I Need a Tune Up

Things have been going really well with the device, I'm starting to be able to fall asleep more easily and more importantly to stay asleep.  I still occasionally get woken up by feedback if I lie on my side but that's more worrisome than annoying.  They said there was the possibility that scar tissue could form again (though it would be less than last time) and every time I hear feedback I get scared that it has and that I'll have to go have it removed again.  I'm still on volume 4 of program C because every time I try to change it to 5 I hear this incredibly annoying high pitched noise that I actually don't think is feedback, I think it's just a sound that something in the world at any given place I am makes, but it's so annoying that I always switch back to 4.  I think I need to have my frequencies adjusted because when I put it on 5 I hear that noise but when I plug up my ear it goes away, so I figure it's from outside because if it was in my ear then it would stay there even when my ear was closed right?  I'm meeting with the woman from Envoy next Monday though so hopefully she'll have some idea of what it is and how to fix it.

Besides that though I have to say that things sound fine when I'm out and about but when I'm somewhere noisy, it's almost impossible for me to hear out of my implanted ear.  The background noise is not only overwhelmingly loud, it's distorted and it envelopes everything I'm trying to hear.  It's almost like static because it's so many overlapping things.  I emailed the woman about it and she said she can program it to "function better in background noise" so I'm hoping that will make a difference.  The other thing is that I got a new hearing aid in my other ear so while it used to be unbalanced that my new ear sounded better than my old one, now my hearing aid ear sounds a little louder and better than my implanted ear.  Not much, but ever so slightly enough that it's noticeable.  It evens out though because my hearing aid is still a hearing aid, it still whistles sometimes (significantly less than my old one, but it does), I have to take it out to swim and sleep of course, and it's just something I have to be aware of.  Even the little things, like that moment of panic if I'm out and I realize I forgot to bring batteries, is just something that comes with a hearing aid.  None of these things are a big deal or anything, they're just aspects of the hearing aid that I guess subtract enough from the volume and quality that I get from it to make it about even (maybe a little better than actually) with the Esteem which is, without having had any adjustments since it's been turned up, giving me about adequate volume but other things too.  We'll see where things stand after next Monday.

Finally, Volume!

So this is waaaayyyyy long overdue and I'm probably going to miss out on some of the nuances of the last month because of it but things have been crazy busy.  Now that I have some free time though, here's the update!

Last things first:

I went to Texas last week and finally the device has been turned up to "normal" volume!  It's not even at the full volume capabilities of the device but it's giving me full hearing at this point.  I think I will still try to turn it up a little bit when it heals more since there is still some very minor feedback when I sleep but so far it's been really wonderful.  I love being able to hear when I wake up, when I shower, and for the first time this weekend: when I swim.  The verdict is still out on being able to hear while sleeping, I'm not sure I'm a fan of that, noises keep waking me up!  I still feel weird, like I should still be having the circumstances of 2 hearing aids.  For example, I find it really hard to believe that an alarm clock could possibly wake me up with just noise and no flashing lights or shaking the bed, even though it's already happened a few times with no problems.  I still have a mini-gasp of panic once in a while when i put my head under the water and I realize I can hear and I think I've forgotten to take my hearing aid out.  But I finally feel like all of this is worth it because even with one hearing aid, things are just easier.  I can share earbud headphones with people, swim with people I don't know without worrying if they'll look out for me and try to keep me included, sleep without worrying about emergencies or even just lie down on my side during the day and still be able to hear because I don't have to take my hearing aid out from the discomfort of pressure.

Ok, now moving backwards, click "read more" to keep reading, this is going to be a long post

Well... OK then!

I'm not sure what exactly I mean by the title of this post, but it's kinda just how I feel right now.

