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Smash & Grab

Earlier this week, the hospital called to confirm an appointment.  We missed the call, so Dave listened to the voicemail while I watched the captioning scroll by on the phone.  They were confirming my Friday morning screening mammogram (the one I get every year at this time), and at one point in the captioning I read, “Please be here at 8 am for chicken.”

The captioning on our phones is usually good for a laugh, and this was an especially good one.  I even joked about it on Facebook, envisioning a mouthwatering meal of chicken awaiting me when I arrived for check-in (what I assume they really meant).

Alas, there was no chicken … just your standard boob-smashing.  This is my ninth mammogram, and before I got my first one I was a bit anxious.  As a woman, you lose a certain amount of modesty once you reach the childbearing years; if you aren’t getting an annual breast exam and pap smear, then you’re submitting to frequent pelvic exams (and then some) when you have a baby.  There’s just no way to go through these things and be shy about exposing your body a bit.

As a kid, I was horribly modest.  I wouldn’t wear halter tops and felt self-conscious in a bikini.  If a dressing room had no doors, I refused to use it.  This last one drove my mom crazy because we used to frequent a few stores that had this setup.  There was just no way I was taking my clothes off in a room full of strangers, with no privacy.  Sometimes she could get me to change clothes if she hung up all my stuff in such a way that it gave me a de facto curtain, but more often than not I dug in my heels and refused.

If you’d told me then that someday I’d let someone manhandle me for about 15 minutes during a mammogram and I wouldn’t even blush, I would never have believed you.  (I also would have sworn, at that tender age, to never have a mammogram, the same way I swore to never have babies because it meant I had to have blood drawn.)

Mammograms don’t bother me at all, really.  They don’t hurt; the technicians are always really nice and laid-back, and have a way of putting you at ease in what could be an uncomfortable situation.  The hospital I go to has a really cushy center for mammograms that I kind of enjoy visiting, so it’s all good.

The waiting room is fairly huge (with a kitchen and snacks and all kinds of goodies) and I never know what direction the technician might be coming from to call me back.  Usually when I’m in a waiting room, I’m on high alert.  I might hold a magazine and glance down every now and then, but I always make sure to position myself where I can see as they come in to call people.  I look up at any sign of movement and read lips to see if they’re calling my name.  This time, though, I sat back with a magazine and became engrossed in an article.  I did get a little nervous because technicians were coming from both directions, usually where I couldn’t see them at all, and oftentimes I couldn’t really understand what name they were saying.  Someone else always jumped up, though, so I knew they weren’t calling me.  Just when I was in the middle of a really interesting article, I heard my name.  The tech was around the corner where I couldn’t even see her, and I still caught my name with no problem at all.  That was a first for me!

Afterwards, we went home and Dave started coffee.  I had just turned on my computer when I heard him talking.  Turns out our bald squirrel friend was on the deck, eating sunflower seeds, and Dave was having a one-sided conversation with him.  This broke my heart because it was so cold that morning, right around seven degrees F.  I was glad he’d made it through the night, but I knew we had a bitterly cold weekend coming up.

Dave set a cat carrier outside, put some peanuts and pecans way at the back of the interior, and left the carrier door open.  He left our patio door open a crack, and waited for the squirrel to take the bait.  He was holding a long wooden stick that he planned to use to slam the door shut once the squirrel was fully inside.  The whole time, he talked to the squirrel and encouraged him.

I couldn’t watch, but I hovered in the periphery.  After about ten minutes, just as the water for our vacuum pot coffee maker was beginning to boil, I heard the cage door slam.  Dave held it shut with the stick, stepped out onto the deck and latched the carrier all the way.  The squirrel was strangely calm, which surprised us both; no chattering or foot stamping, just hanging out on the piece of berber carpet in the carrier.

It was about ten minutes after 9 am and Willowbrook Wildlife Center had opened at 9:00.  After we high-fived, we carried him out to the car, buckled the carrier in, and drove him over.  About 20 minutes later, he was in triage and we were giving our information to the admittance clerk.  She came back to let us know they were thinking he had mange, which is treatable.  After we talked for a while, we gave them a donation (not required, but we wanted to) and headed home, a little stunned that it had all happened so quickly.

