Full Day with Hearing Aids with Family

Sound overload - that is how I feel.  I know I just got my hearing aids (HA) and I am really happy to hear sounds and words.  I had really bad hearing in both ears and my speech discrimination is poor.  I was severely deaf in both ears and now with my HA's I am about mildly deaf in both ears, which is amazing. 

I am trying to get a good idea of what I can handle with my hearing aids and what limitations I have with each hearing aids.  The premium HA's I have can be programmed various ways depending on the environment I am in.  The hearing aids will immediately adjust to different environments and cut down on uncomfortable sound levels that might hurt my ears.  The problem is my hearing level and my uncomfortable sound level are very close so I don't have much room to play with.

Let see I went to bank today (that was really loud), Starbucks (hate when they use their blenders), lunch at Chi k-fila with family, then finally the Mall of GA.  If you remember a month or so ago I posted a blog about my bad experience at the Mall - http://myworldofsilence.blogspot.com/2012/07/not-cool-anymore.html I think I should still stay away from the mall on the weekends.  I am surprised I am the only one having sensitivity issues with these noises and it does even bother people with normal hearing.  Maybe people just don't care until they lose their hearing. 

I am know upstairs in my room in silence so I can rest my ears and my head.  I actually took off my HA's so there would be silence.  WOW!  What a difference having them on one moment and then off.  I didn't even realize how deaf I am.

Technology is amazing but I sure how this technology will work for me.

Sound with ReSound

Meet "Bionic Jeff"











Actually with all my gadgets in my body I feel more like this:

Everyone loves C3PO from "Star Wars"












I spent almost 4 hours last night with my audiologist.  I didn't even know I was taking home my hearing aids until she pulled them out started putting them together with temporary domes.  I got the ReSound Alera 9000TSG series but will eventually get the ReSound Verso.  I am waiting for them to add the TSG (tinnitus program) to the product.  If you are not familiar with tinnitus you can read about it here.  I needed top of line hearing aids because of my complicated hearing issue. I am definitely an atypical patient when it comes to medical concerns.  That was true for my "gluten intolerance", "interstitial cystitis", "migraine-lite headaches", and "loudness recruitment with sudden hearing loss". 

I am very fortunate to only be without hearing words for seven months.  I know way too many people out there that have struggled since birth or even several years.  I hold a very special place ion my heart for each of my new deaf and hard of hearing friends. 

Going back to last night and what happened.  I left audiologist office and rushed to my car to recharge my phone.  I then called the most important person in my life, which of course is my wife, on my cellphone.  She thought I was in danger because I haven't used the cellphone other than text for 7 month now.  I had to tell her I am okay but guess what,"I am talking to you on my cell phone and I can hear you clearly."  I started to cry.  I don't think my wife actually believed me.  I had to pull over because when my wife put my kids on the phone that was it for me.  I couldn't hold back the joy of hearing them talk.  I was crying so much my head started hurting.  I have missed hearing the words my special Abby (10 years old) and my witty older daughter Elizabeth (12 years old).  I called the rest of my family after that to share the good news with them.

NOW!  PLEASE keep in mind, hearing aids is not a solution to normal hearing.  I will never hear as a normal person again.  Once you loss your hearing and damage your ears - its gone.  But with technology today some are able to use devices to help or at least communicate using texting or American Sign Language on a videophone.  

My brain needs to hear new sounds I have not heard in awhile.  I have suspicion my hearing has never really been okay and when I got sick in April with mastroiditis that was the end.  My brain has to get use to hearing my own voice and others called a learning curve.  ALSO, hearing aids may not be the best option for me.  My ears are progressively getting worse and one day might need cochlear implants but for now I will enjoy my ASSISTED HEARING DEVICE.

Finally, even though I can hear with my hearing aids, there is still a special place in my heart for silence and helping the world understand silence is golden.

Hello. May I Take Your Order?

I was starving after seeing the audiologist today and had to make a quick stop to get something.  I drove up and went through the drive-thru because I didn't want to go inside and had to get home to watch the kids.  I was just sitting their waiting to tell the person my order and then it hit me . . .

I CAN'T HEAR THEM.

