New Chapters, New Tears

Unknowingly I want to Cry.

Unsure  I know Why.

Undo this Shame.

I am tired of this Game…..

It is nothing but a Rhyme.

Unwittingly I am in Time.

My life of Tabs

My life.

Computer internet browser tabs. These are the things that dictate my life in a frantic search for knowledge.  Too much knowledge.

Cramming for school exams. Cramming for life.  Cramming for hope.  Cramming for the upper hand.

My internet brower’s screen is jammed with 23 tabs.  Each shooting from the other like a progressive weed.

I got a call this morning from boyfriend while he was at work.  He said he got a call from the infectious disease nurse we dearly love.  She is great.  However she does have the important job of middle man.  A job I despise.

He was told that he needed to get a blood test to confirm if he is susceptible to an adverse reaction to a drug they want to put him on.

One step closer to treatment.

He told me the name of the drug and I Googled it. Page after page after page.  Tab after tab after tab I opened to make sure I had all the information I needed.  However upon reading some of page one I had to open a link to read what that word meant then another tab and another.

I found myself acting like a frantic college kid trying to cram last minute. I was still in bed to be honest!  I had not slept well the night before and I decided today was my off day from the gym so why not.

It was now just after lunch and I was still in my undies with the macbook on my lap in the dark and curtains closed. I was consumed with the bright light.  This bright light however was not taking me closer to the heavenly father and all his love.  I was sinking.  I was desperate. I was scared. I was confused.

I had to stop!!

It was unhealthy.  I got out of bed, opened the curtains and started my daily routine as if I never got the phone call. I puttered around and put stuff away left out from the previous night.  I had turned the kettle on. I poured my oatmeal into the bowel, added the maple syrup and got a cup for my tea bag. There.  I did it. But my eyes wandered back to the macbook. I looked again.  What does this all mean. Surely I can handle this. Surely I can make sense of it all.

It was if I was a fine arts student thrown into statistical bio chemistry(if that is even a thing).  I searched and read and read….Where was this taking me.

My mind racing with AIDS denialists. My mind thinking, “is this for real, can this really help, will he get sicker?”

I was confused because all I knew was the name of one drug. ONE WORD consumed me.  I did not have the whole picture. My concern and welfare for my partners health was scrambled. I was scrambled. I was no longer a whole being.

I was setting my life and day up with 23 tabs of information of which I barely understood a full paragraph. I have a sense of what is going on. I know the basics and the popular understandings of drugs, the disease.

The phobia of AZT.(which is not the drug they  suggested but a drug that is commonly used in conjunction with the suggested drug, Abacavir) The toxicity of the effects on his body.  The shrunken face. I was now wearing a pink triangle. I had the Star of David on my chest. A scarlet letter. I would forever be known as the aids boyfriend. I would be the boyfriend of that guy with HIV. The stigma. The shaming behind closed doors or better yet the whispers on hookup sites and social media.

The forever questions of, what is wrong with….Why does your boyrfriend look different…..

Why are the Doctors picking a drug that can have serious serious health effects on my boyfriend. Is it not enough we have to deal with this disease now that you want to scar him with physical deformities…Is it his punishment.  They say AIDS/HIV has no face….It does…The sunken in face look…The phobias the social stigma and ignorance I grew up with to identify unwanted sexual partners is now what I live with.

Of all the drugs why does he have to be on this one…..WHY??

I reached out two HIV positive men I have a social acquaintance with. I have been reaching out to them for 1-2 months to be friendly. To have a social connection.  To eventually ask them questions when I had concerns.  BUT as of today, nothing…Life.

Life keeps people from people. The perceived notion that “I am too busy…for new people in my life”  SO here I write. My comfort of letting it all out.

It hurts…..So I am left with TABS.  Tabs keep me informed even though it may be overwhelming and unsettling to realize your new truth.

The New Normal

It has been 2 months yesterday since we found out that he was HIV positive.

It is starting to feel a little more normal.  I am afraid I or we will become complacent.  Nothing really has changed at this point in our life other than a few more Doctors appointments, a few more blemishes for him and a few new words to our vocabulary.

Even though it feels nothing like it was before it is something to be noted.

With this new normal it still feels like it has consumed me.  It never leaves my mind yet I feel more comfortable than I did 2 months ago.

