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Teamwork

I went to a new dentist last week, for my regular cleaning and updated x-rays.  I’ve never been fond of the dentist to begin with, but since I got CIs it is extra challenging because being reclined makes my CI processors (aka my “ears”) fall off.

I’ve tried many things over the years — wig tape, headbands, scarves, even a knit cap.  Nothing is foolproof (although the knit cap worked the best, since it also helps to keep my magnets where they need to be).  However, I am not about to pull out a knit cap in August.

This time around I used something called a Snuggie from Advanced Bionics, basically tubing made to fit my Harmony processors that fits snugly around my ear.  It works perfectly to keep the processor from being pulled off my ear as my head is reclined back.  The only issue that remained was keeping the magnets from being knocked out of place by the headrest.

Advanced Bionics Snuggie for the Harmony cochlear implant -- the clear tubing goes around the ear

Advanced Bionics Snuggie for the Harmony cochlear implant — the clear tubing goes around the ear

I played around with a scarf tied strategically over both magnets, but eventually decided it was too fussy.  I figured I’d just deal with the magnet situation if and when it arose.

In the end I didn’t have too much trouble; they were able to adjust the headrest so that my magnets stayed in place during most of my visit.  They did slip off when I was told to turn my head to the side, but those instances were brief and my other magnet stayed in place so I had enough hearing to still follow instructions.

What really impressed me, though, was when the dentist came in for the exam portion.  She had a bit of an accent, and originally asked me a question when her back was turned (she also had a mask over her mouth, just for an added challenge).  I had no idea if she was talking to the dental hygienist or me, so I stayed silent.  She turned back to me, and I met her eyes and said, “I can hear you, but I also read lips to understand what you’re saying.”

Her face lit up and she pulled the mask down.  “Thank you for telling me! That’s very good to know.”  Then she turned to the hygienist and asked her to repeat everything for me — although the dentist kept her mask on, everything she said was repeated by the hygienist so I could read the hygienist’s lips.  I’ve never had anyone in the medical profession do that for me before and it made a huge difference.

Not only did I get a clean bill of dental health, I came away feeling like my needs were met with respect, kindness and ingenuity.  It almost makes me not dread going to the dentist again!

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).

Three Things I Like; One Thing I Don’t

Although I’m calling this post “Three Things I Like; One Thing I Don’t”, I have realized there is one more thing I like … I mean, really like, and that is autumn. It’s here in full swing now and I find myself staring out the window and grinning, while I contemplate all the recipes I can make now without turning our kitchen into a sauna. YAY AUTUMN.

And also, I’m not getting paid to write any of this or getting any perks or anything. These are just some things I’ve been very happy with lately and I wanted to talk about them. And also one thing I wanted to complain about, which is something I try not to do very often, but this really deserves some complaining in my opinion.

Thing I Like #1 is on my mind because we just had it for breakfast, so I’ll start there. It’s this biscuit recipe I got from King Arthur Flour. When I started counting calories last year (can’t believe it’s been a year already), I was appalled at how many calories there are in one homemade biscuit. It’s just so little, you know? How can it be around 150 calories?! So we’d make biscuits and gravy (turkey breakfast sausage, 2% milk) and I’d watch sadly as Dave crumbled four biscuits onto his plate while I tried to stick with one and half, maybe two if they were the smallest ones.

This biscuit recipe just uses two ingredients: cream and self-rising flour. The biscuits are one ounce each, and you use equal amounts of flour and cream so it’s easy to adapt. If you want 12 biscuits (you lucky thing, you) then you use six ounces of flour, six ounces of cream. We made eight this morning (two for me, four for Dave, two left over) so it was four ounces flour, four ounces cream. We use water to wet them. They are delicious and only 70 calories each! They make me happy.

Thing #2 is a girly thing (just a warning for the fellas). I think it’s very cliché to assume that menopause begins at 50, and yet that is just what my body seems to have decided. Right around my 50th birthday, my monthly visitor stopped arriving and I had an annoying new friend, Hot Flash, who rang my doorbell every 15 minutes or so and just would not leave. At first it was kind of funny, and I’d announce it to Dave. “Whew!” I’d pant, reaching for my fan (seriously, a little cloth fan, like what Christina Aguilera always used on The Voice, was my lifesaver), “I’ve got another hot flash! Feel my forehead!” I could see the look of pity on his face every time I turned on the fan/changed into a tank top/mopped my brow.

One day I looked up hot flashes online and saw that they could last for, like, five years or more. I was really and truly getting 5-6 hot flashes every hour, and sweating through my nightgown at night, and it was started to become very much not funny. So I started looking for anything that might minimize them.

I had run out of my Costco multivitamins, and since we aren’t Costco members anymore I was looking for a new brand to replace them. Then I thought, hmmm, maybe there’s a menopause multivitamin? Kill two birds with one stone and all that? And yes, there was. And ladies, it WORKS. For me, anyway. I am completely amazed to be saying this, but I might get one hot flash a day now; sometimes I don’t have any. I started noticing a decrease after about a week, week and a half on the vitamin so it must be a cumulative effect. It’s not some weird voodoo stuff either, it’s just One-A-Day Menopause multivitamins. I take mine at lunch to help minimize the chance of any nighttime hot flashes. Good, good stuff.

