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 😉

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.

Deaf and half-blind runner with multiple sclerosis