Processors and Improvements

3 days ago I was not only implanted with my second implant, but I also received a newer processor for my new ear, and it came with a backup processor that I’m also using to upgrade my old ear’s processor. I’ll keep my old processor, just in case. My left ear, my old ear, is 6 years post-op, and although I qualify to upgrade it’s processor on it’s own, without using my right’s ear’s backup processor, I’ll wait another year (or two) for Bluetooth.

Below: On the left is my old Nucleus5 Cochlear America’s processor.
On the right is one of my new Kanso processors.

One thing I found the very first day was that I LOVE not having an over-the-ear device anymore. It’s been wonderful. I honestly forget that I have it on now, and my over-ear portion doesn’t slip off my head or skew at funny angles when I have sunglasses or prescription glasses on. It’s a win!

At the audiologist the other day, she recommended I take my left processor off for a few hours ever day to boost progress on my right ear. I’ve been doing that as often as I can, when I’m not working or really needing my left. I’m having major deja-vu with my right ear on. Constantly, I find myself stopping what I’m doing because there’s some noise I’m suddenly picking up, and I have to figure out what it is. Refrigerator, air conditioning, water running, any number of sounds I don’t understand with my right ear. I find I’m re-learning every sound. Fortunately my brain does remember what sounds I heard first the last time around, so I can use a process of elimination to figure out which sounds I’m hearing at the moment.

Over the past few days, I have noticed some small progress with my 2nd ear. I was in a loud noisy restaurant with a large group on Sunday, and I could understand conversation without a huge amount of effort, unlike it used to be. The people to the direct right of me (where my new ear is), I had a lot harder time with, but if they were in front of me or anywhere to left direction, I could clearly understand their speech in this noisy environment better than before.

As for the people to direct right of me, I know that I failed to understand them as much because I didn’t have my left ear as my primary ear picking up the sound. It could only slightly compensate. Whereas with people in front or to the left of me, my left ear primarily was in use, with my right ear compensating. It’s imperative that I get my right ear to understand speech better, so that with a minimal help of my left ear, I can only image how phenomenally well I will do in large loud noisy settings.

Something else I learned? I’m SO EXHAUSTED by the end of the day! I forget how much brain power I use when I’m trying so hard to learn new sounds. I’m thankful though, and I know all these new sounds are worth every effort!

Activation Day: Going Bilateral

One thing I find about myself is that I like to occasionally go back to look at where I started, so I know how far I’ve come. With that knowledge about myself, I felt it was absolutely necessary that I catalog my experiences going bilateral.

My activation date for my 2nd implant was set for June 29, 2017, and when I arrived at the office, the office was dark. Closed. Apparently in some miscommunication, I had failed to understand I was supposed to be at a different office, about 1.5hrs away from where I was. I very quickly got flashbacks of 6 years ago, the agony of not being activated, the lengthy wait time for the revision surgery, and the arduous wait for the actual activation, 4 months after it was supposed to happen.

I called the office, and they fortunately were able to squeeze me in the next morning, first thing. I was relieved and angry all rolled into one. My husband joked that there was just something about me and activation days. So true, so true.

Friday, June 30th I was officially activated with my 2nd implant.

My audiologist had me take off the left processor. I was receiving two new processors. She would transfer my mapping data from my old processor to one of the new ones, upgrading my “old” ear’s processor. While working on that, we went through the process of mapping my new ear’s processor.

When she turned the processor on with full sound, it was only my right ear, my new one. My very first thought was darn! Everything has the bizarre high pitches again. Unreal sounding aliens and Mickey Mouse thrown in here and there. This is exactly what it was like when my first ear was activated. It really is like starting ALLL over again! Somewhere in the back of my head, I really thought that all the amazing progress I’d made over the last 6 years with my left ear would somehow magically transfer to my right ear.

No suck luck.

