Category Archives: Hearing Loss

I suck at consistently writing

Did I really just go an entire month without even thinking about blogging? So much has happened, I don’t even know how to update you properly.

I’ll say I do believe the unplanned hiatus was a result of the medication I’m now on for anxiety. It starting working right away, but I discovered it was actually working a little too well. I went from being anxious about every possible thing, to not caring about much at all. Even the important stuff. So a few days ago I started taking half a dose, and that seems to be working out well. I’m caring again but I’m not having panic attacks, and that makes me very happy. I’m praying that I’ve found the right balance and look forward to moving on with my life.

My daughter turned 8 a couple weeks ago. My precious baby girl is 8. She’s growing up too fast for me. I just need her to slow down. She is currently obsessed with unicorns and animal print – two things I have zero interest in or experience with, so I’m sort of watching her from afar, in awe of her sense of self and unashamed quirkiness. I know she’ll look back on these days and wonder what she could have been thinking and ask me why I didn’t forbid her from making these disastrous fashion choices, and I cannot wait for that day. I was her age during the 80’s, so I have plenty of those groan-worthy memories to look back on.

We threw a party to celebrate right here at the house, with a handful of Natalie’s friends from school and the neighborhood, both old and new. The girls gave themselves Jamberry manicures and ate unicorn cake and rainbow sherbet. Then at the end we had time leftover so the girls put together a fairly rowdy game of Simon Says. It was really something to be on the outside, seeing her in her element and enjoying spending time with her friends. She just seemed so grown up, so “Eight.” It’s one of those days I hope I never forget.

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In other news, I went to a new audiologist today to update the programming of my cochlear implants. While the audiologist I had been seeing was nice and all, we never felt like she really knew much about the technology for my implants. I think she probably dealt more with hearing aids. With my last programming, my husband was positive that it was a big change in the wrong direction, and that I ought to find a new audiologist. Well, I finally did and it certainly paid off. The office only services people with cochlear implants, so that is their specialty. We knew as soon as we walked in that we were in the right place. The visit took a solid two hours but it was thorough and I left feeling a ton more confident about my hearing level and speech recognition. Exhausted, but confident. I’m looking forward to the days ahead, for every opportunity to hear all the typical sounds in a new way with this new and improved programming. Technology truly is a wonderful thing.

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In lieu of private journaling

Sometimes I just want to drone on with the ideas swirling around in my head. Normally I reserve those thoughts for my private journal, but today I felt like they were innocuous enough to share here.

Lately I’ve been fairly busy. Not with super important or time sensitive things, but just generally busy. Between doctor visits, Bible study, housework, and spending time with friends, I’ve had a steady stream of activity. And while I don’t hate that, I find it is kind of a new thing for me and a part of me is a little worried that I’ll forget something important. When I was working and going to school I had a million things to keep track of, and it was never a problem. Stressful yes, but I managed just fine. In a way, I think I actually enjoyed staying so busy. Then I was thrust into long term disability – or as I like to call it, early retirement – and now I am learning I need to find new things to keep me occupied.

For awhile I was keeping myself occupied with a responsible schedule of housework. Cooking and cleaning and other general household management activities. However, that was getting so Boring, with a capital B. So now I’m trying to step back a little on those things, because they are still necessary, and make room for some fun activities. However, I never really had many hobbies before, so I’m in what I like to call a brainstorming stage.

I do like to crochet, but I don’t care for the creative stuff, and you can only make so many afghans. Plus, it’s very antisocial because I can’t really crochet with friends. Well, I can, but not like I used to. I used to be able to have conversations with people while crocheting, but now that reading lips is such a crucial part of listening for me, I can really only do one or the other. Listening takes a lot more effort than it used to.

I’ve heard that bars around town have trivia nights, and I think that might be fun to try some time. I am convinced I would absolutely suck at trivia because my memory is horse dookey, but I think as long as it was with friends it would be fun.

