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Losing Hope

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Losing Hope

I recently experienced two deaths within a week. It was the passing of my dogs, Hope and Parker. I had them since they were puppies and so I was able to create so many memories and experiences with them both. As I write this I fully understand that people may question what does losing a pet have to do with a HIV blog and there may be those who question about writing about the death of a dog. After all it was just a dog and you can always get another one some may say. Hopefully by the end of the blog there will be a greater understanding of how losing a pet has such an emotional impact and its connection to my HIV.                                     

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Hope came first, as a beagle puppy she was spunky and stubborn. In fact, it was telling when we were kicked out of puppy training class as it was either Hope's way, or no way. Parker came the following year from the same breeder, having the same father but different mother. As a total opposite of Hope she was more timid and it took her awhile to find her bark. But when she did, she loved to howl.  Hope could care less about being held whereas Parker demanded the human touch.

I was already was living with HIV and having my pets made a difference. Before they came into my life I was more reckless and sometimes had little regard for my own health. I would miss taking my medication knowing the risk of developing resistance. Of course there were other factors which were promoting my bad health behaviors, but I didn't care. After all it was me against the world.

Something happened when Hope and Parker came into my life. I was now responsible for the well-being of two living lives. It was no longer about me and my actions now affected others. But at the same time, I didn't realize how much I needed them as well. They gave me a reason to go home as I knew on the other side of the door were two beings ready to show me love. I don't think there has been a single day when I turned the key and open the door to grumpy faces. There was always love waiting on the other side. 

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Sometimes when you live with HIV you forget how to love yourself as you feel the disease has made you different, unlovable and unwanted by others. It's that unconditional love, whether it's coming from another person or a pet, that makes you aware of your value. Even when you're sad, pets are aware and want to bring signs of love back in your life. Hope was good at this. As someone who didn't like to be held, she would know when I was down. During those moments she would jump on the couch next to me and lean her full body weight against me with her paws resting on my legs. She just wanted to be close and let me know she was there.

Parker was no slouch neither. She would always put her head against my chest as if to listen to my heart. The heart that had love for them and for life.  Pets can be underestimated on the difference they make in people's lives. Sometimes those with HIV may not have the support of friends and family based on their status. They may have difficulty finding a life partner based on HIV stigma. So a pet may be that emotional string that keeps a person going during those dark times. A pet doesn't care what your HIV status is. They just want to love you. And they give you a reason to love.

Pets fill that empty space and contribute to your well-being. The loss of a pet, compounded with living single with HIV feels you not only with grief, but questions of "what's the point" as often people don't fully embrace the importance your dog or cat, played in your life. Home is not the comforting place you yearn to be, but a reminder of loss. I know for me, after their deaths I did everything to not go home. Sometimes when I made it home I would just stand outside before going in. Preparing myself to walk inside to habits which were no longer there.

I suppose I knew they wouldn't be with me forever and in preparation I started to capture their lives on video and pictures, uploading them to the cloud, where I could pull them open when I wanted to see their faces. There was one picture in particular where Hope wasn't feeling good and looking back it captures the dimness in her eyes. I didn't know at the time it was going to be the very last picture, despite taking her to the vet the next day.

They were now 15 and 14, the maximum age of a beagle. During the previous year we learned Hope had heart failure and Parker was diagnosed with cancer. Even when they were diagnosed, I had hope. It was the same hope I gave myself when I received my own HIV diagnoses. I just knew then that taking care of self along with complying with prescribed medications may not cure the ailment but can give you more time and hope.

This past January, on the 9th to be exact, Hope's little heart stopped beating. She died at home in our arms. Less than a week later on that following Thursday, Parker had developed pneumonia in her lungs and couldn't breathe. I was informed she would suffocate during the night. The choice was made to put her to sleep as my one rule when it came to their lives is that I never wanted to see them suffer for the sake of my own benefit. Of course I wanted one more day but not at their expense. Although it remains hard for me to deal with, in a poetic way they wanted to be together as they were in life. And I find peace in knowing I was there at each instance to say thank you and goodbye.

As I was grieving their loss I stopped taking my HIV medication on a regular basis. My eating habits were starting to worsen with junk food and alcohol. I distanced myself from friends and those who cared for me. I didn't realize I was returning to those bad habits before they came into my life. The grief and depressing of the loss was overwhelming. They say it gets better but also you'll never forget. To get past my grief I had to stop reflecting on their last moments and instead smile at the many memories we shared. Sorta like how I recovered learning about my HIV status where I had to stop focusing on the guilt of how I go it and instead look at the gift of life I have.