Finally, I noticed I was getting dry eyes (also, probably, because of menopause). First I had a bit of a cold and my left eye was all gunky and gross one morning. I thought it would clear up in a week or so, and the morning gunk did just last one day. But it persisted, this feeling of grit in my eye later at night (it was fine in the morning) and my eye would water a lot overnight. After over a month of this, I decided to do a search for a contact lens solution that was better for dry eyes, and I came across Clear Care. It’s more of a deep cleaner, like the enzymatic cleanings I used to have to do years ago. You have to use the special case it comes with, leave the contacts in for at least six hours to neutralize the hydrogen peroxide solution, and never, ever use Clear Care in your eyes. But just two days with this stuff and my eye is back to normal. Amazing!

I fill the case with Clear Care, put the Clear Care bottle away, and then leave a bottle of plain saline solution (not multipurpose solution, just plain saline) on the bathroom counter. That way if I’m tempted to rinse my lenses, I’m not going to burn my eyes out by accidentally using Clear Care. That’s my little tip for you all. But if you’re noticing your contacts are really bothering your eyes by the evening, give this stuff a try. It totally makes a difference for me.

The Thing I Don’t Like, and want to complain about, is the VA healthcare system. At least the VA in this part of Michigan. Dave caught some kind of upper respiratory virus the first week of September, and has been coughing ever since. It’s kind of a pattern with him; it usually turns into bronchitis, sometimes pneumonia. He waited a while, figuring it would go away on its own, but finally he’d had enough. He decided it was time to go to urgent care, get an x-ray and whatever medicine he needed. I knew he had to be feeling really bad because Dave is even worse than I am about going to the doctor.

So we started checking out where the nearest VA hospital was. In Illinois, it was a 40 minute drive to Hines VA but they had an emergency room so he was always seen, even if it involved a bit of a wait. It turns out that there really isn’t a VA hospital nearby; Benton Harbor has a clinic with one doctor and no urgent care, according to what they told Dave. There’s a hospital in Battle Creek, which is 1-1/2 hours away by car. There’s a clinic in South Bend, IN which is the closest to us, but they claim they don’t have a walk-in clinic (although they do have a lab, do x-rays and that sort of thing).

So he held off another day or two, and then he decided to make the long drive to Battle Creek because he was really feeling sick. He insisted that I stay home; he wanted to get on the road really early so he left before I was even awake. I hated that he had to make a three hour round-trip drive but, as he said, it’s free healthcare so he did whatever he had to.

He walked back in that afternoon with empty hands; no medicine, no discharge paperwork. Turns out that they have NO emergency room at the hospital, just what they call an Urgent Care center. But you have to have an appointment to be seen. What the hell?! He got there, was seen by an intake nurse who took his blood pressure and temperature, and was then told it might be a while because he didn’t have an appointment. So he sat out in the waiting room for two hours, before finally getting fed up and leaving. Three hours of driving for that!

One thing they did do was make an appointment for him. For three weeks later, on September 29.

So I was livid, and he was all, “It’s fine, I actually think I’m feeling better,” trying to calm me down. And he did seem better for a couple of days, but then he went back to feeling terrible. So this time he called the South Bend Clinic, which is about 20 minutes from us. Turns out they don’t have a walk-in clinic either, gosh, but they had received his records from Hines (he asked for them to be transferred a week or two prior) and they could make an appointment for him! On October 22, just a little over a month away!

So at this point I’m just freaking out, telling him to go to the walk-in clinic at Walgreens and we’ll pay whatever it costs. But no, he swears that he’s feeling better. In the meantime, I’m despairing because where would we take him if he gets another kidney stone, for instance, and needs to be seen immediately?

So Sept. 29 rolls around and even though he hadn’t planned to keep that appointment (he wants to use the South Bend clinic as his primary care place), he decided to go because he was still coughing. This time I went with. He was seen by an older woman doctor, who just pretty much went over the list of medications that he takes and got them switched from Hines to Battle Creek (they mail his routine medications from the hospital pharmacy). Then she listened to his lungs. And in the process, he had one of his coughing jags.

“Hmmm,” she said dourly, “That sounds like a smoker’s cough. Are you sure you quit smoking?” (He had told her he quit in 1985, which he quite definitely did.) I thought she was joking, but she was serious, kind of bitchy. He confirmed that yes, he quit smoking, and she said, “Well, I don’t hear anything. But if you start to feel bad you can always come back.” And then I was PISSED.

“He DID THAT,” I said calmly, through gritted teeth. “He was here over three weeks ago, really sick, and they sent him away without doing anything for him except to make this appointment.” She just kind of shrugged and said again that she didn’t hear anything that suggested bronchitis or pneumonia, but had he ever used an inhaler? After he explained that he had one but it expired long ago, she did at least prescribe a new one for him. And that was it. He’s supposed to go back in nine months but yeah, I don’t think that’s going to happen.

So now we are waiting for his Oct. 22 appointment in South Bend. Maybe the cough will be gone by then, or maybe it will be worse. Who knows. All I know is, if you live in southwestern Michigan and use the VA for healthcare, you better hope you never need medical attention that same day. Lord knows where you’d get it. (Dave does have good things to say about Ann Arbor’s VA hospital, but that’s a 2-1/2 hour drive from here … it would be shorter to drive back to Hines in Illinois!)

