Thursday, May 31, 2007

Some Bonuses about Hearing Loss

Sometimes I am happy that I am hearing impaired.

When my kids were babies, they'd cry and cry and nothing would calm them down. I would pace the floors or rock them and hum/sing softly to them (badly off-key, but babies don't care, right?). All that crying would really do me in and I would blissfully turn my hearing aids off. I couldn't hear the crying any more. That calmed me down and my fussing baby would eventually calm down, too.

Now it's the screaming matches my kids have. I really hate it when they fight like that. I asked my mom if we (my siblings and I) were like that. She says that we were. Now it's my turn to go through all these fights. I would step in and try to referee the situation. Screaming doesn't solve anything. Talk it out. I do turn my hearing aids off during some of their fights.

Whenever I hear an annoying noise, I am happy to turn my hearing aids off. The other day a neighbor was using a chainsaw or something while I was trying to eat my lunch on the deck. I was able to eat in blissful silence just by turning my hearing aids off.

So there are a few perks.


Tuesday, May 29, 2007

My Vision

Each person with RP has a different rate and degree of vision at any given time-even between siblings. My brother's vision isn't the same as mine. My oldest sister's vision is better than mine. She still does some limited driving; my brother and I do not.

Sometimes people ask me to describe what I see. It's not that easy. I have described it in a number of previous posts.

I have several websites that simulate vision for various types of vision loss. I disagree with the black ring, because for me, the "blind spot" is not black, but a void. A nothingness. It's not there. I would put my arms out in front of me and slowly pull them back laterally (to the sides).

When my hands move into the gap in my peripheral vision, it disappears. I know my hand is there (muscle sense), but I can't see it. It's gone. If I move my hands back in front of me, it pops back in view. It's like, now I see it: now I don't. (Muscle sense: Old post)

Here is a picture demonstrating what RP vision is like for me, but you'd have to picture that "plastic-looking" ring as a void or invisible space. It has no color. This is the closest I could find.

My night vision is similar to this once my eyes adjust to the darkness. I can just make out something I am looking at, but nothing at all around me.

both pictures from Ohio Lions website

I move on with my life and then all of a sudden, I realize I don't see as well as I did a year or so ago. I have already adjusted to it subconciously without knowing it.

As I have stated in earlier posts, I do a lot of scanning to see. I move my eyes side to side and down a lot. I don't really worry about what's above me because rarely is there anything above me except for a tree branch or a hanging wind chime or something.

Here are other websites to look at:

The Vision and Eyes

Through Our Eyes

Vision Simulator

Vision Impairments

Lighthouse International

See What I See

I had a website that mimicked the lightning flashes that circle in an arc inside my eyes, but it (the website) moved and I cannot find it. It was a pretty good demonstration of the way they circled around and around and suddenly disappeared, only to be replaced by another light flash that would follow the same path. If I find it again, I will be sure to post it here.


Friday, May 18, 2007

How Do You Do?

Last summer, my ex's girlfriend (let's call her Jo) picked up my daughter every other weekend for him (when he had to work late).

I am uncomfortable when I have to meet new people. What kind of impression will I make? What if I don't like her?

She usually waited in the van while my daughter would get her duffle bag and give us a hug good-bye.

One day last August, she was at the door. We talked about what time she would be back home on Sunday night.

I thought she was nice. I wasn't jealous at all. She's tall. I am 5' 9 1/2" tall. (I thought I was 5'10", but I must be shrinking...topic for another day.) She is 6'4". I kid you not.

I felt pretty good about our meeting. A few times before this meeting of sorts, she'd be talking to my husband, because he was outside doing something in the garage. She hadn't officially met me yet, though.

The weekend was over and my daughter was back home. my daughter told me that as soon as Jo backed out of the driveway, she muttered, "Is your mom always like that?"

I could just see her expression as she asked, "Like what?"

Jo explained that she had her hand out so we could shake hands, but I never shook her hand.

My daughter exclaimed, "Mom probably didn't see it!!"

People with RP/Usher Syndrome may seem snobbish or rude.

I can't see anything below my nose. So if I am newly introduced to someone, I may be looking at the face. So I won't be able to see the extended hand. I am not being rude. I just didn't see it.

Sometimes I am lucky and catch a movement or just expect a handshake coming. Sometimes a person who knows I have RP would tell me to shake the person's hand.

