Memory Keeper's Daughter by Kim Edwards
" Secrets that can rip a family apart "
Sunday, June 1, 2008
Tuesday, April 29, 2008
The Icon
I went to visit a friend, her husband and 4 children during the last weekend in April. Ive known my friend since our sophomore year in college. It is always fun to remissness about the good old college days. We did get into some situations that could have ended very badly.
Our capers tended to be at Spanky's Cafe. This was a little local bar not quite a block from Saint Francis College. I will tell you that they could make the best Alabama Slammers. Perhaps it was the age and time and through age we grow out of certain tastes.
Anyway it was always nice to go to Spanky's Cafe because it was like going back in time... it never changed. Well, during my visit I was told Spanky's had closed its doors. i did not receive any explanation on that it is no longer. An icon during my youth gone.
Our capers tended to be at Spanky's Cafe. This was a little local bar not quite a block from Saint Francis College. I will tell you that they could make the best Alabama Slammers. Perhaps it was the age and time and through age we grow out of certain tastes.
Anyway it was always nice to go to Spanky's Cafe because it was like going back in time... it never changed. Well, during my visit I was told Spanky's had closed its doors. i did not receive any explanation on that it is no longer. An icon during my youth gone.
Sunday, April 6, 2008
CI - connected
will tell you how it all began with my hearing loss I mean. When I was 0 - 24 1/2 I had a mild hearing loss infact most people couldnt tell expecially since i had good speech. It was always a self hate thing I was extremely defensive over it and that followed me for the rest of my life. ACtually, if i had utilzed the resources that was out there I would have been better off. Expecially at Saint Francis. With my other health drama it just added to the non acceptance.
At 25 ( student teaching year) I had a sudden loss which became ( 40 decibles loss which made it moderate)... still i was able to hide it pretty good, but i was missing a lot expecially in teaching.
At 35 it was 2 days before Halloween, 2005 on a Friday at 2:00 i was at work when it happend... there was a tremendous amound of tentinites (sp) and total hearing loss. my supervisor drove me 1/2 hour to my ENT there i underwent a hearing test which came back nothing. I was put on preizone treatment. If u ever had predizone well let me tell you ive had more than my share over th years. Predizone makes you gain weight and cause hair to grow where most women wouldnt want it to grow. After a month of Predizone, the hearing only came back 32% which puts me in the severe ramge/// it makes telephone much harder. right now i dont have a telephone at home. I do have a captel at work inwhich I can call an operator they dial a number and type what the speaker is saying.. Alot of people do not like its rather slow and they can hear beeps... I did have one client's mother request another caseworker because they felt they couldnt use the phone. Its been hard. I actually had a client's mom request another caseworker because she didnt want to deal with the telephone. Its rough.
I will tell you a little about John Hopkins. On Feb 3rd, I had my consultation with my Audi, Steve Bewdish. He is really nice. Steve at the consultation reassured me on a lot of my questions for example the side affects possiblities that I read. For Example, Meneginties (sp sorry), allergic reactions, body can reject the implaint and facial spasms.
I found out the possible side effects are about 1%... and im not vain but the one i was worried about was the facial spasms.
Once I did the consultation; Things I needed to do were the following: I did the audiological assessment; I had an MRI test down but JH needs the original films. So I have to see if i can get them. If JH approves then i dont have to ahve a ct done; however, i have a feeling they want to see my left ear and i beleive the mri only did the rigth. ( the left ear is most likely where the implant will go).
The Bonic Ear Assoc. Steve showed me the 3 different devices to choose from and i seem to favor the rechargable one.
Through an email from Steve i was told Given my history of "dizzyness" that we discussed at my last appt, he is recommending Dr Charles Dellasantina who has a dual interest in both Cochlear Implantation and vestibular issues. someone will be in touch soon.
Isnt Dellasantina such a dreamy name... You remember my dizzyness from school dont u mosty at Saint Francis. I never was quite sure you beleived me when i wasn going through that or maybe it was that u didnt know how to help. No one really does its all caused by stress.
Steve also gave me alot of people with CLs to talk to over the net. I still want to meet someone face to face who has one... do you know of any?
My first stumbling block the mri scan that was done last thankgiving before john hopkins... were not acceptable because they did not show good cuts/angles. Therefore, I am scheduled locally to do a catscan on February 28 at 7:30am.
In another appointment with meeting with Steve (audi)
I saw my audi, Steve Bowdish first. He took me to a hearing booth where I met Tiffany who did the audi test of both ears. They put a hearing aid in my left which felt strange because i never had anything on that side before. They were suprised how much I was able to pick up (on my right ear) because of the amount of lose I had. I didnt do too bad with hearing noise after awhile it all sounds like the tentnities anyway. I was able to hear speach but not distinguish the words.
Two things you may hear about CL. Mapping which is is the process by which you and the audiologist figure out how to adjust the current and volune on each electrod of the implant so that sounds (speech and environmental) is the most natural for you. 2/ and prom stim test ( talk about that later).
Im looking into an New Bionics (manufacturer) auria processor and 120 stradegies which is the newest cl out there right now and the batters can last up to 7 - 12 hours at a time. One of the concerns i had was the processor would be on my ear and its actually 2 times bigger than my hearing aid.. my ears are very small and well i wasnt sure if it would even be about to hold a processor. The other options is to have the processor hook on to my belt, but i cant see that either.
