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Naida CIQ90 on top (Ruby Red) and my old Harmony CI processor on bottom -- the Naida is so much smaller and lighter!

Naida CIQ90 on top (Ruby Red) and my old Harmony CI processor on bottom — the Naida is so much smaller and lighter!

Oddly enough, the way the processors bring in sound when I first put them on is the biggest change for me between my old and new CIs. I had my Harmony programming (called a ‘map’) put on my new processors and it works really well, so things sound pretty much the same. I do find that I never need to adjust the volume with these processors; on my old ones, I usually had to fiddle with my right processor (my worse ear, the one that’s been deaf longest and has some high pitched electrodes turned off because they make me dizzy). I asked about getting specific hearing strategies put onto these processors (I have five slots per ear for different programs) and my audiologist told me that everything is pretty much automatic now. They’ve found that people really don’t like to have to switch programs for different environments, although that’s still an option for the future if I decide I want them.

Speaking of my audiologist, I just LOVE her. The whole clinic, actually. I’m going to the Audiology Clinic at Western Michigan University in Kalamazoo, a town I had never been to before my Nov. 30 appointment to have my new processors activated. I thought it was really far away but honestly, the drive is about as long as it took me to get to my Illinois clinic in Hinsdale … and the drive is a lot less stressful. I was always a bit uncomfortable knowing I had no audiologist in Michigan after we moved, and it’s a big relief to have that sorted out and to be working with someone who really listens to my feedback. It’s obvious that quality of life is important to her, and my visits have been helpful and informative. She even gives me encouraging feedback during those dreaded hearing tests, which makes them a bit less onerous.

The activation appointment was really not as big a deal as I expected it to be. I had two huge backpacks full of parts and accessories and the processor parts themselves, and I wasn’t sure what to actually bring. I ended up fitting just about everything (except the extra/backup parts and some accessories like the TVLink) into one backpack and I brought that, just to be safe. It took no time at all to put the programming from my Harmony processors onto the Naidas, and after that we just went over some of the basics (how to change certain parts) and how to pair the ComPilot to my phone and the TVLink.

The Phonak ComPilot almost deserves its own post, but I’m planning to write an entry focusing on music (which ties in to this topic) so I’ll just briefly explain what it is.  The Naida processor is Bluetooth-capable, and the ComPilot is a streamer that you wear around your neck so you can get stereo sound from things like cell phones, MP3 players, tablets, laptops and computers.  No more headphones!  I also use it with the TVLink device – again, it turns my CIs into wireless headphones and puts the TV sound right into my ears; there’s also a small clip-on mic that I can have someone wear so I can hear them better (a presenter/speaker in a seminar, a dining companion in a restaurant, etc). Although I do have to have the ComPilot hanging around my neck, it’s a far cry from the wires I used to have to use to get this kind of sound, and the quality of sound that I get is truly remarkable. It’s my favorite feature of my new CIs, by far!

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When Things Come Into Focus

Every day I have a moment where I go from being deaf to actually hearing sound.  It’s not when I first wake up – my cochlear implant processors are nowhere near my head at that time. Generally I get out of bed, grab a couple of rechargeable batteries off the charger, carefully pick up my CIs (I’ve learned the hard way that the cord connecting the headpiece to the processor is fragile) and carry them with me to the bathroom. Sometimes I put my CIs on right when I get out of bed, but usually I wait until I’ve had time to fix my hair. That involves sliding my hands up under my hair, against my scalp, and shaking to get the curls going and fix any areas that got pressed down or wonky overnight. If I do that when I’m wearing the CIs, I basically would fling them right off my head!

Before I upgraded to the Naida Q90 processors, I had to brace myself for this moment. It’s overwhelming, going from total silence to a rush of sound all at once. My Harmony processors had a program called ClearVoice that would compress any steady background sound and kind of mute it. So if, for example, I had the fan on in the bathroom, my first sound would be the roar of the fan and then ClearVoice would kick in and the sound would get compressed down to a less overwhelming level.  If Dave were to come in and start talking to me at that point, his voice would be the main thing I heard and the fan would fade away to the background – hence the ClearVoice name. It helps you hear when background noise is present.

Even though I’ve had the Naida processors since the end of November, I’m still not used to the difference when I first put them on. I still inwardly cringe and wait to be bombarded with sound for that first few seconds before the compression program takes over. Now, though, what happens is this: I hear nothing for a second or two, and then I hear a beep. After that beep, I can hear. Generally I’m in a quiet environment so there’s not a whole lot going on noise-wise, but there’s always slight sounds happening even in a quiet room. It’s like everything gets clicked into focus, the difference between A and B in a vision exam where A is the blurry lens and B is the one that lets you read that last line on the eye chart.

But the way these processors activate each time I put them on is such a relief. There’s no overwhelming loud sound coming in first and then getting compressed. The first sounds I hear are already compressed. That alone is a huge improvement. But there’s also that beep, which (for me anyway) serves to prepare me for hearing. I focus on that and I know I’ll be hearing in a second. My little warning tone, I love it so.

(Nearly) Ten Years of Deafness

I haven’t posted in forever so I’m sure nobody’s reading this anymore, but for the first time in ages I actually have cochlear implant-related news.  In April 2018 it will be ten years since I went deaf (and ten years since I started this blog, geez).  I can remember getting my cochlear implants and thinking they were all I ever needed – I couldn’t imagine needing to upgrade. But ten years on, and I’m down to one headpiece that functions well, one that is okay for the most part, one that doesn’t work at all and one that cuts out every time I smile, turn my head, etc. (the cord is frayed and loses connection).  I think the only functioning T-mics I have are the ones on my two processors; the backups long since stopped working. And I received a letter from Advanced Bionics this spring telling me that my Harmony processors are now obsolete and no longer covered. When I called last year to get a replacement headpiece, I was told they don’t make that style anymore and I should really upgrade.