I really, really want to try karaoke. I’ve done it twice in my life, and I know people groan when you talk about karaoke, but those two times were very memorable and fun for me. I was never the best singer, and of course I’m even worse now, but I still think it’s fun to sing along while everyone watches and laughs. My husband says I should warn people when I get up on stage: “Hey everyone, I’m deaf. And once you hear this, you’re gonna wish you were too!” You have to be able to laugh at yourself once in awhile, right? And isn’t that what karaoke is all about?

I discovered last night that my favorite afghan has some pretty significant holes in it, which are like cancer to a crocheted blanket, so it’s on it’s way out. This was the first afghan I crocheted with my favorite pattern, so it’s a little sad that it’s dying. BUT, I made it with really cheap yarn and I’ve improved working on that pattern over the years, so maybe it’s time I start a new one, just for me. A new favorite.

When I woke up yesterday I put my cochlear implants on and discovered the right ear processor would not connect. Checked all the cords, and everything looked fine. Tried the left processor on the right side and that worked fine, so I knew it wasn’t my head (the lady in customer service laughed at that). So I’m down to one ear until the manufacturer sends me a replacement. I can’t believe I made it through that phone call with one ear! Pitches are much higher with just the one processor, so everyone sounds like chipmunks. Funny not funny :/ I am not complaining, but it really did spoil most of my day yesterday. It took me a good while to come out of that funk, but I’m better now. I’m finding that with just the one, every day sounds are not as harsh or bothersome, so that’s something to be thankful for. Still, I will be happy to have that second ear back.

Kids have a half day today so they’ll be home soon! Peace and hugs….

Here’s an honest post

Not that my posts are never honest, just that this one is taking me a little bit of extra courage to post. I’ve got my big girl pants on here, folks.

I went to see my doctor yesterday to talk about anxiety. It’s something I’ve been struggling with for some time now, well over a year, only I’m just now realizing that’s what IT is. So I’m getting help.  And in case there was any shred of doubt in my mind that this was a real problem for me, I got worked up and nervous on the way to the doctor’s, worrying that we wouldn’t get there in time (with 50 minutes still yet to spare), and then the doctor’s office made me wait for a good 30 minutes. So I sat there, appearing completely calm, while my insides itched and twitched and crawled around. My heart was racing, my chest was getting so tight it was hard to breathe. When I describe all this to my doctor, and to friends who are familiar with anxiety, they nod in reassurance that it is a real problem and I’m not crazy.

These little anxiety attacks happen more frequently than they ought to. Very often, too often, they cause me to lash out in anger at my children. They don’t deserve that (usually lol). Also it’s just mentally exhausting to be walking around in an amped up state of mind, with your insides all twitchy and restless. Honestly, it didn’t bother me quite as much when I was fatigued. I’m not saying I want to go back to the land of fatigue, of course not, I’m just saying the anxiety wasn’t as evident. I didn’t really see it for what it was because I was blaming it on the fatigue and I could always just sleep it off. But no more. Now I am healthy and I’ve got energy to feel the things I’m feeling that need to be addressed. And now I’m addressing them. Lord, don’t leave me now. I still need You every day.

I’ve thought a lot about where this anxiety is coming from. Who knows, really, but I wonder if this is the residual effects of my vision and hearing loss. Now that I’ve reconnected with people and I’m in better physical health, maybe this is part of that grief and rehabilitation process. I certainly don’t like to give my disabilities more credit than they deserve, but it’s true that I live outside of my comfort zone almost 90% of the time. Nothing looks right, nothing sounds right. It’s all still very foreign to me. I have to believe that this won’t always be true. I have to believe that I’m going to find my new comfort zone. And when I do, believe me, I will move right in. I’ll decorate it with paisley, Wonder Woman, and maybe a cowbell or two. And all my favorite people will be invited!

 

Surviving, and then some

Today I did better than simply surviving, and that felt good. Exceedingly good.

Depression is still an issue. I’m addressing it, one baby step at a time. Talking helps, and I have amazing family and friends who make that task not feel so impossible to do. Baking also helps. I love to bake. Cooking seems to help too, though I can’t say I love it the way I love baking. Still, it’s something. At least with the baking and cooking there’s always something to show for it. And something to share with others.

