The Long Red Road – A minute of Gratitude

It was 2012 when I was too sick to even get out of my bed. My body constantly ached, my vision was going, and I was scared to death, literally. I saw doctor, after doctor, proud volunteers that looked over all of the different conditions, to no avail.

I was living in a motel, out of work, and poor as dirt. I had no money for doctors; I barely had money enough to pay for the room I was in. Test after test, until it became clear that I was sick with either some form of cancer, or it was AIDS.

I couldn’t find free testing. It may have been that I couldn’t see a computer screen completely, or it may have been my debilitating condition, who knows. I finally got a ride to The Center, in Orlando Florida from my aunt.

In less than 15 minutes I had my answer. I had HIV and I was suffering from AIDS. Not a complete surprise but I felt the world collapse. My partner had HIV too, and I was the one who gave it to him. I put a gun to his head, and pulled the trigger. I was less than anything, and I just knew this was it. It was the end.

Two weeks later, I believe as I just don’t remember the passing of time, a gentle nurse showed up to my door with my confirmatory testing results. She handed me the results and then a tiny little slip of paper with a phone number on it. That was the day my whole life changed. Somehow, some way, help found me. I promptly called the number, was advised to gather some bits of information and to report to the County Health Department.

When I walked in, I was rushed into an office. A lady named Chanel sat down at her desk, collected my information and got to work. She advised me this would not be easy, that I had work ahead of me. I needed to see a Doctor at a place called Comprehensive Health Care. Because I had no transportation she arranged a van to come and get us.

I walked into the office, now not as terrified as I was confused. I had no clue what was going to happen, just that someone was going to look me over, and a process was beginning.

I was assigned a nurse, Jessica. I joked that I had never met Jessica Rabbit in person before, which was totally inappropriate but well received. She was the most lovely, understanding, wonderful woman I had ever met. Her compassion and her dedication were overwhelming. I could do nothing but be in awe of her movements, how she was so thorough. It was awe inspiring.

She left the room for a moment to call the Doctor in. A tall black man walked in. He said his name was Dr. Ronald Cathcart. If Jessica was compassionate and efficient, this man was a God of Doctors. He had no problem putting his hands on me to physic ally diagnose every opportunistic dilemma I had going on. He ordered specialists, further testing, and follow ups. Somehow I felt like family to these new people.

A blood test and urinalysis came next. With the speed of light, the team worked out patient care assistance to get me on a strangely named drug called Stribld. I was put on some antibiotics, antifungal, and he explained the most important advice I have ever been given.

I was going to survive, only if I took these meds exactly as he told me to. “Once a day, every day” he said was the mantra of my life now. I tried to put the fear in a box, now I had this team, this new family. I had to make this man happy, to make Jessica proud.

That was the beginning of the “Long Red Road”.

Fast forward, six years. That mantra, that team, from my case manager Chanel, all the way through eye doctors, and psychologists and psychiatrists, and dermatologists, I have now been “undetectable” for 5 years. I lost the sight from my right eye, but I pressed on. I felt the urge to be a light in this dark place. I wasn’t just HIV positive, I was just POSITIVE. Screw HIV! Not today Satan, you can’t have me! I’m stronger, I’ll show you!

And boy did I. Look at me now! I am here, telling you this story. I didn’t die, I THRIVED.

Jessica moved on to be the Deputy Director of my clinic. I served as the Community Action Board of said clinics Secretary and I started this blog. I wasn’t going to just beat this; I was going to show the world how to beat it.

I spent the last 5 years of my life on disability, thinking I would never be able to work again. The things I loved about my life were just out of reach. Or so I was lead to believe.

Disability ended, and life began again. I chose the hardest path I could imagine; I would once again hold the certification to be a Certified Nursing Assistant. I would do the impossible and get not just my life back, but my whole life back. I wasn’t taken too seriously at first. Just how was I to prove to the world I was capable of caring for others in a skilled nursing environment? I was half blind, and diseased. Who would take me seriously?

It turns out it only had to be me. I worked hard, studied late into the nights, and drank so much coffee that I know I almost became a coffee bean.

