Back to myself

My right Esteen sound processor was implanted again last Thursday. It has been far more painful than any of my other surgeries but I am so thankful to be able to hear again! Recovery has been challenging this time and I actually took the pain meds, so this post is long overdue. :)

Surgery day was pretty calm. I was a nervous wreck. I had flown in from OKC at 11:30 the night before and was pretty tired, too. My sweet friends kept my phone lit up with messages all morning, which helps a ton!! I even heard from Julie and Amy at Envoy. How sweet is that??

The anesthesiologist was a gentleman I had never met before. I thought he seemed pretty serious until I noticed a hammer sticking out of his pocket and asked about it. Turns out it was just a pen but after that, we all lightened up a little bit. :) 

This surgery was at Dr. Shohet's new surgery center. Of course, everything was too notch, as I've come to expect from anything relating to his practice.  It was very nice being the only patient having surgery that day. I begged Dr. Shohet to use sedation instead of general anesthesia but he would not agree. My mom finds it hilarious that he told me, "You are very influential, you know?" They all know me after 5 surgeries. :) I HATE anesthesia. In fact, I hate it even more after this surgery. 

Apparently, Dr. Shohet came in to talk to me but I don't remember that at all. When I woke up and was alert, I asked the nurse if things went well and she kept telling me she thought so. This nurse was wonderful but that was horrifying. I needed to know for sure! I asked her to get Dr. Shohet but he was gone. I even asked them to call him haha. It was very scary. Eventually, the anesthesiologist came in and gave me more details. I started crying as soon as he told me everything was working well. He actually got tissues and wiped my eyes for me. That was so sweet. 

My mom tells me I woke up MEAN and was yelling at everybody. I don't remember that at all, but am very embarrassed. That's another reason for me to hate anesthesia. I do remember everyone being very sweet. Even the ladies from the regular office (not surgery center) came in to check on me. That was so nice! They brought me coffee, too, and so did mom. Michiko blinged out my ear bubble, too. Isn't it adorable??

Dr. Shohet turned on and programmed the Esteem in surgery so I could hear when I woke up. The ear bubble precluded me from hearing much, but I could hear my own voice and a lot of screechy feedback. I DO remember freaking out at that point. Everyone went into motion, getting my remote and making arrangements for me to see Sam (my audiologist) that afternoon. Robert, the Envoy tech who was in surgery, didn't know how to fix it, so they thought I should see Sam.  It still amazes me how caring the entire practice is. 

Mom and I were planning on driving home immediately, but we had to kill time to make the audiology appointment. Fortunately, I felt GREAT!!!! It was like the huge burden I'd been carrying for 4 1/2 months was gone. I felt like myself again. Two of my friends actually commented that they could tell I was back to normal just from pictures that day. Mom and I went to the beach and got food. It was a nice afternoon. Mom was surprised that I was hearing better even with the bubble. 

Of course, seeing Sam is always fun. Seriously, I really like her. I love that I feel more like a friend than a patient AND she's great at her job. I LOVED it when she pointed out that I was communicating better already. She did a tymp and it was almost normal. Apparently the bubble was causing the feedback. I saw Dr. Shohet briefly. It was nice to hear him say that everything went well. 

Recovery has been difficult this time. I didn't sleep well that first night and the pain got pretty bad. Friday and Saturday were AWFUL  I couldn't move at all without excruciating pain. The pain meds didn't control it at all. I texted Dr. Shohet's nurse and got the OK to add ibuprofen. That made it bearable. I actually fell asleep sitting straight up because I couldn't move. Mom said I was moaning and grimacing all night. I had never had pain like that with the other surgeries. I actually rested for an entire week this time. I am the worst patient ever and have never rested for as long as the drs recommend. This time, I had to. It was pretty painful and consisted of a whole lot of this...

It's been a week now and I'm still not back to normal (physically). I'm sleepy and still have pain. The great thing is that it doesn't matter. :) I can hear again!! I'm not trapped in that horrible isolated state. I had to go to target today and was able to understand the cashiers. I can hear the dog's collar jingling when he comes down the stairs. I hear the doorbell and my phone and so many other sounds I've missed. Most importantly, I can communicate again. I feel like me! I'm so thankful for this miracle!

Summer Fun and a Surgery Date!

Summer is in full spring around here!! My precious "niece" and "nephew" are here for 2 1/2 weeks and we are making the most of very minute! It's very, VERY frustrating that I can't hear them as well as we became accustomed to. For instance, I can't understand them in the car when I'm driving and they are adjusting to getting my attention and looking at me when they talk. We are still having a blast though! This is my third post-Esteem summer and the joy of being in the water and hearing is still new to me. I love being able to play. We are spending lots of time in the pool.  At Disneyland, the kids and I got to play at the splash pad. We rode Splash Mountain...and no one had to cover my ears!

