GRAPHIC: You can live with chronic illness and be...

You can live with chronic illness and be happy
or you can live with chronic illness and be angry.
Either way, you're still going to be living with chronic illness.
(Click on image to enlarge.)

I have been struggling lately with more symptoms than usual.

First I got some nasty stomach virus on Mother's Day that landed me in the ER with uncontrollable vomiting and the need for IV fluids and anti-nausea medications.

Then, a week later, a very nasty pain flare-up began. I've been living with a higher than normal pain level and numbness and tingling in my right hand for the last 5+ weeks.  Yesterday I went for an EMG and nerve conduction study.  Hopefully it will shed some light on whether I have a pinched nerve and where exactly it is being pinched: my elbow, my shoulder or my neck.

Between all the pain and other symptoms, the medications I have been taking to manage my pain and fatigue from being in more pain, I haven't been posting here or on the Oh My Aches and Pains! Facebook page. But I have been thinking about how much I miss regular blogging and what a struggle it has been to get back into a regular posting groove.

But I will do it.  I will get there....eventually.

For today, I offer this graphic I created which illustrates my philosophy for living my life with chronic illness.  This is my secret, my tool for making a real life possible despite chronic illness.

I've been trying to explain this concept to a healthy friend of mine and they're having trouble understanding this.

"You're sick," they say, "so how can you be happy about that?"

"Well, I'm not happy about it, but I don't let it get in the way of being happy about being alive and being happy about the good things in my life."

"But you're sick," they continue.  "Do you really have good things in your life?  Your chronic illness seems to have taken a lot of those good things away...."

"Yes, but I am finding new things to be happy about even though I am sick," I reply.

They scratch their head and look puzzled.  To them, being sick means being unhappy, so they just don't get where I am coming from.  Lucky them for not having to have to understand this!

Perhaps you my readers can leave me a few notes in the comment section below with some alternative ways of explain to someone healthy how it is possible to be sick and happy at the same time.

Why I Blog About My Life with Chronic Illness

Me, blogging from my couch

I haven't thought about this subject for quite a while, but I am writing about it for a good cause.  When I am done, I will be submitting this post to a blog carnival over at Restoring Quality of Life: the official blog of the Partnership for Palliative Care.

I've done so much sharing here for over 6 years now.  While I was a bit hesitant when I first started, I honestly don't give this topic a second thought anymore.  In fact, when I'm not able to post as often as I would like, I actually feel like something is seriously missing in my life. And from comments I get, I know my readers miss me too when I post less frequently!

So with the power of hindsight behind me, I put my thinking cap on and uncovered 3 main reasons why I continue to share my struggles with chronic illness so publicly. 

Reason #1: To Connect with Others

Ten years ago, I was a very outgoing and social person.  I loved going out with my friends to concerts, dance clubs, restaurants and the movies.  I loved going shopping all by myself for hours at the mall.  I bowled with my hubby in 2 leagues at our local alley, meeting many new friends.  I was someone who didn't mind driving all around town to meet up with friends and visit interesting places!

Ten years ago, I was a clinical social worker with 11 years work experience.  I worked full-time and I interacted with lots and lots of people every day.  At my last position, I even volunteered for the events committee, planning workplace parties and other fun activities with and for my co-workers.

Then 2004, a trip-and-fall accident resulted in the chronic pain and fatigue of fibromyalgia, which took all of these things, and more, away from me. 

Now, leaving the house to do something fun with my hubby or friends is like running a marathon.  It makes my pain worse, it disrupts my fragile equilibrium and it often pushes me beyond my limits.  The unavoidable increase in pain and fatigue makes me feel physically awful and mentally anxious and irritable. In those moments of increased symptoms, I find myself cursing my chronic illness for the devastating effects it has on me.

So I decided to start sharing stories about my life with chronic illness through a blog and on Twitter.  Like a fisherman's net, I threw myself out there to see if I could connect with anyone.  And through the magic of the Internet and the act of sharing my thoughts, feelings and experiences in a search engine friendly format, I attracted others to my blog and Twitter account.  Over time, my posts and tweets became my ticket to the online chronic illness community. 

And just like that, I started meeting new people and being social again in ways that fit with my "new" life.

Reason #2: To Share the Illness Experience

When I began my "new" life with the chronic pain and fatigue of fibromyalgia, I wasn't quite sure what to do.  Initially, I looked to my medical providers to diagnose my illness and prescribe some kind of treatment that would get me back to normal.  As the weeks turned into months and the months turned into years, it started becoming clear that my doctors were going to be able to fix me. 

Thinking back to my cancer experience 16 years before, I realized that to live my best life with chronic illness, I was going to need the support, wisdom and guidance of other people living with fibromyalgia and chronic pain to help me figure out what to do next. 

In 1988, I was lucky to find a young adult cancer survivor group after I finished my leukemia treatment.  They helped me make sense of my cancer experience and find the strength and courage to put my life back together after it was so completely disrupted.  I learned that sharing about my illness with other people helped motivate me to turn life's lemons into lemonade.  And listening to the stories of others in similar situations to my own, about their struggles and successes, helped me to accept and master my own illness experience.  Positive peer influence and support for me are magical, life-affirming gifts.

So with this new challenge facing me, I started looking for an in-person support group.  Much to my dismay, I had no luck!  Then I realized that if other people living with fibromyalgia were like me, attending a weekly support group might be a nearly impossible task. 

Then a "healthy" friend introduce me to blogging, Twitter and Facebook.  Wanting to make new friends and new connections, I drove in and gave social media a try. 

Six years later, social media is a permanent part of my life.  I've learned how to ask for support and, in return, give support to others in these virtual groups and forums. I simply can't imagine my life without this unique way of sharing my illness experience.  I feel I am truly part of a community that is accessible, convenient and, most of all, caring.

Reason #3: To Give to My Hubby and IRL Friends Some Downtime

This might seem strange, but having multiple sources of support in my life not only makes my life better, it makes life better for my hubby too.  Because let's be honest: the people who live with us and/or interact with us the most really need to have a break from us and our chronic illnesses every now and again. 

Being the social person that I am, it is in my nature to want to share everything with my hubby and my friends.  I'm not shy about asking for a compassionate ear when I need a little understanding, empathy and support.  But since the illness I am dealing with is chronic, i.e. an illness that I will live with for the rest of my life, there is a real risk of burning out my support system from overuse.  I care about my hubby and my friends too much to let that happen.

