FA LA LA LA NO NO NO NO, YES!

The holiday season is in full swing.  The first drop of snow for the season sprinkled New York City this week and store fronts are covered with evergreen-scented wreaths.  People flood Rockefeller Center to get their chance at ice skating in front of this years' Christmas tree display.  Even I put my own tree up while watching Frank Capra's, It's a Wonderful Life, in the hopes of getting immersed in the spirit of the holidays.  Unfortunately, I was unsuccessful and I think a large portion of it has to do with my exhaustion from this past year.

This week I was due for my quarterly blood drawings as well as refilling prescriptions.  With my "special" type of insurance those procedures involves more than one middle man on several different floors of this one particular building.  First, I have a wasted appointment, with my primary doctor, on the 6th Floor.  Simply because I physically sat in a room with the doctor permits him to write a referral to have me see my HIV specialist.  While waiting for my referral to schedule an appointment with the specialist (whose practice is 40 minutes away from this building) I sit in the lobby.  The receptionist is on the phone with the receptionist at the specialist's office who plans to fax over to my primary doctor the specific blood tests that will need to be drawn that day.  Twenty minutes later we receive the fax and I take the elevator to the Cellar Level where my blood will be drawn.  The lady stabs one of the largest veins in my left arm, removing six vials of blood and causing me to bleed profusely from the outside.  The bleeding finally stops when the medical assistant says to me, "every time you come here make sure you apply plenty of pressure."  I understand she was doing her job but that comment really upset me.  I wanted to say to her, "thanks for reminding me there is no cure to HIV and I have to succumb to this agony every three months." I guess I should be grateful that I am healthy and able to draw blood.

I take the elevator back to the 6th floor where the receptionist hands me the referral.  This piece of paper is my ticket to see the specialist who will (hopefully) tell me, "Everything looks great.  See you in a few months."  Lucky me that in a few months I get to do the entire procedure of riding elevators trying not to bleed on the tile, yet again.  Of course I must make the appointment first with my primary doctor or I won't be allowed to push the elevator button up to the 6th Floor.  Finally, I take the elevator to the third floor where I make sure my prescriptions are being filled for pickup the next day.  I laugh when I think how all of this could have been avoided if I was approved for ADAP.  I'd be able to see one doctor, go to one pharmacy, and work only one job.  I guess I should be grateful that I have some medical care at all.

I was running late for work the next morning.  I get off the subway a block away from my employment when I realized I'd forgotten my medicine at home.  I couldn't go back and get it and I couldn't tell work the truth.  (I am not open about my status at my day job.)  Missing a dose was like having unprotected sex.  You know it’s dangerous, you know you shouldn't do it.  Yet, I felt liberated, I smelled the fresh air.  It was comforting to pretend to be toxic free for just one morning.  My specialist once informed me what to do in this situation so I didn't panic.  I guess I should be grateful that I have options at all.   

Usually at work I roll up my sleeves exposing my forearms, however this day they needed to be covered.  The stab on my left arm had bled internally causing a huge blue stain on the surface (it was ugly.)  Every three months.  I did this not just so I would stop staring at the results of my past mistakes but just in case anyone at work saw the wound.  Meanwhile, this is a job where I've been here for many months and I still don't have a work badge like the rest of the staff.  Said badges have your profile picture and in my opinion it gives a sense of pride for the company we work for.  I know they appreciate my hard work, but it would be nice to finally be part of the team.  Not to mention their benefits package.  It is my main source of income and I can't be too expressive out of fear of losing my role.  I guess I should be grateful that I have a job at all.

I'm exhausted.  I'm exhausted being punished at work, by society, by the government and by my community that I have HIV.  I'm especially exhausted from punishing myself for being HIV positive.  My frustration caused me to pick at a scab on my thumb.  Naturally, blood begins to drip down my finger.  As I clean the hurt and see the infected blood on the tissue I think to myself, "Take that HIV!"  I know it may not be healthy to think about the HIV cells on the tissue dying because they can no longer spread in numbers, however when I used to bleed I would get freaked out by seeing my blood knowing what's inside it.  That damaged me more than anything.  Suddenly, the most remarkable thing happened to me as I dabbed my thumb.  The blood on the tissue was in the shape of a heart!  (I swear on my life I am not making this up.)  I smiled. 

