Eight months of HOH mommy-hood--- draft that never posted

My baby girl is turning eight months old tomorrow. I can't believe it! Her personality is just starting to shine through. Her grins and giggles that expose her two itty-bitty teeth melt my heart. Along my brief but ongoing journey in motherhood, I've learned so much about myself. Some of what I have learned thus far pertains directly to my hearing loss. Ella has never been a huge crier, fortunately. However, when Ella was about 4 months old the volume and intensity of her cry changed dramatically in a period that seemed overnight. With that came a whole new irritant for my aided ears. Her cry made my hearing aids attempt to compress the sound. See, the higher frequencies are the ones I can't hear unaided. My hearing aids try to amplify these loud enough for me to hear them. However, if the sound present is a high frequency but already pretty loud on it's own, the hearing aid amplifies it but quickly responds and tries to compress it to a level that prevents further damage to my ears. This results in a very loud, distorted noise that I can't accurately describe. It's like static but far more loud and annoying. This phenomenon is not new. Never before, though, has the source of such an irritant been someone I love as much as my baby.

18 months later as a HOH mom

A busy 18 months of mommyhood has kept me away from this blog. I thought it was time to revisit :-). My greatest challenge and greatest joy are one and the same: my daughter Ella. While everything about first-time mommyhood is brand-new and often terrifying, I am now seeing Ella's personality blossom and know that I was simply born to be her mom. My hearing loss has added an additional hurdle at times to mommyhood thus far. Most notably, I had thought that a baby monitor was super necessary and I even researched about and purchased one that vibrated for those times when I would be aid-less. It became very apparent after the first couple weeks of use that it was not going to work for my purposes. In order to hear it, I would have to have the volume at a level that my husband couldn't tolerate. He said he could hear her breathing and it was interrupting his sleep. So, slowly, I began to trust my hubby to be my monitor for those rare times when I wouldn't hear Ella. Remarkably, despite my hearing loss, I somehow rarely miss her cries. It sounds cliche but it's as if I gained a sixth sense when I became a mother. I had some issues, however, with the volume of baby cries and noises. I suffer from hyperacusis which has always made some noises particularly bothersome but until I became a parent I could take steps to eradicate those noises that bothered me. In the case of loud, crying baby, that was not an option. I had to find new ways of coping to my noise sensitivity which took some adjustment. I have become a huge fan of my hearing aids' mute button. Previous models of aids I have owned had required the complete removal of my aids from my ear and then the removal of the battery for a complete off mode. These new aids (as in the ones I have had for about 3 years now) have a mute setting so a push of a button turns them both off. I didn't realize how crazy invaluable something like this option was until Ella arrived and even later, when she began screaming and screeching just for fun :-). As I had imagined, wearing hearing aids while administering a bath has gradually become impossible. Ella has taken to splashing water as she's entered toddlerhood. I have to remove the hearing aids and generally just keep them out through the entire bedtime routine. It actually makes me enjoy the cuddling more when I use all my other senses and read to her without my aids on. I can't really explain what I mean. I just allow myself to tune out the world at the end of each day with her. There was a brief period where Ella "discovered" Mommy's aids in her ears. This was quite the challenge. There's nothing like the tenacity of a curious baby. First, her little hands coming near my aids would cause feedback or loud squealing from the speakers. It would bother me tremendously as it always has but it would also startle her, initially. Slowly, she became kind of fascinated with the cause and effect of this little game. She also desperately wanted to pull them out to inspect them. Fortunately, with patience that I mustered up from somewhere deep within, I got used to the game just in time for her to realize the aids are always there and lose interest altogether. I have had a severe anxiety associated with my hearing aid batteries and Ella. I still do, even more so now that she can easily reach, climb and rummage through the majority of our house and belongings. I am trying to find good hiding places for my aids in my car and house. I have stopped carrying any in my purse as my purse is now one of Ella's favorite things to empty. I think the chance of Ella swallowing my aid batteries will be a huge source of fear for me probably until she's moved out of the house. No joke. Ella and I took a series of baby sign language classes when she was an infant. She now utilizes several signs and recognizes dozens more. She really enjoys it and I do, too. Her speech is usually clear when she is saying actual words but I know that signs do fill in the gap when I can't hear what she's saying the first or second time. I do wonder how much of my insistence on sign was in someway selfish but it's working for us. I had a really sensitive moment with a friend of a friend recently. I was just having one of those insane weeks everyone has from time to time where it seems everything is going wrong and nothing is working the way it should. I was particularly raw going into our conversation about our insecurities as moms. Hard-of-hearing or not, moms have plenty of them and they are often very similar. Then, I brought up my insecurity about being a hard-of-hearing mom. How my disability will affect Ella? Will it frustrate her or make her feel different than her peers? My friend's friend said something so simple and she said it with such an honest heart. She immediately told me that she thought my hearing loss would be an asset for Ella. I was already in need of a good cry so naturally, that is what finally got the tears flowing. I hope she's right. I hope it for my daughter's sake. I think the more I accept my loss the more it has the potential to be an asset for my daughter. And, for that reason, I soldier on and continue to embrace it for what is, a small part of who I am as both a person and a mother.

