I'm so excited! My big brother, one of my most favorite people ever, is coming to visit before he moves to Italy! He'll be here for about a month, and I seriously can not wait to see him. It is going to be so much fun!
On a not so fun note, I have decided to not renew my driver's license. It is an agonizing decision, but I feel it is for the best. I read some things about glaucoma last night that I never knew. I didn't know that glaucoma can cause a person's contrast sensitivty to lessen. That means that in certain lighting, even though I have a sighted eye, I am totally blind. I always thought that maybe I was imaging things, that perhaps I just wasn't concentrating enough. Turns out, I really DO have a problem with it. When I still had sight in my right eye, I saw colors differently out of each eye. I also noticed that while my left eye became "confused" in certain lighting situations, my right eye would be just fine. Of course, now that I no longer have sight in my right eye, I experience moments of total blindness on a daily basis. It's kind of nice to know that it is not just my imagination, or some lack of wills on my part, but an actual problem. Now that I have identified the problem, I can go about finding solutions, or at least things I can do to make my life easier, and lessen the number of times I experience total blindness. Now I can be prepared.
I'm going to have to apply for SSI. Although I hate to do it, I think it's the only way I will be able to get on Medicaid and gain access to rehabilitation services. Ah well... If it is the only way I can gain access to things that will make life easier, then I suppose I will have to swallow some pride and just do it.
Wednesday, April 14, 2010
Saturday, April 10, 2010
Easter and other matters
We had a fantastic Easter! We got to spend a lot of time with both sides of the family. With Jillian and Serenity (for those of you who don't know them, they are Nicholas' sister and her daughter), we dyed eggs and had an egg hunt at the park. Then we went to Sonic for drinks. After that, we came back home so the kids could nap, and played games after dinner. It was a lot of fun! That was on Saturday.
On Friday, we went to Mom's to welcome the nephews by throwing water balloons at them. It was so much fun!! We had a blast. Little Nicholas just walked all over the parking lot, and Marley had a good time running after all of the kids. Then, for Easter Sunday, we went back to Mom's for an egg hunt, dinner, games, and just fun. We spent a lot of time outside, and it was just awesome. The weather was perfect, and the kids had so much fun.
Have I told you all about Marley? If not, he is the puppy we got after we had to give Princess away. He's very cute, sweet, and fun. He loves the kids, and especially Little Nick. He likes to run along side Nick and nip at his elbows, which Nick just eats up. Marley lets him hug and kiss on him too, which is a bonus because sometimes Nick loves a little too hard. We got Marley from a couple who already had 8 dogs, and then one of them had a litter of 5 puppies! Marley's tail is naturally bobbed, which is a bonus because Nick doesn't have enough tail to pull. Lucky for Marley! Potty training is going well, although we have had a few setbacks. I've noticed that the more time he spends exercising the better he does going potty outside. so we're going to be better about running him around more. It would help if he wasn't afraid of all of his toys! He won't fetch because he's so scared of the toy, he's glad it gets thrown away from him!
On Easter, I realized that I can't find anything. I was looking for Nick's shoes, and couldn't find them. I couldn't look at a group of items and make any sense of them at all. Turns out, my left eye is sending signals to the right side of my brain, which is responsible for "big picture" thinking, not the left side of my brain, which is more conccerned with detail. I can see the big picture, but I can not make sense of the details. I hate this more than most things about my new situation. It's translating into difficulty in other areas in my life as well, such as making it even more dificult to drive. I don't think I'll be doing much, if any, driving any longer. I'm so sad about that, because I love cars and I love driving. Anyway, the only way I can find something out of a group of items, is to touch every single item and move it out of the way. I need to find someone really good at organizing to come over and help me find a place for every single thing, and to throw out things I do not need. My own system of, "It's not a mess! I know where everything is!" is not working for me anymore.
