2 days of clouds. A while back.

October 16, 2009 at 4:29 PM | In AWEsome Sights, EYE believe | Leave a Comment
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The day time ones were from around a month or so ago. There was an air show nearby and you could hear them flying around. This was the first time I couldn’t pinpoint them in the sky. My far vision is going away. Some, if they are close enough, I could make out a black blob or a faint blob. I couldn’t make out wing shape or detail of any kind.

However, the sky was gorgeous. The perfect shade of blue sky with big puffy huggable pristine white clouds. The cool breeze was just right with the not-too-hot temperature. It would have been a great day for sailing, or walking on a beach, or watching the sky while the car was getting refueled. I at least was doing the latter.

0830091554The blue in the center of this next photo, I think, is my absolutely favorite shade of blue. Just perfect.

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Another day, probably a couple weeks ago, my husband once again called me to look outside at the rising sun. Here are the pictures from that stormy morning.

This is the view from my bedroom window. Pardon the glaring brightness that is the hospital across the street.

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Then I took one straight up from my window. Great swirling purples!

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Then as the sun came up a bit more and the clouds started thinning. The cloud looked like a great dragon or loch ness monster swimming through the sky.

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Eye update: I’m on a heavy dose of diuretic pill to get the fluid to break up faster and not cause more damage. I get pins and needles in random bits of my body from time to time because of it. Sometimes it will be just the heels of my feet, or just the arches. Sometimes it will be the back of my hand, or my top lip. I have to be careful how I sit on the floor because I’m more apt to put my legs to sleep and have a longer more painful pins and needles time as the blood flows back in. My left eye is not happy at all. I’m constantly looking through vaselined crystalline glass. A larger portion of the world is gone in that eye. I notice that I’m not using that eye as much. My right eye is doing quite a bit of work. My left is just there to give me a bit of depth perception. I was covering up my right eye a few times to see if I could work on my left eye, maybe force it to focus better. I was not a happy camper after that. Nice strain headache and the eye hurt from strain as well.

Something I’ve been curious about, how many people who are of low-vision or blind are actually on disability? I’m not sure I’m far gone enough to claim it and I’m not sure I want it. I would more want it for my husband and any children I might have one day.

I also think I might need to find some sort of counselling or support group that I can go to because I know I’m not getting anything but five minutes of time from my retina specialist per visit. I’m interested in finding people close to my age going through the same thing as I’m sick of the waiting room of said retina doctor. I’m usually the only person there under the age of 50, probably even 60. It’s hard to have hope that way.

Motivation

September 27, 2009 at 7:31 AM | In Mundane in the Brain | Leave a Comment
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How hard is it to get yourself motivated to do anything? To do the things you love, the things you dislike but have to do, or really, anything?

I find it extremely difficult. I love to paint but find it’s such a hassle to set up to do it at my apartment. I love to bead but my desk is covered with random things and I’m not motivated to clean it off. I’m not working therefore I should be able to find 30-60 minutes to just exercise.  I keep walking into the kitchen hoping some fairy has come and cleaned the explosion it has become, but it just doesn’t happen. I have one chore, you’d think I’d be able to do it just fine.

What is more fun is when I actually do find motivation do get everything done one card falling can bring the whole house of cards down. This could happen early in the morning so I’m useless and lazy the rest of the day.  The only things I am able to get done are my French homework and my Japanese homework. I think I’m more motivated by those because I have to answer to someone and I paid money for those courses and should get everything I can get out of the classes.

My brailling is going slow. That was a card that fell the other day. There are 25 lines you can do to a page and I messed up on the 24th line making the whole sheet unusable and I gave up for the day. Not just on brailling, but on pretty much everything. I think I only got my Japanese homework done that day.

Do you find it hard to get motivated? What tricks or what do you tell yourself to get motivated? I’m quite curious how the rest of the world does it.

Inspirational

August 26, 2009 at 10:45 AM | In AWEsome Sights, Change the World, EYE believe | Leave a Comment
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This man is beyond words. Nobuyuki Tsujii 辻井伸行 has been blind from birth but is the most beautiful piano player I’ve ever heard.

Here is his official website: NobuPiano

Here is a beautiful performance from this year where he won the Gold.

Visiting Days are Over.

August 20, 2009 at 11:57 PM | In Braille Wail, EYE believe, Mundane in the Brain, Parlez-vous? | 1 Comment
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Well, That was an exciting three weeks.  It was come to Omaha month. My Sister flew in on a Sunday, my Mom drove in on the next Friday, my sister flew out on the Wednesday after that. My Mother drove out on the Sunday after that. The next day, Monday, my Mother- and Brother-in-laws drove in (from the same town as my Mom so they passed each other as my Mom stayed at a hotel on her way home making it a two day trip.) The in-laws left the Sunday after that.

