Okay, so I live in Michigan where the weather is not really that predictable. We can have 70 degree weather one day and have it snowing the next. This can get frustrating for someone who has Usher Syndrome. On overcast days we can go without sunglasses and on bright snowy days we need those sunglasses. On snowy days it is a little difficult to use a cane when there is snow on the ground and no one has shoveled. We had a wind advisory the other day... the wind was gusting 40-50 miles per hour, also not exactly good day to use a cane. Man, I think I need to move to a more friendly blind spot.... overcast warm days with slight breeze and no snow.... hmmm... sounds like heaven to me, but the girl in me craves the sun so I guess I can rock the sunglasses!
My next adventure is to research somewhat local places to take my daughters on a mini vacation. I am kind of interested in Great Wolf Lodge, but like I said I am going to research some.
Sunday, February 20, 2011
Friday, February 11, 2011
Independence
First of all I want to apologize for not writing a post last week! I was attempting to write every Friday for this year. I remembered on Saturday night that I had not made a post and then forgot to do it anyways! So this post is for this and last week!
So independence. I think everyone takes their individual independence for granted. I know I did. I did everything I possibly could on my own and to the best of my ability. Since being diagnosed legally blind a year ago on February 4th I gave up my driver's license and learn how to use a cane. (Although I don't use the cane as much as I should). I have been using assistive technology such as a vibrating alarm clock (not as fun as it sounds!), a abnormally loud doorbell, a sensor in my youngest daughter's room that sets off my vibrating clock to wake me up, and trying to learn braille. These are all tools that will help make me more independent, but life would be so much easier if I didn't have to use them, and especially if I didn't have this disability.
I have had to teach my children how to guide me and how to help me when I need them. They are amazing and I could not be more proud of my little girls! I am hoping that by living through the difficulties that they have seen me go through that they grow into compassionate young women who can make a difference!
Although blindness and deafness have been around since the dawn of time technology has only been advancing significantly for these two disabilities in the last twenty years. I am always hearing about new technology and cannot wait until they become available to everyone. Did you hear about the technology Ford has been attempting to allow blind people to drive cars? They had a blind man test drive a car around Daytona International Speedway a few weeks ago to show the world that they are getting closer and closer. I, for one, would love to have that kind of independence again! So, I guess what I am trying to say is live life to its fullest but be careful because you never know if you could possibly lose a little piece of independence.
So independence. I think everyone takes their individual independence for granted. I know I did. I did everything I possibly could on my own and to the best of my ability. Since being diagnosed legally blind a year ago on February 4th I gave up my driver's license and learn how to use a cane. (Although I don't use the cane as much as I should). I have been using assistive technology such as a vibrating alarm clock (not as fun as it sounds!), a abnormally loud doorbell, a sensor in my youngest daughter's room that sets off my vibrating clock to wake me up, and trying to learn braille. These are all tools that will help make me more independent, but life would be so much easier if I didn't have to use them, and especially if I didn't have this disability.
I have had to teach my children how to guide me and how to help me when I need them. They are amazing and I could not be more proud of my little girls! I am hoping that by living through the difficulties that they have seen me go through that they grow into compassionate young women who can make a difference!
Although blindness and deafness have been around since the dawn of time technology has only been advancing significantly for these two disabilities in the last twenty years. I am always hearing about new technology and cannot wait until they become available to everyone. Did you hear about the technology Ford has been attempting to allow blind people to drive cars? They had a blind man test drive a car around Daytona International Speedway a few weeks ago to show the world that they are getting closer and closer. I, for one, would love to have that kind of independence again! So, I guess what I am trying to say is live life to its fullest but be careful because you never know if you could possibly lose a little piece of independence.
Saturday, January 29, 2011
New Facebook page
As most of you know I have Usher Syndrome. This is two separate genetic disorders combined to make one disability. My eye condition alone is called Retinitis Pigmentosa and my hearing loss is categorized as moderate to severe. With the help of hearing aids I can hear almost everything that a normal person hears, As for my eyes, I have tunnel vision. With my glasses I have near perfect vision except for the fact I have no peripheral vision.
The other day I got a message on my Facebook page about a new group forming and thought I would share it with you folks so that you could check it out. It is called "The Low Vision Bureau: Low Vision Americans' Reviews of Restaurants." This is a page where people with RP go to write a review of a restaurant they visited. Most people don't think about how a restaurant can affect a blind person. Yesterday, I went to Applebee's restaurant and the lighting was so dim I could barely see. Thankfully all of the windows were open so that I could see what I was eating!
