Wednesday, May 10, 2017

My "Chemo"

I once told my brother Tom..."Don't be so positive that you're an asshole"...It was a tough time for me in a hospital...but the moment of brevity caught us all off guard and a good memory was born in illness with a good laugh that can be so healing.  Some days I hide a lot.  I've learned to lie about not my illness but how it really effects me.  I'm not sure if I do anyone justice some-days hiding the "ugly".  For the most part I am hiding from my self in that regards.  But aren't we all in some way...
The truth is the medications I take are brutal but they keep me alive...quite literally and there's a lot more to it than just my life.

This is my "chemo therapy"...Drugs so toxic they wouldn't normally be allowed...but people with HIV have to make tough choices...Not unlike those chemo therapy patients today.
Not only does this drug "keep me alive", but not surprisingly the real truth is the reason I do it is I believe it is my responsibility.

You see these drugs remove most of the virus in my body making it nearly impossible to spread the virus. It doesn't "CURE" it...but it lowers the VIRAL LOAD.  For me that allows my body to work on rebuilding my immune system.  Six years ago I had ONE T CELL...Today I have 336...The average person around 1500...It is a slow but deliberate marathon, if you can fight off the other things your immune system "wakes up" to find...It actually gives you the best shot at a "normal" existence...all be it loaded with side effects.  We do choose our battles...dont we?
I realize I am typically the "POSITIVE" thinker...and I am...but I do not any longer want to hinder the real truths about this disease with positivity that's misdirected or misleading...there are significant issues with these medications and I think it needs to be talked about.
but for the is why I choose to take the medications...In a nut pun intended.

New Proof That Passing On HIV While Undetectable Is Very Unlikely

"A major study examining how antiretrovirals (ARVs) reduce the risk of HIV transmission among heterosexuals has found that no participant with a fully suppressed viral load infected his or her long-term HIV-negative partner. " 


In case you missed that little bit of says if all hiv infected peoples viral loads were supressed we could end the very disease...and quick...
 But today, like nearly every day I ponder the statistic that nearly 70% of the HIV infected population isn't on this medication. Of course we could also mention the nasty truth about the possibility that 60% of all HIV infected...DONT EVEN KNOW YET....whaaaaat....????
There are a good number of reasons I am sure that one isn't on these meds I am sure .  Then there is the $$$$$$....

These two drugs every month cost my insurance company $1,800 and $3,400 respectively.  My deductibles are $500 per medicine...Yea...a $1,000 per month or I am dead in three months...but worse...I would be INFECTIOUS....I will just let this sink in for a bit...

Then there is the side effects...bad ones...there isn't a day that goes by that I don't wish I didn't have this toxic shit running through me...I wrestle with it honestly...but I still know its the right thing to do....

But here are the real truths behind why some people don't take them...These nasty SIDE EFFECTS and their long term effects quite honestly just aren't known..They just haven't been around that long.....but there's whispers of it....Doctors will "monitor" it but most really wont talk about it...unless you experience symptoms.

I don't normally look at these things before I take any medications...too much power in the placebo for minds too strongly effected by my thoughts.  But today after several years I looked at them... I wasn't shocked to see numerous synchronicity's in my current health affairs....I don't complain about them all to Doctors anymore. It is hard to choose your battles on this front honestly.  But I try and listen to my gut.  When things start interfering with my normal day. That's when I wrestle. The rest I try to just live with.  If it means some days I use a be it...but I still keep going.
I have given up a number of things because my body just cant do it any longer. Days upon days have been lost and for a guy that's been on the go all his life.  It is STILL difficult for me.  These medications are a major contributor...But I still feel the responsibility to lower my viral load to undetectable a larger aint so bad either...dont get me wrong. I still have things to do...and for those of you that have read my book you will understand when I tell you...I believe THEY ARE ALL IMPORTANT... 

but here are some realities for people living everyday with the medications to treat HIV/Aids...God bless each and every one of you for the nightmare you swallow everyday..May the peace of the breath of life it gives you warm you and those around you....I don't wanna be tough about the medications or negative...but it is time to be honest about the battles I choose everyday...they are real and I am not alone...For those on these meds feel free to check out this article on switching medications to see if it might be right for me.
 I realize the options are limited but I do believe there are ways to minimize the effects with the right combination...Don't give up believing....Don't give up learning...and never let STIGMA or shame stop you....

as always, I remain Grateful for each new day....
and the RESPONSIBILITY that goes with it.

I hope our continued efforts to educate you on the real world of living with hiv helps...
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Truvada Side Effects

As well as its needed effects, emtricitabine / tenofovir may cause unwanted side effects that require medical attention.

