Monday, August 29, 2011

Dating with HIV; my experience and thoughts

I am now 18 months post my dual diagnosis of HIV and Hepatitis C, and 9 months post successful Hepatitis C treatment. I thought it was time to meet someone; no, not just for sex, but for something more.  You see since my dual diagnosis I have felt completely a-sexual, and I’ll admit, feeling a bit ‘tainted’ too.  Even HIV + guys are hesitant to meet me when I tell them I also ‘had’ Hepatitis C.
So, wonderful, where does that put me in the dating scene?  Someone would really have to be desperate to meet me!  Recently I met someone by the name of ‘Dustin’. He smoked, and I said I would NEVER date a smoker, but I have been desperate to make a connection with another positive individual.  I thought I could ignore the smoke.  He was handsome, professional, similar in age, and a sweet talker, among, *uhm, other things….
I hear the knock on the door, I’m a bit nervous, I look through the blinds (pictures match), and open the door to meet him.  He reeked of smoke. We had some drinks, but all I could smell was the smoke emanating from him.  Almost immediately I had withdrawn all interest, and my body language turned very cold. He got the hint, and excused himself.
I’ve met one other person since that night, and a non-smoker! While the physical connection was there, I couldn’t allow myself to open up. Again, my body language turned cold, and he too left. Why am I having such difficulty meeting people, why can’t I open up, why does my body language turn so cold, why can’t I let anyone in? Before HIV I always had fear of rejection, having HIV compounds this fear.  I feel like damaged goods.
I am also stuck in the mindset that I would never date anyone who is HIV negative, and think how could I ever be in a serodiscordant relationship? I would not want to give to someone else what I have, no matter how small the chance. I wouldn’t wish HIV on anyone. I know that limits the pool of potentials as well.  Since day one of my diagnosis I made a commitment to myself to always disclose my HIV status when it comes to dating, maybe this is my dilemma?
I’ve allowed my emotions over my status dictate my single life. I had withdrawn and isolated from the World. I am trying to slowly build the confidence again to meet someone, and crawl out from under the shadows of my illness. As alone as I feel with my diagnosis; I hold out hope. I have been in three relationships prior to my HIV diagnosis, and one for over 2 years. I’ve traveled the world, been on many adventures, have a creative and intellectual mindset, caring, kind, honest, and have a super loveable personality. 
I keep the hope of meeting someone, because I know that really loving someone means loving them for who they are and accepting the whole package.  I guess you would call that a soul-mate and I believe that person is out there somewhere.  So, today I make a commitment to myself to never settle for less than my heart’s desire. And to anyone reading this with HIV/AIDS or any other chronic illness; YOU deserve to be treated with love, kindness, sensitivity and respect and YOU shouldn’t settle for less.  
Usually I am the one to offer tips and advice, but when it comes to dating and HIV I feel hopeless. I hope whoever is reading this will chime in.  Are you in a relationship? How long have you been together? How did you meet? How long after your diagnosis did you feel comfortable seriously dating someone?  Until next time….

Sexless in Seattle,

Kevin Maloney

Thursday, August 11, 2011

The Department of HHS responds to my letter regarding the ADAP crisis

I had sent a letter to the President, Secretary Sebelius and the Presidents Director of AIDS Policy Jeff Crowley with regard to the ADAP (AIDS drug assistance program)crisis. Today I received a letter in the mail from the Department of Health and Human Services regarding my letter (see below).

As of Aug 5th via the website of the ADAP Advocacy Assosciation; 9,039 individuals in 13 states are waiting to receive life saving medications.

click on letter to enlarge

Tuesday, August 9, 2011

"We Walk" A piece I wrote inspired by the horrific famine gripping the Horn of Africa

We walk into the future, not knowing where our next steps may take us. We walk hoping that next step will bring us closer towards food, water, shelter, safety, medical care, and a bit of HOPE. We walk because that is how we keep going. We walk with no shoes, in the scorching heat, and for long distances, far away from our homes, and into the darkest hours of the night. We walk leaving behind our children who have lost their lives to the famine. We walk to honor our dead. For 30 days and 30 nights we walked until we made our way to the refugee camp. Malnourished and dehydrated and on the brink of death we walked, our eyes and cheeks sunken in, ribs showing, the anguish on our faces. We walked, we made it for now, and we will walk again.

