Hepatitis C Virus Damages Brain Cells

Hi All,
I just wanted to share this article and the link to the blog on which it was originally posted. I haven't done a thorough reading yet but from what I've seen it appears to be well written, organized and full of information and resources.






 © 2010 Jennifer Hazard
Originally posted on http://ianquill.blogspot.com/  

Still Searching

I realized it's been a while since I've posted here; there's been a lot going on lately. I am still searching for resources in my area, and still coming up short.
I sent a letter to the head of the Communicable Diseases Division of the City Health Department over two weeks ago.
I have  not received any response. Nice, huh?
I found the contact information for the State Department of Health Services which does have a contact person for Hep B and C,  today's task is to send her an email.
As far as any other of my ambitious plans (because some days even getting out of bed is ambitious) I haven't gotten there, yet.
Lately I've been focused on finding a smaller more affordable apartment, because I can't possibly sustain myself and my son here now that my income is drastically reduced. The good news is I found the perfect place, only 3 blocks from here, and much more affordable. It will be so nice to have even a little money after the rent and bills are paid. The thought of packing and moving is daunting, but it's one day at a time and supposedly the agency that helped me pay my security deposit can help pay movers. The frustrating thing is, it's a week away and I still don't have confirmation of that fact. This is a true test in faith and stress management,, because I HATE not knowing what's going on. It is also, in my opinion, proof that there is a huge service gap in this community. The funds are there, from the recovery and reinvestment act, but for some reason they're not being distributed as they should. Most people don't even know that the re-housing program exists, much less how to access it. It's only because of my experience as a Social Worker/Advocate that I knew where to even begin looking. When I finally found the one agency that manages that program I was initially told that no such thing existed! It wasn't until I sent an email to the Director of Homelessness Prevention Programming, that I finally got a response. I'm sorry but one should not need a Master's Degree in Community Advocacy to figure out how to access services. And that is part of my mission, not only to urge lawmakers to make more funds available, but to ensure that they are accessible, and distributed fairly.
Today is one of those sick feeling days, and I think I'm getting a cold in addition to the usual generalized malaise (Ha ha I love that term) . I feel like I have very little fight in me, but one phone call to The Department of Health and one blog post which will hopefully reach someone who is experiencing similar frustrations with service delivery, or even someone who has adequate resources but knows the struggle of fighting this disease, and motivate people to unite in demanding services tailored for our needs.
Wishing everyone well!
Jenny

© 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/