Hi Everyone,
Gene seems to get weaker and weaker as the day progresses; I'm so frustrated that neither his doctor or the Complex Chronic Care nurse returned my calls.
This up and down Encephalopathy is driving me over the edge. From hour to hour I don't know how he is going to be. This evening it took him a half hour just to put his clothes back on after sleeping for five hours this afternoon.
This morning he was fairly with it; but by the end of the appointment he was slipping back into E.
What can I do? As soon as I post good news, he regresses.
I couldn't do it with out all my friends on the forum.
Barb
Barb -
Maybe you have to roll with it? Even though my Dad is feeling well it is like you described one day he is good the next I'm thinking I'll be living back with him before I know it?? When he was real sick it was like that too. It really sucks (pardon my french)
So I guess what I'm saying is don't have any expectations and know its going to be up and down - (easy to say hard to deal with when your the caretaker!!!)
I sure hope this is comming across the way I mean it -
Hang in there and don't forget to rest and eat.
Patty
Maybe you have to roll with it? Even though my Dad is feeling well it is like you described one day he is good the next I'm thinking I'll be living back with him before I know it?? When he was real sick it was like that too. It really sucks (pardon my french)
So I guess what I'm saying is don't have any expectations and know its going to be up and down - (easy to say hard to deal with when your the caretaker!!!)
I sure hope this is comming across the way I mean it -
Hang in there and don't forget to rest and eat.
Patty
Hi Barb,I am sorry to hear you & Gene are going thru this. Are you ok hon?I do hope things settle again very soon. My heart goes out to you sweetie.Please know I am here for you Barb.I know how hard it is to deal with this day in & day out never knowing what the next few hours may hold. You are not alone Barb. We are here for you. My thoughts & prayers are with both you & Gene. Love & Hugs. later....
Barb,
You are such a strong woman Barb. My heart goes out to you and I will pray for you and Gene.
trish
You are such a strong woman Barb. My heart goes out to you and I will pray for you and Gene.
trish
Hi Friends,
Gene is having one of his better days. We saw the doctor and repeated all the lab tests. Everything came back fine and the EKG was normal. We're still awaiting the iron reading which will determine which reading was incorrect.
I'm a wreck but pleased Gene is bouncing back again. What frustrates me is not knowing what is setting him off so we can't do anything to head off problems. As soon as I post he has a problem he rebounds; then when I post he's better another problem pops up. I need to learn to take everyday as it comes; good or bad.
Love you all,
Barb
Gene is having one of his better days. We saw the doctor and repeated all the lab tests. Everything came back fine and the EKG was normal. We're still awaiting the iron reading which will determine which reading was incorrect.
I'm a wreck but pleased Gene is bouncing back again. What frustrates me is not knowing what is setting him off so we can't do anything to head off problems. As soon as I post he has a problem he rebounds; then when I post he's better another problem pops up. I need to learn to take everyday as it comes; good or bad.
Love you all,
Barb
I hope Gene is better today Barb. Thinking of you.
Marg
Marg
Hi Barb I'm glad this is one of Genes better days. one day at a time sweetie. We are here for you. My thoughts & prayers are with you. Love & Hugs. later...
Barb, I understand your frustration. However, this disease is unpredictable. For example, I felt miserable on Sunday...liver pain, which I almost never have, some nausea when I even looked at food, just feeling ill in general. Yesterday was a little better, and today I feel almost "normal." There is no way to predict how I will feel tomorrow. Makes it hard to plan anything, that's for sure. Yes, if you know what causes problems, then you can address it and try to avoid it next time. It then seems that something else will pop up to cause problems.
It's true that the best we can do is take it one day at a time and go with the flow. And pray.
Connie
It's true that the best we can do is take it one day at a time and go with the flow. And pray.
Connie