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.
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.
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!)
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”
We’ve been watching the news out of Oklahoma with heavy hearts – the images of the destruction caused by the tornado are almost impossible to comprehend. I can’t help imagining how scared the kids in those elementary schools must have been, and how absolutely terrified their parents must have been as they waited to find out if they were okay. My heart goes out to everyone who lost property, suffered injuries or worse, who had to endure the storm not knowing whether they would survive.
Here in Illinois, we get some wild weather at times but mostly in the form of thunderstorms. We’ve never had a tornado in our town; we had that derecho last summer which was scary and knocked out the power for three days, and I remember one instance when Eric was a baby (in the summer of 1990) when there was a bad tornado not that far from here.
We have a lower level with a full bath, so I imagine that’s where we’d go if a storm was in our path. I worry about the cats, of course, because only one of them is tame enough to catch and put in a carrier; the other three we would have to try to herd down into the lower level with us and then pray for their safety. But if a tornado blew through our neighborhood in the middle of the night, let’s be serious: we would stay asleep until it lifted us out of our beds. Well, Dave might hear it, hopefully in time for us to move to safety. But we would never hear our town’s tornado siren; we are lucky to hear it when we’re awake and have our hearing instruments on!
I’ve been working toward making things a little more safe for us at night, when I have my cochlear implant processors off (and I’m completely deaf) and Dave has his hearing aid off (and he’s got a severe to profound hearing loss). Previously, the only alerting device we had in our bedroom was my Sonic Alert alarm clock. It has a vibrating disc connected to it, which you slip between your mattress and box spring (or under your pillow, if you really want to scare the bejesus out of yourself in the morning). It will vibrate the bed when the alarm goes off, and it will also alert you to the phone if you have the phone connected as well. We don’t have a phone in the bedroom (and our phone service is through our cable) so we can’t use it for that. At least we have a way to wake up on time!
I knew we could do better, though. There are all kinds of systems out there for the deaf and hard of hearing which will alert you to all manner of things: doorbell, baby crying, smoke detector, etc. We have a smoke detector (one of three) right outside our bedroom door, but would it wake us up at night if there was a fire? Hell no! Well…again, it might wake Dave up since he has some hearing left. But it definitely wouldn’t wake me up. Some fire departments give out smoke detectors with a strobe light for the deaf/hard of hearing. After exhaustive research, I couldn’t find one in our area and once I realized that the only alerting mechanism was a strobe light, I knew it wouldn’t help me anyway. It might help if I happened to be awake and looking in the general area of the smoke detector when it went off, but otherwise it would never wake me up.
I started looking into these all-in-one systems and just about fell over from sticker shock. They range in price from about $190 up to many hundreds of dollars. I guess they assume that everyone with a hearing loss also has a lot of money! Yes, we want to be safe but we also have to be able to afford the equipment.
There’s a place in our state (Illinois Assistive Technology Program) that will loan, for free, all kinds of equipment to people with various disabilities, hearing loss included. However, the loan is only for five weeks and then you have to return it. It’s a “try before you buy” kind of thing. It’s awesome if you have a short term need, or are really planning to spend big bucks on something and want to be sure it will be helpful before you spend the money. But it’s obviously not a long-term solution.
I decided to fall back on my main avenue for items I can’t afford at full price: eBay. I searched for three different popular, recommended alerting systems to see if any were available at an affordable price. I lucked out in my search for the AlertMaster AM6000 unit. It’s normally sold for $180 and I was able to get it for $19.95 on eBay. It comes with a wireless doorbell and a bed shaker along with the base unit. It also functions as an alarm clock.
You can have the system alert you to things like a baby crying, a smoke alarm (or other audible alarm that continues for at least 12 seconds), even a motion detector. The problem is, all of these things are separate transmitters that cost about $50 each. You could easily spend more than $400 on the base unit, all of the transmitters and a pager that you can wear in order to be notified all around your home.
Our main concerns were the smoke detector and the doorbell. I figured the doorbell alert came with the base unit, so all I’d have to do is save for the audio alarm transmitter (for the smoke detector). After we took a look at the unit, though, I realized I had been imagining that it would somehow alert us to the doorbell we already have. We can hear the doorbell just fine during the day, but if someone rings the bell at night (and it has happened before) then we have no idea. This unit, though, gives you a whole new wireless doorbell that transmits to the base unit. When someone rings that doorbell, it will shake your bed and/or turn a bedside light on and off. That doesn’t help us during the day – if we replaced our current doorbell with the new one, we’d never hear our doorbell ringing! Unless we happened to be lying in bed in the middle of the day, we’d never know there was someone at the door.
