`My Dad’s side of the family has a family reunion every year around this time.
I have always enjoyed these reunions and seeing everybody. A lot of music is played, and other things that the family does together.
This year, was a whole lot differet.
Edward didn’t think that he was going to be able to come to this one because he had to work. But, he ended up getting a flight for the weekend so he ould be here with the family but mainly to help me.
I am so very glad that he was here. He told me when someone came over and what they were talking about. he did a lot of signing over the weekend and I am so happy that he did.
Without his signs telling me who was there and what was going on, I wouldn’t have known anything. My mom is the only other one that can sign, and she was busy a lot of the time.
Sadly I couldn’t hear the music that was played. I did sort of pick up on a few of the songs, but not completely. Edwared wanted me to sing a song with him.
“What? I’m deaf, I can’t sing anymore.” He said that I could still sing fine. I told everyone uI was deaf so if I was off key or time not to laugh.
We sang Whisky Lullabye. I felt the vibrations of the music through the guitar and sort of heard him singing his part. Then the song came to memory and I could hear it just like I had no hearing loss.
I sang to the song hearing the music in my head. It sounded right to me. But I know tyhat things can still be off. So afterwards I asked Edward if I sounded weird or off key. He told me that I did really good and was perfectly on key.
That made me happy. I’m deaf, but I can still sing on key! I love music and singing, and it is something that I do not want to lose completely.
We took Edward back to the airport and I miss him a lot. I can’t understand him on the phone. It is very difficult not being able to reach out and touch his hands and find out what he is saying. I don’t think I will be leaving him agan for any length of time. I need him too much.
The reunion wasn’t that great for me. I was in my own world most of the time. I couldn’t socialize with many people, and most of them didn’t even come up to me. I did get to see my sisters and am glad about that.
This will probably be my last reunion for a while. We’ll just have to wait and see.
I wrote about Edward calling the neorologist’s office and hurrying things along to find a neurosurgeon for my spine.
They never did. I’ve noticed that my fingers are losing a little bit of sensitivity. Not a lot, just noticable when I read braille or try to feel something with my finger tips.
Yesterday I called Edward and told him to call the neurologists office again and tell them the seriousness of this.
I mean, really, I am deaf-blind and can not lose my sense of feeling in my hands or I really will be screwed. I
So he called and got a phone number for the neurosurgeon they were referring me to.
I called there today and I have an appointment at Duke in Raleigh on May 6. It’s not too far away, so hopefull they can stop this loss of feeling before it goes any further.
I don’t even know if there is a problem tumor in my spine, but if there is I want it taken out right away. I can’t afford to lose my sense of touch in my hands along with everything else I am losing.
I am finally at peace being deaf-blind.
I still can not hear that great, and can not communicate with people easily, but I am not as scared.
The other day I had noticed my hearing had dropped over night. I told a friend to send out the prayer request to everyone she could.
She did, and that very day I felt the prayers. My anxiety level was back to normal and I didn’t fear losing my hearing.
It’s still a scary thought being completely deaf-blind. But I know that I’ll get through anything with prayers.
It is difficult to understand my parents, and I can’t very well. Mom is having to fingerspell to me when I don’t understand her, and Dad haas to write on my palm.
I really hate print on palm, but it is something that works even if it does take a while. Dad can’t fingerspell because his hands are affected with arthritis and they won’t bend the way they need to to make the letters.
I am managing the best I can, and I can’t wait to get back home where I don’t haved to communicate with anyone except Isaiah and the computer. They are the two things I can understand.
Whoever took it, I want it back now.
It’s getting harder and harder to do tings. I’m not sure if the balance is getting worse because the hearing and balance nerve is being destroyed, or if the tumor is putting pressure on the brainstem causing it.
I was told to watch out for when I start losing my balance. But that is for somewhat normal people. Take the vision away and it’s a whole new ball game.
Since I am blind, then losing the nerve function could cause this problem. I don’t honestly know for sure because, still, I have not gotten an MRI of my brain.
I was sitting outside in a lawn chair. I leaned over to retie my shoe. Not too hard right?
Well my sense of balance is completely off right now, and I tipped over in the chair. All from me leaning over a bit.
I didn’t know I was tipping until I hit the ground.
I didn’t hurt myself, but once again I had that feeling of being light headed and my hearing was even wores than usual.
My dad came over bto help me up and I told him to hold on because I couldn’t hear very well. “Babe, I know you can’t hear well.” I told him, “No, it’s worse than it normally is.”
Within a couple of minutes my hearing was back to normal, still not good, but normal so that I could manage.
I just want my balance back. Losing my hearing is bad enough. Why does this tumor have to kill two birds with one stone?
It is finished! He has risen!
