Happy and You Know It . . . But What if Your Not?

I loved this song when I was a little Jeff.  But know Big Jeff needs to learn it in ASL.

What if your not happy?  Do we expect people to be happy all the time?  Do we hide our unhappiness?  Why?

I don't feel happy so I am not going to clap my hands and not afraid to show it.  I have been going around and around and around trying to figure out what to do with my hearing.  I have been at home for the past 4 days resting and becuase of that my hearing is better.  I haven't been wearing my earplugs because when I do the tinnitus I have is really bad at night and the next day I feel bad.  Today, I went out to do some errands and get ready for my 13th Anniversary and I feel terrible.  The pain in my ear came back and I tried to listen to people but my ability to hear them was bad - like muffled.

I am still not sure about getting a cochlear implant but then again I don't want to go back to work wearing earplugs and having to deal with tinnitus and ear pain along with not able to hear much.

I am just not sure and really confused.  Do I get another opinion but the doctor I saw is really, really good.  I can fly to Los Angeles to one of the best in the USA but that will cost alot since my insurance is not accepted there.

OH MY!  Well I leave you with this song:

Cowardly Lion Needs Courage

Wizard of Oz

Who was your favorite character in the movie "Wizard of Oz"?  And please don't say Dorothy because everyone thinks she is adorable.

Do you remember what the lion wanted from the Wizard?  Courage.  But do you remember throughout the movie he stands up to the witch and the wizard.  He had courage all along.

I am at a place in my life right I need courage.  I fear the journey and need to find friends to help me along the way. 

Right now, today, I can hear sound and I read lips to understand what people are saying.  The problem is hearing sound, almost any sound, hurts my ears.  So, this is what the doctor wants to do:

1.  I qualify for Cochlear Implant.  The doctor wants to do both ears eventually.  He will start with left one first.  To learn more about Cochlear Implants (CI) go here:  http://funnyoldlife.wordpress.com/cochlear-implants/ 

2.  After 6 months I can have CI for right one.

3.  The doctor actually wants to separate the Stapes bone from my cochlear so there would be no sound at all until I get my other CI.  I am not sure what that idea.


Having CI is going to be a big change for me since I am vain and nervous about hearing things differently - the sound not being the same as a normal person.  I know sound hurts me but its natural hearing but with CI its robotic.  I have a lot of new hearing loss friends and they have been a comfort to me.  They have also helped me process a lot of information and questions I had regarding hearing loss and CI.

So, I am off to see the Wizard to find my courage and press forward to see what the next chapter of my life will be like.  Well I leave you with list wonderful click from the Wizard of Oz. 

Ear Infections and Jeff Update

Have you ever had an ear infection?  They hurt and irritating.  I remember as a child I use to get them all the time, which was an early sign there was something wrong with my ear canal.  Well at least now I have ear tubes to help drain the fluid.  Also since I had sinus and ear infections throughout my 41 years and taking medication my body became resistant to oral medication and had to fight the infection with IV therapy. Watch the video to learn more.

Actually, it has been a several weeks now I haven't had any infection.  I know I was on some strong drugs during my 10 days hospital stay and 6 weeks of IV therapy but it is nice to know the fluid in my hear is draining, which prevents ear infections.

Here is a good link to learn more about ear infections: http://www.mayoclinic.com/health/ear-infections/DS00303

So while you are at it check out the difference between hearing things normal and those with moderate hearing loss.  
http://www.phonak.com/com/b2c/en/hearing/understanding_hearingloss/how_hearing_loss_sounds.html
 

Speaking of ear pain, infection, and other stuff the ENT thinks I might have loss my hearing recently due to meningitis but it is difficult to say because I was already on medication.  My ear pain is really bad at night and barely get 4-5 hours of sleep for the past several weeks.  I finally went to a pain specialist and got some good advice on how to deal with it better.  I hope it works.  It has been awhile since I have slept a full night.

I look forward to one day not having ear pain other than typical ear ache.  

Dead Battery - New Battery

I guess we will call this month - "Battery Month".  New $60K battery in my butt (Interstim).  New battery for my car ($120).  Emotional battery charged  - - - free. 

I am thankful my car battery died in my drive way before going to Cartersville, GA.  I can't imagine being suck somewhere on the street or freeway and only having text to speak with someone.  I mean I guess I could use IP-Relay but people hate receiving ip-relay calls.  Unfortunately, I can't talk on the phone because of the sound sensitivity.  I had a 1:00pm appointment to see my bladder doctor (post-op followup) but when I went to turn on my car it didn't start.  Nowadays I hate driving long distance in the car because I have issues with balance and my ears hurt with all the loud noises (well at least for me anything is loud).  I was not looking forward to going at all. 

