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.

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

 

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!

 

So high he forgot his coffee…

I get up naturally at about 430am every morning. It’s something I’ve done for ages since my stint in the military. I try to use the quiet time to meditate, blog, and to prepave my day. It’s helpful for me.

But this morning was a little different. As you have heard I live between two active addicts. I have to count my medications twice daily to make sure that I’m not enabling them just by having my medications in the house. I hide them in places, never in the same place twice.

This morning the boy is awake. I call him a boy because he’s never really acted like a man. He is so flipping lit on whatever he is on that I’m sure that he’s on his way to a really bad case of withdrawal once the drugs wear off.

In the meantime, he is attempting to do laundry. My mother’s clothing was still in the dryer, she had a long week so she is sleeping in. He almost went back to deliver them to her. Well, I think I just saved his life because if you wake that beast, she will rip your throat out. And I would let her.

I know it’s hard to quit, but he’s not even trying. I am daily scrutinized for my legal medications, that I take as prescribed, but this foolishness is tolerated for some ungodly reason. It’s a real bummer to have to deal with my own recovery and watch another say he’s in treatment, all the while abusing it.

I have been off my drug of choice for decades now. I fully feel recovered; I don’t need that kind of life. Some people just don’t know how to cope without hiding in a drug induced stupor.

He left the meal my mother cooked for him in the microwave again. Undoubtedly, he forgot that he heated it up so it went into the trash. He was working on the back door and got about half way through; I doubt it will be done today. He made himself a coffee in the Keurig but has now forgotten it’s there. I’m taking bets on how long it takes him to remember he did that.

I really have a hard time living here because I am the black sheep. I am the problem somehow.
Well fuck that.
I am not actively high, and if I need help I know where my local NA is and who my sponsor is. I’ll get help. He goes to a suboxone clinic and he abuses that too. I don’t see how that kind of treatment helps. Substitution therapy is bull.

The way out is to admit you have a problem that you have no control over. You cannot manage your life and you need help, not from man, but from your higher power. Man will fail you, God never fails. I know this, and I live by it. One day at a time.

So now the house is waking up and I am about to hide because I want nothing to do with the outcome of this. I have warned my grandfather gently that there is a big problem, but he won’t do anything to help at all. I’ll get blamed, or it will be me that is the problem if I say anything more. So I am here saying it to you.

I don’t know how much more I can take of this nonsense. It’s been an hour since he made that cup of coffee, and it’s still sitting there. I believe it won’t be drunk at all. I put a full hundred on it. I’ll be rich by noon.

Get help, find a local NA/AA meeting, see a qualified psychologist and just take the first step. It’s the hardest step but you can do it. I did. You will feel pain, but that is what being human means. If you don’t feel pain you’re not really alive. Teach your brain to find ways to get that happy chemical going without your substance. It takes time and hard work but you can do it.

If you are in danger, and you need help I am always here. Search me out, I’ll talk you through it. We can go together into recovery, and you will be whole again soon. But it takes that first step. One baby step.

In continual recovery and unconditional love,
Your Friend David

Morning Musings – Fret not, all is well.

As most of you guys know, I was considered disabled. I won my case a few years back and the check and Medicare were a godsend. I used all of the resources that were offered to me to recover.

I battled my immune system, my body always in pain. I battled my mind, always in the worst places, believing I was worthless. I battled my vision loss and how that made me feel so trapped in a world inside my own head. I dealt with the stigma and the shame.

When the government said they were reviewing my disability I freaked out. If my benefits stopped how was I to pay my bills, or see doctors I needed? Would I end up on the street, homeless again? How would I keep my standard of living that I fought so hard for.

It wasn’t easy to get disability. Many find it impossible, but I had a lot of help. I called a great lawyer and I have a decent case manager who assisted me in compiling the information they needed. I gave up on being able, and I succumbed to the fact I would never be the same again.

HIV, blindness, and bipolar took so much from me. I lost friends, my freedom, my independence. All these damn disorders owe me a debt that almost cant be repaid.

And then on my birthday, I get this big envelope with 15 pages of questions reviewing my disability. I saw my doctors, as I was recommended. They all said “don’t worry, you’ll stay disabled. You will never be better.”

In January, I received the last letter I would receive from Social Security. It said after review, my condition had improved and I was now not disabled. I had three more months of benefits and then no more. I was, to say it bluntly, blown out of my soul.

I have since had to move into a place I am not taken seriously. I live with people who are so much worse off than I am that I have to hide in my dark places so that I don’t feel their misery.

