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AVM Survivors Network

Okay, I'll go first

Hi, I’m ________. I was first diagnosed with my AVM in __________. I am finding this pandemic _______________________ and having a __________________ on me and my family.

I am most concerned about ___________________.

But I really like ________________.

Fenbe Kem (Hold on) in Haitian Creole - the native country of two of my kids that recently (last Thursday) had their first encounter with CoronaVirus 19. As they have virtually no medical infrastructure to speak of, this can potentially be a disaster of epic proportions.

TJ

Hi, I’m T.J. I was first diagnose with my AVM in 1978. I am finding this pandemic to be very stressful because my doctor has said I would be at a higher chance of getting a bad case of it. Also, I have two daughters and a wife in the medical world and while only one of them would probably be on the front lines, if Corona comes to West Michigan in a big way, it’s still stressful.

I’m most concerned about health - my wife and I, 3 parents all in their 80s and two daughters also in the medical field.

I really like how some people are realizing things that we’ve known for a long time. “It’s hard to keep track of what day it is if I don’t go to school every day.” “The hard part of this is not knowing.” “It’s so weird because i can’t see anything. It would be easier if your body would show you - like if your ears turned purple.” "But they don’t and so no one knows that you have it unless you are really sick.

Ahem, welcome to my life for the last 40 years.

TJ

Who’s next? @DickD, @ModSupport ?

Hi all, I’m DickD. I was first diagnosed with my AVM when I could hear it pulsing in my ear back in 2016. I kept wondering what the noise was and kept Googling until I found this article about AVMs and the symptoms of a dural fistula matched what I could hear. I went to see an ENT doctor and he confirmed my self-diagnosis.

I’m finding the pandemic a bit worrying. I’m not sure that I am worried about myself but I have elderly parents and very elderly in-laws, some of whom you wouldn’t bet on making it through if the virus gets anywhere near them. (I’m not sure this is a good thing to share but I guess others might be similarly concerned) my biggest worry is if my wife and I pop off, leaving our son to grow up very suddenly. He refuses to learn some things about adult life (mostly housework!). I’m going to go to the extent of writing up where all my finances are to be found this week.

My wife is nearly beside herself with worry about her parents and suddenly we find ourselves locked in, living in close quarters rather than being let out to go to college and work. My sister is similarly frightened by the virus as her daughter has cystic fibrosis, which is among the most dangerous co-conditions to have.

We need to say prayers for the poor folk in Italy. Spain seems not far behind. France next. The USA is on a fairly precipitous trajectory, too – very big numbers of people being infected. Very big. So I’m thinking a lot about you if you’re in one of those places or Iran or China or almost anywhere else. I mean I had to look up where Eswatini is the other day: they even have a case there. I keep looking at the statistics on worldometers.info and hoping to see some topping-out of the “daily cases” graphs. However, you can’t see a change on a daily basis. I’m hoping that if I stay patient for a few days, there might be a small hint of a change in direction by Friday but for every day that looks better than yesterday, the following day puts the trajectory back up towards the stars.

I like the fact that spring is here. My wife and I went for a walk out around the streets where we live today and the air was warm for the first time in a long time. The season is turning a little in our favour. I managed to get both my parents to install WhatsApp and have video chats with them in the last few days, so that connects them to their family better than they were.

So, final thoughts? We are all in this together. We can get through it but it is going to demand patience and loss of liberty for longer than we would like. I think we just have to follow the rules really strongly that our governments have been issuing. Cutting corners isn’t going to work.

I’m sure I was encouraging some people at the turn of the year that 2020 was going to be better than 2019 because 2019 had been so bad for them. How wrong can you get??!! :grimacing:

Love to everyone.

Omnia vincit amor.

Andrà tutto bene.

Richard

Well I’m TJ from Mod Support. I have auto immune disease and am Immunosuppressed. Not to mention old. The fact is I haven’t had time to think about this (though I do all the time lol) At least 2 of the 4 Mod-Support team members have been online 24-7 for the last week or so. between calming folks down and the massive Backpack project you are all prolly sick of hearing about we have been very busy. Personally I have been even more busy. At home, My amazing wife has been shepherding 8 others including a month old with closed Spinal Bifida, her mom with lupus and her Partner who has been working 12 hours a day cooking for a pickup food stand at the local truck Plaza (keep them truckers trucking) between that and my work with Bens Friends, I have been at my wifes business constantly since Sunday (when I took a break and painted bathroom for some mindless diversion) I also have my BF office there. My wife is homeschooling 4 (two of our grands and two neighbor kids) So why am I at the business? Don’t laugh, but we just happen to distribute commercial Jan-San supplies ie toilet paper and disinfectant. After stocking the hospitals, nursing homes, jails, and group homes we opened those supplies to the general public. Through it all we have been able to mostly control our exposure by having no contact with customers they call from the parking lot, we run their CC. and we then run their order out to the hood of their car. None the less its been crazy. Here’s the funny thing. Though I am beyond exhausted, I’m loving every minute of it. Somehow no matter how this turns out, the idea that despite my disability, that I am able to contribute to my community and The BF community, is absolutely amazing. Hang in there everyone AND Wash your hands lol

