Why do we treat our doctors like gods act like what they say is our only option and don’t ever think maybe they could be wrong? There are so many of us who do this. WHY? Maybe there having a bad day and just are not paying attention to what they tell us. Maybe they have too many patients that the money is what motivates them. Here is our story of what happened to my husband Paul in the last year. You be the judge and decide.
We had been with the same doctor for about 9 years, when we switched to a colleague of hers for last year. . At that time we thought we were making a good choice for his health and going with someone who knew their stuff He had been in the HIV field for over 20 years. Boy we were wrong. I don’t know what happened or how things got to be where they are now. I was going over my husband’s latest lab results and what a change I see. I cannot believe how much my husband’s health has changed. He has been HIV + for over 13 years. He has always been considered HIV successful. Now his health is spiraling downward and he is getting so many other health problems due to this. In August of 2011 we went with this doctor. At first numbers we just slightly dropping but we thought it was due to the fact that Paul kept getting food poisoning and that was weakening his immune system. In April he had just had high T-cells and undetectable viral load. But the doctor thought it was best to switch his medication to Atriplia. He was having bad abdominal pains and doctor thought it was AZT in his medication. His other regimen Sustiva and Trizivir had worked excellent for over 7 years. Within a few weeks it all began. By MAY 2012 he was in the hospital with extreme confusion and fatigue. A high Ammonia level and they wanted to do a Spinal tap because meningitis was suspected. We spoke to doctor who said spinal wasn’t necessary and he would treat him on an outpatient basis. At that time his amonia level was 56, hospital said he should be in a coma with levels at 56. We went to a follow up appointment with the doctor in a few days. By then ammonia level had spiked to 156. He was going 1 time a week for ammonia testing and levels just kept getting high and higher and now they are talking about possible liver failure. Highest his level got was 256. I started researching the regimen the doctor had put him on and discovered that this was possibly the cause of the ammonia level and that this medicine did cause liver failure. He was on this medication for only 5-6 weeks. I told him we needed to switch medications and go back to his original regimen. The doctor said now the regimen would no longer be effective. So he was not allowed to take any medication for 3 weeks. This totally freaked him out. After the resistance test results came back the doctor said he was pretty much resistant to all the HIV medication there was. So me and Paul decided to just take his original regimen Sustivea and trizivir again. By September we decided we needed a change. Paul was going to the doctor for weekly doctor visits and getting lab work 2 or 3 times a week. The test results were either lost or inconclusive. We were getting nowhere and feeling so hopeless. The doctor we felt was giving up on Paul and we need a doctor who would fight for him. We looked into moving to the city where there was more access to a lot of doctors in the HIV field. That just was not possible due to the extreme high cost of living in the city. We finally saw a doctor and he did a full battery of test. We found that now that he is no longer on Atriplia he has normal ammonia levels normal cholesterol levels kidneys and liver are working fine. His T-cells are at an extremely low level and viral load is high. For some reason his body is extremely weak and he is constantly falling down. He now uses a cane and is waiting for his walker to be delivered. The doctor thinks the falling down may be some damage to his brain from having high ammonia level for so many months. We are doing one more set of tests to see what will happen if they are going to switch his medication. I say all that to say this I don’t know where we go from here but our fight is far from over. Paul struggles daily and has good days and bad. Some days he can hardly walk and other days he is ok. But he fights daily. He tries not to look at what can happen and live each day to the fullest. I am sure it isn’t easy for him, I now it isn’t easy for me or his children to see him suffer. But we are optimistic that he is here for a reason and his story is worth telling. HIV can affect anyone. We may trust our doctors and go with what they say but research what they say. I trusted this doctor too much and let my guard down. I believed him. I will never do that again. I am thankful for his new doctor who comes from La and has been in the field for many years. I know Paul will recover. We are thankful to all our family and friends who keep him in their thoughts and prayers. We need all the positivity we can get. I know there are so many of others out there who are fighting the good fight also. That is all we can do.