I had surgery on Friday morning to have scar tissue removed, the whole thing was over very quickly, I think it took about 2 hours total and I was back in my hotel room by 11am or 12 feeling pretty much normal!  I haven't met with my doctor yet so I'm not 100% sure of the details but basically I think they took a look in my ear and saw that there was in fact scar tissue on the device and when they tested the device its functioning was really poor because of the tissue.  They removed the tissue and tested the device again and that allowed it to work "excellently" (my doctor's words) which is really exciting.  They made a small incision behind my ear (along the same line as last time) to replace the battery but other than that they did everything through the eardrum which was much less invasive and I have little to no pain from it, though vicodin helps haha.  There is a small chance that scar tissue could develop again but apparently even if it does it will be less and the removal would be equally simple.  As I said, I still haven't seen my doctor yet so this may change but it seems that because the Esteem is already set, I can just turn it on myself in a few weeks once I've healed and see if there's feedback and adjust the volume or just turn it off again accordingly and then in a while have another adjustment.

So, the less invasive method did come at a minor cost which is that I am now stuck in California for a week.  I know, I know, there's worse places to be stuck but I would really like to go home and I did have plans this week but oh well, what can you do, it is nice to not be in pain and to feel fine almost immediately following surgery.  And I get to go shopping since I had only packed for a day long trip.  The one thing is that I can't go up any elevation whatsoever because of how my eardrum is which makes most of the wineries in the area off limits but I'll live, I'm just glad it went well and that things are moving forward.  I think that's the most exciting thing, for the first time I feel like I'm not just backpedaling on things that should have already been fine a year ago, even though maybe technically I am, I feel like I'm moving forward, and that's the only direction I want to go from here.

Even though I really really really wish I was in New York, sorry California, you're not my type.

Anyway, I'm meeting with my doctor on Thursday and flying home that night so I will be sure to update you after that.

And Another Bump in the Road

Well I really should have known at this point but another stumbling block has come up.  I saw my doctor last Saturday and he took a look and what he saw is not that I have calcifications and fluid that can be cleared up by a tube but rather that I have no fluid (meaning it has healed) but I do likely have scar tissue that has formed over the device preventing it from functioning fully and causing feedback thus limiting volume level.  So I am heading back to California on Thursday to have surgery Friday morning to remove the scar tissue and hopefully this time it will heal without scar tissue.  The device will have to be turned off again and I'll have to wait another 1-2 months to turn it on again.  For those of you who don't know, on August 29th I am heading off to graduate school in Israel so there is a bit of a deadline in trying to get as much done as quickly as possible, hence the rush to get me to California so that some adjustments can be done before I leave.

My doctor completely warned me that this could happen and what it would mean and I think I've reached the point where I'm more annoyed by these things than upset.  At least we're flying Jet Blue, they have Terra blue chips which makes me happy, though my jaw may hurt too much for them on the way back.  The surgery will be going through the same incision and everything and the healing process should be equivalent to what it was in December though with me, who knows right?  Whatever, I'll get through it and even though lately I have been very frustrated it's more because I can sense with what small benefit I have gotten that this will be good, one day, I just wish that one day was a bit sooner than it seems to be for me.  But at this point I am still looking forward to what the Esteem promises.  If I can have as much hearing as a hearing aid but not the hassle of a hearing aid (or I guess 2 since I still have the right aid) then that would be good, I would feel good about that.  We'll see though, it seems to be a waiting game for me, I am certainly learning patience which is not something I've been good at in the past.  I do have one quick story that I want to share about an element that I think I was less concerned about than I should have been in what I'm looking to get out of the device but that I found out the hard way is important:

This actually happened maybe 2 months ago but I've been very hesitant to share it because I am going to live on my own again in the future and I don't want people to worry about me, or at least more than necessary.  Anyway, what happened was that one night I came home from dinner and was just going to take a quick shower and go to sleep.  Now I couldn't hear the fire alarms in my apartment building at school at all, ever, I have literally been in my apartment watching TV through a fire drill before and because of that I had a thing in my bedroom that was supposed to be able to pick up on any fires or alarms and flash a strobe light in case I was asleep.  But when I was in the shower with my Esteem turned on I heard like a faint banging noise.  At first I ignored it because the walls in my building were incredibly thin so I was always hearing neighbors and music and such through the walls but it persisted and it sounded close so I decided to check and I found my friend hysterically banging on the door and I could see that the fire alarm was going off and once I was in the hallway I could hear it as well.  It turned out not to be a big fire, but there was a fire and the only reason I heard my friend knocking was because of the Esteem.

