World AIDS Day 2018…My Day of Reflection

Yesterday was December 1st, which is designated as “World AIDS Day”. This year was the 30 year marker for observance of this day. HIV and AIDS have been around long before this day was designated to bring the crisis to front-mind awareness.

I was diagnosed in August of 1993. I had been in a “no-risk” space at that point for approximately 3+ years…so, I was infected in the late 80’s. I actually am one of the rare few who know exactly when and where I was exposed to the Human Immunodeficiency Virus (HIV). It was a one-time share of a needle, which was very out of character for me, but it happened due to the situation at that moment. I don’t know if it’s “good” or “bad” that I actually know my infection route. I guess it’s good in the sense that I never wonder “how” I got the virus. Yet, it’s bad in the sense that it makes me “blame” someone else in some ways, when it actually was entirely my choice to share that night and thus my own fault. I have always worked to take responsibility for my own actions and I made a split second choice that night that was the wrong choice and thus changed my life – or at the very least altered the trajectory. We never know what’s going to be handed to us in our lives, we just never know. 

In the 1990’s I lost quite a few friends in the height of the AIDS epidemic. Prior to knowing my own positive status I was working with local organizations to spread prevention information.  In the summer of 1992 there was a March on Washington (I’m sure that many of you remember) and it was one of the very last times that the AIDS Quilt was displayed in it’s entirety on the Mall in Washington DC. I was there that day; I walked the quilt with my best friend, Nancy. I was moved to tears over and over that day. Each of those panel represented someone’s life. Each panel is 3 ‘x 6’ in size, representing the basic size of a coffin. Every panel was handmade by someone who loved that person or even a group of people would together make a memorial panel. There was something cathartic in the whole scene. 

I vividly remember sitting down on one of the benches on the edge of the Mall with Nancy, taking in the enormity of the display. It covered the whole Washington Mall. Quite the feat of volunteerism to get it displayed with huge amounts of care and dignity shown by all of them. The quilt idea was borne of Cleve Jone’s incredible mind. It’s called The Names Project and is still in operation today. The quilt now travels in smaller displays around the country. I’m not sure how big it would be to be once again displayed in it’s entirety. I highly recommend that you visit the Quilt’s page and take some time to look it all over, reflect, learn and NEVER FORGET. 

The display that day brought my mind very close to beginning to think about getting tested myself. Up to that point I had not sought out testing for myself. I naively figured that since I hadn’t been using illicit injection drugs for over 3 yrs. and I hadn’t been sexually promiscuous with anyone who I thought of at that time as a risk, that I couldn’t possibly have gotten infected. That was pretty standard thinking at that time. We have learned so much since! I recall having a physical reaction as I walked through the miles of panels and I shudder to think that now the Quilt has more than doubled in size. It still gets displayed, in partial displays, around the world.

So, that was the beginning of me thinking about getting tested. Finally in July of 93 I got pneumonia and my then therapist urged me to get tested; just so I would at least know if there was any chance I had been exposed during my drugging days. So, in mid-August I visited the Feminine Health Center. I was paired up with a great counselor, Assiah, who interviewed me in-depth about my history and possible risk factors. Then we drew blood and it was sent out to the lab for testing. The whole process I remember cost me $25. But in my mind I was going to come back negative and those who kept urging me to get tested would shut up. The tests at that time took 2 weeks to process and you had to go back in person to receive your results. On Aug. 31, 1993 I went back for my results.  

I was taken into the private discussion room by Assiah. She quickly closed the door, spun around and said “You’re positive.” then burst into tears. I stood there stunned. I didn’t know what the fuck to do at that point. She was obviously upset at having to tell me this news. Come to find out, as she told me later, she had never had to inform a woman of a positive outcome before, only men. And the fact that I was lesbian and was HIV+ was very unique. Lesbians are known to be in the least-risk group for infection and were usually on the front-lines of care and prevention.

I remember sitting down and putting my head in my hands. I was super confused. I felt like I had literally been gut punched and was gasping for air. There was now an expiration date stamped on my forehead. Fuck. I knew this was not going to be a good experience; nope, not good. I asked for a second test and had more blood drawn for it, but I knew the result would still be the same. I now had to figure all of this out. I had to first tell my family, and I knew that would be the hardest thing. And I had to get educated; to learn how I was going to beat this beast within.