I challenged the CNA Board test, and I passed. I PASSED! I was not only healthy, and successful, but in my hot little hand I had that all important certification that proved beyond anyone’s doubts, I was CERTIFIED!

I sent out my resume, with work references that just didn’t exist anymore. I was interviewed, I was like a magician. I moved swiftly, answered all their detailed questions. I impressed them. I now have the job, and not just any job, my dream job! I was what I always wanted to be again!

I write this to you, my lovelies, to encourage you. It took an army of people, probably a half a million dollars, and real hard work. I over came this. I frantically called Jessica, now a sister in love. I had to pour out my gratitude! I called Chanel, she is a miracle worker, and she definitely needed to be thanked. She can check off the box in my care plan that I am a professional now.

I have to thank every one of you, even you who I have never met, who just found me today. THANK YOU and welcome to my little family. It’s a safe place here, we all love you! I love you! Stay here with me, I’ll hold you up, no matter how you came in, when you leave you will be more. That is my dedication to you, that is my promise!

So now, on the Long Red Road we will walk together. I will keep on sharing my life with you, and I hope you share yours with me, and others. It truly takes a village! An army of love. We will overcome this together and as much as I have seen success, I share mine with you.

Thank you for reading this. I hope you will read more, and I know you will be ok.

“Once a day, Every day”, each step “Positive”. Together down the “Long Red Road”.

As always,

In Unconditional Love,

You’re Friend David.

U=U and PrEP – The Rest Of The Message

Hello my Lovelies,
I want to thank my readers and followers that supported my presentation on the new science that having an undetectable HIV status prevents the transmission of the virus to your sexual partners. It is a stigma busting, sexually freeing message, and is a long time in coming. We can be assured to live a normal lifespan, and have normal relationships. We are no longer a threat.
Thank you PreventionAccess.org and the CDC for your acceptance, and advocacy, of the message that Undetectable means Uninfectious. It is liberating, and the best news we have heard to date.
However this message and the advent of PrEP (Pre-exposure Prophylaxis) have a definite side effect that as advocates, we need to address immediately. As our youth grow up in a world where HIV is a treatable, survivable chronic disease, and now there is a drug to prevent the acquisition of the virus, people are using the tools of prevention less, and STI rates all over the world are on the increase.
Syphilis, gonorrhea, Chlamydia, and other preventable STIs have been on a steady uptick for years now. We know that treatment of HIV as prevention is working, and the rates of HIV are coming down, with more people finding affordable treatment and access to testing. The pill that prevents HIV is working and has represented a strong portion of the decline of HIV acquisition. But other STIs are on the rise. Add to the mix, multi-drug resistant bacterium like super gonorrhea, and the message becomes more urgent.
What have we been doing wrong? What can we do, now, that will change this?
First, I believe we need to get back to the basics. If you are going to be sexually active, you need to have regular STI examinations. Most people who are HIV positive are being tested along with the tests needed to track the progress of treatment. We need to advise our communities, our friends, that regular STI testing is a must. Most STIs are very treatable, and if untreated can cause a whole host of complications, including the heightened risk of HIV. As with any infection, early diagnosis promotes better outcomes in treatment. The message is: Use condoms, and get tested.
Second, where we can, we need to make available to anyone who needs them, the tools to have safer sex. Condoms, both male and female should be available free from our local health departments and our dedicated STI clinics. Making prophylaxis freely available has been shown to reduce STI infection, and provides a discreet and totally free way to obtain protection.
I spoke to a friend about this topic recently and he told me a story about a young family member who confided in him that they wanted to have sex. This person was only 16. So, when my friend heard this, he immediately loaded the kid up into his car and went directly to the local health department. He told his family member to walk up to the desk and ask for condoms, as they have kits available for free. The receptionist behind the desk looked impressed, and handed the kid a full paper bag. It not only had condoms, but spermicide, lubrication, and also a female kit which had female condoms. He spent the next three hours explaining how to use the condoms, what the lubrication helps to do, and how a female condom is used as well. It might have been a little embarrassing to the kid, but since the kid has grown into a man, and the man is practicing safer sex. He knows the importance of his health.
As a person who is highly allergic to latex, I know it is a very big concern of mine, that my partners are all tested, and that I am tested, as using a condom for me, is literally hell. I cannot have satisfying sex using a rubber, and I have to be aware that I am at risk. I get tested every six months for everything, and when I am dating, I maintain that it is a deal breaker if my partners won’t test regularly too. Don’t get me started on the stigma that I endure as a man who finds condoms just not conducive to enjoyment. I have heard it all, but I maintain my resolve.
There is no shame in knowing your status. Just as you know your HIV status, you should know your STI status. This is a must do, not a maybe do. Not just for yourself, but for those who you know and love.
Undetectable means Untransmittable for HIV, but safe sex and regular testing will ensure a long, satisfying sex life. You may just save a life. Never give up the fight.
For local (Brevard County, Florida) HIV and STI testing please visit the following resources:
Project Response INC.
Project Response provides a clinic where you can be tested for HIV, and STDs. STD testing is 50$ and includes syphilis, gonorrhea, Chlamydia, testing and counseling. It also provides counseling and access to Prep, PEP, and HIV and STD treatment. Condoms are available freely and anonymously.
747 South Apollo Boulevard
Melbourne, Florida 32901
321.372.5003
https://projectresponse.org/prttc/

