Today is a great day. I just got some of the most amazing news I thik I’ll ever hear in my entire life.
NF2 is a horrible disease that strips a person of everything eventually. There is a 50/50 chance of passing the disease on to your children.
I mentioned before that Isaiah didin’t have it, I felt it. It’s just something I knew without knowing how I knew. But I had him tested anyway for peace of mind.
Results came back today and my precious boy doesn’t have NF2!
He’ll never have to worry about these tumors taking things away from him, wondering what it will be next. With NF2 there are no carriers, so his kids won’t have it either unless it’s another spontaneous mutation.
Yay! No NF2 for him. Praise God!+
This was a bit disappointing. I thought people were going to do a lot better than They did. Instead of the performances I didn’t like, I’ll let you know who I did like.
Ricky Braddy did a fantastic job and I thought “He’s going to make it into the top 12″. Anoop D. (can’t spell his last name) did a great job. He sang “angel of mine” by Monica. I thought it was goingto be horrible, but it wasn’t. I don’t know his last name, but Brent did excellent with his country song. Finally got me a country singer but sadly, I don’t think he’ll go to the top 12. Alexis Grace was great doing a fantastic Aretha song. She’ll go far. TatianaDeltoro, I can’t stand her but she can actually sing. I still wouldn’t vote for her personally, don’t like her attitude. And then we have Danny Gooky (sp?)! Oh dear, he sang Hero by Mariah Carrie and it was absolutely great! I loved everything about it. I was blown away and thought he was the best of the night.
To get through to the top 12, each group will have a top male, top female, and then the person with the next highest votes. I was thinking this week would be Danny and Alexis, and the either Ricky or Anoop.
The results show came, and it had a shocker for me. Alexis was in of course, but then they had michael up there. Now how he got through, I don’t know. His song was not that great. And then the producers tried to worry America thinking that Danny might lose the slot to Tatiana, when we all know he had to have been the highest male vote getter. But, it finally was announced that he is through.
So we have 3 of our top 12 now. Danny, Alexis, and Michael. Who will get through next week?
I still have to raise funds for the ABI. I haven’t mentioned it on here all that much because I didn’t know the best approach. Some say to just come out and ask for it, but that is not the way I was raised. Even while out I don’t speak until I am spoken to. So I guess the way someone was raised has a heck of a lot to do with this.
I have been trying to think of something to do, make, sell, etc. I need something for people to buy or to give them for donating. The problem is that I can’t think of anything and no one is helping me think. T-shirts is not really a good fund raiser in the U.S. right now because well no one is wanting to spend money unless they have to.
It’s not as urgent to get these funds anymore, the plan is to wait as long as possible to remove this other tumor since it will lleave me absolutely and totally deaf and blind. If I am able to get the implant then, I’ll have to live in a silent dark world with only touch to appreciate for 6 to 8 weeks until I can get the implant turned on. If I am not able to get the implant at that time because of not having the funds, then there is no telling how long I could be in this type of world. That scares me very bad. I have to make sure I have the funds raised by the time I go for that surgery. If it grows, since it’s already big it can’t grow much more and still be safe, it will have to be taken care of right away, then I’ll lose everything I have and do not know how to function total deaf and blind. At least if it continues to go slowly, I adapt each day without even knowing it. So it is important to raise the money for this implant. I don’t want to sound desprat, but in reality I am. If I don’t get this ABI, life won’t even be worth anything anymore. I’ll lose every bit of independence, communication because people either don’t know sign or think it takes too long. Sighted deaf people have an advantage here, they can write on a notebook or have others do it. That won’t do me any good if I can’t see what they are writing.
I just need help trying to figure out how to raise these remaining funds, arorund $20,000 dollars. If you have any ideas or suggestions please let me know. You can e-mail me, or leave a comment. Thank you everyone for your support.
Wow. Is this season already starting with the drama, or what?
It seems like there is so much crying, arguing, whatever. They had the top 36 show. Why in the world they are doing 36 instead of 24, it must be this new producer but I don’t like it. We were shown, I can’t spell her name, Joanne pasceli(?) and she made it through to top 36. This girl named Felicia got turned down. Well now, since this top 36 show is prerecorded, now the story has come out that Joanne is in a private relationship with people at 19E which is the same people connected to Idol. So she was disqualified and Felicia took her place in the top 36.
