Tag Archives: Deafness

Why the crockpot is my new best friend

This is not to diminish the value of my friendships with real people, because I have a lot of pretty amazing friends, but by golly, I am really loving my crockpot this year (I’ve had it a whopping 16). The internet holds a wealth of information and ideas for what you can make in these things, and I’m finding plenty of healthy, tasty meals.

But here’s why I’m really learning to love the crockpot – it allows me to work around my fatigue and still manage to feed my family. The fatigue that MS causes has really been kicking my butt hard this past month, and by 1 pm (even after a morning nap) I’m pretty slogged (not sure if that’s a word but it sounded good). By 4 or 5 pm, after getting the kids from the bus stop and handling the flurry of that excitement, I’m close to non-functioning. Which makes dinner prep rather difficult.

Case in point: It is almost 7 pm. We ate dinner already (tacos!!) but I’m feeling the munchies so I went into the kitchen to get a bowl of cereal (granola, actually). I pulled the granola from the cupboard, the milk from the fridge, and set both on the counter. I then got a bowl and poured the granola into it, and proceeded to put both the granola back in the cupboard and the milk back in the fridge.  Notice anything missing?? I walked all the way back to my bowl of granola, ready to eat, and discovered I had forgotten to pour the milk.

It’s really frustrating, feeling so… I don’t know, lacking in ability to perform simple tasks, I guess, and pretty damn powerless to change it. But I’ve been faced with lots of things, big things, that I cannot change. If I have learned anything from these big, unchangeable things, it’s that I do still have a choice. And that choice is to accept it, adapt, and move on.

The crockpot means I can prepare a delicious, healthy meal for my family early in the day, before I get fatigued. I refuse to give up and feed them frozen pizza every night. So, for what it represents and for what it allows me to do, the crockpot is my friend. The thing is old enough to drive now (a wedding gift), but I suppose using it for a ride to the store would be asking too much. We’ll just stick to food preparation for now 😉

Memory Fail(s)

Funny story (to me, anyway): This morning started out just like the previous few; ease out of bed, pack lunches for the kids, wish them well as they leave with Dad to go to zoo camp… Then I watered the flowers, made some coffee, and sat down on the couch to relax and do some reading. Forty-five minutes later I hear a honk, and the dog started barking. Perplexed, I got up to see what was going on. There was a white Spec-Tran van in my driveway. To pick me up. For the hair appointment I made just two days ago.

Oh, I was frantic. They don’t have to honk, and they certainly don’t have to wait for you to get dressed because you completely forgot they were coming. So I opened the front door, waved to let the driver know I was aware and coming, and rushed back to the bedroom to put on a bra (because I was still in my pajamas). The whole time – a matter of seconds that felt like eternity – I was praying the driver would not leave me. I hurried to put Piper in her crate, slipped on some shoes, grabbed my wallet and purse with a last minute check for my keys, and headed out the door. The sense of relief as I rode in that van was extremely gratifying.

Then as we were nearing our destination, the driver asks me if the address is 4020 (they often do this, which frustrates the crap out of me because they have GPS and I’m deaf, and it’s just hard and usually extremely unnecessary) and I say yes, that I believe it was next to a Quality Dairy, but I wasn’t sure because I’ve only been there once before. But then he pulls in to the salon’s parking lot and it’s there, right where it always has been, and the nearest Quality Dairy is at least 3 blocks away. Another memory fail. But here’s my note to Spec-Tran: don’t take navigation advice from the unlicensed deaf/blind girl. Her memory is like a sieve.

Minor mishaps, really. I was there with plenty of time to spare. I got a real haircut, and afterwards was able to chat with the stylist about cochlear implants. She had seen a video on Facebook showing several people, of all ages, reacting as their implants were activated. She was fascinated by the miracle of it, even though she knows she can’t come close to knowing what it’s like. She showed me the video, smiling the whole time, and her eyes just sparkled as she watched; she seemed to really “get it”. So it was just a good moment, to share in the awe of the CI miracle with a hearing stranger. It really is a miracle.

And then I called Spec-Tran (yes! with my cell phone!) to get picked up (we were done much earlier than I expected). When I got home I changed out of my pajamas (lol), let Piper out of her crate, and poured that cup of coffee that had been waiting for me. It’s good to be alive.