It was a pretty great way to end the week.

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Hearing With My Eyes

Dave and I headed back to the VA hospital on Monday for his dermatology appointment.  During his Hepatitis C treatment, a spot on his back started to change and the doctor wanted him to have it looked at.  It was always a little gnarly-looking, but during treatment it would randomly bleed and it developed more of a cauliflower shape.  (He’s had this mole-like thing for, he figures, around 20 years or more.)

I was a little worried, I admit; being the worrier that I am, I had frequently Googled ‘skin cancer’ and I was pretty sure that’s what he had.  The doctor came in and we talked for a bit; our conversation was going so smoothly that neither of us bothered to fill her in on our respective hearing losses.  We usually don’t mention it unless we’re having trouble hearing/understanding somebody; at the hospital, that would usually be a doctor or nurse with a heavy accent or tendency to talk to us while they’re looking away (writing or typing or whatever).

The dermatologist took a look at Dave’s back and casually said, “Oh yeah, that’s a basal cell carcinoma.”  Before I could freak out, she went on to say that it’s really common, easily treated and usually isn’t the type to spread.  She proceeded to look over the rest of his body and found one more spot that she said was a very early stage of basal cell carcinoma, on the top of his head.

As this was all happening, I was following what she said very easily.  She didn’t have an accent and she spoke clearly.  I really felt like I didn’t have a hearing loss at all; it’s very easy to get lulled into thinking you’ve reached a point where you don’t need accommodations anymore.

She explained that she was going to take a biopsy of the thing on Dave’s back, and we’d get the results in about a week; depending on how invasive it was, he’d either have it scraped off or cut out.  Then she turned away and slipped a blue mask over her mouth.  After that, it was like 70% of the conversation dropped away for me.  I could keep up by catching a word here and there and guessing at the content of the rest of her sentence, but it was so much work.

At one point, she turned away completely and asked a question.  I could tell it was a question by the inflection in her voice, but I hadn’t understood even one word of what she said.  Dave gazed at me over her shoulder, raising his eyebrows in a “What do I say?!” kind of way.  He hadn’t caught the question fully himself.  I had to shrug and mouth, “I don’t know!”  Finally he started telling her about our canning adventures; he had guessed that she’d asked what our plans were for the day and apparently he guessed correctly, because she continued the conversation with no ‘What the heck?!’ expression on her face (what we usually see when we respond inappropriately to an unheard question).

I could follow her a little better when I knew what the subject of the conversation was, but I was still having to work very hard to keep up.  If she had asked me a question directly, I would have definitely told her I was deaf and hearing with cochlear implants, and needed to see her lips.  But she slipped the mask off fairly quickly and, once again, our conversation became 100% clear to me.  She went on to zap Dave’s head with liquid nitrogen (he was not pleased!) and gave us instructions on taking care of the area where she took the biopsy.

The whole experience really made it clear how much I still use visual clues to ‘hear.’  I can go for so long with no problems because I spend most of my time with Dave, and I can carry on a conversation with him from another room – I’m so used to his voice, I don’t need to see his face to understand.  My cochlear implants work so well in most situations that I can get lulled into feeling like my hearing is 100% normal with them.  Then I have a situation like the one at the dermatologist’s office, and I get served a little slice of humble pie.

It’s all good – no complaints here; believe me, I will never complain about my cochlear implants!  I just need to remember that my eyes are just as important as my ears in my whole hearing experience.

Tomatoes, Fambly, Cochlear Implants

1.  Our tomatoes are starting to ripen, so I took a photo of the four types of heirloom tomatoes we appear to have in our garden.  The small plum-shaped tomatoes are Amish Paste; the larger plum-shaped tomatoes (with kind of an indent in the center) are San Marzano.  (Confession time:  We had these mixed up, and it was only when I referred back to the catalog for this blog entry that I realized this.)

