Week 3: Mondays - Recharging Your Internal Batteries

Over time I have realized how deeply I am imprinted by the words of my past.

"Don't be so lazy. Get up and do something productive."

"The work isn't going to get done by itself."

"You can't be that sick.  If you're laughing you're well enough to work."

A generation of well meaning individuals who worked hard even on days they were sick believed this was the respectful and responsible way to live a productive life. 

I understand this kind of inner dialog can create guilt and stress in my day, causing me to have set backs in my healing process.

I have learned the importance of sleep even if it means taking naps during the day.  I give myself permission to relax on the days I am low on energy, running a fever and experiencing pain.  I will read a book, listen to some music, meditate, or sit outside in the shade and take in some fresh air. 

What ever I choose, I make it something that recharges my internal batteries ... something that makes me happy.

Dalai Lama  -  5 Mar 2012  -  Public

In today’s materialistic world there is a risk of people becoming slaves to money, as though they were simply cogs in a huge money-making machine. This does nothing for human dignity, freedom, and genuine well-being. Wealth should serve humanity, and not the other way around.

In the Spirit of Wellness,

Deborah 

Week 2: Eat the Fat!

My biggest challenge these past 2 weeks has been coming up with a healthy selection of foods that contain 20 grams of fat and that I can manage to ingest when all I want to do is not eat.  My incentive - if I don’t eat the recommended grams of fat the medication is not absorbed by my body. I don’t want to go through all of this only to fail because I didn’t eat enough fat. 

I can’t believe that this is a goal of mine three times a day!

For some healthy food choices and recipes containing 20 grams of fat, please visit the menu to the right and click on Food Choices Containing 20 grams of Fat.

Be well,

Deborah

Week 2: What To Eat?

Eating healthy is a priority in our home and at times demands some creativity in the kitchen.  Over all vegetables, fruits, various forms of protein and whole grains are our main staples.  

I have started to incorporate green smoothies as a regular part of my daily food intake.  Often for breakfast I have a smoothie consisting of some combination of broccoli, spinach, apple, pomegranate, banana, celery and natural unsweetened plain yogurt. You can add beets, various berries, red cabbage, carrots, peaches or other favorites. I use agave nectar as a natural sweetener which helps keep the insulin levels down.  I will post some recipes in the Healthy Recipes link.

I have also started incorporating more sprouts into my diet, which I have been growing in mason jars.  Youtube has a number of videos that will walk you through the process. I believe the more live food I am able to ingest the better it is for not only my liver but the over all health of my body. 

Make it fun.  Get creative. 

Cheers

Deborah

Week 1: Treatment Begins

As an adult reflecting on the years of my youth, I don’t recall anyone taking the time when I was a young girl to explain the dangers a child can be exposed to in their own home and community. Back then some children were not privy to the risks involved when they were exposed to ‘drug use’ and ‘child abuse’. This responsibility was entrusted to the parents and extended family members who often felt too ashamed or uncomfortable discussing it. 

You didn’t see non-profit organizations, clinics or support groups delivering programs that would provide a safe environment for this information to be publicly shared in our communities. It was viewed as inappropriate. In some cases people believed, "That doesn't happen in this community!".

In the mid-70s the downtown streets of Edmonton and Calgary had a high population of drug addicts, dealers, pedophiles and pimps. Any child living on these streets was exposed to numerous risks including contracting viruses and diseases that the world was not yet aware existed. 

This week I was reminded of those times and as I remembered, I realized I have only experienced 15 of my 53 years of this life time without HCV in my body. No one warned me. No one prepared me.

   

Monday March 17, 2012 – Week 1

As far as the treatment goes, the week has been good.  Going with the information I have had access to regarding this treatment - there have been no surprises to date. 

Monday, March 12^th I started my first doses of  peg interferon, ribavirin, and telaprevir and waited for my body’s response.  Symptoms of nausea, low grade fever, a mild headache and muscle discomfort began within 40 minutes. Throughout the day I followed the schedule of meds, fat intake and plenty of water.

