I am Jenny's Liver; my Hep c experience

Final Thoughts and the Future

2012-05-30T20:30:00.000-07:00

Hello Everyone,
After much consideration I have decided I no longer have the time to contribute to this blog on a regular basis, at least not in a way that can be consistently useful My energies in the Hep c community are better utilized by participating in support groups and my continuing to do outreach and education within my community. I am enclosing a video blog as my parting message and I do hope you will utilize the resources I have posted in the links section.
Also please do make use of the items I have posted over the past 2 years and do feel free to add comments, questions or feedback as updates will continue to be forwarded to my email account.
I wish you all well on your journey with this disease and hopefully on the pathway to a cure.
Health and Blessings,
Jenny

© 2010-2012 Jennifer Hazard

Personal Introduction and Video Blog 1

2012-03-18T22:42:00.000-07:00

hello all, I am exploring the brave new world of video blogging! As much as I enjoy the written word, I also feel that forums that are designed to offer support and personal experience can benefit from a more intimate connection. Putting a face and a voice to the words makes us feel more accessible and authentic, in my opinion. I do hope this proves to be the case. I'm also, personally, enjoying experimenting with this new medium, and now that I have a new laptop which makes the process much easier I'm finding it to be quite a bit of fun. I hope my words can offer some support, and provide a sense that you, my viewers are not alone! I am always open to feedback, questions and suggestions which can be added in the comments section below. So please feel free to respond, let me know what's working, what could be improved and please offer ideas for topics you'd like to have discussed in future posts.
Wishing you all good health, loving friendships and courage on your journey!
Peace,
Jenny

© 2010-2012 Jennifer Hazard

365 Days and In The Groove

2012-03-12T23:57:00.000-07:00

Another Milestone along the winding road. A rest stop we make now and again, once our treatment has been completed. Pull over on the left, look both ways, pull into the scenic overlook of Dr C.s office. You must pay toll fees in the amount of 8 or 9 vials of blood before entering. Sign some papers and wait for the next road trip to the office. In between paying the toll you are not certain how to proceed. Stuck on the slow lane, reviewing in your mind the many possible paths that lie ahead, but without a road map or GPS, and even if you had these tools you don't know which one's you'll be able to use until you know what's in that blood.
Finally after a week of bumping around in the disabled lane, you get the call, start your engines, and off the the Doc's office you go.
Or, it happens like this; The phone rings and thanks to cel phone technology you know it the Doc calling. You take a deep breath before answering..."Hello?"
"Hello Jenny, how are you feeling?" something in her voice leads me to believe I should say "bad". I don't feel bad, however, I feel great and I tell her so.
"Well then we need to recheck your blood work"
"okaaay, later this wee..."
"No today"
damn
"Um is everything okay? Is the virus back?"
"We haven't even gotten the results of the viral count yet but .....blah blah blah" she goes on to essentially tell me that according to my bloodwork I should be hastily jotting my final wishes on a notebook while on my way to the hospital.
By now I'm pretty sure the color is drained from my face, my voice is a mere whisper and I am beginning to feel like I probably am critically ill. The Usual Suspects of lethal symptoms begin to appear. You know the ones that can be caused by anything from a high fat lunch to Dengue fever.
Zoom back to the hospital, fast lane this time, pay the toll, 8 more vials and because these things only happen on Fridays, return home to spend the weekend wondering if I'm dying.
Monday finally decides to roll it's casual self around and I'm dialing the phone at 8:01 am. About three hours and 5 phone calls later I finally get the report that there must have been some mistake because just about everything is perfectly normal and, wait for it.....the virus is still undetectable!
I felt pretty confident at the 6 month point that I was going to remain undetectable, but I'm the kind of person who wants just that extra bit of reassurance.
Funny thing is, until more is known about this disease, I will most likely be paying toll once a year to maintain that bit of reassurance. When my non-hep friends ask me if this means I'm clear forever, I'm still not sure what to tell them, except "probably". I've not heard of people relapsing after a year, but I've never been told that it's impossible either.
My one year post treatment pit stop was about two months ago now, and I am feeling good. I mean I am feeling healthy. Looking back over the past year I can say in retrospect it has taken the better part of the past year to gradually restore myself, my complete self. I can look back and see how every aspect of my life was affected by treatment. Some parts heal more slowly than others. Some parts rely on other parts to get stronger before they can even begin to heal. The physical body, much as it represents us to the rest of the world and carries us around as our container, is the hardest hit and the first to need repair. But the body heals in increments, once it reaches a point where it can sustain some energy and movement, we begin to reintegrate into some of our daily activities, and that's when we realize that the old brain hasn't quite caught up yet. We go out for a social event and can't remember half the names of people we encounter. This gets the emotions a little distressed, and then we can't quite decide what we want to do, early show or late show? Comedy or drama? It feels impossible to think what we want, to decide based on what we feel isn't helping either because our emotions are subject to change at any given moment. Socially, whatever company we are in, no matter how patient and loving is probably just a little bit frustrated with the impossible task of trying to give this woman a good time out on the town. By now we are so exhausted, we don't even want a time out on the town, good or otherwise and retreat home to our now familiar bed.
Gradually our stamina increases and along with it our problem solving and decision making capacities re emerge, and because of this we feel better about ourselves emotionally which prompts us to care for our physical self more tenderly and lovingly and the cycle goes on. It's an interpretive dance of sorts between all the parts of our selves as we repair and restore. Like most dances, it moves slowly at times, flowing in order to find some sort of groove and then faster and more agile, until the body needs rest. We continue our dance which was at first awkward and uncertain until finally at some point along we are in the groove. Does it mean we are out of the woods? Who knows? Someday that little bit of liver damage could throw us off step. Or we could be one of those one in whatever million people who mysteriously relapses. I don't have those answers, but I do know that we all have been given a great gift in this life on Earth and however it is that we move through life I hope we can all listen to the music and dance our dance the best we can.

