Rambling about anything and everything

I spilled water all over my keyboard yesterday…augh!! (as Charlie Brown would say)  I was using a medium-ish mirror propped up between my desk and Dave’s to keep an eye out for people coming up behind me.  Every time the desks shifted, for whatever reason, the mirror would fall forward and knock over everything in front of it.  (Usually my pen/pencil holder and a frame holding a small photo of Paige.)  It was getting really annoying, happening more frequently, even though I’d try to wedge the mirror into the space between our desks so that it wouldn’t move.

Normally I keep my water glass on a coaster on the right side of my monitor.  For some reason I just set it on the left side yesterday, and I was processing UPS labels for orders we were shipping.  Out of nowhere…I mean, as far as I know, the desk didn’t move at all…but that darn mirror fell forward, knocked over the pen/pencil holder and the frame, which fell into my water glass and BAM…all over the keyboard, all over the floor (which is the fake wood stuff that locks in like puzzle pieces…not entirely waterproof!)  I was horrified.  On the one hand, the glass was only about 1/3 full.  On the other hand, it’s still a LOT of water and it all went straight into my beloved keyboard.  😦

I jumped up, screaming and swearing, holding the keyboard upside down while water literally gushed out.  I was frozen in place, not sure what to do first…where do I set the keyboard, since it’s connected with a wire and all available surfaces are drenched in water?  (If it had been wireless I could’ve run over and set it in the sink or something.)  I knew if I didn’t get the water on the floor mopped up, it could be a disaster and make the flooring swell and pucker up.  Dave heard me screaming (LOL) so he flew up the stairs and into action.  We got everything dried off and he took my keyboard down to the workshop, to try to dry it out and salvage it.  Unfortunately, although it did work when we reconnected it, some of the keys were doing crazy things…the shift key and function keys would make all kinds of windows pop up.  So I switched to one of the basic old keyboards we had lying around the house…what a difference!

This keyboard was a Christmas gift to me from Dave, since I have carpal tunnel syndrome.  It’s the only one that really keeps my hands in a good position and keeps the pain at bay.  (It’s a Microsoft Natural Ergonomic Keyboard 4000)  It looks like a mountain – raised up in the middle and sloping down on either end – and I love it!!  I was actually having a hard time typing on the regular keyboard; I had no idea I was so used to this one.  Dave went out and bought me another one today – what a sweetie!  Money is sooo tight right now so I never would have bought one for myself, but he insisted it was a medical necessity. 

In addition, he bought round mirrors (I think they’re meant for cars) that stick on, and we’ve got them positioned around my monitor.  Now I can view the comings and goings behind me in 3 different directions, and the mirrors don’t fall down!  I love it!!

I’ve been thinking a lot about the things I’ve gotten used to as an adult with hearing loss, mainly lipreading and closed captioning.  I’ve become active on some forums and mailing lists for people with cochlear implants, and I noticed that a lot of times people will mention that they no longer lipread or need captioning once they get their CI.  For some reason, the thought of not lipreading or using captions kind of panics me.  Isn’t that weird?  I mean, if I don’t need it then it’s not like I’m being deprived of anything.  But I really can’t imagine not using the captions/subtitles when I watch a movie or TV show, and I can’t imagine not lipreading when someone talks to me.

The lipreading thing is probably something I’ll always do, just because it’s how I’m used to communicating.  It would be nice if I didn’t have to lipread to understand, but if a person is facing me when they speak, I’ll probably always read their lips as well as listen to them.

The captions though…man.  Even if I can hear better with CI’s than I can with hearing aids, I think I’ll still use captions and subtitles.  I spent so many frustrating years watching TV and only understanding a small portion of what was going on.  I’d get a few words here and there and figure out the story from what was happening on screen, but a lot of the really funny stuff flew by me.  When captioning started being offered on more movies and shows, and we got a TV that had captioning built in (probably in the early 1990’s or so – I think it was around the time Paige was born in 1994) it just opened up a whole new world to me.  I re-watched so many movies that I had originally seen without captions, and it was like seeing them for the first time!  For example, I saw The Breakfast Club over and over again (without captions) and never knew that Anthony Michael Hall’s character wanted to get a fake ID so he could vote.  LOL!  8)

Anyway, Dave relies on captions as much as I do, so even if I can suddenly hear everything we would still use captions for his sake.  Ironically though, the kids have perfect hearing and they always turn on captions too.  Eric said he prefers them, and this kid has supersonic hearing!  It’s pretty much all they remember though – captions have always been on the screen when we watch TV.  I even think it’s helped them learn how to read!

It’s funny though, how nervous it makes me feel to think of going without these things that have helped me for so long, even if I end up not really needing them.  I actually feel defensive about it, even though there’s no reason for me to.

Quickly changing the subject but still sort of related to what I was saying before… my mom has super-high expectations for the CI and that’s another thing I’m kind of worried about.  She keeps saying things like “Oh, you won’t need that anymore” or “You won’t have to worry about that anymore” when we talk about learning sign language or cued speech, or having to lipread all the time.  She’s talked to a couple of people who know people who got CI’s and she’s hearing all these amazing stories about how the people hear better now than they did with hearing aids.  She really feels that this is going to “cure” my deafness and I know she really thinks I’m going to be activated and hear perfectly.  I’ve told her over and over that it doesn’t work that way, that I’ll always be deaf, but she still says this kind of thing.

