How the time passes, a new year

As I sit writing this, there are just over 8 hours until 2014 comes, a new year, which will bring new joys, new sorrows, new challenges, new adventures, new friends and hopefully much more of the same happiness I have had this year. I want to take this time to recap the year.

While most of 2013 was a blur, there are a few things that stand out.

In February I was diagnosed with a rare brain disorder that threatened to take my precious eyesite. I was diagnosed with IIH, which I have written about here, herehere, here what it feels like, and a little bit here. And while it isn’t getting better… it is only sometimes getting worse. And the best news I could hope from with this… as of right now, my eyes are safe.

Come May… my most common thought was how to make the things in my head more appealing, how can I show them off? How can I… honestly… make them LESS BORING. And I came up with magnetic decoration! I still have, and occasionally use these.  I also, was moving. I moved from my home in Colorado to my new home in Arizona at the end of May. I am still working with the same company, but have moved locations a few times.

In August I confronted a prejudice I have, when it comes to communication, visual communication actually. I will admit, and did admit, I had seen Cued Speech as a lesser form of communication, I thought it was weird, I thought it didn’t work, I thought it was… useless. I don’t think that anymore. I feel it has its uses, I feel there are times for it. And while I will not be using it as my main method of communicaiton, I have been learning it.

In October I wrote about my Left CI failing, and while it happened at the end of August, I’m not counting that as an august post. It was hard, it was annoying, but it was replaced in November, just 2 days short of my 25th Birthday.  November also was activation which went remarkably good. And I am now doing well with my implant.

This month I have written an N6 Review and I still love it. I also have been to the dentist what feels like enough to make up for the many years I went without seeing one… something I will NOT be doing again any time soon. I will be going to the dentist for my 6 month check up just as I should.

Another very exciting piece of news… my sister is getting married June 1st!!! This will mean a trip to Colorado! It will also mean I will have to wear a dress and figure out how to keep my Cis on with an up-do.

I think this is enough for now (read back if you have to) and I will try to post more often in 2014.

Surgery… Again

Sorry this is so late, but Its been a crazy month.

I had left revision surgery on Nov 14, 2013. Surgery was scheduled for 11 AM, and I had to be at the hospital at 9AM. This surgery was with a different doctor, and there were some very noticeable differences, but I’m getting ahead of myself.

I arrived at the hospital at 9AM, when I arrived, there were two interpreters there for me, one was sent home as there was no need for two. Both interpreters were very nice, the one who stayed was about 6 months Pregnant. Inserting my IV was much easier, and even though they put it on my hand, it was much better than any of the surgeries I have had in the past. They asked me questions about sleep apnea this time, and oddly, measured my head for research they are doing.

The time leading up to the surgery was very easy, and relaxed. I had very few questions for my surgeon, because I’ve been through this before. They wheeled me back, and I fell asleep instantly (a talent of mine, even without the sleep medicine). The next thing I remember was not being able to breath, signing” I can’t breathe, I can’t breathe” and being very upset by it. No one could understand me, so I started yelling “I can’t breathe, I can’t breathe” they held my hands down, and I kept screaming, fighting them the whole time. My surgeon called this… “Waking up like a tiger” and looking back logic tells me I could breathe because I was yelling, but logic + waking up from surgery do not equal reality. I also remember being very thirsty, and them not allowing me anything to drink, because I had already vomited a few times. Finally I was given ice chips, and… vomited again. At this point, it wasn’t worth it, and I went back to sleep. I was in so much pain, they gave me as much pain medication as possible, and it didn’t even make a dent. They ended up giving me morphine, which made me so cold.

KaciMy mom eventually informed me that if they couldn’t get my pain under control, they were going to have to keep me overnight… this was something I was 100% against, so even though I was in so much pain, I lied… I told the my pain was a 3 on a scale of 1-10… when really it was at least 2x that. They let me go home, and I was given 3 medications. 1. antibiotic, 2.  Pain medication, 3. Anti-nausea medication (my least favorite, but helpful… it was a suppository, so not fun to use). My head was also wrapped up, and I was given Kaci the Koala!!!

