Monthly Archives: July 2013

The County Fair

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

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

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

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

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

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

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

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

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

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

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

Dealing With Tinnitus

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

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

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

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

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

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

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

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

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

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

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

Self-Sacrifice | Willpower | Becoming Bionic

My two weeks with regular contact lenses is almost up.  Earlier today, I put my head on Dave’s shoulder and mock-sobbed with relief, “I just ordered bifocal contacts!”  He patted me on the back and said, “You done good, kid.”  As the kids and I know, that is High Praise from Dave…his way of saying, “Holy crap, you did an amazing job!”

I hang my head in shame as I admit that after the first day, I seriously thought, “I can’t do this.  I can’t spend another day wearing these contacts.”  It sucks so bad.  I hate wearing glasses, and here I am, wearing (reading) glasses almost all day long.  I have to wear them to see during just about every activity I engage in, except for watching TV and driving.  At the end of the day, when I finally take the glasses off, I can still feel them on the bridge of my nose.  It’s like phantom pain, except not really pain, just pressure.

I know how whiny and spoiled I sound, but hey, it’s my blog and I’ll whine if I want to.  😉  Wearing regular contacts after being used to bifocal contacts is like going back to Windows 3.1.  But I did it, man.  I’m wearing these suckers for their full two weeks, so I have to suffer until this Friday.  But then I can switch to the one pair of bifocals I’ve been hoarding…by the time I’m done with those, my new shipment of contact lenses will be here.  Huzzah!

In other amazing feats of self-sacrifice, yesterday was National Ice Cream Day.  Did you know that?  I didn’t realize until someone mentioned it on Facebook in the early evening.  I like me some ice cream, but nobody likes ice cream like Dave does.  It was no surprise when he turned to me after dinner and casually said, “Hey, maybe we’ll run out and get some ice cream later on.”  This is kind of a big deal for us because we almost never eat after dinner – we eat early (we’re usually finished by 6 pm) and then don’t eat again until around 10 am the next day.  After some discussion, we decided to use a Culver’s coupon for Concrete Mixers.

Since we don’t do this very often, we didn’t know what flavors they had.  I pulled up the Culver’s website so we could check out our options, and then made the mistake of clicking on the Nutrition tab.  The coupon was for a medium size (buy one, get one free), and the calories in one Concrete Mixer of that size were equal to about half of my entire daily allotment of calories.  If I hadn’t read that, I probably could have eaten the entire thing without a second thought.  Instead, I did some quick math and decided to split it into three servings:  One for last night, and the other two for today (one for me, one for Dave).

So yes, I came home and weighed my Concrete Mixer, took out five ounces and put the rest in the freezer.  How’s that for willpower?  (Well, I know I could have just not had any at all but…it was National Ice Cream Day!)  I got Mint Oreo, and it was really freaking good.

When we went out for the ice cream (custard…we’ll call it the same thing), we realized it had really cooled off.  Yesterday started off fairly pleasant, and then hit ‘hot, humid, disgusting’ levels by early afternoon.  We had the air conditioning on and had pretty much stayed inside all day so we were pleasantly surprised by the cool outside air.  We came home, turned off the A/C and opened the windows.  When we went to bed, though, I had to turn on the overhead fan.  Poor Dave.

This is how it goes in our house lately, thanks to my perimenopause and Dave’s thyroid craziness.  I never used to sweat, ever.  I mean, I could do the Jane Fonda workout and not a bead of sweat would grace my brow.  Now that I’m staring down menopause (not there yet, but I’m almost 49 so it’s on the distant horizon), I sweat.  Especially if it’s humid.  And I’m not used to it, so it grosses me out.  It’s like walking around wearing a damp bathing suit under your clothes, all day long.

One thing that helps is keeping a fan going, blowing cool air on my skin.  But Dave’s crazy thyroid makes him get cold much easier, so while I’m standing in front of a fan, he’s wrapping up in a quilt.  I saw the look on his face when I turned on the bedroom fan before climbing into bed, so I took my side of the sheet and blanket and threw it over him, wrapping him like a burrito.  Poor guy!  His next thyroid test is this Friday.  He’s been feeling less tired, so we think his thyroid level must be coming down, but things still don’t feel ‘right’ just yet.  We’ll know more when his test result comes back next week.