And now, to put a smile back on your face after reading all my crabbing, here’s a fun autumn practical joke:

onionapples

Is anyone mean enough to really do this, I wonder?

(I could not bring myself to do that, but I do think it’s funny. )

Self-Sacrifice | Willpower | Becoming Bionic

My two weeks with regular contact lenses is almost up.  Earlier today, I put my head on Dave’s shoulder and mock-sobbed with relief, “I just ordered bifocal contacts!”  He patted me on the back and said, “You done good, kid.”  As the kids and I know, that is High Praise from Dave…his way of saying, “Holy crap, you did an amazing job!”

I hang my head in shame as I admit that after the first day, I seriously thought, “I can’t do this.  I can’t spend another day wearing these contacts.”  It sucks so bad.  I hate wearing glasses, and here I am, wearing (reading) glasses almost all day long.  I have to wear them to see during just about every activity I engage in, except for watching TV and driving.  At the end of the day, when I finally take the glasses off, I can still feel them on the bridge of my nose.  It’s like phantom pain, except not really pain, just pressure.

I know how whiny and spoiled I sound, but hey, it’s my blog and I’ll whine if I want to.  😉  Wearing regular contacts after being used to bifocal contacts is like going back to Windows 3.1.  But I did it, man.  I’m wearing these suckers for their full two weeks, so I have to suffer until this Friday.  But then I can switch to the one pair of bifocals I’ve been hoarding…by the time I’m done with those, my new shipment of contact lenses will be here.  Huzzah!

In other amazing feats of self-sacrifice, yesterday was National Ice Cream Day.  Did you know that?  I didn’t realize until someone mentioned it on Facebook in the early evening.  I like me some ice cream, but nobody likes ice cream like Dave does.  It was no surprise when he turned to me after dinner and casually said, “Hey, maybe we’ll run out and get some ice cream later on.”  This is kind of a big deal for us because we almost never eat after dinner – we eat early (we’re usually finished by 6 pm) and then don’t eat again until around 10 am the next day.  After some discussion, we decided to use a Culver’s coupon for Concrete Mixers.

Since we don’t do this very often, we didn’t know what flavors they had.  I pulled up the Culver’s website so we could check out our options, and then made the mistake of clicking on the Nutrition tab.  The coupon was for a medium size (buy one, get one free), and the calories in one Concrete Mixer of that size were equal to about half of my entire daily allotment of calories.  If I hadn’t read that, I probably could have eaten the entire thing without a second thought.  Instead, I did some quick math and decided to split it into three servings:  One for last night, and the other two for today (one for me, one for Dave).

So yes, I came home and weighed my Concrete Mixer, took out five ounces and put the rest in the freezer.  How’s that for willpower?  (Well, I know I could have just not had any at all but…it was National Ice Cream Day!)  I got Mint Oreo, and it was really freaking good.

When we went out for the ice cream (custard…we’ll call it the same thing), we realized it had really cooled off.  Yesterday started off fairly pleasant, and then hit ‘hot, humid, disgusting’ levels by early afternoon.  We had the air conditioning on and had pretty much stayed inside all day so we were pleasantly surprised by the cool outside air.  We came home, turned off the A/C and opened the windows.  When we went to bed, though, I had to turn on the overhead fan.  Poor Dave.

This is how it goes in our house lately, thanks to my perimenopause and Dave’s thyroid craziness.  I never used to sweat, ever.  I mean, I could do the Jane Fonda workout and not a bead of sweat would grace my brow.  Now that I’m staring down menopause (not there yet, but I’m almost 49 so it’s on the distant horizon), I sweat.  Especially if it’s humid.  And I’m not used to it, so it grosses me out.  It’s like walking around wearing a damp bathing suit under your clothes, all day long.

One thing that helps is keeping a fan going, blowing cool air on my skin.  But Dave’s crazy thyroid makes him get cold much easier, so while I’m standing in front of a fan, he’s wrapping up in a quilt.  I saw the look on his face when I turned on the bedroom fan before climbing into bed, so I took my side of the sheet and blanket and threw it over him, wrapping him like a burrito.  Poor guy!  His next thyroid test is this Friday.  He’s been feeling less tired, so we think his thyroid level must be coming down, but things still don’t feel ‘right’ just yet.  We’ll know more when his test result comes back next week.

Today, by the way, is the day I had my cochlear implant surgery five years ago.  (Let’s just say that I feel a LOT better right now than I did at this time five years ago.)  I don’t think I’ll ever be able to just go about my business on July 22 without remembering that.  This is the day I became bionic!

Slowly Becoming Obsolete

Not much has been happening here, other than being slammed with a wave of heat and humidity, and praying for no power outages whenever a storm rolls through.  Having the car in the shop for three days kept us homebound (not that I wanted to be out and about in the heat anyway).  Our biggest entertainment was waiting for the phone to ring, so we could find out the damage on the car repairs.  (More than I wanted to pay, but less than it could’ve been, so…yay?)

I did notice, when I was looking at the calendar earlier this week, that my five year cochlear implant surgery anniversary is coming up (next week on July 22).  It doesn’t seem like it’s been that long…and then other times it kind of feels like I’ve had CIs forever.  What really illustrates the passage of time, though, is new technology.

