Sunday, April 24, 2005

"Open Door"

Wow, God continues to open doors for me on this journey. I am claiming the verse Revelations 3:8 where it says, "See, I have set before you an open door that no one can shut." The doors are wide open and I see this every single day. I can picture a big hallway set before me! Yesterday I chatted online with one of Dr. Merwin's patients that I had met a few weeks ago at the SHHH meeting. She was happy to hear from me and answered lots of questions for me. I had asked her how she managed during that four weeks with no sound after the surgery and she said that she had gone a whole YEAR without sound so the four weeks was nothing. But, she did say that the time will go by quickly. I also talked with Karen, my online quilting friend whose daughter was implanted three years ago. She said that Allison still continues to hear new sounds every day and does beautifully on the telephone. I just cannot imagine being able to have a conversation on the phone. That has always been a source of pain and frustration for me. I also talked to my brother, Doug, online who is also hearing impaired. He has looked into getting an implant, too, but is waiting to see what happens with technology and gene therapy. Today, I got an email from my aunt Miriam and she shared with me that her brother in law, John, was implanted with a cochlear implant five years ago and is doing well. I think his wife made our wedding cake 28+ years ago. I've been practicing with wearing my aid in my left ear only and can barely hear anything. Imagine turning the sound down halfway on your TV. That is what it is like for me with just one ear. But, I will do it because there will be a trade-off. I have so much faith in God that this will work. Forgive me for writing a lot. I have many thoughts swimming around in my head and want to write them down. Maybe I'll end up using this journal and write a book about my CI dance.

Saturday, April 23, 2005

ENG Test & CT Scan

I was curious to see what the ENG test was all about so I looked it up on the Internet today. The purpose of the ENG is to determine whether or not dizziness may be due to inner ear disease. The ears are filled with warm and cold liquid or something like that. There are four main parts to the ENG. The calibration test evaluates rapid eye movements. The tracking test evaluates movement of the eyes as they follow a visual target. The positional test measures dizziness associated with positions of the head. The caloric test measures responses to warm and cold water circulated through a small, soft tube in the ear canal.

Dr. Merwin's office called me at work yesterday and left a message with June, our receptionist. I am scheduled for the ENG test and CT scan at 8:30 a.m. on Thursday, May 12th. It is all done at his office and I will spend the day there. I won't be allowed to eat or drink anything before the tests because the ENG could possibly make me nauseous. There will be time for me to go to lunch (if I feel like it!) before I meet with the Dr. to discuss the results. I'll probably go to Starbucks and relax for a while. Hopefully, we will have an answer from the insurance company by then. I'm going through a whole range of emotions - sadness and tears that Mom isn't here to share this with me, anxiety and uncertainty of the unknown, apprehension of being without sound for four weeks after surgery until I get activated, etc. etc. etc. But, I do know that this is the right thing to do. . . and the timing is right. My hearing is almost gone. Life is too short for me to go without my hearing any longer. I cannot wait to see what God has in store for me and our family! I have a lot of "cheerleaders" behind me! My family, friends, Bible Study group, coworkers, and all. God is so good.

