Final Thoughts and the Future

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

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

The Six Month Milestone

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

Hep C and Addiction; Parallel Universes?

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.

© 2011 Jennifer Hazard

The Journey Ahead, keep pushing!

"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

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

My walk to the store as a metaphor

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.

© 2010 Jennifer Hazard

A Sense of Purpose, Casting off the Cloak of Victimization

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

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

© 2011 Jennifer Hazard
Image courtesy of the Graphics Fairy

Miss Cranky Pants

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

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.

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

I'm on a Mission

Today's tasks in Jenny's world of Hep C, were to reconnect with the discussion forum at Hep C Nomads. If I haven't mentioned them before they are a welcoming supportive, knowledgeable online community with members from all over the world. I highly recommend checking it out if you have questions, need support or just want to compare experiences. They also have a forum for caregivers, an often overlooked yet relevant determinant in the experience of Hep C sufferers and those on treatment or experiencing the wait and process of liver transplant.. I hadn't posted in over a week and it felt good to catch up. It also reminded me how vital emotional support and understanding is to my state of mind and coping with the Depression that accompanies this process.
I am extremely grateful to have found this group and will include the link at the bottom of this post.
Task number 2 was to investigate, online, the city of Milwaukee Health Department and determine what, if anything, they are doing to educate, prevent and advocate for Hep C. Not surprisingly I didn't find much. It was clustered in the classification of std's and other communicable diseases. Many of the statistics and "facts" were incorrect or outdated. so I decided to send an email explaining, politely, what some of the needs of the Hep C community are and which are not being met. I specifically suggested that public education and training for physicians and nurse practitioners be given priority. Too few people are getting tested, and even the medical community knows very little about the signs of Hep C and it's prevalence. We'll see what kind of response I get. One thing I learned as an advocate is if you don't receive a response in a reasonable amount of time, you find out who occupies the next rung on the ladder. I've followed that ladder all the way up to State Assembly on more than one occasion, just to help someone get Medical Benefits.
Tomorrow's task is to contact the Veterans administration, as they seem to be more on top of the topic of Hep C than most local entities I've encountered so far. Then my plan is to finally attend the support group that meets at one of the local teaching hospitals. Now that I've discovered Medicaid will pay for transportation, I'm finally able to make it out there.
So, that's where I'm at so far and I will report back with updates! As usual, I'm open to ideas and suggestions either by comment section or by email at nanakoosa@yahoo.com
Take care all, drink lots of water, get your rest and take care of YOU <3
 © 2010 Jennifer Hazard
hepcnomads.co.uk/

A Call for Unity

I tend to spend a lot of time on the Internet these days. Primarily because it's something to do and a way to connect with others that doesn't require money or energy, both of which are in short supply these days. Logically since this treatment seems to be dominating most areas of my life I've spent a fair amount of time connecting with others via forums, blogs, newsletters etc. I have also been on the quest for resources, support systems and advocacy both to help with my own personal needs and, well because as an Advocate/Social Worker it sort of comes naturally to me when faced with a problem or need to immediately start seeking out resources and solutions.

