Recognizing The Joys In My Life

Update:

Word has come in that the cost for the final 12 weeks of HCV triple treatment will now be covered. (I'm doing the happy dance...)

I would first like to thank all the people who have graciously included me in their prayers.  I believe in the power of prayer and that each of you helped in the final outcome.  We could not have done this without your heart felt prayers. 

There are also three very kind, generous, patient and strong willed individuals I need to thank.  They were nothing short of tenacious in their efforts to see this situation corrected.  For this, I am deeply grateful and fortunate. So, on we go with the final quarter of the treatment. 

Joys In My Life

When was the last time you were fully present ... mind, body, heart and spirit ... while reflecting on the joys in your life? 

I start the day by giving thanks for the things that bring me happiness and joy. As I do, I can feel my heart well up with a warmth that I can only describe as being a sacred ceremony. It is similar to what I sensed the first time I felt each of my children move in my belly and when I held them for their first moments of life following their birth.

Reflecting on the joys in my life has not always been effortless.  I remember when I found out I had HCV.  Believe me, I wasn't caught up in the blessings of my life - I was more caught up in the anger, fear, and shame I was experiencing. Friends and medical professionals told me I should focus on the good things in my life. I have often heard myself offering the same well meaning advice to others but it is far easier said then done when someone receives news that will change the course of their life.

During the early months following the diagnosis, my daily ceremony of gratitude slowly manifested into a disconnected mechanical ritual.  It became a mental practice that my heart just didn't feel like showing up for. There was nothing authentic about it. Who did I think I was fooling?

Counting our blessings can be a difficult process to fully show up for when the mind, heart and spirit is otherwise preoccupied.  How many of us have been taught how to truly connect with our heart and spirit?  How many of us have been taught how to pray or even what prayer is?  Within time I realized I needed to reconnect.  The only way I knew how to do this was to immerse myself in the very things that bring me joy.  Simply listing them was only leaving me feeling empty and fraudulent. 

To this day, these are just a few of the joys in my life I reconnect with when life gets too big and heavy for my shoulders:

* I call, text or write to one or more of my children and I take in each moment of the exchange. Once I feel my heart overflow with the love I feel for them I give thanks that they chose me as their mom.  

* I connect with a friend (in person, telephone, text, email...) and I express how much they mean to me and how grateful I am for our friendship.

* I look through old photographs of my ancestors and other loved ones who have moved onto the spirit world. I recall some of the humorous stories connected to them and the many reasons why I am grateful they were in my life.

* I pick up my guitar and play until my fingers can no longer touch the strings because I got so caught up in the joy of creating and playing music that I lost track of time ... and I give thanks.

* I get in the jeep, turn on some favorite tunes and take a drive on the outskirts of town. I love the landscape around here! We have wildlife, evergreens, lakes and miles of rocky hills.  It is a beautiful, peaceful place to live ... and I give thanks.

* I sit in our home and take a good look around me recalling the stories that come with the colorful handmade quilt draped on the wall, or the old stained glass window hanging in the living room. And I give thanks for these artistic pieces of history entrusted to my care. 

My point is this - we have choices in this life.  We can be satisfied to mechanically list the things in our lives we think we should be grateful for OR we can whole heartedly reconnect with these gifts and embracing a new appreciation for these blessings ... and then release.

Until next time ... with care,

Deborah 

Balancing Mind, Body & Spirit

Week 2 of the 21 Day Meditation Challenge

I have entered week 2 of the 21 Day Meditation Challenge - Creating Abundance.  It is going well.  I am enjoying the teachings delivered by Deepak Chopra.

Photograph courtesy of Trey Ratcliff www.stuckincustoms.com

Meditation is certainly one of the tools I have found that successfully works for me not only during treatment but as a key part of my day to day core wellness routine.  It is not a simple task finding a personal daily practice that helps balance the mind, body and spirit, especially when the physical body is struggling due to the side effects of medications.  I find meditation and yoga is more suited to me than a workout involving weights, jogging, or an elliptical machine.

My daily practice has definitely altered since starting the HCV triple treatment.  This is understandable.  Treatment has brought me into territory that can be physically, mentally and even spiritually challenging.  Days when I have a fever, headache, fatigue and the nausea is demanding my attention I will meditate 3 - 4 times a day at shorter intervals.  I find it helps me manage the discomfort I am experiencing and it can quieten some of the bigger waves of nausea that come and go.  Although I know meditation is the best medicine on these days, I do not find it easy to stick with it but once I start I feel the benefits immediately.  Other days when I am feeling stronger I practice a lengthier sitting either in the morning or evening.

Meditation can be useful when I am in the doctor's office or the lab and there is an extended waiting time before I can be seen.  Meditation helps me remain patient (excuse the pun), gives me something beneficial to do, and I can often tune out distracting sounds around me.

Whether it is a walk in your neighborhood with a friend, a 20 minute meditation session, or going to the gym - I hope you are able to find something to participate in today that nourishes your mind, spirit and body.

Until next time,

Deborah

A Few Updates

Here is the latest news.  Some good...some not so much.

Update: November 4, 2012

Thanks to the good work from a representative at Pegassist the funding request they sent into the Trillium Drug Program for coverage of the acromegaly treatment drug has come through.  Yea!

Update: November 6, 2012

Yesterday late afternoon I was informed that my continued coverage for the HCV triple treatment drugs has now also been 'rejected'.  I am 34 weeks into the treatment and this is devastating news to receive at this point in the process. 

I have spoken with the 3 parties involved and I am presently waiting to hear where the problem lays.  Without this coverage I may be forced to stop mid-treatment. As it turns out my body has accepted the treatment quite well up to this point.  To have to stop due to lack of funding at this point in the treatment is beyond sad and frustrating.