Our struggles are still the same.  Our love has grown.  Our dreams have altered.

Two whole months.

What will the future bring.  Will he outlive me ?  Will I outlive him?

The future is still unknown and worrying about it will do nothing to help achieve my goals.

What are my goals?

I feel more thrashed into adult hood.

As a couple with no children and barely any debt we have been fortunate enough to live our lives as freely as we wished but now it seems as though we have more grown up things to accomplish to ensure the security of our love and future.  Health care, living will, insurance, will, power of attorney, all of these things seem to be a huge burden.

BUT must be done….no plan…..just a thought at the moment.

How Many Tests Does it Take to Be Negative?

This past Monday  I joined my partner to the local STI clinic where he has been getting his treatment(or lack there of) so far.  I was going for my follow up Hiv screening to ensure I am still negative.  He went for his initial blood work results.  His genotype blood work has yet to come in, which I hear can take awhile but 1-2months is a long wait when you want to get the ball rolling.

I gave my blood.  He got his results

His CD4 count was 514 and his viral load was over 400,000.  When they did a Viral load count for his diagnosis it was in the millions.  So that is good news. His CD4 count is average I guess.  Wish it was  higher but it is what it is.

Today I called the clinic.  Terrified.  This test for me was the last test to ensure I had not contracted it from my partner during the window period.  We had one sexual encounter during the month of May which is also the month the Dr suspects he contracted HIV.

This result for me was the most nervous in all my life.  All my life I had taken HIV results in stride.  This for me was the most nerve racking.  Scared.  Sleepless.  Lack of appetite.  Lack of motivation. All I wanted to do was sleep.  I made it though the week and made it to today.  Today I am HIV negative.  A big sigh of relief yet at the same time clouded with sadness due to my partners HIV positive status.

I am with mixed emotion as I sit here and type.  Still a little bit afraid and still wonder if “it” is in me.  I know I am healthy’ish.  I know I am strong.  I know I am being realistic but always the wonder if it is hiding.  Is my immune system strong enough to fight it off is it ……too many thoughts.  SO all I have to deal with at the moment is the facts and the tests. At this moment in time after 4 blood tests, May, June, July and August I am HIV Negative living in a Positive world.

I have to remain strong.  I have to remain committed to my emotional and physical well being and I must be supportive with an open heart and mind for my partners needs as He still is on this journey…

“This too shall pass” is not really an appropriate phrase for someone living with HIV…as It never passes. It subsides….It reinvents itself and every day we learn something new.

Each day I find myself wondering.  I find myself asking, why?  I ask myself, what does it mean?  I ask myself, now what?

What am I to do now ?  What am I to do with my partner?  This is not  how I pictured my life?  Do I have a choice? It is like “sometimes and a very vague small sometimes” it is if someone stole my partner and gave me a new version and said” now deal”!

ANGRY ANGRY, WELL I AM UNSURE.-AUGUST8TH

I am still very in shock and in disbelief that this is happening. When I see my partner whether it be when I talk to him directly, see a picture of him or from the corner of my eye. I can not stop thinking ” my poor boy”
It makes me very angry…..
I am not angry angry where it consumes me, yet.
I am more angry at , well I am unsure.

I was making lunch yesterday for us and he was sitting at the table eating oatmeal and he did not seem himself. He said he was not having a good day. I put my stuff aside, turn the burners off and sat with him, holding his hand and just asked, “How are you feeling?”

He then began to open up, teary eyed and had a conviction in his voice. He cried and spoke angrily and was very true. He was speaking from the heart and I understood what he was saying.

It is good that he is opening up to me but I am afraid that when he speaks to a professional he won’t be as forthright and honest and emotional.

He has a lot bottled up.
He is angry at the system. He is angry it*the system for blood work results taking over a month*, appointments to get those results, and secondary therapy and support, is so slow. He is angry that he was naive and could only have fun when he drank.

He said he was sad that he got this and has changed the course of our relationship. He was frustrated that he has not lived up to his “preliminary” expectations he set up for himself while he was waiting for his results from False Positive to Positive.

I can understand that. I understand that it is a lot for a person to accept, take in, mourn etc….I think he is being too hard on himself that he has yet completely lived up to his expectations. Such as, eat healthy(or even vegan), cut out bad foods(refined foods and booze) that he has yet to be at the gym, to sleep better, use supplements, things like that.

