This is exciting news. I didn’t know what to expect with the second cochlear implant, but I was told it’s different for everyone, and that quite a lot is possible. I had zero hope of ever hearing pitches normally again.
But guess what happened tonight? I was talking with my husband, telling him good night, and when I got to the bathroom to brush my teeth I looked at my reflection in the mirror and it occurred to me that I had just been hearing my own voice. MY VOICE. Which I hadn’t heard in almost two years. And you know what? I think I’ve been hearing real voices all day! It’s as if some thing in my brain just clicked. I’m so excited to hear more tomorrow, when I will actually be paying attention. To my son’s voice. To my daughter’s voice. And I’ll be hearing what they hear. Right?
I’m just in shock, I can’t find the words. I’m listening to my old ipod, with my favorite songs from before when I was a hearing person. Tool, Cibo Matto, Rusted Root, Over the Rhine, while still quite tinny, the notes are all there. The notes I remember. In my ears. And I’m not sleeping. This isn’t just in my dreams. It’s as good as real.
No words here. Just tears of joy. Indescribable joy.
Category Archives: Deafness
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.
Walk4Hearing SE Michigan is almost here!
Hey everyone! Have you donated to my team yet? There’s only a week left! I dare you to drop 20 bucks on this event 😉 Go HERE.
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!!
Spec-Tran = FAIL
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.
It is time for bed.
I had one busy weekend, and while I would love to tell you all about it now, I must be responsible and get to bed before midnight. Oh, I can almost literally hear my bed calling my name.
Nah, it’s probably just the tinnitus…
Add blood disease to the list…
I’ve been really tired lately. For the past couple of months, actually. I just kind of assumed it was circumstancial, or due to the m.s., or a combination of both. It would make sense. Fatigue and balance issues are par for the course with m.s., and we have the new puppy, and we’ve had lots of travelling and family events with the holiday. So I had been telling myself that’s what it was, and it would ease up.
Only it wasn’t easing up, and I was starting to get very discouraged. I just couldn’t get back to that place of feeling like you have sufficient energy to move. And no amount of caffeine or sleeping seemed to help.
I went to see a new neurologist yesterday, and shared all of my concerns with her. She said I’m doing all the right things (though I am under orders to stop climbing on chairs) and I’m on the best m.s. treatment with my monthly Tysabri infusions. She ordered a gang of blood tests, since I hadn’t had one in quite some time.
She called this morning with some of my test results (while we were at the pediatrician with my son, who has been complaining of headaches and was up last night with headaches and vomiting. She was still waiting on further test results, but the one she was most concerned with was my vitamin b levels (or hemoglobin, or something). Whatever “they” are, they should be at 12. Mine are at 8, which means I am very anemic. Their words, not mine. The lucky thing is that my primary, who my neurologist was advising me to see regarding the anemia, is located on the second floor of the building my children’s pediatrician is in. So Mike called to see if they could see me right then and they were able to! So I left Mike with Luke and took the elevator to the 2nd floor. The primary doctor ordered more blood testing to get a better sense of what might be causing the anemia, prescribed some iron pills, and is setting me up to see a hematologist.
What FUN. After everything I went through last year with the trip to Mayo Clinic, hospital stays, plasmapheresis, etc., I was really hoping for some time off from doctors and testing. That’s clearly not happening.
I’m not exactly looking forward to more medical drama – not to mention the frustration and guilt I feel for needing my husband to take time off work to drive me everywhere – but I am somewhat relieved to learn that I wasn’t just making this up. I wasn’t just becoming a lazy person. There is a reason for this fatigue, and the headaches and dizzy spells. More importantly, there are solutions. Before today I didn’t know the first thing about anemia, but I know now that it is treatable, and depending on the cause, can sometimes even be reversed. That’s a hell of a lot more than I can say for multiple sclerosis. And compared to all of the mess I’ve been through with m.s. for the last 5 years, and the mess I go through daily with hearing loss, anemia looks like a walk in the park.
Now I just have to find the park!
Little M.S. Runner 