© 2010-2012Jennifer Hazard

The Six Month Milestone

2011-07-28T17:11:00.000-07:00

Here I am, unbelievably, at the 6 month post treatment milestone. For those you who have been through treatment either yourself or with someone you know, you probably know the swirling mass of emotions that accompany the wait for the blood work results.
In my world, everyone I know who did not maintain SVR post treatment found out at the 6 month follow up, hence the term "Milestone"
Naturally I am a bit anxious. Really I just want to know. In times of uncertainty people often declare that even bad news is better than no news.
Having had the kind of childhood that was frequently wrought with elements of unpredictability and a fair amount of instability, I developed the coping skills of magical thinking and a personal type of superstition as an attempt to predict and control my environment. Hoping for the best while preparing for the worst can be a reasonable adaptive technique, and yet is subject to the individuals state of mind and sense of self at the time. If I were feeling unworthy, down on myself and resigned to a life of struggle, I would spend far more time preparing for the worst. On a particularly optimistic, self confident day I may dare to hope for a positive outcome-because I may actually believe I deserve it.
In the real world however, even though a positive attitude can boost the body's healing processes the bottom line is either the treatment works or it doesn't. By now my body has made that decision and the only way it can tell me is via the results of my blood test. I have an appointment on Wednesday Aug 3 to have a discussion with my Nurse Practitioner, my blood and me. Until then I have no control or influence over the outcome.
I know that ultimately I will be okay no matter what the results tell me. My blood work has been returning to normal and I assume that means my body is functioning as it should be. My physical and emotional health continue to improve and my memory and cognitive functions are reasonably acceptable for someone with my history. My health is good enough that if I am faced with the decision of another attempt at treatment I can probably wait a few years. I have a wonderful supportive partner, a beautiful and funny family, a few good friends and 2 dogs and 2 cats who grace me with their company. I have hobbies and activities that I enjoy and I feel that now and then I am able to contribute something useful and meaningful to society. All in all life is pretty good and I am grateful for the people animals and opportunities that I have. Regardless of the test results I am a pretty lucky woman.

Image courtesy of i RainbowCupcake via photobucket

http://s495.photobucket.com/home/iRainbowCupcake

2010-2011 Jennifer Hazard

The Wheels in my Brain go Round and Round...

2011-04-21T01:30:00.000-07:00

Hello Everyone,
Well, here I am at about 2 and a half months after treatment. Just as while I was on treatment I'm avoiding calendar watching which invariably leads to obsession and distress. The obsession at this point in the journey becomes thay magical 6 month blood test, the generally agreed upon determination of whether this beast has been slain.
I've got to give myself credit for not devoting excessive time to wondering and worrying about it. This is becoming easier as I gradually start to feel better, less toxic, less like I've been awake for days in a row. Bits and pieces of Me are returning, in their own time and at their own pace. Today I ran up the stairs without becoming breathless; on treatment it was a struggle to even walk up the stairs. I still sleep a lot and experience brief episodes of sudden , unexplained malaise and apathy, but they seem to pass quickly.

My most dreaded fear was that my memory and thought processes would remain at the grinding halt they have been stalled in for the past year. I constantly surprise myself in conversation when I can actually remember the name of the movie I'm discussing or the author of a novel or a million other details that seemed to be lost in the fog forever. I still forget where I left my keys or the dogs leash or to do some little task I had wanted to complete, but that's fairly typical for me anyway. I've always relied on to do lists to get things done as long as I don't lose the to do list!
I felt like an absolute genius when helping my son with a crossword puzzle the other day, the answers were just there. I remember hearing that games like crosswords are very good at keeping one's mind sharp as we grow older. I suspect the same might apply to getting one's mind back in working order after treatment. Just as we can strengthen our bodies by exercise, or running up the stairs, we can reawaken our brains by putting them to work. Does anyone else have hobbies or activities that get the wheels moving in your brain?

© 2011 Jennifer Hazard

Hep C and Addiction; Parallel Universes?

2011-04-14T16:54:00.000-07:00

Hi everyone,
I do hope my friends are well whether, pre-treatment, in treatment, post treatment, opting our of treatment or anywhere else along the Hep continuum. And what a continuum it is!
The one thing we share in common, the disease, can be as unique and complex as anyone it plants it's prolific little cells into. I've recently been realizing that living with and attempting to recovery from Hep C [I still haven't hit the magic 6 month milestone] has a lot in common with recovery from addiction.