We puzzled over this for a while, and then I got the bright idea to have the audio alarm situated between our doorbell chime (in the hallway, by the smoke detector) and the smoke detector. I figured it would alert us to both the sound of our regular doorbell and the sound of the smoke detector.
We set the base unit aside while I went back to eBay, searching for an audio alarm transmitter for a decent price. Just by luck, I found someone selling a “Doorbell Notifier” that had the same item number as the audio alarm I needed. I had a suspicion they didn’t really know what they were selling. But it was only $9.95 with no bids, so I put in a bid and crossed my fingers. A few days later, I won the auction and the audio alarm arrived quickly in the mail. I opened it up and yep…it was the exact transmitter we needed!
We started testing it out and it would just NOT notify us when the doorbell rang. We could see lights flashing on the transmitter so we assumed it wasn’t defective, but we were really puzzled. Finally we decided to try it with the smoke detector and see if it detected that sound. Sure enough, our bed started shaking and the light on the base unit flashed. I took another look at the manual and noticed it said it would alert for any sound that lasted consistently for 12 seconds or more. It doesn’t sound like much, but 12 seconds is actually a long time for a doorbell – ours rings just for a couple of seconds. There was no way it would ring long enough to set off this transmitter.
Dave finally suggested that we put the new doorbell out near the original doorbell, with a sign. I didn’t want to say something like, “Deaf occupants – please use this doorbell at night” because that would be like saying, “Deaf occupants who can’t hear you, so go ahead and rob us blind while we sleep!” Instead I just made a small sign: “Please use this doorbell after 10:30 p.m.” If I saw something like that, I would assume there was a baby or small child inside and it was a quieter doorbell (or something along those lines). In any case, the chances of this doorbell being used are pretty slim, but at least we have it out there so the police won’t break down our door if they come calling again at 2 a.m. (Long story – a misunderstanding regarding my daughter Paige, but it was definitely not an experience we want to repeat since they were NOT happy that it took us so long to answer the door. Our now-deceased dog was the one who finally alerted us.)
I was thinking we did a pretty good job of securing our overnight safety at a reasonable price, but now I’m wondering if we should look into a storm warning system. On the one hand, we get lots of weather alerts in the middle of the night for thunderstorms and I definitely wouldn’t want to be woken up for those. On the other hand, if we have a tornado in the area, I would prefer to know before it bears down on us while we sleep. Looks like I have a bit more research to do!
I started working the spring/summer after I turned 16, in 1981. My job search pretty much consisted of scanning the want ads in the paper, a process of elimination more than anything – what could I do where my hearing loss wouldn’t cause a problem? Right away I tossed out any kind of job with heavy phone work – answering phones at a pizza place, being a receptionist, telemarketing. Besides needing an amplifier to hear on the phone (and amplified phones were not that common in 1981), I have a phone phobia…something that I know isn’t limited to people with hearing loss, since I know of many people with fine hearing that hate the phone as much as I do. I also skipped any kind of waitressing job, because I didn’t think I could hear well enough to take accurate orders in a loud restaurant.
My first job was working at Baskin-Robbins, and I found it not through the paper but through one of my brother’s friends who worked there. He knew they were hiring and gave me the number to call. My friend called for me; she had a wonderful, relaxed manner on the phone and used to do this for me quite a lot, bless her heart. Thanks to her I got the job. (My phone phobia extends even to ads that require a phone inquiry; although I will swallow my fear and do it on occasion, I much prefer walking in to drop off an application or applying online.)
Since 1981, I’ve also worked as a cashier, keypunch operator, floating help in the office of a local school district (data entry, filing, Xeroxing, that kind of thing), file clerk, word processing operator (on a Wang word processor…before computers came along), and administrative assistant to a Human Resources manager.
I got the cashier job because my boyfriend’s mom was the supervisor in charge of cashiers; she just hired me without even really bothering to interview me. I stayed there for about a year and a half (half a year while I was also working at the school district).
I spent two years doing the keypunch/floating office help thing at the school district; I got that job because my Office Machines teacher recommended me when they called her looking for a student that did well on the keypunch machine. They actually called me and offered me the job; I didn’t even know it existed!