Thursday, April 21, 2005

The First Appointment

I'm a perfect candidate! Just got home from a very long appointment and day with Dr. Merwin. My first appointment went well and I am so excited about the possibility of being able to hear better. My appointment was at 3:30 p.m. and I didn't walk out of there until after 7 p.m!!! I liked Dr. Merwin right away when he walked in the room and felt very comfortable with him. He has eyes that smile, was warm and friendly, and was easy to understand (that is so important for me!). After meeting with him I spent some time with his audiologist and went through a whole battery of hearing tests. I failed them all with flying colors (and that is a good thing)! In fact, my hearing has gotten worse since my last audiogram which was done five years ago. I only got one word right without lipreading. From what I could tell from the chart, it looks like I have a 110+ db hearing loss. Dr. Merwin says that I am an excellent candidate for a cochlear implant. The question now is which ear to do. He will leave it up to me. He says that both ears are about the same and asked me if I was right handed or left handed. When I told him that I was right handed, he said that it would probably be best if we did my right ear. That is the ear that I favor and was hoping that we could do the other ear. He said that left handers use their left ear more and right handers have a tendency to favor their right ear, which is true in my case. He said that both ears would work but I would have better sound and more results with my right ear. All that is really needed is the connection to the brain and the brain will readjust itself. (Isn't that amazing?) We discussed the implant, equipment, surgery, how long it would take, etc. (which I already knew from the research that I've been doing). I would have the latest technology available. I will have to have two more tests done (an ENG for balance and a CT scan) and we'll go from there. Dr. Merwin's nurse will schedule that and call me back tomorrow. They will also send a letter to our insurance company right away. Hopefully they will cooperate and approve everything. I hope to be implanted as early as a month from now. Depends on how I can work it around work and our family vacation. . . .more later! I met Steve at Applebee's for dinner so I didn't get home until 9:30 p.m. Today was a good day.

Tuesday, April 19, 2005

Furniture Delivery

Last week was another difficult "hearing" moment for me. We ordered new furniture in February and left specific instructions for the delivery persons to call me at work to give me plenty of time to get home to let them in the house. They called when they were an hour away. I was home in plenty of time but waited for another 45 minutes. I heard the phone ring and saw the delivery company's name on the caller id. I knew I needed to answer the phone to let them know that I was home waiting for them. But I didn't want to because I knew it would be hard to understand a stranger's voice. I picked up the phone and pressed the speaker phone button. I was able to hear them well enough to understand them calling my name but the rest of the conversation was noise to me. I kept telling them that I was Mrs. Pullins and that I was at home waiting for them. They kept hanging up on me. They called back several times. Each time I grew increasingly frustrated because I couldn't understand their message. After I hung up, I texted Brad, Marissa, and Steve from my cell phone hoping they would respond to me right away. Nothing. I called Jason (using my cell phone on the highest volume control setting) in Alabama (yes, I can hear his voice) hoping he would answer. He did! I heard him say, "Hi Mommy!" I asked him if he was busy and heard him say "No." I then told him that the furniture delivery guys were trying to call the house and didn't know what they wanted. I gave Jason their phone number and asked him to call them for me. About 10 minutes later they showed up! The guy who came to the door apologized for getting me upset but said that they had gotten lost and didn't want to worry me. They said they were able to get directions from Jason. It didn't take them long to bring our new furniture in the house but I couldn't help but feel a little frustrated.

Talking on the phone has always been very difficult for me. I have spent many years struggling with the phone and dread it when I hear the phone ring and no one is around to answer it. People have hung up on me so many times because they did not always understand that I was hearing impaired and needed a little extra time to figure out who was calling and why. I can remember crying years ago when the Culligan man hung up on me! When I was younger, I used to be able to talk on the phone a little bit, especially with my mother and close family members. Maybe it was because their voices were so familiar. I can remember losing that ability in my early 20's when we moved from Connecticut to Wisconsin. I started using a cell phone two years ago for text messaging and my family and friends LOVE being able to talk to me whenever they need to instead of through a relay service or third person! I love it, too!

Sunday, April 17, 2005

My Audiogram

Which Ear?

My main concern now is which ear should I do if I am a good candidate for a cochlear implant? I have a "good" ear and a "bad ear" according to my audiogram. If I had to choose to wear only ONE hearing aid, I favor my "bad" ear (my right ear) and seem to hear better with that. I keep asking God "which one?" I found one answer in the book I'm reading right now called Hear Again. In it the author writes:

"Once I was declared a candidate, the surgery date was set. I had to decide which ear I wanted to have implanted. Since the hearing in the implanted ear is usually destroyed, I didn't want to give up my better ear even though it heard so poorly. I preferred to use my left ear, which was virtually 'dead.' Another test, called a 'prom stim,' (My note: I'll have to find out what this test is) was performed to see if the auditory nerve in that ear could be stimulated. Much to my relief, the auditory nerve was very much alive, so I stayed with my decision to implant my worse ear."

