Category Archives: Cochlear implant

School is back in session

This past week has been a challenging week. I was hit with some pretty crummy news on Friday, but I’m dealing with the situation and am trusting God at every step along the way. Pray for me, if you would.

We recently informed the kids they could no longer play video games all day long. From the hours of 10 am to 3 pm on weekdays, they are not allowed to be playing video games. Instead, they need to be cleaning their rooms, completing their regular weekly chores, and doing schoolwork. If all those things are done and they are feeling bored, they are welcome to do extra chores, take the dog for a walk, read a book, etc. Now if they have everything done and they’ve not given us any attitude, we are willing to negotiate extra video game time. Because we’re not monsters, usually.

We’ve known that the teachers at our kids’ schools have been working feverishly to establish online learning programs for the kids, so we’ve been warning them that the corona-vacation is ending any day now. Well, that day has come. We received instructions from all the teachers this week, and tomorrow morning we’ll have our first round of online meetings with teachers. I’m excited that the kids will have something to be working on that’s more engaging then say, Minecraft and Roblox, but I’m so nervous about how this new format is going to work. This is new for everyone so I’m hopeful that we can all be patient and gracious with each other. Again, pray for me.

I don’t know if I had mentioned, but we are still meeting for Bible Study Fellowship, only we meet on Zoom in order to comply with the social distancing. It’s worked out rather well, but I do miss seeing my ladies in person. We only have one week left as a group, and that makes me kind of sad, but relieved at the same time. Especially with this online learning for the kids ramping up. I had decided back around the Christmas break that I wouldn’t be returning next year to be a group leader, but I haven’t told my group yet. I don’t think they’ll care much. People hardly ever get assigned to the same discussion leader. And Lord willing, they’ll still see me around at regular Wednesday classes.

Oh my gosh, y’all. It snowed yesterday. Seriously. I woke up to see the ground covered in white stuff. It was a crazy day. And then here in Michigan we had a bunch of people protesting at the Capitol, which is all political nonsense that I try very hard not to get mixed up in. I absolutely despise politics and I know that probably makes me less of a grown-up, but I don’t care. I just want to stick my fingers in my ears (or just take off my cochlear implants, HA!) and pretend for awhile that it’s not as screwed up as it is. Don’t ask me how I went from snow in April to politics. All of it’s bizarre, and beyond comprehension. Moving on.

I have done almost no writing throughout this quarantine business because, well, it’s hard to write when your mind is distracted by a global pandemic. So I hear. What I’ve been doing instead is reading books and listening to podcasts. I’m actually finishing books I had started but was unable to finish in time. I recently finished The Boys in the Boat, The Greatest Generation, My Grandmother Asked Me to Tell You She’s Sorry, The Glass Castle, and Know My Name. Many of the books have been audio versions, which I find refreshing because they give my eyes a rest, and I can crochet while I’m “reading”. True multi-tasking!

The other hobby I have, at night when I’m too tired to do much of anything, is watching tv on my laptop (the smaller screen helps so I can see most of what’s going on while I read the captions). I have discovered an absolute gem for mental health and getting to sleep at night – Golden Girls reruns on Hulu. Check it out, and let me know if it doesn’t make you smile.

I’m hoping to get out this weekend and run a Bob Ross themed virtual 5k. We shall see. I haven’t run that far in awhile so it might end up to be a lot of walking. The original plan was to run this with friends, but now that we have shelter in place orders, that’s no longer an option. So I’m just going to run three laps around my neighborhood, and call that a race. I may even wear the bib!

I hope you are all doing well, and are safe and healthy. If you’re feeling a little lonely and blue, watch some Golden Girls. They’ll never let you down.

Infusion day

I’ve been a little nervous about this upcoming infusion, as so much has changed from 4 weeks ago. We are now under a shelter in place order to stop the spread of the coronavirus. Essential workers and activities are still allowed, but people everywhere are taking all the advised precautions. I’m wearing a hand-sewn paisley face mask a dear friend dropped off for me last week, as well as a pair of latex gloves.