My audiologist explained to me that our ears each have their own individual neural pathways to the brain. So yes, I do have to start all over again with my new ear, because the ears can’t learn from each other. I can see how that’s a good thing, but it didn’t mean I liked it at the time…

My 9 year old daughter asked a few questions to the audiologist and I could understand some of her words. See, the last time I went through this, there was an overwhelming feeling of awe, knowing I could hear sounds again. This time though, I’m spoiled in already knowing I can hear those sounds, and not wanting to put forth the effort to study the sounds with my new ear. My mom, in near tears, not knowing the thoughts and emotions spinning around in my head, commented about how amazing it was for me to finally be able to hear out of that ear again. She was amazed! Naturally, I reminded myself of the truth in what she just said. I’m incredibly fortunate to be given this opportunity.

After a few minutes with just my right ear turned on, my audiologist finished transferring the data to my left processor, and I turned it on. When my daughter spoke, it was interesting to mentally note that my brain instantly could tell I was hearing on both sides. It was louder, and still very odd sounding too.

We went through all the fine details about all the new accessories that came with my new processors. I can’t say anything significant came to my head as we packed up and left the office. I was just trying to adjust. Everything was so weird sounding all over again, and I just tried to do my best at keeping up with how different it was again. Understanding words was a lot more work again. My left ear had to work extra hard to compensate for the right ear’s distorting sounds. My work had definitely been carved out for me.

After going home, dropping of my husband and kids, I drove to the store, needing to be busy. As I passed the crosswalk and was about to walk through the doors of the store, a large vehicle passed behind me. I distinctly heard the sound pass from one side of me, leaving one ear, and entering the next before exiting. I paused. Turned around. That’s new, I thought, as I realized I really did see the vehicle and it really did just happen. I half smiled. I think I can do this after all.

Two Year Blog and the [sort of] end.

Is it me, or did the holidays just fly by this year? And to think that we’re already full-blown into the new year, with new goals and ideas already in our midst. And I’ll be adding mine to the pot.

If you’ve been reading here a while, you might notice that today is the two year anniversary of my blog’s existence.

I started the blog two years ago without telling a soul, other than my husband. It was a way for me to vent my frustrations as the deaf person I was. Looking back, it’s only now that I realize how much I was hurting, depressed, and in a way, I feel like this blog saved my sanity. By writing, I was able to express all those pent up emotions that I was too afraid to tell anyone about. By opening up myself, I realized how many others out there faced exactly what I did, and it made me feel like I wasn’t alone out there. For that, I greatly thank my readers. You’ve grounded me in a way that nothing else really could.

While today is a big milestone of two years, it’s a little bittersweet to me. Today I also have to admit that with so much in my life right now, and being the now-stable-and-well-adjusted individual that I am, I just can’t see that I should continue writing the blog on a frequent basis. I’d love to continue writing about the challenges I face as a [technically] deaf person, but the fact of the matter is that I’m finding I can hardly relate to being deaf anymore. Being a little annoyed at my slight hearing loss, yes, but the trauma I felt as a deaf person? That’s not really me anymore.

My life has become….so….. normal.

Normal.

How many times did I want that two years ago? Every moment of my day.

In a way, I feel like my blog ends here today. I don’t plan on removing it from online. Far from it. If it can continue to help anyone who finds it, then it should stay here indefinitely. But it’s with a heavy heart that I say I won’t actually be continuing to write anymore.

But there’s more!

In 2012 I have big dreams. Big goals. And one of them is right here.

I’ve already started compiling all the blogs written here, and I want to put them in book format. My goal isn’t to see how many readers I can get or how many books I can sell. My biggest goal is to help so many understand what a person faced with hearing loss and cochlear implantation goes through on a daily basis. I’m really tempted to create an e-book for online only, but I do want to make it available to as many who might need it. So maybe a published book. Who knows yet? But I do know that while I won’t be posting in any frequent way here, I will update in a few months on how the book is coming along. Rest assured, I’ll post about the finished product here first!

Published or e-book, I gotta say that if I get a few readers, any and all proceeds will go directly toward my dream of getting a second implant. Oh surround sound, how I miss you! By technical name, I’d love to be a bilateral implant recipient. It sounds just dreamy, doesn’t it?

Now that you know the two goals and dreams most dear to my heart, I want to say a big thank you to those of you who have read my blog. Your reading, comments, and emails of encouragement have meant so much to me during this journey, and I’ve been so happy to have you along for the ride.

It’s the most boring thing to think, but so awesome for me to say, that I hope my life just keeps on being normal.

