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

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!!

Coffee, Housekeeping, Kids, Piper

The Calm

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I forget, is it the calm before the storm, or after? Or is it both? I think I’m in the middle. It’s Friday, and I do have shtuff to do, but I’m utterly spent. Natalie is in her pajamas, watching SpongeBob, Luke is at a friend’s house for the day, Piper is napping on the rug, and I am showered and shipping coffee. And blogging of course. Floors need sweeping, but they will just have to wait. Momma is resting her weary bones. Happy Friday to you all 🙂

Friends, Kids, Writing

Spring break festivities

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I had a wonderful day today. Yesterday was okay, with the exception of a large dental expense. It almost physically pains me to pay for dental work, but it’s gotta be done. A necessary evil, I suppose.

Speaking of necessary evils, today I helped a friend prepare her tax return. She’s a smart cookie and probably didn’t really need my help, but I was able to offer moral support and celebrate with her when we were done. She ended up getting a refund rather than owing a crap-ton of money, so it was definitely cause for celebration. We took the kids out for ice cream cones. It was cold and rainy, but in my book the weather is always perfect for ice cream.

Tomorrow the kids and I will be taking the Spec-Tran to the local bounce house. We’ll be there all afternoon, so we’ll need to be sure to bring snacks and other supplies. I’ll bring electronics just in case one of them gets bored, but I’m hoping that doesn’t happen. I’m really hoping they play away and forget about me so I can sit, uninterrupted, and work on writing my book. It will be a great day for all of us, I’m sure.

Kids

No Screentime Until…

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Spring break is here! I didn’t really have a plan at first, other than our various appointments and a trip to the local bounce house. But then a friend posted a link on Facebook (heck if I can find it now) with a list of things that your kids must accomplish each day before they are allowed Screen Time. I think it was intended for kids when they are home for the summer, and I think  spring break is a perfect way to try it out. If it goes well this week, we just may be implementing it for summer and Christmas breaks as well!

I made some minor adjustments to the list, and here it is:

NO SCREENTIME UNTIL:
1) You have read for 20 minutes
2) You have checked the common areas to be sure your things are put away (toys, clothes, wrappers)
3) You have checked your room to be sure it is clean (bed, clothes, toys)
4) You have played, built, crafted or have done something else creative for 40 minutes
5) You have finished one chore (and it’s done well enough that Mom/Dad will say that you did a great job)

I didn’t expect a lot of pushback from Natalie, because she isn’t obsessed with video games or tv. She can spend hours doing crafts, playing “house”, or even doing chores or cleaning her room. It’s Luke I thought I would get resistance from, because he is the one obsessed with video games. Whenever he requires punishing, we take away his screen time and he FREAKS the FUDGE out.

Yet once again I am surprised and happily amazed at my children. I had forgotten how much my son is like me. I see myself in him when he is frustrated with his homework and wants to give up, and the stories I hear from his teachers are probably eerily similar to the reports my teachers gave when I was his age. He and I have strong perfectionist tendencies, attention to detail, and are easily distracted. But I forgot about the List Factor. I love lists. I use them daily, and they really do help me function. In the past, I have found short to-do lists scattered around Luke’s room, and they always make me chuckle.  So, when I presented this list to the kids yesterday morning, Luke was all over it. He was so focused on accomplishing each task on the list; he was even setting the timer so there would be no question that each thing was done just right. Surely this excitement and eager cooperation would not last more than a day, so I made sure to cherish the moments.

But then today! Today he was ready to go all over again. “Mama, where did you put the list? What chore can I do today?” I’m not even kidding you. He really said these things. I’m in heaven. He did the dishes and wiped down the counters, and then he built a fort with his sister. It’s 11:30 and I haven’t heard one request to play video games (but since he’s reading over my shoulder and he’s a Mr. Smartypants, that will come soon). Yup, there it is. With a big cheesy grin… “Can I play video games downstairs?”

We are having so much fun. Big, cheesy grins all around.

Writing

Chapter ONE

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It all started with jury duty. It was a welcome reprieve from my stressful job as a collections & finance manager, but I wouldn’t say I was enjoying it. The acoustics in the County Court building seemed really terrible. I was hearing some sort of ringing, a high pitched whine. Only the ringing didn’t go away when I left the building. It continued, worsening even, throughout the week. On day three, when I cupped my hands over my ears and snapped at my kids for being noisy, my husband knew something was wrong. “You need to call the doctor”, he said.

He was right.

