Thursday, July 30, 2009

The Beauty of Sleep...

I suppose if I'm going to be truly honest about being deaf, one upside would be sleeping. When I sleep, as I imagine most people who wear hearing aids do, I take them out. Several reasons: one, gives my ears a physical break from having something shoved in them all the time, two its not really comfortable if you are sleeping on your side, and three, entering into silence is highly conducive to a good night's sleep.

I wouldn't say I'm a "good" sleeper but I definitely don't have to worry about being woken up by noise. I don't hear other people talking and getting up to go to the bathroom, the dog snoring or jingling his collar, rain, the baby, or any of the other wonderful little noises that wake people up at night. The only sound that wakes me up are heavy, booming ones, such as heavy thunder, the dog barking if he's right next to me, or my husband knocking something over as he fumbles in the dark.

Why is he fumbling in the dark? Mainly because a downside to sleeping in silence is that just about any change in light will wake me up.

There was a brief time when our son was born that I insisted on sleeping with at least one hearing aid in. This led to a massive ear infection (basically every time I woke up, I would take 1 aid out and pop the other in, allowing me sleep on my side without irritation.) But the constant taking in and out led to a different type of irritation which led to an incredibly painful ear infection. And my husband pointed out he could just nudge me when the baby started crying. Of course, whereas I bolted to life as soon as I heard the slightest whimper from the bassinet, my husband didn't awaken until the baby was in full-fledged crying mode. And boy, you should see him now, two years later. He, like husbands all over the world, can sleep through just about any level of crying. Fortunately our kid is a great sleeper and there are very few nights that he actually does wake up crying.

(As a side note, while pregnant I searched in vain for a baby monitor that was similar to my alarm clock---something that vibrated that I could put under my pillow or strap to my wrist. The problem I found was that all sounds caused vibration, including the road noise from outside the baby's window. I would love to know if anyone out there ever found a baby monitor that works...)

ANYHOW, I was reminded last weekend of how nice it is to slip into complete silence for sleeping. We attended a wedding/high school reunion type event for my husband, and opened our home to another couple (one that he knew, I did not.) Of course, my husband (having had a few too many cocktails) was a bit loud when we came home and our son woke up. As I was the designated driver for the evening, I was also the designated take-care-of-the-baby-if-he-wakes-up person. Like I said, this doesn't happen often, but when it does...

Holy crap. Took about 3 hours to get him down (normally I'd let him cry it out, but we had guests and I didn't want to keep them up). I tried bringing him in our bed, which was an utter fail since he thought it was one big pajama party. I was kicked in the stomach, had little fingers shoved up my nose, and was assulted by a stuffed duck and a pacifier. Finally I threw him back in his crib and he mercifully went to sleep.

Since his last act of fun before being banished was straddling my sleeping (er, passed out!!) husband like a pony and jumping up and down, I decided it would be in everyone's best interest if I slept with a hearing aid in, since I didn't think after 3 hours awake I was going to just "wake up" at 7am. Man, what torture. Between my husband's snoring, the baby's murmurings, and the outside noises, it took me FOREVER to fall asleep. Then, all too soon 7a.m. came, but instead of being awakened by the little man, I was awakened to the sounds of doors opening and shutting as our guests prepared to leave. UGH.

So, all of this in a roundabout way to say: I guess there is ONE upside to having this problem...wonderful sleep!!!! If only it was also a cure for insomnia...but that's another topic for another day!

Friday, July 17, 2009

About Me

Wow in the space of a few days I have actual people reading this and COMMENTS!! I think my general hope for this blog is to connect with people who have a similar loss to mine and who share similar feelings, struggles, and challenges as I do.

To be honest, being that it is summertime, I haven't had the time to peruse blogs and write as much as I want to. And, unlike my personal blog which is full of information about me, my family, and our life together, this blog is mainly to express and spotlight just one facet of who I am--a deaf/HOH individual.

So I thought I would make a list of tidbits about myself that have nothing to do with my disability. I am up VERY early today...leaving for a weekend with family and friends in the mountains, and I'm as packed as I can possibly be until my little boy gets up! So, here goes...

