The Week is Here!

Well, The Week is here. I thought I’d sit down and write this morning because I may not get a chance to again for a few days. Sometimes I try to have a coherent theme for my writing, but today it’s going to be a little of this and a little of that.

Humor
Dave and I had the house to ourselves on Saturday so it was just us for dinner. The kids don’t like anything with barbecue sauce so the only time we have it is if they aren’t here. We decided to pick up dinner from a local BBQ place and were discussing what to order. After Dave called the order in, he turned around and told me, “Oh, I changed my order. I got the combo, with catfish and …bullshit.”

I said, “You got the Catfish and Bullshit Combo?” (cracking up)

He laughs, says “NO! (trying the word again) Bullshit!”

I shake my head and tell him, “It still looks like you’re saying bullshit. What??”

So he thinks for a minute, then bends his arms and starts dancing around, flapping his arms like a bird. OH!

Me: “Chicken! Pulled Chicken!”

Dave: “Yes! Catfish and Pulled Chicken!”

I’d been watching his lips intently and I realized even though I now knew what he was saying, it still looked like he was saying “bullshit”. (Sorry for all the swearing!) So I pulled him into the bathroom and told him, “Say both words, and watch yourself while you’re doing it.” It’s hilarious – they really do look amazingly similar! Even though chicken has two syllables, you don’t really see them if you say the word casually. (I suppose you could really, really enunciate to make it noticeable but most people don’t talk that way.)

Very funny and very strange!!

Sleep

I did it! I have been sleeping in my bed for the past week or so…three weeks of recovery seemed to be the magic number. (Thanks, Abbie!!) First I used Karen’s suggestion, and used the neck pillow Dave had bought me. I couldn’t use it the way it’s meant to be used, kind of hooked around your neck from the back (it’s shaped like a horseshoe) because it was too big and pushed up against the backs of my ears, which was painful. So I laid it flat on top of my regular pillow. Then I laid my head on top of it, so my ear and the incision was kind of suspended over the open part of the pillow in the middle. This worked well for the first two nights; the only downfall was a slight ache in my neck from holding my head in a specific position all night long.

Then I decided to look for a really soft, fluffy pillow. Mine is a pretty firm foam pillow and it was just too painful to lay my ear flat on it; the pressure of my head against the pillow was too much. Paige and I went to Costco and I found the perfect pillow! It’s super, super fluffy and you can bunch it up any way you want. Best of all, I can sleep on this pillow with no pain at all, on either side. So I am highly recommending this pillow to any recovering CI surgery patients who are having a hard time with a regular pillow. It’s called the Cuddly Comfort Pillow and the package I bought has two pillows in it.

I just did a search to see if I could find a link to the pillows and apparently they’re only sold at Costco. (I can’t find a link anywhere, but they’re made by Sleep Innovations, the Memory Foam people.) It looks like they recently had a recall (in July) for possible metal fragments that might be in the pillow due to a mechanical breakdown, but I’m assuming they pulled all the suspect pillows because mine doesn’t match the recall number. (Nobody was hurt from these pillows, thank goodness!)

In any case, I’m still recommending them because they are awesome! My son got the other pillow to take to college with him and he absolutely loves it – he is a big fan of soft pillows. My daughter will get mine when I’m done with it and can go back to my regular pillow. Normally I like a little more support than this gives, but for right now, nothing feels as good on my ears as this does. It’s so nice to sleep on my side again!

Petunia
I have to give a shout out to Miss Petunia, my stuffed animal that was so graciously sent to me by Roxy. Roxy and I were chatting one night at Hearing Journey and she told me that she found sleeping on a stuffed animal was the best way to keep pressure off either ear. The support is just right on the back of your head. It sounded funny but kind of logical, and she offered to mail me a stuffed animal! So sweet.

So Petunia arrived, and seriously, I could not have slept without her. Now that I’m in bed, she has a place of honor in the bedroom but has been retired from active duty. But for those first few weeks, every time I lay down I would lay on top of her. She was the perfect amount of support! I would lay with her head peeking over the top of my head, so I’m sure it looked pretty hilarious.