Hard of Hearing Mom-hood

It's been some time since I last wrote. I'm now 30+ weeks pregnant with a baby girl to be named Ella. It's been a relatively easy and uncomplicated pregnancy. I feel tremendously blessed. I'm so excited that I rarely give much thought to what it will be like to be a hard of hearing mother but when I do, I try to focus less on my frustration that I have hearing loss and more on how I can adapt as a mother. Fortunately, with a little research, I've discovered some baby monitors have a vibrating feature. According to some threads I have seen online, a model by Graco appears to be the go-to for hearing-impaired moms. I think this will be a life-saver particularly at night when I'm unaided. Of course, I could turn the volume up to the highest level on the monitor to help wake me but I have to consider my hearing hubby trying to sleep next to me. I also live in a condo complex and no doubt my neighbors won't appreciate hearing Ella in stereo. So, the vibrating option is fabulous. I'll be placing it right by my head and hopefully, we'll all be happy with the result. I am really eager to see this plan in action and whether it really is as useful as I expect. What's been really interesting, too, has been reading up on other HOH moms experiences. For example, it's a relief to read posts by the Lipreading Mom. If blogger Shanna Groves, a severely hard of hearing mom can successfully raise her three kids and all with a sense of humor, then it gives me additional hope I can do the same as Ella's mom. As a member of the national Hearing Loss Association of America, which is a great resource for all ages facing hearing loss, I get their monthly magazine. Before I was even trying to get pregnancy I read a poignant article written by the wife of a severely hard of hearing man. They have a family. One of the stories she relayed to readers hit home. Apparently, they both attended their child's parent-teacher conference. There, the teacher jokingly (albeit, her words may have stung, despite the joking tone) told them that meeting the HOH father made her understand why their son spoke so loudly. I do have this concern for Ella. She will undoubtedly need to learn how to be patient with her hard-of-hearing mom when I don't respond right away to her voice or when I'll ask her to repeat herself more than once. But, eventually, she'll probably adapt as she won't know any different. What may be a bigger challenge for her will be to understand intellectually that Mom is different than everyone else and has different communication needs. I do wonder if she'll be a loud kid. As a youngster will she not be able identify when it's necessary for her to adjust her behavior based on a specific situation or the company she's in? My greatest hope for her is that she never feels different because she has a hard-of-hearing mom. That may be a little unrealistic but a girl can wish. I have had some ringing in my ears since I got pregnant and suspect a particularly bad few days of fullness in the ears was in fact another episode of AIED. I chose not to go to my audiologist and ENT because of the pregnancy. My reasoning: if it was AIED the intertympanic steroid shots would be even more uncomfortable than while I wasn't pregnant and there could always be a potential for passing trace amounts of steroids to Ella. But, I do wonder, post-pregnancy, how my AIED will progress and how it might impact my relationship with my daughter. The fluctuation in my hearing will no doubt confuse her. With each episode, I've become more aware of the signs and my reaction but that doesn't mean I don't still get agitated while in the middle of one. I hope I can continue to learn how adapt to these episodes so as not to let my frustration about them infiltrate my parenting. Ella won't understand that Mom is agitated not by her but something else beyond our control. I've also been considering the smaller things I might need to do differently once Ella arrives. Right now, I have a tendency to toss batteries in my purse, my car and other random locations. While Ella's little, I will have to hide my hearing aid batteries to avoid the risk of ingestion. I think it might also be necessary to take my hearing aids out when I bathe her as a baby so her potential splashing doesn't break Mommy's aids. I think it's really important that I also get Ella and I involved in the baby sign language classes that have become so popular. It will no doubt be a very important tool for us. Until she's able to enunciate clearly and she's using a clear confident tone that Mommy can hear more easily, I think we'll need a fallback way of communicating. Sign will bridge the gap, I suspect. I will always encourage her to use her words too but it may be helpful for us both to sign and talk at the same time so we can understand each other. I am looking forward to the gift of motherhood and conquering my hearing loss in new uncharted ways. I simply can't wait to meet my munchkin!

Intertympanic Shots: 3 down, 1 more to go

Last week, I got the news that my latest AIED tinnitus episode had caused a 20 dB loss at 1000 Hz in my left ear. I'm only down to 30 dB in that frequency which is categorized as a mild hearing loss. What's noteworthy, though, is that I was hearing at 0 dB at 1000 Hz in the left ear just 10 months ago. Knowing this, I had my audiologist take a look at my audiograms collectively since I became her patient. It was clear to us both that my once good ear had been nosediving since January (post oral steroids treatment which as I note in previous posts was totally unsuccessful and caused severe insomnia, mood swings and depression.) My ENT was confident that intertympanic steroid shots would not have the same systemic effect and could be more effective in combating my tinnitus and hearing loss during an actual episode. With that, I had my first shot on Nov. 2nd.

The whole process takes less than a minute but as the injection goes in it causes intense vertigo, which is well-documented so they inject you lying down. Post-injection it feels like your ear is full and, at least after the first injection, my ear burned like someone had boxed me in the ear. In order for the inner ear to absorb the prednisone, a patient has to lie on their opposite side and wait for gravity to take effect. It's weird because your ear feels as if it's acting as a suction cup. You hear some weird suction-type sounds, too. Perhaps the most awkward thing about the post-injection period: you have to lay there for 30 minutes without talking or swallowing. Translation: spit into tissues for a half hour so as not to swallow your own saliva.

The whole experience the first time around made me wary about continuing with the three other injections the doctor prescribed. Fortunately, shot #2 five days later was alot less painful. And, finally, about a day after that injection, I awoke to no tinnitus for the first time in a week. With my spirits lifted, I had my third shot done yesterday. Again, it was less uncomfortable than it had been in the previous two visits. My final shot is scheduled for Monday.

It will be intriguing to see if my hearing rebounds at all from the treatment. As far as I am concerned, I've noticed it's been easier to chat on the phone than it was during the episode and I'm overall not as tired because I don't feel like I'm struggling like I was. Should there still be some permanent loss sustained by this latest episode, though, I will once again be that annoying patient who advocates for herself and ask for another hearing aid adjustment.

It's been about 8 months or so now since I've gotten my Exelias and I now fully understand and value the fact that getting the best amplification possible totally transforms my life and affects everything from my energy level to my mood. As long as my ears can benefit from amplification, I will be that patient that's constantly fine-tuning her aids to fit her fluctuating loss. Sometimes it feels like I am running after this hearing loss trying desperately to catch up to it and be the best hearing person I can be. I can't say that it's not exhausting sometimes but at least I have finally embraced it. There's a peace about it now that I never had. I hope it keeps.

Tinnitus, I wish I could say I hardly knew ya!

My doctors think I have a vague illness called autoimmune disease of the inner ear. AIED includes asymmetrical, progressive hearing loss and can cause tinnitus and vertigo. Fortunately, I am vertigo-free but I do get tinnitus. A couple months ago I had my worst bout of tinnitus (in my case, my tinnitus is sustained ringing in my ear, sometimes pulsating, sometimes not). The episode lasted a full week and I sustained a 10 dB loss in my left ear at 1000 Hz. That loss wasn't enough to cause too much alarm, fortunately. Now, just when I was hoping that episode was just a weird phenomenon, I'm on day 3 of my latest bout of tinnitus. I am headed to the ENT and audiologist this afternoon. My ENT has told me that each bout needs to be analyzed and my hearing tested. If there is a 20 dB decrease in any frequency, an inter-tympanic shot of prednisone might be worthwhile. IT shots mean a shot into my eardrum. Prednisone is a steroid. Never thought I would be "pumping up" my ears. But, apparently, if a prednisone IT shot is warranted, it can often stop an episode and possibly restore any hearing lost during that episode. I am a little squeamish at the idea but now that I'm on day 3 of this latest episode, I can honestly say I am DYING for some relief. I'll post the result soon.

