Monthly Archives: May 2013

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”

The Runny Egg Yolk Experiment

“You know, we really should eat this bread today.  I made it a while ago.”  Dave pulled the bread keeper towards him and brandished the loaf in my direction.  There wasn’t much left, maybe one-fourth, but he was right – it had been sitting there for a while.

“French toast?  Um…maybe Toad in the Hole?”

Before he finished speaking, I was waving my hands at him in excitement.  “How did you know I was going to say that?!  Oh my God, I was totally going to suggest that!”  The weird thing is, we’ve never ever had Toad in the Hole for breakfast (or Egg in the Hole, or whatever else it’s called – where you cut a hole out of the middle of a piece of bread, warm some butter in a skillet, then crack an egg into the hole in the bread and let it cook on both sides).  Dave has talked about it before, so I assumed it was something he’s eaten in the past, and I’ve seen my mom make it (and seen it featured on Pioneer Woman’s cooking page).  But I’ve never had it in my life, and it was just so strange that we both happened to be thinking of it this morning.

Turns out that Dave has never made (or eaten) it either, which kind of shocked me.  It just totally seems like the kind of thing he would eat.  So I glanced quickly at Pioneer Woman’s page to make sure we had the right idea, we grabbed the biscuit cutter to cut the holes, and we had enough bread for me to have one slice and Dave to have two.  Then we discussed strategy.

“Now, I want you to cook mine long enough so the yolk isn’t runny.  Just leave it so that it cooks all the way through,” I instructed.  I’ve always been completely grossed out by a runny yolk.  Partly because it just looks like an uncooked egg, which makes me think salmonella.  Partly because the texture thing is just icky…you have this solid section and then a totally liquid section and ewww.  Dave knows this is one of my food quirks so he wasn’t surprised by my request.  He regularly makes fried eggs with runny yolk for himself and he knows if he’s making me an egg, I like it cooked all the way through.

He used the cast iron skillet which can be tricky temperature-wise – it really holds the heat once it gets hot and it’s easy to overcook things if you don’t turn the flame way down.  He started my bread and then cracked in the egg; I added some salt and pepper to the top and also tossed my circle of bread into the pan because I wanted it toasted too.  Dave shook his head at my ‘goofiness’ and then went to flip over my toast circle.  It was already dark brown on the one side, so he flipped my Toad in the Hole and started cursing because he thought it was overcooked.

He turned down the flame and kept cooking until things were starting to get a little smoky.  He was sure he’d burnt the second side (he didn’t) and started offering to make me another one, but I reassured him that it was fine.  It’s kind of like when you make that first pancake and it takes a while to get that groove going between a little too brown/burnt and just right.

So we sat down to eat, and as I cut into the middle of my egg, the yolk started oozing out.  It wasn’t like a gushing river, it was kind of thick, but it was definitely not set.  “Hey look, I have a runny yolk!”  I held up my plate for Dave to see.  I could see the look on his face; he thought I was going to start freaking out, and he was getting ready to apologize and say he’d make me another.  Before he could speak, I added, “I’m kind of excited…I’m going to try it!”

We watch a lot of cooking shows, and at some point almost all of them feature someone cutting into a poached egg and raving about the yolk as it runs all over the food it’s served with.  I’ve seen this enough times that it started to make me curious, wondering if I’ve been missing out on something amazing.  I wasn’t curious enough to deliberately make myself an egg with a runny yolk, but since I’d been accidentally presented with one I decided to make an adventure of it.

So I dipped my toast circle into the yolk, dragged it around and took a bite.  And it was good.  I mean, my eyes weren’t rolling up into my head in ecstasy, but I also wasn’t gagging and regretting my decision to be adventurous.  It was fine and pretty yummy, kind of like having a little gravy or something.  Not a gross, slimy texture the way I imagined it would be.  Not a super strong flavor, either – definitely nothing offensive.  I ate it all, happily, and gave Dave a high five over my “tried something new today” accomplishment.

I’m still a picky eater, but I’m slowly making advances.  On Mother’s Day we were at my mom’s for dinner, and she ordered a few pizzas.  Plain cheese for the kids; for the adults, she got one with half pepperoni and half sausage, and one with fresh spinach, mushrooms, Roma tomatoes and a mixture of mozzarella, Romano and cheddar cheese.  I had one piece from each of the ‘adult’ pizzas on my plate and my brother could not believe I was eating the spinach/mushroom/tomato pizza.  He’d been traumatized by my pickiness on family vacations, having to pull over and wait at Burger King or McDonald’s while they made me a plain hamburger because I wouldn’t eat one with anything other than ketchup.  (Actually, I still eat my hamburgers that way.)  The look on his face when I told him I actually like fresh tomato, spinach and mushrooms on my pizza (as well as onions, green peppers…pretty much anything but anchovies) was priceless!

