primary immunodeficiency

I hate when people act like primary immunodeficiency is my ideal scenario.
“Oh Stephanie you’ve missed a lot, bla bla bla we need to make it up you’ve missed so much, you’ve missed all the things we need so many extra meetings because you’ve missed SO MUCH.”
Yes, I realize that. As soon as I stop puking my guts out I will be sure to make it up.
My immune system doesn’t work properly. I hate it. Trust me, it sucks. Don’t sit there and patronize me as if I enjoy being sick and miserable. Wtf.
“But you were fine on Friday” WOAH it’s almost like illness is not a constant stream. It comes in waves of awful.
I just want to scream and punch someone but oh wait.
I still don’t have the energy to leave my bed. And it would be highly dangerous for me to go anywhere I might come into contact with large numbers of people right now. Aka school.

If you ever have any doubts about how bad the stigma against AIDS was in the 90’s, then you should know that unrelated disorders were treated differently because of it. Patients with primary immunodeficiencies, which are an altogether different type of disorder, were advised to hide their disorder because of nasty, ill-informed people. I was born with a primary immunodeficiency, and when I was diagnosed in the mid-90’s, my immunologist told my parents not to tell a lot of people about my disorder because they would think I had AIDS and assume things about our family.

I remember being seven or eight and not understanding what this was or why we couldn’t talk about it. My parents tried to explain, but it was hard to explain the AIDS epidemic in a way a child could understand, especially when I couldn’t fathom what this had to do with me.

Even with having grown up with a compromised immune system and dealt with all the emotional baggage that comes with that, I can’t imagine how people with AIDS feel with the additional stigma placed upon them. Although it’s easing up more recently, there is still a lot of misinformation about HIV/AIDS.

Please get your children vaccinated, not only for their health but the health of other children around them. I have primary immunodeficiency disorder, which essentially means that I’m unable to receive vaccinations because of how weak my immune system is.

A week ago, a girl that I live near is unvaccinated because her mother says she doesn’t want her child to get autism, which she never told my mother, who is this girl’s babysitter. I sat around this girl for an entire day, and you know what I was in the hospital for recently: Pneumococcal Disease. This disease causes infections, pneumonia, and even meningitis, and I could have died. You know what vaccinations eradicated: Pneumococcal Disease, but because this girl’s mother refused this, I was in danger of dying. Please just don’t think about your child but the children around them as well.


So, about a month ago my immunologist told me I needed to make a decision. All my antibody levels dropped much lower than they should be. I mean, they’ve always been low (I assume always) but over the last two or three months they decided they didn’t like sitting at the levels they’ve currently been sitting at quite happily.
My IGG is 2.6 at the moment (in UK terms), and so I was told I have to decide whether or not I want to start IVIG.
I’ve decided that I’m going to start it, regardless of the thought that it’s a forever thing…
So, wish the commitaphobe in me luck…