I'll be posting some pictures as soon as I get around to it. My computer is not useable right now, thanks to Marley thinking the charger was a chew toy, so I can't edit the photos. I'll probably post them anyway, because the pictures I got of the kids are just adorable!
On Friday, we went to Mom's to welcome the nephews by throwing water balloons at them. It was so much fun!! We had a blast. Little Nicholas just walked all over the parking lot, and Marley had a good time running after all of the kids. Then, for Easter Sunday, we went back to Mom's for an egg hunt, dinner, games, and just fun. We spent a lot of time outside, and it was just awesome. The weather was perfect, and the kids had so much fun.
Have I told you all about Marley? If not, he is the puppy we got after we had to give Princess away. He's very cute, sweet, and fun. He loves the kids, and especially Little Nick. He likes to run along side Nick and nip at his elbows, which Nick just eats up. Marley lets him hug and kiss on him too, which is a bonus because sometimes Nick loves a little too hard. We got Marley from a couple who already had 8 dogs, and then one of them had a litter of 5 puppies! Marley's tail is naturally bobbed, which is a bonus because Nick doesn't have enough tail to pull. Lucky for Marley! Potty training is going well, although we have had a few setbacks. I've noticed that the more time he spends exercising the better he does going potty outside. so we're going to be better about running him around more. It would help if he wasn't afraid of all of his toys! He won't fetch because he's so scared of the toy, he's glad it gets thrown away from him!
On Easter, I realized that I can't find anything. I was looking for Nick's shoes, and couldn't find them. I couldn't look at a group of items and make any sense of them at all. Turns out, my left eye is sending signals to the right side of my brain, which is responsible for "big picture" thinking, not the left side of my brain, which is more conccerned with detail. I can see the big picture, but I can not make sense of the details. I hate this more than most things about my new situation. It's translating into difficulty in other areas in my life as well, such as making it even more dificult to drive. I don't think I'll be doing much, if any, driving any longer. I'm so sad about that, because I love cars and I love driving. Anyway, the only way I can find something out of a group of items, is to touch every single item and move it out of the way. I need to find someone really good at organizing to come over and help me find a place for every single thing, and to throw out things I do not need. My own system of, "It's not a mess! I know where everything is!" is not working for me anymore.
I'll be posting some pictures as soon as I get around to it. My computer is not useable right now, thanks to Marley thinking the charger was a chew toy, so I can't edit the photos. I'll probably post them anyway, because the pictures I got of the kids are just adorable!
Sunday, March 7, 2010
Poor little Princess
It's been a very busy weekend! On Friday, we got a lot of errands run, and we got a FoodSaver system and a Ninja at Sam's Club. I totally love them both! Our blender burned up (like, smoke and everything!) a few nights ago, so we needed a new one, and I was tired of our meet getting freezer burned. Both very useful appliances!
After about an hour of trying to figure out the FoodSaver, I finally got it to work. Then, 5 minutes into using it, it stopped working and I could just NOT get it to work! Then, I read the instructions again, and realized that it shuts off automatically when it starts to overheat. This is one appliance that requires a rhythm when being used.
The Ninja is freaking awesome! We made milkshakes last night. Nicholas wanted a Cadbury Orange Creme Egg in an orange milkshake, and I decided to make mine a chocolate malt by adding Robin's Eggs to mine. I had the containers pretty darn packed, and it only took three pulses to mis each milkshake. The unit was so quiet, Nicholas couldn't even hear it running downstairs. It's also super easy to clean up. Way easier than a regular blender.
I also ordered my white cane, so that will be interesting to learn how to use. I'm glad that I don't have to go to Washington, DC without one. We saw Alice in Wonderland, and although the 3D effects were lost on me, it was a much better move than I thought it would be. While we were waiting in line to go into the theater, Nicholas needed to go to the bathroom, so I held our place in line. It got very crowded, and people started bumping into me. Ordinarily, this would be unnerving. That night though, it was terrifying. I couldn't see them, only hear them laugh and then feel them bump into me. I just couldn't keep track of everyone. It was a very uncomfortable situation, and I was so thankful when Nicholas got back before I started crying or screaming or both. Why don't people have any manners anymore? I try my best not to crowd people, and if I bump them, I at least apologize.
