All posts by Little M.S. Runner

Forty-something, married with two kids and two dogs. Trying hard to live every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ.
Cochlear implant, Deafness

Phone training

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I am super excited! Kids started school today, and my head is swirling with ideas and plans for how to best use all this time to myself. Cleaning and meal planning is a given, but I have other stuff I want to get done. First and foremost, I want to practice listening with my cochlear implant. Which will be much easier now that I don’t have other sounds around to distract.

I really want to get to a point with the phone where I am confident (i.e. not afraid) to answer the phone when it rings. The first step was reviewing the instructions for my ComPilot remote, which pairs with my implant via Bluetooth. Easy peasy, right? Well, I didn’t realize that I can actually answer the phone with the remote. Should be super easy, as long as I have the remote with me, and turned on. So I have that new knowledge in my back pocket (along with my phone… hehe) and will practice listening in preparation. I did some reading on the Advanced Bionic (AB) forum at hearingjourney.com, and found that there are programs out there, provided by the cochlear implant manufacturers, to assist us ci recipients with learning to use the phone. So Cochlear has an actual phone line dedicated for this purpose. You call the number, choose the option, and listen. They even have a pdf for each day’s recording, so you can read along. See?

http://hope.cochlearamericas.com/telephone-training-aug31-sept6

So if I can do this every day, over time my brain will learn to recognize speech. And from here, things can only get better! (Ain’t that right, Howard?)

Family, Vacation

Home again

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We went camping. With our church family and with our children. Our kids had a blast. One of the memorable parts for me was staying in the caboose. All the cabins were taken when we signed up, so that was our only option, and it turned out to be the best one! What do you mean by caboose, you ask? Well, it’s just that. A caboose. Equipped with bunk beds and a futon.

The caboose!

It was kind of a hike to the restrooms (Cuz we ladies do NOT use the porta-potty. No way, no how.) but we managed. I brought my cane, and I’m glad I did because it was very useful keeping me upright over all the hilly terrain (Well, mostly. I only fell three times).

Most kids love to camp, and ours are no exception. So we do it for them. We are not crazy about camping, and the two of us do not camp well together. I am generally a morning person, but something about waking up on a crumb-coated futon with welts on your face from your wiggly, sound-sleeping, seven year old sets me on the wrong foot. Not to mention the moment I recall that I did not bring a coffee maker and have to roam the campground with my empty traveler mug, peddling for hot coffee. Oh, and did I mention the 15 mile hike to the bathroom?

I think we did some fun things while we were there. Well, the kids anyway. They swam, rode bikes and scooters, slid down the biggest slip ‘n slide you’ve ever seen, and even went zip-lining 30+ feet off the ground. When Natalie saw that her brother was getting ready to go, she wanted to go too. No fear, this child. She is our daredevil. Four years old, and such a girly-girl, but she has no fear. She trekked right up to the top, feigned hesitation and fear for the zip-line operator, and then when it was her turn, off she went. She had a blast! And her only complaint was that it went too slow. Crazy girl.

Let’s see… We also had a big potluck with the church folk. Now, I grew up Methodist, so I’ve been to my share of potlucks. This potluck was by far the most memorable. Because as soon as everyone got the food set up, it started to rain. Hard. So I scrambled to get my food (yummy salad, by the way) and squeeze in with the crowd under a camper awning to eat it. Craziest potluck ever.

All in all, it was a memorable trip, and we are glad we went. We are also equally glad to be home. I’m sure I’m missing a lot of great details about the trip but my head still needs to unwind. Tomorrow is the first day of school! Again (it happens, like, every year)!!

Summer is ending, y’all. What was your favorite part?

Cochlear implant, Music

Finding music

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I cleaned out three purses today. Yes, three. And that is just scratching the surface. I won’t even tell you how many purses I have hanging in the closet.

Anyhoo, It felt good to clean them out, and even better to have found my old ipod. The one with all of my favorite music on it that I somehow lost two computers ago. Maybe. Well, I was able to pull up all the songs on my laptop so I can listen to it through my CI remote (The Phonak Compilot) IF it successfully connects. Which most of the time it does not. But maybe I just need to restart. The additional good thing about this is that I was able to upload many of the songs from my laptop to my Amazon cloud drive thingamajigger, and from there I can listen from (and possibly download to) my Kindle. Which almost always connects to the ComPilot. Yee. F-in. Ha.