Later met Dr Charles Della Santa.. he isnt quite as dreamy as his name but he did have a nice smile... He is aquanted with my ENTs in Hegerstown. Anyway, He looked at my scans as well as showed me my scans and someone else's scan to compare. I never new that but attach the coachlea are vessles that control balance. Well, my scans showed that I did not have these vessles. All these years not knowing what caused the dizzy spells and now i know... I was missing organs that I didnt know I was missing.
We did tests for the dizziness .. he would shake my head literally and look in my eyes. He would tell me to look at his nose while he was shaking the head. I wore funny goggles im not sure why. He would ask me to stand in certain positions and promised he wouldnt let me fall. Then he wanted to make another appointment to have hot and cold water in my ears. That appointment was at 3.
I had my appointment at John Hopkins yesturday, July 25th. The appointment was at 8am so we left at 4 plenty of time to eat breakfast before the appointment. I saw both my surgeon (charles della santina) and my audi (steve bowditch).
I was to have an electrode placement and promontory stimulation testing. This test is a preoperative assessment of the auditory pathway before cochlear implantation. . This method can prove the intactness of the auditory pathway and help the surgeon in decision making before cochlear implantation.
Since i still have a little bit of hearing left in my right ear they were thinking of implanting the left ear (which i never never never had any hearing in that ear). I always was able to improvise for the loss.
I entered an examining room whre they put a drop of Anesthesia on my ear drum then inserted a needle in my ear. Steve then proceded in doing a hearing test. The only thing i was able to make out was pulses and took a very long time to even get those.
At the end, they thought that the right ear may be the better ear to implant. They do want to do another mri to look at the valves in the left ear before saying ok the left ear is not going to work.
We waited and waited for about 3 hours and still no mri and i was alloud to do it in Chambersburg so i thought thats fine there was no gaurentee that i would get into to do the mri... i didn feel like waiting for 4 or 5 hours and still no mri.
Yes, the right ear would be a good choice because it is already known that the cholea works fine in that ear. If i do get the cl in the right ear the first month or so I will not hear anything. Presently, I can hear some environmental noises without the hearing aid. I can hear my alarm clock and in most cases my microwave.
So I will make the mri appointment, send the films to JH and hopfully this time i wont have to wait 3 months for the next appointment.
I can understand the doctors they want to implant a sure thing not a possible thing... i dont know if i would ever do a bilateral cl. What i dont want is just to hear noise... that would drive me nuts. The most annoying noise i would not mind missing are birds... please.... end of discussion. There is no way to try to see if the left ear would be a possibilty... why? the cost, time, scaring... the emotional trama and oh im already thinking im going to have a goofy haircut for a while.
I got the mri done later in the month and it came back as the vains in my left ear is much too thin to even think about a CL. That leaves my right ear which is scary because i can still hear things like my alarm clock, microwave... voices but not always the entire conversation... for about a month after the cl I will be totally deaf because they will wait for the surgery to heal before activating it ( begin mapping).
At 25 ( student teaching year) I had a sudden loss which became ( 40 decibles loss which made it moderate)... still i was able to hide it pretty good, but i was missing a lot expecially in teaching.
At 35 it was 2 days before Halloween, 2005 on a Friday at 2:00 i was at work when it happend... there was a tremendous amound of tentinites (sp) and total hearing loss. my supervisor drove me 1/2 hour to my ENT there i underwent a hearing test which came back nothing. I was put on preizone treatment. If u ever had predizone well let me tell you ive had more than my share over th years. Predizone makes you gain weight and cause hair to grow where most women wouldnt want it to grow. After a month of Predizone, the hearing only came back 32% which puts me in the severe ramge/// it makes telephone much harder. right now i dont have a telephone at home. I do have a captel at work inwhich I can call an operator they dial a number and type what the speaker is saying.. Alot of people do not like its rather slow and they can hear beeps... I did have one client's mother request another caseworker because they felt they couldnt use the phone. Its been hard. I actually had a client's mom request another caseworker because she didnt want to deal with the telephone. Its rough.
I will tell you a little about John Hopkins. On Feb 3rd, I had my consultation with my Audi, Steve Bewdish. He is really nice. Steve at the consultation reassured me on a lot of my questions for example the side affects possiblities that I read. For Example, Meneginties (sp sorry), allergic reactions, body can reject the implaint and facial spasms.
I found out the possible side effects are about 1%... and im not vain but the one i was worried about was the facial spasms.
Once I did the consultation; Things I needed to do were the following: I did the audiological assessment; I had an MRI test down but JH needs the original films. So I have to see if i can get them. If JH approves then i dont have to ahve a ct done; however, i have a feeling they want to see my left ear and i beleive the mri only did the rigth. ( the left ear is most likely where the implant will go).
The Bonic Ear Assoc. Steve showed me the 3 different devices to choose from and i seem to favor the rechargable one.
Through an email from Steve i was told Given my history of "dizzyness" that we discussed at my last appt, he is recommending Dr Charles Dellasantina who has a dual interest in both Cochlear Implantation and vestibular issues. someone will be in touch soon.
