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