And now I can start to listen to the songs I know and “practice” hearing music again. And hopefully enjoying it too. I know it’s possible because other CI users say it is, and I have had blips of musical enjoyment here and there. Like yesterday in the truck when Beastie Boys’ “Pass the mic” came on the radio. That was super fun and brought back lots of great awful memories of my young adulthood. I listened to Beck’s “Loser” just now and that was pretty fun. Crazy stupid lyrics that I will probably never forget. So here’s to future CI joy and music enjoyment.

Get crazy with the Cheez Whiz!

Food, Kids

Bad Idea

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Natalie likes to help me. With just about everything. She often helps me make coffee in the morning, and today was no different. Only I had set it up the night before with the timer, so there really wasn’t much to do. So she picked out my coffee mug for me and brought the half & half out of the fridge. Both were waiting for me on the counter, next to the pot of freshly brewed coffee. I so love this girl. And just when I think she “gets” me, she says things like this: “You should sometimes not drink coffee.” When asked for clarification, she said (with an air of astounding gravity) “just skip a day of drinking coffee”.

Uh…. NO.

God speaks, Vacation

Abbey Trip 2014

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I have just returned from my annual trip with my sister to an Episcopalian monastery. This was our 4th trip together, but I started going there more than a decade ago, and I’ve lost count how many times I’ve been. It’s truly a time of rest and renewal for us. I did some journaling, but not as much as I would have liked. And since I didn’t bring my laptop, I just wrote it down. No filter, no edits. So what follows here is exactly what I wrote. Reading my writing on a white piece of paper is physically exhausting for me to do, so pardon me if I don’t feel like reading through again and “perfecting” it. Whether it sounds good or not, it’s all true.

Friday:

We made it to the Abbey. I’m teetering on the brink of a flood of tears. Mixed metaphors, I know. I just have all this sadness built up. I think that’s why I keep getting so frustrated, and Mike keeps asking me what is wrong. I always say it’s nothing, but that’s a colossal lie. I am sad and scared. Not angry, because I don’t know who to be angry at. Just really scared for my future, and sad for what I am missing, like pictures Natalie draws for me. And not being able to really see my surroundings. That frustrates me – constantly. If it were all gone, if I couldn’t see any of it, maybe the frustration wouldn’t be there. Because I wouldn’t be subconsciously trying to see it all. Maybe. Not that I’m wishing for that. That is maybe what scares me the most. Losing my eyesight completely. Losing the ability to see my family’s faces and watch my kids grow.

Well, I let the tears fall, and it didn’t end in a sob-fest. I’m sure there are more to come, but for now I feel like I can breathe again. This is good, writing. I didn’t bring the laptop so this is all I’ve got. It’s slower, and harder to read, but I guess that’s good as it allows me time to let my thoughts come through. Clearly.

I need to eat.

We went to Vespers and Mass already. Had lunch, went to buy chicken and steak. Not in that order. I took a nap too. I can’t believe I forgot the steak! This weekend seems cursed. There was a huge accident on the way here that prevented us from getting onto I-94 – cranes had to be used to move the semi trucks. But we are taking the curse in stride. This past year has dealt us both a shitty hand, but we are determined to make the best of it, despite the obstacles.

Just like this weekend.

10 pm: Heading to bed! Will be up at 3:30 am for the 4 am Matins service. Good day 🙂

Saturday:

Was up at 3:30 am for Matins (thanks to 3 cups of coffee the night before, I woke up all on my own. Slept from 10 pm to 12:30 am, and then every hour after that. Not too bad. Then went back to sleep after Matins, and woke up to the smell of bacon (for the quiche), just in time for 8:15 Mass. And yes, they do communion on Saturday.

I’m not sure what to do with myself at this point. I want to make the best of this time, but I want to get rest and relax too.

