Wednesday, June 18, 2008

RP Video and Some Good News!!

This is a video from YouTube about a young man's RP (retinitis pigmentosa) journey. It may give you a better look into the "blinding" world. Remember, everyone has a different story to tell and while they are similar, the progression is different, too. There is a demonstration of tunnel vision in this video, but it is not what I see. I have a bigger "tunnel" so I can see more centrally and it's not peripherally foggy for me. It's a void. A nothingness. It's just not there. It has no color, but I can sense movement in the "blind spots."

Sorry, no closed captioning.

Tunnel Vision

Newsbreaking news (okay, not that newsbreakable considering that it's two days old and wasn't that fragile, but it's NEWS!!)

Drum roll, please....

Insurance company finally approved the CI (cochlear implant). Now comes the next pocketbook. ;) How much will it cost me? But look at what I can gain. Better hearing. Better quality of life. I know that CIs won't make me a "hearing" person, but I'm okay with that. I've lived with it all my life. But it's great news, nonetheless.

Onyx was still sick. She was throwing up. I was blaming the new food we switched her to and it was affecting her bladder, too. I was wondering if she was allergic to something. She was listless and slept a lot. Hubby took her to the vet. She had a bladder infection and roundworm. Ugh. Back to the meds. But, now she is more playful again. (Big worryfree smile here.)

A few days ago, I was sitting out on my porch steps just gazing down the street without really looking. It was more that I was lost in thought. Someone was talking to me, touching my shoe (I think it was my shoe. I was at the high end of the porch steps and a person would have to reach over to touch me to get my attention.) I've also have not been getting the best "hearing" quality from my hearing aids. I need to get new tubes for them. That's another blog post, though.) It was one of my sign language interpreters from the college. I was just glad to be able to talk to someone without having to work so hard to communicate, but I got "rusty" with some signs, too. I re-learn them fast, though. :) What can I say? I'm oral and don't have much of an opportunity to sign. I don't hang out with other hard-of-hearing or d/Deaf people that know signs.

Hubby had a wide smile on his face when he joined me on the porch. I was thinking to myself, what's so funny, bub? Are you uncomfortable? But when I asked him about it later, he said that I was in my "glory," signing away.

The day after the flood, Angel realized her bike was gone. Oh, no!! It was stolen!! We stopped by a few neighboring houses to see if she left her bike there. Nope. It was gone, probably during the excitement of the flooding.

The next day, she wanted to play with a neighbor kid and came home with her BIKE!! She left it there, but lost her helmet. It must have floated away during the flood. Whew. But she was unable to ride her bike until she got a new helmet (which she impatiently whined about for two more days till it was replaced.)

Flare and her best friend (who slept over) watched DVDs all night. I sat and watched the last half of Juno with them. I could hear them break out into laughter as I was reading the captions.

I remember two instances where I laughed a few delayed seconds after they did:

Juno, a pregnant teen in high school, stops by her dad's house. He says something like, "my puffed up June bug."

The adoptive mother came in to hold her new baby and catches sight of the grandmother, Juno's stepmom or mother. (I got into the middle of the movie so I didn't know which one was which.)

She asks, "How do I look?"

The grandmother says, "Like a new mom, scared ____less. "

Smiles. OXOX

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At Wed Jun 18, 08:31:00 AM , Blogger Beth said...

Wonderful news about the CI!
And an excellent video - helped me understand more about RP. (And I live about two blocks away from a CNIB...)
My dog is sick too - never considered a bladder infection - just thought it was his old age, a g.i upset, etc. Will be calling the vet.
And Juno was a great movie!

At Thu Jun 19, 12:07:00 AM , Blogger Laurie said...

That is great news about your CI approval! I wouldn't worry about your cost too much if you have insurance. I think my "out of pocket" was between $200-$500 for each ear. . . and it is worth it!

Let us know when you have a surgery date!

Had a great time in Reno. . . hopefully you can come to Nashville next year!

At Thu Jun 19, 09:10:00 AM , Blogger Sue Flaska said...

It's nice to know that the insurance company did the right thing for you! A new CI!! You should be proud of the fight you won!

At Thu Jun 19, 05:19:00 PM , OpenID suddensilence said...

FANTASTIC news about the approval -- that is just wonderful! :-) I'm so happy for you!

I know what you mean about out-of-pocket costs. I have a $5,000 deductible (it's the only way I can afford insurance since I'm self-insured, not thru an employer). My yearly out of pocket maximum is $7,500 so I don't think my portion will be more than that. If you can, check your policy for the yearly out-of-pocket maximum you have to pay -- that might give you some peace of mind.

BTW, the flooding story brought back a funny memory for me. Our neighborhood flooded like that when I was a kid, and my mom forbade me and my little brother from going into the flooded streets. I promised not to, then promptly went to the next street over and went swimming in the road. :-)

Well, the NEWSPAPER took a picture of us and there we were, my brother and I, on the front page of the paper the next morning. Luckily my mom thought it was hilarious that we were busted so badly and didn't punish us. LOL!

Take care,

At Thu Jun 19, 08:13:00 PM , Blogger Shari said...

Beth-Our pets are more like our children and we worry when they are sick, don't we?

Glad you got some understanding of RP. I had to watch that video over and over to get a gist of some things that were said. Oh, well.

Laurie-I'm hoping that my out-of-pocket expenses aren't going to be steep. I will want to know what it is ahead of time.

Nashville isn't too far for you. Grin. I don't know. I did go to the old SHHH convention in '87, I think. It was in Rochester, NY. I didn't know I had RP then. My vision was really good. I was about 20.

Sue-Thanks. My appealer did the work. I just gave her the information she needed. :) Some ins. co's. just don't want to approve things the first time around.

Wendi-LOL on getting caught in the water. The day after the flood, city officials said that they warned people to stay out of the flooded waters because of the contamination (feces, e.coli), but that didn't stop them. I wasn't aware of it. I was wondering if the flood would make it's way down to IL, but it looks like Iowa got it.

Insurance is company self-funded. I believe we have $1500 deductible along with coinsurance.

Will letcha all know when the surgery date is. Haven't heard from the facility yet. Hmmm.

At Mon Jun 23, 11:24:00 AM , Blogger Abbie said...

I told ya I was running a little behind :) You already told me this prior to me getting here to read the blog but I wanted to say YAY!! :)


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