Trouble in paradise?

Trouble in paradise?

It happened. I had my first major issue with my processor last night. Hubby had a YouTube video on that had REALLY annoying techno music and it was really grating on my nerves so I started to ask him if he could turn the sound down. As soon as I began to speak, my voice sounded like I had become possessed by demons. Then came high pitched squealing and whistling. Everything sounded horribly loud and distorted. I quickly removed my processor and checked it to see if there was anything obviously wrong. Put it back on, and the same thing happened. Voices sounded like a voice scrambler was being used, deep, robotic, and garbled. Tried changing programs and it seemed to work but after a few minutes the garbled sound returned. I was devastated!

They say when it rains, it pours; well that was me last night. After coming to the realization that I no longer had any natural hearing left, to then lose my processor on the same day was a massive blow. I pretty much fell apart in a million pieces and a puddle of tears. Of course the worst scenarios played through my head; what if the implant has failed? What if my ability to hear has suddenly degraded and I never hear properly again?

I packed everything in to my dry box for the night and said a prayer that things would be better in the morning. Shot an email to my audi, begging for her to squeeze me in today. Woke up this morning and with great trepidation, hooked up my processor. The garbled sounds were gone, but everything was painfully loud! I had to turn down the volume quite a bit to keep from wincing with every sound. My audi responded first thing and said she could squeeze me in at 2:30. 

When the time came for my appointment and I got hooked up, everything appeared to be working normally! Part of me was relieved while the other part was frustrated. What on earth would cause that kind of “malfunction”. I really don’t want it to happen again but since we don’t know why it happened, we have no way of knowing if it will happen again. We tried another processor with the same map and while I didn’t get the distorted sounds, it too was painfully loud. So we remapped my processor and turned down the levels on a few of the electrodes to where it was comfortable and stored both the new and old maps in separate programs. This way if I find I’m not hearing so well with the new map, I can go back to the old. 

The last thing we did before I left her office was to check the hearing in my left ear.  I sat in the booth waiting for her to start the test and after a few minutes she got up and came in and said, nope – it’s gone. I really didn’t think she had even started the test. So, I was correct… There is no natural hearing remaining.

Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father. Matthew 10:29

However, today was not all bad. I heard birds chirping for the first time since going deaf! Not just that, I actually heard the fluttering of their wings as they flew around the shop entrance I was about to go in. I stood there for a good couple of minutes with a big goofy grin on my face, reveling in the sound. They were just plain sparrows, but are honestly one of my favorite birds – as a child, I rescued countless sparrows (much to my parents chagrin, I’m sure). How fitting that the first birds’ song I hear would be that of a sparrow. Once again, I am reminded of the blessing of my bionic ear and the beauty of this noisy world. 

3 weeks post-op

3 weeks post-op

Last week, my stitches were removed. I can’t say that was an incredibly pleasant experience, but having them out meant I could shower! That had to be the best part – showering and washing my hair. I think I shampooed my hair 4 times to make up for the 2 weeks of grossness. Since then, things have been pretty good, although I had part of my incision split open and start bleeding again. Once more, turned out to be nothing to worry about. Things are healing as they should. 

Stitches are out!
Clean hair! Woo hoo!!

Being deaf, I miss a lot. I’m not just talking about sounds here, either. Sure, I don’t hear things like music, alarms, horns, water running, laughter, the doorbell, and every other sound that most people take for granted. I miss other things too. Because I focus so much on lip reading, I often miss body language or inflections in speech. Just like reading a text message, the tone can be misinterpreted and the meaning skewed. Watching TV or movies can only be done with captions on. When all your focus is on the words at the bottom of the screen, you can miss the entire gist of a show. I watched almost a whole season of a TV show once on Netflix only to realize I hardly knew what the characters looked like.  

Often, I get left behind in a conversation. It is simply impossible to keep up with the many twists and turns in context and topics. I try to piece together the flow of conversation, but I’m always one step behind. Just when I’ve fit all the pieces together and am ready to interject my witty comment, I realize that the tide has turned and I have no idea what everyone is talking about. If I’m lucky, I held my tongue and didn’t make a fool out of myself for making a comment completely out of context, if not I endure the puzzled, sometime ridiculing looks from those around me. I have come to learn to either stay silent and hope no one addresses me, or try to take charge and risk looking self centered so I can steer the conversations. But sometimes it’s easier to simply withdraw from social situations altogether, loneliness being more bearable than humiliation. Thankfully, being hard of hearing all my life, I learned to lipread at an early age. I rely heavily on that skill now. Unfortunately, it’s not perfect. If someone mumbles, talks too fast, has facial hair or lip/tongue piercing, or speaks with an accent, it’s far more difficult. I have gotten pretty good at bluffing my way through conversations. To be honest, I’m lucky if I understand half of what is being said. I feel bad; because, in a way, I feel like I’m lying to those around me. But truthfully, it is so much work to keep up with conversation when you can’t hear what is being said, that it’s actually easier and less embarrassing to just pretend to know what’s going on. Yeah, it gets me in trouble sometimes and that’s when I fess up and tell people I’m deaf, or that I have no idea what they’re saying. 

