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.

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finally an update!

Ok, so I know its been a long time since an actual update, but my world has been a little crazy, and turned upside down a bit. I have a few updates… sorry for the book of a post.

1. Location 2. Ears 3. Eyes. So here we go!!!

1. Location, location, location

Weaver's Needle Hike

I have moved. I moved from sometimes snowy Colorado to the almost always hot Arizona Desert. This move has been coming for a while now, and although I was apprehensive about it at first, I’m really enjoying it, despite the heat.

I’ve transferred with my company, at a new location with a co-worker who is great, and knows just as much as I do. We have different areas of strengths, with many overlapping (the core of our work over lapping) so we push each other and educate each other, it’s amazing! My love accepted a position as an Admissions advisor for South University, and is really loving it as well! We both work within 30 minutes of our new place, so we have more time to spend together!

We moved from a 660 sqft 1 bedroom 1 bathroom apartment to a 1048 sqft 2 bedroom 2 bathroom apartment, and our rent didn’t go up very much! Because of electric, we are going to have to rearrange the budget just a little, but we can totally do this! Its really odd having so much space, but its been a huge help. We only had to get one more piece of furniture, and it wasn’t even a necessity, more of a convince and comfort thing. We ended up getting a used couch from goodwill (I know… I know… but just keep reading). It was dirty… but in good condition, I had no idea how to clean it though… until I remembered a blog I saw a while back… this to be exact, by One Good thing by Jullee. This worked wonderfully! The couch doesn’t look brand new, but its no longer dirty, and I’m not scared to sit on it at all.

14 Ft Uhaul with a Tow Trailer

14 Ft Uhaul with a Tow Trailer

The move itself went fairly well also.  I stopped to see some CI friends in my stopover in Albuquerque for the night, with one friend being so very amazing and letting me spend the night at her place, so I didn’t have to pay for a hotel! The journey itself was long and a little lonely, normally when driving I choose not to have my CI’s on, because they distract, but this trip, I decided to give it a go, and boy, having the ability to listen to music while driving… that sure did help keep me awake. While still in Denver I had hired movers to help me load the uhaul, as my extraordinarily heavy bed would not allow me to move it myself. There were only a few casualties of the move, one being our trusty George Foreman grill (but this was 100% my fault…) my Loves parents found us a “new” smaller one at a thrift store though (which will be very much cleaned before use… are you seeing a pattern?)  We had an amazing assortment of friends and family to help us move in, with particular thanks to my Brother-In-Law(in-law?… my loves sisters husband), my father-in-law, and my 2nd Cousin! These three did most of the work on their own… thank goodness for these guys and their strong work ethic, their big muscles and their willingness to help.

We are mostly settled down in the new place, we still have a few rough edges to smooth out, but mostly, we are in a good spot. The day we moved in, I found out we also have a neighbor who is Deaf too!!! Haven’t met them yet, but can’t wait to! I’ve also found a Deaf Community here! They meet much more often than I had expected, I am use to a 1x a month gathering, but this is 1x a week!! I’ve been to the last two (They are on Fridays and we moved in On May 25th) but think I’m going to skip this weeks to hang out with my love.  We have been kayaking (once with my ears on… but that’s another post) and hanging out with my loves family, as well as some much needed time with just the two of us. I was away from my love for 3 weeks prior to my move for many reasons.

2. Ears… the journey continues.

All-Ears

So my ears… I have good days and bad days. Some days are much better than others. I have found a new audiologist, although I haven’t seen her yet, so judgment is yet to be passed. My next MAPping is July 29th, although I may have to move it up sooner… as things are sounding a bit off… I don’t know if it has to do with my IIH, the altitude change, condition change of here vs Colorado or if it has to do with my brain just not wanting to use my CI’s… I think I will need to call and check to see if we can move the appt up some. My new audiology clinic, should I decide to keep it is Arizona Hearing and Balance with the Audiologist I am going to be seeing Ashleigh E. Marley, AuD., CCC-A, who if I am reading their page correctly… knows ASL as well as Deaf Culture. So this will hopefully be a plus and a check mark in the good category.