Though culinary therapy may work for now, I’m not sure if it will be sufficient. I am feeling a lot of ugly emotions, and I know it’s a part of the grief process. I’m feeling some anger and frustration and homesickness. Not much in my life is familiar anymore. Everything looks and sounds different than it used to, and that’s difficult. It’s been three and a half years since I lost my hearing and vision, and I feel homesick nearly all the time. I long to feel at home in my own skin. Someday it will come, I believe.

I don’t know why I’m feeling such strong emotions after all this time, but I suspect they’ve been there all along, waiting for things to settle down before rising to the surface for me to deal with. So I guess I’ve just reached a part of the grief process I’m not familiar with, and may need some professional help to work through it. We’ll see. For now, talking helps. And cookies. There’s always cookies.

I chaperoned, sort of

Is chaperoned even a word? It sounds weird. Well, either way, it’s what I did today. I went along on a field trip for my son. I passed out papers to kids, I supervised and walked them around a museum. It was a lot of fun overall, but also extremely challenging for me. From the get-go I was out of my comfort zone because I rode the school bus with a gang of fourth graders. Buses are loud, fourth graders are loud, it’s all loud. And since my cochlear implants can only process a handful of noises at any given moment, it was all just a bunch of gobbled-gook to my brain. But the bus ride was really the easy part.

Once we arrived at the museum, I was in a little more shock. It’s just hard walking around unfamiliar places, and even harder when you are with a bunch of people unfamiliar to your specific needs. I mean, on the outside I look completely normal. Well, except for the cochlear implants, but I think most people assume that since I have them, I have no trouble hearing the way they do. I had not tried to explain to any of the adults that I could only see clearly within a small field of vision eight or ten feet ahead of me, or that in loud situations I need to be standing near the speaker, within lip-reading distance. So when the person in charge is talking to the group, I have no idea what they are saying. When they say something funny and everyone is laughing, I stand there feeling rather idiotic. I mean, I never know if what’s being said is important for me to know or not. They could just be giving a history lesson, or they could be giving instructions for where to go and when. If it’s the latter, I would kind of need to know, since I was being put in charge of a small group of children. In hindsight I guess I should have done a better job educating the teacher. But, all anxieties aside, I managed and we all had a good time. Luke and another student both helped me to know what was going on, so there wasn’t much problem there. Also, we were given thorough hand-outs detailing the schedule and location of each segment throughout the day.

So I guess you could say the day was bittersweet. On one hand it was fun, and really awesome that I was able to be there to support my son and his class – he had begged me to chaperone – and on the other hand it was bittersweet. I felt a lot more impaired than I usually do. It was a big stretch out of my comfort zone and away from my physical capabilities. But I think Luke understands that, as he is an empathic kid, and he appreciates that I had the courage to do it. He knows I only do it because I love him.

My very first reader question!

An interesting question was raised here on the blog earlier this week, and it’s one I felt important to answer. The question? What is a cochlear implant, is it for MS, and does it help?

Well, first off – a cochlear implant is a device implanted into the skull near the ear in order to replace a malfunctioning inner ear. I can’t speak much for the inner workings of the ear, and all the moving pieces natural hearing involves, so I won’t. But the cochlear implant takes the place of the cochlea, which is the auditory portion of the inner ear (Thanks Wikipedia). Basically, the cochlear implant restores hearing.

It’s not a terribly invasive surgery, and most people are able to go home the same afternoon. After one is healed from the surgery, the device is activated with the use of a processor that sits on the ear and is connected via cord and magnet to the implant. It’s kind of fascinating, if you ask me. When the magnet and processor is not attached, I hear nothing. Actually, that’s not accurate. It’s only when the magnet is unattached that I hear nothing. Complete and total silence. But when it’s connected, I’m back in business and hearing again. The processors that hang on my ears look like your typical hearing aid, but they work in a totally different way. Hearing aids amplify sound, but cochlear implants take sound and process it for you, communicating that sound to your brain.