Four types of tomatoes from our garden - 2013

Four types of tomatoes from our garden – 2013

The two types of mystery tomatoes are round, and one is no longer a mystery now that they’ve ripened up.  We confirmed that one type is from Russia, called Nature’s Riddle.  We originally thought it was a pink variety, and then we realized the top was actually yellow.  We ended up finding them in the Striped section of the catalog – the top ripens to golden yellow and the bottom becomes a salmon-pink color.  Pretty cool!  The others are still a mystery … but they are very pretty, we have a lot of them and, luckily, they are delicious.

2.  The family is doing well:  Dave is starting to feel better – his graft versus host issues seem to be letting up a bit.  Paige set out on her own and has moved in with some friends, so we are wishing her well as she moves on to this next stage of her life.  Eric came out for a visit over the weekend and is still enjoying his life in the big city; we had a great visit and got to watch the first two episodes of The Heroes of Cosplay with him.

3.  When I originally got my cochlear implants, I worried for a while over whether I should just get one or do both ears at the same time.  One of my concerns was that having two CIs would double my costs.  So far that hasn’t been much of an issue, but now I’m considering an upgrade and that money thing is coming into play.  Advanced Bionics has a new, just-approved-by-the-FDA processor called the Naida CI Q70.  It is VERY COOL and has lots of new capabilities that I would love to have; it’s also smaller, has an option to wear it off the ear and also to use regular batteries if I want (instead of the AB rechargeables).  I’ve had my CIs for just over five years now, so I qualify for an upgrade through insurance (not sure though if they will pay for one or both – I’m waiting to find that out).  I would still have to pay 20% out of pocket, though, and that comes to a few thousand dollars that I don’t have.

Luckily, I don’t NEED an upgrade – my Harmonies work just fine.  Since there’s no urgency, I can save some money and wait a while before I upgrade.  (We don’t use credit cards, remember, so no slapping down the plastic to pay for these babies!)  I won’t be able to even consider an upgrade until 2014 sometime.  So it’s exciting and a little agonizing (the wait, that is) but ultimately I’m pleased that they aren’t out of reach for me.  In the meantime, I’m paying attention to all the feedback from those who do upgrade right away…by the time I get them, I should be pretty well-versed in everything they can do!

Feel the Noise

Dave walked from window to window, peering out in a futile attempt to find the source of the noise.  “Where is it coming from?” he puzzled, craning his neck out the deck door.  I could hear it too – voices, loud talking, laughter, and frequent, ear-piercing high-pitched shrieks and screams.  Mostly shrieks and screams, to be honest.  It was driving us crazy.

Earlier in the evening, we drowned out the cacophony with a super-loud episode of Orange is the New Black.  (So different from the book, but still awesome.)  But we were done with TV for the night, downshifting into Just Before Bed mode in front of our computers.  And our computers are situated in our dining room, next to an open window right by all the screaming.

Dave hissed, “I can’t see anything.  They aren’t in the backyard, or up on their deck; I even went downstairs and looked through that window to check.”  I listened for a moment, then said, “That’s definitely the little kids next door.  I would recognize their screams anywhere.”

All summer long, we’ve been listening to these kids (probably about 5 and 8 years old, give or take a year) scream and shriek.  They don’t seem to be capable of being outside without screaming all the time, right by our windows.  (If not in the backyard next to our dining room window, then on the sidewalk in front of our house, so we can hear them screaming while we watch TV.)  We never say anything, of course.  Kids will be kids, and these aren’t bad kids…just the noisiest kids we’ve ever heard.

During the day it’s aggravating but not a big deal; I’ve kind of gotten used to the constant shrieking, kind of like hearing a dog bark all day long.  But last night was an anomaly; it was fairly late for little kids, almost 10:30 at this point.  It really sounded like the whole family was having a big, rollicking party in the back yard.  Hence Dave’s amazement that nobody seemed to be out there, at least that he could see.  There weren’t even a bunch of cars in the driveway to indicate extra people at the house.  All he saw was the lights shining brightly from the interior.

We finished up our computering (Candy Crush Saga Level 160, whoo!!) and headed off to our bedroom, on the other end of the house.  By this point, one of my CI batteries had died so I was down to one ear, and I could still hear the shrieks and piercing screams perfectly in our bedroom.  It sounded like they were on OUR deck, or just under our bedroom window.  I checked the rest of the neighboring yards, in case someone else seemed to be having a party, and all the yards were dark.  (Apparently we aren’t the only non-partiers in our neighborhood, heading to bed by 10:45 on a Saturday night.)