When I got activated in August of 2008, I got the newest Advanced Bionics processor on the market at the time, the Harmony.  There were people still upgrading from earlier models at that point, and it was kind of exciting to have this cutting edge tech sitting on my ears.  Since then, there have been some new software strategies released (and I did get ClearVoice last year, which I love) as well as the Neptune, which is their waterproof, off-the-ear processor.

From time to time I mentor people who are considering getting an AB cochlear implant; since I got both ears done at once, I often correspond with people who are considering that option.  But now I’ve noticed that I’m not as useful when it comes to the hardware.  I can definitely talk about what it was like to have both ears operated on and activated, but I have no idea what it’s like to wear a Neptune, or what all the accessories are.

On top of that, Advanced Bionics has a new behind-the-ear processor coming out soon, called the Naida CI Q70.  Anyone that’s activated at this point will get that instead of the Harmony (I believe they get a voucher that they can trade in for the new BTE when it’s officially available).  Which is awesome, of course – but that makes me kind of obsolete.  Already!

I’m hoping to upgrade to the Naida Q70, depending on the cost and my insurance coverage, next year sometime.  Still, though, it’s strange to think that my newfangled bionic ears are being passed by already.  Of course, they are still amazing and work just fine – it’s just not as easy to upgrade bionic ears to the latest and greatest as it is to upgrade your phone or your computer.

I’m only five years into this…kind of makes me wonder what lies ahead in the next ten or fifteen years, you know?  Hopefully technology will just keep advancing by leaps and bounds.  What I’m really waiting for isn’t even for me, but for my friends with degenerative vision diseases and conditions…I really want to see them get implants to help with vision the way cochlear implants help with hearing.

In other news, Dave got his very first cell phone…is he possibly the last person around to get a cell phone?  He’s resisted with all his might, and then something just snapped and now he’s a little obsessed.  It’s kind of fun to see him playing with his new toy, even if he won’t give his phone number out to anybody.  (He’s got a pay-as-you-go plan and doesn’t want to use his minutes for anything!)

On the Road Again

It’s been a long time since Dave and I took a road trip.  Usually we make at least one trip to Michigan each year, but when gas prices became astronomical we were hesitant to hit the road.  It was one thing when gas was $1.99 a gallon, but at one point it was nearly $5/gallon here in Illinois.  Crazy!

We realized, though, that we definitely never made a Michigan trip last year, at all, and really couldn’t remember when our last trip was.  At this point we’re a little numb to the gas prices (when we left yesterday, we got a few gallons at a station near our house and it was $4.04 a gallon…we didn’t even blink an eye).  So we made plans with Dave’s sister, Laurie, got up bright and early yesterday and then, as always, didn’t actually get on the road until 7:30 am.

Depending on which way we go, traffic conditions and how many times we stop, we usually can make it there in four to four and a half hours.  We were heading to the tollway and the first entrance is always unmanned; you just toss your coins in the basket and go.  This toll used to be about 20 cents (I swear it wasn’t that long ago!) but we couldn’t remember how much it was now.  Dave was thinking 80 cents, which sounded about right to me, but I decided to check on my phone’s browser before we got there, since we weren’t exactly rolling in change at that point and you can’t toss dollar bills into the basket.

“Um…honey…that toll is $1.50 now!”  I looked at Dave in shock.  “I don’t think we have $1.50 in coins…do we?!”  A quick glance confirmed that no, our coin situation was not that flush, so when we stopped for gas Dave went in to buy a lotto ticket (no, unfortunately we didn’t win) and got some change for the toll.  Crisis averted.

We started driving and the first toll came up, and it was $2.50.  We both started freaking out.  “What?!  This toll used to be 40 cents!  What’s going on?!”  We were like two old-timers reliving the good old days, but really, I swear it wasn’t that long ago that this toll was truly 40 cents.  We begrudgingly paid and went on; the next toll was $1.90 which wasn’t quite as painful.  We started joking about the fact that we were going to just bring $10 to cover tolls there and back, and it’s a good thing we went with $20 instead since we still had the Indiana Toll Road ahead of us.  It made me think of when I was a teenager and I asked my dad for money to buy new jeans…and he handed me a $10 bill.  Now I can see how he so quickly lost his frame of reference as far as what things cost.  Sorry, Dad!

As we got to the last toll in this particular stretch, we could see the warning signs letting us know a toll booth was approaching…and that this toll was $3.80.  Well, that just blew our minds.  $3.80!  For one toll!  What was the world coming to?!  (I’ll tell you what…it’s the tollway’s way of forcing people to buy an I-Pass, which we don’t have because we use the tollways once every two or three years, apparently.)  As we had an animated discussion about this latest toll, Dave said, “Uh…what just happened?  What happened to the toll booth?”  I glanced up and saw that we were sailing through the section of the road that said ‘Open Road Tolling,’ leaving the toll booth quickly receding in our rearview mirror.

