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>

[Marie]

It is possible to bitch while maintaining grace and dignity (which you have in abundance). Sometimes bitching is needed to protect one's grace and dignity when it comes to things medical. In fact it's not bitching at all, but standing up for oneself and ensuring you get the care you need/deserve. ;-)

[BlancheNoE]

Thanks Marie, but my husband might beg to differ on the dignity and grace part.

[photo2010]

Blanche, I can only say that I understand "learning to live with it", and it sux. I was told over 10 years ago that stem cell research was my best hope. I honestly don't think I'll live to see that breakthrough. I still hope and pray for you. xo

[BlancheNoE]

Thank you, Kevin. I know you know. It's clear to me now that I must be completely incapacitated to warrant transplant. I at least know there is a fix for me. I know it is my life's mission in this incarnation to learn patience. I'm having a very hard time with knowing there is a "cure" for me and I can't have it now when I'm already feeling so sick that I can't imagine going on feeling even sicker, but I must. I hope and pray for a breakthrough for you. One of my top 3 reasons for being utterly disgusted with George W was his decision to put the kabosh on stem cell research....stupid, ignorant f%ck...sorry, can't help it...he is. We would have been so much further along if not for his interference.

xo to you

[NatureJunkie]

Amy, at least two or three of the medical journal papers I sent you argue that improved quality of life is an outcome of transplant surgery and is therefore adequate justification for transplants for people with PLD. Since you will have to keep advocating for yourself, I hope that will be useful to you. I'll send you a CD containing all the worthwhile papers I found while doing research for you.

[BlancheNoE]

@ NJ - I love you. I'm so grateful for all you've done. The thing is, they won't even look at any of that anymore. They seem insulted when I try to get them to read anything. One of the doctors even said " Oh, I've read that .", before I even pulled the report out of the manilla folder.

I'm not giving up, I just can't ride the roller coaster anymore. It's not fair but it is what it is. I must have been a real asshole in my last life. My catch 22 now is that if I follow all the rules so that I'm healthy enough to keep working, I stay further down the list. If I don't follow all the rules and succumb to the ravages of the disease faster, I lose my job and insurance which means I wouldn't be eligible for medicaid for 2 years,....meaning : I'm Fucked.  It appears that any which way I look at it, I will be forced to lose most everything before I can get a chance at regaining life. Again, I'm not giving up but I have to concentrate my energies right now on just making it through each day.

To anyone else who might be reading this, enjoy your health and guard it with,..well, your life.

[JustAnotherUserName]

Yep...good ole USA.  Best healthcare system in the world, right?!  Wrong.

 

Amy, there's nothing I can say.  Nothing.  I love you and can at least relate to the "just getting through the day" mode.  Have you investigated the German healthcare system as it relates to your condition?  At least it won't bankrupt you if there are any options there at all.

 

As always, much much love and positive energy coming your way from Topanga <3

 

Ruth

[Mel Meeperson]

We're here thinking of you.

[Pypermarru1]

Always hoping for the best for you, my friend.

[BlancheNoE]

@ Melpers- Thank you. Thinkin' 'bout YOU guys *smile*.

@ Pyper - Thank you much, friend. I'll be fine. I can be such a wuss sometimes.