EqualityCare inquiry

I sent an inquiry to the Wyoming EqualityCare about their coverage for cochlear implants last Friday... Today I got a response from them.

Dear Client,

This correspondence is in response to your recent Ask EqualityCare submission. Wyoming EqualityCare records indicate that the prior authorization for cochlear implants was denied as the client is able to communicate through speech. In order for a prior authorization to be approved for clients over the age of 21, the client must be unable to communicate through speech or other means to make their medical or basic needs known. The documentation that was submitted to Wyoming EqualityCare states that this is not the case. If you believe this is incorrect, please contact Rocky Mountain Ear Center.

If you have any additional questions, please contact ACS Client Relations at ------------

Sincerely,

ACS, Inc.

Client Relations

I have forwarded this email on to Advanced Bionics. This is just not right at all, how can they factor in how well one communicates, despite how badly they hear? Even FDA guidelines doesn't factor in communication skills, just hearing loss and how POORLY the person hears speech with hearing aids. This is an outrage!

Medicaid's reasoning...

Just got a reply back from Rocky Mountain Ear Center on why Medicaid/Wyoming EqualityCare denied the cochlear implant.
"Equality care is stating that DOES NOT MEET CRITERIA: PATIENT ABLE TO COMMUNICATE THRU SPEECH."

Um... how messed up is that? So I have good speech and I communicate orally, that doesn't mean I shouldn't get an implant. If only they could actually SEE how I function with the little hearing I've got in the right ear. I can't even understand my own MOTHER without facing her. I have to lipread everyone in order to make sense of what they're saying, I need subtitles/captions on at all times, I need all the visual support I can get! I can barely use the phone these days, and always struggle to make sense of what my own mother is saying over the phone. She constantly has to repeat what she says on the phone for me to get it. I'm astounded over their reasoning, I really am. So I got lucky with having good speech, thanks to the deaf school and a dedicated speech therapist working with me on my speech. I'm lucky I can still communicate via speech, but I need all the visual support I can get when it comes to understanding what the other person is saying. And if I'm out at a restaurant or noisy situation, communication is pretty much... zip, even with lipreading I just can't understand crap. I can only lipread if I can hear what is being said, and I can hear if I can SEE what is being said, so I'm screwed either way. Come on Equality Care, seriously. That's a really stupid reason to deny the cochlear implant to someone who has 1 fully deaf ear and 1 that has about oh 20% hearing and can barely get by with a powerful hearing aid. Golly.

Rocky Mountain asked me if I wanted OMS Insurance or Advanced Bionics to do the appealing. I told her to send the information on to Advanced Bionics. We'll see how things go. Seriously.. just... wow.

Denied...

Medicaid has denied the cochlear implant request. Rocky Mountain Cochlear Implant Center will send the information on to OMS Insurance Support, and OMS will appeal, and hopefully work their magic. I might even get in contact with the Let Them Hear Foundation and see if they can be of any support as well.

Edit: LTHF is currently not accepting any appeal requests, so I'll just have to rely on OMS at this time. That's fine with me though. Also contacted Advanced Bionic's insurance support as well, to see if they could be of any help.

now I'm a bit torn...

With the news of the new Cochlear Nucleus 5 device now out on the market, I read up on the info for the new device... and now I'm a bit torn as to which implant I would choose for myself. For the last few years I've been thinking Advanced Bionic's Harmony, for sure! I like the design of their BTE processor, and of the speech processing strategies they offer. But now with the new Nucleus 5 out, just the thinner BTE processor appeals to me. The thinner internal implant is nice too, and the processor is also made of titanium and such. Hm. I don't know! I've already shot off a couple of emails, and have requested an information packet from Cochlear about the Nucleus 5. And I plan on comparing Nucleus 5 with Harmony, and I will continue to talk to various CI users online and so on. I still have a while before I actually get implanted. I know both companies are excellent, and their products work well, so I can't go wrong with either one really.

I have an appointment on the 15th (next Tuesday) with a new local doctor. The person who takes care of the insurance approval process at Rocky Mountain Ear Center, she told me I needed to have a primary doctor (that has referred me to them) and such before she can even turn in the paperwork to get the pre-authorization from Medicaid. Well, gee! I haven't had a primary doctor in years, and really, no one actually referred me to Rocky Mountain Ear Center. A former school district audiologist told me they were an excellent center to work with if I should go down the implant path. And I did my research online, looking at the different centers available in Colorado (and even Boys Town in Nebraska), when I decided on Rocky Mountain Ear Center. Anyway, I made a couple of calls via internet relay and got an appointment set up. Turns out my stepdad's daughter used to go to school with the doctor I'll be seeing on Tuesday, so it's good to know that he's a good person and all.

Hopefully after that appointment, the Ear Center can finish filling out the paperwork for Medicaid and we can get going with the process, that is if Medicaid approves.


Also, my mom gave me more of my audiology reports from when I was in school. Excellent! I haven't closely looked at them yet, but I will soon enough. I'm just happy to have them now, in my file box.


EDIT: Ok, I think I'm still set on picking Harmony, regardless. Did a little more browsing and comparing of both devices on the manufacturers' websites, and I know I'll be happy with Harmony. I'm sure Nucleus is an excellent device, but it's going to be Harmony for me. Nothing against Cochlear. I'll still continue to follow the news and whatnot though.

Uuummm?

Um... My hearing aid's acting all weird. I'll turn it on or try to change settings and it'll beep, then silence.... then eventually sound will come around. But that's unusual for my hearing aid. Makes me wonder exactly what's going on with it. Is there something going on with the on/off and programs switch/button? Or is it just something internal? Hm. Just not sure if I'd want to contact the local audiologist... but what other choices do I have? Hm.

Wyoming Equalitycare

So I did some browsing around last night. I explored the Wyoming EqualityCare website so I could get a good idea of what I can use my card for in terms of medical/health care. Good for 1 preventive/cleaning dental visit, few cavity treatments, any tooth extractions, in patient and out patient hospital visits, some eye care stuff, up to 20 therapy sessions will be covered, etc. I also found the Rocky Mountain Ear Center, Dr. Kelsall and the audiologist Allison all in the list of providers on the website as well, so that's good to know.

Then I tried to see if I could find out anything about Wyoming Medicaid and cochlear implant coverage. This is what I found:

Wyoming Medicaid

Wyoming provides Medicaid benefits for cochlear implant services under its EqualityCare program according to FDA indications. Adults must be post-lingually deafened. Children may be pre-lingually deafened but must be over 12 months old. Coverage is limited to a one-processor system.
Source: http://www.cochlear.org/sys-tmpl/wyomingmedicaid/

Interesting. Of course, I have no idea how old this information is, but it still is a bit of information. I am still going to work on finding out absolutely for sure though on what Medicaid/EqualityCare covers when it comes to cochlear implants.

Oooo!

Email of the day: I have interpreters lined up for the community classes I'm taking at the college. Excellent! One will interpret the dog obedience classes, starting on Tuesday. She's interpreted for me before from 9th grade up, even for some college courses and such. She's an awesome person and I really like her. I'll have a different interpreter for the photography classes on Sundays starting Sept. 20th. Also another great interpreter too. And the college is paying for the interpreters as well. Perfect.

Mail of the day: I got my medicaid card. I wasn't expecting to see it so quickly. Just yesterday I got a letter from the DFS office stating that I am eligible for Medicaid, and then today the card arrived. Whoa. Already I've emailed Rocky Mountain Ear Center to inform them I just got the card, and of what I should do next.

