Category Archives: Cochlear implant

Cochlear implant, Housekeeping, Kids

Bilaterally bionic and neurotic

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Yesterday was an exciting day. Yesterday I had my 2nd CI (left ear) activated! I admit the event lacked the luster the 1st one did, but that’s to be expected. The first one took me from deaf to hearing, this second one will take me from “okay” hearing to “better” hearing. I am still forever grateful, but I think the highs of being bilateral will come in bits and pieces as time goes on, as I recognize the little things I may have forgotten I was missing. On the way home from the activation, I noticed I could hear the blinker on the truck, something I hadn’t heard in quite a while, because it’s on my left. See? It’s the little things.

I went to bed around 9:00 last night. I don’t normally go to bed that early, but I was feeling pretty crappy. I had been coughing most of the day, so I had stayed away from caffeine. Good for the cough, but resulted in a major headache. That coupled with some stomach issues and the excitement of the day left me quite a mess. However, the sleep must have served me well, because I was pretty wide awake at 6 this morning, and feeling much better. Even wide awake, my body doesn’t move so well, but I was up by 6:30. I put both my ears on (!!) and moseyed on out to the living room. Luke (my early riser) was on the couch, watching tv. We chatted for a bit, then I came into the kitchen to make breakfast. And of course, instead I am writing.

It’s day 3 of summer break for me and the kids. This means less work for the kids, but more work for me. No more lazy days, no more morning naps, and no more spotless floors. I like keeping the house clean, but I realize that’s going to become more difficult with the kids home. One of my hopes as a parent is to teach my children how to clean up after themselves, but that’s not a quick process, right? I think repetition and years of patience are the keys here. Those and being a good example, of course. But this summer, I don’t really have the energy for keeping up with my own high expectations. And this is how I plan to deal with that ugly fact: I’m just going to pretend like we’re camping! Every time I step on a wad of dirt or pile of crumbs and that frustration rises within my belly, I’ll just pretend like it’s totally normal to have dirty feet. Dirt in the entryway? Crumbs in front of the couch? It’s okay! We’re camping!! I just won’t tell the kids, because then they’ll want to pitch a tent in the living room, and that would just be going too far.

Have I become that neurotic? Sadly, I’m afraid I have.

Cochlear implant, Coffee, Housekeeping, Kids

Field trips, coffee, surgery…

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Well, I never did blog about those cookies, did I? Maybe next time. I have a lot on my mind this week.

I accompanied my son and his class on a field trip to an indoor aquarium. We rode a charter bus, and Luke discovered that the on-board restroom is not as glamorous as it sounds. The aquarium was located in a large shopping mall, and since our bus let us off at the wrong entrance, we were able to scurry past all the wonderful-looking shops on our way. Luke seemed to enjoy the aquarium. There were a lot of neat things to see – jellyfish, stingrays, turtles, etc – and Luke enjoyed it all, but he made a point to tell me that his favorite part of the day was spending it with me. My favorite was hanging out with him too, and that just melts my heart to hear it from him. Oh, but my second favorite part was finding a Tim Horton’s right there inside the mall! I had not had time to make coffee that morning, so that was the icing on the cake for me 🙂

That was Monday, and I can’t remember what’s happened since. Mostly soccer games, doing laundry, walking to the bus stop, and a little eating and sleeping in between. I’ve been feeling like I have to stay “caught up” because I’m going to be out of commission for a bit. Why, you ask? Because tomorrow I am having surgery to get my 2nd cochlear implant installed, that’s why! And this time I’m pretty sure it’s for real. The UTI that prevented me from having surgery last month is gone, and I had the lab test done last week to be sure. So today is a day of making sure the floors are clean and the laundry is caught up and then I’ll be packing for tomorrow.

Wish me luck, pray for me, send soft cookies, whatever! I’ll be back in due time.

ASL, Cochlear implant, Deafness

I am learning ASL.

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I am learning ASL. S-l-o-w-l-y. It’s not easy learning a new language. It’s even harder when it is a visual language, and you are visually impaired. But, Helen Keller learned to finger spell (as well as countless others) so I am determined to continue with this. One itty-bitty step at a time. And I am hopeful that one day it will be useful. I don’t plan to need to carry on full conversations with it, but I do think it can be useful in communicating important messages to me those times when I cannot hear or recognize what is being said. There are times I’m not wearing my implant, like when I’m getting ready in the mornings, or settling down for the night. Say the battery dies while we are away from home, and I didn’t bring a backup. Also, there are times when the CI just doesn’t work well enough. Like when we are in crowded, noisy rooms, or when the dog insists on barking while we are trying to have a conversation.

