David understands how sick I am

I’m in the midst of another horrible health crisis, and every time I’m in a crisis like this, it always brings back memories of other rough patches over the years…

So I starting thinking about all of the people in my life too, and how they respond when I’m this ill. Most people don’t believe it, frankly even doctors (because I always look so healthy), even some of the doctors who help me—some doctors help me, not because they actually believe I’m as sick as I say I am,

but they help me because they can’t completely rule out that I’m not. (‘Well maybe, just maybe, she is as sick as she says she is, and since the consequence of that claimed that level of sickness without medical action is death, so I’ll give her the 1 percent chance she might be right and order it for her….”

But believe me, deep in their soul?

At first I thought of Joe…he’s the only person in my life who truly believes me…not because he understands a lot about medicine, but because Joe understands a lot about people–he knew–he saw for himself–how badly I wanted my successful Hollywood career–how much I wanted it–not only just for my own selfish reasons, but because I was that fucking talented too. I was almost there…it was mine for the taking..

The only thing–the only thing–that could ever have held that ambitious and hopelessly niave gifted young lady back from Hollywood stardum,

was being so sick that I was going **to die** without help.

That is it.

Then just as I was having that thought, David came out into the living room where I sleep, looking scared and worried, and crawled into the chair next to me.. curling up so he could sleep near me.

I knew why he was doing that…he had heard talk with my nurse friend…David heard me say I waited too long to get back on IV antibiotics, that my blood pressure was down to 88/50 before I started back up on the Vanco, that I was currently having serious problems with my port,

David heard me say all of that.

And he didn’t say a word,

but I said,

“I know you heard me talk, and yes, Mommy is sick right now, but you also know Mommy is a fighter and I will persevere.”

At least I hope so….at least I’m trying….

David didn’t acknowledge my words, he just curled up into a fetal position on the chair. I think he was simultaneously impressed that I knew exactly why he came into the room, but he was also just upset and scared in general…he wasn’t in the mood to talk.

And I am trying. I am fighting. I will always do my best to stay on the planet, as long as I can, whatever I can, because I want to make sure David is going to be okay–

David’s father is pretty much useless, in terms of following up on our genetic disorder. He’s buried underneath his own life’s problems. He doesn’t want to deal with it.

David is going to need help the rest of his life, and I’m hoping to put a stop to that and solve this for him, so he can live out his talents and dreams, like a soaring angel–

That is my dream for David. To have a good life, a long life, with as little pain and misery as possible–

And I’m hoping to live long to make sure he’d on a good life boat. ..

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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