There is a legally blind guy in there this year. I hope he goes far. He has a nice voice too. He did “Home” by Daughtry and I didn’t think it was going to be that great, but he surprised me. There were a lot of past Idol’s songs. Like “Before he cheats”, “because of you”, “home”, and more that I can’t think of right now.
The new voting system, seriously what is this new person thinking messing Idol up like this? Instead of a top 24 we have a top 36. That is weird enough. Usually we have 3 weeks listening to them sing and one or two gets voted off each time but you get an idea for people and that is how a fan base is created. This year the 36 are split into three groups. The f irst week, group one will perform. The top three vote getters of the night will be announced the following day. Those three make it through to the top 12. Same things with groups two and three. That gives us 9 of our top 12. Then the judges pick three people of the 27 that haven’t been picked yet. That gives us 12. I just don’t like this at all. Group one is supposed to have some really good people in it. I can’t think of the names, but I remember when I saw it there were like 6 of my favorites. So only the top three of each group gets through? I don’t know, I think ratings are going to drop.
So, this year looks like it’s going to be odd to say the least. Maybe I’ll complete the season, not sure. Something is telling me to give it up since my hearing isn’t great and I miss a lot of the “drama” and stories and all of that, but I do enjoy the singing aspect of it. We shall see.
It is so great to have my bear back home! He and I are having so much fun. He didn’t forget while he was gone either. He stills knows that he has to stay close by and touch me a lo to communicate better.
He says quite a bit of words now. Words like “bite?” when he wants another bite or wants a bite of whatever you have. “Eat it all” when it is empty. “O?” for hello on the phone to someone or when it rings. “Tantu” when he gives you something or you give him something. “Bye bye” when he hangs up the phone or you leave. “cookie” when he sees you are getting one. “mmm” if it’s good or he likes it. He Doesn’t say “no”, but he signs yes and no. And mor that I can’t think of.
He seems like he is going to be very easy to potty train. He already tells me when he needs a new diaper and whatever he did. He usually tells me that while I’m changing him. I’m hoping to start in on training in a couple of weeks after I am able to go to the store and get some pull-ups and potty seat. Wish me luck.
It’s time for the bear to go to bed. I just wanted to write that he’s home and I’m so happy!
Wow. Hollywood week one is already so full of drama! I just read that Nigel stepped down. Are the new producers thinking that drama will bring more viewers?
There was a girl who auditioned in her bikini. Cara and Paula said no, but Randy and Simon were so testosterone driven to say yes. Seriously, in her bikini? Do people have no respect?
She also made it through round one. I do not know for a fact, because I can not see it, but people said that she came out in this nighty looking thing. So instead of showing off her voice, she is showing off her body in hopes that it will get her farther. If she wanted 15 minutes of fame, she’s definitely going to get more than that. She is the talk of everyone.
She didn’t practice with her group though and then just showed up when it was time. The group did horribly, and Simon told them so. Jasmine Murray made it through though which is good because I really like her. Rose got the boot though. There is some talk about possibly bringing her back for the wildcard, but I don’t understand the wildcard bit. I guess I’ll just have to see how it plays out.
So bikini girl is out! She actually did a country song in her “nighty” outfit for round one. I love country and thought she didn’t do as bad as the judges said. I think Cara and Paula do not like her because of her lack of clothing. I had no idea about what she wears until people tell me. I think the judges should be blind folded. After all, you can’t see the radio? Well, you can see the radio, but not who’s on it.
Cara is a hothead. It’s weird because sometimes she is gentle, and then others she blows up. After Katrina’s group was told only Jasmine made it through, or possibly another person, I guess Katrina said something and Cara got a beep. I can’t hear that wonderful, but I can only guess what she called Katrina.
So Idol is off with entirely too much drama. I want to hear singing, but I guess when the competition of the top 24 begins is when I’ll get my wish. I don’t know how true it is, but I read that the top 12 are going to share a house. Oh boy, even more drama.
Seriously, they need a car for the blind already. Or I just need to have a lot of money to hire a driver.
Today I went to Batteries Plus to pick up a Battery for Edward. I scheduled the ride with paratranswet yesterday. That’s the rules; schedule the trip the day before. So I scheduled it to go there today at 10 and a 10:30 pick-up.