So I got my wish and didn't have to go.  I got my car fixed at a place near a Barnes and Noble.  I was craving to go visit and see the ASL books they have.  And of course I had to stop by Teavana to get a cold ice tea.

Well today didn't end up going according to plan but I think God had me covered.

How was your day?

Up and Down - Teeter-Totter Game

Do you remember playing on the teeter-totter?  Did you like being up in the air or down on the bottom?











It takes a lot of effort to talk to the hearing and pay attention to their lips and not to mention they have to keep it to a minimum because my ears hurt after awhile.  What kind of relationship is telling someone I am tired of hearing your voice sorry I will have to talk to you later? I know the doctors are doing their best to help me feel better but where is the "FINISH LINE".  When can I finally go outside and not be afraid of noises. 

I am tired of playing teeter-totter.  I am fine with not hearing, that's not the issue, its the ear pain. The only way I get some relief is locking myself in my room with no sound and no people around me.  What kind of life is that?  I just want the magic pill to help me sleep at night and stop the ear pain throughout the day unless if I have my earplugs in.

Well, I am trusting God will continue to provide me with resources to work through this experience.

Amen. 

I guess this is my finish line statement
Psalm 30:11 - "You turned my wailing into dancing; you removed my sackcloth and clothed me with joy . . ."

Questions Day

This post today is for my hearing friends. 












Some of you might have questions about what it is like being deaf or hard of hearing.  You might be concerned about your hearing.  Let's talk about this and not jump to any conclusions or remain in the dark with unanswered questions. 

SO TODAY IS YOUR DAY.

ASK AWAY AND I ANSWER THEM.

Can I Be Like Charlie - - Golden Ticket

I want my Golden Ticket.  Why can't anyone figure out why I lost my hearing and why I have ear pain.  It will be almost 2.5 months since I left the hospital, seen so many doctors, daily IV therapies, ABR, and several ct-scans and still nothing.  If someone can find the Golden Ticket maybe Willie Wonka will know why my ear hurts.

I am just complaining today.  Forgive me.

"Back to Jeff's Future"

Everyone has either probably heard or seen this famous movie, "Back to the Future".  If not, you can read about it on IMDB.com.  The movie is about going back in time to fix a mistake so the future you can be safe.  Love the movie and Michael J. Fox did a good job in his role.

This post is not easy for me to write and took some time thinking about it.

I am deaf. 

Would I want to be like Michael J. Fox and jump in a car and fix my current situation? No, I wouldn't.  But does that mean I have given up hope or want to hear again?  No, it just means I have gone through the grief of losing my hearing and accept it for what it is and learn to deal with it. 

I am not sad, mad, or afraid of being deaf.

So, don't try to change me!  Don't expect me to be a Giraffe when I am Jeff. I don't want to change to your needs and wants.  Why not learn about my world by reading articles about being deaf.  And by the way, each deaf person is not alike.  Why not learn sign language to communicate with me?

My acceptance is not surrendering to grief of my hearing loss.  My acceptable means my life is a bit different than yours.

Would you change things about yourself if you had a special car that can go back in time?  What would it be? Why?  Is it wrong to be content with having a disability?  The last time I checked the newspaper I would consider all of us in some sort of disability?

Did You Hear Me Howl?

"CHILDREN SHOULD NOT WATCH THE FOLLOWING CLIP"

   

The clip above is from the TV show "Being Human", the UK version.  The U.K. version is much better than the USA version (like most films).  I believe the UK does a better job at character development than USA.  We here in USA just love our entertainment and technology.   I highly recommend you watch it if you like suspense and horror. The show is not boring and not too scary.

Anyway, I am not here to talk about a movie on my blog.  I am so sorry if I woke you up this morning hearing me howl.  Forgive me and go back to sleep.   

I think I almost lost it during the Auditory brain-stem response (ABR) audiometry.  The audiologist told me before the test the decibel rating is about 80 and I can only really handle 30-40 decibel conversation without ear pain.   The test is to determine how the nerves are functioning when a sound is transmitted from my ears to my brain-stem and them back.  When the test started it really hurt.  I could feel the wolf transformation starting and my claws coming out but I had to remind myself to sit still and get through this test. At first the noise was so loud and I howled, she stopped and asked me in the dark, "Do you want to stop?"  I told her to turn on the light and speak to me since I can't see your lips.  I decided to continue.  The test was about one hour.  The ENT doesn't just want to just give me hearing aids and call it a day.  He wants to find out why I have sound sensitivity and ear pain The test is done and I will get the results shortly.

But, the test was only part of me howling this morning.  I almost completely turned into a werewolf.  It was my wife being there that kept me calm.  What pisses me off is the Audiologist didn't really consider my deafness when speaking to me.  Whenever I meet someone new I always start out with telling them, "Hello.  I am deaf.  I read lips so please look at me when you speak."  I am straight-forward and get it out of the way.  I feel if people have a problem with looking me in the face and they don't want to include me in conversations that great I rather there be silence.  