“Huh,” I mused, “I think we just blew through that toll.  Now what?!”  Luckily I saw a sign coming up that gave a website where you could go to pay an unpaid toll.  I grabbed my Field Notes book and jotted it down, along with the amount of the toll.  Pro Tip:  If you do this as well, also note the time of day and the location of the toll booth.  You’ll need those things when you pay the toll online.  *deep sigh*

After we drove along for a while, we were in the middle of another good discussion when Dave said, “Hey…is that the exit for the Indiana Toll Road over there?”  And sure enough, there it was, fading quickly in the distance to my right as we sailed on by.  Dave shrugged.  “Oh well, no biggie…we’ll take 12, it’s not much longer than the toll road, believe it or not.”

So we got on US Rt 12 and drove along, until we reached Niles, Michigan.  (This is the area we want to move to, if we can ever sell our freaking house, for the love of God.  Ahem.)  It was 10:30 our time, but 11:30 Michigan time, and we’d been up since 5:30 so we were getting hungry.  We figured we’d stop for a quick lunch and eat in the car so we could get right back on the road.  (As a side note, when I pulled out my phone in Michigan, I noticed that it automatically switched to the new time zone.  I don’t get out much, and I’m not a big cell phone user, so this may happen with all the phones now for all I know.  In any case, I got a huge kick out of it.  I’m easily entertained.)

We had stopped for gas not long before we stopped for lunch, since gas was 30 cents cheaper in Michigan (what’s up with that, Illinois?!) and our tank, at three-quarters full,  was filled up more than I’d seen it in many months.  We usually put in about $15-$20 at a time, and that gives us maybe a quarter of a tank if we’re lucky.  I pointed it out to Dave, as we waited for our food to come to the window at the drive-through.  “Look how high our gas gauge is!  I can’t remember the last time I saw it that high.  And hey, how come the temperature gauge is as high as the gas gauge?”

Sure enough, the temperature gauge was hovering just below the ominous red area next to the H.  It’s normally below the mid-point between Cool and Hot.  We got our food and got on the road, both watching the temperature gauge nervously.  As we drove, it went back down to the normal position.  Still though, every time we came to a stop, we’d watch that gauge.  It was impossible to look away.

Stopping at a stop light wasn’t a big deal, but we got stopped at a train not much further down the road and at that point we watched the needle creep up again.  Dave had noticed this happening back in April when he was working on the car (replacing the starter and, ultimately, replacing the battery which turned out to be the real culprit).  At the time, he did some stuff with ground wires and (mumble mumble car stuff) and it seemed to be okay.  This was the first time we noticed an issue with it again…of course, when we were on a long car trip!

I was reading the manual for the car, which mentioned something about a … fan belt, maybe?  Some kind of belt, anyway.  So Dave pulled over and checked that, and it was fine.  We drove some more and he decided maybe the radiator was dirty, so we stopped at a self-serve car wash and he rinsed it off, then added both our bottles of water to the radiator.  After that, the needle didn’t go too high but we couldn’t help but watch the gauge every time we came to a stop and the car was idling.

Because of all our stops, it ended up taking more like five and a half hours to get there.  But it was so worth it!  Time just flies when we visit, and I absolutely love visiting with my sister and brother in law, my nieces and nephews and their kids – our visits never last long enough for us!  When it came time to head back home, Dave and I agreed that we can’t let so much time pass between visits.  The gas was really not bad at all, and at least now we have a realistic expectation with the crazy tolls.

Speaking of which, on the way home we had the bright idea to just bypass the three most expensive tolls since I was already going to have to pay online for that first one from earlier in the day.  I did jot down the amounts and the toll locations when we were coming home, but not the time we passed each toll booth.  I just got done paying the tolls online and believe me, it would have been a faster process if I’d had all the right information!

In more positive road trip news, I brought along some CDs in case we wanted to listen to music.  We generally don’t listen to the same music – Dave is a country boy and I’m an 80s/90s alternative girl.  We do, however, both like ‘classic rock’ (I guess that’s the term) so I grabbed Hot Rocks by the Rolling Stones, Steve Miller Band’s greatest hits, and Dave had a compilation with Bob Seger, the Eagles, etc.  Normally we don’t listen to music in the car because in order to hear the music well, we have to turn it up pretty loud…and then we can’t hear if we talk to each other.  And obviously, we like to talk to each other!

Normally though, we spend the four (or so) hours going there doing nothing but talking.  At night, we talk a lot for the first hour and then as it gets darker (and we get more tired) we drive in silence for longer stretches.  So I broke out the CDs for those quiet stretches.  This was the first time since I had Clear Voice added to my CIs last summer that we drove in the car with music playing.  We had the volume up to where we could both hear well, and then Dave pointed out some deer on the side of the road.  (And he told me to send them vibes so they would stay there, and not in front of us on the highway!)  I realized I could hear him really well – his voice just came through nice and clear, and the music faded into the background while he was speaking.  It was a fun way to cap off a great day!

The Butterfly Effect

Every so often, I get a request from Advanced Bionics to mentor a person who qualifies for a cochlear implant and has questions, or would just like to talk to someone who already has one.  It’s strictly volunteer; I don’t get paid for doing it and I can choose whether or not to accept the mentoring opportunity.  The majority of my mentoring has been done online, via email.  This past weekend, though, I got the chance to talk with a fellow who lives in the area and was hoping to talk to a CI recipient face-to-face.

