I absolutely hate when I don't have something chipper to say. I feel like telling myself "Bitch get over it," or "Here we go again, damn is your life just drama?"
If I feel that way, I know others must feel that way. I know I've lost people in my life because HIV/AIDS is the illness that keeps on giving what I don't want, keeps on intruding, keeps on changing my life. For sure there's never a dull moment living with HIV/AIDS.
I know people say; How can she be sick? I just saw her, she looks great, or she was just Tweeting and Face Booking her ass off. Like how can she be struggling "that" much?
Nor do I want people to think living with HIV is a one pill wonder. For sure this is a hard disease to live with both physically and emotionally, but LIVE is the key word.
No point in pretending! No point in lying or giving half truths so people can like you. If people can't handle the authentic you, then you don't need them in your life.
By the same token, if the authentic you is to much for someone, they have that right to not have you in their life. And each of you have to respect the choices a person makes for their own life and well-being.
When you are living with a chronic illness you have to accept the days as they come. You also have to accept people as they come and by the same token as they go.
This need to fill the void has gotten me into trouble. It's made me over look danger when it was staring me in the face. By the way, NEVER ignore that inner voice that says this doesn't feel right.
Part of my secret to longevity, other than God's got a plan, is living in the right now. By the way, God can have a plan for your life and your free will can jack it all up. #ForReal #ForReal
So I try to stay connected to God's plan for my life. I do what I must to stay alive. I take my medication. I accept the changes and the hits as they come and I do it with just plain old common sense and healthy survival skills. It may mean some days, I have to be flexible and kind to myself.
It seemed to be working and then on Friday night I felt an physical exhaustion that I first assumed was from a full day, but by Saturday morning I was faced with a reality. HIV/AIDS is doing something to my body. The first thoughts are always, what is it? Is it something major or minor and how long will it last?
When it happens, they think herpes is attacking my nervous system to the extreme. I'm hopeful, but not in denial. Maybe this is passing and won't be as totally debilitating. The fatigue is definitely better today. But the pins and needle feeling all over my body is not letting up. Maybe in few days or so and I will be back to my normal, sooner than later.
My body has lived through some serious trauma. At one point I was sick enough that I should have died. There has been serious damage done that cannot be repaired. Not just from the HIV, but from the years of HIV medication. Yes the medications have helped to keep me here longer, but they cannot undo what's been done and they have done some damage on their own.
AIDS is a walking, living, breathing dichotomy. At one level we know the list of opportunist infections that one can get and we know how to prevent most of them, but its just as unpredictable.
I've woken up in the middle of the night unable to breath in a hotel room. Found an HIV doctor, had an ex-ray, told that my lungs were normal, come back home, get off the plane and be hospitalized yep, for PCP yet again.
I've been on the road. Gone to bed in a hotel room feeling normal and woken up and couldn't walk, and by afternoon I had Herpes Zoster sores from the top of my butt to the bottom of my feet.
I've gone to my therapist office and after the session got in the car and had to take a nap before I could drive home. Then hospitalized for a week to determine that they can't determine what's wrong with me. That's when the nerve pain really began. I remember my doctor said to me, "Well we have determined that its not going to kill you, we just don't know how to make it better, only time will tell." At that point I could barley hold my body up and the fatigue was debilitating and don't be confused, this was all with a non- detectable viral load. Which hypothetically means you shouldn't have any AIDS related illness.
Yep, HIV/AIDS is a walking breathing living dichotomy. I tell people in my life, just because I was OK last night, don't assume I'm OK today. You better check for yourself. And never assume that it's just me having a bad day, if I change my routine, something is wrong. That's why I try not to go to bed mad, cause tomorrow I may be to sick to apologize or make it right. Use my life as a lesson for understanding the people in your life with HIV and their daily struggle.
My BFF Luke said it best in a documentary on me. I never have a normal day. I don't have "normal" days like everyone else. My normal is abnormal and some days the abnormal is abnormal.
No matter what you are facing, you must live in the right now. Living in the right now will get you to your better tomorrows. It does not matter the dilemma you are facing; You must be willing to deal with it today to create space for a better tomorrow.
While I feel a certain kind of way about my honesty, I know it's the thing that has kept me alive. There's no way I can live with the weight of HIV/AIDS and the weight of what you think of me because I dare to share the weight of this disease.