Wendi & Petunia
Wendi & Petunia

Healing

I don’t think I’ve read about anyone else having to do this, so I’m going to mention it in case it happens to other people who have surgical glue instead of stitches or staples for their incision. I assumed this glue would just…I don’t know, dissolve after a while or something. When I went for my post-op check, the doctor mentioned putting peroxide on the incisions every now and then. I think that was supposed to help get rid of the glue, or maybe to keep things healing well…I have no idea. There were still big sections of glue that I could feel and it was kind of freaking me out. When I washed my hair, my fingers would bump up against this big barrier and it just felt really strange. Once the 3 week mark arrived, I decided it wasn’t necessary to still have this glue on my head…after all, other people had their stitches removed long ago! So I asked Dave if he would do the honors.

It took about an hour to get the remaining glue off both ears. It was a little painful at times because my hair is growing back, and had started growing over the glue. Dave was really, really gentle though and it didn’t hurt nearly as much as I thought it would. Once it was all off, there was a lot less pulling/tugging/tightness and it really did feel a lot better.

Dave took some pictures at that point, so we could see how I was healing. The funny thing was, he gave me his camera so I could download the pictures into my computer. As I was cropping them later on, I was slightly horrified because my ear really still looked kind of bloody and raw. I thought, “Wow, I don’t think I’m healing as well as I should be.” It was bugging me, so finally I mentioned it to Dave.

“Honey…do you really think I’m healing well? I know the doctor said I was, but in these pictures my ear still looks gross and bloody.”

He said, “What?! You can barely even see the scar! What do you mean?”

So I showed him the pictures and he cracked up. It turns out he still had pictures in the camera from the day we took my bandage off and first took photos of the incision. Those were the pictures I thought were recent. Way to give me a heart attack!

Here are some actual recent photos, 3 weeks after surgery:

My right ear, 3 weeks later
My ear, 3 weeks later
Left ear, 3 weeks later
Healing ear, 3 weeks later

Tinnitus
My tinnitus has changed a lot in the past week or week and a half. It’s coming equally from the left and right side now. There are still periods of it being very, very quiet and other times I get this screaming, extremely loud sound that makes me want to clutch my head in agony. (Thankfully it never lasts for very long.) But the biggest change has been the actual sounds, or noises if you will.

My tinnitus used to just be vague sounds, like the ocean roaring, beeping or buzzing. Now it’s beginning to actually sound “real”. Somebody knocking on a door, and I mean, it sounds exactly like that. I hear the plucking of guitar strings, and it sounds like actual music (although not a whole song). The main thing I hear right now sounds like an organ, very bass sounding. I hear what sounds like something dropping into the water, or drips of water. And jungle noises. Seriously. It sounds like a National Geographic special, with animal noises! I’ve actually laughed out loud over my tinnitus recently, because it’s just so ridiculously lifelike and weird. Sometimes I wish I could record this, so people can experience what goes on in my head all day long.

Activation
I can’t believe I’m saying this, but I think I’m more nervous and scared about activation than excited. People will say, “Oh! Aren’t you excited?? In a few more days you can hear again!” And no, I just haven’t even really been thinking about it. It’s actually the furthest thing from my mind right now. I think I’ll be more focused on it after activation, once the kids are set as far as school goes. Then I can focus on what I need to do for my hearing.

I just have no idea what to expect, and it’s hard to let my mind go there for very long. Since I had such a vibrotactile response to my hearing test during the CI assessment, I’m worried that the CI’s will just vibrate my head to the point where I can’t tolerate it. Those hearing aids they had me wear were like torture devices. I couldn’t hear anything but my head vibrated so much I couldn’t even keep my eyes open. They made me completely dizzy and nauseous.

So I guess I’m just avoiding thinking about it, and I’ll let the experience be whatever it is. Once I know what I’m dealing with, then I can move forward and work on the areas that need work as far as hearing goes. There’s just too much unknown right now for me to know how I feel about it all.