“Oh, I’ll wait until we move,” I said. “I want to see how our finances look at that point.” I had no idea how expensive it would be to upgrade, and it made me nervous. A house was more important to me than hearing at that point.

So now we have a house. (Yes! We bought a house in June, in Michigan. I really need to start writing here again.) My headpieces really started acting up, so I contacted Advanced Bionics with my long list of questions.  And I’m shocked to say that less than a month later, I’ve been notified that my insurance approved the upgrade, they are accepting my two backup processors as a trade-in to cover the 20% balance I owed (which leaves a big fat ZERO due) and my new processors are being shipped to me today!

I also had to find a new clinic since I haven’t been mapped since I lived in Illinois, so I’ll be going to Western Michigan University to have these babies activated and mapped. I can’t even tell you all the new features I’ll have – I’m getting the Advanced Bionics Naida Q90 in ruby red – so I have some learnin’ to do.

Advanced Bionics CI Q90

Isn’t she pretty?!

But I’m pretty sure I can listen to music wirelessly with the ComPilot (which I’ll wear around my neck) and Bluetooth technology. I used to have to hook all these wires up to have the music go right into my CIs, so I’m really excited about this!

What a difference (almost) ten years makes.  I’m still reeling.

There Was an Old Lady Who Got a Tattoo

A while back, I casually told Paige that if I were to ever get a tattoo, I’d get some type of spiral.  “Something that symbolizes the cochlea, for my cochlear implant,” I explained.  Then I forgot about it entirely.

She asked about it again last month at Easter dinner, wondering if I was still planning to do it.  “Oh no!” I laughed.  “I’m too old for that kind of thing.  I’ll leave it to you kids.”

And then I kept thinking about it.  I started searching online for possible images, thought about the size and placement.  Originally I wanted it right where my inner wrist begins.  “I don’t know about that,” Dave cautioned.  (He has two tattoos, one on his right arm and, well, basically his entire back.)  “You’re going to see it all the time.”

“But I want to see it!” I argued.  Still, he had a point.  And there’s all those veins right there on your inner wrist; that would be painful, wouldn’t it?  So I decided maybe further down, my forearm rather than my wrist.

I came up with a rough idea of what I wanted, after rejecting a few things.  I knew I wanted it to be mainly black and then to gradually change to a reddish orange inside, to symbolize how my cochlear implant brings color to my world.  I knew I wanted it to be about the size of a quarter or silver dollar.  (Originally I wanted it teeny tiny, but I rejected that fairly quickly.)  And I wanted it to be kind of rough looking, not smooth, perfect lines.

After I settled on what, I started checking out where.  I read a lot of reviews and it didn’t take long to settle on a place called The Parlor Tattooing in St. Joseph, Michigan.  I liked the work that they did, the place looked clean and spoke to me aesthetically, and the reviews were all positive.  Dave called and they said I was welcome to come by for a consultation; because it was small, they might even be able to fit me in the same day.  Otherwise, they were booked out until June.

Oddly enough, I didn’t think too much about whether it would hurt.  I did do a search on the most painful places to get a tattoo, and one site said the wrist would be painful … as in, do that for your second or third tattoo, not your first.  Other people were like, “Eh, no biggie.”

So yesterday, April 14, I realized it had been eight years since I went deaf.  This used to be kind of a sad anniversary for me, but it doesn’t bother me anymore.  I used to feel like I was the only person who’d gone through this horrible situation but now I know that I’m one of many, and we all just do what we gotta do.  I have my CIs and I hear better with them than I did with hearing aids, after all.  Instead of being maudlin, I decided to have a strange man permanently ink my body to commemorate the day.  Why not?!

Now if you’re just a boring non-cool, non-hip person like me, going to a tattoo parlor is a little intimidating.  As we drove there, Dave asked if I was nervous.  “About getting the tattoo?  No.  I’m nervous about making small talk with the tattoo artist.”  Yep; other people worry about whether it will hurt.  I worry about whether I’ll be able to hear over the music and sound of the tattoo … machine? Gun?  And what will I say to this person I probably have nothing in common with?  Or will they even talk to me at all?

shop

We got there about 20 minutes after they opened.  I wasn’t sure I’d actually get a tattoo, but I figured I’d at least find out how much it cost and set up an appointment.  The shop itself is really cool; lots to look at, the kind of color and décor that I usually gravitate to.  There was a very tattooed, pierced, bearded guy standing outside when we walked up, and he nodded and smiled at us.  Then he followed us inside and asked if he could help us.  I explained what I wanted and he said, “You know, I can do it right now if you want.”  No turning back now.
The image I started withI showed him the image on my phone, and then came the scariest moment of the whole experience.  “Oh yea, just email that to me,” he said casually as he handed me a form to fill out.  “Oh fuck,” I thought.  How do I email this thing?  I’m not to the point where I’d try to text using my calculator or anything, but I don’t just casually email random images to people either.  I nodded slowly as my brain frantically ran through the possibilities.  I touched one button on my phone and … yea, that’s not the right one.  I glanced around casually, hiding my panic as I tried to figure out how to do this without looking like an idiot.  Finally I found the right button, clicked on Gmail and looked up at him.  “Oh here, I’ll enter my email address while you fill that out.”  He took the phone and I breathed a sigh of relief.

The transfer

In case you’re wondering (I always did), they make a transfer of the image you want.  They put it on your skin and then use that as a guide when they do the actual tattooing.  “Do you want the edges rough like this?” he asked.  I confirmed that I did, and he agreed that it looked better that way.  Then we talked about the color.  I was under the impression that switching colors was a big deal, so I was only planning on getting two colors.  But he suggested having the color gradually go from dark red to orange, which I loved.

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The whole thing lasted for maybe 40 minutes, and it never became painful.  (The whole visit, from when we walked in until we walked out, took about an hour.)