Speaking of my ears, currently I am using my backup processors, why? Because I can’t determine if I am hearing better with the backups or if I am hearing the same. I noticed the change with my main processors so part of me is scared to use them. In a new place, with a new coworker, and 100% new clients… I need to be able to understand as much as possible… I think I may try the black (main processors) again tomorrow… but keep the handy dandy white ones with me… just in case.

Cochlear also replaced my batteries, because they weren’t really functioning to my liking… with one of the white ones lasting only a couple hours after a full charge, and the black ones deciding that blinking on the charger would be fun… but Cochlear, to their magical powers of awesomeness, they replaced them.

3. Eyes, oh what changes you have made (a side line on IIH as well)

MRI in Idiopathic Intracranial Hypertension

So, on the eyes front, it’s getting better. It’s not perfect, but it is getting better. There is no more black (doing a happy dance), but it is still very fuzzy. I’m going to have to see an eye doctor about it again… but I want to wait until it stabilizes, every week or so I see (literally!) some improvement, so once I stop seeing improvement, I’ll go back to the eye doctor. I also left my amazing Neuro-Opthemologist Dr. Kelts behind in Denver, and my insurance doesn’t cover any of them here in Arizona… so I’m looking into finding a good Neurologist, as that may be the key to getting me feeling up to par again.

My vision for the most part is getting better, it’s a slow but steady journey, but at least it looks like on the eye front I’m at least going in the right direction. Now… My eyes are 100% connected to my IIH (Idiopathic Intercranial Hypertension)… and that… well it’s like a Katy Perry song. IIH means I make too much CSF (Cerebral Spinal Fluid), and my body freaks out and thinks I have a brain tumor… and I get all the lovely side effects to it such as migraines, blurred vision (see the connection with the eyes), nausea, appetite and mood changes. (I sometimes also wonder if my occasionally awful memory is a part of this too… my love would tell me not to blame that on my IIH too) While I was moving, my Meds got all messed up… and I’m trying to get them back on schedule… and it is mostly working… but still while on the meds, it’s still a Katy Perry song (This one…) When I have high pressure being up helps, but I’m exhausted… so it isn’t easy to be up. My back is also in a lot of pain with the high pressure too… so again, it doesn’t make being up easy. When I have low pressure (due to meds suddenly working too well, attempting to over compensate my meds, or a blow out) laying down helps… but I can’t just lay down all the time now can I? No… I have to work, I have to go up and down our stairs (oh… we are on the second floor now), I have to drive, I have to listen. Both high and low pressure also come with varying degrees of confusion, light or heavy headedness, and I am constantly light sensitive… which might not be the best idea when it comes to living in the Arizona Desert. I’ve also come to wonder if my IIH plays a role in my ability to comprehend… not hear per say, but the clearness of the words. I’ll have to ask someone if they find this as well, the IIH group on FB maybe (that is based out of the UK… but I’m still allowed) , or maybe its just a CI + IIH thing, in which case, my dear deaf with CI friend at A Picnic with Ants may be able to shed some light on that as well… we shall see.

Anyways… I need to do things, and this post is entirely too long to start with. I will be updating on Kayaking! With and without my CI’s on next.

A world of black and white or a world of color?

I saw a short film a while back, from Australia where a now adult explained living before and after she received a CI, she explained it as before she was living in a black and white world, and now she had colors… This is how I feel… but about ASL, not my CI.

Before I learned ASL and was a part of the Deaf community, it felt as if I were living in an old foreign film, where nothing was clear, where the world around me was muffled, where I was alone, without friends, without true understanding. I was able to grasp a word here and there, I was able to understand some simple things, but never with fluency, never with the ability to really grasp it.

When I learned ASL, became a part of my Deaf community, my world suddenly had color, had vibrancy, had understanding, free flowing comprehension, exchanges of ideas, flow. It became a masterpiece, it became reality, and what a beautiful reality it was. It was something I had always dreamed of, no more struggling to understand, no more lip-reading people who had accents, no more having to ask professors and teachers to stop walking around the room and stand in one place, to pick a place, any place and keep that place for the semester, to not talk while writing on the board, and god forbid… have a teacher with a mustache… or BAD teeth… no, I would sit comfortably, without having to struggle, and watch my interpreters. I could have free flowing conversations with my professors, without having to ask them to repeat time and time again. I could ask them questions without wondering if I was pronouncing a word correctly, of if they would even understand what I was saying. I was free to soak in the message, without having to worry that if I looked away for just a second to make a note of something to remember or look up later I would be lost. I was finally in a place I was free to be me. I was finally surrounded by the world, the community, the freedom, the ability I had been searching for.