Today, by the way, is the day I had my cochlear implant surgery five years ago.  (Let’s just say that I feel a LOT better right now than I did at this time five years ago.)  I don’t think I’ll ever be able to just go about my business on July 22 without remembering that.  This is the day I became bionic!

Slowly Becoming Obsolete

Not much has been happening here, other than being slammed with a wave of heat and humidity, and praying for no power outages whenever a storm rolls through.  Having the car in the shop for three days kept us homebound (not that I wanted to be out and about in the heat anyway).  Our biggest entertainment was waiting for the phone to ring, so we could find out the damage on the car repairs.  (More than I wanted to pay, but less than it could’ve been, so…yay?)

I did notice, when I was looking at the calendar earlier this week, that my five year cochlear implant surgery anniversary is coming up (next week on July 22).  It doesn’t seem like it’s been that long…and then other times it kind of feels like I’ve had CIs forever.  What really illustrates the passage of time, though, is new technology.

When I got activated in August of 2008, I got the newest Advanced Bionics processor on the market at the time, the Harmony.  There were people still upgrading from earlier models at that point, and it was kind of exciting to have this cutting edge tech sitting on my ears.  Since then, there have been some new software strategies released (and I did get ClearVoice last year, which I love) as well as the Neptune, which is their waterproof, off-the-ear processor.

From time to time I mentor people who are considering getting an AB cochlear implant; since I got both ears done at once, I often correspond with people who are considering that option.  But now I’ve noticed that I’m not as useful when it comes to the hardware.  I can definitely talk about what it was like to have both ears operated on and activated, but I have no idea what it’s like to wear a Neptune, or what all the accessories are.

On top of that, Advanced Bionics has a new behind-the-ear processor coming out soon, called the Naida CI Q70.  Anyone that’s activated at this point will get that instead of the Harmony (I believe they get a voucher that they can trade in for the new BTE when it’s officially available).  Which is awesome, of course – but that makes me kind of obsolete.  Already!

I’m hoping to upgrade to the Naida Q70, depending on the cost and my insurance coverage, next year sometime.  Still, though, it’s strange to think that my newfangled bionic ears are being passed by already.  Of course, they are still amazing and work just fine – it’s just not as easy to upgrade bionic ears to the latest and greatest as it is to upgrade your phone or your computer.

I’m only five years into this…kind of makes me wonder what lies ahead in the next ten or fifteen years, you know?  Hopefully technology will just keep advancing by leaps and bounds.  What I’m really waiting for isn’t even for me, but for my friends with degenerative vision diseases and conditions…I really want to see them get implants to help with vision the way cochlear implants help with hearing.

In other news, Dave got his very first cell phone…is he possibly the last person around to get a cell phone?  He’s resisted with all his might, and then something just snapped and now he’s a little obsessed.  It’s kind of fun to see him playing with his new toy, even if he won’t give his phone number out to anybody.  (He’s got a pay-as-you-go plan and doesn’t want to use his minutes for anything!)

The Feast

There was one constant in the summers of my childhood, a family tradition that carried through until my very late teens.  Every year, in mid-July, we made the trek to Melrose Park for the Italian Feast.  We actually just called it The Feast; everyone knew what we meant.  I only just recently found out that the full name of this festival is the Feast of Our Lady of Mount Carmel, in its 120th year in 2013.

You know how you can take a kid on some amazing outing and they come home and just remember things like the water fountains or the revolving doors in the building?  That might be how my memories of the Feast are now, since it’s been over 20 years since I’ve gone.  But for what it’s worth, these are the things I remember.

Melrose Park is not that far from where we lived, in the western suburbs of Chicago, but as a kid the drive there felt like it took forever.  In reality, we probably got there in 30 to 40 minutes.  I remember going on Sunday, the day of the procession, but we may have gone more than once during the week as well.  We always parked by my Aunt Emily’s house, one of my dad’s sisters; she lived right on the route of the procession.  The biggest anticipation, by far, was guessing when the procession would come into view.  My cousins and I would all sit on the curb in front of my aunt’s house, and we would watch it unfold just inches from our faces.

This parade celebrated the Madonna, and the statue was carried all through the streets.  I always looked for my Grandma Tirabassi, who walked in the parade along with other ladies from the church.  I remember them carrying their rosaries and reciting the Hail Mary.  It used to just blow my mind to see my grandma in the parade; she felt like a celebrity to me, and I was always so proud when I saw her.