‘Tis the season. To give.

Christmas is all around us, isn’t it?

I’ll admit I was one of those crazy shoppers who braved Walmart at its opening on Black Friday, and fortunately I’m still around to tell the story. Bad news is that my cochlear implant’s processor beeped at me amid all the chaos of the moment, letting me know that my battery was about to die and relegate me to the land of the deaf. Good news is that although it beeped its low-battery warning, it didn’t actually die until my drive home.

Amid all the craziness of Christmas shopping, one thing I value as much as giving to family, is giving to those in need. I give a lot to my local church and various missions, but there’s a new recipient on my list this year.

With all my heart, I plan to give a donation to the Dallas Hearing Foundation. And seeing that this is my 100th blog post, I also knew it that in addition to my donation, I wanted to dedicate such a huge milestone to a worthy cause.

Having my Cochlear Implant activation this year really changed me, my blog, and my entire life. I value my implant and new life so much that I want to do my part in giving that gift to someone else. About a year ago I came across the website to the Dallas Hearing Foundation and after reading about all that they do, I’ve decided it’s a very worthy cause. Giving a donation to them will help another child or adult get the funding he or she needs to hear better. And what better way can I show my gratitude for what I’m so very thankful for?

I encourage all of you out there in this blogosphere, so many of you who I don’t even know, to take a moment a check out the website. If you’re looking for somewhere to make a donation to this holiday season, I ask that you please consider them. Even a small donation can help bring so much joy to someone who was in the same place I was in, not so long ago.

Don’t forget this season is about giving. Not just giving to those who expect it. But also to those who don’t, and those who may need it more than anything else.

To make a donation to the Dallas Hearing Foundation, please click here.

Thanks where my thanks is due today.

There are so many people I am thankful for in my life, and I’ve said so many times throughout my blog. My family and my husband’s have all been very supportive to me through so many years of deafness before my Cochlear implant, but today there’s also another I’m so very grateful for.

I’ve seen an enormous amount of posts across the web from so many who are thankful about various people and things (yay food!), and I couldn’t go without posting my own warm and fuzzy thoughts.

I’m thankful today, Thanksgiving day, for this man.

 

 

 

 

 

 

 

I thank God today for Professor Graeme Clark.

I’m thankful that Professor Clark had the tenacity to succeed and successfully implanted the very first multi-channel bionic ear and cochlear implant. If it hadn’t been for his perseverance, despite so much stacked against him, I wouldn’t be hearing during my very first winter Thanksgiving after being deaf for so many years.

Many, many thank you’s to Professor Clark and to Cochlear Americas for what they began and what they continue to do.

“In spite of the problems and criticisms, I just had to go on. A cochlear implant was their only hope of ever hearing.” – Professor Graeme Clark

My little boy. His first hearing test.

I’ve said many times here and there that my hearing loss condition runs in my family.

Today began by being very challenging. I’ve talked previously about needing to take my oldest child, my five year old son, to get his hearing checked and today I did that. My cochlear implant audiologist’s office was a bit steep on the price for a hearing test, and because my son isn’t medically insured, I took him to the audiologist that I used many years ago when I got my hearing aids, long before my cochlear implant surgery.

I don’t think anything really prepared me for walking into that audiologist’s office today. I had told myself time and again that it was a simple test, it was likely that my son has zero hearing loss, and there wasn’t anything to be nervous about. And I wasn’t much until I stepped into that office.

My son had no hesitation. The minute we walked through the door, his eyes zoned in on some large leggo blocks, and the rest is simply history, for him at least.

I have been very careful the last few days, only telling him twice that he was having a hearing test, and very intentionally making it out to be no big deal. The last thing I want to do is create an anxiety or fear about it in him. The only thing I made a big deal about was that this wasn’t a “shot” doctor. He was good to go after he knew that he wouldn’t be getting a shot. Gotta love kids.

I had both my son and my little girl with me today. And I have no idea why I didn’t think to have someone go with me. Who cares about help with the kids? I definitely could have used the emotional support. My son walked in front of me and I held my little girl’s hand as we walked into the room that housed the sound-proof room for the hearing test. Audiology equipment sat at a little table, just under the window looking into the sound-proof room, and I felt like time stood still for a few moments.

