Sunday, October 20, 2013

Water Proof Ears

So like most people who have had hearing aids their whole life I was super excited when I heard about these Water Proof Hearing Aids.
Unbelievably excited.
So I ordered a pair.

I could not wait to get them.  It's honestly all I ever talked about for the weeks leading up to finally getting them (and I apologize to everyone who had to listen to my ramblings!)  But I was so excited!
I couldn't wait to play in them.  I couldn't wait to go swimming....just get wet in general and not worry that I am going to ruin my ears!  I felt as though...well as Hedley sings it "I can do Anything"
Silly I know, but I was so pumped.

Unfortunately I am seriously considering taking them back on Wednesday and trying something else.
When I got these hearing aids I was just wanted to go out and do it ALL!  But I had no idea that not only would I now be waterproof, but I would be hearing EVERYTHING!  The hearing aids even came with a remote in which I could change settings.  Regular hearing, phone mode, outdoor mode (which is amazing and blocks out the wind), loud noise mode (which is awesome for driving in a car - helps with the noise of the wheels on the road) music and TV mode...pretty nifty.

But everything I am now hearing is too much.  It's been really awesome to hear all these new sounds, but when you've gone 30 years without really hearing fans going, and all this humming and buzzing, and don't even get me started on the sound of paper.  That is a horrible really makes my ears feel like they should bleed when it gets crumpled up.
Now I got the chills thinking about it and not the good kind :oP

Another thing that is a big challenge for me is that these hearing aids do not have a phone coil in them.  So the phone mode doesn't do a whole lot for me.  Where as before I could changed the setting on the one hearing aid and do what I needed with the other one.  I can't do that with these ones.  I can't change just one ear with the remote (that might be something for the company to fix with the next ones?) 

I know most people think working in a library is a quiet job...yeh NO.  We have tons of kids programs happening at the one I work in, and I love it!  There is always something different happening and it's really fun.  But because these hearing aids don't have a phone coil and the "phone mode" is kind of a joke I am having a hard time trying to hear on the phone.  I've never had to learn how to block out background's kind of always been done for me one way or another.  So it's been a frustrating challenge and I think I've had enough.

Do you know when you go on the airplane and you're about to take off?
You get that pressure in your ears and they feel funny and all you can hear is the plane?  That's how a fan sounds to me now. 
I go into a restaurant, a store...any public place it seems all I can hear are these freaking fans and alarms and shit going off.  I can't focus on any conversation without a struggle and I have been finding that I have been relying on lip reading more than anything now...and we all know how much confusion and fun that can cause. haha

I am not trying to "dis" the hearing aids.  I really so badly-it-hurts want them to work out for me.  I want so bad to love them, but they are just not working out for me.
Makes me sad.

But I will keep bugging Bryan until we find a pair that work for me...and who knows...maybe it'll be the water resistant ones he was tell me about...

Wednesday, December 19, 2012

'Tis the Season

Merry Christmas everyone!
I hope that this holiday season treats you and your family well!

As we all know Christmas is a busy time of the year for everyone, and I for one love the holidays!  But I also find it incredibly frustrating and challenging.

The stores are filled up with people in a rush to get in and get out, and it makes to hard to navigate around.  And it amazes me how many people will not move when they see someone with a See and Eye cane.  I tend not to notice for obvious reasons, but Dave was bitching about it the other day and I found it to be rather amusing.  It seems to bother him more than me.
He said that it always surprises him on who will or will not move.  The way he sees it if a child of 4 or 5 can see the cane and will stop and move, why can't a 30 year old, or a 16 year old?
And it also seems to bother him that people will stare.  As many of you know, I think it's funny when people stare, and if I do notice it, I will stare back.
Though, I have noticed I have been sitting on the benches in the malls more and more this holiday season.  Stores are too busy and there are too many people and I start to bump into people and things and then it's no longer fun.  But I hate to shop anyways so....meh.

