tag:blogger.com,1999:blog-2962278861493656937.post2678495582512858721..comments2023-09-09T11:57:45.410-07:00Comments on The Fabulous Running Mommy: ExistenceOlivia Hernandezhttp://www.blogger.com/profile/12250016046902646771noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-2962278861493656937.post-24645515804286618692011-03-08T22:16:58.683-08:002011-03-08T22:16:58.683-08:00@Amy, your sister is so blessed to have you suppor...@Amy, your sister is so blessed to have you supporting her, she will never be alone as long as she has you. Are you guys going to start learning ASL? Where are you from? Feel free to email me at okamador@aol.comOlivia Hernandezhttps://www.blogger.com/profile/12250016046902646771noreply@blogger.comtag:blogger.com,1999:blog-2962278861493656937.post-89362961283103747892011-03-07T13:36:08.278-08:002011-03-07T13:36:08.278-08:00I ran across your blog via google search back in J...I ran across your blog via google search back in Jan on the night my sister was at House in LA getting her 2nd and 3rd NF2 tumor removed. It's been exactly 3 months since my 30 yr old sister's NF2 diagnosis. We didn't even know NF2 existed until then and it's something that has changed our lives (esp. my sister's) forever.<br /><br />Your blog is like a window into my sister's soul, helping me figure out what NF2 is and what's going on and the things that must be going through her mind that no one else but those walking in her shoes can even begin to understand. <br /><br />The hard part is watching people not know what to say or do w/her now that she is back home. They don't understand NF2 and they think bcs of this surgery, she'll be back to normal and life will go on like usual and she'll get her hearing back in a couple more months. I just want to scream, "Why can't you understand?! This is just the beginning for her!!" No one gets it! They found 4 more tumors incl one right on her facial nerve (which was hiding behind the 2 the drs just removed)...they left it in there to monitor for now. (My emotions are still so raw from all of this. I hurt so much for my sister and what NF2 has and is taking from her.)<br /><br />Anyway, you have helped me more than you know.<br /><br />~AmyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2962278861493656937.post-51969968684884731982010-12-06T19:47:07.174-08:002010-12-06T19:47:07.174-08:00I'm the first person in my family to have it, ...I'm the first person in my family to have it, so I haven't lost anyone. I can't imagine what that is like, but i'm so sorry for your loss. I don't understand why people distance themselves... fear I guess. Even my family is kind of weird and distant. I think they're in denial or something. I met a young woman at an NF function last October, who said her dad stopped talking to her after she was diagnosed, WTF? <br /><br />Venting is healthy! ; )Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2962278861493656937.post-62787311405839468152010-12-06T17:59:15.869-08:002010-12-06T17:59:15.869-08:00Olivia...i know there are no words that could make...Olivia...i know there are no words that could make you feel better. This disorder sucks and like you said, there is nothing we could do about it yet. My love goes through these emotions at times...and I tell him he does not always have to be a cheerleader...feel your emotions and dont be embarrassed by them; they will make you feel stronger later. I have seen some of his friends slowly disappear as well, and that hurts me. It bothers me to think how selfish one could be...always thinking me, me, me. But for every friend that has disappeared, many more have come our ways through NF2 (like yourself).<br />Big hugs girl!<br />Love Always,<br />ChristyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2962278861493656937.post-31151053922880359572010-12-06T16:27:02.991-08:002010-12-06T16:27:02.991-08:00Felicity, seems like we are in the same boat, don&...Felicity, seems like we are in the same boat, don't you wish you could jump off? LOL I watched my Mom's friends and family almost all distance themselves, even her closest friends were nowhere to be found in the end. I think the harsh fact is everyone dies alone, even when surrounded by family. <br /><br />I am already feeling a bit back to my normal chipper self after venting a bit here!Olivia Hernandezhttps://www.blogger.com/profile/12250016046902646771noreply@blogger.comtag:blogger.com,1999:blog-2962278861493656937.post-27250028374971314372010-12-06T16:17:09.431-08:002010-12-06T16:17:09.431-08:00I read your post in a reader, but now the text isn...I read your post in a reader, but now the text isn't showing up on your blog. <br /><br />I also have a huge tumor in the front center (3+cm) of my brain. The doctors told me it "could" cause seizures. So far it hasn't, but the "wait and see" approach is hard to deal with for sure. Always wondering where the next tumor will pop up and what part of your functioning you'll lose. A few weeks ago I lost use of my hand for about 48 hrs and i'm getting my C-spine MRI early to see if my tumor on C2 is the cause of that.<br /><br />The last sentence in the 3rd paragraph really hit home for me. My friends are all gone, except for 2. You totally hit the nail on the head about people wanting to distance themselves so they won't cry when you die. That's exactly how I interpreted their behavior. <br /><br />I try to be positive, but the truth is this disease is a monster and it sucks so bad!! Big hugs!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2962278861493656937.post-62566758934277793142010-12-06T15:07:27.991-08:002010-12-06T15:07:27.991-08:00I'm glad you shared your rant and thank you fo...I'm glad you shared your rant and thank you for being so raw and honest to us all. I truly believe in a way you are the lucky one. You have found what you are meant to do in life. Even though it sometimes feels in vain. You have found love and friendship that most people will never know. It will be hard (I use this word for lack of a stronger one) losing you, your light, your energy, but it won’t ever be gone. You have built a solid foundation of love around you and you will not go without a fight. All the work you do brings them closer to a cure. All the work you put into yourself extends your quality of life. <br /><br />You are an inspiration to me (and I'm sure many others)...<br /><br />~Amber PAmber Phttps://www.blogger.com/profile/10237398930974793893noreply@blogger.comtag:blogger.com,1999:blog-2962278861493656937.post-6432001482181807602010-12-06T11:21:25.707-08:002010-12-06T11:21:25.707-08:00HUGS GIRL!!!! I LOVE you and I hope for a cure as ...HUGS GIRL!!!! I LOVE you and I hope for a cure as well!! But those who love you will always be there for you! You will never be alone, especially we me around girl!! :o) Keep your head up!! No pity parties girl!! Just take it on day at a time and enjoy each and every moment as it comes!! LOVE YOU!!! :o*Sheilahttps://www.blogger.com/profile/10152243328495769883noreply@blogger.com