Monthly Archives: March 2015

Feeling Fragile

A couple days ago, we were eating dinner – sweet peppers, kale, ricotta and pasta. The pasta was farfalle (or bow-tie) and I was doing my goofy eating thing where I cut them in half first, separating the two sides with a swift press of my fork or, as the case may be, bite of my teeth.

Normally I use my fork, but this night I was being lazy and just biting them in half. I bit down forcefully and the next thing I know, I was jumping up and yelling, “I think I just cracked my tooth in half!”

When I bit down, I bit down HARD on my fork. I’m surprised I didn’t bite the fork in half along with the pasta.

I ran into the bathroom, expecting to see a jagged remnant of my top front tooth. I bared my teeth, stared – nothing. But I could feel grittiness, the sensation that something was stuck between my top two front teeth; even my bottom front teeth felt gritty and just wrong. Nothing was obviously broken though, so I sat back down. I showed Dave my teeth. He shrugged; he couldn’t see a problem.

I kept eating, kept running my tongue over my teeth. The front of my top front right tooth felt rough and strange. I figured maybe I scraped the enamel with my fork. My bottom teeth didn’t feel as weird but something felt different there too. I got back up to check my teeth in the bathroom mirror.

I stared, really stared, and then I could see it – just a miniscule, teeny tiny chip off the edge of my front teeth, top and bottom. You wouldn’t know they were chipped just by looking. There was no sharp edge. When I went back to show Dave, it took him a long time to even see what I was pointing at. But it was there.

It didn’t hurt, and my teeth weren’t sensitive. Just a stupid mistake on my part but still, it freaked me out.

When I woke up the next day, the first thing I thought of was that I’d chipped my teeth. When it happened the night before, I mainly just felt relief that it was barely anything and not, like, half of each tooth broken off. But the next day, I felt terrible knowing that I’d done such a stupid thing to my teeth, my nearly-perfect teeth that have never given me trouble. I was afraid to bite into anything for fear of my teeth shattering. Suddenly I felt like they were fragile.

Later that day I said to Dave, “I know this is ridiculous, but this tooth stuff is really bothering me. I can’t believe I did that. My teeth were so pretty!” Dave, who has endured years of teeth issues, couldn’t resist chuckling. “I’m afraid to eat corn on the cob!” I pouted. Then he talked me off the mental ledge, reminding me that it wasn’t like I bit into a marshmallow, and that my teeth are fine.

It’s a couple days later now and I’ve calmed down. I still check each morning to make sure my teeth haven’t crumbled in the night, but I’m no longer afraid to eat. (I do eat more delicately.) And it’s a good thing that we already have upcoming dental appointments planned. I don’t expect it to be an issue, but I’ll feel better having a dentist look at them just to be safe.

Yesterday I asked Dave to eat the other half of the banana I was slicing up for my cereal. “You should eat the whole thing!” he protested. “You know, bananas make your teeth grow.”

Smart ass. 😉

Overly Optimistic

When I look out the window, I can still see snow … but most of it is melted. The big piles next to the driveway and car shelter are hanging in there, but for the most part it is a vast swath of brown as far as the eye can see. Mud season!

I think I’ve mentioned before that there’s a surprising number of dirt roads around here. We spent a lot of time last summer and fall driving around the area just to get acquainted with things; we’d be motoring along in a fairly established area and then WHOMP … dirt road. One of the houses Dave was interested in turned out to be on one. He tried to talk me into it (he really liked the house) but I was firm in my refusal to live on a dirt road. This season right here is one of the main reasons.

So anyway, the weather’s been fantastic. It kind of went from a high of 20 degrees to a high of 50 overnight, and we’ve had about a week of weather in the high 40s and 50s. We even have mid-60s predicted for this Monday. At first we went a little crazy, going out in light hoodies (me) or no jacket at all (Dave), but that wore off pretty quickly. Yes, 40 feels like a heat wave compared to 20, but once you get used to it (and the wind kicks in) it can still feel pretty damn chilly.

C'mon sunshine -- we're ready for spring!

C’mon sunshine — we’re ready for spring!

On the first warm day, we drove over to the riverwalk downtown. This is really the only place we know of around here (besides the sidewalks in town) to go for a walk and rest assured you won’t be hit by a car. We are outside of city limits so there’s no sidewalks on our street, and Dave basically refuses to walk on the side of the road. The last time I talked him into taking a walk, we set out facing traffic, with the added precaution of stepping off the road into the grass when a car approached. Our street isn’t that busy, so I really wasn’t worried. After we got about a half mile down the road, though, Dave turned toward me and dourly said, “You know, this is how Stephen King got hit by a truck.” I gave in and we turned back towards home. Our next walk was down by the river, safely ensconced on the sidewalk.

When we pulled in to park by the river on this fine spring-like day, we saw that there were still big mounds of snow across the sidewalk. Nevertheless we walked, dodging snow and huge puddles of water. After a while, Dave nodded at me. “Go ahead. Give it a shot.” I knew he was talking about jogging. I had been itching to get outside and jog for real, after a winter of jogging inside on my trampoline. I was so proud of myself; I had finished the Couch to 5K program and had gotten to a point where I didn’t feel like my lungs were about to burst out of my chest after 40 minutes of jogging. I was ready to sign up to run a 5K. Let me at it, man – I want to run free like a gazelle, under the sunny skies!

I could see that the sidewalk ahead was clear of obstacles, so I set out at a comfortable jog. We won’t call it running – I do more of what Dave calls the Airborne Shuffle. I made it, oh, I don’t know … maybe 20 yards, and then I stopped and looked back at Dave. “This is hard!” I whined.