I felt bad for Dave, who still has some hearing when he takes off his hearing aid.  Isn’t that a weird thing to say?  Usually I’m bemoaning all that I don’t hear without my CIs (um, that would be everything) and here I am, feeling sorry for Dave because he still has some natural hearing.  All I had to do, though, was slip that other CI off my ear and BOOM…total silence.  It was like someone slapped duct tape over every mouth next door.  (What?  No, I haven’t fantasized about doing that…who, me?!)

After Dave took off his hearing aid, I asked if he could still hear them.  I knew how loud it still was, even on the other end of the house and hearing out of just one ear, so I figured he could.  He claimed it was fine and not bad once he had his hearing aid out.  And I gave thanks that I have this unique ability to go from silence to sound at my choosing.  It’s one of the few benefits of being deaf and having cochlear implants.

This morning, Dave looked bleary-eyed and said he didn’t want to take our usual early AM walk.  “I think I twisted my back somehow, when I was sleeping.  Who knew sleeping could be so dangerous?!  And man, I gotta tell you, those kids were screaming for hours last night.”  He yawned and continued, “But I swear, they weren’t outside.  I think they were actually in their house, in the lower level with the patio door open.  I looked and looked, and never saw anybody outside.”

So it was a mystery, our late-night shriekfest.  Dave is hopeful that, since school is starting later this month, the evening parties (or whatever it was) will die down.  I figure that if they keep it up, one of the other neighbors will call the cops on them.  (It won’t be us, especially since I can turn off the noise if it gets too bad, but the neighbor on the other side of us isn’t so generous.)

Summer is filled with loud noises, especially since we have our windows open.  If it isn’t screaming kids, then it’s lawn equipment, motorcycles, train whistles – you name it.  I’m glad that I’m not forced to listen to this noise pollution if I don’t want to.

After we finished breakfast today, I heard someone start up a loud, whining piece of equipment outside.  It sounded like a leaf/grass blower; I especially hate those.  I smiled at Dave and said, “Looks like this is a good time to take my shower.”  And I slipped off my CIs and went happily into the silence.

The County Fair

Dave and I were out and about earlier this week, and I saw the county fair was all set up.  I knew it was usually the last week of July, but had kind of forgotten about it; the last few years, it has been scorchingly hot during fair week and we stopped going.  I hadn’t been since before I went deaf.

It’s been unseasonably cool the past few days (exactly the kind of weather I like) so on Thursday morning I suggested to Dave that we head over to the fair.  We aren’t usually spur-of-the-moment people, so I kind of had to talk him into it:  The weather was great; we weren’t doing anything else that day; it was a pretty cheap way to get a few hours of entertainment; and, if nothing else, we’d get some exercise.

As we walked around, I kept pointing out things we’d done with the kids in years past.  “There’s where Paige milked the fake cow!”  “Remember the year Eric was in full goth regalia and the people at that Christian booth gave him a Jesus comic book?”  “There’s where Paige got a stagecoach ride!”  etc. etc.

This was the first time we’d ever gone to the county fair without the kids.  Actually, I had never gone to the county fair at ALL until I met Dave.  It was just not something my family ever did.  We weren’t in 4-H (I never knew of any kids in 4-H, to be honest) and we lived smack dab in the suburbs, nowhere near farms.  I didn’t know anyone that ever went to the fair, showed animals, or even entered a pie into the baking contest.

It was a perfect day for walking around; sunny and just a little bit too warm for me, but not so hot that I wanted to leave.  We skipped the carnival rides and fair food, choosing instead to visit the animals, exhibits and entries into the various competitions.  Dave explained how some of the older farm equipment was used; he knew every tractor and planter on display.  (I just asked him, “What was that thing called?  A seed spreader?” and he laughed and laughed, then told me it was called a planter.  Who knew?!)

We spent a lot of time with the goats, Dave’s favorite animal.  If they were near the edge of the pen, not sleeping or busy eating in a corner, they got their ears and neck rubbed while Dave crooned to them.  I almost had more fun watching him with the goats than the goats themselves.

