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POSS TRIGGER - Need to get this off my chest
melly2210 posted:
I have been going through the ringer since Feb 22 with my vision. It's been one doctor after another and another and another. Test after test after test. Last few dr's seen was a regular opthalmologist who referred me to a neurologist because he "couldn't do anything for me." and it was a "nerve related issue." It's even on the medical notes. Neuro runs a MRV, MRA in addition to the MRI (none contrasted) I received in the hospital on 2/22. He runs even more blood work. And then orders a spinal tap. He tells me he can't help me any further and I am out of his level of expertise. Tells me I need to see an infectious disease dr because I might have Lyme Disease (thus the spinal tap which of course was "perfectly normal). Refers me to a neuro-opthalmologist.

And then I couldn't get the referral to see the N-O. It had to come from the originating opthal. I can't see even close to normally out of my right eye and the med notes from the Opth. even gave severe abnormal results. HMO insurance. PCP couldn't get the referral because it had to come from originating Opth. It went round and round for a week. Finally, I got hubs to take me down to Lighthouse for the Blind. In the lobby they're explaining to me that I need to apply through the state's Division of Blind Services for them to help me for free. It is here that I am informed I was legally blind in my right eye. No dr informing me, but an registration person from a non-medical company. Go to DBS, and they can't help because I wasn't blind in both eyes. Go to ins co since their corp office is in Tampa. To get the referral to the neuro opt, they threatened the reg opth to remove his capitalization meaning he'd be paying the NO direct for my appt if they pushed this through.

See NO FINALLY. He does a very extensive exam. Left, good eye went from 20/40 vision to 20/300 in a month. Notes state blatently that Opth did not do tests needed. He refers me back to opth and neuro both of whom already told me they can't help me. Go back to DBS, reapply...voila...approved. Case manager arrives @ my home 2 days later for intake. I get mobility training, ind living classes, tools for the blind...for free. They inform me that I also need to chge my primary disability thru SS to Blind as I get more $ that way. Of course SS over phone says no way.

See the opth today who runs a field of vision test. Neuro opt already dx that I have no peripheral vision in either eye. End of appt, do I need to f/u? NOOOOOOO....I have to go back to the neuro. He's supposed to do a VEP test where I stare at a patterned screen while they do an EEG. He MIGHT do the recommended CONTRASTED MRI as ...drum roll please...I might have had a stroke behind my eye that wouldn't have shown up in a standard MRI.

On top of all of this, hubs and my boys are baring the brunt of the physical changes happening from rearranging the house to literally removing furniture to helping me cook and navigate. No driving. And we won't toss the emotional side of it in for me. You'd think SOMEONE would call or come by family-wise, right? I mean they all live within 20 miles of us and 3 live within a 2 sq mile radius. NOPE. Not a soul has asked if we needed anything. Not a person has come by while I am housebound to visit. Not a person has called to offer a chance for me to get out and TRY to do something normal. NADA. NOTHING. What happened to empathy and compassion? What happened to caring about family? Fine if they don't give a sh!t about me, but what about hubs and the kids?

I am so stressed out over the changes and the neverending cycle of dr after dr. They all stress they need to know the cause. Yeah right. The prognosis seems clear as day - BLINDNESS. I really don't care about the cause anymore....I am so depressed and anxious I am barely functioning. DS1 (16 yrs) is asking me daily if I am ready for the crisis center yet. How F'd is that?

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
DizzyJgirl responded:
Melly...I wish this were all different for you. I do think it is good for you to vent when you need to.

It is sad about the people not coming to see you. It is no excuse, people get busy (and selfish to be honest). I am glad y ou have your dh and boys there. They sound like they are doing a lot to help you. I think in these situations, it makes people feel good when they can do something to help.

Take care...thinking of you.
Live Life Loud
melly2210 replied to DizzyJgirl's response:
Thanks. Just trying to hang in there. I get more visits from my Case Manager through Blind Services than I do anyone else. UGH

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
bpcookie responded:
Wow, Melly honey bunny, All Hell is breaking loose huh? I hope to Hell that someone can fix this problem and that it does not come to blindness. The stress and depression is very understandable. Try doing something special and nice for yourself, like eat some junk food, ice cream, pie, cake, thats something that I do when Im depressed. Also, turn on the radio honey, music may sooth your soul.

love ya, hugs
Please join my community called GRUMPY GROUPIES ( ) Fun and serious topics, nothing is taboo. So get on over there. Weirdo's are welcomed.
jselleck replied to bpcookie's response:
Hey Melly, did you get the post I made on Facebook a few days ago"??? If not, here it is: I was flipping channels and came across a minor league baseball game played in our area. Was halfway paying attention, when the announcer says that one of the players had a problem simmilar to yours. He started to go blind in his left eye, they did all kinds of tests, then it turns out that the tear duct wasn't working properly and I think they might have done surgery. May be something to bring up??? Hope things get better fast. Would be right by ya if I could be.

melly2210 replied to jselleck's response:
Jess....I did see that. They ruled that out long ago, unfortunately. I wish it was something that simple. I know you'd both be here if you could, and I so appreciate that.

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
melly2210 replied to bpcookie's response:
I am doing something nice for myself...or try least once a day. Sometimes it is a special treat, or a nap, or a hot bath. I missed being able to read, so Blind Services sent me a library where they have books on tape (yeah...tape) or you can download them through your computer through some special software. Not the same though. Miss being able to do the art in detail that I once did.

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson

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