It turned out they were asking me for my order a few times.  I ended up going inside and explained I am deaf just wasn't thinking much about my ears and hearing with them.  .

Habits can build you up or tear you down.  Bad habits are easy to find and learn and when you want to break them it takes forever.  Good habits are like diamonds you have to polish them daily.

My habit today was thinking I could hear with my ears again while going through drive-thru.  But you know what, given this week is Deaf Awareness Week,  I was able to use this experience to share that not all hear the same way but we all hear one way or another.

Random Thoughts

Blog of  Random Thoughts

1. I am nervous about what my MRI results will show given how much pain I have been in.  I am glad I can have a 1.5 tesla MRI, thanks to neuro-stimulator upgrade this August.
2. Even with hearing aids or cochlear implants I might still have loudness recruitment until the day I die. 
3. Is there any way to truly go completely deaf in both ears so I don't have to worry about noise anymore?  "Silence is truly Golden".  Yes, I know that is selfish but most people would be asleep now and not up trying to figure out what drug to take to fall asleep.
4. I am not ready to go back to work.  I have to get a good plan down on how to handle my ears.  What boundaries I need to set to protect myself.
5. There are so many deaf and hard of hearing friends of mine I wish I could hold them all.  I hope my stories bring some comfort.  You know the say, "There is always someone worse out there so be thankful", well I hope that person for you is me.
6. There are so many new friends that have helped me, inspired me, supported me, and I am truly thankful.  
• These people are:  Karen Akins Swartz, my wife, who know has no more vacation or sick time because she spent it on my illness in the hospital in June.
• Dan Schwartz, he is so smart and knowledgeable about hearing.  He reached out to me in such a time I am very grateful.  He is nerdy and I needed someone to help me with understanding what doctors and audiologist were saying.  I still don't understand why he spells his last name wrong.  Thank you again Dan.
• Shanna Barlett Groves, Cynthia Dixon, Monica Hood, and so many others have inspired me to keep my head up and share my stories.
• My family, especially my Mom who has been stressed out for months about me.  Both of my brothers, Brian Swartz and Jason Swartz, who constantly text and call me to make sure I am okay.
• Mission to North America, where my wife works and their prayers for me.
• DeVry University, where I work, thanking them for believing in me and will return shortly.
• Finally, thank you God for keeping me hopeful and believe your angels are watching over me.

Okay, Benedryl has kicked in and feel sleepy.  Blessings to all.

Nearly Killed Me Today

I knew it was going to be a really bad experience going to the diagnostic place today for my MRI.  I spent $150.00 for custom ear buds and used the  headphones thinking it will hurt but I will be okay.  YEAH RIGHT!  By the end, I was in tears.  I don't think the nurse knew what to do when she saw me crying.  All I could tell her was that I have severe recruitment and can't handle noise above 30-40dB.  She pointed out that most USA MRI's are about 140dB.  I immediately went out to get some Tylenol. 

I wrote about my loudness recruitment in an earlier post.  I recommend reading more about it so that you can know what I am talking about when I mention recruitment, which is different from hyperacusis.

1.  About decibels:  http://myworldofsilence.blogspot.com/2012/07/decibel-hulk.html

2.  Recruitment - http://myworldofsilence.blogspot.com/2012/07/not-cool-anymore.html

There are some people in the deaf and hard of hearing culture that have hyperacusis and recruitment but from speaking with them it seems that most of them feel pain but it goes away quickly.  When my ears hear above a certain level for a short period of time the pain in my ear doesn't go away for hours.  The doctors are still not sure why this happens, but it's why I had such a difficult time with the MRI today. 

WELL THEY BETTER FIND SOMETHING OUT BECAUSE I AM NEVER GOING TO DO THAT AGAIN!

Ready to Run

I started my "World of Silence" blog back on July 9th.  I decided to go back today and read my past writing and boy have I come a long way in short period of time.  The first one was called Who The Hell Knows.  I didn't realize how much of a difficult time I was having going suddenly deaf in both ears and severe ear pain from loud noise - actually any noise. 



