I’m sorry I’ve stayed away from regular updates and I hope you’ve all been able to check in with me on PositiveLite.com. I’m hoping to get back on track but I know you guys understand that HIV and cancer combined with the trials of everyday life is a LIFETIME movie gone horribly wrong.
Do you ever have a day where you very nearly convince yourself this diagnosis never happened? That they must’ve made a mistake and surely you don’t have this disease that other people get?
Sometimes for a solid five minutes I am able to tell myself that back in November someone made a horrible mistake- 3 times- when they went over my lab work. “I feel FINE!” I say. And then my charming little HIV-related chest rash pops up and reminds me, “you ARE HIV positive. Shut up and take your pill”. I forgot my pill a few days ago. I spend so much of my day trying to feel normal, hiding things, worrying someone will read the name on the pill bottle or find one of my scripts and wonder why I have to see that kind of Doctor. I keep the pills in the bottom of my purse and if I don’t hear the rattle, I forget. I get cocky with my “undetectable” viral load. I shrug off the need to put a reminder on my cell phone. I did download the HIV meds app, which is brilliant and very helpful. But then I was terrified someone would pick up my phone to check and see what kind of cool apps I had, find that one, and the questions would start.
I know those of us living with HIV are normal. I know that. But I can’t help but hate how different we are too. The constant alarm I feel when little things happen that I would usually dismiss. Colds, pimples, constipation. I hate the symptoms it has brought out in me and the person I love which has made life a revolving Doctor’s office door. I mean how many 26yr olds with an anal fissure do you know? That many, huh!?! At the beginning of this new year I was given the ‘all clear’ by my Infectious Disease Doc to only come back every 3 months. My viral load is undetectable and my T Cells are excellent. My Husband is still on a close watch, with a monthly visit, as a result of his Non Hodgkin’s Lymphoma. We “wait and see” whether or not he will need more HIV medications because of his chemo therapy and everytime I walk into an exam room I feel like a dog who ran too far on a choke collar. My air gets cut off, my tongue feels like it’s made of steel and my body shakes so violently sometimes I strain a muscle in my neck. It’s really not cute at all. I fear this is my new permanent state of being. I know it’s not but sometimes that’s how it feels.
We are normal. We are strong. We have the right to live a life full of whoever and whatever we love, same as anyone else. Is it too much to ask though that I be able to do it without an anal fissure ?