Online I have found some fabulous resources for information regarding Hep C and treatment, I have shared a few here on my page and will continue to do so. I have also found individuals and groups who are extremely supportive and and welcoming, in these cases the common bond of this disease has forged instant friendship and a network of information, empathy and experience.
Buuut, ok here comes the 'but', I have also encountered misinformation, prejudice and a certain amount of "us" and "them" mentality when it comes to how the disease was contracted. Most will agree that one reason we don't get a lot of public support, publicity, huge funding drives etc. is that Hep C is viewed as a "junkie" disease, or somehow otherwise unclean, the result of carelessness and personal irresponsibility. I have actually heard more than one person say, I got sick from a transfusion because of some slimeball/junkie and their drug problem.
To a certain extent I can understand their frustration, you live a clean, orderly 'by the book' life and bam you end up getting this disease. Well guess what? You can lead that kind of life style and have any number of misfortunes occur. People who have never smoked end up with lung cancer, people end up with all sorts of horrible diseases and conditions without having "done anything to deserve it". I'm reminded of the Televangelist (I can't remember which one) who, back in the 90's said that AIDS was 'God's retribution for sinful and unnatural behavior". Holy Cow! I wondered if he had ever ministered to anyone who was dying of AIDS, if he had watched them suffer the pain and despair of the illness and the heartbreak it caused to their partners, families and friends as they stood by desperately trying to help, to comfort to do anything to try to stop the horrible suffering of their loved one. Of course there are still people who feel this way, but the public perception of AIDS has changed significantly over the last decade or so. So how was this accomplished/ First of all you've got some pretty big celebrities who came out with the disease. Then you've got other celebrities who have come out in support of their peers and who who have the money and media presence to actually make people sit up and listen. Then you have grassroots organizations who were dedicated and persistent enough to organize, educate and demand to be heard. Part of what fueled their unity was the reaction to such harsh, judgemental statements as those made by Conservative Christians; nothing creates a bond like a common enemy. But seriously, if the Hep C community is going to successfully unify, to demand money for treatment, research and supportive services we have to put aside our pride  and defensiveness and division based on method of transmission. I mean really who cares how you got it? I rarely ask anyone how they contracted the disease, I want to hear about how it's affecting them now and what they're doing to cope. On the other hand I will be the first to admit that, yes, I made some reckless choices when I was younger, I did inject drugs and even shared works (equipment) with others. In 1979, no one had heard of AIDS or Hep C, at worst you might get Hep B but even that wasn't very common in my area. Does the fact that I had a drug problem mean that I deserve this disease? Believe me a drug problem already comes with plenty of negative consequences attached. Neither I, nor anyone I was using with at the time, would have knowingly donated tainted blood, so some innocent clean living person could get infected.
I'm putting out a call for  Unity and Understanding. If individuals have resentments about contracting this disease "without doing anything wrong" those are valid feelings and can be discussed in an adult manner. But this separation and infighting is preventing us from moving forward in our demand for funding, treatment options and public respect.

 We can't wait around for wealthy celebrities and PR people. We have to keep this ball rolling ourselves, to keep pushing to gain the momentum and the number of voices that will demand attention and response. I have noticed groups scattered about the country, some are really accomplishing great things; we need to learn from their models and apply their strategies to our own communities while also creating our own groups, organizations, community centers and public education campaigns, building upon each others strength and experience. It is only by working together with a common mission and respect for one another that we will dispel misconceptions, gain public awareness and truly begin to be viewed as a population of value, worth investing in, worth saving regardless of what circumstances brought us to this table.

I am working on organizing a group in my community and would love to hear from others who have thoughts, ideas, success stories, not-so-successful stories and anything else you would want to contribute to the discussion.

If you live in the Southeastern Wisconsin area and are interested in creating Community you may contact me by leaving a comment, or by email at  nanakoosa@yahoo.com

