Back in the hospital again

My body is just kind of collapsing with problems. Too much stress lately. Not necessarily bad stress, but stress.

Nothing like a good romp in the hospital to put life back into focus very quickly. I think if anyone complains to me anytime soon about their job, or whatever whatever whatever, I’m just going to slap them across the face and remind them if they want a taste of some real problems, go hang out in the Cedars ER.

Most people have no idea what it’s like to be chronically ill. I’m not talking about the odd embarrassing STD or the bad case of strep throat,

I’m talking about the wear and tear being chronically ill takes on your soul–the strain of living *constantly* in varying degrees of state of ill.

It is,

1) isolating. Who wants to be friends with you.

2) painful. Both emotionally and physically. I’m not talking about achy pain (that’s a good day), I’m talking about bouts of screaming on your hands and knees pain. But you can’t, because then people think you’re crazy. But if you don’t, then ‘how sick are you?’ There is no way to win.

3) expensive. Fuck Obamacare. It is so cripplingly expensive to live with a chronic illness (hospital parking is not cheap), plus the wear and tear just eats away at your soul. The guilt over how much others have to do for you. You think you can work? Then you’re not the kinda ill I’m talking about it. I’m talking about the kind of ill that makes you completely dependent on others for assistance around you. But unlike childhood, there is no growing up from this scenario. There is no end.

So why hang on? Why keep going?

1) I have a son. His name ironically means ‘preserver of life’. I don’t even know that when he was named it.

2) I still hold the belief that they will get the answer. Someday. That maybe I’ll be able to return to a productive life.

Some people base their self esteem around their children or their spouses, for me it was always what I accomplished. I liked being good at what I did.

As physically painful it is to keep going, it’s humbling to still be alive. I’m only here (mostly by the extraordinary generosity of one person) who has kept me alive. But it’s scary too. Really scary.

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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