My CI didn’t give me that eye opening experience that learning ASL did, my CI didn’t allow me to freely understand no matter the circumstance, my CI didn’t give me the ability to understand the first time, and not just smile and nod. My CI gave me other things. If the world before ASL was an old black and white foreign film, the life after ASL was a modern day High Def Open Captioned movie. Life after my CI… when only using my CI, is like watching TV with Rabbit ears.

Some days, some circumstances, it’s good. The picture is mostly clear, the captions come a little late, but it isn’t that crisp picture of HD. Other days, you struggle to get reception, wondering how you will watch the show when the only time you can get a decent picture is if you are holding the ears, but the moment you let go… the quality goes away. I can understand if it is quiet, if there isn’t noise in the background, if I am expecting speech. I can understand best if I know the voice, if it’s not in a whisper, but also not yelling, crying, too slow, too fast, too old, too young, too foreign, too high, too low or anything else “funny”. Add any of those circumstances, and you are back to trying to adjust those rabbit ears, trying to get the right signal, trying to get clarity.

I live in a colorful world, one where ASL provides me color, provides me access, provides me clarity, and sometimes I have to adjust my ears, my rabbit ears so the hearing world can come in a little more clear… and yet other times, I ignore the hearing world and live in my world of color!! The one place I will NEVER go back to is that old foreign film, of black and white, of pain and fear.

active x2, and… icky

funny looking MAP

funny looking MAP

Ok, so I had my 2nd activation today… and… honestly… it sounds WRONG. when we were testing, it was a lot of… confusion. first couple electrodes tested… fine. then… at 16 and 17… I heard something WAY too low. not just felt it, but heard it. so we were confused that maybe my MAP would look really off… it does look funny, but it should balance out.

when she turned it on… I almost cried. why? because it was so wonderful? NO… because it was absolutely AWFUL. Like hard core style… beep beep high beep, thats IT. she was talking and telling me a story, (with my right one on thankfully) and things started to get a little… not better, but easier. Then she started to turn up the “ceiling” and that made it easier and better, still icky, but better. we did some testing, and if given context, I can understand some of the time… one funny thing though… when she was telling me holidays, I got Christmas… took some time with Halloween and New Years Day… but then… I swore I heard belly dancers day… but it was valentines day. She gave me more room this time to grow, because i am a power hungry person… but last time I left the office on program 1 volume 10, this time… when I got to where I could hear cars, I had to immediately turn the left (new side) down to volume 4… it can only get better right? Well… I will post what I got in my kit later today… going to… try to watch TV… maybe that will help it.

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…

penguins for my Processors

start with a felt cutout of a penguin

start with a felt cutout of a penguin

so… similar to my Halloween fun, I made some christmas fun. And seeing how I will be activated in less than a week, I made one for each side. I have Penguins for my processors! here is how they were made.

 

So I cut out the shadow of a Penguin, then cut out the inside white area.

add the white inside

add the white inside

After that, you still haven’t stitched anything to it yet, so you then cut out the scarf. Remember all of this is done in felt, so they easily stick together while in the process of combining them.

add a scarf

add a scarf

 

2012-12-14 18.39.482012-12-14 18.56.08Then, you use thread, sequins, and a bead in the middle to attach the scarf. I used a white sequin, and then a clear bead, once the thread was around the bead, I went through the same almost area I went through to start with.

Add a bead nose and bead eyes, and the penguin itself is done. I added white sequin behind a black bead for the eye.  I added a hat, and magically, a second penguin!

2012-12-14 21.15.58

2012-12-15 11.42.15

finished product on my head!

I then created a pouch, which can double as a finger puppet!!! (the directions for what I call the coil pouch can be found here at my Halloween Fun Post)

finger puppet?

finger puppet?

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