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And you guys, this kid was so nice and friendly. (If you ever go there for a tattoo, ask for Preston – you won’t be disappointed.)  We chatted the whole time, and even Dave chimed in from the couch he was sitting on.  There were three guys working there and they were all like that – friendly and open.  The whole shop had a very casual, non-judgmental vibe.

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I also noticed that every single client was a woman.  There was a younger girl in her 20s getting her shoulder  or upper arm done, me, and then someone a bit older (but younger than me) getting a tattoo on her ankle.  I thought that was pretty cool – girl power and all.

So it’s done, and I absolutely love it.  I do have to say that it takes some getting used to, because it’s a tattoo that I can see as opposed to something on my shoulder or something, where I’d have to use a mirror to see it.  Yesterday I’d move my arm and think, Oh my god, what is that on my arm?! before I remembered, Oh yea … tattoo.  In the winter I’ll rarely see it unless I push up my sleeve, but it will definitely be on view in the summer months.  Since it’s on the inside of my forearm it’s not quite as noticeable, but it’s very colorful and it’s not small.  The important thing is that it’s exactly what I wanted, and it has a lot of meaning for me.  I smile whenever I see it.  If somebody else doesn’t like it, they can take a hike, man.

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Dave talked to my mom last night and he told her to sit down before he broke the news.  (I figured she’d be upset about it.)  Instead, she said she’s been thinking about getting one on her shoulder.  I think I know just the place to take her the next time she visits.  🙂

Time Flies When You’re Having Fun

I like to do this thing where I think ‘At this time last year, I was …’. It’s kind of amazing to look back and see how much things change in a year or five years or whatever. Dave and I were talking about this today because seven years ago at this very moment, I was in the recovery room at the hospital. This day marks seven years since my bilateral cochlear implant surgery.

Seven years ago, Eric was just about to enter college and Paige was just about to enter high school. How weird is that?

Dave reminded me that August 21, the day after I was activated, was the day we moved Eric into his dorm. I remember that like it was yesterday; I could hear sounds, but everything was weirdly robotic and voices were still very strange-sounding, especially the voices of Eric’s roommate and his family. I remember listening to the rhythmic sound of the car tires on the expressway until the sound made sense to me; same with the sound of the turn signal clicking.

So much has changed in seven years. I didn’t know back then whether the surgery would even work, and I wouldn’t hear sound again for another month. (Activation was a month after surgery, after I was mostly healed.)

My Advanced Bionics Harmony cochlear implant processor and headpiece

My Advanced Bionics Harmony cochlear implant processor and headpiece

The processors I wear (Advanced Bionics Harmony) are old news now, even though they were the latest and greatest when I got them. Since then they’ve introduced the Neptune (an off-the-ear, waterproof processor) and the Naida. I still follow the boards on Hearing Journey and offer support/mentoring to people who are curious about getting a CI, but I really can’t offer hands-on experience with the newest technology … and that’s a strange feeling. I might look into upgrading once we move and I know what our financial situation is going to be, but right now every spare penny gets saved for our future home. My Harmony processors are working fine for now (the rechargeable batteries are getting a little worse for wear though; I might need to buy some new ones).

I haven’t really been writing here that much lately. It’s not like anything bad is happening; summer is here and things are going along just fine. A couple of times I started to write a blog post and then got a sense of déjà vu, like I’ve written about the subject before. A quick search then shows me that yep, I wrote about that exact subject two years ago or whatever. I’ve gone through these periods before and I’m sure it’s just temporary. For now I’ll try to pop in and say hey even when there’s not much to say … and eventually I’ll be writing like crazy again.

So here’s to the next seven years – hopefully by then I’ll look back on this post and think ‘Wow, I was still using Harmony processors back then!’

Re-post: Being Bionic

It’s been about two years since I first posted this, and I thought I’d re-post for those who haven’t seen it before:

I realized the other day that there’s a lot of things about having cochlear implants that I assume everyone just knows. When I first started this blog, I think my main ‘audience’ was other people with cochlear implants or who were considering one. As the years go by that’s no longer the case, and there are certain questions that I frequently get asked, so I figured I’d write a little bit about being bionic.

Just as a quick refresher, for anyone who doesn’t already know, I am profoundly deaf. I lost my hearing three separate times during my life, for reasons nobody has ever been able to figure out. So I didn’t grow up deaf (I wore hearing aids). When I lost my hearing the third time, in April 2008, it left me with no usable hearing – I don’t respond to anything on hearing tests, and there is nothing that I hear, even with hearing aids.

I received a cochlear implant in each ear in July 2008. Instead of thousands of little hairs in my cochlea waving around and helping me to hear, I now have a teeny strip of 16 electrodes that do the job. The sound is interpreted by my brain after it’s routed through an internal micro-computer to the electrodes. The signal is transmitted via the headpiece/antenna connected to a processor (also containing a micro-computer) that I wear on my ear; it looks like a big hearing aid. There’s a magnet inside my head, and there’s one in the headpiece that is attached to my CI processor via a wire. The magnets are of opposite polarity. I put the magnet headpiece up to my head, feel around until I can feel the magnet pull, and let go. It clings to my head via the magnet in my skull. Here’s a couple pictures:

My Left Side CI (purple metallic color) My Left Side CI (purple metallic color) A better view of the processor on the ear. A better view of the processor on the ear.

So that’s what I mean when I talk about “having CIs.”

I didn’t have brain surgery. I won’t get graphic (because I don’t know enough to!) but basically they make an incision behind your ear, along the curve, and then (for me, anyway) up and back a bit. They thread the electrodes into the cochlea and they shave/drill some of the skull to fit the magnet/radio antenna component, which is a couple of inches up and back from the ear. (I think this is slightly different for everyone, based on skull thickness.)

When I attach the magnet, it doesn’t hurt; I don’t feel anything at all. Once it connects, there’s a pause and then a woosh of sound as I begin to hear. (If the magnet is not attached, I don’t hear at all.) Now that I have a program called ClearVoice on my CIs, there’s another change as any loud, steady background noise (fans, etc.) gets suppressed.

