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AVM Survivors Network

Am i alone?

Idk if I’m doing this right or not but I’m new here and I want to know if anyone else suffers from bad mental health problems. I used to think that if you were depressed or sad or whatever to just get over yourself and tough it out. I am now a firm believer in mental illness and have become a big advocate. I suffer from bad depression, suicidal thoughts, anxiety, etc. I am so tired of living for other people because it would upset them too much if I weren’ here. I can never get any relief and it feels like the role is constantly weighing on me. I hate that I survived such a traumatic event like my hemorrhage and now I can’t even be happy and grateful of this life. I know I am so blessed to still be here but I can’t find any happiness anywhere.

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Hey, @DogLover34

You’ve had a big trauma in your life. It’s not surprising you’re finding things pretty difficult. I think it is pretty normal to find life difficult and you’re definitely not alone.

For myself, I’m pretty good but the period between discovery of my AVM and getting through the embolisation and recovery (which took way longer than I ever thought) were difficult times.

The other thing I think is that people don’t talk about mental health difficulties and that is part of the enemy. We need to be able to talk about how we are.

Have you got access to any support where you live? Have you talked to your primary about how you are?

Sending you my support,

Richard

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I have learned so much from going through my bleed and follow up, by being here with an incredible group of people who understand when I don’t. I have gained an understanding of the unseen illness, the fact people think I looked fine, I must be fine, and the ever popular that everyone gets tired. This understanding has helped me reach out to support when I need, to not be afraid to sit down and have that conversation with a professional.

We are all so different, but often have some similarities but to me it was the understanding that I looked fine but wasn’t. Know we are here for you in anyway we can, and that there is a lot o experience here among our group in many challenges. Take Care, John.

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Well, I know one thing is right - if you’re a dog lover, then you’ve got that going for you. We have two YorkiePoos and a Maltese - the Maltese was adopted from friends of ours who are missionaries in Haiti - so we have a white dog named Solomon who was adopted from a Caribbean Island where, last I heard, 99% of the residents (as opposed to missionaries) are black. Oh and this dog named Solomon is, shall we say, intellectually challenged (for those who aren’t up to date on Bible history, King Solomon is known for his wisdom).

More to come later.

TJV

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Oh and in terms of dog lovers - my dogs have taught me a lot about what true love means. They are such good therapy for my wife and daughter - they come home from a bad day at work and the dogs greet them at the door all excited to see them. I do like having them hang out in my man cave with me when I’m writing and no one else is around, but they bark too much and some times it is too painful for me. That’s why the man cave has a working door on it.

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Okay, maybe I can finish this up in one last writing. You are so absolutely right that people don’t want to talk about mental health. Between me, my wife, and my adopted kids, we have variations of ADHD, BPD, RAD, Trauma, PPD, and I have generalized anxiety (I hate that word) - to me it means, he’s anxious, but we don’t know why… 'Depression - if you have read my file, there are plenty of reasons for a depression diagnosis. “My Randy” and I have been meeting on a regular basis. In addition, I have a very effective e-mail arrangement with him and we’re able to accomplish a lot that way.

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You are definitely not alone. All of us struggling with these difficult situations have had trauma and worry and pain. Reach out, and maybe talk to a counselor? The help and support here is invaluable. Hang in there, and be kind to yourself.

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I recently started talking with a new therapist via facetime now that the semester is over for my school. And you are exactly right that not enough people talk about and address mental health issues. If you asked me 3 years ago I would have probably made a mockery of issues like that but I have completely changed and want to showcase that to others.

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I also have 2 dogs and they do help a ton but now with quarantine and having not found a job yet they are so needy haha. Karly (7 F) is a german shepherd rescue that only likes my mom and I and not my sister so we had to get a (?F) small white dog for my sister so she doesn’t feel too left out. Do you have any recommendations to get out of your own head when you get down on yourself?

Thank you for the suggestions! I recently upped my counselor meetings to two times a week and I should hopefully be getting prescribed medication on Friday. Have you taken up any new hobbies to get your mind off of all the worry and pain etc.?

Being outside in nature is always healing. Dogs are the best!! And I have really increased my mind fullness practices. Staying in the present moment…appreciating the here and now…so hard to do… but it helps. I read Full Catstrophe Living by John Kabat-Zinn. Very good .

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Hi. Getting a hobby to stay busy is quite good. An empty mind is one inclined to fill with worry. I needed distracting most while waiting for my embolisation to be scheduled and I felt I was getting more poorly as the weeks went on. I was also not allowed to drive at that time, so getting out or buying things for a hobby was more difficult (a bit like it is just now). I have to say a plethora of little companies kept me on tenterhooks as I designed then bought parts to make a radio-controlled clock and had to wait for each package to arrive by post! I’m not sure doing an electronics project would be for everyone(!) but the fact it needed me to think properly about it I felt meant that I was working on that rather than just worry. It definitely helped. Something that requires a bit of planning or thought is good.

I’d never successfully done an electronics project but now I can say I have!

It’s good to know you’re hooked up with a counsellor.