It was interesting, on our way out I grabbed my hearing aid and put it in, and when we were in the hallway I could hear the alarm.  But, when we stood in the lobby, next to the hallway without any barrier between the two or anything, I remarked that I was glad they had turned the alarm off and my friend told me that it was actually still going, so even with my hearing aid in, standing next to the hallway, I couldn't hear it.  So, yes, as I go forward in life and as I will be moving around and such and I won't be carrying a fire alarm notifier around with me (especially since it didn't even work) I will feel better having backup.

Step by Step

So sorry for the lack of updates, I've been busy with finals and graduating from college and such, you know, minor things.  There's a few updates that I'm probably not going to do justice just since it's been so long and there's been so many other things going on, but now that I'm home for summer just want to keep my thousands and thousands of loyal readers posted.

I had another adjustment in the beginning of May.  I am still not at full volume which is, while disappointing, expected since I hadn't been able to turn up the volume much after my first adjustment so I could tell there was still a lot of fluid.  However, while this adjustment did give me more volume (though still feels like not much, I think it feels like less than it is though because of the frustration of not having full-level hearing than because of the device) it did change the quality of the sound.  The tech (a new person) adjusted something and as soon as she did the sound around me felt different.  Even though it didn't feel louder, though technically it was, it just felt... brighter.  I can't exactly explain it but while before silence had felt and sounded kind of dead, all of a sudden it didn't anymore.  I think the best way to explain it is just that before, any noises or sounds I would hear sounded like they were in a vacuum, and with the adjustment they didn't anymore.  As I've gotten used to it it feels a bit duller, but still brighter than it was and that's a promising experience.

There was still a definite limit to volume though and when she looked in my ear she saw calcifications on my eardrum, probably from the healing process, also she could see that there was still quite a bit of fluid.  These calcifications are weighing down my eardrum dampening the quality of any sound that even makes it through them and this combined with the fluid is limiting the quality and volume of what I can hear.  Fortunately though these are apparently all fixable problems and my doctor happens to be in town this weekend so I will be seeing him tomorrow to find out what he thinks I should do, which it seems will probably be putting a tube in that will both drain the fluid and get rid of the calcifications.

I promise to update in a more timely manner after I see him tomorrow and let you know what's next and what he says.

On another note, I'm trying to get a new hearing aid for my other ear (the right side) since the one I have is getting old and does not quite cover my loss which has worsened a bit in the last year.  So far it's been frustrating, first the earpiece didn't fit and I had to have a new mold taken and sent in to get the hearing aid remade.  Then today we went back and there were issues with feedback and volume again so it has to be adjusted and I'll have to go back again soon.  I know that it's a process and it takes time to get the right fit with a new hearing aid but I kind of wish I didn't have two "processes" going on at once, oh well, what can you do, it is what it is, that's the way the cookie crumbles.  Anyway, I'm out of optimistic cliches for now, so until I have more updates this'll have to do.

Ambient Noises

I've still been hovering between A4 and B3 depending on the day, weather, whether I'm lying down or not, etc.  Just wanted to share a quick story that happened the other day: I was walking down the street and I've had problems with feedback on B3 in rain before so when I started hearing a high pitched whirring/screeching noise I felt a bit exasperated since B3 had become comfortable more or less.  It kept stopping though and then starting again for just a second or two, it was very strange so I turned to my friends who I was walking with and asked if they heard like a screeching noise, faint but high pitched.  They said no, but I kept pushing it, every time it stopped and started I would point it out.  Finally one of them was like, "oh, that's a bird!"  My response? "Jeez, that's annoying".  Anyway, before you get all emotional I have heard birds chirping before, I mean, I do hear them with my hearing aid, I suppose this particular one's call had just been out of range for me before.  I'm getting used to new noises being just that, new noises and not feedback.  It's kind of cool, though I'm looking forward to having new noises (hopefully) that sound nicer than feedback.

A longer update will be posted soon and I have another fitting scheduled for May 7th so for those of you reading (hi mom, dad, grammi and les) be sure to check around then :)  And for you loyal readers who I didn't just say hi to, hi to you too!