If I run my fingers over my scalp, I can feel bumps – very, very slight on the right side and very, very noticeable on the left side. They did shave a bit of hair for the surgery, right behind my ear. Since my hair is long, it covered the shaved areas pretty well. For about 6 months after my surgery, I had my mom (a hair stylist) and my husband use clippers and keep the hair trimmed where the magnet connects. Your head stays swollen for quite a while and the less hair in that area, the better the magnet can connect.

I don’t wear my CIs in the shower and I don’t wear them to bed. I usually take them off if I’m going to nap, because the magnets get knocked off anyway when I lie back. I can get my CIs slightly damp (I don’t freak out too badly in the rain) but they aren’t waterproof like a newer offering from Advanced Bionics, the Neptune.

I find it really difficult to do anything that requires lying back if I have my CIs on. The weight of the processor pulls it off my ear and if the magnets bump into anything, they slide off. This makes going to the doctor and the dentist a bit of a challenge (especially the dentist), and makes things like yoga and sit ups fairly tricky unless I take my CIs off. I have a contraption that helps keep the processor on my ear so I can use that, but after a while it makes my ear ache…plus it’s really hard to put on!

Because I don’t sleep with my CIs on, it’s a catch-22. It’s very easy to sleep because I hear nothing at all, hence nothing wakes me up … but it’s hard to wake up if I have to be up at a certain time. I use an alarm clock that can do a few things: it can connect to a light and flash it to wake me up (this would never, ever wake me up), it has a very loud alarm that can be made higher- or lower-pitched (this would never, ever wake me up), and it connects to a little disc that you can slip under your mattress or pillow, which vibrates/shakes the bed when the alarm goes off. THIS wakes me up. Boy, does it wake me up!!

The cochlear implants didn’t cure my deafness; I will always be deaf. Thanks to my CIs, I have a foot in the hearing world and a foot in the deaf world, which is pretty cool.

My CIs use rechargeable batteries. (This is different by brand – I use Advanced Bionics CIs.) There are two sizes – a smaller SlimCel and the larger Plus, which lasts longer. I started out with the Slims because the Plus size was too heavy for my ear, especially while I was healing. After a while, my left ear was able to handle the Plus size but up until about a month ago, I wore mainly Slims on my right ear. Now I just use a Plus on each ear, and the batteries usually last me the entire day. If I’m staying up really late, I might need to switch them out. With the Slimcel, it was getting to where I had to change batteries at least once, sometimes twice. (I need to get new batteries, since these are now four years old!) I keep two backup batteries in my purse, and I have four on my charging station that are always ready to go.

When my batteries die, there is no warning. With hearing aids, I could usually tell when the battery was about to go…my hearing would get slightly worse. Now, you could take the CI off, slip the battery off and then back on, and see how many lights flash on the processor. (Four lights means it’s fully charged; one means it’s almost depleted.) But as far as just wearing it and having the battery die, it just goes. I mean, one second you hear and the next you don’t. It’s a little weird, but I’m used to it now.

The CIs have enabled me to hear things I didn’t hear with my hearing aids. Before I lost all my hearing, I wore bi-CROS hearing aids because my right ear was completely deaf. So I wore a ‘transmitter’ on that ear, which looked like a regular hearing aid, and it wirelessly transmitted the sound coming in on that side over to the hearing aid I wore on my left ear. Now I actually hear things in each ear, which took some getting used to. I always used to position people on my hearing side, the left. It took a long time to stop placing myself in position to hear (sitting or walking with people to my left, that is). I never used to be able to tell what direction sound was coming from. It took about two years to start to really be able to do this with my cochlear implants, but now I can often discern which ear “heard” the sound. It is very, very cool!! I also hear more high-pitched sounds, things I never knew even made noise…like bubbles popping, for instance. I have still never heard a mosquito or fly buzz. I suspect my hearing loss is such that I just will never hear that.

I do have some electrodes in the higher pitches completely turned off (two or perhaps three). This is different with everybody – we all have different reasons for our hearing loss. When I hear the higher tones, it makes me very, very dizzy. I can’t tolerate it at all. I think this is probably why I have trouble on the phone. Many people with CIs use the phone, but for me it is very difficult. I can understand computer voices (the voicemail menu, for instance) but when a real voice kicks in, I often struggle to comprehend what I’m hearing. I have a phone that captions the conversation on a screen for me. There’s a bit of a delay, and many times the words are captioned incorrectly, but it’s definitely better than nothing! I can handle a very short conversation but I no longer use the phone about 95% of the time. I stick to texting and email. I think missing those higher pitches makes it harder for me in that situation, since that’s what helps us understand voices.

Same with the TV – I do still need captions when I watch TV or movies. It’s hard to explain, but unless I can see a face and read lips, it just sounds like…sound. If it’s very quiet, the person is not speaking quickly and their voice is very clear, I can sometimes follow along. But there’s almost always some kind of other background noise – music, laughter, gunshots, what have you — that get in the way of understanding what I’m hearing.

I’m not disappointed by this, or apologizing for it. I mean, my gosh—I’m deaf, hearing via a little computer I wear on my ear, and I can talk a bit on the phone and hear music, television and movies. So I still need some help with captions – so what? I was going to be happy even if all I heard was environmental sounds…anything other than 24/7 tinnitus and no real sound other than the crazy noises in my head. So I’m extremely pleased, thrilled even, to be watching TV with captions and cautiously, sparingly, using the telephone.

After I had the surgery, I could not hear. I had to wait a month before I wore the external parts (the processor and magnet headpiece) and got them ‘activated’ so I could hear. This is different with every CI clinic; some places do activations a week after surgery, some wait longer than a month. I was glad to wait a month because my ears were definitely too sore to wear the processors before that. I really did need that time to heal. My skull was still swollen even a month later and I had to use really strong magnets to keep the headpieces in place (I’ve since switched out to lighter magnets).

