Yes, many may think there is nothing positive in being positive…but as I have always been taught, and believe, even from something bad or tragic, we can find something good, something to learn from and something that makes us stronger. I am not going to sit here and write that i don’t cry sometimes and feel hopeless. I just went through it this week when I got back from my vacation to Disney. I learned that a very close friend and founder of Red Hispana, an organization here in south Florida, had passed. Every time this happens, it really shakes me. I know that we are all going to die, but when someone dies from HIV that I have seen with my own eyes was doing well (well, at least the last time I saw them), it really scares me. I get very very scared. You see, having HIV/AIDS is a process. You go through different cycles. I can say I don’t feel the same way as I did 10 years ago…I was healthier and stronger than now. And it’s not that I am sick, but I have neuropathy which hurts and it’s caused by HIV meds…one of the reasons also why I take coenzyme Q10 (I talk about it a little in one of my responses in my last blog and give some tips on natural medication).
This illness is not easy. We have to deal with many things, mentally and physically. For example, when someone gets a cold that does not have HIV, they say ‘OK, I feel sick’ and continue their life, etc. etc. As for myself, when I get a cold, I freak out everytime, because in the back of my mind I think ‘OMG could this be it…is it finally going to end for me here? I have been poz for 20 years…how much luck can I have??’
Same thing happens every 4 months when I take my Tcell (cd4) count and the viral load count. OMG I am terrified, and this has happened since I found out about my condition. I am always scared of resistance from meds…has my disease progressed..am I going to get bad news? It’s mental torture. And this is one of the ugly sides of this illness.
I get very upset at people that tell me ‘Oh, HIV is not a deadly disease anymore…it;s like diabetes’ etc. etc… Well, yes, I know this. Thank god there are meds that keep us alive. But at the same time, these medications have harsh effects on our bodies. Sometimes my mouth tastes like metal…this is what I consider the bad of this illness. I cry sometimes and think ‘why cant I get a break?’ Everyday of my life taking these meds…think about it everyday..day and night…it is NOT easy! So please, if someone is reading this and think ‘oh, who cares if I don’t protect myself..look at magic Johnson (or even myself ). I will just take some pills and I will be alright’ are very mistaken! Don’t get fooled by the exterior. I have fatigue everyday, my body hurts…its like one hole opens, I close it and then another opens and I close that one..it is a struggle! Very, very hard. It’s a battle. And we have to be strong . Very, very strong mentally!
Have I mentioned the part that we have to hide our status sometimes or, like myself, had to say I have lupus, etc., etc. when people have asked my partner or some family member ‘why does she get sick so often?’ Remember, I became positive when I was just turning 18 but believe I got infected at the age of 16 by my first boyfriend. It’s just been a long TIME and we all have the right to be exhausted, tired, and even angry! I am grateful that I have lived so long, but at the same time getting infected so young was harsh, and not knowing what being married or having children was. I was a kid…I just thought my life was over…but with everything. I have managed this disease! And have lived a pretty much productive life. It has been a long battle but I have had many happy moments and I am very blessed!
Here comes the part of the good as I started writing in the beginning ..it made me a stronger woman, more spiritual! It made me take care of myself more! I believe, through illness, we purify our souls. It made me more compassionate and I have learned and taught many people in the process on this mission I feel I have in this earth. Some people just don’t know how lucky they are to be healthy. But, then again, when I look at it from a different angle, being positive changed my life in many positive ways. Maybe if I would have never been positive, I wouldn’t be the warrior and fighter that I am. I feel I can help many, many people with my story…young, old, women, men, gay and lesbian women…I can reach them all…that is why it was important to show my face. This is the way people feel more impact and maybe they will hear or it will have an affect on their life and they will protect themselves. Or maybe they are positive already and will learn from me cause I have been there, done that. I think one of the biggest things that can keep us healthy is keeping ourselves involved and busy in any way we can…not think too much…even though I know sometimes, when we are ill, we can’t really be active, but there is always the internet. Find ways to help, read, and educate yourself. You will learn about your body. Ask questions to people that have experience…your doctors, etc. etc..
As far as myself, I am so self educated in my illness and medicine that doctors here in the United States think I was a doctor in my country LOL…and that is because from a very young age I started reading books of medicine and reading a lot. I believe having knowledge and knowing my body saved me many times. I also DO NOT wait to get very ill when i feel something wrong. I go to the doctor quick…this is very important.
Now I am ending this blog with this thought..well, at least is a thought that I always keep in mind… HIV/AIDS is like a murderer living with you that is trying to kill you every second of your life…Imagine that! Someone that sleeps with you that wants to kill you and will find any chance it has to do it…so we have to always keep it sleeping..and we do that with taking care of ourselves, taking our medication, natural and HIV meds if it’s your time to start…trying to be positive, stay active, good nutrition, being spiritual and just continue to fight!
ALWAYS REMEMBER WE ARE WARRIORS, SURVIVORS AND FIGHTERS! and we will continue with this struggle untl the cure comes!
Always with love,