May 10

May 10 Curious about Cerebral Cavernomas? We got you, boo.

Hi friends!

I've wanted to write this for literally MONTHS (since it was originally filmed in January and it is now May) but...brain thug lyfe, amirite?

I want to have a place for all 4 sets of short videos that Jamie and I did. He is one talented, brainstem-surgery-having, adventurous, super nice guy! Since I have little spoons to make this happen, I will post each video with notes below, including links if they're available.

Follow Jamie on YouTube: Jamie's Journey

There's a lot of good information for those newly diagnosed with CCM OR for family/friends to understand a bit more OR general good advice for chronic illnesses OR ya' know being jealous of brain surgery (yes I'll admit I was, until I realized that was ludicrous).

Video 1

Part 1 of the vlog blog blog vlog where Erin (myinvisiblebff.com) and myself discuss the differences of being diagnosed Cavernoma, where one of us can and has had surgery and where one of us has been told that it is un-operable. We compare and contrast how are lives have gone down very similar paths, but very different outcomes.

Energy = spoons (check it out here)
Stay as present as possible/ride the wave/TAZ/keep it light/creative
Tips for making brain surgery less of a crazy suck-fest: get more than 1 opinion, (global directory of CCM specialists), GO FOR IT
Advice for us inoperables: Harry Potter, ha, talk to others, exchange stories, CaverHubs (UK: https://www.cavernoma.org.uk/), Facebook groups (if you're a spoonie/chronic illness rockstar, join mine My iBFF Sunshine Club), Angioma Alliance Community Groups (angioma.org)

Video 2

Part 2 of the vlog blog blog vlog where Erin (myinvisiblebff.com) and myself discuss the differences of being diagnosed Cavernoma, where one of us can and has had surgery and where one of us has been told that it is un-operable. We compare and contrast how are lives have gone down very similar paths, but very different outcomes.

Caregivers: Thank you Lucy! and Carl!, family/friends, research, they are key in recovery and so much more!! Family as support, and team. No guilt all around! Take care of yourself, be respectful of all involved in the sh*tshow.
If you have HOD here's a Facebook group. HOD can only be developed in the brainstem. Not super fun let me tell ya...Jamie says no sugarcoating, so...it's a suck-fest!
The Great Now What is a stroke documentary, and you should check out the teaser! They would appreciate your support. Maggie W. is a brainstem stroke (from CCM, resulting in emergency surgery) and HOD warrioress.
Recovery/healing: patience, podcasts, and meditation. Time & sleep will heal your brain, chill vibes only! Jamie recommends: My Dad Wrote A Porno podcast. Erin recommends H*nest Meditation, Insight Timer for meditation (find my earlier meditation blog).

Surviving a stroke is just the beginning for a young actress, Maggie Whittum, who seemingly had it all. With the support of other trauma survivors and the healing power of art, she learns to reclaim a powerful and unexpected identity. Director, Producer: Lisa Donato // Edited by Jeffrey Schwinghammer Song "Apollo" by Jinx McGee JOIN OUR STROKE AND PAIN AWARENESS MOVEMENT: www.thegreatnowwhat.com

Video 3

Part 3 of the vlog blog blog vlog where Erin (myinvisiblebff.com) and myself discuss the differences of being diagnosed Cavernoma, where one of us can and has had surgery and where one of us has been told that it is un-operable. We compare and contrast how are lives have gone down very similar paths, but very different outcomes.

"Comparison is the thief of joy" --Theodore Roosevelt
Erin dances to Talking Heads, despite hemiparesis, heyo!
Japan and China getting trained in CCM by Jamie's surgeon--cool!
Encouraging news re:CCM around the world! Check out Angioma.org for more.
Own that you have your illness, let's bring awareness to it-->funding-->research-->cure!
Jamie's symptoms, the brain is wild!
EVERYONE'S DIFFERENT
"the brain is a mind-field" -Erin (not funny yet...)

Video 4

Part 4 of the vlog blog blog vlog where Erin (myinvisiblebff.com) and myself discuss the differences of being diagnosed Cavernoma, where one of us can and has had surgery and where one of us has been told that it is un-operable. We compare and contrast how are lives have gone down very similar paths, but very different outcomes.

For me, the biggest fear is the unknown.
I'm not a huge fan of the "time bomb" metaphor, I'm a pacifist, hence My Invisible BFF.
When your body doesn't do what you want, it's frustrating!!
Hats off to everyone who can't have surgery, keep trucking!
Mind field take 2, haha!
Just blog it out! Talk it out! Find a professional too. Also check out posthope.org (private or password protected for close friends/family)/penzu.com is another good one I've used in the past. Here are some ideas if you want to really go for this blogging thing more and have more time or energy or desire or all of the above: blog from home Pinterest. Ps-my site is Squarespace and I love it!
CCM demographics: parents? men?
Advice for CCM newbies: everything you feel is real and valid!!, be descriptive of symptoms, check out a quick video I made for one (of literal tens) of my symptoms to show doctors--it works!!
CCMs, Cavernous Malformations, Cerebral Cavernous Malformation, Cavernous Angiomas is an INVISIBLE disease. Ya hear?
Tattoos!!