My entire life I’ve been dealing with this VM with AVM contributers. Attempting to explain it to friends and others who can somewhat understand but never fully. I know what I have only occurs with 1% of the population. I’m just shocked to have finally found a group of that one percent in one place. This isn’t the first time I’ve looked for resources, but now is a great time to find one. Treatments are exhausting and although I’m (knock on wood) nearing the end, I find this last bit almost harder than the first. There’s so much hope for what life will be like without my malformation, but it’s been such a huge part of my life it’s hard to imagine life without it. I’m sure that sounds crazy. Either way, I couldn’t sleep tonight and maybe it was because I was meant to find this site. Thanks for being here.
I’m so glad you found us . I also thought I was alone . Here you are neaver alone ,someone is always here to listen !
Erin- I totally get the “this is a huge part of my life and can’t imagine life without it” thing! How crazy is it that we say this??? We know we don’t want it but we don’t know how we will “be” without it. But it IS hard to reconcile those feelings. And it is weird to think your life won’t include this AVM at some point. Since both you and I have had it our entire lives…it’s almost like an appendage or something! Still, I’m going to be very excited when it’s gone! I do wonder how I will feel and if I will be “different” though… weird!!!
im so glad you found us, we are here for you… you were ment to find us. xxx
Erin,so great to meet ya,and so happy you are here,truely a blessed place to be!!
I was also so relieved to find this site…where everybody understands what you are going through.
Hello Erin. I hope the days are as good as they can be and get better. It is always amazing how, when all is alligned one thought leads to the next which brings us to take action and -arbitrary or not- one click leads to somewhere you did not expect to be…
Being a 1% is still an “old” biker monikar…we have brought a twist to that tag that most never thought possible…
It honestly lightens my heart when I remember that people can feel allienated, alone or lost until they SEE that they aren’t. Understanding can go a long way in the dealing/healing process. Hope you find much support, sharing of information and leads to more here. Lots of good people with lots of love here and quite an array of humor and laughs. Just regular ol’ 1% who happen to be irregularly regular…
Be good to you. Take care of you. You are in my prayers. May God continue to guide, guard and hold you in the palm of His hand.