Quantcast

AVM Survivors Network

1 year anniversary

Hey guys. My name is Alexander Rivera. Well, tomorrow is gonna be my 1 year anniversary since I survived my operation that by all means should’ve did me in. I am eternally grateful for the heavens to give me a second chance in this life. For the past year it has been a challenge, lost 20% slight in my left eye, lost some mobility in my left leg and my food perception has changed DRAMATICALLY! My hemorrhage caused a midline shift and as a result, I no longer like beef, pork, cigarettes, and soda which I’m not complaining at all cause the smell of them items is horrible! Odd thing is, I have an INSATIABLE love for raw spinach, broccoli, green olives(which before i really found olives disgusting) and I eat chicken but not on ths bone cause its disgusting and I love fish!! I’ve lost alot of weight but honestly, like I tell all my friends and family, I’m not eating like this to lose weight, I’m only eating what I love now! People eat beef and they love it. I eat spinach raw and I love it. Although I still have my AVM and I due to the fact, from my doctors, that it’s more safer to leave it alone than remove and I have to go through a CT scan once a year for the rest of my life, I’ve came to the realization that my AVM changed me and it took me awhile to get used to this new lifestyle but I accept this. The God’s has a purpose for me and I will abide by their will. I am so happy that I found this network because I know that I’m not alone in this and the changes that has happened to all of you makes me understand that we are all in this together. And from all of this, my sister whom I haven’t spoken to in over 10 years, came back into my life. To me, shes my gift and I’m truly grateful for that! God bless you all and may we live in peace and happiness and enjoy life!

7 Likes

Welcome to the site!

1 Like

Thank you :blush:

Welcome to the site Alexander! This site has been incredible for me, people who have a great understanding and appreciation of the trails and tribulations we fac make the journey much easier. Take Care, John.

1 Like

Thank you much john!

Welcome, Alexander! I recently joined the site and it’s already been super helpful to learn about the journeys of others as I embark on my own AVM journey.

3 Likes

Well your my avm sister in this ordeal we’re going through. You ever wanna talk, just send me a message

Welcome to the family & great to hear things are going well for you… God bless!

First, welcome to the group.
Second, change will be your middle name from now on!
Third, after my stroke, the only thing I could eat for months were oranges and vanilla ice cream. Everything else tasted like cheap pastrami.
You are among friends.

1 Like

Welcome- 1 year anniversary a great thing

Alexander:

Welcome to the AVM-ers group. We’re a great bunch of folks who will give you support and encouragement throughout your AVM journey. You have gotten through your first year and it sounds like you have discovered good insights on your journey to heal. I’m so glad you found us. Here is my recipe for dealing with all the challenges associated with your AVM: P&P (Prayer & Patience). I wish you all the best.

Sharon D…

Hi there. So happy to read your post. You sound like such a positive individual and I really admire that. My sentiments about my AVM seem very similar to yours. Due to its position I have always been advised to leave it be, to go and live my life and try to forget about it. In reality I could never do the latter. But I do feel I have accepted the situation and am a ‘glass half full’ kind of gal (about this at least!) I really wish you all the best and hope that life continues to improve for you. Be grateful for what you have and you won’t go too far wrong. Lulu xx

2 Likes

Hi Alexander, I loved this post! I had my bleed ten months ago, and have also lost some left peripheral vision and have also noticed some changes in taste albeit more subtle than yours!! I drank a gin and tonic most days for many years before my AVM and have not drunk one since, but still enjoy the odd beer or glass of wine. I just don’t like GnT anymore. Same with coffee, I just don’t want it, whereas before I was a real coffee nut. I think perhaps because I drank coffee just before my bleed, and know that caffeine increases BP perhaps my body knows to avoid it. However, unfortunately I still love chocolate and steak, and haven’t had a vegetable revelation like you. I hope you are well and continue to recover from your bleed.
Best
Jonny

2 Likes

My friend, I am the same way! Before this mess, I was an avid smoker since I was 13! Since this, I can’t do cigarettes. The smell is bad! I also cant eat any beef or pork! The smell of beef smells like charred flesh and pork looks disgusting big time!! But, I have got an uncontrollable love for raw spinach, kale, broccoli, chicken, fish, and olives. Before, I seriously HATED olives! Now it’s like sweet candy. Soda looks like sludge to me and any loaf bread has a bad sour smell to me. My only weakness/love that I have attained since, is my obsessive need for popcorn and lattes. Bro, before I never liked any type of coffee besides regular coffee. But, I take these changes as the will from above. The downfall from this is that I lost 20% vision in my left eye, lost minor mobility in my left leg, have short term memory problems (which is really aggravating). Oh! I also have an obsessive passion for reading now. Bro, before this, I literally read like 4 books in my first 42 years living. Since this, 1 year later, I’ve read like 6 books. My opinion, just go with it. My life that was, is gone. Took me some time to get used to the new trends that came to me but I’ve learned to live with it and accept the new changes. AVM ruptures changes us and knowing that we survived, I gladly accept the new life styles. Many blessings to you and good luck

CONGRATS, A, on your anniversary, & WELCOME here! After my 1 years anniversary of my strokes during surgeries, way back in 1990, I was not at all as far as you are, so you are doing MARV!! I believe I found this site here in the late 1990s, but before that, I did not find ANY OTHER AVM SURVIVORS anywhere. I was SO GRATEFUL when I found this group, & that is certainly a Blessing to me!!!

@BoxBarge

Do you know? It was late 2007 that avmsurvivors was first set up by the founder of Ben’s Friends, Ben Munoz, after he found himself recovering from an AVM rupture and he decided to set up his own community to get a bit of peer support.

So, you managed without support all the way to 2007 at least!

Best wishes always,

Richard