In that instance I knew I wasn't alone in my office.  Someone, or something, is watching over me- over all of us.  I'm not a spiritual person in the sense that I attend a place of worship, but I am a firm believer that there is meaning to all this.  Perhaps after we die we'll understand why the world was destined to become acquainted with HIV.  Sure, I have my current struggles with exhaustion, work, medical frustrations and hardships, relationships, and life in general.  I have to remind myself that it will all be okay and it will all fall into place and someday, someday, the reason for giving me all of my struggles will be revealed.

Perhaps with that in mind I should take my tree down and put it back up again and get immersed in the Christmas spirit I cherished as a child.

I am so grateful for my life, no matter how hard it can be sometimes.  Merry Christmas life and here’s to a happy and prosperous New Year and many more to come! 

BEING RESPONSIBLE IS IRRESPONSIBLE

At least that is what I'm starting to believe in our country.  I'm a responsible citizen: I pay my taxes, I bring home an honest paycheck, I take care of my heath, I volunteer, I even vote.  However, I am starting to understand that trying to stay ahead and doing the right thing is working against me.

Let me explain.  I work a full time job through a temp agency.  The agency has an extremely limited benefits package that will not cover my specific HIV medical needs.  I also work part time at night at a hotel of which is my only medical coverage.  This part time gig is a union job.  Regardless of your opinion of unions I will say this: I believe unions are necessary solely for the purpose of employers and employees having equal opportunity in an environment that would have otherwise.  Sure, there are abuses on both sides, but I digress.  My union benefits differ from regular medical benefits in a number of ways.  I cannot choose my medical care.  Instead, it is required that I see their doctors and their specialists in order to be covered.  The problem with that is that it can take as little as a few months to see a doctor for a sore throat.  Their response is if you need to seek help go to the emergency room.  Being HIV positive and required to submit bloodwork every three months in addition to my primary care follow up of said work, it is a necessity that I am able to schedule my appointments in a reasonable matter.  Of course there is no HIV specialist under my medical plan.  Finally, if I want to see a specialist not only would I need a referral to see that specialist (every time I need to see him), but I would also need a referral to get bloodwork drawn (again, every time I need it done.)

For the time being, I have been paying for my blood work as well as my doctor visits out of pocket.  Thousands of dollars later and I still owe a significant amount.  Unfortunately, until we find a cure, or I quit my jobs all together, this cycle will have no end.  Naturally, I can see how the world outside of HIV take this illness less and less seriously given your "once-a-day" medications and living longer lives.  This side of the epidemic isn't spoken about enough to the general public.  I've had endless meetings with social workers over months on end.  It has come to the point where I have pleaded with them with what I should do.  "Give me an ultimatum," I say. 

Scenario One: IF I quit my part time job and have no medical benefits I will qualify for New York's ADAP (Aids Drug Assistance Program.)  Consequence to Scenario One: my income will be significantly less and I may be forced to leave my home and move back in with my parents.  My temp job is above the poverty level, but just enough to barely make ends meat, so I don't qualify for government assistance.  Food will become a luxury.  My parents live outside New York City, and our state is under the radar for falling into the ADAP "waiting list" category.  For further information regarding ADAP and the waiting lists (if there is one in your state) and what you could do to help, click on the website here: http://www.adapadvocacyassociation.org/ 

Scenario Two: IF I keep both my jobs I will not qualify for ADAP.  Consequence to Scenario Two: Not only will I run myself down with fatigue working 60 hours a week like I currently do, but I will somehow have to conjur up $750 every three months.  At least my medicine is still covered with my current part time job.  That is, they haven't questioned my prescriptions at this point.  Praise be to God that I don't have to ever pay for my medications out of pocket.  Seeing how much each individual pill costs turns my olive skin to snow white.

There should be a law of some sort where employers only have a certain time frame to decide whether or not they'd like add a temp employee to payroll.  There should be consquences should they string hardworking professionals along.  Maybe there is, but I doubt it. 

I haven't reached my offical one year mark being HIV positive and I'm already exhausted.  I'm tired of closed doors and "we can't help you" answers.  I try to do the right thing by working hard and paying my dues with no end in sight.  I was once taught to aspire to a world with a house and a white picket fence and landscaped gardens.  For all the Americans on waiting lists, live hours and hours away from medical care or try to do the right thing and still get spit on like me I say this: even in a metropolis like New York City, you can feel alone.

We really are all in this, together.