I have lots of side stories of telling various people in my life about my infection and how it related – or not – to them and our relationships. My family all gathered at my home at the time, and I told them all together. They, of course, had lots of questions, were very upset and concerned for me, all while bursting with love and support for me. Thank my lucky stars for this, I don’t know what I would have done had my family shunned me, as happens in so many instances. Things would have definitely turned out very differently had that been my case. I am super grateful that it was not, but I feel deeply for those who do encounter that kind of response – especially from family and close friends.

My life changed on that day. It was a definitively distinct change. I could no longer be as casual as I had previously been about love, life and living. I quit drinking immediately. I also discovered on that same day that I am co-infected with hepatitis C, a common hepatitis for IV drug users to contract. I had been an on again off again kind of alcoholic. If I wasn’t shooting hard drugs I was drinking myself into comas. Yes, some serious self-destructive behavior, I know. I figured I wasn’t going to live long at that point. Back then the average time between diagnosis and death was 3-5 years, sometimes a little longer for women. I just concluded that my future was over; I had no future in my mind at that time. But I was determined to educate myself and those around me so I could live as long as possible, as healthy as possible. 

So much has gone on in my life since that hot August day in 1993. Life has a way of changing continuously. We grow. We learn. We lose. We win. And life just continues to go on. I had been handed a massive challenge and there’s nothing that I like more than a good fight! I put my whole being into becoming as educated and informed as humanly possible. I began living a cleaner, healthier life. I learned to love those who loved me with a renewed fierceness and determination. I stopped being a total asshole and adopted a kinder, gentler way of conducting myself. And I fought. 

Today, I am healthy and doing very well. My journey hasn’t been so smooth sometimes; I’ve struggled with addiction all of my adult life. It rears it’s ugly head occasionally and it’s a battle to the death for me. I’ve had many, many good years; fun years and years full of awesome memories and tons of love. I’ve travelled, farmed, built, raised, and let go of things when the time came. I’ve had a couple of spectacular relationships that I wouldn’t trade for anything. I discovered real love and basked in it like a snake in the sun. I’ve lived a pretty decent life; being lucky enough to have access to great medical care and the cutting edge in medication I remain healthy and happy.

So, yesterday is my annual day to reflect on these years of living with HIV and to remember those friends of mine who didn’t have the good outcome that I’ve been gifted. I remember their faces, their voices, the laughter and the crying; every one of them beautiful and a gift to earth in their own ways. May they be dancing wherever they are. 

Peace ~ MB

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An Addict in Your In-Box…

candleSo, you see a lot of articles and television stuff about the “opioid crisis” in America lately.  This is a real, serious epidemic here.  Let me rant on a bit here and give you some of the scoop from inside an opioid addict’s life and mind…bear with me, this may be a bit harsh to some, and I also offer up a trigger warning – some of this is very graphic.

Let me dispel some basic myths first.  No one “wants” to be an opioid addict.  It happens for various reasons.  I have seen the gamut of people addicted to heroin and prescription opiates.  From high-school aged kids – both from up-scale homes and street raised – to doctors, lawyers and pharmacists themselves.  I know addicts in every kind of job and walk of life. The addiction doe NOT discriminate at all.  YOU can easily fall victim to this powerful drug epidemic.  Break your leg, they will prescribe you oxycodone, probably 15mg tablets, 4-6 times a day…take those for 4-5 days and POOF you ARE addicted to them and when you stop taking them you WILL experience withdrawals, irritability, nausera, and depression – stay on them long enough and those things will all occur at once, sending you into a desperate need and search for something to stop that pain and agony you are going though.  You either get a new prescription, a refill, or you “borrow” some from your neighbor, sister, brother, other relatives, or kids.  Everyone seems to have them nowadays.

Not only do opioid drugs like oxycodone or heroin, morphince, methadone and Vicodin help to block pain in the body, they also induce a euphoric state; a feeling of well being and they boost your energy.  Doesn’t that sound like something we ALL would like to have?  Wouldn’t you like to simply pop a little blue pill and have your day go 100% better, have lots of energy, have a nice warm feeling in your body and feel at peace?  THAT is what opioids do, they enhance the sense of well-being, feeling good, and energy and those become feelings that you need every day.  I’m sure there is a chemical thing that happens in the brain that causes all of this, I am not a medical professional – I am an addict – and thus I can only give you a very personal view and personal first-hand knowledge of what it’s like to BE an addict; how I got here and how it entwines with my life.

