Hopefully not, but OW!
A cold has been going aroun. I noticed yesterday that I was getting a sore throat. Today my nose is stuffy, my eyes and roof of my mouth leading to the sinuses are stinging.
I also have this wonderful headache that will not go away even if I take medicine for it. I want to say it’s because of this cold I have, I hope.
The only concern I have is something happened tonight to make me think that no maybe it’s not because of the cold. I was sitting at my computer and I got very “spacey” feeling. There was no reason for this. I also had neon lines going every which direction in my vision. I am totally blind, usually all I see is black. The neon lines were a new thing for me. The only other tine I saw neon anything, was when I had that huge tumor compressing my brainstem 9 years ago.
I have sent my latest MRI to Dr. Friedman and will find out for certain how quickly this tumor needs to come out. I pray it doesn’t have to be as soon as the doctor at the University of Arkansas Medical Sciences said.
I know it has been a long time since I have written, and I’m sorry. I have just been so occupied with all of these phone calls.
I am not able to use the phone anymore, but I have Edward call and get what I need (or try to). I was trying to get into a drug trial for NF2, and they never called back. He called every day. They finally called back and told him that the trial was full. Lovely eh?
A couple of weeks ago I had Isaiah’s birthday party. He had a blast, and I think all of the kids did. We had a tractor piñata and that went over great. I’m sure someone has pictures of all of the kids trying to break it, I will have to ask and if someone has it then I can put it up here on my blog.
Things are so hectic in my life right now. I have doctors that can’t make up their mind when to remove the schwannoma, looking for trials, playing with Isaiah, trying to communicate with everyone, and so much more. I have found another drug trial and I hope they get back to me soon. If they don’t, I will call and call and call until someone pays attention.
I’m trying to do anything before the tumor is removed because after that there will be nothing that can be done. I hope these people get back to me soon.
I know my body extremely well. When something is wrong, or just a little off, I know about it.
I told several doctors in Asheville that things were getting worse and I needed an MRI of the brain.
Every doctor I went to just passed me off to the next doctor, or were “toying” with me, basically telling me that I didn’t know what I was talking about.
With NF2 an MRI is needed every 6 months or 12 months if things have been stable.
My last MRI of the brain was March of 2008. I really needed another one to see where things were at with my tumors. The tumor on my left hearing and balance nerve was already quite large. I needed to keep a close eye on this one in particular.
I tried several doctors in North Carolina. I even went to a couple of neurologists to get them to order one, but no one would.
I got tired of none of the doctors listening to me, and my health had gotten much worse. That is the main reason I came back home.
Today I had an MRI and an appointment with a neurosurgeon.
He was a good doctor and I liked him lot. He took his time with me with Edward and my Mom having to sign. They kept switching back and fourth when I didn’t understand one of them.
He said that the left side tumor is much bigger. “How big is that?” He laughed and told me “Big.” Then he measured again to make sure and told me.
My left acoustic neuroma/vestibular schwannoma was 2.8CM 2 years ago. Now it is 4CM and is the reason for the balance problems, and possibly the numbness in my fingers.
I also have had difficulty swallowing at times. I want to swallow, but I can not make the throat do it when I want. This is another sign to watch for with the tumor pressing on the brainstem.
The neurosurgeon wants me to have surgery now to remove the tumor. I told him that I was going to have it done at House Ear so that they could place an ABI.
He told me to have that surgery pretty soon and he would meet with me in a few months to see how I am doing, and see if there is anything else that needs to be tended to.
I’ve e-mailed Dr. Friedman and his nurse. Now I have to wait for a response. If they want all of the money up front, I don’t know what I will do because I don’t have it all. If they let me make payments then my parents could help me along with fundraising support.
I don’t know how to make it more clear, I need your support and your donation. I would not be asking if it wasn’t necessary. This is my only way of ever being able to hear again, even the smallest noise will be so important. I won’t be able to do this without your help.
My health has gone down hill. Not only am I deaf-blind, but I am also now physically impaired.