I have since returned to taking care of myself as I know it's not only the right thing to do but I couldn't simple throw away all those lessons Hope and Parker gave me in the last 15 years. If I truly wanted to honor their spirit, I had to reflect on the love they gave me.

Believe me there are still moments of grief as it's still raw. It's the learning of new habits as I didn't realize how much my life revolved around them.  It's me learning how to walk into a quiet home. It's the oddity of going to the kitchen and not hearing small paws follow me or eating dinner and having to throw away the scraps instead of waiting beagles. It's the sadness of knowing when I go to bed there's not something curled behind my leg or having to no longer compete for blankets in the bed.

So thank you Hope and Parker for reminding me of the love that exists and for helping me be a better person. You were two bright lights during the darkest moments of my life and the greatest joy I can capture from your passing is that you're both together. I didn't lose Hope or Parker, instead I gain so much love. Good night girls.

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Aundaray on: On the web

Checking In

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I'm pretty sure this scenario will feel familiar to those living with HIV and have regular visit with their doctors. After waiting for what seems forever in the waiting room, you walk into the examination room and wait for your doctor visit. The nurse comes in and checks all your vitals and like a good robot you follow. In some cases, you're steps ahead as before you're asked you open your mouth to get your temperature, pull up your sleeve for your blood pressure and stick out your finger in order for a device to be attached for more readings. Finally the doctor walks in and you do something you've been doing for years. You check in.  

The check in goes like this.

Doctor- How do you feel?

You- Fine.

Doctor- Any pain?

You- No.

Doctor- What meds are you on?

You (thinking to yourself) - Don't you know. You're the one who wrote it out. Isn't it on my records. Don't you remember? Don't you remember me?

And although this conversation runs in your head, what comes out is another single word answer to his question and before you know it you're out the door. You realize the ninety-minutes you spent waiting for the doctor, eighty-five minutes was waiting and only 10 minutes spent checking in with your doctor.

The relationship with your doctor often mirrors relationships we have with others. In the beginning when we're learning about who that person is there's back and forth dialogue of discussions. This engagement provides a look of who that person is. Then out the blue the relationship change and what was once seemed like talking for hours, is now small talk. If we let it our relationship with our primary doctor can become the same. You're no longer having active back and forth discussion but instead you're simply providing yes and no answer to the doctor's questions.

The negatives of having this form of relationship are that you actually may not be receiving the full benefit of care. The window of opportunity to discuss about potential problems is now closed off and alertness of emerging issue goes undiscussed. The pain on your body which you feel is unassociated with your HIV status is not shared because you didn't hear the right questions. Or worse you sense the doctor is pressed for time so you go along with the program and allow yourself to be rushed. Worse, you may assume the doctor only cares about physical ailments and you keep quiet any mental health concerns you have. Not fully aware of how any mental health concerns may have an indirect impact on your HIV health.

Who's to blame? It's easy to point fingers at the doctor because after all they are the doctor. Or blame can be placed on medical insurance companies which places the pressure on doctors to see as many patients during the day as possible. Or the fault can be ours for falling into a passive role and not being the advocate for our own wants and needs.

As someone who had to learn to stop simply checking in with my doctor, these are some tips I've used and offer to others.

1)      Recognize when you're becoming too comfortable

As shared above, when you feel you're simply answering your doctor's questions with yes or no answers, this may be a sign the relationship is becoming stale. Of course there will be some moments when you have nothing to report, but don't let simple check-in be the norm. Remember the early days of when you started to see your doctor and the level of engagement. That should be your norm.

Be prepared with your questions

Before your actual visit have your questions ready to discuss. It may even feel odd to write them down, but at least you'll have them handy in case you forget what you were planning to ask. This also helps if your doctor has limited time to speak with you. It also helps you address what's most important to you.

Don't be passive aggressive

The worst thing to do with your doctor is to create a passive aggressive relationship where you are upset they don't ask you questions and yet you continue to visit them with bringing it up as an issue. No matter how long a relationship you have with your doctor, they can't read your mind so it's up to you to be your own advocate. Only you know your true needs and to get what you want you have to speak up.

 

4)      There are no stupid questions

Sometimes you may feel your question has nothing to do with your HIV status. Sitting with your doctor is the perfect time to bring up any issue. Although they may not be able to personally assist, they should be able to refer you to other medical professionals who can assist you with your concerns.

 

5)      Don't be afraid to fire your doctor

You may feel like you've done everything to have an active relationship with your doctor with no luck. There should be a great concern if the person advising you and your health is not listening to you. Or as shared, you feel they don't make the time to answer your questions. Just like any bad relationship, it may be time to weigh the pros and the cons and evaluate whether you should seek a new provider. This shouldn't be the automatic go to but if you feel there are no other options, perhaps another doctor can assist your needs.


