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

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

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 2^nd 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 25^th) 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.

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 29^th, 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)

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

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

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

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

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

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

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

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

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

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

More implant decoration!

Processor decoration

More to come!!

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…

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

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

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

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…

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…

update

So here I am… waiting for my doctors appointment… I’ve been referred to a neuro-ophthalmologist, someone who specializes in the optic nerve. My ophthalmologist found nothing in my CT scan… although he really would have preferred to do an MRI, but with having cochlear implants, that isn’t something that is possible.

My right eye, which started with one black dot on it (from my POV, not from someone looking at me) now has 13… and my left eye has one, which didn’t have any before. Its getting hard to read, its getting hard to drive… my head is constantly in pain. I’m fairly sure the reason I am having such bad headaches is because my left eye is having to work over time… and my brain isn’t happy about that. The optic nerve being swollen prob isn’t helping any either.

Looking at the computer, which is what I do all day every day because of work… is getting hard. This also means that doing homework is hard… as that combines both computer work and reading… I am feeling… starting to get a little depressed because of it… wondering if I am even going to be able to continue my classes this semester, if I am able to continue school at all… If I will do well this semester, because reading and computer work is getting hard. I’m not sure what the rest of this semester will hold… or what I will do… or be able to do…

Eyes

So… I’m now having issues with my eyes… and I apologize right now for any spelling issues, I’m typing on my phone with dialated eyes… so I am seeing a bit double and reading what I’ve written is hard. I’m having black spots and they have increased in number I’m also having some weird red bubble on my left eye. Went to the eye doctor today… and I need new glasses and to actually use my glasses… but it was kinda scary when she said she needed to send me to a medical eye doctor right away…
Now because of this short notice… this also means I have no interpreter… so here is to hoping I can understand… I’ll update when I get a chance. I’ve been super busy… did you know eye dilation is a pain? Because it is.

how long does it take?

So I moved into a new apartment in August… I love the apartment, I hate the maintenance. I signed papers, and told them the accommodations I would need, such as a flashing smoke detector and a flashing doorbell, they said no problem. Well, a month after we moved in, it was finally complete.

Then we started having issues with our dishwasher… and it took 9 work orders and a strongly worded and very angry me to get them to finally fix it… or rather, replace it. They had been saying it was fine, they would put a few pieces of silverware in it… and say everything was fine…

Now… our water does this frustrating thing, where it is perfectly normal, then blistering hot, then freezing cold, then blistering hot again… and this happened Sunday, and I accidentally took the shower head off… while trying to protect myself. We called them on Sunday, knowing it wouldn’t get done on Sunday, but thinking, Monday it would be fixed… it takes less than 15 minutes to replace the shower head. Well… what has happened? it is still not fixed. I went in, and politely told them I would like to be able to shower, at 4:50 PM, they told me it would be done within 30 minutes… it is now 5:37… almost an hour later, and its not done… I’m giving it until 6, then I’m calling, and I don’t know if I can be very nice…

how long does it take to get things fixed at your apartment?