Safe and Sound

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Surviving Summer

I knew it was going to be really hot today (86 predicted, which means it’ll be at least 90 degrees F) so we did our grocery shopping early, right after the store opened at 9 am.  Unfortunately, most of the town had the same idea and the store was more crowded than I’d ever seen it.  I’m not sure if everyone was shopping in order to beat the heat, like me, or in preparation for a day outside (picnic, barbeque).  As we checked out, the cashier smiled brightly and said, “It’s beautiful today!”  I didn’t want to be rude so I smiled back and agreed with her.  But deep down, in my heart of hearts, what I was really thinking was, Are you kidding?!  I hate this weather!

Yes, I admit it.  Summer is not my favorite season.  It’s not even my second-favorite season.  I know I’m an oddball, and for years I tried to hide it because so many people would react in horror when I said I didn’t like hot summer weather.  Now, though, I let my summer-hating freak flag fly.

Even when I was a kid, I preferred to stay inside (and read).  I was never a big sports/outdoor activities fan; the closest sport-like recreation for me was roller skating…which I did inside.  (Our area of town had no sidewalks and the street was too rough for roller skating, so I spent lots of time at the roller rink.)  I did some swimming and some bike riding, I’d go out and hit tennis balls against the side of the garage (INSIDE the garage, but with the door open so it was sorta outside), and in my teens I did a lot of walking from place to place.  But I was happier to just stay inside and read all day long.

Back then it wasn’t that I didn’t like the hot temperatures.  On the contrary – the only thing summer was good for when I was high school and my 20s was sunbathing.  I’d slather on Hawaiian Tropic oil (no sunscreen – are you kidding?!) and go lay out on a blanket-covered chaise, the kind with the metal frame and the sticky plastic slats.  I’d bring a bottle of water or keep the garden hose sprayer near me and spray off with cool water when I got too warm.  An hour or two of that and I had my tan (I never burned, thanks to my Italian genes) and my dose of summer (and UV radiation) for the day.

I don’t know…maybe it was my youth, maybe it was being skinny (which I was until my mid-30s), maybe it just wasn’t as hot and humid back then as it is now…but now, once the temperature passes 83 degrees it is just miserable for me.  I sweat, for one thing, especially if it’s humid (which is most of the time here in Illinois).  I never used to sweat!  It started a couple of years ago so I suspect it’s hormones, since I’m looking at menopause in the next decade or sooner.  It’s just gross – I hate feeling sticky and having a little pool of sweat in the small of my back or on my neck.

So summer gets treated the same as winter – I stay inside, all the windows shut, with the air conditioning on.  It’s the only way to get through the day in any kind of comfort.  If I have to go outside, I do it very early in the morning.  (We still manage to get our walks in that way.)  I close the blinds to block the relentless sun, which shines into our kitchen and dining room all day long.  We live in a raised ranch, so our living area is technically on the second floor and that makes everything warmer.  (Our lower level, where the candle workshop used to be, stays nice and cool.  Too bad I can’t cook dinner down there!)

I plan meals around the forecasted temperatures, making sure to minimize any use of the stovetop on warmer days.  Our built-in oven doesn’t heat the kitchen up at all, but our five-burner gas stovetop throws off so much heat – it’s like having an indoor bonfire, right at the time of day when the house is already at its warmest.  We use the grill, slow cooker, oven and microwave and save the cooktop for days when the temperature will be 80 degrees or less.  I did find a great way to cook pasta in the summer, by the way:  Boil your (salted) water, throw in the pasta, stir and cover the pot.  Turn off the heat completely.  Check the pasta after 10 minutes and it should be the perfect texture (sometimes I go 11 minutes for thicker pasta).  I cooked pasta this way all last summer and it really helped keep the house from heating up too much!

If I had to rank the seasons from best to worst, I’d say fall, spring, and then summer and winter would be tied.  Seriously.  I like thunderstorms in summer and snow in winter, but I don’t like the extremes in temperature that those seasons bring.  I don’t like driving in the snow, so I only enjoy snow if I can stay safe in my house.  I do like temperatures up to 80 degrees, with low humidity, so every now and then, if we have a mild summer, I can safely say that I enjoyed it.

