HollyAlonzo – Never Giving Up Hope

I do not know why things have to be so difficult.  I have been trying to sign up for a MySpace account.  All of my highschool friends eem to be on there and nowhere else.  So I decided I would finally sign up.

Huge problem!  While signing up it asks for me for stupid verification code.  There is no audio link for this and even if there was, my hearing is too bad.  So I emailed them and asked them how they suppose I get an account set up if I can’t do the verification code?

I never got a response back from them so I had a sighted friend help me with this.  She set the account up.  Great, then I got an email to confirm it.  I clicked on the link in the email…

Yet another verification.  Just great.  So yet again, I have her click the link in the confirmation email.  She enter the verification and is able to log in and out of my account with no more verifications.

So I am all excited now, it’s going to work!

Wrong!  It asks me for an evil verification code.  So I have another friend log in, and she gets the verification request too but once she does that then she doesn’t have to do it again.  So it appears to be that when you try to log in from a different computer, a verification code is needed.

I finally heard back from MySpace and I seriously think they need to get a dictionary and go over the definition for “blind”.

They tell me that captias are there for a reason to prevent spam.  Also I can change it one I log into my account, that captias are needed to comment, add a friend, and so on.  But if another person has their settings that captia is needed to add them, then I would still have to do the captia.  I just “need to read it slowly and type carefully.”

So there is a program for the visually impaired that works with Firefox and will help solve a captia.  It is called Webvisum  So I get that all installed and that is a headache within itself because of cookies.  So I get it all set up and go to log in to my account that a friend created.

Verification.  Got it, my program solved the captia and I pasted it in the box.  It went to another page, but nothing was different.  It was just asking for verification again.  It didn’t give me an error, but it didn’t let me in either.

Cancel an account and set up an account again.  In order to cancel you must click on a link in an email and that blasted thing wanted a verification code as well.

I tried to create an account with another email that I have.  All is well until it gets to the verification code.  Even though I have a code and put it in, it will not let me create, log in, cancel, anything.

This is wrong on so many levels.  How is MySpace allowed to get away with this?  Blind people, and there are quite a few of us, have the right to create an account to.  One of the things that every place tells you is do not give out your password.  Well in order for a blind person to either get an account created or need help within the account, we must give our password to someone.  I trust the person I used.  But what if she ever decided to get mad at me and log into my account and do stuff?  This would not happen, because I trust the person, but I am just saying what if.

Do any of you think this is right?  So now I can not get an account on MYSpace and I don’t know what to do.  I am just extremely irritated at the moment and if they had a phone number I would call them and tell them all about it.  But they only seem to do email which takes two days for them to get back with you.

MySpace is being pure evil to me.

I’ve been reading Yvonne Foong’s blog. She is able to raise funds for her medical issues with no problems. She says she needs help and she gets it. It might take a little time but it’s amazing how many people actually support her.

Yvonne is a sweet person and I have a lot of respect for her.  But I can’t help feeling jealous.  I reached out for help last year.  I assumed it would be easy enough because I have so many friends and family and they could help by spreading the word as well. 

I was wrong.  It is no where near easy.  A year later I still only have raised approximately $10,000.  Here in the United States, that is not all that much.  As many people as there are in the world, just $1.  I needed $30,000.  Shouldn’t be too hard to find 30,000 people out of billions in the world, right?

Well it is hard.  Today’s age is skeptical.  A lot of people would not buy raffle tickets because they thought it was a scam.  Others did not donate because they said, “I’m sure others will help and you’ll get enough.”  They left it up to others, and when everyone is waiting on someone else to help, nothing gets done. 

People may think I didn’t try and that is why I didn’t receive enough help.  But I did.  I wrote letters to Oprah, Senators, State Representatives, the Governor, even the presidential candidates.  I didn’t get one single response from any of these places except the governor’s office but there was nothing they could do.

The fact is, if you don’t fit into their plan they don’t care.  Only when they can use you to boost themselves will they help you. 

I am not being rude or negative toward anyone here; I am just stating how I have tried and I do not know how Yvonne gets the kind of support she does.  I do know that Asians are more generous.  I had many Asians donate their dollar to me.  Only a few select Americans donated to me that were strangers.  I did receiver quite a bit of donations from Edward’s family, friends of mine, and some of their relatives.  My mom did put a lot into the raffles and many people at her work supported that.  So there are people that did try to help me.  A friend donated her picture to be raffled, another helped me with a design.  I can not list things that everyone who has helped me has done, but there have been those who helped either by donating or donating there time and services.  Yvonne even donating some t-shirts to me, but only a couple of people bought any.  Granted I didn’t have the correct size for a few that wanted to buy one.

I was just hoping for help and support from everyone.  I mean all people are scared of being deafblind.  If you ask any sighted person what they are afraid of the most, most will say losing their vision.  If you ask any blind person what would be the worst that could happen to them, most of them would say losing their hearing.  Since I am in such a grave situation here I thought that there would be a ton of people willing to help even out of sympathy.

