Wow, its already been a year since i was diagnosed with my avm. A lot of mixed feelings for sure. Is it nornal? Hiw did some of you feel when your anniversary came? Im thinking about celebrating survival.
This past June 13 marked the two year anniversary for my 13 yr old daughter. Since hers was discovered through a very scary bleed, each year we have celebrated the day. It helps her not feel anxious about the day, too. We have cake with her friends and go out to dinner as a family at her favorite restaurant.
I felt very anxious the week and days leading to my anniversary… So much so that the anxiety and stress of it all may have triggered a seizure. next year I plan to be more positive, and focus on the good things and celebrate like it were a second birthday!
I have 9 months and every 15th of each month I am glad nothing is going on except head aches, so I kinda of celebrate each month and the days since my last seizure. Glad to be here each day.
I don’t even think about it. Just another day. I’m alive and waiting for answers to how it’s going to get treated. Been 10 years and nothing has changed. But congratulations on your first year anniversary and I hope you have many, many more!!!
Did you read the other post of 1 year anniversary by darrenfrowley today? Great perspective. I forwarded it to all my children. (My husband and I have 8 children - he had a very severe rupture and bleed leading to stroke 9 months ago. He has come a really long way from then - but doesn't speak, and has very minimal movement.) What a great way to see life shared by Darren! I just finished taking my husband for a walk in a tilting wheel chair around the neighborhood where he is in subacute care center. I spoke with a lady who was gardening her rose bush. I asked her how her 4th of July was. She told me of going to Big Bear mountain and relaxing. (Our family had gone together there just before my husband became ill.) Then she said, "All good times have to end, so here I am." I thought - wow - I'd love to go to the mountains with my husband (she told me of her husband fishing, which my husband also did) - and I'd even like for that to be over and go home and garden versus spending my days with my husband in sub acute care (I am in NO WAY complaining! Just amazed at her perspective.) But my main thought is that it is all in perspective, and making where you are today good. I came here on the evening of 4th of July - had the folks here lift my husband into the tilting wheel chair, and we went out into the parking lot, turned on some patriotic music on my phone, and saw fireworks on three sides of us for a good hour - more fireworks than we'd ever seen. And we MADE a good time of it. He hasn't seen the dark night sky or the moon in 9 months....and I told him I'd not kissed him beneath the moon with the fireworks - so what an opportunity:)! And all the kids were at my daughter in law's parents, so we even got to spend it alone together. Life is all about perspective - we can find God's blessings if we open our eyes and look for them.
34years now and i still remember every 6th March
It changed my life i suppose. Epilepsy ever since. But the day they told me it had gone couldnt tell you. Memory isnt what it should be.
Yay for your 1 year anniversary, Monica! I celebrated my 3 year in May and I've told others I really like the passage of time now. Have fun celebrating your survival!
Celebrate it every year as I do…God bless & keep the positive vibe going!
Early "anniversaries" can be tough. I used to think about all the things I'd lost because of the AVM I have. That's part of the grieving process when anyone experiences loss. But even though I still live with an AVM after unsuccessful treatment I now think of how strong I am to be a survivor, to fight against something that could have killed me many times and still be here.
By all means - celebrate!!! I mark my anniversary by calling it “Ed’s Birthday” - he is my stuffed horse who was given to me in the hospital. He is like Wilson the Volleyball in Castaway. This year he had a Despicable Me themed party. My sisters really came through on the cupcakes and decor. FYI I am an adult but celebrating in this way helps my nieces and nephews celebrate w me and I need all the help I can get bc it is totally natural to be sad, too. I’m on my 3rd but I think the first might have been the hardest. Pics of the Despicable Me party are linked. Sadly, there was no piñata. May by next year… atnt
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I celebrated my first anniversary of my AVM bleed on April 25.
My husband and kids and I had a lovey day.
We had a lovely day! Have a great day and celebrate!!!
Hi! I was really young when my head burst and an AVM was found to be the cause of my coma. I have had several lives, as I've had multiple hemorrhages. For sure though, life changed, and a new normal was born 41 years ago, after the first bleed. I can't say I "celebrate" that day, April 29, 1973, but I am aware of it, where I was back then, what I was doing, etc. I guess I celebrate survival, but it truly seems like another birthday, because that day, my life changed, forever. Six years passed with me living a different life and I had my second brain hemorrhage. This time I was a young adult, and it also starts what I call, "My third life." All in all, I have done more living than I ever would have if I had not been faced with such challenges and the knowledge of how fragile life can be. I appreciate every minute. This being said,tomorrow I face another big life saving procedure. I will undergo the Linear Accelerator to "freeze" a benign brain tumor that is probably there due to all I have been through. Wish me well!!! Here we go.