Church was wonderful this morning. We are doing a series about "Walking with God." Pastor Jeff talked about how God's strength can shine through our weaknesses. After the service I shared my story with Jeff. I really feel that God wants to use me to share my testimony and story about this journey, but not yet. I don't really view my hearing disability as a "weakness" or "thorn in my side" because I've lived with it all my life but someone else probably would. As a young child, I used to pray for God to give me perfect hearing. I was a little disappointed when He did not answer that prayer. Later, as I grew older, my prayer to God has always been to keep what little hearing I have left (which is only 5% in both ears). He is not answering that prayer, either. But, God really does answer prayer in His own way and in His own time. I just need to trust Him and be patient. Maybe He will answer my original prayer that I prayed as a child. Maybe I will have to lose all of my hearing in one ear in order to be implanted to hear better. I'll be happy with anything that is better than what I have now whether it is 40%, 50%, or more. I do know that He has a perfect plan. I need to keeep "listening" to Him. . . . .I know that God is always at work and keeps His promises. As long as we keep believing in Him, he will move mountains and do the impossible. But, He doesn't say how long it will take. If we give God time, he will perform miracles. I have seen it and I believe it.

I told Pastor Jeff that I wasn't sure which ear to do. He said that he thought I should do my "good" ear, which is my left ear, so that I can use my other one for a back up. I think he is right. If I do go forward with this implant, it will be extremely difficult for me to go without hearing in one ear for four weeks! I did an experiment yesterday and walked around with my hearing aid in my "good" ear. I didn't like it that much. I like the hearing aid in my "bad" ear better. I will trust the Dr. and see what he says. . .

Only four more days until I see Dr. Merwin. . .I keep hearing the words in my head to a song sung by Celine Dion and Andrea Bocelli with the words: "Lead us to the place, Guide us with your grace, to a place where we'll be safe. . .but cannot remember the rest of the words. If I do get implanted with a cochlear implant, the first thing I want to hear is Marissa singing and playing the piano. She makes my heart sing.

Saturday, April 16, 2005

Q & A Session with Friend Todd

Laurie: Hello again! I'm so glad you have time to write to me! I have more questions to ask you. Do you still wear a hearing aid in the other ear?
Todd: No, I do not wear a hearing aid in my other ear. No need to. It will cause an uneven balance of hearing in both ears. One implant is perfectly good enough.
L: What brand is your implant??
T: Nucleus Esprit 22
L: Did you have trouble with dizziness after the surgery?
T: Not at all. I experienced no side effects after the surgery.
L: Were you off work very long?
T: I was out-of-work for a week. That is all it takes to recover.
L: How long did you go for "mapping" or is that a continuous process?
T: The first year after activation, about several times a year, after that, once a year.
L: Does the implant/processor bother you when you fly?
T: Not at all, really!!!! If I'm lucky, it will not go off thru the metal detector at the airport. Be prepared for that.
L: If I need a second opinion, I will certainly ask your doctors. Atlanta isn't that far (3 hours). We have a good insurance company and it looks like they will cover it. I've been told that my implant, etc. will cost up to $70,000. Our first house was $31,000!
T: Laurie, please don't hesitate to ask me anything. The more the better. We'll make plans to meet at our mountain house in May.

Thursday, April 14, 2005

SHHH Meeting

God continues to place people and circumstances in my path on this CI journey! Tuesday night was a wonderful evening with some new friends! I met Susan and her husband, Mark, at McAllister's at Turkey Creek. Another CI implant user soon joined us with his wife. We had a nice meal together. I don't remember eating the salad I ordered because I was so excited to be with these people! Jerry shared with me his CI journey and said that he was implanted by Dr. Merwin. He said that Dr. Merwin is really wonderful and has been doing implants for 21 years. I asked a lot of questions! Both Mark and Jerry's wife shared with me from a spouse's point of view that it is so amazing to see and experience first hand the joy of watching their spouses (Susan and Jerry) have their hearing restored. They say that it is "all good"!!