He and his wife came by and spent a few hours talking to me and Dave.  We really enjoyed talking to them, and we found that we had a lot in common regarding this invisible ‘disability’ of ours.  We were the first hard of hearing/deaf people he had ever met in person.  I can remember what that was like, meeting my first hard of hearing (HOH) friends.  Growing up, and into my early 30s, I had no friends or even acquaintances with hearing loss.  I was the only person in school with a hearing loss (that I knew of, anyway).  All of my family members, friends, boyfriends and my first husband were all ‘hearing people.’  It is such a relief to finally talk to someone who gets what it’s like to have people assume you’re stuck up or rude because you don’t respond to them, someone that knows what it feels like to have people assume you’re doing fine because you can hear a certain sound…but they don’t get that just because you hear it doesn’t mean you understand what you’re hearing.

In late 1996 through 1997, I was a single mom with two young children, working full time and getting used to doing things on my own.  I was going along okay, feeling pretty proud of myself for my coping skills, when I got a raging, horrible ear infection in my good ear.  (At this time, I had a severe loss in my left ear and was profoundly deaf in my right ear; I wore a hearing aid in my left ear, which was my ‘good’ ear.)  I used to get periodic middle ear infections from having an ear mold in my ear all day long; they were painful but I could deal with them.  This one, however, was beyond anything I’d ever experienced.  I was running a high fever and in so much pain that all I could do was cry.  I saw my ENT, and he actually had to place antibiotic-soaked cotton down inside my ear with some kind of instrument (I cringe just remembering this!) because my ear canal was so swollen that drops would not go down inside to where they needed to be.  He also prescribed antibiotics, as well as Vicodin for the pain.  Usually I can’t take Vicodin; it makes me sick to my stomach.  I broke the pills in half and, let me tell you, it was the only thing that would even bring me a touch of relief.

I was off work for a week as I dealt with this, and my parents took the kids for me.  The cotton deep inside my ear, combined with the fact that I couldn’t wear my hearing aid, rendered me completely deaf during that time.  It was my first experience with total deafness, and it scared the crap out of me.  I realized I was not really that far away from being deaf, and that I had no coping mechanisms in place for it.  That’s when I got my bed shaker alarm clock, and started looking into online support groups for people with all forms of hearing loss.  That’s when I got my first deaf and HOH friends.

I joined a mailing list, which still exists today, called the Say What Club (SWC).  When I introduced myself, I explained my hearing history and what I was currently dealing with, and expressed an interest in learning sign language.  Everyone was so welcoming and friendly, and I was amazed at how good it felt to talk to other people who knew what it was like to deal with hearing loss.  One of the people who welcomed me was Dave, and that is how we met.  He sent me a huge box filled with books and videotapes on sign language, since he used to teach it.  I was blown away by his thoughtful gesture, and I really liked the way he expressed himself in writing, so we became fast friends.

At the time, I was casually dating (a couple guys from work, a couple people I’d met online) and really having no luck with it.  I was getting fed up with dating in general and was about to swear off any kind of love life for a few years, until the kids got older.  It wasn’t worth the hassle.  Dave was just a few years out from his bone marrow transplant, and he felt it wasn’t fair to get into a relationship with someone because who knew if his leukemia would come back or if he might have some other complication.  So we were just friends, writing emails and meeting up with other SWC friends in chat rooms.  I can remember kind of yelling at him about his reason for not dating somebody – I mean, we could all die tomorrow…is that a reason to pass up an opportunity for love if you find it?

As 1998 came along, I could tell he was starting to like me as more than a friend.  We hadn’t met in person, and I tried to discourage him because I knew what it was like to meet someone in person after knowing them online.  You kind of fill in what you don’t know with your ideal image of what you want in a person; once you meet them for real, it’s kind of hard for them to live up to that imagined ideal.  He basically blew off my warnings, sure that everything would be just fine.  I was nervous, worried that he’d meet me in person and be truly disappointed, and then our friendship would be awkward and weird.  I didn’t really tell anyone about our burgeoning relationship; this was back when meeting someone online was fairly rare and everyone was convinced that the only people who would do that were serial killers and psychos.

We made some tentative plans, and then our actual meeting ended up being really spontaneous.  It was the end of March, and my plans with a friend from work had fallen through.  It was early Friday night, the kids were at their dad’s for the weekend, and Dave called.  As we talked, I mentioned my now-free evening and he said, “How about if I come over?”  I thought he was joking, but that’s exactly what he did!  He drove from his apartment in Michigan which, at the time, was over four hours away.  He got a little lost so he didn’t arrive on my doorstep til nearly 11:00.  This was before the days of cell phones (especially for hearing impaired people) so I just had to wait and wonder if he would ever show up.

When I opened the door, I was so scared.  I mean, what if I hated this guy in person?  And he was there, in my house…how would I get rid of him?  It wasn’t like a date in a restaurant, where I could make an excuse and leave.  My first thought was that he was shorter than I pictured; I was standing a little above him in the doorway, while he stood further down on the porch.  When he stepped in, smiling broadly, I realized he was actually the perfect height for me (I’m barely 5’1” and he’s 5’8”).  We hugged, he proudly showed me the WebTV device he’d brought along (this was how he accessed the internet — no computer for Dave) and we started talking.  It took me about five minutes to realize everything was going to be just fine; he was basically the same in person as he was in email –  funny, articulate, interesting and kind.