My pretty paisley mask

My husband dropped me off, and we tossed virtual kisses at each other as I got out of the truck. I walked into the cancer center, where my infusion center is held on the 2nd floor. In the entrance area, between two sets of automatic double doors, a man is sitting on a bench, wearing a face mask. I walk through the interior double doors and I’m summoned to a Purell stand and asked to sanitize the latex gloves I’m wearing. The woman at the station then asks where I’m headed. When I tell her the infusion center, she informs me that they have their own procedures and will ask me the necessary questions and check my temperature. I’m wondering if she can read my timid hesitation and confusion through my half-covered face.

I took the elevator this time, to get to the second floor. I usually take the stairs, but I still have poor balance and wanted to avoid needing to touch the handrail, even though I was wearing gloves.

On the second floor there are two women blocking the check in area. They are standing at makeshift stations, tall, round tables holding boxes of face masks. Each table is proceeded by a line of red tape on the carpet several feet away. This is where I’m asked politely to stand. Everyone is wearing a white face mask. I wait patiently for my turn.

When it’s my turn I’m instructed to remove the mask I’m wearing and put on the mask they have provided. They said I could wear my mask over the white mask if I wanted, but I declined and put it in my purse. I’ll save it for another day. I’m asked a series of questions and my temperature is taken, and the woman signs the form for me. So I don’t have to touch anything.

Once I’m cleared they tell me to stand at a red paper square on the floor, several feet ahead. I walk over and wait to be called but it’s tricky because the masks muffle all the sound and I can’t read lips that are covered, obviously. I forget how much lipreading plays a part in my speech comprehension.

A woman far ahead looks in my direction and points at me, because it seemed clear to her I wasn’t getting the message to come over to her desk. She checks me in, quickly, puts an ID bracelet on my wrist, and then I’m sent over to the waiting area. I find a seat away from other patients, breathe deeply, and wait.

When my intake nurse comes through the doors ahead, she sees me immediately and I can tell from her eyes that she’s smiling. As we walk back to my corner station, she mentions that it’s probably hard for me with all these masks on. She remembers me well; I’m a regular at this place. I say yes, that I forget how much I use lipreading until it’s not available anymore. It’s not impossible to understand, just a little more challenging than normal. Nothing I can’t deal with.

To be perfectly honest, the rest of the infusion went just as usual. It was a bit strange to see everyone walking around with face masks on, but I didn’t feel a heightened sense of dread or anything. It felt like business as usual for everyone. For all the nurses and staff, this has become their new normal (for now, at least) and they are well adjusted to it. Once I was sitting in my infusion chair, I felt completely at ease and had no reason to be fearful. And once I had my mask on properly, it was actually quite comfortable to wear. To quote the Dread Pirate Roberts, “I think everyone will be wearing them in the future.”

Dinnertime

I’ve always been a planner, and for the last several years I have established a routine of planning our meals on a weekly basis. I know meal planning is not for everyone, but it just makes things easier and way less stressful for me. With that last grocery trip, we are set for at least two weeks of meals. And since all the events have been cancelled, I now have something to fill out my fridge calendar:

But that’s not all the fun I’ve been having! Thursday I had a video visit with my new cochlear surgeon. We needed to meet so they could “establish care” which I guess just makes things easier when working with the manufacturer of my implants, especially when it’s time to upgrade to the newer model.

This coming week I have my regular Tysabri infusion. For the first time in years, I’m nervous about going to this. My last infusion was just days before everything shut down, but now we are in full blown shelter in place status and I am worried that I might pick up the virus and bring it home to my family. But my husband and I both agree (as does my neurologist) that the risk of another MS relapse is a far greater risk, and so I must get this infusion. The last time I missed a dose, I lost 60% of my vision, permanently. So I’m going, but I am going to be as safe as possible. Rather than riding the Spec-tran, I’ll be dropped off by my husband. I’ll be wearing an N95 mask (he had a few in the garage that his dad reminded him he’d given him awhile ago) and rubber gloves. I told hubby I thought I would look like some kind of freak walking into the infusion center and he said probably not, because everyone else there will be dressed the same. I don’t think the nurses are going to give me any grief over being too careful. So I’m sure it will be fine, but if you wanna mark your calendars to pray for me Wednesday, I’m sure it wouldn’t hurt.