Crazyness

I emailed the person who is in charge of lining up interpreters and any other assistance one might need when taking classes at the college, informing him I was registering for a couple of community classes and would like to have an interpreter. His response? "You should contact (insert 2 names)!" Um, say what? So then I emailed another interpreter and told her of what was going on, and she got back to me, saying she had spoken with another interpreter. They both told me I did the right thing by emailing the college person, and that the one interpreter was confused over his response to me. Today, I got another email from the college person, and finally an interpreter is being lined up. I do have to sign a contract, and had to confirm which courses I was taking for him. Not a problem. I'm registering for Dog Obedience (my dog Bryan, boy he could really learn some manners!) and Introduction to Digital Photography. Now, I'm sure I'd fly through the photography class with no problems, but I thought it'd be fun to take. Gives me something to do on Sundays for about a month or so. And the dog obedience, that should be an interesting experience.

Still waiting to hear about medicaid. Since I did qualify for SSI, I should be able to get medicaid. But as to whether or not medicaid will cover cochlear implants, I don't know yet but I'll find out somehow. Seems like the auditory rehab is already taken cared of for whenever I do get the implant. Excellent! I am quite anxious to get things rolling, but of course, I have to be patient, and wait to get all the information in the mail and whatnot.

Word mix-ups

You know what? Once again, I have gotten 'chicken' and 'tickets' mixed up once again! I was sitting in my step-dad's office with my sister the other day. She was on her computer and had ordered some tickets for a David Cook concert, and said she was just ordering tickets when I asked what she was doing. Of course, I got the confused look on my face again. "Chickens?" I asked her. "No! Tickets for a David Cook show!" Oohh. Whoops. Chickens and tickets do really sound similar, and even look similar on the lips. I mentioned the word mix-up last night to my mom when we were in the backyard on the swinging bench, and she thought it was funny.



And hopefully, I am one step closer to getting the cochlear implant, but we'll see. I'm still figuring things out and trying to make sense of things.

stuff

Still waiting on SSI. My friend and former interpreter for so many years at school, she also received paperwork to fill out on my behalf from SSI (as did my grandmother, and perhaps some other people as well). She told me she read on the paperwork that once the office got her paperwork back, that they would expediate the process. Hopefully, this means something! We never got all this extra paperwork the first time I tried to apply (shortly after graduating high school). I just did the initial applying, sent in a few of my paycheck stubs and that was it. Denial letter came several weeks later. But this time around, everyone is having to fill out some paperwork for me. I really do hope this does mean something. But we will find out soon enough I suppose.

Today, I think my ear is plugged. I put my hearing aid on and didn't really notice anything sounding funny at first. But when I put the ipod on and start playing some music, it sounded different and odd. Checked the hearing aid and earmold and tubing, no blockage or moisture. So there's something funny going on with my ear. Experiencing tinnitus today too. Sucks! But since I'm at work right now, I can't do anything. Ipod and hearing aid both sitting on the desk, I'll just suffer through the tinnitus as I get my work done.

Chat at HearingJourney.com tonight. Yay! I completely forgot the chat last week, as I was still in shock over the news of Michael Jackson's death. Yes, his death has affected me. I've loved his music since I was a little kid. He was the first real musician I started to listen to and really got into (long before the days of Hanson). I used to sneak into my parents' room just so I could borrow my dad's copy of the Bad album and listen to it for a while. My sister and I used to watch his Moonwalker video quite a bit. I remember just watching Moonwalker and being really fascinated with his dance moves, wondered how the heck he could do the leaning dance moves in Smooth Criminal without falling onto his face, the bizarre video he had for Leave Me Alone and loving the fact he had a pet monkey! Even today I still enjoy his music and videos and dance moves. Michael Jackson was a music genius, that's for sure. I will definitely appreciate his music more now than I ever have.

SSI, Airport, etc

Last Thursday, my aunt and I flew out to Mississippi. Flying out, I had no problem. On Monday as we were going through security check at the Gulfport airport, I had my hearing aid hanging in front of my ear instead of resting behind my ear. Some of the security personnel noticed this and pointed it out to me, wondering if it was a bluetooth device. "No, it's my hearing aid." "Oh, ok, come on through then." That's the first time I ever encountered security questioning whether I had a bluetooth device or a hearing aid on. It kind of made me laugh.


As for SSI, well, we got more paperwork to fill out! I myself have to fill some out, my mom does.. As do my counselor. So I'm sure Dr. Kelsall and the audiologist at Rocky Mountain Ear Center are having to fill out some paperwork as well too. Fun stuff, all this paperwork to do. And my mom's been trying to get a hold of a local disabilities lawyer who specializes in SSI/SSDI processes or whatever. It's possible that he just may be out of office for a while, who knows. Mom's left a message on his machine though, so hopefully we'll hear something from him.

WSD Archive Website

All right! I managed to find a version of CuteSite Builder to use to make the Wyoming School for the Deaf Archives website. I started the website oh 2 or so years ago, and for a while I did actually focus on it and work on it. But since then, I've seriously have gotten sidetracked, it's not even funny! But now, I'm getting back on track. Afterall, I did pay for the web domain and for the hosting (which I'll have to renew this coming November I believe...). Anyway, now that I have the site builder, well it'll be smoother and easier on me. Doing a website in full fledged HTML is time consuming, and well, my HTML knowledge isn't as good as it used to be. And there's also the fact that webpage design seems to be changing constantly, with XHTML, flash, java scripting, CSS and all that jazz. Say what? Um... pft how about I just use a site builder? Yeah. And with 1 GB USB jump drives, I could possibly save the entire site on 1 (the current site is saved on a 256mb jump drive with no more room for additional files).

So the current website will definitely be renovated. I'll even play around with the Coppermine gallery and change the layout for it. I may even create a youtube account specifically for this website, as I do have a bunch of footage of random events in relation to the Wyoming School for the Deaf. I'll attempt getting in contact with those who have attended the School for the Deaf and see if they have anything they want to contribute (info, articles, photos, etc.) and go from there. As for news articles, I have plenty! I'll double-check with the current Star Tribune editor and make sure it's ok I use their articles. I'm sure it'll be no problem, as long as I credit the Tribune, which is easy. Any articles that are already on the Star Tribune website, I just link to those. Anything older, I publish onto the website with a link to trib.com since the Tribune is the source.

Now if I can just remember the plan I originally had for this website. Well... I'm not even sure where the original jump drive is. Oh that's not good, I better find it! All of the photos are on it. Hopefully it's been in my desk drawer all this time, but only time will tell.

SSI

Had my appointment today to apply for SSI. I showed up, and sat while waiting for my name to be called. Of course, I never did hear my name being called, another woman thatw as also waiting asked me if I was Meghan, then told me I had been called. Oh! Made my way over to the desk and sat down. From there, the SSA person proceeded to ask various questions and getting information and stuff off his computer. Back and forth, questions and answers (and having him repeat what he said a few times as he was quiet and I had a hard time hearing. At one point, he had to turn the computer screen so I could see a doctor's name as I thought he was saying Dr. Grit or Grint or something when really it was Green). Gave him my hearing test results (copies, of course) to be included in the file and all that stuff. He said as long as I don't make over $980 a month, I could qualify. I'm at about $850 average on a monthly basis, as long as I don't actually work up to 29 hours a week (I was approved to work up to 29 hours a week in January, but I have never made it to the full 29 hours yet as I run out of things to do at work, so I average 25-26 hours per week). He says he'll get everything sent off to the Cheyenne office, and they'll make their decision within the next 60-90 days.

This past week, I was emailing a deaf friend who had been through the SSI process. Was nice to hear from her and get some feedback. Hopefully things will work out. I'm just not going to think too much about this, I'll just stay focused on other things, keeping busy.

