This is just a quickie to say hello. I don’t have the energy or the brains to write coherently. I am in the hospital with a suspected case of Aseptic Meningitis. In other words, my body did not take well to my home igg infusion of the subcutaneous medicine. This is the infusion I have been so proud I am able to take because the IV versions were making me too sick:(
I have had many reactions ever since I have tried to take igg (immunoglobulin) replacement therapy . The nasty part is that I desperately need the stuff. My body does not produce enough iggs and in some cases my body doesn’t produce it at all. This problem, called Primary Immune Dysfunction or Hypogammaglobulemia, is at the root of all my health problems.Different people have deficiencies across the spectrum. According to the textbook, my problem is an easy one. However, I have begun to believe that this a stack of cards and that once one fell with me the momentum just increased and Or at least that is what I have come to understand and believe.
My body is missing some of its natural immune system and has literally turned on itself looking for answers. The plasma product I infuse (Igg or IVIG) replaces my crappy immunoglobulins with those of healthy people. In fact, it takes 25 thousand people to make up a batch of the medication I infuse. It is very complicated. When I have a reaction, one of several things can go wrong: 1. My body recognized the new, healthy cells (?) getting pumped in and says, “Yo, bitch! These aren’t ours! Get them out of here! Attack!” 2.Or, It could be,the suspension the product is mixed with is causing me to react (possible but not probable since it seems to happen with all of the brands after a while). 3. I am a space alien and human blood products are just not compatible with my alien blood.
Personally, I am voting for number 3.
In any case, this happened to me in early December and now here I am again. The doctor wants to take away my goodies (infusions) all together. I can see that from his perspective that would seem logical. But, he seems to be wearing spectacles that give him a very different view from mine. I know that without the medication at all, I feel weak, painful and half dead. I get all kinds of infections and feel like I will die pretty quickly.
So, what to do?
I am going to go get another opinion. That’s all I know to do. If the next doc says to get off of the med and stay off then maybe I will. I don’t know. I cannot face that thought right now. I am doing good just to write this and think it through.
Perhaps I should start trying to find my space ship and ‘phone home.’ I can’t just sit here eating Reese’s Pieces. I need to get to a place where I fit in and my body isn’t constantly in rebellion and making me miserable. Hey, I could turn myself in at Area 51 (that is the alien one, right?).
Maybe they have enough specimens of my race to fix me there.
Okay, I am devolving really rapidly here. I think I will have mercy on anyone crazy enough to read this and stop.
E.T. PHONE HOME.