Do you have a friend whose living with chronic illness?  Here are a few ways that you can help him/her and be a better friend.
 
Check in.
Chances are you and your friend are connected on social media or see each other at work or school/events occasionally.  You have a casual conversation via post, text or in the hallways.  That’s not enough time for your friend to share their medical update or discuss how things are really going in their lives.  Carve out time to check in with your friend regularly to talk about whatever they want to talk about. You'd be surprise how few people really want to know how they are feeling.
 
Bring a meal.
Your friend works full time and looks great.  That doesn’t mean that he/she isn’t living with chronic pain or symptoms from their illness.  I can work a 10 hour day but the moment work ends every cell in my body is screaming in pain and I need rest.  The last thing I want to do is cook a meal.  Sometimes I’m even too tired to go out to eat.  Bringing a meal to a friend with chronic illness will be so appreciated. It’s a great reason for a bbq or potluck party! Drop it off or stay for dinner!
 
Friendship 2.0.
While limitations of your friends chronic illness may limit physical activities, don’t stop doing things together.  Your friendship will take on a new dimension. Figure out ways that you can continue to spend time together and experience life’s joys.
 
Patience for the patient.
Sometimes you can do everything you think a good friend can do and it still may feel like it's not enough, or he/she (the patient) is not receptive.  Have patience for the patient.  As humans, we aren’t wired to ask for and accept help.
We do not naturally know how to be a patient or live with chronic illness.  It takes time and a lot of trial and error. 

​Don’t give up on us.   It’s during this time we need you most!

Recently I joined an online support group on FB for people with liver disease and cirrhosis. 
It’s been 3 years since my diagnosis and I’ve yet to meet anyone like me. 
I envisioned a similar experience to our online support for people with lung cancer but I was very wrong.

While the name of the group generally matched my personal diagnosis, I learned quickly that I was a rare unicorn. Most members were patients who had histories of drug and alcohol use.  Many others had Hepatitis C or suffered from obesity or a combination of all.  While those patients were welcomed with open arms- I felt less supported.

I found that I was defining myself as drug, alcohol and hep C free.  My liver disease was genetic due to metabolic syndrome and was autoimmune.  It was not caused by obesity or a history of fatty liver disease.  My posts were not responded to as well as others.  Was there no one that could relate to what I was going through?

Then it occurred to me that this online group was not inclusive the way the Lung Cancer Support Community (LCSC) is.  On the LCSC we normally do not discuss how someone got lung cancer or their past medical history.  We discuss the disease itself, how someone was diagnosed, their treatment options/history and the feelings associated with living with the disease or caring for someone with it.  

In that FB support group for liver disease, every conversation began with why and how someone got liver disease and cirrhosis.   People joked about being able to drink again once they got a new liver via transplant.  They joked about side effects of Lactulos and dismissed people’s fears and uncertainties.  

I stayed in that online support group just long enough to realize how spectacular and unique our lung cancer community is.  

Then I clicked on “Leave Group” and never looked back.

I have been living with and surviving liver disease and autoimmune conditions for over 3 years and I still struggle with acceptance.

My brain (self admitted OCD, Type-A) will have some great ideas, goals and aspirations while my body laughs out hysterically in pain....not today brain, my body says.  

I’m an over-achiever. I finish other people’s thoughts and I’m great at reaching goals and setting higher ones.  I never sit still.  I will have very dish washed before I’ve finished cooking the meal. While others nap, I’m rearranging furniture or crafting jewelry or writing a book.  I don’t stop.  I never have.  Until now.

There are days when my feet feel like I’m waking on broken glass.  There are times that I swell and every muscle and joint in my body hurts.  There are times that I have blood sugar issues, high ammonia or GI issues.  There is no cure and there are no pain medicines that I can take to help me because of my liver disease- so I have to stop...and I have to rest.

Rest.  I’ve always equated that word with laziness.  People who rest are sick or lazy and I have never been either...until now.  In between activities, I need to rest.  Activity filled weekends are now time to rest and reenergize if I want to keep problems at bay and continue to live well.  

But Its hard.  This is not the me I know.  My brain fights with my body.  While I am laying down watching a random Christmas show on the Hallmark channel, my brain is thinking about all the places I could be and all the things I could be doing.  

It’s a huge internal struggle.  Do I get used to what this is now, or do I hold out for the me I used to be?


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Cause and effect.  It's something we are taught as babies.  

Lean too far off the sofa and you'll fall to the hard floor below.
Eat too many sweets and suffer stomach aches or cavities.
Touch a hot stove and you get burned.
Run into a busy street....well...you know.

It's human nature to look for the cause and effect- the answer to problems and the "why" to the what happened.

In diseases like diabetes, liver disease and cancer, there may definitely be links to why someone develped the disease.  But that's not always the case.  There is still so much we don't know about the human body and diseases.  For every answer there seems to be a dozen more questions.  