Don’t become expendable! Pause, reflect, and move confidentially into the direction of your dreams!

If life is moving too fast or too slow, or you are traveling down an uncertain path; hit the pause button.  It’s time to reflect on where you have been, where you are at right now, and where you want to be.  Too many people get stuck in that ‘perpetual rut’ in life.  I have experienced that rut in life a handful of times, so believe me when I say, I understand.  Fortunately, I’ve always found a way to lift myself from the ruts. 
Unfortunately, for most it’s not as easy. You really have to believe in yourself, make sacrifices, take calculated risks, ask for help, and envision where you want to be.  When you’re ready you can begin to create the change you desire.  Instead of just being alive, it’s time to start LIVING!
Are you in an unhappy marriage?  Has your job become mundane and not challenging enough? Have you restarted unhealthy habits, or picked up new ones?  Are you living where you want to be?  Are you as healthy as you want to be?  Is life passing you by, while you sit on the sidelines?  Are you disappointed in some of your life choices?  Are you depressed?  If you answered yes to any of these questions, then you have reason to pause and reflect.
I remember when I had a job in a call center.  I was one of the youngest in the office. I was surrounded by miserable middle aged woman who complained every day about some aspect of their life AND job.  In looking deeper into these women I found that this job and others like it were the only jobs that most have ever had.  They had seniority in the industry and familiarity in their position.  They had achieved something, they built a career.  They were deeply dug into that rut.  For many, with seniority comes an inherent feeling of self-righteousness over those beneath them.  Many of the most senior had also become complacent in their job duties. They felt un-expendable, but were they?
I am not knocking these women; they were doing what they needed to get by and survive, to pay their bills and provide for their families. They were kind bunch that took me under their wings. I learned a lot from them. However, it was a depressing work environment, and I needed a change.  I didn’t want to get stuck in the rut and become a miserable middle aged man, mad at myself for not making the move when I could.  I needed a new challenge and a change of venue.
Fortunately, I had options. I had gone to school, and earned my bachelor’s degree.  I was more employable than the women in the cubicles next to me, who never furthered their education.  I was younger, well spoken, and cleaned up pretty good.  I excelled at my job and received many accolades and awards.  I had confidence in my abilities. I applied for a new job in a different city. To my surprise (as these jobs go very senior) I got the job and left Fort Lauderdale, FL for New York City.
With the economy beginning to tank soon after I took my new position I was worried.  My company began a HUGE layoff.  My job was sparred, but many in that call center I had been working in lost their job. Those who were very senior were in jeopardy, because for the first time the company measured seniority AND performance goals when deciding who to let go.  Some of the most senior individuals of the company were let go.  Mostly some of the self-righteous ones I mentioned above who had become complacent in their job duties.  They were expendable after all.   Though, as time went on, most were hired back into new positions, but at lower pay.  Luckily I got out in the ‘nick of time’.
It took some calculated risk, foresight, believing in myself, and making some sacrifices living in a high cost city, along with a bit of help along the way; but in the end I achieved what I wanted.  I got out of the rut. You can too!

Below are some tips to help you through the process so you can begin LIVING again and moving into the direction of your dreams. 
1)      Assess everything in your life: job, family life, marriage, location, debt, sex life; the list is endless.
2)      Pause and reflect on these aspects and write them all down.
3)      Draw a smiley face or sad face next to all the aspects you have chosen.
4)      Be completely honest with yourself.
5)      Eliminate the smiley faces, and focus on the sad ones. No half smiles! If you have to think too much about it then it gets a sad face.
6)      Identify 2-3 ways you can help to turn the frowns upside down!  
7)      Begin taking action immediately; take no more than a month to try to change the frowns
8)      If after a month you are still sad, it’s time to implement some serious change.
9)       Calculate risk; financial, familial, moving, going back to school, changing careers; what do you have to gain, what do you have to lose?
10)   Make the tough decisions and follow through.