When the parade ended, people from along the route would join in and walk along at the end.  I did this quite a few times; it was the only time I was ever in a parade, even though I wasn’t an official participant.  This was such a huge, big deal to me as a kid.

My aunt’s house is etched in my memory, but vaguely.  I actually lived in the lower level with my parents for the first couple years of my life.  I remember she usually had a spread of food set out in the garage; there were tables and chairs set up, and people would wander in and out.  There was a big stone or cement porch on the front of her house, and we kids made a big deal out of jumping off the side of the porch onto the grass below.  When I was young, I considered this to be very risqué and dangerous; my boy cousins (and there were many of them) liked to play Evel Knievel and do daredevil jumps.

I had quite a few cousins either my age or within a year or two of me, as well as my brother who was two years younger than me.  We were all usually there at the same time.  I was the only girl in this age range; my other girl cousins were all older than me, old enough to not be hanging out with a little kid like me (I don’t blame them).  I loved being around my cousins, who were all boisterous and laughing and happy kids.  They all treated me kindly, even if I didn’t always join in with their shenanigans.  There were always tons of people around, people I called ‘aunt’ and ‘uncle’ even if that wasn’t really their relation to me.  It was just what you called the adults back then.  I would see familiar faces, faces I saw every year at the Feast, people I was happy to see even if I couldn’t remember their names.  There was just such a feeling of comfort and tradition.

I don’t remember any fights or bickering on Feast day.  The adults all seemed to be happy; the kids were all beyond excited.  My aunt lived within walking distance of the actual festival so people would walk down to the Feast area and then back to her house all throughout the day.  Sometimes my cousins would come back with gifts or treats from a stall, and I would beg my parents to get me the same thing.  There were usually balloons there, and I always got a balloon.  Sometimes I’d get the kind that had a shape inside, which I thought were just the best balloons ever.  I think sometimes they were on a stick instead of a string.

When I was very young, I always walked with my parents to the festival area.  We’d walk along the streets, some of which were actually brick and looked like cobblestone streets.  I always loved those and thought they looked so pretty and old-fashioned.  A lot of people had nativity sets and Madonna statues set up in their front yards, and we would admire these decorations as we walked.  Often my parents would know the people who lived along the route to the Feast, so we would stop and chat.  Most people had a set-up like my aunt’s, with food set out in the garage and tables and chairs filled with relatives and friends.

There was a big sign that signified the start of the festival area; when it came into view, my heart would beat faster and I knew we were almost there.  Even now, looking at a picture of that sign brings back those old childhood feelings of excitement and anticipation.

feast sign

Once we got there, it was a crush of people.  People everywhere, getting food or talking in groups or buying trinkets.  Many people had red, white and green t-shirts and Italia jackets on.  Most people were Italian, and I’d hear a mixture of Italian and accented English.  My dad always bought us Italian ice, my absolute favorite treat.  It wasn’t ice like a sno-cone, or really ice at all; it was creamy, bright white and bursting with lemon flavor.  It was sold in a little fluted white paper cup; I would finish it and then push up the bottom of the cup, trying to make sure I didn’t miss any of the sweet, tart delicacy.  I’ve never been able to find Italian ice quite like the kind I had at the Feast; what they sell in grocery stores is not the same thing at all.  Gelato comes close and, oddly enough, so does the Italian ice that Culver’s sells in the summer.

I remember my dad buying these flat, yellow beans; he would squeeze the outer skin and pop the bean into his mouth.  They were sold in little wax bags, and until I did an online search the other day, I never realized they were lupini beans.  Of course, the smell of grilled Italian sausage was everywhere; that and Italian beef were the two main things I remember besides the Italian ice and my dad’s beans.

There was a carnival as well, and we always went on the rides.  As I got older, the carnival became the main attraction for me (well, that and the Italian ice).  As a teenager, it was easy to flirt with the carnival workers and get them to give us free rides; one time my friend and I got 15 free rides in a row on the Zipper.  (Never underestimate the power of flirting!)

Since we had to cross a busy road to get to the actual festival, it was a big deal when my parents finally allowed us to go to the Feast by ourselves.  Sometimes all the cousins would go as a pack; as I got older, I’d sometimes go with whatever friend I’d brought along to keep me company.  (Once I hit junior high and high school, I almost always brought a friend along.)  We would pass a place that sold soft-serve ice cream and that was another big treat, especially getting to go there by ourselves and order whatever we wanted.

