Post Treatment Realities part II

still lazing around in bed....

Well, I seem to be at a loss for words, not only because the brain fog hasn't entirely lifted but because I do want to be delicate in how I state what it is I want to say. I will enclose a link to my friend Eva Day's blog because I believe she has summed up so precisely what I seem to be experiencing in my first weeks after EOT. I will include the big disclaimer that everyone's experience is unique, but as with treatment itself,  there are also seems to be a startling number of similarities and shared experiences in the post treatment months.
One of the more inevitable is the anxiety that accompanies the wait for lab results. Of course if we've been clear of the virus throughout most of treatment, chances are we'll be that way a week after ending, after all the nasty meds are still running thick in our blood. It is in the later blood tests that we must anxiously wait to see if we have achieved the goal of SVR. I had requested a one month follow up because I know myself and my tendency to obsess over things like this. My doctor was kind enough to indulge me and I skipped off to the lab last week in hopes of finding some peace of mind; even bad news, as they say, is better than no news. Perhaps ironically the lab tech did every test except the viral level, so yesterday I took myself off to the lab and got another poke in the arm. My nurse Practitioner must have really railed on the tech because when she saw me she was quick to avoid my eyes and left the room. I felt kind of bad for her, a dedicated patient advocate can be very passionate, shall we say, about their work.
Now it's a few days of waiting, again. Thankfully my doctors clinic is affiliated with a large hospital and the blood work can be done on site.
There's a part of me deep down inside that has a feeling that I have not cleared the virus. I don't know if it's a result of a lifelong pattern of coping with the uncertain by always preparing for the worst, or something else. It may be the fact that I still don't feel "better", at least not as "better" as I'd like to be.
Whatever it is, I have learned through treatment and other challenging life experiences, that worrying changes nothing but one's own contentment and the best we can do is, as they used to say back in the day, is to "keep on truckin"
Wishing You all a happy, restful weekend!

Here's Eva's link  http://evaday.blogspot.com/2011/03/hcv-and-next-taboo-shadows-beyond.html?showComment=1300984661807#c2683809668847465530



© 2011 Jennifer Hazard

The Journey Ahead, keep pushing!

"When you find yourself in Hell, just keep going" Winston Churchill

What better advice for anyone of treatment! I initially thought of childbirth when I first saw this quote. For anyone who has had a baby you know there comes a point where it's pretty unbearable, but you realize the only way out is through. So you push through the pain to get that baby out! In that situation there's no option to stay put in your misery (as with depression, addiction or other slower painful experiences) Treatment is similar in a sense. Of course there is always the option to give up, to say forget it I can't take this anymore I'm quitting", but ultimately most people decide that since they've already endured some misery they might as well keep going hoping for a positive end result. Just as we get through childbirth one contraction at a time, one push at a time, we get through treatment one day at a time, one week at a time, sometimes one hour at a time...but as long as we keep pushing on we find ourselves out the other end reborn and with a whole new stage of life ahead of us.
I'm saying this in hopes of providing some encouragement, some "labor coaching" for all of you who are in that dark place where you question your ability to continue. Breathe deep, find a focal point and remember at the end there is a new life.




© 2011 Jennifer Hazard

EOT...Continued

Hello Fellow Hep C-ers.
 As I mentioned in my last post I was a little dismayed by the grindingly slow return to some kind of normalcy, or at least functionality not being one to be known for "normalcy"
As of today a month has passed since my last interferon shot and I can say I am starting to feel some bits and pieces of Jenny waking up from their 11 month slumber, slowly squinting their eyes against the light, stretching our limbs and thinking about what lies ahead.
For the past week I have been out of the house at least once daily, I have done some house work at least once daily and have gotten caught up on some paperwork and correspondences that I'd been putting off for quite some time. I have gone out for coffee and on other small journeys with friends and family and I spent an entire day protesting in Madison Wisconsin.
That may not sound like a lot to most people, or to people who haven't experienced health problems, but as many of you know this is a virtual flurry of social activity compared to the past year. As I write this I feel ready to doze off. I just completed a post for my other blog and had spent the morning at my daughters house, after walking quite a distance to the bus and them came home to a delicious meal. As I mentioned in my last post this is a matter of balancing renewed activity with proper self care and rest. I can see how it would be easy to suddenly jump into action only to end up worn out or sick. as it is I've already had an ear infection and now have an abscessed tooth and am on antibiotics. But some of that is to be expected, even under "normal" conditions...and so we move forward, one day at a time, re-emerging into a new phase of life

