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AVM Survivors Network

Thing 1 and Thing 2

Hey all,

Thanks for your prayers, thoughts, notes or lifting a silent glass of the good stuff my way. It was appreciated today (well, every day, but especially today) as we went to the Social Security office for a hearing before an “administrative law judge.”

I felt very good about it, didn’t have any problems with being nervous and felt that my tongue/vocal cord issues were present enough to create a good case in and of themselves. The judge never commented on my black eye and that was okay.

Three things I wanted to share - because I’m quite certain that others of you are in the process of appealing a denial with our friends at Social Security.

Thing #1 - I don’t know if they were documents that my attorney created, but either way, I ended to provide a detailed history of my doctors appts, my meds, and a complete and detailed analysis of what I’ve done for employment the last 15 years - focusing mainly on the skills involved. For instance, my job as a banker was 80% sedentary (sitting at a desk) with lifting 20 lbs quiet often during the day and spending approximately 95% of the day talking about detailed financial transactions. And then explain why I couldn’t do that job - because I would need ______ breaks and I would miss this much work because of it. I don’t know if you remember, but when I wrote mine up, it took 24 pages and 19,000 words.

But, both the judge (twice) and the “vocational expert” (in quotes because I don’t remember the official title), commented during the hearing how much they appreciated the detail and the time I took and how it makes their lives easier. When you can have the judge thanking you that’s a good thing.

Thing #2 - Keep very detailed records. I didn’t, but fortunately all four of the organizations that accounted for probably 90% of my care have an online patient portal, I can look at that to make sure I have accurate dates etc. for Thing #1. If you can keep a journal on the appointments, that’s all the better.

Thing #3 - The laugh for the day (sort of):
Judge to Vocational Rehab expert - “So, do you know of any jobs where you can work in an office , take 15 minute breaks every hour and do it on a 4 day work week - oh and you can’t tell in advance which day the “no work” days would be, plus you would have minimal interaction with others?”

Vocab Rehab person - “No I can’t, your honor.”

Judge - “I didn’t think so.”

And at that point, he began wrapping things up and in 5 minutes, we were out the door - approximately 15 minutes early. So, my attorney is pleased, all signs look good and we should find out officially within 30 days.

In addition to that, we moved my 18 year old to college this afternoon and my mom into a “quasi independent retirement home.” All today.

I’m feeling rather hung over already and expect tomorrow to be a very much a do nothing day because if I try to do anything, I will pay for it. But today was a big day and a good day.

TJ

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TJ

I seem to be giving out "wow"s at the moment. You get a wow for various parts of that, not least that I agree you probably did WAY too much on Wednesday, so good luck with Thursday AND Friday!

Sounds good.

As one of my work colleagues says, you’ve followed the “6 Ps”: “perfect preparation prevents p*ss-poor performance.” You’ve done some of the best preparation and I agree it sounds like it will pay off.

Very best wishes,

Richard

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So very good to hear, TJ! It even sounds as if the judge may have “got it”!

You are so right about records and the importance of keeping a patient portfolio detailing, well, everything. This is something that we have been telling our members for years: sometimes that devil is in the detail that has accumulated over time. Sometimes you need the big picture to be able to crack your medical mystery. Sometimes a detailed medical/personal history can lead to specialized services and one-offs like clinical trials. Owning your medical history is super important.

Ben’s Friends (90% TJ) is working very hard to put together something that will give our members access to online services that will change their personal medical record keeping. Stay tuned: if we can pull it off, it’s going to be HUGE!

Seenie

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