Right After Surgery

Right After Surgery

I went home and slept, watched TV shows on Netflix, and slept more. Both my mom and my love were there to help me after surgery, which was so wonderful. 2 days later, Nov 16th, was my 25th birthday. We went to my loves aunts house for “Fake Thanksgiving” and played cards. It was fun, exhausting, but fun. Her aunt made me a rice crispy treat cake (I can’t eat gluten) and it was wonderful and so very sweet.

I was able to take my bandage off the morning of my birthday, and that was a huge relief. They didn’t shave much hair compared with my other surgeon, and there were also no stitches, but it was glued and steristripped together. When the bandage came off, I felt much better… but was a little sad I couldn’t see the progress of my head healing. I was also very swollen, my head was a little oddly shaped for a few days.

no bandage

I had thought about going back to work on Monday… but that plan didn’t pan out. I went back Tuesday, and was a little wobbly (This time I was a little dizzy after surgery… but I did expect this, even though my other surgeries I have not been dizzy).  The sterristripps kept trying to come off, so I had to get some extra to try to reinforce it. Everyone at work was wonderful about everything, and while I was gone, they knew not to expect as much as had been the standard of service.

I was happy I was able to shower on my own this surgery, because of the sterristrips and the glue instead of stitches, which made me feel much better. I had post op on Nov 25th, as well as activation. My surgeon removed the sterri strips and this is what he found! He said it looked perfect. Such a smaller incision than last time. Next up… activation.Tape Gone

Failure is not an option… but it happens

I cant stand failure, its something that I just do not accept. Unfortunately it is something that occasionally happens to the best of us, in the best of circumstances, at the worst of times.The good news… for the most part things are going well, and my Cochlear implants have a .6% failure rate at 24 months, with one being 10 months old, the other being 15 months. The bad news, I’m included in that .6%.

My left cochlear implant, is not functional… it stopped working properly at the end of August, I had it off because my left ear was hurting, and I was driving. When I put it back on, all I head was static… thinking I was tired, I went to sleep… in the morning it didn’t sound right, things just sounded off, more robotic than normal… so I put my backup process or… I heard the same thing, still the robots, still sounded off. Things started getting worse and worse, to the point that every time I put it on, not only did I hear static, but it also… hurt.

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A week later I went in for an audiology appointment, and we determined that 10 electrodes were the ones causing pain, and I had heard a few actual beeps along the way, but not much. When we turned the remaining 12 electrodes on… I could finally hear a voice… but I still heard the static, and just like with a hearing aid… when she turned up the volume, it didn’t turn up the clarity.

A week later I had to go back for an Integrity test, as the audiologist from cochlear wasn’t available for the previous weeks test. I was freaking out at this point… because we were fairly sure my implant was failing, and this test would confirm it… I had also… never met the surgeon that works with my new center. The integrity test showed some issues, and it does look like it is going to have to be replaced… After that appointment, I met the new surgeon I will be working with, he is very nice, short and seems to know what he is doing. Now we are just waiting on insurance… not sure how long it will take, but what I have learned from this in the past… call insurance and piss them off until they just say ok to make me stop… so I’m calling them on Monday.

So even though failure isn’t an option… it happens sometimes. And although it means I’m going to have to have surgery… again… and that just makes me mad. I have come to accept it, I have come to accept the idea that I’m going to have surgery again, and that it is something I can’t change if I want to be able to “hear” again from my left side.

The being unilateral again for the last almost month, has been hard. I hadn’t understood how much the left was helping me understand speech, but it was. It was helping quite a bit in noise too… and this… this just isn’t fun, and it is extremely frustrating.

The only good thing that is coming out of this painful situation is the n6. I will be getting the n6 with the surgery, or that is what they tell me, and the audiologist from Cochlear agreed. Now the question becomes, what accessories do I get… and how many times do I have to call and annoy insurance before they stop being stupid and just tell me to have the darn surgery?

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Then where do I fit?

I am on a number of different groups… some Deaf groups, some deaf groups. Some CI groups, some ASL groups… I surround myself with different types of people, and to me I think that is a wonderful thing, seeing different opinions, and different thoughts, nothing then is allowed to be dogma, but I am allowed to see facts for facts.