In the alleys of the side streets, people would set off huge, massive packs of firecrackers that would pop and bang for long, noisy minutes at a time.  When I was very young, I was terrified of firecrackers so I would hide in my aunt’s house along with her dog, who was as scared as I was.

Once I moved out and then got married and was living on my own, I stopped going to the Feast.  My father actually discouraged me from going in the late 80s and early 90s because there were fights breaking out – I’m not sure if it was actually gangs or just rowdy guys, sometimes with guns.  The last time I went was in 1990, when Eric was just a month or so old.  I didn’t fear for my life or anything, but it just wasn’t the same.  The magical feeling I used to get from the Feast was gone, and I didn’t want to replace my good memories with something else.  I haven’t been back since.

Part of what made it so special for me was just family, having everyone gathered at my aunt’s, eating and talking and laughing.  Part of it was the novelty of getting to go to a carnival, get yummy treats and little gifts I normally wouldn’t get.  (I still have a rosary my grandmother bought me one year.)  Part of it was being trusted to walk there with my cousins and/or my friends, that first exhilarating taste of freedom from adult supervision.

In my mind, memories of the Feast are mixed up with warm sunshine, laughter, wafts of smoke from Italian sausages on the grill, waiting waiting waiting for the procession to start, and sweet, tart, cold lemon.

Silver Linings

We’ve had a spate of hot, extremely humid days here in Illinois.  (Thankfully they ended yesterday, but we have more to come starting this weekend.)  As luck would have it, the a/c in our car seems to be dying a slow death.  We were driving home from grocery shopping on Monday and I turned on the air after a few minutes.  Warm air was blowing out, which is normal after the car’s been sitting and the interior is so hot, but it never got any colder.

“Um, I think something’s wrong with the a/c,” I suggested.  Dave put his hand in front of the vent and then shook his head.  “Nah, it’s fine, it’s just because it’s so humid.  *something something* can’t evaporate because there’s so much moisture in the air.”  We were almost home at this point and I just ended up opening the windows in the car.  I had a bad feeling, but I can’t argue car stuff with Dave because I have no auto knowledge to back it up.

As we did errands the next day, I noticed again that the a/c was blowing tepid air.  I left it running for a while to see if it would get cooler, and I played with the various settings to see if anything helped.  It never got colder.  This time I was more firm.  “There’s definitely something wrong with the a/c.  It’s not working.”  Dave fiddled with the knobs and then reluctantly agreed with me.

I played it casual, even though not having a/c in the car is a big deal to me.  “We’ll just open the windows, no big deal.”  Most of our errands that day were quick and in town, so we weren’t driving on highways or for long distances or leaving the car to sit in the hot sun in a parking lot.  Still, though, we were shouting to hear each other over the road noise and wind.  My hair looked ridiculous when we got home; I had to wet it down and completely restyle it.  (You can’t just run a brush through curly hair – water and gel are about the only things that tame my hair.)  The hair thing is trivial, but the hearing thing is a big deal to us.  We tend to leave the windows shut and the air on even if it’s not 90 degrees with 97% humidity like it was that day.  Since the car interior gets so hot on a sunny day, even in spring or fall, we’ll put the air on if we have the windows shut…and we keep the windows shut so we can hear each other in the car.

“Well, crap – what’s going to happen when we have to drive on the expressway?”  Dave sighed.  “I guess we need to have it looked at.”  He called and made an appointment for next Tuesday morning.

This is our first big frugal hurdle.  We’ve always had two cars at our disposal, so if one needed repairs we could drive the other.  Now we’re down to one car, so we’re at the mercy of others to follow us to the repair shop and drive us home.  (Thanks, Mom!)  I actually thought about renting a car, and then remembered that you usually need a credit card to do that.  We no longer use any credit cards at all.

Which brings us to the next big hurdle:  How much will it cost?  Before, we never worried much about car repairs because we could put the expense on a credit card.  We winced as we handed the card over, but we didn’t really give it a second thought.  Now we’re depending on hard-earned savings to cover whatever the repair costs will be.  Not only do we worry it will be more than we can afford, but we also hate knowing that we’re taking such a hit to our savings.  But that’s what it’s there for, right?  It’s just a big adjustment, getting used to the cash and debit card lifestyle.

Then this morning I put in a new pair of contact lenses.  I’ve been wearing bifocal contacts for about three years now, and I can’t even express how much I love them.  I marvel all the time at the way they make my eyes feel young again.  But let’s be honest…they’re expensive.  And I order them online.  With a credit card.