Peace and Blessings,

Jenny

© 2010 Jennifer Hazard

may cause, fatigue, weight loss and Existential Angst

I had my 6 month follow up with the Gastroentologist yesterday. I usually try to arrive prepared with what ever questions have been buzzing around my head recently.  I had asked ahead of time for them to count how many weeks I've put behind me and how many left to go.
When I arrived at my appointment I must have looked as vacant and vulnerable as I felt, because the nurses were especially compassionate. They  are always very caring and thorough, but they went the extra mile this time.  I've been having a few really difficult days, headaches, emotional turmoil, no appetite and financial concerns, so I was already dragging.  To add to my pre-existing frumpiness, all my jeans hang off me like some Urban teenage boy, only without the cool and swagger; quite a different view on on 51 year old white lady. Naturally first part of the visit was to get weighed, I lost five more pounds. Ironic, I've always been conscious about my weight, nearly to the point of anorexia in my younger years; but in the last year or two I've come to appreciate my middle aged body and even gave away my "skinny jeans" (thus reinforcing my pathological obsession with hanging on to nearly everything 'in case someone needs it someday') The next bit of news was that although my hemoglobin had gotten to a reasonable level, 10, after a few weeks of  'the-shots I-can-never-remember-the-name-of', it was now back down around 8. I had suspected this because I've found myself becoming more easily winded again.
So here I am at week 28 (if I was geno 2 or 3 I'd be home by now) instead my eta is sometime in January, I could figure the exact date but I'm not going to just yet.
Whatever it is it's not soon enough. My Doctor, who I do enjoy, spent about a good half hour giving me a pep talk..."more than halfway through".."you'll clear this forever"...you'll return to the old you within days of stopping treatment" with all due respect to, and belief in, the power of positive thinking....I'm well aware that there's somewhere between 30 and 50% chance the virus will return within a year or two, if not sooner and most of the people I know who have been through treatment report that it took months to feel better. Somewhere between Pollyannaish optimism and complete nihilism there exists an entire web of possibility. I usually believe in some combination of destiny and self-determination, but lately I often feel too tired, too vacant to throw my cards on the cosmic blackjack table of self determination  vs. Destiny, aka, the Dealer. For today anyway, I''m paying my respects and giving homage to Lady Luck to play a few hands for me.
© 2010 Jennifer Hazard
image courtesy of 'TheGraphics Fairy", graphicsfairy.blogspot.com/

Not The Hair!

As those of you on treatment or familiar with treatment know, hair loss can be one of the side effects. according to the Department of Veteran's Affairs, 1 in 3 people will experience hair loss or thinning while on treatment. Unlike chemotherapy the thinning is gradual and generally does not involve complete hair loss.
Fortunately I had decided before going on treatment I thought I might want to try a shorter hair cut. Unfortunately I had also just dyed my hair to a color I really liked, which involved stripping the naturally dark brown to as blond as it gets which is kind of like an unripe pumpkin. Now that the "favorite color" dye is washing out and fading I'm left with a rather tacky, brassy reddish color and dark roots. Tacky. So ended up getting it cut short, hoping the lighter parts would look like highlights or tips or whatever but I realized I'd have to go way too short to pull that off. It's not THAT bad really, and I'm glad I did cut it because my hair is quite fine to begin with and it has thinned somewhat. Other than occasionally dying my hair, I usually am pretty low maintenance. I rarely use hairspray or "Products" I rarely even blow dry it unless it's winter and I have to be somewhere, so following the hair loss prevention guidelines has been pretty easy. The cut that I have and the fine texture of my hair is such that I seldom need to comb or brush it, I can just run my fingers through it and go. Now the big dilemma is, since I've been so "good" to my hair so far can I rationalize dying it? I've recently been experiencing some self image issues along with the other emotional side effects.  I've come to realize how I feel about myself impacts the way I look and vice verse. As with my hair, I'm not what you call high maintenance girl. I do, however, have my own distinct style (earrings, scarves and unusual jackets are kind of my trademark) and I realized recently that I have really let myself go. Since that epiphany, I've been trying a little harder to be mindful of my appearance, to wear clothes that I really enjoy and that are colorful and expressive, at the very least get out of my pajamas because there are plenty of days that hasn't happened. It has helped, on certain days, but there are other days it still doesn't feel worth the effort, then I feel depressed and the cycle begins again. Blah. One thing that won't require a daily effort is my hair, I'm going to go ahead and throw caution to the winds and dye it; and hope it doesn't fall out. And if it does I  do have lots of beautiful scarves!