"Oh!" Sure I'd feel awful, mortified, or embarrassed, but it's better than appearing rude because I did not shake the other person's extended hand.

Some people have a hard time understanding RPers. How can we be visually impaired? We look like we can see. Every RPer has a different degree of loss at any given time in his or her life. My central vision is good. I have good acuity. I can read the newspaper. I can read blogs. Maybe some day I may need to magnify what I read. I hope that's a long time away yet.

My peripheral vision is lost. I do have a little vision on the far side, but there's a non-existent gap between the far side and the central vision. It's gone. It's not there. It's not a black hole. There's a void. It's like a piece of thick plastic that's impenetrable. I can't see through it. I am "blindsided," so to speak.

So don't be afraid to tell me if I don't shake your hand. Let me know. I'll laugh self-conciously. I may try to explain myself, but I am not trying to be rude.

The next time my daughter had to go to her dad's for the weekend and Jo came to pick her up, I extended my hand and we shook hands.


Wednesday, May 16, 2007

Thousand Hand Guan Yin

Hey, I thought this was pretty cool. These dancers are deaf.

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Tuesday, May 15, 2007

Recovery is Sweet

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I have been sick the past weekend. My youngest was sick on Friday and I must have gotten it from her. I was hoping it wasn't pneumonia or bronchitis. I rarely get chest colds; I get the sinus kind. (This is the second time in three months I got a chest cold. The things a child can bring home from school...does it have to be germs?)

Two days of the nasty stuff (NyQuil) seemed to do the trick. I have been living on orange juice, water, and soup. It was painful to swallow, but for some reason, the orange juice coated my throat and it didn't feel as sore.

This morning, still feeling weak, I manage to do a yoga workout (via DVD) with Denise Austin. She says "open your chest". My chest was a host to germs. I did not have an "Open" sign for the little bugs to attack my lungs.

When I tried to make my youngest more comfortable and lied down on her bed with her, did these germs think, "Oooh, more room to party over here." So she got better and I was the unwilling party hostess.

Opening my chest, filling it with air, and stretching the muscles around my healing chest felt good.

I still feel remainders of the germfest. I am sure I will be back to normal soon.

I manage to sweep the floors. It's amazing how much dirt can pile up in the house in four days. Ugh. Broken chips under the table, likely crumpled into bits and trianglar paper littered around a child's chair like confetti from a snowflake masterpiece-all magically disappears into the garbage. (Sometimes I swear my kids think the house cleans itself.)

I feel myself getting stronger. I clean the bathroom. I vacuum. I change the bedsheets. I open windows to get stale air out (germy air).

Breathing in without a cough...I have to remember not to complain so much when I am healthy.


Saturday, May 12, 2007

Happy Mother's Day

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This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up barf laced with Oscar Mayer wieners and cherry Kool-Aid saying, "It's alright honey, Mommy's here."

Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted.

This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.
For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.

This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes. And for the mothers who lost their baby in that precious 9 months that they will never get to watch grow on earth but one day will be reunited with in Heaven!

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This is for the mothers whose priceless art collections are hanging on their refrigerator doors.

And for all the mothers who froze their buns on metal bleachers at football or soccer games instead of watching from the warmth of their cars, so that when their kids asked, "Did you see me, Mom?" they could say, "Of course, I wouldn't have missed it for the world," and mean it.

This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.

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This is for all the mothers who sat down with their children and explained all about making babies. And for all the (grand) mothers who wanted to, but just couldn't find the words.

This is for all the mothers who go hungry, so their children can eat. For all the mothers who read "Goodnight, Moon" twice a night for a year. And then read it again. "Just one more time."

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This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.

This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.

This is for every mother whose head turns automatically when a little voice calls "Mom?" in a crowd, even though they know their own offspring are at home -- or even away at college.

This is for all the mothers who sent their kids to school with stomach aches assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.

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This is for mothers whose children have gone astray, who can't find the words to reach them.

This is for all the step-mothers who raised another woman's child or children, and gave their time, attention, and love... sometimes totally unappreciated!

For all the mothers who bite their lips until they bleed when their 14-year-olds dye their hair green.

For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.

For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.

This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.

What makes a good Mother anyway? Is it patience? Compassion? Broad hips? The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time? Or is it in her heart? Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time? The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby? The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home? Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?

The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation... And mature mothers learning to let go.