With support needs that are sometimes big and definitely ongoing, I know I need more than just a few people "in real life (IRL)" to lend me an ear when I need one.  Thankfully I've found the extended support network I need in the virtual communities that social media is able to create and support.  I can access this support any time, quickly and easily, through my computer or smartphone.

Final Thoughts

As with all things in this life, social media isn't perfect.  I've encountered misunderstandings, miscommunications, hurt feelings (mostly unintentional), meltdowns and even the occasional fight.  Social media can be intimidating at first and there is definitely a learning curve.  I found it easiest to observe more and interact less at first, a.k.a. be a lurker.  But since most of the rules are literally unwritten, I found the "watch and learn" approach worked best for me.

That said, for the most part, I've found the chronic illness community to be wonderfully polite, supportive, accepting and caring.  But then again, most of us participating in this community have a shared purpose: to live our best lives despite chronic illness.  I think this really helps keep the conversations and interactions focus and helpful.

Now if only I could find a way to meet all my lovely new friends living with chronic illness in-person!

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.

2013 - NOT A GOOD YEAR

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.

DISTRACTION TO THE RESCUE

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.

DISTRACTION IN MEDICINE

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.

LOSING A FAVORITE DISTRACTION....

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. 

....& GAINING A NEW ONE

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!

NEW YEAR, NEW GOAL

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?

Where #SavePetSociety Is Taking Me....

“It may be that all games are silly. But then, so are humans. ”
~Robert Lynd

I'm not quite sure how to write this post without sounding like a complete lunatic, but I will give it a try anyway.

Over the past three months, I have gotten swept up in a protest movement to save an online Facebook social game.

Yes, that's right, I said a game.  A sweet little game called Pet Society.

Back in 2009, Pet Society appealed to me because I got to create my own pet, and you all know how much I really, really, really love pets.  Then I got to go visit other Facebook friends' pets and complete other in-game activities to earn coins.  With the coins I bought clothes for my pet and furniture and other items to design my pet's house and gardens.  I collected items and traded items, decorated and redecorated rooms to my heart's content and changed my pet's looks and clothes too.

In this game, my pet Miss Hiss could be whatever I wanted her to be.

What I discovered along the way is that Pet Society was a wonderful little world where all the pets were always smiling and always laughing. Sure, when you went to go visit a neighbor, there was an option to fight, but fights always ended with the pets laughing and making up.  There was an optimistic and carefree atmosphere in this game, something I often find hard to replicate and hold onto in real life...especially in today's world.

I believe there is truly something magical about Pet Society.  I admit that perhaps it is hard to explain exactly what that is to someone that didn't play this game.  On the one hand, it reminded me a lot of playing with my dolls when I was a girl, only better since everything was online and virtual, which meant no cleaning up after I was done playing.  On the other hand, the game revolved around and reminded me of all of the important things in life: friendship, love, fun, imagination and creativity.

And when I played Pet Society, it offered a distraction and respite from my life with daily, unrelenting chronic pain.

We all know that change is part of life -- people, things and states of being all seem to come and go.  So I guess on April 15th, I could have just accepted the fact that the game was closing on June 14th and decided to enjoy the remaining time I had with my pet Miss Hiss.  But then I found this Facebook group called Please Save Pet Society, and the next thing I knew, I was working with 32,000 people from all around the world to #savepetsociety.

I am still a sick chick.  Nothing has changed there.  But suddenly through this protest movement, I find myself with an opportunity to make a difference that fits with my life as a person with chronic illness.  To participate, I CAN sit on my recliner in my pajamas in my living room on my laptop computer.  My wonky sleep schedule isn't a problem and neither is my need to take frequent breaks or use my speech-to-text typing program.

The other very odd thing about all of this is how everything has come together surprising well when I have worked on tasks for the group.  For example, I called Electronic Arts (EA) in April and without much fuss got connected right away to someone there who I have been working with for almost 3 months now.  I have also networked on Facebook and Twitter and found contacts and resources that have helped our cause tremendously.

Quite frankly, I don't understand why this is so. The only explanation I can come up with is that the Universe wants me to be involved in this.  Weird, right?

Along the way I have been handed pieces of a puzzle, pieces that needed someone to put them together, and apparently that person is supposed to be me.   And when obstacles have blocked my way, I have found ways to surmount them and keep going, as if someone has been clearing the way for me.

This hasn't always been smooth going and there has been many times when I wanted to just walk away.  But then, as if the Universe really does have a plan for me, I see a glimmer of light at the end of the tunnel that helps me find the energy and strength to keep going.

Yes, I have temporarily abandoned other things in my life, like this blog.  This crusade has taken up a lot of my energy, leaving me with less energy to do other things.  I feel badly that this has affected my other activities and relationships too.

But I do see these as temporary sacrifices that I am making so I can see this protest through to the end.  This is, after all, a once in a lifetime event, and I do feel oddly compelled to be a part of it.  I hope you all can see and understand this too.

Because in the end, wouldn't it be all kinds of awesome to be able to say that this sick chick was able to help bring back a beloved and cherished game to a million players all over the world from the refuge of her couch?

*fingers-crossed*

But if doing this makes you think of me as a silly human being, I'm OK with that too.

Here is where you can see what I have been doing as a part of a big team of other Pet Society players and fans:

*NEW* petition - sign and share, share, share! http://chn.ge/13MVq8c at Change.org

www.PleaseSavePetSociety.org
www.facebook.com/groups/2SavePetSociety
www.facebook.com/PleaseSavePetSociety
www.twitter.com/2SavePetSociety
www.YouTube.com/user/PleaseSavePetSociety
www.facebook.com/WeBoycottEA
http://instagram.com/2savepetsociety/
https://pinterest.com/2savepetsociety/
http://2savepetsociety.tumblr.com/

And check out this video with 2,800 views that I created for #savepetsociety too:

Chronic Pain, @Facebook Games and @EA 's Pet Society #savepetsociety

My pet, Miss Hiss (right),
in happier days

Today I want to talk about something that is near and dear to my heart...