I realized I hadn’t done this before. Because the times I’d been in this room before, it was all about me. Not about my little boy.

The audiologist checked my son’s ears a moment, asked me a few questions about why I wanted to get his hearing checked, then we both ushered my son into the sound-proof room, indicating for him to sit in it’s only chair. The audiologist placed headphones on his little ears, showed him how to push the button on the little remote when he heard a sound, then she stepped out. She closed the thick padded door and my heart nearly broke in two.

I forced myself to remain calm. This was only a test. No big deal. But I paced back and forth and wiped my teary eyes a dozen times as the audiologist made notes across my little boy’s first audiogram. She finished, and I held my breath.

She turned and looked at me, and it took me a second or two to really process what she said. My little boy heard just as well as any five year old boy does.

I couldn’t decide whether to cry, jump up and down, or give her a huge bear hug. I didn’t really do anything, just kinda stood there with my head spinning as she turned and opened the big door for my boy to exit the enclosed room. I smiled and told him how very proud I was of him sitting still and taking the test. He just shrugged like it was no big deal. Just like I’d hoped he would.

I let out a great big sigh of relief as we exited the office today. Thank God for such a great day. Fabulous day. With such good news.

Discount Tires. All. By. Myself.

This week I was privileged (or not so privileged) enough to visit this place.

Discount Tires.

Yes, I do have a husband who could do this type of thing for me, but because he’s worked a few too many 12hr days this week, I absolutely insisted on going myself.

My husband did call ahead for me, made an appointment, and even told them what type of tires should be put on our SUV.

Something I realize now, looking back, is that I wasn’t even nervous about going in. There was apathy and boredom about the chore, but no apprehension.

I also visited Discount Tires a year ago and remembering the experience is like remembering a different lifetime. It was completely different the trip I made this week. And remembering last year’s visit is like remembering what it was like to be deaf, the time before hearing with my cochlear implant.

I remember last year when I went into the store, I had the sales guy repeat most everything more than once, and I remember actually being upset with my husband that I had go in and to do this myself. I didn’t touch my phone, look at a magazine, or watch TV at all while waiting. I spent the entire waiting period watching every worker like a hawk, trying to know when they’d call my name for my vehicle, not wanting them to call more than once. I’d be mortified if they called me a dozen times and I didn’t hear them. Can you imagine how embarrassing it would be for me if they called me five times before I noticed? I’d have to shake it off and murmur something about not paying attention like I always did. No one ever really understood what deaf meant.

This week was so different. I actually wanted to do it myself. I didn’t want my husband to waste precious free time when, because I don’t work, I can easily just do it myself. It’s almost ridiculous to think he should need to. Or have to. And I realize now that the reason I felt he should have to last year wasn’t really for the reasons that I thought.

I can’t say I love Discount Tires. It’s kinda boring sitting there waiting on tires to be replaced.

At least this year I had my iPhone to keep me entertained. When they called my name, I heard them just fine the first time.

Energizer Bunny {or batteries} not included

There are a whole lot of good things that have come my way since the activation of my cochlear implant seven months ago. My marriage was revamped, my relationship with my kids blossomed, and I’ve made a zillion friends now that I can hear everyone.

This past month I’ve come across the biggest, hugest, most ginormous obstacle that a cochlear implant recipient has. While I realize it is my own opinion and may not be shared by all, I personally think my opinion is the most accurate.

My hearing right now is completely, one hundred percent battery operated. Big big big deal.

Back when I wore hearing aids, my hearing was also battery operated, so I realize that I should be used to this by now. But I’m not. The simple fact of the matter is that back when I had hearing aids, they helped me go from about a ten percent hearing comprehension to about a fifty percent hearing comprehension. In a group setting though, with or without those hearing aids I was probably only about a ten percent comprehension. Groups were so not my thing. I was lucky if I could just understand what the topic of conversation was, much less understand what they were actually saying about that topic.

Now that I have a cochlear implant, I still understand about ten percent (or less) if I don’t have my processor on. With my processor on, I think I catch around eighty percent of conversation. Serious difference. In group settings, that eighty percent doesn’t even vary much unless I’m in a very noisy environment or a very big group. So generally speaking, if my battery were to go out, it would be a pretty big deal to not be able to hear now. A much bigger deal than it used to be.