I drove Susan in my car to Baptist Hospital for our meeting. When I first started my car, I asked her if my music was too loud and it was. She called her husband on her cell phone and asked him to pick up some Chai Tea Lattes for us at Starbucks. She had no trouble with her phone at all! Will I be able to do that?

The SHHH meeting was great. The representative from Cochlear talked about the Cochlear company and their mission statement and did a presentation on the New Freedom Implant that just came out. Again, I asked lots of questions!!! I got to see and hold an implant in my hand and compared the processor with my hearing aid. It isn't much bigger than my aid and holds four programs! The neat thing about this processor is that it adjusts itself automatically just like a brain would when an implant user moves from one environment for another. I have the most trouble with background noises and this would help me with that.

I also met some other CI people who had their implants done by Dr. Merwin. Maggie sat next to me and her situation is very similar to mine. She was implanted four years ago and says that it changed her life for the better. She is still hearing new sounds all the time.

Jerry let me borrow a book called "Hear Again" bye Arlene Romoff. This book is about her CI journey and I've already started reading it! I'm doing as much research that I can before I see the Dr. for the first time. I'm really getting excited now!

Wednesday, April 13, 2005

Todd's CI Experience

Todd is a high school friend of mine. He recently shared his CI experience with me and I thought I would post it on my journal.

I can truly tell you that the cochlear implant I have now really changed my life. I can hear much, much clearer than I did with the old aid. It is really amazing what normal hearing people can hear and what I hear that I never heard of before.

Let's start with me how I got it done. During the year of 1992 thru 1994, I experienced a series of tinnitus (ringing in the ear) and that caused my hearing to down. Now I am completely deaf in both ears. My doctors here recommended a cochlear implant and I was a good candidate for that. I also went to the Cleveland Clinic for a second opinion and again, I was a good candidate. All I needed was to have one side done, no need to have two. I had my surgery performed as an outpatient at Northside Hospital in November 1994. All they did was drill a tiny hole in my thick skull and feed the 5" 22 channel coil through the inner cochlear and cover up. I even went home that very same day. It did not hurt that bad. Now I had to wait 30 days before activation. It takes time to heal.

On the activation day, I had to go through mapping to adjust every 22 channels of hearing comfort. Once I got my hearing back, I couldn't believe it. My wife surprised me by calling my name through the wall next door. It was emotional. Now, it has been over 11 years and it has really helped me to improve my quality of life. I now have the BTE kind (behind the ear) and the cost of the whole thing (operation, processor, test, etc.) was well over $40,000. Lucky for me, my insurance paid every penny. I've been blessed.

I cannot remember if my CI side is the good ear or the bad ear. Remember, once you have it, there is no going back to hear again. Even with the hearing aid.

Just saw your chart, I think you are an excellent candidate for CI. I hope you have good insurance to cover this costly procedure. . . Todd"

Friday, April 08, 2005

The Ambulance

Well, today I had another "God Moment" but it wasn't a good one. I was on my way home from work and was the second car sitting at a traffic light waiting for the left turn signal to turn left. When the light turned green, no one moved. Moments later I was startled when I saw an ambulance with the sirens going and the lights on right next to me in the median! I used to be able to see ambulances coming before I heard them but today I didn't. I didn't hear it until it was right on top of me and it was an unsettling feeling. What if I had been the first car at the light and started to turn left when the green arrow came on? I would have started to make the turn and it would have hit me! My guardian angel was truly watching over me today. I know this is another confirmation that I am not hearing as well as I used to. As each day goes by, I receive a new message or confirmation that this is something that I need to be doing! I can't explain it. How wonderful it will be to be able to really "hear" real sounds. It will be a long process but it will be worth it!

