Alysia,
Thanks again for sharing your photos.
Both of you really shared some special moments.
Alysia,
Thanks again for sharing your photos.
Both of you really shared some special moments.
Alysia.
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXOOOOOOOO OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.
I love seeing photo's of Phil.
To be honest, I do love seeing the photo's of him and you in happier times when he wasn't in the hospital, but that's just me.......only because the hospital ones make me sad.
If they make me sad, then I can only imagine how they make you feel too..................and I hate knowing that you are so sad
At the same time, I miss seeing photo's of Phil, whether they are hospital ones or scenic ones. I actually can't get enough of them.
I really love those food ones.
He was a massive part of this forum and seeing him, makes everything feel okay
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
I like the 'pic from a sunny day' when the two of you went outside.
He looks happy there, in the sun...
Living with WG/GPA since june 2010...
I dont have enough words to express my gratitude to all of you, my beautiful friends, for your understanding and love and suport and kindness. it means so much to me.
it is also important to me to know that Phil is not forgotten. few friends on facebook unfriended him. I dare to ask one of them why, so she said that she miss him very much and it was too painful to her to see his face in the chat window every day. it also makes me cry. some people can just "unfriend" or "delete" him and not remember him. for me, there isnt single min in which he is not in my mind, heart and soul. day and night. I talk with him a lot in my heart. missing him so much. crying a lot. also smiling to myself when I remember something cute from him.
here is a picture from a tough day but he was THE BATMAN with all his being, as you can see:
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
I can see how "unfriending" could make you feel very sad. I am sure that those people do not mean to be harsh. They probably don't even wish to forget Phil...who would want to? Many people just find death too scary and too sad, and they deal with their sadness by trying to push it away. And for folks who have Wegeners themselves it comes even closer to home.
Every time I see a post either here or from Phil's FB account, I am startled, and momentarily sad. But then I focus on his smiling face, and think how glad I am to be reminded of him. He was always so very helpful to everyone. It would be lovely if some of his Weggie advice could be compiled and put together into posts based on subject matter. That way, his advice would come up when newcomers (or even long time members) search for a particular medicine, or symptom etc.
Don't worry about other people. You need to do what you need to do. Although we can't help but be sad to see pictures of Phil in the hospital...it is still inspiring to see his personality shining through it all! God bless both of you!
Jacquie (aka Lifelong Booknut)
Updated status: "Honorary Weggie"
Thank you Jacquie. I also though about a new thread: "Dr. Phil's wisdom" - to collect his good advices. but I don't have enough energy yet for it, and still I am coming here with too many tears to be able to read....
we can also learn what NOT from the way this horrible damn hospital treated him...
I also thought that all those balloon dilations that this damn hospital did to him, over a period of about 2 years or so, were a mistake. after each time he got severe lung infection which only made him worse and worse. they didn't gave him antibiotics before it. another mistake. at least this is my opinion.
if this input can help anyone around .....
Phil's parents and me still waiting for the answer of the hospital to our complaints about the maltreatment.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Phil's parents sent to me his computer. right now I am typing from it.
they couldn't handle it, it didn't work for them. I don't know why. so they sent it to me with sweet letter and a big picture of Phil and me. they are very kind and generous, just amazing. it feels warm in my heart to have Phil's computer here. it was our connector. and I have many memories of Phil working on it. of me charging it for him at the hospital.
surprisingly it works for me. even the charging cable was fit in the middle to my cable (because the electricity holes here are different).
I promised Phil in my heart not to read his mail (I think it is open because I have notifications in the main screen with a picture of envelop). he sure deserves his privacy.
I talk to him in my heart all day. ... since his computer is here it feels tiny bit like he is here.... I miss him so much...
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Yes, please keep us updated on the malpractice issue.
My mom got some kind of rotavirus or enterovirus from a colonoscopy.
This caused further stress on her kidneys due to dehydration even tho I brought her in for IV hydration.
However, the colonoscopy did find some surface blood vessels that needed cauterizing that were most likely a part of the cause of her anemia.
If they could only clean their equipment, these infections wouldn't be so common.
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