If you are a friend of mine on Facebook, then you know I play social games there.  But this is more than just a hobby or a favorite past-time.  Did you know that research shows that playing video games can help those of us living with chronic pain?

VIDEO GAMES HELP PAIN PATIENTS

Sounds weird, right?  Well games help distract us from our pain.  I know this for a fact!  I get so caught in my games sometimes that I actually don't feel my pain...for like a millisecond.

The immediate effects are temporary, but in the long run, playing video games can help us cope better with pain.  Here is some of the proof:

Video Games Help Treat Kids With Chronic Pain
Video Games Help Relieve Pain
Healing Pain Through Videogames

NO!!! MY GAME IS BEING DELETED

So what sucks as much as life with daily, chronic pain?  Finding out your favorite online game is getting the axe!

My favorite game on Facebook is Pet Society.  EA (Electonic Arts), the company who owns it, has announced that they will close the game on June 14, 2013.

I am so upset about this news that I am volunteering what precious, little energy I have each day to help organize players around the world to protest EA's actions. (As a former social worker, I am good at organizing groups.)

REASONS YOU SHOULD HELP ME OUT

1. Pet Society is family-friendly game, unlike the sex and violence rampant in the games that make up most of EA's line-up.
2. EA bought this game from Playfish, the game's creator, in 2009.  Now they are systematically closing down all Playfish games.  And EA is using the money earned from Pet Society to create more games filled with blood, guns and lewd behavior.
3. This game is beloved by its players all over the world, probably due to the connection with pets. For those who can't have a real pet, their Pet Society pet has become the pet they can't have. 
4. Most of all, I thought gaming companies were supposed to make us happy with their games. Instead, EA is going to kill all our pets!  This is making me very, very sad...and mad!

FOR THE NAYSAYERS

Yes, I know, this is a virtual pet.  Yes, I know, maybe I need to get a life...which I would do IF I could get rid of this disabling and debilitating chronic pain!!!

But please don't judge me.

We all have little, quirky things in our lives that bring us happiness and joy.  And I know for a fact that Pet Society is bringing a little joy and happiness to MILLIONS of kids, from 13 to 92, all over the world.  Kids just like me, who also live with chronic pain and illnesses.

How do I know?  Because I have met, and become friends with, several other sick chicks playing Pet Society on Facebook.

HOW TO HELP

Please support the 20,337 (and growing) members of Please Save Pet Society by:

1. Sign this petition: http://chn.ge/11ffPmA (you don't have to play to sign the petiton, just support our cause!)
2. Join the Please Save Pet Society group on Facebook
3. Like our Facebook Please Save Pet Society fan page 

And finally...

DO YOU KNOW ANYONE AT EA?

I wish I knew someone at EA who would talk to us and try to work things out.  At the very least, we players would like to be allowed to download our pets.  I've been told that our pets actually contain personal and private information, information that Facebook says we are entitled to!

But the biggest reason to download our pets?  They will disappear if/when EA shuts down the Pet Society servers on June 14, 2013.  We all don't want that!

Share with me some of the little, quirky things in your life that bring joy and happiness to you when you leave me a comment.

Life Can be Painful for People Living With Chronic Pain

One of the first lessons you learn when you start living life with chronic pain is that daily life--family, work, home and school--can make your pain worse. All those little things I used to do without much thought, like run errands, cook, clean, shop and socialize, became huge pain-inducing obstacles to overcome when fibromyalgia pain came into my life.

It took me several years to figure out which daily activities made my pain worse. I know for many of us, the list of these activities can be quite long. And because pain symptoms can fluctuate over time, I find myself constantly editing my list--adding new pain triggers and scratching off the ones that are no longer problematic.

Right after the trip-and-fall accident that triggered my fibromaylgia, I tried to continue with my "normal" activities. I constantly pushed my body beyond its new limits to get things done and wound up getting so flared-up afterwards I needed to spend days in bed trying to recover. When enough was enough, I changed my tactic and put off as many things as I could to avoid flare-ups. But that meant a lot of things weren't getting done, which was very discouraging for me.

Thank goodness for the practical pain management techniques I was taught at the Cedars-Sinai Chronic Pain and Fibromyalgia Program in 2006 and for the online classes and groups at the CFIDS and Fibromyalgia Self-Help website that helped reinforce what I learned.  I discovered that once you recognize and identify the daily activities that are your pain triggers, you can almost always figure out ways to minimize their painful impact.

Over the years, I've used these strategies to deal with pain-inducing activities:

• modify the activity to make it less painful, i.e. sitting down to do something instead of standing
• break an activity down into smaller steps that can be done over time vs. all at once
• find people who can help me do the things that are painful
• delegate the activity to someone else (usually my husband)
• say "No." and learn to live life without doing some things

Unfortunately no amount of planning or preparation can help with the things in daily life that are truly out of your control.

Now that I live with chronic pain, I cringe with fear at the thought of any kind of accidents happening to me. This fear is fueled, in part, by some mishaps that have occurred to me since fibromylagia: my shower bench breaking underneath me while I was sitting on it and breaking my foot while taking a big step down from our storage shed.

My biggest fear was realized a little over a week ago when my husband and I were involved in an automobile accident as he was driving us home from the mall.

The accident itself still gives me nightmares. The fact that my pain level has shot up to a 10/10 on several occasions over the last 10 days is quite a nightmare too.  And don't get me started about the numerous trips I've needed to make to the doctor's office and/or the Emergency Room to treat my accident-related symptoms.

My pain and my life have become quite unmanageable since the accident, which is equal parts frustrating, exhausting and frightening.

What concerns me most is that chronic pain can make it more difficult to identify physical injuries from accidents.  Pre-existing pain can mask the symptoms of new injuries and make it more difficult for your doctor to diagnose new problems.

As bad as the accident was, the SUV we were in (and our guardian angels) did a very good job of protecting us from severe injury.  On a safety note, I always wear my seat belt when I am in a car, even thought it can poke at my painy parts.  I know that the seat belt I was wearing literally saved my life. Unfortunately the "seat belt sign" injury I sustained is one of the reasons I'm now dealing with more severe pain.

I'm not sure what happens now.  Among many other things, I'm concerned about how long this extreme flare-up is going to last.

It's going to take all the self-help pain management techniques I have in my toolbox to get me through today.  I'll just have to wait and see what tomorrow brings. In the meantime, I do know daily activities that weren't particularly bothersome a fortnight ago are going back on my list of pain triggers.