As I was saying, anyone – YOU – can become an addict in a short few days.  Prescription opiates (pain killers) are the gateway to addiction.  It’s a double bladed sword, we need something to relieve pain when necessary.  Suffering with severe physical pain is never a good thing for anyone.  Some pain, such as that associated with cancers eating away at a body, must be combatted with prescription opiate pain killers.  I would never want someone who is going through that kind of intense pain to NOT have what they need just because a doctor is worried about addiction.  Addiction at that point is mute.

When one goes from a prescription pain killer addiction to street drug addiction it is always for one reason – they were cut off; denied further prescription medication.  THIS is the part that the medical community needs to really, seriously deal with .  When you develop this addiction by “accident” because you are put on prescription opiates they need to EDUCATE the patient – YOU – about several things.

  • #1.  The chance is VERY good that you will develop both a physical and mental addiction to the “feel good” pain killers.
  • #2 You cannot just STOP taking them without going through what can be severe withdrawals, like vomiting, the shits, shakes, yawns, sneezes, watery eyes, irritability, depressiona and yes, sometimes even suicidal thoughts.
  • #3 Over time you will require higher and higher doses (usually in milligrams, mgs) to achieve that same pain relieving, feel good feeling.
  • #4 Never mix opiates with benzos…cocktail for death…Google it.  This can also cause some weirdness and has frequently lead to suicide in many patients.  Same goes for mixing these powerful opiate drugs with alcohol, cocaine and methamphetamines.  Always consult your doctor – or google if you are a street user – for information.  Even better, don’t be stupid and mix ANYTHING with your prescription pain killers just to be on the super safe side.
  • #5 When it’s time to stop the pain killer you need to talk to your doctor AT LENGTH about HOW you are going to do that without going off the deep end, or seeking them (or substitute drugs) outside of medical care.  i.e. on the streets.  You should develop a “plan” to taper down your dose slowly over a couple of weeks until you can stop without going into withdrawals, without having the DTs and without having serious “cravings” for the drug.

Addiction is serious.  It’s easy as pie to become an addict too.  As I have explained above it can happen in a snap with the simple injury that requires opioid pain relief.

Not all addicts entered the world of addiction via this prescription route.  Some started directly with street drugs, heroin, fentanyl, dilaudids, morphine, or opium.  They (we) start this way for other reasons.  But generally there IS pain involved – it might just be emotional pain one is trying to mask with the use of the drugs, it might be the remnants of a traumatic incident or situation in their (our) lives.  There are many reasons, each addict of this kind has their own.

My story:  As a kid I started to “dabble” in illegal substance abuse at an early age – 14.  I was emotionally disturbed, hiding my sexuality and identity all the time and under stress from doing that.  Doing recreational drugs with people I saw as “friends” at the time was an escape for me.  It made me feel good about myself and took the “pain” away for a little while.  I messed with a wide range of substances, pot, LSD, mushrooms, PCP, cocaine and prescription (illegally gotten) stuff like Vicodin and Percocet.

To keep it brief here, I stopped for a number of years.  But I was still an addict in my mind.  I still had the cravings, still had the inclination to “slip” although I did not for many years – 18 all told.

Then I fell into the prescription drug rats nest. I had degenerative disc disease in my back, herniated discs in my cervical spine and lower back as well.  I have neuropathy (a pain and tingling feeling in arms and legs) and I was miserable.

A doctor in Boston one day handed me a prescription for Oxycodone, 30mg tables (magic blue pills) and said, I quote, “They make these for a reason, you are the reason…you shouldn ‘t be in pain, these will help.  Let me know when you need more.”  unquote.  On that day I became a prescription opiate addict.  Those little blue pills helped me a LOT.  But not only did they mask all of the pain, they gave me a feeling of elation, lots of energy and took away my depression.  I thought they were gold.  And for the next several years – about 7 in all I guess – I got refill after refill, legally.  AND he added Morphine 30mg, 3x a day tablets (long acting contin) to my regimen.  My pain was under control.  But what I did not realize at the time was that I was becoming a serious prescription drug addict.