So anyways I want to share a story about my sister. It seems like all the funny things happen to her....Or maybe I think that because she's my sister and when she does embarrassing things it delights me to no end.  Yes, that is mean, but she's my big sister and I've had to deal with a lot from her growing up (love you so much Michelle)

So I called her a few weeks ago and she and her husband told me this story.
Now Michelle can only see what is directly in front of her.  She hates using her cane, and hardly does!  Hopefully after this, she will use it more. (and yes I am giggling like mad)

So Greg and Michelle went to Wal-Mart to do some Christmas shopping.
And Michelle being Michelle just kept walking, not realizing that Greg was no longer beside her.  So she turned around to see where he was, and when she finally found him he was talking and apologizing.
So this is how the conversation went
Michelle - Greg who are you talking to?

Greg - Well Michelle, I am just apologizing to this person here because you almost walked into them.
Michelle- Who?  There is nobody there!
Greg - Again, I am so sorry, but she is blind and won't use her cane.  She honestly didn't see you. I'm sorry.
Michelle - Greg! Who are you talking to?  There is no one there!
Greg - Michelle, this person here...

Now Greg is super embarrassed at this point and keeps apologizing to the person and Michelle is going on that there is nobody there until she looks down and sees that it was a....little person.

and yes, I am laughing so hard right now I am about to pee my pants.  I guess this person was giving Michelle dirty looks and everything!
I would have paid good money to be there at that store at that very minute.
Now that I've hopefully made you laugh your ass off like I am I hope you and your family have a Merry Merry Christmas...and watch where you are going! LOL!
I love you Michelle!  So Much!

Molly Watt Trust Success

As many of you may or may not know, I work in a library, and love love to read.  So I am always looking for ways to make reading easier.  I really feel that if that part of my life was taken away I would be devastated. 
Which is why I fully support the Molly Watt Trust, and will do what I can to promote it.  Yes, it's in the UK. But the work being done is amazing and helping so many. And I hope one day it will be over on my end of the country!

I was on the MWT page the other day and I saw these two stories that made my day and made me so happy, and yes one of them made me cry a little...but a good cry because this person had not read a book in so long.

I wanted to share these success stories that I saw.
These people have Usher Syndrome, and recived a Kindle from the Molly Watt Trust!!!

This one is from Diane
"I would like to thank the MWT fund from the bottom of my heart!!! Why u say? I have ushers/RP type 2 and for years I've not bought a book as it was a struggle to read with the brightness of the white background and the size of print so I gave up readin! This mornin my doorbell went and was asked to sign for parcel thinking it was Xmas gifts I had ordered, boy I was wrong!! As I opened the parcel WOW I was so excited to see that I had received a kindle and cover from the MWT!! On settin it up etc I couldn't wait to download my first book and was amazed at the difference in readin there was no glare and the contrast is perfect as I read plus I was able to enlarge the print and it was so easy to set up. Now I'm so lookin forward to reading again thank u so much!!! This has given me such a boost as over the last few weeks I've been a low due to a shoulder injury and not havin my guide dog Eric. This has made my day and now I can look forward to readin again while I travel or on a dark cold night while I'm in my bed happy days!! This would never have happened to me only due to the amazin work that MWT team has been doing I can't thank them enough from the bottom of my heart!!! YOU GUYS ROCK XXX"

This is from Debbie - her son Jake also got a Kindle!
Jake received a Kindle today from MWT, he was so excited when he opened the parcel, he has already read a book an downloaded others, jake was diagnosed in April and although not too bad at present he has started to struggle with small writing (especially in school text books), he is going to download some of his curriculum books to make school easier. Jake has loads of books but hasn't picked one up in a while, I can see his spark for reading re-ignited already, thank you MWT an love to you all xxxx"


Wednesday, October 24, 2012

The Molly Watt Trust

Today I wanted to let you guys know about this amazing new trust fund set up by Jane and Molly Watt.  

As some of you know, I've been talking to these amazing ladies for a while now, and I adore them...Even though I've never met them, I admire and respect these ladies like it's nobody's business.  The things these ladies are doing to raise awareness for Usher Syndrome is inspiring and just amazing! 

Recently they have set up this really neat trust fund in the UK, and all the proceeds go towards helping those who have Usher Syndrome.  It helps them get e-readers.  Here is what it says on the Facebook page that has been set up.

