Jan 10, 2012

Lend me an ear?

You don’t know what you have…
...until it's gone.
I've never been vocal about my illness as it is such a private thing, but right now I can hardly contain myself that I feel I need to blurt this out, somehow, somewhere... I'm not sure if it's right to use a blog, or to write to a yahoo group, or on Facebook, but what the heck, I am so ‘up there in the clouds right now’...I'll tell you my story.
In the late 90's or early 2000, I don't even remember unless I can ask my Dr. next week, it happened so suddenly. My husband and I were redoing the front of our Mobile Home. It was only about 10 years old, but the front was affected with black mould and we were tearing it all out to be redone. Just a few hours into the work, despite wearing a mask, my head began to spin, it hurt so bad and I ached all over. I ran a bath to seek relief, but it became worse and that night was taken to emergency and hospitalized. The doctor on call didn't believe it came from the mold as it is a common occurrence on our wet coast, but as a precaution held me overnight. The next day, despite not being able to walk on my own I was sent home where the illness took me down into a spiral that would last for 6 months. I had come down with a Virus that affected my balance center and vision. Later the Doctors would determine I had a virus of the hearing organ and an inflammation in the connection to the brain. They said it wasn't Meniere's (because it normally affects only one ear) but whatever struck me, it caused me to be bed-ridden for more than 2 months and convalescence for another 4 or so. For weeks I was unable to even open my eyes because the world was spinning every second of every day and my eye muscles kept my eyes rolled into my skull. I was unable to walk nor could I control my balance. I actually feared for my life and thought I would die.
I wasn't extremely religious, even though I was raised a Lutheran Protestant who believes in Jesus. I prayed to God to please help me. I wasn't very religious, but and our small town heard about me and sent a Minister to my home with 2 others who blessed me. Not long after I was able to get out of bed and would sit up a few minutes here and there and eventually take more and more steps, but some people were talking in our small town when I would stagger into the grocery store, that I must be suffering from alcoholism. Never assume! lol. I wasn't even on any medication other than something for motion sickness.
It was this virus that would slowly take my hearing. From then on I have lost more than 50 decibels and am continuing to loose on average 10 decibels every 3 years which will mean I'll likely be considered deaf in approximately 15 years.  I'm considered moderately or half-deaf right now and although I'm not really one to complain, I wanted to write to some of you who know me, how much joy I'm experiencing right now. Pure and utter joy!
Yes, I'm soooo happy that I can hardly see the keyboard as the words are swimming. (Good thing is I don't need to see as my fingers remember the keys). I can hear!! What a tease this experience is, to remember what it used to be like. Alas, it will be short-lived as I only get to try these digital aides for 2 weeks, but I already don't want to give them back. The difference they make... The first thing I did when I got home is phone my daughter who instantly said "Mom??? I don't have to repeat everything I say!!!! what's going on?!" For years I struggled on the phone in general and in the last couple of years I wouldn't even go near a phone unless I absolutely had to and would make my husband do all the talking for me, or I would have to get out my amplifier and that darn thing just amplifies absolutely everything and would make my ears hurt. Now I realize an amplifier is just NOT like a hearing aide at all. I can still hear some sounds in the normal range, but the rest is just gone. I could no longer hear paper ruffling, leaves falling, birds whistling in the morning, the microwave or oven dinging when done and even the alarm clock wouldn't wake me anymore!!...but at least in person I could still hold a conversation by reading peoples lips, but that wasn't possible on the phone!! How I missed holding a conversation! Some of my friends didn't even know I was hearing impaired and some still didn't until now, but I began to repeat over and over the same words many times in one conversation..."I'm sorry?" "Excuse me?" Do you know how... tired...I... am... of saying these words? of course I feel sorry when something bad happens to someone else, but I'm so tired of having to 'apologize' for my hearing loss. I shouldn't have to apologize everywhere I go! And the hearing loss has turned me into a Hermit. It has turned me anti-social...because I cannot participate in full or I have to pretend I heard what was spoken...it is a lonely world.
My father-in-law, who has age related hearing difficulties, before I even tried this second pair of ears, said that I wouldn't like them. I can't believe he said that and I thought ok...they must not be working then, but when the Clinic offered me to try them before having to purchase them I said "why not!" And oh boy, was my Father-in-law wrong!! Well, my loss isn't age-related either, lol, I'm not that old.
My husband joked that these might become the most expensive pair of Diamond Earrings I could ever imagine owning (not that I own any!!), but I also can't understand why our medical system won't be covering me for these Wires in my ear, not one penny of it and since I don't have any sort of insurance...well, it will be a difficult road to come up with 5 grand for these babies, they might as well be Diamonds. My mother said she'd love to help me out, but doesn't have that kind of money and I was raised to never purchase something that I don't have the money for. I'm tempted to put them on my Visa like the Clinic says I can do, but what if I can't make the payment? Will a guy come to my house and tear them out of my ears and repossess them? LOL, the thought!!
I now regret having gone for the trial...I shouldn't have tried them unless having the money first, but I thought that my Father-in-law would be right as he doesn't like his. Too bad he can't just give me the one he has! but it doesn't work that way. And I wrongly assumed that Medical would cover me because of an illness and a medical ailment. Our Canadian healthcare is so strange...same with a Wisdom tooth...if you get them pulled at a Dentist then you pay, if done in the Hospital, then Medical pays...If by chance the Ear Doctor says there is a remote chance this is in any way operable...then medical would cover the surgery, so why not a Prosthetic...but then...who is listening? But I thank 'you' personally, for lending me your ears…
If you can, or want to help contribute toward my hearing in any small way, please look on the right for the fundraising activity. Each contribution, even the purchase of a tutorial or supplies from my shop, adds up toward my quest. 

