The Hep C Grinch

You're a mean one - hep c
You’re a mean one – hep c

 The Hep C Grinch – You’re a mean one

The first holiday season after  a Hep C diagnosis can make retreating to a remote cave sound like tidings of great joy. The Grinch stole Christmas, and now Hepatitis C is threatening to steal all your boozles and begaggles and whatever else that you held dear. Like the Hep C Grinch, retreat is exactly what I did the Christmas of 2010. My diagnosis was fresh in my ears and I could hear it pounding in my brain. It certainly obliterated the chorus of all those happy, healthy, non hep c folks who surrounded me.

It’s not that I did not want anyone else to have joy, it’s just that the music of life seemed to be fading to me. I practically pushed it away in my attempt to prepare to die. I was unable to work full time, trying to pay Cobra, and dealing with a mountain of medical bills. I remember budgeting $100.00 to spend on gifts for the entire family. The nights were endless as I roamed the house while my roomie slept peacefully. She had brightened every corner with Santa and angels, nativity scenes and shiny ornaments.

I journaled deep into the night. The darkened living room was quiet except for the sights and sounds coming from the television. Burl Ives’ voice was as jovial as the snowman that he was voicing over. I was curled up, feet on the coffee table, wrapped in that soft afghan that somebody special crocheted years ago. The Christmas tree lights put off a soft glow, illuminating the glimmering balls and homemade ornaments on the tree.

You’re with me, your eyes scanning the scene slowly as though capturing it on your own mental video tape. It all looks the same, but you know something is different. A lot of somethings are very different.

For one thing, that bowl of salted popcorn and plate of cookies have been replaced by air popped corn and some funky granola something or other that you tried to make from scratch. Your mind cannot help but drift back to the easier days. You remember the days when you could eat what you want. Your brain is a little unfocused as you drift in and out of random thoughts of the past and frightened thoughts of the future. That first year of living with a hep c diagnosis can bring out a side to you that you did not know existed. As your best friend, I have a few thoughts regarding how to make your days be merry and bright.

If I could wave a magic wand and make it all go away, I would be thrilled to. But life does not work that way. As a matter of fact, it sometimes seems that life works just the opposite way. The Grinch That Stole Christmas was a story of hardship and tragedy. In the movie, Jim Carey portrayed what can happen when life’s circumstances becomes too painful to bear. However, what the Grinch learned was that love and light can only be found within us.

No matter what our past or future was like, there is no more perfect gift than the present. So let’s take a look at our present. That large unopened box under the tree may be the best gift you’ve ever received. The one that contains untold mysteries of all of life’s treasures? Maybe it has your name on it. You know you’ve always loved presents, even if you pretend not to.

question mark box

What is it that you’ve always wanted? Think back to when you were a child. What did you ask Santa for? Maybe it was a bb gun, Barbie doll, or a bicycle. What did you want to be? Maybe it was to become a fireman, a singer, a truck driver, a hairdresser, or a nurse. Did you dream of one day entertaining or helping others? Did you picture yourself as the bride in a wedding scene who married her Prince Charming? You may have pictured yourself sitting in your home surrounded by loved ones who were all laughing and sharing their lives;  lives that you helped to create. You may have dreamed that your parents would be proud and your family and friends would admire you because of what you had become.

What if I told you that there was a gift for you right now that had everything you ever wanted? Imagine it for just a moment. What would be inside? For me it would be to have a family that were all supportive of one another and understood each other. The kind of people who stood beside you when times were hard.

I do not know what your family is going through right now. My illness has been very hard on my daughter. I ended up moving in with her when I was on treatment. My granddaughters helped to care for me during one of the weakest periods of my life. It was not always pretty. We were all hurting. My family and friends offered what assistance they could. But you and I know that this is a battle we have to walk through alone. Yet even though we were all tested, our love stood firm. Our understanding of hardship grew, and our faith flourished. My little granddaughters, and even their friends, grew used to seeing Nana on the couch through the holidays. Homemade cookies gave way to slice and bake. Extravagant gifts went by the wayside as we simply shared the sweetness of being alive and together.

