And Life Goes On...

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The past two weeks has been a whirlwind of activities besides the CI activation.

The girls had back-to-school orientations and shopping to do. We covered the supplies they needed. I got extra looseleaf/filler paper because they always use that up during the year and it’s nice to have that on hand rather than to run to the store for more (i.e., plan to get a ride or get Hubby to pick some up).

I made plans to get an interpreter for both orientations. Sometimes it’s nice not to have to work so hard to listen. I didn’t have the CI activated yet. I did feel a little funny, but most of the parents and the teachers all knew I was deaf. Angel was uncomfortable with my talking hands and didn’t want me to sign. I had to talk to her about it later (at home). I didn’t want to create a scene. The next night was Flare’s freshmen orientation and Angel did not bother me when I signed, but kept bugging me about how thirsty she was. Drove me nuts. LOL. The girl would make a great salesperson-very PERSISTENT!!

It was my first time in our new church. All the parents had ot gather in the church to hear the principal talk about the rules of the school. The kids never had lockers before so they had a few rules about that (no stickers or tapes) and only CLEAN gym shoes allowed on the new gym floor. The new church was very spacious and high-ceilinged. It was a tad too dark/shadowy for me, but the lighting was better overall (compared to the old church). Maybe it was just because it was in the evening and the sun was starting to set, too. The ceilings are wood-toned while the old church had white ceilings.

I got to meet Angel’s new teacher. She’s a few years out of college. It seems like all the professionals (dentists, doctors, audies, etc) I meet are getting younger and younger. (Makes me feel old. LOL). We scheduled a time for her to meet us at our house. I had a choice of scheduling it at the school or my house, but it was easier for me to just have the teacher meet at my house so I didn’t have to worry about transportation.

Flare’s orientation was confusing. The freshmen had some kind of a mock school day where they went to each class for ten minutes each. The parents had different 10 minute sessions, such as discussions about athletics, academics, and some kind of parent watch thing where any after school party must be monitored and a list of names can be used to call other parents about parties and such (parent network), discipline, and public relations.. I didn’t see Flare until the end. It was kind of frustrating because they split up the freshmen and the parents. Oh well. I would have been lost at sea if I didn’t have the interpreter there. We did have room numbers to find for each session, but I wanted to meet up with Flare again. Flare's homeroom teacher visited our home, too. He chatted with her before the meeting at the orientation started.

The girls are settled in at school now. I’m sure it’s pretty much a routine thing for them. I get them up in the morning (sometimes three times!!) before school. Hubby takes Angel to school and she gets a ride home from one of the parents. Flare rides her bike to school with two other neighbor boys. When it gets colder out, Hubby will take her to school, too.

As far as updates with the CI (cochlear implant), I don’t have new things to report. I don’t notice much with my hearing aid (HA) on, but when I turn it off once in a while, I’ll try to listen for things. I heard the clock ticking. It was muted and high-pitched, but I knew it was the clock. Voices are becoming quite ducky (Daffy Duck). I try to muddle through the “Heliumite” language, I can see the kids’ mouths move, but it isn’t clear sound yet. For now, they make great "heliumoids." It still buzzes and sounds like my hearing aid whistling. I’ve been using P2 more now. P1 seems too soft. The programs that are set on the CI aren’t draining the battery so much. I can put a recharged battery in at 6 in the morning and take it off at 10:30 at night and there’s still juice in it yet. I did try P3. The volume is very subtle and it’s hard to really notice the difference in volume. If I use P4 long enough, I feel a funny “spark” or electric shock (I am not sure how to describe it). It’s uncomfortable.

Yesterday we took a 30-minute trip out of town to pick up half a pig Hubby ordered. It was a nice drive. (It was hot yesterday!!) Since I always used to take this route to work, I couldn’t believe how many wind turbines have been put up in the last four years. It was weird seeing them scattered all over. It was the first time I’ve seen so many of them in one area, but they were unusually immobile. The big thee-bladed propellers didn't move at all.

Then, this morning, Hubby dropped us off at church. It was a little weird for me. It’s new. I am so used to having two rows of pews and now it’s four rows (or is it five?). The pews are arranged in a kind of an arc. Different. If you turn around and look at the top wall, you can see the huge organ pipes. They still haven’t gotten all the stained glass from the old church yet so there are a few clear panes of glass in the windows waiting to be replaced.

It still has a “new” smell in the walls and carpeting.

There are no curbs to the church. I kept looking for one so I can make a step, but it was all ramped-like. That’s good for me because then I don’t have to look for the curb. :)

Have a great Labor weekend, all!!

HUGS.

Oh, before I forget, Flare has been showing me her potential for poetic "flair." She's shown me about four poems that she wrote. Hmm. wonder where she gets that from?.....;)

Updates and CI Moments

All day Monday was really no change from that whistling, motorized whine I got from the CI (Pete).

Tuesday I tried to turn off my hearing aid for a while just to see if I could sort out anything.

CI Moment: I took a sip from my cup and set it down. I heard a mechanical “clunk” as I set it down. And later on, towards the evening, I tried it again. I clapped my hand. I could hear the sound from the clap, but it was not clear. Then I could hear a sort of a difference in the underwater buzzing drill when the kids started talking. I couldn’t hear what they said, but the buzzing whine was different. And I thought I could almost detect some "heliumization" in their voices. (Did I make it to Toon Town yet? LOL)

Last night I plugged in the battery recharger (pictures below). I have two batteries with the starter kit, though I could separately purchase more on my own and maybe insurance might cover cochlear implant items under durable medical equipment. I hope they do. The rechargeable batteries cost just under $200 apiece. (Yes, it’s expensive being deaf.) My recharger can hold four batteries at one time. They last about 10-12 hours. I do have disposable batteries and they can last about three days. But the length of time really depends on how much power my map (the program that the audie sets my CI on) uses. Some maps use more power so it drains the battery faster. Right now my map is set at a low setting, so it shouldn't be draining so fast.