 

Recently… I’ve been thinking about leaving one of the groups, why? Because it seems their main goal is to end ALL cochlear implant surgeries, they are telling lies about how getting a CI isn’t a choice for anyone, that it is a death sentence, that Deaf people who choose to get a CI will be ostracized from the Deaf Community, that you will no longer be Deaf, or that getting a CI is promoting Audism… none of this I agree with.

 

Let me get a few facts out there (that are already in this blog site, but still) 1. I am Deaf, 2. I use ASL as my main Language, 3. I have a CI 4. I HAVE NOT been ostracized from the Deaf Community, nor has anyone I know who has chosen to get a CI been.

Now… there are a few things I do agree with in the most recent post that has gotten me upset… 1. CI’s should not be done on infants, 2. all deaf children should have sign language (ASL if in the USA, or the countries sign language), 3. Being Deaf should be accepted as a natural state, 4. CI’s are not a “fix”, 5. Before getting a CI, you should talk with MANY people who have CI’s (this was from a comment, not the original post)

 

Responses.

  1. if a child wants a CI, let them choose a CI when they are old enough to understand what it means to get one.
  2. Sign language is the natural language of deaf children, and should be taught first. Speech is not the important thing, language is. If you have a solid base for language, then you will be able to learn other languages easier (including the spoken forms of language).
  3. Deaf is natural, there is nothing wrong with being deaf, it doesn’t matter if it is a deaf human, if it is a deaf cat, or if it is a deaf Dalmatian (more on that to come).  It is a natural state of being, we have multiple senses for a reason, so we are not relying on only one.
  4. A CI will not “fix” hearing. For one thing, there is nothing wrong with being Deaf… see #3… a CI may or may not improve the simulation of hearing, give a sense of hearing. A CI should not be seen as a fix for a deaf person, because we are not broken. It will not give a person normal hearing, even if a sound booth test shows near normal results with a CI, because the world is not a sound booth.
  5. Before anyone chooses to get a CI, they should talk with many people who have had them, be told the good, the bad, as well as the ugly. In some cases, it doesn’t work, in some cases it works beautifully. But before you decide, talk to as many people as possible, with all different brands (no brand is honestly better than any other), with all different stories. Don’t count out the person who was a teen when she was implanted and suffered severe vertigo from it, or the person who was born deaf and can’t understand anything but environmental noise, or the girl who was implanted as a child, but can’t have it turned up to where she gets speech sounds because of facial stim, or the adult who chose a CI after progressive loss, and is doing great. Don’t count a story out, because you NEED to know the truth, things happen, its not always successful, bad things can happen, but so can good things. CI’s, just like life in general, is never black and white….

 

So, after reading these things, it gets me wondering, if, because I have chosen, not only once, but twice, to receive a CI, and if the following is true: “if it does work, you are likely to be ostracized by Deafs (you have expressed that being Deaf is bad, and want to distance from it)” , where does that leave me? Am I back in that middle ground between Deaf and Hearing where I use to be before I found my Deaf Community? Do I fit anywhere? I know the answers to these questions… because no matter what I am still Deaf, I still use ASL, and my Deaf Community has not turned their backs on me, and I know they never will, they are my family, just as much as blood makes a family.

Now I’m on another group, and I see so often pictures of children, babies even, having CI surgeries, and their parents or grandparents talking about how they are now hearing (LIE… GREAT BIG LIE) and how they don’t need ASL, or how they won’t respond to their child if they use ASL… or how they only use ASL at bath times (a sign here or there)… and that… it breaks my heart for so many reasons.