Never ending applications for employment then ensued. I count as of this post over 20 different places I have applied to, and I have had only one response. That is good. I only need one fish to feed me. I don’t eat that much.

Of all places it is McDonalds that seems to be taking me seriously. I have an interview on Monday and I hope that they will see I am totally able now to do anything they need. Hell, I’ll take a cut in the base pay and clean their toilets with a toothbrush if it means a steady paycheck. I am ex-military so I can do anything.

So I put on my smile, that great big beautiful smile, and I press my trousers crisp. I want to look like the sharpest man on the planet. I need this job. I need it to feel worthy, and to feel like I am a productive member of society again.

I do some volunteer work, and I am constantly on here helping people so I always have something joyful to do, but that don’t pay the bills. Money pays the bills, and I need to make some.

I aspire to be recertified as a CNA, and I am working on specializing as much as I can to care for the newly diagnosed HIV patients. I have been there, and I know it takes a lot to stay in care, and to recover. The protocols for success are rigid, but totally worth it.

My viral load has been undetectable for years now, and so I know that I am in no danger of transmitting this virus to anyone else. But to get there took time and patience. It took hard work and love. To be able to type this to you took years of doing things that my doctors laughed at me for.

For instance, video games helped me to strengthen my good eye. Walking up dangerous highways and taking the bus everywhere challenged my fear of the world. I got into some good mental health treatment so my bipolar is managed. My doctor says I am a miracle. I say I am a trooper and a man of steel. I can do anything I put my heart into.

So this morning’s message is, don’t give up. When they say you can’t, and you know you can, then do it. When you feel lonely, there are thousands of lonely people out there, so find one. When you are in need, there are even more then you, who need. Give to them.

Let life pass through the molecular machine that God made you. If you don’t believe in a God, that’s good because nothing I just said above is religious or spiritual. It is the law of life and of living. It’s the sacred law of attraction. Give to the world what you want in return. Prove me wrong!

“Fret not, for it only causes harm.” Put your trust in your higher power and let the work begin. It’s up to you to make your life, so make it joyful. I promise you will reap great rewards.

And in the meantime, I am your friend. I will be here through the ups and the downs. I know you are a beautiful creative force. I’ll believe in you when you can’t believe in yourself.

That’s my job.
Unconditionally loving you,
Your Friend David

Joy Thief – A message from Your Friend David

Hello my lovelies,

Tonight I am not blogging about HIV or dementia. I want to talk about your personal mental health.

I have been around some of the most miserable people. I am kind of worried that I might not find paying work, but I have filled my days with things to do that will improve my chances of landing a great job.

I have appointments and obligations that have been agreed to for months now, and I have the added appointments to see all of my doctors before my insurance runs out and I get switched back to ADAP. I literally have only hours to sleep before I have to get my day started and moving.

And I like it that way. I love filling my world with exciting new adventures, whether I get paid or not. So when I agreed to lighten my mother’s load at work and help her client I jumped at it. It shows I have the ability to be a CNA and could give me a good reference.

But I work for my mother. Never make business deals with family. They always think that you will give them special treatment, or some cut rate discount. We all have to make money, and we all have to keep our promises. I promised to care for her client, she agreed to a payment structure.

Not only does she not keep track of when I am working, but once she paid me it wasn’t what we agreed on. I just let it go, but deep inside I know what my next move is.

I can’t work for any boss who cares so little about their employees as to not keep track of their hours so that they are paid at the rate that was agreed upon. I have never asked anyone to do something for me and agree on a payment plan that I won’t follow through with.

Misery loves company, and I wont be a friend to it. I meditate daily to keep my mind sharp and to clear the frustration of having to watch this. I will be fine. The idea was that all this was temporary anyway.

I want all of you to self care as much as possible. Maybe you are stuck around a negative person and that is now infecting your mood. Meditate and center your being. Take care of your mental health because you are no good to anyone else if you aren’t good to yourself.

Sorry to vent but this is a big blow to me to not be a home health aide right now. I will, if there is some emergency, be more that eager to help, but that will now be between the clients family and me. My mother is using me, but I won’t be used for much longer.

So it’s off to a burger joint, or a greasy spoon to make a little cash on the side to stay comfortable while I wait for the application for CNA testing to run its course. Everybody is hiring in places like McDonalds, and restaurants. It’s coming on spring break too so a lot of places will need temporary help. I am able, and I have the drive.

Never let a miserable soul steal your joy. Instead understand that while you over flow, the thirsty will be jealous. They want what you have. They can’t take it from you so stop giving it away.

 

With Unconditional Joy,

Your Friend David