Prayers and hugs for you Susan!
Sounds Good, Glad To Hear it.
Thank you so much.
Prayers and good thoughts to you, Susan.
Congrats! I think on my 1st-year anniversary I was transitioning into that bittersweet mode. It’s coming up on six years for me, and I now focus more on all of the things that my “new normal” gives me, rather than focusing on that which was taken away.
Another post mentioned approaching a 1-year anniversary, and he focused on lessons learned. I applaud this focus; it took me way longer than one year to turn heart-break into lessons learned.
Nonetheless, it happened, and it gives deeper meaning to me to celebrate, or at least recognize, my change-in-circumstances anniversary.
I didn't celebrate the anniversary of the discovery of my AVM, but I do celebrate the anniversary of my craniotomy because it was from that all of the good things I have in my life today health wise became possible.
Discovering I had an AVM just made me fearful, anxious and at times even a bit panicked. When I thought about a bleed, maybe possibly dying it made me depressed, sometimes angry often sad and sometimes even caused me to feel sorry for myself.
Maybe there's something in a diagnosis like that to cause some people to want to celebrate but for me no I never did find it. I HATED having an AVM, I wanted it out of my head and I wanted it to stop ruling and controlling my life.
I wasn't even interested in having any kind of ultra super zen mindset, religious experience or warm, fuzzy Kumbaya moment around it. Nope I wanted it out and I wanted to stop having seizures and I wanted to be off all meds or I wanted to be dead - period!!!
Even after a very long wait, when I finally got the news that the gamma knife had been successful, that the AVM was occluded and my risk of a bleed was now no greater than that of anyone else without an AVM still I did not celebrate because still I had that crappy thing in my head!
I don't celebrate the exact anniversary of my craniotomy because that was a scary day. and I don't celebrate the anniversary of the first three days post op because even though I am very thankful, grateful for the excellent care I received it was still really hard.
It wasn't until about the fourth, fifth day maybe that I really started feeling like it was all going to be okay, that I was cured, truly on the mend and that finally at long last the whole hellish nightmare was over and though it would take me some time to heal from the surgery eventually I'd recover and when that happened feeling my old self again I'd have my life back.
Since my family and I can't remember exactly what day that occurred we picked a date after I actually had the craniotmy to celebrate as my recovery day. By then we all agree I was doing really well, the worst was over and from there on out everything just kept getting better and better for us as a family.
April of this year was my first anniversary and my oldest son took me out to a very nice restaurant to celebrate and got me a great card. Later a friend of mine came over and we celebrated by sharing dessert and playing board games and just hanging out. My youngest son wasn't able to come but he called and we had a really nice talk and then later when he was able to make it to town he brought me a gift and then spent the day driving me around to all my favorite second hand stores and lugged all my purchases up the stairs for me. Even my neighbor called to wish me happy anniversary so it was really great.
I intend to celebrate the anniversary of my recovery every year for the rest of my life. I was diagnosed back in 2002 had gamma knife in 2006 I believe it was, had the craniotomy in 2013, it took a full year to fully recover from brain surgery - that's twelve years. I'm only 49 years old - twelve years is a pretty substantial part of my life I mean we're talking over a decade.
All the time I'm hearing on television the news and such about some woman somewhere who battled cancer for four years or five years or something and there is always this huge out pouring of support as there should be. But when you have an AVM it's like oh no big deal. Actually though when you think about it, twelve years that's almost a 1/4 of my life so yeah that's a really big deal!
Especially when you consider added to that I had horrible headaches, strange spells at night which I now know were seizures, memory loss, missing time, auras from my earliest memories. I mean the first time I got a really bad headache I was five years old. And my memory of it was climbing up on the couch to brace myself for it and thinking oh no, not again. So who even knows how young I was when they began but clearly by age five I was already so used to having them that I'd grown weary of it.
It is so fantastic to be cured and I'm not going to stop celebrating because I've paid my dues to get here and I have totally earned it. I had to work for my recovery and so did a lot of other people and yeah I think that does call for celebration not just this year but every year.
I think it only makes sense to celebrate your recovery every year for at least as many years as that condition in the past caused you to feel miserable. While not everybody is going to be have the same type of recovery I think we can all have an anniversary of when for me it finally got better. And then in some way big or small commemorate that.
Every year on May 17th I choose to celebrate as a survivor rather than to mourn like a victim.