I’ve really been enjoying our family dinners lately. We’ve always eaten together as a family, nearly every night, but family dinnertime feels different now. Our schedules are clear, so we are far less rushed. Nobody has anywhere they need to be. A couple nights ago we were all sitting around the table and legitimately enjoying each other’s company. We were talking about what we planned to do, where we planned to go after all this is over. My daughter brought up some great memories of a trip I took her and her brother on, to visit downtown Lansing. Together, we reminisced about all the places we visited that day and what fun we had. Then she said we should go again. Sigh. I love that girl. She’s a city girl, just like her momma.

I worry sometimes about my daughter because she’s extremely introverted, and she’s spent almost every waking hour of this quarantine holed up in her room, playing Roblox. But then she comes out and chats up a storm, telling me all about the fun she’s having. The other night we watched Dr. Strange together, at her request, and after the movie was over we discussed our favorite parts of the movie.

So, I feel like I’m bonding with each of my kids, in entirely different ways. It’s been really nice. This quarantine stuff certainly stinks, and it sure wasn’t what any of us would have planned for our lives, but I’m thanking God for the opportunities it’s giving us. Every storm cloud has a silver lining, and I hope that you are finding your silver lining amidst this storm.

Another List?

Things I’ve learned about myself in the past couple of months:

  1. I really like the band Cake. Like, a lot. Pandora keeps playing their songs and I have loved every single one of them. Most of them I had never heard before, so it’s cool to find “new” music that is also enjoyable (with the cochlear implants and all…)
  2. I feel a lot more human when I’m wearing a pair of jeans. As opposed to skirts or leggings or khakis. I know some people don’t find jeans comfortable, but I’m not one of them. Jeans are good. I’m keeping them.
  3. That’s it. Just those two things. So not really a list, I guess. Sorry if I led you on. I’ll keep writing stuff for you to read, don’t worry. I’m thinking my next post will probably be about food and my wonderful cooking. So stay tuned, I am here for you!!

Good days

I came back from tonight’s Financial Peace class really energized and excited. It was the baby step 2, dumping debt lesson, and that one always gets me a little emotional. We had really great discussion and everyone seems to be coming from very different places in their financial journey, yet we were able to have mutual respect for each other and a cohesive, lively discussion. I’m super stoked and looking forward to next 7 weeks.

Also, I’ve been working hard to not hate cooking lately. I get myself psyched up for each meal by streaming music to my cochlears and I wear a fancy apron and I dance while I’m cooking and stirring and measuring. When I started this ritual a couple weeks ago I made several really bonehead mistakes and screwed up some of the easiest dishes. Tacos, mashed potatoes, rice, stuff like that. My family takes it in stride but I think only because they love me and I laugh with them when they are laughing at me. It’s all good. Tonight we had baked herb chicken with salad and stuffing. I didn’t mess anything up and nobody complained so it’s a half win. If anyone had raved about it I would have called it a winner and made a note to add it to the list of regulars, but it was just meh.

I’m doing really well lately, all around. I’ve got some minor health issues but I’m working with my doctors to get to the bottom of things and I’m not in any pain or discomfort. For now, anyway. It comes and goes but it’s nothing serious.

That’s a little cryptic but I’m leaving it there. I’m trying to focus more on positive things that are happening around me and less on the other stuff. For now. We’ll see how long I can keep up with it. Ha!

Oh! I’ve been stuck writing my memoir but I received some great encouragement from other writers. One, it’s a very long process and I would do good to stop rushing myself. Two, I need to keep my primary purpose in writing the book front and center. And three, I need to write an outline. That last one seemed so simple, I was kicking myself for not having thought of it, but sometimes it’s hard to see clearly when you’re in the middle of it. So this week that is my writing goal. Start writing an outline.

That’s all for tonight folks. I leave you with these nuggets of wisdom given by our guest preacher at church today:

“Wilderness living is designed to make us willing.

Even Jesus had to be perfected through suffering.”

How my phone is like me

I use my phone every day, all day. It has tons of useful features to support my life. It helps me keep myself and my family on track. Lately I had a thought I wanted to share. My phone is like a metaphor for my life. Let me explain why.

I was canoeing a couple years ago and the canoe tipped over. My phone was in a Ziploc bag, in my running belt, and water leaked into the bag, damaging my phone. I was able to soak it in a bag of rice for awhile, which restored most of its functions, but the one thing I can’t do is use the back button and that other one on the bottom left (the one that shows you all your open apps).