Isnt Dellasantina such a dreamy name... You remember my dizzyness from school dont u mosty at Saint Francis. I never was quite sure you beleived me when i wasn going through that or maybe it was that u didnt know how to help. No one really does its all caused by stress.
Steve also gave me alot of people with CLs to talk to over the net. I still want to meet someone face to face who has one... do you know of any?
My first stumbling block the mri scan that was done last thankgiving before john hopkins... were not acceptable because they did not show good cuts/angles. Therefore, I am scheduled locally to do a catscan on February 28 at 7:30am.
In another appointment with meeting with Steve (audi)
I saw my audi, Steve Bowdish first. He took me to a hearing booth where I met Tiffany who did the audi test of both ears. They put a hearing aid in my left which felt strange because i never had anything on that side before. They were suprised how much I was able to pick up (on my right ear) because of the amount of lose I had. I didnt do too bad with hearing noise after awhile it all sounds like the tentnities anyway. I was able to hear speach but not distinguish the words.
Two things you may hear about CL. Mapping which is is the process by which you and the audiologist figure out how to adjust the current and volune on each electrod of the implant so that sounds (speech and environmental) is the most natural for you. 2/ and prom stim test ( talk about that later).
Im looking into an New Bionics (manufacturer) auria processor and 120 stradegies which is the newest cl out there right now and the batters can last up to 7 - 12 hours at a time. One of the concerns i had was the processor would be on my ear and its actually 2 times bigger than my hearing aid.. my ears are very small and well i wasnt sure if it would even be about to hold a processor. The other options is to have the processor hook on to my belt, but i cant see that either.
Later met Dr Charles Della Santa.. he isnt quite as dreamy as his name but he did have a nice smile... He is aquanted with my ENTs in Hegerstown. Anyway, He looked at my scans as well as showed me my scans and someone else's scan to compare. I never new that but attach the coachlea are vessles that control balance. Well, my scans showed that I did not have these vessles. All these years not knowing what caused the dizzy spells and now i know... I was missing organs that I didnt know I was missing.
We did tests for the dizziness .. he would shake my head literally and look in my eyes. He would tell me to look at his nose while he was shaking the head. I wore funny goggles im not sure why. He would ask me to stand in certain positions and promised he wouldnt let me fall. Then he wanted to make another appointment to have hot and cold water in my ears. That appointment was at 3.
I had my appointment at John Hopkins yesturday, July 25th. The appointment was at 8am so we left at 4 plenty of time to eat breakfast before the appointment. I saw both my surgeon (charles della santina) and my audi (steve bowditch).
I was to have an electrode placement and promontory stimulation testing. This test is a preoperative assessment of the auditory pathway before cochlear implantation. . This method can prove the intactness of the auditory pathway and help the surgeon in decision making before cochlear implantation.
Since i still have a little bit of hearing left in my right ear they were thinking of implanting the left ear (which i never never never had any hearing in that ear). I always was able to improvise for the loss.
I entered an examining room whre they put a drop of Anesthesia on my ear drum then inserted a needle in my ear. Steve then proceded in doing a hearing test. The only thing i was able to make out was pulses and took a very long time to even get those.
At the end, they thought that the right ear may be the better ear to implant. They do want to do another mri to look at the valves in the left ear before saying ok the left ear is not going to work.
We waited and waited for about 3 hours and still no mri and i was alloud to do it in Chambersburg so i thought thats fine there was no gaurentee that i would get into to do the mri... i didn feel like waiting for 4 or 5 hours and still no mri.
Yes, the right ear would be a good choice because it is already known that the cholea works fine in that ear. If i do get the cl in the right ear the first month or so I will not hear anything. Presently, I can hear some environmental noises without the hearing aid. I can hear my alarm clock and in most cases my microwave.
So I will make the mri appointment, send the films to JH and hopfully this time i wont have to wait 3 months for the next appointment.
I can understand the doctors they want to implant a sure thing not a possible thing... i dont know if i would ever do a bilateral cl. What i dont want is just to hear noise... that would drive me nuts. The most annoying noise i would not mind missing are birds... please.... end of discussion. There is no way to try to see if the left ear would be a possibilty... why? the cost, time, scaring... the emotional trama and oh im already thinking im going to have a goofy haircut for a while.
I got the mri done later in the month and it came back as the vains in my left ear is much too thin to even think about a CL. That leaves my right ear which is scary because i can still hear things like my alarm clock, microwave... voices but not always the entire conversation... for about a month after the cl I will be totally deaf because they will wait for the surgery to heal before activating it ( begin mapping).
CI - connected
Deaf Who ME?
I never thought of myself as being a deaf person. As early as I can remember, I identified myself as hearing impaired. Instead of embracing the fact that this is who I am I fought it. I didn’t want to be identified as someone who was a little less than what I envisioned as being “ Perfect “. I wasn’t until I was grown that I learned that God doesn’t make mistakes and I was made for a reason.
I am getting a little ahead of myself … I will tell you how it all began with my hearing loss I mean. When I was 0 - 24 ½, I had a mild hearing loss in fact most people couldn’t tell especially since I had good speech. I did wear a hearing aid. In some instances depending on the loudness I didn’t need a hearing aid. It was always a self hate thing I was extremely defensive over it and that followed me for the rest of my life.