Today is the day that we Christians celebrate the reserection of Jesus Christ.
For me, I like Easter even more than Christmas. Yes the birht of Jesus is important and something to celebrate, but his death and reserection is what means the most to us Christians.
Because of this, we et our salvation and chance to be forgiven. Praise God!
I am in Arkansas now. I got here yesterday. Today I went and had Easter Dinner with my randma. It was a great dinner and I enjoyed seeing everyone again.
Isaiah had fun with all of the kids, adults, and doing an Easter Egg hunt.
Whenever my mom went outside to hide the eggs, it started raining. So she had to hide them in the house.
Isaiah still have fun though. He loves to find things. I guess because I make him pick anything he threw in the floor back up and then ask “Is there any more? find them. vie it to me.”
No matter if you had dinner with a family, hunted Easter Eggs, spent your day in Church, or did somethin else. I hope you had a reat Easter.
My husband is busy most of the time. When he gets home and does what he needs to for himself and his seeing eye dog, it’s after 5 and businesses are closed.
Yesterday when he got home, he could tell I was very discouraged. He asked me for the neurologists phone numbre. I told him and he called.
He demanded an MRI of the brain ASAP.
Again he was told that McElveen would handle that area. He said, “no, McElveen won’t get it until September and that is too long. I want it now.”
With a lot of arguing back and forth, and Edward explaining that an MRI of the brain was supposed to be done every sixth month, the nurse finally gave in. He told her that it was a doctor’s and nurse’s job to do what’s best for the patient. Them putting me off was dangerous. We do not know if a brain tumor has grown so large and is life threatening or not. That is why the scan is needed every six months.
The office finally agreed that they would get me a brain MRI and that the MRI center would be calling me with an appointment.
The nurse was told if we didn’t hear anything from the radiolotgy people within a week, my husband would be calling backto figure out why.
He also found out why I was being referred to another neurosurgeon for my spine.
The surgeon in Asheville didn’t feel confident enoughto handle it. He wanted me to go to someone in a bigger hospital to see what he could do. This doctor specializes in the spine. So we shall see what happens there.
But with Edward forcing his way through, we made a little bit of progress in the doctor situation.
I knew this wasn’t going to be an easy road, but it’s getting harderand harder every day. I am honestly terrified now.
My hearing is worse, yet again. I don’t know what to do anymore. I have no friends, family, no one around to help me adjust.
I can’t even find help from the state services to get sign language classes for me and my family. I am having to figure out methods of communication on my own.
I have NF2. I need an MRI every six months. I havn’t had a brain MRI for over a year now. Doctors won’t listen to me when I tell them that I need a brain MRI to find out what is going on in there. I don’t have another chance for a brain MRI until September, but the MRI isn’t even scheduled yet.
The doctors won’t listen to me. I went to a neurologist here where I live. He ordered a spine MRI but wouldn’t do a brain. Said he was going to let McElveen handle that part. I have several more brain tumors than just the schwannoma, so I am irritated with the response.
I had the spine MRI and he said I needed to see a neurosurgeon. He referrs me to one and I never heard from them. Finally I called to find out what the problem was and why I haven’t heard from them. They lost my referral papers. The nuse called again a couple of days later and said the the neurosurgeon here wanted to referr me to another neurosurgeon.
My legs are getting weaker, and these people are just procrastinating. Putting me off and giving things time to get worse.
I do not know if there is a tumor in my spine that needs to come out or what. No one will give me any answers. I am going down hill and no one seems to care.
Not only for my hearing, but also the facial and tongue nummbness as well is the reason I need an MRI ofthe brain. No one seems to care about this issue I am having either. I am being toyed with and I am not too happy about it.
I emailed Dr. Friedman today. Asking him what I shoulddo if I can’t get any doctors to take my problems seriously. Also I asked him about the right side causing too much damange to the brainstem and that ABI couldn’t be put in. The left side is my last chance andoes he think I should hold on to hearing as long as possible and risk having the tumor destroymy chances for an ABI again, or get it now while not too much damange is done?
Ya know what he said? I suggest talking to Dr. McElveen. Now I feel really alone that no one is caring about me. In my email I told him already of Dr. McElveen’s thoughts and wouldnt’ even order an MRI.
I am so depressed now. I don’t know if I can do this if not even the doctors are willing to talk to me.
I have not lost all hearing in my left ear. But I can tell what nerbe damage the tumor is causing.
It’s not just a hearing loss. The 8th acoustic nerve controls hearing and balance.
It is a weird sound. I do not know if I can describe it correctly. I will try to explain what I hear and how I feel when it happens.
I can be sitting reading a book, or trying to understand someone. It’s not in quiet situations only, or loudness either. It happens in both cases.
