Me & Hep C: I Am Part of the Next Big Epidemic

Today I start Hepatitis C treatment.  Monday I learned that Hepatitis C (HCV) now kills more Americans every year than HIV. These two facts have inspired me to share a story with you today.  You already know I live with HCV, but what you might not know about is my personal connection to people living with HIV.

As I write this, I am realizing that in many ways this is really a story about life coming around full circle...

Helping Other People

Growing up, I always wanted to help other people.

For a while I thought becoming a doctor would be the way to do this.  When I didn't get straight A's in college, I shifted my focus to allied health professional careers and began to research a career in pharmacy.  Then I got cancer and my college studies got interrupted.

After I had the good fortune to beat cancer, I returned to school after a four quarter hiatus to finish my undergraduate degree.  I went back to planning for my future too.  Turns out, having cancer helped me discover the field of social work, which turned out to be a perfect fit for my childhood aspirations.

Facing Down Deadly HIV/AIDS

When I began social work school in 1990, I decided I wanted to work with persons living with HIV and AIDS.  Back then a lot of people didn't want to work with AIDS patients because of the stigma associated with this viral illness.  But I wanted to work with this group because I felt I had something to contribute since they were facing a lot of the same issues I had faced as a cancer patient. I strove to blend the knowledge from my personal experiences with my professional education to help make a difference in other people's lives.

This hard, challenging and important work really appealed to me.

I spent nine years working with people living with HIV.  I was there to witness the enormous change treatment with antivirals drugs made in 1995.  These new life-saving medications turned HIV infection from a progressive, life-threatening disease to a manageable, chronic illness.  With the new medications, my work became more about helping people figure out how to live their lives with HIV and less about helping them face their death because of it. 

Along the way, my clients taught me, pushed me and helped me evolve into one really good social worker.  For this I will always be truly thankful to them.

Now Hepatitis C is the New Killer

Today I know that Hepatitis C (HCV) kills more Americans every year than HIV.  Given my past with HIV and my present with HCV, that headline truly took my breath away.

First I got angry because:

• It's about damn time the medical community started understanding the true impact of HCV infection.  They know so much more about HIV than they know about HCV.
• It's about damn time more effort was put into a public health campaign to help people identify their risk factors and encourage them to get tested for HCV.  Look how well the public health campaign for HIV has worked.
• It's about damn time there are antiviral drugs for the treatment of HCV.  After all, antiviral drugs have been around since 1995 for HIV.
• It's about damn time the public understood the seriousness of the HCV epidemic and the toll it takes, in both lives and money, on our society. We all know how devastating HIV has been; why are we letting another virus do this to us again?

Then I took a moment to connect with my grief as I felt the impact of this news on me personally.  I am one of the 3.2 million Americans living with Hepatitis C.  But unlike so many others, I know my HCV status.  I know because I became sick with acute hepatitis after I contracted this infection.  Thankfully, this knowledge has informed a lot of healthy choices since 1988, choices I have made in the name of protecting my liver and doing what I can to prevent the progression of this liver disease. 

But even all these healthy choices haven't been enough to prevent HCV from quietly taking away pieces of my health over the past 24 years.

Coming Full Circle

Then I started thinking about my beloved social worker career, the one I was forced to give up almost eight years ago because chronic pain and fatigue disabled me.  I thought about my path leading to my social work career (which I described for you above.)  That got me wondering if someone today will be inspired by this recent news to seek out a career helping people living with HCV.  People like me.

The funny thing is, for years now, I have known that HCV was going to be the next big epidemic.  This recent headline finally confirms this.  Instead of an "I told you so!" moment, I can honestly say I was taken aback by the emotional impact this information is having on me. I feel shocked, overwhelmed and saddened by this news.

Most of all, I don't want to become a casualty of this war.  I don't want to be a HCV disability or death statistic.  So today I start Hepatitis C treatment secure in the knowledge that this is the right course of action for me right now.  And I'm giving this all I got because I want to beat HCV.  

