Thursday, June 4, 2015

Fat Girl

This week I listened to the audio version of "Fat Girl Walking" by Brittany Gibbons.

(Hello Audible! I adore Audible!)

So. This was my first introduction to Miss Brittany. How have I not known about her?!?!
 Stuck under a rock in the woods? Probably. I'm a little sheltered.

I quite loved it.  It's a bit vulgar and crude humored at times, but its raw and honest and there are super nuggets of wisdom and insight that caused me to laugh out loud in public and  talk to myself like a crazy person.  As a fellow Fat Girl, I recommend reading this gem.

Several chapters I re listened too....and will again.

My greatest take away for today?

 1)Take care of me. Invest in me now. When I'm a size...whatever....not later. It's not my skin and size that makes me miserable, sad, lonely, check out, hide out, wear leggings too often and other ill fitting clothes....its me, my mind, my heart and the way others judge or how I FEEL judged all. the. time.

2) Affirmations work. I've known this for yeeeears but again knowing and doing are two different things. Yes, it feels ridiculous to say kind words aloud about myself, but writing them out is effective too. And..... Hello, it works!

3) Fake it until you make it.

I'm working on 1 & 3 today. How? The little things. I'm a skirt and tall gorgeous shoes with a necklace and a bit of make up. My hair is washed. Hot damn!!These may seem trivial, common sense nothings to some, but when a person has given these rights up over time, well they are amazing when put in practice again.

Fake it Lady, Fake it!

I Used To....

I used to blog...write...dabble in photography and share it all here. I've missed you Readers! I've missed you Blog! I've missed the release, the self inquiry that comes with writing.

So here I am, putting "I Used To...." behind me.

Tuesday, March 3, 2015

Everolimus/Afinitor Trial.....the Verdict

After much research, discussion and heartache we have decided NOT to enroll Rhett in the Clinical Trial.

Afinitor is a chemo drug. Has been used for years in the treatment of Oncology. Do I really want to risk Rhett's immunity? The suppressed immune system, the mouth sores, the slow healing, the risk of respiratory infection, etc etc are all side effects that I do not want Rhett to experience if he doesn't have to.

The next challenge is that Novartis does not provide any travel allowance for Rhett. This trial would require us to be in Vancouver weekly for 12 weeks. We live a province away. Logistically that is difficult. The effect this would have financially, time wise, and on our other child is huge.

Couple these two topics with the fact that it is a double blind study.....well, it wouldn't be beneficial to Rhett.

These decisions were very hard to come to terms with but now that we've made it, I am ok with our choice. Sometimes I just need to listen to my inner voice, or the Higher Power that is putting road blocks in my way. Yes with great effort I could work out the financial and travel concerns, but at what cost to my family. At what cost to Rhett? The fact that there were so many road blocks and concerns tells me that this Trial is not meant to be for Rhett. Sometimes, I need to just tune in and be grateful for what we have.

Having said all that, the TSC treatments Rhett is currently undergoing will remain as the status quo.

Tuesday, February 10, 2015

Uncertainty & Hope

Tuberous Sclerosis touches are lives even when Rhett is doing well.
We are awaiting a NeuroPsychology assessment. It'll be a long day for Rhett.
"A watched pot never boils" well, a watched email account never receives either.  I'm anxiously hoping an email from our neurologist will appear in regards to a Clinical Trial.

So many questions! So little patience!!!

Stay tuned....

Wednesday, January 7, 2015

Here I Am...

The children are downstairs quietly playing, dinner is in the oven, the "News" is on TV (I rarely watch as it is so negative. More politics? Ok. Less murder and mayhem.)

These days our life consists of homeschooling, living in the woods, solo parenting and working hundreds of kilometres away from home (Brad) and all that goes with these events.

Healthwise....the boys are doing well. All things considered. Due to the TSC, Rhett will always be under our watchful eye and consequently there are tests and results and therapies and delays and strategies and struggles. Life with "The Maybe Disease" as Brad and I call it.

Warner continues to shock and amaze us with his brilliance, interests, literal views, and struggles. There's always a struggle with any child however, Warner's have declined. Age? Therapy? Meds? Who knows. A combination of the three? Probably, whichever, I am grateful.

Life is a blessing and a trial. The trial area is in my head. I know that. However, it's still real. Loneliness, purpose and frustration are always close to the surface for me. So....the flavor of this blog will change as compared to before as the boys are older, stable, and I am in a different season, per say.

Follow along and comment, if you will.

Best wishes,


Wednesday, March 19, 2014

Epilepsy Questions

Recently, I posted on my Facebook page for my friends to ask any question about seizures or epilepsy...."no holds barred". I was surprised at what some people were wondering about. A great group of questions that I would never have considered!

Soon the perspective....will be shared. Until then, here's a look at the questions.

  • What memory does a person have of going through a seizure?
  • What are the physical side effects from these?
  •  Is it painful?
  •  What is it doing to the brain each time it happens?
  •  What is it doing to the brain each time it happens?
  •  How long do they last and does the person know they are having one

  •  What is the best course of action an observer can take to support the person enduring a seizure?
     Does the condition often either lessen or magnify into adulthood? which is more common to happen?

    Will it ever lessen?
    What are the long term effects of the medication? or the seizures should medication not be taken?

  • If a person is known to have seizures, at what point would you still need to call for medical help?

Now, the answers will be based on my experience through Rhett and knowledge from our Neuro team and Epilepsy Calgary. I'm not saying I'm an expert by any means but I do have some knowledge to share. Hopefully it's helpful. 

Saturday, March 1, 2014

March is Purplicious

Purple Day is March 26th. Started by the innovative & adorable Cassidy.
This year we will be doing our part to "Be Like Jelly & Spread Awareness" by posting interviews of others affected by Epilepsy aaaaand sending Purple gifts to friends. 

Want to join in? Either for an interview or a purple gift or both? 
Send me your email!