Letter from Santa

Hey There kids!!!!
Santa just wants to say sorry there's not much going on this year for the Holidays. Santa's been really tired lately and somehow every time Santa goes to the workshop foggy headed-ness and apathy sink in.
See, Santa picked up a little virus back on the 80's. It was probably one of those damn Elf parties...those guys are crazy! Anyway we were all sharing candy canes and, well things were just a little different back then for Santa.
So now Santa's working really hard to get better so we can all enjoy life and the Holidays like we used to. Unfortunately "working hard" in this  case LOOKS like not doing much of anything, and paradoxically it is. Santa needs lots of rest to help the medicine work.
So Kiddos, Santa loves you all and that's why Santa's doing this nasty treatment...so we can enjoy many more Christmases together!
Peace and Joy to All!
S. Claus


© 2010 Jennifer Hazard

For What it's Worth

Week 40 (roughly) and I do mean roughly. I no longer recognize myself when I look in the mirror. I have lost
 35 lbs, I already have a thin face which now seems skeletal at certain angles. I've cut my hair the shortest it's been since the Punk era. I don't bother to put on make up anymore so the circles under my eyes are making their own fashion statement. You don't even want to know what's going on under my clothes, let's just say I've aged quite a bit this past year.
When I run into people that I haven't seen for a while, I can see the skepticism in their eyes when they ask "are you sure it's worth it? for a coin toss?"
 Is it worth it?
Who really knows? If I achieve SVR of course it will be worth it. If I slow down the progression of the disease, yeah probably worth it. If I don't clear the virus? Who knows? Who knows what progression the virus would've taken if I hadn't treated? This is a quirky disease, it doesn't play by the rules, you never know when it's going to sneak up on you...or not.
But isn't that the way life is, really? Are there any certainties? Decisions have to be made on a daily basis, some bigger than others.When you are faced with a chronic medical condition, some choices have more at stake.
After lots of research, conversations with  others who've been through this, meeting with my doctors and completing all the testing (I'll never forget 15 vials of blood at the lab) I ultimately went with my intuition when deciding to treat. I've learned to trust my gut, most of this education was bestowed upon me as a result of the consequences of not trusting my gut! Once I have made a decision, I typically don't look back. I may end up changing my course somewhere down the road but once my mind is set the wheels are in motion and there's nowhere to go but forward. Granted I've made some, shall we say, unwise decisions in my days, but I've made some damn good ones too. Everything that has manifested is, I believe, part of the lesson I'm here on this earth to learn.
So is it worth it?

Of course

© 2010 Jennifer Hazard

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

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

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

Prisoner of air conditioning, coping with side effects

I hate to be redundant, but it's freakin' HOT! I never really liked air conditioning, I like open windows and a nice breeze; but when a friend recently offered to give me a small room air conditioner I finally broke down. It does help, quite a bit in fact, but I'm beginning to feel like a prisoner in my air conditioned room. I'm trying to avoid feeling useless and unproductive, which quickly leads to depression. I've been writing a lot, reading, and researching resources to help me get moved out of this apartment. All those years of Social Work and Advocacy are paying off. Resources are out there but knowing how and who to ask is essential. One thing that troubles me is the lack of support for Hep C patients. There are foundations for people with other diseases, but nothing, in my area at least, for Hep C.
But I'm digressing, what I wanted to do was talk about the importance of managing side effects. It's kind of a snowball effect (mmmm snow); if you don't manage the side effects, you feel crappy. When you feel crappy, you don't get things done. when you don't get things done, you feel more demoralized and depressed which leads to less motivation for self-care and side effect management, and so on it goes. We can't change the weather but we can do things to be more comfortable. Air conditioning, cool showers, drinking tons of water and taking it easy. Sometimes we have to accept that we can't get everything accomplished that we would like, but it is what it is. If there's one thing I'm learning from all this its how to practice self-care, to ask for help (I'm still working on the not feeling guilty about it part)
It helps me to have reminders around telling me what I should be doing to take care of myself, and its a lot more effective than waiting until I feel horrible and then doing something about it.

A useful and comprehensive guide can be found at 

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Side_effect_Guide.pdf

it's good advice, and can help make this process a lot less miserable. Next time: coping with emotions, or the three faces of eve revisited.
© 2010 Jennifer Hazard
image courtesy of Microsoft clipart collection

I am not Immortal.....

...at least not in the flesh. I won't preach on the afterlife, we all have our own views on that. Fortunately I'm pretty comfortable with mine.
The more time I spend with doctors, taking meds, experiencing side effects from meds and learning about this disease the more my inner teenager is forced to relinquish her firm belief in immortality. Funny because in many ways I was always a rather neurotic kid. I was terrified of illness and death and yet I lived a life style that tempted harm on a pretty regular basis.There came a point in my life when this paradox suddenly made sense. I perceived my actions as some kind of protective ritual for me, a way of knocking wood. You see if I challenged Death and won, it meant two things: a) My existence was validated, I obviously deserved to be here, and 2)I didn't have to feel so vulnerable to every potential disease, accident or fatal mishap that I had spend my childhood obsessing over.