I am not much of a runner.  Actually, I really hate running, whether its a short or long distance.  The idea of having to put on running shoes, wear those tight shorts and shirt so you can go faster and sweat doesn't stick to your clothes, or even the stretching you have to do before you run is so boring to me.  I rather go to Starbucks and race to the front of the line for my tall BOLD coffee of the day. 

The physical strength of running short distance is really difficult.    I remember in 6th and 7th grade having to run short sprints.  I had big feet and walked like a duck so when we had racing time during P.E. I was never picked to be on someone's team.  I really admire those who can run. 

But running is part of life.  There is no such thing as standing still in life.  If you just think about your blood in your body or your brain and how it works.  Your brain and blood never stop running - until the day we die.  My world of silence is about running a long distance race.  I know my hearing will not be the same as it was a year ago but with assistance I will be able to decide when I want a moment of silence or hear a familiar sound.

Oh by the way today I went to sporting good store and bought one of those running shirts knowing this race to hearing again will be a long one.  Who's on my team?

Music Is Magical

This is my soon to be hearing aids.  I will have them on both ears, sort of like high definition surround sound, and the cool thing about these hearing aids is it is completely wireless.  I will be able to stream TV, radio, conversation, cellphone, etc to this small hearing aids.  The picture looks big on this page but it is really small - not that I care.  Actually I want really bold colors for it so I can show it off.   Oh, maybe glow in the dark ones!  The first thing I am going to do when I get these on my little ears is  . . . .  play music.

Yes, I miss hearing my wife's and kid's voice but I really want to hear music.  I use to sit in my car for hours listening to tunes.  The sounds of indie to classical are going to fill my ears and Jeff will be happy again.  I know its not going to be right away because I have to get use to it and my brain has to learn to hear things but in time it will be crystal clear. 

My wife and I some nights would just grab the computer or drive in the car and listen to different tunes and share what we thought about it.  Music is a great conversation piece and one of the things everyone in the world knows, even in the most far away place, is music.  Well they may not have an iTunes but people know what a melody and rhythm is.

I imagine Heaven being a place where all you do is listen to music and share with one another deep feelings about what you hear.  Now, I will be able to listen with my ReSound Alera.

I CAN'T WAIT TO HAVE MUSIC DATE NIGHT WITH MY WIFE AGAIN

I CAN BREATHE and JEFF EAR UPDATE

I CAN BREATHE.

Last night was the first night I breathed through my nose and didn't snore.  Now I have to get my wife to stop snoring since I still have a little bit of hearing in my right ear.






 What is next thing in my life since nothing is ever dull around here.


A miracle happened last week Let me explain.  Karen and I went to go see the cochlear implant doctor again just to touch base.  There are only 3 manufacturers out there for cochlear implants and the doctor I was seeing didn't do the one I wanted.  I have done extensive research, asked a lot of questions, gathered information from all 3 manufacturers, and I wanted Advanced Bionics.  The sad news is I have to find another cochlear implant physician.  My wife and decided the choice of brand is more important but of course we don't want to choose  a poor surgeon.  I rushed home and called other cochlear implant surgeons.  I knew the next step I had to take was to see audiologist and qualify for cochlear implant before scheduling a date. The type of cochlear implant auditory test is different than other ones I have had in the past.  I called an audiologist that works with a good surgeon here in Atlanta area and was able to talk my way into seeing her the following day.  Unfortunately, she was not as great as I thought and just told me to go back to work and read lips.  Now, I am against the clock because I was having nasal surgery on Monday.  I had to have nasal surgery completed before having any ear surgery.  I called Dr. Bhansali's audiologist and we spoke on the phone.  She told me to come in Friday but that I might not be able to see the surgeon because he was scheduled for surgeries.  Dr. Bhansali is a great surgeon but some people don't like his abrasiveness.   Dr. Bhansali was the last option here in Georgia or I would have to fly to Baltimore and go to John Hopkins, which is the best place in the USA for cochlear implants.  The problem is I don't know anyone in Baltimore.  When I arrived to meet with Jocelyn, the audiologist, she mentioned Dr. Bhansali was available to see me because his surgerie had gone quickly.  I turned to my wife and said, "This is God helping us out."  The typical waiting time to see a doctor like this with an appointment is several weeks to months and I was able to see him without an appointment.