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For working mothers and stay-at-home mothers.

Single mothers and married mothers.

Mothers with money, mothers without.

This is for you all.

For all of us.

Hang in there.

In the end we can only do the best we can.

Tell them every day that we love them.

And pray.

Please pass along to all the Moms in your life.

"Home is what catches you when you fall - and we all fall."

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This was sent to me via email. I thought I would post it here.


Friday, May 11, 2007

Invisible Disability

We were all at the dining table eating supper and somehow the topic of shopping came up.

Flare, my oldest (12 years old), is already showing signs of a sensitive but assertive personality. The kind that tells me she won't back down from a confrontation. (Unlike me, I try to avoid confrontations as much as I can. Yes, I am a wimp.)

We were talking about how people just go in all directions in the aisles. Something catches their eye and they leave their cart and walk across the aisle looking at something that either caught their eye or it was something they were looking for. Even I do that once in a while.

I was helping Angel find a pair of new gym shoes.

A couple wanted to get through and I was blocking them. The woman, talking to my back, said, "Excuse me." I didn't hear her.

The woman rolled her eyes behind my back and exclaimed, "Some people!" I didn't hear that either.

Flare whipped around and defended me. She raised her eyebrows and said, "My mom's hard-of-hearing. Got a problem with that?"

The woman was understandably shocked and embarrassed. She walked away with her husband.

I did not know she did this.

You just never know. If you ask someone to let you through in the store and a person seemingly ignores you, that person just might be hard-of-hearing or deaf. He or she isn't doing this on purpose. It's an invisible disability.

Flare brought up another incident. I had no idea that it happened.

Apparently she told her dad about what happened at the store and he told her about the time when we were living in a duplex (upstairs).

There was a man with three sons (or was it four?) living downstairs.

I worked first shift. I always set my alarm at 4:30 a.m. That way I am up even if I didn't have to work overtime. My body stays conditioned to getting up early that way. (Now I only set it at 5:10 a.m.)

My alarm clock has a vibrator (what were you thinking!?! Get your mind out of the gutter!) that I stick between the mattresses under my pillow. It also causes my lamp to flash on and off, but that doesn't work for me. I am a heavy sleeper. I need the vibrator on. I can feel the noise. It's just that I am more sensitive to vibrations. (I know you are snickering.)

Anyway, after about a month after we moved upstairs, the man living downstairs approached my ex and says, "Your wife's alarm clock wakes up the whole house! Is she deaf or something?"

He responded, "Yes, she is."

It was never discussed again.


Thursday, May 10, 2007

Men Are From Mars and Women Are From Venus

Want to see more differences between men and women? I got this from another blog and had to post it here. It's closed captioned to boot! It's funny. Who knows? Maybe some of you will see yourselves or your significant other in this clip. Enjoy!!


Tuesday, May 08, 2007

Cochlear Implant

I am debating over getting a cochlear implant (CI). Surgery is scary.

I am only considering it. I have asked others with CIs about their experiences. I still want to ask more people. Everyone's experience is different.

I am really not getting much sound into my left ear, even with the new hearing aids. I can hear something when I first put it on in the morning, but not speech. My right ear does all the work.

For now I am going to fill out a questionnaire and a patient information sheet along with copies of my audiogram (with and without hearing aids) and send them to a facility in Milwaukee.

After that, a consultation will be scheduled to determine/evaluate my candidacy for a CI.

There are many things to consider if I am a candidate:

-I will have to make many trips in the first year. Milwaukee is one hour away. Can my husband drive me there all the time? Will he have to miss work? Sometimes you have to wait a long time in the waiting room. That can screw up other plans. So I will be worried about transportation issues. Can I make it to all these appointments?

-Insurance coverage-how much will be covered?

-There's also the decision of which kind of device to use. There are several brands that are used for cochlear implants. Which is best for me?

If there's one thing I don't like, it's making too many decisions.

There are a number of people who are visually impaired who have CIs in both ears (bilateral CIs). This is on the rise, even with those who are deaf. I am not going to worry about that. All I am doing is checking things out.

I don't even know I qualify since my right ear has a moderate to severe loss. I may not be "deaf enough" since I am not almost profoundly deaf in both ears. My visual limitations may be a consideration for getting the CI, though. I don't know.

We'll have to wait and see.