All of that is to say that I believe this will be worth the enormous effort and time. It may take longer than I wish, but that is okay. I’m not going anywhere.

Oh! By the way, my 2nd CI surgery was rescheduled for May 8th. I will go next week for a urinalysis to be sure I’m clear of that nasty infection (which I think I am). I’m excited, but I’m not getting all hyped up like I did last time. Keeping my head out of the clouds.

One week following the surgery I am planning to participate in the SE Michigan Walk4Hearing. I don’t know if I’ll be able to walk the entire distance, but I’ll be there to try nonetheless. This walk is held to support the Hearing Loss Association of America and raise awareness about hearing loss. If you know someone who is affected by hearing loss (which you likely do), would you please consider donating to the cause? You can read more about it and donate at my Participant Page here: SE Michigan Walk4Hearing.

Aside from all of that, I am well. I hope you are too. It’s Friday! Enjoy the weekend!

Cochlear implant, God speaks, Multiple Sclerosis

Trusting God’s Timing

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Here’s what I love about God: He shows himself in the timing of things. I don’t even know if that’s Biblical, but it seems to happen for me. Maybe it’s just how He likes to communicate with us who are “type A” and live by their calendars. It certainly sends a clear message to me, that is for sure. April 13th, which was the day 2nd CI surgery was originally scheduled, means nothing to me. And when I was in that hospital bathroom to give them a second sample for testing, I was praying over that cup of pee. You can laugh at that – I did – but it’s true. I was praying that if the surgery was meant to be that day, that He would remove all infection from that cup. And with that prayer, I told God that either way, I was trusting in His timing, not mine.

Well, if you read my last post, you know what happened. It was not to be on April 13th. Much has transpired since that day, so let me try to break it down for you.

  1. The insurance approval was effective until May 10th, so the surgery was rescheduled for May 8th. My 1st CI was implanted on May 9th, 2014.
  2. My surgeon wants me to get another urinalysis done one week prior to the surgery.
  3. I have been taking Vitamin D supplements per my neurologist’s recommendation, and when I finish them I need to get new blood work. I take my last pill this week, which means I need to get the blood work done next week.
  4. My Tysabri infusions for MS are every 4 weeks, and my next one is due April 29th(next week).

What this means is that my infusion, blood work, and urinalysis, all have come due in the same week, the week prior to my 2nd CI surgery. A 2nd CI surgery that will come one year, almost to the day, after my 1st CI. And! All three procedures/tests can be done at the same building, which makes for seamless Spec-Tran ride scheduling.

All of these things, combined, make this Type-A girl’s heart happy, and assures me that God really is in control. Because I could not have planned it better myself.

Exodus 14:14 – “The Lord will fight for you. You need only to be still.”

Cochlear implant

A Disappointing Day

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I was scheduled for surgery today. I blogged all about it, I posted on Facebook, I really built up some excitement. I LET myself get excited. I got my hopes up. And it wasn’t to be.

I was informed late last week by Dr. Avery that I had a UTI, and was put on antibiotics that day. This would explain all the bladder trouble I was having. I had been blaming it on MS. Sorry, MS. It wasn’t you, after all. It’s just strange because I had lots of UTIs as a child and this was nothing like them. I had zero pain. But, I was having irritating urgency and that went away the second day on antibiotics.

So, I wasn’t really worried about it affecting the surgery. I had told the woman giving me my surgery instructions about the infection and the antibiotics, and she said to just make sure to take it the day of the surgery. To keep fighting the infection.

That should have been my clue, my warning that this may not happen.

Only this morning I was still very excited. I made all my preparations the night before, so this morning I was ready to go. The drive there was filled with text messages from well-wishing friends and family, and I knew plenty more were praying for me. Check-in at the hospital went smoothly, and I changed into my gown, gave them a urine sample, got plugged into an IV, talked to the anesthesiologist and then my surgeon.

Then we waited. At this point we were close to two hours into the pre-op process and I was still feeling okay. I wasn’t looking forward to the recovery process after, but you could say I was ready to get this done.

And then it all fell apart. The nurse (the same one I had last year who asked me if I missed hearing) told me I was still showing signs of an infection, and they wanted me to give another sample just in case. This is the point I started worrying, though we both know worrying does nothing. Mike kept telling me it would be okay. I tried to go along with that sentiment, but it’s hard. After about 20 minutes my surgeon walked in with the bad news. I would not be having surgery today.