I worked for 10 years doing the file clerk/word processing job at McMaster-Carr Supply. I found out about that company through one of the secretaries at the school district, when my job there was coming to an end. Her daughter worked at McM and she kept telling me I should apply. I applied and kept calling about my application until I finally got an interview, after a couple months of persistence.
I left McM after Paige was born, and was a stay at home mom for a couple of years. Then my (now ex) husband and I separated and I needed to find full-time work. I found the admin assistant job in the paper; that’s when I applied to be a document clerk (no phone!) and the HR manager convinced me to be her assistant instead. I stayed for five years until they eliminated my position and laid me off in 2001. That job also solidified my determination to never get a phone-heavy job again; all the phone work traumatized me and left me stressed out and sick all the time.
So basically, I tend to stay on for a long time at my jobs (mostly because I hate job hunting) and I tend to find out about them in weird ways, although I always looked through the paper when I was job hunting. It’s just that it never really paid off; only one of the jobs I’ve had in my life came from an ad in the paper.
I haven’t really looked for a job since 1996, which was when I found my last job. After I was laid off, we ended up taking the candle business full time in May 2001 and it took off in a huge way. That was the best – working from home (although we worked constantly, night and day), no phone work at all, being creative and doing something I enjoyed….all while being here for the kids while they were growing up.
Now that the business has slowed down so drastically, I’ve started looking around again for some very part-time work to make a little extra money. But I’ve discovered that job hunting the way I used to is a thing of the past. It’s all online now, and I’m pretty much clueless.
Gone are the days of just scanning everything to see what might be a possibility. Now you need to focus on a career or specific occupation, unless you want to page through thousands of various jobs all across the country. For someone like me, with no college degree and no specific occupation, this is really difficult. I can search for things I know I’ve done in the past, but I’m such a dinosaur that many of those jobs don’t exist anymore. Nobody seems to hire file clerks or word processing operators, much less keypunch operators. (ha ha…even if the machines still existed, I wouldn’t know how to use them!)
Since I know I want very part time hours, probably no more than 15 per week, the best I can do is use part-time as a keyword search. Even that is not a lot of help, but at least it’s something. And now many jobs I know I’m perfectly capable of doing require a degree. When I first entered the job market, you could easily start low in a company and work your way up with just a high school diploma and a high level of intelligence. (Hello, thank you, that is me!)
So I scan the ads, reject the idea of most of them (many things, like data entry, require you to also cover for the receptionist like I did at my last job…NEVER AGAIN OHMYGAWD) and keep on looking. Why can’t it be like it is in the books I read? In one, this nice lady (who loves to cook) loses her husband to an unexpected heart attack. A bunch of different single guys on her block then approach her to see if she’ll make them dinner for a weekly fee. (Come on, really?!) In another, a lady has a traumatic brain injury and can no longer do her high-powered executive job. Eventually she learns how to ski using accommodations through an organization that helps disabled people modify equipment, so they can keep skiing and doing recreational activities they enjoy. And gee, they lose their director and she would be PERFECT for the job! If only real life worked that way.
Anyway, it’s been interesting, job hunting in 2013. I don’t have the in-person social network that I did when I was younger, or I would just put out the word and figure I’d get a job that way. I’ve wracked my brain trying to come up with another home-based business that does not involve selling anything (or buying materials and making things from scratch, like we did with the candles…too expensive in the long run, which is why we tapered the business back). So far I haven’t come up with anything, but the candle business was never planned — it just kind of happened — and it turned out to be great while it lasted. Who knows what might come my way this time?
As of today, Dave is in his third week of treatment and so far he is doing really, really well. He hasn’t had any side effects beyond the ones he noticed right away – the dry eyes/skin, and being tired later in the day as well as the day after he takes his PEG-interferon shot. (In other words, we don’t plan big activities for Thursdays!) He was a little disappointed not to have the weight loss side effect; he was joking with me about a week after his treatment started, saying he was probably going to be the only one who gained weight while doing the treatment! Seriously though, he’s maintaining his weight and eating well. We never had bad eating habits to begin with (fast food once in a blue moon, otherwise we make all our meals from scratch with very, very little processed food involved). Now that the weather is warming up we can start taking our daily walks again. So all in all, this is going much better than we imagined it would!