As you know I have been sick for a while. I got a call from my doctor yesterday, he was talking to me about my test results. Everything is going good now that I’m back on my regular regimen, I don’t understand why he took me off of them to begin with. He claims that there is still resistance, but t-cells went back up and viral load went back down. So where is the resistance if they are working. I know that he made a mistake by taking me off the meds, will he admit it, no. I think I know my body better than anyone, why I let him do that I will never understand, but I’am taking a stand in my own health care. If I don’t agree with you it’s not happening, I’m no test dummy for the new meds coming out. He had me on Atripla a med that causes liver failure, so now I have to worry about my liver, wether it was affected or not. A lot of the new meds causes liver failure, we really need to study what the doctors are trying to give us. So for one thing to go good, we have to suffer in another way, not cool. I’m asking questions and studying the meds the doctor wants to give me, no more test dummy here. I’m just glad that my other meds are working again, even after being told I could never take them again. They are working, so what now Doc?
Went to the doctor today. Usual routine yap, yap, yap, let’s draw some more blood. We still can’t figure out what’s going on. I get pocked every time I go in (it’s like being a junky again) and always wanting to change my meds. I was doing fine on my last regimen and now we are changing them for the third time in a year, this has to be a joke. I’m no test dummy, I just want my health to be back where it was. I hate being depressed and stressed over certain things going on in my life right now. You wanna see a strong person, well you just read his post. No matter how sick I’am or down I’am, I will not show it, may talk about it, but wont show it. That’s WHAT’S UP. PEACE
I know I haven’t posted anything in a while, so I’m gonna try today. As you know I have been a little sick for a while, my liver has been giving me problems; if it’s not one thing it’s another. People think that if you become HIV+ all you have to do is take pills. Well people, it’s not that easy, think of the side effects from the virus and combine that with side effects from the meds; who wants to live that way? I worry about my health all the time, I have kids I want to watch grow up; I’m not done in this world, I still want to do my activism. I want to reach as many people as I can, this virus sucks. It’s not time to sit around and watch the rest of the world get the virus, all activists must work hard to spread the word of this horrible killing disease. I was depressed to hear what can happen because of my liver, I don’t want to fall into a coma. I kept being told that my liver is giving out, it’s not what I want to hear. It got to me so bad I was afraid to take naps, not knowing if I would wake up or not. Let’s keep spreading awareness so others don’t have to suffer what some of us have been going through.
Just some thoughts from me.. A little over 3 years ago we decided.to come out and be open about our lives, my husbands sickness, how it is to be a family that is affected by HIV/ AIDS. It was not easy to do this. It took great courage from all of us but most of all my husband paul. We begain going full force with our activism. We started with social media Twitter was the launch.We started doing ar…ticles,interviews, etc. We have gotten so much support from all over the world, have met some celebrities, and many amazing people who now are part of our family. Through your friendships,love, support it gives us courage,strength, and the will to know we can survive. We started.@The intersection project to bring awareness that this disease is real. It is now world wide and reaching more then 10,000 people. I am so thankful for my husband and all our friends and family on twitter, fb,.instagram and all other social media. Together we can make a diffrence. #END-Ignorance…
This month marks the first anniversary of, The Intersection Project, it all started with Twitter. I started by tweeting about my life; with that I got some followers, and I of course, followed back. I made some good friends on Twitter; it is very important for me to have friends that care about not only me, but my well being, and of course, my wife and kids.
After being on Twitter for a little while, I felt I needed to actually do something. I got my idea after seeing a couple of homeless people holding up a sign asking for food. The attention those gentlemen got was enough for me to want to make my own sign. After making the sign I had to find a location to start, so I went to a busy intersection. The attention I got was not what I expected; I had both positive and negative, but I had people’s attention and that’s what I wanted. I was able to bring awareness to that intersection without having to bother anyone; I just needed to figure out what my little project was going to be called; so I came up with: The Intersection Project http://www.facebook.com/TheIntersectionProject?ref=tn_tnmn A little while after starting The Intersection Project I got the attention of a few other people whom I’m still friends with today and got some interviews and even got to do my first radio interview on POZIAM Radio Show http://www.poziam.com. It was an honor to also be interviewed by Desert Perks http://desertperks.com and Positive Lite http://www.positivelite.com/.
