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.

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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…

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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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Some updates…

So here are some new updates… not all of them good fare warning.

Update 1.
I am still with the job I’ve had for just over 5 years, and I’m really enjoying it still… BUT I’m now doing onsite tech work. So instead of being in a store front location, I’m working on-site, and right now I’m working a help desk. Its been fun, a learning experience and some personal growth.

Update 2
I just passed 3 months living in Arizona, and I’m still loving it. We go kyaking, and hang out with family. We’ve spent time with family game nights, we have just had a blast! The weather is beautiful! About 85-90, who would have thought that Arizona could have weather like this!

Update 3
My left cochlear implant… well… its stupid. It makes me mad, it isn’t working. I’ve been dealing with little odd issues since the beginning, but… those little issues have progressed into big issues. How? Well… most of the time when I put it on… it sounds like static in my ear. It doesn’t matter if I have the black or the white processor on, it still does it. I’m fairly certain it is a failure of my implant… but I will be pleasantly surprised if it is not. (I will make this a full blog of its own… but just a short little snip in this short update blog)

Update 4
Seeing my mom! I’ve been seeing my mom much more often than before… for the very simple reason… we are much closer!! She only lives about 6 hours away now, so this makes it so we should be able to be around each other much more.

Update 5

IIH… well… its still there (wishing it would have disappeared over night… but it hasn’t). Granted, it is much more stable than it has been… but I still get those feelings I described before… I also haven’t been able to find a neurologist yet, I know I need to… but with all the changes and issues I’ve had… it hasn’t been possible.

A journey to cueing

I admit, in the past I have been very… biased. Mentally I looked down upon things such as SEE or Cued Speech, which are modality of English and are not full languages. I can see how each would be helpful now though. I can see how SEE can be helpful in learning the grammatical structure of English, personally it is much too slow and a little convoluted for me to use on a daily basis. Cued Speech I was also biased against. I wasn’t nice to it… I thought that it had no place, that it was forcing the oral method onto people; that it was confusing; that it was wrong. I have been forced to eat my words… it has a place, it has a time, although right now… it’s still confusing.

How the phonemes are shown

How the phonemes are shown

I started on a journey to cued speech shortly before I moved to Arizona.  I had started thinking… people tell me again and again that ASL is less, and I know differently… but then after looking at myself, I noticed, I was doing the same thing with modalities of English… I was looking at them as if they were less, as if they had no place and that the people who used them were less than I, that they couldn’t master the complexities of conceptual thinking, of visual thinking, and they were stuck in a rut… boy was I wrong.

Right before I moved, I met with Aaron, of Aaron Cues, and his wife for a short Cue lesson, to get my hands wet, and to figure out if it was something I was interested in continuing. It was exhausting… eye opening… and a lesson in eating crow. These two people could communicate easily, in real time, just as I can with ASL. I thought cueing would slow things down, I was wrong. I thought it would be confusing for a child to learn, I was wrong. I thought it would work best (like lip-reading) with some sound… I was wrong. It was lip-reading with hands. With lip-reading alone, only 30% of what is said in the English Language is shown on the lips, the rest is up to you to figure out and make sense of. With a person who is proficient at cued speech, the 8 hand shapes and 8 Locations, turn the 30% into 100%. For me… right now… it turns the 30% into about 10% because I might be focusing on it a little too hard…

But I’m trying to learn, to give myself more opportunities. In the first night that I sat with Aaron and Mary-Beth, I learned many things, like I am saying words wrong. I think that Cued Speech would be very helpful in all speech therapy classes, especially for those who are dhh… because it shows things at a phonemic level, words that sound the same to a person who is dhh, may actually have different phonemes, such as a and ate commonly sound the same to me. With Cued Speech, I will be able to tell the difference between them. “A” would be cued 5C-5T (5 Hand position from the chin to the throat) while “ate” would be 5C-5T 5S (5 Hand position from the chin to the throat then a 5 on the side). Words that are hard to say, such as seven, would also be easier to learn to say if you have the phonemes mastered in other words.

Learning Cued Speech is going to take me a while, with lots of patience, lots of mistakes, and lots of practice. But, it’s a journey I’m willing to take, and something I am looking forward to. Never stop learning… and that’s what I’m trying to do.

If you are interested in learning more about Cued Speech, click on the picture above, it will take you to the National Cued Speech Association or Visit Aarons Blog posted above.

What IIH Feels like

So… after posting on my facebook that I would like to scoop out my brain, because that had to feel better than what I was feeling. And I had people who understand IIH ask for the scoop when I was done, and other people who don’t be extremely confused. So… let me give you an example as to what it feels like.

IIH, for me, is a combination of feelings.

#1. It feels like my head is going to explode. Not just a little tiny explosion… but a nuclear bomb level explosion. There is so much pressure in my head that I often times wonder if my eyes are going to fall out or if I will start leaking brain matter from my nose.

 explode

#2. Now Along with the feeling that my head is going to explode… it also feels like it will implode. People may think this is going to cancel each other out… but in fact they are not equal and opposite reactions, they are compounding reactions. The imploding adds to the exploding, and vice versa.

 implode

#3. It also feels like because of the pressure that my brain itself is trying to make its way and squeeze into my spinal column. My neck due to the feeling of my brain attempting to make its way down into my spine, is also very stiff, and I have a feeling that the pressure is messing with the alignment of my vertebrae. I can turn my neck and it pops, I can see the chiropractor, and he pops it, then 3 min later, it needs to be popped again… It seems like it is a never ending battle, me vs my neck. The neck being stiff isn’t the only issue… we also have to take into consideration the PAIN that is caused by trying to squeeze this 3 lb organ into a very small space. It hurts…

#4. It also randomly makes me dizzy… now I don’t know if this is just my vertigo flaring up again, or if this is something new, or if it is related to the IIH… but it seems to happen more (not 100% of the time, but about 65%) when I have IIH flair ups.

#5. I also get nauseous… and when the IIH flair up coincides with the vertigo… I have no idea how I am able to hold my lunch down, but normally I do.

Now… at least 3 of these things happen all at the same time… the first three. It isn’t always this bad… but to some varying degree, it always includes the three. The 3rd has just been constant, but the brain going into the spinal column feeling… that gets much worse when the IIH flairs up. People ask me… isn’t there something they can do for you? The answer is… we are trying. I’m on Diamox (which is supposed to help reduce the amount of Cerebral Spinal Fluid my overachieving body makes). I’ve had a spinal tap… which I hope to NEVER have to repeat. I’m still looking for a good neuro-ophthalmologist here, as I lost mine when I moved… but there are none in network within 40 miles of me, or really… even within 100 miles of me… so I have to find one, and stick to them because I have to go through all this red tape to *POSSIBLY* get them covered by my insurance as if they were in-network. So this means I would like to make sure I like them first… so I’m waiting to see if the doctor I’m going to see next Weds has any suggestions… and If I like and TRUST this new doctor. If this doesn’t work, then I’m going to see a plain old Neurologist, and see if they even KNOW what IIH is…

 

On another note, and yes just a note (for now), I saw my new audiologist Monday… but that is a post in and of itself. 

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.