The State of Florida Department of Health
The Health Department offers free condoms, HIV and STD testing at their Melbourne, Viera, and Titusvile locations for a fee. The fees are subject to the testing you require, a full work up is around 80$ with a $4 fee for each visit. The Health Department can refer low income individuals to their Community Health section for Ryan White and ADAP (AIDS Drug Assistance Program) if necessary.

Florida Department of Health contacts:
Titusville, and Viera please call: 321-637-7300
Office hours are 8a-4pm and you will need to set an appointment.

Melbourne call: 321-726-2909
Office hours are 8a-4pm and you will need to set an appointment.

Online resources for the prevention, and education of STDs and HIV:

The CDC’s online resources on STD education and prevention:
https://www.cdc.gov/std/

The Florida State Health Department online STD info:
http://brevard.floridahealth.gov/programs-and-services/infectious-disease-services/std/index.html

The Mayo Clinic: Sexually transmitted disease (STD) symptoms
https://www.mayoclinic.org/diseases-conditions/sexually-transmitted-diseases-stds/in-depth/std-symptoms/art-20047081

Always remember, I am your friend. You may reach out to me at any time to talk about your health, and to hear some great advice. We have come so far with HIV; it is now time to take the fight to STI infection and to further promote healthy and satisfying sexual relations.

We are the Undetectable Generation; let us strive to be the STD Free generation! We can do it!

As always in Unconditional Love,
You’re Friend David.

The Thing We Call “Life”: “You don’t need to reinvent the wheel.” – A Comeback

Good Day my Lovlies, I have missed you all so…..

I felt the need to explain my absence to you for many months now. I know that I needed to step away for a while to get my bearings with my own experience, as I have been presented with quite a few life lessons, learned in very hard ways.

Essentially we are nothing but molecules caught in the ebb and flow of the sea of life. Unseen forces, tides, move us closer and then farther away from our intended reality. The tides take us beyond our limitations and then back to the lows of lack of intention.

When we are farther from our intentions it is easy to try to “reinvent the wheel” when nothing is really broken. It is a trap, that can keep you silent and once you try, you find yourself pushed back to your intentions. It’s a cycle, and it is immutable.

Riding the tides is the goal of every human learning to be content. And we all can be content whether the tide is low or the tide is high. But here’s the rub, we don’t like it both ways. We become jaded to the highs and the lows. After all, the human organism strives for homeostasis – the state of equilibrium. Life is not homeostatic. It is a flow; it can be a trickle or a deluge.

So when yet another seemingly incurable disorder popped into my existence I lost my voice for a while.

So as you all know I am striving to be a nursing professional. I have been tested and while I passed the written exam, I failed the clinical exam. I literally had no time to study the skills and on top of that I choked. My mind went absolutely black as the test started, and this may have been a real blow to my ego, if it weren’t for the actual test result. I passed all but one skill, and that was because of my mental state.