And I’m Seenie, from ModSupport as well. I’ve been “under the radar” for a bit. First I was on vacation (one of my bad habits) and then I went into hospital for a spinal fusion. It went well, but my recovery has been slow. I’m still not sleeping well, probably related more to current events than to the hardware in my spine.

I have no nearests or dearests who are in healthcare, but I worry for those who are. And I worry for those who are worrying about them, and I have several friends who are in that situation right now.

Yesterday I came across this article, about staying sane in times that aren’t. I’m wondering whether it has enough good information in it that our members would appreciate being able to read it.

Keeping busy is a good way of staying sane, and as TJ noted, busy we are here on the network. I am slowly regaining my ability to sit in one position for more than a few minutes, so this is one of my first posts in a while. And, like TJ, I very much value having the opportunity to help make things just a little easier or better for others who are having a difficult time. (And I’m older than TJ. I do not know how he keeps going!)

We are fortunate to have this place and each other. It’s quiet, orderly and respectful (most of the time!) and I hope that people will see their Ben’s Friends community as something of an oasis in these troubled times.

Stay home, stay strong and check in often. And don’t forget to wash your hands.

Seenie from ModSupport
PS TJ127: Sorry, I went off piste with this one.

Seenie,

You did what? Sounds like a personal problem…

TJ

Hi, I’m John. I was first diagnosed with my AVM in May 2016. I am finding this pandemic quite troubling and generating a lot of work and having an interesting effect on me and my family. My wife is working from home and my two teenagers are home from school, this is for three weeks as it stands but we figure the school year is over.

I am most concerned about the current spread of COVID 19 and the effect on the vulnerable. The biggest concern is the seeming lack of caring for the vulnerable among some populations.

But I really like the fact that spring is coming and right after that summer!

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Hi Guys, I’ve been out of the loop for a while. Brief review: avm left frontal, bleed, 2 craniotomies, eplilepsy (gran mal) for 46 years. Enough about me, I hope you all are holding up well and staying safe. I’ve given myself permission to do nothing but the barest essentials. I’m too lazy to even get depressed, walking around crumbs rather than sweep, the biggest decision I make is what movie to watch.
Ironically, good thoughts percolate and stuff manages to get done anyhow. Go figure! Greg

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Greg - when did you discover the AVM? I think I might be able to hand off the title of “oldest AVM in history” to someone else!

In the summer and fall of 1978 (yes the peanut farmer was president) was when I was diagnnosed and had substantial surgery at May Clinic. That puts me at 42 years.

Seriously, glad you’re around to share your story.

Best line of the day, as I’m concerned, “I’m too lazy to even get depressed.” I’ll say more in another topic later, but I’m stuck in a nasty rut where i know I should be more active but every time I try, my head gets very unhappy for quite a while.

Thanks for dropping by, keep in touch.

TJ

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Hi TJ, I had my bleed when I was 14 skiing. (1973) My surgeries ~7hrs. each were definitely cutting edge at the time (pun intended.) Done at Yale, New Haven. They thought it was spinal meningitis at first b/c the spinal tap revealed blood in the spinal fluid.
Those were definitely not the days of minimally invasive procedures. They sawed half of my skull off and when they were done they stapled it back in place. Then after some fun arteriograms (each requiring stitches in various places), they figured they had to do everything all over again b/c they didn’t get all the bad arteries. That lead to a life of epilepsy/grand mal seizures.
Boy, this story is perfect for Easter/Passover. I came very near death and was reborn the beautiful butterfly that I am today. (Alright, let’s forget about being beautiful or a butterfly. hahaha)
It probably shouldn’t surprise me or anyone else that I’m a tad weird.
Everyone here seems courageous to me. But in my own eyes I’m cowardly and ungrateful for all the good I’ve had. And I can be tough on myself saying I should have worked harder and not lost opportunities that were offered to me on a silver platter. But part of me says, “it’s true pal, you blew it.”
At least I can empathize with you TJ and let you and everyone here know that I’m pulling for you. Greg

Greg,

We definitely need to find a way to encourage you not to go so hard on yourself. By the way, we have the following sign in our kitchen (and I think of our family as a bit like the Munsters)…

Very best wishes!

Richard

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