Also, listed in this page is a photo album of what people with certain eye conditions see. I thought this was really interesting and wanted to share that link with you as well so you can get an idea of what I see.
http://www.facebook.com/home.php?#!/photo.php?fbid=188848417810376&set=a.188848397810378.50901.181609248534293
Check it out if you have time. I think you will be surprised.
Also, I just wanted to say if you ever have any questions please feel free to leave a comment and I will try to give the best possible answer!
The other day I got a message on my Facebook page about a new group forming and thought I would share it with you folks so that you could check it out. It is called "The Low Vision Bureau: Low Vision Americans' Reviews of Restaurants." This is a page where people with RP go to write a review of a restaurant they visited. Most people don't think about how a restaurant can affect a blind person. Yesterday, I went to Applebee's restaurant and the lighting was so dim I could barely see. Thankfully all of the windows were open so that I could see what I was eating!
Also, listed in this page is a photo album of what people with certain eye conditions see. I thought this was really interesting and wanted to share that link with you as well so you can get an idea of what I see.
http://www.facebook.com/home.php?#!/photo.php?fbid=188848417810376&set=a.188848397810378.50901.181609248534293
Check it out if you have time. I think you will be surprised.
Also, I just wanted to say if you ever have any questions please feel free to leave a comment and I will try to give the best possible answer!
Friday, January 21, 2011
What to do?
This weekend the windchills have slipped into the negatives... brrr! So I am staying inside as much as possible with the exception of going to my mom's house so that she can help make make 8 ragdolls for Gabi's girl scout troop members. How can I do crafts? Well, I am legally blind, not completely blind. Basically, I have tunnel vision. This means I cannot see people stand next to me or little children standing directly in front of me. With my glasses I have perfect vision. What a cruel irony huh? But at least I can see my children's beautiful faces, the beauty of nature, read my beloved books, and do my crafts.
My oldest asked me the other day "Mommy, why did you have to be blind?" How do you answer that question? So I thought for a minute and replied "I don't know baby, but maybe it is supposed to make you grateful for the things you have and make you feel compassionate for others who don't have what you have." She thought for a minute and said "I am friends with the autistic kids in my class when other people ignore them." I couldn't say a word but hugged her silently then pulled away, looked into her eyes and said "I am very proud of you." Of course she blushed, but it was true. My nine year old little girl is growing up so fast!
My oldest asked me the other day "Mommy, why did you have to be blind?" How do you answer that question? So I thought for a minute and replied "I don't know baby, but maybe it is supposed to make you grateful for the things you have and make you feel compassionate for others who don't have what you have." She thought for a minute and said "I am friends with the autistic kids in my class when other people ignore them." I couldn't say a word but hugged her silently then pulled away, looked into her eyes and said "I am very proud of you." Of course she blushed, but it was true. My nine year old little girl is growing up so fast!
Saturday, January 15, 2011
One of my New Year resolutions was to write in this blog at least once a week. I don't know if I can do it but I will certainly try!
Last week I wrote about my Winter blues and how the bright light hurts those of us with this eye condition. I don't think most people really understand what it is like to be legally blind. Sure, everyone can close their eyes and say "wow, I don't think I could do this." We legally blind or even us Usher people didn't choose this nor would we ever have chosen this life. It was simply genetics. One bad one from each parent.
Every morning I wake up and think "what a blessing" and then I rub my eyes, which are dry and full of gunk (a symptom of RP), and then put on my glasses and hearing aid (one because the dang dog chewed on the other) and start my morning routine of making sure my girls have everything in their backpacks. My day continues, full of challenges which include running into things (because I can't see anything below my nose), completing assignments for school, and doing housework all with a two year old up and around. One is going through the worst case of terrible two's that I have ever seen. At then end of the day my eyes are tired and sore, my ear is begging me to take the dang ear mold out of its canal, and my poor legs are screaming in pain from all of the new bruises I have acquired during the day. I crawl into bed, take out my ear, take off my eyes and go to sleep only to wake up and think "what a blessing." And you thought your life was tough try walking in my shoes.... you might want to invest in a pair of shin guards though...
Last week I wrote about my Winter blues and how the bright light hurts those of us with this eye condition. I don't think most people really understand what it is like to be legally blind. Sure, everyone can close their eyes and say "wow, I don't think I could do this." We legally blind or even us Usher people didn't choose this nor would we ever have chosen this life. It was simply genetics. One bad one from each parent.