I wrote this post because I'm especially interested in hearing from those of you who have been in a situation similar to the one I currently face. I want to hear your suggestions for coping with accidents and injuries that make your chronic pain worse.

Did It Work? The Results of My Hepatitis C Treatment

This is me. Watch the video clip below
to learn if I'm now Hep C free.

VIDEO TRANSCRIPT

Hi, it's Selena from the blog Oh My Aches and Pains! and I'm recording this message today because I have arrived the end of my Hepatitis C treatment journey.

I'm here today to share with you the results of my six month post-treatment Hepatitis C viral load. So drumroll please! I remain undetectable; the Hepatitis C virus cannot be found in my bloodstream. The treatment that I underwent was successful and I am currently Hepatitis C free.

Now part of me is ecstatic about this news, and part of me, I think, is dealing with a little bit of disbelief. I mean I have lived with Hepatitis C for 24 years so it's a little surreal to think that that, moving forward, I'm no longer dealing with a life with Hepatitis C. Now it might take a little bit of getting used to, but I think eventually I'll managed just fine.

I do need to let you know that there is a 0.8% chance that the virus could come back. Again, that is 0.8 percent, but I think you'll agree that chance is very small, tiny, miniscule. In fact, it's so small that there is a group of people in the medical community now, who considered an undetectable viral load at six month post-treatment a cure. Hey, I can deal with a cure!

I also have other good news to report. When I got my viral load test drawn, I also got an A1C test done, which is a test you do when you have diabetes. A normal test result is 5.9 or lower for people who aren't diabetic. My has resulted was 6.3 which is pretty darn good, especially considering how much Hepatitis C interfered with my ability to manage my diabetes. I've been living in 7+ range for quite a while now.

Every day I'm getting a little bit stronger and doing a little bit better. I'm still not back to my pre-treatment level of functioning, but I'm definitely better, much better, then I was six months ago. It might take another six month, or it could take up to two years post-treatment, for me to finally start feeling like I did before I started treatment.

In terms of my chronic pain and my chronic fatigue, unfortunately I haven't experienced any improvement in those symptoms. Maybe it's too early to tell…and it's possible Hepatitis C really didn't have much to do with those symptoms.

But either way, treating Hepatitis C was the right decision for me and I have now eliminated any possibility of developing any Hepatitis C related complications. And that's a good thing!

So now that my journey has ended and I've gotten a good outcome, it's time to celebrate! And since many of you who have been supporting me through this journey are online with me, we're going to have the party online. I'd like to do a Google hangout where we can all join in on a video chat. I'm putting together some party favors for those who are attending as well as some giveaways like I promised.

I just need a little bit of time to get everything together and then we can celebrate!

So if you're watching this, you're invited. Look for more information on my blog or on Facebook about actual day and time.

And once again I want to thank every one you who has reached out to me to offer me support during this journey. It has really helped me get where I am today. And I'm very honest when I say I couldn't have done this without your support. And now it's time for me to pay you back. So if you need my help, you know how to find me. Please don't hesitate to ask – I'm here to return the favor.

This has been Selena from the blog Oh My Aches and Pains! and I am now living life Hepatitis C free.

Does Chronic Illness Mess With Your Emotions?

To be honest, I've been in a crummy mood lately.  There are a lot of reasons why, but I'm afraid if I use this post to list all the reasons, it is just going to reinforce the grumpiness.  So instead, I'm going to explore the connection between emotions and chronic illness, because I think being chronically ill can definitely mess with your emotions.

The Challenges of Chronic Illness

Let's start by looking at the daily challenges of living with chronic illness.  I think it comes down to seven main sources:

1. the physical challenges that come from living in a body that doesn't working properly anymore
2. the reduced physical and/or mental capabilities that are the direct result of being ill
3. the stress and fatigue of living with it day-in and day-out
4. the need to adapt to fluctuating health status and changing medical care
5. all the financial challenges, like huge medical bills and a reduced income potential
6. the repercussions on relationships with family and friends due to the above challenges
7. the impact living with chronic illness has on your self-image and self-worth

Chronic illness can seem like an endlessly deep and dark pit I could easily get swallowed up by.

Some days I cope better; others days not so much.   That's when I use all the strategies at my disposal, like:

• having fun every day
• snuggling with my pets
• getting lost in a good book, movie or TV show
• heading out to my container garden
• dabbling in arts and crafts
• getting hugs and a kisses from my husband 
• connecting with others--especially others living with chronic illness too

The truth is I'd love to just get well.  Or just get Zen enough to rise above my problems to a place where they don't touch me.  Even a brief vacation from my troubles would be nice.  Too bad none of these things are truly possible.

So I muddle through and do the best I can do, which I know sounds cliché, but then really, what other choice do I have if I want to still get some good things our of life?

An Avalanche of Emotions

No matter how well I cope, I am still faced with living a life filled with daily challenges.  At times, life with chronic illness can be very stressful and full of tension, fear and uncertainty. Living under this constant burden, a few emotions are bound to come up!

Some of the ones I've become very familiar with are:

• helplessness
• frustration
• loneliness
• hopelessness
• sadness
• resentment
• irritability
• anger

Most people would say these are "negative" emotions or feelings.  Personally, I don't like to label them this way because it makes harder for me to deal with them.  What serves me best is to acknowledge that all emotions need to be felt and experienced in the moment to make room for the other emotions that will come after them.

In other words, you won't be able to feel the "good" stuff if you avoid feeling the "bad" stuff.

An Increased Vulnerability to Stress

Adding insult to injury, I know many of us live with chronic pain and fatigue conditions that affect how our brains and nervous systems function.  Or should I say malfunction. Our chronic illnesses mess with our bodies' ability to regulate bodily functions like our hormones, neurotransmitters, immune response and sleep cycles.

In short, chronic illness makes us physically more susceptible to the adverse effects of stress.

I know when I get excited about something good happening or get worried about something bad, my body takes those impulses and completely blows them out of proportion.  My wonky nervous system gets thrown into the fight-or-flight response: my heart rate goes up, I get revved up, I'm jumpy, my muscles are more tense, my stomach is upset and I have more problems sleeping. While I can understand this kind of physical response in reaction to worry and stress, I am still taken aback when this happens as the result of hearing good news or anticipating something fun happening.  I mean, how strange is that?!?