Next weekend we go camping with the church. I’ll definitely have to make grocery lists and catch up on laundry before then. I’ll wait to do that when I get back home. Because Mike likely would have bought some food. And what fun is coming to the Abbey to make grocery lists?

Now – coffee. Read.

It’s our last night, and after finally beating Kari (just barely) at Spite and Malice, we are heading to bed at 10:50 pm. Tomorrow is Sunday, so Matins isn’t until 5:30 am. Kind of like sleeping in.

Today was a humid day, and my hair shows it. Do you ever catch a glimpse of yourself in the mirror and gasp? That just happened here. Think Gene Wilder and that comes pretty close. Compounding the issue is all the short wispy hairs I have from the regrowth of the hair I lost when I was on steroids last year.

Ah, I forgot to mention we went to tea time to mingle with the monks. Prior Aelred greeted me first with a big hug and said “can you hear me now?” I love his sense of humor and compassion. He has been following my updates on Facebook and has given me lots of encouragement along the way. It’s always good to see him.

I miss Mike. It’s been a good trip, but I’ll be glad to be home. Of course, I miss the kids too. It will be so great to see them again too.

God speaks, Kids, Multiple Sclerosis

Morning snippet

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Psalm 38:15 “But for you, O Lord, do I wait; it is you, O Lord my God, who will answer.”

Oh boy, do I wait.

I hate waiting, but yet I also hate to be rushed. I suppose I should give God the same courtesy I would want. I won’t try to rush Him. He will heal my eyes, in His own perfect time.

Until then, I must relish the good and take joy in what I have now. I am loving spending time with my kids this summer. We have taken walks together, played at the playground, gone camping, ate ice cream, built forts, danced around the living room. They return to school in a little over a week, and things will change all over again. I’m not sure I’m ready, but it’s okay because we take things one day at a time around here. And anything that can be done in a day can’t be that overwhelming, right?

 

 

God speaks

The Bible is so old

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As I ponder my condition and worry if or when I will ever regain my vision, I am continually reminded of the truth. God whispers in my ear and reassures me that this life on earth is so short compared to the eternity I will spend with Him. And those will be the days when I will see with fully functioning eyes and I will never again grow weary.

Just this morning, and again this afternoon, God has shown me simple scriptures to remind me of this. There are so many. And they are all so old. Think of how many people have read these words over the decades, centuries even, and have struggled with illness and pain, loss of hearing and vision, and were continually comforted by these words. I am not the first to struggle, and I certainly won’t be the last. But, I can rest assured in the knowledge that God has been down this road before, countless times, and He’s got my back.

Dreams, Family, Vacation

Camping

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Had a lovely time camping with the kids this week. I took a nap as soon as we got home. Sleep was interrupted by a nightmare that seemed like it came out of an episode of Criminal Minds (which I haven’t watched in well over a year). Oh well. I woke up to dinner with the family. I have laundry going and now I’m just trying to catch up on paperwork and junk while Grandpa feeds my kids ice cream. Between the ice cream and camping gunk, they will be bathing tonight!

**INTERMISSION**

And now the kids are bathed and in bed. Time for me to rest. Not doing laundry. Not working on a grocery list or planning my weekly chores. I still desperately need to bathe as well, but first I’m parked on the couch with a heating pad, warming my aching, arthritic lower back. Cuz I don’t have enough issues with the hearing and vision loss.

Ah, but life is good. I am blessed with a wonderful family. And it is so good to be home.

Kids

Screen Time Struggle

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Do you struggle with kids and excessive screen time? I do, and it drives me crazy. I fear Minecraft may have taken over my son’s brain. I grew up playing a lot of Atari and Nintendo, and yet I feel like I turned out okay. Today though, I fear that kids spend even more time in front of computers and televisions, and we don’t know how that will affect their development. I try so hard to limit my son’s screen time, but some days it is such a battle. It’s exhausting, fighting that battle (it doesn’t help that we are so much alike). However, I do think it is a battle worth fighting. And this article helps to confirm that theory. Next time Luke objects to turning off the game, I’ll just tell him to read the article! 😉

Do Screen Time Limits Really Matter?