Now, we’ve been getting around the ‘need a credit card to purchase’ situations with our PayPal debit card.  I refuse to use the debit card attached to our bank account for online purchases.  I’ve had credit card numbers compromised enough to know that it’s entirely possible a thief could get a hold of it and wipe out our bank account before we knew it.  But the PayPal account usually just holds enough money for the purchases we need to make.  I haven’t given the PayPal debit card access to our checking account to cover any charges beyond what we already have in our PayPal account.  That way, if someone does get a hold of our PayPal debit card number, there won’t be much (if anything) to take.  Any charges bigger than the meager amount we have in our account will just be declined.

We did play with the idea of buying Visa/MasterCard gift cards, but it bugs me to pay a $4 or $5 fee just to buy one.  So for now, the PayPal debit card thing is working out fine.

So I knew I was down to my last pair of bifocal contacts.  I usually buy three boxes at a time and, with shipping, that costs around $150.  (Crazy, I know.  But worth it!)  I also knew that I had two ‘back up’ pairs of regular contacts, and one pair of bifocals with a lesser bifocal strength than the ones I’m using now.  Since we have this looming car expense, I reasoned that I could wear the regular contacts for two weeks, and then the weaker bifocals for another two weeks (and save one pair of the ‘back up’ contacts just in case).  That would give me another month before I have to use the last pair of my current bifocals.  I usually place my order when I open my last pair of contacts, and by the time those are ready to be switched out my new order is here.

Sounds good, right?  Save some money, use up some of these older contact lenses I’ve been hoarding…win/win.  Well, I put the regular contacts in and all was well.  I can see great at long and mid-distance.  I was prepared to be using reading glasses for, well, reading and other close-up things.  It’s a pain in the ass, but definitely doable for just two weeks.  Ah, but I forgot about the computer.  And I spend a LOT of time in front of the computer.

I sat here squinting and trying to decide if I should get my reading glasses.  Finally I gave in, and ahhh…there are the words, crisp and clear!  But when I switch to looking other places than the computer, it’s a jolt.  My eyes have to take a while to adjust again.  With the contacts, everything is seamless.  I look at the computer and see perfectly.  I glance away at something in the distance and see perfectly.  I look down and read the keys on the keyboard perfectly.  There’s no adjustment period.

As I started to apply the very minimal makeup I wear every day (concealer for my dark circles, and a small amount of eyeliner) I realized I couldn’t see my eyes clearly in the mirror.  I could see well enough to get the concealer on, but getting that fine line with the eyeliner was a no-go.  I can’t see the line of my eyelid well enough.  I had completely forgotten how hard this was before I got my bifocal contacts.

I hesitated, not wanting to misjudge and stab myself in the eye with the eye pencil.  I tried putting on my reading glasses, but if I pushed them down on my nose so I had access to my eyes, then I couldn’t see through them.  I ended up lifting them UP and peering through them that way while I quickly lined my eyes.  (No, going without eyeliner is not an option if I’m leaving the house!)

So yes, these are very much First World Problems, and they aren’t complaints, just observations.  Once I get my bifocal contacts again, I will give extra thanks to whoever invented these wonderful little gems.  Hopefully our car won’t use our entire savings account to cover the repairs.  At least we have a car, and have the money to fix it.  And even if we didn’t, we can live without a/c in the car – it’s just a huge inconvenience for two deaf/HOH people in the humid Illinois summer weather.  It’s icky but it won’t kill us.  (It’ll just kill my hair for the day.)

To cap off this triad of Debbie Downer topics, we got Dave’s final Hep C viral load count…and it went UP.  From 4,000 to 9,950.  When he talked to Mita, she said they would have pulled him off the treatment for sure because his number needed to be less than 100 to continue.  Dave was less disappointed by this than I was.  He kept reassuring me, saying that he reacts to things different because of the bone marrow transplant and his subsequent years of graft-versus-host disease.  And I know that’s true, but it was just so disappointing, you know?  He went through all of that for nothing.  It bothers me to know it went back up so quickly; it would have been nice to hear that he’d cleared the virus, even if it didn’t stay that way for his three month test.

Well, anyway.  He’ll get another viral load test at the end of October and we’ll see how much it’s gone up by then.  Maybe there will be a trial he can get into in the future; at the very least, there should be some new medicines available through the VA in 2015.  Everything we’ve read is encouraging as far as the condition of his liver for the next couple of years; even without clearing the virus, the treatment did help bring the number down quite a bit and that is good for the health of his liver.

