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AVM Survivors Network

Staying on the grind

I don’t know what I’m doing. Maybe asking for support. Maybe just telling my story hoping someone identifies.
Life.
Had my CVM operated on in my brain stem. That was December 2014. Traded severe headaches and many other maladies for this. My new normal.
Facial paralysis, double vision, hemiparesis, balance issues, & hearing loss.
It’s different maybe better. The other was completely debilitating. I’ve learned to walk again, drive again, even have a part time job.
Just finalized a divorce. Stopped taking shit and started taking care of myself.
With the help of ADA laws and SSDI, I’m making it. Three school age boys to raise, a single family home to care for, and every other weekend to fill.
When I think about it, I wish things were different. The key to my happiness is focusing on where to go from here. I’m 42 now. Starting to think I’m going to be around a while. So, I’ve got time to figure it out.

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Glad things are looking up for you. You’ve been through a lot. Just curious, What is a CVM?

Cavernous Malformation. Same type of vascular anomaly as AVM but on the lower pressure return side. Sort of oozes out making a clot bubble instead of the dramatic rupture. The brain stem is expensive real estate or it would not have been as big of a problem.

Wow! Jeremy, that’s a wow thing! Power to you! I know you’ve been through the toughest with your CVM so I’m very impressed with your grabbing of life by both hands and doing what you believe is right, especially given your limitations. Definitely encouraging for those equally struggling with all of the aspects of brain AVMs, stroke, etc.

Power!

Honestly.

Very best wishes,

Richard

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I was thinking of you not too long ago and that it has been a while since we heard from you. I recall with fond memories a welcome to this site from you over three years ago. I was struggling, you put me at ease and made me realize there is people that understand! You’ve had a lot going on, holy smokes, but facing the challenges head on! Positive thoughts being sent your way! Take Care, John.

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Jeremy you’ve been through a lot and you are handling what- ever comes your way. I pray you keep getting better and better. Those 3 boys need their Dad. Keep moving forward at whatever pace you set. Prayer & Patience works!

Sharon D…

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Well, when I got up to 255 I set a goal of 205. Today, I’m at 207. Biggest benefit is my left knee. That’s my clumsy side so I kind of stomp when I walk. My scooter broke and I had to do a tremendous amount of walking. It hurt for a couple of days after, but the painful would’ve been impossible before.

I’ve got a crush on someone. It’s been 17 years since I’ve asked anyone out. I promise updates but no juicy details. I’m a gentleman;)

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Hi Jeremy
How did you go from 255 to 207? I’d be keen to know:)

carol

Started with diet. I can’t afford to eat out anymore and I avoid box or pre prepped meals. After I lost some that way, started doing a little walking and swimming. Mostly on a treadmill. Now, that I’m in better shape, it’s more about using my body. Push ups, squats. Body weight type stuff. My two biggest hurdles were portion size( if I limited the amount I ate I would get bad cravings) and exercise (I can’t go hard or long so I mix in a little exercise often). The people at the grocery store get a kick out of seeing me do push ups.

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Hi Jeremy
Thanks for the reply. I think diet takes a bit of planning ahead, making meals from scratch from simple ingredients. Not easy I know. Little bits of exercise and often is a good thing. Walking I always found keeps the weight down and the mood more positive. I will just have to start again, starting is the key…haha