1. I am (almost) 31 years old.

2. I am short, and relatively fit, though I feel I will always struggle with my body image.

3. I have 1 sister who is 28, a physician's assistant as of this August, and probably the person I am the closest to.

4. She lives in North Carolina, which is 8 hours from Pennsylvania, where I live. This sucks.

5. I have been married for nearly 4 years, and my husband and I have been together for 9.

6. I have 1 son who is the light of my life. He just turned 2 last week.

7. Being a mom is the best thing in the WHOLE world. If only it didn't go so fast.

8. I would like a second child, but at the same time I wrestle with the idea of being a family of 3.

9. I graduated with a degree in Mass Communications, but spent all of my post-college working years as a veterinary technician.

10. I absolutlely loved my profession and place of employment. Truly some of the best years of my life were spent there. I think, however, that I will persue another venture whenever I'm doing being a stay-at-home mom, mainly because my most recent place of employment was terrible, and there are very few GOOD vet hospitals around here. After working with the best its hard to go down a level.

11. It goes without saying that I love animals...and yet I'm married to someone who could live without them. So, we have 1 dog and 1 cat, and will probably never have another cat after this one passes. I will always, always have a dog, however.

12. I live in a big, beautiful house on 10 acres of woods. It is our "dream house". Its a lot of work and probably has made us a bit house-poor but its a HOME and not just a house.

13. I am very blessed to have an awesome family. My parents, sister, and many extended relatives are all wonderful.

14. I am also very blessed to have a large number of close friends. I have high school friends, college friends, old family friends, post-college friends, and new friends...and I wouldn't trade any of them for the world. I love meeting people and feel that everyone has something to offer.

15. The best day of my life (until my son was born) was my wedding day. Aside from marrying my husband of course, ALL of the above mentioned people came together, for us. It was cathartic to see my father meet my mentor/boss, or to see my old high school BFF doing shots with my friends from Philly.

16. I am incredibly nostalgic.

17. I have several creative passions...writing is one. Photography is another. I would really like to have the motivation someday to turn one of these "hobbies" into something financially lucrative!

18. I grew up riding horses. I was never a "horse person" and probably won't ever be one of those women who begs her husband for a horse (as my mom was!!) but it was an experience I will never regret.

19. I have lived in Pennsylvania all my life, but I love to travel. My husband and I have been to Montana three times--mainly because my high school friends ended up out there. We quickly fell in love and in a perfect world, would probably live there too. Except for the long winters.

20. I hate winter. This is unfortunate, since we live in the base of the Poconos.

21. I love summer, living things, outdoors, hiking, fresh air, campfires...basically anything summer and outside, I love.

22. I started running 1.5 years ago, in attempt to lose more baby weight. I have learned that (a) you can come to love something you previously hated (b) loose skin sadly does not evaporate and (c) That I have the desire to run a 5k. It would probably help if I continued my running in the colder months, but that just isn't do-able with a 2 year old!

23. I don't really cook, but have lately been tapping into my domestic side. I've been spoiled by a husband who is a phenomenal cook...but 2 years of working and coming home to cook are taking its I feel dinner is going to be my responsibility sooner rather than later!

24. I never thought I would be into gardening, but I am!

25. My favorite time of day is early morning. I love the quiet time of me, my coffee, and my laptop (or me, my dog, and a stroller-free run) and feel my most energized, refreshed, and creative...

Friday, July 10, 2009

Just Some Thoughts...

As suspected, there are no Perseos out there to be had. I should have known better than to be hopeful. But, I'm still thankful for the effort by a total stranger.

I recently read something by another blogger about the discrepencies between deaf and hard of hearing individuals who categorize themselves either in the Deaf Culture, or in the hearing world. The particular article I was reading (and I didn't bookmark it, so I have nothing to reference here) said something along the lines of "If you are deaf or HOH and think you can be part of the hearing world, you're kidding yourself. You will never be one of them."

This statement offended me. My entire life I have been told I can do whatever I want to do. Now, of course, as an adult I realize that's not exactly true. I couldn't be a soldier, fly a plane, or be a telephone operator...or lots of other things, in reality. But then again, just because you have perfect hearing doesn't mean you can be an astronaut just because you really want to. But I'm on a tangent here.

