Monthly Archives: September 2010

>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
Advertisements

It is what it is, and that’s all that it is.

I don’t know if it’s the Ribavirin making me  crabby or what (there is such a thing known as ‘riba rage’) but I’ve recently become irritated at phrases like ‘Healing Journey” or “Self-Discovery”. But wait you say, isn’t that what this blog is all about, Jenny? Well, yes, and no.
First of all as I’ve contemplated Life, and Misfortune, and Happiness and Growth and All That We Are it has struck me that many of the phrases we use imply some sort of ending to the process. Some sort of goal…to be, what Healed ? Then what? What does that even look like? And worse yet are we selling our selves short by not being at some point of healing that we think we should be.
Part of this problem has to do with linear thinking. We are not to blame for that, it’s the way we’ve been raised in our culture to perceive time, and movement and growth. Fact is, we really don’t understand much about any of those things. I’m no expert on quantum physics, it fascinates me but makes my brain hurt, but I’m pretty sure the “way of the Universe” is not linear. And neither are our lives. I’ve talked before about healing happening in layers and stages, but that still implies some sort of final destination, to some kind of core truth. Maybe that’s enlightenment. But I’m not so sure even Enlightenment happens all at once, unless perhaps when we die.
I’ve mentioned before that I’m somewhat changing my tone, my approach, to this blog and my goals in general. It’s been almost a year since I’ve been out of work, out of the field of “Helping” with their strict definitions of  “what works”, what “sucess” looks like, and what it doesn’t and their quest for “Evidence Based Practices”.  When I reflect on my original goal, it is to bring a little more Real Life into the services and systems that are designed to help people. One of the finest Therapists I ever worked with used to say “it is what it is” any time a client would lament her situation, especially if she were condemning herself. So yeah it is what it is, if it’s “progress” ie learning to make healthier choices for ourselves, or choices that are more in sync with what we believe in and value. If it’s making a mistake, even though we’ve made the same mistake before. It all part of the process of life.
So for my own self respect, and contribution to my creative abilities, I am going to throw out the psychobabble, I’m going to tell it like it is. I might even swear, damnit,
As the Great Journalist/Commentator Walter Cronkite concluded his evening broadcast, “And that’s the way it is”

© 2010 Nanakoosa’s Place, authored by Jennifer Hazard

I saw this quote this morning and felt it spoke to my thoughts in this post 🙂  Thank you, Julia and Wayne!
Julia von Flotow Via Wayne McGuire – “The Universe has no edge and the centre is everywhere.”

Wishing everyone a peaceful weekend!


>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


My life on film, er, pixels

the Tat, wish #2

A couple of years back when my last boyfriend/ man friend and I separated due to “creative differences” he got custody of the “good camera”. By “good” I mean, not disposable, and it isn’t pink with Hello Kitty emblazoned all over it. When I got my tax return last year my tax guy (like I have ‘people’, lol) pretty much told me that this was the last year I was going to rake it in on all the deductions my single Mom status with a low paying job and excessive student loans had previously bestowed upon me once a year. I figured I’d better make this last run a good one. I did take care of some debt and other responsibilities, gave my kids spending money and bought my Granddaughters some clothes, but I had promised myself this time I was granting 3 of my own wishes..and lo and behold I did.
My 3 wishes were: a new laptop, a new tattoo and a “good” camera. The laptop has been well worth the investment.  I am able to sit in privacy and write, email, blog or check in on facebook gossip. The tattoo is pretty badass and represents my courage as a survivor. The camera has just been plain fun. It’s one of those cute little colorful things that we see Ashton Kucher gliding around cocktail parties sneaking pics of attractive young women who pretend not to notice. So logically since this pretty boy can use it successfully, so can I. Well I can now after some trial and error (heavy on  the error side) and after actually resorting to reading an instruction or two. So now my latest project, or addition to my ongoing project of telling my story, recording my life as a Middle Aged, Unemployed, Hep C infected, recovering alcoholic, Master’s Degree having dedicated Advocate, mother of 3, grandmother of 2, rescuer of stray animals trying to survive on a meager Social Security Disability at least until I can create some additional income, is to photo document  some of the days in my life.
 I just started today, officially on my bus ride to the bank, the grocery store and back home; a trip that with a car would’ve taken about an hour at most, but took close to 3 hours. But not to worry I promise it’s not going to be some 21st Century version of ‘Christmas in Appalachia”. On the contrary I’ve been spotting sights that if I were clipping down the street at 35 or 40 mph I would never have noticed. The project is new and in the works and I haven’t decided what, if anything, to do with it. I will probably include a pic or two with captions on my blog just to try it out, get some feedback and probably have some laughs, just as soon as I find that battery charger.
Peace,
Nanakoosa
© 2010 Nanakoosa’s Place, authored by 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


>Sick upon sick

>For the past three days I have been sick with an intestinal virus. I promise not to go into details, but I will say it’s been a long time since I actually had a fever. I spent a day in that in and out half awake half dream state that happens when I do have one. I think I may have had some deep spiritual revelations, but I’m not sure. I guess if I did they’re stored in my subconscious somewhere. One conscious revelation I’ve had is that after months of feeling sick from treatment, the old “things could be worse” platitude suddenly applies. As I’m starting to feel better, I feel good. I can actually get out of bed, I can eat (a little) I cleaned my room a little. The trick now is to not get all manic and try to catch up on an entire weeks worth of “stuff left undone”. Goodness knows I’ve learned what can and can’t be put off, done in small bits or (heaven forbid) delegated to someone else.
I also realized how truly important it is to take care of ourselves while on treatment. Our bodies are working so hard to fight off this virus that when another one hits it hits hard. I don’t know if there’s anything I could’ve done to prevent it; plenty of people around here have the same bug. But I do know one thing, I’m going to be much more compliant about taking my vitamins and eating fresh fruits and veggies…and drinking all that tons of water every day!
Here’s to your Health as I raise my glass of water in salute to all who are battling this crappy disease!

© 2010 Jennifer Hazard