That was early August of 2013.  A lot has happened since then. A lot has changed. Whether the changes are good or bad is all a matter of perspective. This is my story, from my perspective; the good, the bad, and everything in between.

There’s your teaser, for the book that may or may not get written. What next? I barely remember the 6 months following that. I’m having memory problems. Clarity issues. WRITER’S BLOCK. Is there a cure? Is it permanent? Will she ever break free?!?!

I think this is the kind of endeavor that drives people to Crazy Town. I might be okay with that 😉

God speaks

When strivings cease

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Part of a song lyric popped into my head this morning, and it stuck real good so I wanted to share.

“When strivings cease.” It’s from one of my favorite worship songs, called “In Christ Alone”. I believe much of the lyrics from the song were derived from Psalm 46, so I looked it up (it’s also copied below, for your convenience). I found that this particular Psalm was written during a time of war and natural disasters. The writer of this Psalm was tired; tired of fighting and tired of being afraid. When he talks about striving, he means it. But then he turns to God. He recognizes that God is in ultimate control and believes He was telling him to stop trying so hard. “Stop striving, I’ll handle this.” He didn’t necessarily say he would end the battle anytime soon. He just said He would be there through all of it.

This reminds me of Exodus 14:14, where it says “The LORD will fight for you; you need only to be still.” This seems to be a recurring theme throughout the Bible, and consequently in my life as well as others who are struggling with any sort of “battle”. If that’s you – please know these words are true for you – Stop striving. Be still. The Lord is fighting your battle. Rest in Him.

Psalm 46:

1 God is our refuge and strength,
    an ever-present help in trouble.
2 Therefore we will not fear, though the earth give way
    and the mountains fall into the heart of the sea,
3 though its waters roar and foam
    and the mountains quake with their surging.[c]

4 There is a river whose streams make glad the city of God,
    the holy place where the Most High dwells.
5 God is within her, she will not fall;
    God will help her at break of day.
6 Nations are in uproar, kingdoms fall;
    he lifts his voice, the earth melts.

7 The Lord Almighty is with us;
    the God of Jacob is our fortress.

8 Come and see what the Lord has done,
    the desolations he has brought on the earth.
9 He makes wars cease
    to the ends of the earth.
He breaks the bow and shatters the spear;
    he burns the shields[d] with fire.
10 He says, “Be still, and know that I am God;
    I will be exalted among the nations,
    I will be exalted in the earth.”

Coffee, Disability, Domestic Engineer

I did not chuck it all

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In reference to my previous post, I did not throw in the towel. I did not chuck it all and join the circus. Heck, I didn’t even stay home and get drunk. Turns out some good, quality sleep is all it took to snap me back to reality. Today I gladly accepted my responsibilities. I went to sleep by 11 pm, was up at 7 am with the kids, and only took an hour long nap during the day (which is not usually sufficient, but this time it was!). I got a lot accomplished on the homefront: sweeping, mopping, cleaning toilets, folding laundry. I even fed myself a decent lunch of fried eggs and toast, though I’m pretty sure I got egg yolk all over myself in the process of eating it. I fry my eggs over easy, and I can’t see colors well due to my vision loss. So, runny yolks folded up in my toast got messy. And I only know this because I felt it dripping. All. Over.

Anyhoo, I have been mixing my regular coffee grounds with decaf. I don’t want to go completely caffeine-free, but I do want to be able to drink more coffee and not have the crummy side effects. Caffeine is a diuretic, and we people with MS  have bladder issues as it is (97% I think I remember reading). So caffeine doesn’t help. Gradually switching to decaf – which is not entirely free of caffeine – seems to be a good alternative. This way I can have my coffee and drink it too. So far it has been a painless process, and I’m already noticing improvements, like the better quality sleep. I’m glad for the change. We’ll have to wait and see if it sticks.

Pastor gave a really good sermon (as usual) last Sunday, and I want to  write about it this week. Tomorrow’s looking good for that. For now it’s time to wind down and hit the hay!

Food, Kids

Some days you just wanna chuck it

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Do you ever just feel like you’ve HAD IT with being a grown up? Like you just want to dismiss all your adult responsibilities and go play games and eat chocolate cake? I’m having one of those days. It’s the first like this that I remember having, but I’m sure I’ve had them before. I just want to go to the party. There is a party somewhere, isn’t there?

My daughter hosted a party of sorts for us this afternoon. She called it a “bubble sword” party. It was just the two of us, with our bubble swords (wands?), sitting on the porch. In the cold. Eating crushed Doritos. That’s pathetic, right? Not the sort of party I’m longing for, but I was a good sport about it and I love spending time with my daughter. She’s very thoughtful, creative, and caring. Today she let me take a nap in her bed. She declined to join me for my nap, and I found out after I woke up that she spent that time putting away the clean dishes. What a role reversal! So, no real partying, but today’s napping went well.

