no longer alone

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GypsyDogs

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OMG-

The people that studied my head a few years back, and diagnosed my condition- got me in touch with another person (a: 1) that also has PMO!!

and they may have a lead on getting one other guy in contact with us.

We have the makings of a 'support group' wooohoo
 
I also found "Post Menopausal Osteoporosis" but the "one other guy" reference kinda ruled that out.
Regardless, it's good to have support!
 
Permanent Meandering Obsession ?
I have that too. Sign me up...
 
The scientists abbreviate it PMO-  I abbreviate it 'Meta'  (Because they, the scientists, abbreviate a related condition: Prosopagnosia as Proso...so.. Meta)

The condition is called Prosopometamorphopsia.  aka 'faces look weird' It is extremely rare - as in, I know of 2 other people diagnosed.
But there is more to it than that -- it also causes unease, a sense of fear, and something like defensive hostility.

What is it like for me, living with Prosopometamorphopsia?
Imagine- you like people, but cannot look at them.
That, when you do, they look strange and it makes you feel afraid and angry.
As if you just found a snake or spider crawling on your hand, or you are suddenly falling.
Imagine this happens when you look someone you just met, or at someone you love.
Now- when you cannot look someone in the eye, how does that make you appear? Shifty? Deceptive, Disinterested?
Imagine trying to work a job. Imagine the anxiety of living day to day.
Trying to make friends- to Keep friends.
How they pull away, and distance themselves from your apparent deception and disinterest.
The depression of feeling So alone and disconnected from those around you- those you love.

Imagine this happens Every time you look at someone's face.


(and no, I don't see Dragons.. sigh)
 
Just the thought that there are a couple other people that have this- is .. liberating.
Knowing I am not completely alone = awesome.
 
Thanks for the explanation.
That would be horrifying.

Yes, knowing you're not alone is huge.
 
That IS scary. I hope you all find a way out of it !
 
Hi Glad you found some support! So I have what Dr's are calling eosinophilic fascitiis. It's also very rare, but not as rare as yours. They estimate around 200-500 people worldwide might have it. It's an autoimmune. I've since been diagnosed with Lyme and the lyme treatments are working so they aren't sure if I have lyme that presented itself as E.F. or what.......i've been to 6 hospitals, 3 in Boston and no one can make sense of my case. I'm basically a medical mystery!

Anyways, I found an Eosinophilic Support group on Facebook, when it started 4 years ago we had about 10 members and now we have 100. It's def helped to talk to others going through the same stuff, it feels lonely when no one can relate. Glad you found someone! Hope they figure it out and get you back to life as normal. Til then stay positive. My belief is there's a cure for anything we can get on this earth, just harder to find some cures than others.
 
It is a function of part of my brain, not a mental disorder.
There is no way out, any more than there is a cure for height or astigmatism.. It is a mechanical thing not attitude or thought.
 
The folks that studied me years ago have referred me to doctors/specialists a day's drive away. So me and the canines will need someplace to live while they study me. Hotels are stupidly expensive.
I would like to build a small cargo trailer as a urban camping rig. Unfortunately, in my area, used cargo trailers are about as common as free roaming elephants..
And a new trailer, with the few things I would add on to save time/money later, would run me $3500 that I don't have... sigh
Looks like the anxiety and crushing depression will just have to continue. :(
 
It's nice to read you found someone that can truly relate to your issues. There is indeed comfort in numbers and 'like souls'. I hope you find the peace that you are looking for. Here on this forum are many who seem to look at the person, not the problems. That said, I wish you the best and hope you find the peace you want and deserve. Rob
 
GD, isn't it weird how, even with very rare things, they want to study you (us) but won't pay for it. I have, and carry the gene for, ocular albinism. It's pretty rare and the docs are super excited about doing some gene mapping on me... but I have to pay all the bills and expenses, so a big NO.
 
GypsyDogs said:
Looks like the anxiety and crushing depression will just have to continue.  :(

I can't even imagine living with your uniqueness. I have my own that years ago a doctor tried to get me into a teaching hospital so he could explore at too much risk to myself. With other medical stuff piling on I can relate to your anxiety and crushing depression. I wish there were words that could give comfort.

I don't remember where you are so don't have a clue where you need to be for the specialists. I don't know if any of the tribe in s&b might be able to help out? Just an idea.
 
GypsyDogs said:
The condition is called Prosopometamorphopsia.  aka 'faces look weird'  It is extremely rare - as in, I know of 2 other people diagnosed.
But there is more to it than that -- it also causes unease, a sense of fear, and something like defensive hostility.

I had that when I was married to the last wife. 
With makeup she looked like an evil clown. 
Symptoms seemed to go away after the divorce.
 
Sigh- So they got me in touch with the other lady that has the same condition.. she emailed me, I responded (including questions and ideas) and then... nothing. Total radio silence now.

For those of you that think "gee, I go camping and don't see another person for weeks, so what's the big deal?" Remember, you choose to go where people aren't. I have had to live with this for years, in a large city, working a job.

And for to those for who joke about it- "Hey, lighten up, I'm just kidding around." Do you poke fun at people in wheel chairs and blind people too?

This condition is dramatically effecting my daily life and relationships.
So yeah, forgive me if I do not find your misplaced attempt at humor to be funny.
 
We got lucky- We will be paying off a big repair bill this weekend.. and our scrimping and saving has added up better than I had realized. AND found a trailer mfg that can get us a really nice one that has what we need (including the extra height for the Tall hubby) big enough for the 4 of us.. so we are going to order it. OMG- the joy! OMG - another build.. whee. lol

So, I guess, in a few weeks, y'all are going to have to put up with another build thread.

I may also have to be changing jobs soon- (I really dislike having insulting obscenities screamed at myself or my fellow co-workers- just because the boss is having a bad day) so that may free up more time for the build :)

My goal is to be RTR ready and able this year!! And the dogs and I will have a place to stay when I go to see the specialists in 'the big city.'
 

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