While I was in school I had a hearing therapist and a speech therapist. The hearing therapist and I would meet behind the nurse’s office maybe every week. She would outline my chapters for me, but I never read them. I didn’t know what the purpose of it all was and why did I need a therapist. My grades certainty did not reflect that I had assistance. I had asked if I could go a year without a therapist, but that never came about.
My speech therapist during my teen years was a kindly church gentleman who I only saw as a consultation. I still felt embarrassed in needing to see him and not knowing why it was necessary.
Looking back I may have been cutting off my nose in spite of my face. If I had utilized the resources that was out there I would have been better off. I didn’t realize then how strong I really was and I really am.
I had very few social contacts in both High School and College. I was very quiet and slow to trust anyone. Once people wanted to get to know me then they realized I’m not so quiet.
At 25 ( student teaching year) I had a sudden loss which became ( 40 decibels loss which made it moderate)... still I was able to hide it pretty good, but I was missing a lot especially in teaching. This should have been a clue that maybe teaching in a classroom setting wasn’t the best for me. I always felt that I was over looked and that came to self pity. Looking back I stopped growing – it was a bigger mistake to move back home I ended up resenting it for years.
The additional hearing loss did leave a stigma on me. People I felt related to me differently or that’s how I perceived it. When people spoke ( speak) to me and I misinterpret or totally miss it can be perceived as being “ not too bright “ or sometimes I would hear and other times I would not can be perceived as I was caught in a lie. I eventually stepped further into my quietness and at times almost became invisible.
My frequent colds and allergies made my hearing fluctuate on and off. The ear wax was endless and I was going every 3 months just to get it removed. My ears would become clogged after washing my hair and swimming it would take hours for me to even be able to hear again.
Eventually, I finally moved due to a job 1 ½ away. Its something that should have happened years ago. It was very difficult I was home sick often and used the phone all the time. My place of employment was trying to be supportive to my hearing and once again I began to be defensive and found it to be very intrusive. They would give me pamphlets on deafness; or try to get a new telephone for me ( at that time I didn’t need one ). I was not the one requesting these accommodations and I did not want them. I also got the feeling I was not given the more difficult cases due to my hearing. I was never asked to be on the consolidated team even though my supervisor would ask everyone else. The favoritism she displayed hurts and through time I quickly lost respect. Another assumption is that I needed all this “ help “ but no one asked me what type of things I may or may not have needed.
It also amazes me that when people learn that I have a hearing loss there is an assumption that I become the expert on deaf people. Another assumption is I know sign language and I know it well… which I do not. I didn’t learn to sign until College and since I do not practice I have lost a lot of the skill.
At 35 it was 2 days before Halloween, 2005 on a Friday at 2:00 I was at work when it happened... there was a tremendous amount of ringing in the ears. It felt as if I had my ear up against a running dishwasher. Then I had total hearing loss.
My supervisor drove me 1/2 hour to my ENT there I underwent a hearing test which came back nothing. I was put on predizone treatment. If u ever had predizone well let me tell you I’ve had more than my share over the last 4 years. Predizone makes you gain weight and cause hair to grow where most women wouldn’t want it to grow. After a month of Predizone, the hearing only came back 32% which puts me in the severe range it makes telephone much harder. right now I dont have a telephone at home. I do have a captel at work in which I can call an operator they dial a number and type what the speaker is saying.. Alot of people do not like my phone system its rather slow and they can hear beeps... I did have one client's mother request another caseworker because they felt they couldnt use the phone. It’s been hard. I actually had a client's mom request another caseworker because she didnt want to deal with the telephone. It’s rough.
My hearing aid was no longer beneficial. The next step would be looking into a cochlear implant. I had reservations even when all those people with “okay hearing “kept encouraging me to get the procedure done. Those people who didn’t understand what or why I was having a problem with this decision. I was frustrated, angry, confused and alone instead of understanding some people gave closed doors, and calling me mean spirited.
After the procedure, I had received an email from a client’s sister which stated something like she thanked me for sharing some of the experience ( hearing ) and she stated something about she was sure I handled it with “ grace and finess “ I very much like that phrase and wish I could say that I did handle it with grace and finess. Perhaps I handled it the best way that I knew how. I am very much grateful for my mentors that I had met along the way.
Again I am jumping ahead of myself ….
I will tell you a little about John Hopkins. The campus stretches over several blocks. I received my first surgery at John Hopkins at just 3 months of age. Oh my how time flies. I saw all sorts of people of different: ages; genders; races: ethics. Patience came in on their feet or wheelchair or hospital bed.
The elevator took us to the 6th floor to the Listening Center. Im just a number and sit waiting until they call it.
On Feb 3rd, I had my consultation with my Audiologist, Steve Bowdish. He is really nice. Steve at the consultation reassured me on a lot of my questions for example the side affects possibilities that I read. For Example, Meneginties (sp sorry), allergic reactions, body can reject the implant and facial spasms.
I found out the possible side effects are about 1%... and Im not vain but the one I was worried about was the facial spasms.
First of all what makes me a good candidate. Idealy, I have a Sensorineural hearing loss in which the auditory never fibers are still intact, the age in which I lost my hearing plays the factor to how well the implant will perform.
