I Feel Like Giving Up

So yesterday was my meeting with the Unitron rep. Spent about an hour with him and my audi (both of who are great) trying to get the unitron aids set to a comfortable level for me. Left there feeling pretty uncertain, just cannot seem to get the tinny/mechanical/high frequency sound to be gone and for it to be more natural. I do not feel as though I am hearing even close to the level I was with the Widex or with my current aids. I only wore the unitrons for a few hours before giving up. I was in tears pretty much all afternoon listening to how horribly distorted sounds were (dog barking sounded like a fucking alien), couldn't understand my husband or son, the volume was WAY lower than I am used to (when no one was specifically talking or making noise it sounded silent...not picking up the background sounds I want) and the background noise eliminator program is, ironically, terrible.

So I switched back to my Phonak Perseos and I am giving up for now. I just can't do it anymore. This is so fucking ridiculous that I cannot just GET WHAT I HAVE NOW!!!! Why would they stop making a hearing like what I have?? At this point I feel foolish for actually being hopeful that I might actually get something BETTER that would give me more freedom. Yeah right. At this point I would be happy to just have what I have now. I feel very risky running around without a back-up, especially now knowing that if they DO break, that's it for me.

I just keep thinking how totally and utterly unfair this is. Its bad enough that I have this disaility and problem and have to fucking deal with it, but now I can't even keep myself at the same level??? I don't even know where to go from here. My husband suggests I find a new audiologist or go somewhere bigger and maybe I should. My audi seems like she doesn't have THAT much experience with some of the newer aids, but she is always willing and accomodating to help me, get a rep in, get on the phone while trying to program me. I emailed my old audi, who works on a larger scale, and asked for guidance or advice what to do next. She had basically told me that I needed to give one of these new aids a several month trial in hopes that "it would sound more natural to you." She has always been one to push me towards new technology and a cochlear implant. (Side note: yeah right!! What if I hated the sound of the cochlear? I'd be screwed.)

I just don't know what to do. I refuse to accept that I cannot find a fucking hearing aid out there with the power of the Widex that also has a program for a background setting!!!! I mean, those aids with that program have been around for years!! How can they have just...eliminated them???

Getting New Aids Should Not Be This Hard!!!!!!!

So I wanted to take a minute to write what's going on right now.

After a recent visit to my old audiologist, I mentioned I should look into getting new aids b/c my "back up" pair no longer works. She recommended the Naida V, and I set forth to try it out with my current audiologist. Thus has begun a month-long journey to get new aids that actually work for me...so far, nothing. As a lovely sidenote, I apparently cannot just purchase a new pair of my current aids, nope, don't make them anymore. And the new and improved technology is not working well for me and my type of loss. So basically--what started as a quest to be proactive and progressive (buying new aids before my current ones crapped out) has led to about 10 appointments, several appointments with a screaming toddler, 2 hearing aids tried and failed, massive flare-up of the sores in my ears from all the taking in and putting out of hearing aids, a lot of frustration, depression, and hopelessness. Here is the rundown:

1. Tried the Naida. Didn't like it but gave it a shot
2. Several adjustments with Naida. Horrible. Cannot understand jackshit. Can't hear the person sitting in front of me, but picking up sounds 2 rooms over, which is only complicating matters.
3. Tried the Unitron 360. Initial success.
4. Several adjustments with Unitron. Problems: too loud, blocks out sounds I need to hear, voices and especially music are way distorted.
5. Try the Naida again, this time with the rep on the phone. No improvement. Constant sound of cotton-in-the-ear, or like I have a horrible cold.
6. Discuss desire to stop trying the "new" technology and just replace what I have. Am told by 2 audiologists and the rep that they no longer even MAKE what I have (Phonak Perseo dAz) because everything is going with the "new and improved" technology, which apparently is so wonderful it works for everyone. Except for you know, the few people like me who will just have to deal with it.
7. Serious meltdown. WTF.
8. Research and finding a hearing aid forum give me several bits of insight, namely the names of a few other hearing aids that my audiologist didn't mention, and the fact that on Phonak's website they very evidently DO still manufacter the Perseo.
9. Appointment today to try a pair of Widex aids.
10. Appointment tomorrow with the Unitron rep.