Even with the use my coping tool box filled with reassuring self-talk, meditation, use of my emWave and distraction, my body doesn't always calm down.  Sometimes I am forced to just ride it out until the event, feelings or circumstance that trigger the response pass.  In the meantime, I take even better care of myself with more schedule rest, fewer strenuous activities and more time in quiet, calming surroundings.

Rising to the Challenge

As you can see, chronic illness impacts a person physically, mentally, emotionally, spiritually, socially and financially.

It presents a constant stream of daily challenges.  It keeps me on my toes, pushing me to learn, grown, change and adapt as I do my best to cope. It is the source of my bad pain and fatigue days, many unpleasant feelings and my occasional melancholy.

But I do my best to fight back most days, finding the small comforts and pleasures I can still enjoy that connect me to what life still has to offer me despite chronic illness.

But not today.  Today I'm feeling the yucky stuff so I can get to the happy stuff that is just around the corner.

So does chronic illness mess with your emotions too?  Leave me a comment and share your experiences with me and your fellow readers.


Related articles 

• Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do
• Fibromyalgia Pain & Your Emotions
• Managing Emotions | CFIDS & Fibromyalgia Self-Help
• [PDF] - The Psychology of Chronic Illness

Surviving Cold and Flu Season When You're Chronically Ill - Part One

Time flies when you are sick in bed!  January is over and I spent most of last month being sick with the flu or recovering from it. With this season's flu widespread in most states and an epidemic is some, I'm not the only one who has gotten or will get ill. So let me share with you my strategies for dealing with viral illnesses on top of my chronic ones.

Part One: Planning Ahead

Vaccines:  In the past, I have gotten both the yearly influenza and the one-time pneumococcal vaccination for the bacteria family that causes pneumonia, meningitis and septicemia.

I usually do O.K. with the influenza vaccine, except for one year when I developed a massive migraine headache afterwards.  That made me hesitant to get the shot the next year, so I skipped it.  I did muster up the courage to get vaccinated in 2011 and did O.K. once again.

This year, I was unable to get vaccinated in Fall 2012 for the current flu season because of other medical problems I was dealing with post Hepatitis C treatment.  Needless to say, once you get sick, getting the vaccine is pointless.

It is important to know that you should get vaccinated when you are feeling healthy and postpone the shot when you are sick.  There is a vaccine that is administered as a nasal spray that contains live virus (LAIV) and people living with certain health conditions like diabetes should not get this type of vaccination. Due to allergies and severe vaccine reactions, some people should not get vaccinated at all.  You can read more about flu shot precautions and contraindications at the CDC website.

Antiviral Medications:  There are antiviral medications available by prescription only to treat the flu.  They work best when taken within the first 48 hours of flu symptoms.  Which means you need to know what the symptoms of the flu are  and get in to see your doctor right away.  Better yet, talk to your doctor at the beginning of Fall, before flu season starts, and discuss having the medication, or a prescription for it, on hand just in case. Read more about antiviral medications for treating the flu at WebMD.

Sick Day Plan: If you live with diabetes, chances are your endocrinologist has already talked to you about developing a sick day plan.  This is also a good idea for the rest of us living with chronic illnesses too.  Creating a plan involves talking to your doctor about specific actions to take when you get sick.  Here are some question you might ask:

• What symptoms are O.K. to treat with self-care at home and what symptoms need a doctor's attention?
• What symptoms can be handled with a phone call and which ones need to be treated in the office, at the Urgent Care clinic or Emergency Room? 
• What cold or flu remedies do I need to be avoided to prevent drug interactions?
• Should I keep certain medications, like anti-nausea pills or suppositories, nasal sprays, inhalers and/or antiviral flu medication on hand?
• Where should I go for medical care after-hours on the weekend and evenings?

Wash You Hands: The number one way to prevent getting the flu is to wash your hands, especially when you return from public places like the grocery store, restaurants and, yes, even your doctor's office.  The second is to train yourself not to touch you face with your hands, which is how the virus usually gets into your eyes, nose and mouth where it likes to hang out.

Stock Your Cupboards and Medicine Cabinet:  The last thing you want to do when you are sick is make a run to the drug or grocery store.  Make a point of checking on what cold remedies and fever reducers you have, especially the expiration dates, and make a list of what you need at the beginning of Fall.  You may also want to buy a stash of quick-to-prepare sick day foods like electrolyte replacement drinks, shelf-stable juices, tea, canned soups and crackers to have on hand as well.

Next time I'll discuss strategies for coping when you do get sick and how to get better as quickly as possible.

PLEASE NOTE:  The intent of this article is to provide general health education information and is not a substitute for professional medical advice.  When in doubt, consult your doctor for the care that is right for you.

Ready to See Where Life With Chronic Illness Will Take You in 2013?

Wow, time sure does fly!  I can't believe that 2012 is over already.  Really.  I feel like I got so little done and missed out on a lot of things last year because of Hepatitis C treatment.

I am so looking forward to this new year and:

Health Stuff

• fully recovering from Hep C treatment aka chemotherapy #2
• getting the final results of my Hep C treatment in February
• seeing what health issues and limitations I am left with once I am Hep C free

Life Stuff

• getting more things done at home--nine months of neglect and my house is a disaster!
• getting out of the house more often
• returning to a regular schedule of blogging and writing
• heading back out to my container garden and sharing my adventures at The Seated Gardener
• seeing if I can turn my hobbies into an Etsy empire

Now this is going to be a process, like going on a trip.  I start where I am today, point A, and keep moving forward, for the most part.  I don't really have a destination, at least not one I am 100% sure I can reach, so I'm traveling by Zen navigation this year.  I wonder where I will find myself by the end of the year!

As with every trip, there are road signs, traffic lights and rest stops along the way.  Here are the ones I am going to pay extra special attention to:

• The green light:  Every day I am inching closer to my previous level of functioning, around a 30 out of 100, which IS something to celebrate.  Yippee!
• The yellow light:  This is a delicate balance, finding my new baseline. So I have given myself a generous 6 months more of recovery time, plus or minus another 6 months!
• The red light:  We all know how easy it is to over-do things and wind up paying big time for pushing our limits too hard, too fast and/or too frequently. So I need to be CAREFUL and keep using the coping skills that have served me the best: planning, pacing, resting, saying no and having some fun every day.  