I fall several times a day. I got to where I was walking while basically hugging the walls. I knew if I walked that way and fell, I wouldn’t fall as hard and hurt myself.
I started using a wheelchair while outside. I didn’t feel safe walking on my legs. I knew that if I fell outdoors, I could do some serious damage.
The wheelchair I was using was a manual wheelchair, which is fine except the fact that I can’t do it on my own.
In order for a blind person to know where they are going, they have to use a white cane. Using a manual chair, my arms were busy and I couldn’t use my cane. Edward is blind as well so he couldn’t push me. I had to have someone sighted go with me and push my chair.
We decided that a power wheelchair would be best for me. Then I could steer the chair with a joystick and use my cane in the other hand. Doing this I would finally have independence again!
Only, the wheelchair store we went to refused to give me a chair because I was blind. I was told that “blind people can’t see where they are going. You might run into things or people and you could really hurt someone with a power chair.”
I explained that we use canes to make sure we don’t run into things or people, and some of the guide dog schools even train guide dogs to guide a power chair. Why would t his be in place if blind people didn’t have and use power chairs?
Finally, I went to the doctor and he prescribed a power chair but the venders they tried would not give a power chair to a blind person. Finally they said that the only way they would give me a chair would be a companion chair.
This still wouldn’t work for me, because that would be someone else driving, and Edward can’t do it since he would have no way to use a cane. I would still have to have someone sighted with me, and if I wanted it that way I would just use a manual.
I decided to look around on the internet. One of my friends has a power chair and I test drove his and liked it. I found one like it and bought it second hand, that way no one could tell me I couldn’t have it.
It was very cheap and I got one heck of a deal. But now I have safety and freedom. I don’t have to wait for people to take me somewhere now, even a place as simple as the bathroom.
I could get places fine, I knew how to get there, but my balance was so bad that I couldn’t safely get there on my own without falling.
Denying a person a power chair for the simple fact that they are blind is discrimination. It’s a liability issue. They do not want to be responsible if you “hurt” yourself. Anyone can hurt themselves, blind or not. Will I fight them on this for discrimination? I’d like to because I don’t want to let them get away with it, and maybe I can help someone else having the same problem get a chair. I don’t know if I have time to fight them on this though. With fundraising and my health, I don’t have a whole lot of time left over. I may contact the ADA lawyer my friend knows and see what all it would take before I decide.
I’m just happy I have my own chair now. Driving it isn’t too hard either, although I have to get used to my new size since I am not usually this big. I’ve noticed in just one week I am getting more used to it, so it shouldn’t take long.
Giving Holly Hope
Holly Alonzo is a young wife and mother.
Holly, her husband, and son
When she was 13 years old she was blinded by a brain tumor. This tumor nearly took her life. She is very fortunate to still be alive today.
Holly Has been diagnosed with having a rare disease called neurofibromatosis2. This disease causes tumors to grow anywhere along the nervous system, but especially on both right and left hearing and balance nerves.
Holly has already had surgery to remove one of the tumors on her right hearing and balance nerve. The only hearing she has left is on the left side. But that side has a tumor on it as well.
She needs to have this tumor surgically removed as well to prevent this tumor from ending her life. Doing so willleave her completely deaf-blind. The only chance to any hearing at all will be with the auditory brainstem implant.
These implantsare only done in a few locations in the world. Her insurance will not pay for sucha device since it is out of her area. She needs your help if there will ever be any chance for her to hear her little boy as he is growing up. The smallest sound will be so important to her.
If this touches your heart, and you would like to help this young lady out, please donate to help her keep some hearing to be able to continue to hear her son call her mommaand her husband tell her he loves her. Held give Holly hope, by allowing her to hear the world around her.
How To Donate
To donate to Holly’s surgery fund, ou may send a check to:
Holly Alonzo
P.O Box 291
Piggott AR 72454
Or you can donate online by clickng the donate button below.
If you can donate at all, ev en a tiny bit, it would be greatly appreciated. Help this lady get the medical treatment she needs.