The tide kept flowing out. My aid job, that was so wonderfully fulfilling took a turn. My patient fell on my only day away from her, and ended up needing inpatient therapy. She is declining, and in her state she may never come back to her home. It is time to think about her safety and her happiness, it may be time to think about longer term care. This is sad but it is the progression of dementia. I always knew these days would come.

And the hits keep on coming. My mother has been diagnosed with stage three lung cancer, and over the past few months, while keeping her secret, I have been trying to nurse her through the gauntlet of Medicaid, radiation and chemotherapy, and disability. She is a very private person so I was not allowed to talk about what I was feeling. I will leave this subject this way… I have already fought a not so incurable disease, I got this.

So the fact I’ve been silent does not mean I’ve been static. My HIV has taken a backseat, finally, to everything else in my life. It almost seems like a topic not even worth talking about when put back to back with all the other things I have on my plate.

But HIV cannot be a topic that we stop fighting for. Cancer cannot be a topic we cannot be complacent about. With the advances in medicine and the research moving toward a cure for all illnesses we must press on, and keep the focus.

So for my comeback statement I have but one thing to say:

“We don’t need to reinvent the wheel. Cancer sucks, and AIDS blows. And we can cure them both!”

Stay tuned for more.

In Unconditional Love,

Your Friend David

 

Disclosure – Your Friend David

(Although this story is based on a real situation, the exact details and identifying information have been carefully removed. This story is to raise awareness on a particular situation affecting PLWHIV, and has no base in absolute truth.)

 

He’s been out of work for a while now. It’s been a long battle with AIDS, then the nerve pain, but now it’s the stark reality that his disability checks are ending. He needs income now.

And so he begins to place application after application in. The process is so much different now after the time he spent disabled. They want so much more, and they want it online. It’s a cold process of keywords and no call backs. No one seems to take his situation well.

Then one call comes back. It’s a minimum wage gig but anything is better than nothing. He sets up the interview, and prepares to snag this job. It’s in the bag, he interviews very well.

The interview comes and goes, he is honest about his physical limitations, and that he doesn’t feel that any special accommodation should need to be made, no mention of his HIV status has been asked for, as that is not important in this job. There is zero risk of transmission doing any part of this particular job.

He waits and then gets to on boarding for the job. There is paperwork and more paper work, but then something makes his hair stand up on his neck. They require him to explain his medical condition in depth for the last 7 years. They want to know diagnoses, procedures, hospitalizations. This doesn’t seem right but he needs this job.

He tells the HR representative of his reservations, and it is explained that it is a condition of employment. Reluctantly he submits, and gives them the info. What could it hurt, they have confidence in him and he feels that it should be returned in kind.

 

Two days into working and he is summarily fired. At will. He wonders why and now feels that his disclosure may have had a role in this. He is scared and at a loss. What should he do?

There are laws that protect from this kind of discrimination. The Americans with Disabilities Act protects workers from work place discrimination based on a medical condition, and requires that if an employer hires a person with a known condition, they must accommodate reasonably.

When you are asked about your medical history, if the job doesn’t warrant your disclosure you should politely refuse, and if it is a condition of employment you should ask how your information will be used, stored, and protected. This is a basic right.

Now there may be jobs where the risk of transmission exists and your employer may need to know your status, but that is rare, and in most cases even with a viral load, you are unlikely to expose anyone to it. In my case I want to be a CNA and they will need to know that my viral load is undetectable, and my immune system is back so I won’t be a liability in nursing. But that is sometimes a risky situation, and is expected. If there is no risk in your job, you do not have to disclose. It’s that simple.

Look up your local Center for Independent Living, or ADA representative if you feel discriminated against. Remember that most jobs like this will be “at will” and they have the right then to fire you for no cause whatsoever. They don’t have the right to fire you for a medical condition without reasonable accommodation. You need to report this to the EEOC as well.

Stigma should never be allowed to take anything from you. You have the right to live and to be a functional part of society. Protect that right.

 

In Unconditional Love,

Your Friend David

I am the Light – The return of Your Friend David

I really want to write to you. It seems so difficult though, as these days I’m in a very dark place. I never want to infect my work with a lot of darkness because I believe in the power of good news and good thoughts. But I am very much in a dark, dark place.