I also set up the Dry and Store (pictures below). This has a special brick inside of it that helps take the moisture out of the CI. The audie said that I could also put my hearing aid in it. I have to take the batteries out, though. It’s really like a dehumidifier for the hearing devices.

Today: I looked at the calendar for some reason and noticed that I had an appointment today. Good thing I looked. I forgot all about it. I guess the CI and the kids’ school routine takes precedence here.

I turned the CI on and felt around for the gravitational pull from my head. (Dare I consider my head like a planet. I wonder if I can cause the tide to come in and out? Just kidding.) Once I heard that familiar motorized noise, I knew the magnet found the internal magnet in my head. Two things I want to say: One, I don’t miss the constant slimy wetness from the earmold from the hearing aid (HA). When the earmold is in the ear all day, it gets damp/sweaty; it is just something we have to deal with when we wear HAs.. I still have that with my other ear, so I guess I’ll have to deal with it. Two, the processor is a lot bigger than my hearing aid and though it feels lighter, by the end of the day I feel the weight and the tips of my ears get sore.

I noticed that if I put my hair up, the magnet holds better. If I have my hair down (I have THICK hair) it doesn’t stay on very well. I have to dig around, moving hair out of the magnetic area. When I lay down, the magnet slips. So this is something I’ll bring up at the next mapping appointment. A magnet that is too strong could irritate the skin, though.

Just now, I find that I have another CI moment. It’s not clear, but I can hear the clacking of the keys as I type. It sounds high-pitched, kind of echo-y. If you have ever heard the TTY (teletypewriter for the deaf), that’s what the sound is similar to, but still distorted. It is still different than what I hear with my hearing aid.

So sounds are starting to sort out. Again, I still get that buzzing motor sound, but it’s getting better. :)

Most of the time, it’s a shrill whistling sound, then I get a lower buzzing sound that changes as a sound is made. I can’t make sense of that sound unless I knew where it came from and what it was. It doesn’t; sound the same as the sound I hear with my HA in the other ear, though.

I forgot to mention this: I did not get a word recognition test when I was getting activated. The audie could just tell that I would not hear anything.


Below I added some pixtures of the items so you can get a visual idea of what I was talking about.

This is the Dry and Store (closed)

This is the Dry and Store (opened, with a Dry Brik inside)

This is the Freedom processor with the cable and coil and magnet.

The internal implant and electrodes are shown here, too, but this just shows how the magnet connects to the coil/cable and processor.

Click diagram above to bigify.

This is the batteries that can be put into the battery holder below.

Battery Holder (Can be used instead of rechargeables)

Snaps into the bottom of the processor. Three batteries are used at a time.

Battery Charger (plug not shown)



Rechargeable batteries

(Snaps into the bottom of the processor or in the slots for the charger)

Have a great day. HUGs.

Sources of pictures: Cochlear Americas and other distributers. If pictures are clicked, the web address should show where they come from.

The First Day We Met

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From the moment we met, I felt this instant attraction to Pete. I was drawn to his magnetic personality. We butted heads almost immediately. We aren’t on the same level yet. He sounds funny right now, but, you know, every relationship takes time...

Meet Pete, my Cochlear Implant. That’s his name. Why? I was thinking about rabbit ears and thought about Peter Cottontail. Why not name the CI Pete?

Maybe some day, Petey will have a brother if I ever get a second implant…and his name will be….Repeat.

This morning was hectic to say the least. The girls had to get ready for their first day of school. I was shook awake by my Sonic Boom alarm clock at 5 a.m. I knew that it was the best time for me to jump into the shower. The girls might take up too much time later.

We still made it on time. In fact, we waited 10 minutes past the appointment time.

The audie asked if I had questions and how the recovery from the surgery went.

The behind the ear (BTE) processor was surprisingly lighter than it looked. I had no idea how the magnet would feel. I hardly felt it.

The first thing she said when the audie looked at her computer was “The internal implant looks good.” I should have asked to see what that looked like.

Soon the audie was clicking buttons (I swear that computer is really a piano. Each key must have a certain sound.) I was asked if they were soft, comfortable, loud, too loud, etc. It was a lot like the tone test (beeps that had varying degrees of pitches).

Then she said she was gong to turn on Pete. (This must be the "live" moment.) I heard this high-pitched noise that sounded like a hearing aid constantly whistling n my ear. (Aww, Petey was whispering sweet nothings in my ear…) Only it was awful. Annoying even. I need to get the brain adjusted to Pete’s voice. Right now it still sounds high-pitched, but more like there’s a fan or air conditioner going (only we aren’t running the fan or air conditioner).

The first thing I said was, “It sounds AWFUL.” I chuckled, only mildly disappointed. I kept my expectations low. I knew everyone’s activation experience is going to be different. I didn’t get any heliumized voices that sound like Minnie Mouse. (And I was planning on titling this post “Operation Alvination” in honor of Alvin the Chipmunk. LOL. Oh, well. It's okay. Then I said, “It almost sounds like a female Darth Vader.” (I think I got a chuckle from Hubby for that comment.)

The audie kept the programs set to a softer sound. All the programs are set on ADRO (which means every day sounds) and each program (P 1 through P 4) are just louder at each level. So when the sounds become softer and I think I can handle it being louder, then I’ll switch. She says it was better than having me get discouraged and not wear it. (I do have a volume control on it, too, so I can turn it up that way.)

