Back for a coping mechanism rebuild

[scobb]

I thought I could get by without WSA, but I'm back. Not that my IS got better, she did not. But over time I had managed to build a mental coping mechanism. Sadly my coping mechanism is now in the shop for an overhaul. It had started to leak blood, sweat and tears. (Okay, that's a bit melodramatic, but hopefully you can probably relate.)

I can't find my last post here but I think it was about 18 months ago. Like a lot of people my first posts at WSA were tentative. I wondered if my IS was actually ill enough to warrant me being here. Other WS seemed to have it so much worse than me, and some had been coping for much longer, years and years of it.

Well now I have years-and-years under my belt and maybe some accumulated experience that might be helpful to others. But it also appears that I still have a lot of coping left to do. And I realize I need a place to share with others who face daily challenges that are similar to mine. And really, there is no place like WSA.

A lot of my wife's problems stem, it would seem, from hereditary hemochromatosis (HH), a condition about which our country [America] and our medical professionals, are for the most part woefully ignorant. So one of my coping mechanisms has been to throw myself into raising awareness about HH. I created Facebook.com/Hemochromatosis. I created a blog called CelticCurse.org (because Celtic Curse is a term used for HH). I got to know the wonderful folks at the Iron Disorders Institute (HH is an iron metabolism disorder). But I think I wore myself out with all that, and neither a blog nor a Facebook page is a substitute for a forum like WSA where people can share at this level.

A good but geographically distant friend called last week to see how things were and I told him the latest, that my IS probably has Primary Progressive MS, and when he asked about the outlook, I found myself talking about things like "she'll steadily get worse then die, but the MS website has some greating coping resources" with a detachment that clearly shocked him. When I explained some of the WS/IS dynamics, the "living with this stuff every day" state of mind, then he understood. He's a good friend. But he reminded me I need to spend more time with others who are in this strange space we call coping.

So I'm back.

[LarryB]

Welcome back

(((((scobb)))))

[scobb]

Thanks Larry -- I am noticing that the forums are looking really good and seem to be working more smoothly than before...and I realize where my older posts went.

Tell me if I imagining this, but it seems like one used to have two identities: a membership ID and a forum name?

I am happy to be know as scobb, so that's not a problem, but I think I used to have an ID called Mawg or something. Or have I now finally entered a parallel coping universe?

Stephen

[Dorothy Saunders]

I remember a guy named Mawg.
Be you Stephen or Mawg, we are glad that you've returned to our safe haven.
Yes, lots of upgrades to the site, and you are correct that now you only have one identity here.
I can relate to coping by feeling emotionally numb so that you can manage to accomplish all that needs to be accomplished and then some. Bless you for starting the blog and Facebook site to educate others; now let us nurture you.
Welcome back.

[qtrhrsemom]

I remember you too, Mawg! Welcome back!!!

[tundra lodger]

Welcome back, Stephen!

So, how does one construct a coping mechanism that lasts for 18 months without a rebuild, anyway????

Anywho, glad you made it back.

*bigolehugz*
tl

[scobb]

Thanks everyone! Messages much appreciated.

(And I think I will stick with scobb/Stephen.)

Stephen