THE INTERVIEW
The interview went well.  I mean he is straight-forward but he was thorough.  I could sense during the interview process that he didn't believe that I had  hearing loss and something else was going on because my ABR was normal.  His comment on my audiograms was, "There are some people who can essentially lie on the audiograms."  Anyway I went back with audiologist and she did her test.  The audiogram came back with the same results as previous test from 3 other audiologist, which shows I don't lie on the test, but now my right ear shows signs of an abnormal ABR.  With the results of the test he came back into my room and said I am progressively losing my hearing but he thinks I should wait a little bit longer until cochlear implants.  He sees me needing them in the near future and he works only with Advanced Bionics, which is the brand I want.  He wants me to use hearing aids for few months and then get re-tested for cochlear implants in 6 months unless hearing aids do nothing for me, which could speed up a re-evaluation for implants.  He is hoping the hearing aids will suppress the loudness recruitment I experience, which is why I have pain in my ears, yet still give me some improvement in understanding speech.

Regardless what others have said about him I like him.  I guess I surprised him with my hearing results.  I am still severely to profoundly deaf in my left ear and my right ear is moderate to severe.

I will be returning back to work  once I recover from my nasal surgery and get the hearing aids - hopefully by the middle to end of October.


Please pray my hearing aids will  help with my recruitment and that I will find money somewhere to pay for them.


What a journey this has become.

 

HOPE

I have not felt hopeful in the past few days.  I have been really tired from not sleeping at night because of my ear pain - recruitment.  Also, getting everything ready for my surgery on Monday.  I am very sensitive when it comes to my nose.  The idea of having someone put instruments inside my nose during and after the surgery doesn't give me warm fuzzes.  The surgery itself will be easy but the recovery I heard is not pleasant. 

I hope once I am healed from this surgery I will be able to breath better and have less sinus infections.

I hope to be able to go back to work soon.  I miss working with students and helping them work through their academic challenges.

Also, I was hoping the process for getting a cochlear implant (CI) was going to go quickly but there are several other steps I need to take.  The audiologist is the person you work with the most throughout the CI surgery and afterwards.  The CI surgeon just puts in the device and off he goes.  So, I have to find a good audiologist and building a good relationship with her.  I will be spending a lot of time with her after surgery and for many years after.   The audiologist I saw today was not on my favorite list.  I am interviewing another one tomorrow.  The scores on my audiogram are still the same:

• left ear - severe to profound 
• right ear - moderate to severe

I hope insurance when they get all the documents about getting a CI on my left ear will not say, "No", because I have not given hearing aids a chance.  I can't really use hearing aids because of my recruitment.

I will find out soon.  So to all my wonderful friends and family please cross your fingers that everything works out before my short-term disability runs out.

NOW OFF I GO TO BED - I HOPE

Hear the Shofar - Not This Year

Shofar - Rosh Hashanah





I am what you call a "Messianic Emergent Jew".  I created a blog a long time ago which has a lot of writing that talks about religious and family stuff.  I was born and raised Jewish but accepted Jesus as Christ when I was 13 years old.  If you want to read more you can go to Still Jewish Blog.  

Anyway, I don't want to get too religious with this blog because there are Jewish people that think I am crazy to think I can still call myself Jewish and then there are the Christians who think I am too liberal to be considered a Christian.  I guess you can say I love God with all my heart, soul, and strength.  

Every year I go to a place of worship with other like-minded people who were once Jewish and accepted Christ as their Lord and we go through a beautiful ceremony welcoming in the Jewish New Year, which starts next week.  Rosh Hashanah (Jewish New Year) starts first and then ten days later you have Yom Kippur (Day of Atonement).  During this time period you reflect on your possible wrongdoing towards people and make amends.  You see, God has already forgiven us so it's more about forgiving ourselves and each other, and in Judaism this is the time period to get your life in order.  During these events, as the link talks about above, "Shofar - Rosh Hashanah", the chanting is so beautiful and you get to hear the shofar.  Here is a sample:

 

I was thinking I will not be able to hear the Shofar this year.  After all these years of hearing it I will not be able to.  Yes, I remember what it sounds like, but I want to be able to experience it anew this year.  In all my years of going to temple I never once saw someone signing or providing any type of technology for the deaf.  How does a deaf person hear in a synagogue?  I believe most synagogues are not as technically advanced as  the Christian churches that use PowerPoint or Captioning.