Related articles

• Hepatitis C Now Killing More Americans than HIV (blogs.scientificamerican.com)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

Me and Hep C: How I Became HCV+

The dragon, Hepatitis C

To learn more about risk factors for HCV infection, please read the fact sheet Frequently Asked Questions About Hepatitis C courtesy of the HCV Advocate website.  I suggest downloading and printing this fact sheet, then taking it with you to your next doctor's appointment to help you begin the discussion about HCV with your health care provider.

To find an anonymous HCV testing facility in your community, call or visit the website for your local county health department or call your local 211 information and referral line (USA only.)

You can also purchase home HCV test kits, like this one from Drugstore.com:




Related articles

• Why I've Decided to Treat My Hepatitis C Infection Now (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

What Ever Happened to Miss Independent?

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To paraphrase a popular Kelly Clarkson song, I truly used to be:

Miss independent,
Miss self-sufficient.

Miss on her own,
Miss fully grown.

Miss unafraid,
Miss "Get out of my way!"
Miss "I can do it on my own."

Boy, do I miss those days!

I ordinarily don't bemoan my fate, but recently my spouse had a few moments of frustration, sadness and anger about my constant reliance upon him.  More specifically, he voiced his annoyance at having to do so much for me, so many things that I used to do on my own, so many things he wished I could still just do for myself.

This led to a long, late night talk about how truly bad things are for me.  I explained in great detail how chronic illness really affects me, making it so bad that this former Miss Independent needs to lean on her hubby for even the most basic things.  About half way through, tears creeped into my soliloquy as I got in touch with my feelings about all my losses and the grief that goes with them.  

It was a difficult conversation, but one that was needed to help my hubby grow in his acceptance of my chronic illnesses.  Since the talk, I can see he has let go of more of his angry feelings about my chronic illnesses and the things they deprive him of and impose upon him as well.

Two things I marveled at during this discussion:   

1. How different our timetables are for developing an acceptance that chronic illness is a part of our life together for the foreseeable future.
2. How my reality could really make me really depressed if I chose to constantly dwell on it. 

I can really see how much harder it is for a spouse, family member or friend to accept the consequences of chronic illness.  They view me through their frame of reference, which is the complete opposite of how I am physically feeling.  They have to imagine how it feels to be ill and how it can limit someone while they feel fine, have little pain and are full of energy.  I acknowledge that this is a tough task to accomplish, especially when you can never really know what having chronic illness is like unless you have it yourself--and I really don't wish that for anyone.

I also got in touch with how overwhelmed with sadness I become when I think about all the things I cannot do.  I can see where this focus might lead me down a dark and dreary path where I could be overcome by depression.  Which make me appreciate how functional it is for me to take the focus off my limitations and redirect it towards discovering what I can do.  I admit this was very difficult to do initially, but with practice this coping strategy becomes easier with time.   

Make no mistake: I am not living the life of my dreams.  But that isn't going to stop me from figuring out how to take what I have and make it into something worth living for.  I also have to remember that I need to share that with my husband, family and friends so they too can see that chronic illness isn't just about loss and sacrifice.  I have to show them it's about growth, change and new directions. 

Oh, and maybe finding some money in our very tight budget to hire someone to help me out around that house so my hubby doesn't always have to be my "go-to" guy.  As my caregiver, he gets overburdened at times and we need to find ways to help him out too.

So no, I am no longer Miss Independent.  I'm more like Miss "I Need a Little Help From My Friends" and Miss "I'm So Thankful for a Wonderful Husband Who Love Me No Matter What." That said, being more dependent is a BIG change for me, one that comes with many lessons to learn.  I'm not sure why I need this in my life right now and I can only hope that in the big picture it helps me become the person I am supposed to be.

With Each New Diagnosis...

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Today I realized what all these diagnoses of the various and numerous illnesses and diseases my body has had truly represent.

It struck me today how they symbolize the multitude of little deaths I have experienced in my life:

• The death of innocence.
• The death of invulnerability.
• The death of healthy.
  
