Better Late Than Never

[BlancheNoE]

Vlogging My experience with Polycystic Liver Disease in the hope that others with the disease might be better prepared for the ups and (mostly) downs in dealing with it.

I don't pull punches. This is how it is.

Much love to my cherished friends, my true family.

 

 

[NatureJunkie]

I am so, so sorry, Amy, that I didn't know when you were in the darkest of your depression.

 

When I was in the 7th grade, I sorta fell in love with my English teacher. Then we moved and I had to change schools. The following year, she told me much much later, she developed a tumor around her heart. Although I was in love with her, she was in love with Joan Baez, and she played her records over and over again all day long. She said she would breathe in pain. Listen to Joan's pure voice. Breathe out relief. She said surgery cured her, but it was the music that made her well. She's still alive today.

 

When I come out in December, I will restring my niece's guitar (restringing--I chore I hate more than picking up dog shit, so recognize this for the act of love that it is) and when I come to see you again, we will play together. I don't sing, never had a voice to lose. But I'm sure that you can get yours back again. Til then, just play the notes.

[NatureJunkie]

P.S. We won't be playing Bron-Yr-Aur. I gave up on constantly changing back and forth between tunings while learning that song. Plus no one's impressed with middle-aged ladies who play Jimmy Page. So it's one of my goals for 2011 that won't get scratched off my list. So sue me.

[BlancheNoE]

Hi sweet NJ.

Please don't be sorry. You didn't know because I was hiding. I've had a couple of bouts with it before, the longest of which lasted a year and a half after my brother was murdered and I just don't talk to anyone but a counselor when it happens because I discovered early on that talking to friends and family can actually make it worse because then I feel like I've burdened them which makes me even more depressed.

You can tell me it would not burden you until you're blue in the face and I *know* this but my innards refuse to believe it for some reason. 

 I haven't played guitar for 2 years because I have to hunch over to do it and it's uncomfortable so I'm going to be really rusty but we will definitely do it in short sessions.

 I had a crush on my English teacher too !!! ...though I wasn't in love with her. Yeah, I said it. I've had/have girl crushes. I won't name the ones I've had on-line *wink* but here's a few of the others : My second grade home room teacher, Miss Kirk, my 7th grade english teacher, Mrs. Hageman, Milla Jovovich, Michelle Rodriguez ,Sigourney Weaver and Angelina Jolie (until she declared "Atlas Shrugged" the greatest book of all time,though my affections for her greatly waned before that with her weird behavior when she was married to Billy Bob)  among others...not necessarily in that order.

 

[ThatGirl]

Oh, Amy you are so strong. You are my hero and you should realize you are your own. Words are weak but the pain and frustration of "losing" that you have must be just devastating, the depression is to be expected, and you're fighting like a warrior. I know...you are getting through it the best ways you can find. You're doing everything you can to get through this time, and I'm always hoping for your better tomorrows, for this time spent to be well worth the struggle. I got this really strong feeling for your recovery and that would mean your voice and your music..all of it. I'm so sorry about the depression, being as self aware as you are, identifying it and coping as you do, is beyond Heroic and admirable...again, these words are just "lame" substitutes for a bottle of SUPERHEROPOWERs...that I'd hand over to you without blinking.

SUBJECT CHANGER for grins: ooo...girl crushes? I like girls. We've Got two of the same ones...Angie is my number one, Milla number two. How about the 4 of us make a pron film? I'd add Shirley Manson, Fiona Apple, Gwen Stefani, maybe Regina Spektor.  If I'm going there, I'm going hot AND talented...Okay back to studying...as if....

[Marie]

Amy... I so very much, wish the best for you...!

[Marie]

Life is what happens between photographs and videos... It takes great courage to share that with others. Thank you.

[JustAnotherUserName]

Oh Amy...as usual, I wish I had something meaningful and profound to say.  You know that if there were anything any of us could do, we would.  I love you and your spirit and one thing I do know for certain is that there are life lessons to be learned from all of this...just keep yourself open to them.  That, itself, is a hard lesson, but the only one that kept me moving forward in those dark days of my son's illness.  

 

I'm jealous that NJ is coming to visit you first!

 

xo

Ruth

[BlancheNoE]

@ TG - Thank you your loveliness and I hope the kids (kid-knees) are leaving you alone. I struggled over vlogging it because I don't want to scare anybody. 98% of the people that carry the gene never have the liver explode like mine, but I wish I would have gotten some straight answers earlier on because I think I could have learned to cope faster if I knew what was coming. I really do. I want my truth like I drink (drank) my whisky. Straight, no chaser.

@ Marie- I know you do, Marie and yeah. Like John Lennon said : Life is what happens while you're making other plans. That's the hardest part of all of this for me. John and I had big plans,....but I know we'll end up doing something even better. Much love to you.

@ Ruth- I love you, Dear. There's always room for one more but I totally understand financial restraints. I miss your dating videos *smile* 

[Chig]

Okay, first off after reading this comment section in places I need to grab a cold shower.

Secondly, all those different Vanilla Cream sodas I have been collecting over the years are going flat, so I am having to drink them.  By the way... Thumbs up to the best one (Virgil cream soda).  Ask Pen if that one comes close to the one he remembers from childhood.    Third, I still have this rock to send you.   Remember you have to return it when you get it.  Forth, thumbs up on the Slipway.  Sleepwalker reminds me a bit of Alan Parsons circa the Pyramid era.  A lot of the other stuff reminds me of a modern sounding Mike Oldfield.  I have no idea how John did any of that.  Amazing.  Fifth, you have awesome bosses.  Sixth, so a sliver of liver is not an alternative?    Seventh, laying on emery foam toppers sounds "hardcore".  Then again so does a 30 lb liver baby.

Oh and that which does not kill us generally kicks our ass over and over again until we start kicking ass back  and then we get stinky foot on top of a swollen ass.   But the Aurora Borealis is really impressive today I hear.  So stop looking at the stinky foot and swollen ass and cast your eyes skyward.

 

[photo2010]

Dear Amy, Forgive me for being absent on here. I empathize with what you say about patience..and when patience runs thin, somehow we find more. Chronic pain=depression+crushing fatigue in my case. I am very interested in getting a foam topper for my bed. Can you give more details about yours?

Much love and gentle hugs Amy.