Hearing should be a right not a privilege

This is perhaps the most emotional and inspiring video I have ever seen. To me, it showcases the power of good hearing for those of us who lack it. It also makes me so grateful to live in a time when people like her and I can benefit from technological advances in audiology. But, most importantly, it is proof to me that hearing is a right, not a privilege. Not every deaf person wants to become a hearing person. Deaf culture is alive and well. While I myself am not a member of the Deaf community, I got a taste of the pride that community has while taking an ASL class in college. For those who do want to hear though, hearing MUST be a right NOT a privilege. It's widely accepted that every American who has problems with their vision has the right to get the medical care and equipment necessary to see clearly. Why does the same not hold true for the hearing impaired?

Not long ago, when I discovered my hearing loss had progressed, that I was badly under-aided and I needed new hearing equipment, I learned my insurance would not pick up any portion of the tab for my aids. I was furious at the news. I remembered my parents telling me when I was younger that they had to pay out-of-pocket for my BTE (behind-the-ear). Later, I also remember that a new insurance plan my parents had acquired in my teens DID cover aids. That policy allowed me to get my first pricey ITE (in-the-ear). As a youngster, I didn't consider the lack of insurance coverage of hearing equipment an injustice. I didn't fully grasp the expense or how insurance coverage or lack thereof impacted my family. I was fortunate that circumstances allowed me to have the best technology and care.

At 27 years old, though, I needed two new aids (and power aids at that) for the first time in my adult life. I felt so ostracized by "the system." One of the many reasons why I feel blessed for my short stint in audiology school: they pointed me in the direction of the Vocational Rehabilitation program. At first, the idea of asking the state to subsidize my hearing equipment made me incredibly uncomfortable. It took months of struggling with the idea, while reluctantly filling out the paperwork and going to the necessary meetings, before I realized that it was my right to ask for help. If my insurance company was failing me, it was my right to seek other ways to cover the cost of my $6,000 aids. The Voc Rehab program recognized that, too, and that the aids were my tools to gain and retain employment. After approval, it was discovered that Cigna, my insurance company, had recently altered their coverage for hearing aids. Now, they were covering $2,500 in hearing equipment annually! It was a heartening, small step in the right direction. Voc Rehab picked up the remainder of my bill and after months of bureaucracy, I was fit with my Phonak Exelias. The elation I experienced that first day with MY new aids (I had been loaned others, off and on, while waiting for the ones I now call my own) parallels Sarah Churman's in the above video.

In Sarah Churman's case, her implant cost $30,000 just for one ear. She went on Ellen eight days after the above video was shot to tell her story. Her insurance company didn't cover her procedure at all. Her mother-in-law, realizing how important hearing was to Sarah and her young family, selflessly cashed in her retirement fund and paid for Sarah's procedure. Ellen DeGeneres, who I adore, recognized the awful injustice--that a woman could essentially be priced out of a basic right--and worked out an amazing solution to the Churmans' financial situation. She got the company who makes Sarah's implant to agree to reimburse Sarah the $30,000 for her first implant and gave Sarah an additional $30,000 so she could have the procedure done on the other ear. It was a remarkable act of kindness. It also highlighted the growing understanding within the hearing community of the need for change. It gives me hope that one day aids, cochlear implants and medical procedures aimed at restoring one's hearing will no longer be viewed as vanity items but truly medically necessary tools to restore the right to hear to anyone who seeks it. Go Ellen and go Sarah!

Here's the segment on Ellen. Warning: Grab a hanky before viewing!
A Deaf Woman Who Can Finally Hear Meets Ellen

High Energy Thanks to Phonak

I have had a tough couple of weeks with my first pregnancy, miscarriage and D & C. I'm better and hopeful that the next pregnancy, whenever we're blessed again, will be a successful one. But, in the middle of it all, I have fallen in love... with my new Phonak iCom and TVLink. $300 and a little gizmo later and I am full of energy I hardly remember having since my hearing loss took a nosedive.

The iCom and I had a short rendezvous with a FM transmitter in grad school. I wasn't a massive fan of the FM transmitter in those brief few weeks. It really only helped in the classroom but any dynamic situations led to some serious sensory overload. I think my good hearing for in low frequencies in both ears and mids in the left made it just too loud. I did love the iCom, however, when I linked it with my loaned Exelias and my smartphone for hands-free phone calls in the car.

Every time I was without great hearing aids before grad school and using the speakerphone behind the wheel, I struggled to hear and was always fearful of getting pulled over by the cops for breaking the hands-free law. I returned to that frustration when I returned my loaner aids and went back to my own obsolete aids. As soon as I got my Exelias with the bluetooth capability from Voc Rehab, I dreamily hoped to return to easy hands-free calls but worried about the expense. Thankfully, my hubby, whose continued support and patience warms my heart and boggles my mind, recognized how important an iCom would be to my sanity and safety. My audiologist gave me a great deal on the iCom and the TVLink combo and I placed my order.

Now, I think I've fallen more in love with the TVLink than the iCom phone option. The little charging station for the iCom doubles as a wireless link for easy TV viewership when I plug it into either TV in my home. I can now miraculously hear every word on the TV through a signal sent directly to my aids. I can even have the TV on mute and hear the TV through my aids... perfect for late night or early morning viewing!

I am a different person with even more boosted energy than I had once I got properly aided. This little device was the missing link between me and effortless hearing. I feel like I have been released from the loose grips of my hearing loss... I am hardly if ever limited by what I can't hear. Of course, I still occasionally miss something my hearing friends and family might hear but it's not nearly as frustrating to communicate. I don't feel like I am being held back or holding back others in almost all day-to-day situations. The future looks bright!

