Thinking of my situation, you wonder what it is that can help me. I’ve been wondering the same thing. I know that the ABI will help me, when it comes to it. But what can help now?
Going out is incredibly frustrating. Imagine going to the doctor but not being able to understand what is being said. You didn’t have this problem when you scheduled the appointment, so you didn’t request an interpreter. Not to mention interpreters sign too fast. When a person can only fingerspell, then the interpreter doesn’t do much good.
I went to the doctor last Monday. I couldn’t understand him. I started crying in frustration. No one knew what to do. They didn’t know sign and I can’t just pick up a piece of paper and have them write. I have to have things in braille, and I don’t have access to that kind of portable technology that a sighted person can type and me read in braille.
I finally held out my hand and asked the nurse to write what she was asking me. She wrote small and fast like you would on a piece of paper. I told her that I couldn’t understand that. I needed her to go slow and really big. Finally I got the message that I needed to pay the co-pay.
This method is called Print on Palm (POP) but it’s incredibly tedious and I can’t always understand. I just recently started trying it, and I have gotten a number of things wrong. I haven’t had to read print in 9 years. Now I am trying to read what people write on me tactiley. It’s not an easy task, and I hope either I can figure something else out to make communicating with the public easier, or eventually get better at POP.
So What Can Help me? There are a few ideas that I’ve been tossing around. One of the ideas would involve a surgery to decompress the ear canal. The tumor would be given more room and even though it is very large right now, the tumor would let some pressure off of the hearing nerve and stop strangling it. This would possibly improve my speech recognition a bit, even if it was only for a short time. I am interested in quality of life, not how long it will last.
Another idea that I think will be worth looking into, is chemotherapy. As far as I know there are only 2 or 3 doctors in the U.S. that do chemo for NF2. The chemo will hopefully shrink, or at least stop, the tumors. There is a doctor in Boston that I want to go see. I am just checking with medicaid, trying to see how I can get this paid for.
With the things I am currently dealing with, anything should be tried to try and save or restore my hearing. If I had vision, it wouldn’t’ be as bad. But I don’t, and my hearing is all I have. I have no support where I currently live. I am having to figure out how to be deaf and blind all on my own. It is very hard, and if chemo could possibly help me, I need to try it.
If all of my attempts to keep my hearing fail, then the last hope will be the auditory brainstem implant. I just hope that I will be able to get it when the time comes.
Remember me writing once that my face was still numb in a certain area? It started whenever I had my wisdom teeth removed.
A small area about an inchh wide, starting at the inside of my cheekbone and going down to my upper chin. My top and bottom lips are numb too.
It’s not entirely numb, it’s just weird. If you poke it or pinch it, I will feel it. When you run your fingers on it I do feel it although it is a different type of feeling.
I’ve gone to a neurologist for this problem. He didn’t seem to want to do anything about it. He would just let Dr. McElveen look into it.
The numbness feeling has spread. Now it is not only the small area on my face and lips, but the tip of my tongue and the roof of my mouth as well. There is a problem and I have to figure out what is causing this.
The doctors keep putting me off. Dr. McElveen said he didn’t know what it was, but it wasn’t a tumor. This neurologist is going to let McElveen look into it when he really isn’t going to.
O go see a neurosurgeon in Asheville soon, and maybe he’ll try and help me figure out the problem. I’m just sick of this strange feeling.
Sunday morning we lost a dear friend. She for sure be missed.
It was our vocational rehab councilor with the services for the blind. She and I talked a lot and would go places together. She would go to schools I wanted to obtain more information on to see if I wanted to attend there, and she would go and talk to the directors herself to see how accessible it was going to be.
Becky was totally blind as well. She knew the challenges that a blind person has getting into a school and obtaining a job. It can be done, of course, but sometimes it takes a really strong fight.
Edward called and told me yesterday. “What? Becky?” It was a shock. I couldn’t believe it. Infact, I still have a hard time believing it. But it was true, I even spoke to my deaf-blind specialist that works at the services for the blind also, and she confirmed it.
Friday evening Becky was with a friend in a car going to dinner. Another car hit them and Becky didn’t die immediately. She had very severe injuries and was taken to the hospital. Her seeing eye dog got thrown from the car whenever they were hit.
Some generous person saw the dog laying there in the street hurt, so he/she picked it up and took it to an animal hospital. This person never even knew Becky or her dog, but was there to help anyway. They wrote a check to the vet and told them to do whatever they could.
Unfortunately, nothing could be done. The car accident or being thrown, had broken the dog’s back andthere was no way to repair it. I’m sure the dog was suffering a lot with all of the trama and injuries it had to its own self. The vet had to put the dog down. It’s sad, but that’s the only thing sometimes that will relieve the dog’s suffering.
Becky’s injuries were so severe, that she passsed away Sunday morning. She survived a little over 24 hours after the accident happened.
It’s such a shock and I can’t believe she is gone. I can’t call her anymore, or send her an email to see what she thinks. It is going to take a while for me to get used to. All of Becky’s family and close friends are in my thoughts. This has to be a difficult time, especially since it was such a shock.