This place is familiar. I have been here before, on the edge of life where every decision is a real affirming thing. Waking up and getting out of bed, the need to supply the body food and to try to be as human as possible, but you know you can’t really get it done today. Nope, the body and the mind just don’t have it.

And let’s make this story even murkier, the darkness has a friend.

He is living here with his dad who needs help himself. He is an addict and a liar. He is a thief and a thug and he is really not wanted here but he persists. He somehow ends up pissing everyone off every day. It’s on its way out but it’s going to destroy everything in its path on its way out.

That is my life on the surface. That is just what is going on physically. I am bent mentally as well.

I have been declared able to work and since have been following my dream to get my Certified Nursing Certificate back and to work as a home health aide, private duty. In the mean time I need cash so I apply at a few places and I take a job.

When I on boarded they asked for way too much medical information for my liking and that led to a confrontation that was demeaning and vile. I was fired because of my HIV status and it was a punch in my gut. How could an advocate like me let an entity disgrace me like that? What do I do about it?

My personality disorder has been teetering on destruction and so I have not been feeling the writing thing and I certainly didn’t feel like I could help anyone, now that I have been violated that way.

I believe I need you more now than I have ever needed you but it is so hard to talk to you about all of this. I need you, and I will reach out for you. I need to be able to say what I feel again, and to be open with you about my journey.

As of March I am still undetectable, my CD4 count is 450, and I am at my target weight of 155lbs. I am so happy to be healthy and that I have access to the best team of medical professionals. I am healthy in the body and I am strong.

My mother is very ill. Cancer is a darkness that lingers and attacks at 3am. It starts to erode the hope and light. She knows now that she needs to change some things she never thought she’d have to. I am here, I will be her light.

I am well placed to be a CNA; I have the opportunity to care for a private duty client, and to be here to care for my mother. This darkness can’t kill all the light. I will be the light.

I will be the light in this darkness. But it is hard to blog to you about this. It is hard to feel all of this and talk to you about it. I am the light.

I am the light.

Regarding the issue of gun violence and sensible gun control legislation: An Official notice from Your Friend David and The Crimson Lifeline

Official Notice from The Crimson Lifeline

Regarding the issue of gun violence and sensible gun control legislation:

 

I have been trying to stay out of politics as my page and my blog is for everyone. It will remain for everyone, but I cannot continue to watch innocent life be so violently taken. I cannot stand and see a shooting every day and not say words about how I feel.

 

How do I feel? I am pissed off! I am hot mad and I can’t stay quiet any longer so if you are offended and will not listen to this, I will not apologize, my blog, and my page is not for you.

I stand firm in support of the Second Amendment but I believe that the original intent is being absconded by special interest and by the NRA.

The Crimson Lifeline is officially and with all of my voice, fervently supporting the right of these young adults, men and women of all ages and races, of all religions and all makes and models, to resist the NRA and to march for their right to be safe. We all have a voice and I will be using mine now!

I have seen too many souls be taken by gun violence. I have watched terror reign and flourish under poor legislation and inaction. How many more souls must we watch die? How many times can we say “They are in our prayers” but never act. This is the end. No more silence. No more fear.

I fight stigma every day, but my voice now fights back against the representatives that have sat on their hands and pandered to the NRA for far too long.

Students who have chosen to take a stand and walk out have the absolute right to their First Amendment right to peaceably protest and walk out of their schools. They are marching as I type this in numbers in the millions. They are registering to vote, and they are taking a stand.

The Crimson Lifeline will not be on the wrong side of history. I and my page will now stand for the right of children to be safe in their schools. I and my page will stand for the right of innocent Americans to be safe at their churches and places of entertainment. Terror will never make my voice silent and my page will never let the horror to stop the belief.

Sensible gun control is not a suggestion, it is a DEMAND.

Contact your local representatives and senators. Contact them and remind them that we are voters, and proud Americans who are taking a stand. Demand the return of all funds that the NRA has funneled into their coffers for elections. Demand legislation, true and effective legislation that preserves the sovereign right of the people to LIFE LIBERTY and THE PERSUIT OF HAPPINESS.