These children will never be hearing, they are deaf, and nothing will change that. ASL is still needed, because it doesn’t require batteries, it will never break, it is always accessible (even to a deaf blind child), noise doesn’t interfere with it… it is the only 100% accessible language to a child. I’m in no way pro infant or child implantation, I believe it is a very personal decision that must be made individually, and a child, especially a baby, has NO way of telling you if it is too loud, if they are feeling funny things (stimulation that can be very uncomfortable, even to the point of pain)… I think the person should make the decision, and it MUST be an informed decision. Before I got my first CI I talked with MANY adults who have CI’s, I read blogs, I have friends who’s CI’s failed, who are candidates, but choose not to get one, who regretted getting their CI, those who wanted explants (removing the CI), and those who were pleased with it. I did my homework, I actually watched a CI surgery (I must find that link), and I think that is something that is VERY important, I knew exactly what was going to be happening when I was under the knife, I knew what to expect (mostly) when I woke up from anesthesia, and I knew there was a very real possibility that it wouldn’t work, and that I would never be able to understand speech. Honestly, if you look back, my audiologist told me I was underestimating myself, by saying I wasn’t expecting to understand speech, I just wanted to be able to hear (not necessarily understand) music again, and know if someone was talking… my CI has exceeded my expectations yes.

ASL also, it isn’t something that is only needed for bath times, in fact, if you use it only at bath time… I think there are issues there… it gives mixed signals to the child, especially if the child’s first language is ASL… they may have a hard time telling when its appropriate and when it isn’t (I have a lengthy explanation of that here)

So… I also wonder… do I fit in this group? I can share my CI joy, and I love that… but do I fit in with the people who feel their deafness is something to be ashamed of, or that if you can’t hear something you are missing out? I don’t know… I am not, and will not be ashamed of being Deaf, and I know you can have a full life without hearing a thing… I’m starting to wonder… where do I fit… there are only a few places I know for sure. In my loves arms, in the Deaf community, and with my family (most of it anyways), and this… this I am ok with. I don’t have to fit with the Radical Deafies, nor with the Oral deafies, and certainty not with the audist deafs… but their stories I also shouldn’t count out…  but I shouldn’t take anything at face value either…

More awake

Ok… so I am more awake now.

The day started off really early. I had to arrive at the hospital at 5:30, even though I only like 6 miles from the hospital  I still had to leave about 5AM. I was scared, because last time when they changed the time, there was no interpreter, but this time she was there!!!

 

mommy and me waiting

mommy and me waiting

I got started, and pre-surgery was normal. I had two AMAZING nurses to start with, Shelby and Margaux. They helped keep me calm, and I only freaked out once… when they said only two people could be in the preop room with me, and that INCLUDED the interpreter. I still don’t think that was fare… the interpreter wasn’t there to visit with me, she was there to facilitate communication… she was employed by the hospital… so how can she really count as one of my two. Well the charge nurse wasn’t going to budge on it…

Well… we finished all the pre-op stuff, I met my sleep doctor (who was a much better one than I had last time). I talked to her about my concerns with the last sleep doctor, how he had popped my jaw out, and that took a long time to get back to normal. she explained how she was going to try not to, and use an endoscope to put my tube in, and that helped so very much… very little pain in the throat and very little pain in the jaw. Then I told my sleep doctor how I slept much too long last time, and how it was very hard to wake up… so this time, she gave me less anestesia, just enough to keep me under.

comparing two recovery. One was July... and I slept for about 2 hours, maybe longer, the 2nd... less than 1/2 hour!

comparing two recovery. One was July… and I slept for about 2 hours, maybe longer, the 2nd… less than 1/2 hour!