Here's info on the Phonak iCom and TVLink I am gushing about:


http://www.phonak.com/com/b2c/en/products/accessories/communication/icom/overview.html

Solicitors be gone!

Every American can't stand being hassled by solicitors outside their grocery store or drug store. Sign this to support gay marriage (which I do)! Sign this petition to get this meaningless proposition on the ballot. Or, lately, try out our fledgling salon at a discounted rate--you'll love us! I, like the rest of the world, can't stand being hounded each time I exit, in this case, my local Trader Joe's bogged down with loads of groceries and rushing to get my frozen items home before they melt. But, more than anything, as a hearing impaired person, the auditory stimulation is something I could really do without. I often have no idea who they are speaking to. Is it to me, or the person who left the store right before me. Some, I wouldn't be surprised, could even be talking to themselves.

Then there are those who are a little frustrated by their plight so they talk really softly. What are you saying? If you don't believe in what you are saying, spare me the additional noise.

On the flip side, there are those who practically yell at you with some stupid line they have created to grab your attention. My favorite was just yesterday: "Hey pretty little lady, do you like the environment?" Any time new words or sounds come at me without any context, I have to spend quite a bit of time processing what it is that I am hearing. At first, I was certain I was being picked up by a hobo outside of Ralph's. After some internal processing, I realized what it was he was trying to pitch to me. I told him, "Sorry, these groceries are really heavy." His friend then yells after me, "I'll help you carry them". Seriously?

Then there are other solicitors who simply go "Excuse me Ma'am" usually after I have walked past them and have my back toward them. Of course, that complicates matters... I have trouble hearing anything let alone anything from a source behind me. I have two issues with "Excuse me, Ma'am"... first, I am 27 years old, I am still a Miss (though I am happily married) until I am at least 40. Ma'am is someone with kids and wrinkles forming under her eyes. Once I get over the shock of the Ma'am, I have to check around me, is Ma'am directed at me or the 5 other ladies walking to and from the store? I'm always very disappointed when it's revealed that the "Ma'am" was really directed at me.

I know it would just be better to simply ignore all these sounds and go about my routine. But, it's hard to do that. I am constantly trying to process all the sounds around me. I guess you could say I'm on "high alert" most of the time, particularly in dynamic situations. So, when I heighten my awareness of everything to make sure I'm safe and comprehending important information, the solicitor's voice is always going to show up on my radar. Fortunately, I am becoming more aware of what these people might look like and have come up with my customary excuses. I tend to blurt them out before they have a chance to befuddle my mind with their pitches. But, I have to say, I really get frustrated when these people assume that everyone hears the same way. I am not nearly as hearing impaired as millions of other people are in this world. How frustrating must these same situations be for them?

Hearing Loss is not just for the Elderly

I was watching television the other day when a seemingly harmless commercial came on. It was for the Hamilton Captel, a captioned telephone service I learned about several months ago. The idea is enticing to me as my hearing has made it harder for me to understand people on the phone lately. I was hoping there was something similar for my cell phone. Unfortunately, after doing some research, I discovered the Captel service is unique to Sprint cellphones right now. My service provider is Verizon. I hadn't thought about Captel much since until the commercial appeared on my TV screen.

The 30-second spot for Captel, which I've now seen a number of times much to my dismay, left me really upset. The commercial shows a grandmother using the phone to talk to her grandson. For someone who is hard-of-hearing and not in the stereotypical age group, I couldn't overlook the message it was sending to viewers. Every time I have had to reveal to a customer service person, a professor, a boss or a new acquaintance that I have hearing loss, I am always met with a surprised look. I am not what anyone would think of when asked to describe a hard-of-hearing person. This commercial is broadcasting the misnomer that HOH means old to millions. Nothing good can come of this for the millions of young people like me with compromised hearing.

I know I am not alone in feeling the occasional shame or embarrassment for having a disability believed to be reserved for the elderly. It took me years to even acknowledge that I had an issue and that it might be worthwhile letting those around me know about my hearing loss. Instead, I tried to blend in with my peers and compensate for my disability. It would have been markedly easier to grow up hard-of-hearing if the stereotype hadn't always lurked in the shadows.

I wonder, as more and more people of all age groups are diagnosed with hearing loss, whether the stereotype will fade away. I doubt it but one can only hope. It would be a relief to me and so many like me to not be met with such incredulity and disbelief each and every time we reveal ourselves as hard-of-hearing.

I'm tempted to write to the company and point out that they're excluding a large untapped market by advertising their technology only to the elderly. I'm just not sure what impact such a letter might have because as it stands, it's true that young people are still in the minority in the HOH community. I'm still, by several decades, the youngest member of my local HOH group. Maybe I should just do it anyway?

No more doctors in 2011!

It’s a new year and hopefully a new outlook on life, my hearing included. I went on a prednisone taper last month to treat my apparent autoimmune disease of the inner ear. I was supposed to be on 60mg of it for two weeks and taper down 10mgs every three days. I made it through three weeks of the prescription before I couldn’t take all the side effects anymore (tinnitus, irritability, anxiety and insomnia) and went off of them at the advisement of my doctors. An audiogram revealed that the treatment did not restore my hearing. It was definitely not the outcome I had hoped for and for a while I was full of anger and disappointment. I am trying to pull myself out of that space now and move forward.

While I totally appreciate all the assistance and guidance I received from all the specialists I have been to lately, I have come away with a rather large disdain for being a patient. After all the poking and prodding, we've determined that my blood test that showed possible Lyme disease was in fact a false positive. That was welcome news, of course. We've also learned that because my body didn't respond to the steroids, it may be possible that I may or may not have AIED. It turns out AIED is a very broad explanation for progressive hearing loss. There may be something else going on or I might just not be responsive to the only treatment available for the disease right now. Who knows? All I know is that I am exhausted after all the theorizing and testing. I initially wanted to have answers and in the end it turns out that there are far more question marks associated with my hearing than answers. Fortunately, though, for the time being it has stabilized and the tinnitus I was experiencing on prednisone has subsided (I still have it occasionally but fortunately it's not roaring anymore.) That's another point to highlight: prednisone is often used to reduce tinnitus symptoms, in my case they made it worse. I am a medical paradox. And, now, this paradox is swearing off doctors. Which, let me tell you, is easier said than done.