You can tell that this sick chick has learned some lessons from 8 years of life with disabling chronic illnesses...

To tame my enthusiasm and avoid getting myself into trouble, i.e. more pain, fatigue and flare-ups, I'm using some new tools this year:

1)  Evernote: this is a cloud-based note-taking and file-organizing program that I can access on my computer, Kindle and Andriod phone.  I use it two ways: for my blogging/writing (posts, ideas and book chapters) and for collecting and storing items of interest and inspiration I find online.  While using it on a computer, you can clip almost anything to Evernote, from a recipe, crochet pattern or photo to an entire article or blog post. You can also attach voice notes and files to your notes.  Plus check out Clearly for reading webpages much more easily.

Evernote has helped organize my thoughts and ideas into one place, and it's a place where nothing ever gets lost!  Plus my stuff can be read, searched and accessed from almost anywhere, which is part of the Evernote philosophy: my data is mine, it is protected and it's portable.

2) Astrid: since I have been ill, I've avoided using traditional "to-do" lists because, well, they make me feel like crap when I fail to accomplish my tasks and goals.  But Astrid takes the list to a whole new level, one where this funny little red octopus gives you gentle reminders and sweetly encourages you to get things done.  Plus Astrid wants you to make all kind of lists, like books to read and movies to see...you know, fun stuff.  And she gives you the option to delegate a task to someone else (yes!) by sending it to one of you contacts.  Watch out, hubby!

I have been using Astrid to facilitate my famous "brain dumps"  and get a handle on all the things I want to do now that I have more energy to actually think about and do things.  Now I just need to be practical and reasonable by setting very generous due dates on the things I choose to work on and letting most other things sit for just a while or two longer.

So what about you?  Are you ready to hit the road and see where 2013 takes you?  What road signs are you going to be heeding more closely this year? What companions are coming along with you that will make your trip easier?  I'd love to hear about your plans, so leave me a comment.

Selena's 2012 Holiday Message

Video Transcript

Hi! It's Selena from the blog Oh My Aches and Pains and I'm recording this video today to show you how I'm doing four months post Hepatitis C treatment.

Now I've got to be honest with you, Hepatitis C treatment really kicked my butt. But I'm a lucky girl because Hepatitis C treatment also seems to have really kicked my Hepatitis C's butt.

I haven't been this sick since, well, when I had my cancer treatment twenty-four years ago. But that's because Hepatitis C treatment in its current form really is just another version of chemotherapy. And let me tell you I've had the side effects and I've had the treatment related problems to prove it!

That said I still really believe that choosing to do Hepatitis C treatment was the right decision for me.

And I'm happy to say that I am starting to feel better. Now I'm not quite back to my pre-treatment level of functioning, but trust me I'm doing much better then I was about four months ago.

I shared with you back on Thanksgiving that my viral load continues to be undetectable. But I'm not pulling out my party hat just yet. I'm waiting get that six month post-treatment viral load result which will determine something called SVR, which is sustained virological response, which is basically a fancy way of saying the treatment worked...and some people are even calling it a cure.

Hey, I wouldn't mind a cure for Hepatitis C. I've lived with it for 24 years and I am definitely interested to find out what life would be like without it.

So I'm looking forward to 2013. I'm looking forward to February and getting those test results.  I'm looking forward to feeling better, to getting back to my pre-treatment level of functioning and finding out what my life looks like, feels like, functions like without Hepatitis C.

I'm happy to say that one of the benefits I'm already seeing from treatment is that my type 2 diabetes is much easier to manage now. In fact, I've had blood sugar numbers that, well, it's been years and maybe even decades since my blood sugar was under such great control. And if my diabetes is better managed because of Hep C treatment then that obviously made it a really good decision from me. 

And that's the thing about Hepatitis C. I know most people say that people living with Hepatitis C will probably die from something other than Hepatitis C. But for me, and I think for a lot of other people, living with hepatitis C is about a quality of life issue. That it does more than just cause fibrosis, cirrhosis, liver failure and liver cancer. It really affects your quality-of-life and causes a lot of other problems, not necessarily life-threatening problems, but things that make life less enjoyable and make you not able to participate as fully in life as you would like.

I've met some really amazing people living with Hepatitis C throughout my treatment experience. And even though I may now be moving forward without Hepatitis C, that doesn't mean I'm leaving those folks behind. I'm a member of the Hepatitis C community and I am committed to advocating on behalf of people living with Hepatitis C until there is a cure for everyone and we can get rid of Hepatitis C for good.

I've been very fortunate that I have responded to treatment. Not all of the people that I've met have responded to treatment. That's why I am committed to continuing to advocate. Because there are great drugs in the pipeline, but there needs to be some collaboration, some cooperation, some working together between the drug companies to come up with an antiviral cocktail that will cure Hepatitis C without all of the side effects from interferon and ribavirin.

So moving forward, that's my goal: to stay connected with the Hep C community and to really be an advocate now that Hep C isn't part of my life and I have more energy to pursue these kinds of things.

Of course, I want to take a the moment to thank everyone who has shown me support throughout this journey. I couldn't have done this without you guys. I couldn't have done this without my husband and my family as well. It's been a rough year and 2013 is definitely going to be better.

I'm glad that I made it through this and I can't wait for a new year and an opportunity to live life Hepatitis C free.

So happy holidays everybody, no matter what holiday you celebrate.

I'm looking forward to planning a party sometime at the end of February/ beginning of March if I get that good news that I'm hoping for in February. And since many of you who have been supported me I've never met in person, we got to figure out an interesting way to have this party online. I'm thinking Skype. What do you guys think? Skype, maybe some Facebook stuff too. I don't know, some chat?

We'll do it; it'll be fun!

Thanks so much and please let me know when I can return the favor.

And be safe, have a great holiday and take some time for yourself. I can't wait for the new year, 2013.

This has been Selena from the blog Oh My Aches and Pains! Happy Holidays!

