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This entry is probably going to wind up being a cross between a rant, and stream of consciousness musing.

Life is something really special.

You make friends, do things, become things you never thought you could be. There are a lot of hardships that we all go through, and struggles we must endure. But many of us at least still have our health.

I on the other hand, am quite the opposite. I have good friends.  Really good ones that will let me bitch them out on bad days, even when they don't deserve it, and who I would do anything for. They should know how much they mean to me. I have amazing friends, and a crumbling family, but I also have zero health.

I take photos when I have the strength to now. Stock has been slowing down due to my ill health, and even two jobs isn't going to be enough to help me pay these new doctor's bills. I have very limited insurance, so I do what I can.

This year is going to be a hard one. I'm probably going to have to move again, AND fund a wedding AND manage to pay for my time being a lab monkey at Johns Hopkins. Hopkins has a fabulous reputation, and they've been trying to send me there for years. It turns out that even their sub SUB specialist does double duty for children and adults.

In other words, I have about the same kind of luck Lou Gherig did. The doctors don't have any idea what to do with me really. They aren't sure what I should be looking for, or what's next, because most people that have what I do (it's a common variable immuno deficiency. In common terms, I don't have an immune system. At all, really. For those of you that DO know what that is, my WBC ratio is around 550. That is very VERY bad.)don't make it far into adulthood. I can go from happy, dancing, singing and totally normal to on the floor with a 103 degree fever in under twenty minutes. To boot, I have allergies. I've spent a huge portion of my life in a hospital doing everything the doctor's thought might help. Truth is, there isn't much they can do but try to keep me from getting infected.

But, now I'm an adult. Doing my damndest to live a normal, functional life. Between this, and chronic depression, it's not easy to get around. (as an aside, maybe I can get the hospital to call it even for testing on me so I don't have to pay them insurmountable hospital fees >.<) I don't know what is going to happen tomorrow, symptomwise, and neither do the ominous They.

And yet, I'm here. Unable to afford the inevitable.

But for those of you who are like me, and in the same damn situation, and are unable to get the care you desperately need, there IS ALWAYS HOPE. By medical definition, I should not be able to live as long as I have. I've been very very lucky, but one day my luck WILL run out.

I've managed to baffle every doctor that has compared how I look and act vs my lab results. Something, (I don't know biologically or spiritually what it is), is watching out for me. The same force is going to take care of all of you too. Remember that you have it in you to take charge of your fate. In order to do that, you have to accept what will happen to you.

Don't forget to thank the ones you love.

You know what? I'll rant about lack of good doctors later. I'm just not in the mood for anger. I'm gonna go snuggle up with Bill for a while. This week, and the ones that follow, are going to be hard and involve many hospital visits.

In other news, I'm an ordained minister now.


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"... Nature, whose sweet rains fall of just and unjust alike, will have clefts in the rocks where I may hide, and secret valleys in whose silence I may weep undetected. She will hang the night with stars so that I may walk abroad in the darkness without stumbling, and send the wind over my footprints so that none may track me to my hurt: she will cleanse me in great waters, and with bitter herbs make me whole."
-Oscar Wilde