We demand that the right to be safe and protected be honored and lifted up.

You can text 50409 with the word “NRA” to find out who your representatives and your senators are, and how much the NRA has donated in support or in opposition to their campaigns. Once you know who they are then call their offices. Then hit them up on Facebook directly. Facebook has added a feature to add to your post the option to contact them and to allow your followers to contact them. Tweet them at their accounts that you will be voting and they need to DO SOMETHING.

Words mean little. Actions speak louder. DEMAND ACTION.

This is The Crimson Lifeline’s stance on this issue. Those who take issue with it may leave. I understand. I will not miss you. You will be on the wrong side of history and we will never again allow this to happen.

I support the MARCH FOR OUR LIVES and I hope you will register and vote your conscience.

I will be.

With love, honor, respect, and dignity for all Americans,

WE STAND WITH EMMA. WE STAND WITH PARKWAY. WE STAND AGAINST THE NRA. WE STAND FOR PEACE. WE WILL NOT BE SILENT. WE WILL ACT AND WE WILL BE HEARD!

WE THE PEOPLE OF THE UNITED STATES OF AMERICA DEMAND CHANGE!

Your Friend David

I am HIV EQUAL – Your Friend David

We all have a status. In this binary screwed up world we have been told that we are gay or straight, republican or democrat, dirty or clean, positive or negative. It’s the way the world seems to want to keep our voices in check.

You won’t fit in if you aren’t one or the other. You will never be clean if you’re dirty. If you are positive for HIV you can’t be clean. It’s disgusting.
Shortly after my diagnoses of HIV I felt that stigma in spades. I lost friends, and family. My whole life revolved around the notion I was less now. I’d never have a loving relationship again, not with anyone who wasn’t as dirty as I am.

I bought into it too. I let my friends go; I let my family say their ugly statements. I fully believed I was never going to be anything but a diseased outcast. That is what the world told me. That is what I believed.

I woke up one morning in a panic attack. I was gasping for air, and for sanity. I felt all alone and negative about everyone and everything until I had the epiphany. I was not HIV positive, I was just positive. I am a positive force in this world. I will not let HIV define me; I will define it to me. I took control.
From there I spread the news. Do not fear a positive life, even though they will tell you their uneducated truth. It’s not your truth, you know better.

I became an activist and advocate because of this.

I just gave a presentation on what it means to have an undetectable viral load and how that is empowering and freeing. You cannot transmit the virus if you are in good care, and your viral load is undetectable. U=U became my mantra. And it has served me well.

But I want more. I want to be the man I was. How can I learn to live in a different way, and then I ran across this message online. It was the very thing I wanted to know and hear. We all have a status. We are HIV equal.

What is HIV Equal and what does it mean?
“HIV Equal is an international multimedia campaign that aims to end HIV stigma and promote HIV testing by creating a social art movement that changes the way people think about HIV and which reopens the national dialogue about HIV.” (http://www.hivequal.org/campaign)

I saw these folks taking back their life all that HIV took. They are saying to HIV “You don’t get to define me anymore.” We are no less important and loved than anyone else. I can love, and be loved. I can live and have a full life. I can finally let go of the fear.
We are all HIV Equal. Equal in our love, our pain, and our lives.
“HIV Equal” is really an art campaign that aims to change the way we discuss the issues related to HIV. New science and better medicines make PLWHIV no different from a person with diabetes, or high blood pressure. We can stay in treatment, and take care of our bodies, and be just like anyone else. No one has to even know what your status is. Your status is EQUAL.
I am no less than you. In your pain, I see my own. In your love, I see my love. In your equality, I see equality for myself. I am a lot of things, but I am not binary. I don’t even know if I am truly even gay if you really need to know. I am human, and I deserve respect just as you do.

So today choose to be a force to end the stigma and lets all change the dialogue.

We are the Undetectable Generation, and we are HIV Equal.

Check out http://www.hivequal.org/ and add your pics. We are more than HIV!

Your Friend David
And I am HIV EQUAL!