[Heather8773]

I wanted to say that I know there is a huge difference between being a care taker and a patient. and I have realized that sometimes my husband just needs me to be his wife and not his (constant...overbearing...incessant) caregiver.

A blog called "Just us. Musings of a childless scrapbooker with PNH" jackiep1102.wordpress.com has been very helpful. She talked about watching the movie 50/50 (amongst other things). I have to say it was more appreciated after my husbands dx for both of us. It made us laugh more this time.

My husband has been very sweet to let me type his words, or be his voice and constantly sign us up for groups, web sites and, meetings. If anyone wants to connect we are happy to share experiences. PNH, Eculizumab, overbearing care taker, ect..

Its a "funny" thing to look at your life, the complaints and, frustrations you had before a Dr gives you news that changes your life forever. A funny thing and a blessing of perspective. I think this is true for patient and the person who loves them incredibly.