Bilateral CI Success

Tuesday most of the day was taken up with a return trip to the audiologist. I was activated last Tuesday, June 9th, so this visit was just to see how I was doing with the left ear, and to make some more adjustments to the volumes on the electrodes. The volume for the left ear was overall too low, so I noticed a big difference after these adjustments.

The biggest change so far, the biggest improvement and blessing from the second implant, is that the tinnitus is greatly reduced. It is almost gone completely, when I’m wearing both processors. That has been a pleasant change, and one that didn’t come until this week’s adjustments. It’s so nice, so peaceful, to have ACTUAL silence. Which is ironic, right? Because before, I was profoundly deaf, not able to hear real world sounds, but there was still perceived noise going on in my head, and I had sort of become accustomed to it. Yet I guess in becoming accustomed to it, I hadn’t realized how much it bothered me. And now that it’s gone, I’m loving it. And I don’t even care that the left side is still slightly sore from surgery, or that these implants are bulky, or hard to style my hair around. Those things could be nuisances, but they aren’t. They just don’t bother me.

Because I am loving the silence. That is strange to say. From someone who unwillingly lost her hearing in a matter of days, nearly two years ago? Someone who has endured countless medical procedures and tests, including two surgeries to regain her hearing? But hearing the things going on around you in reality is far different than hearing the incessant ringing going on in your head. Because tinnitus really is all in your head. So yes, all of that was worth it to get relief from the ringing. Of course, if that were the only benefit I would say it’s overkill. They still haven’t found a cure for tinnitus. But hearing again, the real things and ONLY the real things, is wonderful. And it only gets better from here. I am looking forward to more double CI joy!

Lame Recap of a Wonderful Weekend

We’ve had a lot going on around here. This weekend was busy, and leaves me longing for Monday, when I can truly rest. Saturday was the Walk4Hearing, which was fantastic. Ir was raining a little, but it was tolerable. The temperature was nice for walking. I didn’t walk, of course, because I was still in surgery recovery mode. Instead, I borrowed a wheelchair and my friends were eager to push me along the way. Luke came with me, and it was a lot of fun to see how excited he was to be there to support his mom. He was amazed at how many kids were there, and how many had hearing aids or cochlear implants. Who knew hearing loss affected so many young people?

Then there is today, Sunday, the 8th anniversary of my son’s birth. Yes, it was his birthday. A day to celebrate, for sure. On these birthdays I think a lot of our seven year wrestle with infertility, and thank God for eventually healing me and for giving us two wonderful children. Luke was really excited to turn 8, and he talked about all the fun things he has experienced in his 8 years here on earth. It’s been a fun ride, that’s for sure. I am proud of the boy he has become, and look forward to the man he grows up to be.

I really do have more to say on that subject, as well as others that have been rolling around in my head, but it’s late, I’m tired, and I don’t do well with that combination. My mind works best in the morning, so that is when I will return. Whether it’s tomorrow morning or the next, I cannot say, but I do promise to be back.

Being deaf is hard.

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.

I am learning ASL.

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!

Going Bilateral

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!!

Holidailies 2014

I’m a day late for this blog project (as I was with the thankfulness challenge, but I figure a day late is better than never, and who’s counting anyway?). I heard about Holidailies from a fellow WordPress blogger, Wendi over at Sudden Silence. I thought it sounded like a fun way to be “held accountable” to writing. Holidailies is basically a portal for blog entries written on mostly daily basis from December 1 to January 1. The posts don’t have to be about the holidays, though chances are most of them will be. Given the obsessiveness our society has evolved into having with these winter-time holidays.

That sounded like a segue into a rant about Christmas commercialism. I assure you, it was not. I’m not much of a ranter when it comes to blogging.

Oh! I almost forgot. I’m supposed to introduce myself for those who are new here. There is some info on my About page, but I’ll elaborate. I am 36, and I have multiple sclerosis. I was diagnosed in 2009 while I was pregnant with my daughter. It causes problems, which I talk about here some, but you’ll see that in no way does MS have me. II lost my hearing in the matter of one short week in August 2013 due to autoimmune inner ear disease, but I have since been implanted with a cochlear implant in my right ear. MS struck hard in September 2013 and took some of my vision. So being deaf, visually impaired, and easily fatigued from the MS all adds up to an unemployable me. Which gives me plenty of time to write, something I have always loved to do.

I do welcome your comments here on my blog, whether it’s to ask me a question or just to say hi. Welcome, welcome, and I hope you are having a wonderful holiday season!!