To activate the CIs, the audiologist will hook you up via a cable to his/her computer. (They take the battery off the CI and replace it with the cable.) You listen to beeps and tones and tell them what sounds most comfortable. At first it all sounds weird and robotic; some people just hear beeps instead of actual sound. As days go by, your brain adapts and you begin to hear things in a more normal way. Voices sound strange, like Darth Vader or the chipmunks.

I go back periodically for “mappings,” where I get connected to the computer and the audiologist adjusts the volume and fine-tunes electrode-related things. In the beginning I went every week, then every month, every 6 months, every year…now I just go when I feel I need an adjustment because my hearing seems off. I can get future improvements via the computer programs they put on my processor, without having my internal component replaced.

The surgery usually makes you lose whatever residual hearing you had. This was not an issue for me – I had no hearing to lose – so being deaf during recovery was just more of the same. But you don’t have to be completely deaf to get a CI – you just have to score low enough, wearing a hearing aid, on the hearing test. (How low your score needs to be depends on insurance and/or the clinic.) It used to be that you had to be pretty much deaf to get one, but over the years that threshold has changed and now there are many people who still have hearing and get a CI in order to improve upon that hearing and be able to hear voices again. There are many people who have a CI in one ear and wear a hearing aid in the other. Incidentally, Dave has looked into getting a CI because he is completely deaf in his left ear and wears a hearing aid in the right. He gets his medical coverage through the VA, and right now he tests too well with his hearing aid on to qualify for a CI for his left ear.

Styling my hair can be a little bit of a pain – I have this cord running from my ear back a couple inches on my head to the magnet. I can’t run my fingers through my hair to fluff it up or smooth it out without catching on the wire. I take my CIs off to style my hair, and I have to be careful when I put them on to keep the wire from flattening a big section of hair. (This is a girly thing…I’m sure guys don’t have this problem!)

View from back, wearing both CI's View from back, wearing both CI’s

I don’t try to hide my CIs. I think they’re really amazing and I like to show them off. I very rarely get asked about them. I never notice people looking at them although Dave has said he’s seen people behind me looking at my head (I have colorful covers on the magnets). Only once have I had someone ask me about them; it was in Target, and a lady walked past me and then doubled back. She asked if I had cochlear implants and we began talking; it turned out that her daughter had a CI as well. I also saw one guy with a CI at my daughter’s school her senior year. (She won an award and they had a breakfast for the kids and their families.) Afterward, when people were mingling, I saw him talking to somebody and it was very easy to see his CI. When there was a lull in the conversation, I went over to him and we talked a bit about our CIs. I never did this with people who had hearing aids! 🙂

I just realized how absurdly long this is, so I’ll wrap it up. I know I didn’t cover everything, so if anyone is reading and has a question about what it’s like to have CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).

Safe and Sound

We’ve been watching the news out of Oklahoma with heavy hearts – the images of the destruction caused by the tornado are almost impossible to comprehend.  I can’t help imagining how scared the kids in those elementary schools must have been, and how absolutely terrified their parents must have been as they waited to find out if they were okay.  My heart goes out to everyone who lost property, suffered injuries or worse, who had to endure the storm not knowing whether they would survive.

Here in Illinois, we get some wild weather at times but mostly in the form of thunderstorms.  We’ve never had a tornado in our town; we had that derecho last summer which was scary and knocked out the power for three days, and I remember one instance when Eric was a baby (in the summer of 1990) when there was a bad tornado not that far from here.

We have a lower level with a full bath, so I imagine that’s where we’d go if a storm was in our path.  I worry about the cats, of course, because only one of them is tame enough to catch and put in a carrier; the other three we would have to try to herd down into the lower level with us and then pray for their safety.  But if a tornado blew through our neighborhood in the middle of the night, let’s be serious:  we would stay asleep until it lifted us out of our beds.  Well, Dave might hear it, hopefully in time for us to move to safety.  But we would never hear our town’s tornado siren; we are lucky to hear it when we’re awake and have our hearing instruments on!

I’ve been working toward making things a little more safe for us at night, when I have my cochlear implant processors off (and I’m completely deaf) and Dave has his hearing aid off (and he’s got a severe to profound hearing loss).  Previously, the only alerting device we had in our bedroom was my Sonic Alert alarm clock.  It has a vibrating disc connected to it, which you slip between your mattress and box spring (or under your pillow, if you really want to scare the bejesus out of yourself in the morning).  It will vibrate the bed when the alarm goes off, and it will also alert you to the phone if you have the phone connected as well.  We don’t have a phone in the bedroom (and our phone service is through our cable) so we can’t use it for that.  At least we have a way to wake up on time!

I knew we could do better, though.  There are all kinds of systems out there for the deaf and hard of hearing which will alert you to all manner of things:  doorbell, baby crying, smoke detector, etc.  We have a smoke detector (one of three) right outside our bedroom door, but would it wake us up at night if there was a fire?  Hell no!  Well…again, it might wake Dave up since he has some hearing left.  But it definitely wouldn’t wake me up.  Some fire departments give out smoke detectors with a strobe light for the deaf/hard of hearing.  After exhaustive research, I couldn’t find one in our area and once I realized that the only alerting mechanism was a strobe light, I knew it wouldn’t help me anyway.  It might help if I happened to be awake and looking in the general area of the smoke detector when it went off, but otherwise it would never wake me up.

I started looking into these all-in-one systems and just about fell over from sticker shock.  They range in price from about $190 up to many hundreds of dollars.  I guess they assume that everyone with a hearing loss also has a lot of money!  Yes, we want to be safe but we also have to be able to afford the equipment.

There’s a place in our state (Illinois Assistive Technology Program) that will loan, for free, all kinds of equipment to people with various disabilities, hearing loss included.  However, the loan is only for five weeks and then you have to return it.  It’s a “try before you buy” kind of thing.  It’s awesome if you have a short term need, or are really planning to spend big bucks on something and want to be sure it will be helpful before you spend the money.  But it’s obviously not a long-term solution.