It’s been a while since I have wrritten. I felt completely terible for the past several days.
I finally got around to going to the urgent care because I didn’t know how much more I could deal with. It’s hard being sick and taking care of a baby. I never could go during the day because I couldn’t find a baby sitter, and I didn’t feel like lugginig around a car seat after taking a cab. I could not get a ride from anyone either.
One day when Edward got hom from work we all went. I needed him to go and be my ears, and he also had to take care of the baby since we still could not find anyone to watch Isaiah.
It turns out that the reason I was feeling so terrible is because I have strep throat, and on top of that the flu. My throat did feel like I had swallowed a piece of glass, but I’ve never had strep throat so didn’t even think about that. My muscles ached so bad and I didn’t want to move.
The flu is over now, but the strep throat continues. I have another week of antibiotics to take for that.
My ears heart constantly. There is no ear infection, it just must be part of the strep throat. I thought my hearing was getting worse because of an infection, but I’ve pretty much given up on that theory.
I can hear people talking, but I don’t have a clue what is being said. Even my husband now had to speak directly into my ear. Any farther than that and I can’t understand him. Even when he is talking into my ear I have trouble understanding him. He has to slow his speech down, which he doesn’t always remember to do. Even if he does, sometimes I still don’t understand what he is saying.
Losing my hearing is killing me. Is the re hope? Will I ever be able to get the ABI? When and if I ever do, I’ll still have the 4-10 weeks of total silence after the surgery waiting for the ABI to be turned on, and prayiing that it will work.
Losing a sense is never a fun thing. I’ve already done it, and it looks like I’m about to lose another sense completely. All I will have left is taste, touch, and smell. It is a depressing fact of life for me, and I just have to keep trying to make it the best I can.
I need to finish my book so I can raise more funds. At least, I’m hoping it will make htfundraising easier. This is my only hope at having a bit of hearing and I can’t give up.
Will this roller coaster ever end? I’ve been on it long enough.
This is what my hearing feels like. Some days are good, and some days are bad. It gets better for a while, and I am thankful, and then a few days later I can’t understand anyone it seems.
I find myself living more the DB way (Deaf-Blind). I don’t know all tips for DB, but I’m having to figure them out without a choice. I don’t even realise I’m adapting somethingk until someone asks me how I do something. I don’t know any special way to do things, I just do what what works for me.
I have one major issue right now. Asheville, I like it here. I like the people, and the weather, and that things are available, but I hate the mountains. They are so hard for my balance. Just a slight slope or hill can throw me off tramendously. Also, there is no support forthe Deaf-Blind.
Usually when a DB goes out, he/she takes a SSP with them. This person isn’t an interpretor, but acts as a DB’s eyes and ears. They will tell you what is going on aroundyou. It might not seem important to most people when they let you know that someone beside you is laughing, but hearing sighted people get to be aware of this, so the DB has the right to be aware of it as well. Also this person will bridge the communication for you. Like when I go to the doctor, or basically anywhere, I know what I want to say, but I can’t hear the receptionist, person behind the counter, etc. So it’s very difficult for me here in Asheville. I need to go somewhere with good support for the Deaf-Blind. Because like it or not, I have to live that way now.
I know that things are going to get better for me, but it’s hard to believe this whenever I see things getting worse. The only thing I can figure out is things are going to get worse before they get better. I just have to hold on on this roller coaster and not fall off.
I feel like my mind is going in many different directions. There is so much I want to do, but not enough time.
I am working with Isaiah trying to teach him sign language. He doesn’t really seem to care about it. He will sign though, I found out, just not in my hand. I am also starting to potty train him. He knows when he needs a new diaper and will tell you, but he thinks sitting on the potty is for the heck of it and won’t do anything. It’s only been a week, so maybe it will get better soon.
I am working on writing a book, and I just realized that I left out a big chunk. I thoughI wrote it, maybe it was only in my head. So I have to go back and figure out how to change the lay out to make it fit. Whenever I get this book finished and copywrited and have some copies available, I will let you all know.
My hearinig has taken another turn for the worse. I know it’s getting worse, I can hear it getting worse, but I msut keep the faith. No matter what, I have to believe that this is going to get better. Somehow, someway, it’s going to get better. I’m hoping that it’s only gotten worse because I’ve been sick.
I can’t communicate with anyone it seems. Even when my husband is right beside me talking into my ear, I can’t understand him a lot of the time. It’s very hard to talk to my parents on the phone because I can’t understand what they are saying. So now I just talk a little bit and mostly let Isaiah talk to them.
I have been wanting to get a pacmate for a while, and I think I am finally going to get one. If I do, then there is a face to face software that I can get that would make my life so much easier trying to hear people at the doctor’s office such as receptionists, it will just help me in a lot of areas of my life. So let’s keep our fingers crossed that I can get one.
Isaiah is wanting to play. So I better get off of here before he decides to unplug my computer again.
Kids, gotta love ‘em!