When you are deaf living in a hearing world, very few people understand. Some are obviously uncomfortable and walk away instead of trying to engage. Others overcompensate, shouting so I can “hear” them better. Almost every person though, immediately apologizes. I have often wondered why this is. It’s not their fault I’m deaf. They didn’t do it to me. Perhaps they’re apologizing because they spoke too quickly or without looking at me making it impossible for me to understand them. Regardless, if I tell you I am deaf, you don’t need to apologize. Yeah, it does suck to live in a hearing world, without sound, but I am managing. Just ask, “whats the best way to communicate?” I can lipread fairly well, but sometimes writing down or texting what you want to say is easier. 

Day 7 post-op

Day 7 post-op

My HUGE Frankenstein incision

My bandage finally came off. It was barely hanging on so I had hubby call the surgeon’s office. Guess what!?!? They’re closed until next week!! No joke… And their message said “if this is an emergency, hang up and call 911”. Umm, well… I’m not bleeding profusely, but according to the literature you gave me, this bandage is supposed to stay on for another week. So… What do I do?? Tried calling the local ENT, but he wasn’t in today. At least they had someone to speak to. I really can’t believe that the whole frigging CI program/office is closed for a week and not even a week has passed since they did 2 CI surgeries! Not even a nurse to answer questions or give advice. Unbelievable! Now, don’t get me wrong, I’m very grateful they got me in for surgery when they did, but wouldn’t it have been prudent to leave someone in charge in case either of their 2 patients needed something? 
We went ahead and pulled the bandage off and I got a good look at my Frankenstein line. It’s way bigger than I expected. Probably about 3 inches long and I’m guessing around 25 stitches. That being said, it looked pretty good. My biggest concern is my hair, it’s long and thick and frankly, very dirty since it hasn’t been washed since before surgery. So in trying to get my hair away from the sutures, my hair caught and pulled on one and it started bleeding. So what went from, “hey, this is cool”, quickly escalated to, “crap, what do we do?!?” Not like it was bleeding profusely, but it was dripping down my neck and after 20 min, hadn’t stopped. 

Now, in between finding out that the office was closed and actually removing the bandage, I took my dilemma to a CI users group on Facebook to ask advice. I figured these guys have all been there so they’d be the ones to ask. The majority all said that there was no way that bandage should still be on there. So of course that prompted me to take it off. I know these guys aren’t Drs or medical professionals, but they have all been through this journey too. Had it not started bleeding again, I probably would have just left it, but then, that would have been easy. 

Asked hubby if he could take me into emerg to see if they could cleanse it and bandage it. Got there and decided quickly that sitting in a room full of people with colds and flu would not be a good idea and anyway, the wait would have been 4-5 hrs for a stupid bandaid! Tried a local clinic, but they don’t accept walk-ins. Finally headed to the pharmacy to buy a bandage and do it ourselves. Amazing, these guys actually cared and helped us pick out what we needed for the job! Headed home with our bag full of goodies. I also shot off an email to my audi in hopes that she might have a suggestion or at least confirm whether or not the thing needed to be bandaged. 

Hubby did his best to carefully cleanse the incision and apply the bandage, but my hair proved to be a major pain. Got the thing semi-covered and mostly sticking so it’ll have to do. Still bleeding a bit after an hour of driving around town, so I’m glad we got the bandages. After all that excitement, I crashed in my lovely recliner and slept for 3 hours! I’m not sure how some people go back to work a week after their surgery. I’m still wiped out. 

In the time that I slept, the audi responded and suggested making an appointment with the same ENT that we tried. Unfortunately, he’ll be in the city tomorrow and not our tiny, rural clinic so that means driving an hour there and then an hour back. Once again, all for a stupid bandaid! I’d rather do that though than end up with an infection so looks like that’s my schedule for tomorrow. Yay…

First week is in the books and 3 more to go until activation. 20 days… Woo hoo!!

Day 4 post-op

Day 4 post-op

I think I almost died… The first thing the hospital should do when they kick you out is give you a laxative. Then this could have all been avoided. After 4 days of eating lots of fiber (like they told me) and drinking tons of fluids, I still hadn’t had a “movement”. Got hubby to pick me up a suppository as I was starting to feel really bloated and uncomfortable last night and the fiber pills didn’t seem to be doing much. 

Gentle my a$$!!!

He brought home the #1 selling brand. “For gentle, predictable fast relief of occasional constipation.” Just what I wanted. Was all ready to get things moving so I shoved it up there and waited a few minutes. I figured I should head towards the bathroom (since it’s such a long trek and I wasn’t sure how quickly things would get started). Got there and then thought it might be a good idea to have my phone, you know, in case I got bored, ha! So I hobbled back to the bedroom to grab it. 

