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.

Christmas 2013

My christmas was full of many ups, and just a couple downs. I had a great time with my amazing fiancé and her family. We opened a few presents at home, then headed for some fun at her parents house. So many people feel as if this season is all about the gifts that are received, but I have come to feel it is much more about relationships and time spent together. While spending time together as a family is nothing rare with these guys, its great to be able to do it on a day such as Christmas. And while we did exchange gifts, they were mostly home made, and were more than just possessions, they were gifts of each other.

 

We arrived at her parents house around 10:30 sat and chatted, made a beaded christmas tree (so they now have one for each of the girls) and I did a little bit of work that was needed for the office.  We didn’t have an actual meal, snacks were out, but it was mostly spending time together. My SIL and her family (including the most adorable almost 2 year old) arrived and the baby took a nap. More of the same continued. We opened presents, and gave little pieces of ourselves to each other. Laughed and smiled, giggled over the silly gifts, cried over the ones that touched our hearts (ok… maybe that was just me). My SIL didn’t seem to be feeling well, but she was still having fun. The last gift that was given was a calendar, full of pictures of my SIL, her husband and the beautiful baby… with one surprise… a due date. The reason for her feeling icky, a new baby was on the way!  I cant wait to meet this little bundle of joy in August, and I know that once again, they will make fantastic parents.

 

Later that night, I started feeling ill, so I took a little nap as they watched a movie without captions (we couldn’t get them to turn on sadly). A little while later, my love came up to me asking for us to go home, she wasn’t feeling well either… we must have caught something the night before at her aunts house. By the time we got home… we were sick… and not just feeling icky sick, but SICK. Sicker than I have been in quite a while, and we both had to work the next day… which was no fun for either of us.

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.

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?

Answers… maybe? Hopefully…

So yesterday I went to the neuro-opthamologist, a specialist who is a medical doctor and specializes in the optic nerve and is sort of a cross between a normal opthamologist and a neurologist. By golly… this was a long appointment…

It started out by them doing tests… taking pictures and measurements of my optic nerve. They had a decent time doing it with my right eye… I was suppose to follow around a blue light so they could get different measurements of my eye. The only times they had trouble is when that blue dot would disappear… because it went behind one of my black floaters. Then they did the left eye, apparently I was trying to focus too much, because they had a very hard time getting the measurements from that eye.

Vision Field Test

Vision Field Test

After that I had a vision field test. which is where you put your head into the contraption to the left, have one eye covered by an eye patch and press a button every time you see a light flash. This tests for blind spots. Blind spots are normal… just not very large ones or very many… my left eye Vision Field Test looked mostly normal (I will post pictures of the results once I get them in paper), I had one slightly larger than normal blind spot. Now the right looked almost like a patient with glaucoma. I had a huge blind spot… that covered almost half of my eye…

I think this is what it is... it bounces up and down on your eye

I think this is what it is… it bounces up and down on your eye

The Vision Field Test then prompted me to have a pressure test… you know that one where they blow a burst of air into your eye? I hate that one… and after 20 minutes and MANY failed attempts… (thank you eyes for automatically closing when the air comes out)… the decided that my eyes were not cooperating… so they needed to do it in a different way. At this point… they put numbing eye drops in my eyes… and put this.. thing on  my eye. It bounced up and down… measuring the pressure. This also took forever… because you have to be still… and my eyes aren’t really fans of having ANYTHING touch them.

After that test I did a light refraction test. Which is very easy… you just sit there and look at a house as it goes in and out of focus. After that… I waited to see the actual doctor.

The first time I saw him (I saw him 2x yesterday), he ran tests on my neurological condition… seeing if things were brighter on one side, if I had the same amount of strength on both sides, asking me questions which I saw no point to… such as “Do you have any issues speaking” I looked at him like he was CRAZY… and signed Deaf… which confused the interpreter (more on her later…). He at that point told me he wanted to start me on a 3 day course of IV steroids… then 10 days of prednisone that tapers down to almost nothing because he believed I had what is called optic neuritis. This term basically means that one of my optic nerves is swollen. It can be caused by many things, including high blood pressure (mine was perfect thank you very much… even with my head feeling like it was going to explode), spinal meningitus, or… even MS. He also wanted blood work done, to rule out things like thyroid issues. He then decided he wanted to run one more test…

two electrodes in the front... one in the back

two electrodes in the front… one in the back

This last test is called a Visual Evoked Potential test. Basically you have two electrodes placed at the front of your head, and one in the back. It measures how long it takes the visual stimulation to go into your head, as well as how much you are getting.