Sidekick LX 2009

I got my brand new Sidekick LX 2009 from T-Mobile yesterday. I was at work when I got the email from UPS stating they had delivered my package. After receiving that email, I was motivated to get my work done as quickly as possible so I could run home and play with my new "toy". I was so excited when I opened up the packaging, really truly excited. I have never upgraded to a new device through a mobile company before, ever. I opened up the box, and took the LX out of the plastic coverings and basically dumped everything else out of the box. Wow! It's a really nice, slick device. A definite improvement over the Sidekick 3, which I've used for over 2 years.

(click on the photos to see them in full)


I noticed there wasn't a new SIM card, so I wasn't too sure if I was supposed to use the old one from the SK3 or not. I got onto my desktop computer and logged into my.t-mobile.com and used the chat support to get that question answered. "You just use the old SIM card from the old device and it'll work!" Awesome! Transfered the SIM card, installed the battery and the new teeny tiny micro SD card, plugged the LX into an outlet and powered it up. Got the LX registered under my T-mobile account name and all that jazz, and I just played with it for a while. Man it was one noisy device for a while, as I went through the settings to turn off the sounds and use the "subtle" alerts (where the trackball flickers for new messages, etc.).




the micro sd card and a nickel, so you can get an idea of the sizing of the card, in case you've never seen a micro (I was shocked to see how tiny it was!).


difference in battery sizes, and the new battery is supposed to last longer.

I'm really impressed with the new LX! A huge improvement over the 3, that's for sure. The LX has Facebook, Myspace and Twitter applications, all which you can use for free now. On the 3, you could download the Myspace application (it didn't have Facebook or Twitter so you'd have to go onto the internet to use those) and pay a monthly fee. The instant messengers are all upgraded/updated on the LX. I can now see and use all of the standard smilies on MSN now (before, my mom would use a random smilie on her side on the computer, but it'd show up as symbols on the SK3 for me). There is 3G capabilities on the LX, but of course Wyoming doesn't have the 3G coverage so I'm still using the same networks as before, but that's fine with me. Changing of text sizes on the LX now, small, medium and large. Mine's on the medium setting. Camera has been updated, and you can now take short videos with it. Hey, you can even view videos on Youtube on the LX! Wow! I'm still using the exact same plan on the LX that I was using on the 3, the Sidekick unlimited plan.

Only downside is that there's no Relay applications on the new LX's just yet. I did shoot off an email to i711.com about this and asked if they were going to have the application available soon enough. I never did use the relay on the SK 3 really, but sometimes you just never know when you're going to need the relay, so it'll be nice to have i711 on the new LX (the previous Sidekicks all should have IP-Relay and i711 applications, it's just the newest versions that don't have them just yet).

Looks like I can now text photos from the LX as well. Hm! I haven't tried this out yet, but I will someday.

Overall, I'm really impressed with the new LX 2009.

SSI stuff

I'm still amazed that there's no ossification at all in my cochleas. Still. I just can't get over the fact!

Anyway, I basically ramsacked the computer room downstairs looking for the SSI stuff that I had gotten in the mail a couple months back. I did fill out the disability report stuff at the Social Security website in February and sent it in, and they sent back a notice with an appointment time. Of course, then, I didn't take up on the appointment and had it canceled. But today, I got online and looked real quick for a phone number, then started up a i711 relay call online. The automated stuff took a while to get through, then finally the relay operator got a hold of a live representative, and went from there. Appointment has been set for May 22 at 12:45 p.m. to fill out an SSI application, to go over the disability report that I sent in, and to go over the stuff they are asking me to bring in. We'll see how this works out. I'm going to do as much research as I can, and try to find people that have been through the process so I can get feedback from them, so that I'm not all completely clueless of what I'm doing with the process.

More stuff

Leave it to me to forget stuff, ha. :)

I'd still rather have the left ear done though, just so there's sund
coming into that ear. If it takes a while to make sense of anything, so
be it, I'll work at it.

Now, just need to figure out insurance and such. He's surprised I'm not
on any medical assistance program of any sort from Wyoming already with
the very profound loss in the left and severe to profound in the right,
and encouraged me to check SSI again. Now, if we know of anyone that
could help walk me through the SSI steps, great. I'm not even going to
ask vocational rehab, again and again Amy has not been of any help. if I
could afford the $360+ a month for the BCBS Wyoming health insurance
pool, I would have definitely gone that route. But since I can't, will
definitely look into SSI some more. He says he'll be more than happy to
provide the proof of my deafness to them. He also says the CNI can get
the implant device donated, and he himself would charge me for his part
as the surgeon, and would work with the hospital on bringing their costs
down if I still can't get the insurance.
--Meghan

Todays appointments

We found Swedish Medical Center and managed to find a parking spot in
the garage. Went inside the building and made our way to Rocky Mountain
Ear Center. I checked in, signed some papers and waited. Soon enough,
Allison took me back for the hearing test. We talked a bit on the
insurance situation, yada yada. Did the hearing test. I did a lot better
this time than the last time, since I had ....Shane..... adjust the
hearing aid almost 2 years ago. But I'm still in the eligibility
criteria. Sentences I did ok with, as I guessed and whatnot. Single
words, though, not so well haha. And as always, no results for left ear.
We talked a bit more on insurance and ssi, and of the different
implants. Then I was done with her.

We went down to the cafeteria quickly, for a quick lunch. Got lost for a
bit but managed to make our wa back to the Ear Center. Another
audiologist checked my ears pressure, then I waited some more wit
grandma in a room. Nurse came in, answered some questions for her and
she did a few quick balance tests and such. Then waited for Dr.
Kelsall.

Came in and recognized me! Took him a while to realize that it was my
grandma with me and not my mom. Shock! He said the cat scans of my ears
looked great! No ossifications or blockages or anything. That was a big
surprise. All these years, everyone has suspected thered be some
ossification in my cochleas, but there isn't any. Wow! Kelsall says we
could implant either ear. Right ear would definitely get the best
results quickly, the left year could take a long time to get any real
benefits. We also talked of the different devices too. He says he's seen
more internal device failures from Advanced Bionics, even nowadays, that
the fail rate is 1/100 where with Cochlear its 1/1000. Hm, makes you
think. Allison says Cochlear has a really good internal device, but the
external does tend to break, and Advanced Bionic's external device is
excellent.

I'll have to do some serious thinking. I'm stil intriqued by the
Advanced Bionics evice, but will definitely contact both companies and
get feedback from them.
--Meghan

Preparing

I'm at work right now. Have been for a bit over an hour, which is unusual for me since I'm NEVER at work at this time. I don't normally get to work until after noon. But today, since I am leaving for Denver, I thought I'd come in earlier just to get everything taken cared of before I leave. Make things easy on my supervisor for while I'm gone so she doesn't have to do as much for me (she won't have to worry about calendars, they're all done through Thursday!). Still waiting on the rest of the public records, la de dah.

Funny, I forgot my iPod when I left the house this morning, oh well. While driving the dog to the vet, I had to listen to him whine and cry from the kennel in the back seat the entire way. Such a baby, he is. He does not like being in the kennel. But, the kennel is safer for him. And at work, I'm listing to everything going on around me. Computers, people typing, doors opening and closing, people walking by, the fan/air conditioner? Or maybe that's the computer fan I'm hearing. I can't tell. Normally, all these sounds are distracting for me, distracting me from my work. But today, not so much, probably because I'm still not fully awake.