Confessions of a Night Owl: Living with Delayed Sleep Phase Syndrome

"Dawn is when men of reason go to bed" 

~Ambrose Bierce

Recently I've moved from Perth, Australia to Los Angeles. O.K., so not literally, but definitely in terms of my sleep schedule.  As a result, I've spent the last week jet-lagged and adjusting to a "new to me" sleep schedule.

Let me explain...

Delayed Sleep Phase Syndrome

As I have mentioned before, I have something called delayed phase sleep disorder, more properly known as delayed sleep phase syndrome (DSPS).  As with a lot of my chronic illnesses, the cause of this disorder is not really known, although it does tend to run in families (possible genetic link) and it is associated with depression (not a problem I have.)

The disorder often begins in adolescence or adulthood and is rarely seen in children.

Many people with this sleep problem, including myself, refer to themselves as night owls.  But this isn't a sleep preference.  Studies show that there are actual physiological changes that occur with DSPS that demonstrate the body is actually geared up for sleeping at a later time.

Chronic illness can make this syndrome worse. I personally have had more problems with DSPS during my leukemia cancer treatment in 1988 and currently, during and after my Hepatitis C treatment this year.

DSPS Symptoms

The hallmark of this sleep disorder is the inability to maintain a typical sleep schedule, which for the purpose of this discussion we'll call 10 P.M. to 6 a.m.  Someone with DSPS will naturally become tired at midnight or later and, once asleep, will obviously have a lot of trouble waking up at 6 a.m.

This is a more serious problem then just being late to school or work: not getting enough sleep on a regular basis creates sleep deprivation and actually makes the person more prone to accidents.  In fact, there are numerous studies that show driving while sleep deprived is as bad as driving drunk.

Problems DSPS Causes

The main problem with DSPS is for those who need to maintain a "regular" schedule in order to participate in school or work.  Most people with DSPS try and do their best to muddle through, often taking naps when they can during the day.  They will also try to "make up" for lost sleep by sleeping in on the weekends.

Some will choose jobs on the swing or night shifts that fit better with their natural circadian rhythm.

Chronic illness can push the sleep cycle even further out of whack in people who have DSPS.

For me, DSPS means not being able to fall asleep until 4 to 6 a.m. in the morning and waking up in the afternoon.  Since I am disabled and currently not working, it is easier for me to roll with this and make the best of a not ideal situation.  It also means arranging transportation to my doctor's appointments, especially if they are in the morning, since I don't want to chance an accident caused by sleep deprivation.

My Recent "Move"

Things with my DSPS got really bad during Hep C treatment--I started going to bed in the late morning  and getting up as the sun went down.  I think it was the combination of taking chemotherapy drugs (interferon and ribavirin) and developing several different treatment-related infections, both of which served to throw off my circadian rhythm even further.

I knew I needed to do something about this new schedule which really wasn't working for me.  Here are some of the steps I took to get back to an earlier sleep time.

• I pushed my sleep time back by 3 hours every day over a week's time until I got to my bedtime target of 2 a.m.  This is called "delaying the internal clock." So, for example, if I went to bed at 8 a.m. yesterday, I would go to bed at 11 a.m. today and 1 P.M tomorrow.
• I eliminated naps while readjusting my sleep hours.
• I only slept 8 hours at a time.  Normally, I need to sleep between 8 and 10 hours, and sometimes even 12 hours if I have been particularly active during the day, but I wanted to create some extra sleepiness to help me make the transition so I cut back a little on my sleep.
• I made sure my bedroom was completely dark by using blackout curtain liners.  
• I make sure I get plenty of sun exposure when I get up in the morning.
• I avoid using my computer and other light-generating electronics 1 hour before bedtime.  
• I use the hour before bed for winding down with ambient music, reading and sleep-related tasks: washing my face, brushing my teeth, changing into pajamas, taking medications, etc.

An Ongoing Challenge

I've been feeling pretty out of it since I made my move to an earlier bedtime.  My hubby keeps reminding me that I am most probably experiencing a form of jet-lag and he is probably right.  I just need to give myself more time to adjust and get used to this really big change from living on Perth, Australia time to living on Los Angeles time.

I also need to be super vigilant about getting to bed at my new 2 a.m. bedtime.  It is really easy to stay up later when you have DSPS and I don't want to have to repeat this process again since it is quite difficult to do.

I know with this move I still haven't quite gotten myself onto a "normal" sleep schedule when compared to most other people, but I am happy with where I am at for now.  Maybe with time I can try again and see if this night owl can ever become an early bird.

The hardest thing for me with this new change has been trying to figure out what time of day is best for writing.  Previously, I used to write in the early morning hours.  Now that I am sleeping during these hours instead, it really has been a struggle to find an alternative time for blogging.  So far, it seems the hours after I get out of bed are the best, but this will be something I'll need to experiment with for a while.

Until then, I hope you'll excuse me if my writing and editing suffer a bit during this transition.

PLEASE NOTE:  I am not a medical professional and sharing what works for me is not a substitute for professional advice.  Please consult a sleep specialist if you think you have delayed sleep phase syndrome for a proper diagnosis, medical advice and treatment.

Songs for the Sick: A Chronically Awesome Playlist #NHBPM

Today I'm having a little fun, putting together a list of 18 songs that remind me of my chronic illnesses and their symptoms: chronic pain, chronic fatigue, fibromyalgia, dysautonomia, sleep disorders and Hepatitis C.

King of Pain - The Police

Still Ill - The Smiths

Everybody Hurts - R.E.M.

Doctor, Doctor - The Thompson Twins

Shake the Disease - Depeche Mode

Lime in the Coconut - Harry Nilsson

I Can't Stand Up for Falling - Elvis Costello

Up All Night - The Boomtown Rats

Sick and Tired - The Cardigans

Infected - The The

My Heart Goes Bang - Dead or Alive

Sick of Being Sick - The Damned

Take Me Down to the Hospital - The Replacements

Brain Stew - Green Day

I Wanna Be Sedated - The Ramones

I'm So Tired - The Beatles

Oh My, My - Ringo Starr

Fever - Peggy Lee

What do you think of my selections?  And which of your favorites would you add to my list?  

Let me know by leaving a comment below.

Strive to Grow Where You Are Planted, Despite Your Chronic Illness #NHBPM

This photo was taken in May 1974 by Chief Bwana.

Look at this picture of a tree and what do you see?

