke rehabilitation.
  • Arthritis leading to infusion treatments.
  • Rare form of liver disease leading to transplant wait list. After transplant comes months of immunosuppressive medications to prevent the body from rejecting the new liver.
  • Vestibular(balance) disorder leading to balance retraining through vestibular rehabilitation.

These major medical events require treatment protocols in attempt to heal the body.

These recovery modalities are often times painful, emotionally devastating, scary, physically taxing, ongoing and are accompanied with a slew of other unpleasantries.

This months 12-12-12 project, learning about brain AVM, has had a lasting impact on me.

Project member Sarah had TWO STROKES before the age of 35, YET that’s not where her story ends. Sarah had to endure several months of rehabilitation to gain her independence.  She is left with daily physical reminders of the stroke.

SO when you hear that someone is going through a major medical event, find a way to support them beyond your initial shock. They are working to hold onto who they used to be while accepting the reality of a life that has been drastically altered.

Sarah shared with me an awesome blog called Hope Heals. The blog chronicles the life of a woman names Katherine Wolf and her message of hope after suffering from an arteriovenous malformation.

This video is the PERFECT example of how a major medical event can turn a person’s world upside down.

Much love,
Marissa

 

Marissa Trying To Understand Brain Arteriovenous Malformation (AVM)

Bare with me as I try to understand the complexities of brain arteriovenous malformation! I have been struggling connecting TWO medical terms lately.

Brain AVM thoughts on whiteboard

1. Hemorrhage: “an escape of blood from ruptured blood vessels.”

2. Stroke: ” A stroke is the sudden death of brain cells in a localized area due to inadequate blood flow.”

I COULD NOT MAKE THE CONNECTION between inadequate blood flow (stroke) with the escape of blood from ruptured blood vessels (hemorrhage).

I assumed that you could ONLY develop a stroke from a blood clot in the brain. I didn’t realize that a hemorrhage (or bleeding) of the brain could cause a stroke.

Did you know there were 4 main types of strokes?

Let me introduce you to one of the four…HEMORRHAGIC stroke.

The New York Times health guide offers an AWESOME BREAKDOWN of a hemorrhagic stroke.

What I understood is the brain is extremely sensitive to bleeding. The sensitivity causes the brain tissue to become irritated which leads to swelling and a myriad of symptoms.

It’s the brain arteriovenous malformation (AVM) that weakness the blood vessels. The pressure becomes so high that the blood vessels can burst. The burst causes bleeding into the brain which can lead to a hemorrhagic stroke.

“In about 50% of (AVM) patients the presentation is a sudden hemorrhage, or bleeding into the brain, a form of stroke.”

References:
http://avm.ucsf.edu/patient_info/WhatIsAnAVM/
http://www.taafonline.org/am_about.html
http://tinyurl.com/9ets5z2
http://medical-dictionary.thefreedictionary.com/stroke
http://www.webmd.com/brain/brain-hemorrhage-bleeding-causes-symptoms-treatments
http://health.nytimes.com/health/guides/disease/hemorrhagic-stroke/overview.html

Much love,
Marissa

P.S. Learning SO MUCH.  Back to my studies!

A Tangled Web Arteriovenous Malformation Weaves

When your arteries and veins abnormally tangle, a web of deceit begins brewing forming AVM nidus.

Shout out to Mayfield clinic for helping break down the complexities of arteriovenous malformation (AVM).

This is what I was able to understand…

It’s understood that blood flows from the heart, through your larger arteries to the body’s cells.

Arteries: Carry oxygen-rich blood away from the heart to the body’s cells

The arteries branch until they form into a capillary.

Capillary: Any of the branching blood vessels that form a network between the arterioles and venues.

A bed of capillaries is formed, and the powerful exchange of oxygen and nutrients takes place.

That blood travels away from the capillary bed back to the heart through your veins.

Veins: Return oxygen-depleted blood to the lungs and heart.

The AVM tangled web of blood vessels and arteries connect directly LEAVING OUT the critical capillary bed. So you get arteries that are in a feeding frenzy and enlarged veins form.

An AVM can rupture. The bleeding also can be held responsible for a possible stroke.