What He has done is make small steps and I think those have been forgotten about.
He has no plan. No timeline. No strength I think. He is emotionally exhausted. He has been working 10-13 hr days. Gets about 5-6 hours sleep a night. Eats 1 solid meal a day with a lot of veggies/nuts as a lunch and oatmeal and a banana a day. Hardly a balanced diet but it is a start.

It hurts so much to see him feel bad that he is tired and wants to either take a nap, fall asleep by mistake when he gets home or goes to bed early. I try to reassure him that it is ok and I am fine with it. I am of the thinking that it is best for him to rest and take care of himself now as it will benefit the future.

I went to the gym for the first time since last October 2 days ago for some cardio. I did 55mins. I felt old, out of shape but yet happy I was there. I was starting my journey to health so I could be strong for me and to help support him when he needed it. He then joined me yesterday for cardio.

Today I am at the library. I am taking some quiet time. Even though I hear kids romping around, high heals clicking and flip flops “fucking off”( i loath flip-flops). The whispers and the wrinkling of papers as they sneak into their snack bags.
It is a beautiful spot to come. You have a nearly 360 view of the city perched in a chair overlooking the city scares or the main strip of our pseudo trendy town. There is a light drizzle coming down washing away the humid and dust that has collected over the summer months. The sidewalks are bare. The trees are crisp with greenery.

I am done for today….

THE IDEA OF MEDICATION- JULY31ST

Last night I had a hard time falling asleep. My boyfriend and I had a conversation recently about his intentions regarding medication. He wants to go on meds as soon as his genotype testing comes in. The wait is so slow….We want to get this done now…Move on….

Last night as I lay awake in bed I googled Truvada and the side effects of it in terms of a Prep. It is a lot of information to take in. I am unsure what to do.

My boyfriend does not want me to go on it. I get that. With safer sex practices and waiting until his viral load is undetectable is the best idea to reduce the risk of contracting it.

Kidney disease runs in my family and it scares the shit out of me to be on a medication for a just in case scenario. My grandfather died in his mid 60’s from kidney and liver failure. With kidney function a possible drawback to the medication I am uncertain I would want to take that route as it will just provide more stress and with my personality….That would not go over well….

Then it makes me think of my boyfriend who has a disease that could kill him in 7-11years without medication…Yet the medication could have it’s own setbacks with vital organ failure.

Loss is such a big component of love of life and the human condition.

I never ever really thought about my own mortality until I was approaching 40. It is a dynamic complex range of emotions. I will die someday. I have lived this long….How long will I live ? I may outlive my partner, He may outlive me. Then this happened. Now what…Sure he may live a long healthy life with a few hiccups in his health…We can over come this….He can over come this.

My partner is all of 135lbs soaking wet…He has always been a small framed man….The only time he was “fat” as he calls it was when he was in Jr.High School. I have never seen him with extra body fat. Always lean. Always able to drop weight easily. Always a hot body. He was teased in his early adult life from friends as having chicken legs…..He has nice legs I think….Very masculine body for a man of 5’83/4 and a 28″waist….sometimes 29″….In the last 18months I would say he has put on weight and is weighing the most I have ever known him to weigh…He does not like it. I think he looks healthy and strong.

With this being said it frightens me if he has any wasting…fat redistribution from medications or side effects of having HIV. Will he become sad. We he accept it. Will he look sick…..????
Is it a race against time to put on some serious muscle mass….Can he bulk up?

I am dreading the idea of side effects. I am scared of him being sick, headaches, etc from the medications. Will he tolerate it? Can he cope? Will this set him back? Will it give him hope?
Does he even need medication? Many reports are coming in that state that early treatment can prolong a positive health status and possible add years to your lifespan. And on the other hand, some men tend to wait until their CD4 counts are low and need the medications. Some men are natural, Elite status…..they can fight it off and maintain their immune system. What will come of this?
what will come of all this? Will he start to feel like it is real? Will I think that this is finally real? Will I be a positive light in his journey with medications or the nagging the reminder ?

In my experience meeting gay men who have HIV most of them look healthy and sexy. Very fit and probably the best physical shape of their life. Will this be the case for him ?
I hope so.

