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.

Activation… Hopefully for the last time

After seeing my surgeon for my post op, I went in for my activation. Both of my appointments were at Arizona Hearing and Balance.  I was given two new processors, and one was to be for my left (new) ear, and one was to be for my right (old) ear. These processors were Cochlear ™ N6 processors, my old processors were Cochlear ™ N5 Processors. I will explain the processors in a different post, with my review.

This activation was a little different, having already been through it, I knew what was going to be happening, and I was expecting it to actually, be worse than it was. My brain should be able to understand things better, having already had a CI, and this being a revision.

It started off the same, hooking the new processor up to my head, realizing I need a stronger magnet, and it falling off again and again.

I listened to the beep, and they were beeps not static (to see why this is exciting, click here)!!  I counted like a normal mapping, then… she turned it on.  And while it wasn’t static, it wasn’t great. It wasn’t bad… but it wasn’t exactly how I had hoped for things to go. It sounded very… robotic again… but… sound was there, and it wasn’t static, so that was a step in the right direction.

There was also a student at the activation, although she didn’t actually touch my mapping, she was just observing, and I expect was just starting her practicum, or whatever it is called for Audiology Students. She was amazed that while tests were being run on my CI, my audiologist and I were able to have a full conversation in ASL, and said she was interested in learning too.

I was given four programs for the left side, as I had expected, each with increasing volume, and was scheduled for the next several weeks for follow up mappings.

The intern walked me through pairing my remotes with my processors (Mostly the same as how I had with the N5’s) as well as some of the new features on the N6. While not everything is FDA approved for the N6, there are new features.  Again, this will be in another post.

IMG_20131203_085637_944

The rest of Monday included an eye appointment and getting contacts for the first time and a dentist appointment… and that… It might need its own post too…

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.

5 days and things are improving

so this adventure of a 2nd CI is progressing faster than the last one. This could have to do with a few things, 1. My brain already knows what it is like to hear with a CI, the same brand, the same model of implant and the same processor. 2. my left ear was and always has been, until my first CI got turned on, my dominant ear, I remember hearing more from that ear than from the right. I’m still hearing beeps and chirps, but I’m also starting to hear my good friend the robot. Its not clear yet… not even close, but its there. I can hear voices from the left (when my right is off, right is currently VERY dominant) I just don’t know what they are saying.

My audi told me I don’t HAVE to isolate the left one right now, that I can wait until the stress of the holidays is over… but I’m trying to… just not when people are talking.

I’m finding that after 5 days, although I still don’t really like the sound coming from the left, if I only have my right on, things are quiet, my brain has already gotten use to the loud that comes from hearing from both sides. Speaking of volume, I’m very happy that my audi is getting me back in sooner than the normal 2 weeks, it will be 2 days shy of 2 weeks, but I think it will be important. I’m a volume and power junkie… this I know… this she knows… so in some ways it surprises me, but in other ways, I expect it… I’m ready for more volume soon. Its been 5 days, and I’m already on program 3. I have 4 programs on each processor. On my right one, the first 2 are every day programs, with program 1 being my older MAP and program 2 being my most recent MAP. Program 3 is a music program and program 4 is noise (trying this again set by my audi, as opposed to the focus program, neither have really helped me any). On the left I have 3 every day programs, each with increasing volume and a noise program.

2012-12-26 14.28.34Getting to program 3 on the left side wasn’t as easy as it should have been… why you might ask? Because my remote is giving me… issues. The remote itself is fine… it just switching programs that is being an issue. i can get into programs 1,2, and 4 fine… but 3… for some reason its greyed out when both processors are paired. When just the left is paired, its fine, its happy, it shows 1-3 everyday and 4 noise… when just the right is paired, again, fine, happy, 1-2 every day, 3 music, 4 noise… but both… with both it shows me 3 as being grey… and has a hard time switching to it. it also confuses me with trying to control one side or the other… and not both. Which I have to do this regularly throughout the day right now… because I am bumping up my volume on the left side slowly. When both sides are being controlled, both are suppose to be colored (like the right side is in the picture to the right), when I’m controlling only one side, only the one side is colored. So… when I look at this, as it is, I assume I am only controlling the right side, but its actually doing BOTH… the only thing I can think of as to why is the different programs in slot 3, one being an every day, and one being music… but Cochlear couldn’t give me an answer… and referred me to the user manual (as if I hadn’t already checked that when I got on chat with them). I’ve emailed my audiologist, and I’m waiting to hear back from her…

but… like I was saying, I’m happy I am going in to see her before 2 weeks, because I know I will need more volume before then, as I’m already on program 3 after just 5 days. I can’t say the left is helping me any with speech, although my brain is starting to turn the left off, or at least down a lot, when the right is on (this is why I am trying to isolate the left) I know the left won’t get better unless I force it to, unless I teach it. Sound with this one, when its alone, voices seem distant and beepy, while everything else sounds loud… and still beepy.I can hear my keys on the keyboard clicking away… and those sound there, and semi close… but if someone talks… the little I can hear sounds so far away, so distant. Hopefully a new MAP in 7 days will change this.

24 hours on…

so… my 2nd CI has been on for just about 24 hours (obviously I slept last night, and it wasn’t on at that time… but its been almost a full day with it. and the one thing I can say… I have been able to turn the volume up just a little bit. I’m now at volume 5… still program 1. I’m still not… thrilled with it, but friends of mine are assuring me it will get better.

here are my thoughts for the day…

1. I think my processors aren’t quite on the same spot in my head. (this is fine… just something I have noticed.)

 

 

Photo on 12-22-12 at 10.22 AM

right CI (older)

Photo on 12-22-12 at 10.21 AM

left CI (new one)

 

 

 

 

 

 

 

 

 

 

2. the sound of the windows being cleaned is awful… mostly in my new CI, but it doesn’t feel that great on the older side either.

3. I used my angel sound program for a little bit yesterday… and I’m doing better with the pure tone discrimination than with the right ear at this point. (going to play with it more a little later and post the results).

4. I forgot how tired the CI made me… I’m so sleepy.

5. I’m going to Christmas with my sisters, father, step mother and grandma tomorrow (and 5 kids…) I think my volume will need to be down on the left side for that… I love my nieces and nephew, but they sure can be loud.

6. the left side is still interfering with the speech comprehension of the right… hope this ends soon

7. I listened to my Harry Potter Therapy (Harry Potter Audiobooks) on my way to work today… and took the right side off for just a second… and all I really heard were dings… with a few words thrown in here and there that weren’t really understandable… hopefully this fixes itself too… because even with this, using the bilateral audio cable… the left was still interfering with the right.

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…