" have created this group to explain the reason behind setting up The Molly Watt Trust.
Through Molly we have learnt so much about Usher Syndrome, about deafness, about blindness, about deafblindness and latterly about guidedogs and guidedog ownership - I thank everybody who has over the past six years supported us along the way.
The biggest and most worrying thing I have learnt about Usher Syndrome is that it is very misunderstood.
Yes there are some medical experts, not many, and they know their stuff, also the odd multi sensory impairment teacher too, again, not many, but really, nobody knows Usher the way somebody living with it does.
As a Mum to a young person with Usher Syndrome, the most disturbing thing of all is the constant battle to get for Molly the things she needs to access our world and for me that is absolutely unacceptable.
Along the way I have learnt that the "post code lottery" is very evident with deafblind support and equipment and this often deprives this vulnerable group of access to the things we take for granted.
The Molly Watt Trust has been set up to try to help with things that cannot be funded elsewhere.
We have initially set our sights on funding access to books by way of Kindle or the like but are open to other suggestions.
May I thank you all for your support. Jane Watt"

 And what an amazing thing to do!  Being a library assistant I am obsessed with books.  I always have been, and usually I have 3 or more books on the go at one time.  Being a library assistant with Usher Syndrome gives me a different view.  When I see a book I want to read, the first thing I do is see if the font is big enough.  I now find it challenging reading those little paperbacks, and it takes me FOREVER to get through them.  I can't even imagine what it's like for those whose Usher is for more progressed than mine.  I also feel that I am a little more aware of how to help those patrons who do come in and need a little more assistant due to visual impairements.  Things such as CNIB./RNIB books are awesome, just plain audio books, Large Print books (which I just LOVE) and of course e-readers, and so much more!  Like I said, the technology is now there to help us who are visually impaired!
and again I am going to quote Jane below.

I'm just wanting to drive it forward as best I can because I believe accessibility is the key to making your lives a little less challenging.  We get so much from books and lots with Usher can't access a book, writing too small, glare from pages, same old, same old. Some people with Usher rarely get out and can't even access reading. Just an example.  There are so many gadgets that can make life easier so every penny helps" -Jane Watt

And she is right!  With today technology there is so much we can do to help those with Usher, and that is why this is such a worth while Trust Fund.  

Right now they are selling these really pretty bracelets that are pink and white (I am colored blind so I think it's pink...I could be wrong.) they say: Molly Watt Trust Supporting People With Usher Syndrome...and, or course, all proceeds go towards helping those Ushers in need!  
So please, do me a favor, go on facebook have a look at the Molly Watt Trust.
Or check them out on Twitter -

and yes, I am going to play the guilt card.  If you don't want to look for yourself, thats fine.  But look for me, look for Molly, look for my sister and those thousands of other people who have this eye condition.  See what it is, ask questions, tell your friends...Raise Awareness

Monday, October 15, 2012

Family Life

Wow!  It`s been forever and a day since I posted on here!  Today I just wanted to chat about my little family out here in AB, and mostly my almost step-kids.
As some of you may know I am engaged to a wonderful man named David, and he has two boys from a previous relationship.  J.J. is 12 going on 30 and Anakin is 10 going on 11 in a few weeks.  Both kids were born really pre-mature.  I think they were only 25/24 weeks along when they were born. 
Jay has nothing wrong with him, he is one of the smartest kids I have ever met and the most literal kid I have ever met.  I love him to bits, but it's kind of annoying.  
Anakin on the other hand, had a struggle.  When he was born he had a build up of pressure in his brain and it caused an explosion, and he had to have a shunt put in.  Due to this, he has some developmental delays.  He is small for his age, and is on a modified program at school.  He has seizures and takes 4 different pills two times a day.  He also had some issues with his eyes that progressed as he got older.  
He also has no filter.  He will say what he wants and when he wants, which in all reality can be super funny, and really awkward.  To give you an example:  His grandmother took the boys to McDonald's last year or the year before to see Ronald McDonald.  Anakin gave him a big hug and was talking to him, and then just let one rip.  Yes, he farted.  But instead of saying excuse me or sorry, he looks at Ronald and said, "Man, I just farted and it stinks."
Yes, funny as hell and whenever I think about it I laugh, but, he shouldn't have said that.  But still it's funny as hell.  
At age 10 he is legally blind in one eye and last week was told that he is getting a See and Eye cane from the CNIB. 
At first he was having none of it.  He said he didn't want anything to do with it unless it was a cane like Mad Eye Moodys (from Harry Potter.) So his mom called and told David what was going on and then I got the call from Dave.  My first thought was 'It's about damn time!'  my second thought was 'Shit! I'm going to have to grow up and use my cane more in front of him.'  Generally I only use mine at night, or if I'm walking to and from work, or in unfamiliar places.  I've never taken it to Wal-Mart or shopping anywhere around Brooks.  Medicine Hat yes, but Brooks no.
We had the kids this weekend and on Friday the first thing I did was explain to Anakin that he can't really modify his cane too much.  I showed him mine, and told him when people see the white cane they know it means you are visually impaired and can't see, so they know to get out of the way.  I showed him how to use the cane, and how to hold it.  I also showed him how to walk with the cane.  Mine is too big for him, but I folded it down so he could get a feel for it. 
I also told him that there will be times that he will hit someone with the cane and that it's okay.  You just need to say I'm sorry, I can't see you, can you move.  So to practice I gave him my cane and had his dad stand in the way so Anakin could hit him.
So he did.  Instead of saying, Oh.  Excuse me I can't see you, can you please move.  Like we went over, He looks at his father and snarls, "Get the hell outta ma way!"

