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.