However, I found a workaround by using the s-pen to use those two buttons. The phone responds to the s-pen, just not my finger. A couple weeks ago I was replacing the pen into the phone and it snapped on me. It still works the way the pen should, it just doesn’t have that spring action needed to get it back out of its slot. So now if I want to use my back button, I need to bang the end of the phone on the heel of my hand in order to get the s-pen out. Other than that, the phone works great! It’s kind of ridiculous and it makes me chuckle.

It looks like a completely normal, functional phone. It just has a few broken features but there are workarounds. And that is a metaphor for my life. I am deaf but I have cochlear implants to help me hear. I am visually impaired but have friends, family, and public transportation to help me get around. I look completely normal, I just have a few broken pieces and I have my workarounds I’ve discovered I can use in order to continue functioning. So there. That is how my phone is like me.

What day is it?

It’s been that kind of week. I’ve been confused about the day all week. But, all for good reason. None of it is because I’m drunk, so I’ve got that going for me. Not being drunk is always a plus.

But also, I’ve just had a lot of great things going on! My son’s baseball season is in full swing (excuse my accidental pun), I was able to visit with several really great friends this past week, and the weather is warming up so we leave the doors and windows open and the breeze and the birds chirping is it’s own kind of intoxicating. Let me just note here how truly grateful I am to be able to hear those things, the breeze and the birds. Cochlear implants for the win.

My son had some friends over for a sleepover last night to celebrate his birthday (he’s 12!!) and that was fun and not terribly crazy. He has some really great friends. It’s funny to think back on previous year’s birthday parties and how much anxiety I felt leading up to each one. Overwhelming anxiety. This time? None. Zilch. Nada. And I don’t know if that’s because the kids are older or if I’m in a better state of mental health but I suspect it’s a bit of both. I know it’s a lot of the latter though, because I can’t even remember the last time I had an anxiety attack. And that there is another reason to be grateful.

I’ve had a lot on my mind lately. Tons. It might not seem like it because it doesn’t always make it here on the blog but my mind is constantly in a state of gathering ideas and formulating posts in my head. I just finished a book about writing by Anne Lamott, Bird by Bird, and I’m convinced now more than ever that deep down, I am A Writer. It’s what I long to do, nearly 24 hours a day, 7 days a week. I wake up and think, “what did I just dream about? I could write about it.” I want to keep writing, whether anyone is reading or not, because maybe one day I will write something that touches someone in a good way and makes their life a little better than the day before. I can only hope.

So. Today is Saturday. Most of the day has been extremely relaxing. A lot of cleaning up from the slumber party and then just your regular putzing around. I took a wicked nap, ended abruptly by the dog barking her head off when hubby came home from an afternoon at the shooting range. I’m pretty sure I jumped a couple feet straight up from the bed.

I did go for a run yesterday with a friend, but my knee started hurting in the 3rd mile, so I know I still have some healing to do from when I messed it up a week or so ago. I’m pretty confident it’s IT Band Syndrome, but I think it might be a good idea to see a sports therapist to check it out and give me some pointers on my running form. Also, I need more strength training if I’m really going to do this half marathon without damaging myself, so I’m looking at getting back to CrossFit. I had sort of slithered out of going a few months ago so I’m in contact with the trainer to see if she’ll forgive me for going dark on her and let me come back.

Tomorrow is Sunday! Back to church, and this week we’re working in the kids’ church so I get to play with the little ones. I miss hearing the sermons but I do love the babies. I can never understand what they are saying but a couple of them know some basic ASL so that helps a lot.

I was going to sign off but then I was looking through my pictures and see that so much happened and I totally forgot to blog about it! Like the Walk MS, and maybe other things. I’ll get to it. Pinky promise. Let’s talk again soon.

Gorgeous day for a run

So I was anxious to get out and run today. I want to stick with my half marathon training plan so I don’t get too far behind. However I let my anxiety cross right over into stupidity and I forgot to stretch before hitting the pavement.

Of course I paid for that.

After 6 miles my knees were in so much pain I had to walk the rest of the way. I’m pretty sure it was my IT band causing the pain, so I just iced the knees and took an anti-inflammatory once I got home. I’m gonna be sure to stretch next time, always, and hopefully I haven’t done any permanent damage. So glad I took this happy smiley selfie half way through! It really was a beautiful day to be out and about. Wind in the trees, birds chirping. I heard it all and I’m still so grateful that cochlear implants allow me to. Super super great day. God is good!!