I decided to fall back on my main avenue for items I can’t afford at full price:  eBay.  I searched for three different popular, recommended alerting systems to see if any were available at an affordable price.  I lucked out in my search for the AlertMaster AM6000 unit.   It’s normally sold for $180 and I was able to get it for $19.95 on eBay.  It comes with a wireless doorbell and a bed shaker along with the base unit.  It also functions as an alarm clock.

You can have the system alert you to things like a baby crying, a smoke alarm (or other audible alarm that continues for at least 12 seconds), even a motion detector.  The problem is, all of these things are separate transmitters that cost about $50 each.  You could easily spend more than $400 on the base unit, all of the transmitters and a pager that you can wear in order to be notified all around your home.

Our main concerns were the smoke detector and the doorbell.  I figured the doorbell alert came with the base unit, so all I’d have to do is save for the audio alarm transmitter (for the smoke detector).  After we took a look at the unit, though, I realized I had been imagining that it would somehow alert us to the doorbell we already have.  We can hear the doorbell just fine during the day, but if someone rings the bell at night (and it has happened before) then we have no idea.  This unit, though, gives you a whole new wireless doorbell that transmits to the base unit.  When someone rings that doorbell, it will shake your bed and/or turn a bedside light on and off.  That doesn’t help us during the day – if we replaced our current doorbell with the new one, we’d never hear our doorbell ringing!  Unless we happened to be lying in bed in the middle of the day, we’d never know there was someone at the door.

We puzzled over this for a while, and then I got the bright idea to have the audio alarm situated between our doorbell chime (in the hallway, by the smoke detector) and the smoke detector.  I figured it would alert us to both the sound of our regular doorbell and the sound of the smoke detector.

We set the base unit aside while I went back to eBay, searching for an audio alarm transmitter for a decent price.  Just by luck, I found someone selling a “Doorbell Notifier” that had the same item number as the audio alarm I needed.  I had a suspicion they didn’t really know what they were selling.  But it was only $9.95 with no bids, so I put in a bid and crossed my fingers.  A few days later, I won the auction and the audio alarm arrived quickly in the mail.  I opened it up and yep…it was the exact transmitter we needed!

We started testing it out and it would just NOT notify us when the doorbell rang.  We could see lights flashing on the transmitter so we assumed it wasn’t defective, but we were really puzzled.  Finally we decided to try it with the smoke detector and see if it detected that sound.  Sure enough, our bed started shaking and the light on the base unit flashed.  I took another look at the manual and noticed it said it would alert for any sound that lasted consistently for 12 seconds or more.  It doesn’t sound like much, but 12 seconds is actually a long time for a doorbell – ours rings just for a couple of seconds.  There was no way it would ring long enough to set off this transmitter.

Dave finally suggested that we put the new doorbell out near the original doorbell, with a sign.  I didn’t want to say something like, “Deaf occupants – please use this doorbell at night” because that would be like saying, “Deaf occupants who can’t hear you, so go ahead and rob us blind while we sleep!”  Instead I just made a small sign:  “Please use this doorbell after 10:30 p.m.”  If I saw something like that, I would assume there was a baby or small child inside and it was a quieter doorbell (or something along those lines).  In any case, the chances of this doorbell being used are pretty slim, but at least we have it out there so the police won’t break down our door if they come calling again at 2 a.m.  (Long story – a misunderstanding regarding my daughter Paige, but it was definitely not an experience we want to repeat since they were NOT happy that it took us so long to answer the door.  Our now-deceased dog was the one who finally alerted us.)

I was thinking we did a pretty good job of securing our overnight safety at a reasonable price, but now I’m wondering if we should look into a storm warning system.  On the one hand, we get lots of weather alerts in the middle of the night for thunderstorms and I definitely wouldn’t want to be woken up for those.  On the other hand, if we have a tornado in the area, I would prefer to know before it bears down on us while we sleep.  Looks like I have a bit more research to do!

Pictures – CI Surgery Day

I finally have pictures to share.  They don’t start out graphic but there are photos of my incisions at the end here so if you are squeamish, run quickly!!  😀

This is the morning of surgery, just as we were getting ready to leave the house at about 4:15 am or so.  I am in all my glory with no makeup on and no contact lenses in — I’m wearing my glasses.  (Dave modified these while I was in surgery, so I hold them up to my face now.  I only use glasses first thing in the morning and right before bed — otherwise I have my contacts in):

15 am

Wendi & Dave, July 22 at 4:15 am

This is in the hospital, while I was waiting to be wheeled down to the anesthesia area.  They have the IV in at this point but nothing “good” is going through just yet.  😀

In the hospital, before anesthesia

In the hospital, before anesthesia

I grabbed the camera and got a picture of Dave holding my purse, which is pretty much like asking him to wear a tutu and dance across the room for me.  He usually acts like touching my purse physically burns him…ha ha!  Here he is proudly doing his purse-holding duty for me:

In the pre-op area

In the pre-op area

This is after we got home — the same day I had the surgery.  The head bra was so tight that I looked like I was frowning — I’m trying my best to smile and raise my eyebrows here!  I’m still sleeping on the couch this way, because it’s the easiest way for me to keep my head elevated:

After Surgery on July 22, in the late afternoon

After Surgery on July 22, in the late afternoon

I’m wearing one of Dave’s old shirts in that picture, BTW.  I found that t-shirts were not even an option — the neckhole isn’t big enough.  But polo shirts work well because I can unbutton them enough to make a wide enough opening for my swollen head.  Luckily we have a lot of those, between the two of us!

Okay…warning!  Pictures of the stitches are coming up next.  This is your last chance to bail!!