When we stopped in to see the chickens, roosters, ducks, turkey, geese and rabbits, I seriously thought there were little kids in there imitating roosters.  It was happening so often, though, that I started to doubt myself…and sure enough, I happened to be looking right at a rooster when he started crowing.  It was the real thing!  Obviously I don’t hear a lot of roosters crowing here in the suburbs of Chicago, so I got a big kick out of that.

After we’d seen everything there was to see, we realized it was the perfect time to head over and watch the pig races, something we’d done in the past with the kids and really enjoyed.  The show was smaller than we remembered, but still a lot of fun.  We were in the middle of the bleachers and the whole area was packed; both sets of bleachers were full and the area around the race track was packed three-deep with people.

I felt some kicking and nudging on my back; I kind of turned to see what was going on, but couldn’t tell without completely turning around in my seat.  I decided to ignore it.  Just before the show ended, though, I felt a sharp tug on my hair, near one of my CI magnets.  I resisted the urge to whip around, figuring it was probably a toddler or baby behind me.  Sure enough, the show ended and people started to get up and leave…and there was a lady with a baby girl, probably six or seven months old, sitting behind me.

We were waiting for the bleachers to clear out since we were in the middle, and Dave asked me how things sounded since this was my first time at the fair with my cochlear implants.  I thought about it, then said, “I couldn’t understand anything the guy (at the pig races) was saying; between the microphone and loud volume, I got maybe one word here and there.  In that aspect, the CIs were pretty much just like my hearing aids used to be.”  Even with lip reading, I couldn’t really catch what the guy said.  He was talking too fast, there was music playing; it was all just loud noise.

Then I told Dave about the yank on my hair.  He was flabbergasted until I explained it was a baby; I had suspected by the way the hair tug felt (it brought back memories of my own kids pulling my hair).  I realized, as I was telling him the story, that she was probably attracted by the colorful magnets on the back of my head.  I have bright blue color caps on the magnets and they sit pretty much on top of my hair, so they probably attracted her attention.  I’m glad all she got was hair when she grabbed; having my CI fly off my ear would’ve gotten a whole different reaction from me!

Dealing With Tinnitus

One thing I haven’t talked about here in a long time is tinnitus.  I’ve always had tinnitus in varying degrees; it ramped up quite a bit when I lost all the hearing in my right ear in 1993, and then settled down again after a while.  Usually it would go away when I put my hearing aids on.  My brain seems to just go a little crazy when there’s no sound coming in, so it likes to make it up, I guess.

If I had tinnitus when I was wearing my hearing aids, then it usually signaled an impending illness or it was a side effect of stress.  I’ve never had tinnitus as a result of something I ate or drank (caffeine, for example) or from medication.  All the advice floating around on the internet regarding changing your diet to eliminate tinnitus was useless to me.  If I was sick, or about to get sick, I got tinnitus and nothing stopped it except becoming healthy again.  If I was stressed out, I could usually count on the tinnitus fading away once I introduced sound via my hearing aids.  At night, or any other time I didn’t wear my hearing aids, I had tinnitus again.  (Sometimes I could keep a fan running at night and the white noise would keep the tinnitus at bay, since I still had some natural hearing before 2008.)

If you’ve never had tinnitus (ringing or sounds in the ear) then it is really hard to describe.  You definitely hear the sounds, but you can tell they aren’t coming from an external source.  It always sounds different to me – sometimes it’s a low hum, sometimes chirps and beeps, and I’ve also had tinnitus that sounded musical.  It roars, it clicks; some days it’s like Morse code, some days it’s like a train rushing through a tunnel.

Whenever I imagined being deaf, I always imagined dead silence.  Hearing nothing.  Just a big void, if you will.  When I actually lost all of my hearing, I was horrified to have sound replaced by tinnitus.  It was loud and constant.  There was no way to make it go away, because there was no way for me to hear.  I couldn’t introduce sound like I used to.

If I dwelled on it too long, it would’ve made me truly crazy.  I mean, I had noise in my head all day and night long; the only time I got relief was when I was sleeping.  For me, being deaf meant being locked into a prison of constant, hellish internal sound.