Whew!

That was a LOT of visiting. It was great, though. I had not seen my sister for over a year. We would love to be closer together but our lives are on different paths for right now. Hers in Florida, mine in Nebraska.

To celebrate our togetherness my sister, Michelle, the bravest of the three, my mother, Gretchen, the one who is crazy about her girls, and myself, the one who has had it done before, all got tattoos. (How’s that for a run-on sentence!)

My sister went first and was very brave through the pain. She has two piercings in each ear and that’s the extent of body modification she has had done. Unless, you count eyebrow waxing. Originally she wanted a celtic design of hearts and metalwork to look like a bracelet around her wrist. It would have been too huge for her line of work to get the detail she wanted without it looking like mush in 10 years. So she went with 5 hearts in shades of purples, pinks and a blue. 5 is her lucky number. The inside of the wrist is a painful place to get tattooed. Especially how close to her hand it was. She pushed through the pain quite amazingly. I don’t think she would have been as brave as she was if she had tried this a few years ago.

My Mom was next, and she was wary with how hard of a time my sister had so she decided on just using color as an outline. A cross to remember and honor her parents who are no longer physically with us. A purple circle for my sister and a blue circle for me, our favorite colors. Red is her favorite color. Mom was pretty brave about it as well, it hurt her as well. Also, it was a crap shoot seeing as she is pretty much allergic to anything thanks to her medication.

Then mine, 8 stars, in a design like my sister’s. I liked the design the artist came up with Michelle’s so I changed it to stars as I prefer them, and in shades of blue. (8 is my lucky number.) We have come to the conclusion that I have tattoo antibodies, because it didn’t hurt me any where near as much as it did for them. It may be because I have 12 ear piercings and 6 other body piercings, and 4 other tiny tattoos that I was used to it. I also pegged it to my eyes. Having injections in ones eyes and other pokes and prodding by machines, puffs of air, and drops makes one a little more used to sitting and not moving a muscle than others.

I felt bad that it didn’t hurt as much as it did for them. I didn’t want them to have a more painful experience. I wanted them to enjoy it. (It also irked them that mine didn’t get as puffy as theirs or that it’s healing faster. Strange, with it being the biggest one of the three.)

Here they are.

DSC01217 This is maybe the day or the day after Mom and I got ours done. Turns out Mom was allergic to the after care products, hence why her skin is more red than ours.

Somehow we also managed to watch 4 seasons of the Office in 3 days. Still funny.

I was sad to see them go. My sis and mom can’t get away much. All three of us are unemployed right now. Different circumstances got us in teh same boat. I hope I can make the journey down to Florida for Christmas this year. Take my husband with me and show him a snowless winter!

My in-laws and I lazed the days and waited for Robert to get home, then we would go somewhere, or just hang out. It was nice to talk with my mother-in-law because we are obsessed over the same two books series right now. Gossiping about all the characters and the shocks and ribaldry.

Now it’s quiet. I have been waiting until these visits happened to do a deep cleaning of the apartment. Kitchen, living room, hallway, extra bedroom, done. Bathroom, front door/dining room/computer room, bedroom, tomorrow.

I found out today that a downpoor means I might as well close my eyes while driving. i can’t see where the road is. Even though I can make out where the other cars are, I can’t see the lines on the road and I panic about being to close to the other cars. The fact it was a half sun-shower didn’t help. Light reflections are always unwelcome.

I just sent in my fourth Braille lesson. I wish it was going at a faster pace. The postal service and life like to eat at time. I would really like to be certified soon, but I know I need the time to let all the info sink in for good. Not just for some test down the road. This is a skill I’d like to keep. I start classes next week. French online and Japanese on location at the school. I’m looking forward to it and scared. I know it’s a well used community college for all ages. I am nervous about being the strange old woman in the corner. I don’t know why I still care after all these years. I will always be strange and different and I am there to learn for my future.

Time to put on my grown-up pants and dig in.

With Chagrin.

July 10, 2009 at 9:37 AM | In EYE believe | Leave a Comment
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I am quite excited that I get to wait a whole 3 months to see the retina specialist again!!

I’ve been there pretty much once a month over the past 4 or 5 months now.

With the maintenance drops the pockets of fluid on the back of my retina are coming back, but not huge honeycombed sections I used to have. They will always occur because there is  currently no way to seal up the leaky blood vessels.

I have noticed my world has been brought in a little more. I am a claustrophobic person so I notice the subtle changes when more of the retina is taken over by pigmentation.

I told the specialist that I was having a hard time focusing again. Turns out not only the pockets of fluid are affecting it. He said to the assistant that I had shagreen of the cornea on my left eye. (I laughed to myself and exchanged an amused glance with my husband because it sounded like he said chagrin. Those who have read the Twilight series by Stephanie Meyer will giggle too due to her overuse of the word.)