While I'm waiting for the public records, I'm sitting here, lurking on hearingjourney.com a bit, and pondering. Is there anything I should ask Dr. Kelsall when I see him tomorrow? Hm. Then I remembered the incident from last year when we were in North Carolina, when we encountered this deaf gentleman with the bone conduction hearing aid. Would this little test be worth mentioning to Dr. Kelsall, how I did hear something with the bone conductor behind my left ear? I have no idea, but it couldn't hurt, right? I am still hoping the left ear can be implanted, that there is some hope of hearing something with the left ear. I've already printed off the April 22, 2008 "Whooaa..." entry from this blog to share with Dr. Kelsall. And I'll have paper with me in the car so I can write down any more notes or questions. I'll have my sidekick on me, so I can browse back through blog entries and see if that sparks any more thoughts that I should mention to Dr. Kelsall, etc. I'm also bringing the CNI Cochlear Implant Assistance Program application, and I'll probably be asking him about that as well, and if he knows of any other funding options I should consider. And possibly, Allison might have an idea of how I could deal with the local audiologist situation (my refusing to go back to scamming audiologist, etc.).

Coming up...

My appointment with Rocky Mountain Ear Center is May 5. Hearing test at 11:30 a.m., and Dr. Kelsall at 1:30 p.m. to go over the CT scan results. Awesome! My grandparents will come and get me on Monday after I'm done with work, then we'll head towards Denver. Do as much driving as we can, spend the night somewhere, then get to Denver for my appointments on Tuesday. Then after the appointment, we'll leave Denver and start heading back as much as we possibly can.

Yesterday Rocky Mountain Ear Center called our house. I saw them appear on our caller ID, and debated whether or not I should answer. I decided I would just let the answering machine pick up. The machine picked up, and from there, it seems to be an automated message being left for me. I listened to it, but could barely make out what the message was. The time of the appointments I was able to hear, but the rest of the message I didn't get. Mom told me they just wanted to confirm the appointments. Ah, ok!

Darn it. I missed the hearingjourney.com chat last night. Completely forgot that yesterday was a Thursday. Oh well, there's plenty of other Thursdays to catch the chat.

House

I've actually missed all of the current season of House. I have watched seasons 1-3 on DVDs, but haven't managed to catch up to the current season yet. But, when I discovered last week that last night's episode of House would be dealing with deafness and cochlear implants, I had my Nebraskan friend remind me to tune in, just so I could catch this episode.

I have to say, last night's episode was very interesting, although not entirely accurate with the cochlear implant issue. A standard hospital doctor wouldn't be telling a standard surgeon to go ahead and implant a teenager while he's still in the OR. You have to go through testings and evaluations before you can even get a cochlear implant, to make sure the cochleas and nerves are intact and all that jazz. Also, one's implant wouldn't be activated right after surgery and that person wouldn't right off the bat be understanding speech. It was just a bit odd how they played out the implant deal. But it was interesting to see they used the Harmony device from Advanced Bionics. And for the teenager to rip the implant out of his head, that's just not right either, as the implant nowadays is stutured in so it doesn't get dislodged, and the incision in the skin is stitched/stapled up.

It's weird, because usually the people involved with creating House do their research and even consult with professionals about certain illnesses, disabilities, medications, procedures, etc. so I'm surprised at the amount of inaccuracies with last night's episode. Did they just not do a thorough research or something? Could they not get in touch with cochlear implant specialists? Hm. But it was still interesting to watch.

Figuring stuff out

I just shot off an email to the University of Wyoming audiology department asking if they know of any reputable audiologists in the Casper area. If there aren't any, I'll just go back to them, and I mentioned that in the email as well. I mentioned of my audiologist's scamming customers and such, and that I am working on getting a cochlear implant and so on. Hopefully I'll hear back from them soon enough. I could do with a new earmold. My ear has been awfully irritated off and on for months now and I'm sick of it. It was my decision to go back to the colored molds (school audiologist always thought I had an allergy and ordered the non-allergic molds for me, but it was more of a problem with the top crook of the ear that would be sore from the earmold, rest of the ear was always fine). Ever since I got this current mold though, it fits, but my ear has been itchy and sore off and on.

Sidekick LX

There's a new Sidekick LX coming out soon, May 13. Awesome! I still haven't upgraded through T-Mobile yet, so I'll have to start saving up and upgrade to the new LX. Yes, the Sidekick 3 still works well and all, but the track ball has definitely gotten a bit funky on me. And, it'd be nice to have a newer device that is more up to date. I've been happy with the plan and service I've gotten through T-Mobile on my Sidekick 3, and have been extremely happy with the Sidekick 3, I wouldn't want to switch to a completely different device. I have looked at EnV's, but no thanks. And Blackberry's just aren't for me. I'll just stick with the Sidekick for EVERYTHING (minus calling/voicing). I can't wait!

Vaccination project

I'm pretty sure I mentioned that the Texas Childrens Hospital was working on a vaccination project and they interviewed various families that have been affected by illnesses that could have been prevented by vaccines on here. I can't remember for sure, exactly... but anyway. On Tuesday, I came home from work and came across a box on the front door step. I remebered I had ordered some stuff from the ADCO hearing products website, but thought the packaging was too big. I completely forgot about the vaccination project. Took the box in and was surprised at how heavy it was. I opened it up, and there's 8 copies of the book "Vaccine-Preventable Disease: The Forgotten Story". Wow! I flipped through it, and found my story in there. I read through the whole book and was impressed with it. I really do hope people read this book and realize just how serious the consequences could be if they don't get their children vaccinated against certain illnesses. Even I learned some new stuff from the book that I didn't know of before. A very powerful book, with powerful stories from different families affected by different illnesses (chicken pox, polio, different types of meningitis, flu, etc.).

http://www.texaschildrens.org/carecenters/vaccine/Default.aspx I would assume the book will be available for order/purchase from this website soon enough. They did an excellent job.

Meningitis vaccination reimbursement, AB stuff

Advanced Bionics just recently redid their website (www.bionicear.com), and I happened to be lurking around on it while I'm at work (seems I do most of my research while I'm at work). Anyway, I was just randomly clicking links, looking at different stuff. And what do you know? I came across a page in the Customer Support area for meningitis vaccination reimbursement. Advanced Bionics will reimburse AB users who have gotten the pneumococcal meningitis vaccination that wasn't covered by insurance (paid for out of pocket). Now, this is good to know, for myself. I have no idea how much the vaccination would cost, but just knowing AB will reimburse it is handy. I'll have to keep this in mind as I progress along with the implant route.

I knew there was a risk of meningitis for those who get the implants, but I never knew what specific meningitis. The other day I just happened to be randomly research different meningitis types, just for my curiousity, and it occurred to me that pneumococcal meningitis would be the one that an implantee could possibly be at risk for. And now, having stumbled across AB's reimbursement information, well it all makes more sense in my head now.

Here is the information, in case anyone with the AB device is interested (I have no idea if Med-El or Cochlear does anything like this).


Also, just the other day, I got to thinking if AB had different processor options for the Harmony device. I remembered Auria having a battery pack option, where the battery pack could be clipped to your belt or something like that, and the BTE would be smaller and lighter. Harmony currently doesn't have something like this, but AB is working on alernative power options for the Harmony (similar to the battery pack). That is also good to know! I just wondered, since my right ear does tend to be sensitive to weight and such. Ever since I got the Phonak Supero hearing aid, I've had sensitivity issues with the weight of the hearing aid (especially when the FM boot/shoe is on). All of my previous hearing aids were smaller and used the size 13 batteries, while the Supero uses 675. And since I do tend to pile up enough stuff onto my right ear almost on a daily basis, it does tend to hurt after a while (Supero hearing aid + Hatis epic ear hook + glasses all on 1 ear, ouch). I just have no idea how my ear would handle the weight of the standard Harmony BTE, so it's good to know there will soon be alternative options. I guess you can say I have wussy ears.