It is putting so much pressure on me, which is making me a little defensive.  I know she just wants me to be able to hear, and I can understand that.  I know she means well and she loves me.  But oh my gosh, I can’t stand to think of the disappointment she’ll have if it’s not the way she expects it to be.  Even if I do end up with awesome hearing right off the bat (which I absolutely, truly do not expect) then how is she going to deal with it if I still need to lipread and have captions or if my hearing declines someday for whatever reason?

It’s kind of ridiculous…I’m almost 44 and she’s 70 and I’m still worried about disappointing my mom.  I know all that really matters is how I deal with things and my own personal attitude about it.  It just kind of drives me crazy that she wants me to be something other than what I am.  I know she feels like life is not “normal” now that I’m deaf, and she’s said more than once that she can’t wait for me to get the CI’s so things can go back to normal again.  I know she has problems with anxiety and it’s her thing to deal with, not mine.  I guess I must feel guilty for stressing her out.

Hmmm.  Who needs therapy when you can write it all down and figure things out for free?!  💡

Now, seriously here, I am not that stressed out or anything.  I’m actually in a really good mood right now.  I just tend to get introspective when I’m writing and I think it comes off a little more intense than I mean for it to.

So at this time, one week from now, I should be home from the hospital and the surgery will be behind me!  (It’s 10:40 pm right now)  I’m slowly working my way through all the stuff I want to finish before the Big Day.  I’m going to get all the bills paid before I go in, since I’m the one in charge of that.  Paige got her physical and that’s all taken care of.

BUT…I can’t drop her high school registration papers off because I still don’t have them!  The school sent a registration packet but all the information was for some other kid.  I emailed them on July 5 to let them know, and the Asst. Principal replied at 7 am on Monday, July 7, to say the correct papers were being mailed “immediately”.  It’s July 15 now and I still don’t have them…it takes one day for mail from the school to reach our house.  Since I want to have the papers filled out and dropped off along with the payment before I have the surgery, I’m getting a little concerned.

That’s my project for tomorrow – go to the school and just pick up the right papers from them.  I think I want to pick up a different shirt to wear on surgery day too.  The one from Salvation Army fits but it’s a little too snug and short for comfort.  I like to wear everything loose and long…I know it makes me look fatter 😛 but I really can’t stand it when my shirt constricts me.

We were going to watch a documentary called “King Corn” tonight – we are huge fans of documentaries here and I always check to make sure they’re subtitled or captioned.  (Because they’re usually low-budget productions, a lot of times they aren’t captioned.)  I found a website that said it was captioned so we went ahead and rented it from Blockbuster Online…but it wasn’t captioned after all.  Darn!  (This is not to be confused with the documentary “King of Kong”…which is captioned and is really good, BTW!)

Hey, on a final note…I did eventually get those items I requested on loan from the Illinois Assistive Technology Project!  I think my request must have gotten set aside or misplaced for a month or two, but the items did come last week.  It was really helpful to get a chance to see them and see how they work so we could make well-informed purchase decisions.

Dave came home with all kinds of weird stuff (foam noodles for the pool we don’t have, for instance) so I think he’s getting ready to concoct some kind of crazy bed thingy for my recovery period.  He loves this kind of thing!  I have no idea what he’s going to do but I’m sure it will be interesting.  😀

Surgery thoughts

Surgery is just a little over a week away.  People are starting to ask me if I’m excited or nervous.  To be honest, I hadn’t been thinking much about the actual surgery.  At this point I’m more focused on trying to get things finished up before surgery day rolls around…I’m paranoid that I’m going to be really knocked on my feet for a week or more, so I’m trying to get as much done before surgery as I can.  Focusing on this stuff has pretty much made me forget I’m even having surgery soon!

I’ve been trying to get as much stuff together for Eric’s move to a dorm (next month) as I can.  We’ve been going through the stuff in his room together, since organization is not his strong suit, and throwing a lot of stuff out, setting other stuff aside for him to sell at Half Price Books, etc.  I’ve got Paige’s appointment for her school physical coming up on Tuesday.  I have to drop off papers for a property tax exemption this week, and get to the store to buy a big pillow to use during my recovery period.  After I use it, I’ll send it with Eric to his dorm.  And of course, finishing up the orders we get throughout the week.  We’ll be closing as of Friday, which is also making me nervous.  Since that’s my only job, not taking in any money from the candle business until we reopen is going to be pretty stressful.  All I can do is hope that I recover quickly enough to reopen soon!

But yeah, it’s getting closer and I’m starting to think a little more about going under the knife.  Surgery itself doesn’t bother me too much since I’ve been through it a couple times before.  I know that I’ll be nervous, then I’ll wake up and it will be over.  It’s the waking up part that makes me most nervous.  I’m hoping they give me something to prevent nausea from the anesthesia, since I know it’s made me sick in the past.  (After the first surgery I had, to remove impacted wisdom teeth, I always made sure to mention that anesthesia makes me wake up sick to my stomach.  After that, it’s always been fine so I know that “anti nausea” stuff does work!)