I’m going to give the brain time. (And I can wear it with my hearing aid in my other ear.) Thank goodness for that because I wouldn’t recognize any sounds at this point. Karen mentioned a “chain saw” noise and I think I know what she’s talking about. It is a grating noise. That’s all I am getting right now. A constant motor sound. Soon, when the brain adjusts, those motorized sounds should morph into recognizable sounds. (We'll get there, Karen.) :)

Then, INFORMATION OVERLOAD!!...in a different context.

I was shown all my loot, the goodies. All the accessories and components that came with the Cochlear Freedom kit. Two processors. Battery recharger. Batteries. (Both disposable and rechargeable. Dry and Store kit to keep the processor dehumidifed overnight. It’s mind boggling. I want to watch the DVD that came with it. It’s closed captioned, though I am not surprised. After all, it is something a deaf person would be watching, right? I need to familiarize myself with everything.

The whole activation took about one and a half hours.

Again, baby steps. I didn’t expect to understand speech right away. The auditory nerve is waking up again after about 10-15 years. A wrinkle in time...hey, Rip Van Winkle, no that was 20 years...okay, back to our regularly scheduled programing...(my thoughts always trail off like that...had to show a part of my personality here that you would see in person, because I could always edit my thoughts when I write...)

Angel will have some reading assignments for homework to do so I’ll have plenty of listening practice. I'll look into children's books and audio tapes I can follow along. And I will devote some private time with Petey (ooh la la-eyebrows raising up and down) without my HA for additional practice.

Patience is key. I have plenty of that. Tomorrow’s another day….

Thanks to all for your encouragement and support. If it weren’t for all of us sharing our experiences, I don’t even know if I would be where I am right now if I didn’t compare and share our CI journeys. . . thank you. :) HUGS.

BTW, we didn't take pictures or get a video of it. But I will get a pix of all my Freedom components and one of me wearing Petey. :)

Pre-Activation Jitters

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In the back of my mind where I keep a drawer full of anxieties and “what if”s,” I try to stuff some of my fears back into it.

I don’t know what to expect for the re-birth of my ear. Many questions flit through my mind.

Will I hear beeps?

Will it be aggravating?

Will voices sound “heliumized”? Will I feel like I am walking around in Toon Town? Hi, Daffy. Hi, Alvin. Hi, Minnie Mouse.

Will it be intolerable?

Will it work?

How long will it take to adjust to sounds and recognize them?

Am I going to be able to wear my hearing aid (HA) in my other ear or will the audie recommend that I don’t?

Which is best? With the HA in the other ear or without?

Every audie is different, too. Some audies think if you don’t wear the HA or even the first CI in the other ear, the new implantee will force the brain to learn to hear in the reborn ear. Some think that it would blend together somehow.

Only time will answer my questions.

Every CIer who gets turned on, hooked up, booted, or activated has a different or similar experience.

Monday is coming up fast. August 25 at 9:00 a.m. is the day of the Rebirth of my left ear.

I am so-so about it right now. I just won’t dwell on it so much and get myself worked up about the what if's. I have moments of panic, dread, nervousness, and, yes, cautious excitement. I say CAUTIOUS because I want to keep my expectations low. My ear has been deaf for 10-15 years. I can’t expect the brain to adjust to the sounds overnight. It will take time.

Weapons of Mass Confusion

Let’s Talk.

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My ears are weapons of mass confusion.

A little history:

I never spoke a word until I was about 18 months old. I was fitted with lame-o hearing aids, the kind that was like a portable pager with two wires extending out of it to the earmolds. I had to wear a special elastic harness or a vest with a pocket to hold the boxy deck of card-sized processor. I recall pulling them out by accident as I combed my hair because the teeth of the comb would catch the wire. I pretty much watched for that, but it must have taken awhile for me as a toddler to keep my hearing aids on. LOL. I wonder if I drove my mom nuts if I pulled them out or just wanted to brush my hair off my face with my fingers and oops…pop goes the hearing aid.

I think I had about a good five years of auditory training (I believe it was called “speech” in those days. Imagine my confusion when speech class was offered as a class in high school only to find it was for making presentations in front of an audience.) I remember my teacher teaching us how to say words with the vowel sounds, such as “oo” and “ah.” (A lot of oohing and ahhing was done in class.)

I even remember my mother propping me on top of the bathroom counter and making me talk to myself. Okay, not really talking to myself, but just saying words and watching my own lips move as I talked. I don’t think of myself as a good lipreader, but I get by. Say the words “green” and “red” in the mirror and it’ll look the same. I am not good with monosyllabic conversations, either. I’d think, was that a “Yep” or a “Nope”? I can get a lot more out of a sentence by putting pieces of words into a puzzle or just by observing the situation. “We have to get 800 of these packed by lunch.” If a person is pointing at the product and I hear 800 by lunch, I’ll know that that means “work your butt off to get all the products out to shipping by lunch.” Sometimes I just don’t “get it.” When that happens, I’d like the speaker to use a different word or just rephrase the whole thing. Some people just don’t understand how I can be so “off the mark” because I am grasping at straws. I can see how that can be amusing, but it’s frustrating, too. I think I am so much more patient with the elderly if they have trouble hearing, because I’ve been there. I know how it feels not to “get it.” and I know when it’s okay to laugh and when it’s not. It depends on the situation.

My husband has "straight" lips. He's not exactly the easiest person to lipread. His lips barely move as he talks. It is a challenge. I have to rely on what hearing I have to figure it out in context or "get by."

Ever since I could remember, I pronounce certain words wrong. It could be out of habit because that’s how I “hear” it (I have a lot of distortion) or how I mentally read it. We all know how some words aren’t phonetically pronounced as it is written. I don’t even know how I mentally read it. I just read it really fast, I guess.

By the time I was a teenager, if I got corrected because I mispronounced a word, I got defensive. Either I’d refuse to re-pronounce it, say “yeah, that word” to avoid trying to say it the right way, or just try pronouncing it and getting amused looks because of my poor attempts to get it right.

