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How do I move on..


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I lost my sister to PNH.  My sister was diagnosed with PNH in October, 2008.  When she found this out, she was in need of a treatment call Soliris, which she has a problem getting due to GHI (I HATE THEM) her insurance company.  They kept insisting her condition was pre-existing and kept denying her.  My sister was in and out of the hospital for 7 months.  I took action into my own hand & dealt with the insurance company myself.  She was clotting, low platelets (her platelets will NOT go up), & needed blood transfusions every so often.  She was FINALLY APPROVED for Soliris in June.  We then found out she need her ovarie removed, she had bleeding in her head and from then on she wasn't doing too well.  At this point the treatment wasn't working.  On Tuesday, May 12, 2009 she went to the hospital with abdominal pain and never came home.  My sis passed away on June 15 (tears).  I wish this was a bad dream.  I cannot focus.  I lost my mom in 95, lost my dad in 99 AND now my sister.  How do I learn to move on?  People tell me it's going to be alright, no it's not!  It just gets harder. 


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I know exactly how you feel, because my mom's insurance company she died also.  It was a little over two years ago and i am still in very much pain. The people who love me support me in my grief and care for me by being kind and loving to me. You need that to pull thru this. If you find people who don't support your grief or show you kindness at this time, leave them behind. Find those who will, they are out there.

Peace, Angel.

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Dear Members,

We are excited to mention that we are moving to a more new and improved message boards on MONDAY MORNING AUGUST 9th! The boards will be done for a few hours while we are making the conversation. Remember we posted information about this move a month ago. For some of you this might seem a bit sudden,  but when we were reviewing the site we determined the current message board you are using is out of date and the company that designed it is no longer in existence. The good news is this new message board will have new features that have been requested in the past like more fields we can add to your profiles and a chat room up to 20 people at one time. If we find the chat room is bursting at the seams we will add additional room for extra people. All your old posts, private messages and such will be migrated to the new message board. You might have to put up your profile picture again but not sure. The new company will be doing the migration for us. Here is a short list of some of the new features on the board:

- Custom Profile Fields

- Users can customize their profile pages by selecting a background color or background image, with tiling options.

- Facebook and Twitter Integration

- users can respond to multiple posts at once with "mini-quote"

- Pinned discussion threads - like welcome to our board etc.

- Announcements made across some boards or the entire message board

- Search: Users can easily find all content generated by a particular member, by clicking the 'Find Content' button that appears on the main profile page, or in the Mini Profile Popup which can be accessed throughout the board. The results page allows content to be filtered by application, as well whether the member created it or merely participated in it.

- Privacy: allows users to sign in anonymously, hiding them from the online users list. Users also have the option to disable personal conversations and user-to-user emails, as well as ignore other users if necessary.

The next exciting piece of news about the new message board is it will have a new domain name of www.grieving.com for search engine optimization purposes. It will still be apart of Beyond Indigo and can be found through www.beyondindigo.com. We will be redirecting your current URL's to this new domain name but we might miss a few. If that is the case simply go back to www.grieving.com or www.beyondindigo.com to find your message board thread. We will try to make the transition as seamless as possible.

The bottom line is the new board will give us room to grow our community and more options to interact better with each other.

If you have any questions please direct them to feedback@beyondindigo.com.

Kelly Baltzell, MA


Beyond Indigo Family

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