Wednesday, January 15, 2014

Getting to Know Me, All Over Again, After Hepatitis C Treatment

While distractions might have gotten me through 2013, they also pleasantly postponed me from diving into the new personal health management work I need to tackle.

You see, I reached a new low point with my health last year.  Hepatitis C treatment in 2012 really took a toll, in expected and unexpected ways.  It's been over 16 months since it ended and I finally feel like I have a handle all the challenges treatment presented. 

The anemia-induced exacerbation of my dysautonomia symptoms resolved and my extreme sensitivity to the sun disappeared in about 3 months.  The extreme fatigue and overall weakness got gradually better with each month that passed too.  Within a year's time, I was pretty much back to my "usual" level of chronic illness related fatigue.  Oh, and a sore that developed during treatment finally fully healed at the 15 month post-treatment mark. 

Now I just need to conquer the small intestinal bacterial overgrowth (SIBO) in my gut to get back to my pre-treatment self.  Oh, and get a handle on new problem: high cholesterol.  That was a surprise.  Seems the only good thing about having chronic Hep C infection is that the virus keeps your cholesterol low because it uses the fats in your body during its viral replication process.

As for my diabetes, there's been no dramatic improvement in my insulin resistance or glucose control since beating the virus.  And in regards to my fibromyalgia and chronic pain, there's been no improvement there either.  I am disappointed on both accounts.  However, I did some more research when I didn't get the outcomes I wanted and I remain convinced that my 24 year long chronic Hep C infection played a role in the appearance of these two conditions.

I read an article by Dr. Mark Borigini, a rheumatologist at the National Institutes of Health, and learned that Hep C can flip a (metaphorical) switch and trigger fibromyalgia symptoms.  However, it appears that when the virus leaves, it doesn't turn the switch off on its way out the door.

The same is true for type 2 diabetes.  Science Daily reported back in 2010 that Hep C flips yet another (metaphorical) switch and causes people with a genetic predisposition for type 2 diabetes to develop this condition decades before their family members do.  My paternal grandfather developed type 2 diabetes is his 70's; I developed it at age 33.

Darn inconsiderate Hep C virus, causing damage and not cleaning up after itself on its way out of my body!

Want some good news? A repeat viral load test in October 2013 showed I was still undetectable, which IS good for me in the long run.  According to a new study from Taiwan, having Hep C increases the changes of complications from type 2 diabetes.  Successful treatment of Hep C infection in persons with type 2 diabetes reduced the risk of kidney disease, stroke and cardiovascular disease by roughly 50%. 

So successful treatment helped me dodge some potential future health problems.  I am grateful for that.  And I am sure as time progresses, science will catch up and learn more about what Hep C really does to a person's body, and I will be grateful for avoiding those long-term consequences too. 

In the meantime, I need to get focused on the present and finish my recovery -- from both treatment and 24 years of having my body hijacked and turned into a viral replication factory.  It's been 16 months since treatment ended and the truth is this recovery process isn't over for me yet.  Much like when I completed my cancer treatment 25 years ago, I now need to learn to live in a body that isn't quite the same as it was 22 months...and that is going to take some time. 

2014 is the year I will really start getting to know what my body is like without Hepatitis C.

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Wednesday, January 8, 2014

2013: The Year I Really, Really Needed Distractions

Welcome 2014!
I know I didn't spend much time here last year and I really missed blogging.  But I am happy to report I am ready to dive back in.

As for my absence and what dragged me away from my blog, well, let me tell you, it was probably the best thing that happened to me in 2013.


Last year was not one of my better years.  Successful Hepatitis C treatment the previous year left me starting 2013 at a real low point physically and emotionally.  It left my body battered and struggling with a whole new set of treatment-induced medical problems.  Then, 3 months into 2013, I sunk even lower.  A car accident in March added injury to insult by starting a humongous pain flare-up and adding another new set of problems. 

