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.