If you are familiar with the photographer Ansel Adams then perhaps you'll recognize it. It's called Jeffrey Pine, Sentinel Dome and this tree was perched over the south rim of the Yosemite Valley, opposite Yosemite Falls and west of Glacier Point.

This photo was taken by Ansel Adams in 1940.

I like Ansel Adams and Yosemite, but that's not why I was drawn to this picture.

If you take a second look at this picture, you see a tree that is growing despite an inhospitable environment.  You see a tree surrounded not by soil but by rock, its form twisted, bent by the winds that whipped across it, causing it to grow sideways. Jeffrey pine trees usually grow to be 82 to 130 feet high; this one's growth was stunted because of its location.

And yet it grew and, for a time, prospered.

Due to its location, hiking to the spot where this tree stood was a very popular thing to do in Yosemite.  The earliest photographs taken of this tree date back to 1867.  Once Ansel Adams made the tree famous with his photograph, even more tourists flocked to go see it so they could carve their initials into its trunk.

Unfortunately, this tree died during a drought between 1976-77.  The soil under it simply did not have enough stored water to sustain it.

This photo was taken in 1981 by Chief Bwana.

But despite the odds and the harsh terrain, this tree grew where it was planted.  It just did what it could to adapt to its environment and make the best of the opportunity at life that it was given.  The circumstances were not ideal, but it grew in an amazing place with an amazing view.

View from Sentinel Dome courtesy of You Can Learn.

In telling you the story of this tree, I am encouraging you to try and do the same.

Chronic illness is harsh and presents us with a multitude of obstacles and difficulties. But we have a choice: we can be overwhelmed by the challenges or we can choose to face and rise above them.  It won't be easy, but if we try, I believe we can find good things amidst our trials and tribulations.

Today is World Diabetes Day 2012 #NHBPM

One of my many chronic illnesses is diabetes, so I want to take some time today to acknowledge and celebrate World Diabetes Day 2012.

How I Learned I Had Diabetes

I was diagnosed with type 2 diabetes in January 1999.  To be honest, I don't remember if I was having any of the sign and symptoms of diabetes back then like:

• Frequent urination
• Excessive thirst
• Increased hunger
• Weight gain or weight loss
• Tiredness
• Lack of interest and concentration
• Vomiting and stomach pain (often mistaken as the flu)
• A tingling sensation or numbness in the hands or feet
• Other signs include blurred vision, frequent infections and slow-healing wounds

For people who are developing type 2 diabetes, these signs and symptoms may be mild or absent.

My diagnosis was confirmed with blood tests that my primary care doctor ran, which included an A1c test.

Now I do have a family history of type 2 diabetes on my father's side of the family.  My Grandpa developed diabetes in his retirement years and a cousin developed it as a young adult.  But that doesn't really explain how I got it.  Research is showing that having chronic Hepatitis C (Hep C) infection can trigger the development of type 2 diabetes, especially in people who have a family history of the disease like I do.  According to Science Daily:

...Hepatitis C apparently brings on diabetes at 35 or 40, instead of 65 or 70.

When I was diagnosed I was 34.

The Hepatitis C/Diabetes Connection

Type 2 diabetes occurs when the body cannot effectively use the insulin it produces. Insulin is a hormone made by the pancreas that shuttles glucose from the blood stream into your cells where it is used it for energy.  When this process doesn't work correctly it is called insulin resistance.

Hep C creates insulin resistance.  It does this by turning off an enzyme called AMP-kinase (AMP-K,) which is responsible for maintaining the energy balance in our cells.  When it is turned on, sugar is transported into our cells and energy production in the mitochondria occurs.  When AMP-K is turned off, cells produce fat, which is what the Hep C virus needs to cover the newly replicated viruses it makes inside your cells.  

(I also wonder if this is the reason why so many people living with chronic Hep C infection have such huge problems with fatigue...)

Primary Care versus Endocrinologist

I know that many people who have diabetes never see an endocrinologist or diabetes educator.  Their primary care doctor manages their care and maybe they get sent to a class or two on nutrition or diabetes self management.

Here are some of the benefits I see in having an endocrinologist working with you on your diabetic control:

• every endocrinologist's office has a certified diabetes educator
• most also have a nutritionist 
• they provide ongoing diabetes education and support whenever you need it
• they can give you free samples of diabetes medications to try 
• they can give you a free glucometer 
• they know all the latest diabetes medications and can switch you to something different quite easily

Managing Diabetes is a Big Job

I know that if I hadn't been followed by an endocrinologist since 2003, I would have been in much worse shape!  The biggest problem I've had managing my diabetes has been related to Hep C.  I noticed that when my Hep C viral load went up, my diabetes would start going out of control.  That meant switching my diabetes medications several times over the last 9 years to get things back under control.

Before I started Hep C treatment we discussed what might happen, since treatment can make your diabetes either worse or better.  My endocrinologist sent me home with a sample of long-acting insulin so I could be prepared to start using it if necessary.

And sure enough, I ran into problems with high blood sugars, into the 300 mg/dL range at one point.  Fortunately, the diabetes educator was there to help me learn how to use insulin.  We corresponded weekly via email or phone until we got my insulin doses just right, and it took several weeks to get there.  Plus she called in prescriptions for all the new things I needed: pen needles, lots of test strips, a glucagon kit and a second, short acting insulin.

Thank goodness for my endocrinologist and her team, because I know my primary care doctor just doesn't have that kind of time and flexibility to work with me when things get really wonky with my blood sugar.

Diabetes Education is Important

The theme of this year's World Diabetes Day observance is this: education is of the utmost importance in the prevention of diabetes complications.  

I know this first-hand.  I also know that the best sources for diabetes education are in an endocrinologist's office.

So please, speak up and ask for a referral to see one, even if it is just for a consultation.  Let the experts in diabetes give you the information you need to prevent diabetic complications, like eye damage, nerve damage, heart disease and amputations, so you can live a full and healthy life despite it.  Let them instruct your primary care doctor on what treatment course is right for you and be there to help if your blood sugar starts getting out of control.

I truly believe access to this kind of specialty health care should be a right for everyone who is diagnosed with diabetes.

As for me, we'll have to see if:

• I have cleared my Hep C infection (I'll know for sure in Febraury 2013)
• being Hep C negative has a positive effect on my diabetic control