It does not discriminate, anyone can fall prey to addiction or Hep C.
A result of the first point is that people who would otherwise not have even known each other often develop a special bond than is born of struggle and isolation.
There are Universal emotions, physical manifestations and social consequences [stigma] and yet the way we perceive and cope with these Universalities as unique as our individual capacities.
Accepting the reality of our condition usually takes a considerable amount of time.
The decision we must make regarding how we will deal with our problem is fraught with confusion, anxiety and fear; which is often only complicated by the well meaning but often ill informed and conflicting advice from others.
Treatment sucks.
We learn a lot about ourselves during treatment, but because it sucks we often don't realize it until much later.
Other people neglect to tell us that it's going to take quite some time to feel better.
The relapse rates are generally higher than the success rates.

We're all in this together!

So why on Earth do we go this?

Hope, and because know we are not alone.

We may stumble, we may fall...but we will not surrender.

Post Treatment Realities part II

2011-03-26T15:50:00.000-07:00

still lazing around in bed....

Well, I seem to be at a loss for words, not only because the brain fog hasn't entirely lifted but because I do want to be delicate in how I state what it is I want to say. I will enclose a link to my friend Eva Day's blog because I believe she has summed up so precisely what I seem to be experiencing in my first weeks after EOT. I will include the big disclaimer that everyone's experience is unique, but as with treatment itself, there are also seems to be a startling number of similarities and shared experiences in the post treatment months.
One of the more inevitable is the anxiety that accompanies the wait for lab results. Of course if we've been clear of the virus throughout most of treatment, chances are we'll be that way a week after ending, after all the nasty meds are still running thick in our blood. It is in the later blood tests that we must anxiously wait to see if we have achieved the goal of SVR. I had requested a one month follow up because I know myself and my tendency to obsess over things like this. My doctor was kind enough to indulge me and I skipped off to the lab last week in hopes of finding some peace of mind; even bad news, as they say, is better than no news. Perhaps ironically the lab tech did every test except the viral level, so yesterday I took myself off to the lab and got another poke in the arm. My nurse Practitioner must have really railed on the tech because when she saw me she was quick to avoid my eyes and left the room. I felt kind of bad for her, a dedicated patient advocate can be very passionate, shall we say, about their work.
Now it's a few days of waiting, again. Thankfully my doctors clinic is affiliated with a large hospital and the blood work can be done on site.
There's a part of me deep down inside that has a feeling that I have not cleared the virus. I don't know if it's a result of a lifelong pattern of coping with the uncertain by always preparing for the worst, or something else. It may be the fact that I still don't feel "better", at least not as "better" as I'd like to be.
Whatever it is, I have learned through treatment and other challenging life experiences, that worrying changes nothing but one's own contentment and the best we can do is, as they used to say back in the day, is to "keep on truckin"
Wishing You all a happy, restful weekend!

Here's Eva's link http://evaday.blogspot.com/2011/03/hcv-and-next-taboo-shadows-beyond.html?showComment=1300984661807#c2683809668847465530

© 2011 Jennifer Hazard

The Journey Ahead, keep pushing!

2011-03-17T20:47:00.000-07:00

"When you find yourself in Hell, just keep going" Winston Churchill

What better advice for anyone of treatment! I initially thought of childbirth when I first saw this quote. For anyone who has had a baby you know there comes a point where it's pretty unbearable, but you realize the only way out is through. So you push through the pain to get that baby out! In that situation there's no option to stay put in your misery (as with depression, addiction or other slower painful experiences) Treatment is similar in a sense. Of course there is always the option to give up, to say forget it I can't take this anymore I'm quitting", but ultimately most people decide that since they've already endured some misery they might as well keep going hoping for a positive end result. Just as we get through childbirth one contraction at a time, one push at a time, we get through treatment one day at a time, one week at a time, sometimes one hour at a time...but as long as we keep pushing on we find ourselves out the other end reborn and with a whole new stage of life ahead of us.
I'm saying this in hopes of providing some encouragement, some "labor coaching" for all of you who are in that dark place where you question your ability to continue. Breathe deep, find a focal point and remember at the end there is a new life.

© 2011 Jennifer Hazard

EOT...Continued

2011-03-10T17:50:00.000-08:00

Hello Fellow Hep C-ers.
As I mentioned in my last post I was a little dismayed by the grindingly slow return to some kind of normalcy, or at least functionality not being one to be known for "normalcy"
As of today a month has passed since my last interferon shot and I can say I am starting to feel some bits and pieces of Jenny waking up from their 11 month slumber, slowly squinting their eyes against the light, stretching our limbs and thinking about what lies ahead.
For the past week I have been out of the house at least once daily, I have done some house work at least once daily and have gotten caught up on some paperwork and correspondences that I'd been putting off for quite some time. I have gone out for coffee and on other small journeys with friends and family and I spent an entire day protesting in Madison Wisconsin.
That may not sound like a lot to most people, or to people who haven't experienced health problems, but as many of you know this is a virtual flurry of social activity compared to the past year. As I write this I feel ready to doze off. I just completed a post for my other blog and had spent the morning at my daughters house, after walking quite a distance to the bus and them came home to a delicious meal. As I mentioned in my last post this is a matter of balancing renewed activity with proper self care and rest. I can see how it would be easy to suddenly jump into action only to end up worn out or sick. as it is I've already had an ear infection and now have an abscessed tooth and am on antibiotics. But some of that is to be expected, even under "normal" conditions...and so we move forward, one day at a time, re-emerging into a new phase of life