After this test, he said he wanted to see me again… he had made some changes as to what he believes is happening. He came in and explained the abnormalities to me. His first thought, the optic neuritis, I didn’t quite fit after he reviewed everything… the information from my previous doctor and the new tests. He said that with optic neuritis, normally it is only one optic nerve that is swollen… both of mine are. He also said it was odd that my left eye isn’t having as many issues as my right… although the headache is normally centered right behind the left eye, and slightly to the middle. After reviewing all of the information, he decided to change the diagnosis… from something that doesn’t sound too scary, but has some very nasty causes to it… to something that sounds… scary. He changed the diagnosis to pseudotumor ceribri (PTC), also known as Idiopathic intracranial hypertension (IIH) or benign intracranial hypertension (BIH).

this is what will go in my back...

this is what will go in my back…

Basically this means… I do not have a brain tumor… but all of my symptoms are pointing to a brain tumor. This is caused by increased spinal fluid around my brain, putting pressure on my brain and giving me the symptoms of a brain tumor… without the actual tumor. This is good he said… because we can treat it. It also isn’t linked with MS!! But… what this does mean is I will be having a spinal tap or a lumbar puncture. This will do a few things.

#1. It will measure the pressure of my spinal fluid

#2. It will relieve some of the pressure. hopefully making the awful headaches go away and will either cause my vision to become stable or improve.

#3. It will allow them to test the Cerebral Spinal Fluid (CSF).

Now the question is when? When will this happen? I’m not sure. I have to wait for them to call me, to tell me when they have available. I’m not looking forward to the spinal tap… I think only crazy people would… but I am looking forward to having some relief.

Now… about the interpreter…

I can’t say how thankful I was to have my implants yesterday… I couldn’t nearly understand everything the doctor or nurses were saying… but I am 100% certain she misinterpreted what I said… to the point I went voice on. I have no clue how this lady can STILL be a Certified interpreter… let alone a medically certified interpreter.

#1. This lady took forever to even start interpreting… and when she did… it was all too literal interpreting. and way more fingerspelling than is strictly necessary… telling me she didn’t understand the meanings of the words…

#2. when the doctor asked me if I was allergic to any medication, i finger spelled doxycycline, she looked at me like I was crazy… then said TETRACYCLINE… d vs t… they don’t look the same… there was not a single t in the word I spelled… so… I corrected her by speaking…

#3. I don’t discriminate against age… I don’t discriminate against abilities or what some would call disabilities… but this lady… she honestly needs to retire from being an interpreter… she was seriously… 80 or 85. She admitted to me she also has vision problems, and she also has hearing loss and couldn’t quite 100% of the time understand the doctor… THEN STOP BEING AN INTERPRETER… WHERE PEOPLE RELY ON YOUR ABILITY TO UNDERSTAND AND INTERPRET… This could have been a life or death situation… and what if I hadn’t understood that she said the wrong antibiotic that I am allergic to… and what if he gave me doxycycline instead… I appreciate she was probably a really good interpreter in the past… but she isn’t now… she needs to retire… and the company who hired her (A&A Languages) needs to not send her out on any more jobs… this could have been BAD…

Thankfully I don’t think she will be taking any more jobs for this doctor… because I could see her mentally freaking out, and attempting to (and failing at) spelling the words coming out of his mouth.

She also told me that the condition has 3 names, and broke it up as such. 1. Pseudo 2.Tumor 3.Ceribria (as she had spelled it)… no… wrong wrong wrong. the doctor said he would write them down for me… and those three names were… 1. pseudotumor ceribri 2. Idiopathic intracranial hypertension 3. benign intracranial hypertension.

I have decided… if I see her again… I am going to run in the other direction…

An adventure I never want to repeat… the City Bus

Ok… so my bus adventure started off nice and relaxing, got to my second bus stop fine, and we made no stops until we all had to get off, so I knew it was my stop. I boarded the free mall shuttle that would take me to the light rail, got to the light rail all was still fine. I was a bit cold, but I was fine, and feeling more relaxed, I knew the light rail, I had taken it before, and it was something I felt comfortable riding. I have mentioned to my partner if the light rail went up to work, I would take it every day… but sadly it doesn’t. I got off at my stop, and this is when… things started to take a turn for the worse.

 

Screen Shot 2012-12-28 at 3.46.35 PM Screen Shot 2012-12-28 at 3.46.46 PMIt was cold, very, very cold, about 11 outside… I was suppose to have an 8 minute wait for my next bus, but the bus was late, and I had a 15 minute wait. This was ok… I was very cold, and the bus driver wasn’t that nice… I told him where I needed off because this was my first time on the bus (I include the whole trip as my first, and hopefully only experience with the City Bus). He said he would tell me my stop, I sat near the front, and heard him say, you there, this one. I asked me? He looked at me like I was stupid and said, yes, you. I got off, he drove away… then I realized, wrong stop.  The bus was already gone… the next one was in 30 minutes… my phone was dead. I decided… ok, I will walk to the next stop. By the time I got to my next stop, I saw the bus leaving the stop… Ok… I’ll just walk, try to find  phone to use to call my SO so she can come pick me up. Every place I walked into told me no, I couldn’t use their phone… so I walked… walked and walked. I was close to home, couldn’t feel my legs, couldn’t feel my behind, and couldn’t feel my hands. I got to the subway near my house, and tried to use their phone… but it was having issues… so I walked the remaining ¾ of a mile home… in total, I walked 2.1 miles, in 11 degree temperatures…

I got home, and my legs were totally red, I’m sure the only reason I didn’t get frost bite was because I was walking, and my blood was circulating faster than average. It was awful… horrible, and this is something I NEVER want to experience again…