 

 



Aundaray on: On the web

Raw Sex

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The doorbell rang and an excitement went through me. It was three in the morning and although I didn't know his real name, I was anticipating the next hour of physical sex. We talked for a few minutes on the website and both liked each other's picture and that was enough. Only when we stood in the same room did we negotiate our sexual roles for the evening. He asked me if I was into raw sex and I paused before answering. The pause was out of guilt. Yet where was the guilt coming from?  It could have been the idea that having raw sex was looked down on in this sexual generation and especially as a gay man. That this close sexual contact which was embraced in the early days was now demonized. The arrival of HIV was the cause of such a negative feeling and yet how should gay men feel when they prefer the feeling of raw sex?

The disparaging view of unprotected sex came into play during my evening encounter. When he asked if I was into raw sex I didn't know if it was a judgment question and by saying yes, would he lose interest? His response could also be the same if I said no; knowing he only got off on the uninhibited action and didn't want to compromise. That was now the nature of barebacking in the age of AIDS. One had to whisper their admiration as now it was a cloak and dagger spy movie. I took a gamble and told him the truth. Yes, I liked it raw.

My anxiety of him walking out the door and being judged was an unrealized fear as he welcomed this news. I was excited that I found someone who shared the same sentiment I had. His leaving would have added to my feeling of rejection. A feeling I learned to accept as a person living with HIV. Ironically he never asked my status or maybe because we met online in a world where you can be anything, he figured I was positive. Nonetheless it was a conversation I didn't have to make with him, instilling in me an additional excitement of embracing the unknown.

I don't remember when I discovered this fascination with condomless sex. Despite the prevention warnings and the numerous printed posters of people looking like me holding up a condom, the message was falling on deaf ears. I suppose it was knowing I was already positive which attributed to my nonchalant thinking. Even then I knew there were other risks which included the possibility of becoming re-infected along with catching another STD. This was even extended to my porno watching. If the participants wore protection and were acting responsible, it was a turnoff and I would click to watch another video. Perhaps the idea of them caring about their sexual health made me feel guilty as it appeared I didn't care about mine.

Oddly it was knowing my positive HIV status that drew me to the desire of raw sex. This need wasn't immediately apparent as when I initially learned about my status I pushed everyone away. I created this huge barrier with invisible lines no one could cross. I restricted any sense of caring and turned away any advances. No matter what was whispered in my ear, I didn't want anyone to touch me. I deleted all online profiles and closed any access where there was a remote possibility for sex. After all I was diseased. I was spoiled goods. I was the 'other'.

I started to feel empty, unconnected. Lost and lonely as my imagined life of not being touched became a reality. I self-selected myself to live in a bubble with my trapped emotions. I no longer experienced a person's touch involving sex, not even a friendly hug from family members or friends. A pat on the back triggered a jerk reaction in my body as I worked to remove that offending hand. A hand of support brought forth the same response. I was deprived the human need to be touched and to feel.

So many health officials get it wrong when trying to warn of the dangers of raw sex. People who have raw sex already know the dangers and the risks. What they don't know is how to love and be loved. To find someone who accepts you as you are, whether it's a gay man or even one already living with HIV. Now that PrEP has arrived on the scene, warnings of raw sex is being moot, but even the arrival of PrEP itself signifies the needs of others who want that closeness. Those who don't want a barrier in their way of lovemaking or whatever you call it, who wants to be connected. Sometimes the fascination with raw sex is looking for that connection as you simply want to be part of something.

When I felt unloved and unwanted, I wanted sex raw. It's what kept me bonded to a person despite the sometimes negativity views of the act. It defined me as being desirable. It made me feel sexy. It made me feel. Emotions long denied to me. Although these feelings were temporary and sexual encounters sometimes meaningless, I wanted to feel something.

I have since elevated from a fantasy relationship and established a real bonding. I also no longer wrap myself in the presupposed belief that I have no value or worth because of my status. I have created a life released from shame and that includes my approach to sex. Yet I also respect those who seek the same closeness and don't instill my judgments. If anything we need a frank talk on the preference of raw sex and instead of talking about the deficit, look at the value. And hopefully appreciate and respect those who choose to enjoy the feeling of being raw.      



Aundaray on: On the web

More Than AIDS

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I have AIDS.

I say that as not to say I've been in denial all this time but rather, for many years I would never admit I have AIDS. More to the point if asked I responded that I'm living with HIV.

