should i give up?

[holly-bear]

I am blind completely and deaf in one ear.  The tumor on the good ear is growing but if i get it removed I will be completely deaf.  House wanted to remove the deaf side and put in an ABI so that when the left has to be dealt with I'll still have a  little bit of hearing to fall back on.  They don't take my medicaid.  I can not get medicare I've tried and they tell me I can't get it till I am 65 and I am nowhere near 65.  I found a place closer and the Dr was really nice.  Wanted to help me.  Problem is his hospital doesn't take my medicaid either.  He tried everything writing to medicaid arguing with the people and didn't get anywhere.  Now I guess he is giving up on me.  The only way I can get this abi now is if I go self pay.  But it's going to be a lot of money!  Does anyone know if there are any organizations to help people like me?  Or maybe charities?  I just don't know what else to do and I've tried everything.  If someone can please help me I'd thank you for the rest of my life.  I'm a young wife and mother and I need this operation done asap.

[OMG16]

Holly-Bear I am so sorry to hear your story.  It breaks my heart that you are suffering.  Don't give up.  I do not know of any charities but others on this site may.  It may be worth a try to contact your local news media and see if they will run a story.  I wish you all the best.  16

[GM]

Holly,

I think 16 gave some good advice there about the TV stations.... 

I'd also suggest contacting your Mayor and Govenor to see what the state can offer you.  You may also want to write this ANAUSA site and see if they can direct you.

Gary

[Boppie]

...just some ideas to get people thinking
Do you live in a town where benefit events are held for people's medical expenses?  Churches and certain business people are very interested in helping people in obvious need.  If you can grab the attention of a newspaper reporter or news anchor person your story micht get the publicity to get things rolling. 

In my state churches and other non profits are allowed (by the state raffle law) to do two raffles a year for people of their choosing.  Rotary clubs and Lions clubs do this sort of thing too.

[tony]

I was sorry to hear of your troubles
and I am sure you are very worried
Understand this : NF2 can really drag you down (all of us, yes ?)
You may may not be completely aware of the options
at the moment
I can put you in touch with one of the organisers of the NF2 Crew
- similar to this group but all-NF2 - they may have alternatives for you
If you want to - drop me a direct note - I will put you in touch
Best Regards
Tony

[OMG16]

Holly-Bear Boppie is right.  I work for a Doctor who does Anesthesia and we have had many patients that have had their bills paid by the local Rotary Club, Churches and other non-profit organizations.  I would contact your local Rotary Club and see if they can help and/or direct you to others in your area.  Boppie thank you for your post it did jog my memory some.

You may also want to write down all of your thoughts, feelings and the proposed treatment in detail so that when you meet with the media or other groups that you make the most of your time with them.  I know that it can get very emotional and you can forget some information that would be helpful to them.

Take Tony up on his offer the more help and more people you have contact with the better your chances of tapping their knowledge.  They will help you with like Tony said treatment options that you may not know of and with the emotional impact all of this has on you and your family. Take care of yourself and please let us all know how things are going we would all really like to know.  16

[sgerrard]

Holly Bear, you should not give up. Who knows, something might work eventually. A few ideas to add to the list:

Department of Vocational Rehabilitation. Many states have one, they provide financial support to help people stay employed. If it will get you and keep you off of unemployment, etc., they might pay for it. While you're at it, look up any other state or federal agencies that provide disability support. For Arkansas, you can start here:
http://www.arsinfo.org/

Manufacturers. Cochlear Corporation has a department that specializes in "re-negotiating" insurance claims and problems. If they can't help, they might know someone who can. http://www.omsinsurancesupport.org/

Organizations. Hearing Loss Associatioin of America, for instance, might offer assistance, or good leads. They have links to the Better Hearing Institute, Starkey Hearing Foundation, Easter Seals, Lions Club International, Audient Program, Quota International, Sertoma International, Dorothy Ames Trust Fund, Optimists Club, and the Hope For Hearing Foundation And Hearing Aid Bank, among others.
http://www.hearingloss.org/support/financial.asp

You are not alone, there are people in the world who care, and if you stick with it, some one will step up to the plate for you.

Best of luck, Steve

PS: I would vote for CK on the good ear, but that is just my preference talking.