Since I knew there was nothing I could do about it, I tried to embrace it as much as I could.  I took comfort in the fact that at least it gave me the semblance of hearing something.  It wasn’t like someone just flipped a switch and my world suddenly went quiet.  Knowing I was at the mercy of this noise, I just did my best not to fight it and, when I could, to find humor in some of the crazy sounds tumbling around in my head.

In those early days, it was just TINNITUS, in the middle of my head.  I couldn’t have told you which ear it was coming from; it just was there, everywhere, not one side or the other.  Now when I get tinnitus (very rarely), it’s easy to pinpoint which ear it’s coming from.  I have it a little bit as I’m typing right now; my CI processors are off while my wet hair air-dries.  I have a very low, constant hum in my left ear, and my right ear has a high pitched whine that sometimes turns into chirps and clicks.

The difference now is that I know once my hair is dry, I’ll put on my CIs and the tinnitus will melt away.  I’ll hear the sounds of my environment and not the sounds in my head.

Getting cochlear implants completely took away my tinnitus.  I had tinnitus after surgery (sometimes very VERY loud, like a roaring train) but once I was activated…poof, it was gone.  The first time the house was quiet and I was wearing my CIs, sitting there in actual silence, I actually got teary-eyed from relief.  It was so nice just to hear nothing at all.

Now I hear silence all the time.  If it’s quiet and I have my CIs on, there’s no tinnitus.  If I have my CIs off, I usually don’t have tinnitus.  It might sneak in, very quietly, but not enough to bother me and definitely nothing like what I used to experience.  If it does ramp up and get crazy, then I know I’m either stressed out or getting sick, just like before.

If you suffer from tinnitus, I know how miserable it is.  Believe me.  For me, the only cure has been sound…either through a hearing aid or cochlear implant.

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!)

Talking to Strangers

As of yesterday, Dave’s been on his Hep C treatment for two months.  For the past two months, he’s been making the trip to the VA hospital (about 45 minutes away by car) to get his blood drawn, check in with Mita (his nurse practitioner) and pick up his meds for the next two weeks.

We have the routine down pat:  Leave the house around 7:15 am, get to the hospital around 8:00 and go straight to the lab.  Pull a number and wait until your number is called.  Get your blood drawn (never a problem for Dave, whose veins are a phlebotomist’s dream) and then find a way to kill some time until the 9:00 appointment with Mita.

When we got up to the 13th floor yesterday, Mr. S was already in the waiting area outside Mita’s office.  He’s very soft spoken, with just a touch of an accent, so I make sure to read his lips carefully when we chat.  It takes a few minutes of talking with him to get used to the volume of his voice and the cadence of his speech, and then it gets easier for me to understand.  Dave still has a hard time hearing and understanding him; he will usually sit very close to Mr. S and lean in when he talks to hear him better.  (Mr. S knows we both have hearing loss; hopefully he realizes that’s why Dave always leans toward him when he talks.)

I wasn’t feeling well when Dave had his six week visit so I didn’t go with (the only appointment I’ve missed so far) but Dave had filled me in on how Mr. S was doing.  (Apparently they lowered his Interferon dosage a second time.)  I asked Dave how his viral count was coming along and he said he didn’t even think to ask.  So I made sure to ask yesterday – and Mr. S has cleared the virus!  (I think he said he cleared it at the six week point.)  This is awesome news – he is on his second round of treatment because the first treatment didn’t work.  It gave us even more hope that Dave will get good news when we get his next viral load count!

Mita called us back to an exam room and another doctor was there as well.  I got a little lost amongst the introductions and wasn’t quite sure why she was there; I assumed she was visiting or maybe in training or something (I’m used to that at my audiologist’s office) but Dave told me later that she’s a new attending for the GI/liver department.  She spent quite a while talking with both of us, and Dave explained his history as far as the leukemia and bone marrow transplant that he had in 1993.  She examined him and then said his blood work looked good; it showed that he might be a little anemic (but nothing worrisome) and his platelets were good too.  Because everything has been stable for him, they kept his medication dosages the same and…drum roll, please…he gets to wait four weeks before his next appointment!