Who determined if I would be a candidate? I of course played a big part of the decision, the audiologist; the otologist there are other parts of the team that can play the role too.
Once I did the consultation; Things I needed to do were the following: I did the audiological assessment; I had an MRI test down but JH needs the original films. So I had the films transferred to John Hopkins. . If JH approves then I don’t have to have a ct done; however, I have a feeling they want to see my left ear and I believe the MRI only did the rigth. ( the left ear is most likely where the implant will go).
The Bonic Ear Assoc. Steve showed me the 3 different devices to choose from and I seem to favor the rechargeable one. The websites on cochlear implants have been very helpful in my decision. http://www.umm.edu/otolaryngology/cochlear.htm
Through an email from Steve I was told given my history of "dizzyness" that we discussed at my last appt, he is recommending my otologist to be Dr Charles Dellasantina who has a dual interest in both Cochlear Implantation and vestibular issues. Someone will be in touch soon.
Isnt Dellasantina such a dreamy name!
My dizzy spells…. Ive had them ever since I was a baby I would get to the point I would be down on the floor getting sick and lasting for a couple hours until I feel asleep due to exhaustion. I had several unkind teachers ( Bedford School District Pennsylvania incase anyone is interested ) who because of their ignorance thought I was ‘faking it ‘. It all ended up being due to stress.
My first stumbling block the mri scan that was done last Thankgiving before John Hopkins... were not acceptable because they did not show good cuts/angles. Therefore, I am scheduled locally to do a catscan on February 28 at 7:30am.
In another appointment with meeting with Steve (audi)
I saw my audi, Steve Bowdish first. He took me to a hearing booth where I met Tiffany who did the audi test of both ears. They put a hearing aid in my left which felt strange because i never had anything on that side before. They were surprised how much I was able to pick up (on my right ear) because of the amount of lose I had. I didnt do too bad with hearing noise after awhile it all sounds like the tentnities anyway. I was able to hear speech but not distinguish the words.
Two things you may hear about CL. Mapping which is the process by which you and the audiologist figure out how to adjust the current and volume on each electrod of the implant so that sounds (speech and environmental) is the most natural for you. 2/ and prom stim test ( talk about that later).
Im looking into an New Bionics (manufacturer) auria processor and 120 stradegies which is the newest ci out there right now and the batters can last up to 7 - 12 hours at a time. One of the concerns I had was the processor would be on my ear and its actually 2 times bigger than my hearing aid.. My ears are very small and well I wasnt sure if it would even be about to hold a processor. The other options is to have the processor hook on to my belt, but i cant see that either.
Later I met Dr Charles Della Santa.. he isnt quite as dreamy as his name but he did have a nice smile... He is acquainted with my ENTs (ears nose and throat ) in Hegerstown. Anyway, He looked at my scans as well as showed me my scans and someone else's scan to compare. I never new that but attach the coachlea is vessles that control balance. Well, my scans showed that I did not have these vessles. All these years not knowing what caused the dizzy spells and now I know... I was missing organs that I didnt know I was missing.
We did tests for the dizziness .. he would shake my head literally and look in my eyes. He would tell me to look at his nose while he was shaking the head. I wore funny goggles im not sure why. He would ask me to stand in certain positions and promised he wouldnt let me fall. Then he wanted to make another appointment to have hot and cold water in my ears. That appointment was at 3.
I had my appointment at John Hopkins yesterday, July 25th. The appointment was at 8am so we left at 4 plenty of time to eat breakfast before the appointment. I saw both my surgeon (charles della santina) and my audi (steve bowditch).
I was to have an electrode placement and promontory stimulation testing. This test is a preoperative assessment of the auditory pathway before cochlear implantation. . This method can prove the intactness of the auditory pathway and help the surgeon in decision making before cochlear implantation.
Since I still have a little bit of hearing left in my right ear they were thinking of implanting the left ear (which i never never never had any hearing in that ear). I always was able to improvise for the loss.
I entered an examining room where they put a drop of anesthesia on my ear drum then inserted a needle in my ear. Steve then proceeded in doing a hearing test. The only thing I was able to make out was pulses and took a very long time to even get those.
At the end, they thought that the right ear may be the better ear to implant. They do want to do another mri to look at the valves in the left ear before saying ok the left ear is not going to work.
We waited and waited for about 3 hours and still no mri and i was aloud to do it in Chambersburg so I thought that’s fine there was no guarantee that I would get into to do the mri... I didn’t feel like waiting for 4 or 5 hours and still no mri.
Yes, the right ear would be a good choice because it is already known that the cholea works fine in that ear. If I do get the cl in the right ear the first month or so I will not hear anything. Presently, I can hear some environmental noises without the hearing aid. I can hear my alarm clock and in most cases my microwave.
So I will make the mri appointment, send the films to JH and hopefully this time I wont have to wait 3 months for the next appointment.
I can understand the doctors they want to implant a sure thing not a possible thing... i dont know if I would ever do a bilateral cl. What i dont want is just to hear noise... that would drive me nuts. The most annoying noise i would not mind missing are birds... please.... end of discussion. There is no way to try to see if the left ear would be a possibilty... why? the cost, time, scaring... the emotional trama and oh im already thinking im going to have a goofy haircut for a while.