One thing the young and daring fail to realize is that although they may survive one incident and lived to see the sunrise the next day, "validating your existence" and all that; there is a good possibility that something could come back to bite you in the ass 30 years later. For some of my friends it was HIV, then AIDS, most of them are no longer with us. For others it was overdoses, car accidents, liver failure and other alcohol/drug/brain damaged induced mishaps. You can only tease Death for so long before He gets weary and drops the old sickle on your head.
Others of us do the best we can, struggling along, eating healthy, taking vitamins, exercising a little, trying to maintain some level of sobriety and, like me, doing battle with the sneaky little virus that that set up shop in my liver some 30 years ago.

So, no, we are not immortal, but some of us are the "lucky ones" and we have the opportunity to appreciate life and to cherish the time and the people we have been blessed with.

© 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

The Next Step

This post was originally published on http://nanakoosasplace.blogspot.com/ in May 2010 Whenever I sit down to write, whether it be a blog, or journal or my ongoing project (do I dare say book?) I spend some time reflecting on my life, on who I’ve been, roles I’ve played, where I am now and where I want to be in the future. In the moments that I look at the Big Picture, I sometimes think to myself, ‘wow, I’ve had a pretty messed up life”. If I happen to be in a particularly spiritually focused moment I’ll say ‘I’ve really overcome a lot of challenges”. Both things are true, it’s just a matter of perspective. I’ve also accomplished some good in my life. I’ve been a Social Worker most of my adult life and I’ve been able to utilize my experiences and compassion to help many individuals and families. And although I haven’t always been the parent of the year, I must have done some things right because my children have all turned out to be intelligent, creative, caring individuals. I’ve accomplished a lot of personal growth. I haven’t had a drink in 10 years. I have avoided abusive relationships. I no longer obsess about things over which I have no control. I no longer feel the need to plan ahead for the “worst possible scenario”. And I no longer flinch when someone makes a sudden move or noise near me. I’m far from perfect but as they say no one is perfect, nor would I want to be, but I’m generally pretty content with who I am today. As most of us know healing happens in layers and cycles, and it seems to me at least, that the more “issues’ you start out with having the more layers and cycles you must negotiate. So, now I’m into a whole new territory, a new layer, a new cycle. And I am reminded again that there is always considerable overlap between these layers, as most of the problems we survivors have experienced are intertwined. Therefore as we grow through one issue, we are really simultaneously healing other areas of our psyches, bodies and social lives as well. By now I can only hope you are wondering with baited breath what this mysterious “next layer” is. I realized I don’t share much personal detail in my blogs. I write as a survivor/recovering alcoholic, but I stick to generalized topics and themes. And yet ultimately one of my hopes is for my website to become a forum where people can share their stories, because I believe there is great power in the telling, as well as in the receiving, of these stories. My most recent battle, or challenge, is a particularly difficult one for me because it involves consequences of bad decisions I’ve made in the past and because it is something over which I have limited control. About 12 years ago I was diagnosed with Hepatitis C, a consequence of my IV drug use back in the 80’s. At that time, being the dedicated alcoholic that I was, my reaction was to drink as much as I possibly could for a solid year because I knew I’d have to quit soon to save my liver. For those of you who are not addicts, trust me, this logic makes perfect sense to an addict. In a way the diagnosis and my irrational response, was a catalyst to my recovery from alcohol. As you can well imagine drinking as much as possible for an entire year leads to some pretty nasty situations. I ended up in jail more than once, lost my job, my apartment and worst of all my kids. Every time I tried to quit I only made it so far before I was at it again. Finally, as an alternative to a 9 month incarceration I was sent to a residential treatment center. I can honestly say that experience saved my life in more ways than one. Anyway, despite my best efforts to destroy my liver, I have fared pretty well over the past 9 years or so. In the past year however, I found myself increasingly fatigued, foggy and achy. I thought I had fibromyalgia or chronic fatigue syndrome. Then at this year’s liver screen we discovered my viral load was up and some of my other numbers were off. A biopsy revealed a small amount of liver scarring. To make a long story short, my doctor and I decided that since I’m unemployed right now anyway and since the damage hasn’t progressed too far, now might be a good time to try treatment. The treatment for Hep C is Interferon and Ribavirin combination therapy. I won’t go into great medical detail here but I will tell you the side effects are pretty notorious, and for good reason. The worst and most common are fatigue, loss of appetite, foggy thinking and, my personal favorite, depression. It’s pretty much a full time job. So after all the healing of my emotions, my thought and behavior patterns now it seems to be time to heal the physical realm. And of course there’s the overlap. The guilt I’ve felt at having been careless with using IV drugs. The sense of loss of not having the energy to be there for my family in the way I’d like. The identity crisis of going from being passionate defender of justice for my clients to being unemployed and pretty much unable to work, at least during the course of treatment. And yet, there are wonderful opportunities for growth. I have time to do things like write, gardening and crafting, to nurture my creative side. I have to opportunity to give back to myself some of the nurturing and forgiveness I so naturally afford to others but save little for myself. I began this journey on treatment 8 weeks ago now and I’ve already experienced a vast range of emotions, insights and humbling epiphanies. Yes it’s challenging, to say the least, but if I’ve learned nothing else from my years of diverse experiences, it is that if we choose to, we become wiser, stronger more complete beings for ever challenge we survive. Peace and Blessings, Nanakoosa © 2010 Jennifer Hazard Labels: acceptance, health, Hepatitis C, identity, interferon