Silver linings – they’re everywhere; you just have to look for them.

Thyroids Gone Wild

We headed off to Dave’s 12 week appointment at the Hepatitis C clinic feeling a little unsure of things.  We didn’t know if we might catch a slightly judgmental attitude because he went off the treatment after they tried to help with the different GERD medication.  Dave had called Mita on Monday to let her know he had stopped the treatment again, and we never heard back from her.

“Now, if Mita yells at you, just leave the room,” he joked, as we got closer to the hospital.  I knew he was just teasing, but I admit I was slightly nervous about this visit.

When we were about 10 minutes away, I said, “I guess you didn’t need to get there an hour early for labs, since it doesn’t really matter anymore.”  Normally he tries to get to the lab around 8 am so they have his results back by the time his 9:00 appointment with Mita rolls around.  They use the lab results to tweak the Ribavirin and PEG-interferon dosages, if necessary.

“What?”  Dave was shocked.  He looked at the clock; it was around 8:30 at this point.  “Oh my God…I didn’t even think about that.  I was thinking the appointment was at 10:00 and we had plenty of time!”  After freaking out for a couple minutes, he just laughed at himself.  There was nothing we could do at this point, and we would still get there in time to go to the lab before the appointment.  They just might not get the results back in time.  Since he was off the meds anyway, what difference did it make?

As we walked in, it was cutting it pretty close – just about 10 minutes to 9:00.  Dave decided we should just go up to the Hep C clinic floor and he could do the labs afterward.  We got up there and the waiting room chairs were filled up – a husband/wife couple we’d never seen before, and one guy that was in the classes with Dave.  We don’t see him all the time because he lives far away and does some of his appointments at a location closer to his house.  We chatted with him a little bit and it turned out that he had cleared the virus as well.  So of the three people in the class (Dave, Mr. S and the lives-far-away guy) Dave was the only one yet to get the ‘all-clear’ on his viral load.  This is a little ironic since he has the type of 1a virus that is supposed to respond the best to treatment.  Of course, he may have cleared the virus now…we won’t know until his test results come back next week.  But the other two guys cleared first, obviously, since they already knew they were clear.  We congratulated our faraway friend and waved goodbye as he left.

Mita smiled and waved from her office, so that put us at ease.  She came out to let Dave know that he would be seeing the doctor this time, and he wouldn’t be in until 10 am.  Dave asked if he should go back down to the lab, since he hadn’t had time earlier, and she told us to go on down.

After his labs were done and we waited for a while, we headed back up.  I had never met Dr. N before – the one time I didn’t go with Dave was the one other time he had an appointment with him.  Mita joined us for the appointment.  Dr. N started out by asking Dave about the GERD symptoms, so Dave gave him all the details of how it was affecting him, and explained that the new medicine was pretty much the same, if not worse.  He looked through Dave’s records and confirmed that Dave was a candidate for fundoplication surgery to help with the hiatal hernia, which is the main issue.  Thanks to the GERD medicines Dave already takes, he has no problem with acid reflux.  But the hernia was making food and the Hep C medicines wash back up into his esophagus.

The doctor scheduled Dave for a surgery consult, so he goes for that in one month.  From there, he turned to the lab results and made a comment about Dave’s thyroid level.  He asked Dave how he was taking the thyroid medicine, since it needs to be taken an hour before you eat.  Dave explained that he gets up every day at 5 am and takes his thyroid medicine.  Then he would  eat a snack at 6 am, before his dose of Victrelis and Ribavirin.  He was very, very careful about taking the thyroid medicine properly because he knew the Hep C meds could mess with his thyroid levels.

“Well, obviously the Hepatitis C medicines were preventing your thyroid medicine from being properly absorbed,” the doctor continued.  “That happens sometimes, and your level is really high.”  To be honest, we’d forgotten about the thyroid issue.  It was mentioned at the first class, and they checked Dave’s thyroid values at the end of January, before he started treatment.  Everything was fine, and it was never mentioned again.  Apparently they don’t test the thyroid again until this three month visit.