We got Little Nicholas's hair cut too. I loved his little curly locks, but people were starting to ask if he was a little girl, so I gave in and got it cut. He looks so grown up now, and the shorter hair really has a slimming affect on him.
The most major thing that happened this weekend, is that Princess found a new home. A lady from the Clarksburg area took her home on Saturday morning. I'm totally heartbroken, and the house feels very weird without her here. I know she will be better off though. I hope she understands someday that I gave her a new home out of love. I love that little rascal so much. I am going to terribly miss her.
After about an hour of trying to figure out the FoodSaver, I finally got it to work. Then, 5 minutes into using it, it stopped working and I could just NOT get it to work! Then, I read the instructions again, and realized that it shuts off automatically when it starts to overheat. This is one appliance that requires a rhythm when being used.
The Ninja is freaking awesome! We made milkshakes last night. Nicholas wanted a Cadbury Orange Creme Egg in an orange milkshake, and I decided to make mine a chocolate malt by adding Robin's Eggs to mine. I had the containers pretty darn packed, and it only took three pulses to mis each milkshake. The unit was so quiet, Nicholas couldn't even hear it running downstairs. It's also super easy to clean up. Way easier than a regular blender.
I also ordered my white cane, so that will be interesting to learn how to use. I'm glad that I don't have to go to Washington, DC without one. We saw Alice in Wonderland, and although the 3D effects were lost on me, it was a much better move than I thought it would be. While we were waiting in line to go into the theater, Nicholas needed to go to the bathroom, so I held our place in line. It got very crowded, and people started bumping into me. Ordinarily, this would be unnerving. That night though, it was terrifying. I couldn't see them, only hear them laugh and then feel them bump into me. I just couldn't keep track of everyone. It was a very uncomfortable situation, and I was so thankful when Nicholas got back before I started crying or screaming or both. Why don't people have any manners anymore? I try my best not to crowd people, and if I bump them, I at least apologize.
We got Little Nicholas's hair cut too. I loved his little curly locks, but people were starting to ask if he was a little girl, so I gave in and got it cut. He looks so grown up now, and the shorter hair really has a slimming affect on him.
The most major thing that happened this weekend, is that Princess found a new home. A lady from the Clarksburg area took her home on Saturday morning. I'm totally heartbroken, and the house feels very weird without her here. I know she will be better off though. I hope she understands someday that I gave her a new home out of love. I love that little rascal so much. I am going to terribly miss her.
Tuesday, March 2, 2010
The denial is no longer mine...
I met with the career counselor and disability services people at school today. I hate it when people say, "Hey... it may never happen." The fact is it will happen. I just don't know when. Someone asked me today if it is hard knowing that it will happen, just not really knowing when. I thought about it, and it's kind of like dying... I know it will happen someday, I just don't know when. Can I control it? No, but I can take steps to postpone the day it comes. Denial will get me nowhere. Denial will only make it easy to go unprepared. We are told to live providently, and to make preparations four our physical security. I put this sort of preparation in that category. I have to prepare myself so that when it happens (I really hope I'm an OLD lady) I will not find myself helpless and dependent on others.
I realized that Heavenly Father has blessed me a lot of wonderful tools that will help me. He has blessed me with a mind that remembers in pictures. When my sight is no longer useful, I will be able to look back on the pages of the photo album in my head. He has blessed me with fine examples of people who persevere through worse things. He has blessed me with a couple of wonderful parents that support me no matter what, and a family full of my best friends.
Today we made carne esada enchiladas. Oh my goodness they are SO GOOD!! Homemade enchilada sauce too, thanks to Emeril. Baby girl is asleep, little boy is asleep, and American Idol is waiting.
