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!

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!

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...

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.