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Old 01-16-2012, 11:23 AM #1
Dejibo's Avatar
Dejibo Dejibo is offline
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Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Default Miss me? a long Dejibo went missing story

Well, its been a long time since I was here. Its been an eventful season. I had several flares back to back and landed myself in the big girl hospital. I was on IVSM and other cocktails for more than a week. UGH! As most of you know I save IVSM for Optic stuff only, and have failed or quit on most DMDs.

I cant see any more. I went blind with the last attack. its like someone smeared thick vaseline on my glasses and then turned down the lights. I can see shapes and shadows, but not much more. My vision is now at somewhere between 20/400 and 20/500 depending on who's test you believe.

I wanted to show up and say thank you for the many emails and private messages asking if I am ok. Some of you have seen the drama unfold on facebook. I finally found a screen reader that will read the computer screen for me and didnt cost me $900 like the JAWS program. I have a set up now that I speak to the computer (like dragon naturally speaking) and it writes on message boards or FaceBook for me.

The meds they gave me had a 50% chance of working in the first ten days, then past that each week saw a 10% drop off in chance of helping me. At 30 days they consider that the stuff is completely ineffective if you dont see a change. Today is day 30.

You wont see me show up many places very often anymore as its hard to navigate in the blind, and I am still learning my new software. The NH association for the blind has swarmed upon my house, and are being really wonderful at teaching me how to live my new life. They are going to send me away to Newton, Massachuesets and teach me how to be independant without sight. Once I prove that I can navigate the city on my own, they are going to send me to dog school and will give me a guide dog. They are allowing me to pick which school I want to go to as each school has different types and styles of dog. I think I will go to New Jersey and pick a lab doggie. Connecticut is closer, but they only have shepards, and they are big doggies. New York has some mixed breeds and I am in love with that idea, but the thought of navigating New York City for my first several outings with a dog scares me to peices! That is at least six months to a year away while I learn to get myself around.

I am learning many things, and figuring out things the hard way, but I am learning. The DH is finally learning to let go, and let me try. He was so freaked out that he wanted me to sit in a chair and just try to listen to TV. He waited out our 30 days like a jail sentence. About a week ago, I declared ENOUGH! im getting up! I had slept for about 3 weeks, and now I have found that I am tired of this. So, watch out world, I am going to stand up and trip all over you.

Hugs and well wishes to all. TY so much for chasing me down outside of this circle and letting me know I was missed. You guys are the best! I will update you every now and again, if I can.
__________________
RRMS 3/26/07
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Betaseron 5/18/07
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Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
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