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

 

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