I hope that his results come back soon. It takes so long in our area for CD4 count, Genotesting, etc to come back…We were told it could take a month or so. Would be better off in a larger city ?

When can he come a pill popper ? I have stocked up on condoms for the day….

A TIME FOR TEARS-JULY31

One can not imagine the path an HIV positive result will take you on. It is a roller coaster for sure. It was just the other day that I found myself crying uncontrollably and in need of my partners loving arms to comfort me.

I got out of bed later and I wanted. I have been staying up late unable to sleep with a wondering mind and a restless leg. I have been staying up late watching comedies on Netflix. I was exhausted. I am sure the irregular bedtimes are a contributing factor to my sadness and my inability to get out of bed at a decent time. I did my normal routine. Picked up random items in the apartment, put them in their place, open the curtains, pick up boyfriends underwear off the bathroom floor…

I turned on Apple music and jumped into the shower. A song by a mens group, Collabra was on and I started to get teary eyed in the shower. Struggling the grasp of tears I fight it off. Not wanting to give into the sadness that music can trigger. I struggle before I collapse and allow myself to cry and wash my face with the tears. I let the water pour over my shoulders and down my back and let the emotion ride….I get out of the shower. Dry myself off hoping to start my day with a fresh perspective but it comes again. I stare at the clothes behind the curtain, trying to pick out a shirt and I am hit with a tsunami of emotions. I am overcome and just lean into the shelving and let myself cry. I lazily throw on the same clothes I wore the day before just to get dressed.

I go into the kitchen to do last nights dishes. Boyfriend and I have a “rule” whoever cooks gets out of dish duty. Since we had a late supper I told boyfriend to leave them and I would do them in the morning. I turn the water on and I am hit again with another wave of emotion. I am just being sucked into this drain of sorrow. I turn the water off and lean against the island and give into the sadness once again.

I cry and cry and cry. I realize I am getting louder with my sobs so I stumble into the bedroom to cry. I walk into the room seeing our Mexico trip photos, the music now turns to a “us” song and I just collapse into the comfy changing chair.

I cry and text boyfriend to come home. I needed him. I could not do this alone. He replied with ” I will be home soon”…I cry and cry and cry…I then make myself to the bed and started to sob like a teenage girl sobbing over her lost love. I am drowning in the sorrow of the lost love of what was. I was mourning. I was overcome. I knew the day would come that I would have to just let it all out. It was now 5 weeks since his official HIV positive status.

I am laying peacefully stuck in a wormhole of thought. I am not crying as my eyes are sore and puffy. My throat begins to ache. That tenderness inflamed side of your throat from over crying. I lay there with his t-shirt as my blank/snot rag.

He comes home. I lay lifeless on the bed. It was a rainy’ish day and I hear him change into his pjs and he joins me, rubs my back, his breath against my neck and the songs continue to play. I am hit by an aftershock of tears. I sob and sob and sob. Huffing for air. Grasping for reality to save me from these tears. Memories and Anger start to flood my mind. I stop long enough to blow my nose and look at him. Giving him a look in the eye to say thank you only to cry again. He holds me tightly every so gently rubbing my back.

I collect myself. I look at him and stutter the words,” I love you… (name here)” He looks sleepy. I hold him…I mutter a few words on how I hate this. I don’t want this, I want my old (insert name here) back…I don’t want to not know what is going on….He says nothing but comforts me. I cry a little bit more before I tell myself I don’t want to cry any more. My snot rag has now become saturated with tears and….

I sense he is getting more sleepy so I go to the other side of the bed. Throw the nap blanket on him and let him sleep. I hold him long enough for him to be asleep as he holds my arms tightly. He snores and I know it is my time to go.
I close the curtains….turn down the music and go for a walk to allow him so alone time.

I remember my mother telling my first and only other boyfriend before my current partner some advice on how to deal with me.
It was my grand fathers funeral. The first death in our family that the whole family had to deal with. We were all old enough to feel the pain of the first immediate family member to pass.
He was my name sake. He was my Grampie. My mom told my first boyfriend to keep an eye on me. I tend to bottle things up for a while then explode. I put on a brave face and move on with life. Then out of the blue “it” will hit me. I still am that way. In a lot of ways but when it comes to love hurt and the emotions that come with it…..Yes I bottle it up. Deal with what has to happen now and deal with emotions later.