I woke up in the recovery room, they brought me out of surgery to my nurse at 9:10, I was starting to wake up by 9:15! The OR nurses were trying to put my CI on my head like I had asked… but they were failing a bit. I had to have them give it to me, as I lay sleeping there, and put it on myself… and they put it under the bandage… that wasn’t so comfortable. I ended up switching that later. I remember getting my X-Rays taken (not so fun)… throwing up because they laid me down too quickly, saying I needed to go to the bathroom, and trying to use the bed pan… but it doesn’t work, and getting a half cup of ice, and being thrilled about the ice. then I went back to sleep for a little bit… I woke up randomly… but was actually awake awake by 9:35. We needed to get my pain management under control first though… and I REALLY needed to pee. So I walked to the bathroom, went pee, and was given some apple juice. By the time i was ready to be moved, my pain was under control and i was fully awake, I had to go to the bathroom again. I was able to walk on my own, and not have to worry about falling (down or asleep). I went into the “phase 2 recovery” room where I could see my family, and I had a glass of water (which I was almost 1/2 done with), and was asking for jello. I caused myself an issue… I drank much too much in much too short of a time span. Causing me to vomit. My nurse for this room, Craig… not very nice. He NEVER asked me how my pain was, all he did was start discharge paperwork, he never checked to see if I was doing ok, if I needed anything… when I needed to have pain meds, my MOM had to find him, When I told my mom I wanted some I was in-between a pain of a 4 and 5 on the pain scale and I wanted to be sure it didn’t get worse. By the time my mom was able to even FIND HIM, I was at a 6 or 6.5… by the time he got me my pain meds (at least 15 minutes later) I was at solid 8… I was almost ready to cry… and when he came back 20 minutes later, he didn’t even ask how I was feeling…

Well… now I’m home… and feeling much better. taking half a pain pill every couple hours… hoping that stays on top of my pain. I’ve added a little slide show. but I think it may be attempt at bed time now… hope that I sleep longer than a few hours at a time… I slept on my amazing SO’s lap this afternoon with my wonderful neck pillow… but got scared when she moved. Update more later.

Charlie's felt Ci's

Charlie’s felt Ci’s

Charlies

at home with Charlie, I made his CI's since I don't have Kaci

at home with Charlie, I made his CI’s since I don’t have Kaci

smiling at home, ready for bed

smiling at home, ready for bed

 

 

insurance battles… and yet…

So… after fighting with insurance for months, being told they don’t have the information, being passed along the “its not my job” belt with insurance… I finally have an answer for my second CI surgery.

Now before I give you the results, I want to discuss my reasonings for wanting a second CI.

 

  1. The first CI is doing better than I ever hoped, I’m understanding much much more with this one than I have in memory with my HA’s
  2. studies have shown bilateral recipients hear better in noise
  3. music appreciation is suppose to be better
  4. localization of sound
  5. I’m an adult, and am able to make the decision for myself.

I know a CI would never make me “hearing”, but that isn’t what I want. I want to enable myself with all the tools that I can, for my future, and for my families. I will still be Deaf, I will always be Deaf, and I will always use and love ASL, but for someone who receives no benefits from Hearing Aids, and works with people all day, the CI is the best option for me, especially when combining them with the wonderful language that is my ASL. I am thankful my friends and family are willing, at least some of them, willing to learn ASL, so that I will never be without communication, without understanding.

but, after months of fighting with the bureaucracy that is insurance, with the many phone calls, many emails, of them saying they don’t have the paperwork, then finally, on the 18th they told me they had the paperwork, but then the 25th saying they had no record until I offered to show them proof I had been told the information was received, then saying they needed clinical information, then calling and being told it wasn’t there, then it was there… and finally being given a reference number as to my claim… after hours on ip-relay with them (this way I can keep a record of the conversation), occasionally being hung up on, given the tty number… and accused of not being who I am… finally I was able to get an answer, I was able to be told… on December 12, 2012 (12/12/12) I will be going back in for surgery.

left aid, Phonak Naida S UP

My left ear, which at this point is plugged up with a purple Phonak Naida S UP, which provides me now with only the ability to know if a loud sound was made, thanks to the vibration on mr ear drum, but who use to provide me with access inside the speech banana, will be retiring soon. In 40 days, 19 Hours and some change… she will be joining her friend in a box… waiting for the next user.

Am I excited, yes, I am not going to lie, the past 3 months with my CI have been great, I’ve gone from being 100% exhausted at the end of the day to only being kinda exhausted. I’ve gone from wanting to scream at people who don’t move their lips to occasionally being able to understand them. I’ve gone from being the hardest person to get the attention of, to turning around in circles for my name… It has made my life easier at home, easier at work. School is still the easiest for me, because I have my wonderful interpreters who make sure I don’t miss anything, who make sure I have complete access to language, to the lecture, and occasionally the films (when they don’t have captions). But… have I gone from Deaf to Hearing? No, not in any way shape or form. I am still Deaf, I am still deaf, but I can function as a hard of hearing person in the hearing world. I can function as a Deaf person in the Hearing world, I can function as a Deaf person in the Deaf world… I have it all. I can listen to music and still feel the beat, feel the vibration. I can walk into a room and not struggle to lipread 100% of what is being said without sound, I can hear the phone ring at work. I am blessed, and excited to take the next leg of my journey, of my adventure.