I worry about feeling so bad and out of it that I won’t want to leave the hospital.  That’s what happened after the dental surgery.  They kinda had to kick me out of recovery…otherwise I would’ve stayed there all day, in a nauseated daze.  The last thing I want to do is spend the night in the hospital so I warned Dave that I might put on a brave face and then kind of collapse in the car, just to get my butt out of there.  I’ve done that before with blood draws – I feel like I’m going to faint but I smile and walk out to the car with tunnel vision, and then I collapse on the seat.  I’m fine once I put the seat back and just lay there for a while.

I’ve got to figure out something to do with my glasses so I can put them on when I wake up in recovery.  Unless I’m feeling really awesome and can just put in my contacts (which I highly doubt), I’ll have to find a way to wear my glasses with both of the arms removed.  Abbie suggested a chain or lanyard on my glasses that I can drape over my “head bra” (LOL!) and that sounds like the perfect solution, so that’s another thing I need to work on this week.  I only wear my glasses when I first wake up and for about 30 minutes before I go to sleep, so once I get home I can switch back to contact lenses.

I do worry about big surgical complications like my facial nerves being cut or damaged, but I try not to dwell on that kind of thing.  I think my biggest concern is my sense of taste being affected.  I know this is a really common complication or side effect of CI surgery, so I kind of expect it to happen.  Since I’m having both ears done at once, if my taste nerves are cut or affected then it will affect my whole tongue versus just one side.  I can’t imagine either not being able to taste anything at all, or having everything taste metallic or the opposite from what I expect it to.  I love food (a little too much…ha ha!) and I don’t eat out of boredom or stress.  When I eat (and overeat) it’s because I really enjoy the way something tastes.  It’s going to be really strange to give up that pleasure if my taste nerves are cut, so I’m a little concerned about that.  Then again, if I eat less I might lose weight, which wouldn’t be a bad thing.  😀

The only other thing I kind of expect to happen, and I’m dreading, is getting vertigo or dizziness.  I don’t have much of a problem with that, but I’ve had a couple of experiences with vertigo in the past (usually connected to a cold or ear infection) and oh my gosh.  It’s really miserable!  So I’m really hoping the vertigo and dizziness isn’t too bad during recovery.

On a totally unrelated note, we watched the final Summerfest fireworks display from our deck tonight.  Since we were outside watching, I could feel the deck shaking when the bigger fireworks went off.  It was a perfect night – no bugs, a light breeze, it had cooled off (almost to the point where I could’ve used a light jacket and long pants, instead of shorts and a t-shirt).  The fireworks went on for about 30 minutes and were absolutely spectacular!  The really cool thing was for the super loud ones (the ones that set off car alarms), I think I was hearing them a little bit!  At first I wasn’t sure, and I thought I was just feeling the vibration, but after a couple of the big ones I could definitely tell I was hearing them just a little bit.  It was so weird to actually be hearing something other than tinnitus.  In fact, I realized my tinnitus had quieted WAY down for a little bit, when I was concentrating so hard on hearing the loud fireworks.  Of course, then when I realized that and started thinking about the tinnitus it came back again.  Still though, it was a really enjoyable fireworks display and a beautiful way to cap off the evening.

Pre-Op

The pre-op prescription was floating around the house for the past week, taunting me. Every day there was a new reason not to go for the tests, and a week passed before I finally accepted my fate. Yesterday was the day.

The prescription was written for 3 blood tests, a chest X-ray and an EKG. The meningitis shot was not on the prescription but I had a letter from the doctor’s office explaining why they recommended it for cochlear implant patients. Along with that letter I had an FDA notice that the doctor’s office gave me, as well as a vaccine reimbursement form from Advanced Bionics. Since it’s not covered by many insurance plans, AB offers a reimbursement program for the cost of the vaccine.

I figured I would show these papers to the hospital where I got my pre-op tests and get the vaccine at the same time. Originally I had planned to go to a local convenient care center for the pre-op tests, since I had been there in the past and knew they did that sort of thing. However, the hospital happened to call at a good time for once (on Monday morning) to finish the pre-registration, and they said it would be best to do my pre-op at a hospital in their system. The hospital that my doctor is affiliated with is 45 minutes from my house, but there’s a hospital just 5 minutes away (where Paige was born, in fact) that’s in the same “system”. They confirmed that I could go to the closer facility for my pre-op tests and everything would be present in their computer system. Very convenient! It’s a good thing I did end up waiting for a week because I would’ve gone to the wrong place for the pre-op tests. See? Everything happens for a reason! 🙂

We headed out at 10 am and I was actually not very nervous. I was, however, anticipating a really long day. We parked and walked in to the admitting area. We signed in and waited to be called to a desk to register. We didn’t wait long and before I knew it, Dave was patting my leg and motioning for me to follow him because we had been called. As we sat down, Dave explained that I was deaf but that I did read lips. The woman introduced herself and Dave gave her the prescription, explaining why we were there. She asked if I had ever been there before – if I was in the system – and I answered her, which surprised Dave. She was really easy to lip read, though! Although I had been there 14 years earlier to give birth to Paige, my last name was different so I explained that. It turned out that all that pre-registration back-and-forth with the other hospital really did pay off, and I was already in the system for my upcoming surgery. That helped speed things up.

