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 Many of the statistics and "facts" were incorrect or outdated.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

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

Coping with limitation-a lesson from Granma Marge

For much of my life I've been one of those people referred to as "people pleasers" or co-dependent" whatever the term of the day happens to be. In my, and all caretakers, defense most of us are oldest children who came from homes where we needed to take on responsibility or at least learn some really clever coping skills at an early age. I've had more therapy than most people and even went on to earn my Masters degree in Counseling so I've made a little progress in "setting boundaries" and standing up  for myself (that learned behavior runs pretty deep, my friends). Having this disease and being on treatment is really challenging my growth in that area.

First of all I think it's really difficult for people who haven't been through this to understand the toll it takes physically, emotionally and cognitively. I have been accused of exaggerating, I've been told that if get out and exercise more I'll feel better (this is true but within limits) and, probably worst of all I've seen the disappointment in my granddaughters faces when they want me to do something like go to the park and it's 90 degrees with 90% humidity and I know I just can't do it. The other day in just such a scenario I had a bittersweet epiphany.

When I was growing up my Maternal Grandmother had cancer. In those days treatment was much less successful and usually involved a lot surgery. I remember seeing my grandmothers belly, criss crossed with scars where she had been sliced open again and again as the doctors fervently chased the cancer throughout her body. It seemed to be always one step ahead of them. There were times that I just wanted to cuddle on her lap and smell her perfume and feel the softness of her cheek against my face, but wasn't able to because of a recent surgical scar. Or times I just wanted her to come outside and play or walk with me and she couldn't. Fortunately it wasn't always that way, I have many fond memories of going with her to the small town one room library where she worked on occasion. Or going to service in the simple white clapboard Congregational Church. I even remember times we'd all drive down to East Beach and spend the day at the ocean, Granma sitting under her big canvas and bamboo sun umbrella.

Anyway, back to the epiphany; my granddaughters had come up with a plan during a short walk to stop at home, pack up a picnic basket and walk down to the nearest park for an outdoor lunch and a hike along the river. I wanted to go, I really did, but I just knew I couldn't. I was already overheated, nauseous and aching all over. I felt so sad at the loss of the opportunity to do this with them my eyes began to tear up and at that moment it was as if I could feel Granma, sitting alone in her dark living room after I'd gone out to play alone because she couldn't come with and I know that at that moment she was feeling the same sense of loss, remorse, guilt and sorrow.
I have never resented her for not being able to do something with me. Part of it was my own mothers gentle explanations of what Granma was going through, and part of it was Granma herself making the best of the good days and even the not so good days. I never for one moment felt that she didn't WANT to do the things I asked of her, and I never for one moment doubted her love for me. Now I pray that I can have the strength and faith to do the same for my Granddaughters.
© 2010 Jennifer Hazard