Here’s the kicker though.

Back when I had hearing aids, I had two. So when one battery went out, it was annoying. My conversation skills suffered a little, but most of the time I wasn’t catching much anyway, so it was frustrating, but not much more than that.

Skip forward to today. I have one, singe, lone cochlear implant. So when my processor battery dies, it’s like my whole world of conversation dies right along with it.

Sometimes I feel kinda sorry for my mom. She’s driven miles out of her way to take spare batteries to my dad and my sister on multiple occasions when their processor batteries died, but until a month ago, I was the good CI recipient. I kept thinking, why didn’t they keep enough spare batteries with them? Aren’t they both old enough to remember that type of thing? To be responsible adults?

It’s funny how those types of thoughts come back to bite you in the butt. Don’t look at me like you’ve not thought those same things about someone and not had them happen to you. I know the truth.

So a month ago I was volunteering at a big event and my processor battery dies. My mom is my family’s lifesaver, and I called upon her power of batteries in my time of need. Thanks, Mom, we love you.

While I try really hard to always remember backup batteries or to charge my rechargeable ones, it’s just impossible to always always remember. There are just times when it completely sucks that my battery dies because I was in too big of a hurry to dash out the door.

Sometimes I do remember to bring spare batteries with me, but it still somehow just doesn’t go down well. Two weeks ago I took my kids to Six Flags Over Texas. When my sister-in-law and her kids joined us mid-day, my processor battery suddenly died. I had a spare in my purse, but unfortunately I had left it locked in the car. My sister-in-law graciously offered to watch my kids, so I made a quick jog out of the ginormous park and all the way through the parking lot to my car. When I got to my car, I remembered that I had locked my purse inside. And my keys were back inside the park in my daughter’s stroller. Arg!!!

You don’t even want to know how worn out I was after jogging back inside, back out to the car, and back inside again.

Let this be a lesson for all of you with perfect hearing. Be very very thankful that you’re not battery operated. It can really stink sometimes. Granted, you won’t ever catch me ungrateful for this device I have, no matter that it costs me a few extra moments of preparation for my day (and throughout my day). Just be aware of it, and remember this random information about us cochlear implant recipients.

Too bad those Energizer batteries really don’t last a lifetime.

The trouble with insurance…

I’ve always been a very private person. I don’t know if it’s because of being late-deafened or if it’s just who I am, but it’s always been really easy for me to keep any and all matters of the heart very close to my chest.

I’ve had difficulties deciding if I should post this blog, simply because I feel it’s a private matter. But if I’m going to be honest about this journey I’m on with my deafness (and now hearing with a cochlear implant), then I know I should shove this out in the open. I certainly don’t post this for myself, but because I want any struggling deaf or cochlear candidate who reads this to know that I struggle right along with you. You’re not alone. We’re all pushing through life best we can, and it’s so so important that we keep a positive outlook and believe God for the best.

I know, I know, you probably wonder what kind of struggles can I possibly have now that I’m no longer facing deafness but hearing with my cochlear implant. I’m right there with ya. I thought my world would be nearly perfect after my activation, but apparently this world just isn’t perfect. Who knew?

This week I decided that it’s time to stop dragging my feet and to send my oldest child, my son now 5 years old, to get his hearing checked. Because my late-deafness can be hereditary (although I do pray constantly my kids didn’t get it and won’t ever), I want to be a well-informed parent and send him yearly for a hearing check-up now that he’s reached school age. Some schools do give basic tests, but I’d much rather send my son to someone who knows my medical history, my audiologist.

Before spending a bundle on a specialist, I have sought out medical insurance for both my kids.

I don’t work at the moment. My college degree is for a field that requires customer service, and because I’m not confidant in making phone calls and have to say so in job interviews, I have yet to be hired in my line of work. I was once employed by a company years ago, but when I stopped being able to hear over the phone (or to talk on a radio to guys on a construction site), I lost my job. Yeah I know that lawsuits are an option, but I’m not one to use that route.