Recent words I mispronounced:

Cataracts (Kate-ar-acts) cat-ar-acts. I don’t hear the word in every day conversation so I still get it mixed up. Doing the cataract post with the cat graphics really helped to keep it in my long-term memory bank.

Blanket (blank-let) I don’t know why I seem to add the second “l” in it. Acck.

Coliseum-I still can’t pronounce it right. (käl′ə sē′əm) Col-lis-see-um? “Col” as in collar or cole-lis-see-um? I know this much: it rhymes with museum. (Again, not a word used in every day converstation.)

Amazon-It’s not a-MAZE-on, but am-mas-ON. Got it.

Sometimes it’s a context thing, such as the word “level” with a “lever.” I look at how the lever is being used and always used to think that it was called a “level.” One day I said something about that “level” and a friend of my sister’s (the one who also has Usher syndrome) said that she does that, too. Score one for me. I wasn’t the only one who thought or misheard the word “level” with “lever.” I never forgot that.

Here's a new one: I was asked if I wanted my daughter to have a pine car for her Girl Pioneer thing. (Girl Pioneer is a lot like Girl Scouts. They learn about nature and do crafts.) They have a Pine Car Derby every year in May. I thought the woman asked me if I wanted a "plain card." A what? Huh? Oh, pine car. LOL.

I can laugh at myself for most of these mistakes, though. Key word here: Most of the time.

Labor Day: August 20, 1994

Warning: Tear-jerker. Keep Kneenex nearby.

Warning Two: Long post

Woman-child



She’s almost fully grown
This woman-child of mine;
The years flew by so fast
For her babyhood days I pine.

Thinking of her
As I gaze at the sky;
Snapshot memories flit
Through my mind’s eye.

She was my little miracle.
Sweet, blonde, and fair.
I long for the fresh smell
Of baby-scented hair.

Her many firsts;
First steps, first day of school…
Her many struggles;
Hernia surgery, recovery…

Teaching and scolding.
Helping her grow…
Learning from mistakes…
Where did the years go?

No longer needs me to
Bandage scraped knees…
She’s a woman-child,
Seeking autonomy.

I still see potential growth.
Learning never ends.
Blossom, my woman-child.
Learning never ends.

So many letting go’s.
I am always near.
Find a purpose, a goal.
I am always here.


July 8, 2007



Poem for my daughter’s 13th birthday-from Shari (Mom)

(It's worth repeating for her 14th birthday, too.)

Labor Day: Saturday, August 20, 1994 at 11:05 a.m.

Flare: 10 weeks old (I was supporting her back and my hand slipped up so that's why the shoulder looks like that.)

I had a pre-natal check-up on Wednesday, three days before Flare was born. This was when all my checkups went from monthly to weekly. It was the last month of my pregnancy.
The doctor said I was dilating two centimeters.

I look at him, exclaiming worriedly, "I am walking around with a hole down there?" (Gimme a break! This was my first pregnancy. You know…fear of the unknown...)

The doctor calmly says in a matter-of-fact tone, "It just means that you are going to have a shorter labor."

I am not going to argue with that. Why should I? I'll take the shorter route. Too much TV. All that shrieking and labor pains I have seen, though I did like the part where they grab the father's hand and squeeze it really hard during contractions...never underestimate the power of a woman..and her revenge.

Still, I say, "But I am gonna walk around like that for another month!!"

He tried to calm me by saying that lots of pregnant women have done this towards the last month. It was pretty common.

I fret about it. I drive home. I take my Golden Retriever/Black Lab mix (though she did have some collie in her, too) out for our daily walk. Krissi loved walking. It was “our” time.

The next day I go to work. My co-worker (who happened to be my future SIL) gave me some baby stuff with money that she collected from the people in the department I worked in. It was sort of a mini-baby shower from my co-workers. I got a baby bath tub and a bunch of baby bath supplies. Since she was at my baby shower the previous Saturday, she knew what I received and what I didn't get from the shower.

But I did not feel right. I look for my supervisor and tell him I wanted to go home. It was Thursday morning. I didn't even start work yet. I just clocked out just before starting time.

I go home. I call the doctor. I get a 10:30 appt. He tells that I am fine. Go home. I feel like a hypochondriac.

I call my mom and Gramma. They come over to see me. They calm me down. I just didn't feel “right.”

The next day I just called in a day of vacation. I felt a lot better. I decided to go shopping. I stock up on diapers and look at baby clothes. I bump into a co-worker who was also pregnant. She was due anytime. I was not due for another month (September 18).

Off and on during the night, I had a funny pain in my back. It was just “there”. I felt some fluttering in my stomach. I learned later that the baby was hiccuping.

My husband (now ex-husband) needed me to take him to work. I complained about my back and how I didn't feel right. He had a delivery he had to make. (He was driving a dump truck at the time.) My "delivery" was another month. It was 3:30 a.m. At this time, my night vision wasn't bad. I could see well enough in the dark. I was 27 years old. I drop him off and he started up the dump truck.

Back at home, I try to get some sleep on the couch. Krissi stayed close to me. I am sure she sensed that mommy wasn't feeling right.

Finally, at 7 a.m., I called my sister-in-law. I asked her what labor pains felt like. I told her I didn't feel right. She comes over. I wasn't in pain. I just didn't feel right. I just had a funny twinge in my back. She called the hospital. The doctor on call asked her some questions. How far apart are the contractions? I shrug my shoulders. I don't know. I didn't time them. It wasn't painful. The doctor said to call back when the contractions were five minutes apart.

All of a sudden I get a twinge again. She timed me. It was five minutes apart. She calls the hospital again. They tell her to bring me in. She tried to call my then husband, but the dispatcher said he would get a hold of him and send him to the hospital.