My mom, dad and I took the kiddos to Disneyland for a few days and had a great time!!  I was worried about the noise bothering me but it wasn't too bad. The worst part was when Brynna and I rode Tower of Terror by ourselves. It's tough to depend on a 5-year-old to tell you what's going on...especially when she's quite imaginative. :) Overall, it was a fantastic trip!

While we were in Southern California, I went to see the amazing Dr. Shohet. It's seriously so nice to walk into the office and be greeted by name. I've never felt so welcomed in a doctor's office! Gavyn was quite disappointed that Dr. Shohet was not going to cut my head open that day because he wanted to watch. Brynna, on the other hand, was relieved to meet him and find out that he is nice even though "chopping people's heads open is NOT nice!" I was thrilled that they got to meet him. They don't understand what an impact he has made on their lives...

So the big news is that I am having surgery to replace the sound processor July 24 or 25! Shockingly, I'm terrified. The surgery will be a bit more complicated than I had anticipated and I will be under general anesthesia. I HATE general anesthesia. I'm catatonic for 10 days after every surgery, the breathing tube hurts my throat and I tend to get sick and/or pass out. Plus, this will be a different anesthesiologist than I've had for all the other surgeries. I loved him! The worst part, though, is waking up. See, I'm really nervous this time. I know it's very possible that there will be complications and I won't be able to hear. Waking up and not knowing how things went is terrifying. I'm dreading that so much. Last time, even though the result of the surgery was devastating, I felt much better just knowing what was going on the whole time. Of course, my surgeon is wonderful and he will tell me everything I want to know when I wake up, but I won't be coherent enough to understand. Knowing that had made me VERY scared instead of excited. The day after the appointment, I cried most of the day. If all goes well, I'll be able to hear immediately, but I won't know it because of the wonderful ear bubble. Fun times!

Obviously, being able to hear again is worth whatever it takes...but I am really bummed right now. :-( The past few months have been so challenging that it's tough to be optimistic. 

Progress

On Monday, I drove down to Newport Beach to have my left Esteem adjusted. Back in May, Envoy's West Coast audiologist recommended that I try having it reprogrammed with some new software they'd developed. I wasn't keen on the idea at first because I really didn't want to mess up the one working ear I still have, but I decided to try it since Gavyn and Brynna are coming to visit and I can't stand the thought of missing out on precious interaction with them!  I'm going to see Dr. Shohet next week, so I figured that the settings could always be changed back then if I don't like them. 

I know I rave about Shohet Ear Associates all the time, but I love that practice more every time I visit!  I've been seeing Sam, one of their newer audiologists and she is FANTASTIC!!! She  knows what she's doing with the Esteem and is not afraid to deviate from the norm to get better results. More importantly, she's VERY relational. For me, that's the most important. I actually enjoy going in for appointments with her. She's been so sweet and supportive via email even though I've been a train wreck the entire time she's known me. On Monday, she was the only doctor in the office, so she, MaryKay and I visited a lot. It's a rare blessing to have that kind of a relationship with medical professionals. I am so very thankful!

I LOVE the new settings! Sam knew I was very apprehensive so she only completely redid one setting (each Esteem has 3 settings: A, B, C, and multiple volume levels within the settings). When I had two good ears, I never changed settings but with one, I have to change things frequently. Background noise and road noise are killer. Previously, we had thought that my left Esteem was maxed out. My pre-implant hearing was at the low end of the range of hearing loss that the Esteem treats so I can't get as much volume as I would like in that ear. It's still much better than a hearing aid in volume and quality, though. However, Sam was somehow able to add 10 dB more volume in all 3 programs!!! It's making a HUGE difference! In fact, after the appointment, I went to the beach and could understand conversation over the roar of the waves. Then I went to play pool and could understand the music in the background. That's a big change!!! I don't feel quite so isolated or like I'm in a bubble. It's definite progress!!!:)

Next week, I'll see Dr. Shohet to find out about when we can get my right Esteem working again. I can't wait to feel normal again!! Until then, though, there is a lot of fun to be had with Gavyn and Brynna and VBS coming up!:)

I love having an excuse to visit the beach often :)

16 weeks post surgery 

My Version of a "Deaf" Community

I have VERY strong opinions about the Deaf community and culture. I'll refrain from sharing those now, but please contact me if you'd like to know why I am so opposed to the idea. I'd be glad to share. :)

