Hidden Disability Universal Symbol

To symbolize is to acknowledge representation! I found it comforting knowing a Hidden Disability Universal Symbol was even in existence.

Hidden Disability Symbol

Proposed international symbol for Hidden Disability, copyright Laura Brydges.

To see is to believe, and being forced to prove you have a medical condition that is not visible has been frustrating, disheartening, and demeaning.

Hidden disability is defined as…

” Those disabilities that cannot be directly identified through observation. They can include cognitive, chronic health, and psychological disabilities.”

FOR THE NUMBER CRUNCHERS….

Here, are some hidden disability stats published in the 2002 US census.

Approximately 7.9 million people 15 and older had difficulty seeing words and letters in ordinary newspaper print, including 1.8 million people who reported being unable to see.

An estimated 7.8 million people 15 and older had difficulty hearing a normal conversation, including approximately 1.0 million who reported being unable to hear.

People with limitation in cognitive functioning or a mental or emotional illness that interfered with their daily activities accounted for 6.4 percent of the population or 14.3 million people.

7.9 million people with one or more selected conditions. (leaning disability; mental retardation; Alzheimer’s disease, senility, or dementia; or other mental or emotional condition).

I support an international symbol for hidden disability for the following reasons…

1. The symbol is an acknowledgment that hidden disabilities do exist.

2. It will create conversation which will bring awareness.

3. It’s a symbol that can be used anywhere… “It can also be used by organizations, such as hospitals and schools, to identify those with hidden disabilities that may require special assistance.”

To learn more about the Hidden Disability Universal Symbol, please check out the Hidden Disability Facebook page.

References:
http://www.census.gov/prod/2006pubs/p70-107.pdf
http://www.disabled-world.com/disability/types/invisible/
https://www.facebook.com/HiddenDisability

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

Thank you Jenny Craig! Don’t Mind If I Do-5k Walking Training Schedule

“Ready, set, let’s get your booty walking”  It’s time to bust out a 5k walking training schedule!

That sounds like a plan to me!

For those that may not recall, I got the green light from my vestibular rehabilitation therapist to walk in the Jingle Bell Run/Walk supporting arthritis awareness.

I was PUMPED, but quickly realized I needed a plan of attack.

That is where Miss Jenny comes in…

I stumbled across her Run/Walk webpage that prepares their members to walk in the American Heart Association Heart Walk 5k (3.1 miles).

Walking Workouts - Prepare for Heart Association Walk | Jenny Craig

Perfect! It’s neat to see that walking can be just as SEXY and GLAMOROUS as running. Whoop Whoop!

Hope Miss Jenny doesn’t mind if I use her walking training schedule as my guide.

They offer 4 different training programs that will prepare you for a 5k.

Having a training schedule will allow me to achieve the following:

  • Work toward actually reaching the 3.1 miles before walk/run event.
  • Building up the stamina for the run/walk.
  • A workable plan to follow, keeping me focused on my goal.

My current health situation will present days where I may fall off the training program… BUT  I can ADJUST the program to work for me!  THANKS JENNY.

Off to schedule time for booty walking!

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

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!)

Continue reading

12-12-12 The Lesson: Positive Change

Change scares MOST of us. WHY?

BECAUSE THERE IS A POSSIBILITY WE MAY FEEL…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

 

When I got sick, I subscribed to two schools of thought…

1.) I have no control over this illness. It has me. I CAN’T change my situation.
2.) My choices are limited, BUT there are plenty of areas of my life I STILL HAVE control over (what I put in my mouth, my at·ti·tude, my personal values and beliefs). I started focusing on what I could control! I realize access to choices means there is a chance I CAN change my situation.

 A POWERFUL SHIFT happened when I moved from I CAN’T to I CAN!

 When I was in the I CAN’T camp, I felt…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

 

Now enrolled in the I CAN camp, I feel…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

WHAT?

How can this be? I know what your thinking. “Marissa, what are you talking about? You are still in the same place! Nothing has changed for you.”

Does that mean I am not broke, not sick, or not realistic about my situation? NO.

Let’s face it, I am bordering “JUST ANOTHER STATISTIC “ status. There is a HUGE chance I may not be able to reinvent myself and support myself financially or enjoy a career I am passionate about because of these new limitations.

THE DIFFERENCE IS…

I BELIEVE that I have enough variables in my life that I can control where CHANGE may positively alter my current predicament.

This month’s 12-12-12 lesson has reaffirmed that belief.

Peachy shared with us a lesson that is both critical and relevant.

“Be the change that you wish to see.”

I’m trying to be the change that I wish to see. I wish there was a change in regards to arthritis. I wish there was a change and a cure for arthritis. I wish there was more people who actually understood about this disease and where people didn’t feel isolated and alone and felt freely to talk about it and not feel like people are going to discriminate against them, and make them feel alone. I’m trying to be the positive change in which I hope people who have arthritis can see.

Peachy listed VERY SPECIFIC areas in her life where she doesn’t have much control over. BUT she is grabbing onto the variables in her life that she has control over and that she BELIEVES she can actively change.

She is positively changing the world around her by being the best version of herself.

Here is a link to this month’s 12-12-12 podcast interview with Peachy.

Peachy! You are a blessing and THANK YOU for reaffirming the power of positive change!

Much love,
Marissa

P.S. Bust out one of your devices or go old school on me and use paper and pencil. Jot down one area of your life you have control over mentally or physically.

Example: Are you judgmental? Do you see someone walking down the street and you are quick to judge them? “Oh my, what was she thinking wearing that? Oh no she didn’t!”

Well guess what? That is an area of your life you have control over! Whatever you decide, let that be your start to positive growth. You will soon find there are many areas where positive change is possible.  You will start to experience personal growth AND THAT will instill a belief that positive change is possible for you.  It might hurt. You will most likely resist. You may fail. And that is when you know you are on your way to producing positive change. You got this!