I was so disappointed. It felt absolutely nothing like jogging on my mini trampoline. Every time my feet hit the pavement, I felt the shockwave through my body. My upper thighs were screaming and my heart was pounding.

I seriously thought I was just going to float down that sidewalk like the runners I see around town, moving effortlessly, their ponytails swinging to and fro. The transition to outside running was a complete shock to me as I lumbered along.

“Am I doing it wrong? Is there something wrong with my form?” I thought maybe if I changed some small thing, it would feel better. “No, you’re fine,” Dave reassured me. “It’s just a different muscle motion when you run outside. You’ll get used to it.”

So, damn. Guess I gotta start back at square one. If we sign up for a 5K any time soon, it will be to walk the course and not run.

Better than sitting on my butt though, right?

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).

Stuck Out

Last week Dave noticed something weird happening with his eyes. He said he saw flashes of light in his periphery, and then a bunch of floaters. Both of us see floaters on occasion, and we know it’s one of the many joys of getting older, but this was above and beyond what he considered normal. It just took a quick Google search to find out that one of the causes could be a detached retina, or a tear. He decided to call the VA hospital and talk to someone there.

He was scheduled for a liver ultrasound on March 9th, so when the VA nurse said he should be seen by a doctor, he asked if it could be scheduled for the same day. The hospital is in Fort Wayne, Indiana which is more than two hours south (by car) from us, so it’s a fairly big deal to make a trip there. They had to talk to the doctor first; when they called back, they said the doctor wanted Dave to come in the next day. Okay, so this was urgent.

After he hung up, I suggested he call the liver clinic and see if they could reschedule the ultrasound for the next day as well. He really seemed skeptical; the VA we went to in Chicago (Hines) was really not flexible as far as changing appointments and getting you in quickly, so he expected the same thing for Fort Wayne. But he called – all they could do was say no, right?

Well, they said it was no problem and scheduled him for an 11 am ultrasound. We were both kind of flabbergasted that it was so easy. The eye clinic visit was not for any specific time; they knew we were coming from far away and told him to just get there as early as he could and they’d get him in.

We left a little after 8 am the next morning, and figured he would do the ultrasound first and then we’d pop over to the eye clinic. As we were driving, I read over the appointment card they’d mailed for his original ultrasound date.

“Hey hon? Um … did you know this card says your ultrasound is being done at the Marion facility? It’s not in Fort Wayne.”

Dave pulled over and looked at the card. “Do you want to call and make sure this is being done in Fort Wayne?” I asked. We weren’t far from home; we could drive back and call with the captioned phone, or he could take a chance with the cell phone and call right from the car.

“What? This is crazy. The appointment says Fort Wayne online!” he protested. He was sure it was just a glitch and they’d used the wrong facility information. We talked some more and decided that if nothing else, the eye appointment was more important, and he knew for sure that was in Fort Wayne.

We got to Fort Wayne around 10:45 am and went to check in. Sure enough, the ultrasound was scheduled for that day in Marion, Indiana … an hour away from Fort Wayne.

In the end, he had the x-ray department cancel the Marion appointment and he just went to the eye clinic. They said everything looked fine and it was just one of those things that happen when you get older. He’s still got to go back later this month for a check to make sure nothing bad has developed in that time frame.

When we got home, he discovered that not only was the ultrasound canceled, but also the video conference appointment with the liver doctor that was being done in South Bend. (This is all part of getting him started on the new Hepatitis C drug either this or next month.) As of right now, he has the video conference rescheduled for a week from today, but they still haven’t called to say whether he has to have the ultrasound done first. We were under the impression the doctor needed the ultrasound results before we had the video conference. (The doctor is in Fort Wayne, but South Bend is only 30 minutes from us so we have video conferences from there whenever possible.)

We had no idea there was even a hospital in Marion; I guess it’s a good thing we found out the way we did and Dave still needed to be in Fort Wayne anyway for the eye appointment. If we’d driven there solely for the ultrasound and then found out we were in the wrong place, after four hours round-trip of driving, we would have been rather irked to say the least.

All of this craziness has gotten us thinking about possibly moving closer to Ann Arbor, which is where the best VA hospital in this area is located – as well as a great place for getting my CIs mapped. (Right now I would have to drive back to Illinois because there is no place around here that does mappings; my old clinic in Illinois is closer than anything in Indiana or Michigan.)

We do love this area, and when we drive to Illinois it’s just a straightforward two hour drive. It’s also super, super affordable (the main reason we chose this part of Michigan). On the other hand, sometimes it doesn’t even feel like we live in Michigan. We can be in Indiana within 20 minutes of driving in the right direction; all the television stations are out of South Bend, and even our weather forecast area is Northern Indiana (they throw far southwest Michigan in there as an afterthought). We want to live in Michigan, though, not Indiana.

So I think we’re going to make a weekend trip to the Ann Arbor area this spring, just to check it out. We don’t think we can really afford to live there (not in Ann Arbor proper for sure, but maybe in a smaller town that’s 30 to 45 minutes away). It will still be fun to see, though.

In the meantime, they’re supposed to be building a VA hospital in South Bend to service all the people like us who are completely stuck out – we have to drive two hours either to Michigan (Battle Creek) or Indiana (Fort Wayne) or Illinois (Hines) to get care for Dave at a proper VA hospital. He does go to a clinic in South Bend for minor things, but anything major (including his Hep C treatment) has to be done at a hospital. The South Bend hospital was originally supposed to be done this year but I believe they still have not even chosen a site for it yet, so we aren’t holding our breath.

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