My left ear (next two pictures).  This is just after we cut off the bandage.  My face was amazingly swollen this morning but I think it’s a little better now.  Anyway, left ear:

Left ear, after surgery

Left ear, after surgery

Left ear, right after we took off the bandage

Left ear, right after we took off the bandage

Now here’s my right ear:

Right ear, a little hard to see in this photo

Right ear, a little hard to see in this photo

And another photo of the right ear:

Right ear, after CI surgery

Right ear, after CI surgery

I look forward to posting pictures when my face isn’t swollen a mile wide — hopefully next week things will be looking a little better.  🙂

I am feeling quite a lot better tonight — my head isn’t quite as heavy and numb.  I am still taking the Vicodin though and don’t plan to stop just yet.  Breaking them in half is working out pretty well.  It’s getting easier to walk around and sit up for periods of time without feeling totally exhausted.  The doctor wants me to take it easy for 2 weeks though, so I don’t plan to jump up and start doing too much just yet.  I’ll be happy if I can get some more computer time in over the weekend!

More tomorrow, I’m sure!!  😀

3 Days Later

The head bra is gone!!  What a relief.  That has really helped with the pain, I have to say.  It was so tight that originally I could barely open my eyes — I had to push it back off my eyebrows a bit.  I looked like I was grimacing and pissed off — it was really comical.  But it was really, really tight and I think that made my head ache more.

Dave cut it off last night but I was afraid to wash my hair just then.  I waited until this morning.  To be honest, it felt good to shower but also kind of scary.  I am still nervous about touching my head and not sure where I should be touching or not.  My hair is clean and no longer crusty (LOL) but it looks like crap.  Actually, I don’t look like myself at all right now.  My face is totally swollen — both sides of my face by the jaw line are completely puffed out.  I still have a little bit of a crease in my forehead from the head bra.  Yikes!!  My hair looks frizzy and limp but that’s because I can’t style it.  I guess it really doesn’t matter what I look like since I don’t plan to leave the house for quite a while yet!

So, three days later.  My head feels very heavy and numb, but rarely am I in pain.  If we had a laptop I would be posting a lot more but it really takes a lot out of me to walk over to the computer and sit here to type, so the long, detailed description of surgery day will be a post for the future.  Right now I come over to the computer a couple times a day to check mail, mostly.

I’m still sleeping on the couch and imagine I will be for a while.  The lower part of my back swells a little bit from having to lay on my back all night long (no sleeping on either side since both ears were done) but it doesn’t hurt — I just feel this swollen lump at the base of my spine.  Weird!  Dave is sleeping out in the living room with me — the first night on the love seat, all curled up (poor guy!) and now on the floor.  What a sweetie.  When he isn’t here, the kids take care of me — Paige is especially doing a great job and she even made me a grilled cheese sandwich yesterday!

Dave said it looks like there’s some kind of “second skin” over my incision area — no stitches or staples.  He said the doctor mentioned the stitches were under the skin.  I have a post-op check on August 8, which I think is about 2 weeks after my surgery date.

I feel lightheaded from the Vicodin but I’m still taking it regularly — I break the pills in half during the day.  I may look really frightening  😀 but I actually don’t feel as bad as I expected to.  I’m not nauseated or dizzy.  I just don’t have a lot of stamina, so I am staying on the couch most of the day.

I’ve learned it’s not worth the calories to eat bread or any kind of bread item (sandwich, etc.)  It has no flavor at all, even if I push it to the back of my tongue.  So I’m sticking with soup, pudding, oatmeal, fruit — we had Italian ice last night and that was tasty.  The front of my tongue is still a dead area, taste wise.  But coffee tastes fantastic — I guess when I drink it, it goes straight to the back of my tongue.  Yum!!

My activation date and mappings were set up yesterday….August 20th is the big day!!  It’s also the day of Paige’s high school registration so we have to see if the school will make an exception for us and let us take her at 10 am.  My mapping is at 1:00 pm so we have to leave at noon; the school has her scheduled to get her books, etc. from noon to 12:30.  If they refuse to budge then I guess my mom will have to take her, but hopefully they’ll work with us.  Anyway, I go back once every week for 6 weeks for my future mappings.  Yay!

It’s hard to believe I’ll feel normal again, as I sit here with my heavy, numb head 😀 but I know things will be so much better in just a week, so I’m giving it time.  In the meantime, have I mentioned how happy I am??  😀  I can’t believe the surgery went so well and so quickly, with such minor side effects.  I absolutely do NOT regret doing both ears at once, you guys.  I admire those of you that have gone back for a second CI because I’m a wimp and wouldn’t want to go through this again…LOL!!  I’m serious — I’m really impressed by you all.  I actually hadn’t really thought of the extra recovery time, etc. when I first mentioned wanting to do both ears at once…and once I started to really think about it, it was too late to turn back.  Now it’s behind me and whew, I’m glad!!

Well, I think I’ll head back to the couch.  One of these days I’ll get to the details, I promise.  I know my posts are usually SO long but I really wanted to remember every little detail when I started this blog, which is why I write those kinds of posts.  I know some day I’ll look back and will have forgotten all those little things.  I never want to forget!  🙂

Thanks for all of your support and good wishes — I can’t tell you how much it means to me!

Moving along, or not, as the case may be

Freeze Frame

As of tomorrow, I’ve had my CI approval letter for one week. So far, I haven’t gotten any new information. It’s starting to get frustrating, but I also haven’t been pursuing it as aggressively as I could so it’s just as much my fault as the doctor’s office.

On Friday, when I got the letter in the mail, it was too late to call the doctor’s office and they are closed on the weekend. I sent an email on Sunday to the audiologist who did my CI evaluation and who had written the letter for my approval request. She emailed me back on Monday of this week, very happy and excited for me, but mentioned she wasn’t in the office that day. She gave me the name of someone to contact in the office. Then she mentioned that she’s due on August 11 (she’s pregnant) and wouldn’t be the one doing my activation and mapping. That was a little disappointing because I really like her, but I’d rather start fresh with someone who will work with me from day one, rather than start with her and then have her go on maternity leave and have to get used to a whole new person for my audiology stuff.