I did some research (you have to love Google!) and it came up as Crocodile Shagreen. It is usually in older people, of course. The word ’shagreen’ itself is in reference to a crocodile’s hide. It’s mosaic like structure.  Which is what the cornea looks like. Here is one of the very few pictures I found, click on it to link back to the article.

crshagreenbLook past the white light affected part. See the mosaic-like green pattern?

My specialist said it was due to my Retinitis Pigmentosa, but I haven’t found anything online connecting the two. It just may be because I have a disease in the eyes and they have to work overtime therefore causing my eyes to age faster, leading to the degeneration of my cornea.

Yay.

According to many articles online there is no need for a treatment as it does not effect vision. So that’s good news at least. I think.

Still here

June 30, 2009 at 7:33 PM | In Braille Wail, Mundane in the Brain | Leave a Comment
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Why, hello there. I am still here. I just have nothing exciting going on right now. I  get up at the same time every morning. I sti at the computer and work on organizing and renaming my MP3’s. I shower, get dressed. Do laundry and dishes if needed. Do some work on my braille (I’m done with lesson 5, I just now received lesson 2 back so I can immidietly send out lesson 3.) I then work on a painting until my husband comes home from work. We watch the news, eat dinner, watch a movie, maybe play a game. Read a little, go to bed.

Day in, day out.

I’m excited for fall. We are signing up for classes. I am going to take Japanese again. I will become fluent. That is my goal. The only difference I want native speakers to notice is a possible incorrect accent to the area. I want to be that way with French as well. I might be taking a French course as well. I took them both in college, French I took since junior high. I feel my French slipping hard and my Japanese is no where near where I want it to be. I hope someday to get a job translating. Maybe one day I can not only transcribe braille, but translate it as well.

As for my eyes, they are okay. I have been moved down to a maintenance drop for my pressure. I go back on the 9th to see how it is working.

I am having a little bit more of a hard time while driving, my neck is starting to hurt with how much I have to move my head to compensate for the lack of periferal vision. More cars seem to be coming out of no where. The sunlight still hurts my eyes a lot. I have these great sunglasses that just go over my glasses. Ginormous lenses that cover half my face so no light comes in from the sides, top or bottom. Very nice.

I hope to see my sister and Mom soon. They should be coming to visit at some point, hopefully at two different times, yay for double the visit!

I have been adding stuff to my etsy shop, I hope to add some more here soon. bekochan.etsy.com You can help research into stopping blindness by purchasing. Half of your purchase price will be donated to Foundation Fighting Blindness.

Train of thought via the pity party.

June 7, 2009 at 1:25 PM | In Mundane in the Brain, Preposterous Ponderance | 3 Comments
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Today is not that great of a day for my eyes. I’m feeling more closed in and everything is making me nauseous. Even scrolling a browser page is making my stomach lurch.

I now know I have to put a timer on my phone when I’m out alone without the husband if I am the driver. The other night I had driven over to a friends place while my husband stayed at home waiting for his Mother and brother to arrive in town. I left about 4:30pm and lately the sun doesn’t set until about 9pm. I lost track of time and it was just after 9pm that I headed for home. The sun was mostly down and every car’s lights were on. Not fun. I hate car lights with a passion. They feel like mini suns that continuously stab me in the eyes with beams. It hurts.

A new thing happened this time, I got motion sickness. The only time I ever got motion sickness in the car while growing up was when I was reading. This was not a nice addition to situations that cause motion sickness.

Now on the list is action movies at the theatre (which makes me cry just thinking about it, I love movies!!!), reading in a moving vehicle, sometimes long boat rides, and now driving in low light.

Today seems like a not happy day in that everything is making me sick. The television, reading a book, computer- what the heck am I supposed to do with myself on a rainy day?!?! We were supposed to go to the zoo today but it won’t be as fun in the rain. How am I supposed to enjoy a wonderfully rainy day without a book to read? I have a couple audio books but what should I do with my hands? Knit?  Well, I could do that, but I’m being whiney and don’t wanna.

I don’t know how I’m going to handle not being able to see to do anything. I’m working on a painting. How will I paint when I can’t see it? I will have to go abstract or something? Maybe I can figure out a paint by braille numbers…..

Pity party at my place.

I’m thinking of challenging myself every once in a while. I should blindfold myself for a whole day or more and try to make the most of it. No, not the most of it, the best I can be, with or without sight.

I also need to find or actually search for a program to enable me to be still addicted to the Internet and my computer when I can’t see the screen. Anyone know of a good program?

Henry Doorly Zoo May 20th, 2009 (Lots of Photos)

June 3, 2009 at 8:44 PM | In AWEsome Sights | 4 Comments
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My friend Stephanie had a birthday on the 20th of May so we spent most of the day at the zoo taking tons of photos and enjoying taking our time. We didn’t see everything but we enjoyed the heck out of everything we did see!