You would think if someone is coming to see an Audiologist they might have issues with sound so why wouldn't the Audiologist be more respectful.  You would think the Audiologist would find out first the best method of conversation is for me, especially since I am paying for the service.  The Audiologist reminded me of my favorite TV show called "Switched at Birth", when one of the parents didn't consider their biological child being deaf and best method of communication.

WARNING - If you don't want me to make me "howl" please be respectful and look at me when you speak.

I have to go rest.   

 

Night Time is Not Easy

I remember when I was a kid I used to love to sleep.  I would sleep in late on weekends and hate waking up early to go to school.  I remember whenever I went to sleep I would have different types of dreams and remember them the next day.  I would keep a journal of what I dreams to see if any of them about me would come true.  

Pain has a way of keeping you up at night.  That's my life story now with very little sleep at night.  I know my ear pain is temporary and doctors are trying to figure it out.  But when I have sharp ear pain, ringing in my ears, or nausea it take me quite a bit of time to recover.

So, I am seeking advice and comments on what keeps you asleep or awake at night?

 

Expectations

Limbo Dance

Most of you know the game called Limbo.  The way the game is played is two people hold each side of the pole and another person goes underneath it without touching it.  If the person touches the pole he is out and if he doesn't touch it the pole goes down lower. It's a fun game and kids love it at parties.

Expectations can be a great motivator and also a killer.  Look at my picture again - who expects the giraffe to win the Limbo dance?  I think the giraffe can try his best to stay in the game for a few tries but there are certain limitations to how far the giraffe neck can bend to get under the pole without touching it.  Would it be fair for me to say to the giraffe, "Mr. Giraffe, I don't expect you to last long but give it a try"?  Is it the giraffe's fault he has a long neck and chances are he will not last long?  No, but we don't have to say anything, unless to cheer him on.  What if we said to the giraffe, "Mr. Giraffe, better luck next time.  If you practice you might get better at it for next time," using expectations as a great motivator? 

If you have a heartbeat then at one point or another you consciously or subconsciously put expectations on others.  The expectations may not be even reasonable and if verbalized can possibly hurt someone.   For example, should I expect my wife and kids to remember ALL the time when they need  to speak with me to come tap on my shoulder or not to scream near my ears, or use clear speech.  No, it would be silly to think they will remember it every time, regardless of my limitations like Mr. Giraffe.  I think it's just reminding them of critical things I need in a healthy relationship and not expecting them to remember all the time.  Yes, it might mean I have to remind them 300 million times, but they will learn how to limbo better each time.

What expectations do you have of others or of yourself?

Reflecting Back in Time

I have come a long way from losing my hearing several months ago.  The amount of time I was in the hospital, getting my Caption Call phone, and becoming proactive in the Deaf/Hard of Hearing support groups.  I went back to one of my old post and read what I wrote about suddenly losing my hearing.  I was pretty depressed.  l I think I am handling this pretty well.  You can read a sample post here called Dilaudid.  I think its important to take a moment and just reflect.

I believe we are given certain situations, whether one considers them good or bad, to develop oneself and connect with others.  I do not believe God's intention is for anyone to be sick but believe it is just part of being human. I have had some wonderful conversations with people who have helped me through difficult times and in return helping others through similar situations.

Nobody is certain what will happen a few days, weeks, or years from now with my hearing.  I know one thing is I will be smarter about my disability and help others who might be in the same situation.

But for now - - - - I just want to say thank you to all who have helped me in the past and being part of my journey.

Take time today and reflect.

Inside My Brain

Some of you may not know this movie but it is called "Fantastic Voyage" made back in 1966.  I saw it many, many, many years ago and loved it.  The movie was about shrinking people in a spacecraft down to miniature size and inject the spacecraft into a human body.  The movie is interesting and recommend you watch it if you don't mind - OLD FILMS.

Today, I wish I had someone go inside my brain and figure out why my drugs will not work to cut down the pain.  I think its the drive to "way-the-heck-out-there-Cartersville, GA" that put my ears in so much pain.  I wonder if its the motion of the car, the noise, the stress, and anything else you can think of.  I just want to ripe my head off and call it a night.  And, yes, I have tried taking something for the pain and just not working.  I even tried meditation and watch the T.V. show Lost and that didn't work. 

Well on the bright side I have a heart beat today so I guess that spacecraft doesn't have to visit that part of my body. . . . .


BTW - I am having surgery on August 6th so I may not blog until I am coherent.  If I do blog and it doesn't make any sense please just send me a text or delete.  Love to all my viewers.