Well Mountain Mobility, the paratranset, picks me up at 8:30. They are allowed to pick you up an hour and a half before your scheduled drop-off. So I get on at 8:30 after dropping someone else off, I end up getting to Batteries Plus at 9:15. My thoughts were, “Oh dear, what am I going to do until 10:30?”
I get the battery that Edward had ordered and I pay for it. Then there is nothing left to do. I had my walker, thank heaven because today was a horrible balance day, and it has a seat. I just Sat near the door and played with my phone, let my mind wonder, all sorts of things for an hour and a half. I called and told Mountain Mobility that I was already ready for pick-up, and she said , “OkI’ll get someone to you as soon as I can.” Well the bus didn’t come back and get me until 10:45.
Sure paratranset is only $2 each way, but it is so annoying because you are wasting so much time.
Tomorrow I have an appointment to see my primary care doctor. The appointment is at 8, and Mountain Mobility called to let me know that they would be here at 6:45. Usually they don’t let people know, but I told them I can’t hear that great and I can’t see at all and I am not going to sit outside for an hour and 15 minutes just thinking that they could show up. So, 6:45. I’ll probably get to the doctor around 7:15 and have to wait until my appointment. All medical trips have to be two hours long, which is stupid in my opinion. so pick-up at 10, right? Well they called to let me know that they would pick me up at 10:25 instead.
It is so frustrating! I am going to waste like 4 hours tomorrow just waiting around doing nothing. I can’t take a book or anything because braille books are huge. If I could afford it, I would just pay a cab so that I wouldn’t have to worry. Sure paratranset might be cheap service, but it’s a headache because of the inconvinience.
Why can’t I drive, have a driver, or enough money to pay a cab round trip? If I did it would take all of an hour and a half, if that, for me to go from my house to the doctor, have the appointment, and come home. Instead I’ll waste yet another morning and then be so tired for the rest of the day.
I have been doing a lot of thinking about my health, and I want to put forth as much effort as I can to try and make it better.
I am one on the overweight side. I plan to get serious about dieting and try to lose weight. I can finally continue taking Bio30 to try to slow these tumors. I recently found an article that a Japenese food helps block or inhibit PAK which is part of the vicious cycle of NF. I plan to start taking the tablet form of this. If I couldnt’ find a tablet though, I would be willing to eat this Japanese food. Like my dad said, “If it’s a cure, who cares if it taste good?”
I stopped taking Bio30 around the time we moved to North Carolina. I was having bad balance and nausea, so I didn’t know when or if I would ever need emergency surgery. You are supposed to stoptaking bio30 2 weeks before and after surgery so that you do not bleed out in surgery and are able to heel afterwards. Now that I know I will not have to have emergency surgery, or shouldn’t, anytime soon, I feel safe resuming taking it.
Yesterday I felt horrible. I had a terrible headache. I had been doing very well and hadn’t even had any pain pills. But yesterday I woke up with a headache and it just got worse throughout the day. Thankfully, it’s gone today. If I still had it today I was going to call the doctor and see what he thought. I was starting to worry that even though I knew it wasn’t a SF leak, it could have been fluid build up on the brain. But today it’s not as bad, so that’s something to be happy about.
For now I am doing well and I go back to see my doctor later this week. Hopefully he gives me the go ahead to lift my son again. I miss him so much. Do you have any idea how boring it is around here without him tugging on my arm, yelling “momma!” He fills up my day more than I think because when he’s not here I just don’t know what to do with myself.
Thanks for reading and I’ll be back to let you know how things are going with me soon.
By the way, I got my comments fixed, so feel free to comment and know that I will recognize it.
So this song that I have always known has given me even more hope this morning.
I was listening to this song while going through my emails. there is the line that says “I was blind but now I see”. Generally everyone takes that literally. Blind, like Holly, and having sight restored. Today, I understand. I was blind to the word but now I am able to understand it and see the meaning.
Since I have been putting my all into reading, praising, studying the Lord, I am getting my mind renewed. I see things differently now than I did even 4 months ago. I do not have some of the same thoughts and opinions. It’s amazing how it all can change without you even knowing.
I know that this is working for me. I am finding peace in the Bible. That peace is carrying over to my life in General. My anxiety isn’t as high as it was before and because of everyone praying for me and supporting me, I am doing fantastic. Sure I get headaches off and on, but I try to ignore them. I haven’t had any pain pills in several days. I was given 3 bottles of pain pills for after the surgery and I only took one.
All I have to say, is Amazing Grace.