It’s not entirely bad news. I’ll still have the surgery, but they want to be safe. If I were to have it, there is a small possibility the infection would spread, and if the infection ended up in my skull, it would mean having to take the implant out, clear the infection (which may or may not be an easy process), then re-implant. The re-implant process didn’t even sound like a sure thing. He said it was a small risk, but it has happened before, and the aftermath was a nightmare. Lots of trips back to the hospital and lots more surgeries. I wanted the surgery today, but I’m only trying to do this one more time. Remember, I told Mike after the first implant that I did not want to do this again. Surgery is risky and painful and scary, but this second implant will be worth it. Still, I only want one surgery. It’s better to be safe, than sorry.

Darn that nurse taking out my IV. She was so focused on explaining to me why “better safe than sorry” was a good rule (as if I were a child needing further explanation) that she was not focused on being careful while removing the needle. OUCH.

I did cry at the hospital, but I was pretty much done when we got in the car to go home. I was just so disappointed. I felt silly for getting my hopes up so high, only to be let down. But Mike reminded me that none of this was my fault, none of it was in my control, and all of it is a minor inconvenience in comparison to what could have happened had they not checked for the infection.

It will be okay. I will still have the surgery, and hopefully soon. Today we ate, we shopped, and I took a wicked nap. All in my “surgery outfit”, bright green Crocs and all.

Cochlear implant, Deafness

Going Bilateral

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Tomorrow is a big day. Tomorrow I am going bilateral with a second cochlear implant (the left ear). Here is how it all went down:

I took an ENG in December so that the surgeon could determine that a second implant would not be detrimental to my balance. I passed with flying colors, and had been waiting since that time for a call to schedule the surgery.

I was told then, in December, that the only thing we needed yet was approval from the insurance company. With the first surgery this all seemed to happen fairly quickly, so when March rolled around and I hadn’t heard anything, I was concerned. I emailed my audiologist to find out what the status was, and she told me that the surgery had been approved some time ago (probably around the holidays), that it was sent to my surgeon, and who knows where it went from there. In the meantime, the approval had expired. When she tried to get another approval, my insurance company denied it. She told me it was because my insurance changed, but I know that wasn’t true because I got the letter – they forgot to get a proper referral from my primary care physician. Anyhoo, attempt #3 was successful, and I got a call on Good Friday with a surgery date of April 13! Now this was the only date available for the surgery, so we had to take it or leave it. I had to reschedule an appointment with my optometrist to get new glasses, and my husband was able to get his jury duty postponed, and just like that we are ready to go!

All of this to say, I am excited. Losing my hearing was the scariest thing I have ever been through. I lost a lot during that time, but every day I feel like I gain a little bit back. Life will never look like it did before, but I am okay with that. There have been some good changes through all of this. And I know cochlear implants aren’t right for everyone, but it was the right choice for me. Having regained a level of hearing with my right ear implanted has given me back relationships I thought I had lost. Conversations I never wanted to miss. Sounds I never fully appreciated before. From talking with other bilateral recipients, I am hopeful that this second implant will enrich all of that and bring back more conversation and newly appreciated sounds.

If you have read this in time, please be praying for my surgery and subsequent recovery. I hope to recover quickly and get back to blogging within the week!

Edited to add this important link. Please consider helping me reach my goal and donating to the HLAA Walk4Hearing event in May! Go <<HERE>> and read my story and see my progress. Thank you!!

Cochlear implant, Photos

No one is around, thankfully

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I say that while completely understanding the irony here. I’m not shy.

But seriously, what the hell is up with my hair? I washed it about two hours ago, towel dried it, and have been sitting and reading a book since then. And now there is this:

Wild hair

…which may not be a big deal relatively, but I’m not used to it. Mostly because once it fully dries it tends to calm down, and I generally keep it up in a half-ponytail so it doesn’t interfere with my cochlear implant. However, they tweaked the magnet on the headpiece last Tuesday at the audiologist’s office, and it is staying put much better now. The first magnet was strong enough, but caused pain. The second one didn’t cause pain, but kept falling off. This third time is the winner, apparently. I think only other CI recipients can understand the joy in being able to keep this thing stuck to your head. And oh, being able to style your hair in more ways than just the half-ponytail is pretty thrilling too.

The excitement never ends around here. Ha! Good night, my dear bloggy readers!