Anyone reading this who believes in pray - I welcome your prayers for the funding to come through so I can complete the final 14 weeks. 

*Funding for the HCV treatment is separate from the funding for the acromegaly treatment.

Respectfully,

Deborah  

21 Day Meditation Challenge through the Chopra Centre

I woke up this morning feeling stronger than I have felt for some time.  Even my mind seemed to have renewed clarity.  This may be due to a number of things i.e., the Sandostatin treatment has settled in and is doing its job; also, I am due for the peg-interferon injection tonight so my body may have less of the drug moving through it right now.  What ever the reasons, I am not going to over analyze the gift.

After getting my bi-weekly blood work completed this morning I decided to go and pick up a few groceries at one of our local store.  I can't believe how many people are in the grocery store on a Monday morning!  I just took my time and let the aggressive marathon shoppers have their way.  I was able to get a few items before my "get up and go" meter moved into the red.  Still, I didn't let that get the best of me.  I am going to enjoy every moment of this day and take full advantage of the energy I have left.

So, here I am... updating the blog.

Today, I am sharing with readers that the Chopra Centre started their next "21 Day Meditation Challenge".

This challenge is comprised of 21 days of meditation instruction that will help the participant develop life changing skills and techniques key to living a more balanced and joyful life.

Each 21 Day Meditation Challenge series has it's own theme.  This particular series is on Creating Abundance. This support offered by the Chopra Center is free.  If you are interested, please click on the link 21 Day Meditation Challenge and sign up. 

Even though the challenge started today, it is not too late to register.  

Until next time....

Deborah

Phases & Stages

October 30, 2012

Yes, I am still here…

Has it been worth it?  “…absolutely YES!”

As I enter into week 33 of treatment and review what has occurred during these past 7 months I feel a sense of encouragement … “things are going to be more than okay”.  I have made it over a few life changing hurdles that have reminded me of how resilient I can be.

The hair loss, rashes, soars, allergic reactions, chemical-like burns, facial swelling, vomiting, bleeding, adverse drug interactions, severe fatigue, weakness, fevers, headaches, lack of sleep, upper and lower abdominal pain, lower back pain, muscle contractions, and limited concentration have at times proven to be difficult to endure. Has it been worth it? If the virus is undetectable and does not return … absolutely YES!

Outside of the challenges directly related to stage-4 cirrhosis and HCV treatment the trials that occasionally come with life have added their own sting to this mix. During this process I have received news of my stepfather passing away, then my birth father, followed by my sister. I hadn’t fully mourned the loss of one when news of the next passing arrived.  I fell into a depression for a few weeks.

I contacted a couple of trusted friends who listened and patiently supported me while I talked through it. They kept in contact with me every day for a few weeks and helped me work through what I needed to.  My children proved to be an enormous support as well.  In time I started to feel myself breathing from a healthy place again and I was smiling.

“Things are going to be more than okay.”

It seemed like I just got my breath back when I received a call from my boss.  She informed me that I was no longer employed by the educational institute I had worked for over the past 5 ½ years.  As she spoke on the other end of the telephone my internal dialog kept repeating, “Who does this to an employee while they are on medical leave and part way through a treatment?”

 

Whether a person is able or willing to return to their place of employment once treatment has completed is one thing.  But to implement a decision like this mid-way through an employee’s treatment while they are fighting for their life, in my opinion, is a cruel and unusual practice.  There are alternative options that would not produce such damaging consequences.  I felt like a fool for placing my trust in this person’s word when I was assured before I left on sick leave that this wouldn’t happen.

Days after initially receiving the news of my dismissal I would learn the extent of how this turn of events would affect my medical insurance.  By the end of the month I would no longer have coverage for my medical needs outside of the HCV treatment drugs and even this coverage will cease within 6 months.

  

Although I was relieved and grateful that I would be okay re: the HCV treatment coverage, I also needed to consider how I was going to continue covering the costs for the acromegaly treatment and other drugs being prescribed.  And then there is the dental work needed once treatment is completed. I am in serious trouble. “How can I possibly cover thousands of dollars per month in pharmaceutical bills?” “How will I possibly cover the monthly premium of a new insurance policy?” 

It took me awhile to move past the shock.  When I snapped out of it, I went right into damage control.  I needed to be as quick and aggressive as this treatment.  People rallied together on my behalf and worked with me.  I couldn’t have made it through without them.

The Pegassist Drug Program also stepped in to lend a hand.  They have proven to be an irreplaceable support through all of this.  They also took care of the application to Trillium requesting full coverage (not just the previous 15%) for the acromegaly treatment and other prescribed drugs.



 

“Treatment does not afford its patients the energy needed to fight these avoidable battles.”

One fire out and in no time another popped up. News came in from the pharmacy that the status of my medical insurance coverage was coming up in the computer as 'discontinued'. “How could this be? I was told I had coverage until the end of the month for the acromegaly treatment and other prescription drugs.” 


After using up a great deal of energy and resources, along with some creative thinking with the pharmacist, phone calls and a meeting - an administration error between my former place of employment and the insurance company was uncovered.  With the cooperation of both parties involved the mistake was eventually corrected.  The domino effect this kind of slip-up creates is preventable.  Treatment does not afford its patients the energy needed to fight these avoidable battles.


 

Each day I remind myself, “I will get through this and things will be more than okay. Nothing is permanent.”

Regardless of whether the news is the loss of someone we love, a career ending, or a relationship changing – life goes on and death will remain a fundamental part of it…and then again so will rebirth.

Note: Please refer to November 7th, 2012 posting for updates.


Respectfully,

Deborah