I know my hearing friends will be thrilled, and I know my Deaf friends will welcome me with open arms still. We all know this doesn’t change who I am, it just gives me another tool, to make this hearing world we live in… a little less frustrating. oh… did I mention… I am also suppose to be able to get Kaci the Kola too? My love had promised me that because I was sad I didn’t get him for the first surgery, I could have him this time? he can be seen and purchased here

almost forgot about those darn gerbils… not

Many months ago, I saw a short film in BSL (British Sign Language), and recent events have brought the film back into my mind. It is a sobering story, with many lines that break my heart… with a tale that breaks my heart… and a future I hope never comes to fruition. The film is called “The End”, and it starts in 1987, at a school for the Deaf, it ends in the future, with the simple, yet heart wrenching line “I am Deaf”… I will let you watch it on your own.

BSL Zone, The End

What made me think of it? Was it seeing so many people with CI’s and becoming one of them? No. Was it imagining a future without deafness? No… it was something that also came out of the UK… it was a story about gerbils… I know… seems kind of weird.

Gerbils… 

Now that hopefully you have gotten a chance, to both watch the one film and read the article… let me give you my two cents.

this tech, although could be useful in so many ways… it scares me. I don’t want my wonderful, beautiful, amazing Deaf culture to go away, and that is what it looks like their aim is, to stop there from being any more deaf people. Why? That is the question I am asking myself, why? Is it because we are dangerous? No… I’m thinking its because we are different. Different from the majority, different from their idea of perfect. Through out history, we have been seen as less, we have been seen as wrong… people have forced us to learn to talk, learn to lipread, learn to accomodate them, rather than them helping us become the best we can be within our selves. This is what scares me.

We are already a world that cares more about beauty than what is inside, we do not value intellect any longer, this is especially prevalent in our television shows and our lack of funding for education here in the United States. We are a culture that on the outside appears to value the individual, but in reality it values sameness… anyone who is a little different, who views things differently than the majority, is squashed. We have already seen this happen to the Deaf Community, although we do seem to have a knack for living on, thriving during the impossible… but if this is whole heartily squashed out of us in infancy, so that we do not even have a chance to come to understand our roots, our identities, how will we know where we are truly destined to go? If we aren’t given the chance to self actualize, what will become of our world.

One of the quotes from the video, that terrifies me, because it is already something that is being told to us, already something that is being ingrained into our heads, from a very young age… “We aren’t forcing the treatment onto anyone, but if they want to have a BETTER life, they will take the treatment.” substitute treatment for CI, and this is what you get, a world were so many deaf children are having their heads cut open, and a device implanted inside of them. (Now I want you to remember I am NOT against CI’s, I have one and plan on getting the other one done soon)… but these children are not given the opportunity to learn ASL, or the language of their country. They are given a limited restoration of their hearing, a mechanical device that is not the same… and told they are “fixed”… when there was nothing wrong with them in the beginning.

If we start trying to fix differences within ourselves, it won’t be long until we are all just the same…

It isn’t only my beautiful culture possibly ceasing to exist sometime in the future, it is that if they can regrow hairs in my head that are long dead, what can they do with other things? Will they create factories where everyone has body parts growing? and life extends forever? Will our world become so grossly overpopulated, (it is already over populated), that we are forced to find refuge across the stars, finding other planets to desiccate, leaving nothing but a wasteland behind us?

What will happen then? I know the gerbils aren’t the only thing leading us to this desiccation, but if we try and remove the difference between people, does that make the medical professionals we trust any better than someone so set on eugenics? In my opinion no. I think this is a form of eugenics, it is destroying a beautiful population, my population… and I don’t need your cure.