We had our good friends, Dawn and Bill over for dinner last night. We met them in Chillicothe 15 years ago and they now live in Knoxville. They were the ones who took care of our kids for eight days while I was with Mom during her last days 13 years ago. Bill was the one who sat down with our children to tell them that their beloved grandmother had died. They are very dear friends to us and we are close. We used Mom's china in her honor last night since it was her "anniversary". How I still miss her. . .If she was still here today, she would be my biggest cheerleader on this new journey. But, God is good. "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." (Romans 8:28)

Thursday, April 07, 2005

Confirmation from God

Wow. I am in awe of how God has a perfect plan for our lives. The more I listen for Him, the more I "hear" Him. Today, I heard him loud and clear and am more sure that this journey is going to work out for me according to His plan. This past Tuesday night towards the end of Bible Study, our leader, Tina, announced that she would not be able to lead the session next week because she will be out of town. Tina asked for a volunteer to come in and lead the group for next week to push the button for the video that we were watching and to lead the Bible Study in her place. Part me me wanted to volunteer (how hard would that be to push and button and ask the group a few questions?) but I heard a still small voice telling me that the group needed a break. I kept my hand down. No one volunteered so Tina suggested that we pray about it. So we did. After the prayer, we all looked up and Tina smiled and said, "Well?" The room was silent and we were all looking at each other (there were about ten of us). I slowly raised my hand and told the group that I felt that God was telling us that we needed a break. Tina smiled and said she felt the same way but didn't want to be the one to say it. So, we agreed to meet in two weeks.

TODAY, Susan (the gal I met last week who had the cochlear implant done two months ago) came in to see me at work! I was so surprised and thrilled to see her! She was on her way to meet John (our hearing aid man) and thought she would stop by to drop off some information for me. I wanted the other girls to meet her so I brought her back in the Accounting department and introduced her to Kim, Candice, & Paula. She showed them her CI (implant) and shared a little bit of her story with them. They were so amazed and would never have realized that she had had a hearing loss. She came back to my desk and told me that there was a monthly SHHH (Self Help for Hard of Hearing) meeting on Tuesday night that would be very helpful for me. She said, "I know you have Bible Study that night but the people from Cochlear who make the implants will be there." I looked at her and said, "Susan, I DON'T have Bible Study next week! We are taking the week off!" She also said that there will be other people there who have had the implant done by the Dr. that I'm going to and I will be able to meet them and ask them questions! I was just bursting with joy inside and knew that this was a BIG GOD MOMENT! Wow! So, I will meet Susan and her husband and some other members of the SHHH group at McAllister's on Tuesday night at 5:30 p.m. before the meeting! So, this is why God was planning for us to take a break from Bible Study next week! As each day passes, the more I am sure that this is meant to be. Everything is falling into place. . .ten years ago I wasn't ready and the time was not right then.

Tuesday, April 05, 2005

The Mower

Today is an absolutely gorgeous day! During my lunch hour I went to the park so that I could just take in the sunshine and warm weather while I did some reading. Ever since I started this journey, I've been trying to be more aware of the sounds that I hear versus the ones I may be missing. I "missed" a BIG one today. I was concentrating so hard on my book that I jumped when a city worker drove right in front of me on the sidewalk full blast with an industrial riding mower! I should have heard him coming but I didn't. . .

I know that I've trained my brain to "hear" sounds. For example, when I see Chester meowing at me, I think I "hear" her meowing (yes, Chester is a she!) because I've somehow made up a "meow" in my head. I know I do this with many other things. What will it be like if this cochlear implant works for me and I can hear "real sounds?"

Last night I met my dear friend, Dawn, at Starbucks in Turkey Creek. We go way back and have been friends for more than 15 years. She grew up understanding the deaf community because her mother signed for the deaf in church and she always had to sit in the deaf section even though there was nothing wrong with her hearing. She is probably one of the few friends that I can connect with (outside of my family) that REALLY understands me and my disability. She was so excited for me when I shared with her that I was going to be evaluated for a cochlear implant! She said she would drop whatever she was doing to be there for me when I go through this process! She was so funny and said I might even end up with a roomful of people when I get "turned on!" (When and if that happens. . .)