After you have calculated the risk, done some forward thinking, and realized the sacrifices you will undoubtedly need to make; it’s time to take that leap of faith.  Your new life a waits!

Kevin Maloney
Twitter @RiseUpToHIV

Thursday, August 4, 2011

Ten suggestions, tips, and encouragement for someone newly diagnosed with HIV/AIDS

In light of the news lately that 3 out of 4 people diagnosed with HIV are not in care, or flipping that statistic this means ONLY 1 in 4 people diagnosed with HIV are receiving care.  Starting to treat your HIV is not only important to stop the replication of the virus in your system before being diagnosed with AIDS, it's also important so that you are less likely to spread the virus to others.  Given these reports I feel it is neccessary to re-visit this blog entry.

So, you just found out you are HIV positive. What do you do now?  It can be a very scary time, and you will undoubtedly have MANY questions.  The diagnosis may have caught you completely off guard, or maybe you have subcommand to the possibility, and already have been emotionally preparing for this day.  In either case, don’t beat yourself up.  Try to stay calm and rational. Don’t put the horse in front of the carriage! Don’t hide away ashamed of your status, and go untreated.  

It’s important to take a proactive approach from day one of your diagnosis.  If you’ve been traveling down a self-destructive path, now is a good time to reflect and begin working towards a neutral and upward path in life.  Your life is not over with HIV.  With today’s medicine you can live to be a ripe old age. Life happens, and sometimes bad things happen to good people.  
There are certain steps you need to take to begin addressing your HIV/AIDS diagnosis. I’ve listed my recommendations as well as some tips below.   I did all of this on my own, but now realize how important it is to work with a case manager.  Case managers are invaluable assets to those of us living with HIV/AIDS.  They can offer you guidance, especially in the early days of your diagnosis. 
1)      Find an ASO (AIDS Services Organization)
From here you will be set up with a case manager who will assess your needs and address any concerns or questions you may have about your new diagnosis.  To assist in this process I suggest to Google your closest ASO (AIDS service organization). The case workers at these federal and state funded organizations WILL be invaluable to you in your early days of your diagnosis, and will support you for as long as you need them too.  When you enter these organizations you are treated with dignity and respect, and will be pointed in the direction of invaluable resources. 
2)      Find a doctor
Your case manager at the ASO can recommend an infectious disease doctor or a doctor whose credentials state they are an HIV specialist.  You may even know a friend or two with HIV; ask them who their doctor is. Keep your primary care doctor for simple colds and other issues not handled by your “HIV doctor”

3)      Treat underlying conditions 
Have you been struggling with a substance abuse issue? Maybe you have been struggling with an addiction to crystal meth, cocaine, heroin, crack, or alcohol? Your case manager can provide substance abuse referrals, either to an outpatient facility or an inpatient one.  Maybe you have other mental health concerns that need to be addressed?  This could be a good time to address these too.

4)      Seek support  
You will need the support now more than ever from close friends and family. You may even want to seek the help of a talk therapist (psychologist).  Again, your case manager can recommend experienced psychologists in your area. If you are uncomfortable going to your friends and family for support.  Also look to the right of this blog for supportive resources. Your case manager can also link you up with support groups in your area. It’s important to stay connected with other individuals who understand, whove been there and can offer you advice. Join for incredible online social support, and search for groups on facebook to join, such as the International Place for people with HIV/AIDS, and the people who love us. Also join my facebook page and twitter account you can find at the bottom of this page that will also point you in the direction of more resources.