I got the mri done later in the month and it came back as the vains in my left ear is much too thin to even think about a CL. That leaves my right ear which is scary because i can still hear things like my alarm clock, microwave... voices but not always the entire conversation... for about a month after the cl I will be totally deaf because they will wait for the surgery to heal before activating it ( begin mapping).
I never thought of myself as being a deaf person. As early as I can remember, I identified myself as hearing impaired. Instead of embracing the fact that this is who I am I fought it. I didn’t want to be identified as someone who was a little less than what I envisioned as being “ Perfect “. I wasn’t until I was grown that I learned that God doesn’t make mistakes and I was made for a reason.
I am getting a little ahead of myself … I will tell you how it all began with my hearing loss I mean. When I was 0 - 24 ½, I had a mild hearing loss in fact most people couldn’t tell especially since I had good speech. I did wear a hearing aid. In some instances depending on the loudness I didn’t need a hearing aid. It was always a self hate thing I was extremely defensive over it and that followed me for the rest of my life.
While I was in school I had a hearing therapist and a speech therapist. The hearing therapist and I would meet behind the nurse’s office maybe every week. She would outline my chapters for me, but I never read them. I didn’t know what the purpose of it all was and why did I need a therapist. My grades certainty did not reflect that I had assistance. I had asked if I could go a year without a therapist, but that never came about.
My speech therapist during my teen years was a kindly church gentleman who I only saw as a consultation. I still felt embarrassed in needing to see him and not knowing why it was necessary.
Looking back I may have been cutting off my nose in spite of my face. If I had utilized the resources that was out there I would have been better off. I didn’t realize then how strong I really was and I really am.
I had very few social contacts in both High School and College. I was very quiet and slow to trust anyone. Once people wanted to get to know me then they realized I’m not so quiet.
At 25 ( student teaching year) I had a sudden loss which became ( 40 decibels loss which made it moderate)... still I was able to hide it pretty good, but I was missing a lot especially in teaching. This should have been a clue that maybe teaching in a classroom setting wasn’t the best for me. I always felt that I was over looked and that came to self pity. Looking back I stopped growing – it was a bigger mistake to move back home I ended up resenting it for years.
The additional hearing loss did leave a stigma on me. People I felt related to me differently or that’s how I perceived it. When people spoke ( speak) to me and I misinterpret or totally miss it can be perceived as being “ not too bright “ or sometimes I would hear and other times I would not can be perceived as I was caught in a lie. I eventually stepped further into my quietness and at times almost became invisible.
My frequent colds and allergies made my hearing fluctuate on and off. The ear wax was endless and I was going every 3 months just to get it removed. My ears would become clogged after washing my hair and swimming it would take hours for me to even be able to hear again.
Eventually, I finally moved due to a job 1 ½ away. Its something that should have happened years ago. It was very difficult I was home sick often and used the phone all the time. My place of employment was trying to be supportive to my hearing and once again I began to be defensive and found it to be very intrusive. They would give me pamphlets on deafness; or try to get a new telephone for me ( at that time I didn’t need one ). I was not the one requesting these accommodations and I did not want them. I also got the feeling I was not given the more difficult cases due to my hearing. I was never asked to be on the consolidated team even though my supervisor would ask everyone else. The favoritism she displayed hurts and through time I quickly lost respect. Another assumption is that I needed all this “ help “ but no one asked me what type of things I may or may not have needed.
It also amazes me that when people learn that I have a hearing loss there is an assumption that I become the expert on deaf people. Another assumption is I know sign language and I know it well… which I do not. I didn’t learn to sign until College and since I do not practice I have lost a lot of the skill.
At 35 it was 2 days before Halloween, 2005 on a Friday at 2:00 I was at work when it happened... there was a tremendous amount of ringing in the ears. It felt as if I had my ear up against a running dishwasher. Then I had total hearing loss.
My supervisor drove me 1/2 hour to my ENT there I underwent a hearing test which came back nothing. I was put on predizone treatment. If u ever had predizone well let me tell you I’ve had more than my share over the last 4 years. Predizone makes you gain weight and cause hair to grow where most women wouldn’t want it to grow. After a month of Predizone, the hearing only came back 32% which puts me in the severe range it makes telephone much harder. right now I dont have a telephone at home. I do have a captel at work in which I can call an operator they dial a number and type what the speaker is saying.. Alot of people do not like my phone system its rather slow and they can hear beeps... I did have one client's mother request another caseworker because they felt they couldnt use the phone. It’s been hard. I actually had a client's mom request another caseworker because she didnt want to deal with the telephone. It’s rough.
My hearing aid was no longer beneficial. The next step would be looking into a cochlear implant. I had reservations even when all those people with “okay hearing “kept encouraging me to get the procedure done. Those people who didn’t understand what or why I was having a problem with this decision. I was frustrated, angry, confused and alone instead of understanding some people gave closed doors, and calling me mean spirited.
After the procedure, I had received an email from a client’s sister which stated something like she thanked me for sharing some of the experience ( hearing ) and she stated something about she was sure I handled it with “ grace and finess “ I very much like that phrase and wish I could say that I did handle it with grace and finess. Perhaps I handled it the best way that I knew how. I am very much grateful for my mentors that I had met along the way.