My wife and kids were able to talk me into starting a Facebook page for The Intersection Project; I was a little unsure in the beginning, I had never done that before. I’m surprised I survived Twitter this long. Since beginning the Facebook page, The Intersection Project, it is now being seen in 20 Countries, 11 States in the U.S., and in 9 different languages. I just want to reach out to people and let them know about this horrible disease. I’m not trying to make it famous, I’m trying to make a difference. I want to help educate others on HIV/AIDS, I also want to help END IGNORANCE and STIGMA.
I’m not much to discuss religion or politics, but when I was asked about where I stand on same sex marriage, I have to be honest about my answer.I’m all for it. Who am I to try to judge or stop anyone from marrying the one they love. When I got married I didn’t have anyone from the LGBT community telling me that I could not marry the one I love,;so I’m not going to be a hypocrite and tell anyone who they can, and cannot marry. We all deserve to love whomever we want.
This year will make it 13 years of being HIV+. Everyday it’s a struggle, both mentally and emotionally. I get scared at times when I get sick; I always wonder if this is it…is this the day that I will be passing. It is really hard to live with that fear; I have to stay as strong as I can for those that love me. I really don’t like anyone to see me sick and worry, so I do my best to stay strong. That has not worked out for me too well lately. Family and friends are starting to see the impact that this virus is having on my life; That’s not what I want, I do not wish this on anyone. The meds I take are very strong and do affect my organs at times. Have no pity on me but please do what is right and learn a little bit about HIV/AIDS.
I would like to THANK everyone who has supported me on Twitter, Facebook, and Tumblr. Without you all, I would have no one to share my life’s thoughts with. Please get tested and always practice safe sex, also if your an IV drug user like I once was, please do it safely.
To my personal friends out there, you know who you are, thank you so much for your loving friendship; I love you all.
Today there are many things I can be proud of; sometimes I take a moment and just stare at my kids, listen to how well they are doing in school, and even enjoy the time I spend with them. I’m proud of them all, my oldest will be graduating and headed off to a good college. She has always been by my side and supports me 100% in what I do and believe in, I guess she gets that from her mother. I’m very proud of her.
My oldest boy is in ROTC in school. I know that one day he too will be off to college, I remember watching him grow up, he always wanted to be at my side. Now I’m trying to stick to him before he leaves. I’m very proud of the young man he is turning out to be.
My younger boys, Luke 8, and Milo 8 months; I’m very proud of Luke and his interest in HIV, he is a big supporter of mine and is not afraid to share that. He wants to be at every intersection I hit, he may get his bravery from me. My little 8 month old is a miracle, my wife had so many problems while she was pregnant with him; we didn’t think he would make it. My wife nearly died twice while pregnant with him and again when he was born.
I’m proud of my wife for always being by my side and supporting me in all I do, she takes very good care of me. I couldn’t be any proude; what more could I ask for? I’m a proud husband and father of 5, my fifth kid is just now being a part of my life and I’m proud of the young lady she has become.
That is a lot to be proud of. What I’m really proud about is the fact that I’m alive to enjoy it all, the laughter, the heartaches, and all that life has to throw at me. I’m not always in good shape; but I do my best to enjoy life while I’m still here, life is not always going to be good, but we need to embrace what we have and be proud that we are still here to enjoy it.
This past year has been a great year for my family and myself; my son was born free of HIV, and I also started The Intersection Project, (which can also be found on facebook http://www.facebook.com/TheIntersectionProject?ref=tn_tnmn) I think it’s a great way to reach out to the community, without having to disturb anyone’s day. Seeing that not everything can be as great as I wish I have found myself and others dealing with alot of stigma. For some reason when it comes from a stranger it’s not as bad as when it comes from your own family, it hurts when they say the things they say, and then they have the nerve to think there is nothing wrong with it.