I have a members pass so I plan on going a lot. I’ve already been 3 times now!

DSC01006Not sure what kind of monkey he is. I was paying more attention to them rather than the signs.

DSC01008The indoor jungle is amazing! It’s so beautiful!

DSC01015Tapirs!!!! So cute!

DSC01030Once again, I can’t remember the name. They look like the ones you find in Japan.

DSC01036An adorable Pygmy hippo.

DSC01055This guy was hamming it up for a group of kids. If the kids had longer arms they could have touched him he was so close! He did all sorts of poses for the kids and their cameras.

DSC01066On to the Desert Dome and first creatures are the Meerkats.

DSC01074He was so cute, and pretty small. I was lucky for my camera to get that clear of a photo.

DSC01079These guys really know they are being watched. They are all superstars! I’m ready for me close-up!

DSC01091Frog Mouthed Owl.

DSC01104On to the butterfly house. I didn’t take a lot of photos in this fairy land as I was too concerned with being dive-bombed by hugs huge butterflies!

(I have to leave that mistake in as it is funny later in the post. Thanks April!)

DSC01127Now the aquarium. Most of my pictures did not come out clear. You have to love underwater photography.

DSC01132Woohoo! Jellyfish! I could watch these guys undulate all day!

DSC01142He was huge! (HA HA I just accidentally typed hugs instead of huge)

DSC01154I couldn’t quite get the colors right. The UV light was messing with the camera. It was a much more beautiful purple color.

DSC01165Cat Complex. Isn’t he absolutely beautiful?

DSC01168If I knew I wouldn’t get mauled I would love to curl up with this kitty and just lounge with him. Magnificent.

DSC01189Finally, the gorillas.

DSC01178Looking right at me! It was an amazing moment. Then some rude tweenagers came up by us and started banging on the window! we told them to stop, apparently their teacher told them to to get their attention. How terrible! If that gorilla wants through that glass to kill you, he will! So dissapointed with that teacher!!!

Okay that’s all I have for right now. The others are far too blurry for me to post.

Just a quickie

May 26, 2009 at 11:03 PM | In Braille Wail, Preposterous Ponderance | Leave a Comment
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I have not forgotten about this blog. I am being extremely lazy and I’m completely bummed about my braille slate. It took me far too long to notice that it was defective and the return policy only is 30 days. It’s been 2 months. Now I have to shell out more money to get a new one.
I’m still unemployed so I hate spending anything. It might be a purchase with my birthday money from my Mom. The rest will go towards bills.
I have new pictures from the local zoo to upload soon so keep checking back. Thank you for reading!

Progress!x2

May 10, 2009 at 1:21 PM | In Braille Wail, EYE believe | Leave a Comment
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I received an email from my assigned instructor. She is a braille reader herself and I have a million questions to ask her.

She said my first assignment was “excellently prepared”. That made me feel quite happy!

I already have lessons 2 and 3 ready to mail off. I am no where near ready for lesson 4. The chapter is about one cell symbols that are substitution for words and sections of words. I am struggling with the concept when I look at the sentences I am to practice on. It is very difficult. I wonder that if I had any shorthand experience if it would help me at all. I bet it would. Since I do not, I have to take extra care and concern while doing this.

She pointed to a free program for brailling on the computer so I could email an attachment of the finished product. I feel a little wrong using a computer program just yet. I know it’s just a word processor, but if I take the time to tactiley learn it I will get it into my skull better. If I make a mistake I have to do the whole page again therefor I’m doing repetition and that’s the best way for me to learn sometimes.

If anyone is interested the program is called perkyDuck. You can easily find a site through Google. I plan on playing with it. Maybe I will use it for my final manuscript translation. It’s interesting, it’s a 6-key input. Seeing as there is six dots in the braille cell, you have to press the right combination of keys at the same time to put out the letter or phrase you need. It will also be like learning a new language again as I will have to really pay attention to how the letters are forwards!

On another great note I went to the retina specialist again after two weeks on this specific drop and it looks like it is working really well. With RP the blood vessels in my eyes are leaking which lead to pockets of fluid on the back of the retina. They will threaten my vision. I had injections of steroids in each eye to break down the fluid. It worked: temporarily. The drops increase the amount of fluid going out of the eye and decrease how much fluid is going into the eye. The new pictures I took on Thursday showed no fluid build-up. This is 2 months after pictures that showed I had new pockets of fluid. Pretty cool. I think I am still in denial about the progress in my eyes. I am quite skeptical that it will all work out well. There is currently no cure for RP and I’m pretty sure the pigmentation will get me in the end. Well, at least it won’t be because of the fluid.

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