Wow, when panic mode sets in it’s amazing what happens to the body. Even though my panic episode only last about 15 seconds it had me in a state of, for lack of a better word, panic.
It was shortly after 5:00pm and it was mostly dark outside. My son had a headache and decide he would take a short nap on the couch to see if it would alleviate his pain. He asked me if I could turn off
all the lights and, of course, I did. I was playing Scrabble on my laptop and decided I could see well enough to use the mouse to continue playing. After looking at the screen for about 10 minutes I looked up at the cable box to see what time it was. I panicked because all I saw was black. I couldn’t see the digital clock on the cable box. After the 15 seconds I realized I had to look a little more to the left to be able to see it…BUT I couldn’t see it peripherally even though it was only about 2 feet away from where I was looking. I certainly hope it’s because I was looking at the bright computer screen and my eyes hadn’t adjusted to the darkness when I looked up. All I can say is I didn’t like that feeling one bit.
On Friday, when everyone else was shopping during Black Friday, my family and I went to see The Hunger Games, Catching Fire. We thought it would be a great day to go to the movies. It was PACKED! There were seven of us and the only seats available were in the front row. I haven’t sat in the front row in 30 years. So, we sat down and I realized I couldn’t see the whole screen at once…this just wasn’t going to do. Therefore, we had to scatter throughout the theater. My three kids sat together, my parents sat together, and my husband and I sat together. Not exactly a family outing but we had no choice.
Since my husband and I moved back about eight rows I was able to get a better view. The first few minutes it seemed like the colors were too vibrant and almost too strong for my liking. Once the movie got started and I was really into watching it my eyes adjusted to the brightness.
One thing I did notice…the previews are very loud. When the movie actually started I could hear it but not well enough to capture all the words. Normally I don’t need assistance, such as captions, but it would have been helpful this time.
I suppose with Usher Syndrome (Retinitis Pigmentosa (RP) and hearing loss), my movie going experience will change every time. I will just need to plan ahead a little better.
Have you ever been to a live hockey game? I find that this is one sport I really enjoy live rather than on television. With Retinitis Pigmentosa (RP) you would think that keeping your eye on that little black puck would be very difficult. I admit that sometimes it is, but…all I have to remember is to follow the bunch of hockey players or gain a sense of where all the players are headed and I can usually find the puck again.
We had seats six rows up from the rink. It was just high enough so that when you looked at the goalies on both teams the glass didn’t skew the view. I had dressed appropriately wearing two layers and bringing one more. The third layer was great for covering my legs like a blanket as it was chilly. Our team that we were rooting for (Charlotte Checkers) scored the first goal within the first 10 minutes. Of course, being the home team the crowd went wild. The game continued to be very evenly matched then the Wolves scored a point and tied up the game. In the last few minutes of the game the Wolves pulled ahead by one and the Checkers lost the game.
It was my 22nd wedding anniversary and we had plans with our boys to take them to this game. I only wish our daughter could have been there but she is away at school. I look forward to the next game as it is an evening out with very little stress on the eyes and ears (for those of us with Usher Syndrome.) Until then…LETS GO CHECKERS!!!
I was recently promoted at my job and started yesterday in training. For the past seven years I have been working with a research company doing much of the administrative work. What was so great about the job was I worked school hours so I could be home with my children when they got home from school. My youngest is a freshman in high school so it isn’t as necessary to be home the whole time they are. This has offered me more flexibility with my hours. A few weeks ago I was offered a promotion to Marketing Associate and the job started yesterday. The whole marketing team has been restructured so we had to go through a full day of training. As I have done marketing before it was a great training session and we did a lot of brainstorming to work toward making sure we will be efficient at our jobs.
The hard part about our training session was the lighting. We worked in the conference room all day which has fluorescent lighting. In addition, we worked on the Smart Board with the room lights off. We were switching back and forth between having the lights on and off while working with the Smart Board and then just talking. It ended up working out fine but boy was I exhausted when I came home from work.
I really like my job but I don’t like feeling drained by the end of the day. I work from 8:30-4:00 and by 5:00 yesterday I was practically sound asleep on my couch.
I know the new job will be great but I need to figure out how to not be so tired by the end of the day. Does anyone have any suggestions?
We did it! Team Usher Me In (Greensboro, NC & Boston, MA) raised over $4000 for the Foundation Fighting Blindness. Our VisionWalks yesterday were a huge success. The weather was a little cold but it was beautiful and our fellow walkers were terrific. We would like to thank all of those people who donated and walked with us.
Did you know you can still donate money to the Foundation Fighting Blindness (FFB)? You don’t have to wait for VisionWalks. In an effort to raise more funds for FFB and the Hearing Loss Association of America think about online shopping for the holidays through my website. For the months of November and December I will be donating 75% of all commissions to these causes. In order for this to work, you must use the links provided to these stores as this is the only way the commissions are calculated. On January 1, 2014 I will tally up the commissions and write a check to each of these causes. It will be a great way to continue support for these causes and the get year off to a great start.
