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So, is it just me? (Of course not, but....)

So, is it just me? I mean I know the answer, but still, it makes you wonder…

Last week, I met with my counselor and we talked openly, honestly and deeply about where I’m at and what things are looking like. I have a social security hearing on August 28, so I’m kind of nervous about that - but at the same time more than ready to move from this “on hold” to at least seeing some of what the future might hold.

So there’s that - and then there’s that question - how do I feel about having the government officially saying, “You’re disabled?” I mean I know I am, I know that I couldn’t do what I did. It wouldn’t work. But the label still bothers me…

And then there’s the ever changing list of priorities. Out of the the multitude of “issues” I’ve got going on, it always seems like certain things “rise to the top” in terms of priorities. In my discussions with my doctors and my counselor, let’s just say that the emotional side of dealing with it all - dealing with the grief of what I’ve lost, dealing with the changes going forward, dealing with spending my life in pain and all of that is currently the most pressing issue (don’t worry - this is not a serious cry for help I’m okay and I promise you I will stand up and scream and post all over here in bold letters if I felt that I was leaning that way. )

So, my counselor and I decided I needed to get back to my psychiatrist because there’s a real strong likelihood that my depression and anxiety over all of this . So, I call my psychiatrist to try to move up our next appointment - and he took another job inside the institutions - he’s going to be training their resident physicians. And the first where they could get me in with the new doc is July 11.

Three months. Because my doctor changed jobs. On the one hand, I’ve got time - I don’t have much beyond time, but I also have a hearing before the judge and the more medical people I can get who can tell me how screwed up I am, the better for that. So is it just me that gets stuck in these type of “waiting periods?”

How do you deal with the waiting? How do you deal with the feeling of, “oh crap, I know I can’t work but what if they don’t approve my benefits?” How do you deal with not being able to get a specialist when the neuro psych Doc’s are booked until January and the the “regular psych” doctors are booked out at least 3 months. How do II work around that?

How do you work on learning to live with it but also not sugar coating it so the docs report it correctly?

Because, really, I can wrap it up with a really pretty bow and glitzy wrapping paper, but when you open it up it’s still a pile of cow manure.

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TJ

I struggled with the waiting all the way from diagnosis to operation and for me, the mind fills with all the stuff you’re worried about when it has nothing else to do, so I set myself a project to do through the last 3 months of my waiting. It is a useful thing to distract the mind with something to keep it busy, and I would say interested.

I’m crazy. And I’m an IT guy. So, what did I do?

I built an electronic clock from first principles and I got it to synchronize with a radio time signal in central Germany. I’ve never successfully done any electronics before, so it was a real challenge and tested my brain. I really wanted to be thinking about something else and it worked for me.

So… find something interesting that your mind can be thinking on, rather than being full only of housework, chores, the noise of the dogs and the kids.

Hope this helps a bit.

Oh, and mid July is less than 2 months away, so I just fixed one month!

Very best wishes

Richard

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Something that helps me from the Bible is [Isaiah 40:29-31
“He gives strength to the weary, and to him who lacks might He increases power. Though youths grow weary and tired, And vigorous young men stumble badly. Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.”

Praying for you as you wait!

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I still have a hard time with the term disabled.
I don’t really use it even though the government does. I just say I have deficits I need to overcome. the hardest part for me was when I finally got disability they determined that I was mentally impaired and could not handle my own money so my wife had to be set up as a fiduciary to control my disability payment ; being a finance guy that was a big pill to swallow for my ego and maybe I’ve overcompensated but I’ve detached myself from things that I can’t control and I just don’t worry about them as I don’t have any control over the outcome. I basically have the attitude I will do as much as I can and let the chips fall as they may and deal with it when it happens because I don’t have any other choice…

Ouch, Mike! That’s really difficult.

At work some years ago, we introduced a number of support groups for different people, with a view to demonstrating that the company was very inclusive (and the only way to know if you’re doing the right things is to do it, be open about it, and see how many people you get taking an interest in each group). At the time, I was a white, middle aged, broadly Christian, straight, able bodied man and probably didn’t fit into any niche group that the company was trying to set up. Everything was inclusive, so you didn’t have to be a woman to take an interest in the women’s group, etc. I joined the “enabling” network which was the disability group. As with doing anything that means you see life from a different point of view, I found it really interesting, fulfilling and educational. One of the things I learned was never to refer to someone as disabled but to ask them about their impairment or if they used a wheelchair, the term to employ was (as it says) a wheelchair user. So this was advice on how to say some of the right things in the UK about 10 years ago. I’m working somewhere else these days and we do not have the same groups running, though I’ve volunteered to HR to support the impairment group if we ever have one.

“Disabled” us such an old-fashioned term, it is time we got rid of it. I might technically accept “dysabled” (meaning difficulty with an ability) but “dis-” means without, or removed or something like that and it is too monochrome, too absolute a term.

Very best wishes always,

Richard

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