OT-- My Condition and My Situation

[MagnusTrask]

I have out off bringing this eye/neurological/chemical-allergy condition
(and my life situation) up here for the whole ten years I've been here on this board.  I have to start reaching out to the world through what few connections to the outside world that I have, meaning the Internet.  I don't have family to turn to, and my one friend's help is very limited. 

I won't explain much in this first post.  I can't.  I'm struggling just to get an intro written.  The severe neurological state I'm in makes forming thought and getting it said in words hard to impossible,  I just wanted to get the ball rolling, and get people's attention, so they know an important issue is happening, and that more explanation is coming.

I have to start talking, before my ability to do so goes away.  If DS Forums posters could tell me they're ready to hear it, please, that would help very much.  It's going to be very hard to explain, and any encouragement helps.

[Josette]

Hi Magnus,

It seems to me that if your problems are that severe, that surely a doctor would be able to document it better than you have previously indicated.  Anyway, sure, feel free to share as much as you are comfortable doing.  I certainly hope that someone can be of help.

[MagnusTrask]

People believe doctors can and will deal with any medical problem until they develop an unusual problem like mine, then often they spend the rest of their lives going from one doctor to another, being dismissed, often with contempt.  No tests have been designed that reveal causes for this, for one thing.  It's been 35 years.

I am not asking for DS Forum members to cure me or tell me what to do about the medical problem.

[Uncle Roger]

By all means, Magnus, please feel free to share whatever you like. I am certainly not qualified to advise you how to handle your situation but I am a good listener.

[MagnusTrask]

Thanks very much, Roger. 

I should say again that the private message function on this board works only one-way for me.  I can see your messages to me, but the board shuts down for me the moment I try to reply. 
embryorm@earthtones.com  (I have some trouble with e-mail but it's possible to talk there)

I'm on FB as one of several people posting as "Magnus Greel" (a DW villain).  My avatar and cover photo are very reddish, avatar has a very abstract minimalistic face (supposed to be mine).

In the past, people on boards have wanted some justification from me, that listening regarding my problem won't be a waste of their time.  Anyone who doesn't want to hear about this just because they've posted with me for years, and doesn't want to do it out of friendship, probably shouldn't.  I'm not doing this for advice or medical tips.  It will become gradually clear why I need awareness of all this from others, as the explanation comes out, but really, the reason is a basic, human one.  I don't think an elaborate "justification" should be necessary.  My story needs telling.

[Midnite]

MT, I think there might be a typo in the email you've just given.  Can you take a look?  If I'm wrong, please ignore.

[MagnusTrask]

I guessed that myself Midnite.  Need to eat then get back to bed ASAP, no chance to try it yet.  Don't know if it's private, should I type what I have?

[Midnite]

It's been changed to the address you posted this morning.

[MagnusTrask]

Oh, I thought you meant Patti's.  Thanks.

[MagnusTrask]

I have to hope that as I post more, more people will take notice of it.  It's not very entertaining, I admit.

I can cut all this into two halves, the condition, and the bizarre isolated disempowered life situation growing out of the condition.

It goes back to the early 1980s.  A milder but still painful eye problem was made many times worse by atropine eye ointment.  I don't intend to drown you in technical details.  Suffice to say it cramped eye muscles when it was supposed to relax them, changing their behavior permanently, so that smaller and smaller levels of light (and focusing of eyes on print) caused loner-lasting and greater and more painful spasm each time.  So the problem "snowballed" from this point on.

Also a severe and overwhelming "current" or "electricity" (probably literally electricity, since our bodies run on electrical current) results from light, and reading.  The more I aggravate this by reading or being in light, the more reactive I get-- so my life became about having to limit both very carefully.  The world really doesn't allow you to do that.  It demands you read and be in light constantly to function.

This is an extremely important part of it all.  I'll just leave it at that for awhile, and hope people can see how this would turn your life upside down.

[Patti Feinberg]

Magnus, I'm sorry, I thought the malady was you weren't going to be able to move/speak (hence the couple of PMs I sent you).

So you have severe macular degeneration.

First, I want to make sure, your regular email is embryorm@earthtones.com, right?

Next, what is your real name? (I've already got you in my feinest@windstream.net 'main' email).

My sister in law late in life (the norm is late teens to early 20s), started with retinitus pigmentosa (sp). Her husband is/was a chiropractor, then within the last 15 years got his MD. He doesn't practice medicine, he does alternative healings (I believe diet). Hers completely went away (and she was blind in one eye), unfortunately, now in her mid-50's it's coming back worse.

Like I said, if you're able, email me at feinest@windstream.net WITH YOUR REAL NAME and email anytime you want. Also, since now with most 'smart phones', you can speak the phone# & the message, how's texting for you?

Feel good and sleep good.

Love ya lots,

Patti

[MagnusTrask]

I do not have macular degeneration.  that would have been MUCH easier to talk about,  I would have just been able to say "I have macular degeneration" without any of the struggle to find words.  I do not have anything wrong with my vision.  It's a VERY different sort of serious eye problem, which I've obviously failed completely at describing.  It is undiagnosed after 35 years because no tests reveal any causes that a doctor can see and point to.

It is a change in the behavior of the eye muscles, and a severe over-response of the nervous system to stimuli, especially light.  If my retina were damaged, I imagine I would be LESS sensitive to light.

I save my real name for private communications.  I have good reasons.  I do not have a cell phone.  If I did, since I must not ever focus on print that has not been blown way up, texting would be out.  A couple letters would fill the screen, at the size I need.  That's my correct e-mail.

Thanks very much for wanting to talk, Patti.  It's very hard for me to think so I find it hard to instigate a call.  Incoming calls work better.  I'll try ASAP. 

[MagnusTrask]

I'm getting sicker each day and it's making everything harder each day, even things that seem simple.  The ceiling leak of some horrible red stuff from the roof that I react severely to is giving me hell now.  Body and brain are impacted on heavily.  Every day I must move from here more, and am more unable to do anything to bring it about. 

I'm on Facebook as "Magnus Greel" with an avatar of a pencil-drawn eye, and a reddish cover picture with semi-abstract shapes.  That might be the easiest way to talk.  I'd give my phone # here if I could send PMs here.

[Patti Feinberg]

Hey paisan, I just sent you a Friend Request on Face Face.

Red stuff.....want me to call your local township?

Patti

[MagnusTrask]

If I raise a stink about the leak I could get the landlords mad at me who already are forcing me out this year because they hate Sec 8 tenants.  All I can do is crawl out of bed to computer and back again over and over, barely thinking.  I'm extremely vulnerable.  I'm even finding out my friend here doesn't believe the condition, mostly.  I can't even look for the new place much less move.