I will have to investigate this further and see what Rabbi's are using in their services for the deaf other than lip-reading.

Even though I am not going to service this year because of my ear sensitivity issues, my new year will begin at the end of October with my new Cochlear Implant.

HAPPY NEW YEAR AND MAY GOD'S SHALOM BE UPON YOU

 

I Don't Get This? Please Explain.

The topic today is for mature audience but needs to be addressed:

You can get a box of trojans for free at several places to have one night of fun.







But

This box will cost you $3-4 dollars to protect your most valuable asset like at a concert (classical or modern) - YOUR EARS.









I wish someone would set up an organization that would give away free ear protection the way Planned Parenthood gives away free condoms.  Or musicians could offer free earplugs at their concerts as part of the ticket price, to preserve the hearing of their listeners.

LOSING YOUR HEARING IS NO JOKE!  Buy ear protection.

For reference I am not against Planned Parenthood and what they believe.  My point is why is sex more important then your ears?

Rollar-Coaster Day

"Excited" in ASL

Today was a roller-coaster of a day.  I woke up not in the best of moods.  I was feeling sad and angry because I really want to hear.  My body has been through a lot in the past few months; bladder surgery and ear tubes.  Also I was in hospital for 10 days in June and still nobody knows why I loss my hearing as well as experience severe ear pain. 

Now, I have to look forward to nasal surgery in 2 weeks and hopefully squeeze in a cochlear implant in the next month before my short-term disability runs out by end of November. 

I have been in a waiting period for the past few days waiting for my ENT to schedule an appointment with another neuro-ENT over at Emory Hospital. I already went to one neuro-ENT a few weeks ago.  The first neuro-ENT said he would start with left ear implant and because of extreme ear pain he could separate the stapes in my right ear and wait 6 months later I get the second implant so I wouldn't feel so much pain from noise.  I don't have any issues with the 1st opinion but best to get another opinion since you only get one set of ears. I went today to my family physicians place to get my flu and meningitis shot.  While I was there I received a call on my cellphone, which I can't answer so I have to wait for call to go to Google voice-mail and for voice-mail to be transcribed.  It was from the ENT saying they made an appointment and it was going to be tomorrow at 9AM.  I rushed home after my shots and called the ENT.  I was so screaming with joy.  I thought I would have to wait for another few weeks to see the neuro-ENT.  I called my mom and text my wife to tell them the good news.  I am hoping to get my first implant around 1st or 2nd week in October. 

I went to the mall to get some lunch and make a cool t-shirt. 
Then I get a call on my cellphone and once again I had to rely on Google to translate of voice-mail and it was from Emory and it read, "in order for us to keep the appointment we need a copy of a cardiogram . . .".  I tried to list to the voice-mail but it was pointless.  My mind was going crazy thinking how am I going to get a cardiogram done before tomorrow morning and not have to wait for next appointment time.  I frantically called my wife on my cellphone sounding worried and said, "Honey, I can't hear you on my cellphone but please call the ENT and find how what they need and the Google translate said something like cardiogram.".  I rushed home quickly to find out it wasn't a cardiogram they needed but a copy of my audiogram.

I was relieved and everything is still on for tomorrow.
My day sort of felt like this:

Google voice-mail translate needs to get better.  But, by the end of October I will be able to take cellphone calls  - which is so cool!

Let's Talk About Blood

I am not a doctor so don't send me questions related to health but I have taken a few semesters of Human Anatomy and Physiology so I understand this chart.  The most important this is go get your number checked.  You can go to several places and get it checked:

1.  Go to Walgreens, Walmart, or pharmacy and ask the pharmacist to take your blood pressure.
2.  If you are in the green - good for you and thank your lucky stars
3.  If you are another color than you best get to the gym and speak to physician to help you get green.
4.  If you remain in remain in another color other than green for a long period of time you can have some serious consequencies.