5)      Check work benefits
If you’re working and work in the United States your company is required to have an FMLA (Family Medical Leave Act) policy. This is a federal act that gives you time off to take care of yourself or a loved one.  Some companies will pay you while on FMLA, some don’t.  Check out your companies leave policy, find out how much sick, and vacation time you've accrued.  Having these benefits can be a great safety net and give you time to deal with your diagnosis, especially when first diagnosed, and to get to subsequent medical appointments.
6)    Starting Meds 
Consider beginning medicine to treat your HIV; check out the latest medicine guide to familiarize yourself with the medications to treat HIV.  Starting meds is a personal choice; and should be a team decision between yourself and your doctor.  As part of your intial labs your doctor will run a lab profile to see if your immune to any of the current medications. The most common side effects people report in the beggining are fatigue, and insomnia, and sometime vivid dreams, depending on the medicine you and your doctor choose Thankfully medications to treat HIV have evolved, and are not as harsh on the body as they used to be.  

7)    Paying for HIV Medication 
If you have NO insurance, or inadequate insurance your case manager can help sign you up for programs that can help with the high cost of your HIV medications. One such program is ADAP (AIDS Drug Assistance Program) or PAPs (Patient Assistance Programs).  Depending on your eligibility you may be able to have your HIV meds paid for fully. In other instances where you do not qualify for ADAP or PAPs , but have private insurance their are ways to help with whatever co-pays you may incur or yearly insurance spend downs you need to meet. Click here for resources to help with insurance spend downs,  such as co-pay assistance programs administered through the drug companies. It's no secret that HIV medication is very expensive, and if diagnosed in January-March, and do not qualify for ADAP you will be faced with the full amount of your spend down.  This happened to me when I was first diagnosed!

8)     Ask questions and Follow up
Write down your questions before your visit. List the most important ones first to make sure they get asked and answered. Follow up with all of your lab work. Ask for copies and keep them in an organized folder. This way you can compare numbers from last visits. Don't assume if something is wrong, your doctor will tell you. While your doctor will stay on top of your health, again it's important to be an active participant and advocate for your own health.  Tip:  Ask if your doctor has an e mail that you can send questions to when they arise. Another tip: Nowadays your medical office may be set up electronically, whereby you create a user name and password and will be able to log into your medical records and see all your test results.

9)    Tell your doctor everything
It’s important to tell your doctor everything.  Even if it makes you feel embarrassed or uncomfortable.  The single most important way you can stay healthy is to be an active participant in your own health. Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care, and have better results!

10)   Get involved and stay connected
By now, you have come a long way, and all of the above info you can pass along. For those reading this, and who have been in care for a while, you probably think this post is overwhelming.  When I re-read it I think how time consuming the process was, but that it eventually became just that, a process. A coordinate processs that you will become accustomed to.

Once you’ve come to terms with your diagnosis you may want to share your story, so that others who have been through what you have gone through can relate and find some comfort.  You can do this by beginning a blog, writing a guest blog entry on someone else’s website,  speaking at schools and other speaking engagements, advocating, or just simply connecting with others online and offline.  Just telling someone who has been newly diagnosed, that you are not alone, can go a long way!
Remember your life is not over with HIV.  After some time you will find that everything mentioned above will fall into place, and will become routine. While HIV is NOT a death sentence like it once used to be, it is a LIFE sentence.   HIV is now considered a manageable disease that you’ll hear relatable to diabetes.  Every 3-6 months you’ll need to see your doctor and have lab work done.  You’ll need to take your medications morning and/or night and try not to miss a dose. Many have found a “new life” after being diagnosed with HIV.  You are not a lone, and WILL be ok!
Remember, your still Human, LOVEABLE, and WORTH IT.  Never give up HOPE.
Your friend LIVING with HIV, (cured hepatitis c nov 15th, 2010)
Please feel free to reach out to me and I will help as much as I can!! 

Be well my friend,  
Kevin Maloney
My Story

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