I will keep you posted (if and when) I have that consultation. It might be a while.

The more my vision goes, the more I want to hear.

If they can do this with the ear, then why not with the eye? If they could find a successful way to bypass the inner workings of the eye and get to the optic nerve or whatever part of the brain it is, that would be great.

I can't help but think that whatever "cure" that would be found for RP would be like the CI. You are deaf when you have it turned off. I may still be legally blind with an RP "cure" when it's turned off, too. Or would it destroy any remaining eyesight like the CI would destroy any residual hearing?

This is an old post I wrote about the search for a cure for RP and other degenerative eye disorders.

As always, let's keep on hoping and praying for a cure. Not just for my eyes, but for everyone. Those with cancer or who need emotional, mental, physical, or spiritual healing. I hate to just think about myself. (I'd feel selfish .)

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Monday, May 07, 2007

Hear No Evil

My oldest came home from school one day last week telling me that this is what she heard some of the kids in her class chanting:

Ring around the hooker;
Pocket full of moolah.
Ashes, ashes...
We all get *screwed.

(*Note: I did not want to insert the "f" word here.)

They had recently learned how the original rhyme started. I don't know if this is how the chant started or if it is old and someone is repeating it. (I don't even know if I like this rhyme anymore. Not because of the "modified" version, but because of the origins of the rhyme.)

Sigh. I realize I can't plug her ears or protect her from hearing all this stuff. I know that the older she gets, the more she will be exposed to this kind of language-in high school and college, at work, and from the media (TV, magazines, books, etc.)

I don't remember hearing stuff like this when I was her age. I was probably sheltered from all this, because I didn't "catch" things.

Ignorance is bliss.


Saturday, May 05, 2007

Still Staying Off the Sidewalk

Here is another website on RP and driving. Just wanted to add it. I would have added this to the previous post, but I thought if an interested reader had already read the last post, he/she would miss this.

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Wednesday, May 02, 2007

Extra! Extra! Read All About It!!

This press release offers hope to those who have certain diseases such as Parkinson's, Alzheimer's, spinal cord injuries and retinal disorders (like RP/Usher Syndrome). I am surprised it didn't mention diabetes. Wasn't there something about stem cells helping those with diabetes?

I haven't lost hope for a cure. I do hope there is one in my lifetime.

I am torn with the use of stem cells. Is it ethical? Is it moral? Is it okay as long as it is from adult stem cells?

The article did state that they are working on alternative "therapeutic approaches" so they don't have to use stem cells. That would take care of my dilemma.

I am just going to see where this goes, too.

There's so much talk about the retinal chip and gene therapy, too.

Only time will tell.

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Tuesday, May 01, 2007

Sticky Situation

It never fails. Well, most of the time.

It just seems that every time I just mopped up the kitchen floor, someone accidently spills her drink on the floor.

Call it Murphy's Law. Or rotten luck. How about blaming the mischievious gopher? (Think Caddyshack!)

I wipe up the spill (or the "spillee" does). Out comes the mop to re-wash the floor.

It dries, but it's sticky.


Fresh water. Fresh Pine-Sol. Rinsed out mop. Try it again. Mop up the area.

It's still sticky. More sighs.

Every time this happens, I tell myself that all the kids are drinking is water. That way if it spills, it doesn't get sticky. Milk gets sticky. Soda gets sticky. Kool-Aid gets sticky. Juice gets sticky.

But then it happens again.

Today was one of those days. I knocked over a cup. Down it went. Nice little puddle, rolling slowly towards the living room carpet.

In my house, a spill kind of travels to the east. (The house is not exactly level, but hey, if you were over 100 years old, you'd stoop a little, right?) I don't feel the tilt when I walk across the floor. I don't see it. I just know that it is a little lower on the east side of the house. If anything drops, it rolls towards the living room. A marble. A ball. Even a puddle. It just makes a river seeping slowly towards the carpet.

I've mopped up the floor five times today and it's still sticky. I rinse out the mop. I get fresh water and splash a little more Pine-Sol into the bucket. I even tried it without using the Pine Sol. Somehow, I am just spreading the stickiness.

Usually I can get the stickiness out. I just tried it one more time. If that doesn't work, I guess I am just going to have to re-mop the whole floor again. And again.

What am I doing wrong?

Do I need to get a book on household cleaning tips? Please tell me I am not the only one who deals with this.