So there you have it. I started out very positive and hopeful and am now at a point where I feel just awful. Normally I get along just fine with dealing with my loss, but when I'm forced to think about it like this, I notice WAY FREAKING TOO MUCH how much of a disadvantage I'm at. And it truly sucks. I just want to get past the point of trying to find something and actually BE at the point that I have something that works. I am so sick of appointments, and I'm so sick of bringing my son to appointments. I try to arrange for him to go to my husband's work for a bit (my mother-in-law runs the business and can watch him) but it doesn't always work.

I did find a forum that is somewhat helpful www.hearingaidforums.com.

New Hearing Aids

A few weeks ago, I was fitted with new hearing aids. My old hearing aids are about 3 years old, and pretty much work fine. However, my "back-up" hearing aids (the ones I wear to the pool or on a boat, or take on vacation with me in the event of needed a spare) stopped working after last summer. Since I absolutely CAN NOT be in a situation where I don't have a back-up, I decided it was time to get new aids.

The Phonak Naida hearing aids were recommended, and I was pretty excited. They are supposed to have a marked improvement on speech clarity, and also have added benefits of being water-resistant, significantly reducing feedback, and cutting out wind noise. However, within an hour of leaving my audiologists office, I knew they weren't going to work for me. It basically sounded like I had cotton in my ears AND a horrible head cold. It was fun for about 2 seconds to realize I could hear things like people talking two rooms over, but not at the expense of being able to function. Back to the drawing board.

Today, I was fitted with yet another kind. These are the Unitron Digital BTE with volume control. As soon as my audiologist put them in, I already knew that they were 1000 times better than the oh-so-special Naida ones (seriously, for $2000 a piece you think they'd be better!!) Anyhow, we did a little tweaking, I went and ran some errands and hung out at home and then went back for some minor changes. Now I am going to try them for a few days.

Its always frustrating, challenging and hard to get used to new hearing aids. Even if they are "better" the changes in sounds, frequencies, hearing things I didn't hear before, and getting used to how different people's voices sound is tiring. On one hand its exciting, because it IS an improved quality of hearing, even if its hard to pick up on the improvements immediately. I know I have to go with the flow and just test them out for more than a few hours. So far...

The Good
* Clear sounds, improved volume without excessive feedback
* Seem to do okay understanding speech, though I haven't talked to anyone but my audiologist and my 2 year old!
* Am picking up sounds I previously didn't, such as the clicking of my turn signals or the clicking of the keyboard
* Very similar programming as my old ones--regular setting, noisy situation setting, and telephone setting (also an "auto" setting, but I'll get to that in a minute...)
* Cost - I totally forgot to ask but I figure they can't be any more than the Naida, right? We were prepared to use our home equity line of credit for that, so I figure it will be the same with these. Who knows maybe they'll be significantly less?? Doubtful...

Now, The Bad
* The volume is a little unnerving. I mean, I have always been one to crank it up as loud as I can, but this is sort of...almost too loud, where certain sounds have almost a vibrato or trilling effect. My audiologist lowered the volume a bit but said that may just be something I have to get used to. I have already noticed it a lot less this afternoon.
* The "auto" setting is supposed to automatically adjust to noisy situations on its own. Um, I hate this. I have tried these settings before and hated them. I don't like my hearing aids changing setting because a loud car happens to go by the house for 1 second. I prefer to change it myself. Fortunatley, my aud. made it so that I also have a regular setting in which it won't change.
* Music. WTF. Put on my favorite CD and it was like, warped, garbled, sounded awful. I would not have recgonized the song had it not been displayed on the dashboard. The only thing I can figure is because the hearing aid is supposed to clarify and amplify speech, and reduce background, maybe the combination of singing and music is screwing with it?? Must ask.
* One other thing...since the volume is louder, the hearing aid automatically like, lowers for a second when loud noises occur (like a door slamming, child screaming at the top of his lungs, car backfiring, etc. I think this is to keep you from being overwhelmed by sound, but I don't like it AT ALL. She lessened the severity of it of for me, but its like, if someone slams a door everything goes quiet for a split second.

Anyhow...I'm heading to my parents house for 4 days to run yardsale for my mom, so I'll be in a comfortable environment to test them out - one I'm familar with but without being TOO familiar. Oh and I am going out tonight with the girls from my "mommy group" so that will be another good opportunity. Also testing out a new push-up bra to see if it can stay in place for more than 5 minutes. Here's hoping both endeavors are successful!!!

Do's and Don't

Being deaf or hard of hearing means that just about every and any situation you can possibly encounter will be compromised or challenged in some way. I never realized how often I adjust myself because of this...when you really start to think about it, its crazy how many little significant factors can change the course of communication from successful to frustrating to impossible. So I thought I'd make a list of things to do to make communication with a deaf or HOH person easier. Of course, some of these things might be specific to just me, but I'm willing to bet there are a lot of them that are common themes...

