Thanks for this website

General
1

I am so lucky to have found this site when I did maybe 4 years ago. I am happy to be able to help anyone who posts something I have felt or had happen to me, and let them know that what they are feeling after AVM is something I experienced, too. Just the fact you can read about AVMs now and get real information, is amazing to me. I have seen so many blank stares from doctors or nurses over the years in regard to AVM. When I think back 55 years to when my AVM bled, no one knew much about them at all. For years, I had no idea what happened to my brain as a kid, and I only had a little information from old old records, and my now 82 year old aunt, who lived with us then, and her memories. I researched and read; and on my own figured out I was not an “alien” which was what I thought about me compared to other “normal” humans.

If I can answer any questions, please ask.

beans

2

Thank you, Beansy, for bringing this up as a reminder. All to often, it’s easy to forget, and I know that I do so unintentionally, to be grateful for some things that have graced my life.

For example, having this community even in existence is unbelievably awesome. Thank you Ben, Scott, and team for inventing this!

When I first found this site, I was googling AVM because I needed to explain what it was to other people, when I wasn’t really sure myself. By sheer randomness, I came across this community

Although it’s difficult now to feel how it would be without these communities (I had to further investigate another rare illness and symptom, too, where this community helped as well), I am so grateful that I haphazardly came across this site and community.

To simply know that others were/are struggling with similar issues helped/help me to feel not so much like a visitor from outer space, as Beansy clearly describes.

Did the / Are the symptoms a pain? Yes, but being able to share concerns that others relate to is paramount.

I was recently looking at how technology has advanced in just 10 years, and it is truly fascinating that something I remembered that started as a non-purpose code of “30 goto 10” has evolved into not only an easy-to-use interface, but also with many people offering tips, etc. I find it amazing.

I have personally had my share of ups and downs, ins and outs, etc. And thankfully not everyone expresses these things in the same way, I’m glad that there is a “hub” of people with the same issues who can offer what worked for them, possibilities to try, in a word, hope.

I recently have noticed my personal shift in perspective. I’m not sure if everyone has this; for me, it’s very cool-and even more so, the more that I think of it.

Where my perspective used to be focused on losing something (and how to deal with those things), I’ve shifted my focus to what I’ve gained. Instead of looking at losing the familiar, I choose to look at gaining the unfamiliar.

Many refer to this as a “new normal” - which it totally is - it’s just different wording that popped into my head.

Either way, whatever words are used, this community helped me and supported me to make that shift in perspective.

In no way are my issues over and done with; however, this site and community assisted me during that time of shift, and this community makes things more tolerable, in general.

Thank you!

3

Julie and Beansy, Kudos to both of you for posting your thoughts on this wonderful community. I have just celebrated 3 years from the burst of my first AVM and if I had been given the option, I would have declined this rare condition. Well, I do have a gratitude list and I am forever grateful for the amazing people I have met as a result of dealing with my health challenges. Julie, I also found this site in a random manner and it has been an integral part of my recovery. I understand your shift in perspective for I feel like a very different person now and my priorities have changed. Oh, long term friends have told me I was nice before but now I'm so grateful just to be alive. I'm continually humbled by the sharing of others in this community and well ... life is good.

4

Susan

Life is good, I agree. I remember having a very happy first ten years of my life. I remember so much from pre AVM. I was on my way to my friend’s house for the day, a Saturday, my Dad was hollering for me to get moving so he could drive me there, and the next thing I remember is waking up after 4 or 5 days in a crib in a strange place, a hospital. I remember being mad because I was in a crib and was 9 years old. That was the beginning of the AVM deal, and they finally did “exploratory brain surgery” on April 10’ 1959. This was based on the results of an EEG. The surgeon knew about where the “irritation” was. He must have been great because he nailed it and removed it. All test other than EEG were inconclusive, even though they were painful and barbaric. Lots of spinal taps and a pneumoencephalogram.

I was married and we had a baby 33 years ago, who is a fabulous man, with a new baby of his own. My husband died when he was 47, in 1997, too young, and that was a huge setback for me and for our son. I could not recover from that loss for a long time, still it is so hard. Our son has a great career as a mining and mineral engineer, married to a great daughter in law, who is a research psychologist and the baby is 4 months old. I do not live near them because I did not want to be a burden. I do not drive due to vision loss from the AVM, and needed to do life myself as much as possible. It has not been smooth at times, but it works, and I am ok. I was a paralegal for a state attorney general office for years, and I was a good employee. I did the best I could.

Thanks for your responses.

beans

5

Thank you for the awesome reply, beansy, and I always find you inspirational. I hope many members read your story. Before my AVM burst, a friend e-mailed me a story about a friend of hers. The friend, Kim, was a runner and a breast cancer survivor. Well, when asked why she ran, Kim's response was because she could. So, now when I am asked why I do everything that I do including exercise, cooking, or whatever I think of Kim and it's because I can too. I may do things slower now but that's ok; I try to focus on what I can do and not what I can't do.