AVM Survivors Network

Friday Filings

Hey all,

Hope you’re all managing to navigate this thing called life. Sometimes it feels like it’s managing us, doesn’t it?

Did you know that a hearing before a SS appeals judge can give you a raging “hangover” the next day? Don’t ask me how I know.

Did you know that when your mom asks you, every time you see or talk to her, how you are doing, it’s hard to be reminded every day that you’ve got this “thing.” Especially when you are trying as hard as possible to forget about it.

Did you know that having a chronic headache (or a concussion or any other TBI) can have a very substantial long term effect on your cognitive abilities?

Did you know that when it takes 6 months to get your insurance and your doctor to make a referral to the neuro-psychology clinic, it’s kind of disheartening to then find out the first available appointment is March 3, 2020?

No, that’s not a typo.

Did you know that doctors keep a waiting list of people who want to get in sooner? And they actually do call sometimes?

We were supposed to go to the doctors at the U of M in Ann Arbor on Wednesday. Approximately 4:00 on Tuesday, the neuro Psych people called and said we have a cancellation for tomorrow morning. Can you be here by 7:15 am?

Quick agreement to make it happen and then calling the other docs to reschedule their previously set up appointments. To their credit, when I told them how far up we were moving the appointment, the schedulers said, “Oh my goodness, I am so glad you took that appointment.”

Did you know that four and a half hours of tests is a lot for even fully operational people? Did you know that for us it’s downright exhausting? and you They were short term memory tests, logical reasoning tests and a lot of other tests of that type which I have no idea how I did because they explained that they were going to test me to fail. In other words, I’ll do math problems until I can’t do them any more etc.

Did you know that I felt like I was in the TV game show, “Are you smarter than a 5th grader?” I still don’t know the answer to that question.

Did you know that after 4 hours of interviews and testing, my voice basically acted and sounded like I had just left the Super Bowl and cheered one team on a lot?

Did you know that this is an “anniversary” of sorts? September of 2018 was when we filed with the appeals court asking them to overturn Social Securities original denial of benefits. Waiting for 12 months after waiting 7 months for the original response. sigh

Did you know that I’m out of questions for the afternoon?

Stay strong and as much as you want to give up, remember, we’re all cheering you on and you don’t have to know what your 5 year or 10 year plan is. Heck, if you know what you’re doing tomorrow, that’s a good thing right there.

I don’t know if we have any Irish folks on here, but I’m going to wrap up these wramblings with an Irish blessing:

May the road rise up to meet you.

May the wind be always at your back.

May the sun shine warm upon your face;

the rains fall soft upon your fields and until we meet again,

may God hold you in the palm of His hand.

(lifts a glass of ice tea to all of you)



Sorry to say this TJ but, yes, I do know.

The hangovers are nasty. At least if it was the drink I’d have an excuse
The repeated and continual questions are nasty. Simple, I just don’t know
The loss of cognition is nasty. And who are you??
The waiting for dr’s appointments and govt depts is nasty.

And no, I’m not smarter than a 5th grader and if it wasn’t for my wife reminding me, I’d have no clue what I’m doing tomorrow.
And How do I know? because I too have been on that (not so merry) merry-go-round.
It really infuriates me when some people think we choose to be ‘here’. Who the hell would choose this ??? Not I, that’s for damn sure!!!

(Ice tea??? Now, come on TJ, I need something MUCH stronger than ice tea :wink: )

Merl from the Moderator Support Team

First, thank you.

Second, thank you.

Third, I wrote this prior to 5:00 PM my time

Fourth - have you ever heard of a Long Island Ice Tea?

And thanks for putting a smile on my face…


Long Island Ice Tea is certainly BETTER than another version called an Arnold Palmer

@Merl My Favorite recipe:

  • 1/2 fluid ounce vodka
  • 1/2 fluid ounce rum
  • 1/2 fluid ounce gin
  • 1/2 fluid ounce tequila
  • 1 slice of lemon
  • 1/2 fluid ounce triple sec (orange-flavored liqueur)
  • 1 fluid ounce sweet and sour mix
  • 1 fluid ounce cola, or to taste

Merl, Long Island Ice Tea slides down ooooohhhhh so easily. Before you know … you’ve got a hangover. LOL


Yeah but it’s a hangover for a reason, as opposed…

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LOL or you’ve got two!