© 2011 Jennifer Hazard

Post Treatment Realities

2011-02-19T16:31:00.000-08:00

EOT, Post Treatment, "when I'm done with treatment.." While we are in the midst of treatment these phrases dangle before us like a piece of candy on a string, just out of reach but promising sweetness. I really didn't know what to expect for myself after treatment. I have read other peoples' experiences. I have read the materials provided by the pharmaceutical companies and medical professionals, which I have come to realize are Pollyannishly optimistic. My general experience throughout this process is that we all experience treatment a little differently although there are many many similarities. In the support groups I follow often one person will ask about a befuddling symptom, certain that they are manifesting bizarre and unusual reaction, only to have a half a dozen others respond with similar stories.
To be honest I hadn't looked into the post treatment stories very thoroughly. I figured I'd cross that bridge when I got to it since life on treatment was basically best lived one day at a time. I knew I wouldn't immediately "bounce back", that it would take time to rid my body of the poison I'd been ingesting and injecting for the past 48 weeks. I knew it would take time to renew my body from the strain that it had endured, the anemia, the weight loss and the compromised immune system but beyond that I didn't have much of an idea of what to expect.
Here I am 10 days after my last shot, still not knowing what to expect from one day to the next. My energy level is improving slowly, I tend to overdo it and wipe myself out by capitalizing on the newfound ambition. My appetite is back and making up for lost time and although my mouth is still a little sensitive to certain foods, I'm finding my taste for variety is coming back. My mood has improved greatly...well until yesterday, that is.
I had been developing pain and goo in my ear for a few days. I put off going to the doctor because I knew I'd be over there on Friday for blood work, and also because that's what I do, I procrastinate. I put off those visits to the doctor until I'm really miserable. By Friday my ear was visibly swollen and incredible painful, my neck jaw and head all hurt as well.
This occurrence took some of the air out of my sails and seriously dampened my mood. "Haven't I suffered enough in the last 11 months?" and "Can't I just start feeling better?" "waah wahhh"
I realized that treatment doesn't really end when you stop taking the meds. There's going to be a transitional period while I detoxify and regain my strength and hopefully my sanity. Like most things in life we hope treatment will be linear, predictable and finite; and like most things in life it is none of those.
And like all other things in life, we take it one day at a time, we do our best and we do it better with the support of others.

© 2011 Jennifer Hazard

Guest post by Anna

2011-02-12T12:20:00.000-08:00

Hi All,
Here I am done with treatment, although still feelings the effects of Thursdays shot, looking forward to see what the future brings. I'm feeling optimistic, knowing I can't feel worse than I have for the past 48 weeks, ha ha!
I wanted to share the link to this post by Annmarou at Heppy Countdown. First of all she has a delightfully wry sense of humor that is valuable for anyone on treatment or puzzling with this disease. Most importantly, however, is Anna's Strength and Courage when questioning and confronting her doctor. Anna's story is a shining example of assertive self advocacy. It's so important that we remember that this is our health were dealing with and we are required to make choices that can be life altering. If our medical providers fail to provide us with adequate information, choices and emotional support, it is our right to ask for what we need.
One more note, I know it's not always easy to be assertive, to speak up for ourselves, I wasn't very good at it until I hit a certain age; in that case it may be an option to have a trusted friend, family member or professional advocate (if your community has them) accompany you to your appointments to ensure you are receiving the care that is your right.
Peace,
Jenny

© 2010 Jennifer Hazard

Eeeeee OOOhhhhh Teeeeeee

2011-02-09T10:18:00.000-08:00

This title violates all the blogging rules of making your tile "searchable" and "drawing in the readers interest", unless of course you have experience with treatment and you know that it means...END OF TREATMENT!
Can you tell I'm just a little bit happy?
I was thinking back to when I first started out on this long bumpy fog covered road, with only bits and pieces of a road map, like something a pirate would bury, hiding its elusive treasure. I found support systems online, The Hep C Nomads, Hepatitis Advocacy, The Liver Foundation, Facebook groups and more. I read posts from people who were where I am now, finally, blessedly at the end of the road and slowly coming out of the fog. I felt happy for them, and proud for them that they had made it through 48 weeks of basically being a stranger in your own body. But I found it nearly impossible to picture myself at that point, emerging from the place I was in, a place that felt out of time, out of sync with the rest of the world; a strange kind of limbo where nothing feels real. I could not see the end from "in there"
I read the words of encouragement from others who had made it through to the other side and even though it seemed so far away I was glad for the voices from the other side, the hope and strength they offered. I will always be grateful for everyone who has been with me on this journey. People in other countries who I have never met in "real life" who have given so much of themselves when they were so sick it was hard to even sit at the computer long enough to post. This is an amazing community and I intend to stick around to give back what I've been given, not out of obligation but of gratitude and great respect for everyone who travels this journey together holding hands through the fog.
I think I'm going to go shed a few tears now :)
Thank You all so much, words cannot describe what your support has meant to me.
Peace and Love to you all!
Jenny

© 2010 Jennifer Hazard

My walk to the store as a metaphor

2011-02-04T21:26:00.000-08:00

Wind chill minus 9, snow piled 3 to 4 feet high in some areas and I’m out of food and cigarettes. This means a walk to the store is inevitable. Here in the final weeks of treatment and have so little left to give, physically. I become exhausted and achy after the most routine activity, doing dishes, cleaning up around the house, taking the dog out. Needless to say I’m not thrilled about the thought of this walk. I postpone for an hour then realize the sun is heading west. It will only be colder after dark, and the patches of ice will be undetectable. So I “buck up”, eat some Cheerios with ensure and bundle up warmly. My son and his dog accompany my as we set out on our arctic journey. The dog, Mitzy, is half husky and tolerates the cold, my little dog; a Shih-tsu/terrier mix stays home. When I first step out into the frigid air my muscles tighten, I brace myself. A block from the house, I’m short of breath and want to sit down. Since I know that’s not an option, I take a deep belly breath and pace my steps. My muscles start to relax. I can feel my blood flowing I start to adjust to the cold (as much as anyone can at that temperature). The corner store is only 4 blocks away but on some treatment days it feels like miles. By the time we’re halfway there I’ve got a decent pace going, my son and I are talking and laughing, Mitzy is happily trotting along picking up scents to see who’s been around.