On the other hand, I LOVE meeting others who also live the miracle of the Esteem every day. Last summer, I got to meet my friend Ashton. I was in Dallas, taking Gavyn and Brynna to the Great Wolf Lodge and she came to have breakfast with us. That was the first time I had ever met another implantee! There is a Facebook group for patients and I know a few others outside that group but it was great to actually meet someone else who has experienced this journey. Ashton had her second implant a few weeks ago and I was able to visit with her. Here are a few pictures of us standing in the ocean talking. That's a big deal! With hearing aids, the beach is a disaster. Sand gets in the microphone and tubing and water destroys them. How amazing that we are able to spend all afternoon on a beach talking. We each had one working ear and one completely deaf ear, but we were still able to communicate. We have so much to be thankful for!

Ironically, we are standing with our deaf ears facing each other. Not our smartest move, for sure!:)

The past 15 and a half weeks have been horrendous. The only people who can understand what I'm going through are other Esteem patients. Being able to talk with them is so encouraging. They validate what I'm feeling and actually get it in a way no one else can. I'm thankful for a community of people determined to overcome this disability and live life to the fullest!

Birthdays

I have a long post about isolation in the works, but a conversation with Brynna keeps running through my mind and I want to record it. :) Brynna is 5 and LOVES to plan things. When she turned 3, she gave each person in her life an order for what to bring to her party. Some brought a dress for her, someone else brought a cake, a spoon, candles, balloon, etc. She likes to plan events, particularly when her birthday is involved. :) Her birthday is December 17.  That's important information. :)

Last week, I was talking to her on the phone. The conversation went like this:

Brynna: "Hey for my birthday, maybe you could come visit me for four days. I haven't seen you in a very long time!"

Me: "I think we can arrange that!"

Brynna: "But....my birthday is in the winter. So you have to come in the summer, k? We need to go to Andy Alligator to go on the water slides and play the games!"

We went on to make plans for my birthday (her visiting me and sticking mybrother's  head in the toilet) and my dad's birthday (watching "the pow movie" aka Home Alone with "Pow" aka Kevin McAlister). She's a really funny kid! But what sticks out is that she wants ME to visit her in the summer so we can go to a water park. I HATED water parks as a kid. I remember going to one and sitting at picnic tables the whole time. I had to take my hearing aids out so I was miserable. Obviously, not enjoying water parks is not a huge deal in the grand scheme of life. Being able to create these memories with the kids IS a huge deal, though. The Esteem lets me do that. :) I am so thankful!

Brynna and me at Andy Alligator in July 2012. Sweet memories :)

And one of Gavyn because he's just adorable :)

Elaborating a Little

This past weekend, I got to do one of my very favorite things: present as an ambassador for Envoy. When the Estrem is being featured in a seminar near me, the wonderful folks at Envoy call and give me the opportunity to share my story. I LOVE IT!!!  Public speaking has become joyful since I can hear. This time, it was even more fun because the seminar was with my incredible surgeon, Dr. Shohet, AND Julie Higginson, the CEO of Envoy, was there. It was wonderful to meet her! I actually got to meet a lot of wonderful people who were so encouraging. It was so nice to be around people who understand what I'm going through and to actually feel like a part of something. When I can't hear, I feel like an outsider all the time. More on that later, though. :)  I tell my hearing story frequently to anyone who will listen, but it never gets old. Being able to talk to people who are struggling with hearing loss and help them realize that there is hope for a normal life brings me great joy! 

I have to brag on Envoy and Dr. Shohet for a minute. When I was asked to attend the seminar originally, I said yes, of course, but then it was cancelled. The day before the seminar, Amy from Envoy (who I am dying to meet!) called to tell me that they had more interest and decided to hold a smaller version, but she wanted to tell me so I wouldn't feel like I wasn't welcomed. How sweet is that?!?! Of course, I decided to go to the seminar since it's just a few hours away. We'll, I also warned Dr. Shohet to look at my incision and had been trying to schedule an appointment. Very graciously, he agreed to check it after the seminar, in a Saturday. What a blessing he is! When I arrived, Julie greeted me with a HUGE hug. I was floored. Not many CEOs are so personal. Dr. Shohet also showed me such kindness and warmth. I am so thankful for them both!

In his presentation on Sarurday, Dr. Shohet explained the effects of hearing loss. It was like he was inside my head! I'd like to elaborate a little bit on what he said and ass a few of my own areas of frustration. Some of my acquaintances can't understand why it is so difficult for me to lose an ear. Hopefully this will help!