By 11:00 p.m. my body was responding in full swing.  I eventually took 2 acetaminophen, which I had been avoiding. With cirrhosis I've become conditioned to taking medication only when absolutely necessary because many meds are filtered through the liver. The nurse assured me that if the symptoms reach a particular level, the acetaminophen was recommended. By morning the symptoms calmed down and the after effects were more in keeping with the flu.

Some days I need to take each hour as it comes.  I find drinking plenty of clean filtered water curbs the nausea and dizziness. Healthy food helps me from feeling too bogged down. 

I am doing my best to remain physically and mentally active even when it is difficult to get up and complete a simple task like preparing a meal. 

Meditation helps my overall mental, physical and emotional state and I welcome those quiet, private moments.

Until next time,

Deborah

Entry 5: The 'Starting Gate'

We have been hit with the storm of the year in this region of Ontario, Canada.  I think we received all the snow expected for this winter but in one deposit.

I received word last Thursday that everything has been approved by the Ministry of Health, Trillium Drug Program and Pegassist.   I can expect the triple drug therapy to arrive at my door this coming Thursday and each 3^rd Thursday to follow.
 

I have been given the option to begin the HCV therapy on whatever day of the week suits me.  Once I have chosen this ‘start’ day, I need to commit to this day of the week as the injection day. Monday is the day I have chosen. This will allow me potential access to the HCV nurse appointed to my case and/or my doctor should there be a health problem.   Going to the emergency room on a weekend or evening can be a patient’s worst nightmare here.  Also, seeing health-care professionals who are not familiar with your case can prove to be challenging for both them and you.

Until next week….

Take care,

Deborah

Entry 4: Nesting and Waiting

With the recent Canadian approval of telaprevir (Incivek) - one of three drugs used in the new treatment of genotype 1 chronic HCV, each province and territory may vary in how they will process each potential recipient.  Here in Ontario I am told that the Ministry of Health has received a high volume of applications for the new triple therapy.

Your doctor may be able to set you up with a representative from the company distributing one of the drug combinations.  The rep from the company my specialist works with helped me with reimbursement information and coordination assistance. The rep also helped me apply to the Trillium Drug Program. 

With stage 4 cirrhosis complications with my spleen, thyroid, parathyroid, and kidneys have developed over time.  This is not uncommon for some patients who have been infected with the virus for 30+ years.  Other patients can go through life with little to no symptoms. 

My parathyroid levels are high with a low vitamin D count.  I have been prescribed 3000 u.i. of vitamin D3 per day to see if this increases the level.  Platelets are low which is also common in stage 4 cirrhosis.  I am told this number will likely drop even more during the first 4 weeks of treatment.  There are of course complications that come with this and I will address them in this blog if I experience them.

I am working through some physical discomfort and pain by using meditation techniques and/or re-directing my attention.  Sometimes it works and other times…not so much.  At this point I turn on a good comedy which can be the best medicine on tough days.

Until next time,

Deborah

Entry 3: Creating A Healthy Environment

As I warm up to the idea of treatment I am optimistic about what lays ahead in the new year.  I'd be fooling myself if I said I was completely there.  I still have moments of sadness, anger and fear but after the moment passes I realize nothing is permanent and this too shall pass. Many have stepped forward to support me through the process.  This inspires me to do my best each day.

This week I started getting my home in order. One of the known side effects of the drugs is depression.  Instead of waiting to see how I am affected I decided to do what I can to create an environment that supports an uplifting and peaceful atmosphere.

De-cluttering was first on my agenda. I packed up items that I have not used in a few years and have given them away to folks who have expressed a use for them.  Other items I have taken to a 'not for profit' re-sell store.  I  picked up paint to do the walls in warm, bright colours.

Creativity has proven to be therapeutic for me when it comes to working through health challenges. Music, painting, and writing have been like close companions in past years.  I have created a space where I can access all of these modalities and immerse myself in therapeutic play. 

Several years ago when I first began Sandostatin LAR treatment,  music and painting kept me from slipping into a depression.  Some of my best work came from that time in my life.  I was excited to get up in the morning and paint or play the guitar.

I can not see what the future holds for me but I will do what I need to bring forward my best on this journey.

May you find your creativity.

Deborah