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

My Hep C moving experience

Hello All,

I'm enclosing a link to my most recent post on my Nanakoosa's Place blog because it has relevancy to my experience on treatment and how tx effects functioning, decision making and major life events.  The consequences to our health, emotional state and ability to function become a vital part of any major decisions we make while on treatment and it is often a challenge to weigh the options and anticipated outcomes.
I have been pretty sick for an entire week now and am just coming out of the fog enough to get back to what I enjoy doing; writing and advocating.

May you all be well and take good care of yourselves.


© 2010 Jennifer Hazard

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