Cochlear implants are only used with people who are permanently profoundly deaf, and who are not helped by hearing aids. It’s nothing like natural hearing, and everyone responds differently to the implants, but in general it’s been a very good thing for me and pretty much every cochlear implant recipient I’ve spoken with. I was a late-deafened adult, meaning I lost my hearing in adulthood. I didn’t grow up in the Deaf community, so it was a severe loss, losing my hearing. I had almost no way to communicate. I was profoundly deaf. I didn’t just lose some hearing, I lost it all. So the cochlear implants have been a huge help for me. I’m able to have conversations with my children, make phone calls (with the help of a captioned phone, usually), listen to music, follow along with church worship services, etc. It’s been a wonderful gift.

I do have MS, and while some people with MS experience hearing loss, my hearing loss was not caused by MS. When someone with MS loses hearing, it’s usually in only one ear, and is not always permanent. I think I saw a statistic that said only 6% of MS patients reported symptoms of hearing loss. My diagnosis was Autoimmune Inner Ear Disease, which affects less than 1% of people with hearing loss (including Rush Limbaugh, who is also a bilateral cochlear implant recipient). How’s that for odds? Maybe I ought to buy a lottery ticket.

I hope that answers your questions, MSersgettingfit! I’m sorry if I went more in depth than necessary, but it’s a big topic for me. Hard to scale it down. I still feel like I left so much out, so if I only raised more questions, please don’t hesitate to ask. Actually, this goes out to all my readers: I absolutely love answering questions, so please feel free to ask away. I am at your service!

The Social Security Office

I had to visit the Social Security office today. Here’s the long version (because that’s the only way, really):

I’ve been receiving Social Security Disability Income for a full two years now. After you’ve received benefits for two years, they automatically enroll you in Medicare. I have health insurance through my husband’s employer, so I wasn’t real interested in Medicare, but if it’s free, I guess I can’t complain. What I learned, however, is that Medicare comes in different forms, and the two I was enrolled in were Part A (hospital insurance) and Part B (medical insurance). Now Part A is free, but Part B is not.

Now Part B could be advantageous, if it covered what my current health insurance doesn’t, and saved me more than I would be paying for the premium. But I never looked into it, because I learned that my participation in Part B would deem me ineligible for another program I’m part of. I currently receive assistance paying for my monthly Tysabri infusions (for MS, $20,000 before insurance PER infusion), and if I didn’t receive that assistance I would be stuck with about a $5,000 deductible. (I did warn you this was the long version.)

So basically, I could pay $120 per month for Part B Medicare and possibly $0 deductibles OR I could pay $0 premium and definitely $0 deductible. Now I was a straight A student, and I went to college. I chose the latter.

Simple, right? Not so. In March, when they sent me my Medicare welcome packet, I returned the card stating I was opting out of Part B. Then June came, and with it a welcome letter – and a statement of my insurance premium for PART B. I called to say W-T-F and they told me that was just a standard letter and that I would receive another one telling me it had been cancelled. Another month went by and my benefits came, less the $120 for Part B premium. I was not so happy, and I called again. They acted like they knew nothing about my opting out, and told me I needed to sign a form requesting cancellation, and that they would mail it to me.

At this point I didn’t believe a word they said, but I gave it a week to see if the form showed up. It did not. I called once again, but this time made the call to the local office, in case I needed to make an appointment. They said an appointment was not needed, but that I should come down and they would get it all straightened out. They made it sound so easy but I was still doubtful. I made arrangements (thanks Grandpa!) to get to the office today and guess what? It really was easy. The hardest part, literally, was signing myself in at the kiosk to get in line, when they asked me this question:

Are you….
1) Blind/low vision
2) Deaf/hard of hearing
3) (to be honest, I really don’t remember what was after those first two, but I was looking for an “all of the above” option)

I waited for about an hour, which is what they warned me it would be, and when they called my number I had to ask a few of the people waiting where #10 was, but they were all happy to direct the obvious newbie to her station, and I found it just fine. The gentleman was exactly that, a gentleman, and immediately put me at ease. He reassured me that cancelling was a simple process, and showed me where to sign, and before I even had a chance to ask, he was telling me they would be refunding me the two months of premium I had already paid, and the check will be on its way within the week!

I was so pleasantly surprised at how smoothly it went and I felt pretty silly for having been such a nervous wreck. No worries though, it’s done now and I can move on with the rest of my week. Is it really only Monday still?