The risk of AVM bleeding is 2 to 3% per year. Death from the first hemorrhage is between 10 to 30%. Once a hemorrhage has occurred, the AVM is 9 times more likely to bleed again during the first year.

I found a GREAT VIDEO of Dr. John Hudson and Dr. Ted Larson giving a brief overview and discussion on AVM’s and treatment modality.

It’s 8 MINUTES OF SOLID AVM EDUCATION. Definitely worth a listen.

(Heads up: volume is low!)

Much love,
Marissa

Accessibility In Practice

How far would you be willing to go to make your content or service available to as many people as possible?

Would you be willing to record a video blog of yourself reading out-loud over 175 of your blog posts making sure you don’t leave out individuals with impairments who want access to your content?

Let me introduce you to Sarah Levis. Sarah is actively making her message available to ANYONE  that desires access.

I will be interviewing Sarah Levis AKA GirlWithTheCane at the end of this month.

Sarah has had not one but TWO STROKES before the age of 35. She developed what is called a Brain Arteriovenous Malformation(AVM).

When you move form, “pretty healthy” to dealing with a rare medical condition your perspective changes. You identify with and often take on the role of “disability advocate.” A light switch turns on, and you start envisioning a world that embraces ACCESSIBILITY FOR ALL.

How can I convince you that your service, device, website, SHOULD be accessible?

You don’t have to get sick or become disabled to “see the light.” Have a little faith in those that have gotten sick and or disabled and are making the daily scarifies.

Trust me when I say EVERYONE WANT’S ACCESSIBILITY!

You may think moving from “pretty healthy,” to ” chronic disability” is a far fetched idea and not scheduled into your life plans. I pray that is the case. BUT life happens and when it does you will appreciate those that are putting accessibility into practice.

Repeat after me….

“Completing this project will take a while! But I believe that it’s worth doing.”

Check out Sarah’s first video blog post:

Much love,
Marissa

That’s it?

“That’s it” …. HAS to be the two words that come to mind after a Google search result returns minimal information on your medical condition.

The 12-12-12 journey has affirmed that rare medical conditions don’t get the press coverage, and financial backing to foster awareness.

What type of information is available to you when you are diagnosed with a condition that AFFECTS 1 in 200-500 PERSONS?

The previous statistic confirms why I had a somewhat difficult time locating a support awareness t-shirt and bracelet for this months 12-12-12 project.

That’s why I believe it’s crucial to embrace and support charitable nonprofits and support groups.

Here are two GREAT examples:

The Aneurysm and AVM Foundation

AVM survivors network (Where I located my awareness bracelet! Thank you Kim and Jaclyn McDermott)

Buy an AVM Bracelet- Help Raise Awareness! - AVMSurvivors.

Buy an AVM Bracelet- Help Raise Awareness! – AVMSurvivors

The reality is:

Person is greeted by a specialist that quickly rattles off complex information and often times the individual and their families are bombarded by a floodgate of information.

After you digest the diagnosis, or in this case SURVIVE “sudden hemorrhage, or bleeding into the brain, a form of stroke,”  your going to want more  information about your condition.

Realizing and appreciating the importance of nonprofits and support groups I have moved from the words, “Thats It” TO “Thank God”!

I would like to leave you with 3 AVM facts from The Aneurysm and AVM Foundation

About 5-10% of AVMs are discovered by accident while the individual is being tested for other unrelated medical problems.

AVMs arise in the brain, spine, lungs, kidneys and skin. Brain AVMs are the most common.

Most patients present between the ages of 20 and 60 years of age. The mean age is about 35-40.

Much love,
Marissa

Worst Case Scenario At A Job Interview

At 22, Sarah Levis dressed and ready to impress headed into a job interview. Little did she know she would have a “small stroke” in the middle of her job interview! Talk about job interview nightmares.

You read that right! A STROKE IN THE MIDDLE OF HER INTERVIEW!

It started with a tightness in the base of my skull, and within five minutes I had developed the worst headache I’ve ever known.

Sarah was diagnosed with a brain AVM (arteriovenous malformation), which according to the Mayo Clinic is “an abnormal connection between arteries and veins”.

Looking forward to spreading awareness about this condition.

Much love,
Marissa