I did ask the attending if this eight week viral load count is the ‘magic number’ and she said it’s actually the 12 week count.  I was under the impression that if his number was under 100 at eight weeks, he’d have 28 weeks of treatment.  The attending made it sound like the 12 week number would be the determining factor, and then she said 24 weeks of treatment (instead of 28).  So now I’m a little confused; I know I heard Mita correctly when we were in the classes but I guess we’ll find out for sure when Dave has his July 3 (12 week) appointment.  Either way, the viral load number wasn’t back yet because the in-house lab doesn’t process that test; they have to send it to an outside lab and it usually takes five to seven days to get the results.  We’ll know more next week.

From there, we went down to the outpatient pharmacy to pick up Dave’s meds.  His name wasn’t showing on the board yet so we went out for a walk to kill some time.  When we came back, his name was listed and we knew his meds were ready so he got in line and I sat down in the waiting room.  After a few minutes, I looked up and saw that Dave was talking to our neighbor.  It was such a weird coincidence, running into him at the VA!  After he turned away from Dave, he caught my eye and called across the room to me.  I asked how he was doing and I could swear he said he’d had a stroke a couple weeks ago (I still don’t know if I heard him correctly); I got up to move closer to him so we could talk without shouting across the room.  He said he was doing better and that his daughter was with him; I turned and saw her sitting behind me so I greeted her as well.  (She babysat my kids a couple of times back in the late 90s and I haven’t really seen her since then – I didn’t even recognize her all grown up!)

We got on the subject of our deck (he was complimenting the work Dave did on the stain) and I was talking about how much work it turned out to be.  A man in a wheelchair nearby chimed in and said that he used to seal and stain decks for a living (and that all the women said their husbands called him to do it after they did it one time, saying they would never do it again…I can believe that).

After our neighbor and his daughter left, I sat down in the chair she vacated which was next to the fellow in the wheelchair.  He turned to me and started talking some more, adding, “I’ll talk to anybody!” with a smile.  I told him that I had a hearing loss and used to never make casual conversation with people I didn’t know, in case I might have trouble understanding them.  He proceeded to tell me a story about how he dated a girl in high school who was deaf in one ear; when they went for walks, she always tried to place him on her ‘good’ side and he resisted until she finally explained why.  I had such a nice time chatting with this man while I waited for Dave; at one point he asked me which was my ‘good’ side and I explained that I had finally lost all of my hearing five years ago and got cochlear implants.  I finished with, “Now both sides are my good side!”

I always had a rule in waiting rooms and other situations where I was sitting or standing with a bunch of people I didn’t know:  Don’t make eye contact.  If you avoid looking people in the eye, they generally don’t try to start a conversation with you.  It was always my biggest nightmare; a well-meaning, friendly person would make an off-hand comment or try to start a conversation with me and I’d be stuck smiling and doing the Deaf Nod, not understanding a word they said and hoping they weren’t asking me questions (or that I was responding inappropriately).

It’s taken nearly five years but I’m finally starting to shed this long-held habit of mine.  I started testing the waters when Dave was with me, so if I missed things he could fill me in.  If we were in a store (or watching a demonstration, like at the ReStore a few months back) I would make eye contact and talk to the employees or the product reps.  This was my first foray into having a casual conversation when Dave wasn’t there to rescue me.

Later that afternoon, we stopped in a Goodwill store and when we were checking out, the (very friendly) cashier said, pretty much out of nowhere, “I know five words in sign language!”  I’m still not sure what prompted her to tell us – if she saw Dave’s hearing aid, maybe.  Back in the old days, I would have just smiled at her and not said much of anything in response.  This time, I told her that I had gone deaf a few years ago and never really learned sign language, so she probably knew more than I did.  We got a good laugh out of that, and I asked where she was taking her classes (because I do still want to take a class if it’s local and affordable).  Turns out she’s a college student so she’s taking it through the community college, but we had a good time sharing the few signs we both know (Dave got in the act too, since he knew more than either of us).

