Frustration has been a big part of my life the past 2 years with Liz's health and her constant struggle to remain alive. Its hard going to countless medical appointments, ER visits, ICU stays and visits to other states for medical advice and all that they can say is there is nothing they can do, or all her tests came back fine, there is nothing else wrong except her HAE. And the frustration is never about Liz. I am frustrated that she can't get the help she needs and deserves except the few treatments she gets here and there. It is honestly feeling like they are at an ending point for how they want to treat her, the costs are outweighing the gains for them. Sometimes i swear they just do things to appease us and to make themselves feel like they are doing something.
I feel for her. I feel for Peanut. Liz feels that she can't be the mom she wants to be and that is true. She can't do what the normal moms do. But she does not need to. She is teaching Peanut something much more valuable and that is how to live with a shitty disease. How to face hardships head on and how to do the best you can day by day. Peanut has learned compassion from Liz and I. She has seen me help her mom shower, get dressed, and go places. Peanut constantly says she wants to be a nurse when she gets older and that also is from seeing the ER Nurses and how great they treat Liz and how they have interacted with Peanut while in the ER. They love her. Peanut wants to go to the ER just to visit her friends.
As a family we have learned compassion, love and giving through our Frustrations.
It is hard for me overcoming my frustration. I know that most Doctors do not know about her disease and have and will probably not see another case of hers at all the rest of their careers, but i just wish they would listen to us and research on their own. Some have. And they are great. Some just don't listen or care and just assume what they know is right. It took almost a year to get one Doctor to dissociate regular Angioedema with HAE. Whenever he said Angioedema i would say Hereditary Angioedema right after and he would look at me like why are you correcting me. And i would have to remind him that it was not the same thing.
Frustration is part of our days. I hope and pray that I can not get as frustrated and that I will continue to have compassion for others and give as much as i can.
Quote of the Day:
" Take the high road. No matter how much strife,and consternation, frustration and anger you might be confronted with - don't go to that level "
- Tim Gunn -
Video of the Day:
Titanium - Boyce Avenue