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

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 26^th 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

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!

Career Confusion

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!)

Keypunch machine…a blast from the past! I used this in 1982-3.

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?

Three Weeks Down

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!

One of the few photos where Dave is smiling! At his sister Laurie’s house, about 12-13 years ago.

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!

Live and Learn

When I was in high school, I worked as a cashier at Venture for about a year and a half.  Venture was a store similar to K-Mart, your basic discount department store in the Midwest.  This was back in ’81-’82, and the stores didn’t have scanners – we had to key in three sets of numbers for every item (department, item class and price).  On top of that, the cash registers had no numbers on them, just blank white keys, meant to encourage us not to stare at the register but to look at the item and quickly key in the numbers on the price tag.  (That scared me almost as much as the phone!)  If a customer presented a credit card (and that was rare back then; most people used cash or checks) then we had to drag out the knuckle-buster and a credit slip, write all the information down, and call the charge in if it was over $50 (my biggest nightmare).

I got really good at the cash register part, and I was quick and efficient, moving my line along at a brisk pace.  I usually had no problem understanding people, between my speech reading skills and my hearing aid.  Back then, I had a moderate-severe loss in my left ear, and a severe-profound loss in my right ear; I wore one hearing aid, in my right ear.  The biggest issue I really had was with the phone, which had no amplifier.

If I had to call in a charge, I never knew if I would be able to understand the person on the other end.  Many times I had no idea what they were saying, but I got used to the questions they would ask so I would throw that information out there and hope it was what they needed.  At least half the time I couldn’t hear the confirmation number they gave back to me; I’d just write down a bunch of numbers on the slip that sounded close to the noises I was hearing on the phone.

As a side note, I always looked for jobs that involved little to no phone use (I still do that even today).  When I chose a cashier job, it never occurred to me that there would be a phone involved.  I figured I couldn’t ask for a special phone and never bothered to even mention my difficulties to my boss.    Although I kind of enjoyed the cashier aspect of the job, I would probably never go back to another cashier job because of the phones (and now those walkie-talkie things that everyone seems to use – those are a million times worse than the phone for me).  Kind of a bummer because I’m looking for something very part time, just to bring in some extra money now that the business is slow, and it is hard to find something that doesn’t involve a lot of phone use with the skills I have (mostly office work).  Between my phone phobia and my difficulties on the phone, I have no interest in using the phone at work – it stresses me out way, way too much.  I can get by with a captioned phone, but I still would not want a job that had me using the phone very frequently.  It’s going to be a long job search!

Getting back to my job at Venture…one day a lady came in, and I can’t remember now if she was alone or with somebody else, but I think she was alone.  She told me she was deaf.  And that’s all she said:  “I’m deaf.”  It froze me completely.  I was terrified!  I didn’t know sign language, didn’t know anything about deaf people or how to communicate with them.  For all I know, she might have been able to hear a little bit; in my mind, ‘deaf’ meant completely devoid of hearing, no sound getting through at all.

I just smiled and nodded, didn’t say anything, and rang her purchases up.  The whole time, I was slightly panicked, wondering how I was going to tell her the total of her purchases.  I had no idea if she could lip read, I had no idea how to communicate with her at all.  I believe she moved around so she could see the total on the cash register, then she paid and that was that.  But all these years later, I still remember how freaked out I was to have someone tell me they were deaf…even though I also had a hearing loss!

Now that I’m deaf myself (and hearing with CIs), that always stays in the back of my mind if I identify myself as deaf to somebody.  I never, ever just say, “I’m deaf” and leave it at that.  I follow up with, “I read lips and I have cochlear implants.”  Depending on the situation, I might also let them know that I’ll say something if I’m having trouble hearing.  Usually I just like to throw it out there if the situation warrants it, so they don’t think I’m either rude/ditzy/clueless/stupid if I don’t respond appropriately.  I always say that I’m deaf, though, because I am and also because it seems to catch people’s attention more than “I have a hearing loss.”  People tend to be more careful about looking at me when they know I’m reading their lips; if I just say that I have a hearing loss, most of the time they talk with their head turned and/or talk too quietly or too fast.