That was nearly fifteen years ago and the rest, as they say, is history.  We dated long-distance for a couple of years, and then Dave moved here from Michigan.  We got married Feb. 2, 2002 – we’ll be celebrating our eleven year wedding anniversary in just two weeks.  All of that from one chance gesture, reaching out to connect with people in the same boat as me.  Ain’t life grand?!

Being Bionic

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 the latest 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 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 wear a CI and a hearing aid.  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 CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).

Perspective

Three years ago, I woke up on this day and put on my hearing aids.  I didn’t really expect to hear anything; the day before was my doctor appointment/hearing test when I found out I was totally deaf in both ears.  But still, there was that little hope that maybe they were wrong, maybe my hearing was coming back.

Just the act of waking up and remembering my hearing was gone made me sick to my stomach.  Another day of working so, so hard to understand what everyone was saying.  All I had to rely on was my speech reading skills, with a few signs and finger-spelling tossed in.  My mind was just in constant turmoil; I wanted to curl up in bed and cry and refuse to believe this was happening to me, but I had my kids to think about, candles to make and ship.

The first entry in my blog was called “Hindsight is 20/20.”  In that entry, I was looking back at that day, wondering if it would have mattered if I had realized all those ‘weird hearing’ moments were actually a sign of things to come.  Maybe I would have gone to the doctor sooner…would that have helped preserve some of my hearing?

Now, though, I’m thinking that I wish I could have looked forward from that day, or that time in general.  If I could’ve seen myself today, right now, sitting here typing and hearing the keys as I hit them, hearing the door slam as Dave goes out to the garage, hearing Toby’s doggie nails as he walks across the floor…well, I could’ve been spared so many days of sadness.  I would still have grieved losing my natural hearing, because nothing can bring that back.  But if only I had known that this absolutely amazing technology would let me hear things I’d never heard before!

I was talking to Dave about the fully-implantable CIs they are working on –you have to have surgery every 10 years to replace the implant because the batteries only have a finite life (of course).  As we debated the pros and cons, I realized that I really like the situation I have now.  I really don’t mind being in my ‘natural’ (deaf) state when I’m sleeping, for instance.  If I had the added input of noise and sound, I’m not sure how well I’d be able to sleep.  Even when I still had some hearing, I took my hearing aids off at night and had a much reduced level of sound coming in.  I’ve basically never had full hearing while I slept.  I definitely wouldn’t want to have surgery every 10 years!!  On the other hand, it would be awesome to be able to hear while I was swimming, and to not worry about getting my CIs wet if it’s raining.

Right now I feel like I have the best of both worlds.  Who knows what the future brings?  Someday I might write another blog entry referring back to this one, talking about all the wonderful advancements I wish I had known about back on April 17, 2011.  😉

Get the Balance Right

It’s been a year since my last mapping, which is CI-speak for reprogramming my cochlear implants.  When I first got them, I went to the audiologist weekly for new maps.  Then I progressed to every month, then 3 months and finally, 6 months.  This is the first time I’ve gone a year between mappings.

The audiologist who did my last 2 mappings was out on maternity leave, so this time I saw Kathy.  She did my original hearing tests when I first lost my hearing in 2008, and also did my CI assessment.  However, she was on maternity leave when I had my surgery and was activated, so she has actually never done a mapping for me before.  I was excited to work with her again because I really liked her and she was so nice and helpful when I was going through my evaluation process.

Kathy was still with another patient when I was brought back, so a different audiologist (Kris, who did my activation and most of the early mappings) and intern/student got me started.  They took me right to the sound booth for testing (my favorite thing, whee).  There doesn’t seem to be a set pattern with this – sometimes I’m given the hearing tests before my mapping and sometimes they wait and do it after I’ve been mapped.

I started with the tones, and they let me choose which ear to test first.  I opted to go with my right ear first, which is the one that’s been deaf the longest and performs worse on these tests.  It stresses me out the most to have this ear tested by itself, so I figured I’d get it over with and then my results would get better from there on in.  This actually took away some of my ‘perfectionist’ stress – the hearing tests always make me feel like a bit of a failure, even though I know that’s ridiculous.  (I mean, if I was tested without my CIs, I wouldn’t be responding at all – I looked at my hearing tests from when I lost my hearing and the marks are almost all along the 110 db line with little arrows down to 120 db, and a couple around 100 db.)  But starting with the worse ear and working my way up made me feel like I was accomplishing something as my responses got better.  Just one of my weird personality quirks, I guess!

They tested each ear separately and then both together.  I always forget to ask for the results of these tests (so I don’t have official results in front of me) but they did mention that I didn’t give a response for some of the higher frequencies.  These are still almost impossible for me – if I get anything at all, it’s just the sensation of the CI processor compressing the sound down because those high pitches set off the noise compression program.   This time I didn’t even sense that – I guess I just wasn’t hearing the higher pitches at all.  I think this was with my right ear – I know she said it happened with one of my ears, not both.  (I was using my regular listening program, not the background noise compression program, but even the regular program will compress.)  We did work on the high pitches later on during the mapping; more on that later.

