Adventure at the Dentists

The same day I had my left CI activate, I also made a visit to… the dentist. If there is one thing I’m scared of, its dentists. I had called ahead a week and scheduled the appointment, informed them I would need an ASL interpreter, and was told that would be no problem. Making the call was hard for me, and I was imagining how difficult it would be actually going. With my CI’s, although I can hear and understand fairly well, when I am nervous, upset, scared, hurt or otherwise indisposed, my comprehension goes from good to absolutely pitiful. For this reason I needed and wanted an ASL interpreter.

 

I was able to muster the courage to go to the dentist, it was only because a friend of mine was going with me. When I arrived, signed in, I was then informed, there would be no ASL interpreter for the first visit… because… “there was no communication” in that first visit. Not only was I scared, but now… I was livid. The one thing I was counting on to make this visit at least a little bearable was that I was finally going to be able to understand what was said, 100%… That didn’t happen. The dentist was a jerk, he talked down to me like I was a child, I only understood about 30-50% of what was said… and that was only because my friend was helping me. I decided to show him why an ASL interpreter was necessary, I turned my voice off, and started just signing, he looked petrified. He told me that they didn’t schedule interpreters for this appointment because about 50% of them didn’t happen. I informed him of other options than a live interpreter for appointments where they don’t know if it is going to happen, such as VRI from companies like Purple or ZVRS. Then I got xrays that hurt like heck and scheduled a second appointment to review. I was mad, and I was very close to not going back.

 

When I talked with my partner, who had visited this office, I was told, I saw the wrong doctor… so I called and changed the appointment to the right dentist, and hoped for the best. I told them I would REQUIRE an ASL interpreter, and informed them of the law.

 

Well, Monday I went, and… there WAS an interpreter… I have to say being able to take my Cis off, and not having to hear the drill like I did before my hearing took a complete nose dive, and not wearing my hearing aids during the appointment to attempt to understand, but being able to SEE what was said… made the appointment much much less evil. I have to go back and have a bit more done, but I finally got my front tooth fixed I damaged when I was young, it seems it was damaged to the point where it needed a root canal.

 

I have to say… it wasn’t as bad as I had thought. The best thing was being able to understand everything, and STILL be in complete silence. When I didn’t have to use my HA’s to attempt to understand what was being said while he was in my mouth, but instead could take my CI’s off and see everything that is being said, I felt much more comfortable.

 

I have another appointment next Thursday… and thankfully with this dentist at Comfort Dental, Dr. Abe Miller, was nothing like this… which is how I picture all dentists.

 

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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

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.

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

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…

Then where do I fit?

I am on a number of different groups… some Deaf groups, some deaf groups. Some CI groups, some ASL groups… I surround myself with different types of people, and to me I think that is a wonderful thing, seeing different opinions, and different thoughts, nothing then is allowed to be dogma, but I am allowed to see facts for facts.

 

Recently… I’ve been thinking about leaving one of the groups, why? Because it seems their main goal is to end ALL cochlear implant surgeries, they are telling lies about how getting a CI isn’t a choice for anyone, that it is a death sentence, that Deaf people who choose to get a CI will be ostracized from the Deaf Community, that you will no longer be Deaf, or that getting a CI is promoting Audism… none of this I agree with.

 

Let me get a few facts out there (that are already in this blog site, but still) 1. I am Deaf, 2. I use ASL as my main Language, 3. I have a CI 4. I HAVE NOT been ostracized from the Deaf Community, nor has anyone I know who has chosen to get a CI been.

Now… there are a few things I do agree with in the most recent post that has gotten me upset… 1. CI’s should not be done on infants, 2. all deaf children should have sign language (ASL if in the USA, or the countries sign language), 3. Being Deaf should be accepted as a natural state, 4. CI’s are not a “fix”, 5. Before getting a CI, you should talk with MANY people who have CI’s (this was from a comment, not the original post)

 

Responses.

  1. if a child wants a CI, let them choose a CI when they are old enough to understand what it means to get one.
  2. Sign language is the natural language of deaf children, and should be taught first. Speech is not the important thing, language is. If you have a solid base for language, then you will be able to learn other languages easier (including the spoken forms of language).
  3. Deaf is natural, there is nothing wrong with being deaf, it doesn’t matter if it is a deaf human, if it is a deaf cat, or if it is a deaf Dalmatian (more on that to come).  It is a natural state of being, we have multiple senses for a reason, so we are not relying on only one.
  4. A CI will not “fix” hearing. For one thing, there is nothing wrong with being Deaf… see #3… a CI may or may not improve the simulation of hearing, give a sense of hearing. A CI should not be seen as a fix for a deaf person, because we are not broken. It will not give a person normal hearing, even if a sound booth test shows near normal results with a CI, because the world is not a sound booth.
  5. Before anyone chooses to get a CI, they should talk with many people who have had them, be told the good, the bad, as well as the ugly. In some cases, it doesn’t work, in some cases it works beautifully. But before you decide, talk to as many people as possible, with all different brands (no brand is honestly better than any other), with all different stories. Don’t count out the person who was a teen when she was implanted and suffered severe vertigo from it, or the person who was born deaf and can’t understand anything but environmental noise, or the girl who was implanted as a child, but can’t have it turned up to where she gets speech sounds because of facial stim, or the adult who chose a CI after progressive loss, and is doing great. Don’t count a story out, because you NEED to know the truth, things happen, its not always successful, bad things can happen, but so can good things. CI’s, just like life in general, is never black and white….