I realized that Heavenly Father has blessed me a lot of wonderful tools that will help me. He has blessed me with a mind that remembers in pictures. When my sight is no longer useful, I will be able to look back on the pages of the photo album in my head. He has blessed me with fine examples of people who persevere through worse things. He has blessed me with a couple of wonderful parents that support me no matter what, and a family full of my best friends.
Today we made carne esada enchiladas. Oh my goodness they are SO GOOD!! Homemade enchilada sauce too, thanks to Emeril. Baby girl is asleep, little boy is asleep, and American Idol is waiting.
New glasses again?
I had just gotten new glasses some months before, when the teacher sent me home with a note saying that she thought I needed new glasses. After asking me about it, my mom decided to take me back to the optometrist. My vision tested almost 20/200. When my mom told the doctor how I just got new glasses, he decided to test me for glaucoma, even though I was only 9.
To our shock, my inner ocular pressure was in the mid-30's in both eyes. The doctor referred us to an ophthalmologist, and urged us to see her as soon as possible. We saw her the next day. She said that I need to see doctor specializing in juvenile glaucoma, and the closest one was at the Will's Eye Institute in Philadelphia, PA.
My case was very serious, and very urgent, they said. I needed to go on eye drops immediately. I found out that I despise taking eye drops. There weren't many options for eye drops, due to other health problems some of the drops would aggravate. The drops they finally decided on ended up giving me an asthma attack that lasted for hours. Up until this point, I either didn't have asthma, or it was so mild it never bothered me. Asthma would eventually become a much scarier part of my life, but at this point in my history, it was no big deal.
Since there were no eye drops that I could take, surgery was the only option. I had a trebectolectomy in both eyes.
This is when my miracle happened. A week after surgery, and after several 5FU injections into my eye, I was sitting in my eye doctor's office, waiting for her to look at my optic nerves again. 5FU is a cancer drug they used to inject into the patient's eyeball to prevent scar tissue from forming and blocking the artificial drains. When my doctor was looking at my nerves, she was yelling, "Oh my God! Oh my God!" in her Indian accent. My mother and I both asked, in panicky tones, "What's wrong?" The doctor explained that my optic nerved had regenerated. This is not supposed to happen. Once vision is gone from optic nerve damage, it's gone. End of story. Not the case for me though! I went from being almost legally blind to not having to wear glasses at all. This continued for over a year until the "bleb," or artificial drain in my left eye failed.
Three surgeries in the left eye later, I go to the doctor to investigate some strange eye pain. They couldn't decide what was causing the pain, but they did find that the pressure in my right eye was seriously elevated, to 32. Through a visual field exam, they were able to determine that I had quite a significant blind spot in the right eye. I had surgery scheduled for it as soon as possible. It then had to be put off because I found that I was unexpectedly pregnant. One and a half months, and some additional vision loss went by, and I had my second surgery on my right eye. What a rough recovery! It was going to be worth it though, because I was going to be able to keep vision in that eye.
Three months after my son was born, I found out that I was pregnant again. This time it was a girl! Then I started to have asthma problems, and ended up in the hospital, hoping the baby was getting enough oxygen. I had to go on steroids, but since my glaucoma was well controlled, it wouldn't be a problem. Wrong again. The inner ocular pressure was not controlled, and the steroids cause it to go higher, causing permanant, almost total vision loss in my right eye. Now my pressure in that eye is hovering at 38, and causing me to have horrible headaches.
So, now life is different. Part of me knows that the miracle this time will not be restoration of sight, but that there is another lesson to be learned here. Two things I am certain of: God will not ask me to do anything that He won't provide a way to accomplish, and that there is a divine reason I am faced with this. There are many things I can not know, like how much longer the pressure in my left eye will be stable enough to allow sight to remain, what the purpose of all of this is, how I'm going to continue to be a productive person, what life will be like.... the list goes on and on.