I had some glimmer or sense that my time was coming. I had a few very sad days. I had stayed up late one night and I had cried alone. I had headphones on and i had cried a lot to one song. A song that meant a lot to me and my boyfriend. You hear and see things differently when you are going through a life change.

I know the stages of mourning. I know the stages of grief…I do not want to be angry. I know it is normal. I know how i use to deal with anger. I know I am capable of dealing with in a proper constructive way that will not hurt myself or others.

When you hear those words,” you are HIV positive” things don’t seem to matter as much anymore. What is important. What is love. What is family. What is private. What boundaries are important.

IDEAS CHANGE. DESIRES DON’T-JULY25TH

It has been a roller coaster to say the least about finding out that your long time partner is HIV Positive while you remain Negative.

Perspectives slowly change. Aids Phobias come to light, Ignorance and Values seem to fall as ideas and Reflections shape who I may become. Ideas I once felt defined my security from contracting HIV now are useless as it now prevents me from loving and being a compassionate person with needs and wants.

Risks. Possibilities. Chance. Numbers. The Stars Aligning. Everything now seems different. I am learning a new way of living.

My desires to be be sexual with my partner are now limited. My fantasies. My interactions. My cautiousness prevents me from fully loving my partner. However with all this being said I also understand that at this point in time, in this moment for a brief time frame things will be different.

One can still be intimate with a partner. One can still show love. One can still show sexual interest in an HIV positive man until it becomes safer. At this point I am held back by my partners lack of self worth. My partners desire to keep me safe and HIV negative. His idea that he is toxic and dirty.
I can show love in many forms without it being sexual.

Being sexual is just a small yet important part of the human experience. I can express love with kind words. I can show him loving gestures. I can provide cute small gifts. I can also use sexual touch in a loving caring way that may result in climax or not. All these pillars of love are important. I have learned that the 5 love languages are all vital to a healthy relationship. If for some reason on one persons reasoning or another one of them can not be fulfilled due to other factors the other pillars become more pronounced. As sexual contact has always been a strong part of our relationship we are now discovering new ways to show sexual love. It is different. It is new. It is exciting. And it can also be a reminder that things are different. BUT things never stay the same. Communicating is a huge aspect of this new journey.

We at this moment in time have only resorted to hand jobs and touching. It is new. Boundaries must be respected. Fears and distortions are prevalent yet understood. They will not define us yet they are important to share.

Some day we will engage in hot oral sex, we may even engage in anal sex again. It will be shaped by safer sex guidelines that we have only once shared in the beginning of our relationship and have since forgotten about. Obviously. So we must relearn how to use a condom properly. When to use it. How to dispose of it.

Recently being diagnosed and with the Doctors suspicion based on the tests, viral load etc that the infection was contracted within 30days of his diagnosis he is still very much contagious. He feels dirty. He feels toxic. I get it….well from the point of how he describes it. Knowing that he was and is asymptomatic and yet his body is changing is a unique path to be apart of.

He says,” you have needs”…..Yes I do…yet they are hardly comparable to your state. He is tired a lot. His mind is running. He is consumed but it. I listen when I am asked. I am there when he does not know it. I comfortable lap to lay on to nap. An embrace to fall into when the day becomes too much.
My love is shinning and is growing stronger than I have ever felt. Love is love. Love can be tiring yet it so much more rewarding.

He craves normalcy. I crave realism. He craves “lets get my life in order and moving”. I crave attention.

How we lived out life is now over. Our road map has been modified. Our life path has now been stopped by a yellow light. Ideas and new values are forming yet not yet dictating our life. A new set of rules or values have yet to define me. I know I am changing yet I do not see the road.

My desires are still the same. I still crave a hot raunchy night of piggy sex. Throw in a couple of guys with naivety thrown to the wayside. Yet this is my reality. It happened to him. Not me. It sort of feels like survivors guilt. I am left behind. Yet the thought of lets say going to a local bathhouse and being amongst 5-8guys sucking and fucking bareback(as an insertive player) now is starting to revolt me. I crave it yet I feel less inclined to do it.
It is sort of the same mentality of…” oh, my results are negative! I will behave. Two weeks later you find yourself balls deep in some dude and you are back at square one.”

