Mom
If you go to the attached link, you’ll see that it couldn’t have been “the dad”…
[url]http://www.ninds.nih.gov/disorders/fabrys/fabrys.htm[/url]
Unfortunately, people will feel “responsible”, but there’s no guilt to accept or hand out. How can someone be “responsible” when they have absolutely NO idea they had it in the first place??? I, too, had these thoughts when I first read about it, because my daughter shares a lot of symptoms, but there’s NO WAY I could pass it along to my daughter…only my wife. And the chances of her having the gene, as well as I, are almost impossible.
So, I think someone was just trying to comfort your friend.
Elmo
Mom
Funny you mentioned your friend. My freinds thought I was dying during my acute phase and wouldn’t see me for a really long time. Maybe they just can’t deal with death or something. I didn’t know but everyone, it seemed was so afraid to visit me. I shut myself out and became really depressed. I am, for that matter, still depressed, because in a way, I have not excepted my life the way it is now, compared to the way it was.. I still want to be super mom, super everything… If you only knew how much energy I had. People couldn’t even figure out how I did what I did, but it was the running 7 miles/day and riding my bike. I can’t do that now. Not even close. I wish I could find some other way to vent. Maybe someday. I’ve tried almost everyting from yoga (CAN”T DO) to meditating, oh hell., I’ve tried it all. Maybe I’ll get a sign>>>LOL Good luck with your endeavours. xoxoxoxoxoxo Roxie
Mom
I know this is crazy bur hospic won’t come in until she is feeling pain or uncomfortable. Comfort measures only. As I said, she’ s blessed to have none, so the doc’s don’t see that as an option now. Kinda bitter sweet. I have to go away to pick up my son on Frid. and my sister is coming Saturday to stay with her , however, my mom she just started crying, sayin how much she’d miss me. It made me feel freal bad. I know iIcan do things my sisters can’t and likewise. They are so into trying to make her well, which will never happen, and she doesn’t want anyone to come into her house. I know I wouldn’t either if I were her. Only hopsice if she has to get that far. My sis wants to hire someone to help me but I said no. Mom doesn’t want that. She is happy if I can only stay there for an hour. Her happiness is all I want.I know I am there all the time, so they don’t quite understand everything. They mean well, but I I still don’t think they get it. It is terminal and she wants things her way and so do I. I know they love her but just let her be. She has excepted things and I believe she is at peace. Who knows, Maybe I’m wrong but I deal with dying people every day of the week. I know your prayers count and I thank each and every one of you. You have always been my second family. xoxoxoxoxoxoxoxo Roxie
Mom
Roxie,
I went through it when my husband was dying from lung cancer a long time ago. He was diagnosed as terminal in October and died in early January. I took care of him during the times he could be home. I remember thinking when I was near exaustion “God, I need help too” and that’s not being selfish. I wasn’t dealing with a syndrome then though. Lean on friends and family as much as you can so that you can get some rest. Mom’s LOVE us and your’s will understand that you have to leave her bedside to rest. Don’t feel guilty, her sickness might say “don’t leave me”, but a mom’s heart will understand you need to rest. Maybe if an extra bed could be brought in for you you could rest too. Do tell her nurses what you struggle with.
From my heart, close your eyes and feel the hug I send,
Mom
The doctors started the PP about 1/2 weeks after the IVG as no real improvement was seen. Yes she is trached. They intibated her after 2 days in the hospital and did the trach about a week ago. The feeding tube was removed from her nose and now is directly in her stomach and that was done 2 days ago. They are wanting to ween her off the trach and transfer her to an acute hospital to get her out of the hospitals ICU. I was upset about that until I heard that it was actually [B]in[/B] the sister hospital a little south of the hospital she’s at now (which is actually closer to my house, but a little farther for my dad).
If the treatments don’t make any improvement what can I expect at the worst, time wise I mean? It’s been real difficult as alot of our family is back in Chicago and its just me and my dad and he’s 72 but still works (but has taken time off now). My sister is coming in on Wed her second trip here and is going to stay as long as she can to help Dad & I out, I’m exhausted as I have done nothing but go to work and the go and releave my dad in the evening just to keep her company.
I did notice on this web site that there is going to be the 9th annual International Symposium in Novemeber right here in Phoenix. Will that be helpful for us or is that for doctors?
You guys are great! Any discussion or words of advise are helping!
Mindy
Valley of the Sun!!
P.S. Is there anyone else out there from Phoenix or Scottsdale?