Believe it or not, I have had two headaches at once. Left side, pretty much the whole left half was a persistent annoying dull pain - the kind that slow you down, make life less joyfilled, but they don’t hurt bad enough to make you want to hole up with comfort food and binge watching Netflix.

The right side echoed the left but then Added a nice throbbing up and down all across the right side. The doctors thought it was strange and that it was probably the nerve damage on the left side blocked the throbbing that is happening on the left.

And my apologies if some of that is hard to understand. Thank you

Hey TJ:

I can answer “yes” to almost all your statements. It feels good to know that I’m not the only one! I want to join your Long Island Ice Tea group. You guys are the greatest and I love your sense of humor blended with a dash of truth! Best of luck to all of us.

Sharon D…

Glad that’s over with for you! I went to Fishersville, VA for mine. It was test after test after test. All the while after failing yet another test, I was exhausted. But it helped in the filing for social security. According to my docs and DARS liason, it was determined that I cannot continue in a 8-5 desk job. That’s was the bad news. But it did free me up to spend more time with family and friends. Also it was providential in my opinion, because some months later I lost vision in right eye completely and partial in the left!

I say all that to say, there are those who know at least some of what you’re going through! And because of that, wish you all the best! Thoughts are with you sir!

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Awww, Sharon, you are going to make me blush…,

I do like the idea of a Long Island Ice Tea club. A virtual salute to the guys on “cheers” (old American sitcom took place in a bar. Hmmmm… wheels are turning but slipping a bit this time of night.

The lady giving the tests said they design them to fail. In other words the farther you go, the harder it gets - i’m Glad she told me because otherwise I would have felt like a failure.

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A post was merged into an existing topic: What do survivors of AVM’S do for work?

Reading all these, put a smile on my face :blush:

It’s been 9 months since my craniotomy, still dizzy, confused, disoriented, headache, but so very much grateful for everything.

Still wondering, can I still work?

Have nice monday to everyone :smiling_face_with_three_hearts:


Merl… you are so correct if my wife wasn’t reminding me what I needed to be doing everyday I’d probably forget what year it is… literally! :slight_smile:

It’s 2017, right?

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I find this funny but after my AVM ruptured and I woke up in ICU they ask you the standard questions of your name and what year it is; at that time it was 2015 I said it was 1961. I got a lot of worried stares looking at me other than my wife who was smiling and she goes hey you got my birth year right so we’re still good… she said I’ll buy you a calendar but as long as you remember my birthday I’ll keep you around! :slight_smile:

“I find this funny…” ??? I’m a bit the same ( at times) like ‘Doh, I forgot AGAIN…’
That was until last week. I’m usually fairly good with important dates b’days, anniversaries etc. Last week I forgot our anniversary. First time in 24yrs that I forgot it. It’s the anniversary of when we first got together so not a REAL important one but the wife reminded me 2 days later. Ouch, that was a bit hard to take. I keep telling her when she forgets it’s an old age thing (She’s HEAPS older than me :wink:), so she had to rub that one in a bit, which under normal conditions would have been fine. But when you know your memory is bad being reminded of it sucks.

Merl from the Moderator Support Team

That reminds me of the last time I had a seizure back in 2012. The cause was was my medication was changed to generic instead of brand name. The EMT asked me some questions. Most of them I got. First one was are you okay. I said yes. Second one was do you no where you are. I was at the movies so said movies. Then the funny ones started. He asked what’s today’s date. I laughed and said I no it’s Saturday and it’s February but no I don’t no the exact date. Then when was brought to the hospital one last crazy question the doctor asked was for me to say the alphabet backwards. Funny part is I no it backwards because my neurologist said they might ask this question if you have a seizure. So passed it and the reaction of the doctor was funny because he said that I was the first to pass that test.

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For me I absolutely have to find the humor in these situations as I refuse to have a pity party for myself; I have strong support from my wife and daughter and though they get irritated with my short-term memory at times it is what it is and I just have to laugh about it and try harder next time generally through Post-it notes and a calendar on my tablet.
None of us chose this for ourselves we just have to roll with the punches and put one step forward each day and make the best of a bad situation…for me it’s through humor and sarcasm… :slight_smile: