Still arriving.

This blog will be about living my life as a young HIV positive male. My blog will reference medications I take, side effects I have, and general feelings during this life path. It is meant to help keep my friends and family informed about my health and general information to people just starting out.

07 July 2009

Disclosure

I am struggling MAJORILY. After 5 years of blogging and speaking about my status to journalists, being on television, speaking to large groups I never imagined that I would struggle with disclosure. Let me explain. In Atlanta I have a very small but VERY close group of friends. They are very supportive and always there when I get sick. That being said a large percentage of them were gay. I only have two straight friends from all my time in Atlanta. It's not that I am opposed to them...the opportunity just never arose for me to interact or meet them really. However, now I am in Chicago, all of that has changed. I have a few gay friends and more straight friends. I met them through a part time job I got as a photographer. None of them have EVER given me any reason to feel "threatned" or frightened by telling them but one just never knows.

I started thinking about this issue about 6 weeks ago when a fellow photographer was working and a big photoboard tipped over and hit him in the head. He suffered a pretty nasty cut and was taken to the hospital. I was no where near the location of the accident but there was blood all over everything. I know that HIV doesn't live outside of the body for more than 15 seconds, but do they? In the past for instance whenever I have been at my Moms house and something happens where I am bleeding I of course am the one that freaks out (she stays calm) and will not allow anyone near me until I get the bleeding under control. My concern is if this of course happens while I am working I don't really have the luxury of secluding myself quickly. So do I tell my co-workers/friends that I am HIV positive? It's not like people would be jumping up and down in my blood and if I remember my OSHA correctly all accidents involving blood are treated the same way. There isn't any extra gear if it's the blood of someone who is positive.

Grrrrr this is sooooooo frustrating for me. After all of these years I never imagined that I would find myself struggling with disclosure! I will think on this further and will blog what I decide to do and how it goes.

Happy belated 4th! Hope everyone had a great holiday.

James

15 June 2009

Why I Really Fight HIV...

Like some people there are times when I wonder about the meaning and purpose of my life. I think to this very blog. Tonight I sat down and read every single post and every comment all over again. WOW! I was a pretty bitter and angry person at times. Other times, I saw a scared little boy, afraid he was going to miss out on all life had to offer. What kept me writing? I looked back at some of your comments and have included 10 that I have received from you, my readers:

  • Anonymous said...You are very brave to be so open about your (well, ok...our disease). I am in complete isolation and "out" to nobody about it. Thanks for blogging so I feel I'm not alone.
  • Anonymous said...I admire you and thank you for your blog. I suffer from our disease in silence and isolation to avoid the shame my children would bare.
  • Anonymous said...I wish I had your courage. Your writing is inspirational. YOU are leaving your mark in the world. YOU are making a difference. Thank you.
  • Anonymous said...I am so touched by your emotions (1 Sep '06). I cried. Very very badly. I have never been so affected and moved by anyone, not even Mulan :) I have never read a blog (coz I think it's a personal "diary", even though it is meant to be read by strangers) let alone comment on one...I want to thank God for sharing your life so openly and bravely with us who need the strength, courage and direction. I will pray for all those around you too to continue to share their love and comfort with you.
  • Anonymous said...I have been reading through your posts. Thank you so much for sharing your life and struggles. I have HIV but I hvae kept it a secret from everyone and thus have isolated myself. Thank you again.
  • Anonymous said...I'm praying for you. I know I've always just been a lurker, but you have been a great source of inspiration to me.
  • Anonymous said...I was just going through blogs and stumbled upon yours. Its sadly beautiful. Its beauty is in the plain simple and honest language...
  • sally06 said...Hi James, I am a positive woman living in Italy. I have been reading just a few posts in your blog but I'm going on reading. I just write to tell you that I understand your fear to be unable to "see and live enough life"
  • Sharlene said...I am in my second year of medical school and we are in our "Skin, Blood and Lymph" section. I am learning a lot about life with HIV/AIDS from your blog. I appreciate the honesty in your posts and I thank you for helping me put life to a disease I only [currently and not even that well at this point] understand with facts and numbers. As I read your posts, I notice myself going through a wide range of emotions. This has been so enriching and educational.
  • i love what you are doing .please keep it up. `we` need to know that people care.this is my email, please keep in touch.am hiv poz.would like to meet peole like me, am female,live in africa. keep in touch ayo

You all have been such a HUGE source of support and love. When I first started this blog it was meant to keep my family and close friends updated on my health because it's easier for me to convey my thoughts and feelings in writing. What I did not know was that it would reach as far across the world as it has. I have received comments from coast to coast, Europe, Asia, Africa, from HIV positive people to negative people. This blog has been linked to medworm.com, about.aids.com, and several other blogs and websites. I never imagined that me sharing my life and personal struggles would be a source of inspiration.

Today just out of curiosity I put HIV blog into google search and it's with a humble heart I tell you my blog is #1 on the return list. The significance of that is the fact that the more someone clicks on my blog from google the more "popular" it becomes and thus moves further up the list. This of course is not a popularity contest, it's about you helping me get my story out there. I want my story, as odd as it is to me, to continue to be a source of inspiration and hope for people in the world who live in isolation and have no one else to turn to...either by choice or situation.

Thank you my loyal readers for being my inspiration and sticking by me through 5 CRAZY years. Here is to 5 more years.

Love and peace,

James

29 May 2009

ur happy thoughts please. Thanks and love to all!

EEK I had a staph infection cut out of my finger two days ago. I feel like shit today. Hopefully I will get the money for antibiotics soon. Keep me in yo

28 May 2009

Liberty and Justice...for ALL?

Picture it, Georgia 1983, A man in his early 30's comes out to his parents as having HIV. Horrified they disown him and never PHYSICALLY speak to him again. Now imagine it's 23 years later and he is in the hospital dying of AIDS related complications, unconscience, beside him is his loving "partner" of 25 years. He is there holding his hand, perhaps talking to him, hoping he can hear him tell stories of the time they met, or that wonderful vacation that they took together. All of a sudden out of nowhere a hospital security guard comes in with a group of people that the partner has never seen before DEMANDING that he is not welcome in the room anymore and that he must leave the property. They are the dying mans family and want to be alone with him. You are escorted out of the room and will never see him alive again. One day you are informed that you lover has passed away while you sat at home...helpless. You try to contact the family to find out about funeral arrangements only to be told that they have possession of his body and you are ABSOLUTELY not welcome to the funeral.

Does that sound like a nightmare to you? That is a true story that happened to my friend in 2006. I joke a lot about wanting the tax benefits of marriage. Honestly though, it's all about legal protection. I do not see for one minute where a family that completely turned their back on a loved one has the right to come back in the last days to exercise rights that they threw away. This my friends is not an uncommon occurrence. When Chad and I flew to California and got married we were assuring ourselves that in at least a handful of states we were protected. We paid $90.00 for our licence and was afforded all the rights of our heterosexual counterparts. Compare that to the THOUSANDS of dollars that people in same sex relationships have to pay (attorney's fee, court fees, etc.) to get a FRACTION of the rights.

I feel that opponents of same sex marriage really do not think about what their lives would be like it their relationships had to be structured like ours. What would it feel like to think that you have you entire life in order and God forbid anything happens to you and you loved one and all of a sudden the rug is snatched out from underneath you. It would be like constantly walking on eggshells to prepare for the worst.

The ultimate goal for MOST people in life is to meet someone and settle down and build a life together. When we do so we expect that the person we chose will know and love us well enough to do what is best for us in the event we can no longer make those choices for ourselves. We shouldn't need a state or federal legislature nor a local or federal supreme court to give us the same rights that heterosexuals get by simply signing a piece of paper and saying "I do."

05 April 2009

Unprecendented!

Two blogs in two days!!! This is unheard of! I just wanted to invite all of you out there to join a really cool HIV/AIDS group on facebook. The link can be found at http://apps.facebook.com/causes/128107/57580606?m=7638c73a While you are there look me up using my name! James McLarty-Lopes. See you soon.

James

04 April 2009

A New Era

Hello out there in the blogosphere. It's been quite a while since my last posting. I hope that all of you who have followed me through the years have not given up on me. Life gets hectic at times and as such I either forget to blog or...well errr there really is no or, I just forget. There have been a lot of things going on so we can catch up.

I want to start this blog posting off by saying goodbye to a friend of mine...Justin Bush, 24, of Atlanta, GA who passed away at 6:30 last night. He was a mess but will be missed by all who really knew the person he was.

I really can't recall if I have stated this is a previous post or not so I will here. If I have please forgive me. I officially am married now thanks to the great state of California!!! Chad and I were married into wedded bliss (or unbliss HA HA HA) on September 2, 2009 in San Fransisco (I KNOW I KNOW...CLICHE). But I digress. Unhappy with the job market and general attitude of most Southern people we decided to relocate to (I would like to say an ever warmer climate but no) Chicago, IL. We packed up the Budget truck on October 31, 2008 and moved to Chitown. Chad found at least temporary employment and we're happy here, despite the fact that this was their coldest winter in 26 years.

I was able to stop taking the painful fuzeon shots (for HIV) and went back on an earlier regimine. It didn't work for too long but anything was better than those damn shots. I cannot even begin to tell you how much I was over the shots. I do have a doctor here in Chicago that I go to see again this Monday for my new cocktail of medications. Joyous occassion.

Followers of my blog since the beginning, or even if you're a new comer and read the old posts WELCOME!, know how much I despised President Bush. As the entire World knows there is a new comer on the political scene. President Barack Obama. Chad and I were able to go to Grant Park, in Chicago, on election night, where he was giving his victory speech. WOW. There wasn't a dry eye in the park. Everybody was hugging everybody. It didn't seem to matter if you were rich or poor, gay or straigh, housed or homeless. There was so much love going around. Thankfully not like the free love of the 60's and 70's that required penicillin after you experienced it. HA HA HA LOL...I made a funny. I look forward to seeing what this Dark Horse Candidate can really do once he gets his feet wet.

Chad and I last night were discussing Justin's passing. While very sad it was only a matter of time. He rarely EVER went to the doctor and certainly did not take proper care of himself. Please don't e-mail me saying that I am cruel because you interpret above statment as he had it coming. That's not at all what I am saying. As much as I have bitched and complained about meds, side effects and the drug company conspiracy in this blog I am very much aware that it is my desire to live coupled with the medications that I have lived as long as I have. I have been tired many times. I have been weak many times. However, through the times in the valley I have always said "I want to live." In comparison, Justin too said he wanted to live, the difference being, he waited far too late to make that decision. He was only 24 and ravaged with HIV and AIDS defining illnesses. Who knows why Justin never really sought treatment? Perhaps the stigma of having HIV stopped him. Perhaps he just didn't want to have to acknowledge the fact he had it. The only person who could have answered that is gone. Speculation will neither ease the pain nor bring him back. Now it's about remembering his smile and moving on with the lesson of I want to live.

Until next time...take care of yourself and each other :)

06 May 2008

My Grandma what an un-socialized nation you have!

I must admit that I am a Michael Moore fan. I know that he makes a lot of Americans angry. If the shoe fits may I suggest wearing it? After all is their a point in being angry about something you can’t change or you don’t find offense to because it directly affects you?

Tonight my housemate and I sat together and watched the movie Sicko (made by Michael Moore). As we sat down to watch it I warned him that usually movies made by Michael Moore make me angry. Not in the violent OMG I just wanna hit something way but in the true blindness of society in regards in injustice one.

In 2001 I was diagnosed with breast cancer, two weeks before my birthday. Living in this great land of America I was able to find a doctor who was willing to treat me. Oh wait, no I didn’t! I was told by doctor after doctor that they wouldn’t treat a male. I was finally referred to the public hospital…The Avon-Grady Comprehensive Breast Clinic. Well I figured that even though it was located at a state hospital it would have excellent treatment since it was primarily private funded. I was right! But the excellent treatment alternatives were not given to men with breast cancer. Why you ask? Simply for the reason that “Avon is a company for women…by women.” They could essentially decide who they were going to treat and not. I was never refused treatment, but I was not given the best treatment possible because of my sex.

In 2003 when I was diagnosed AGAIN with stage 2 Invasive Ductal Carcinoma of the left breast there wasn’t any change. I was offered 26 rounds of cytoxin and tamoxifen (both chemo drugs) and a 32% chance of living beyond my 5 year plan. I wasn’t able to complete my chemo therapy.

It’s a total shame that the poor and disabled are not treated as citizens but like a burden on the state in which they live. It’s inconceivable as an American that they only reason some of us including loved ones die it’s because they hold American citizenship! How can we as a society sleep at nights when our next door neighbors have to sell their house and relocate because they filed bankruptcy due to medical expenses? How can we as a society sleep at night when we there are people who are not getting healthy everyday but simply growing accustomed to being sick? What is it going to take for us to wake up and realize that the vast majority of Americans are a car wreck, work injury, or fluke accident away from not only being homeless but in the hands of a doctor that you hope is sympathetic and caring enough to treat you after your insurance company drops you simply because you got the flu one too many times. As an American it is your GIVEN RIGHT to have LIFE, LIBERTY, and THE PURSUIT OF HAPPINESS. Those are the ONLY 3 things listed an inalienable rights! Unless I got something wrong in order to have life you must have health.

Want to guess which American considered 3rd world country has socialized medicine? No, it’s not some far off distant land in fact it’s only 90 miles from the southern most part of United States. You guessed it…Cuba! Even with all of the gang wars and drugs on average Cubans live longer than Americans. Not only them though. Let’s not forget about Canadians, French, and ask much as I hate to admit it the British. At the lower end of life expectancy Canadians will live, again on average, 10 years longer than most Americans.

Since December 2001 I have somehow managed to accumulate over 1.23 MILLION dollars in medical debt that was reported to all 3 major credit bureaus. That covers 2 rounds of cancer, advanced HIV disease and subsequently AIDS. Shouldn’t I have been focused more on recovering from these illnesses (assuming I got the proper medical treatment) than trying to set up a payment plan upon discharge from a hospital? Tony Benn once said “If you can find money to kill people you can find money to help people.” We truly live in a world of me…not in a world of WE. With as many Christians the U.S. has perhaps one of them can explain it to me.

Our government is smart though. They have realized that people in debt are hopeless and hopeless people don’t vote. If they can keep the citizens poor, hopeless, demoralized, pessimistic and frightened they can control them. Why on Earth would they want to do that for? Aren’t our legislators just looking after us? No, because they know that an educated, healthy, and confident nation is harder to govern. Even though the working class is responsible for creating wealth the sad thing is only 1% of the worlds population are the only ones getting to enjoy it. It makes me sick that as Americans we work hard, slave away and some CEO on a boat in a Grease port is the one lapping it up.

As the richest country in the world health should not be given on the basis of cash but on the basis of need. Often times we hear that HIV/AIDS is not a death sentence anymore. However, for the Americans who cannot afford the astronomical expense of monthly antiretrovirals it is. In America someone dies from AIDS related complications every 12 seconds. We survive only if we can receive treatment based on pay not on the basis of need. I find it simply amazing that someone living in communist Cuba doesn’t have to feel that but I a citizen of the Democratic United States of America does. Don’t even think about Social Security because despite their cute slogan, “For the times that count…count on Social Security”, I waited a blistering 38 months to receive a judgment in my favor and an additional month beyond that for my FIRST benefit check. They did not hesitate in telling me that they would be re-evaluating my claim in 3 years because they think my condition could improve and I cured of my illness. Is their a cure for AIDS that I am not aware of?

One more interesting fact from the movie is the following…In 1999 the United States asked Norway for the extradition rights to a U.S. citizen because he fled the country. The Norwegian Supreme Court ruled they would not extradite him because the vast majority of US facilities DID NOT meet the LOWEST humanitarian standards. WOW!

Most of the soapbox points came from the movie Sicko and Labour Party member Tony Benn. The closing thought comes from me though. Healthcare should not be a luxury for the privileged but a given right simply because you and I are living, breathing human being.