I hang in there quite well and although the sun is sailing toward the horizon it is bright and feels warming. The corner store is a fairly typical urban corner store. Narrow aisles are lined with cluttered shelves containing products arranged in no particular order. If you can find it, you can fulfill most of your basic needs whatever they may be. Along with milk, bread and basic family needs like diaper, toilet paper, 7 day candles and mouse traps you can find herbal “all night long” potion, rolling papers, whatever clever novelty gift is being used to make crack pipes and pretty much any kind of liquor you can imagine. It’s always an adventure in cultural irony.

By the time we get home I’m tired, but it’s a good tired. The kind of tired you feel when you’ve accomplished something, not the kind of tired you feel when you’ve been lying around the house with no motivation or interest. I know that kind of tired all too well lately. I realize I enjoy the other kind of tired. I appreciate it.

I know a four block round trip walk isn’t exactly Olympian, hell I used to walk miles a day no matter what the weather; but everything is relative. Today overcoming my resistance “bucking up”, doing what I had to do and enjoying it felt like a Gold Medal achievement.

Isn't life Ironic?

2011-01-26T23:49:00.000-08:00

Hello Everyone!

Last post I addressed the sense of Victimization that some of experience when faced with challenges. For some of us, yes me, the Victim role is like an old comfy piece of clothing. It's comfortable, but out of style and threadbare; it's no longer flattering or particularly useful. And yet, you can't bring yourself to throw it away.

When I got the news yesterday that my end of treatment date is Feb 11th naturally I was relieved. Finally an end to this crazy sick fever dream I've been living in for most of the past year. And yet I found myself feeling, well, a little afraid. I realized that when treatment ends that means I have to venture into my proverbial closet and find a new outfit and it can't be the comfy cloak of Victimhood that I have, quite honestly, donned too often throughout the past year.

After freaking out about that for a while I realized for the 100,00th time that panic has never made any situation more manageable. I don't have to have all the answers yet. I still need time to recover, to (hopefully) get my thought processes a little more clear and if I keep following my heart I will know what's right for me.

I also realized that I've been feeling a little pressured by others, some well meaning, others critical and judgmental, that there is this expectation that I will return to work and life will be normal. Frankly I don't see myself working full time, but I may have some opportunities for flexible work. Disability allows recipients a certain number of hour’s employment, and if I could supplement my fixed income a bit, feel useful and still have time for my writing and self care. I think I'd be living a pretty sweet life. It's an empty page, not empty but filled with notes, scribbles and ideas. I like to think of myself as an explorer, an adventurer seeking to discover my own passage, my own path to the next chapter. When I look at it that way, as opposed to the confused, frightened Victim I realize I can take that little girl by the hand and say "hey kid, it's gonna be ok, I'm gonna show you the world and you'll never have to be afraid again.

A Sense of Purpose, Casting off the Cloak of Victimization

2011-01-21T12:21:00.000-08:00

In my previous post, "When Your Mind has a Mind of it's Own", I was swimming in some rather dark emotional waters. Much like my physical state, this status can change frequently and without warning. At times these moods appear out of nowhere like a dark cloud looming over a previously sunny day, but if I sit with those clouds long enough I discover that there is usually a weather front somewhere that formed the clouds in the first place. After spending a week moping around and doing my usual reading and research I've come to realize that this whole "after treatment" mystery is probably a little more pressure I had realized; and not just for the reasons you'd think. I mean there are the obvious concerns: "what if go through all this and don't clear the virus?" and "what if I never really get back to the way I was before treatment?". Then there are the vocational issues as addressed so candidly by my peer blogger Ian Quill in his recent blog post (see link below). Many of us Hep C survivors (and survivors in general) are exploring and creating our own solutions to the question of vocation. Many of us have been able to appreciate the gift of time and self reflection this disease has provided, enabling us to redefine our values and goals and that is a wonderful gift.
I've never been this kind of person in the first place, I chose a career that is extremely underpaid and undervalued because it is what I love to do and because I believe that service to others is one of the greatest gifts we have to offer. No matter what our work history the way we make a living, the fact that we dedicate ourselves to work, to being accountable and receiving a paycheck is a significant part of our sense of self. As with so many other areas of our lives, the bits and pieces that make us "who we are" are often disrupted by this disease. It is one more area where the rug is pulled from underneath our established footing leaving us wondering how and if we will walk again.
For myself, I am able carry on in a similar role as in the past, only perhaps with less direct service. Writing and organizing is a way for me to continue my role as an Advocate and I can hope that someday, in some way it, will help bring in some money. I have no desire to be rich and famous, or even upper middle class. I prefer a simple life...but I'd like to be able to get through the month without running out of money halfway through. I'd like to know that if my dog eats a garbage bag I can take him to the vet and get it extracted. Although loss of income may be an inconvenient side effect, it is the need for a sense of purpose is far more essential to one's well being.
I encourage anyone whose vocation has been limited or lost entirely due to this disease to take the opportunity to find something to dedicate your energy to; a cause, a hobby or maybe a spiritual focus. Think of all the things you wanted to do if you had more time and pick one or two that you are able to work on. We all need to feel productive and useful. One way to accomplish this is by using our experience with Hepatitis to add to the efforts to tame this dragon. It has been my observation that many individuals who are disabled or limited by an illness, injury or other condition find great satisfaction in mentoring others, educating the general public or taking political action. We often feel that our disease has taken control of our lives, robbing us of our power, we feel victimized. However, if we can make the choice to be active in education, support and prevention efforts we find ourselves stepping out from under the cloak of "Victimization" and into the light of purpose and empowerment.
Not sure where to start? Here's a link for suggestions!
http://www.hepatitisactivist.org/
© 2010 Jennifer Hazard
Ian's blog-http://ianquill.blogspot.com/2010/12/get-job-get-life-hepatitis-c-liver.html#links