So, we get to the hospital at 8 a.m. I ask her if she'd be my "coach" since the father wasn't there. She was excited. At 9:00 I was already dilating 5 cm!! Then at 10:00, it was 7.5 cm! Flare came out at 11:05 a.m. on a bright and sunny Saturday morning. I received no drugs for this.

The father didn't get to the hospital till after 12:00!! (Later I found out he stopped by his step-father's to talk and no one knew where he was!! Of course, I was one month early!! Who's expecting me to go into labor that early?)

Family started pouring in to see me. I was kept in the recovery room. It was three o'clock before the nurse came in again to check my blood pressure. She was saying something about the baby. I ask, thinking why I didn't get to hold my baby yet, "Is there something wrong with her?" The nurse gave me a kind of a tight-lipped grimace and said, "The doctor will talk to you." That chilled my heart. Now I was worried. I was freaking out. I was a new mom. Don't they reunite baby and mom after the baby's cleaned up? It's been four hours!!

Then I was moved to a room. The pediatrician on call said that she had some complications. It didn't hit me yet. She was in a ventilator. Her x-rays showed that she had her bowels in her chest cavity. She had congenital diaphragmatic hernia. He noticed that the heart was beating in the wrong area in her chest. This was why he ordered x-rays. It was slowly sinking in to me. Her insides were crowded in her chest cavity. This stuff does not happen. It happens to other people!!

I was in total shock. At 7 p.m., eight hours after she was born, she was flown Flight for Life (medic helicopter) to Children's Hospital in Milwaukee. She was the youngest in the family to ever fly in a helicopter.

She was operated on two days later and stayed there for nine weeks.

August 24-three days post-op. So many tubes sticking into her tiny hands and feet!! They had her sedated so she wouldn't move.

August 27-one week after she was born. It was the first time I held her. I was so worried about pulling out the tubes by accident.

She was breathing on her own almost immediately. She stayed at the hospital for the first nine weeks of her life. (Dismissal day: Oct. 21, 1994.)

Since then, she's had been a very healthy, very normal child.

Happy Birthday, Flare!!

You're a miracle!!




Love,
Mom

Wherefore Art Thou?

My heart broke on that black day, March 4 when Number 4 retired.

Favre? Favre? Wherefore art thou, Favre?

I was so sad. Instead of Alley Sheedy’s character in Short Circuit crying out for “Number 5,” I let it go and moved on. I did not cry out for "Number Four." I belted out a few wails of "waaahhs" and got over it. Or so I thought.

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If he wanted to retire, then let him. He’s had a good career.

Hubby says, “He’ll be back. He’s NOT going to retire.”

Later, we watched him being interviewed by Larry King. He didn’t sign his retirement papers yet. Favre says it’s more for his benefit.

When I was growing up, football was BOR-ING. If my dad and brothers (and oldest sister)wanted to watch the game, then that was it. My older sister and I either had to sit (quietly) and watch the game or find ourselves something else to do. Why watch a bunch of overpaid men who ran around in tight pants? (Although as I got older, it wasn’t so bad seeing men in tight pants for a change. Winks. Yeah, the huddle.)

Soon, the Packers were doing well. Favre was the new quarterback. I started to enjoy football. Only the Packers, though. That was enough. I didn’t care to watch ALL of the games. Only the Green Bay Packers.

Then, as I was accepting the fact that Favre was done, what happens? He wants to come back. My heart skipped. Yay!!

Then my brother says, “Who cares? He should have stayed retired.” Huh? People are NOT happy? (Yes, I was sooo behind. I don’t really watch a lot of TV or read the paper that much.)

With my mouth open, I look at my husband. He shrugs his shoulders at me. Man, I must have looked so NAÏVE!!

In my heart, I loved how Favre rooted for his team. How he just loved football. It showed. It was fun to watch him play because he enjoyed it.

For a while, I kind of went along with the crowd. Oh, boo. (I regret that. Sorry Favre.)

Deep down, I wanted him back. He was Favre, for crying out loud. His name was in my daughter’s history book in fourth grade (five years ago). He’s a Hall of Famer!! He's Favre. "Nuff said.

Lots of high-profile pro players retire and come out of retirement. What’s the big deal? Lots of pro players are indecisive about their future. Do they want to retire? Do they want to play another year? He’s not the only one. Let him play!!

Favre, Favre, Wherefore art thou, Favre?

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Now he is playing for the Jets.

Green Bay Packers and Favre got "divorced." What about us fans...the kids?

Waaahhhh.

I tell my husband that I am done with football.

He wanted to watch the game Saturday. I told him, “Remember, I am done with football. Maybe I’ll be a Jets fan now.”

He shakes his head at me like I am being childish.

I still don’t know what I’ll do.

Retire from football fandom? Be a Favre follower? (Don’t worry, Deaana, I only mean it as a distant fan, not a stalker.) Maybe it’s not so much the Jets team I’ll root for, but just Favre.

Decisions. Decisions. (Just think how hard it was for Favre to decide?)

Legally Deaf 2

My previous post about my "identity crisis" (not knowing how to label myself as HOH-hard or hearing or deaf) prompted me to explore more about when a person can say they are hard-of-hearing or deaf. (It can be a personal preference how they label themselves, too.) I caught it in Wikipedia's Deaf Culture page.

I googled a bit and found some information about a 90 decibel (dB) loss of hearing is considered deaf (profoundly deaf). Some sites even say that "legally deaf" isn't really a term at all.

I even emailed my local audiologist and she confirmed that 90 dB+ is considered technically deaf. She also said that people who have mild hearing loss might call themselves "deaf" and people who are deaf may call themselves "HOH." Again, personal preference.