• The death of normal.
  
• The death of plans and dreams.
  

In the novel that is my life, they are the antagonists that plague and torture me. They cause crisis and stir up trouble. They take away little bits of me and leave me forlorn and wanting. They bring about the ending to so many promising yet unfinished chapters. They are the demise of so many different versions of my character.

And yet, no matter how many times they break my heart, somehow each day I rise and face their challenges.

Admist the flames of the fire that each new diagnosis starts, I face new truths, learn new lessons, and stretch and expand beyond my former limits.

From the ashes I appear, reborn, stronger and fiercer that the last time. Each time I burn, my plummage gets more brilliant, with shades of deep purple, scarlett, green and blue. My tail is now solid gold and the song I sing is more beautiful and haunting than ever before.

I am the phoenix--for with each diagnosis I die just a little, and yet, with each diagnosis I am also reborn.

Such are the mysteries of life, my friends, such are the mysteries of life.

My Advice: The Best Approach to Getting Good Health Care

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As much as I wish it were not so, my life continues to be tied closely to the health care system. It amazes me that I am still surprised by this fact. Perhaps it is a small yet tenacious bit of denial on my part, seeing myself as a healthy chronically ill person. Since my cancer diagnosis back in 1988, I have said, "For a healthy person, I sure have a lot of health problems."

At this point, I admit that I can no longer keep track of all the doctors I have seen. I simply cannot tell you the number who have treated me. What I can tell you is my approach to working with medical providers. My bottom line: if I don't have a good working relationship with my doctor, I don't keep seeing them.

At their best, doctors work to end human suffering. In their finest hour, they save lives ... maybe even our life. They dedicate years of their lives learning how the human body works and how to treat all the illnesses and conditions that threaten us with disability and death. With advances in technology, chemistry and biology, they make the impossible happen on a daily basis.

But doctors are humans too. They make mistakes. They get distracted. They don't always listen to their patients or believe them when they report their symptoms. They sometimes get discouraged when the treatments they prescribe don't work. Sometimes they believe that their patients don't want to get better, or are causing their symptoms or are not taking their treatments as prescribed. Some get burned out and lose their ability to really care for their patients. Others get so frustrated they stop treating patients, forcing them to seek medical care elsewhere.

I know because these things have happened to me.

I try very hard to have empathy for doctors because I imagine it must be very hard to be one. Society puts them on a plane above most other human beings, turning them into gods. So much is expected of them that when they make a mistake it's called malpractice. I imagine it's a big job keeping up with all the medical research, let alone the long hours, being on call and the sheer number of patients needing to be seen.

As much as I want to give each doctor a chance to work with me and help me manage my multiple health problems, the reality is that not every doctor I see can help me. As much as I would almost be relieved to do "just as the doctor orders," I've learned that good health care is all about the relationship between the doctor and patient and working together to address health concerns. As much as I want to be completely and totally healthy, I know that for some of the things that ail me there is no curative course of treatment.

Yes, in this health care system, I am reluctantly the managing member of my health care team. Through much trial and error, I think I now know what I need to do to get my health care needs met. I've realized that for me to achieve my health related goals, I can't keep doctors on my team that aren't willing, able and interested in working collaboratively with me. I can't keep doctors on my team that can't admit when they don't know, can't help or make a mistake. I can't keep doctors on my team that are easily discouraged or take their frustration out on their patients.

Getting good health care takes a lot of work for patients too. It took me many appointments and a few years to finally find a team of doctors that truly works with me. I now reap the benefits of collaborative relationships with each of my doctors, which far outweighs the frustrations and discouragements encountered in the search to find them.

All the Things That Haunt Me

In brainstorming ideas for the NaBloPoMo October blogging theme of  haunted I came up with a list of things that truly do haunt me.  Before I get to the list, let me begin by defining what I mean when I say I am haunted.  The word haunt has many meanings, but the two definitions I am focused on in this post are:  

• being excessively and compulsively concerned about something.  
• showing emotional affliction or disquiet.  