I do think we live in an age where, even if we can’t get out of the house, we can still do things that could impact others. This platform is one example of us being able to touch the lives of others, though we may all be locked indoors. That we are limited in some ways doesn’t need to block everything.

Very best wishes,

Richard

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Recommendations? My recommendations would fall into four categories:

  1. Write for myself. These are password protected and no one can see them without my permission. I’ve told both my wife and my therapist that I will give them the password if they think it would be necessary or good for me to have them know that. They haven’t yet.

  2. Write to my AVM groupies. You know who that is? All of the people who read and comment and often reach out quietly and say, “I hear you” and sometimes don’t say much. But you’e there. And. You. Get. It.

More to come but a call came out for my referee skills between child #4 and #5… I’ll be back…

TJV

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continued - get a therapist. A professional you can talk to and be angry with and cry with and he’ll say, 'bring it on, I can handle it."

I don’t know if you have religious leanings, but if you do, find someone, clergy, minister, elder whatever title - someone who you can talk with and walk the spiritual ‘muck’ that it feels like you are slogging through.

Start a blog - write whatever you want and who frickin’ cares if anyone ever reads it. That is your chance to take your story, your life, you difficulties and put them and what you’ve learned and package it all and make it available so that someone who might benefit from hearing your story has an opportunity to benefit from your story.

I’m not saying this to brag, goodness no, but I can honestly say there is probably an 80% chance that my writing online saved the life of one of us. I was and still try to be open. In telling my story, I mentioned a couple of times that I’ve been a patient at Mayo. One of us contacted me privately because he was debating whether he should go there because he did not feel his current doctors were doing what was needed.

We talked a bit, I gave him my unbiased opinions - Mayo is a phenomenal place - about a month later, he wrote me to let me know that things were in process to go there. A few months later, he wrote me and said, ‘TJ, thank you. In large part because of your advice, I went to Mayo, they are wonderful and they did this and that and the other thing and then told me, "Go home, you’re done, it’s gone.’

Because I shared my experiences, someone else is going to be able to experience more of life. Every time i feel down, this story makes me realize that we are all part of something bigger than ourselves.

TJ

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Hobbies - my main hobby that i’m able to do at this point is write. i have three books 'percolating" in my brain. “The Starfish was wrong - and 25 other things white adoptive parents do to screw things up.”

“I’ve got a spaghetti bowl in my head…” "My 42 year battle with an arterio-venous malformation and the things that I’ve lived through and inspite of along with some of the multitude of things that i have learned from this battle.

i would love it, if a storm would blow down the hard walnut tree in the back yard (probably 50 ft tall) because it would wipe out the old rickety chicken coop that’s right next to it. At that point, our insurance would cover building a 2 stall garage back there and i could have an office in it and time and space to pick up some hobby projects. But alas, we don’t have the money to do it without an act of God.

TJV

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Double :heart: :heart: TJ

I want to sit down and read the whole feed. At first glimpse, I thought this was something I posted back in the day. These feelings lasted 3-4 years for me. These days, I do do some living for myself and not just my boys. And I don’t wish for death. But, I will be happy when it gets here. I’m on bupropion (Wellbutrin) 2x day. It never got any better. But, I did get stronger. And now it’s not so bad most of the time.

I’m glad you found this place. And I’m glad you posted. For some reason I do better knowing I’m not alone. There’s strength in numbers.

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For sure. having found this group i feel such a sense of relief knowing that i’m not alone. i never thought I’d see a day where i could talk to people who have been through much of the same horrors.

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Hey dog lover, you are too young to have suicidal thoughts. You need to occupy your mind. Don’t you have true friends to keep in touch with and to buck your spirits up? I had a ruptured avm in my brain eighteen months ago and was airlifted to hospital. Before that i didn’t know i had such a thing. i was also told it was inoperable as any operation would likely leave me worse off. So i survived and ultimately reached out to whomever would listen to me. I am lucky in that i have some. wonderful friends who may not live ‘next door’ so to speak but there is always the internet, telephone, facetime etc. Plus i have two wonderful westies and it is my job to outllive them as they need me to look after them! Even during this covid pandemic and lockdown there are many things to be grateful for so find something you enjoy doing, find a friend to talk to not necessarily face to face. I have a friend who lives many miles from me but emails every day with thoughts and daily doings and with whom i can share my inner thoughts. Life is worth living. You just have to find what you enjoy and gives you pleasure. Keep smiling and good luck.
Susie

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Not sure Im the best person to help. My AVM’s 9 in total we extremity 15 surgical visits plus angios etc. Depression,Anxiety,Anger,Rage I felt all sometimes back to back. The traumatic experience of a AVM rupture can’t be explained or understood. Unless you’ve been there I read somewhere AVM’s are like 1% of all the world population damn right were alone except here we all understand as survivors. We truly care and we love one another even having never met. Are pains share the same face.for me to xome back to me I went to the wood spent quality time with nature away from everything helped me regain myself and my perspective. I love you hang on better days are coming for us all.

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