Otherwise though, I’m that weird person who looks disappointed when the temperature (and humidity) rises; that person who will never say, “What a beautiful day!  Get outside and enjoy it!” when it’s 88 degrees of nonstop sun and no clouds.  I’m the one who silently endures summer and waits patiently for fall, with its pleasant days and crisp mornings and woodsmoke-filled evenings.

Dream Weaver

When I was a kid, I used to have a few recurring dreams.  Usually they were scary; one dominant theme involved going into the basement of a house (not my own basement, though) and dealing with monsters/witches/general scary people.  I learned to kind of train myself to tell it was a dream and wake myself up, because it was really frightening and I could count on having one of these scary dreams at least once a week.

As I’ve gotten older my dreams don’t recur so frequently, but there are a few that I’ve had enough times now that I think Oh, another one of THOSE dreams when I wake up.  Of course, I have the school dreams, on various themes:  Can’t find my locker; can’t find my schedule and don’t remember where my classes are; have to take a test I haven’t studied for.  (On a side note, that happened to me in real life and it was horrible; I used to skip catechism/CCD class alllll the time and then once in a blue moon I would show up.  One of those days happened to be a test day, which was horrifying since I hadn’t been there in probably a month – the classes were once a week.  Ironically, I was the only person in class who passed the test, which just proved to me that it was a waste of time to go and I proceeded to become an official Catholic CCD dropout. )

I have the same dilemma crop up in dreams, in different forms:  I need to be somewhere at a certain time, and everything conspires against me so I end up being hours and hours late, no matter how hard I try.  I need to make a phone call and can’t dial the number properly, I need to button a shirt/get dressed/pick out clothes and it takes me hours, whatever.  I just can’t seem to actually get out the door and make it to wherever on time.  (God, that’s a frustrating dream!)

I used to have dreams about my teeth falling out (very, very freaky and scary) but luckily I haven’t had that one in a while.  Another dream I’ve had two or three times is the one where I find extra rooms in my house.  It’s never a house I’ve ever actually lived in, but I kind of love this dream because I walk around just freaking out at all the extra space I suddenly have, and I imagine all the things I can do with this house that’s mine but I never realized how amazing it was.  (Another side note, which was also my FB status for a while:  I got a new (to me) purse and it’s much more spacious than the one I was using. After I found two more inner pockets I didn’t know I had, I told Dave, “This purse is like one of those dreams where you’re in your house and you keep finding rooms that you didn’t know existed!”)

Sometimes I have dreams where I’m driving in a car and suddenly I’m going up a very large hill or bridge, and the car is barely hanging on; it’s like it turns into a rollercoaster.  In one of these dreams, the hill was so steep that I actually fell out and was hanging onto the door so I wouldn’t fall to the ground.  These absolutely terrify me and it’s so unexpected; it’s not like I start out in a car on this massive, horrible rollercoaster-like hill or bridge…it just happens after I’ve been driving for a while, and suddenly I realize the predicament I’m in.  ::shudder::

Another dream I’ve never heard of anyone else having (maybe it’s just me?) is one I have fairly often – I have to put my contact lenses in and suddenly they are huge, like the size of dinner plates, and I’m wondering how the hell they’ll fit in my eyes.  Sometimes they’re all gross and shriveled up, but I still have to wear them.  Usually, though, they are just huge.  But I manage to put them in and wear them without pain – it’s just that I confront them at first and think No freaking way!

One dream I’ve never had is one where I’m flying.  A lot of people mention having this dream and how much fun it is, but if I’ve ever dreamed about flying then I certainly don’t remember it.

As an adult, I don’t really have scary ‘monster/bad guy’ dreams like I did when I was a kid.  Dave, however, always tells me about dreams he has where he’s fighting:  zombies, crazed killers, radioactive spiders, etc.  If I had dreams like that, I’d be afraid to go to sleep!

Maxie watching over Dave while he sleeps

Maxie watching over Dave while he sleeps

He’s Kicking Ass

Yesterday we got the results from Dave’s four week labs, including another viral load count.  The first test, at two weeks, showed no change.  It was actually higher than the last viral load test he had, at the end of January.  I figured his viral load most likely went up between the end of January and the start of his treatment in early April, which is why the test done two weeks into treatment showed a higher number than the January test.

Well, we finally got some GOOD news.  His two week viral count was over 4 million.  His four week count, the one taken last week right before he started Victrelis, was 1.6 million.  !!!!  That’s a huge drop in two weeks; when you consider that Victrelis is supposed to be the new wonder drug that really packs a whollop, it gives us confidence that his next test, at six weeks (with two weeks of Victrelis under his belt) will be amazing.  We’re staying positive and confident here!