I would not go as far as to suggest that the following items are ones I wring my hands over or ones that drowned me in emotional turmoil.  I do admit they are things I spent time thinking about with tinges of wonderment, worry, disquietude and consideration.  As I review this list, I know there are things on it that I can do something about and be proactive.  Others I just need to accept.  Some I need to learn lessons from and resolve myself not to repeat these thoughts and actions.  A few are just threads in the fabric of this mysterious and wonderful life, part of the human experience.


So without further ado, my list of things I am haunted by:

• I am haunted by my many illnesses.
• I am haunted by my lack of a normal functioning family, lovingly described as the "Family Curse" by my Aunt Sandy.
• I am haunted by "what if's?"
• I am haunted by the idea of past lives and reincarnation.
  
• I am haunted by my mistakes; not the little, everyday ones but the big, I'm-red-in-the-face, I-can't-believe-I-did-that ones.
• I am haunted by Death.  By then, aren't we all...
• I am haunted by the illusion of time.  It feels like we all have less then we want and yet we find ways to waste it more than we should!
• I am haunted the hopes, dreams and plans I had when I was younger that have gotten left out and left behind as I have gotten older.
• I am haunted by a critical inner voice.
• I am haunted by perfectionism.
• I am haunted by my choice to focus five years on taking care of my ill and dying parents instead of pursuing my desire to start a family of my own.
• I am haunted by the wreckage of the past, both my personal past and the collective human past.
• I am haunted by health concerns as I get older.  For example: Will I get Alzheimer's Disease like my father or colon cancer like my mother?  Will I have a heart attack or stroke like my grandparents?
• I am haunted by the desire to live up to this poem:

SUCCESS

by Ralph Waldo Emerson

To laugh often and much;
To win the respect of intelligent people and the affection of children;
To earn the appreciation of honest critics and endure the betrayal of false friends;
To appreciate beauty,
To find the best in others,
To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;
To know even one life has breathed easier because you have lived.
This is to have succeeded.

So what are some of the thing that haunt you?  Leave me a comment and let me know.

Health: My Life-Long Struggle

Image by heal and inspire via Flickr

I read the book Life on the Other Side: A Psychic's Guide to the Afterlife by Sylvia Browne several years ago. I picked it up on the discounted book table because I was intrigued by the title. I don't know if I really believe everything she has to say, but some of the concepts she presents in explaining her view of life, death and the afterlife are both appealing and comforting.

What resonated with me is the idea that we plan our lives on the Other Side before we get to life on planet Earth. In the process, we choose a primary theme and a secondary theme. The primary theme is the goal of our life and answers the question: what is my purpose in life? The secondary theme is the conflict we must overcome to fulfill our purpose. In the book, she provides a list of 49 common themes that people plan their lives around including: patience, justice, leader, healer, loner, catalyst, analyzer, poverty, survival and warrior. So, for example, your purpose might be to be a catalyst for change, but you need to learn patience in order to achieve your purpose.

To be honest, I am not sure what themes I chose for this lifetime, but I do know with absolute certainty which Option Line I chose. The Option Line is sort of like the major your picked when you went to college. The idea behind the option line is that, throughout your life, you struggle to gain mastery over this area. There are seven Option Lines: family, spirituality, health, love, social life, finance, career and family and I definitely think my Option Line is health.

I've lived several decades now and my health problems have been my constant companion. In fact, my health problems seems to have multiplied over time: one big life-threatening one in my 20s, one manageable in my 30s and a generous helping of several chronic ones in my 40s. Sylvia Browne says that knowing that your Option Line doesn't make the life-long struggle go away. The real challenge is learning how to counteract your Option Line so it will not prevent you from achieving your purpose in life (primary theme) or tackling the conflict (secondary theme) that makes achieving your purpose more meaningful and rewarding.

So learning how to live my best life despite my health problems sums up my lifelong struggle, my Option Line, in a nutshell.

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