Again I am jumping ahead of myself ….
I will tell you a little about John Hopkins. The campus stretches over several blocks. I received my first surgery at John Hopkins at just 3 months of age. Oh my how time flies. I saw all sorts of people of different: ages; genders; races: ethics. Patience came in on their feet or wheelchair or hospital bed.
The elevator took us to the 6th floor to the Listening Center. Im just a number and sit waiting until they call it.
On Feb 3rd, I had my consultation with my Audiologist, Steve Bowdish. He is really nice. Steve at the consultation reassured me on a lot of my questions for example the side affects possibilities that I read. For Example, Meneginties (sp sorry), allergic reactions, body can reject the implant and facial spasms.
I found out the possible side effects are about 1%... and Im not vain but the one I was worried about was the facial spasms.
First of all what makes me a good candidate. Idealy, I have a Sensorineural hearing loss in which the auditory never fibers are still intact, the age in which I lost my hearing plays the factor to how well the implant will perform.
Who determined if I would be a candidate? I of course played a big part of the decision, the audiologist; the otologist there are other parts of the team that can play the role too.
Once I did the consultation; Things I needed to do were the following: I did the audiological assessment; I had an MRI test down but JH needs the original films. So I had the films transferred to John Hopkins. . If JH approves then I don’t have to have a ct done; however, I have a feeling they want to see my left ear and I believe the MRI only did the rigth. ( the left ear is most likely where the implant will go).
The Bonic Ear Assoc. Steve showed me the 3 different devices to choose from and I seem to favor the rechargeable one. The websites on cochlear implants have been very helpful in my decision. http://www.umm.edu/otolaryngology/cochlear.htm
Through an email from Steve I was told given my history of "dizzyness" that we discussed at my last appt, he is recommending my otologist to be Dr Charles Dellasantina who has a dual interest in both Cochlear Implantation and vestibular issues. Someone will be in touch soon.
Isnt Dellasantina such a dreamy name!
My dizzy spells…. Ive had them ever since I was a baby I would get to the point I would be down on the floor getting sick and lasting for a couple hours until I feel asleep due to exhaustion. I had several unkind teachers ( Bedford School District Pennsylvania incase anyone is interested ) who because of their ignorance thought I was ‘faking it ‘. It all ended up being due to stress.
My first stumbling block the mri scan that was done last Thankgiving before John Hopkins... were not acceptable because they did not show good cuts/angles. Therefore, I am scheduled locally to do a catscan on February 28 at 7:30am.
In another appointment with meeting with Steve (audi)
I saw my audi, Steve Bowdish first. He took me to a hearing booth where I met Tiffany who did the audi test of both ears. They put a hearing aid in my left which felt strange because i never had anything on that side before. They were surprised how much I was able to pick up (on my right ear) because of the amount of lose I had. I didnt do too bad with hearing noise after awhile it all sounds like the tentnities anyway. I was able to hear speech but not distinguish the words.
Two things you may hear about CL. Mapping which is the process by which you and the audiologist figure out how to adjust the current and volume on each electrod of the implant so that sounds (speech and environmental) is the most natural for you. 2/ and prom stim test ( talk about that later).
Im looking into an New Bionics (manufacturer) auria processor and 120 stradegies which is the newest ci out there right now and the batters can last up to 7 - 12 hours at a time. One of the concerns I had was the processor would be on my ear and its actually 2 times bigger than my hearing aid.. My ears are very small and well I wasnt sure if it would even be about to hold a processor. The other options is to have the processor hook on to my belt, but i cant see that either.
Later I met Dr Charles Della Santa.. he isnt quite as dreamy as his name but he did have a nice smile... He is acquainted with my ENTs (ears nose and throat ) in Hegerstown. Anyway, He looked at my scans as well as showed me my scans and someone else's scan to compare. I never new that but attach the coachlea is vessles that control balance. Well, my scans showed that I did not have these vessles. All these years not knowing what caused the dizzy spells and now I know... I was missing organs that I didnt know I was missing.
We did tests for the dizziness .. he would shake my head literally and look in my eyes. He would tell me to look at his nose while he was shaking the head. I wore funny goggles im not sure why. He would ask me to stand in certain positions and promised he wouldnt let me fall. Then he wanted to make another appointment to have hot and cold water in my ears. That appointment was at 3.
I had my appointment at John Hopkins yesterday, July 25th. The appointment was at 8am so we left at 4 plenty of time to eat breakfast before the appointment. I saw both my surgeon (charles della santina) and my audi (steve bowditch).
I was to have an electrode placement and promontory stimulation testing. This test is a preoperative assessment of the auditory pathway before cochlear implantation. . This method can prove the intactness of the auditory pathway and help the surgeon in decision making before cochlear implantation.
Since I still have a little bit of hearing left in my right ear they were thinking of implanting the left ear (which i never never never had any hearing in that ear). I always was able to improvise for the loss.
I entered an examining room where they put a drop of anesthesia on my ear drum then inserted a needle in my ear. Steve then proceeded in doing a hearing test. The only thing I was able to make out was pulses and took a very long time to even get those.
At the end, they thought that the right ear may be the better ear to implant. They do want to do another mri to look at the valves in the left ear before saying ok the left ear is not going to work.