In my mind I was a recovered addict.  I quit the “drugs” I had been doing recreationally years prior, so I didn’t have a problem anymore — or at least so I thought.  And I was living a pretty “vanilla” lifestyle with my wife on the farm during those years, so I  definitely wasn’t an “addict” again.    Hell, I had a legal doctor’s prescription for the magic pills.  AND I had NO idea that I was actually part of the beginning of a huge epidemic in this country.  Yes, it was a rather naïve time in my life.

The story is one I know many can relate to.  As time went on I required more and more of the pills, higher doses.  My doctor happily obliged and upped my dosage so I wouldn’t run out of  pills.  Everything was going along swimmingly.  I was working, living and having a good life.

My life changed one day.  My marriage ended.  My friends were gone (with the ex). And I found myself alone.  I struggled a bit.  I ran into “old friends” from my younger days.  Some were not so good of influences on me.  One showed me that the magic pills (oxycodone 30’s) were great to “get high” on.  You could crush them and shoot them intravenously.  Somehow, at the time, my mind thought this was just a novel idea!  And thus began my “abuse” of my prescription drugs.

This lasted to the end of the 7th year on them.  Then, I changed doctors.  The new doctor wrote me for a while…then she got suspicious that I was abusing them and started to cut me back, told me I needed to wean off of them and find new ways to deal with the pain.  I worked on this, I did inter-skeletal injections, in my back, in my neck, and in my shoulders.  I continued to get the oxy’s for quite a while, just fewer of them, and by this time my “friends” were always around begging to buy them off of me, too.

I ended up at he Pine Care clinic.  Another name for legal prescription drug abuse in my opinion now.  They continued with the morphine 30’s and Oxy 15’s (yup down to 15s!) and I did that tight-rope walk for a while.  They would only give a 1 week supply at a time.  My “habit” – the amount I NEEDED to not be sick with withdrawals – was MORE than they were prescribing.  So I began also buying the thru other channels.  You can get anything you want if you know the right people and have the money.  I did that for a while…then the Pain Care clinic cut me off – COLD.  NO taper, NO weaning off, NO help whatsoever.  It was sheer, utter HELL for me.

That is when I took my addiction back to the illegal substance market.  I swapped out the oxycodone and morphine for heroin and fentanyl.

I tell you all of this to give you a personal chronology into the making of an opiate addict.  I just want people to be aware that ANYONE can be an addict.  This shit doesn’t care WHO you are, how much money you make, what kind of high powered job you have, who your parents are, or what your “social standing ” is in the world.  It will sneak up on you and bury your ass.

Today I am in recovery once again.  I no longer use any of the prescription or illegal substances.  No oxys, no herion, no fentanyl – and no other recreational or illegal drugs.   I am in group therapy weekly and on Suboxone strips daily.  Suboxone is a maintenance medicine that blocks the effects of opiate drugs in my system and helps control my cravings / urges.  Its’ working very well for me.  How long I will have to take it I do not know.  Could be 2 years, could be longer.

One day I will be free of all of it.  THAT I know.  In the meantime, I am here, I am fighting the good fight and I am winning.  I made it this far for a reason, as to what that reason is  remains to be seen.

I hope you got something from this.  Even if it was just a little better understanding that addiction is a disease that some of us have to battle for whatever reason.  We’re not “bad” people.  We’re not “criminals” just because we use.  We are your family, your neighbors, your grocer, the guy at the gas station, your lawyer…maybe even you.

Be kind to one another, because you never know what another person is dealing with behind the scenes.

Peace & Love.  ~MainelyButch   aka Ang

 

World AIDS Day 2016

I have been HIV positive since at least 1992 when I tested positive. That’s over 25 years now and counting.  This makes me what they call a “long-term survivor.”–for which I am very thankful. Today was World AIDS Day 2016.  I, like millions of others, stopped to remember those who have been lost as well as those who are still courageously living and fighting this virus every day.And tonight I watched as they turned Niagara Falls red in remembrance. It was very cool.  I watched live on Rise Up Against HIV ‘s live Facebook broadcast.  I liked that I got to participate like that too. It’s always been such a somber day for me.  Many years ago I stood up in front of a large  crowd at the local church, holding my year old niece in my arms, and spoke about living with this virus and wondering whether I would live to see her graduate.  Well, she’s almost 23 now and a marine biologist in Florida.  Not only did I see her graduate high school but cover as well.  I have been blessed for sure.

