Learning to Live With It

[BlancheNoE]

<p><a href="http://vimeo.com/23350505">PCLD Files - 05/05/2011</a> from <a href="http://vimeo.com/user3268126">BlancheNoE</a> on <a href="http://vimeo.com">Vimeo</a>.</p>

[Chig]

You look good, despite your frustrating circumstances.   I read somewhere an article of a lady here in Tucson mentioning that  she was on the list 2 years (same disease as you) before getting the transplant.   She is educating just as you are, and YES in the end she feels very blessed.   I hope you managed to get to where she is at now  much sooner than she did.   Eyes on the prize.

[BlancheNoE]

@ Chig- You need to check your eyeglass prescription. Can you please find me that story ? I'd very much like to try to contact her.

[Victoria]

It does you no good to hear how angry this makes me....as I refrain from typing expletives at the frustration over the politics of "practicing" medicine.  something .... but what .... must be done.  you should NOT have to live like this.  can you find a new doctor who has the balls to score you higher on the list !??  OK, I'm not going to get angry (repeating).  

can I help you?  Amy, if you need to travel to see a specialist....that can happen.  as for your GP, shame on him.

[SydTheSkeptic]

Stoicism doesn't help. 

Outrage and sheer frustration are wholly appropriate in the context of what you're having to live with, Amy. 

 

I have a question, though.  If you can't do the things you normally love to do (sing, hike, vlog, yoga, badass greenscreen stunts, shooting up multiple LtAdams', etc.), have you been able to explore other things that would, for the time being, sustain you emotionally and/or spiritually? 

 

I notice quilting is something I hadn't seen you do before.  I'm sure it's not nearly as satisfying as something that makes ya sweat and your heart race, but is it a new love? 

 

I have a friend who suffered a severe injury a few years ago and now she has to walk with a cane.   This was a woman whose identity was grounded in her physicality because she was an athlete up to that point.  She's like a different person now because she had to find different ways of being in the world. 

 

She went through all the stages of grief around having lost her old self, and she was- at times, stoic, and then other times, not so much.  It just depended on where she was at on any given day. 

 

Anyway, not to sugar coat anything- she's still very much missing her old life, but she's said she had to be very mindful and deliberate about leaning into a new way of being in the world.  I won't go into it too much cuz I don't want you to misunderstand this as being like someone saying, "hey buck up, it'll get better!" 

 

It seems as though that's where you're at, though- like you're beginning to lean into it. 

[BlancheNoE]

@ Syd - Yup. You nailed it. I am in fact trying to re-learn " being in the world ". The quilt is my only project right now. It's a struggle just to work on it sometimes which is why it's taking so long but I do look forward to each stage of it. I haven't found a new way of singing yet but I haven't giving up on it. One thing I'm most worried  about is re-gaining my individual "funny". I can laugh at other's stuff and I'm still occasionally inspired to leave the humorous comment but I'm just not creating any 'funny' of my own and I miss it, not to mention I am going to NEED a sense of humor when the first person asks when I'm due ( I'm starting to look pregnant ). I'm just not there yet. I also wanted to slap my sister when she said  " Oh, it sounds just like pregnancy! ", no, number one the human female body was not made to carry a baby in the rib cage where vital organs are, number two, there is no nine month time-frame and number three, there is nothing beautiful coming out after said set time-frame, and as a runner-up, I've BEEN pregnant and THIS hurts a HELL of a lot more than pregnancy. I seriously wanted to slap her and I HATE feeling that way. Like I said,...I need my sense of humor now more than I ever have. It's trickling back but not fast enough.

And yeah,  that's where I'm at for sure.

Thanks Syd.

Love you.