Apparently we have a lot more work to do, but hey, it's a start.

Wednesday, February 22, 2012

To Tell or Not To Tell

I've been asking this question on facebook, and the responses I've had have been very interesting. I guess it depends on the person and how they feel about the situation.

I went for an interview the other day, and I ended up having to tell them about my Usher Syndrome. Part of me hates doing that because then I feel that people wont see beyond that. But unfortunately part of the job was driving to a location every week, and I can't drive anymore. Legally I still can, but I view it as if I am questioning my driving ability...then I shouldn't be driving. SO I had to tell.

So my question on Facebook to the wonderful groups that I am a part of was, 'In an interview, would you tell them that you had Usher?'
And I think that can go for any disability really. Would you tell?
I've always told people in interviews about my hearing aids, and that was never an issue. and I never used to say anything about my Ushers because it never really affected me until the last few years. Except for the night vision. That has always been shit.
But I have to admit - the few places I did tell that I had Usher Syndrome - I didn't get the job.
So yes, it makes me wonder.
What would you do?

Tuesday, November 8, 2011


I am a member of many wonderful online support groups for Usher Syndrome.

And as of late a few of these groups have members that have said or done something that has upset me.

In one group, I had a lady tell me and my sister that we didn't have Usher Syndrome, it must be some sort of other 'mutation' that presents its self as Ushers...(WTF??) she then asked if I know about the genetics involved with the eye which I responded of course...but not in a nice way.
I'm sorry, but I know what I have, I remember all the testing we had to find out, and I've done a lot of research and asked a lot of Doctors A LOT of questions!
After speaking with another friend who has had previous dealings with the Crazy Lady, I learned that my sister and I were not the first people she had said that too. Apparently this women seems to think she is some kind of an expert on Usher and likes to tell other people she does not think that they have it...only her kid has it.
Do you hear the alarm bells going off too? This women is dangerous! I don't even know her name!
What baffles me the most was that I had never talked to this women before, she just happened to be in the same support group. Needless to say at the advice of my friend I got out of the group.

There were some things said and done in another group I am a member of, which I will stay a member of because there is really good information sharing on it otherwise. BUT...

I feel that those of us that have Usher Syndrome need to stick together! We are a small 'community' of people and there are not very many of us. We need to support each other, we need to share out frustrations, goals and accomplishments! If one person with Usher goes out there and tries to rise awareness - no matter who or where they are - we need to cheer them on! It benefits all of us in the end!
If one person with Usher Syndrome is mistreated for being deaf/blind or not getting the funding or support they need, we need to be there to help pick them up and keep them going...We need to support each other!
I don't know how much more I can stress that!
Yes, people have different personalities, different opinions, different outlooks, but we need to learn to express those differences in healthy way. Enough of the bickering and the stupid ass arguing over the STUPIDEST shit!