Even though this is my 3rd year with the diagnosis, I still struggle with the changes. Yes, my body responded to the triple therapy of Telaprevir, Interferon, and Ribavirin. I am living hep c free with cirrhosis which is soo much more than I could have asked for that first year. But I’m still have a childlike heart at Christmas. I want to get that toy catalog out and dream that any special present I want CAN be mine. Don’t you?

The reality is that you can have everything you want just by looking into your present. Today is the only day that you really have control over.

This very minute your mind may be racing to the future with grim… or with hopeful thoughts.

It may be digging around in your past remembering the healthier days, or maybe some regrets that you have.

You can wrap your mind around the present and let your thoughts linger there. Perhaps the gift wrap has a few question marks stamped all over it. It’s still yours. And you are the only one who can open it.

Rocking Around the Christmas Tree
Rocking Around the Christmas Tree

You can be given all of the greatest gifts in the world; everything your heart desires. It is useless until YOU open the gift. It belongs to you. Your doctor, lab techs, pharmaceutical companies, family and loved ones cannot open it for you. See, I know that our dreams are a secret place for the most part. We might be embarrassed to share with others what we hope for, long for.

Sometime in the distant past we may have locked up many of our dreams so tight that we have forgotten what they even were. Think about it over this holiday season. Go ahead and write it down if you want to. Make it a Christmas list. Here’s mine.

Karen’s Personal Hep C Christmas List

More Love

To spend more time with loved ones, getting to know them

To live another year and get stronger

Fibrosis reversal

Make new connections on the internet

To pay off medical bills

Beat Liver Cancer

Get a liver transplant

I know that inside of me is everything I need to receive all the items on my list.

Love is a giving thing. A choice I make when I put others above myself. While I need to be selfish enough to get the rest I need, I also need to make more time for those important people in my life who are such energetic and bright shining stars.

I will live another year and get stronger because I will eat and walk and rest and be wise in my choices. I will see fibrosis reversed because I believe it is possible with healthy protein and a liver loving diet.

I’ve already met new friends on the net who are at all stages of Hepatitis c or cirrhosis. Every story is different, but we are all the same.

Those medical bills? I’m LOL because I have another banding for varices in January and this is an ongoing saga. But I have good insurance now and believe that I will have into my future.

I do not know if I will have the nerve to post this. It’s personal. But I think you will understand what I’m saying. Ah.. friends are nice to have. Thank you. A grown up Hep C Christmas list.

Hepatitis C may try and turn us into the Hep c Grinch. But when we think about the gift of our life, the gifts we have within us, and the gift we give to the world we have no choice but to open up our present. We are really the most blessed ones, because we are forced to look at our present while others can go about with no regard for health concerns.

I’m just wondering as I think about you today. What is in your present? Will you open it? It takes courage to look within. I think you’ll find that there is potential to have your best Christmas yet. You have everything inside of YOU to make your Christmas dreams come true.  I’m pretty sappy sometimes, but it works for me. I’m going to hold a mental image of all of the hep c folks holding hands and singing Rahoo Hooray. We’ll invite the Hep C Grinch too, xoxo Karen:)

 

 

 

Social Security Disability with Cirrhosis and Cancer

Social Security Disability with Cirrhosis and Cancer 

ssdi hepatitis social security cirrhosis ihelpc.com
Disability can have it’s perks.

I just got my approval letter. I am officially on Social Security Disability with Cirrhosis and Cancer from Hepatitis C.  I have mixed feelings right now.  In a sense I’m pretty relieved because I’m not sure what is going to happen next with Hepatocellular Cancer and a liver transplant.  The flip side is that I feel ……  Well, I feel disabled.  That sucks.  It’s making me tired just thinking about it. Really.

This blog will NOT be a how to apply for SSDI. That info is at the end of the page. Just so you know…  I feel the need to mentally gather my wits about me. In my head, I’m sitting across the kitchen table from YOU. Many of you have shared your experiences with me. Maybe my meanderings will help you try and figure out how to approach disability and Hepatitis C with Cirrhosis.

It is important to turn the thought of disability over a few times. Don’t throw out the idea too quickly. Don’t jump in too lightly either. I am surfing around my brain on several waves of thought. Start by asking yourself some questions.

What is my current quality of life?

How does working or not working effect that?

How will I pay for medical costs?

What will my retirement years look like?

What do I want out of life?