I have to confess, I was really worried about him starting this treatment.  There are a lot of horror stories out there, and he had the added unknown of being a leukemia survivor and the recipient of a bone marrow transplant.  Even though his doctors at the VA have all coordinated for his treatment and they were confident that his body could handle it, it still scared me.  I was prepared for him to spend 6 to 11 months basically just sleeping, dealing with side effects, and taking medicine.

So far since he started treatment five weeks ago, he’s painted Mom’s kitchen, replaced the starter and battery on our car, tore out the carpet and put down laminate flooring in our bedroom (good grief, what an improvement!) and he’s currently painting a new shelf/stand for a TV downstairs.  He’s making me feel lazy!

In the interest of full disclosure, he does admit that a big outpouring of physical energy will leave him pretty exhausted for a while afterward.  He mowed the lawn yesterday morning and was crashed out on the couch in the afternoon (and falling asleep by 9:30 that night).  It took him about two days to recover from the long car drive to Michigan, and the same for replacing the flooring in the bedroom.

He does have days where he wakes up and just has no energy.  There’s no rhyme or reason to it – it just happens, and he has to accept that it will be a day when he’s spending most of the day napping.  One of the bigger frustrations for him is that taking a nap doesn’t recharge his batteries the way it used to; he often wakes up feeling just as wiped out as he did when he went to sleep.  So far, though, he hasn’t had a bunch of bad days in a row.  He usually bounces back after a day of downtime.  I can tell just by looking at his eyes if he’s fighting to stay upright or if he’s feeling full of piss and vinegar.

Even though our checkbook wouldn’t agree, it really is a good thing that the business is slower now and he can just check out and relax all day if he needs to.  I’m so glad that he’s in a position to be able to do as his body dictates and sleep when and if it’s required, or go out and do the projects and activities he wants to do.

Even though he’s dealing with random tiredness, there have been positive physical changes.  For about six months before he started treatment for his Hepatitis C, he was getting pains in the area of his liver – pains that were fairly new and starting to bother him.  After he’d been on treatment for three or four weeks, he noticed the pain was completely gone.  That was right after we got the viral load test results that didn’t show any changes.  Instead of being discouraged, he told me that he KNEW good things were happening because that pain was gone.

Since he started Victrelis, he hasn’t had a rash.  He had one day of nausea, the morning after his 10 pm PEG-interferon injection and Victrelis dose; he thinks it was just the combination of both together that was a bit much to handle.  Every now and then he does notice a metallic taste in his mouth, so he’ll reach for hard candy or candied ginger to get rid of it.

We really believe he’ll qualify for the 28 week treatment (versus 48 weeks) so:  Five weeks down, 23 weeks to go!

Maternal Instinct

I don’t remember playing with dolls much as a kid.  Sure, I had Barbies…but mostly so I could dress them in the cool outfits my mom bought for them.  I had a Shirley Temple doll, basically because I idolized her.  I just don’t really remember having baby dolls and playing ‘mommy’ with them.  I never fantasized about having a baby and taking care of it; as I got older, I vacillated from saying I would never have kids (I didn’t want the blood tests I knew I’d have to get if I was pregnant) and saying that I would just adopt (that came from a book I loved as a kid, called The Family Nobody Wanted).

So it was a big surprise when, around age 25 or so, I suddenly really, really wanted a baby.  I wanted to be a mom.  When my oldest, Eric, came along just before my 26th birthday, I was absolutely clueless about babies.  I never babysat, didn’t have young siblings or nieces or nephews that I ever took care of.  I was not the person who would ask to hold your baby.  (In fact, I would inwardly cringe if you handed your baby to me, sure that I was going to make him/her cry.)  None of my friends had babies yet.  But there I was with my very own baby!

My mom has to get the credit for my baby learnin’.  She was there to show me how to burp Eric, how to lay him down for a nap without waking him right back up, how to soothe him.  I still pretty much stayed a nervous wreck until he was a toddler, but my mom helped me take a deep breath and not be so terrified that I was going to break my baby.

I was lucky to grow up with a mom that not only took care of me and looked out for me, but was a great role model and friend as I grew older.  Rather than pulling away from her in my late teens and my 20s, I confided in her often, asking her advice and telling her my goals and dreams.  I borrowed clothes from her too – she was always better dressed than me (even now, at nearly 75, my mom puts me to shame in the clothes department).  It was kind of awesome, like having two closets full of clothes!