~Mindy

The most thankful post yet

This morning I had a wonderful, realistic dream that our family was sitting around waiting for Thanksgiving dinner. Mike’s aunt and grandparents were there, and we were trying on hats, comparing head sizes. We were just talking and having a good time. Like the old days when I was a hearing person. In reality, that was only a short time ago. I lost my hearing quickly, but almost as quickly I was given the gift of a cochlear implant. I remember the fear of complete silence, and I still experience that in bits and pieces (bedtimes, showers, etc.). So while it will never quite be the same, dreams like I had today remind me that it’s possible. It is on the horizon.

Almost literally.

My husband’s family, my adopted family, will be here tomorrow for the food-filled holiday of Thanksgiving. My dream – or memory, perhaps – will become a reality. Laughing together, sharing stories, making new and wonderful memories. Redeeming last year’s Thanksgiving when I ran crying from the dinner table. Last year was the first year in over a decade that we had not hosted turkey day, and I am proud and nervous to be reclaiming that tradition after such a challenging year. We have always felt blessed around this time of year, but this year I think more than most. Last year I was such a mess, but over time God has picked me up and held me, and given me peace and patience and hope. When I had nothing to give, and barely the strength to ask for help, He rescued me. He rescued all of us.

“Amazing grace, how sweet the sound, that saved a wretch like me. I once was lost, but now am found;was blind but now I see.”

Bilaterally Bionic

I am a late-deafened adult, and when I lost my hearing it happened very quickly (within a week of the onset of tinnitus). I now have a CI in my right ear, activated last June, and it is *wonderful*. I am so excited to be having conversations again with my family and friends!

People keep asking if I’ll get one in the left ear as well, and up until a few days ago, I always replied with an emphatic YES. However, I started having serious doubts. When I take off the processor to sleep, shower, change my clothes, or do my hair, I am more aware of the things I AM still able to hear with my left ear. It’s not much, but it’s not complete silence. I can hear loud noises, such as a phone ringing or my daughter screaming at her brother or sometimes even a knock at the door. And though it’s not even close to normal hearing, and I wouldn’t be able to understand speech, it’s still something. And going bilateral would mean, well, silence. Completely. And I don’t know… do I want that? Is that a reasonable price to pay in order to have two good, working, bionic ears?

Knowing there are many people on the Advanced Bionics forum who have gone bilateral, and perhaps also wrestled with these same questions, I posted my concerns and asked for some perspective. I was astounded at the number of responses I received. All held great perspective and food for thought, however one in particular struck a nerve I hadn’t realized was exposed.

PaulW writes:

Mindy,
I wonder if the real issue isn’t fear.
I see that you are a mum. And I know mums are supposed to be perfect caregivers, protectors and comforters. How can you do that if you are deaf? But hubby can hear – right? And there are two children who can learn to look out for each other – even during the night. Teach them what smoke detectors sound like and what to do – i.e. wake you. Teach them not to open the door to strangers and to come and get you. Teach them that if either is sick to come and wake you. I do think that everyone can learn to look after each other and be a secure, strong and safe family. It’s not all on your shoulders! And if truth be told, what can you hear? You might be doing your family a much bigger favor by improving your own hearing and ability to share their happiness, experiences and socialize. That might be your biggest mum gift to them and yourself!

He is right, the issue is not fear. What is the issue? I think it is that I allow myself to have unrealistic expectations of myself. While it may have been realistic two years ago to be able to hear a smoke alarm or whether a kid is crying at night, it is no longer. I am deaf now. Expectations change. My husband knows this, and he certainly doesn’t expect me to hear those things at night, so I shouldn’t either.

But with a change in expectations, we can go one step further and prepare the family so everyone knows what to do in certain situations. The thing is, this is not just for our family. Every family should have fire escape plans. And every child should know who they can come to when they are sick or frightened in the middle of the night. These are things that every family should discuss.

So, back to the burning question of getting a second CI. I still have some hesitation, but if I’m honest with myself, I would say that my left ear is pretty damn useless. I think that I am starting to accept that fact, and am willing to sacrifice that residual hearing in order to gain better hearing by going bilateral. I’m told by many that two is so much better than one. One person said it’s exponentially better, like 1 + 1 = 3. And if I can have better hearing during my waking hours and while I’m with people, being in complete silence all the other times is worth the cost.