Every one of my doctors has pushed for followups even after giving me a clean bill of health (the rheumatologist found that I'm completely healthy other than my hearing, fortunately, and yet he still wanted to see me in six months.) I have put my foot down. I am not willing to submit myself to more medical appointments other than those with my audiologist. I am done for now. The limbo that these past few months put me through was more than my soul could handle. I am taking control again.

In the meantime, I am now attending Hearing Loss Association of America local chapter meetings. For the first time in my life, I am meeting dozens of people with hearing loss and while the degrees of our hearing loss may vary we understand one another on a level that no normally-hearing person does.

I am also hoping to get a job soon. I have been on an interview and have applied to a few other positions, too.

When I'm not job-hunting, I am trying to focus on self-care both for my body and my spirit. I have read “The Girl with the Dragon Tattoo” series. I’ve been baking and cooking like crazy. I made maple sugar cookies with pecans twice during the holidays for friends (I snuck a few for myself too) with my Kitchenaid mixer and altered a family recipe for an apple tart to include pears instead (pure heaven on a plate!) I also made a number of my favorite meals for Zack and myself and even my parents and in-laws.

I have also been exercising alot between hot yoga and trips to 24-Hour Fitness in an effort to get more centered again.

I've been knitting a bit, too. Here is my latest creation in progress:




I've since added a wooden handle to the clutch and am now trying to figure out how to insert fabric lining.

This is what I hope for in 2011:

1. Continued health for myself and those I care about
2. I will conquer crow pose in yoga
3. My parents move to the O.C. ends up being as great for them as I hope it will be
4. My hubby and I get to take another fun vacation somewhere in California (Europe will have to wait)

Of course, I also hope I get new hearing aids and a job but fundamentally, I just want to make good memories and grow as a person this year. If I attain these secondary, money-driven goals, I will be just as thankful as I will be when I seethe above list get ticked off one-by-one.

Too soft or too loud and very little in between

I have always been a music lover. My first concert for my 15th birthday was Third Eye Blind. I had memorized all the lyrics to all the songs. Back then, it was possible for me to gather most of the lyrics just by listening. But, over the years, I have slowly sought out the dust jacket or online lyric databases to fill in the gaps for me.

I went through that angry female music fan stage in my early teens too. I loved Alanis Morrisette and Fiona Apple. They both had such resonance in their voices and an amazing ability to create melody. Funny enough, it would take years of listening to them over and over to understand that most of their songs, not just their perspective anthems “You Oughtta Know” and “Criminal” were pretty violent. I still think they are both great artists but I often wonder what my family must have thought when that was all I listened to. I didn’t realize what the subject was all the time. But, I must have behaved as if I did. After all, I would sing those lyrics that I could understand and then mumble the rest. I would bluff my way through a song. But, get me on stage for karaoke to any of the songs I loved during my childhood and I lose my place as I quickly realize what I heard was not what the songwriters had intended.

The first dance on my wedding day was a beautiful song by Chantal Kreviazuk called “Home.” I had carefully picked it out for its beauty and its lyrics. I had listened to it over and over. The day of my wedding, I took that first spin on the dance floor and sang my version of the song. The wedding video showed that my mouth was out of sync with the music. My husband commented on it and suggested it was poor editing. I knew better. I had lost my place in the music that day and couldn’t continue properly. So, I was improvising, trying to mouth the words I could hear.

I guess a lot of times I didn’t know or didn’t want to realize what it was that I couldn’t hear. I distinctly remember a hearing exam at the House Institute in L.A. when I was a teenager. I asked my mom to sit in the booth with me. The audiologist conceded. My mom was sitting directly in front of me as I responded to the tones and words coming from the headphones. They didn’t sound loud or frequent to me but I could tell by the look on my mom’s face that they were both. Slowly, her worry showed on her face as I missed words or failed to respond to a tone. She could hear it while I had headphones on! I was shocked.

Over the last few years, though, changes in my hearing loss have made me more susceptible to hyperacusis. This means that certain sounds are painfully loud to me. It depends on whether I am having a good AIED day or not. It’s never clear what sounds will make me want to jump through the roof. The only consistent sounds that have always bothered me beyond the obvious--background noise--are sirens and any mechanical noises.

My first summer in college, I returned home to L.A. and got a job as a docent at local museum. I loved the public-speaking component. I loved guiding the tours and asking thought-provoking questions of the visitors along the way. But, my most vivid memory has to be the day I unwittingly made a scene over a visitor’s hearing aid.

Toward the very end of the tour, a video would play on a large screen. I had heard it dozens of times and practically knew it by heart. My job was to pose a short question and answer session in that room post-video before taking all the visitors upstairs to the next exhibit. Immediately after the video started to play, I began hearing a persistent, painfully high-pitched squeal. I checked my hearing aid, nope it wasn’t that. I couldn’t identify the source or the direction as usual, but after a couple of minutes I couldn’t take it anymore. I called the I.T. guy on site to come take a look at the speaker system. The I.T. guy came and quickly determined it wasn’t the speakers.

One of the visitors gave me a look and pointed discreetly to an elderly man among the group who I hadn’t noticed. Clear as day, sat two hearing aids, one on each of the man’s ears. I was so embarrassed for him and me. My hearing aid interacts with all kinds of sounds—the microwave going off, the alert signal when I leave my car door ajar, the waves coming from a retail store’s metal detector—but this was the first time I had heard someone else’s feedback through my own aid. Fortunately, for me, the gentleman appeared oblivious that the whole scene was caused by his hearing aids and I quickly led the group upstairs.

What doorbell?

I’ve worked since the day that I was able. I’ve held countless retail jobs before graduating journalism school and taking several jobs in my chosen field. But, before all that, I was the neighborhood babysitter.

Beginning at age 14, I marketed myself. I posted flyers around my new neighborhood. I was determined to make some spending money. Plus, I loved kids. Ever since I can remember, I’ve envisioned being a mom. I never had siblings, but every chance I got, I would befriend younger kids—be it my mom’s friends’ children or my newest baby second cousin. I think I was looking for the companionship as much as I was looking for the cash. Plus, I was never one to sit still. I even printed out pictures of cartoon caricatures that my charges and I could color in with my trusty box of crayons, in case we ran out of things to do. Before you knew it, I was in high demand.