Going "Swimmingly"

I'm on Spring Break now and am back home but for the first few days I went with my friend and her family to Florida, where they had rented a house complete with a private swimming pool.  Now this is what I've been looking forward to, a HUGE reason for my wanting the Esteem is just the extreme isolation I've experienced when swimming in the past.  When you can't hear, even if you are participating in things it is still isolating if you don't know what's going on and swimming is just that x1000 because without my hearing aids I'm not just missing something here or there, I can't hear anything at all.  So, I was really excited to go swimming this break, even after the fact that the volume is so low on my Esteem so far and that I haven't been able to turn it up for any extended periods of time.

False Alarm

Well, not a complete false alarm, the fluid is definitely going down and I am able to sleep longer and longer before there's feedback, but I still can't turn the volume up.  I tried going to class with it on B3 and it was pouring rain and it was the strangest thing but when I was walking through the rain there was feedback to the rain (like a droplet pattern of feedback) and then when I would be under a shelter, the feedback would stop.  There was also just general feedback a little too though when I would move my head and such so I turned it back to A4.  I think when I am home not really doing anything or moving it's fine but when I'm out and about it's not quite able to handle it and there is still too much fluid.  Today is my last day on the medicine, I just took my last dose, I really hope that has been helping because I don't like to take too much medicine and it kinda messes with you so I would want it to be for something.  I still get glimpses of moments when I think it's all going to be worth it but I am so tired of waiting and I'm also tired of quickly running around to peoples' left sides so I can hear them.  I'm a week away from only having one ear for 3 months (I would say I still effectively only have one ear) and it's exhausting and I'm so beyond ready for that to be over.  It's frustrating to have a goal that you can't actually work towards, like I can't try really hard to make it so I can turn the volume up and I can't strive to make the fluid go down, I just have to wait.  Anyway, I'll keep you posted.

Progress or Perception?

So I'm not sure if it's that the steroids are helping the fluid go down and that's making sound a bit clearer or if I just wasn't really giving it a shot before but I can hear TV (though not clearly understand the words without captioning) when I watch it on my computer when my hearing aid is turned off and I can even turn the volume to B3 which is not really much louder but feels a bit clearer, but I don't know, maybe it's all in my head, either way I'll take it.  We'll see if I can sleep with them on A4 tonight, I've always had to turn them off because I sleep on my side and I switch sides and I don't last too long on my left side before there's feedback.  I will also try spending tomorrow on B3 and see how it goes; I tried once before but there was too much feedback when I'd move my head at certain angles and when I ate.

Also I tried listening to music from an earbud headphone while in the library with my friend, which I hadn't had a chance to try since I don't own any earbuds, I could hear the music and the words though not really understand them, though I don't think I could not-understand them significantly less than when I listen to music with my hearing aids (I never know what lyrics are when I just listen, I always need to look them up).  I really hope that one day soon I will be able to wear earbuds in both ears, especially since I'm getting really tired of reading magazines while exercising and I miss listening to music on my way to and from places.  I just really want to be able to listen to music or tv and pop an earbud out if I need to pay attention to somebody or something, I love my big headphones but they are unwieldily and can be a bit of a hassle to take off and put back on in rapid succession (imagine somebody talking to you and they keep remembering new things to add every few seconds and having to maneuver large headphones each time... ok maybe it doesn't sound like a big deal but it's a hassle, a minor one, but a hassle)  I'll give my big headphones a shot tomorrow, we'll see if the sound is too uneven and awkward with one low-volume esteem and one hearing aid.  Anyway, it makes me very very nervous to admit that things are coming along, I mean who knows what could go wrong at any moment, but they are, so I'm just gonna go with it for now and accept that it's small and it's good.

Sorry if this post was less than coherent, I think the library is starting to get to my head and the 4 shots of espresso and 2 cups of coffee I had today don't really serve make my thoughts any clearer, not to mention if maybe the meds could be affecting me.

Underwhelmed but optimistic

I am so sorry about the lack of updates after such an important thing as the device being turned on.  I basically went home for 2 days, came back to Baltimore, got slammed with work, went to the library and haven't really left since.  I'm going to go back to the library as soon as I'm done with this post actually, I'm very studious this semester, I hear that's a good thing though possibly.  Ok, so, the activation, it went fine.  Not particularly exciting, definitely underwhelming, but I can actually tell that it will be good.  Here's what happened: