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AVM Survivors Network

When to say When


#1

Hey all, Been quiet on my end. Mainly because I’ve been trying to adjust to the reality of having to wait another year for social security but also because, well how’s the saying go, “if it weren’t for bad news, I’d have no news at all?”

Nothing earthshaking, but the Occupational Therapist said that my eyes are in bad enough shape if it were up to her, she would put me on limited driving. I and my family are all noticing signs of memory loss, worse speech, vision, extreme fatigue, it’s just all going the wrong way. and then the OT refers me to a Neurological Optometrist because she says I have double vision both ways (up and down and side to side) -or is that diagonal vision? I don’t know. And there are other neuro-eye issues too. Filling out paperwork for them - out of a list of 50 possible symptoms I could be experiencing, I have 38 of them.

I have a full time job trying to take care of my own health care.

No, when to say when is not a cry for help in the sense that I’m planning to hurt myself, I’m not. If I was, I would scream it loudly on here, I promise. It’s asking for help - how do I get things set up so that there’s a medical person who is managing all of this crap so that I don’t have to try to heal and try to deal with insurance at the same time? I can’t keep up on both of them…

Any ideas?

Steps down, doesn’t drop the mic, just hands it to the next person.

Tom


#2

I understand completely; I can no longer work or drive and it puts a lot of pressure on my wife to handle the day-to-day stuff like that; you probably need to contact a disability lawyer like Allsup, they did a good job for me at a reasonable fee and they take the fee out of your settlement.
just keep fighting, it doesn’t get much easier when you lose a lot of your Independence you just have to learn to cope with different things in different ways.
best of luck!


#3

I’ve read this and walked away to have a bit of a think of just what to say.
So, Now I’ll take the mic. lol
Firstly I must agree with Mike5, its a lot of learning different ways to cope and manage. Over our lives we learn ways to do things and for some of us (me) we get set in our ways, then along comes something that means our previous ways/skills are not possible and we have to learn new ways and adjust. That can be real difficult especially when it comes to losing some of our independence. Personally I rebelled against change and tried to force myself to continue as I was, at the same pace and eventually my body gave me the two finger salute. I have ‘now’ learnt that I can’t continue, I can’t do as before and I really have no choice but to adapt. A BIG part of that adaptation has been asking for help, and that was hard. But once I accepted that fact things have become a little easier and not as stressful.
There are a couple of steps I took that may assist-
Insurance companies- They can be complete and absolute B$#@%^* to deal with, they will try to make you jump through every hoop and loop possible. I initially tried to do it all myself and thought all was going well, but once they realised I was doing it all myself they became more an more obstructive. Eventually I told them I was going to get a lawyer involved “Ohh don’t do that” they told me. I found a ‘No win, No fee’ lawyer and they dealt with it all. I had to attend 2 medical assessments (both of which I failed) and I received my payout.
A medical advocate-Get yourself an advocate, separate to a lawyer. In my former role I was an advocate for my clients and thought ‘no worries, I can advocate for myself’ but being one’s own advocate can be difficult because we naturally have an emotional connection. As an advocate there needs to be an emotional disconnection so that the information provided is factual and not swayed by emotion. The legal requirements for you in the U.S. are a bit different than it is for me here in Oz, but here is a couple of links that may help. The first is a bit of a rundown on medical advocates and their role. The 2nd is the specific form required for your state to appoint an advocate.
https://www.npsf.org/page/patientadvocate

The final thing I want to say here is that asking for help IS NOT a sign of weakness, in fact, it is exactly the opposite. It is a sign that you have identified that you need assistance and that is a HUGE step. Us, males, often think we can do it all (well, I did), accepting that we need help is not easy. But for myself it took such a load off of me, so that I could once again look after me and that was what I needed.

I hope it helps
Merl from the Moderator Support Team


#4

Asking for help is the most important thing you need to do; though it’s difficult as I still don’t do it consistently because I always figure I can do this but at a certain point when frustration sets in you have to reach out or you’ll never move forward…