Just a note to say "Thank you"!

(I have been meaning to blog this for a few months now but unfortunately, things have a way of getting in the way of our best intentions. My sincere apology.) I want EVERYONE on this site (whether you are the one whom has the vascular condition or not) to know how courageous (even though there are many, many times we feel scared, unnerved, etc.) you all are in facing and learning about your vascular condition (whether it's learning about the condition itself or how or what to do regarding the vascular condition, etc.)!

For all the 'care givers' (parents, spouses, bf/gf, siblings/other relatives, friends, etc.):

Your loved one is EXTREMELY lucky to have you 'in their corner'... gaining the knowledge and caring for them in the best possible way! It is a tough job to do and you may not be able to fully know (by feeling or hearing it right now from the one whom has the vascular condition) how much you really are appreciated by your loved one for all you have, are, and will do for him/her. You ARE making a positive difference for your loved one... please know that with every thing in you and hold that in your heart! Your quest for correct knowledge to aide in the potential success for your loved one is very admirable (and very much needed)... so THANK YOU for all that you have, are, and will do!!! NEVER give up on your loved one please, even during the times that he/she may convey that he/she wants to give up the fight his/her self.

For all the ones whom have the vascular condition:

(If we had the patience, endurance, stamina, energy, etc., I do not doubt that all of our stories could fill a book that would be a 'great read' (congrats. to those whom did); however, I will not go into details of my story here and I will try my utmost best to keep my point of view on religion out of the following (but yes, I do believe in a "Higher Being"... and for me, that is Jesus/God - Christainity):

No doubt, our vascular condition has halted or 'stunted' our familiar way of life (to say the least) and NOT ONE of us are happy about that nor any deficits we may have that's associated with our vascular condition; however, we MUST prevail in this 'journey'. Our journey is often one that's filled with uncertainty (no 'concrete answers'/ no 'guideance'/confusion) and fear (what an emotional rollercoater it truly is!) and we often may not feel very 'courageous' at all. Perserving/going forward in the face of adversity and uncertainity (despite the fear one may possess) IS courage. You SURVIVED... you defeated the 'beast' (AKA: the vascular condition) in this battle and to assist/increase your chances of successfully winning the war with this beast, you are 'educating' yourself (here on this site, etc.). That, in itself, shows your courage and is extremely admirable. NEVER stop believing in yourself and your ability to achieve!!!

There are two things that I have read and wanted to elaborate on:

(1) "Failure is not an option" (Thank you, William): You SURVIVED (first & foremost, that IS what is important... not what-is-no-longer-the-same-as-it-use-to-be) and YOU have a DUTY to YOURSELF to recover to the best you can/fullest extent!!!

(2) "Don't let your AVM stop you from living" (Thank you, James Larkin): As adults, we 'forget' how to do some of the simpliest things because we don't 'practice' it very often in adulthood (like how to 'trust', we don't do 'balancing activities', etc.). When I first read James' blog about not letting my vascular condition consume me, I whole-heartedly agreed with his message and yet, later on I also silently thought "How in the world does it not consume you?". I admit my 'bad days' are days that my vascular ordeal has 'consumed me'. Though we all have different perspectives on how to handle/cope with this mind-boggling/emotional rollercoaster/OMG-What? situation, I have decided to think of it/deal with the situation (even though mine has been resected) in the same mannerism as diabetes = take preventive measures and then focus my attention on other things. (Like most everyone here, my vascular condition was found (in one way or another) 'by accident' (AKA: no previous knowledge), and I lived life's 'events' (the 'ups & downs/'stresses'/etc.) and was fine for all those (*cough, cough* - 36 - * cough, cough*) years. In order for it NOT to control/consume me, I need to 'control' it to the best of my ability, so it does not control me (since it lies dormant (always a 'possibility' there), I MUST do what's necessary to keep it 'dormant').) I hope you find the information you need to arm yourself with the tools needed to defeat our 'monster' in each battle of this horrific battle and are able to enjoy every moment of our 'second chance'.

