Testing…Can You Hear THIS?

I have been reclusive a lot this for what I thought was only this last year for a variety of reasons. I didn’t realize until I came here to post that it had been much longer. It started off as just life being busy, things going well. Then it became health stuff, work stress, juggling health stuff, followed by loss of a job then compounded by more health stuff and financial struggles because of lack of job. All of this was driving home the final nail in the coffin of my writing that had been on its death bed for quite some time.

I made a post recently on Facebook and it was noted by a few friends, who have known me many years, that they were quite surprised to see me share so openly about my Lupus diagnosis online. While it is true that I tend to be normally a very private person in the more “public” realm this is not necessarily true when one on one and I feel my sharing can help. I am working a different paradigm these days in regard to my invisible illness struggles.

While I may not share details of my relationships/daily heartaches etc. publicly or often, I think that talking about issues of this nature; my Lupus, hearing loss, OCD, PTSD, etc. is vital. It may be the only other time someone else who is struggling resonates. If I can help one other soul who is struggling to see the light or hear the music in this world I will keep sharing the hard and painful stuff.

Ok then, on with it…

Those close to me know that this past year has marked a great increase in my difficulty hearing and comprehending what is being said to me. I not only have hearing loss I also have severe tinnitus. I have tried to manage, accommodate and work around it but it has only helped a minuscule amount. It has gotten so bad that it has kept me often feeling very isolated even in a room bustling with people. I was at a much needed OA conference about a month ago that I was fighting breaking down into tears at because I couldn’t understand what the people right next to me were saying at a lunch. I felt completely isolated in a room of 70-80 people who I was there to connect with. This wasn’t the first time. It took everything in me to not lose it right there. I was stunned to be told that the person with me noted the look on my face and was heartbroken.

So, I went a week ago to see if there is anything they can do. I started crying in front of the new audiologist and my doctor trying to tell them why I was there and about the last straw at the conference. Hell, every time I have tried to talk about this to anyone I tear up! (Side note: I hate crying; I hate crying more in public in front of people who don’t really know me.) While my previous hearing aid was a vast improvement it was not enough especially without having the 2nd needed one. To be completely honest, I did not have great hopes when I made the appointment. My doctor reminded me that she said one was better than none when it came to my need for hearing aids at the time but she didn’t mean that was forever; I still needed two and now more than before.

I was very happy to be proven wrong; it turns out there is something. The tech has leaped forward in the last 3+ years and thankfully the price has come down about $1100. This makes the pair $5900 instead of $7k (Not great since insurance still won’t pay anything but any reduction is good in my book!) I currently have a loaner pair through next week and the difference is stunning! I am completely blown away by the difference in the advances in just 4 years. I still have to test them in noisy environments and sweat my butt off while wearing them (the old ones shorted out every time I would sweat even a little, which was a common problem for a lot of folks apparently). The Nano coating on the new ones should stop the shorting problem but if not there is now another fix for that; two now actually! I would probably want to do both for extra protection knowing me. 😉

I want to learn how to lobby for insurance company regulations to change so that they have to provide hearing assistance as necessary for all, not optional. We have dental and vision insurance now, while still elective in most cases you can at least get; which were both once considered optional as hearing aids are now.

I am starting my research once again and hoping that options for assistance have changed for the better in the last 3+ years as well. I know insurance hasn’t, already checked that. Sadly, over the counter amplifiers will not work for my type of hearing issues, though our poor budget sure wishes they did! lol Thanks to all who have suggested them though. 🙂

Below is a great video and article about how difficult it actually is to find the right hearing aid for each person and why it is important to go to an otologist (doctor who specializes in the ear and its diseases) and audiologist (healthcare provider who is trained in evaluation of hearing function and rehabilitation of patients with hearing impairments-including but certainly not limited to hearing aids) and be properly tested and fitted for them. There are many factors to consider when purchasing these outside of just the cost. Much as someone who needs a prosthesis for a limb would be accounting for many factors outside of cost.

http://www.consumerreports.org/cro/hearing-aids/buy…

I am putting pics of what the little buggers look like by themselves and in action below. (I never thought about how hard it would be to take pics of my own ears. lol)

                     

Let me know if you have questions, experiences to share or whatever. Let’s get real and meaningful conversations going about the challenges we face and overcoming them! 🙂

Today I am hopeful and tearily grateful to know that things can get better and I don’t have to keep falling further into the chaotic babble of sound and confused isolation.

~Mags