This little boy is such a joy in my life. He brings laughs, cuddles, and stress. The past few weeks I have had my mind racing. I have been quiet on here and I believe it could be because my mind is on overdrive thinking … Continue reading My Boy
Christmas has come and gone. We have traveled across the state for six days and now returned home. During my time to the Twin Cities I made an appt for a hearing aid repair at Starkey Hearing Labs. I love my Starkey aids but living … Continue reading When a Hearing Aid Repair Feels Like A Celebrity Sighting
As I look at the calendar I start to get tense and look back at this past year and I marvel of all the changes that have been made. This upcoming weekend is the Tae Kwon Do tournament when I noticed the crowd was more hushed, I noticed I couldn’t hear a TV, or my kid’s voices. I am not sure at this moment my hearing dropped or it was slowly dropping and it kind of hit me on this weekend. Either way it has been a learning curve with hearing aids, and accepting this new normal.
I look at this past year and I thought I would make a list of 10 things I have noticed and learned. I was able to get a hold of my audiogram from 1996 when I was 19 years old. I was in college and attending the University of Wisconsin and studying Communicative Disorders. I had a conductive loss at a 30-35db loss. Which in all reality I could have been wearing hearing aids back then. I am now 37 and I have a mixed loss that ranges from a 60-90db loss. That is a big difference. Will it change from this point, I don’t know but if it does I know there will be frustrations but I feel I will be better equipped to handle it.
- Always carry hearing aid batteries with you. I learned the hard way this last week. I decided to leave my bag out in the car after lunch and I was subbing in science. Well both hearing aid batteries went dead. I had about 3 hours of the day left to go with no break to run to the car. Thank God we were watching a movie very little talking and listening had to take place. It made me realize I need to learn to speech read more then ever which will be my number 2.
- I hear with my eyes as much as my ears. I need a big boost in speech reading. I can do a word here or there but I need a lot more practice. I lack in this area greatly. Although I have done a few experiments on my own while listening to someone I really do concentrate on their face. I will close my eyes at times and my comprehension really goes down. I need that visual; I need to see it as much as hear it.
- Hearing aids are not miracle aids. Yes I really rely highly on my hearing aids. I recently told a friend who is Deaf, I can’t sign proficiently, I can’t read lips for a full conversation. I rely on the hearing I have. I have become great friends with the phonak and starkey hearing aids I own. I don’t have perfect hearing with my hearing aids but they make up for a lot of lost ground.
- Ear molds are better then domes. This is an individual thing but wow a big difference for me. I was given domes then got moved to closed power domes in my hearing aids. They annoyed me and I could hear better with my finger in my ear with them. When I bought this up I was told it just took time to get used to. I then went to another audiologist and they told me my hearing loss was to great for the domes and that is why I was having the problem. I was told I needed the ear molds and I sure can tell a difference. What I learned from this, you know what you need. If it doesn’t work for you and you have a finger in your ear, it isn’t working. I will never use domes again. You can change doctors nothing is set in stone.
- You are not alone. Family and friends supported me and listened to me but I needed to find someone who understood me. I have found friends and the Say What Club. They understand hearing loss. They can laugh with you and help through the tough times. I urge anyone who is going through a trial to seek out a group that understands. As a fellow SWC friend says you need your tribe. You need the people who walk in the same shoes as you do. Seek them out!
- Car radios suck. Ok so I am blunt and to the point. Maybe this again is just me. I try explaining to my husband I can hear the music and the beat but I very seldom can make out the words. I can hear parts of words but it kind of sounds like a broken foreign language. I will keep the radio on I like music but the words nah can’t do it. But I have never been able to really listen to the music and get all the words so maybe this isn’t such a new thing.