My hearing is already muffled, and distorted. But suddenly I heard a sound. My regular hearing doesn’t go out completely, but there is this loud sound. It makes my brain think of a flash of light, except with my ear instead of my eye. It’s very fast. It only sounds once and then goes away.
When I get the sound, I also get dizzy as well. It is a flash sound, and I can tell that it’s never happened before, so it must be the nerve damage.
I think of the nerve like this. You have an electric guitar. That is your ear. The amplifire is your brain. Both of these pieces of equipment can be in good working order, but if the cable connecting them has somethingwrong with it, you will get all kinds of pops and clicks, or no noise at all.
The acoustic nerve is exactly like this. At first your hearing becomes a little less than perfect. When your hearing drops enough, you will start hearing phantom sounds. This is your bodies way of thinking that it can still hear. Once the nerve is damanaged even more, you start losing balance and hearing. The nerve shorts out like a pick up cable for a guitar. That is where I am now.
It is just like the cable connecting my ear to my brain is shorting out and I am getting loud bursts like pops (or a flash). It is very strange to be literally listening to the damange that is being caused and having nothing you can do about it.
Maybe one day, stem cell research will be able to help people with auditory nerve damage. We can hope.
Blind people have things in order for the most part. When that order gets messed up, bad things can happen.
Edward and I always put things back where we got them, and make sure all chairs are pushed in before we leave, things in the floor are picked up so we don’t trip.
I had an aid that was coming to help me with a few house chores a few hours a day. I can do these tasks on my own, but it would take a much longer time and I haven’t learned to take my time and be patient yet. Although, the deaf-blind life will eventually teach me this. She would do things like sweep and mop the kitchen floor, vacuum the living room, and anything else that would be difficult with bad balance.
My first aid didn’t do what she was supposed to. She would just sit around and talk on her phone, or something else that I’m not sure of because I can’t see to find out for certain, and can’t hear well enough to hear what she is doing.
I requested a new aid. They sent another lady that was younger. They told me she could sign. She got here and her voice is right at the perfect tone that I can’t hear at all. She couldn’t sign. I had to hold my hand out and let her write everything. This was especially difficult because she wouldn’t listen when I told her to go slow and big.
She came back the next day and I was going to the kitchen to make my son some oatmeal. The aid wasn’t even supposed to be in the kitchen on this particular day. I get over the baby gate and start walking toward the table. My right leg, which is weak, hits something and that makes me lose my balance even more and I fell.
I didn’t just half way fall. I completely lost all balance and there was nothing to catch myself with. We have an island in the middle of the kitchen. I fell and hit my right cheekbone on that. All of my body weight was falling, and there was nothing that caught me except my face on the island counter. I’m just thankful it wasn’t the corner.
It was the most horrific sound. “Crack!” and then I got extremely dizzy, and my head was roaring. I couldn’t hear anything for few seconds except the roar. Slowly hearing began to come back and Isaiah was crying. I pushed my self up even though I was shaking, to see what was wrong with him.
Nothing was wrong with him. He didn’t fall. He just saw me fall and it must have scared him. I let him know I was ok and didn’t make a big deal out of it for his sake, but I could already feel my face swelling.
I knew this was going to leave a bruise, and I knew I had to go to the dentist later in the day. If anyone sees a bruise on a woman, they immediately suspect the husband put it there. Especially with the location on this one. So I called Edward at work and let him know if I should still go. He said yeah, but wanted to know what happened. I told him that I would tell him when he got home.
I put ice on it for a long time to try to get the swelling down. Then I tried my best to cover it with make-up before I went out. I guess I did a good enough job, because no one mentioned it.
I wish I had someone to take a picture and show you all. The mark is still there. I have a big ugly bruise now, and it ‘s very sore even for me to touch it.
I called the agency that provided the aid and told them I wanted to cancel my services. I don’t want an aid anymore. I will do the chores myself, even if it takes me four times as long. I just have to remember to pace myself and that will make it a little easier on the balance.
Edward was really ticked off because the fall was the aids fault. He asked where the chair was so I told him and he didn’t quite understand. So I went and showed him. He was like me, “what was it doing way over here? What for?” He wanted to know why she didn’t tell me that there was a chair in the middle of the floor. I told him I didn’t know but I had already canceled them.
Why can’t people put things back where they got them? There are so many things that I can’t find because the aids put them in strange places. I found a measuring cup in the pantry, and the bowl down with the pans. I’ll never understand why if they don’t know where something goes to ask and find out. Don’t just stick it anywhere it will fit.
Having help made things harder for me and Edward because we never knew where anything was. We thought about quitting the service for that reason alone. But me falling and hitting my head was the last straw.