Feeling dumb - One of the most frustrating aspects of hearing loss is feeling dumb or like others perceive me as being dumb. I can't follow conversations, so I cannot engage appropriately. I respond to hear I hear instead of what is actually said. For example, I was in a meeting a few weeks ago and our principal asked me, "What is the student's birthday?" I responded with, "She has a positive attitude and works really hard!" I thought she had asked, "What is the student's forte?" When that happens, which it does frequently, it's embarrassing. I know I don't come across as intelligent or capable, which really bothers me. 

Being rude - The desire to appear engaged and intelligent leads to the next problem. I know that I can't follow conversation and respond appropriately, so I spent most of my time trying to predict what other people are going to say and coming up with responses in my mind. Then I give those responses...usually before the other person is done talking. When I realize it later it's embarrassing AGAIN and I hate that I seem so rude. I do this OFTEN, but I don't realize it until much later. I spend a 

lot of time apologizing for being so rude. 

I also hate coming across as aloof or snobby. If you know me, you know that I am NOT either of those things.  I love to chat with people! However, if I don't know someone is talking to me, I can't respond. Last week, I was at a BBQ with some friends. Later, I received an email from someone apologizing for teasing me. I had no idea he had been talking to me, but he thought that I was not responding because I was upset with him. Yeah, it's no fun!

Frustration -All of the other things I'm describing are areas of frustration.  I HATE not following what's going on, but sometimes it's just functional situations. For example, I have to give reading assessments at work. That's TOUGH when I can't understand many speech sounds. My kids have to repeat themselves over and over. We're all frustrated. I can't order in restaurants because I can't understand the waiters!

Paranoia- I thought this was just me until Dr. Shohet talked about it on Saturday. When I can't hear, I think no one likes me. I spent most of my life feeling that way, even wondering if I was autistic because I never fit in. See, I had to watch everyone around me interact but I was ALWAYS an outside (and am again now!). That led to me thinking that everyone must be talking about me or trying to exclude me. Fortunately, I know now that no one was TRYING to exclude me and it was all in my imagination, but I still find myself slipping into that mindset now. 

Feeling lost - On Monday, I went to dinner with some coworkers, Melissa, Karla and Carlos. When we got to the restaurant, Melissa said that Carlos was coming but Carlos wasn't responding to her texts.  Except she actually  said Karla was coming and Carlos wasn't responding. I spent a long time trying to figure out what was going on all because I couldn't distinguish the word endings. This is jus one instance. I feel like the world is spinning around me and I can't figure anything out. It's no fun. 

Exhaustion - When I can't hear, I spend ALL of my energetic tying to. I'm exhausted. Simple tasks like phone calls wear me out. After a day in the classroom, I'm super grouchy and worn out. But I can't unwind enough to sleep. It's pretty darn miserable!

The absolute worst part of hearing loss is isolation, but that deserves its own post. I am so thankful that my hearing loss is temporary this time!

A few happy pictures...

The amazing Dr. Shohet and Marcia Weiss, another Esteem recipient

Megan, my first Esteem audiologist and very precious friend!!

Life, Interrupted

Yesterday, I read a quote from C.S. Lewis. Well, it was the quote from my "C.S. Lewis Quote of the Day" app, but it was particularly fantastic nonetheless. 

My life is being very uncomfortably interrupted right now and I hate it. Oddly enough, it feels like my life didn't really begin until two years ago, when I could hear and finally became ME. For the first time, the insane anxiety and loneliness and fear weren't the dominating factors in my life. It was incredible. Now...that life that I had come to love is on hold. It's miserable. I hate feeling so blah all the time. It's like I'm in a bubble. Life is going on all around me but I'm not a part of anything. Even when I'm doing things I enjoy, I'm not fully present. I can't figure out how to be me while I can't hear. I despise it. Every day passed is another one crossed off the list. That's really how I view life right now. The last week has been particularly awful because a sinus infection and congestion have left me with even worse hearing and/or feedback (whistling) from my one working ear. Fun times. 

But that's not appropriate. As much as I despise it, God has allowed this difficulty. I know He will work it for good because He promises to, but it sure doesn't feel good right now. Reading this quote was kind of a kick in the pants. No, things are not good now. I'm very limited in what I can do and I can't enjoy things like I normally do, but that's not an excuse. I still have to put on a happy face and try to make the best of this time. It's tough but that's where grace comes in.  I really need that grace right now. 

On the bright side, my incision is healing REALLY well. Tomorrow marks 11 weeks since surgery. I think it looks great! I'm almost to the halfway mark.