Hair Care Tips:
Wear caps or scarves.
Use a wide-toothed comb.
Don't pull on your hair or comb it a lot.
Don't blow-dry, dye, perm, braid, or cornrow your hair

Victorian hair oil image courtesy of 'The Graphics Fairy" graphicsfairy.blogspot.com/
For more information on managing side effects and Hep C in general you can visit the Department of Vetrans Affairshttp://www.hepatitis.va.gov/vahep?page=treat-09-01
© 2010 Jennifer Hazard

I'm Still Here

I’m still here

I know that when you look for me it seems I’ve disappeared

I know the ghost of me, I see her in the mirror.

I wish I could open a window to let you see inside

My soul

I wish I could call out to you and tell you please

Don’t let go

I’m still in here I promise and I’ll be back

It’s just right now I’m hiding from a brutal attack

See my body is a battlefield

And right now it’s under siege

I’m hiding in the trenches waiting for the troops to leave

And when this war is over, it’ll be safe to come out and play

Just please don’t forget about me because I’m fighting every day.


*ok so I did not inherit my Fathers talent for poetry, but this needed to come out exactly as it is*
© 2010 Jennifer Hazard

No cure for the summertime blues

It's HOT, too hot. I found out the hard way that when my nurse told me that staying hydrated will make all the difference in how I feel, she really meant it. Back in the beginning of this heat wave a few weeks ago, I had a particularly busy day, errands to run a doctors appointment, etc. I don't have a car so I alternate between walking and riding the city bus and sometimes it's necessary to walk several blocks between transfer points. I felt pretty good starting out the day, more energy than usual, and made ambitious plans. At the grocery store I proudly filled my cart with all sorts of healthy fresh foods,thinking how I am doing such a fantastic job of taking care of myself through this treatment. Yay me! What a good girl!

I don't know if it was having been in the air conditioning that made outside feel like a giant open faced pizza oven or if the temperature had really risen that much but when I stepped outside I was blasted in face with what felt like an inferno. Because of my super self care shopping spree I had two large canvas bags stuffed to the top with groceries. Ok so it's two blocks to the bus stop, no problem. That two blocks felt like walking uphill dragging a steam engine pumping heat at me. Ribavirin tends to make you feel short of breath, even without the heat and the load I was carrying. After two blocks my heart was pumping like the aforementioned steam engine, and I started to feel dizzy. The bus finally came and took me to the next transfer point where I helplessly watched my next bus pull off. Ok 20 minutes until the next bus. By now my brain must've been addled by lack of oxygen because I decided I might as well start walking until the bus came along. Somehow at the time it made sense to me that it was better to keep moving. "Nothing bad can happen if you keep moving" a desperate refrain from my younger days when my lifestyle was lived in a state of fight or flight. I walked a few blocks, occasionally stopping to rest, and finally surrendered at the bus stop, the one with a bench. By this point I could feel that my face was beet red, I was sticky with sweat, and my tongue was pretty much stuck to the roof of my mouth. I dug in the bag for something to drink, but of course, I hadn't actually bought anything cold. I settled for a warm ensure, which never before or since has tasted so good. Now I was actually starting to feel chills, despite being hot, and my head was pounding.
I finally made it home, grabbed a huge jug of ice water and some ibuprofen and fell into bed and asleep. I slept for about 12 hours before waking up to realize I was still sick. It took several days, close to a week actually, before I started feeling "normal", as normal as one can feel on treatment. I think the most difficult part of treatment for me has been accepting the limitations I now have.

The Moral of this story is, like it or not, many of us on treatment can't do the things we are accustomed to doing. We have limited physical and, based on my poor judgment, mental capacities. One thing I have learned over the years of misadventure and return to sanity is that acceptance is the key to any hardship. Once we surrender to the way things are we become much more able to make adjustments, changes and accommodations which make life much less miserable. So now I'm sitting home in front of my fan, a HUGE bottle of water next to me. I've learned to limit my activities, especially in the heat...and I make my son do the grocery shopping with me. Maybe there is a cure for the summertime blues, if the livin is easy. :) © 2010 Jennifer Hazard