Monthly Archives: December 2016

My New Year’s Re-boot

Statistics show that not many people achieve their new years resolutions and it’s no secret I’m one of them. I not so bad at setting goals and I’m actually quite good at working toward them as I love the challenge of the process but I’m hopeless at setting out to achieve what I want to. I have a habit of not quite hitting the mark or achieving something I didn’t actually set out to which sometimes can be a bonus and other times not. So 2017 I’ve decided to try a different strategy. I’m going to declare what I don’t want to achieve .

  1. I don’t want my lung function to drop below 40%

How do I plan to avoid this? By exercising almost everyday and trying some wiz bang mind techniques

2. On a lighter note I’m not going to eat only one brand of chocolate. Instead I will rotate brands so I don’t get bored because for me chocolate is good medicine.

How do I plan to avoid this? Buying a different brand each week

Now let’s see how this goes. I plan to document my journey with my lung function on my blog so stay tuned!

light-bulb-moments-cover

So if you decide to set yourself a new year’s resolution here’s a few tips, not from me but the experts:

  • Break it down into small achievable tasks.
  • If there’s more than one goal start with one thing at a time
  • Be realistic
  • Focus on the process
  • Write it down, post it where you can see it and share it with friends/family

Belief Really is a Powerful Thing….

For years I’d read about the power of the mind in healing but had never really experienced it first hand. I had tried a few things like visualisation and meditation but had never really put into practice consistently, not because I didn’t believe, but more because I was a bit lazy and didn’t do all that was required to see results. About a year ago I had what was thought to be a life threatening reaction to a medication I needed to treat a nasty super bug in my lungs. I was in hospital being desensitised to the medication, a 5 hour protocol that is supposed to help the body adjust to a medication by being exposed to incremental doses. Unfortunately it was a bit of a disaster for me and my body experienced severe reactions. I had to decide whether to pull the pin and suspend the protocol or continue. I chose to continue because at the time I had no other treatment options. It was a risk but thankfully I lived to tell the story. A few months after this traumatic experience I was reflecting on the whole episode and thought about the prospect of going through this again in the future. It was inevitable I would need this medication again because it was the only one available to treat this bug in my lung effectively. For some reason I can’t really explain I convinced myself that I would be fine if I were to go through it again. It was literally a moment in time when I decided I would be ok, I didn’t know how but I just felt I would be ok. This became my pattern of thinking. I started talking to my medical team about my wish to continue to be treated with this medication, but they were hesitant and warned me the reactions could get worse. They started to devise an alternative treatment while I continued to reassure them I would be ok. About two months ago after the alternative treatment plan hadn’t been successful my team decided to opt for another attempt at a desensitisation. I was so pleased to have another opportunity  to see if what I felt would happen actually would. Thankfully the team that were overseeing the desensitisation were different to last time, so they didn’t really know how bad my reactions could be and consequently were quite relaxed about the whole thing. I must admit I was a little nervous and momentarily questioned myself …could I be wrong? … but the overriding sense was one of optimism. As I took the first dose I waited in anxious anticipation for any sign of reaction. There was nothing, not one sign of a reaction, and so it continued until I got to the second last of five doses when I started to feel a mild tingling of my tongue and a sore throat. I didn’t panic because last time I’d felt this as soon as the first dose  had gone in my mouth. Thankfully the reaction was only momentarily and I continued on. Last time the reactions grew worse starting with tingling, numbness in the mouth and throat, difficulty swallowing, swollen lips, itchy skin, peeling of the lips, fever and joint pain. What a victory! I had survived and not only that I had only experienced the mildest of reactions. Now of course I can’t prove that this is all because of my mind set but I’m choosing to believe that it played a big part. It now makes me excited about the prospect of what else I may be able to do to improve my health using some mind techniques.

Follow this link to find out what I’ve been doing to continue to work on developing a healing mindset and the positive impact it is having on my health.  https://janeslightbulbmoments.com/2017/08/09/changing-your-story/

For a snapshot of my journey so far go to: https://www.facebook.com/janeslightbulbmoments/

Call to Action for the Australian CF Community

Please support the Australian CF Community by writing to our Health Minister to ask for access to the lifesaving medications Kalydeco and Orkambi via the PBS using the guidelines below. This letter has been copied from an email distributed to the Victorian CF Community from the CEO of CF Victoria. Your letter will help save lives.

AN OPEN LETTER TO THE CYSTIC FIBROSIS VICTORIA COMMUNITY FROM CEO KARIN KNOESTER

(This letter has been copied from an email received from the CEO of CF Victoria)

Dear Friends Rest assured that we are as equally devastated by last Friday’s PBAC announcement on Kalydeco and Orkambi, as you are. Right now it is important that we stand together as a community and push for these decisions to change. So much evidence exists supporting the effectiveness of these medications and so many people are dependent on their provision. We need to know why PBAC made this judgement call. I am asking you to contact the Hon Sussan Ley MP, Minister for Health and Aged Care. Tell her why the decision to defer Kalydeco and reject Orkambi is flawed and why access to these drugs is needed immediately. I invite you to include the following statements in your correspondence: Orkambi

  1. Clinical trials here in Australia and overseas have proven Orkambi’s clinical effectiveness and safety. The drug was seen to not only improve health outcomes, but also quality of life, it reduced exacerbations and subsequent hospital admissions.
  2. We must move swiftly as every day that a person is denied access to Orkambi is another day of potential life limiting lung damage.
  3. There are 1,000+ Australians with cystic fibrosis (CF) over the age of 12 years waiting for Orkambi.

Kalydeco

  1. Kalydeco, Vertex’s first modulator drug, is proven to be a ‘game changer’ for people with the G551D cystic fibrosis gene change.
  2. The unique mechanism of action of Kalydeco revolutionised CF treatment, as it became the first to address the underlying causes of the disease.
  3. The PBAC deferred the decision on whether Kalydeco would be available for approximately 30 young Australians aged 2-5 years with the G551D gene change.  These children are depending on access to this life saving medication.  Without it they risk further lung damage.

General

  1.  In Australia we pride ourselves on a fair and supportive health system. People with CF have now found themselves caught in the middle of a battle between the Government and Vertex over price. Things need to change.
  2. The CF community should not be penalised because of a breakdown in a commercial agreement.

The Minister can be contacted through the following means: The Hon Sussan Ley MP P.O. Box 6022 CANBERRA  2600 Phone: (02) 6277 7220 Email: minister.ley@health.gov.au  We will not stop advocating and seeking answers until every person with CF has access to these life changing drugs.

Karin Knoester CEO

Cystic Fibrosis Victoria