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.

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.

I’d like to think of them as human

So I have to admit something… I have an addiction. If the first step to the road of recovery is admitting you have a problem, consider this my first step. Here is the kicker though… my addiction is a certain game… called… Candy Crush… I know I know, it’s not a real addiction, and it isn’t one I’m willing to give up just yet, but hear me out… it’s a game sensation. If you haven’t tried it yet, here is your warning, it is ADDICTING. Let me go on to the main reason of this blog post: the game makers.

Now the game is fun, its addicting, but those game makers, I’m sure if they are human and have any soul at all, (and if they had the ability to watch me play) they would get so frustrated with me, screaming at me, “just pass the level, pass it, here… here’s an easy start, now don’t screw it up… why did you have to go and screw it up… I just told you not to!” well… that’s what they would do if they were human, and I would like to think they are… but if you have played the game… you may come to the same conclusion as me… the game makers are NOT human. And if they are, they have no soul, they like to see pain, they like to torture us into thinking we can pass a level… then throw it in our face we were one “ingredient” or “Jelly” short of passing…

I can picture them (humor me now…) being by the computer, in their metal shells, laughing manically, sounding much like a dalek, or… come to think of it, speech through a Cochlear Implant… watching and gaining strength as they see the frustration they are causing us, enjoying the torture they put us through.

And what’s the point of the game anyways? I haven’t really come to know that yet, is there actually an end in sight? If so, what lays at the end of this candy land like maze we are traveling through? Is there a pot of gold at the end of the road? Or do we simply get to gloat that we spent hours, days, weeks, months playing this game with no end in sight, with no understanding as to what our eventual goal was? That we defeated “jellies” and mutated chocolate, set free caged candies, blew up bricks? To this… I’m not sure… but hopefully the adventure is worth it, maybe, if and when the time comes I make it to the end of the candy coated path I will know if the game makers are human, or maybe… maybe, if your mind is as weird as mine, they are waiting for the whole world to be playing this game, letting our defenses down, and they will invade the earth in their multicolored spaceships, throwing candy bombs down upon the earth, seeing how we like the real version of their game… who knows… maybe we won’t even notice as we get blown into bits, maybe we will think it’s the next upgrade in technology. Simulated reality of the game we are playing, a game created by creatures that may look something like this…

Will the doctor come and save us?

Speaking of doctors! I realized I haven’t updated on my last post. I have answers, I do indeed have Indiopathic Intercranial Hypertension, and have been started on Diamox, a medication that lowers the production of Cerebral Spinal Fluid, because apparently my body is an over achiever in that aspect. I’m feeling better, I have had a few headaches, and have started seeing light through the darkness in my right eye!! I’m hoping this is a good sign that my vision will return to normal soon, oh right eye vision… how I have missed you. I have had a few headaches since the spinal tap and taking the Diamox… but I’m not really sure if they are IIH headaches or normal headaches, I think that will take time for me to figure out which is which and how to tell the difference. I have a follow up Tuesday Morning with the doctor, I also have a MAPping session that day, so I wonder how much homework I will be able to finish… oh back on track…

So, if you have played the game, would you like to think of game makers for candy crush as human (I would like to… but I’m not entirely convinced)? Or do you feel as if they have created a system where they thrive off the torture they have created? Patiently waiting to take over the world?

back to square one?

Back to square one?

So… I had my spinal tap yesterday, and let me just say… Huston, I think we have found a new form of torture… Let me start with that…

So… when I originally made my appointment, It was for 8:15, by the time it came time for the appointment, I had to check in at 7:30. I was told I had to be there for 4 hours, although the actual spinal tap would only take 15 minutes in the room. I got there after driving 30 minutes to the hospital… When I got there I had to check in with reception, well… there was no interpreter there. I am not a happy person when I do not have an interpreter… if you don’t believe me, look at my first CI surgery. I kept reminding myself that it would take some time before I was done checking in, and the interpreter had to be there by then… right? I’m thankful for my CI’s for the admission piece, as well as my amazing Love who helped me understand what was being said. I finish checking in, and signing the patient bill of rights, (which clearly stated that I was allowed an interpreter!) and the woman who was doing my admissions was going to call the agency to ensure that I actually had an interpreter who was coming. Right before she called, she looked behind me and there was a lady standing there, she was asked if she was waiting to check in (you have to sign a paper), and she said no she is an interpreter, and that made me happy.

After check in, we waited to be called back, and… I went from no interpreters to two! A guy showed up, said he was an interpreter (he saw us signing I believe, my love, myself and my interpreter) here for me… apparently there was a little miscommunication. Neither of them were upset, my partner asked what would happen in this situation, and they both answered one of them would leave, but they would still get paid. Well, then someone came out and said something about needing a hospital interpreter… so it seemed as if I would end up having 3… well, that was a miscommunication too… they wanted to talk about letting one of the interpreters go home… so I had one, and she was very nice.

They got me in the back, and made my Love stay out while they get the IV in, I think the reason for that was because one of the questions they asked me was “do you feel safe in your home, are you being abused” and they don’t expect an answer that is honest with another member of your family there. Well, I finally asked if she could come see me, they said yes. I waited another 10 minutes, and she wasn’t there… they were supposed to get her already, but the nurse got distracted. I refused to be brought back into the room until I was able to see my love, because I needed to see her. I was brought back into the room, and… there was construction… loud noisy construction, in a room where they see patients… with lights flickering, and everything… it was scary. So… being me, I decided… I’ll just take my implants off! This solved that issue… but why in the world would they have construction in a room where they will be seeing patients?

Well, as soon as I got back into the room, I had to pee like none other, again and again and again… literally, I went to the bathroom 5 times from the time I got into the room where they actually do the spinal tap. Well… the doctor came in, and started explaining to me what was going to happen, she was going to numb my back, which was going to be the worst part of the whole procedure… and yes… it sucked but it was not the worst part of the procedure… that had to be between her hitting my bone, and me feeling it, or when the local was starting to wear off, so I could feel her putting the needle into my back. After many, I mean like 4 or 5 attempts, she was finally able to get spinal fluid.

She was confused though, because my doctor believed I had IIH (Idiopathic Intercranial Hypertension) or too much pressure due to excess spinal fluid, and my spinal pressure was low. I’m not sure what this is going to mean about my diagnosis… but I’m frustrated, back to square one and had to lay down all yesterday, flat except to go to the bathroom and to eat… We will see what the doctor says tomorrow when I call, because they are closed on today…