Hi Cindy

Cheers to all the avm warriors too!



Beautifully said, Cindy!!! (thumbs up, cheers & applause!)

Hugs & well wishes,



Hi, Ladies. Thank you all and Happy Valentine’s Day to you, as well.

Hey Cindy,

Thanks muchly for your words of wisdom and encouragement and positiveness - well done.

Your words for the family/friends of survivors especially struck a chord with me, as I instantly thought of my husband who never hesitated to step up to the plate in the beginning when I had the bleed, and has never once done anything less than being there and running with the ball when needed. I read your post to him and told him about the group here for spouses/partners of survivors and asked if he'd be interested in joining, and to my surprise he said he thinks he would like that very much. Gee, who woulda thought?

I've thought a few times about mentioning it to him but have either forgotten about it or thought he'd scoff at the idea. But your post here reminded me about it and prompted me to finally bring it up, and I thank you for that little kick in the pants, even if it wasn't your intention.

I always enjoy reading your posts here, and very much appreciate the camaraderie we share here - to me it's like 'seeing' your (and others too) bright shining faces and smiles, which always does so much to warm my heart and give me a smile. So thank you!

Cindy...WOW!!! You have such a beautifull way of putting things into words. I wish I had half of your talent. I always enjoy reading your writings.

I agree with you,.. that all of us with an avm,is like a roller coaster ride. We have our highs and, we have our lows.

"Don't let you avm stop you from living" - I also believe in what James wrote. He made some very good points. I lived my life that way for many years...till I became symptomatic (that are uncontrollable). I'm still trying to figure things out. Ha Ha

"Hurray! To all avm survivors and there families"

@ Tori: So happy that you had his support during all this. I don't think he (nor anyone) could possibly even begin to realize just how truly wonderful having that support & love really is for the person whom has the vascular issue. I hope you thank him in every possible moment in every way you possibly can so he can have some inkling of the gratitude you have. So happy that he is open to joining. It will benefit the both of you, no doubt. When he is ready, he will join.

Comraderie = I feel the same and thank you. (A lot of the time, I wish we all lived in one community & could help each other more than through the computer... but that would be 'segregating' (whether it's us or them being segregated really doesn't matter, I suppose) and we can't do that (political correctness, etc.) ... but it sure would make this 'journey' a little easier/more tolerable.)

@ Ben: Thank you. YOU, Ben, ARE a survivor... more than just being alive. Despite the awful 'struggles' these vascular issues present, your good heart & joyful/happy/positive disposition truly shines! It is SO refreshing to see your humor (& your genuine heart-feltness) in some of these posts. (Your humor makes me smile, even in the seriousness & sadness of it all. Thank you!) Don't EVER give up nor give in!!! What's uncontrollable today may be controllable tomorrow... so take a deep breath, exhale it slowly & continue to breathe as you take each 'step' forward. One 'step' (forward) at a time over & over is how one successfully gets to the 'finish line'. (Remember the story of the 'Hare & the Turtle' - slow (waaaay too darn slow it seems as one is actually & currently experiencing things) but surely and doing it the 'right way' 'wins'.) In order to make HUGE daunting tasks 'bearable' (less stressful), break the task down into smaller portions & complete that task before moving on to the next. Before you know it, ALL will be completed. (I know easier said than done, especially when it comes to one's abilities/functioning/way of life and we just want our old selves & way of life back but it works for this too.) Logically, we know this but it only becomes automatic/'second nature' if we practice it.) Take one thing at a time & try to get what works, etc. figured out for it, then go to the next. (A pain-in-the-butt, tedious, etc. task? = oh yes, absolutely... without a doubt! Guess if it was 'easy', there wouldn't be any real point/reason in it. It's our 'lemons' and we have to find a way to make 'lemonade'. (Um, got sugar anyone? * Flagging down the sugar (with arms wailing wildly in the air) for us all * Right here/yes please, we need some. ;) )

Wow well put;)

Thank you, Eileen. Hope you are doing well!!!