To fully understand my reasoning is to know how AIDS was seen in the early years. Back then the stigma was so strongly attached to the disease along with many other negative aspects of it. In the past AIDS was and still is seen as a death sentence by some. It's a red letter in bold lettering which signifies diseased. It's defined as rejection and a feeling of unworthiness.

I've had AIDS for years but never made that claim. In my HIV status, it was a barometer of how my body was doing. It was a number game as the official definition of a person having AIDS was once your t-cells fell below 200. A number created by the government and not one based on how you felt.

I found out I had AIDS when my number fell below that mark. A few numbers off and it made me part of the A-club. I believe at the time my number was 189. And although I had crossed that line, according to my doctor I couldn't uncross. I was informed once you have an AIDS diagnosis you can never go back to having HIV no matter how high your t-cell went.  It sounded like fuzzy numbers.

Numbers took over my life as I wanted to prove to everyone, even myself that I didn't have AIDS. I started to eat right, love right and do the right things for my body and mind. I went to gyms and lifted ton of weights and ran on treadmills like my life depended on it. I ate garden of vegetables and bounty of fruit. Yet although I was at my highest t-cell level of 650, my medical file still listed me as having AIDS.

My mentality for a while was warped around those four letters and my thinking soon followed. It was a 'what the fuck, I have AIDS so why care' way of thinking. My actions soon followed with unhealthy behaviors and a blind eye to what was in my best interest. I no longer cared.

Bu then a moment hit me, I don't know exactly when. But there was that moment when I no longer allowed myself to be defined either by HIV, AIDS or numbers whether it was t-cells or viral load. Not to say I didn't monitor them any longer but I had to stop letting it dictate my life and how I saw myself.

I am such much more than an acronym. I'm so much more than a numerical value based on my blood. I'm so much more than what a doctor writes in a file with my name on it. I'm much more than AIDS.

Reclaim.

I reclaimed my life and by doing so reclaim my purpose. I move forward on the notion that I'm defined by my ability to go after my dreams and goals. To not let an A or an I or a D nor a S to bind me. I spoke of reclaiming out loud so those newly diagnosed didn't follow my same way of thinking.

You, yes you reading this are not define by this disease. Whether you have a diagnosis of HIV or AIDS. You are greater than those words and numbers. Say it, state it, believe it and reclaim your life. You're more than AIDS.   



Aundaray on: On the web

The + and - of HIV Online Support

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The + and - of Online HIV Support 

 

Things sure has changed since the last time I was diagnosed with HIV. We're talking about 1986 when the rates of HIV were low in addition to services offering support. Learning you're HIV positive can be such a traumatic and life changing event, that it makes sense one wants to speak to anyone who can inform them of what lies ahead. In the mid 80's there were no such thing as the internet, the ability to Google or online chat rooms. And what information available was called into question as it was still a guessing game on not only how what HIV was but how to live with it. 


Push the clock forward to today and now there's so many resources at your fingertips, literally. Whether it's to find  support, locating a new HIV specialist, learning about medication options or finding a romantic partner who may or may not be HIV positive but open to dating someone who is. 


Today we have message boards both moderated and un-moderated by individuals around the country who comment to each other about their HIV status. Like me, there are others who share their stories within a blog- providing their experience in order for people to relate or be inspired. Dating apps are adding a field for people to self-identify as HIV positive,  making it easier to reveal your status to a potential partner or new friend. And information pertaining to the community is available as it shares local resources available for those living with HIV.  


Yet like anything in life there's negative and positives. Online support and information for HIV is no different than the real world as one learns how to navigate and locate correct and supportive information. HIV online support sometime comes with it's own risk and rewards.  

The following are what I consider the plus and minus: 

Plus 

  1. For those who like to remain anonymous about their status and lifestyle- this can be a way to have discussions that pertain to your situation. Whether through forums or online discussion- they can share without fully sharing personal information.  

  1. Those in rural communities and some metro areas often lack the proper access to HIV information. The internet can open this world and based on search- provide the necessary information one needs. It has the opportunity to lessen the feeling of isolation.  

  1. Dating can be difficult for those with HIV based on the stigma which exists in both the straight and LGBT communities. Along with the known online dating apps there are emerging ones specifically designed for those who are HIV positive.  

  1. One can research new studies being conducted within the field and learn about medications which are in development. This information can provide a hopeful outlook on what lies ahead in the future.  

  1. One of the greatest benefits is to create an online community which encourages you as you share information such as keeping regular doctor appointments, the positive effect of new medication you're taking or sharing with people the good news of your t-cell or viral load numbers. In effect you have the ability to create a cheering section. 