The next monkey wrench will be when he adds in the third (and final) medication, Victrelis (boceprevir). I suspect this medication tends to give people rashes, because the Nurse Practitioner, Mita, mentioned this more than once. If he adds in the Victrelis and still doesn’t have any bad side effects, we’ll both be very relieved!
We went down to Hines VA hospital on Wednesday for Dave’s first official labs since starting his treatment. He doesn’t have diabetes, but the medication tends to raise blood sugar so Mita wanted him to fast just for this lab so she could check his fasting blood sugar. The lab opens at 7 and we live about 45 minutes away (by car) from the hospital. Dave usually takes his Ribavirin at 6 am, but he has to take it with food (to prevent stomach upset) and that meant he couldn’t take it until after his blood was drawn. We didn’t want to get his meds too far off schedule, so we headed out early in order to get him in right away for his labs. That would give us the chance to have breakfast in the hospital cafeteria so Dave could take his meds, and then he had an appointment with Mita at 9 am.
Dave was up around 4 am, and I slept in (!) until 4:50. Neither of us ate (he was fasting, I was fasting in solidarity with him) and after catching up with things online and getting an eBay order ready to ship, we were out the door a little after 6 am. We made good time and they took him right in when we got to the lab. After that we headed over to the cafeteria to get some much-needed coffee and some breakfast.
After we finished eating, Dave handed me the receipt for safekeeping. I noticed it had a little grid on it, so I took a closer look. Every item we ordered had the calories listed! I thought that was really cool, especially if you were an employee that ate at work every day. It’s so easy to overeat, but if you know ahead of time how many calories you’re consuming, it really helps. Of course, I didn’t notice this until after we were done eating, but it’s good to know for the future. I also belatedly realized that the calories were listed next to every item on the sign they had at the station we ordered from. I didn’t realize that at first; I thought they were numbers you could use to quickly order. (Kind of like when you go to Burger King and order a #5 or whatever.) Wouldn’t that have been hilarious if I ordered my food using the calorie counts?! Luckily I didn’t finish all of my food, and I gave my toast to Dave, or I would’ve ended up eating more calories than him (definitely not something I need to be doing).
Then we proceeded to walk off every single one of those calories…I should’ve worn walking shoes that day! We spent the next hour and a half walking all over the hospital, exploring. It is seriously huge! We even walked past a door ominously marked “Weapon Cleaning Room.” (!)
Mita had Dave’s test results, all except his viral load count, by the time we arrived for his appointment. His blood sugar was what it normally is, and his platelets went down a bit but they were still over 100 so they were still at the low end of normal. His hemoglobin was also lower than his baseline count from last month. She said if those numbers go down further, they might adjust his Ribavirin dosage. That also explains why he’s been more tired than usual. Other than that, his numbers were okay and she didn’t change his meds. We go back in two weeks, on May 8, for the third and final class and also for his next set of labs (not fasting this time). He’ll get his next month’s worth of meds and we’ll learn about Victrelis and its side effects.
I guess the viral load number takes a while to process, so Dave is calling on Monday to find out what it is. Hopefully it will be much lower; this will show that the medicine is working and clearing the Hep C virus. The goal is for the virus to be cleared by week 8…if that happens, his treatment will go on for another 20 weeks and he’ll be done. Much better than being in treatment for almost a year!
After the appointment, we headed down to a health fair the VA had going on in their auditorium. It was very, very loud (as those types of events tend to be) but if you got 15 signatures from various booths, you were entered into a raffle…and Dave was determined to enter! We had a good time going around and talking to everybody. Back in the day I would never try to make small talk with so many people in such a loud environment; I would hang back next to Dave and just listen (and smile).
We stopped at a booth dedicated to both colonoscopies and Hep C treatment. Mita was supposed to be manning the Hep C portion but she was still running her clinic, so we chatted with the colonoscopy fellow. I snagged a book, Colonoscopy for Dummies, and when we got home I left it in the bathroom for some appropriate bathroom reading. Dave came out that evening, waving the book at me (he does not ever, ever want to be reminded of his colonoscopy prep, which he claims was worse than going through chemo). He said, “Why is this in the bathroom??” and without a beat, I said, “Well, it’s the most appropriate place in the house. You can read it and it will scare the shit out of you.” It caught him off guard and I must say, we got a long, much-needed laugh out of that!