I found a good website that explained how to read an audiogram. (I did notice some inconsistencies in different websites about the cut off between mild, moderate, severe, and profound losses. When I googled "how to read an audiogram," I got a lot of hits.) As you know, I am not an audiologist, I am just play one on TV. Okay, I'm just sharing information I found.

This is a blank audiogram:

Hearing loss levels:


Normal = >20

Moderate = 40-69 (or 41-70)

Severe = 70-94 (or 71-95)

Profound = 95+ (or 96+)

Some basics about the audiogram:

-It is a graph and measures loudness in dBs.

-The top of the audiogram is "quiet" and the bottom is "loud". -Frequency numbers are the pitch. A small number is a low sound and a big number is a high sound.

-Speech is comprised of many different sounds and can drawn on the lines between 10dB and 60dB (the "speech banana", where certain speech sounds can be heard in quiet (10 dB) or louder (60 dB) areas. Below is an example of a profoundly deaf person's audiogram. This is my audiogram dated January 29, 2008:

The CNT means could not test. I wasn't able to hear any speech at all in the left ear. (You can click the picture below to "bigify.")

The "VT" in the graph is the bone conduction or vibrotactile response. To me, it's more vibration than sound. I used to hear a kind of an echo from the sound tests when the audie would put the headphone behind my ear.)

The X is my left ear (the one the CI was implanted in) and the O is for the right ear. (As for the greater than and less than symbols for the VT responses, one symbol stands for the left and right ear.)

I guess I can say that because I am mostly in the 90 dB+ area, I'm deaf, even though I can hear some sounds.

The graph below shows the sounds that can be heard at certain decibels. Without my hearing aid in my right ear, I would not hear anything in the 0-90 range. I do "feel" the dog bark, but it's not a true sound. Same thing with the phone. I would have to be right next to the phone or the dog in order to "feel" it, though. With my hearing aid on in the right ear, I can hear the dog bark, phone ring, alarm clock, some birds, and music. I may not get everything in my "speech banana" to maintain a conversation without repeats.

Okay, class dismissed. ;)

HUGS

Legally Deaf

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When I was growing up, I used to always say that I am hard-of-hearing (HOH) or just said I didn’t hear that well or had a hearing problem. I didn’t think of myself as “deaf.” I had classmates who were deaf and I knew I could hear better than they could. To me, “deaf” meant not being able to hear a thing. Nada, zip, zilch.

I had a really good friend who was Deaf (capital D-means part of the Deaf Culture). She did ASL and the whole bit. She spoke pretty well, I thought. She did have some hearing and called herself HOH, too, but couldn't talk on the phone that well. We lost touch when she got divorced and moved. We even worked together for a few years until her divorce.

Lately, though not consistently, I just cut to the chase and say, “I’m deaf.” I can’t really hear anything in my implanted ear. And before it was implanted, I didn’t get any use out of it. I heard very few loud sounds if they were low enough, but if you talked into my pre-implanted ear, with or without my hearing aid (HA) in it, I would not hear you.

By the same token, I know that I will still be deaf in my implanted ear when I take the CI off.

With the HA in my better ear, I can hear, but I do not have good hearing with it. I am “deaf” without my HA. I wouldn’t hear you talk into my ear, but with my HA on, I would hear you and maybe get a few words, but I won’t get everything. I even amaze myself if I can get through a conversation without getting a repeat more than three times.

So, out of habit, I seem to go back and forth with “I am deaf” to “I am HOH” or “severely HOH.” I feel like I am lying if I say, “I’m deaf” even though without my HA on in my better ear, I can’t hear.anything but loud noises. It's hard to label myself as "deaf" at times.


I am going to confuse myself once my brain gets trained to hear with the CI. Am I deaf or HOH?

When I talk about my vision loss, I tell people I am legally blind or that I don't see that well or even "I have tunnel vision."

I have less than 20 degrees vision. There's a term for it: Legally blind. Seems simple enough.


So, is there a definition for “legally deaf”? It would be so much easier to explain that instead of trying to explain “severely HOH" in one ear and deaf in the other.

I've Got the Blues

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Okay, I am sure that some of you are curious about the CI brand I chose.

First of all, I want to thank everyone again for their input, knowledge, and experience with the CI brand of his/her choice, even if he/she was given one choice from the ENT. The feedback really helped.

Both AB (Advanced Bionics) and CA (Cochlear Americas from Cochlear Corporation) are very good brands. I had to look at all the pros and cons of each.

Man, I can tell you, it was NOT a very easy decision.

I decided that the FM system (Zoomlink) compatibility was important to me, along with the CI company's repuation and integrity (which both have). I thought about rechargeable vs disposible batteries.

I still hadn't made my decision when I found out that our insurance company denied approval for the CI because they were not "proven safe and effective." It was also, the facilitiy told me later, a matter of the fact that the insurance company didn't think a CI could treat Usher syndrome, even though hearing loss is a part of Usher syndrome. Obviously someone didn't do his or her homework on exactly what Usher syndrome is. Sure, the CI would not help the vision problem, but that was not all Usher syndrome was about. Add to the fact that the insurance company we had turns down CIs repeatedly. Maybe they hoped we'd just give up.

Advised to check Let Them Hear Foundation (LTHF), I went to the website and sent an application. Right away I was asked which CI brand was I choosing. Good question. I had to make a decision. I wanted to wait until I was able to see a sample and compare how they felt and how comfortable they were, but I didn't have that option.

This was when I had to look at my list of pros and cons again. I liked the disposible battery option and the FM system set-up, so I decided to go with the Cochlear Freedom. I was sure either brand would be a good choice.

LTHF said that Cochlear Corporation (CC) withdrew their sponsorship and will not help finance appeals, because they (CC) started their own support system. The only way LTHF would help me is if CIs were an exclusion from the insurance plan. They did, however, do pro bono appeals on a limited basis for CC clients. Otherwise, I would be charged a fee.

