Having an AVM isn't like having cancer, a diagnosis that has touched everyone. It isn't like having a physical disability that everyone can see. When I am asked about my symptoms people feel like they may able to relate because they too have headaches and they are often tired. When I talk about my bruit (woosh, woosh, woosh inside my head) people will say "Hey, I can hear that too!" Let me personally guarantee you that it's nothing like what you hear. Imagine it 20 times louder and it disrupts your sleep and concentration. (But thank you for trying to understand.) Sometimes people unknowingly minimize my seizure experience(s) because "at least it's not a grand mal or a big one."
My friend Holly has an AVM. It is in a similar location to mine. She was also treated by Gamma Knife and has similar side effects. We are on the same anti-convulsant. She is a single mom and one of the most amazing women I have yet to meet. She introduced me to "The Spoon Theory" written by Christine Miserandino. I encourage you to read Christine's story. Though her diagnosis is different, Christine's explanation of what it feels like to live with Lupus couldn't get much closer to what it feels like to be me in this moment. We talk in terms of spoons often here now and it has helped my family significantly.
A very thoughtful Christmas gift from John.
So I'll always have enough spoons.
Holly has one too - because John is just that awesome!!
Keep your extra spoons handy I may need them yet.
Sending you love from the hill.
Steph
Much love to you and John. I haven't decided where to hang mine just yet, it will have to be a special spot. I couldn't be more thankful than I am to have you both.
ReplyDeleteAnd yes I fully intend on posting your blog link because I love this post with or without me in it. The part about people saying they have the same things, I get frustrated often and sit quietly knowing people are trying to understand. I appreciate you feel that too. I think having you keeps me awesome and from crazy. :)
Hugs to Holly :)
ReplyDeleteI think I get caught up in people trying to compare Gamma Knife to the same kind of radiation people have during cancer treatments. I have said this before - It minimizes my experience (and that of a cancer survivor) when those comparisons are made.
During my surgery I was subjected to a CTScan, MRI and Cerebral Angiogram while having halo screwed to my head. I was in the Gamma Machine (imagine tunnel)for over five hours, awake. They had to manually reposition me in the machine five time using the halo. My radiation is active still. The swelling it has caused has contributed to all my side effects.
This treatment was the only option to destroy my AVM. I am still at the same risk of a stroke today as I was before treatment. If anything my AVM is more unstable. It could take three years before my AVM atrophies. I still may be left with side effects like epilepsy, forever. Not to mention the long term potential side effect of Gamma, Brain Cancer. Ironic?!
Much understood here Steph. I can say it and actually mean it. Hope your day is good and you finish with spoons left over. <3
ReplyDeleteTonight I pray for all my AVM friends and family. It's hard to understand the "why" part of it and even harder on the ones around us living it with us too. I was so amazed at the connections made with other AVMer's going through this too and felt so blessed to have them as friends. Steph, I am always here to lend a hand , an ear, a shoulder day or night. Both you and Holly WILL beat this nasty monster. The "why" becomes more clear to me everyday, the man upstairs wanted us to meet and help others as others have helped us through the journey. xoxoxBINKYxoxox
ReplyDeleteHugs to Binky. I'm not sure I would have stayed sane through the early days of diagnosis. I am grateful on a regular basis that fate brought us together (thanks Winsley:) I am also grateful that you are free of your monster. xo
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