Dave mentioned the meningitis shot and showed her the paperwork. She had to go ask someone, but it turned out that they didn’t give this vaccination at the hospital. She wrote down three things on a post-it note for us and said we could get the vaccine there. That was disappointing because I really wanted to just get everything overwith in one place.

After confirming a few more things and taking copies of my driver’s license and insurance card, she walked us upstairs to the lab waiting room. That was really nice – no getting directions and having to hope we heard them correctly!

Once in the lab, we waited just for a very short time and I was called back to the phlebotomy area. Dave had been joking that he hoped I’d get my blood drawn last, so he wouldn’t have to drag my unconscious body around the hospital. 😆 (I’ve passed out more than once in the past, so he knows that getting my blood drawn can be a major event!) He came back with me and again explained that I was deaf and lip reading. For some reason, there were two other people there just kind of hanging out in the doorway, watching me get my blood drawn. I still don’t really know why they were there – originally I was under the impression that they were waiting so they could take me to my next test. They disappeared before I was finished though, so maybe they were just bored and had nothing to do. ❓

The phlebotomist put the tourniquet on, had me make a fist, and slapped the crook of my arm a few times. Turned it this way and that, made concerned faces, slap slap…whap. Off comes the tourniquet. Went through the same thing on the other arm with the same results. I saw her turn and take out the butterfly needle and tubing, and inwardly cringed. The last time I had blood drawn this way, they put the needle in a vein on the top of my hand. It hurt like hell and the blood stopped draining about halfway through, so the woman had to kind of wiggle the needle around and get it started again. (That, folks, is where I check out. Ugh.) 😕

Well, this time the needle was placed more near my wrist. In fact, I just checked to see if I could find the mark and it’s totally gone – no bruising either. It stung a little bit and I was afraid to look to see if the blood was actually moving through the tubing into the vial…when I look at the blood, that’s another thing that makes me pass out. However, Dave was right there and he gave me a thumbs up, mouthing that it was fine – as soon as I read his lips, I was able to relax. It took longer than a typical blood draw but not as long as I feared, and before I knew it she had all 3 tubes finished. I got my band-aid and stood up to go for my chest X-ray, fully conscious and not at all lightheaded!

We went back to the waiting room and very quickly, another girl came to get me for my chest X-ray. Dave gave the now-routine explanation about me being deaf. I was pleased that this didn’t seem to freak people out, and they still spoke to me rather than directly to Dave. We went into the x-ray room and I was happy to see that Dave was allowed in as well so he could repeat what I wasn’t able to lip read. I explained to the technician why I was having the X-ray and that no, I wasn’t having any trouble breathing, etc. I was directed into the bathroom to change into a cloth gown, and was able to understand all of her instructions.

When I came back out, it got a little involved. I had to stand a certain way, with a very specific type of posture, facing the x-ray machine which was right by the wall. There was a chin rest on top of the machine, but I had to turn my head to read the girl’s lips as she told me what to do. Eventually she just maneuvered my body the way it needed to be, and then stood in front of me, mimicking the deep breathing I had to do before I was told to hold my breath. Then I held the position and stopped breathing until she came back. (Gasp!) We went through the whole maneuvering thing again for a side view. Then we waited while they checked the films to make sure they were okay. Once she came back and gave us the all-clear, I was able to change back into my clothes and go back to the same waiting room in the lab.

After we got home, Dave mentioned that the girl was still talking to me even when she was behind me. I had no idea, obviously! I suspect that was when she started taking matters into her own hands and just kind of placing me the way I needed to be. It got the job done! That was definitely the most ‘involved’ of all the procedures I had done.

We were given directions to the cardiology lab, which I was actually able to catch (two rights and then a left). Again, we had a very short wait before we were taken back to a small room for the EKG. Dave was with me, as well as the technician and someone he was training. This guy talked very fast and talked mostly to Dave, but that was fine with me. All I had to do was lie down on a table while he fastened some leads to my chest and legs…I think my arms too, I can’t remember. I didn’t even have to change into a gown. He did tell me that it would be a little cold (and it was!) and then just told me to relax. He was explaining things to his trainee and I just laid there, looking around the room. It took only one minute and he was taking the leads off – amazingly fast! Apparently everything was okay because Dave heard him telling the guy that everything was normal as they looked at the readout.

And that was it – we were done and out the door at 11:30. We went back to the house to call a few places about the vaccine. We started with my regular doctor, since it was recommended to see your primary care physician for the vaccine. Their office was closed for lunch. Then we tried the convenient care place where I originally planned to go – we know they give out flu shots during flu season so we figured they could do the meningitis shot. Nope – they don’t keep it in stock so they would have to order it and it would take 2 weeks. We tried the county health department – same answer. We called 2 or 3 other places and nobody had this vaccine. I was amazed because we took Eric for his college physical in June and had them give him the meningitis shot, and it was no big deal. (He sees a different group of doctors than I do, though, and apparently the type of vaccine he got was different from mine.)