One of the first kids I babysat was an adorable little two-year-old boy named Frankie. We were best buds. As he got older and he became more vocal, I realized I was having a hard time understanding his soft lisp-y voice. I figured it was just because he was shy and he wasn’t speaking up. After all, I was wearing a hearing aid. I had practically normal hearing, right?

One day, while changing his diaper in his room upstairs, he kept telling me someone was knocking on the front door and even ringing the doorbell. I figured he was conning me to get out of a diaper changing. I firmly told him that there was nothing going on at the front door. Frustrated with me but always aiming to please, he fidgeted but stayed quiet while I finished changing him. Once we were done, he insisted we check the front door. No one was there. Why don’t we go for a walk now, I suggested. He agreed.

We weren’t more than a quarter-block down the street when the neighbors across the street ran up to us and to tell me they were just ringing the doorbell to see if Frankie wanted to come out and play. I was dumbfounded. How had I not heard the bell? Why had Frankie heard it and not me?

Years later, I would learn that children have lower hearing thresholds--the softest noise they can hear on average is quite a bit softer than adults can hear. Since my hearing then was worse than the average adult and hearing aid technology has never been able to amplify high pitches enough so I can hear them, voila, that’s why I didn’t hear the bell. In conjuction with my distance from the sound source, and the reverberation of the high ceilings, no wonder it was impossible for me to hear. Consider this: at the time, I had a mild to moderate hearing loss in the left ear and moderate to severe in the right and I was only aided on the right. I was still missing plenty. It makes sense now but, as a teenager, I was still so far in denial about my hearing and the reality of it. I didn’t want to accept that my hearing affected every facet of my life.

Growing up Stubbornly Hard of Hearing

Now that I have this newfound perspective, I realize there have been so many defining moments related to my hearing loss. The first, came in the form of teasing in elementary and junior high school.

Let me share the backdrop for the teasing. When I was in the third grade, my father had a mountain biking accident on famous Mulholland Drive in Los Angeles. He was veering to get out of the way of a car he thought was driving too close to him when the front wheel of the bike failed. The rim of the bicycle wheel was severed. He was riding downslope at the time, so the jolt caused by the wheel collapse flung him dozens of feet into the air. He landed face first. The impact left his face split open from the nose down and his teeth and part of his jaw bone decimated. Nearly a dozen surgeries would follow but miraculously, my father would survive with only scars, titanium implants and mild short-term memory loss to show for it.

I was extremely vulnerable after this cataclysmic event. I went from being sociable with my group of girlfriends to a child slowly retreating inward. A misunderstanding between friends led to a huge tiff shortly after my dad's accident and consistent playground ridicule ensued. Up until then, my hearing aid--I only wore one in my right ear off and on from my diagnosis until age 27--had just been something I forgot to remove when I jumped in the pool in my backyard. Quickly, though, it became added fuel for the fire for my tormentors. Suddenly, I was acutely aware of my differentness.

I moved to a new school for highly gifted students for 4^th and 5^th grade where I remained aided. But, when it was time to go to junior high, I was determined to fit in. To fit in, in my mind, was to stop wearing my bulky behind-the-ear hearing aid. And, that’s what I did.

Of course, this stubbornness about my hearing loss in conjunction with all the typical pre-teen angst made me pretty much a terror. I was too young to realize the biggest source of my troubles was my refusal to be aided. I just knew I didn’t stick out amongst my peers anymore and that was all I desperately wanted. Mom and Dad tried and tried to encourage me to wear my hearing aid to no avail.

Three trying years later, it was time for high school. My parents and I had moved to a new neighborhood and so I was going to a school where I knew only two people. It was a fresh start that I was both excited and nervous about. At age 14, my ear was fully developed and I was the perfect candidate for a more discreet aid option—an in-the-ear Widex. Thousands of dollars of my parents’ hard-earned money were plunked down for the brand new hearing machine. My mood and grades improved almost overnight.

When I was 15 and a sophomore, my classmate Ari threw a big Halloween party at his mother’s house and invited all our friends. I dressed up in an emaculate Greek goddess costume complete with gold sequins. I felt like the Belle of the ghoulish ball. I was goofing around in Ari's backyard with friends for about an hour when it dawned on me--I was having a hard time hearing. My hearing aid was missing! I was completely devastated. Where was it? I was sure it had fallen out. I immediately burst into tears. I kept thinking, how are my Mom and Dad ever going to forgive me for losing this hugely expensive item? How was I going to live life without it?

My amazing friends began a search party as the sun went down that night. They combed the ground for the small skin-colored amplifier. They were essentially looking for a small snail in a big forest--no less in the dark! It was all for naught. After summoning the courage, I fearfully called my parents. I was relieved when Dad answered. I didn’t want to face Mom just yet. I pitifully asked my Dad to look in my room and bathroom for my hearing aid. I had gotten ready for the party in both just a couple hours before. My dad found it a minute later, sitting on the bathroom counter near the hairdryer.

The hairdryer has consistently been an object I can't use while aided. The amplified noise of a hairdryer sends me into a full-on state of panic. So, each time I use one, my hearing aids vacate my ear.

That Halloween, it had been more than a year since I had begun wearing my hearing aid daily. That night was the first time I had forgotten to put it in before heading out of my house for any reason. I was both relieved and incredibly embarrassed by my emotional display. Fortunately, most of my friends forgave me, though I think many of them never looked at me quite the same way again. I am not sure how many of them had been aware that I wore a hearing aid until that evening. I had chosen not to mention it to anyone. Now, the secret was officially out.

That same year, my hearing aid came loose one day in history class. My crush at the time made a comment about a weird whistling noise. He said it was coming from my direction. Frustrated at his relentless flirtatious teasing, I began to argue with him that he was making things up. Then, suddenly, it dawned on me, he’s hearing feedback from my hearing aid that I can't hear myself. I quickly took my hearing aid out for the rest of the day. At home that night, I told my Mom we needed to go to the audiologist to get the mold of my hearing aid resized. It was coming loose in my ear and calling attention to my shameful problem.