It’s like this, I believe in equal rights, I believe that every human being should be treated without prejudice. I have family that think other wise, I have family members who say “How can you stick up for those faggots?” (Excuse my vulgar language, but I’m trying to keep it real. I assure you that my wife and I raise our kids better than that and don’t condone such idiocracy.) I may not be gay, but those type of words can hurt a person’s soul and nothing is worse than a tortures soul. When I’m walking down the street holding my wife’s hand or kissing her out in public; I don’t get a gay man telling me that it’s wrong, and telling us we can’t sleep together. I especially don’t have anyone telling me who to LOVE. So what gives me the right to judge same sex couples and tell them that they cannot kiss, hold hands, sleep together, and most importantly who they should or shouldn’t LOVE. I’m human just like everyone else; I love people, I love the fact that we as human beings can have feelings of compassion for others.
I know this past year we have dealt with stigma. My wife was expecting and we would get people that would just say some off the wall stuff; we would get asked a lot about the baby and if it was going to be okay, some people even told us we were being selfish. However, the ones I tend to like the most are the ones that practically run when they see us coming. Sometimes I just want to yell to them and say “Hey stupid, your more of a danger to me than I am to you.” If we were that much of a threat to the community we would not be walking around freely, it can be too much sometimes.
This coming up year I want to make myself more available for speakings, I do need more time when speaking though, 10-15 minutes doesn’t seem to cut it anymore. I will always continue doing what I do because it’s my passion. I want to be able to reach out to the community in any way I can. HIV/AIDS is not talked about as much as it should be. I get tired of seeing events come and go and yet people don’t take this disease serious. What I go through on a daily basis is not fun, I would not wish this on anyone. So I want to do all I can to ensure that people have the proper education when it comes to HIV/AIDS; which could not only prevent the disease from spreading, but also help put an end to the stigma.
I want to thank everyone that has supported me this past year, much LOVE to you all. I also want to thank my wife and kids for always being by my side and their LOVE and SUPPORT, I LOVE YOU.
My wife and I have been together for over 15 years. Before I found out that I was HIV+, I had three kids under five years of age. We were told that we could never have kids again. We tried to get advice from doctors and they were against it, no doctor wanted to help us; we were pretty much on our own. We did our own little research and decided to try it on our own (we could probably teach some doctors a little thing or two). Anyway, as time went on-maybe five years later we found out that my wife was pregnant. We were so happy to hear the news, as soon as she could my wife took an HIV test and it came back negative as all tests had before. My wife’s doctor was very happy to be a part of this miracle. Due to the stigma surrounding HIV/AIDS her doctor asked that we not let his nurses know of my status. During her pregnancy my wife took a couple more HIV tests and again they were all negative.
When it was time for my baby to be born, my wife experienced stigma from nurses in the hospital who did not want to help deliver the baby because of my status. People let’s remember if mama is negative then the baby will most likely be born negative.
My baby is now seven years old, healthy as can be, and wanting to learn more about HIV. He knows his daddy has it, but he wants to understand the disease. As most of you know we just had another healthy baby boy who is now five months old (let me tell you my boys have there daddy’s handsome looks).
There are people that know about my status and then there are those whom I choose to tell. When people first find out about my status some just look at my kids and make faces. Those that know me and my family know our situation, those that don’t know us don’t understand. My wife and I talk about the looks we get and the comments that may be made all because of my status. Like my wife and I say, all people have to do is ask. We are not afraid to share our story or even let you know about our kids and there status. The kids my wife and I had after finding out that I was HIV+, are indeed miracles in our eyes.
Instead of people trying to guess our status behind our backs if they are so curious; they should JUST ASK. I don’t regret having any of my kids and I’m sure my wife feels the same way.
For weeks I have been telling my father that I would write a guest blog, but it just hasn’t happened. I’ve been harping on trying to think of the perfect story to tell, or the perfect quote to use….and nothing was working; nothing felt or sounded right, and I couldn’t figure out why. To me writing is something that comes easily; almost like second nature…so then why couldn’t I write about something that was and still is such a huge part of my life? I guess it’s because I don’t really know how to start or how I should say it exactly.
Do I talk about the fear I have of my father dying, or how thankful I am to have another day with him? Do I talk about the way kids in school bullied me when they found out my dad was sick, or the friends I had that didn’t care? Do I talk about the anger I feel toward the disease for infecting my father, or do I talk about the gratefulness I feel toward the disease for allowing my father to fight for as long as he has?