I am finally able to get the surgery I need.  It will not be with the doctor I originally hoped for.  But because of this contact with Dr. Friedman, I found out that Dr. McElveen is very experienced.  But if I could go to Rick Friedman right now, I would.  He is the most caring man in the medical profession in my opinion.  No doctor has ever done for me what he did.  I have had a lot of bad luck with doctors, and I’ve gotten no explanations from them on why something is the way it is, or what happened.  Dr. Friedman was willing to help me out of his heart, talk through my fears with me and clear up any that were unnecessary, and willing to go out on a limb for me and try to get as much help for me as possible from his clinic and the hospital.  I love that man and as I said, if I could I would go next week and get the surgery with him.  But I do not have all of the funds.  I would have to have it all before I went in for surgery at St. Vensants in order to pay the hospital because they are waving so much.

In Raleigh the situation is a little different.  I have this state’s Medicaid so they are working with me a bit more.  If I would have lived in California and had mediCal I don’t believe there would have been any problems, but I don’t live there and I don’t have MediCal.  The cost of the ABI is still in question, but the doctors and hospital are willing to work with me in any way.

The doctor told me that I would get my ABI but Medicaid told me that they will not pay, I do not know if I’ll be able to get it.  I will find out during my pre-op appointment.  At that time I’m hoping that even if they tell me Medicaid won’t pay, they’ll will still put it in and allow me to make smaller installments that I can afford for once the donation money runs out, unless people continue to help me get the funds.  But with or without the ABI, I need this surgery to get pressure off of the brainstem. 

I just want to say a special thanks to all who have supported me, even by spreading the world.  It means a lot to me.  I’m just jealous or disappointed that others get so much help but I couldn’t. 

This whole article is my opinion only, and I never meant to hurt or offend anyone.  If I have, I’m sorry.  That was not my intention.

Something occured to me today.  Is my faith strong enough?  What I mean is, when I ask for something, protection, somethingi to happen from God am I certain I am going to get it?

Here is a little faith story.  I could not get pregnant despite trying for nearly two years.  I was depressed all of the time because I wanted a baby.  I would see others with a baby and get sad all over again.  Everyone was getting pregnant except me and I actually wanted to…they didn’t.

Oneday I am not sure what kicked my faith into gear or not but I had it set in my mind that that month would be the month.  Ihad been praying about it and I put it out of my mind just knowing that it would work.  I never could before so I am not sure what made me able to do it that time.  I was very sick with bronchitis but of course I hadn’t gone to the doctor to be diagnosed with it; I just knew I had it by the symptoms I was having.

Edward would tell me to take all this medicine for my cough and all but I would refuse.  When he asked me why?  Simple, “it’s because I’m pregnant.”

He told me there was no proof and I hadn’t even missed a period yet.  I told him, “Yes but I just know.  I’m pregnant.”  He asked how I “just knew” I told him simply that I had prayed for it.  He couldn’t wrap his head around why I felt so strongly about this and told me I was being crazy “you’re not pregnant, “what are you going to do if a test is negative?”  Easy answer, “the test will be wrong if it’s negative.  I don’t care what any doctor or test says, I am pregnant.”

So on the 28th day of my cycle I couldn’t wait any more.  I wasn’t even going to the doctor for the pregnancy test but the bronchitis was getting really bad.  While I was there the pregnancy occured to me.  “oh yes, one more thing.  can you do a pregnancy test?”  He asked me if I had missed.  I said, “no but I know I’m pregnant I just want confirmation so my husband will believe it too.”

This doctor had ordered many pregnancy tests that were all negative.  So he thought I was a little off the wall too since I hadn’t even missed.  I could tell he was thinking, “she should give up for a while.” But I insisted on having a test and then told him, “well it doesn’t matter if you do it or not, I just wanted confirmation.  I already know I’m pregnant.”

He did the test.  And low and behold.  Holly was correct.  I came home and told my husband and he was shocked.  He asked me how I knew.  I just knew.  That’s what faith is.  When you pray for it you just know it will happen simply because you asked for it.

So using that story, why can I not get my faith in order when it comes to my hearing?  I’ve prayed about my hearing and health many times; for me to be able to keep what remaining hearing I have.  But I can’t get my faith into it.  This is something I will have to work on for 2009.  I know that once I pray for this and truely mean it and not doubt it at all, then it will happen for me.  A lot of people don’t believe this, but I could even get my sight back this way.  It’s all part of faith, I just have to get myself to believe it could and would happen to me.

Another thing is Isaiah.  He is truely God’s blessing.  I had the easiest pregnancy and didn’t gain any extra weight except the baby.  I knew whenever I was pregnant that he would not have NF2.  How did I know?  Just one of those things you know without knowing how you know.  Actually I did know.  Like I said previously, he is God’s blessing.  I was given a healthy, amazingly behaved baby.  God’s blessing has no defects and I know this.

I had him tested anyway.  To proove to everyone that I’ve been telling, “No, he doesn’t have it.  I just know deep down he is clean.” 

They all tell me that I have no proof and I can’t just go on a hunch.  That made me start doubting my faith.  “what if he does have it and I look like a fool for feeling so strongly a bout him not having it?”