Smiles
I’m going to finish this off with pet pictures. Who doesn’t like to see pictures of cats and dogs?! These are the furry members of our family:

Toby, our Cockapoo

Toby, our Cockapoo

Sabrina, our fluffy girl (also called Beanie)

Sabrina, our fluffy girl (also called Beanie)

Alice (Ally), Grace (Gracie) and Maxie, our feral girls (Maxie is the mom)

Alice (Ally), Grace (Gracie) and Maxie, our feral girls (Maxie is the mom)

Sugar, our partially-deaf boy cat

Sugar, our partially-deaf boy cat

Frank the Guinea Pig

Frank the Guinea Pig

Cruiser the Guinea Pig (and me)

Cruiser the Guinea Pig (and me)

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About wendiwendy

I'm a real-life bionic woman.

Posted on August 18, 2008, in Cochlear Implants & Hearing Loss, Observations and tagged , , . Bookmark the permalink. 9 Comments.

  1. I also deal with tinnitus too, but they’re not bad as you’re describing them. I learned over the year to ignore them. Wearing my hearing aids, help “masking” them. I’m really anxious for Wednesday to get here as it’s the same day I’m getting mine turned on!! 🙂

    You’ll have to report back on how you’re doing and I will do the same!! 🙂

    Hang in there!! 🙂

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  2. I get really LOUD tinnitus once in a while. It was just a long cymbalistic droan. It’s hard to describe. Sometimes I get a lower pitch, too.

    Another Fear of the Unknown: Activation. Everyone experiences this differently, even for each ear. I keep telling myself to keep my expectations low. My ear has been deaf for over 10 years. It’ll take work to get it tuned up just right.

    I’ll be thinking of you when you get activated..some positive vibes and thoughts.

    HUGS,
    Shari

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  3. Thanks for all the great tips on sleeping after CI surgery. I’ll definitely keep those in mind to pass along to candidates I know!

    I can only imagine the mix of emotions you are experiencing surrounding your upcoming activation date. You are in my thoughts and prayers for a successful experience!

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  4. Wendi, Wendi, Wendi!! Thank you sooooo much for all the laughs I got from this posting! Laughter definitely is the best medicine, and I sure needed this!

    I’ll have an order of the Catfish and Bullshit Combo, please! And add some mistaken bloody photos on the side along with jungle noises that you alone can hear. I think that about does it.

    Wednesday is almost here!!

    Jennifer 😀

    Like

  5. Thank you so much for the link to the Aetna policy for CI! It’s stuff like that I’m looking for.
    And you have a very nice blog! Will put you on my blogroll, for sure!
    Congrats with simultaneous biletareal CI, and the best of luck to you in the activation! Will follow your progress, so keep writing!!!

    hugs from Ulf

    Like

  6. Wendi, I really enjoyed your post! I’ve only had a couple of times where I had tinnitus with my latest surgery. I did have one morning (after activation) when I woke up about 6 am with humpback whales singing in my ear. That’s exactly what it sounded like. And really loud. It didn’t last more than 20 minutes or so and then happened one more time later in the day. I have no idea where this came from!

    I understand the nervousness with your upcoming activation. I’m very sure your CI’s will be nothing like those hearing aids!!! Go Girl!

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  7. Golly, Wendi, you have made it thru your bilaterals in short order. I’m HOH, not CI, so I’m impressed with the progress you’ve made so far. I’m sure you’re looking forward to the day of activation! Best of luck to you! 🙂

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  8. I know I’m soooooo late but I’m catching up here 🙂

    I told ya three weeks and you would be flip flopping back and forth 🙂 I can tell by your pictures you are resting comfortably because you are just radiant 🙂

    Tinnitus is a pain in the keister, I still get it in my hearing aid ear. I am hoping that when I go bilateral!!!

    Like

  9. I so need a cuddly comfort pillow by sleep innovations. When I pulled it up..your post came up because you mentioned it. It was my 4 year olds comfort pillow and we lost it and he is mortified. If you know where I can get one or will sell me one of yours I would be a happy girl and one happy red head.

    Like

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