It is in this moment that I could really go for a beer or four, but truth is I just don’t want to deal with the consequences. I do enough staggering sober, and there’s no sleeping off a hangover when you have kids who think 7 am is “sleeping in”. So, instead I am munching on tortilla chips, drinking water, and writing. My ultimate therapy – the writing mostly, not the chips.

Okay, the chips too.

Happy spring, readers!

Multiple Sclerosis

MS Fatigue

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It’s an interesting phenomenon, this MS fatigue. Lots of factors affect it, including sleep, hydration, and exercise. Sleep I can manage to get, hydration is easy to maintain (and also easy to forget), but the exercise is not always steady.

I have poor balance due to MS. I often bump into things, using the nearest piece of furniture or wall to “catch” my balance. I used to say I “lost” my balance until a physical therapist gave me that new term. You only lost it if you actually fell. Otherwise you can say you caught it!

Balance is a complicated issue, and many functions within the body affect it. If you’re interested in the details, you can read more here: “Causes of balance and walking problems“. One thing that really affects me is the leg weakness. So when I’m not exercising on a regular basis, my legs get weaker, and my balance suffers greatly.

I’ve said before that I walk my kids to the bus stop in the mornings. The sub zero temperatures here in Michigan prevented us from walking for several weeks. I am keenly aware of the effect this has on my body. My leg muscles weaken very quickly. Lots of leg muscles are used for walking (roughly 200), and walking requires balance – that is, if you care to stay upright – and so it takes more effort for me even to walk around the house. Hence, the fatigue.

It frustrates me that this can spiral down so quickly, but the upside is that I can also turn it around just as quickly. Using my cane helps in the interim, as it helps me maintain balance and thus requires less energy. However, after just a few days of walking to the bus stop and walking the dog around the block, my legs are moving much better already. That, and I can almost say I have ENERGY. Almost. Still, it’s a pleasant change from the days of fatigue. I’ll enjoy it while it lasts.

Deafness, Disability

Spec-Tran = FAIL

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Hold on, here comes a rant…

I had an appointment with my neuro-ophthalmologist scheduled for today at 1:00. My Spec-Tran ride was scheduled to pick me up at 12:23. I was ready and waiting at the door by 12:15. By 12:29 I was getting antsy. It takes a good 20 minutes to get to where I need to be, and then I have to walk a ways, take the elevator, walk some more, which all takes me another good 5-10 minutes. So, you know, I was kind of freaking out. I called the Spec-Tran office to find out what was up. They said, “don’t worry, they are just running a few minutes late”. Since they were already 6 minutes late by the time I called, I figured they would show up at any second. They didn’t.

So I called again, and spent quite a bit of time on hold while the dispatcher figured out what was going on. After a good, long wait she was able to tell me that the driver indicated he waited in the driveway for 2 minutes, and then left. She admitted this was clearly an issue because they are supposed to wait longer when picking up riders. That’s nice, but the real problem is that I had been staring at my driveway since well before my scheduled pick up time, and there were absolutely NO VEHICLES near it. So clearly, the driver was at the wrong house (this has always been an issue; there is a house down the street with the same number, but it’s technically on a different street. Technically.) The dispatcher said she would find another driver to pick me up, and by the time she was able to find one (who could pick me up at 1:30), it was 1:01. I told her that’s nice, but could she call my doctor’s office and let them know what’s going on, to see if they can even see me that late? Because I knew they couldn’t. I just wanted her to be the one to apologize for their mistake. Also, you know, I’m DEAF, so this phone call business is quite challenging and I’m on the verge of a meltdown.

It was not a good day for wearing mascara.

Frustrated and angry, I composed an email to my husband to let him know what was going on. I knew he would be texting soon to ask how the appointment went. I cleaned up my face so I wouldn’t scare the dog, and then got on the phone to call and reschedule my appointment. While I was on hold, my husband walked in the door with news that he had already rescheduled for me. He felt so bad about what happened, and was apologizing even though it was entirely out of his control.

I know he grows weary at times of driving all of us around, so I had hoped that this transportation service would relieve some stress for him. Today’s mishap definitely shot a few holes in that theory, but I’ll keep using it and hopefully over time we’ll get all the kinks worked out. Just like any adjustment, it takes time and patience.  Thankfully, those are two things I have plenty of.