I was sitting behind the doctor so I did miss some of what was being said.  At one point I could tell they were talking about medication dosages and I asked him to clarify – was he talking about the thyroid medicine?  I thought he was telling Dave they were going to increase his Synthroid dosage.  After he explained that he was talking about the GERD medicine, I asked him if Dave’s Synthroid dose would be changed since his thyroid level was high.  He said no, just keep taking the same dosage and the level would probably come down on its own since he’s no longer on the Hep C meds.  He’s getting his thyroid re-tested in a month.

The general feeling from the whole visit was one of compassion and a willingness to work with Dave to help him feel better in general.  There was no sense of ‘Why didn’t you try harder?’ or ‘Why didn’t you just stay on the treatment even with the side effects?’  The impression we got, from the doctor’s reaction to Dave’s thyroid level, was that he probably would have been taken off the Hep C meds even if he hadn’t had the issues with the Victrelis burning his throat and lips.

Ironically, talk of the Hep C treatment was very minimal during this visit.  There was no mention of future treatment plans or any concern about his viral load at all.  Pretty much the only thing that was discussed was the fundoplication surgery and the thyroid issue.  Towards the end of the visit I finally asked if they would be testing his Hep C viral load now and in the future.  “Oh yes, it’s very possible that you cleared the virus, so we’ll re-test you in three months to see what’s happening,” the doctor explained.  “If you’re clear now, there’s a chance you might still be clear then.  I doubt it, but we’ll see.”  Mita then reminded Dave to call her next week to check on the current results of his viral load count.

They didn’t sound optimistic for it to stay clear if, indeed, he has cleared the virus by now.  But even if it does come back, at least he’ll have knocked it back a bit while we wait for newer medicines to hit the market.  Luckily, there are LOTS of drugs for Hep C in development right now, so we’re optimistic that if he needs them in the future, he’ll have some new options (most likely without the use of the PEG-interferon injection).  If you’re curious, this is a great article on all the Hepatitis C drugs currently in trials and what’s going on in the industry:  http://www.pipelinereport.org/2013/hcv

Dave wanted a copy of that morning’s lab tests, so we went down to the records department to request them.  After we got the envelope, Dave handed it to me while he went to the bathroom.  I couldn’t wait, so I pulled out the results and scanned them.

When he came back out, I said, “Hon…did you know your TSH is 77?  Seventy-seven!  The high range of normal on this sheet is 3.74!”

He grabbed the paper from me and stopped walking so he could read.  I could see him looking back and forth between his TSH number and the range of normal printed to the right of it.  I knew how he felt – when I first looked at it, I thought I was seeing it wrong.  My first instinct was to skip past the decimal point in the 3.74 and read it as 374.  I had to keep staring at it to realize that no, the high range of ‘normal’ is less than four, and his TSH is 77.  Good grief!

Of course, we got all animated and talked about this for the whole drive home.  It explained so much.  The first thing we did when we walked in the house was turn on our computers and look up the symptoms of hypothyroidism.  We kept reading threads where people would freak out if their TSH was something like 7 or 10, and they all talked about how they could barely function at that level – they were so tired, etc.  Two of the biggest symptoms are weight gain and fatigue, and that completely explains why Dave has been so, so exhausted and why he gained 15 pounds in the space of a month.  I mean, sure, you expect to gain weight when you have to have a snack with 20 grams of fat to go along with your Victrelis pills, three times every day.  But 15 pounds in a month?  That was a bit much.

Now Dave naps when he feels like he needs to, and I think he feels less guilty about it because he knows there’s a medical reason for him being tired.  His GERD and hiatal hernia symptoms are back to normal; the Hepatitis C meds were obviously a main culprit.  We’re counting down the days until his next TSH level is tested (last day of July) so we can see how far it’s come down.  We really have no idea how long it will take for it to return to normal, or if it ever will without a change in Synthroid dosage.

We started walking in the mornings again (while Dave has the most energy) and we did stop the 30 Day Shred workout – that was just a bit too much.  Easy does it!  This is pretty much the end of his Hep C chapter, unless he needs to be re-treated in the future.  Things are slowly getting back to normal.

How Farrah Fawcett Almost Ruined My Childhood

In 1976, I was 12 years old.  I had a head full of wild brown curls and a body full of hormones that were wreaking havoc on said hair.  All the magazines I read gave advice on how to care for your hair, but they assumed that everyone had stick-straight tresses.  Following their advice, I would brush my hair over and over to make it sleek and shiny.  Instead, I ended up with this:

Not exactly sleek and shiny

Not exactly sleek and shiny

Later that year, Farrah Fawcett’s famous red swimsuit poster came out.  It was everywhere.  There she was, in poster-sized glory, with her gleaming smile and those lush, voluptuous…feathered bangs.  While all the boys studied other aspects of the poster, all the girls were asking, “How can I get that hair?!”