I know I am one of the lucky ones. I was infected in the late 80s when the drugs to combat the virus were not that good or available.  My treatments early on were horrible. I often suffered with side effects from them and it was miserable.  But I lived. I lived to see this day where I now take 4 drugs once a day to keep myself undetectable.  Which means that no virus can be found in my blood at this time.  My treatment is working.  My t cells are in the mid-600 range and I am healthy as hell.  I’m certainly one of the lucky ones and I know it.  I don’t take this life for granted; I know I have been given a second chance. Today I remember all of those I lost.

I have been blessed with the love a d support of my wonderful family and friends.  This is another respect in which I consider myself very lucky as so many don’t have this kind d of support in their battle with this disease. I feel for them.  I don’t know how I would live without the support and love I get from my family especially.  They have stood by me solidly all these years.  Yes, I am one lucky Butch.

On another note…I am trying to write every day now.  It’s something I have challenged myself to do from now on.  I am in need of topics and questions from you my dear readers!  I want to know what you would like me to talk about in these blogs; what interests you, what can I write about?  Please leave your comments below or email me directly at Mainelybutch@yahoo.com at your leisure. 

Peace.  MB

Last of November

It’s that last day of November, wow has this month flown by!  It feels like just yesterday it was early September.  It’s raining here in Maine and it’s cold.  I am just thankful that it’s not snowing!  I know that snow is inevitable but the longer we go without it the happier I am.  

I’m off from work today and not positive of what my day has in store just yet.  It’s very early and I just got up about an hour ago.  Yes, I am a very early riser!  My body just won’t allow me to sleep past 5am. Sleep is overrated in my opinion anyway.  I feel like I am wasting time if I sleep too long in the mornings.

I have been watching the news reports of Trumpy’s cabinet choices and nominations.  It’s been a virtual who’s who of straight white men parading across his golden carpet.  Sickening  to think that the alt-right is going to gain so much MORE power in our country.  It angers me and makes me want to find a group of like minded people around my area to gather and discuss strategies for us all to be of support to each other and to react to the outrage I am sure is yet to come.  I feel the real need to be prepared to protect myself and others from things I can only imagine are in store for us all.  

Tomorrow is World AIDS Day 2016 around the globe.  The theme this year is Hands Up for #HIVPrevention. I was reading that the new push for self-testing will help to give people better access to testing and information on accessing treatment and prevention.  I don’t know about self testing…mitt seems to me that having a test done by someone who understands the ramifications should that person test positive.  And taking someone with you when you get test results is a good idea.  I went alone 25 years ago.  I remember it like it was outlast week.  It was the day I felt like I had an expiration date stamped on my forehead.  I didn’t hear mush after the woman who told me I was positive told me.  I started immediately to think of how I was going to ever tell my girlfriend and my loved ones. And I asked for a retest on the spot.  I had to make sure that there was no mistake. But there was no mistake and I have been living with this virus in my blood for over 25 years now. In the first few years I did a lot of outreach and prevention work trying to get others to not make my mistake and to protect themselves.  Nowadays I keep up on thing and concentrate on keeping myself healthy and happy with my second chance at life.   Before the availability of the medications that I take every day to stay healthy and virtually HIV free, I lost a lot of friends to AIDS.  At the height of the epidemic there was no good  oh gmail like there is today. If only we had moved faster when this started they might all still be alive.  I’m one of the lucky ones. I managed to stay alive, suffer through many failed treatment options and live to see this day where we now have the potent drugs needed to sustain a healthy life living with HIV.  

SO…I am truly thankful for my life and for all of the support I have in it. I feel like I am certainly blessed in so many ways.  Tomorrow I will pause to remember those who weren’t so lucky and those who we have lost, but I will also remember that this fight isn’t over until we find a cure and make it accessible to all of those who need it.  I shall light a candle of remembrance.  And I will thank God for giving me a second chance and a chance to make a difference in the world.