I couldn’t pick one or the other, and I was afraid that if I did pick one I would somehow choose the wrong one. So I am not picking any question in particular I am just writing my story, well not so much my story but more of bits and pieces of how this disease has effected me while growing up. Now bare with me I have never actually shared my story or how this disease makes me feel…so it might not flow all that well or coincide the way most stories should….here we go.
I remember I was really little (around four or five) my brother and I would always wake up to find my father gone for the day at work, but for a few days he hadn’t really gone to work; he instead stayed home because he was sick. I had never really seen my dad sick before, but he looked so scary he was really skinny and he was constantly throwing up. I don’t remember when or the exact reason he went to the doctor (I am guessing it was because he was so sick) but he went for a checkup. However, I do remember a few days later going to the doctor with him along with my younger brother and my mother. My brother and I didn’t go in the back with my parents we just waited in the lobby and I remember my parents coming out and my mom was crying so bad, and I couldn’t fully understand why.They told us my dad had HIV, but I had no idea what that was; I doubt my parents fully knew what it was at the time. I did know it meant he was really sick though…and I was scared.
After my dad found out he was HIV+ I never really had the chance to see how it effected him because he was always in and out of prison. I remember feeling such anger, resentment, and jealousy towards my friends who had their dads…to me it just didn’t seem fair because my dad was behind bars and once he did get out I was afraid to get too close because he was dying. I remember watching my mom call the prisons; she would cry and plead with them; trying to ensure that my dad received his medication before it was too late. It was all so surreal; but that was my life from the time I was five until I was about thirteen. (mind you I am in no way complaining because those experiences helped shape me into the person I am today) When I was younger kids would ask me why I would read at recess instead of playing, but I never answered them because how does one kid tell another kid, “I read all of the time because when I read I get to escape prison, I get to escape HIV, I get to transform my life into whatever I please…I get to feel so free.”
I never really told any of my friends that my dad was sick; I had seen my dad lose so many friends and I didn’t want to lose any. However, by the time I got to high school I had told a three of my friends that I had known for about ten years…lucky for me they didn’t care. I remember my sophomore year kids found out my dad was sick and they were not as accepting. They would throw food at me, walk by me and push me to the floor, call my dad a faggot, (excuse my improper vernacular, my daddy raised me better than that) and do anything they could think of to make my life a living hell. I however never told my parents because I couldn’t think of a way to tell my father that kids were bulling me both physically and mentally because he was HIV+…it got to where I would act like I was sick just so my parents wouldn’t send me to school. Eventually, I asked my mother to home school me never actually telling her the real reason until months later.
I am now eighteen and I try not to relive those memories; not because I am in any way ashamed, but because it’s really hard to talk about because the pain is still there. Looking at my life as much resentment I feel towards this disease I also feel an odd sort of gratefulness to it also. The disease opened my eyes and allowed me to see the world differently; it kept me from going out and experimenting with drugs, (which is how my father contracted the disease) it kept me from sleeping around, and the most important thing I have learned from the disease is not to judge people and to just love life. I have always been a huge supporter of my father; I’ve done interviews with him, commercials, I even go out with him for The Intersection Project. All of which became so much easier for me when I was able to gain a better sense of who my true friends were and just how idiotic people could be. I feel that my father and mother are raising us the right way. Thank you Dad, I love and appreciate you and mom very much!!!
It’s been a little while since I wrote a blog. My kids go back to public school in just over a week. It’s been a couple of years for them and I’m just worried that other students may bully them for my HIV status.
As a father my first reaction is to protect them and keep them safe from any harm. After coming out about my status, my kids were picked on. We took them out of school in hopes to stop the bullying. My kids made there own decision to go back to school, I worry for them but they are so educated on HIV/AIDS I really think that they may do well against any ignorance they may run in to. My kids safety is important to me and I need to trust that they will be okay.
As a family we have cried together and fought together, the awareness we try to bring to the public is our own doing. We don’t get paid, we do it with compassion in our hearts. We are not a judgemental family, I work hard in raising my kids the right way, we are all EQUAL and we have no right to judge anyone. We are all human and we need to treat each other that way.
This school year will be interesting, I support my kids fully and know they will make the right choices.