Then I checked out OMS Insurance Support, a division of Cochlear Corporation. I went to the Cochlear website and sent an email. I had not heard anything for about a month.

The facility wanted me to write a letter to the insurance company asking them what "literature" they based their denial on. What was the internal rule, guideline, or protocol that was relied opon to make the request for a CI a denial? I never did get an answer.

Meanwhile, I asked a blogger friend who said she could give me an email address of someone she knew that was with the Cochlear Corporation. She responded right away and referred me to someone in my area. Then the ball started rolling. OMS made an appeal on my behalf. I got the approval and then had a minor delay because the facility didn't have a copy yet. I sent them a copy of my approval. The rest of the story, as they say, is history.

I have chosen two colors for the BTE (behind the ear) speech processor: Blue and silver. I could only get one battery so I chose blue as the battery color. I am tired of the boring old beige color. So what if it's skin-toned? I want it to STAND OUT!! I do hope no one mistakes it for a bluetooth. I can't believe some thieves try to snatch it off a person's head.

I have no intention to start brand wars. Both brands, the AB and the CA are very good products and many CIers are happy with their choices. It's like, would you want a Chevy or a Ford? An Oldsmobile or a Buick? Dodge or Toyota? You do your homework and look at the features you want and you make a decision.

Update: I'm healing and doing normal activities. The tip of my ear is still numb, but the area around my incision gets less of that tight feeling. Also, I get a kind of a weighted pain, like there's pressure pushing on the tip of the ear (nothing is there, it just feels that way) and it's a dull pain. The incision doesn't itch, but once in a while I'll feel a pinprickling sensation that is supposed to be a part of the healing process. The numbness is only centered around the magnet area with a radius of about two-three inches all around.

I guess you can say I stopped "milking" it as an "invalid" about a week ago. LOL I do walk slower so I don't bang my head on something.

I guess that's it for now.

HUGS

Blogger's Choice Awards

I have been given a couple of awards and I am now passing them out..,


This award was given to me about two months ago. (Sorry, Kacie.) I didn't mean to let it take so long to mention this. With all the insurance denials, appeals, and approvals, I had a lot on my mind.

There are no rules with this award (my favorite kind). So everyone who reads this post and/or is on my blog roll, is welcome to copy this award and add it to their sidebar if they wish. :) Please, don't hesitate to take it.

Thank you, Kacie. Love you, too.




The second award is called:


Breazy gave me this award.

Here is what she says about me:

This beautiful mother of two has opened my eyes to a genetic disorder that I didn't even know existed. Shari has Usher Syndrome Type II. Her posts are centered around how she deals with life while dealing with hearing loss and loss of sight. I admire Shari for speaking out and teaching others about her disorder, also for sharing her day to day life. Thank you Shari, you have taught me so much about appreciating the "little things" in life.

Aww, shucks, I'm blushing here. But honestly, this is what I meant to do with this blog. Just to share what I can and can't do and how I just "do." I adjust (sometimes) and move on. That's all you can do. I pray every day for a cure and God's guidance. This is a very rare dual sensory disorder and a lot of people have no idea it exists. There are many misconceptions about hearing loss and vision loss. Like for instance, not all 'blind' people who use canes are totally blind. They may have some vision, so don't judge a cane user if you see one at the store reading a magazine at the check-out line or not all blind people have good hearing. I am glad that I am educating my readers. I always worry that some people may see it as a "pity blog" when it's more about how I feel and I am sure many may go through the same grieving process (denial, anger, depression, etc.) if they faced a certain condition. I have up and down days just like anyone else. Hugs to all.

Breazy, I do enjoy reading about about your family on your blog, too. I love "watching" your kids grow up. It is a breath of fresh air. :)

Here are the rules:

Put the logo on your blog.
Put a link to who awarded it to you on your blog also.
You need to nominate 7 other bloggers for the award and put links to them also on your blog.
Finally, leave a comment for those you've nominated- so they know they've received a special award.

This is always the hard part. I wish everyone could get this award. It's really a fun way to show how you appreciate their "blogmanship" and posts they share on their blogs.

Drum roll please...(or hands waving in the air and feet stomping for attention-grabbing vibrations)...my nominees are, in no particular order:

1. Wendi: She's a beautiful mother (of two teenagers) who who woke up one day in April and realized she suddenly lost the remaining hearing in her second ear. As she struggled to adjust to life with silence (and a few tinnitus jingles along the way), she, too, opted to get cochlear implants. And she was BRAVE!! She got BOTH ears implanted on the same day....the day before my surgery. Kudos to Wendi. I cannot imagine total silence unless I turned of my hearing aid in my better ear. She is also a terrific writer. She's very detailed and expressive. I look forward to sharing our experiences as we adjust to hearing with CIs.

2. Beth: She is a beautiful mother of three grown boys. She is also an excellent writer. In fact, she has some of her work published. (I'm impressed.) She loves to read books and posts reviews of books that leave me hanging so I have to bookmark the books so I can read them at a later time. (Sigh, so many books, so little time.) She also has a wonderful sense of humor and it shows in her posts. I never know what to expect when I visit her blog: A review, a humorous incident, or something that will make you jump to conclusions only to see that it is "innocent."

3. Kacie: She is a beautiful mother of three and we share something in common; We both have Usher syndrome Type 2. She started blogging to share her journey with her new guide dog back in January. I was so excited for her. Recently, she has had some issues with her guide dog and had no choice but to retire her dog due to her nervousness in stormy weather and any thundrous noise, such as a motorcycle firing up. She can't guide Kacie in those conditions and it is not safe for either of them when she freaks out like that. A guide dog needs to focus on its job and can't be distracted. My heart goes out to her. I hope that she can be matched with a new guide dog. That means retraining, which involves time away from her family and believe me, that is a hard thing to do when you have little kids at home. Even when a dog is trained to guide a blind/legally blind person, it's not always foolproof. Some dogs become aggressive or timid or something else may come up, but they are rare incidences.