When Your Mind Has a Mind of it's Own

2011-01-11T09:25:00.000-08:00

Looking back at my last post stirs the kettle of emotion for me right now. Part of me feels almost embarrassed at the dark self indulgence and misery. And yet, I know that is part of the process. I know myself well enough to know that Hep C or no Hep C, if I find an emotion is becoming an annoying presence, like a pimple forming, that I need to indulge that feeling, to give it it's due attention.
There have been so may times in life that I have held back my feelings, pushed them aside and pulled myself up by the bootstraps to carry on as the Brave Little Soldier. Some of us learn to do that at a very young age. There were things going on in my family, growing up that as the oldest I felt it was my duty to "pull it together" and carry on in order to protect my siblings. And besides, focusing on them was easier than experiencing my own fear and confusion. That response may serve it's purpose in the short term, but it comes with a high price tag in the long run. Fortunately I've learned a few things along the way and one of them is that those buried feelings have to come out and be acknowledged somehow. Ironically, being on treatment, sitting at home most days, I am immersed in the "opportunity" to experience my emotions, whether I like it or not.
To quote my fellow Hep C blogger Eva,

"Yet the mostly painful and disturbing thoughts or distorted fixations continued regardless of whether I wished to turn attention to more healing or cheerful possibilities" http://evaday.blogspot.com/

This is so accurate, our minds have a mind of their own, so to speak. There are thoughts and emotions we really have little, if any, control over. It frightens me to remember that some people become delusional and /or suicidal on this treatment. It's one more reason that we really need each other, and our friends and families, our medical providers, anyone close to us to try to understand that we need support, we need understanding and feedback.

I am so incredibly grateful for the people I've met along this crazy timeless path through the mist. I'm grateful for the others who write and blog and share their stories with courage and honesty. We've got a pretty good community going here. I guess we could say "it takes a village to raise a Hep survivor" I hope that new readers will find welcome and comfort in our little "village".

Peace,

Jenny

the fog just got a little thicker

2011-01-09T10:35:00.000-08:00

In my last post I talked about the difficulty in seeing the light at he end of the tunnel, the longed for EOT (end of treatment) date. I thought that date, for me, was in early February. Throughout my treatment I have avoided keeping close track of the timing. I know myself well enough to know that would lead me into familiar old patterns of obsession, frustration and the lovely bind of self indulgence; picking at the wounds and wallowing in self pity for the scar that was created. So knowing this about myself, my penchant for teenage like angst, I decided to take the high road and simply get through this without minding the calendar.
Until recently that is... I'm really ready to be done with this. The physical and emotional toll is like being under a pile of rocks which each day has one more rock added to the pile. So at my last visit for my procrit shot I asked the my nurse for the actual EOT date. We had both thought it was sometime in February, but the news that it's actually one full month later was, well like having a couple of wheelbarrows of rocks heaped on the pile all at once.
To get through this, I bargain with myself, and I've been telling myself, Self, it's only a little over a month, we can do this. That day in the nurses office that part of myself I coddle and and bribe and cajole along pretty much collapsed into a pile of tears like a little kid. You know how they do it, as if their bones suddenly dissolved and their tear ducts have an automatic "drama alarm" which sets off an instant prolific flow. Meanwhile, Grown Up me ignores the kid having a fit in the corner, puts on her Mommy "everything is going to be ok face" and drags the snot faced boneless Little Jenny home.
Fast forward a couple of days and as is the course of nature the inevitable push and pull between Little Jenny and Mom Jenny gives rise to Angsty Adolescent Jenny! Ta Da!
My Therapist once described me as The Eternal Teenager. I was not offended at all, and not because of our youth oriented, plastic surgery obsessed culture. I admire teenagers, I've spent most of my life working with them. I love them for their defiance, their mistakes, their question authority attitude and their fierce quest to find themselves. Individuation, they call it, and it drives parents crazy.
One of the things that gets teenagers into trouble is they have a limited capacity to see the future, they live in the moment, be it good or crappy. Sound familiar? Remember that fog that has been obscuring the "after treatment" possibilities? Well on that day in the nurses office the fog just rolled in a little thicker as Angsty Teenage Jenny took over.
That's where I've been the past couple of days. Pissed off at the world. I watch the news and not only am I pissed at what I see, but I'm pissed at the way it's reported. I try to watch some videos of some of my favorite music and I realize two thirds of the musicians are dead...overdoses, car accidents you know the life.
I think I need to let go of the angst and just let that little kid cry and cry, but I'm afraid it won't stop.
I know this will pass, it always does, but for today I'm going to indulge my misery for a bit...I haven't decided how, but I don't have it in me to watch pretty little Marc Bolan and remember how his life was cut short by a car smashing into a tree. He didn't even drive.
xo
Jenny
© 2010 Jennifer Hazard