Finally, I took a look at the post-it note that the girl had given us at the hospital. Originally I thought it was one long name but I realized it was 3 separate names of places to try. We had already tried 2 of those places and the last one came up with no hits in Google. I decided to try it as one word instead of two and ta-dah…there it was. Dave called them and YES, they could do it! By now it was 12:40 pm and they gave us a 1:30 appointment. We ate a quick lunch and headed out the door at 12:55.

I was following a map Dave had printed and told him it was just past a certain street. We passed the street and the only place it could possibly be was in a little strip mall, which did happen to have a medical place in it. As we drove by, we realized the numbers were totally wrong and the medical place looked more like it rented walkers, crutches, etc. than the type of place where you would get a vaccination. So we thought we’d turned off too quickly. However, the very next street we passed was obviously past the location on the map where this building was supposed to be located.

We turned around (it’s 1:25 at this point) and headed back in the other direction. Dave told me to get rid of the map because it was obviously wrong. Instead we were looking for building numbers. We decided it had to be in the big hospital we’d passed, so we turned in there.

Well, there were NO building numbers visible from the road. We drove through the maze of parking lots and buildings for 15 minutes, looking for any clue that we might be in the right place. There were no building numbers anywhere. Finally we parked and started walking. We went into the first building, which was 1585 and close to the number we were looking for, which was 1555. We walked into a dental office and asked if they knew where our building was. No idea, but maybe it was the next one over? By now I’m really late and we’re both feeling very frustrated, but we walked and walked and walked until we found another building to enter. This building had no number above the doors but we walked to the board listing all of the facilities and room numbers in the building and there it was, the place we’d been looking for. Finally!

We didn’t wait long before we were called back and explained to a very nice nurse why I was there. Dave told me later that they had told him on the phone that they don’t normally give this vaccination without a 2 week waiting period (I guess the amount of time it takes to order and receive the vaccine), but they made an exception for me because of my surgery. I guess they must keep a few around for desperate cases! Anyway, we showed her all the papers because there was a specific vaccine I needed, Pneumovax 23, to protect against the type of organism that causes bacterial meningitis in cochlear implant patients. They recommended different vaccines for different age groups. I guess this vaccine isn’t the same as a “meningitis vaccine” so she wasn’t sure which I should actually receive, or if I should get both of them. She ended up calling my ENT’s office just to clarify and make sure I received the correct vaccine.

After waiting for her to return from making the phone call, the vaccine was produced and the shot itself was no big deal. Today my arm is a little sore but it’s nothing like the pain and soreness I had from the Tetanus booster I received last year, so I’m pretty relieved.

We walked out of there at 2:30 and high-fived each other. Pre-op complete!

The vaccination had been the least of my worries and it ended up being the biggest ordeal of all, ironically. After that we went over to the Salvation Army store and I found a button-up shirt to wear on surgery day. I’m just not a shirt-with-buttons kind of person and can you believe I did not own ONE summer shirt that buttons up?! The only ones I have are flannel shirts. Since I work from home making candles, all of my clothes are very casual and of the jeans and t-shirt variety…all of my shirts pull over my head. It was recommended that I wear a shirt I can button up on surgery day, so I don’t have to pull anything over the bandages on my head. That makes total sense to me, but hey, I didn’t want to spend a lot of money. So I got me a $1.00 shirt that’s actually pretty cute. LOL! (Our Salvation Army has amazing deals on clothes and that’s where I usually get all of my jeans.)

When we got home, there was a letter from my doctor’s office confirming the surgery date and time of 8 am. I need to be there at 6:00 am, which means getting up around 4:30 am and leaving at about 5:15 to arrive on time. No food after midnight (which is fine, since I never have an appetite at 5 in the morning!) and just sips of clear water with any needed medications for the 4 hours before surgery. I have to stop taking any herbal supplements 2 weeks before surgery (I don’t take them anyway) and no pain reliever except Tylenol for the week before surgery.

They mentioned the pre-op tests too – they need the results the week before surgery, so I’m glad it’s all done in plenty of time. Then they also included the post-op instructions, so I have them filed away in my CI folder.

Oh, they also mentioned not to chew gum (this is in the paragraph that tells me not to eat after midnight and only sips of clear water for the 4 hours before surgery, so I guess they mean no gum chewing after midnight). They said it can delay surgery 4-6 hours or cause cancellation! I wonder why? I never chew gum so it’s not like I’m going to forget and pop a piece of gum in my mouth (in fact, I don’t think there’s even any gum in the house) but how weird!

That should be everything until I get the call from the surgery dept. 1 or 2 days before surgery, with any instructions on checking in, etc. It’s really happening!!

Worrying for nothing

I have a tendency to worry about things, especially events where I have no idea what’s going to happen.  I’m sure part of this is just my personality, but I think part of it comes from growing up with a hearing loss.  I learned the hard way that arriving in a situation unprepared for what might happen was twice as difficult for me to navigate as it would be for a hearing person.  If I wasn’t sure where I was supposed to go or what I was supposed to do, I would have to ask somebody.  If I was lucky, I would actually be able to hear and understand the instructions I was given.  What usually happened was that I’d ask, be given an answer that either I couldn’t hear at all or heard part of, and then one of two things would happen:  I’d go off in the wrong direction, looking like an idiot, or I’d ask for the information to be repeated, and not hear it again the second time.  THEN I’d go off in the wrong direction, too embarrassed to ask for a third repeat.