- I have become to love the assistive listening devices I have. I was very stubborn at first I didn’t want to try these. I felt that I was not profoundly deaf or hard of hearing so I didn’t need these. I was wrong. I use the streamer on my TV a lot. It blocks out everything but the show or movie we are watching. It makes a big difference. I still use the captions but I seem to be more engaged in a movie if I use it. Otherwise I seem to lose focus and I am off doing something else. When we are watching a family movie I need to be involved and enjoy the time.
- Keep my family in the loop. My children know when I can hear them and when I can’t. If I say I can’t hear you they are really good at waiting till we are somewhere else and then ask me. My kids understand my hearing aids. My husband will hook up and ask if I want the streamer on the TV or for the music we are listening to. They support me and that makes such a big difference.
- Sign language- I know some but I need to learn more. When we are in a situation and I can’t hear my kids I would love to be able to use more sign. Today in church I used sign to my son and we understood each other. I hope another class will be offered soon in my area.
- Pimping and blinging my hearing aids have become an obsession. Heck if I can go and see all these fun glasses at the eye doctor why do hearing aids have to be beige or dark brown in my case. I can decorate them and maybe no one will see them but I know they are there and sassy.
So here is my list of 10 things I have learned this past year. I wonder what my list will look like in another year.
Oh how I hate the afternoon and evenings on the day of Thursday. You might wonder but tomorrow is Friday? Why is this one day of the week such a thorn in my side. It is because of my son, or at least the what this night does to him. He get off the bus around 3:15 and there is a constant whiny sound you will hear till about 6:30. This whining will then lead to stomping then crying then sobbing till we can’t whine anymore. Yes it is annoying and I hate it but my heart breaks at the same time. Henry is in sensory overload by Thursday night. Have 4 days of school, 2 nights of TaeKwonDo, and a night of church have reached their limit. He has tried to hold all his feelings, emotions inside and by day 4 he is a bear. He explodes and we know to expect it now. He is passed out now and I hope he sleeps till morning and then tomorrow is a fresh day and Friday is always a fun day. He gets the rest his body and mind needs and we can get up and face another day.
Now I had a great Thursday. I needed to drive to the audiologist which is about a 40 minutes away. It was a follow up appt and to change some programing on my hearing aid. I knew it would be a short visit so make it worth the drive. I picked up a friend and we were off. We shopped without kids, talked, and stopped to eat a meal. I wish the world could listen to us at a perkins table. We could run the world with such ease. It isn’t complicated we have it all worked out, just listen to us. I am glad we had this time together we made it a great morning.
We all have our Thursdays. Times when we want to crawl into a ball and cry and shut out the world. The world has a lot of pressures and they can come in at all sides. My heart breaks that my son feels all those pressures and they all soak into him till he bursts. He is sleeping so calmly now. My prayer for him is a restful sleep that will take all the stresses and anxiety away, way too much for a 5 year old.
I hope you all have a restful Thursday night and you can all feel fresh and new for Friday.
I thought I would share the weekend/week that I lost hearing. I haven’t talked about this to very many people but I have met some awesome people in real life and on the computer that I see that it isn’t something to hide or pretend it isn’t there it is who I am and that means it is ok.
I was at a TaeKwonDo tournament in fact I have a blog posting from that event with a picture. I felt fine that day and had a great time. That night we went to my in-laws house and we watched a movie on TV. No big deal just hanging out in the living room. Well I couldn’t hear the words on the TV. I could hear an occasional commercial but not dialog from the movie. I grabbed the remote and turned it up and everyone complained how loud it was and turned it back down. I just couldn’t understand what was happening so I went to bed thinking I was getting an ear infection and my ears were probably filled with fluid. Next day was church and again I noticed I really couldn’t hear well at all. But I didn’t want to say anything to anyone. I smiled and tried to answer questions but I was more then ready to go home when the service was done. That night my husband asked me to sit down at the table. He looked right at me and asked if I could hear ok. I played dumb and asked why. He said I answered questions wrong at church like I hadn’t heard what the person had said to me. I just said that maybe and I was probably getting sick. Well the next day Monday is what freaked me out. Those that know me know I don’t freak out. I was to sub for just a quick 30 minute job at the school. I just had to read to some young kids. I love to read so thought this will be fun. I went in and started reading and it was going good till all the kids wanted to ask questions at once. I couldn’t make out what they were saying and I think I started having a panic attack. I was able to leave right about that time. I went out to the vehicle and just sat and couldn’t do anything. I was in shock. I grabbed my phone and made a call for the doctor to get my hearing checked.