Six weeks later, I was shocked and saddened by the news that my favorite Facebook game, Pet Society, would be closing in 2 months' time. 

I want to share all about these new health issues with you, but I'm afraid that is going to take a lot of time.  So for right now, I promise to write more about them in future posts.


Time and again, I've written about how distraction is the primary way I cope with chronic pain.

Nothing helps me more than getting lost in a good book, television show or computer game, spending time tending to my container garden, playing with my pets or working on arts and crafts projects.  I have devoted time to creating lists of activities that I can participate in, regardless of how good or how poorly I feel on any particular day. One of my most important rules for living well with chronic pain is Have Fun Every Day and these pastimes, aka distractions, make it easy for me to have some fun each and every day.

Because really, if I have no choice but to live with moderately-severe to severe pain 24/7/365, I might as well figure out a way to have fun doing it, right?  Because life with chronic pain is absolutely no fun at all. And with increased medical problems and pain, I needed distractions more than ever in 2013 to help me get through all the tough stuff.


OK, so this is a little off-topic, but did you know, there is a reference at Wikipedia about this very concept?

Distraction is useful in the management of pain and anxiety. Dentists, for example may intentionally hum an annoying tune or engage in small talk just to create a diversion from the dental surgery process. Topical ointments containing capsaicin, provide a superficial burning sensation that can momentarily distract a patient's attention away from the more serious pain of arthritis or muscle strain.


With everything going on, this was NOT the time to be losing a tool out of my chronic illness toolbox!  Pet Society, a lovable little online Facebook game, provided me with hours of distraction from my chronic pain and fatigue.

As an early adopter of Facebook games, I honestly didn't think that a day would come when my games would be taken away from me.  Clearly I never stopped to consider the business side of gaming or took the time to read the Terms of Service for one of my favorite pastimes and coping strategies. 


I'm not even sure how I got swept up into the #savepetsociety protest movement or how I became such a prominent participant in what would unfold next.  What I do know is that my participation in this protest became a substitute for the favorite distraction I was losing. 

Now protesting wasn't as fun as playing the game, but it showed me how to use some old skills in a new way.

In my former life as a (somewhat) healthy person, I chose social work as my career.  I loved working with individuals, groups and communities, helping them figure out ways to address their needs and, in the process, create better lives for themselves.  This occupation requires a lot of interpersonal interaction, something that I no longer have the energy, concentration and stamina to do.

Interacting with people on a daily basis is what I miss the most about my career as a clinical social worker.

Fortunately, I discovered Facebook, Twitter and blogging in 2008.  Though not the same as an in-person social life, online social media became an alternative way for me to be social when I was able.

During the last 8 months of protesting, I used 1) all my old community organizing skills and 2) all the things I learned about social media to advance our campaign to give our game a second chance.  While ultimately our protest didn't achieve it's goal, our group put up a good and valiant fight and in the process got our message heard by Electronic Arts (EA), the gaming community and journalists in the business, human interest and gaming sectors.

That said, I am glad that things are winding down now.  Knowing this was a time-limiting endeavor, I think I might have pushed myself too hard, breaking my Golden Rule of Chronic Illness:
If you push, you will pay.
If you pace, you can play!


So as I move into this new year 2014, I wonder how I can translate what I was able to do and accomplish through the #savepetsociety protest into something more permanent in my life. 

To be honest, I'm not sure exactly what that would look like.  Perhaps a new role as a "armchair advocate" or some very flexible part-time work on social media campaigns?  Perhaps a place to start is to reread my copy of Women, Work, And Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe to get some ideas. 

While I doubt there are existing work-when-you-can employment opportunities available for us sick chicks, it doesn't stop me from daydreaming about participating in life as much as I am able.  Who knows?  Maybe I can convince someone with the time, energy and resources to help make this a reality for myself and others like me.

It is certainly a good idea, one that would help all us Chronic Babes overcome some of our handicaps and live our best lives despite chronic illness. Don't you agree?

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