I have created a team, Usher Me In, to walk in the Foundation Fighting Blindness’ Triad VisionWalk on October 26, 2013. This will be the second time our team has walked and I’m proud to say that with the help of many family members and friends we have exceeded the goal I set for raising funds for vision loss research. This is the best news I’ve had all week.
We still have 12 days to go to raise money for this important cause. So many people are affected by vision loss and I don’t know about you but I want a cure, for Retinitis Pigmentosa (RP) in particular, but for many vision loss diseases.
If you feel called to help please visit our page, Usher Me In Triad VisionWalk.
Shopping is definitely not my favorite thing to do, especially when it’s clothes shopping. I’ve never really liked it but once in a while you just have to bite the bullet and get some new clothes.
You may be asking why I titled my post Color Shopping. Shouldn’t it be Clothes Shopping? In most cases, yes, but in my case I found the clothes I wanted but had trouble finding the right colors. I love clothes that I can mix and match but the colors need to work with each other.
I found a terrific lightweight sweater to wear over short sleeves for the fall months. I picked it off the rack and tried it on and it fit perfectly. Now to find a shirt or two to match. I found several shirts that had splotches of deep plum…perfect. I went into a different dressing room to try all my goodies on only to discover that the sweater is brown, not purple. Good grief, I couldn’t tell the difference until I had them together. Off with the purple items and back to more shopping to look for brown.
The other colors I have trouble with are navy blue and black; red and red-orange; dark gray and black.
After many trips to the dressing room and lots of sorting and matching I came home with several items I really love.
Next shopping trip on Tuesday is thankfully with a good friend. My agenda is jeans and shoes.
I have completed my first week of work with my new schedule. If you read my last post about not driving in the dark in the morning you’ll know I had to change my schedule. I now go into work between 8:30am and 9:00am and work until 4:00pm. This enables me to drive to work in the daylight and get home before it gets dark.
The first few days were strange but by the end of the week I was getting into a groove. What’s really nice is that I have time in the morning to do a bit of cleaning so when I come home I have a clean house. This is one aspect I love.
On the downside, I feel like I’m behind the eight ball arriving to work later. Between the hours of 9:00am and 10:00am I’m racing around trying to get “caught up.” As anyone with Retinitis Pigmentosa (RP) knows we shouldn’t be racing around. This causes accidents and mishaps. I will need to remember that my work will get done and I don’t need to get all frenzied. I know in a couple of weeks I’ll be used to this schedule and things will settle down.
My coworkers have been very supportive and I truly appreciate everyone’s support.
Most people hate when we go through time change in the fall. It gets darker earlier and the days are shorter. For those of us with Retinitis Pigmentosa (RP) this presents other dislikes as well. One of the first symptoms of RP is night blindness, so we really like daylight hours.
About 2 years ago I determined that I would stop driving at night because my vision was changing. For the most part this wasn’t really an issue since my daughter was home and could drive when my husband was working.
Last year at this time I went about my driving like I normally do. Throughout the winter I started realizing that I was having some difficulty seeing in the morning hours as well. I was determined to stop driving in the dark, whether it was morning or evening. Two months ago I started looking for a driver. Since I work right behind a hospital I figured I might have to change my schedule slightly but was hoping to get someone who worked similar hours. Well, I didn’t find anyone so I knew I had to come up with another alternative.
I went into work a few weeks ago and made an appointment with my boss. She already knew about my hearing and vision issues so it wasn’t difficult to talk to her. I explained my situation and made a suggestion of arriving at work between 8:30am and 9:00am and I would work until 4:00pm. It ends up being about the same amount of hours and my tasks are flexible enough that she agreed.
Starting Monday I will go to work in daylight hours and get home before it gets dark. In addition, I can avoid lots of traffic on the road during rush hour. It’s a win-win situation and I’m very thankful that I work for a company that has allowed me this flexibility. Another huge plus for me is that my boys get home from school at 4:00pm so I can be home with them. In the spring and summer when it’s light again in the morning I’ll go back to my 7:00am-2:30pm shift.
I think it’s helpful to approach challenges with several things in mind:
- Be prepared; If you know you’re approaching a challenge, talk about it with family, friends, a counselor, etc.; Think about all your options, even ones that may not seem doable at the time.
- Go in with a plan; If you want people to be receptive to you, come up with a plan to handle these challenges; Do NOT ask someone else to create your plan for you as they don’t know your situation as well as you do; Be creative and think about the end result…and how it can benefit you and anyone it affects.
- Stay positive; Frustration will be your biggest enemy; This doesn’t mean you won’t be frustrated but not all problems have to be solved NOW; Your positivity will be reflected and people will be open and more receptive.
- Keep the lines of communication open; For people who have made accommodations for you, keep them informed; It’s much easier for them to understand what you need if they feel they’re communicated with.
Fall is my favorite season even though the days are shorter. I fully intend to enjoy the cool crisp air, mountain hikes, and autumn leaves. I’ll just enjoy them more in the daytime.