Next day I got in and had my hearing checked. It showed a mild mixed loss. Mixed meaning I have so much scar tissue in my ear from countless surgeries, infections, burst ear drums that I have a conductive loss. I also have a sensorineural loss which is what I am guessing came on very sudden. I go home with really no answers but get a call to go to an audiologist the following day in a neighboring town. I went and had more tests then the first time in fact over an hour I was in the booth having test after test. I was found to have a mixed loss that dipped down into moderate hearing loss in the frequencies where speech is most important. I wasn’t getting sick, or crazy I had entered a club of Hard of Hearing.
The audiologist was very nice and explained how hearing aids can’t bring that hearing back to perfect but it would make a big difference. So I ordered my Phonak hearing aid (only 1 need to save up for number 2). I laid pretty low the next week or so. I didn’t work at the school or really see anyone. I got the hearing aid and the first thing I noticed was I heard the clock on the wall. I hadn’t heard that when I went into the office. I have had to have the hearing tweaked a few times and the levels upped a few times also. My biggest difficulty is in a large group understanding someone talking to me or someone talking soft to me. I need to work on lip reading for those situations.
Everyday I feel a little bit better about the situation. It was another thing in life you don’t plan for and don’t anticipate. I have joined a great group online and it makes you know that you are not alone. There are others out there that are going through the same things that you are.
Everyone has a story we just have to let that story out so others know what yours is.
My Daughter is one of the strongest girls I know. She has been through a lot in her 10 years. She is one of the most caring, feisty, and good friend you could ask for. I have talked a lot about my son and the amount of energy he takes to raise. My daughter falls to the side at times and I thought I need to brag about her some.
Yesterday I had an audiology appt about 40 minutes away from home. The nice thing with vacation is my husband was home with Henry. So Greta and I road tripped to town. We had the best time!!! We talked school, friends, TaeKwonDo and much more. I told her stories of when I went to Jamaica on a mission trip. It was 21 years ago yesterday that I went there. Seems like yesterday I went it is so vivid but telling a 10 year old that is was that long ago made me feel a little old. She loved hearing the stories of when I was young and in high school.
Greta went with me to my appointment and I think she enjoyed it. I think she was amazed that my hearing aid could be hooked to a computer and programs changed and certain sound levels upped AGAIN, all on a computer and seeing everything graphed out on the screen. Who knows maybe we have a future Audiologist on my hands. She asked questions and was just so grown up. She amazes me everyday where did my little girl go.
We ended up doing a little shopping in town and then headed home. Just so nice to hear her ideas in life and her likes and dislikes. She talked about bullying in her school. She is so determined to give everyone a chance and a kid getting teased or left out just whips her up into a frenzy. I really won’t be surprised if one day I get called to the school for punching a kid. I don’t advocate this but if she is defending a kid who is getting picked on I can’t fault her.
My dear Greta has a big TaeKwonDo test coming up. Next week she is going for her 2nd degree POOM belt( Jr black belt). My heart couldn’t be prouder. Watching them train day after day at the gym and their determination fills me with hope for these kids and their futures. The amount of information, board breaking, numchucks, and lots of other material is mind boggling but these 3 girls that are going for the promotion KNOW IT. This picture is from almost 2 years ago when she earned her POOM belt in 2012.
Raising a daughter who is not spoiled on money, would give her jacket to a stranger if they look cold, and feels their job is to defend everyone makes me feel like maybe I am doing something right as a mom.