Pretty soon, just about everyone in school had feathered hair.  You couldn’t walk ten feet without seeing somebody whip out a comb from their back pocket and run it through their hair, which would ripple and settle into a beautiful feathered pattern.

I was in 7th grade that year, just starting junior high at a brand new school.  I was desperate to fit in, and I begged my mom to take me for a feathered-hair haircut.  I think I vaguely remember the hair stylist telling me that she wasn’t sure my hair would cooperate, but I was young and naïve.  If you just got the right hair cut, your hair would look like the hair in the picture…right?

Um….wrong.  Here’s my class photo:

Huh...how come I don't look like Farrah Fawcett?!

Huh…how come I don’t look like Farrah Fawcett?!

I ended up with wings.  I could take flight with the things sticking out of the sides of my head.  It was the first truly disappointing and embarrassing hair moment of my life, and I had to go through a whole school year like that.

By the time I reached high school, my hair was growing out and I was learning to use a curling iron to straighten it.  (Yes, young whippersnappers, they didn’t have flat irons back then.)  Instead of curling my hair around the curling iron barrel, I would snap the barrel over my hair near my scalp and then slide it straight down to straighten it.  After going through my whole head of hair to straighten it this way, I would go back and curl the sides back in a big flip.  It was the closest I could get to the feathered hair effect.

Since my hair was so curly, if it was humid my hair would immediately begin to curl and lose the shape I had worked so hard to achieve.  Forty-five minutes of hair styling could be undone by a five minute walk outdoors in the humid summer weather.  I bought a portable curling iron as my weapon against humidity, and I kept it in my purse all the time.  You pulled the top of it and a plug would magically pop out of the base.  In between just about every class, I would stop off in the bathroom, pull out my curling iron, plug it in and fix my hair.  After my friends and I went out for a walk around the neighborhood, I’d stop back in their bathroom to fix my hair.  I probably spent more than half my day trying to keep my hair straight and feathered.

Here’s hunch-shouldered photographic evidence of my hard work, circa 1980:

Looking at this photo, I can tell humidity was getting to my hair.  Time to fix it (AGAIN).

Looking at this photo, I can tell humidity was getting to my hair. Time to fix it (AGAIN).

In my junior year of high school, something magical happened.  Curly hair started to be popular, and people were getting perms.  Perms!  I wanted to embrace this new hair movement, but I was still absolutely clueless about taking care of curly hair.  I had clued in to the fact that you never, ever use a brush on curly hair (I used picks) but I had no idea how to use hair products to help tame my curls.  In their natural state, my curls were still unruly and not uniform – definitely not a pretty sight.

By now, my mom was working as a hair stylist and she came up with a way to give me a perm that wasn’t a full perm (since I already had some curl).  I’m not sure what voodoo she worked but I think it involved a shorter processing time, and maybe she used less of the chemicals.  The end result was magical.  I had uniform curls, all over my head.  No longer did I have a curl spinning in one direction away from the others, or a section of my hair that was merely wavy and not curly.

Behold the hairstyle I rocked for many years, starting in 1981:

It's actually hard to tell but it's all CURLS  here!

It’s actually hard to tell but it’s all CURLS here!

Finally I was free of the straight-hair envy I’d been fighting for so long.  I totally embraced my curly hair, and even when perms fell out of fashion and straight hair came back, I stuck with my curls.  I was older and wiser, and happy to be different from most other people hairstyle-wise.  I felt so much freedom compared to my days of spending over an hour doing my hair.  I had discovered hair products that helped keep my curls in check, and doing my hair now took all of 10 minutes.

After I had my first baby, my hormones once again went wild and my hair became much more curly…so much so that I no longer needed the ‘light’ perms.  My hair was doing naturally what I used to need a chemical to achieve.

No perm here -- thank you, hormones!  (And look at my handsome hubby...who was my boyfriend at the time.)

No perm here — thank you, hormones! (And look at my handsome hubby…who was my boyfriend at the time.)

I haven’t straightened my hair since I was 19.  It took a while, but I learned to embrace what God gave me and not fight it.  I’m proud to be a curly girl!

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