Sound moment

I got home from work and was just hanging out upstairs, watching some TV. My mom has been sick for a few days now, and has been at home all this time. Well, today, she took a hot bath to warm her up (she's had the chills). For a while I didn't take notice of anything sounding weird or unusual, as I was watching TV. Eventually though I made my way down the stairs so I could get some food for my dog (the bucket of dog food is kept in the storage room downstairs, it's hidden away). That was when I noticed the sound. I couldn't figure out what the heck that sound was. But it was louder when I got close to my bathroom downstairs, but then it clicked. 'Oohh, is that the bath tub running upstairs?' What do you know, it was! I myself prefer to take baths over showers and bathe quite a bit, but I have never heard the water running from the bathtub faucet as I was always deaf every time (I always take my hearing aid off and leave it on my dresser in my room before even going into the bathroom to take a bath).

Appointment Set!

Ok it's set. The hearing test with the CI audiologist and the appointment with Dr. Kelsall has been SET for May 5. 11:30 a.m. for the hearing test, then I'll see Dr. Kelsall after the testing. Have already informed my supervisor of this appointment too.

Blah!

It's times like this when I really wish my mom and stepdad didn't work for the floral industry. Rocky Mountain Ear Center's soonest opening for me to get a hearing test and to see Dr. Kelsall is May 5, which I really want to take. But there's Mother's Day, high school dances/proms and graduations, and even Memorial Day all in May going on, which stepdad NEEDS to be working, and mom will need to be working too (she doesn't work directly for the floral industry but she does help stepdad out by doing some of the floral work at her store). Mom's telling me maybe July to have the appointment. I feel that's too far off. This implant is real important to me, and I want to keep moving along if I can, which means getting stuff like the hearing tests and whatnot done as soon as possible. The sooner I get this stuff done, the sooner I can apply to the CNI Cochlear Implant Assistance Program, and the sooner I can get a decision from the CNI. I hate that I have to revolve around their jobs.

If I could, I'd just drive to Denver and take care of it myself. But I'm still too much of a chicken. I'm sure I could handle driving in Wyoming, but getting closer to Denver I'm sure I'd start to have anxiety issues. Just the thought of driving in Denver scares me. If I could get a friend or even another relative to help with the driving along with a GPS navigator to tell us where to go, great! I just don't want to have to rely on mom and stepdad so much for any Denver transportation. I'd take a bus, then have someone in Denver drive me around, but bussing it can be expensive (nearly $200 per round-trip basically). BLAH! There's going to be many trips to Denver throughout the process, I know that. But, I don't want to have to hold off appointments for so long just because of mom and stepdad's jobs. My job is more flexible, as long as my time off doesn't interfer with the supervisor's time off (we both can't be gone at the same time). Hopefully I can come up with another solution to this transportation problem (have already informed grandparents of the CT scan update, and emailed a friend [she's offered to drive me to Denver if I can drive myself down to Cheyenne, hm!] about it while asking for an email address of another friend who has gotten her implant from Kelsall, they might have some ideas). Will talk more with mom about this later, but blah.

Oh so frustrating!


(EDIT) You know what.. I'm just going to go ahead and take the May 5 date for the hearing test and seeing Dr. Kelsall (I've already emailed the Ear Center, AGAIN). I can get myself down to Cheyenne, and meet a friend there and the 2 of us will go to Denver together. She works for the state department of education, and works with the deaf kids/teens, and has plenty of experiences with kids getting cochlear implants. She fully understands the process, and has offered to drive me for this appointment (I emailed her updating her on my progress, scheduling conflicts and for an email contact for a friend who has gotten her implant from Kelsall). I already talked to my stepdad, and he says I should go for it, that I can get myself to Cheyenne just fine. It's mom that will probably be hesitate but, she'll have to realize I am 23 and growing up, and I can't be dependent on her every time. It would be nice if mom could be there so she knows what's going on and what Dr. Kelsall says.. But I'm sure I'll be taking notes somehow so I don't leave out anything. I need to be able to do things on my own without being so dependent on my mom, so be it, even if that means grabbing a friend for some of the trips.

CT Scan

Well today was quite an adventure! Right at 10 a.m., my Sonic Boom alarm clock went off, causing my bed to vibrate. Whooooaaaa. Shoved my dog off (he was on my legs) and got up and going. Got the dog outside, and HOLY CRAP! SNOW! No! Got dressed and proceeded out to my car to clean the snow off. My snow brush wasn't doing the job so I got a broom from the garage. Much better! Went back inside, got the dog down in the kennel, made sure I had everything, including the money to pay for the CT scan. Finally I was on my way.

I drove like an old lady, driving at 20 for the most part. It's that bad outside. Visibility is bad, you can't see very far. Finally made it to Rocky Mountain Hospital/Clinic in McMurry Park, and went in. Filled out some paperwork, paid for the scan, and was taken back to the CT room. The radiologist techniction explained to me how the machine worked, and of how I should be laying still, yada yada. Ok, cool. Took hearing aid off (left my glasses in the car) and laid down. He put these little pillows next to my ears, and strapped my head down, then went into the computer room. Machine moved. I tried to watch the swirly x-ray go, but I couldn't. So I just focused my eyes on the ceiling instead, trying to keep my head as still as possible. Five minutes and it was all done. They will be sending the CD disc of the CT scan images via Fex-Ex to Dr. Kelsall.

Another step ahead in the implant process done.

CT scan set

Got the CT scan appointment set! I relay called the imaging center to make sure they got the doctor's order for the scan, which they did. Then we went ahead and set up an appointment. Monday, the 23rd at 11 a.m. Wow, that's pretty fast. So now I'll have to go to the bank and make a withdrawal so I can pay for the scan. I would think I have enough in there, I can't remember what my latest bank statement from last month said. And I can't check it online as I don't have an online account with this particular bank. Maybe I should run down to the bank downtown and check and make the withdrawal, then come back to work and finish everything... I doubt I'll get off work before 5 as that is when the banks usually close.

I really wasn't expecting to do the scan this soon, but hey the sooner it gets done, the sooner the doctor has the results and that sort of thing. Wow.

Progress updates

Oh I finally got a response back from the woman at the Gift of Hearing Foundation. Updated her on my going ons and that sort of thing. She's glad to hear I'm going to Dr. Kelsall for the process, as he's the one who set up the CNI Cochlear Implant Assistance Program, and she says she'll even contact someone at the CNI about me and find out what the total costs would be if they donated the implant and such. Would be helpful to know the actual costs, and figure out how to get all that paid.

I was in the chatroom tonight at hearingjourney.com (this is Advanced Bionics support forums), and one of the Advanced Bionics audiologists was in there. She informed me she had some info on funding resources or something like that, and that she'll send the information to me tomorrow. She's also going to see if she can get me in contact with cochlear implant users (probably in the Denver area) that have gone through the Rocky Mountain Ear Center and Dr. Kelsall, as I'd like to hear from them (I have a friend down in Cheyenne that's been through Dr. Kelsall and I've been meaning to get her email from a friend...). Just getting feedback from other users is always great, and would be even better if I can talk to others who have been to the same doctor/audiologist.

Tinnitus moment

Oh! I forgot to mention this. The other day.. I forget when exactly.. But anyway, I was at home, just hanging out. The TV was on, but I also had my Acer Netbook out and running in front of me on my lap. Was just fooling around on Facebook like I often do in the evenings. All of a sudden, my hearing aid started feedbacking, or so I thought. I messed with the earmold in my hearing aid to get rid of the feedbacking. That didn't do the trick. So then I just turned off my hearing aid and took it off so I could look at it closely, see if there were any holes in the tubing... But, the feedbacking sound continued. Oh, it's not my hearing aid, it's all in my head! Was really strange, I have never heard the hearing aid feedbacking kind of tinnitus before. It only lasted a few seconds and it was gone. But it sure did get pretty loud. Normally tinnitus sounds like buzzing or ringing, or even sirens for me. But at the moment, it sound exactly like my hearing aid feedbacking.