We waited and waited for about 3 hours and still no mri and i was aloud to do it in Chambersburg so I thought that’s fine there was no guarantee that I would get into to do the mri... I didn’t feel like waiting for 4 or 5 hours and still no mri.
Yes, the right ear would be a good choice because it is already known that the cholea works fine in that ear. If I do get the cl in the right ear the first month or so I will not hear anything. Presently, I can hear some environmental noises without the hearing aid. I can hear my alarm clock and in most cases my microwave.
So I will make the mri appointment, send the films to JH and hopefully this time I wont have to wait 3 months for the next appointment.
I can understand the doctors they want to implant a sure thing not a possible thing... i dont know if I would ever do a bilateral cl. What i dont want is just to hear noise... that would drive me nuts. The most annoying noise i would not mind missing are birds... please.... end of discussion. There is no way to try to see if the left ear would be a possibilty... why? the cost, time, scaring... the emotional trama and oh im already thinking im going to have a goofy haircut for a while.
I got the mri done later in the month and it came back as the vains in my left ear is much too thin to even think about a CL. That leaves my right ear which is scary because i can still hear things like my alarm clock, microwave... voices but not always the entire conversation... for about a month after the cl I will be totally deaf because they will wait for the surgery to heal before activating it ( begin mapping).
The Lounge
It was early Saturday and the first time for my car to be at the shop for an oil change. I handed my keys to the garage attendant " Bruce ". Since I was a bit early he said he would try to get it finished as soon as possible otherwise it would be an hour. He directed me to the lounge which was through the double doors to my right.
I found a big black leather chair and a magazine. It wasnt long until the caffeine withdrawl hit. I asked the receptionist if it was okay if i could get some tea. She said fine. I had a tea bag in my purse, cinnamon sticks, but noticed the water wasnt quite as hot as it should be. It all worked out and tasted fine.
As i was sitting there, I looked over at a picture frame on the wall. The plan thin black frame held a Biblical scripture from Ephisians 2; 8-9 " For by grace you have been saved through faith, and that not by yourself, it is the gift of God. Not of works, lest anyone should boast."
I thought it was great and surprised that some anti-religious person hasnt complained that it was violating their rights. You know who Im talking about ---
I found a big black leather chair and a magazine. It wasnt long until the caffeine withdrawl hit. I asked the receptionist if it was okay if i could get some tea. She said fine. I had a tea bag in my purse, cinnamon sticks, but noticed the water wasnt quite as hot as it should be. It all worked out and tasted fine.
As i was sitting there, I looked over at a picture frame on the wall. The plan thin black frame held a Biblical scripture from Ephisians 2; 8-9 " For by grace you have been saved through faith, and that not by yourself, it is the gift of God. Not of works, lest anyone should boast."
I thought it was great and surprised that some anti-religious person hasnt complained that it was violating their rights. You know who Im talking about ---
Friday, April 4, 2008
quirks!
The word "quirk" from The American Heritage® Dictionary
(n.)A peculiarity of behavior; an idiosyncrasy:“Every man had his own quirks and twists” (Harriet Beecher Stowe)
quirk
(n.)
An unpredictable or unaccountable act or event; a vagary: a quirk of fate.
quirk
(n.)
A sudden sharp turn or twist.
I like this word " quirk " I often use it as describing co-workers. Yes, in a social worker's life we have " quirks ". Perhaps its my contribution to Personal Relations. I am finding that using the saying, "We all have quirks" doesnt defeat a person's character. To me its acknowledging that we dont have to be alike or agree on everything; we have different points of view.
It seems to me that being in a profession where it seems the majority are women and being in an office primarily of women... quirks seem to pop up often. Im lucky with the group of people i work with now we seem to even things out pretty well.
(n.)A peculiarity of behavior; an idiosyncrasy:“Every man had his own quirks and twists” (Harriet Beecher Stowe)
quirk
(n.)
An unpredictable or unaccountable act or event; a vagary: a quirk of fate.
quirk
(n.)
A sudden sharp turn or twist.
I like this word " quirk " I often use it as describing co-workers. Yes, in a social worker's life we have " quirks ". Perhaps its my contribution to Personal Relations. I am finding that using the saying, "We all have quirks" doesnt defeat a person's character. To me its acknowledging that we dont have to be alike or agree on everything; we have different points of view.
It seems to me that being in a profession where it seems the majority are women and being in an office primarily of women... quirks seem to pop up often. Im lucky with the group of people i work with now we seem to even things out pretty well.
Wednesday, April 2, 2008
finding passion
I find that i spend a lot of time admiring a person's passion and not taking credit for my own. I reflect of what gives me passion. Well, first of all I have passion for God who gave me this life to live actively; nope my life is not ment to be a spectators sport. Though on occation I do enjoy snuggling up in a quilt for quiet time to journal while sipping a hot cup a tea.
It is the very essense of God and my quilt; my journal and my cup of tea that help me get up each moring to start my day. The above elements help me a social worker be refreshed ( in most cases anyway ). Its always is nice when people are happy to see you.
It is the very essense of God and my quilt; my journal and my cup of tea that help me get up each moring to start my day. The above elements help me a social worker be refreshed ( in most cases anyway ). Its always is nice when people are happy to see you.
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