Hepatitis C Research and News: Beacon NewsFlashes – January 3, 2011 (The AIDS Beacon)

2011-01-03T18:13:00.000-08:00

New Year, No Pressure

2011-01-02T14:36:00.000-08:00

Happy New Year!!

I've been "writing" my New Years blogs in my mind (yeah that's how I roll) all week. This time of year I like to take stock of the past year, do a little self inventory as they say in recovery, and then think about what I'd like to see happen in the upcoming year. You might notice I don't use words like, “goals", "life plan" or "resolutions". I never really learned about the concept of "goals" until later in life and for some reason (unfamiliarity? Corporate overuse?) the word still makes me bristle a bit.

In keeping with the recurring theme of irony that is my life, it was about the time that I began to internalize the concept and actually create some goals that life yanked the tablecloth out from under my neatly arranged plans like a second rate magician trying unsuccessfully to pull the tablecloth from under the china. My finely laid table was a shambles of chipped china, scattered silver and spilled glasses. Like most survivors I know how to pick up the pieces that are still useful, repair what I can and discard the rest.

Resetting my table is pretty much the forte, and maybe that's why I have always avoided planning ahead. I'm certain that there are many people out there who will insist that recurring chaos is the result of poor planning rather than an excuse for it and they are probably right, and yet so am I. If I've learned one thing in this life it is that seemingly paradoxical truths can exist and be valid at the same time. On a good day life is a theater of the absurd in my eyes, on a bad day well; let's just say I lose my sense of humor at times.

As far as resolutions or goals, I'm functioning on a pretty primal level right now. Goal 1) Eat more than once a day. Goal 2) Get out of bed every day. Yeah, ambition is not high on the list right now. On the other hand I have accomplished several things I probably would not have if I'd been working full time. I have two regular blogs that I do a fair job of keeping up with. I have been designing my own website which is actually finally presentable (see link at bottom of page). I've done a lot of crafting and artwork I've always wanted to do. I've gotten to know many people online in various communities who share many of the same interests and concerns that I am passionate about. And I've spent a lot of quality time with my family both human and four legged.

The Big question mark hovers over the statement "after treatment..." It's difficult to even visualize that place, the place that exists beyond treatment like some kind of magical isle that disappears into the mist. As synchronicity would have it I recently stumbled across a post by one of my fellow Hep C bloggers that pretty well sums up the mists that obfuscate the future and allow us to cherish each day as it is. I hope you will enjoy reading it as much as I did http://ianquill.blogspot.com/

My Website-
www.nanakoosasplace.com www.whitewaveconsulting.org
check "em out, I'd love some feedback.

Thank You and have a blessed and healthy 2011!!!

Letter from Santa

2010-12-25T08:37:00.000-08:00

Hey There kids!!!!
Santa just wants to say sorry there's not much going on this year for the Holidays. Santa's been really tired lately and somehow every time Santa goes to the workshop foggy headed-ness and apathy sink in.
See, Santa picked up a little virus back on the 80's. It was probably one of those damn Elf parties...those guys are crazy! Anyway we were all sharing candy canes and, well things were just a little different back then for Santa.
So now Santa's working really hard to get better so we can all enjoy life and the Holidays like we used to. Unfortunately "working hard" in this case LOOKS like not doing much of anything, and paradoxically it is. Santa needs lots of rest to help the medicine work.
So Kiddos, Santa loves you all and that's why Santa's doing this nasty treatment...so we can enjoy many more Christmases together!
Peace and Joy to All!
S. Claus

© 2010 Jennifer Hazard

For What it's Worth

2010-12-16T23:39:00.000-08:00

Week 40 (roughly) and I do mean roughly. I no longer recognize myself when I look in the mirror. I have lost
35 lbs, I already have a thin face which now seems skeletal at certain angles. I've cut my hair the shortest it's been since the Punk era. I don't bother to put on make up anymore so the circles under my eyes are making their own fashion statement. You don't even want to know what's going on under my clothes, let's just say I've aged quite a bit this past year.
When I run into people that I haven't seen for a while, I can see the skepticism in their eyes when they ask "are you sure it's worth it? for a coin toss?"
Is it worth it?
Who really knows? If I achieve SVR of course it will be worth it. If I slow down the progression of the disease, yeah probably worth it. If I don't clear the virus? Who knows? Who knows what progression the virus would've taken if I hadn't treated? This is a quirky disease, it doesn't play by the rules, you never know when it's going to sneak up on you...or not.
But isn't that the way life is, really? Are there any certainties? Decisions have to be made on a daily basis, some bigger than others.When you are faced with a chronic medical condition, some choices have more at stake.
After lots of research, conversations with others who've been through this, meeting with my doctors and completing all the testing (I'll never forget 15 vials of blood at the lab) I ultimately went with my intuition when deciding to treat. I've learned to trust my gut, most of this education was bestowed upon me as a result of the consequences of not trusting my gut! Once I have made a decision, I typically don't look back. I may end up changing my course somewhere down the road but once my mind is set the wheels are in motion and there's nowhere to go but forward. Granted I've made some, shall we say, unwise decisions in my days, but I've made some damn good ones too. Everything that has manifested is, I believe, part of the lesson I'm here on this earth to learn.
So is it worth it?