After losing my job years ago, it was after that that I looked into the cochlear implant. I couldn’t get insurance through my husbands work, so I tried purchasing medical insurance privately, only to be denied by company after company because I was already a candidate for cochlear. And no one wanted to pay for that. I eventually found a government program to sponsor my cochlear implant surgery, which I’m ever grateful for, and sometime after I was approved to have insurance through Medicare.

How does that affect my kids?

This week I called the Social Security Administration, who funds my disability Medicare, and asked how to get my children insurance. I was told that while they can’t get Medicare, I could apply to get them Children’s Medicaid or CHIP, both government programs geared toward children. I applied to both programs, but it turns out that my husband makes just slightly over the income limit. CHIP recommended that I call the Social Security Administration to find out where to get insurance.

Obviously that brought me full circle.

I got a bright idea, remembering that neither of my children have any medical conditions. Being that, why would they not qualify for me to purchase private insurance? I looked around online, not finding a private company that listed quotes for only the children. The companies wanted me or my husband on the plan too. Since my husband’s work pays for his insurance, and I have Medicare, that didn’t really work for us. So I randomly picked a private company to call and see if they did have plans for children only, it just might not be on their website.

When I called the insurance company, they told me they didn’t service Texas, but gave me the number to the Texas Department of Insurance. When I talked to the lady at the Department of Insurance, it was there that I got the answer I sought. Apparently in Texas, private insurance companies cannot sell insurance to children only. A guardian or parent must be on the plan as well.

Basically it boils down to that at the moment I haven’t found a way to buy insurance or use a government program to get them insurance either. What does that mean? I have no idea!

I can’t say that I have thought much about the long term with this issue. I’m not going to worry, because I know that inevitably everything can work out the same way it all worked out when I had so much trouble getting my own insurance. Worrying isn’t going to help me out any. What I can do for today is call my audiologist and see if they can give me some sort of discounted price to check my son. If they want to charge me the full couple hundred that I know it can be, then I know there is an audiologist in my metroplex that does non-profit work for children, and he might help me out.

So there’s my dilemma, laid out before this blogosphere. I think everyone knows our government isn’t perfect, so there’s no need for a big long rant. I rather just remind us all that it’s so important that we not only pray for our nation and it’s leaders, but to do more and to educate ourselves about our government and do what we can to vote the best leaders in place and voice our opinions on changes we need made.

Ending on a positive note, I will say that I was pretty intimidated by the amount of phone work I had to do through this situation. I was fortunate to talk with people who all spoke very clearly, and did have several times when I had to ask someone to repeat themselves or slow down. All in all, I’d say I’m doing pretty good on this recovery road to hearing!

Roller Coasters.

I searched a little bit before my cochlear implant surgery to see if I’d still be able to ride roller coasters. I’ve searched again a few times post-surgery and activation too.

And I really never find much. I’ve read a lot from other CI users about how it’s better to take off your processor on more thrilling rides, simply so you don’t want your processor (the outer portion of your CI that looks similar to a hearing-aid) to fly off or anything.

But I’ve never really specifically read anything that said, “Yes, it’s perfectly fine to ride any and all roller coasters with the implant in your head. It won’t move, come out of place, or anything similar.” Again, let me emphasize that I’ve never read that. Anywhere. Nor has my doctor ever said it. Or have any definite answers for it.

Enter the human guinea pig. Me!

My husband and I got Six Flags Over Texas season passes for our family of four. Monday was a school holiday.

I rode this ride with my son.

This is the Shock Wave. By roller coaster standards these days, it’s not very crazy. It goes up to sixty miles per hour, and it has these two loops after the first big hill.

Now I’m no expert, but when I went through that first loop, I can only assume that feeling the popping sensation in my left/surgical ear wouldn’t exactly be smiled upon. The disorientation for the remainder of the ride might not be an ideal situation either.

So there you go. Roller coasters with loops are not recommended by this CI candidate.

Don’t worry though, I’m not done here. That was just my first experience and I have many more to follow. Eventually. I didn’t think my stomach could quite handle another one quite yet. I think I can handle speed on my next trip, but those loops were a little much that day.

Next time it will be speed. Yes, definitely have to test a fast one. (Just no loops).