Right now, I'm just trying to learn how to deal with it. I'm trying to plan ahead, to the day I no longer am blessed with useable sight in my left eye. This blog's purpose is to give me a place to work through my feelings, and hope that maybe my life can help someone else deal with whatever it is they are going through. It helps to have a place to talk about the little day-to-day challenges that I unexpectedly face... Like how going down an unfamiliar flight of stairs! I totally almost fell down the stairs at Fairmont State today because I thought the steps were deeper than they actually were.
To our shock, my inner ocular pressure was in the mid-30's in both eyes. The doctor referred us to an ophthalmologist, and urged us to see her as soon as possible. We saw her the next day. She said that I need to see doctor specializing in juvenile glaucoma, and the closest one was at the Will's Eye Institute in Philadelphia, PA.
My case was very serious, and very urgent, they said. I needed to go on eye drops immediately. I found out that I despise taking eye drops. There weren't many options for eye drops, due to other health problems some of the drops would aggravate. The drops they finally decided on ended up giving me an asthma attack that lasted for hours. Up until this point, I either didn't have asthma, or it was so mild it never bothered me. Asthma would eventually become a much scarier part of my life, but at this point in my history, it was no big deal.
Since there were no eye drops that I could take, surgery was the only option. I had a trebectolectomy in both eyes.
This is when my miracle happened. A week after surgery, and after several 5FU injections into my eye, I was sitting in my eye doctor's office, waiting for her to look at my optic nerves again. 5FU is a cancer drug they used to inject into the patient's eyeball to prevent scar tissue from forming and blocking the artificial drains. When my doctor was looking at my nerves, she was yelling, "Oh my God! Oh my God!" in her Indian accent. My mother and I both asked, in panicky tones, "What's wrong?" The doctor explained that my optic nerved had regenerated. This is not supposed to happen. Once vision is gone from optic nerve damage, it's gone. End of story. Not the case for me though! I went from being almost legally blind to not having to wear glasses at all. This continued for over a year until the "bleb," or artificial drain in my left eye failed.
Three surgeries in the left eye later, I go to the doctor to investigate some strange eye pain. They couldn't decide what was causing the pain, but they did find that the pressure in my right eye was seriously elevated, to 32. Through a visual field exam, they were able to determine that I had quite a significant blind spot in the right eye. I had surgery scheduled for it as soon as possible. It then had to be put off because I found that I was unexpectedly pregnant. One and a half months, and some additional vision loss went by, and I had my second surgery on my right eye. What a rough recovery! It was going to be worth it though, because I was going to be able to keep vision in that eye.
Three months after my son was born, I found out that I was pregnant again. This time it was a girl! Then I started to have asthma problems, and ended up in the hospital, hoping the baby was getting enough oxygen. I had to go on steroids, but since my glaucoma was well controlled, it wouldn't be a problem. Wrong again. The inner ocular pressure was not controlled, and the steroids cause it to go higher, causing permanant, almost total vision loss in my right eye. Now my pressure in that eye is hovering at 38, and causing me to have horrible headaches.
So, now life is different. Part of me knows that the miracle this time will not be restoration of sight, but that there is another lesson to be learned here. Two things I am certain of: God will not ask me to do anything that He won't provide a way to accomplish, and that there is a divine reason I am faced with this. There are many things I can not know, like how much longer the pressure in my left eye will be stable enough to allow sight to remain, what the purpose of all of this is, how I'm going to continue to be a productive person, what life will be like.... the list goes on and on.
Right now, I'm just trying to learn how to deal with it. I'm trying to plan ahead, to the day I no longer am blessed with useable sight in my left eye. This blog's purpose is to give me a place to work through my feelings, and hope that maybe my life can help someone else deal with whatever it is they are going through. It helps to have a place to talk about the little day-to-day challenges that I unexpectedly face... Like how going down an unfamiliar flight of stairs! I totally almost fell down the stairs at Fairmont State today because I thought the steps were deeper than they actually were.
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