By the time I made it back to the throne room, a hot wave had begun to spread across my body. Good Lord, God Almighty, then the spasms started. I broke out in a cold sweat, and my head started spinning. I was losing it. Consciousness started slipping away and the only thing I could think of is don’t take a header off the toilet and break your implant! I was grasping to the hand rails for dear life. Wave after wave hit me as 5 days of fiber finally started to make its way through my system. 

I wasn’t sure how much longer I would be able to stay upright so I grabbed for my phone and texted my daughter to come to my rescue. Then since she’s not always quick to answer texts from me, I called her too and just kept saying, please come help me in the bathroom. She came and I somehow managed to relay that I needed her to gather blankets and pillows. My vision was fading, I wasn’t sure I could hold on much longer. She brought them back and laid out a spot on the floor for me where I promptly collapsed on to them, only to drag myself up moments later for the next spasm. I am not lying, I saw my life flash before my eyes. After an hour of floor-to-throne moments, I think I made it through the worst of it. Now I get to deal with the residual “ring of fire” yay. Stupid hospital! But hey, at least I can laugh about it now!

Aside from my near death experience, today has been a much better day! Last night I managed a stretch of 2 hours sleep instead of the usual 45min – 1hr. What a difference that makes. The pain is also far more tolerable today. This could be due to switching to Tylenol with Codene, but I’m seriously hoping it’s just the natural healing progression and I’ll be off the pain meds completely very soon. The transition between the two pain drugs was not a pleasant experience though, so I’m very glad that’s behind me. 

The hair that was shaved around my ear is growing back rapidly and I’m finding my head incredibly itchy now. Partly the new hair growth, partly the bandage, and partly the healing, I’m sure. I just have to keep myself distracted or I may find myself scratching my ear right off. Still having a bit of dizziness when I’m up walking around so I try to push myself a little bit more. I know sitting on my butt for a week won’t help me get back to my usual self. 

Now that things are moving the way they are supposed to and I am feeling a bit more energetic, I keep reminding myself that this is all very temporary. The recovery stage will soon be behind me and I’ll be hearing once again. This is what I eagerly await. 23 days & counting…

Day 3 post-op

Day 3 post-op

Well, they say things usually get worse before they get better, and that seems to be the case with me today. The pain meds I was taking were driving me insane with itchiness so at 4am, I decided I wouldn’t take it anymore. Not a smart move on my part. The itchiness subsided, but having no other good pain meds, I was left with extra strength Tylenol. I was prescribed 650 mg but my pills were 500 mg so this left me a bit shy on my dosage. Hubby was finally able to get a new prescription for Tylenol 3s but only got it around 3:30pm. This left me for most of the day with a sub dosage of extra strength Tylenol to keep the pain at bay. I don’t think I really appreciated the intricacies of pain management. Everyone said stay on top of it for the first few days, even if it doesn’t feel that bad. Now I get it. Once the pain grabs a foothold, it doesn’t like to let go. I’m borderline going out of my mind right now, either the pain or maybe the withdrawal from the other pills, but it’s not a pleasant experience. I’m very impatiently waiting for the two Tylenol 3s to take effect. Hoping I’m able to sleep tonight though. 

With the increased pain, I noticed a corresponding decrease in my attitude. Funny how that works. I found myself getting aggravated at the slightest things. The way my socks felt on my feet, the pressure of the chair on the back of my head. A squirminess that won’t let me sit still. Probably effects of coming off those other drugs. Still my hubby is amazing and answers my every whim. When I couldn’t bear to sit in the recliner any longer, he brought his behemoth rocker for me to lounge in. This is sort of a running joke here because it’s his favorite chair and I always tease him that it’s not so great. Well, that issue is now settled and buried in the back 40. His chair is way better! It may have found a permanent residence in our living room now. 

I managed a brief shower this morning. While I couldn’t wash my hair (oh, how I’d love to) I was able to wash the yucky hospital feeling away. That felt good. I just have another 11 days to go before I can wash my hair. Yikes, that’s really not going to be pretty. The drainage has stopped so at least I don’t have to deal with that. However, I can tell there’s fluid in my ear. When I tip my head slightly towards my implanted ear, it feels like the fluid is going to make its way through my sinuses and come out my eye. Gross, I know, but I never said I would sugar coat my journey for you. The other really great unpleasantry? Constipation and bloating. Been eating tons of fiber, but my system is shut down tighter than Alcatraz. Maybe that’s got something to do with my irritability. Hubby bought me some fiber pills so we’ll see if that gets the show on the road. 

I do try to keep in good spirits through all this. I know that this is all temporary. Like labour, there’s pain and discomfort at the beginning but once you hold that child in your arms, the pain just melts away and is quickly forgotten. I think my activation will be very much like welcoming a little bundle of joy (without the dirty diapers & sleepless nights)! 24 days to activation!

My “oh so pretty” bandage…