4. Laurie: She is a beautiful mother of four. She has bilateral implants (done one at a time) and is thankful everyday that she is able to hear again with the gift of sound from cochlear implants. I love her quote, "As long as I live, I'll hear waterfalls, birds, and winds sing." by John Muir. I love that. She writes about hearing issues and her family. You can feel the love she has as you read about her family, beliefs, hearing issues, and her dogs. She's a great advocate for people with hearing loss. Kudos. We need more people like her. :)

5. Kila: She is a beautiful mother of three boys. That's quite a handful. She's one of those very organized people that keep up with photo albums and scrapbooks. (Don't you envy her? Winks.) She started out writing journals about her kids and wanted family members to keep up with what was going on by blogging online. She is a mother through and through. She worries about sunburn and any emergencies that may come up. The words she uses to type about her kids just emit love. You just KNOW she loves her kids, even when they are at their worst. She is a fellow Wisconsinite and roots for the Packers, too. Go, Pack, Go!!

6. Abbie: She is a beautiful young woman who, like Wendi, suddenly lost the hearing in her better ear. She woke up from a medical procedure (not hearing-related) to a world of silence. She got implanted in one ear and is having a lot of success with it. She is now persuing the option to implant her other ear. She is a wonderful writer and you never know what to expect. She always keeps me amused. A recent example: She was on a subway and asked a man a question. He had the bluest eyes she's sever seen. She fell instantly in love with him. She was trying to come up with something witty to say, but then he got off the train at the next stop. She watched her future husband leave and fall into the arms of his lover...a man. She exclaims to herself,"That figures!! He's gay!!" She is refreshingly original and unpredictable (i.e., "...looking at me like I have my magnet on too tight" or "...take one look at me in my birthday suit is enough to scare a buzzard off a, ahem, sh*t wagon."). I always look forward to reading her posts from beginning to end.

7. And last, but not least, Becky: She is also a beautiful mother of two boys. She shares tidbits about her kids' antics and I do love the way she writes about how her three-year-old talks, in toddlerese. From "It'th icky" to "I cwy cwocodoile teows." For me, as a person with hearing loss, I struggled big time when my kids were learning to talk. I had to do a lot of pointing and guessing. I managed to teach them the sign for "more," "drink," and "please" when they were a year old. That way I knew if they wanted "more" food or something. Perhaps she is the modern day Erma Bombeck? She's a wonderful writer and loves to "invent" her own words like I do. One example is: Daycation. Just going off, driving a few hours to a place to explore and relax without spending a fortune.

There you have it. The seven nominees. May they enjoy putting this (DUST-FREE!!) award on their e-mantle (sidebar). Let's give them a round of applause (or hands waving in the air), please. As far as I am concerned, everyone deserved this award. We are all unique writers in our own ways.

OXOX

Whassup?

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I am doing better every day. I still am waiting for the de-numbing of my tongue. I find tart items taste better (i.e., lemonade) and I still have that unilateral face-lift tightness around the ear. There were times I had to remind myself that it’s normal after a CI implant. I am starting to have dry skin around the area of the implant. Ugh. I never heard anyone saying anything about that. I am starting to feel like I have dandruff on the implanted side, including the skin around my ear. Ugh. Not a pleasant feeling. I am beginning to wonder what stuff was put on there besides some kind of iodine to prep the area prior to surgery.

I am walking normally, but slower. I don’t want to bang my head into something. My basement has some areas (pipes and vent thingies) that are too low for me and I am constantly stooping to avoid hitting my head. There are some areas where I can stand, but if I'm moving around lugging laundry, I am not going to be taking chances. When we had that flood, Hubby put the freezer on some wooden beams to give it some height off the ground. Some of the wood sticks out and I have to watch for it so I don't trip over it

The implanted side is less swollen. I am trying to find the magnet, but it doesn’t protrude and I can’t find it. I think I know where it is, though, because it’s still numb in the area.

I admit that the first few days post-op, I was like, “What did I do? Why did I put myself through this?” Then I got over the hurdle and started to feel better. I had to focus on the outcome, like a mother dreading childbirth. It’ll be over and now you have a beautiful baby. Only this time, it will be the rebirth of my left ear to sounds it hasn’t heard in a long time. I try not to get my hopes too high and expect too much. At least not right away. I know it takes time and I will focus on that, too.

Activation Day: August 25. This is the day both girls have their first day of school. Unfortunately, we couldn’t get an alternate date that was open at a similar time. So we had to reserve the original date. I am okay with it. I still have some hearing in my better ear, so it’s not like I haven’t heard their voices in a long time.

I did have that high-pitched tinnitus in my ear right after I woke up form surgery. It went away, but it comes and goes now, in different tones and pitches.

A fellow CIer told me that HAs are like a piano, but CIs are a symphony of sounds. I was thinking about that one day when Flare was listening to music. She said that she could hear the violin in the song. I was like, there’s a violinist playing in it? I couldn’t hear it. I usually have this image of a band of musicians, one with a guitar, bass guitar, a keyboard, and drums. I don’t think about all the other extra musical instruments that may be playing in a song. I’m lucky if I can get a few words of a lyric on my own. Just the other day, I was watching TV and this song called Ballroom Blitz (I think?) came on. I thought it was “ballroom dance” until I read the CC on the TV. Oh.

I have been given a couple of awards, so that will be on my next post. Gotta spread the awards around. :)

OXOX