Hi everyone, sorry it has been sooooo long since I have updated. I have been super busy and bouts of depression and just crazy all around.
Mine and Edward’s anniversary was April 16, yay three years now! We went to Asheville North Carolina and had a great time. Edward also had an interview there so we did that and totally love the place! Everyone is so nice, the weather is perfect, and the city is in the middle. It’s not too big like NY but it’s not tiny like Piggott. Edward did get the job though and they said they would hold the position until we figured out my medical stuff.
So, now I have to figure out what to do. We are going tomorrow to Asheville to look for houses. I think Edward going to go ahead and start so that we can be putting back a little money to save up for the fund, he’ll also get medical insurance through his company but House Ear doesn’t take the insurance that he is offered. So no luck there. I wish! So I’ll keep you all informed on that. oh yeah! Nashville, TN said that they would enroll in AR Medicaid and they do the ABI there. Well they lie. I had an appointment for Monday but they can’t get their facts strait so I canceled it. It just irritates me to no end that people don’t communicate.
Isaiah is doing very well. He is 8 and a half months old now, still no teeth! lol. But I think he is teething still, I’m just waiting for one to pop through and bite me. He is also crawling all over the place, getting in to whatever he can, and pulling up on things. Not too much longer and my little boy will be walking!
I go in and out of depression because of this hearing situation. Do you blame me? Ask any of the blind people if they would freak out if they would lose their hearing? They would say absolutely. Now take all the people with NF2 that are deaf, ask them if they would flip if they lost their site? Don’t you know it. So, the next person that t ells me it isn’t that bad I’m going to scream!
Last weekend we had a huge family reunion and a few people bought a shirt and some tickets. Come on people! Buy some of these tickets. Dee-Ann and Yvonne were nice enough to donate the picture and the shirts to me, and now no one is trying to help me? Please Please Please!
Well I am going to fix some lunch and I’ll update later. I’ve gotten about 500 more I think but not certain. I’ll have to count and update with a total next time.
Holly
by Yvonne Foong, on 05.04.08 @ 12:38 am
Don’t worry, be happy!
by Carin, on 05.04.08 @ 11:02 pm
Can I collect up all the folk who are telling you it isn’t so bad and hoof them where it hurts? Most folk who can see can’t stomach even vision loss. Some people haven’t a flaming clue and should just shut their gobs. I”m glad that Ashville is looking like a happy prospect. Maybe there will be more resources there.
by Anonymous, on 05.06.08 @ 12:33 pm
Holly,
I have just now read some of your blog and notice that you are selling some type of t-shirts. Please let me know more about these t-shirts so that I can possibly purchase some. My son, Derek has NF2 and is totally deaf and has an ABI implanted during his last AN surgery at St. Vincent’s in LA. Dr. Brackmann did the surgery. In fact, Derek is leaving this Saturday for his annual visit to Brackmann and Steve Otto. Derek is totally deaf since his last AN surgery in June 2004. His ABI helps very little so far, but he keeps hoping it will improve. I commend you on your tenasity (sic). For someone that is totally blind and has to deal with hearing loss also, you are doing an awesome. We do only as well as we Choose to do. I believe you have chosen to do all that you can do and not be dependent upon others. That is Great! You hang in there and enjoy each day as it comes. I look forward to hearing from you about the shirts. I want to help where I can.
HAVE A BLESSED DAY!
Dorinda
by Rebecca, on 05.06.08 @ 5:40 pm
Holly, I don’t see anywhere on your site where there is an option to buy a t-shirt or what they even look like. That may be why people are not buying them because they cannot find them.
Have you gotten response from Oprah? There are some people hiking/biking across the entire united states from coast to coast to raise money and awareness for NF. They want to get on Oprah too. How did you go about contacting her? It would be great if you can all get on together.
So you contacted OHSU and Dr. Deleshaw and they could not take medicare from AK? I am in Washington state but there must be a NW coverage agreement as OHSU is in Portland.
I too heard crickets early on in my hearing loss for my diagnosis. Some people want me to write a book someday and my husband came up with the title “Can you hear the crickets?” as that was once of the first signs of NF2 before I became diagnosed. I thought hearing them was normal because there are lots of crickets in the midwest where I am from. Then one day it was raining (pouring out) and I was still hearing crickets. I thought one had gotten into the house but I could not find it. I then realized that I had never seen a cricket out in Seattle (I had only been living here for just over a year).
Interesting. You are the only other person I know of who commented that you were hearing crickets (that is the tinnitus/ ringing in the ears).
Who is the heck is telling you it would not be so bad? If it was an actual deaf/blind person I could accept that. There are many out here in Seattle and they do well as we have good programs for deaf/blind people).
If these people giving you this advice do not have a hearing loss and are not blind, what outlandish drug are they on? Who is for someone with no experience to tell you it is all okay? I hate it when people who have not a clue preach. I can totally emphasize to a degree as I am completely deaf and have had visual problems to the point of threatened my vision from a swelling tumor on my brainstem. Things are okay now that I had the tumor debulked but anytime I get double vision or my eyes are blurry I really freak out. I can only imagine how anguishing it must be to face your situation.
On a positive note, when I heard the crickets it was before I was diagnosed. I had hearing for 7 years after the cricket incident so it took time for the hearing loss to progress. So if you base where you are at on that, you may have more time than you are worried about for completely losing your hearing.
Ironically I lost hearing in the ear with the smaller tumor early on (in 2001). I had residual hearing in the ear with the larger tumor until after cyberknife radiosurgery in 2004.
I know this is hard to acknowledge, but you need to cheer up and maximize what you have now. Enjoy all that you can while you have it. Worrying and being depressed takes away the time that you have been blessed with and is not productive at all. The other day I had one of those moments and was cranky and then crying. Then my sister said to me “Live life”. It is true. Live your life to the fullest while you can and then worry about the bridge when you actually cross it.
Hope things start looking up for you! Have a good week!
Beck
by Carin, on 05.06.08 @ 8:03 pm
To see the shirts, go here. Maybe, Holly, you could smuck a shirt ad in with your raffle ad, or something. But there’s the link to the shirts.