Every morning I wake up and think "what a blessing" and then I rub my eyes, which are dry and full of gunk (a symptom of RP), and then put on my glasses and hearing aid (one because the dang dog chewed on the other) and start my morning routine of making sure my girls have everything in their backpacks. My day continues, full of challenges which include running into things (because I can't see anything below my nose), completing assignments for school, and doing housework all with a two year old up and around. One is going through the worst case of terrible two's that I have ever seen. At then end of the day my eyes are tired and sore, my ear is begging me to take the dang ear mold out of its canal, and my poor legs are screaming in pain from all of the new bruises I have acquired during the day. I crawl into bed, take out my ear, take off my eyes and go to sleep only to wake up and think "what a blessing." And you thought your life was tough try walking in my shoes.... you might want to invest in a pair of shin guards though...
Saturday, January 8, 2011
Winter Blues
So old man winter decided to finally join us these last couple of days. This is the most snow we have gotten all winter and I think we have a total of 4 to 6 inches. Now here is the thing. We all know that the sun reflects of the snow which makes it hard for anyone outside to see. As a person with RP (Retinitis Pigmentosa) this brightness is very painful. When I go outside without sunglasses on a bright sunny snowy day it feels like someone is taking hot pokers and shoving them into my eyes (Not that I have ever had that happen, but I imagine it hurts all the same). I have two very large sunglasses that fit over my sunglasses for days like these but personally I would rather stay inside where all of my curtains are closed and letting the minimal amount of sun in. We RP people prefer overcast cloudy days, besides who wants to be outside in 18 degree weather besides my kids?
So here is my tip of the day. If you are talking to someone who has RP or is legally blind outside, put their back to the sun, Our eyes are really sensitive so help us protect what little vision we have left.
So here is my tip of the day. If you are talking to someone who has RP or is legally blind outside, put their back to the sun, Our eyes are really sensitive so help us protect what little vision we have left.
Wednesday, October 13, 2010
Update...
Wow, I am horrible at this blogging thing! I haven't written a single thing since the first day of summer?!? Well, here is the update. I finished the whole cane training thing and have those skills under my belt. I really don't use my cane as often as I should so I am going to make a conscious effort to use those skills. I am also in class two of my braille lessons but haven't kept up with that either. I really am beginning to think I have too much on my plate with taking classes through the University of Phoenix, Braille lessons, running a house, and three little girls!
As for the Usher's I have found a lovely new side effect (that should be dripping with sarcasm in case you couldn't hear it). When I wake in the morning I have to rub my eyes raw because I wake up with gunk in my eyes. Its almost like when you have a really bad head cold and you wake up with your eyes matted shut.... yeah, that is every morning for me now. I have to pick and rub because it is not only on my lids but it is on my eyeballs too and it is really uncomfortable all day long. So I am thinking I am going to go to the doctors to see if there is a prescription out thete that will work because over the counter eye drops are not working.
I still with depression over the loss of my vision but I have a new mantra. "This is just a test and I will pass with flying colors." I also think a friends new tattoo on her foot which says "Nothing less than amazing." (Thank you for that mantra!)
We were all given the chance to prove that we are someone special and we can do amazing things.... some of us just never really understand that or take that chance to prove it and the rest just take life for granted. I really never really realized how fleeting life can be until I was standing graveside memorial for my uncle who was honored with time-honored military rights. I began to cry as they played taps and made a promise to myself to finish school, live to my potential and be the best I can be as a mom, wife, and most importantly.... human being. Because life really is short.
As for the Usher's I have found a lovely new side effect (that should be dripping with sarcasm in case you couldn't hear it). When I wake in the morning I have to rub my eyes raw because I wake up with gunk in my eyes. Its almost like when you have a really bad head cold and you wake up with your eyes matted shut.... yeah, that is every morning for me now. I have to pick and rub because it is not only on my lids but it is on my eyeballs too and it is really uncomfortable all day long. So I am thinking I am going to go to the doctors to see if there is a prescription out thete that will work because over the counter eye drops are not working.
I still with depression over the loss of my vision but I have a new mantra. "This is just a test and I will pass with flying colors." I also think a friends new tattoo on her foot which says "Nothing less than amazing." (Thank you for that mantra!)
We were all given the chance to prove that we are someone special and we can do amazing things.... some of us just never really understand that or take that chance to prove it and the rest just take life for granted. I really never really realized how fleeting life can be until I was standing graveside memorial for my uncle who was honored with time-honored military rights. I began to cry as they played taps and made a promise to myself to finish school, live to my potential and be the best I can be as a mom, wife, and most importantly.... human being. Because life really is short.
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