Yep!  In the past few months I have seen my blood pressure go as high as 170/100.  I finally got it down to "Prehypertension".   Did you know tinnitus can increase your high blood pressure? You can find the article here from MayoClinic (http://www.mayoclinic.com/health/tinnitus/DS00365/DSECTION=causes).  I have been working out at the gym almost 3 or 4 days out of the week to get my blood pressure down to green.  I am almost there.  The last time I took it was 124/82.  The number you want to be careful of is the Diastolic (2nd number).  

So what is your number?

My Favorite Show - Switched is Back!

Switched is Back!: A new episode of Switched at Birth airs tonight on ABC Family. If you've never seen the show before, or just want to get a reminder as to who is who in the cast, here are two videos called The Beginner's Guides to Switched at Birth: Parts One and Two.

Read More at DeafNewsToday.com

Bionics

What color should I get?  This is the cochlear implant external processor I put on my head.  They have some cool colors.


The technology available today is really cool for those who have loss their hearing.  What I am learning is there are some advantages of being deaf that hearing people will never appreciate.  The biggest advantage of being deaf is having silence.  We recently went on a Ghost Tour in Roswell, GA over the weekend and there were about 20 people all together. The tour guide let me be in front so I can read her lips and have some fun.  But for the whole two hours of walking through Roswell trail there wasn't a time where people just wouldn't SHUT THE HELL UP!  Why can't hearing people just be quiet and listen to nature and enjoy the other sounds of life other than their own.  There were times I just wanted to turn around and yell at them all to be quiet, especially when the tour person was speaking.  It's not easy to lip read when you have background noise.

Technology today: cochlear implant and some digital hearing aids let you block out background noise.  Watch this video:

I can't wait to get my cochlear implant and enjoy going to a restaurant regardless of how loud it is.  The technology is called ClearVoice.  So, I will have super-powers with my ears.  I can turn off sound when I want silence and turn it and be just like a hearing person. 

My questions today is how is God going to use this gift.  I believe being deaf has made me a better listener and speaker.  You learn more about people being quiet.  Maybe I can help teach people to love the "World of Silence".

13 Years Ago

This blog is about my WIFE . . . come on . . .if I don't say something about her in my "World of Silence" she might "Silence me Forever". 

13 Years Ago, on August 28, 1999, Karen and Jeffrey Swartz got married.  We both wrote our own vows and when saying them I barely got through them being so emotional. 

TIME FLIES BY SOOOOOO Quickly!!!!!

Karen and I have had our share of rough times.  We got married in my dad's backyard in Los Angeles, CA instead of going to Las Vegas.  My dad has a beautiful house.  The wedding was small and the day was perfect unlike 110 degrees in Arizona where Karen and were living. 

Karen and I have so many differences but really like our differences and we listen to each other (well she listens more she I do more of the talking in the relationship).   We were 29 and 34 years old so maturity and willingness to work together at that age I believe is easier than early 20's or teens. 

Okay, I know you thinking who was 34 and who was the 29?  Any guesses?  I will let you answer that in your comments after reading this.

Anyway, we had Elizabeth shortly after marriage then Abigail was born 3 months too early.  Abigial had to spend a long time in the hospital with serious issues.  Some of the other thick issues were; several family deaths, bladder disease, breast cancer, brain surgery, loss of employment, move to Georgia, and now being deaf.  I believe each relationship has there "thick and thin" moments but what matters is what you learn about yourself and be good at compromising.

Tonight, I thought I would play on the number 13, like "Friday the 13th" and go to Roswell, GA for a Ghost Tour.  I have never been on one so it should be fun.  I actually emailed the coordinator at the tour location saying I am deaf but good at lip reading and if there were any accomodations so I can enjoy myself.  Karen was worried I would not be able to enjoy it because it would be dark and I couldn't read their lips well.   I got an email back from the company and they said they will bring a brighter lamp, focus on me so I can read their lips, and make sure I understand everything.  Isn't that cool.

So, I hope I get scared tonight!  I am looking forward to holding my wife's hands as we walk through scary Roswell, GA.

Thank you for letting me share my love for Karen and our adventure tonight.