I tried the Chai Tea Latte for the first time at Starbucks. . .it is my new favorite drink!

Sunday, April 03, 2005

Email from Allison

Today's post is an email that I received from another hearing impaired person who had a CI done several years ago. I met her mother, Karen, through an online quilt group that I belong to. I met her face to face for the first time when she and her husband travelled to Tennessee from California a few years ago. She realized right away that I was hearing impaired and shared with me that she had twin daughters who also had hearing losses similar to mine. We have continued to stay in touch all these years. It has been nice to "connect" with another person who understands the trials and tribulations of the silent world. I knew that one of her daughters had had a CI done recently so I contacted Karen again to ask her some questions about it. She gave me Allison's email address because she felt that Allison would be able to answer my questions better than she could. So, the following is Allison's response to my first email. I thought I would share!

Hi Laurie,

My mom gave me the heads up to keep an eye out for your name and that you wanted to learn more about my CI. OK. Here we go.

I had my surgery 2 1/2 years ago on my right ear, because at that time I was experiencing horrible tinnitus (that ringing in the ear) and the doctor said that there was a 70% chance of it going away with surgery. So, I decided to go ahead with it. My surgery was no more than 2 hours. Hook up was 3 1/2 weeks later and that's a whole another story.

The sounds, when it was first turned on, triggered that,"ohh my god, what have I done!" feeling. Fortunately, my audiologist was so sweet and sensitive and told me to hang in there. I mean these sounds were so high pitched that they sounded like Cinderella's mice sucking helium! Within a few days I noticed the sounds were softening up. This was continuous and I think about 3 months after hook up is when I was really beginning to understand words without lipreading. And my audiologist told me to go ahead and use the hearing aid on the other ear.

It has been said that after getting the CI people usually don't like to wear the hearing aid but I do... I think of it as a bridge to what I heard before and then understand what it sounds like with the CI. The sounds are very different. The hearing aid side is very muffled as compared to the CI. But it doesn't bother me because the CI is really doing all the work. I can localize sounds better with the hearing aid on. Also, my audiologist also said that it's a good idea to keep that auditory nerve stimulated regardless of what benefit it is getting, in the event that years down the road I want to try out the newest technology. I will remain a good candidate.

I love my CI! The only thing that I don't like about my BTE N24 is that it is a "Battery Guzzler!" Just as an SUV is a "gas guzzler!" You know it requires three 675 batteries per change. So I buy the batteries by the cartons!

The one thing that I emphasize strongly is to have patience if you do decide to go and get a CI. And I mean it. There were times when I cried and thought I had made a mistake and even had a few venting outbursts due to the frustration of not understanding what I was hearing. Breathe often if you get frustrated and even turn it off for a little while. When I got to that point of auditory overload, I had to tell myself to "breathe..... give myself a break...... this is new...... change can be hard.....etc... I even meditated a little and that helped tremendously!

I will have had my CI for three years on August 5. And I don't regret it one bit... I'm still hearing new things and loving it!!! It's more about fine details of sounds and sounds that are far away that I'm getting into now. It's pretty cool.

Please, by all means, if you have any more questions please ask away, ok?! Good luck on your journey! Allison

Friday, April 01, 2005

Facing the Unknown

When I read my daily devotion this morning, there was a quote by Corrie Ten Boom waiting for me. It said, "Never be afraid to trust an unknown future to an all-knowing God." How appropriate this is for my "dance!" God is really asking me to trust Him with some major "life" decisions this year. And he isn't doing it with just one! But, I do know that He will not give me more than I can handle. So, if things are meant to be, everything will fall into place. Today I called Dr. Merwin's office to make my appointment and will have my evaluation for a cochlear implant on April 21st! Every time I think about the possibilities of being able to hear "real" sound, I am overwhelmed with emotion and have to hold back the tears. But, I am also trying not to get my hopes up too quickly. God is good, all the time. And all the time, God is good. Today has been a good day.