1. When riding in a car together, let the HOH person ride shotgun. Especially if there are other people in the car. Now, obviously, a long road trip or the daily mundane husband-and-wife driving (grocery store, etc) can be excluded from this. But in general, a HOH person must look at you to understand what you are saying, and this is really, really, really hard to do while driving. It's even harder to do in the backseat. Riding shotgun means you can look at the driver, or angle yourself to look at the people in the back. Of course, this all goes to shit at night, but for the most part this is the most comfortable seat for the HOH person.

2. Do not shout at the HOH person. Trust me, nothing makes me feel like less of a person than being shouted at. As with many people who have a complicated hearing loss, raising the volume isn't going to do much anyhow, and in a lot of cases makes understanding speech more difficult. I'm not saying whisper...just speak in a normal, clear, voice...and make sure you are facing the person. Shouting is nothing if not insulting.

3. Consider background noise. A lot of people don't even think twice about something like a fan running, the television on, music blaring at a party, or the radio blasting in the car. For me, it makes trying to talk to someone infintely more difficult. I do have settings on my hearing aids intended to blockout background noise, and these work well in cars, bars, restaurants, and shopping malls and the like. In a situation like hanging out at someone's house, the simple act of turning the music or television to a soft level (or preferably off) can infinitely improve the situation.

4. Lighting is a factor. Bet you didn't know that, but since HOH people rely so heavily on vision (reading lips, noting visual cues, etc) even the littlest bit of visual distraction is, well, distracting. For example, allow the HOH person to sit with their back to the light or window, which will cast the light onto YOUR face. This is one of those things that seems so insignificant...yet makes such a big difference.

5. Outdoor lighting is key. Going along with #4, there is nothing worse than sitting outside on a summer night and having to basically withdraw from conversation after the sun goes down. Campfires, patio lights, etc can alleviate this problem, but a lot of people are totally against turning on a porch light for some reason. But if you're hanging out with me, try to to remember that if I can't see your face, everything you say is just going to sound like mumble-jumble.

6. Water is not my friend. Going swimming, to a pool, on a boat, etc is a major cause of stress. Do I take my hearing aids out and just wing it (I can read lips, but without my hearing aids its much harder) or do I leave them in and hope no one (a) pushes me into the pool (b) splashes (yeah right!) or (c) needs to be rescued from drowning. This scenario is really tough because I do love the water. This stress has only increased since having a kid. I don't want to deny him summers at the pool or swimming lessons...but how do I do that with him without either taking out my hearing aids (i.e. not safe in my opinion when I'm in charge of my child!) or just not exposing him to the water??

7. The phone is out. I think this is an area that is different for each individual, but for me, I really don't talk on the phone. I talk to my husband, mom, or sister RARELY, and these are people who's voices I know well and who know how to have a conversation and get the information across. But in general--I cannot understand people on the phone. This is really frustrating when things can't be done online, or something requires a phone call from ME personally, such as with banking or insurance--they don't care when my husband says he's calling for me, they can't do whatever it is I need unless I speak to them personally. This involves a lot of driving, which is a pain in the butt. I generally drive somewhere to make an appointment if for some reason my husband can't do it for me and I can't do it online. Anyhow...all I'm saying here is don't ask your HOH friend or family member to order a pizza. Don't say "Call me tomorrow!" In this day and age of texting, email, iphones, facebook and more there should rarely be an instance where a HOH person is forced to use the phone...

These are just a few little idiosyncracies that can either make or break how something goes for me. Just today, for example. At the pharmacy where I get my perscriptions filled, they have a very simple automated answering service, where basically all you have to do is plug in your prescription number, name, and phone number and that's it. My husband coached me on the prompts and I know it by heart...first they ask if you want to fill a script--press 1 for yes. Then, enter your script number. Then, are the first three letters of your last name...press 1 for yes. Then confirm your phone number. Easy peasy.

Except today, a live person answered!! WTF. So I figured I'd wing it but of course after the first question "Do you know your perscription number?" I could not understand anything she said. I asked her to repeat herself and she did the usual scream-into-the-phone-annoyingly thing that people do. Embarrassed and frustrated, I said I'd have to call back. What that really means is, I'll just drive to the pharmacy tomorrow to fill it. And of course get the friendly "If you call ahead, you don't have to wait!" reminder.

