A Mini Update


A Mini Update

computer_key_Pause_BreakSleep... There is very little.

Me time... Is non-existent.

Marc... Is doing pretty great, considering.

All of my hours in my day are wrapped up into finding resources (which I know have a couple more options thanks to @Trish), administering medication, eight hours of IV therapy every single day, and cat naps because sleeping a full nights sleep is impossible.

I know how incredibly selfish it is to feel this way but I need a break. But then I think, that's not fair to Marc because he gets no break from what's going on. It's difficult, it's draining, but I am keeping my eye on the hopes of having a seizure-free, fully functional husband down the line. Everything seems to be going okay, if we can keep his kidney function in check.

Marc, however, has expressed how unhappy he is with the team of physicians at Stanford because of the mounting problems and issues we've encountered. Basically, major communication failures that have resulted in some costly issues and even some medication mishaps.

I have to say, I loved being at Mayo Clinic so much better. They understood our situation and they worked with us to make sure he got the care he needed when it was convenient for us.

He wants to go back and although I would love to go back, that makes my job increasingly harder. It was already a tough transition at a very critical time in his care to move here. I can't see moving back, just yet. I'm trying to keep him content here, at least until the IV therapy has ended. That's six weeks. Then, I'll entertain the idea of moving back. Until then, I've contacted his Mayo Clinic doctors for second opinions on his care. Maybe hearing what they have to say will ease the way for him while we're still here.

Who knows.

But trying to remain upbeat and positive right now is a strain on me. I don't really know how I feel but I know that I'm not happy right now. So, I am just keeping my head down and staying out of everyone's way until I can get back to feeling like me.

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I love the honesty in this, Casandra. It's absolutely understandable that you would want a break, that you would just like to have a \"normal\" day. I hope each day gets you closer to a healthy Marc and easier days. \r\n\r\nAlways so grateful you keep us posted.


(((Hugs))) I don't think it's selfish at all. You are trying to take care of yourself so that you can be on top of things for Marc. I think contacting Mayo for second opinions is a great move, not only for the information but for morale, given their care. I am sorry Stanford has -- to put it mildly -- been so problematic. I am keeping my fingers crossed that the situation improves, and I understand the need to keep one's head down in the meantime.