8 comments:

Vanessa said...

Tina I knew u had hearing loss what I didn't know was the cause. I'm really glad you have the opportunity to hear all those sounds you have missed. I hope some how you are able to find the money you need to buy these devices.

Beadcomber said...

Thanks Vanessa. Someone just suggested to me to get my FIL's and get it worked over to fit me. Then I'd still need a second one. Apparently his doesn't have a remote control like the ones I have right now and he says he can't adjust it, but maybe he doesn't know how. I'll find out more...having one isn't as good as two but would be better than none.

Unknown said...

Tina, I do hope you manage to raise the money you need for this, I can imagine it will be heartbreaking to hand the hearing aids back just when you've got used to hearing properly again :(

Lupe Meter said...

Wow, Tina, never realized you had hearing loss. Molds can be the cause of many illnesses, for sure...scary experience you have had to endure. I am glad there are devices out there that can give you the opportunity to hear. I will keep you in prayer, that in God's infinite wisdom and provision, one will be affordable and accessible to you soon!

Melanie J. Pierce said...

I had no idea you had hearing issues Tina.. it is very sad that your Medical won't cover the cost. That is a shame! :( I will keep you in my prayers and I sincerely hope things work out so that you can have the hearing assistance that you deserve...Bless you! :)

Beadcomber said...

Thank you. I'm at a loss for words...but thank you

Anonymous said...

HI Tina, I'm so sorry about your hearing loss. We've talked a couple times about your tutorials by email, you're so talented and you don't deserve this to happen to you. I am Canadian as well and I know first hand how horribly mean our health care can be. I have severe back & neck pain with arthritis, I could use an operation to get rid of the scar tissue but they won't do the surgery here. The surgery would cost over $15,000 in the U.S. but you can go to the U.S. for gastric bypass for free! So I've lived with chronic pain for the last 10 yrs. Keep trying, keep hoping, I know sometimes when things like this happens, people will come through for you and I'm not super religious either, but prayers DO help sometimes!!!! Good luck!!! R. Dauphin

Anonymous said...

Hi Tina,

With all your talent and creative exuberance one really could not imagine that you have a hearing problem. I have too, and like you it appeared after a virus. I have been totally deaf on one ear since birth and people around me always have to be told, because they might think I was rude if they sit on my wrong side. I was fortunate to have purchased one of those magic units when they were still more affordable, but could not wear it, because I worked in a noisy environment. Even though mine is programmable it's not suitable for all occasions. I also find the world really, really loud wearing it all the time and sometimes feel the old fashioned cheap models where one can adjust volume would be lovely.
In short, if you go down that route, make sure you try one out in many scenarios. Make sure the supplier is not only offering one brand and make sure you have a hand control, which you can turn towards the person talking to you. I don't have that and am really annoyed about not having been supplied with one.

Hope you can rustle up some local support through local media. Get someone to write a story in the local paper. Put up a sign at market stalls you hold with a funding thermometer, so people know where you are heading.

I hope you will reach your goal. I am annoyed too, that these devices are not covered by health funds, as it really isolates many elderly people too.

Gastric bypass for free is just a joke IMHO, so many people develop irreversible complications from these, often early death. What a price to pay for a free procedure. It should be banned all-together - just like genital mutilation. Lets vote for hearing aids instead.

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