 

So, after reading these things, it gets me wondering, if, because I have chosen, not only once, but twice, to receive a CI, and if the following is true: “if it does work, you are likely to be ostracized by Deafs (you have expressed that being Deaf is bad, and want to distance from it)” , where does that leave me? Am I back in that middle ground between Deaf and Hearing where I use to be before I found my Deaf Community? Do I fit anywhere? I know the answers to these questions… because no matter what I am still Deaf, I still use ASL, and my Deaf Community has not turned their backs on me, and I know they never will, they are my family, just as much as blood makes a family.

Now I’m on another group, and I see so often pictures of children, babies even, having CI surgeries, and their parents or grandparents talking about how they are now hearing (LIE… GREAT BIG LIE) and how they don’t need ASL, or how they won’t respond to their child if they use ASL… or how they only use ASL at bath times (a sign here or there)… and that… it breaks my heart for so many reasons.

These children will never be hearing, they are deaf, and nothing will change that. ASL is still needed, because it doesn’t require batteries, it will never break, it is always accessible (even to a deaf blind child), noise doesn’t interfere with it… it is the only 100% accessible language to a child. I’m in no way pro infant or child implantation, I believe it is a very personal decision that must be made individually, and a child, especially a baby, has NO way of telling you if it is too loud, if they are feeling funny things (stimulation that can be very uncomfortable, even to the point of pain)… I think the person should make the decision, and it MUST be an informed decision. Before I got my first CI I talked with MANY adults who have CI’s, I read blogs, I have friends who’s CI’s failed, who are candidates, but choose not to get one, who regretted getting their CI, those who wanted explants (removing the CI), and those who were pleased with it. I did my homework, I actually watched a CI surgery (I must find that link), and I think that is something that is VERY important, I knew exactly what was going to be happening when I was under the knife, I knew what to expect (mostly) when I woke up from anesthesia, and I knew there was a very real possibility that it wouldn’t work, and that I would never be able to understand speech. Honestly, if you look back, my audiologist told me I was underestimating myself, by saying I wasn’t expecting to understand speech, I just wanted to be able to hear (not necessarily understand) music again, and know if someone was talking… my CI has exceeded my expectations yes.

ASL also, it isn’t something that is only needed for bath times, in fact, if you use it only at bath time… I think there are issues there… it gives mixed signals to the child, especially if the child’s first language is ASL… they may have a hard time telling when its appropriate and when it isn’t (I have a lengthy explanation of that here)

So… I also wonder… do I fit in this group? I can share my CI joy, and I love that… but do I fit in with the people who feel their deafness is something to be ashamed of, or that if you can’t hear something you are missing out? I don’t know… I am not, and will not be ashamed of being Deaf, and I know you can have a full life without hearing a thing… I’m starting to wonder… where do I fit… there are only a few places I know for sure. In my loves arms, in the Deaf community, and with my family (most of it anyways), and this… this I am ok with. I don’t have to fit with the Radical Deafies, nor with the Oral deafies, and certainty not with the audist deafs… but their stories I also shouldn’t count out…  but I shouldn’t take anything at face value either…

a year in review

So… Less than a week ago… I turned another year older, I know the age thing really shouldn’t bother me, and really it doesn’t. Age is just a number, and mine is still low… Its only 24. But every year around this time, it gets me thinking… How have I changed, how has my life changed? So here is my list of changes…

1. I moved. I am no longer in a 404 sqft studio apt, I am now in a larger, 660 sqft apt, that has the privacy of a bedroom, and the added advantage of a washer and dryer, not having to walk the clothes to a laundry facility, doing many loads at once… but having the ability, and the comfort of doing it in our own home, one load at a time.
2. I am growing my hair out… I have gone from a short haired crazy person, to a longer haired crazy person… this is something i have wanted to do for a while… but haven’t had the patience to do… (#7 has helped me with this in its own weird way… the odd haircut due to surgery). Some pictures for your viewing pleasure