I know it doesn’t sound like much to most people, but for me it is really eye-opening to have these fun, casual conversations with people I don’t know.  It’s helping me overcome some of my shyness, and giving me confidence as far as my ability to make small talk (something I’ve always been very bad at).  Just being able to look people in the eye and not be nervous about them saying something to me is very freeing.

We aren’t able to make it to the Portland Hearing Loss Association of America (HLAA) convention this month, but I can’t wait for the next convention we can get to – it will be awesome to actually talk to the vendors in the Exhibit Hall without being terrified!

Adventures in Deafness

A few days ago I was getting ready for bed.  Dave had just lain down and I was in the process of taking off my cochlear implant processors, removing the batteries and putting them on the battery charger before I put the processors in our Dry & Store unit.  I was turned away from him but out of the corner of my eye, I saw him jump up from the bed.  He let out a few choice curse words.  Then I heard the buzzing from the bed shaker attached to the AlertMaster.

“What the heck?  Did someone ring our doorbell?”  I left one of my CIs on and went to look out the window.  Dave had already gone to the door to check.  There was nobody there and nobody that we could see in the vicinity of our house.

“Maybe it was kids screwing around, since we put that sign by the doorbell?”  It was just after 10:30 pm and the sign instructed people to use the AlertMaster doorbell after 10:30…maybe we had some pranksters in our neighborhood.  I went back to the room and checked the base unit; there was no red light flashing in the area marked ‘Doorbell’ so I felt pretty confident that nobody had actually rung the bell.

I finished with my CIs, got into bed and Dave joined me a few seconds later.  Then I felt it again.  Pulse Pulse … BZZZZZZZZZ.  What the hell?!  We checked the base unit and, again, no lights were flashing.  Dave turned off the alarm and things stayed quiet after that.

The next night, the same thing happened when Dave got into bed.  I was already in bed and ‘offline’ so I was reading his lips as he explained that he thought something was being triggered by him sitting/lying on the mattress near where the bed shaker was situated.  He moved some things around and thankfully we haven’t had any more unexpected ‘alarms.’

Then yesterday morning, my alarm went off.  This is the Sonic Alert alarm clock that we regularly use when we need to be up early.  The thing is, we didn’t need to be awake early yesterday.  I never set the alarm.

I was sleeping HARD when the alarm went off, so I was really discombobulated.  I looked around in confusion for a few minutes, then grabbed the alarm clock and slid it to the ‘Off’ notch.  It was 6 am and Dave was already up, so I walked, deaf and sleepy, into the living room where he was on his computer.

“Hey hon, do we need to be up early today – did I forget something?”

Dave jumped out of his chair; I had scared the crap out of him.  (He told me later that at first he thought he was hearing the wind outside; maybe I wasn’t talking as loud as I thought I was?!)

Now we were both confused:  Dave because I was wandering around half-awake at 6 am, an hour which usually finds me sound asleep; me because an alarm that had clearly been intentionally set for 6 am had gone off and I couldn’t figure out why.

After we consulted and agreed that there was no good reason for me to be awake (Dave was awake to take his 6 am medicine) I went back to bed.  When I woke up and could think a bit more clearly, I was even more confused.  This is an alarm clock with an indicator on the side that you slide up to either Buzz, Vib (short for Vibrate) or Vib/Buzz.  Buzz means there’s an audible alarm, and that’s a very delicate way of saying it.  It’s more like “Piercing Banshee Wail” than “Buzz.”  So you can choose to have the audible alarm only, vibrate/bed shaking only, or both.  (I don’t bother with the Banshee Wail; it doesn’t wake me up, but it would definitely wake up the rest of the neighborhood!)

So it’s not possible that this alarm was set by, say, a cat paw brushing against it.  You have to grasp the thingy and slide it up to the specific setting you want.  And Dave has no clue how to work this alarm clock, so I know he didn’t set it.  Obviously I was the one who did it, but why?  And when?  I have absolutely no memory of turning the alarm on before bed.  Did I do it in my sleep?  Was I on autopilot and just set the alarm before bed without evening thinking about it?  (WHY??  I almost never use the alarm unless I have to be up extremely early.)

All was well this morning, but I have to admit I’m a little jumpy after so many days of random alarms going off.  I’ll sign this,

“Sleepless in Chicago”

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