Anemia, Cochlear implant, Deafness, Multiple Sclerosis

Add blood disease to the list…

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I’ve been really tired lately. For the past couple of months, actually. I just kind of assumed it was circumstancial, or due to the m.s., or a combination of both. It would make sense. Fatigue and balance issues are par for the course with m.s., and we have the new puppy, and we’ve had lots of travelling and family events with the holiday.  So I had been telling myself that’s what it was, and it would ease up.

Only it wasn’t easing up, and I was starting to get very discouraged. I just couldn’t get back to that place of feeling like you have sufficient energy to move. And no amount of caffeine or sleeping seemed to help.

I went to see a new neurologist yesterday, and shared all of my concerns with her. She said I’m doing all the right things (though I am under orders to stop climbing on chairs) and I’m on the best m.s. treatment with my monthly Tysabri infusions. She ordered a gang of blood tests, since I hadn’t had one in quite some time.

She called this morning with some of my test results (while we were at the pediatrician with my son, who has been complaining of headaches and was up last night with headaches and vomiting. She was still waiting on further test results, but the one she was most concerned with was my vitamin b levels (or hemoglobin, or something). Whatever “they” are, they should be at 12. Mine are at 8, which means I am very anemic. Their words, not mine. The lucky thing is that my primary, who my neurologist was advising me to see regarding the anemia, is located on the second floor of the building my children’s pediatrician is in. So Mike called to see if they could see me right then and they were able to! So I left Mike with Luke and took the elevator to the 2nd floor. The primary doctor ordered more blood testing to get a better sense of what might be causing the anemia, prescribed some iron pills, and is setting me up to see a hematologist.

What FUN. After everything I went through last year with the trip to Mayo Clinic, hospital stays, plasmapheresis, etc., I was really hoping for some time off from doctors and testing. That’s clearly not happening.

I’m not exactly looking forward to more medical drama – not to mention the frustration and guilt I feel for needing my husband to take time off work to drive me everywhere – but I am somewhat relieved to learn that I wasn’t just making this up. I wasn’t just becoming a lazy person. There is a reason for this fatigue, and the headaches and dizzy spells. More importantly, there are solutions. Before today I didn’t know the first thing about anemia, but I know now that it is treatable, and depending on the cause, can sometimes even be reversed. That’s a hell of a lot more than I can say for multiple sclerosis. And compared to all of the mess I’ve been through with m.s. for the last 5 years, and the mess I go through daily with hearing loss, anemia looks like a walk in the park.

Now I just have to find the park!

Cochlear implant, Deafness, Domestic Engineer, Family, Friends

Thursday Thoughts On “Normally” and Group Gatherings

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This week I had planned for things to return to “normal”, or a feeling of it at least. I’ll tell you how the week went and you can be the judge:

1) “Normally” I walk the kids to the bus stop. This week it was far too cold to make them walk, so Dad drove them on all but one day. (Walking through the snow really works those leg muscles!)

2) I “normally” eat breakfast, drink my coffee, and work on household chores after returning from the bus stop. This week I took a lot of back-to-bed “naps”, stretching my coffee and meals far into the afternoons.

3) I “normally” Skype with my mom every day. I was lucky to get in one conversation with her today (it was her birthday, so of course).

4) I “normally” have meals planned and grocery lists prepared for my husband every week. This week I had to throw it together at the last minute.

5) I “normally” feel like writing things that people want to read. Something about watching this puppy for “potty cues” keeps me on edge, and I haven’t felt any inspiration to write. I did write one paragraph for my book though. Actually, two, but the second one is only three words so it probably doesn’t count.

Oh, but tomorrow. I have a gang of girlfriends coming over to eat dinner and knit and crochet, and chat up a storm – though I know that won’t be like old times because I can only follow one person talking at a time. I’m excited to see everyone and am thrilled to be able to open up my home for this event. Even if I can’t follow all the conversations, it will be great to see everyone having a good time. Group gatherings are an area that I immediately started avoiding when I lost my hearing, so it has taken quite a bit of courage for me to step back into these situations. The fact that it’s in my home certainly helps, but also these are dear friends of mine who I know are sympathetic to my new challenges. I have wonderful friends.

So Friday night should be some good times. Saturday we have a belated family Christmas gathering, and Sunday I may possibly have a date with my husband. Then the kids have a couple full days and a half day off from school the next week. All that to say, “normally” is out the window. Forget normal, let’s just have fun!