Interesting...

Well! I decided I was going to vacuum the carpeting throughout most of the house today... I had my iPod on, listening to music as I vacuumed up the dog hair and dog toy guts off the floors. Made my way down the stairs, vacuuming each step. Finally got downstairs and continued with the vacuuming, jamming to the songs on the iPod. Soon enough, anytime my right ear got close enough to the vacuum as I bent over with the hose to suck up any more toy guts and random junk from hard to reach spots, my hearing aid turned off! What the heck was up with that? I have never experienced this before. It did it again a few more times as I finished the vacuuming job. I don't know if it's a telecoil thing and there being something in the vacuum cleaner that messes with it, or if it's the hearing aid in general freaking out. Like I said, never experienced this before. Was quite odd though!

Insurance update

I understand that you are interested in the Wyoming Health Insurance Pool coverage and are wanting to find out if a cochlear implant would be covered. Pre-existing conditions are not covered in the first 12 months unless you have had previous insurace within the last 90 days. If you meet the low income requirements and qualify for the coverage, the cost for the plan would probably be either $368.20 or $504.20 per month, depending on the plan you choose. After you have been on the coverage for 12 months, a precertification would have to be done in order to deterime if this specific procedure would be covered.

There is just no way I can afford the $368 plan. That is like one entire paycheck, and there is just no way I can get by the rest of month with the 2nd paycheck alone to pay all my bills and car insurance, oh no. That's just not possible for me. Maybe if I had another part time job, MAYBE. But I haven't had any luck of finding a part time job that will be flexible enough with my current work schedule and such, and be willing to accomodate my deafness (no phones, not having to deal with customers, noise-free or as little noise as possible, etc.).

Looks like the CNI CI Assistance Program and fundraising is my best bet right now, that is if the CNI does accept my application. I shall be proceeding with the CT scans, new hearing test and whatever else needs to be done so I can apply to the program.

Update

Got a response from Rocky Mountain Ear Center today!

Hi Meghan,

I have received your medical records. Dr. Kelsall said that he would see you at no charge after you get your ct scan. When you decide where you will get your scan and decide how you will pay them, please let me know and I will fax ct scan order to them.

Thank you,

Johnnie

That's awesome. So now, I'll probably call the imaging center again, verify the costs, then work on saving up the money for the CT scans. I just sold another item from my half.ebay.com store, so I've made quite a few sales in the last 3 weeks or so, which is awesome. Mostly it's the DS games and DVDs that are going, but hey that's great! That's a little money going into my bank account.

I also stopped by the local BCBS Insunrance office, and talked with the receptionist about my phone call predicament. I left her my email address and she'll give it to the person who was researching coverage plans that covers the cochlear implant, so hopefully I'll hear from the representative soon enough.

Am still very slowly working things out, but I'm working on it! And I'll keep working on it.

Phone call frustrations!

Oh how frustrating is this! The Blue Cross Blue Shield insurance guy called back the other day, and left a message on the machine. I have played the message a couple of times but I cannot understand the message. I couldn't catch his name or the number he left, or anything else he said. So frustrating! And I'm the only one at home until the 19th. Right now, I'm on a relay call with the BCBC of Wyoming, and they're going to try to get me in touch with the representative that has been researching affordable plans that covers cochlear implants, but blah. The call got rerouted a few times and I ended up with someone from the Cheyenne office. Oy! So incredibly frustrating. I hate that I can't make sense of the message, I hate that I'm making this Cheyenne representative do "extra work" just because I couldn't get a name of the representative doing the research. I'm surprised the Relay Operator is still handling this call haha. It's been over half an hour now, and I'm on hold yet again while the Cheyenne representative calls the local office.

If I could at least get the stupid Cap-Tel phone to work at home, I'd try using that to make phone calls. But no, ever since the Qwest phone company came over to the house 2 years or so ago and did something, none of MY phones have worked. I've tried plugging them into different phone outlets throughout the house and nothing. I don't know why. I have two different phones that are for the deaf (the Captel, and one from PlanetAble), and they both don't work. Most certainly isn't the phones, it has to be the phone line. I've mentioned this to mom and stepdad several times in the last few years but nothing has been done.

Well, at least I finally got our home number removed from Omaha Steak's call list. They have been calling our house at least 2 times a day on a daily basis. No one in the house ever answer their calls (we just pick up then immediately hang up on them). I went online to the Omaha Steaks website, and found an email address. Shot off an email and requested they stop calling us! They removed the number from their list, finally. No more obnoxious calls from them.

Oh, off hold. She's telling me I can stop by the local office and talk to them. Ok. I'm not exactly sure where this street is, but I can look it up, no problem. Oy. Will have to look up the address online, and try swinging by sometime before going to work tomorrow or the next day. Maybe I can get them to start emailing me information from now on, instead of leaving messages on the phone. That would be so much easier for me. Golly!

Well, that relay call lasted almost an entire hour. That's the one thing I don't like about relay calls, they take longer.

Medical Records!

I have finally received my medical records from Sheridan hospital. And they sent EVERYTHING, and I do mean EVERYTHING. I requested for any files from Nov. 1987 that documented the meningitis.. but they also included my birth records, but hey, that's completely fine with me. Was interesting to go through all the notes. Most of the records are from when I was hospitalized and treated for the meningitis. Very interesting stuff! Even my mom went through the notes, and "relived" the experience. Made comments of some of the notes ("duh" kind of comments, was kind of funny). I'm glad to have the records now. Now I have every detail of the meningitis episode, all the blood works they did, CT scan results, medications and treatments, every diaper change, EVERYTHING.

Now, will have to get a file box to store my medical and audiological records in, so they don't get damaged or misplaced.

Audiological Records!

Right on! I got the audiological records from the UW Audiology Center in the mail today. I was rather excited, as I have never seen any of the testing results from them. There's records in there from 1988, 1994, and 2000 (1988 when they accurately tested my hearing loss, 1994 for a new pair of hearing aids, and 2000 for the Claro hearing aid). That was pretty fast. I read through the notes, I was really interested in it. Great, 1 set of records to put in my files! Now, to get the hospital records of my meningitis fiasco. The ABR results are included as well, I've never seen what an ABR mapping or result looks like. Very interesting, indeed!

Went over to the deaf school library to visit with Jo. I came home from work first, and grabbed the 2nd informational packet of AB's Harmony implant. I already had 1 packet, but AB sent me another packet. I don't need 2, and the spare one has been sitting in the basement all this time. Finally, I got around to taking it with me to the library. Now Jo can catalog it. She says she doesn't have any information on the new implants in the library, so she's happy I brought in this spare packet. Was fun talking with her for a bit. She was telling me a bit more of WYHI that's happening on Friday, and I'm planning to go, just for socializing. Any chance of being around other deaf people, kids or adults, I'm going to go if I can! Will have to go to work a bit earlier on Friday, and get the main stuff out of the way, go to WYHI (this time it's in the afternoon, instead of starting at about 10 and going on until 2ish), then return to work to finish the rest of the calendars and possibly even the fire calls.

Insurance Info Update

Woot! Finally heard back from the insurance guy that was doing research.. He called and spoke with my mom and mom shared the info with me.

The personal insurance through BCBS, that covers the implant, would cost me over $700 a month.... errrrgh.

But he thinks it might be possible to get me on the disabled insurance plan, and that one would be $150 a month (that I could afford).. but he's still doing more research.

Even if I did get the insurance, because deafness is a preexisting condition, I'd have to be on the plan for 9 months before I can even ask them to cover the implant.

