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

odd pain…

so… this is something that never happend with the first implant. I’m having an odd pain, where my implant actually sits. it doesn’t matter if the implant is on or off, but its there. Its not sharp, its kinda dull… but its there. the magnet isn’t too tight, and even when its off for a while, the pain is still there… anyone think it is something to be worried about?

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…

next day… ci 2

yesterday I was in the OR, having the left side of my head cut open, and a device that will allow that side to hear placed in. I had the same surgery, with the same device 5 months ago, but only on the right side. so its a comparison thing this time. I think he shaved less hair this time than last time… my jaw doesn’t hurt as much… the incision looks about the same.

day 1 compair2

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

itchy

so my CI area has been… itchy… its not the incision point, no… its, hard to explain the location. its at the bottom of the CI “bump” where the internal piece connects to the head… its on the top of the skin, so I doubt its an infection… but it just… itches. Its there all the time, sometimes its worse, sometimes its better. You would think, 3 months after surgery it would be better, but no… it itches like crazy.

The good news though, I’m 99% sure ALL the swelling is 100% gone now, and when I have my hair down, I don’t have to worry about the coil falling off my head anymore (at least not until the shaved hair grows back longer, I think that area is averaging about 2 inches long now! in 3 months!!). I have been gaging my swelling by how easily the coil falls off in situations like this, or how hard it is to get a solid connection. There was a time when I had to have part of my hair up, because it would take a lot of work to get the connection to “stick”. I would have to wiggle it around, put it under some hair, that sort of thing. Although when my hair is fluffy, I still have to put my hair up to get a good and solid connection… but mostly its fine now. I’m thinking I am going to have to find pictures of my hair before the first surgery, and be sure to take pictures of before the 2nd surgery… so I can see how much my hair has grown in the 5 months and 1 day between the surgeries. It will be frustrating odd interesting to have totally different lengths of hair. I wonder how much I’m going to have to cut it (as I did about a month after my last surgery, because it just didn’t look remotely ok).

I’m starting to wonder if he will shave more or less hair this second time, how the incisions will compair, how the sound will differ. Its taken a long time for insurance to even acknowledge that my surgeons office put in the request for the 2nd CI (They said they did it almost 2 months ago), but insurance told me on Thursday they had just gotten it the day before (the 17th). But, I should be able to call on the 25th and see if it was approved or not (I’m hoping for approved). If all goes well, on Thursday I will be able to report that there has been no current change in the surgery schedule. As of right now, I am the first scheduled, but I know if there are any kids, they will go before me. As of right now, surgery is on December 12th at 7:30 in the morning. if all goes well, in 53 days I will be waking up from surgery, seeing my family and being told this one went as well as the last one, maybe even better without the awful jaw pain… that would be nice.

sorry I got off topic of the itchy head… anyone else have the itchy head?

its Crazy how fast time can go

This is more for me to keep track of things, but feel free to comment.

in 69 days (tentatively, pending insurance approval), I will be having surgery again, to go bilateral, for my left CI.

in 78 days (again, pending insurance and surgery), I will be having my left ear activated with another N5 Processor.

84 days ago, I had surgery on my right ear to have a CI implanted.

72 days ago I had my right ear activated.

38 days ago I could tell the difference between the words “ice cream cone” and “fish”, I got about 80% right on the SPONDEE test (the easy one, with 12 pictures on it and i picked the pictures)

This is a MUCH harder version of the test than I had… I had things like “Birthday cake” “ice cream cone” “baseball” “fish” “shoe” that sort of thing… where I was more matching syllables with specific sounds I could understand as what they were, like the “sh” sound, it was very harsh.

10 days ago, I was given a shock… On the word discrimination test, open set (meaning no pictures), I got 40 right…

Time moves fast, and it seems my progress is moving fast as well. I have more days behind me with my right CI surgery, than I will wait for from now from for the 2nd surgery. I am almost equal between waiting having had my right ear activated, and will be having my left ear activated.

I have 66 days of class left for the semester, and I have been in school for 45 days. In 109 days, spring semester starts again.

84 days ago, my audiograms all showed no response on any frequency… aided my left ear gave a little, in two or three frequencies I had response around 105 db (to give you an example, you can see different db levels here, but under 100 db it says Jet take-off (at 305 meters), use of outboard motor, power lawn mower, motorcycle, farm tractor, jackhammer, garbage truck. Boeing 707 or DC-8 aircraft at one nautical mile (6080 ft) before landing (106 dB); jet flyover at 1000 feet (103 dB); Bell J-2A helicopter at 100 ft (100 dB).) Apparently your ear drum is suppose to rupture at 150 db…

here is to counting days, waiting for insurance… hopefully I will know soon.