Dealing

Sometimes when dealing with stuff we tune ourselves out of the world. We forget that part of life is living it. We stay holed up in ourselves and never bother thinking about anything but what we feel. I am having a very hard time dealing with the fact that my daughter has been diagnosed with Lupus. I had no idea when it was diagnosed what a big deal it was. But the facts are that Lupus kills. It destroys the body and there is no cure. It can be maintained and flares can be infrequent... unfortunate it is not even predictable. You can not say, oh yours is not that serious, because this or that is not involved. The truth of the matter is that in three hours time that could be involved, and if not caught in time you can be dead in a week, or a day, or a month... I mean how do you keep something from attacking you when it is you that is attacking you?

The nicest way of explaining Lupus is that a person develops an allergy, unfortunately the are now allergic to themselves... seriously... compare it to going into aniphylactic  shock cause you smelled your toe...

How am I going to deal with the fact that my baby girl can go off to school in the morning and be in ICU that night everyday of my life? It is not going to be easy... every day will be day by day. Yes I still have my daughter and so many people don't have their child, and I can not make her live in a glass bubble and I have to make her life as normal as possible, and I am trying.

I don't know how we are going to pay for all the crap we have to pay for Dr.s, medicines, hospitals... and what about when she is older and not on our insurance, how will she be able to afford what she needs... what about work and education, can I really send her off to some school, and not know see if she is running a fever at night, or if she has taken her meds... I really could use the winning Lotto ticket right now...guess I should play...
guess I will post my jumbled thoughts now...