I'll keep waiting to hear from him, and figure stuff out. And I'll still try some fundraising so I can get the money necessary to finish out the tests and stuff (Ct scans, hearing test, whatever else), doctor's visits and all that jazz, and even apply to the CNI CI Assistance Program as well (just in case the insurance plan doesn't fall through).

Awaiting another response from him.

Still browsing options

I'm still trying to figure out how to get fundings for the implant. Some folks at hearingjourney.com encouraged me to have the local newspaper do a personal interests story to generate interest from the public. I still need to discuss this with my supervisor, see what she says.

I know PayPal has a Donation button, so you can make a button, and post it wherever you please to accept donations from interested individuals who might like to donate. I've considered that, and even made up a website. I have no idea if that would get me any results, but who knows. Couldn't hurt to try, right? The website is: http://www.wyomingdeaf.com/ci/index.htm
I'm also selling items through my half.ebay.com store to earn some money for the implant fund as well (so far, have sold 1 item yesterday, and I am still slowing adding more items to the inventory). I may even auction items on eBay.com, items that I can't sell through half.ebay. All fundings I earn somehow will go directly into my savings account, and I'll only use that money for anything related to the cochlear implant process (CT scans, hearing tests, any other testings, the actual procedure, and follow-ups). I also have a small portion of each of my paychecks being deposited directly into my savings account (my paychecks average around $300, and since I have bills and other things to pay for, I can only afford to do maybe 15-20% of each paycheck deposited into my savings).

I have contacted different organizations for ideas... Not very many useful advice or results yet so far, but I'm still browsing and figuring things out.

Do any of you guys have any ideas?

She'll never truly understand

and I'm offended all over again. My mom is just so infuriating! She's hopeless when it comes to discussing options in regards to MY deafness. "You should consider ALL the options out there, not just one." Uh I have thank you very much, and it's still a NO on the hair cell thing. "You get that "being deaf has its perks" thing from Jo!" No I do not. I've discovered the "perks" ages ago. Jo just UNDERSTANDS where I come from and even agrees with me, whereas mom doesn't. Jo's been deaf all her life, so it's just a lot easier to talk to her about anything deaf, and with my mom it's just impossible. "I understand being hearing would be a lot to take in after years of deafness" uh exactly how would one who might have gone through the hair cell regeneration get a break from HEARING if they needed one? "See, with the implant like that lady on the HBO show, she took too many breaks and it didn't work for her!" Duh, not EVERYONE is going to be like her, everyone progress with the implants in their own way on their own time schedule. But breaks would still be necessary, to let the brain sort out what it just had to deal with. That's it, I'm done discussing ANYTHING with mom about this. All she does is just offend me (even though she doesn't mean to) and infuriate me, no matter what.

I even told her if there was absolutely no hope of having the left ear implanted, I would do the right ear "oh so you'd risk losing what hearing you have left?" Yes. If the implant can help me to hear better than the hearing aid, great. I'm perfectly aware of the risks. But with technology getting better, the losing whatever hearing is left risk is not as big as it used to be. I am willing to take that chance. "What if the implant doesn't work?" so be it. I'll deal with it. It'll be tough but I'll deal with it. Even the CI audie in Denver said there's a really good chance of the implant working for the right ear (not so sure of the left ear, when we did the hearing test it was absolutely 0 responses.. could be cause of ossification, who knows). I'd rather take the audie's word over my mom's on chances of it working. Something could always come up and something could go wrong, but I'm still willing to take that risk.

Mom says she has accepted my deafness and loves me for who i am and all that stuff, but it's just difficult when she points out all the stuff that I have already considered. What does she think I am, dumb? I've done my research, for YEARS. I've talked with various CI users, in person and online. I've questioned the CI audie in Denver from time to time to get answers. I've been doing all this since I was in high school when I first started exploring the cochlear implant option. I'm confident in going with the cochlear implant option. I just wish she would quit badgering me, and respect my decision.

To cure or not to cure...

Tonight, I informed my mom I got the medial records release forms sent off. Then mom started off on how she doesn't understand why I couldn't wait a few more years for the hair cell regeneration... What? How many times do I have to have this discussion with her?

I'm not looking for a FULL-OUT cure to deafness. With a cochlear implant, I'm still going to be deaf when it's turned off. With the hair cell regeneration, I'd be hearing again, 24/7. I don't want that. "Then what do you think the cochlear implant is, not a cure?" In a way, it's not. Yes, it's another way to hear, a better way to hear than with hearing aids, but it is still NOT a cure, like the hair-cell regeneration would be. I hate having this sort of discussions with my mom. I know she wants for me to be hearing again, hearing well and keeping up and all that jazz. But I myself, do not want the magical miracle cure that would make me a totally hearing person again. I really don't! "You get all these ideas from Jo!" Uh actually, no I don't. My brain, my mind, my thoughts, MY FEELINGS. I mean, Jo understands where I'm coming from, she really does, and she's deaf herself. She herself wouldn't want to go for the full out cure either (she might do the hair cell regeneration in 1 ear if it was available and truly does work, but thats it).

I don't even see how hair cell regeneration would even work if the cochlea is ossified.. It's bony substance, how would the hair cells grow back? In a normal non-ossified cochlea, I can see that happening. But what about the ossified cochlea for those who have had meningitis (ossified cochlea is common among those who have had meningitis). I don't know. But, it's talks like the one we had tonight where I end up feeling offended by my own mother because she truly doesn't understand. She says she "gets it", but I don't think she really does. And no one even really know how long it will be before the hair cell regeneration would even be available, it could be years! Why wait YEARS, when I could work on getting a cochlear implant and possibly have it however soon I can get one? The cochlear implants are available NOW, and they are constantly improving technology and doing what they can to make sure the new processors will work with older implants. And once you take off the processor, voila deaf again.

Yes, I've struggled with being deaf, and get frustrated. But, I just could never go for the all out cure where I'd be perfectly hearing again. I don't want that. I've accepted deafness, it's a part of me (even though there have been times when I've hated it). But I just wouldn't do the hair cell regeneration. I'm sure I'm not the only deaf person who feels this way.

This post probably doesn't even make much sense.. I don't know. Mom keeps telling me I was making no sense tonight when we were "discussing". Oh thanks a lot. I'm just offended that she would think I should wait it out and go for the all-out cure, when I have told her several times in the last few years I DO NOT WANT THE CURE.

Medical Release Forms

Wowza! After I got done with work, I drove straight down to my audiologist's office. Finally got the earmold tube replaced, and I filled out a release form so they can release my records to Rocky Mountain Ear Center. Then I came home, printed off the response email so my mom could read it and know what's going on. We talked about it some more, told her I'm still working on finding funding and stuff like that. She says she thinks she has a copy of my medical records from Sheridan Hospital somewhere, but she's not positive. I told her I knew where to get the hospital's release form online, I could just print it off, fill it out and fax it to them. I should have a copy of those records in my files anyway, you just never know! Printed off 2 copies of Sheridan hospital's release form, one filled out so the records can be sent directly to Rocky Mountain, and the other one with the same records sent to me so I had them for my files. I also emailed the Hearing and Speech Center at the University of Wyoming, asking if they had such a form that I would need to fill out. They are the ones who have dealt with most of my audiological needs since I was 2 or 3, outside of the local school district's audiologist (my current audiologist has at least 2 of my "recent" hearing test results from the school district). I just want to get all that stuff sent off to Rocky Mountain so that the doctor can review them, and then he'd know what I should do next.

Once they get all of my records from everyone and have reviewed them, hopefully from there we can continue on, repeat the hearing test, get the CT scans, and whatever else is involved in the process. Then I should be able to fill out the application for the CNI CI Assistance Program and wait for a response from them. And while doing all this and waiting, I'm going to work on figuring out the funding aspects.