Then I saw this verse in the bible.  “Faith is being sure of what we hope for and certain of what we do not see.”
Hebrews 11:1

That brought it all home.  Where is my faith?  I can not have doubts no matter how many people try to put them in my head. 

Isaiah’s blood was drawn to be tested for NF2.  They are going to try to get my results from Little Rock.  I told them they probably wouldn’t get them from there.  They told me there are only a few labs in the country that test for NF, so they will call them all to see if any of them have my results.  If that all fails, they took my blood too and will retest if they have to but that will take longer.  Once they find my gene, they can look for it in Isaiah. 

But I am certain, there will be no defect for him.  He is free from NF2 and I don’t need proof to tell you this.  I prayed for a baby that did not have NF2.  I was blessed.  I got my baby, so that means I got my baby without NF2.

We all need a little faith and not let the world put doubts in our believing.  Try and remember that.

I hope you all had a great Christmas.  I was going to write yesterday, but my mom’s internet was down. 

Today was a long day.  We drove back to North Carolina and for some reason, it seemed like it took forever.  I’m just glad the trip is over but I feel for my parents.  They are making the trip again to go back.

I was going to change my theme because I was told that this theme is kind of dull and boring.  But the FTP is not letting me in and my web hoster has been not available for it seems like forever.  Hopefully I get it fixed soon though.  It’s very frustrating not being able to do what I want.  I don’t know if it’s possible to change the theme like upload a new theme without using the FTP but if there is, I don’t know how.

Isaiah had a great Christmas.  Time like this I wish I could see so I could take pictures and put them up here for all to see.  My mom took pictures and but I don’t know what any of them are to upload some.  Maybe I can get someone to describe some pictures to me sometime so I can share them with you all.  Or I could try to take a picture with my phone, but probably wouldn’t be all that great.  I better let someone else do that.

Edward got me a pretty necklace and ear rings for Christmas, and some kitchen stuff.  It was a good Christmas for all.

I did get sad news though.  When I got home I had two emails letting me know that people had passed away.  One lady I knew with NF2 passed away a couple of days ago and another man with NF2 passed away today after a hard battle with complications after a spinal surgery.  I hope they both rest in peace and I am praying for their friends and family and for their souls.

Guess it’s time for my Christmas decorations and music to go back in a box now.  Until next year…  Merry Christmas!

Well, I didn’t end up making anything yesterday.  I still need to make some peanut butter fudge for my brother before I leave . 

Yesterday I had a killer headache and was feeling sick with that stomach thing again.  Today I am feeling a little better, but my headache is still there a bit. 

It is very cold here and right now it is freezing rain.  I was going to try to see my Grandma while I was here this time, but I don’t know if I’ll be able to.  She lives out inthe sticks and hills, and if the weather gets much worse then she won’t be able to get out or me go out there.  Hopefully the weather clears up, orat at least the roads are clear enough for me to go see her.

My niece and nephew came over Sunday.  They drove up from Dallas.  My niece is so beautiful and so talented.  She played a song for me and I ask her who did it and she told me that was her song that she wrote.  I’m very proud of her and one day she can make it big.  She just has to get her foot in the door somehow. 

Tomorrow I’ll probably do some last minute Christmas shopping.  I’ll write moer when I get a chance.

I just can’t get over how happy I am here at home.  Yes, I live in Asheville now, and you would think that would be my home, but this will always be.  I’ve always got a house to come to right here.

Today I had a blast just laughing and talking with my brother, dad, mom, Edward, and little kids.  Sure my hearing sucks, and its a bit frustrating, but I have a happier feeling being here around my family and I know they are willing to repeat a lot even if it is frustrating them too.

My mom took Isaiah to a Christmas play tonight.  You know Grandma, has to show her little boy off.  That’s a grandma’s job though.  She’s proud of him and should be; He’s a great baby! 

I made somedelicious pumpkin bread today and then some chilli for my dad and Edward.  Tomorrow I might make some peanut butter fudge, although mom is kind of wantingme to make my famous cookies.  So, we’ll see what I end up making tomorrow.  And I’m sure I’ll be back in here to tell you all about it.  Until next time…

It sure does feel great to be back in Piggott.  I love this little town.  Don’t get me wrong, Asheville is great, but this is the place I grew up and am very familiar with. 

My dad and brother drove up to Asheville to get my little family on Friday.  We all drove back to Arkansas yesterday.  I came down for Christmas, so will be here for a week.  I’ll try to write whenever I can. 

So happy to see my family again. I got to see my brother who is doing great, and his wife and kids.  My nephew Aaron has changed so much in just six months.  When we left he wasn’t really talking and now he will repeat everything you say, even if it is silly.

It’s just so great to be back in the house I grew up in.  I love it here.  Edward might have to drag me by my ears back to Asheville.

Yippy!  We’re back up and running.  Sorry folks, server difficulties.  But I was able to import all of the posts from blogger to here.  So We are completely moved over now.

I’ll write more of an update later tonight when I get a chance and let you all know what is going on in my life and how Isaiah’s genetic appointment went. 

Holly