This isn't really a situation which can be alleviated or controlled, just an example of something frustrating in my daily life.

And, if you're wondering about the "fabulous" part of this blog...um, I haven't really gotten to that yet! But its coming, promise.

Aches and Pains

I am currently dealing with an ongoing problem of sores inside of my ear. These sores generally appear in a cyclic fashion...first an irritating bruise-like feeling, then an open wound that sometimes bleeds, next the scab that can either revert to the bleeding stage, and finally the callous which is irritating but at least not painful.

These sores are caused by irritation from the hearing aid mold. The only real way to prevent them is to not wear the hearing aid for an extended period of time. This is (a) frustrating (b) exhausting and (c) impractical. I have molds that are very tightly fit, because I have a huge problem with feedback, and always have. My ENT suggested looser molds...which means more feedback...which means irritating everyone around me or lowering the volume to uncomfortable levels. None of these options appeals to me.

So I simply deal with the sores. I use a steriod cream to heal them, and sometimes Aquaphor helps as well. It generally takes a few weeks to clear up...just in time for another!! Repeatedly taking my aids out and putting them in (for a doctor appointment, or going swimming--which I rarely do--or if I want to lay down during the day) seems to spur these sores. Once in a great while the sores can lead to a bacterial infection (read...very, very insanely painful ear infection!!!) When I was in the hospital having my son I was repeatedly asked to remove my aids for the ear thermometer...despite asking if I could be temped orally. When my son was 6 days old I had a massive infection which swelled my ear shut. Not only was this excruciating (and remember, I'd just blown out my vagina delivering a child, and my register for pain was pretty high) but it meant struggling for the next 2 weeks with just one hearing aid, in the ear that I have less clarity in. All during the first 2 weeks home with a newborn (read: getting up every 2 hours, attempting to function with visitors and doctors appointments, and running on about 3 hours of sleep a day!!) Then add trying to function auditorally on an already exhausted brain...but I digress.

Anyhow, these sores may seem like...not a big deal. My ENT certainly doesn't think they are, and his no-nonsense attitude is basically, "leave the hearing out." I do my best, but its just one of many, many little idiosyncratic details that effect everything in my life.

Introduction

I am starting this blog because I think its time for me to start expressing myself about my hearing loss. After all, I'm 30 years old. I'm also a stay-at-home mom who is really starting to face the fact that I am deaf and basically, that this one simple fact has a ripple effect on everything--and I do mean everything--in my life.

I'm not sure where this blog will take me, but it is going to be a place to write about my feelings about my loss, share the immense difficulties of going through life with the "hidden disability" that hearing loss is. I am probably not going to share this with my friends and family just yet. I have pretty much spent the last 26 years denying my loss, to myself and to others. I have opened up about it more in the last decade, but its still a touchy subject, one fraught with raw emotion that is comparable to a gaping wound. I have spent my whole life insisting that I am not different, that I can do everything everyone else can, and ultimately at the same time feeling like I am less of a person because I can't hear.

I hope to use this blog to share, vent, educate, and possibly gather a group of readers. I know, that's contradictory to what I just said about not sharing with the people I love, but that will come in time.

A little more about me...I am a writer, and my life goal is to write a book. I have started many...procrastination is one of my flaws. I often think I should just write a memior about being hard of hearing...but then I feel...I can't. I can't share those feelings. I don't want people to know how much it cuts into my entire being. And yet...here I am blogging!!

I am not interested in a Cochlear implant for several reasons. They are shallow and not-shallow. I don't want my head cut open. I don't want to wear wires for all the world to see (yes, I know hearing aids are visible to all the world too, but I am used to that.) I am terrified that it wouldn't work. I am afraid of putting all my hope into it and then...being disapointed. More realistically, having been HOH for most of my life, the rehabilitation part of the procedure sounds long and daunting...and virtually impossible to fit into my life as a wife and mom. I don't feel that I'd have enough actual support...not that I don't have people who are supportive, but the idea of having to take a year off doesn't really appeal to me.

I am also not interested in the "deaf culture". For me, this seems like you are basically taking your loss and making it your whole identity...and I do not want that. I want to be fabulous in spite of my loss, not because of it. I know this is not the popular opinion of deaf people.

At the same time...I want to take more charge of my hearing loss. I don't want to settle for "just okay" if there is something better. I don't want to suffer in silence anymore, no pun intended!!

I will probably start to post on this blog more frequently, and hope that by doing so I can network with other people who share my feelings and struggles.