After the tones, I listened to the man speaking sentences.  Last time I was tested, the audiologist spoke the sentences and I did much better than normal, especially once they added in the static/background noise.  This time, I did pretty good in quiet – I’m not sure about my right ear, but I got 100% correct with my left ear only and with both ears.  In noise, I think I just caught a couple of words with my right ear – it is very, very difficult for me to pull his voice out of all the background noise – and I did better with my left ear, and then FAR better with both ears.

I was quite relieved to get out of the sound booth and go back to the office for the official mapping!  Kathy started by asking me to just talk to her about my hearing for the past year.  I explained that for at least the past 6 months, I had been using the background noise program pretty much exclusively.  (My cochlear implants can store 3 different sound processing programs or strategies.  I have one for regular listening in Slot 1, one for background noise compression in Slot 2, and one for the Direct Connect earhook in Slot 3.)  The regular listening program was just too loud; I felt like it was overwhelming, my voice sounded very loud and echo-y to me, and the background noise compression program was just more comfortable.

I had really not used my Direct Connect program at all – I was mainly using this to connect to my mp3 player when I was using the treadmill, and now I walk with Dave on a daily basis and almost never use the mp3 player.  So I asked if I could try a T-coil program on that third slot instead (to help with the phone and utilize things like FM and loop systems that usually use T-coil).

When I get mapped, I have to take off the CI that is not currently being mapped.  I hand the other one to the audiologist and she removes the rechargeable battery and slips on a connector that connects my CI to her computer via a long cord.  Then I put the CI back on.  During all of this, I don’t hear anything at all so I rely on speech reading.  She hands me a chart to use to indicate whether the sound I’m hearing is too loud, too soft, comfortable, etc.  There are probably 8-10 different levels of sound I can indicate on the chart.  This time, I also got a chart to use for comparing the volume level of two different sounds.  This was totally new to me and I really liked it – she was using it to try to make sure all the electrodes were at a similar, comfortable volume.

So I’m sitting there in total silence and then all of a sudden I hear a “boop boop boop” sound coming into my ear.  I listen for a second and then indicate if it’s comfortable, too soft, too loud, etc.  Then I hear a different tone for a few seconds, then the original one.  Now I have to report whether one sounds louder or softer than the other.  It’s kind of tricky, because they are different in pitch – some are high pitched, some are low – and I need to just think about how loud they sound.  Most of this mapping was done with comparing the volume of two different electrodes, and it was really interesting to do it this way.  I felt like it really helped to be able to compare the volume of two different sounds rather than just listening to one and reporting whether it was too loud or too soft.

Once all the electrodes are mapped (and I’m still connected to the computer), the CI is turned on and I have to listen and let the audiologist know how things sound.  My initial reaction is to always say it’s too loud, partly because when I first put my CIs on, the big rush of sound is always a bit loud and overwhelming.  If I wait a couple of minutes, things settle down and sound okay.  So Kathy reminded me of this, and suggested we just talk for a few minutes.  I had Dave talk, so I could see how his voice sounded, and the four of us just chatted for about 3 minutes.  I was surprised to find that I didn’t need the sound lowered after all – things started to sound really good and comfortable volume-wise.

The right side was mapped the same way – I took off my left CI, was connected to the computer and, again, I compared the volume of two different tones for the majority of the mapping.  I still have some high pitched tones that just make me completely dizzy – I hear them and my eyes feel like they are spinning around in my head.  I discovered that I already had one electrode turned off on the right side (there are 16 electrodes on each side) and Kathy ended up turning off two more.  If I remember correctly, I think she said that they were probably in a part of the cochlea that wasn’t effective and if they stayed on, things would sound worse (and I would get that vibration/dizzy feeling).  When they turn off an electrode, the frequencies get allotted to another electrode so it doesn’t affect the quality of what I hear.  I hadn’t even realized I had one electrode already turned off on the right side, so this was a very informative mapping session.

Things sound really good now – she worked on those high frequencies to make sure I’m getting more of them.  Even though I don’t like the sound of high frequencies, they are really important for speech and clarity.  Now I’m using the regular listening program 90% of the time, and I only switch to the background noise program if I’m in a really loud situation.

I also found out that my background noise program was only at 40 IDR (Input Dynamic Range, which basically is how many sounds are allowed in).  Normal IDR is 60 (I believe she said it used to be 70).  You can have your IDR set up to 80 if you wish – it’s all about what you feel sounds best.  But 40 is pretty low!  She changed the IDR to 50 on my background program and made my other programs 60, but said I can have it increased if I want (or lowered).  Right now I feel like it’s a good setting for me – I can tell I’m hearing more on the background program, but the loud noises are still compressed so it’s kind of nice to get a bigger variety of sound.

I will probably go back sooner than a year if ClearVoice is approved before September 2011.  That’s a new software strategy that is currently in FDA trials and is awaiting final approval.  I know quite a few people outside the US that have it already and really like it, so I asked Kathy to email and let me know as soon as it’s available here.  She said they are going to start training on it in October (next month).

One final note – my SlimCell batteries were starting to last for only about 6 hours, which is really short.  I’ve noticed since my mapping that they last longer, which is kind of weird – but it’s a nice side effect, so I’m not complaining!

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