Long haired me

short haired me

 

when my mom was here a few months ago

3. I am no longer reading lips 100% I now have sound to go along with it. The hearing aid still doesn’t work to help, but the CI does. This means I am less exhausted at the end of the day, and can concentrate on other things.
4. I celebrated 4 years with my love. December 7th was our 4 year anniversary, soon, amazingly, it will be 5 years. It feels like forever, I can hardly remember my life before her, well… my life after high school before her (granted it wasn’t long before I found her)… but honestly… I don’t want to… I have her, and she is the best present I could have. At the same time as feeling like we have always been each others, I’m amazed to realize almost 5 years have passed… I’m amazed at how lucky I am, that a woman as wonderful as her would have chosen me.
5. I have a new coworker. The man I had been working with for 2 years left my office in August, to go on to bigger and brighter things. This was a bitter sweet time for me, and still is. Although he was constantly late, and had me worried about what was happening time wise when I was off (if he was getting to the office on time), he knew his stuff. The new guy, is nice, kinda frustrating, but nice. He isn’t late, in fact, most days he gets to the office before I do… which is a nice feeling. But sometimes… sometimes he makes me want to take my ears off, close my eyes… sometimes I have to remember he is new to this… I can’t expect him to understand all the rules, all the goings on of the office in only a few months… although… I’m really hoping he learns the rest of it very soon.
6. I am only wearing one hearing aid, and wearing it more often. This time last year… I didn’t see the point of wearing hearing aids that didn’t help… so I wasn’t wearing them often… or really much at all. Now, because #7 is helping so much, and I’m gearing up for another, I’m wearing the hearing aid… Most of the time… not all, but most.
7. I have a cochlear implant. This has made a drastic change in my life, its made work easier, made communication with my family easier. I’m quite thankful for it. It has lead to less (and occasionally more) misunderstandings. I’m guessing what people say verbally less, so this means normally I am understanding better, normally I don’t have to guess what people are saying… but this also means that when someone is talking, I feel more confident in the words that are being said… which means when I mishear (which happens quite often), I am more confident in what is said… so this leads to some odd misunderstandings.
8. I started doing my art again… kinda – I am gearing up to start my bead work again… which I haven’t done in ages. it use to calm me, center me, distract me… just like poetry did (and might still if I tried writing poetry again… but I just… I have to feel it, and right now I don’t). I’ve also started kitting again (well… the kind of knitting I do). Its fun, it distracts, it makes me smile. I still can’t draw, I haven’t really gotten into painting… I do enjoy coloring… which I may need to do more of again.
9. I can understand words… and this… just freaks me out sometimes. I’m not having to lipread as much, I’m not having to worry about if someone is talking behind my back… I’m able to know. My last test showed a huge jump in understanding… but this was in total silence… and it is making thing easier even at home. the frustrating thing… I can understand fairly well in total silence… but as soon as the smallest amount of background noise is introduced, my comprehension goes to almost nothing… if there is more than just a little background noise, I have NO understanding… I can’t even always know if a person is talking
10.  i started school again. January of 2012 I started school again… I already have my BS in sociology… but I decided, to give myself a better chance at a fulfilling life, at supporting my love, supporting my children who have not been conceived yet… I’m going to be a computer programmer, and I am loving it!
Although my life has changed… some big, some little… and yet… so much is still the same.
1. I am madly in love with an amazing woman, she makes me smile, she makes me happy, when she touches me, I still get goose bumps, and I’m amazingly surprised, and overjoyed that I am lucky enough to have her beside me, not in front or behind me… but next to me, supporting me.
2. I am still working at the same job, still fixing computers. I still enjoy it… most of the time. I can’t say it is all the time… but most of the time yes. It still presents new challenges every few days… like right now with no matter what I do… I can’t get a systems BIOS password to go away…
3. ASL is still the way I understand best. I am so thankful I have interpreters for school, for church… because otherwise I wouldn’t be able to understand. there is just too much noise… but with ASL, I have access… true access… understanding, comprehension… the only thing that could really impede my understanding then would be someone who doesn’t really know ASL being my interpreter (although I do a fairly decent job still understanding as long as they know some, I get a general idea of the message/lecture) or someone walking in front of me, and standing there…
4. I still have the same car, even if don’t drive it often. I’m driving my work car mostly, but I have decided i actually need to drive it once and a while… or it gets hard to start.
5. I still live within an hour and a half of my sisters… but I don’t get to see them very often.
6. the phone still makes me nervous… understanding is hard… captions are helpful… interpreters are wonderful. Hearing people don’t realize how hard it is to understand if there is any sort of background noise… and I’m starting to wonder if background noise is just inherent to the phone.
7. I still enjoy computers, the consume my day, I fix them, they anger me, but they are still so fun! they are still wonderful…
8. Still living paycheck to paycheck… but the situation is getting a little better every day… or at least every month. I have a few cards paid off… and one that is very very close. I have a plan… it will take a while, a long while… but it will happen. my money situation will get better, and I will feel secure monetarily… although I know that will take some time to actually happen. Thanks to Dave Ramsey this actually feel obtainable now.
9. I still miss my mom all the time – even though I just saw her… i still miss her. She is coming back for two weeks in December, to help me after my surgery, but it doesn’t help i miss her all the time.
10. I still need “hearing” breaks daily… I need to take my hearing aid and my CI off sometimes. Hearing gets to be too much for me… and I need a break. I need to be able to in silence sometimes… to be in my un”amplified” state, to be able to just be me at times… not having to worry about listening, deciphering sound… to be… quiet.
so in many ways… yes my life has changed, and it has changed for the better… but really… the best parts of my life, they are still here… with me, and my hope, my goal… my birthday wish… those parts of me will never change.