[OMG16]

Steve can you send me a PM with any info you have on Vocational Rehab my son is just starting the process and I would like any info you have.  Thank you 16

Holly-Bear can you let us know if this info is helping you and what you decide to do.  Hang in there we are all pulling for you.

[Boppie]

Holly-bear,  Yes, keep digging and let us know what helps from here.  I am waiting to hear and send my prayers.

[tony]

Just a further thought
On the side that does have hearing
a gamma or cybernife treatment may slow or stop
the tumour for ten years - and preserve the hearing
that is currently live
(there are no gtees here but the going rate seems to be about
40-40-20 over this time frame)
- the question then is really to find an experianced radioteam
that does take your medical insurance
Best Regards
Tony

[holly-bear]

Thanks everyone for your advice and support.  I will call a lot of these places Tuesday.  I've spent the last 2 weeks for sure on the phones all day every day.  I'm supposed to be enjoying my son in these times but I gotta get this mess figured out.  I've argued with Doctors, hospital, medicaid, supervisors, dhs, services for the blind, emailed the govaner, emailed the presidential candidates.  Tuesday I'm going to contact a lot of these places mentioned and also go the govaners office in TN and CA and see if I can get anything done there.  Contacted a producer in L.A. as well and see if they can help me pull some strings.  I haven't taken it to the media yet, that's going to be my last resort.  I don't want to burn bridges and make these doctors mad then they won't help me even if I do come up with the money.  I've also talked to a few churches and had no luck so far but I'll keep trying there.  I am a memeber of the NF2 crew Tony thanks.  They all can't figure out why no one will help.  It's a messed up situation!

[Kaybo]

Holly~
Hello!  I've read this sight (even though I know it was written a while ago) and your blog.  Did I understand that your hubby is blind too and not working?  You said you would have to move to get a job for him -- is there family that is helping you that is keeping you at your current location?  If I were going to go with the media, I would go big -- I would try Good Morning America, Today, Oprah, etc.
Good Luck!
K

[holly-bear]

Yes, husband, Edward, is blind as well.  He doesn't have NF2.  Was just born 3 months early and the doctors messed up and gave him too much oxygen cand caused blindness.  He is looking at a job in NC we are going out there in about a week to tour the job and the city and see if we like it.  My parents is what was keepign me here.  They guilt trip me every time i try to leave.  But this time I gotta do it if Edward wants to because he is determined to get out of this little town.  there are no oppertunities for the blined.  Not even transportation other than walking and even then no sidewalks. 

Some of my fire for fighting for this has fallen.  I've tried so much and get turned down everywhere.  No one, absolutely no one cares about me or what will happen.  All they care about is themselves it seems, like my so called friends even.  Also, I find this very strange.  No offence to the people in Africa or other places like that, but all the people in high positions are worried to death about helpign kids in Africa and stuff.  75 million to go to Africa.  I've found a lot of orginizations that help people.....in Africa.  What about me?  take care of the people here in your own country too.  Just my rant for the day.  IO have no clue how to get the money and my hearing is starting to go.  I've spent the majority of my time lately just crying.  I don't know what to do and I'm running out of time.

[kippy6]

Don't ever give up! You were put here on this earth to help someone. You will be able to help someone else by forging through, and helping yourself. Spend time with the Higher Power. Seek and you will find. Don't give up. You have a mission. You have a cause. What you do now could help so many others who travel the same road as you, now and in the years to come!!

If I were in your shoes, I would be thinking about the Africa thing in the same way. But think about how that all got started. Media, Awareness, Education. The public just isn't as aware of the need. Bring it to the public. Repetition is key. If at first you don't succeed, try, try, again. You know it's important. We know it's important. But sometimes people just need to hear it a few times (from a few different angles) to let it sink in, to keep it in their memories, and to make it their mission too.

P.S. I PROMISE you that you have more people who care about you than you think. I'm one of them.

[Omaschwannoma]

There's no "truer" statement than "The squeaky wheel gets the grease!"  Keep needling, pestering, sqwaking, calling, etc. and good luck in NC if you so choose!  (Sounds like parents are sqeaking about your leaving, are you greasing that squeak?)