© 2011 Jennifer Hazard

Post Treatment Realities

EOT, Post Treatment, "when I'm done with treatment.." While we are in the midst of treatment these phrases dangle before us like a piece of candy on a string, just out of reach but promising sweetness. I really didn't know what to expect for myself after treatment. I have read other peoples' experiences. I have read the materials provided by the pharmaceutical companies and medical professionals, which I have come to realize are Pollyannishly optimistic. My general experience throughout this process is that we all experience treatment a little differently although there are many many similarities.  In the support groups I follow often one person will ask about a befuddling symptom, certain that they are manifesting bizarre and unusual reaction, only to have a half a dozen others respond with similar stories.
To be honest I hadn't looked into the post treatment stories very thoroughly. I figured I'd cross that bridge when I got to it since life on treatment was basically best lived one day at a time. I knew I wouldn't immediately "bounce back", that it would take time to rid my body of the poison I'd been ingesting and injecting  for the past 48 weeks. I knew it would take time  to renew my body from the strain that it had endured, the anemia, the weight loss and  the compromised  immune system but beyond that I didn't have much of an idea of what to expect.
Here I am 10 days after my last shot, still not knowing what to expect from one day to the next. My energy level is improving slowly, I tend to overdo it and wipe myself out by capitalizing on the newfound ambition. My appetite is back and making up for lost time and although my mouth is still a little sensitive to certain foods, I'm finding my taste for variety is coming back. My mood has improved greatly...well until yesterday, that is.
 I had been developing pain and goo in my ear for a few days. I put off going to the doctor because I knew I'd be over there on Friday for blood work, and also because that's what I do, I procrastinate. I put off those visits to the doctor until I'm really miserable. By Friday my ear was visibly swollen and incredible painful, my neck jaw and head all hurt as well.
This occurrence  took some of the air out of my sails and seriously dampened my mood. "Haven't I suffered enough in the last 11 months?" and "Can't I just start feeling better?" "waah wahhh"
 I realized that treatment doesn't really end when you stop taking the meds. There's going to be a transitional period while I detoxify and regain my strength and hopefully my sanity. Like most things in life we hope treatment will be linear, predictable and finite; and like most things in life it is none of those.
And like all other things in life, we take it one day at a time, we do our best and we do it better with the support of others.


© 2011 Jennifer Hazard

Guest post by Anna

Hi All,
Here I am done with treatment, although still feelings the effects of Thursdays shot, looking forward to see what the future brings. I'm feeling optimistic, knowing I can't feel worse than I have for the past 48 weeks, ha ha!
 I wanted to share the link to this post by Annmarou at Heppy Countdown.  First of all she has a delightfully wry sense of humor that is valuable for anyone on treatment or puzzling with this disease. Most importantly, however, is Anna's Strength and Courage when questioning and confronting her doctor. Anna's story is a shining example of assertive self advocacy. It's so important that we remember that this is our health were dealing with and we are required to make choices that can be life altering. If our medical providers fail to provide us with adequate information, choices and emotional support, it is our right to ask for what we need.
One more note, I know it's not always easy to be assertive, to speak up for ourselves, I wasn't very good at it until I hit a certain age; in that case it may be an option to have a trusted friend, family member or professional advocate (if your community has them) accompany you to your appointments to ensure you are receiving the care that is your right.
Peace,
Jenny

© 2010 Jennifer Hazard