Hopefully I’ve never elicited the same amount of fear in somebody that I had that day I met my first deaf person.  Part of it was my young age and inexperience; part of it was her lack of information.  Although she didn’t have to tell me anything else, it would have helped to know how to communicate with her since it wasn’t something I had any experience in.  Live and learn!

Kidney Stones and Starters and Ultimatums, Oh My!

Dave and I were watching The Carrie Diaries a week or so ago, and in that episode Carrie told her boyfriend Sebastian that she wanted to break up.  So they did.  Later on, she’s telling her friend about it and is shocked that he didn’t fight for her – he just agreed when she suggested they break up.  I was nodding in agreement with her as she said this, while Dave scoffed in disgust.  I turned to him and paused the show.

“You know, that really is how many girls think.”

He looked stunned, and I continued.  “The guy is supposed to know she doesn’t really mean it.  It’s just like a test for him – will he fight for her and their relationship?  Or will he just agree, which means he didn’t care enough.”

Dave disagreed, vehemently.  “NO.  If she says she wants to break up, she should mean it.  Why would he stay with her if she wants to break up?!”

I narrowed my eyes and challenged him.  “So if we got in a fight over something stupid, and in the heat of the moment I yelled and said I wanted a divorce, you would just DO IT?  You wouldn’t fight for us?”

He shrugged.  “Yeah.  If tell me you want a divorce, then I assume you really want a divorce.  Don’t say it if you don’t mean it.”

I shook my head.  “No, you should know I don’t really mean it and that people say things they don’t mean when they’re angry.  If you told me you wanted a divorce, I would never just accept it.  I would do everything I could to keep our marriage together!”

The show languished on ‘pause’ as we continued, although at this point we were kind of laughing at each other for getting so worked up.  Finally, I smacked Dave on the arm and told him he’s not allowed to ever agree if I tell him I want a divorce.  He grinned and acquiesced.  Luckily, I have long since outgrown my tendency to throw down huge ultimatums in the middle of a fight and, also luckily, we usually don’t fight.  We might have heated discussions, or disagree for a while before coming to a compromise, but it is very, very rare for us to have an actual yelling-at-each-other fight.  Still, it’s good to know that he’s so very literal!

In other news, last night I was playing Words With Friends when I heard Dave call out, “Honey?  Come here!” from the bathroom.  I ran down the hall, hoping he was going to deliver the news I wanted to hear.  He proudly wielded his strainer, which held…a dark gray kidney stone, much MUCH larger than I expected it to be.  I mean, I thought we might actually miss the thing, you know?  This looked like he’d plucked a piece of gravel from the road and tossed it in the strainer just to mess with me.

You know it’s true love when you’re high-fiving your husband and admiring the kidney stone he just passed at 11 pm.

It’s a good thing he passed it on his own, because when he called to make the appointment with Urology they told him the soonest they could get him in was May 20^th!  Lord have mercy.

He kind of sighed this morning and told me, “I feel like I’ve been cheated.  I’ll never really know what the first week of Hep C treatment is supposed to be like…the kidney stone stole the spotlight!”

In one week he has not only started his Hep C treatment, passed a kidney stone and finished my mom’s kitchen (it looks great, mom!) but now our car won’t start [heavy sigh].  We assumed the battery ran down because when we got in the car the morning after his hospital visit, it wouldn’t start.  I figured maybe we didn’t shut one of the doors all the way, since it was so late and we were both really tired.  Dave put the battery charger on and we took our other car over to my mom’s.

But yesterday morning, when he was heading over there to finish up, it still wouldn’t start.  So he spent the morning taking the car apart, trying to figure out what was going on.  I suggested that we have it towed and looked at in a shop.  He looked as if I had just suggested we remove our clothing and do an interpretive dance on the sidewalk.  “No, of course I can fix it.  It just takes so damn long to actually get to the starter on these newer cars!”  He complained about clamps that needed to be removed and I nodded supportively.  I asked if he needed my help.  He made a little snort of laughter and went back to the garage, and I breathed a sigh of relief because, really, I know nothing about cars.

So now we have a new starter ordered and he’s going to pick it up in about a half hour.  After this, it would be helpful if we could get a little break on the crises.  *fingers crossed*