Once the new mold was ordered and received, life went on as normal. I became an editor on my high school newspaper, a swimmer on my school’s varsity team (poolside conversations and commands were next to impossible for me to hear but I never let on) and a superior student in honors and advanced placement classes. I was not defined by hearing loss or so I thought, and I was proud.

My pride got in the way most notably when I was applying to college. I had had my heart set on Emerson College in Boston for Broadcast Journalism since I visited the campus the summer before my senior year of high school. I applied early. My college counselor and my mother pushed me to include my impairment in the application. I refused. I felt if I did include that I was Hard of Hearing, it would essentially be like asking the admissions board for pity or a free pass for getting less than stellar grades in some of my classes. I had done just fine despite my hearing loss, thank you. Plus, I had convinced myself that any trouble I had in classes had to do with my intellect and not the fact that my classmates were talkative, that I chose not to sit in the front in most classes or that female teachers were generally hard for me to comprehend. I had long pulled the wool over my own eyes. I wouldn’t realize the tricks I had been playing on myself for nearly a decade.

Ultimately, I got into Emerson College but none of the other schools to which I applied. When I received the rejection letters, I considered appealing the decision, particularly to UCSB and UCSD. My well-meaning college counselor again suggested I include documentation of my hearing loss as part of my appeal. I adamantly refused and decided that if that was my only recourse than screw it, I had already gotten into my top choice school so who cared? Talk about being as proud as a lioness.

AIED, EVA and other acronyms

AIED: Autoimmune Disease of the Inner Ear

EVA: Enlarged Vestibular Aqueduct

IgM: Immunoglobulin M

22 years after being diagnosed with hearing loss, the truth behind my impairment has finally been revealed. A recent CT scan revealed I have a rare congenital defect of my cochleas known as Enlarged or Wide Vestibular Aqueduct. In short, this means I have more space in my inner ear for the potassium and sodium-rich fluid that is partly responsible for how every human being hears.

Bloodwork has also revealed I have Autoimmune Disease of the Inner Ear. This illness developed, as I look back retrospectively, probably about two years ago. The fluctuating aural fullness I experience daily began around that time. I also began to have more and more trouble hearing but I thought I just wasn't focusing. After all, my hearing loss was deemed stable in my teens after frequent audiological testing in my childhood revealed consistent results.

The same bloodwork done to identify AIED also revealed I have high levels of immunoglobin M in my system. A Western Blot for Lyme Disease also turned up positive. I am in the process of going to a rheumatologist to determine whether or not I do in fact have Lyme Disease.

Meanwhile, a few weeks ago I also suffered from a bad case of the stomach flu and an ovarian cyst rupture that landed me in the ER.

All this proves the way I have been feeling for a while now was really real and not a figment of my imagination. To know that I have spent my entire life trying to overcome an anatomical defect that caused hearing loss and that my hearing loss really has changed is both disturbing and liberating. To know that my feeling of being physically unwell was real is equally liberating. It is reassuring that there may be some relief in sight.

I've begun to write about all these new discoveries at the suggestion of one of my former classmates in the Audiology program at SDSU (which I have since left in light of all my health issues.) This is what I have so far:

"I have been hearing-impaired since birth but it wasn’t until more recently that I have finally acknowledged I am Hard of Hearing and not simply Molly who happens to have trouble hearing. I have bluffed my way through more conversations than I can possibly count. The number of times I have asked for something to be repeated is likely approaching the number of stars in the sky. I have dominated conversations for as long as I can remember. And, when I can’t control the conversation or the setting, I retreat into myself.

I remember the first time I saw my hard-of-hearing 90-year-old grandfather get lost inside himself at a family get-together. The pain I felt as I recognized his behavior and the look on his face as those I have displayed my entire life ran indescribably deep. No matter how much I’ve wanted to hide the truth my whole life, my hearing impairment has led to countless misunderstandings, consistent struggles and numerous damaged relationships. That is the painful truth.

Years ago, I came to the realization that my hearing loss was invisible. I had always wanted it to be so. But, as I got older and settings like those at work, family events and outings with friends got increasingly dynamic and varied, I realized the very same invisibility I had often been grateful for was in fact a burden. As a young kid who was desperate to fit in and be normal, I used to often privately thank the gods I hadn’t been dealt a disability that had left me disfigured. Very few people have stopped and stared at my hearing aid—particularly when my hair has covered it or when, during my junior high school years, I chose not to wear it all. I could ignore the problem as much as I wanted and make excuses for my hearing impairment as much as I wanted. People wouldn’t judge me at first glance. And, when they did judge me, I thought it was because of my merits, not my disability. That was how I coped for 27 years.

Now, everything has changed. The day I returned to work after marrying my soulmate and enjoying an amazing honeymoon in Napa and San Francisco, I was laid off from my television production job. Four months after being dealt this professional blow, I tore my ACL on the slopes of Mammoth Mountain. Down on my luck and as physically limited as my elderly grandparents, I had a lot of time on my hands to reevaluate my future. I have always had a highly analytical personality. It had always gotten me far.

My plan from the time I was a pre-teen was to become a professional journalist, a loving wife and mother, a daughter my parents would always be proud of and an upstanding member of my community. At 25, I was a loving wife and daughter with a career in shambles and a body that was temporarily shut down. I decided during those months of recovery that I wanted to help others like me. I wanted to become an audiologist. The decision was a really personal one. Growing up I didn’t have any peers who were hard-of-hearing. Like everyone else, I had always considering hearing loss a disorder exclusive to adults and the elderly.

My parents and I had been told at age 5 that I had hearing loss and that it was due to a precipitous birth. I had the umbilical cord wrapped around my neck on the afternoon of Monday, October 10^th, 1983. My mother’s obstetrician used forceps to deliver me shortly after 5pm. I looked like E.T. in my parents' prized first photo of me, snapped in the delivery room. That didn’t matter to Amy and Dale. I was their first-born--and, ultimately, their only child-- I was perfect. Molly Caitlin Millbauer was one of the most loved babies this world has seen.

Shortly after birth, I developed a hematoma on the right side of my head as a result of my risky delivery. My mom lovingly referred to me as her “broken child” because the hematoma left me unable to lift my head. As it shrank, my neck grew stronger. Finally, eight months into life, I was no longer broken--my head was firmly planted upright on my little frame.