For some of us who are living with diseases, there isn't a clear why to what happened.  
I have stage 4 liver disease.  Aside from some social drinking in my early 20s, I am not a drinker. I had never used illegal (or even legal) drugs in my life. I have never been obese.  Why did I get a liver disease?   

Along with the liver disease diagnosis came one for diabetes and hypothryroidism that turned into Hashimotos.  My immune system seemed to be going haywire and I didn't know why.  Neither did my many doctors.

That was about 3 years ago. 

Since then I've tried so hard to reach out to online groups for support and information.  The Diabetes and the Hashi group I joined were groups that complained about being misunderstood, fatigued and overweight.  I didn't read anything from anyone who was surviving and thriving!  Where were the tips to living WELL with these diseases?  Where were the mentors and where were the people like me?

The last group I joined was a liver disease and cirrohsis group. The people in this group were recovering alcoholics and addicts. They were generally 1-2 decades older than I was.  Many had stages of disease that were earlier than mine, yet they were in such poor health and actively dying.  My disease(s) are stable and controlled.  I plan to live well for a very long long time.

Because I don't fit the sterotypes of these disease I am often frustrated at the lack of support for me.  I do suffer chronic pain and fatigue- but I work full time and I try to be as active as my body lets me.

I get frustrated at other patients too.  The ones who eat or drink to excess.  The ones that smoke or make other unhealthy choices that impact their livers or chance for liver transplant.  I'm trying so hard to LIVE and to me it appears as if they are throwing their chance at life away.

There's a cause and effect to making unhealthy lifestyle choices.  
There's also a cause and effect to playing the blame game.  Someone with no apparent cause for their illness becomes a poor "victim" and someone who's choices may have contributed to their disease becomes the deserving stereotype.

I choose not to be a victim.  And no one deserves illness.

During those times that I was frustrated at the members of those online support groups, I was playing the blame game.  And it's wrong.  I have fought for 14 years to end stigma and blame in lung cancer.
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That's not at all different than these diseases I am facing and fighting now, is it?  

Facebook's "On This Day" reminders, or Time hops, can be fun reminders of your past posts and events.  You can see how much your children have grown and be reminded of things you may have forgotten.

​I love to be reminded of those things, but it's not always good for me.  If you ever experienced the death of a pet or loved one or had a rotten day, you'll be reminded of that too, and that can be a shock to your day.

​My Facebook is filled with patients that I have supported and become friendly with over the last 10 years.  That means that just about every single day I am reminded that someone I grew to care had disease progression or passed away.

​It's overwhelming sometimes.  I admit that there are days, even weeks, that I don't click on that button to "see my memories" because I don't know if I'll be strong enough to be reminded of a death anniversary.

​Thankfully it's not always a sad reminder.  There are those times that I do click that button and I see encouraging messages and posts to me from friends who are no longer with us.  Its as if I'm hearing from them again.  They've popped up to say hello and give me encouragement to continue doing the things that I do.

​Double edge sword for sure but thank you Facebook for reminding us of the good things.

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Happy to report another stable scan!
My scanxiety this time was pretty fierce.

But the good news is the lesions on my liver have not grown! Does this mean they wont ever grow? No. But I'll take stunted growth for as long as possible!

I celebrated with cherry sours and Buffy the Vampire Slayer episodes, took a nap after my 5 hour ordeal to Baylor Dallas and tonight- dinner out with my loves.

I hope they get some petite size MRI scrubs by my next scan!

Heres a pic to commemorate scan-day.

January is Cervical Cancer Awareness Month. 
Did you know that cervical cancer is caused by HPV?  It's a virus and nearly everyone will have it at some point in their lifetime.  
Current estimates are that 75-80% of all people will be infected with HPV at some point in their lives.  WOW!

More than 12,000 women in the United States will be diagnosed with cervical cancer each year, and more than 4,000 of women will die. AND THIS IS A DISEASE THAT IS PREVENTABLE.  

No one should ever get or die from this disease.  

When I was diagnosed at age 22 in 1995, no one told me back then about HPV.  No one talked about how to protect against it. Women, like me, lost their fertility and some lost their lives to this disease. 

So today, in the 20th year of my cervical cancer survival, my 12 year old daughter, received her 3rd and final cancer immunization.  I took pictures.  I had goosebumps.  I announced to the nurse that I was a 20 year survivor and that this moment held so much significance for me.  My daughter would never go through what I went through.  She was safe!



"K", you will never get cervical cancer!"  I said with excitement.  
"What's cervical cancer?"  K asked.
"It's cancer of the cervix- a female body part"  I explained.  How much did she want to know?
"OK, cool.  Can we get Panda Express now?"





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Yep.  With as much enthusiasm as when she was a toddler getting those immunizations for Hepatitis, Rubella, Measles and Chicken Pox...all she wanted was to be done and eat. 

To learn more about cervical cancer and HPV visit CERVIVOR

For parents- click here for a comprehensive study of the safety of the HPV vaccine.

If every son and every daughter were vaccinated, we could wipe this disease off this planet in their lifetime.

Now THAT is a reason to celebrate!