So I started planning things as much as possible.  I’d try to find out as much information as I could to eliminate as much of the unknown as possible.  This works fine for certain situations, especially now that the internet is here with so much information at our fingertips.  For other things, there’s no possible way to know how things are going to go, so I just worry…usually for no good reason.

One of the things I was really worrying about was this surprise birthday party for my mom, which was held the last Saturday of June.  My brother came up with the idea and my first reaction was one of total dread.  I really dislike parties, partly because it’s so hard to hear but also because I have a hard time with small talk.  I’m fine if I get into a long conversation with one person but flitting from person to person, making small talk for 10 minutes or so each time?  Can’t do it.  I sit in a corner and people-watch instead.

Usually I just avoid parties, and now that I don’t work outside the home it’s much easier to be a hermit.  I don’t get invited to work events (company Christmas parties, picnics, wedding and baby showers for co-workers, meeting after work at a bar, etc.) so I don’t need to constantly come up with excuses.  Now that I’m older, the family events are fewer and fewer, as all of my cousins got married and the required showers and weddings are now far in the past.  Small get togethers are fine and I enjoy those, but it’s rare for me to be invited to a party these days.

Well, I couldn’t very well bow out of this party, so instead I worried.  This would be the first major event I’d be attending as a completely deaf person.  I didn’t know for sure who knew about my recent deafness, although I assumed it would be everyone in attendance since my mom keeps in touch with all our extended family members by phone.  To give myself an emergency exit, I warned my brother ahead of time that lipreading for an extended period really wore me out, so I might only stay for an hour or so.

I knew my reaction was really silly – of all the things to worry about!  The worst that could happen would be that I’d sit by myself for a few hours, which isn’t a big deal.  By the time the actual party day rolled around, I had kind of calmed myself down – playing the “What’s the worst that could happen?” game usually has that effect on me and helps me to see that some things just aren’t worth the time it takes to worry about them.

I’m happy to report that this event was one of those “not worth worrying about” things.  The party started very small, just me, my brother, his wife and her family.  This was actually great for me because I wasn’t plunged into a sea of people and faces, trying to lipread everyone at once.  People came by gradually throughout the afternoon, and I worked out a good system of sitting near the front door so that I could welcome people right away.  It gave me a chance to see them on their own, not surrounded by a bunch of other people, and lipreading was easy since it was the usual “Hi, how are you” kind of thing you say when you first see someone.

I was able to focus on and lipread people pretty well.  Much of the time I wasn’t involved in one-on-one conversations but rather observing a conversation between people I was sitting or standing near.  This took the weight off me because if I didn’t catch everything, there was no embarrassment.  But if I did catch a few things being said, I could interject and join the conversation briefly.

As more and more people arrived, I pretty much stayed in one place, sitting with Dave.  People would get up and leave and new people would join us, so we weren’t isolated but we also weren’t in the main group of people.  One thing that was hard to judge was how loud I should talk.  I had no idea if there was music or sound from the TV, or how loud the background noise of people talking really was.  Since Dave has trouble hearing in those situations, I tried to talk louder for him.

I noticed that I didn’t have any extra trouble understanding my brother’s in-laws, which was a nice surprise.  They’re from Poland and his wife’s parents have accents; his wife and her older sister have slight accents but I never had trouble understanding them.  I always feel terrible when I can’t understand people who speak with an accent – it’s more related to my hearing loss than their inability to speak clearly, but I feel like they think it’s because of the way they speak.  I have total admiration for them, learning a new language and becoming fluent in it…I certainly couldn’t do it!  So I really do feel badly when they talk to me and I struggle to understand them.  Well, for whatever reason, lipreading them was not a problem.  I think I actually understood them better at this party than I ever have!

We ended up staying for 4-1/2 hours, and really having a nice time.  I’m glad I force myself to do things that make me nervous – they don’t always work out well, but when they do it just gives me more proof that some things are just not worth worrying about.  Maybe someday I’ll be totally calm and worry-free!  😀

Silent and Sparkly

We’re a little laid back as far as the 4th of July is concerned.  We throw some food on the grill and that’s about it.  We don’t buy fireworks or sparklers, we don’t go to a fireworks display.

When the kids were younger, we made more of an effort.  Our town doesn’t do fireworks on the 4th because a week later, we have a 5 day long carnival/summerfest that culminates in a huge fireworks display (which we can see well from our backyard deck).  So we would pack the kids up and go over to a town that had fireworks.  Before my dad died, we’d go to my mom and dad’s house and watch the town fireworks display that I had grown up watching.  After my dad died and my mom got her townhouse just 5 minutes away from where we live, we started going to her house.  But the kids have never been big fireworks fans.  They actually get bored and start wandering around after a while.  When they were really little, it was difficult to keep them from running off in the middle of this huge crowd of people.  Then we had to deal with mosquitoes and fighting massive traffic jams to drive home.  After a while we just kind of looked at each other and said, “Why are we doing this?!”  If the kids loved it then yeah, we’d put up with it because it’s only once a year.  But really, they could care less.  So we stopped worrying about getting ourselves over to a fireworks display and just hung out.

