#avmwarrior

[beckysblog2]

In 1986 I had my first gran mal seizure. It lead to many tests to figure out why. In my right frontal lobe, an AVM was found. It had bled causing the seizure. I had brain surgery in January of 1987. The AVM was resected. I have a walnut sized piece of brain missing. After many years of not seeing a neurologist, I started having major migraines, again. This led to my primary sending me to a new neurologist. He found 4 more AVMs in my right frontal lobe. It was decided to leave them alone. I have to keep my blood pressure in check, I cannot lift heavy objects, as any kind of strain can cause 1 or all to rupture and cause me to stroke out.

[beckysblog2]

I have been a survivor my whole life. Fighting my whole life.

[messy-little-soul]

March 19 2019

Going to order this shirt and stitch on today's date to remember today's miracle.

[messy-little-soul]

February 28 2019 

(So so proud of everyone 'including myself' involved in this - take a look)

Today is Rare Disease Awareness Day...

You probably look at me and think I'm a normal, besides wearing a whole lot of braces and splints. On the surface that may very well be the person you see, but unfortunately I'm a very different person underneath.

I have a Brain Arteriovenous Malformation (AVM) which occurs in less than 1/2 of 1% of the world's population. It is estimated that approximately 3 in 100,000 people have a cerebral AVM. I also have seizures, spastic hemiplegia, Anxiety, depression, chronic headaches/ migraines, scoliosis and other health issues that were brought on with this rare disease. Everyday can be a struggle both emotionally and physically for those of us who have rare diseases and chronic illnesses. Not every disability or condition is visible.

Just because my condition is rare, it doesn't mean that people living with this condition doesn't matter. Hoping to spread awareness in order to have more treatment options available to us as there are limits and very little knowledge about my rare disease.