Thursday, May 28, 2015

Time with my ma



I ASKED GOD
I asked God for strength that I might achieve.
I was made weak that I might learn humbly to obey.
I asked for health that I might do greater things.
I was given infirmity that I might do better things.
I asked for riches that I might be happy.
I was given poverty that I might be wise.
I asked for power that I might have the praise of men.
I was given weakness that I might feel the need of God.
I asked for all things that I might enjoy life.
I was given life that I might enjoy all things.
I got nothing that I asked for, but everything I hoped for. 
Almost despite myself, my unspoken prayers were answered. 
I am, among all men, most richly blessed.

I spent some precious time with my mum who arrived for a visit from Australia for a couple of weeks.  She was very excited about the progress I have made in the past year!  When she saw me in June of last year I was not walking, constantly completely physically drained, homebound and struggling to breathe due to the Babesia co-infection.  This year we walked together around the block and enjoyed an overnight trip to Toronto!!  Although still restricted because of my limited diet and mental and physical fatigue, we were able to do this without a wheelchair or walker and I left my IV pole at home!! 

Out for tea with my ma... xox

I am about 70% better than I was last year.  I still need to pace myself but am strong enough to begin Alinia treatment which is intended to address my brain fog, headaches and mental exhaustion.  Dr McShane anticipates that I will not need to be on IV antibiotics any longer, providing I respond well to Alinia treatment.  I have discontinued IV antibiotics but will keep my PICC line in for a few months yet in case I have a downturn and so that I am able to receive IV treatments from the Naturopath to help rebuild my immune system.  

I will write more about Alinia treatment at a later date as I need to rest now before my children come home from school and I head off to the Naturopath for my 2X weekly ozone therapy treatment. 

Local Paper Clipping





A couple of weeks ago my story was in the local paper.  The reporter did a great job of covering a lot of what we talked about.  We are hoping that awareness of Lyme disease will spread, especially in light of the increasing amount of ticks found in our backyards lately.


Here is a link to the article:
http://www.niagarathisweek.com/community-story/5616116--i-want-people-to-know-about-lyme-disease-/;send=false#.VVTjRKVi34M.facebook



Monday, May 11, 2015

One of our Favourite Songs!

"And my God will supply every need of yours according to his riches in glory in Christ Jesus." 
Phil 4:19

Due to worsening neurological symptoms for me this past week, our children were unable to perform in the John Calvin School fundraiser concert on Saturday.  We recorded the song tonight for our family and friends (note - the pj's and the yawns...)  We have loved this song throughout our journey with Lyme disease and have found it very comforting as it continues to point us upwards for strength each day anew.  The constraints of a disease are no match for our freedom in Christ and it is good for the soul to be reminded of that! Having sung and listened to this song over and over on youtube during the past number of years, it was a natural favourite for our children to perform. Here is the link:
https://www.youtube.com/watch?v=x95Y9Y2KrtQ&feature=youtu.be

My brain fatigues very quickly under stress, in busy or stimulating environments.  I have trouble with my vision and focus.  It feels like a similar type of fatigue that I experienced physically so I am not frightened by it.  I am confident that, with the Lords blessing, these symptoms will also be resolved in due time with treatment.  This week I went to Toronto to Queen's Park for a Lyme rally, attended open house for my children at their school, did an interview for the local paper as well as keeping my regular scheduled health appointments. The affect of these extra activities seemed to accumulate on my brain and I had a constant headache and exhaustion by the end of the week.  With a few days rest and quiet, I have been working on detoxifying my body and have had a better day today.

I was excited about the possibility of being well enough to sing with the children, as this was something I thought would no longer be possible before treatment.  While we are disappointed that we couldn't follow through on performing together, we are excited that the possibility was even entertained, as this is a sign of positive progress.

"Many are the plans of a man's mind, but it is the purpose of the Lord that will stand" 
Proverbs 19:21

Queen's Park - Lyme Awareness


With a group of wonderful ladies from our Smithville congregation, I attended question period at Queen's Park in Toronto this week.  The purpose of this trip was to show our support in numbers by wearing lime green while sitting in the gallery during question period.  Mike Mantha from the NDP asked the Health Minister, Eric Hoskins, what was being done to fulfill his promise (made 6 months ago) to make changes to the guidelines for testing, diagnosis and treatment of Lyme Disease in Ontario.
After question period, we gathered on the grass to take part in a 'take a bite out of Lyme' challenge (hence the limes in our mouths).

"Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, unto Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen."  Ephesians 3:20,21

 The group of us with supportive MPP's

Here is a link to the official press release taken the same day for Lyme Awareness

 Taking the 'Bite out of Lyme Challenge' with Mike Mantha


Below is a link to the question period. If you would like to jump to the specific questions and answers regarding Lyme Disease: Toby Barrett speaks at 34:50mins, Mike Mantha speaks at 49:40mins. Eric Hoskins is the Health Minister and responds to both questions. He is the one to whom we addressed our patient and caregiver statements. Thank-you everyone for supporting us as we continue to advocate for better testing, diagnosis and treatment of Lyme Disease!









    Damon helped me tie ribbons in Smithville for Lyme awareness