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

 

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

National Women and Girls HIV Awareness Day – Your Friend David

National Women and Girls HIV/AIDS Awareness Day is a nationwide event to promote HIV awareness, prevention, testing, and treatment to lessen the burden of HIV in women and girls.

 

HIV owes a huge debt to us. Especially women who live with HIV.

 

Your sexuality has been hijacked. You already are limited access to birth control, and to legal abortion. You have been used as a sexual being, but never allowed to choose it for yourself. Men of power in the entire world are being ousted as predators, and rapists. We see it everywhere, but HIV was the most insidious.

HIV didn’t steal anything that wasn’t already stolen. It stole your ability to feel. Every single time you felt something from a person, all of a sudden the fear that you could somehow put them in danger, or you could be in danger yourself crept in. It kept you from loving. It kept you from feeling.

On National Women’s and Girls HIV Awareness Day, I call you to take your sexuality back. It is now time to understand that if you take control you can be a force for change. You can prevent HIV.

Get tested, and know your status. This is key. Once you know you can get into care, and once you are in care and it is effective you are at no risk of transmission. You can prevent the spread just by knowing your status.

Stay in care. By following your doctor’s orders and maintaining an undetectable viral load, you are preventing the spread of HIV and protecting your loved one. Staying in care ensures you have the right to a full sexual life, and you are in control.

Spread the word. Take your sisters to get tested. Help them to stay in care. Be there for their ups and their downs. HIV is still a scary thing, so getting involved in support groups, or online groups will help you to connect to others. You are not alone, and you are your sister’s keeper.

We are the Undetectable Generation! We will defeat HIV, one sister at a time.
To all my Ladies! Take back your Sex. Take back your Love.

 
With Unconditional Love,
Your Friend David

A pretty bad tumble – The Seven Stages of Dementia

She hurried me out that day. She had things she wanted to do, an outing with her sorority sisters and dinner out. They would be there a little later.

All day seemed off though. After a serious call from her daughter she just seemed off. She had a time with her medicines and then she wanted to sit in her chair a while before a shower. She never sits in the chair before her shower.

I remind her of her outing, and that cheers her up. She becomes excited and lucid again. She slips off to the shower, and I run around like a mad man straightening the house out. Paper everywhere, little notes, and store flyers to sort and make sense of. I am so happy she’s back if only for now.

I set her pill box up like normal, and she emerges from her room, clean and fresh. She begins to carry on about her sisters and how she loves to be social and wants to never lose that. I promise to help her keep it with everything I know. Shoes now on, she wants to watch her show before she needs to go.

My time is done, and its hurry hurry out. She wants to get herself together for her girls. I am joyful feeling that this is the thing that brings her back to us. Independence through society.

Later that night I get a call. She has taken a pretty bad tumble. I need to be with her overnight and through the next day. I pack a bag, and I pull myself together.

I’m scared. I bet so is she. It’s going to be a long night.

My poor Mary.

 

The Seven Stages of Dementia:

From: https://www.dementia.org/stages-of-dementia

“By identifying the earliest stages of dementia as they occur, you may be able to seek medical treatment quickly and delay the onset of later stages. Though most cases of dementia are progressive, some may be reversible, and sometimes dementia-like conditions may be caused by treatable underlying deficiencies or illnesses. The more aware you are of these stages, the quicker you will be able to react and seek help, either for yourself or for a loved one.”

 

There are seven distinct stages of dementia. They are progressive and do not happen all at once. Most cases of dementia are treatable, but are not curable. If we can identify the people who are in the earliest stages of dementia, we have a better chance of slowing the progression, and extending life spans.

The Seven Stages of Dementia are:

Stage 1: No Cognitive Decline

Also known as “Normal Functioning Stage” Patient shows no cognitive impairment at this stage. Stages 1-3 are often known as “Pre-Dementia”.

 

Stage 2: Age Associated Memory Impairment

This stage is where there are occasional lapses of memory. These lapses could be mistaken as normal age related cognitive decline. Most often patients forget where they left their keys, or forgetting names that were once very familiar. Very mild cognitive decline, resembling normal age related decline.

 

Stage 3: Mild Cognitive Impairment

Clear cognitive problems begin to manifest in stage 3. A few signs of stage 3 dementia include:  Getting lost easily, noticeably poor performance at work, forgetting the names of family members and close friends, Difficulty retaining information read in a book or passage, Losing or misplacing important objects, and Difficulty concentrating.

Anxiety and frustration are common at this stage. Patients should seek a medical consultation at this stage.

 

Stage 4: Mild Dementia

At this stage the patent will start to become withdrawn and show changes in personality and mood. The patient may be in denial, as this is very common in stage 4.

Behaviors like decreased knowledge of current and/or recent events, difficulty remembering things about one’s personal history, decreased ability to handle finances, arrange travel plans, etc., disorientation, difficulty recognizing faces and people are common.

In stage 4 patients have no problem remembering familiar faces and familiar places. The patent may begin to withdraw from situations that take them into unfamiliar experiences.

 

Stage 5: Moderate Dementia

At this stage the patent may need help with activities of daily living. The main sign for stage 5 dementia is the inability to remember major details such as the name of a close family member or a home address. Patients may become disoriented to time and place, and forget basic information about themselves like their telephone number.

At this stage patents usually do not need help with elimination or eating and may still remember their own names and close relatives, though the cognitive decline is severe.

 

Stage 6: Moderately Severe Dementia

At this stage patients begin to forget close relatives, caregivers and familiar faces. Commonly, they can be unaware of their surroundings, cannot recall recent events, and can have skewed memories of their personal past.

Caregivers and loved ones should watch for: Delusional behavior, obsessive behavior and symptoms, anxiety, aggression, and agitation, and loss of willpower. Patients will wander and have problems sleeping. Patients will now need full time care.

 

Stage 7: Severe Dementia

At this stage the brain seems to lose connection to the body. The patient will lose the ability to speak or verbally communicate. The patient will need help walking, eating and elimination. The patient needs full time qualified nursing care. This stage is commonly the most painful of the stages as the patient slowly withdraws completely.

 

She will be ok. And so will I.

Is it time to talk about a night shift? Maybe some assistive devices? I think once she visits her primary care physician we will find out.

Until then, Mary, you got arm candy girl!