#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.

[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.

[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.

[beckysblog2]

Brain AVM

1986 was a busy year for me. I was 16, newly married, and had a new baby. In October of 86 I had my first gran mal seizure. I died that night. No, I did not see any white light. I had to be resuscitated twice that night. I woke up in the recovery area of the ER. The nurse went through the normal questions asked after losing consciousness. I was cleared to go home but was told to follow up with my primary the next day. Through my short life, I had suffered migraines. Horrible painful migraines. The kind that suck the life out of you. My parents chalked them up to hereditary as each of them also suffered migraines. After visiting with my primary, he referred me to a Neurologist. My primary and neurologist had me do many tests. CTscan, EEG, angiogram, which picked up the AVM in my brain. The seizure was due to the AVM bleed. I was told I was born with it. As I got older, it got bigger. Stress from being in school still, being married, having a baby, and working a part time job caused the bleed. My options were have brain surgery and live or don't have brain surgery and have another seizure like the first and it will kill you next time. Option one it was. I still had a 50/50 chance on the operating table. In January of 1987 I went to the hospital for the brain surgery. I was under the knife for 17 hours. Before going to the hospital I had blood drawn from me just in case I needed blood. 4 pints is what I gave them. 4 pints is what I needed during the surgery. Waking up, I was groggy and sore. I don't really remember the two weeks of staying in the hospital. I remember the scar and staples from ear to ear though. I was pretty dazed and confused for those two weeks. The Neurosurgeon did do a second angiogram and a spinal tap. Both of those I can say really hurt. You would think living with an AVM in my brain this long I'd be an old hat at. Still learning new things daily. Especially since I now have 4 more AVMs in my brain right behind the first one that was resected. Nothing can be done to those though. I still have seizures, occasionally, headaches daily, migraines at least twice a month that put me out for 2-3 days at a time. I'm nauseous, tired, and can't get out of bed. Always feel like the worst mom and wife in the world when I get them. I have been told my neurologist I cannot lift anything above 20 lbs, no hard exercising, keep my blood pressure down, as any of those would make an AVM rupture. I tell people today, I had brain surgery, what is your excuse?