Of course

© 2010 Jennifer Hazard

Miss Cranky Pants

2010-12-03T14:46:00.000-08:00

Hello All,

So yesterday was shot number....hell, I don't know; feels like one too many though. I must say I've generally been feeling a bit better lately, especially emotionally. I have been able to view this experience through a wider lens and instead of feeling trapped inside every aching moment I've reminded myself that hardship has the potential to allow us to gain wisdom. (if that's the case I should be some sort of Guru by now) But seriously we only gain wisdom if we choose it; we can choose to become bitter, angry, resentful...you know the list. I've realized however that part of being wise is acknowledging the fact that we are not perfect, we are not Gurus, we don't know it all and we don't walk around in a Blessed State of Serenity, at least not all the time. Acceptance is perhaps the better part of wisdom (that may be an actual quote that's been floating around in my subconscious, if so I apologize for not giving credit)
So today, I'm allowing myself to be pissed. I'm pissed that I'm having a bad day and an experiencing "flu like symptoms" and I'm hungry and too sick to go to the grocery store and I'm pissed that I feel whiny. So there.
One thing I have figured out, on the emotional/psychological front, is that there are days I wake up feeling like crap, but I can push through it and end up having a decent day. Mornings are the worst for me, until I get something to eat, some coffee and water, I think I'm sick. For a long time I only listened to my morning self, not a trusty source, and just didn't do anything. I'm always pleasantly surprised when I find out that Morning Jenny, aka Miss Cranky Pants, is wrong, she's just being cranky and not wanting to get out of bed.
But then there are other days, like today, where I ignore miss Cranky Pants and go try to accomplish something only to realize I feel like I'm about to keel over or throw up, in no certain order. Today is one of those days.
One more boulder on the climb to the top of the mountain where the Wise old Guru sits, laughing at the Human Comedy.

© 2010 Jennifer Hazard
Photo of Crabby Girl courtesy of the Graphics Fairy,
http://graphicsfairy.blogspot.com/

Thanksgiving and all that

2010-11-25T19:37:00.000-08:00

Hello everyone,
I hope you all had a pleasant holiday however you choose to acknowledge it. As always my kids and I did ours on Wednesday then they go to their Dad's on Thursday. We had a nice meal and I was having a "good" day in terms of energy level. My son prepared nearly the entire meal and my daughter did all the cleanup. I started to protest but it occurred to me that for all the bitching I do about lack of support for people on treatment I should just relax and be THANKFUL that they did all the work. One family tradition we have is that as we sit down to eat everyone lists things for which they are thankful, and I was truly thankful for my family. They don't always get it when I'm exhausted or sick, but how could they really? they are 17 and 19 as I recall at that age one's capacity for empathy is still developing. In fact I believe that although the seeds are planted in early life, empathy is a trait which develops over an entire lifetime-hopefully.
Today was not such a good day, I felt terrible all day, neck ache, headache, nausea and just generally feeling out of it. It seems to go that way, a good day or two followed by feeling like crap. I'm in my 9th month of treatment now and starting to feel very toxic, and really have had just about enough. But two months to go and it will be over; then begins the 6 month trial period to see if I attain SVR. I honestly try not to have too many expectations one way of another. We hear a lot of people talk about the power of positive thought in the healing process and although I do firmly believe this myself I find it difficult to apply specifically to healing my Hep C. I feel that, for me, it's probably more productive and healing to maintain positive perspective in general and that will extend to my physical well being. I tend to get a bit obsessive and if I were to spend hours sitting around focusing on my liver, I think it would do more harm than good. But that's just me, and my way of doing things. Other than coping with side effects and participating in education, support and advocacy (mostly online) I try not to think about it too much. I don't countdown the weeks until EOT I couldn't even guess how many shots I've done (although I could figure it out if I wanted to) and even following my lab results I only pay attention to what is absolutely necessary.
This process of managing side effects is enough of a task all by itself, as far as the rest, what will be will be. Because this is such a difficult process and for me the sides have been pretty bad, I appreciate having a day to remind us to focus on things for which we are Grateful, it's good practice for every day!
© 2010 Jennifer Hazard

Stop Hep C-Resource Info.

2010-11-08T19:59:00.000-08:00

Hello all,

Here is a link to the Chapman House Community Center located in S.C. I addition to providing services to the Elderly, disadvantaged, homeless and jobless they are also home to StopHepC, a non-profit organization providing education, prevention, support and advocacy for those with Hep C and Hep C/HIV co-infection. Please check out their resources page as there is lots of great information there. From what I can tell this is a fabulous organization and a model for more Hep C support programs nationwide! I'm really hoping to be able to get something like this going in my area; we have a lot to learn from organizations such as this to help us organize and advocate for ourselves! Keep on fighting the good fight!
Jenny
Stop Hep C
© 2010 Jennifer Hazard