Still, though, I do love fireworks.  I prefer to watch them from the comfort of my backyard, up on the deck where the bugs aren’t as bad as they are if you’re sitting on a blanket in the grass.   slap! The display our town puts on to start Summerfest is a nice one, on a Wednesday evening.  But the one that marks the end of the fest, on Sunday night, is a sight to behold.  Every year there are new, really unique fireworks that are truly amazing, and it lasts for nearly 30 minutes.  The fireworks are actually set off about a mile from our house, but we see pretty well from our deck.  (Over the years some of the trees have grown tall enough to block our view of the ones that get set off closer to the ground, but most of them are so high in the sky that nothing blocks them.)

I always wondered what it would be like to be in a small plane, flying around on the 4th of July.  We usually see a few planes flying by in the midst of the fireworks display and every time I see them, I imagine people inside, looking out the windows at fireworks below them.

With my hearing aids, I could hear the “pop” as the fireworks shot into the sky, before they actually exploded.  I’d hear it and then look up, anticipating the gorgeous colors and surprising displays.  Of course I heard the deep boom and felt the ground shake on the really loud ones.  (And heard the car alarms that always got set off in the aftermath.)

Tonight, we were watching “28 Days Later” when I noticed my cat, Sugar, suddenly flatten himself to the couch and look around wildly.  Our dog, Toby, jumped up.  I looked out the window and saw a burst of color.  It was fireworks going off in the next town (most likely the display that my mom’s town was having).  We turned off the TV and the lights, and watched that display as well as a smaller one that looked to be from a few streets over.  Everything was silent as I watched the sky, waiting with no warning for the bright displays of color.  The silence didn’t take away from their beauty, but it still changed the whole experience for me.  That little chill I used to feel when I heard the deep booms and whistling sounds of the fireworks going up into the air was gone.  There was no anticipation, no holding my breath and wondering what I might see.

When I was a kid, I used to be afraid of the loud noises fireworks used to make.  For a few years, I refused to go to the fireworks displays – I would stay at my aunt’s house with her (totally terrified) dog, while my parents and relatives walked over to watch fireworks.  Who would’ve ever guessed there would be a time when not only did they not scare me, but I wouldn’t even be able to hear fireworks?!  😯

Three Weeks

Finally!! I had a tentative surgery date as of last Friday evening but I wanted to wait until this week to say anything because it still wasn’t definite then. My doctor was on vacation last week, so my surgery was set up with the hospital but he still had to confirm that the date was good for him.

Apparently there was a cancellation and they were able to give me a surgery date of July 22. That is exactly three weeks from today! In three weeks, at this time (7:45 pm as I’m writing this), my surgery will be over. I can’t even believe that!

There’s a small, tiny chance I might even be activated before my kids have their big school events in August! I just checked and exactly 4 weeks from July 22 is August 19. On August 20 Paige goes for freshman registration (when she gets her books, ID, locker assignment, yearbook photo). On August 21, she has to go BACK to school for freshman orientation AND that is the day Eric moves into his college dorm. So if I don’t get activated on August 19, I have to put it off for a few days (and be deaf for those big events, which would be really disappointing). We’ve already decided I’ll have to take Paige for orientation while Dave stays here with Eric and they get the car packed up with all his stuff. When I get back, we’ll have to jump into the car and get him to the university, which is about an hour’s drive west of here. It’s going to be a long day!

Anyway, we’ve been playing phone tag with the hospital since Friday. First they called and it showed up on caller ID as some generic call, which Dave didn’t bother to pick up. On Saturday he was checking voice mail and realized the generic number had been the hospital – they were calling to pre-register me. They weren’t open again til Monday (yesterday) so he couldn’t call them back. On Monday he had a dentist appointment and about 5 minutes before he needed to leave, the hospital called (this time the caller ID showed the hospital’s name). He answered the phone, started to answer their questions but had to tell them that he had to stop because he had to get to the dentist.

After he got home, the hospital called again. This time it was a woman with a really heavy Indian accent and he couldn’t understand her (he has a hard time on the phone, just like I used to). He tried, but finally asked if they had a TTY number. He got that number and called back on our TTY (this way I could do most of the typing anyway). Turns out it was actually a relay call, which was really weird – I’ve never been given a TTY number that ended up being a relay call! Well, it was a comedy of errors – they said they didn’t see an appointment for me in the system and everyone was very confused. He had to end that call and call my doctor’s office. It turns out everything was under “Wendy” (which is the spelling on my birth certificate) and not “Wendi” which is the way I commonly spell my name. For some reason, when he typed Wendi on the TTY, the hospital thought he was typing “Wend(semicolon)” like: Wend;
Ha! That would be a weird name!

My doctor’s office did confirm that my appointment had been made with the hospital, and I went ahead and made an online account on the hospital’s website, where I was able to fill in my pre-registration information. I figured that would take care of it all.