 

And as stated there are also some downsides of online HIV support which must be taken into consideration.  

  1. Although some online support groups can be a great resource, they don't have the same rules of a professional run group. Some groups may not be able to assure information you share will be held in confidence and discreetly. 

  1. Also one has to be mindful of who's in the group or who's running it. Advice given by fellow members and even the facilitator can sometimes be inaccurate. The information is sometimes only one persons opinion and not medically sound. 

  1. Online dating sites, even for those who are HIV positive may attract different people for different reasons. One may join to find a long term mate, but others may simple be looking for an immediate and one-time sexual connection. Also a risk for those who are discreet within their community, is having your picture with your status which can be shared with others locally online. 

  1. I feel one of the largest drawback of simply having your HIV support online is it can exasperate feelings of isolation, one of the precursor to depression. A balance should be in place to not only have online support but someone who can offer some type of support in person. 

  1. Another drawback is to the ease to use online HIV information in lieu of a real doctor visit or advice. It can be so easy to Google symptoms you're having and try home remedies- but when it comes to your HIV health, this can be risky and unadvised.  

 

Of course there's many plus and minus when it comes to online support. The secret as shared before is finding the proper balance to compliment your life. There are many reputable sites which has been in existence for years. Your role is to find who and what speaks to you and whether you trust it. It's hard to argue the advances which have been made and online HIV information shows just how far. 



Aundaray on: On the web

Domino Effect

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As I write this blog I'm flinching from pain. Just a few days ago I was discharged from the hospital after having a voluntary surgery completed on my right upper quad muscle. The procedure called for the doctor to open my leg, take the quad which had collapsed and re-stretch it back into shape with the goal of obtaining not all, but most of my range of motion. So what does this have to do with a blog about HIV? Everything as it highlights the domino effect of becoming resistant to your HIV mediation. 

My downward spiral has been documented in my previous postings as I sounded the alarm on how not to become resistant to your HIV medication. Rather than come from a scholarly direction, I instead shared my personal experience of becoming resistant to my medications.

Simply put, I wasn't taking the prescribed medication as I was supposed to. Instead I chose to take it when I 'felt like it' and most of the time I didn't feel like it. It was more than a drug holiday, it was a refusal to comply. About the only time I would take them consistently was when I knew I had an upcoming doctor's appointment and he would be looking at my viral load and t-cell numbers.

This may work in science fiction but in real life, your body is completely aware of your behaviors and it seems the HIV virus is even smarter as my inconsistency of my meds provided a window for the virus to build up a protection and make the drugs I was taking no longer effective.

The kicker is that I started out not wanting to take HIV medications, but now the choice was no longer mine based on my resistance. In fact the only option was an injectable medication named Fuzion. So I went from the simple choice of easily swallowing several pills a day to the hard choice of pushing a needle into my body, twice a day.

This is where the domino effect begins as often our body no longer has the assistance of medication to keep the HIV at bay. One thing leads to another which leads to another. A cold may lead into a flu which may lead into a more serious matter. A twisted chain reaction. For myself my domino effect was injecting myself with a needle into a muscle that didn't quite like it. It was not the medication but the way I was pushing the needle into my leg. Stubbornly using the same leg when I was told not to. That led into the muscle developing a weakness which limited my range of motion. With the limited range other parts of my body had to compensate which was now throwing off the natural movement of self. And as I became aware of the falling dominoes I knew that if I didn't address the muscle damage I would be facing a lifetime of using walking devices especially as I got older.  

Already my walk was being transformed, and not in a good way. People would ask why I was limping, not realizing that I had a quad muscle that was weak. A weakness which's origin began with developing a resistance to my medication. The loss of range in my leg affected other areas of my life as I could no longer go to the theater as bending my knee in a sitting position was difficult. I no longer had the ability to ride a bike or to even run. And the simple act of climbing stairs was difficult with me holding onto the handrail to go up or down.

Thankfully I have a job which allows me to not only complete the surgery but also the ability to work at home for the month it will take me to recover. I was able to stop the domino effect of all these negative actions working against me.

So for those who wonder what's on the other side of the HIV resistance wall. I will say your wish of not taking a pill is there. But just know along with that desire comes the unexpected consequences. If it's really difficult to take your HIV medication on schedule, I encourage you to talk to your doctor to find a routine that fits you and your lifestyle. I can guarantee the domino chain of events which follows drug resistance is not a game you desire to play.

Happily to share that since my reawakening I'm on a once a day regimen which has made my pill consumption so much easier and with this recent surgery I will be able to resume the full life I felt was denied me. There's no more dominos falling in my life!



Aundaray on: On the web


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