Little kids always make me kind of nervous – I have a hard time understanding them, and I just don’t have that laid-back playful personality that meshes well with kids.  I really wasn’t sure what it would be like with my own kids – would I be able to understand them when they were learning to talk?  And it turns out I could understand them just fine.  It makes a big difference when you spend all day, every day with that little person – it was easy for me to know what they wanted even when nobody else could figure out what they were saying.  Unfortunately, that didn’t suddenly make it easy for me to understand all little kids…but at least I could understand the ones that meant the most to me!

I always felt I was too selfish to be a good mother, and I definitely was selfish in many ways.  It kind of drove me crazy when they were little and I had no time to even read a magazine, much less a book, without being interrupted a million times.  I couldn’t go to the bathroom or take a shower in peace.  It irritated me to pass up doing the things that interested me and instead do things with the kids that I found to be a little boring.  But I did it.  I snuck in some ‘me’ time at the beginning and end of each day.  And as the kids grew (and I grew in maturity) it got easier, and I could feel my attitude shifting.  Instead of resenting the things I no longer had time for, I was grateful for the time I got to spend with the kids…no matter what we were doing.

I made lots and lots of mistakes along the way, and hopefully I haven’t doomed my kids to a lifetime of therapy.  I like to think they both know I love them unconditionally and completely and wildly.  I think we have a pretty good time together (although I can slip into Annoying Mom mode now and again).  I hope I’ve set a good example for them the way my (awesome) mother did for me.  I may not have realized early on that I had a maternal instinct, but it was always there…it just needed some time to grow and bloom.

Happy Mother’s Day – to my wonderful, much-loved mother and to all of my awesome mom friends!

Me and mom

Me and mom

Hep C Treatment – Four Weeks

It’s been a month of Hepatitis C treatment for Dave and so far, so good.  We had our final class this morning to learn about the third medicine he just started taking today.  It’s called Victrelis (boceprevir) and he takes four capsules every eight hours.  This class was quite a bit shorter; the side effects are basically the same as for Ribavirin, with the addition of a possible rash or metallic taste in the mouth.

There are two other guys in this group along with Dave, but usually we only see one of the guys, Mr. S (and his wife) when Dave goes for labs every other week.  The other guy lives pretty far away so I believe he gets his labs done at a clinic closer to his house.  We do see him when the guys either have a class or get their next dose of medicine.  So far everyone seems to be tolerating the medicine well, with no major side effects.  Mr. S has had his Pegasys dosage lowered because of low platelets but that’s about it.  So it’s encouraging that everyone is still going strong and hanging in there!

Dave’s numbers are all really good so far – his blood sugar is normal, his platelets went UP (!) and his hemoglobin is holding steady.  All his dosages are staying the same for now.  At this point, he’s now taking all the medications for his treatment; no new ones will be added in.  (Thank God, because it’s already getting confusing keeping track of everything!)

He gets up at 5 am and takes his thyroid pill, since it has to be taken well before he eats.  Then he takes three Ribavirin capsules and four Victrelis capsules at 6 am, with food (something with fat, to help the medicine be absorbed into his system).  Another four Victrelis capsules at 2 pm, again with food that contains fat.  Three Ribavirin capsules at 6 pm (usually right after or during dinner, to take care of the ‘take with food’ requirement).  And finally, four more Victrelis capsules at 10 pm with, you guessed it, a bedtime fat-containing snack.  He was jokingly complaining about the fact that he’ll never lose weight with all this food he has to eat, all day long!  Oh, let’s not forget the PEG-Interferon shot he gives himself every Wednesday night at 10 pm (take it out of the fridge at nine so it can come to room temperature first).

And they aren’t kidding about the timing of all this, and making sure you really take your meds every day.  If you miss even one day of the Victrelis medication, you are withdrawn from treatment and you can’t restart it – you have to wait for a new treatment protocol to come along for the VA, probably in 2015, because this one will no longer work.

Right now there’s been no change in his viral load – he got his first PCR test two weeks into treatment and we got the results last week, since they take a week to be processed.  He got another PCR test today, so we’ll find out next week if there’s been any change yet.  The big one is a month from now, when he gets his eight week test.  If he clears the virus by then, it cuts 20 weeks off his treatment time.  That’s huge!

That pretty much covers everything so far…we just need to see if the Victrelis will bring any nasty side effects with it.  I expect Dave will be feeling pretty tired tomorrow since tonight is his PEG-interferon shot, plus he started the Victrelis today so his body will be adjusting to all this new stuff.  (And he got his second Hep A & B vaccination today – he hates those shots!  Luckily there’s only one more, five months from now.)

On the Road Again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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