By the time I received her email, it was too late to call the office (not that I would call – I would have Dave do it). Tuesday morning we faxed the approval letter along with a cover letter asking what the next steps are. They never responded, so Wednesday Dave tried to call them. We had a busy day with our candle business but we were done by 4:30, which we thought would be fine because they’re open til 5:00. Well, he got a voicemail message telling him to call back during regular business hours. (?!)

So we tried this morning (Thursday) at 8:30 – they open at 8:00, so we figured there would be no problem getting a hold of them. Nope – same message about regular business hours. I speculated that maybe they don’t answer the phones for the first hour and last hour of the day, as weird as that may be, so Dave tried again at 9:30. He got through but sat on hold most of the time. Finally the receptionist told him that the woman we were supposed to contact is busy and she’ll call us back at 1:00. I would be really surprised if she actually called.

The doctor’s office was CC’d on the approval letter and I actually assumed they would contact me as soon as they received it. Obviously, I was wrong!

Making Life Easier, Part 2

Back in April, after I first lost the rest of my hearing, I applied for a TTY from ITAC and for a few devices on loan from the Illinois Assistive Technology Program. I received the TTY within a week, as well as a visual alerting device that activates a light when the phone rings (I didn’t even realize that was part of the TTY program). We’ve been using the TTY more and more lately, especially Dave since he’s the one who makes most of the phone calls. I just hate the telephone – not only because it’s always been hard for me to understand on the phone, but also because I feel like it puts me on the spot. I get tongue-tied and nervous. I really prefer email, where I can think about what I’m going to say. Dave isn’t bothered by the phone except for the understanding part – he has as much trouble as I ever did with comprehension on the phone. So the TTY has been pretty amazing for him – he loves it!

We’ve only received one call via TTY so far, when my mom called about a month ago. I can tell she really doesn’t like it though and she hasn’t called since – she prefers to just stop by and talk since she lives nearby. She’ll call and talk to Dave or the kids, of course, but if she wants to talk to me, she comes over. Our TTY conversation was awkward, and she kept talking to the operator instead of me. For example, she’d say “Tell her I’m picking Paige up on Saturday” and then the operator would have to tell her to talk to me directly. I know it really, really bothered her to have a third party involved in the call.

I’ve signed up for Web CapTel and I might try calling her that way. I have to do it when Dave is home because apparently they call your phone first, and I can’t hear at all so I can’t answer the phone. I mean, I don’t know if they actually say anything when they call me, or if you just pick up the phone and don’t hear anything on the other line while they connect you. So I’m going to have him pick up the phone, for the first time anyway, and help me in case things go wrong. If it works, though, then I can actually speak to my mom and her part of the conversation will be typed back to me – I think this might make things less awkward for her.

As far as the loan items go, I never received them or heard at all from the IL Assistive Technology Program so that was a bust. I was pretty disappointed because it looked like a great way to try out items that would be potentially expensive purchases. If they were really helpful, then I’d know they were worth the money. Money is just too tight for us to go around buying all these cool devices they have for the deaf. It’s nice to know they exist, but they don’t do me any good when I can’t afford them!

Basically I’m getting by with the help of my family and our dog alerting me. The door alert device is affordable but we haven’t figured out which one would be best – I think you can get the kind that’s hard-wired into your doorbell, or just simple ones that might be battery-activated. That’s not much of an issue for me because I’m rarely home alone and when I am, Toby (our dog) goes crazy when someone’s at the door. I can see him barking and freaking out and know what’s going on.

I’ve been continuing my sign language education and really enjoying it! It goes very, very slowly though because I have to fit it in when I have some free time. The lessons I’m following online (at Lifeprint.com) sometimes show signs differently than the way Dave does them, so after I finish a lesson I go through the signs with him. If he does them differently, he shows me so that we can be consistent with each other (I don’t imagine I’ll ever sign much with anyone other than Dave). I’ve been watching ASL vlogs when I can, if they are captioned, so I can get used to reading signs. Most of the time they go too fast for me but I’m starting to catch signs here and there, which is exciting!

Fingerspelling is getting a lot easier, and it’s really been helpful at times. During Eric’s college orientation I did a lot of fingerspelling to Dave because I can’t tell how loud I’m talking, and I didn’t want to be shouting to him during a presentation. It’s nice to have that silent mode of communication!

After I read Beverly Biderman’s book, “Wired for Sound”, I started to explore Cued Speech. She mentions it at the back of the book in the resources section, and it piqued my curiosity. From the descriptions I read on the websites I visited, it sounded like something that would be faster to learn (compared to ASL) and would be helpful for someone like me, who depends on lipreading, and someone like Dave, who can hear but has a severe hearing loss. We’re still continuing our sign language studies, of course, but we thought it would be good to have lots of communication methods at our disposal. So I set out to find learning materials for Cued Speech.

It’s a lot more difficult to access information online, and there were no classes that I could find. I decided to check our local library – they didn’t have any Cued Speech materials, but they have a great Interlibrary Loan program so I requested the Discovering Cued Speech DVD set. It took about 2 weeks to receive (it looks like it came all the way from Kansas!) but we finally got a call letting us know we could pick it up. It’s fantastic! There’s 2 DVDs, a workbook and a little sheet with the handshapes and locations for quick reference.

We do a review in the morning and then a new lesson at night. It’s been fascinating to see how many sounds look so similar on the lips – even after all these years of lipreading, I never realized that! We’ve only had the set for a couple of days and already I feel comfortable with what I’ve learned. We get to keep it til July 10 and I really think by then we’ll have the hang of it. I’ll get the workbook so we can keep reviewing after we have to return everything. It’s really exciting! I had heard of Cued Speech before and just never took the time to find out what it was. It’s really turning out to be a valuable tool for us, along with sign language.

Eric likes to joke around and say it looks like we’re throwing gang signs. I guess we better be careful using Cued Speech when we’re downtown…who knows what we might advertently “say”! 😯

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