Major Side Effects

If any of the following side effects occur while taking emtricitabine / tenofovir, check with your doctor immediately:
Less common:
  • Blisters under the skin
  • rash with flat lesions or small raised lesions on the skin
  • redness of the skin
  • skin rash, itching skin, hives or welts
  • spots on your skin resembling a blister or pimple
  • Blindness or vision changes
  • burning of the face or mouth
  • burning, crawling, itching, numbness, painful, prickling, "pins and needles", or tingling feelings in the hands, arms, feet, or legs
  • chest pain
  • clumsiness or unsteadiness
  • sensation of pins and needles
  • sneezing
  • sore throat
  • stabbing pain
  • weakness in the hands or feet
Incidence not known:
  • Abdominal or stomach discomfort
  • agitation
  • bloating
  • bloody or cloudy urine
  • bone pain
  • chills
  • coma
  • confusion
  • constipation
  • convulsions or seizures
  • cough
  • darkened urine
  • decreased appetite
  • decreased frequency or amount of urine
  • depression
  • diarrhea
  • difficult or labored breathing
  • difficult or painful urination
  • difficulty with swallowing
  • dizziness
  • fast heartbeat
  • fast, shallow breathing
  • fever
  • general feeling of discomfort
  • headache
  • hostility
  • increase in the amount of urine
  • increased blood pressure
  • increased thirst
  • indigestion
  • irritability
  • lethargy
  • loss of appetite
  • lower back or side pain
  • muscle pain or cramping
  • muscle twitching
  • nausea
  • pains in the stomach, side, or abdomen, possibly radiating to the back
  • puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
  • rapid weight gain
  • sleepiness
  • stupor
  • sudden decrease in the amount of urine
  • swelling of the face, fingers, hands, lower legs, or ankles
  • tightness in the chest
  • unusual tiredness or weakness
  • vomiting
  • weight gain
  • yellow eyes or skin

Minor Side Effects

Some emtricitabine / tenofovir side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:
Less common:
  • Lack or loss of strength
  • passing of gas
  • weight loss
  • Acid or sour stomach
  • back pain
  • belching
  • difficulty with moving
  • discouragement
  • feeling sad or empty
  • heartburn
  • increased cough
  • joint pain
  • loss of interest or pleasure
  • muscle aching or cramping
  • muscle pain or stiffness
  • pain
  • runny nose
  • stomach upset
  • stuffy nose
  • sweating
  • swollen joints
  • tiredness
  • trouble concentrating
  • trouble sleeping

Tivicay Side Effects

Tivicay (dolutegravir) is an antiviral medicine that prevents human immunodeficiency virus (HIV) from multiplying in your body. Tivicay is used with other antiviral medications to treat HIV, the virus that can cause the acquired immunodeficiency syndrome (AIDS). Tivicay is not a cure for HIV or AIDS....

Major Side Effects

If any of the following side effects occur while taking dolutegravir, check with your doctor immediately:
Less common:
  • Black, tarry stools
  • blistering or peeling skin
  • bloody urine
  • burning, dry, or itching eyes
  • chest pain
  • chills
  • cough
  • dark urine
  • decreased frequency or amount of urine
  • discharge or excessive tearing
  • fever
  • general feeling of discomfort or illness
  • general tiredness and weakness
  • increased thirst
  • large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
  • light-colored stools
  • loss of appetite
  • lower back or side pain
  • muscle or joint aches
  • nausea and vomiting
  • painful or difficult urination
  • rash with fever
  • redness, pain, swelling of the eye, eyelid, or inner lining of the eyelid
  • severe rash
  • sore throat
  • sores, ulcers, or white spots on the lips or in the mouth
  • swelling of the face, fingers, or lower legs
  • swollen glands
  • troubled breathing
  • unusual bleeding or bruising
  • unusual tiredness or weakness
  • upper right abdominal or stomach pain
  • weight gain
  • yellow eyes and skin

Minor Side Effects

Some dolutegravir side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:
Less common:
  • Abdominal or stomach pain or discomfort
  • headache
  • itching skin
  • trouble sleeping
  • Abnormal dreams
  • diarrhea
  • dizziness



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  1. Wow! Have you tried anything natural? I am so anti- the poisons they call chemotherapy. And enriching the terrible Pharmaceuticals; that really don't care if you live or die, just that they make their money. There's a wonderful series: The truth about Cancer by Ty Bollinger. You should check it out. Most cancer patients die from the so-called side effects, which are really the effects of the drug that are inconvenient to talk about.

  2. Thank you I will check that out...I always love to learn something new...but you are right...i have pushed back against meds for the most part...although the ones I still believe in still
    My body has also pushed back and now Im allergic to almost all antibiotics...Ironically I have 1/3 on a normal immune system...but I keep going...Takes more than meds for sure...Thanks for the comment and thoughts...hope your day is fabulous