Friday, June 12, 2009

I've neglected my blog for awhile now. Jess being in the hospital for the second time since having her adrenals removed, just really threw me into a tailspin. Wonder if something like that is visible to the outside world? Seems to me I acted just like I always do, but felt like the world was spinning out of control with nothing or no one for me to grab onto.
I know this makes it sound like it's all about me, but it's not really. Cushing's and all the aftermath affects everyone in the family. I can really only tell it from my view point, which is not that great a lot of days.
There were days I was so afraid that this might be Jess' life from here on (but she said she wouldn't blame me until after I was dead!!LOL). That would make me so sad - and angry. It's now been a little over five weeks since her BLA. It was five weeks ago today that she started throwing up, and it still continues. Things are improving. I think she only threw up once today, very early this morning. It wasn't much. She seems to feel better, most of her lab work is starting to fall back into place. We'll check it again next week. Hopefully no more hospital stays. She is able to eat some, but not much at a time.
I expected that there could be some problems after a BLA but five weeks of vomiting was not on the list. For some reason I had always expected that it would be Justin that would have problems. In a way that would of been so much harder since he doesn't live with me any more. But I have figured out that I think he is listening to his body more closely than he used to. I think (hope) that he has figured out that having no adrenals puts his life on a little different level.
With Jess being sick I was starting to feel a lot like I did when I was first looking for answers for Justin, which was either three or four years ago. I lose track. I didn't realize that I was starting to forget exactly how desperate I was back then. I realized it had gotten a little easier over the years because I found direction and learned how to proceed through the medical community and found a support group. But I was back at square one again and feeling that same desperation. The biggest difference was that this time there were people to support me from the outset.
My theory (at the moment) is that she did have a mild case of pancreatitis that is now correcting itself. We'll see. If her numbers improve more next week (and she does too) I will know that I'm right. Maybe not proven, but settled in my mind.
What has surprised me is that this has all made me so angry, not at anything specific, just angry. I expect that will go away with time and as Jess improves.
People have been so kind, but the thing that always got to me was that they don't really know. They think they do, but they really don't understand how things just pile up on top of each other and everything affects something else in life. When things are going good (when?) that just means that things are better but when things are going wrong and it piles up - well it just turns into a mess.
I think I'm getting angry again.
Jess learned last night that in the time we have been gone from church (should be back this coming Sunday), Dr. Matchell's family has started attending. That will seem just a bit odd as the jury is still out on him. I can't remember how many times he has told me in the last three weeks that we need to find an endo. Oh really? Duh. But do you have any idea how hard that is? The very closest one is three hours away. He says this shouldn't be hard, this is what endos specialize in. Oh, yeah, I'd forgotten they know so much. I'm not sure he understands that a first appointment with an endo really is just to size them up and see if they have any idea how to manage the kids health. The first one I pick to go to may not turn out to be the right one. It's like each first appointment is really an audition. We just hope we get lucky the first time.


Robin said...

Hi, Judy. You have a right to be angry, and you have a right to question doctors. Dr. M does NOT understand, and I doubt anyone can totally understand unless they've walked your shoes. Sadly, I doubt Dr. M will ever even come close, though. He won't try to see how it is in your shoes. And he probably doesn't even realize he is so clueless.

The thing is (and I'm having a hard time getting my daughters to understand this, too), this affects your life financially, mentally, physically, emotionally, and more. It affects stress, bills, worry, mood, etc. You are as affected if not more so than Jess, Justin, and Bill. You worry about it all. You deal with it all, and you have to handle it all.

I hope your family, friends, doctors and church can understand your end of it all. I care.

judycolby said...

I know you understand, Robin. Thank you.
I don't even know how to try and describe how scary it is for the kids to be so fresh out of surgery and we're ready to set up Bill's. Him going to surgery scares me more than the kids, on so many levels.