So! As Dave’s talking to the doctor’s office, he makes an appointment for me to see my audiologist today. They had been asking me what colors I wanted for the CI and I was caught totally off-guard. I had no idea what to do – I thought I needed to pick just one color but it was actually one set of colors and there are 4 different colors in each set. On top of that, I forgot that I’ll be getting two CI’s and was trying to decide if I wanted different colors for each CI. I wasn’t sure what comes with the kit/set that they order and my audiologist finally suggested that I come in and pick everything out before she places the order.

Well, today just before we were going to leave (I was putting makeup on at the very last minute) the phone rings – it’s the hospital again. These people have the worst timing! For whatever reason, they are still determined to take down this pre-registration information that I’ve already given them online. They called through the relay service so Dave put the receiver on the TTY and I ran back and forth from the bathroom (as I was doing my hair and putting on makeup) to answer whatever questions he didn’t know the answer to. Well, after only a minute or two everything coming to us on the TTY was just garbled – none of it made any sense. And once again, he had to tell them we had a doctor appointment and had to go – could we call them back?

My appointment was at 2:30 and we didn’t get home til 4:30 today, which is after the pre-registration office closes. I’m sure they’ll call again tomorrow, 5 minutes before Dave needs to leave for his annual appointment at the VA hospital. 🙄 (By the way, I’m hoping he can get in to the audiology clinic tomorrow and get some information on starting the CI process for himself.)

My appointment with the audiologist was really just a casual visit and not an actual appointment (thank goodness, because those $50 co-pays are starting to add up!) It was nice to see big smiles on everyone’s faces and know they’re as excited about this surgery as I am! She pulled down the Advanced Bionics kit and first asked me what color processor I wanted. Originally I figured I’d go with the beige color, since it’s the color I’ve always had for hearing aids. But she suggested the dark sienna, which is actually a very dark gray (nearly black). I put it on and looked in the mirror and yes – it looks really good against my hair, which is very dark brown (with red highlights, thanks to hair dye). So I totally surprised myself by choosing the dark gray processor. She mentioned that I’ll be getting two processors per ear – a regular and a backup – so I could actually get one dark sienna and one beige per ear. I decided to just get the dark sienna for both. (Am I the only one who finds that color description to be a little misleading? I always think of reddish-brown when I hear “sienna” used as a color name.)

Then we got to the color sets. I already knew for sure that I wanted the Techno colors, which are marbled (red/purple, green, blue, red/blue). I was torn between the Sophista colors and Metallic colors for the second CI. There’s a lot of pictures of the Metallic colors on the AB website and in their literature, and they look awesome. I also liked the more muted (but still fun) Sophista colors, but I mentioned that I’d never seen them on a CI, just in the color chart. It turns out she had a Burgundy color cap that I was able to see! That helped me decide for sure on the Metallic, although the Sophista colors were a really close second. She said she’s going to add the Sophista colors to the order – sometimes they go ahead and process it, so it doesn’t hurt to try. But I’ll definitely have the Techno colors and the Metallic colors – yay! I’m going to wear a Techno color on one CI and a coordinating solid color on the other CI. I’ve got a plan, people. 😀

The kit comes with a lot of great stuff – a storage case with a built-in Dri-Aid, travel case, 4 batteries per CI plus a charger and travel charger, the T-Mic (I think I might be getting two of those, I’m not sure) and a Direct Connect earhook for MP3 players, etc. I tried on both the Plus and Slim powercel batteries because I was concerned the Plus might be too big. They really didn’t feel much different on my ear so I guess I have big ears! 😆 She’s ordering two Plus and two Slim powercels per CI, and suggested that I only open one of the Plus size. If it turns out to be too large and hurts my ear, I can exchange the unopened ones for Slim size instead. Very cool!

I asked if they use a facial nerve monitor during the surgery (yes) and when to expect activation. She said they wait one month, to be sure I’m completely healed and the swelling has gone down, which helps the magnet on the headpiece stay connected to the implant. When I go in for my post-op visit, to have my stitches removed, we’re supposed to schedule all of my mapping appointments. She told me who to ask for, since she’ll be on maternity leave by then. The audiologist I’ll be working with is supposedly very experienced with Advanced Bionics and bilateral implants. We’re also supposed to mention that I’ll be getting two CI’s mapped, so they need to add extra time to my appointments.

That was about it! We stopped back at the front desk to ask about my prescription for the pre-op procedures. I figured it would be easier to just pick it up since we were already there, rather than have them mail it. Now THIS I am nervous about! I have to get 3 bloodwork-related tests (CBC, basic metabolic panel, and PT/PTT), plus a chest X-ray and EKG. I’m not nervous about the tests themselves, just the actual act of having to try to talk to these people when I can’t hear anything at all. I’m bringing Dave in with me for as much as I can, but obviously he can’t be standing next to me during the chest X-ray. I started my usual worrying to him earlier this evening: “What if they walk out of the room and tell me to hold my breath while they take the X-ray? I’m not going to have any idea what to do!” Gah. I think I’m seriously more nervous about the pre-op stuff than the actual surgery.

Well, maybe not. But almost!

So…July 22nd it is! I had the date marked on my calendar in pencil, but today I went over it in pen. It’s official.