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.
Food

Okay, now let’s talk about food.

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I have found that one of the great things about being “stuck” at home all day, is that sometimes you are forced to be creative with your lunch options. That is, unless you are okay living on Ramen noodles lunches every day. Which I am not.

Who loves leftovers? This girl, right here. Sometimes it is okay to just reheat them – I’ll reheat soup in the microwave, but the broiler is the way to go for leftover pizza – but other times it’s better to do some creative repurposing. We grilled steak the other night, and ate it with a bleu cheese & bacon salad. So I decided to fry up that leftover steak (just to heat and add some butter flavor), slice it up into cubes, and throw it in with the salad. Grilled steak and bleu cheese salad – it’s definitely hitting the spot!

We also had a wad of leftover spaghetti. Now, I like to keep the noodles and sauce separate when I pack up the leftovers. It gives me more options for using it up. Rather than go with the standard spaghetti dish, I melted some butter and cream cheese (we always seem to eat all the bagels before we use up the cream cheese), mixed in some parmesan cheese, and then tossed that mixture in with the spaghetti noodles, threw it in a baking dish and layered it with the spaghetti sauce and some mozzarella cheese. Baked for about 40 minutes, and voila! We had baked spaghetti. The kids didn’t like it (not a fan of change, I guess), but I thought it was delicious. And the best part is that there are still leftovers from THAT, so I will be eating that for lunch tomorrow.

So that’s that. I’m thinking about baking some of my famous chocolate chip cookies next week, and if I’m successful, you may be hearing about that as well. I may even post a picture!

Coffee, Deafness

Being deaf is hard.

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Just a bit of raw honesty here… Today I am feeling overwhelmed with the frustration of being unable to hear. Today I want my hearing back. Desperately. I want to just have a day, or even half of a day, where I am able to play on the Easy Level. Where it’s not so hard to sit and be with my kids, and have conversations with them. This is HARD, you know?

Having said that, I feel a little better. The teary meltdown in the bathroom helped too. I think I will take my CI off for a bit and make another pot of coffee.

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!!

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 😉