Great, got a response!

Got a response from the person I've been in contact with about continuing with any sort of testings/follow-ups to verify my candidacy for a cochlear implant.

I have spoken to my office manager regarding this matter of the ct scan and follow-up here with the audiologist and the appointment to see Dr. Kelsall and this is what has to be done at this point. Dr. Kelsall will have to approve the ct scan and any future visits, since you are a self pay patient, this is a office policy. I see that you have been seen at Alpine Hearing Care, we will need you to request your medical records be sent to us so that Dr. Kelsall can review them and I will also give him your cochlear implant evaluation that you had with Allison Biever on 09-17-07 and then he will inform me as to what to do from there. I spoke to Allison and since your evaluation was in 2007, you will need to be seen again for a hearing test. You will not have to repeat the complete evaluation, but the hearing test will let us know how your hearing stands since your last testing with our office. If the doctor gives me approval to continue, you can let me know where to send the order for the ct scan and you will need to discuss payment with that facility, and I will need to know how payment will be made for the appointments that you will need from this office.

I understand that it has been explained to you from the assistance program that even with assistance, there is still a large amount of out of pocket that is due from the patient. I am not trying to discourage you, I want to help you to understand what all is involved so you will know what to expect.

I still have my hearing aid money in my savings account (which I was going to use to pay for the Naida hearing aid, but didn't as I returned the hearing aid by the end of the trial). Perhaps I can use some of this money to pay out of pocket for any appoints with Rocky Mountain Ear Center, to pay for the CT scans. As for costs that doesn't include the actual implant device (that is, if the program should accept my application and help), I'm working on that. Have contacted a couple of organizations (the local Lions Club being one of them)... Have gotten a response back from 1, and she gave me some resources I could look into. Hopefully we'll get somewhere. I shall keep working on this, doing research, discussing with my mom, and trying to get going.

I've been meaning to stop by my audiologist's office anyway, as I do need a new tube for my earmold (the current one is stiff and just blah!). So I can have them fax over my files they have. I'm also working on getting my meninigtis records from the hospital that treated me (just need to finish filling out the request form and actually get it sent!). I had a copy of my meningitis records once, which I used for a presentation/project I did on meningitis in 7th grade; not sure what happened to them since then.

CNI Assistance

I went back and looked over the application for the CNI CI Assistance Program, and for sure I would need to have all of the necessary testings to be deemed a candidate completed (hearing tests, CT scans, etc.) before I can even send in the application. And since it's been a year and half since I did the hearing tests at Rocky Mountain Ear Center, I don't know if I would need to redo the hearing tests or not, but I'll find out. The person I've been in contact with at RMEC keeps telling me to send in the application, then let her know of the result, but I can't as I need to get all the testing done. I don't know how much experience she has with the CNI's application process (Dr. Kelsall does, as he helped create the program). If only I could just get in direct contact with Dr. Kelsall. I'd contact the audiologist but I'm sure she's busy with other patients.

I'm sure all the testing will cost money, but I'll find the money to pay for them if I have to. I already have an estimated cost for the CT scans from when I made the relay call to the imaging center last year or so. I can always call them again and get a new estimate, just in case prices might have changed.

It's frustrating, trying to get all this figured out and trying to get on with the process. Hopefully we can get all this sorted out, and I can complete the testings to be deemed fully 100% a candidate (I was deemed a candidate just based off the hearing test results, but have not done any other testings yet). Then I can fill out the application, get all the paperwork necessary from the entire CI team, and send it all in. Then I would wait while the program went over the application and made their decision.

Right at this time, this method is the only possible method that could possibly work out and I could actually get the implant (that is, if the program accepts my application and will help me). If the program doesn't work out, then I'd work hard to find another solution, a way to pay for everything.

Randomness

Right on, I can see properly again! Yesterday, my mom and I had a girls day. We drove around, looked at a couple of houses (we're house hunting for my sister, as she and her husband [and little boy] will be moving back here in June), then headed over to Walgreens. Mom needed some random stuff from there. It was inside Walgreens when I realized my glasses were broken, again. The frame right around the lense broke. Same place as last year when it broke, except on the opposite side of the nose. Oh brother. Must be some weak frames or something. Went on the rest of the day without glasses on, which wasn't too bad. We went to the mall, had lunch and then saw "Marley and Me". Good movie, I enjoyed it! Good thing I read the book just in the last 2 weeks though, otherwise I wouldn't have understood it as well. Lately, I have been trying to read the books before seeing certain films (read the story before seeing The Curious Case of Benjamin Button, read Marley and Me before seeing it, same with the Harry Potter series, etc... Films don't always follow the books 100%, but at least I get the general idea of what's going on whe I see the film in theater.. with the X Files movie, I read the book afterwards and it made a lot more sense to me!).

Am still figuring out how to go about getting back on the CI track. Got a response from someone at the CI center asking how I would be paying for the CT scans (out of pocket of course... when will I ever get insurance? Hm!). I'll just have to really save up some money. Perhaps part of my tax refund will be used to pay for the CT scans, who knows. For sure, part of that refund will be used to pay for new glasses (and to pay off the credit card bill... sorry Mom, HAD to use it!). I know I'll get enough money saved up though. Then we'll go from there I suppose. Get the scans sent off to the doctor in Denver, maybe someday make a trek down to Denver (I don't see this happening for quite a while though, unless I'm willing to pay over $100 to hop a bus to Denver and find some way to get around Denver... err confusing). Next month, mom and stepdad will be flying off to Ireland, then in April we may possibly be flying out to North Carolina (depending on what my sister decides). Then May, there's Mother's Day at the flower shop. June, sister and her family move back and we will surely be helping them with the move. I'll have to talk to them and see if something can be worked out though. I'm still too much a wuss to attempt driving down to Denver myself. If I could go with someone, and we had the GPS navigator, it'd be manageable.

Got my glasses fixed today, and will have a new pair ordered soon enough. I've had my current pair for a couple of years or so, and with two breaks by now, it's time for a new pair. My prescription (which I got last year after getting my eyes checked since I was extremely sensitive to lights) is good until 2010 so might as well get the new glasses. I definitelly needed to get the old pair fixed though, otherwise I would have struggled through work, skipping lines and messing things up, which would have been bad.

Thoughts

Just lately I've really been thinking of the cochlear implant path, and of wanting to get back on it. I've contacted at least 3 different contacts about getting back on track. Contacted the CI Center in Denver to see if it's wise to get the CT scans done, that way the doctor can look over the scans, then help me fill out the paperwork for the CNI CI Assistance Program (the application would need like a letter from the doctor, audiologist, etc.). Makes sense, right? Then I can send in all the paperwork to the program, and get word back from them on if they'll help. I also contacted the person I had been in contact with about funding for any part of the process (if the program will for sure donate the implant, person can help me find funding to cover the hospital/surgery/etc. costs). I still have the relay call from when I called different local MRI/CT imaging centers about approximate costs and still have that information. I just filed my tax return, and should be making a bit more money now that I can work up to 29 hours a week. So I would think I could afford the CT scans more easily now. So why not get going with the process?

For now, I'll just play the waiting game, waiting to get responses. Then get the CT scans taken cared of, and have the doctor look at them and find out if there's any hope at all of implating the left ear. If there's no hope at all for the left, I would consider the right, even though I know Mom worries the procedure won't work and I may be left completely deaf for life. I'm aware of that risk. I do want to at least get the scans done, and go from there. Get things figured out.

When I temporarily left the CI path to try out Phonak's Naida, the CI idea never left my mind, ever.