Comments on: It Ain’t So Bad

By: hollyalonzo

hollyalonzo — Mon, 30 Aug 2010 15:23:46 +0000

Hi Jeremiah,

The establishments I have been to have not been good. I don’t think I would have had such a hard time if I had been in the hands of good, knowledgebeble doctors about NF2. The last two surgeries I had–one in North Carolina and the other in Los Angeles–Were with execellent surgions. Those are the only two surgeries I’ve really been in good hands. Because of these execellent surgeons, I now have my smiles left. The right side is a bit wea, but not noticable to others. The left side is perfect and it amazes me because the tumor was5CM. We all need these top doctors who KNOW what they are doing with NF2.

By: jeremiah sisovsky

jeremiah sisovsky — Sun, 29 Aug 2010 01:46:25 +0000

I might have posted this on Yvonne’s blog quite a while ago. I posted something here a while back but not sure why it’s no longer showing.

It seems like you have a nice-sized fan base to assure many views, thus reaching the most people without skimming email addresses (I already bothered Yvonne and didn’t want to make it a habit).
So now, my comment. Oh, it’s just interesting reading the stories of people, particularly those who have experienced nf2. I am glad for you, and at the same time, amazed, with the support you (in the plural sense of the word) have garnered after diagnosis. Would you say the medical establishments you have visited helped in the regard? Having started college, going from hearing to total deafness, and receiving care from local neurosurgeons (who did not have much experience with nf2, plus albeit being a little cautious about HIPAA requirements) when the gauntlet dropped, I guess there was a sort of isolation. Perhaps more importantly was a mildly asocial-ness.
Anyway, the point being it’s engaging to read how others in similar circumstances cope and conquer. It just took me 15 years to seek this out LOL.

By: Yvonne Foong

Yvonne Foong — Fri, 12 Mar 2010 02:23:38 +0000

When you wrote about the smell, I was reminded of a dog. Just kidding! But I will be sure to scrub myself well before we meet lest you know that I have not been as hygenic as I am supposed to be.

By: Jamie

Jamie — Thu, 11 Mar 2010 03:54:34 +0000

Way to explore and embrace your present state of being, Holly! I knew you would adapt, but I had no idea you would process the experience so quickly. Way to be true to your experiences and forge ahead. You are gonna have quite an adventure with your ABI! I’m so happy other issues resolved thanks to surgery too. Your life force is strong! Love and hugs, Jamie P.

By: hollyalonzo

hollyalonzo — Wed, 10 Mar 2010 16:58:23 +0000

Thanks Sarah! You know, I was told I was “whining.” All I was doing was stating the facts to show the seriousness of the issue. But, I was on a fast downhill spiral. I sort of hit the bottom. Now, there is nothing up looking up for me to do. There’s nowhere left to fall when you reach the bottom.

The tumor was causing major issues, even ones that the medical world doesn’t see how it was possible. I’ll blog about two issues that maraculously are resolved after 2 or 3 years.

The DBC is amazing! I’ve talkede to people I haven’t really talked to in years! I am included in whatever it is. I took Isaiah to my cousin’s to ride horses! He had a great time and so did I talking to my aunt and uncle and cousin with the DBC. I’ll post pics of Zay on t he horse as soon as I can get it from mom’s camera!

2 more weeks!!!! I am so excited for the ABI to be turned on! I know it will work g reat! I am just determined enough to make it work! Hugs.

By: Sarah Gorden

Sarah Gorden — Wed, 10 Mar 2010 07:08:12 +0000

Holly girl you are amazing! Your positive attitude through all you have been through is admirable. It was neat to read the ways in which you’ve adapted. I’m so glad you got the deaf-blind communicator to help you too. I bet you are getting anxious to go back to LA for the ABI activation. Talk to you soon, hugs.