Anyhow, I have never been a fan of the deaf culture and I will tell you why, but first, a disclaimer. I have nothing AGAINST those individuals, only that it seems they look down upon people like me, people who strive and struggle to get through life HOH in a hearing-centric world. I do NOT want to embrace my deafness as the main thing that defines me, and I think that is okay. There are so many other facets about me as a person that make up who I am, along with having a disability. Not because of it.

That being said, in so many ways I am NOT a part of the hearing world. For example...movies on planes. No good to me b/c I can't stick the earphones in my ears, and there are no captions anyhow. Drive throughs are completely off, and its rare that I can order something in a restaurant without having to ask someone to repeat themselves at least once. Swimming. No fun for me, because I have to take my hearing aids out, or sit on the edge of the pool and stress that someone will splash me or push me in, or sit far away from the pool and feel anti-social.

There are so, so, so many times in a group of people when everyone is chatting and talking and I am just smiling and laughing and have no clue what's going on. People who know me well know this, and may turn to me at a certain point to enlighten me to the joke, but the general feeling is that I am a kid hanging out with a bunch of grown-ups and I don't get the punchline. With people who DONT know me as well, the assumtion is that I just have nothing to add to the conversation or that I am "quiet", which is totally not true!! In high school and college I completely played the persona of the dumb blonde because it explained how I never knew what was going on. I often, even with my best friends, feel that I am on the outside looking in. Like I will never be as close to them as I could, simply because of all the things I miss.

I don't know, just some thoughts...

Monday, July 6, 2009

Maybe A Little Hope?

This morning I received an email from my local audiologist promising me she hadn't forgotten about me, and she was desperately trying to find some type of hearing aid that is comprable to what I have.

On a whim, I emailed the author of a blog called The Hearing Corner. During my research I came across his blog and I liked the way that he wrote. He is an audiologist in Florida who seems to take a lot of pride in his work of helping people, in particular challenging cases. On a whim I emailed him my situation. In the space of 6 hours we have corresponded back and forth 2 times and he has already contacted someone at Phonak about trying to find a pair of Perseos for me. He is also a big Naida fan, so in the event locating Perseos doesn't happen (and to be honest, I have no illusions that it will) I may try to find someone more knowledgable with the Naida.

In any event, if I actually do have readers, head on over to his page. Interesting and uplifting. In addition, the quickness and eagerness of his response to a random email reassures me of the good in the world, or something like that. And who knows...maybe there is something out there for me after all...

Saturday, July 4, 2009

Still Frustrated...

I haven't really written much lately because there isn't much to report. I am at a stalemate of sorts in the quest to find new hearing aids. My local audiologist seems at a loss as to what to try next, and my personal belief is that she doesn't have a lot of experience...I get the feeling a lot of her patients are elderly people. My previous audiologist seems incredibly difficult to get ahold of. But I wonder if trying something like the Naida with her doing the adjustements (as she has a much larger client base and most likely more experience) might not be worth the effort? And, effort it would be...a 30 minute drive, I would NOT be able to bring my son with me (which, frankly is for the best but going to be pretty difficult to find someone to watch him for a long period of time in the middle of the workday) and there would be no running back to the office for a quick adjustment.

The benefits of the local audi are that she is EXTREMELY accomodating, both to fitting me in for whatever I need and sensitive to the fact that I have a 2 year old and can't always drop him off at my husband's work or have a babysitter.

When I last left it, I was leaving for vacation. She was going to look into a Seimans and an Oticon model for me to try, and I told her I'd contact her when I returned. I did, and also let her know I seem to be unable to reach my old audi via email. I asked if she would be willing to call her for consultation purposes and ask for any recommendations. This was over a week ago, and I still have not heard back from her!!!!!!!!!!!!!!!!!!

Serious frustrations, but I'm trying not to stress or let it ruin my summer. My husband and I are discussing another baby and decided to wait 1 more year. For him, this was because of just not being ready. For me, the top burner thought was "I need to figure out this situation before having another baby." Nice huh. I started looking into getting new aids IN MARCH. It should NOT be 4 months later with no success!!

Thursday, May 28, 2009

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???

Tuesday, May 26, 2009

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 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