…LIVING WITH POSITIVITY IS EXHAUSTING-JULY15TH

Tears.

Anger.

Confused.

I am tired of it all….

Today is my worst day. I am alone within the confines of my apartment paralyzed with thought.
I am a cyclone of ideas awash of emotion with the news of that my life is changing.

I have no idea what to do.

I am tired of pretending to be strong. I catch myself wanting to cry. The feelings bubble up, they spurt and then they are buried. I just have no energy to be sad….
I am tired of just being……

I am hardly at the doorstep of anger but I am close.

I am shipped wrecked on this island of sadness…..

One night last week at 130am I listened to an old “us” song(3x) only to find myself crying like a 17 year old girl dumped on Valentines Day…..new meaning….. “come what may”

ONE MONTH AS SERODISCORDANT- JULY22

It has been one month since my partner of 15 years has had an idea he was HIV positive. On June 11th my partner went to the Infectious Disease STI clinic for his results. He was told he was False Positive. I was not home at the time to go to the clinic with him. I had been away house/dog sitting for my parents in another province. I tried calling and texting my boyfriend for an hour or so but I had not heard from him since the early afternoon.

Earlier that day he had texted me to say his STI results were all negative, hope!!, however his HIV was delayed due to a backlog in the lab. That was the first lump in my throat. I knew something was up. It just did not add up.

The Doctor had called my partner as he was on his way home from work on public transit. The Doctor had explained what the delay was about and how he was False Positive. My Boyfriend says he was stunned yet had to pull it together and just listen as the Doctor spoke to him. My boyfriend told me he walked home as fast as he could but does not remember walking home.

A few hours passed and I received a FaceTime request from my boyfriend as my sister was driving us to see my 3 year old nephew play soccer. It was not the time to have a conversation with him as I could tell he seemed upset. So I asked if I could message him back in a few minutes. It was the longest 8minute drive.

We made a pit stop at my sister’s house so she could change. I called my boyfriend back several times over FaceTime before I could reach him. I was anxious and sick to my stomach, worried he had done something drastic. Worried for the worst case scenario. He said the words to me for the first time, ” I’m False Positive”. He looked completely lost and saddened. Crying like I had never heard him cry. The hurt and emotion he wore on his face killed me inside. I was in shock. Nothing had prepared me for this. What hurt most was I was away and nothing I could do.

I asked my boyfriend several times how he was. Made sure he was in a safe place and ok. I was scared. I was scared for his mental health and what may unfold in the following hours. I was a zombie. I was dead inside. I was confused and lonely and felt helpless.

As I watched my nephew play soccer I hide behind my sunglasses and fake smile to dismiss any attention from me that something was wrong. I was not present. I was lost in my mind. My brain was racing with solutions.

My sister and I left the soccer practice and she drove me back to my parents. I took the dogs for a walk and FaceTime’d boyfriend again. I told him I was coming home tomorrow to be with him and to be with him for his second Clinic visit for more blood work.

Feeling helpless and so far away without a drivers license is a horrible feeling. I had to call my best friend who is also my ex boyfriend in another city to rent a car, come pick me and the 2 dogs up and drive back home to be with my boyfriend.

It was the longest drive of my life. It is only a 4-5 hours drive but it could not be over soon enough. I just wanted to embrace my partner and never let go.
The drive was good. My best friend and I shared many stories of yesteryear and of the situation at hand. It was good he was there for me. He has always been there for me. He knows every dirty little secret I have and I his….

It was good to have a distraction the first day I was back home with my boyfriend. That first night home we entertained my best friend/ex to a night of snacks and laughs. It was good to not think about it. It was good to realize life goes on. The night came to a close and everyone went to bed. Ex on the couch and us in bed. I was wide awake all night. Boyfriend slept soundly, snoring but soundly. Ex sleeps with the tv on and snores as well. It was a murderous evening of thoughts and frustrations.

Morning. Fresh Start. We went out for breakfast to Smitty’s for a gybes breakfast. It was refreshing and like old times the two of them ganging up on me for their private jokes they share about my ‘isms. He drove us back home, let us off and he drove off.

Day ONE!

We cried….we talked, we walked…..
There was hope. What were we to do….Sunday came and went and now it was the Eve of the second test. Sleepless again.