Quality of life: Life with cirrhosis is hard. Energy levels can vary. Some days I have done yoga before work. Other days I start yoga and end up scooching across the floor and dragging myself up on the couch for a nap. My battles with fatigue have a wide range. I have pushed myself out of bed with B12 and caffeine. Other days I sleep late and sip decaf while staring out the window…. all day. (H.E.?)

ihelpc.com ssdi
There’s a lot to smile about. Love those filthy boots!

Weekends are great, but household chores take a huge chunk of it. Combining family time with outdoor activities is a great way to soak up some sun and stay physically strong. Lately I am not very “with it”, but I always show up with a smile. Family and friend times are a constant source of joy, but I find that my quiet times are really needed to restore my mental state to one of peace

 

 

Working or not working: My job does add a lot of stress to my current health condition. I push and then I push some more every day during the school year. But you know what? My best is not so good most days, so I push TOO hard. That equals up to this little background hum of anxiety. I end up having an inner argument about whether to rest or push.

By not working and going on disability, I am able to rest and take better care of my body. Staying at home for a while has become a time to zero in on Self Care. I am talking about some quality time to get good sleep, do yoga, exercise, eat well prepared liver loving food, research how to better care for my body, and of course, write about it to my Best Friends!

Mentally, I gorge myself on reading and writing and can spent hour after hour gobbling up research. I especially like to read about nutrition and how it effects the liver. Picture page after page of notes piled by my chair. Got an image of my bed with a laptop and more pages and several books? Haha. I totally sleep with information under my pillow; it might absorb into my brain during the night.

Paying for Medical Treatment: The truth about Disability is that my transplant team requested it as part of my process. Paying for the medical bills now involves the Transcatheter chemo and a liver transplant. I also have to look at paying for immunosuppressant drugs after the transplant. THAT is a lifetime commitment. It can be costly.

It’s about Medical Insurance: As long as I work, the insurance is good. That’s a no brainer. I’ve used all my sick leave and will soon be using Family Medical Leave Act (FMLA). I can still pay for Cobra insurance. Did I say Pricey? Through the roof!

In some states, like Oklahoma, Medicare is not automatic. It takes 2 years to get it after I get on disability! I need it.

social security disability cardinals snow ihelpc.com
These Cardinals got fed in the snow and ice. God will take care of us. xo

Retirement Years: I would love to be able to teach, grade papers well enough, and have the energy to be in the classroom. I plan on working for at least 9 more years. Then a nice retirement and social security will allow me to pursue my other passions in life.

What do I want out of life? I want to be my best self – someone worth knowing. I want to know people. Deep inside where love lives. I want to know my family and friends and want them to know me. I want to camp out under the stars and take long walks. I want to plant more gardens and read more books.

I want to explore places.

The cancer diagnosis shook me to the core about the reality of my days left here. I plan on 20 more years, but I have to live every day as if it were the last one. You know?

Disability can def help me accomplish my goal of having a good quality of life while I battle cancer and get a liver transplant. It allows me to rest instead of work and gives me peace of mind about my medications and bills. It is not a lot of money and will require some serious budgeting.

This rambler of a blog is a pretty philosophical, and hopefully practical look at the issue that we all face. How can we live a good quality life, enjoy work that we are passionate about in decent health, and grow old with freedom and dignity? Some of our choices are made for us. Others we get to choose!

“Do not let what you cannot do interfere with what you can.”  John Wooden

If you are in the process of filing for Social Security Disability with Cirrhosis and Cancer from Liver disease or Hepatitis C to help pay for medication and treatment or transplant, apply online and be patient.  

ssdi Daisies social security disability liver cirrhosis ihelpc.com
Now I’ll be picking daisies. It’s better than pushing up daisies!

I got mine in less than 60 days after filing online. They called me and I got a letter. If you have any questions, please let me know and I’ll try to point you in the right direction.

I may be disabled, but I am NOT disheartened or discouraged. I am not even allowing disappointment to creep in. You know why? Cause we can kick liver disease and still rock on with our best life!

Loving you, xo Karen:)

Some of you may have to go through a hearing and even reapply. I might not have advice, but my friend Alan does. Click the link below   http://www.hcvadvocate.org/hepatitis/living_w_hepatitis_C.asp#2  for more information from Alan Franciscus at hcvadvocate.