Coffee talk

I was at the neighborhood coffee shop today and had a pleasant conversation with the barista. She remembered me (and my drink, a mocha with hazelnut and almond milk!) from the last time I was in there with a friend of mine. She had wanted to ask me about my cochlear implants, and hoped I didn’t mind. Her son has partial hearing loss in one ear, and she’s been encouraging him to get a hearing aid, but he doesn’t feel he needs one. That and he’s a high school student and probably fears the ridicule he might receive from other students. This is a shame, because there is absolutely nothing to be embarrassed about.

I wear my cochlear implants proudly, and have never felt self conscious wearing them. The barista, Dana, was nervous to ask me about them, but I told her I love it when people ask. In fact, I wish more people would. I know people must be curious. I know I would be. They are fascinating in the way they work, and not a lot of people really know much about them.

Dana was under the assumption that my hearing with implants would be much better than normal hearing, but I informed her that was not the case. Not to minimize the miracle of the invention, but scientists just cannot outshine God’s invention of the human ear. What I hear is clear, yes, but it has a different quality to it. No, it will never be the same as normal hearing, but having the gift of conversation back after losing it so quickly more than makes up for that disparity.

Dana also found it especially fascinating that what I hear now does not come at all from my ears, but from the microphones built within the earpieces. It’s true, my ears are now just placeholders for my glasses and my cochlear processors. You know when you clean your ears out with a Qtip and it makes that funny noise? Yeah, I don’t hear that anymore. Kinda funny, I suppose.

Anyway, it was good to chat with a friendly stranger about how well the cochlear implants are working for me, and to have someone share in the excitement. I will never take my hearing for granted, ever. I am super grateful for what I have. ‘Nuff said.

“A man was bragging about his new hearing aid and how great it was and how well he could hear with it. His friend asked what kind it was and the man responded, 12:30.”

This may end up to just be be a brain dump, what’s on my mind in no particular order. Just a warning.

I’m doing okay with half marathon training. However, on one of my runs last week, Tuesday, I managed to trip on the seam of the sidewalk and went tumbling hands first to the concrete. Luckily I’m short, 5’1″, so it wasn’t much of a fall. I was certain in the excruciatingly painful moment that I had broken my right index and middle fingers. I lay on the ground, whispered a few f bombs, breathed my way out of a crying fit, and stood up slowly. I walked slowly toward home, assessing the damage as I went. I was scraped and bleeding in several spots, but thankfully nothing was broken. My cochlear implants were even in place through it all, thanks to the headband I wear over them when I run. Turns out I just jammed the fingers pretty good and a nurse friend told me it could take up to six weeks to fully heal. She said I can speed up the process by icing it daily, taking Motrin for the swelling and pain, and wrapping it to keep myself from bending the fingers. I’m doing all of these things and the swelling already seems to be better.

I finished a crochet Afghan recently for one of my nephews and I bought yarn for my next project. I’m anxious to start it but I don’t think I’ll be able to until these fingers heal. Such a bummer. Can I use that excuse to get out of folding laundry or washing dishes? No? Fine. You’re no help.

Oh! I’ve discovered a new thing. Well, new to me. Sort of. Podcasts. I know this is not new because I used to listen to several when my children were just babies. Somehow I had time for that then. Well now I hadn’t considered them because I figured they would be too difficult to understand with cochlear implants but I started listening to my weekly Bible study lessons online, while I read along with the pdf version. It turns out I can understand quite well! I need something to listen to as my training runs get longer, and music just wasn’t cutting it because the tempo always screws up my pace. Plus I’ve run out of music I enjoy, and I can’t just keep replaying the same playlist, that’s so boring! So I tried running while listening to the Bible study lesson and it worked great! The time seemed to go by much faster and I was able to keep a steady pace and still focus on my form as well.

So I’ve downloaded a podcast app and subscribed to a few stations, including the Dave Ramsey show, which has always been a favorite. I have to stay sharp for the Financial Peace class I’m leading so that’s more for business than for pleasure (though I’ll admit I do find it entertaining, cuz I’m a nerd).

I have other thoughts and things but it’s way too late for me to be up so that’s all for now. Until next time…