By one and a half, my once jet-black head of hair had turned white blond and curly. The color of my hair set off my blue eyes. I looked like a cherub. Toddling around in my childhood home, I was slow to speak and a little quiet. But, I almost always had a smile on my face and I loved and was loved by my family.

My speech finally came as the years went by—it came predominantly in the form of Spanish. My mom returned to work four days a week as an office manager for an Infectious Disease Specialist three months after I was born. My dad worked full-time as a Real Estate Consultant. I had several caretakers but by age 2, I was being cared for by my Spanish-speaking nanny Consuelo. Cony is from El Salvador. She had left her young son and daughter behind in El Salvador in the care of her mother, while she went to work in Los Angeles with the goal of providing for her family. Cony found a surrogate daughter in me. Before long, I was holding conversations in Spanish with her. My favorite past-time was following her while she cleaned the house pushing my Fisher-Price vacuum cleaner along the way, yelling “¡Limpia! ¡Limpia!” at the top of my lungs.

I preferred Spanish and my mom who was herself nearly fluent because of her lifelong love of Romantic languages (she had taken years of Spanish and Italian in high school and college) indulged me. After all, the ability to speak in two or more languages is a huge asset in this increasingly small world. As I began school, though, it became apparent that my English language abilities were delayed. I had trouble with pronunciation. A “sharp” was my name for Jaws and his other fellow scary beasts of the sea. I ate raisins with reckless abandon and would refuse to call them anything other than my name for them--“Eeries.” My teachers began to encourage my mother to speak English in the home to help me progress linguistically. So, that is what she did. Spanish was used less and less and slowly, my English skills improved.

It wasn’t until I had all but lost my Spanish skills, that my hearing loss was finally revealed. To this day, I am an English-only speaker with very limited understanding of the Spanish language. In fact, I struggled immensely in high school Spanish. A big part of my poor grades in these Spanish classes: accented speakers were slowly becoming harder and harder for me to comprehend."

More to come soon....

May weather is my favorite

It's the beginning of May which is very hard to believe. I used to think it sounded so cliche to say this but-- this year is just flying by. I am happy to report that I got an unexpected part-time job doing data entry thanks to a friend. It's really important to know people in today's economy! It's a temporary gig but extremely welcome.

Last weekend was incredibly awesome with my friend Tami coming to visit and perform at La Jolla Comedy Store. After that, my friends Marie and Paul, who I have mentioned on here before, came in to town from New York. I spent several days with them and our mutual friend Lindsay getting to know SD better. We enjoyed Seaport Village which I can't believe I hadn't been to yet (except apparently one time as a young child but I don't remember that). Definitely recommend checking out Urban Girl there. We also hit up Old Town which is always a blast. Friday night we went to The Office in North Park (which I also HIGHLY recommend). Two for one drinks there during happy hour and the best fish tacos from a food cart out back. We danced to some awesome music mostly from the 70s and 80s. I forgot how much I LOVE to dance. I probably looked like a damn fool but I don't care! Good way to work up a sweat.

Right now I am trying to lose some weight I gained in the process of my recovery from my ACL injury. It is proving to be much harder than I thought it would :-(.

The next couple of weeks will be pretty jampacked with fun. This weekend Zack and I are heading up to L.A. for Mother's Day. And, the following Friday we will be heading up to Dana Point for a wedding. Zack is the best man. Love the couple who is tying the knot. There's sure to be pictures to follow.

Latest Obsession: Black Session beer by Full Sail (see below). Zack and I actually visited the Full Sail Brewery in Hood River, Oregon earlier this year with my cousin Jolie. Readily available at Bev Mo these stubby 11oz glass bottles of heaven have "Rock, Paper, Scissors" logos on the flip side of each bottle cap. I have yet to collect them all.

Things I enjoy... and you might, too!

Hot Power Fusion yoga classes at Corepower Yoga.

Reading a good book like Middlesex, The Help, The Good, Good Pig or anything by Charlaine Harris.

Knitting--here's one of my latest creations:

Swimming. Damn, I miss having a good pool to swim in.

Skiing, or at least I did before I hurt my knee. We'll see how I do when I make my return to the slopes next winter. Stay tuned.

Wine. My faves are Savignon Blanc, Cabernet Franc, Pinot Noir and Petite Syrah. Trader Joe's carries this awesome Petite Syrah that Zack and I get often:

Volunteering with the Pet-Assisted Therapy program at the San Diego Humane Society. I volunteer several times a month. We take animals to people in facilities and schools. The power of animals to heal people is just astounding to watch.

Decorating the condo. Here's just some of the improvements we've made lately.

This list will be expanded upon often. For now, it's time for bed.

New to the Blogosphere

I've been wanting to test out a blog of my own for a while now. My friend Marie and her husband Paul have one that helps me stay in the know about their life, travels and home renovations while they're on the East Coast and I live here on the West with my husband, Zack. I have never been really good about keeping a diary current and up-to-date. I guess, life just gets too hectic or maybe I just lose interest in putting pen to paper. Hopefully, I will do better in this format.

It's really been a transitional couple of years for me. I moved to San Diego in December 2006 for work. I was a journalist and I got a gig at Channel 8 as an associate producer. Less than a year later, Zack proposed while we were on vacay in Cancun. A year after that on November 2, 2008, Zack and I got married. Here we are :-).

We now live in an awesome condo in Hillcrest near historic Balboa Park, the San Diego Zoo and Sea World. We also have a fabulously hilarious little guinea pig named Chip. Isn't he cute?

I had just started a new job right before I got married, only to get laid off just a few short months later. To make matters more complicated, I had a skiing accident a few months after the layoff that busted my ACL (leading to surgery and months of physical therapy). All this craziness left me a little frazzled. Eventually, it also forced me to make a drastic, positive life change. I decided that it was time to pursue another profession. I began prepping for a doctorate in Audiology. I'm hearing impaired and have been since birth. My personal experience with hearing loss has also made me interested in the field.

After completing several pre-reqs, I applied and was accepted into the joint doctoral program in Audiology offered by SDSU and UCSD. I start this fall! I am extremely excited. And, viola, that's the story behind the title of this blog!