My husband and I are in San Francisco, meeting with medical specialists on his behalf. We called the nurse coordinator to let her know about Zoralei being grumpy yesterday, simply because they had told us she was not exhibiting many pain symptoms and we know that when Zoralei acts like that, she is in a great deal of pain! It is not less by what I can tell, though they seem to be thinking so. Eric talked to the nurse and asked what we should do if a future occurrence happens. She recommended that we leave and just let the nurse know so that it can go into Zoralei's notes, making the other specialists aware. We also asked them to encourage her to choose water for drinks. She has access at the hospital to juice and soda, but with so much physical exertion, we are worried that they are not the right drink to have. She is pretty good at drinking enough water, but we don't do soda and juice at home and so would prefer good habits, not bad ones be established.
At about 6 pm, I called Zoralei to see how her day went. She said it was the worst yet. She struggled to beat her time in certain activities, redoing them over and over without luck. What made it even harder was the fact that the small break she receives was forfeited so she could keep trying to beat her previous time. Her exact words were that 'all she wanted to do was break down.' She said that I wanted to call you so many times, but I knew I wasn't supposed to. She was buoyed up with the thought that our family friend was coming to visit her. She got through with positive thoughts of the visit. I was so grateful that they said yes to let her visit.
One thing we have noticed is that when Zoralei is particularly hurting or wanting sympathy, she immediately heads for his dad. I am more apt to say that we were told we cannot discuss your pain with you and it will take him a while into the conversation before that occurs to him. It is interesting to watch the dynamics play out and to have to be cautious about all the interactions going on.
Zoralei told me she was sorry for being so out of sorts the night before, but she is worn out from the intense exercise and she does not want to talk about her feelings anymore. They are asking her about her feelings, telling her even that they (by they, I really just mean whichever specialist suggested it to her) think she has anxiety I do not believe my daughter has anxiety. She is a perfectionist though and does not really like to talk about her emotions because she prefers to be in controls and emotions can run away with a person. But the last word I would use on Zoralei is anxiety. I think though perhaps that because she is rather offended by the diagnosis that it might help her to seek to prove it wrong and to talk about her feelings more. I reminded her that we are simply there to help her and have no other intent. I know she understands intellectually, but sometimes emotionally, it is like she sees us as her enemy. As the nurse coordinator said, being cranky at their family is very common as they hold it together for so long. It is however, my least favorite part of dealing with it all.
It probably does not help that she is exhausted from her grueling workout and emotionally opening up and I am exhausted from taking care of two sick family members and the other 5 children. . It is a tiring ordeal.
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