Sunday, May 15, 2016

Good-Bye... FOR the Heart.

My last post was back in October 2015 when this whole roller-coaster ride started... 
Much has changed.

Quick catch-up medically speaking:

-YES, I do have confirmed Long Q-T Syndrome, LQTS1 to be specific

-My children and parents were tested... The rest of my family (brother, Dad's brother's etc...) will have to be too. We had some MAJOR stress while waiting for the results to come back, funds were not transferred to the US government for their tests to be done in Maryland and it was delayed by almost another month, waiting... 
Treading water, waiting for answers bites, BTW. 
Thankfully in the middle of this the Children's Hospital of Eastern Ontario (CHEO) won a landmark case so that testing can start for other's here at home. 

-ALL four of my children have inherited the mutant gene, there was a less than 6.5% chance they would all have it, but... they do. My Dad also has it, so it was inherited through him. 


I am now stabilized on beta-blocker #2 and have been released from The Heart Institute care for the next 2 years. 
We are applying to a program through CHEO to get an AED (automated external defibrillator), with 6 of the 8 people under our roof having LQTS1, we are considered high-risk. We looked at getting one ourselves but they are farrrrr from cheap. We already need to find funds for Medical Alert for everyone and costs of appointments (time lost off work and PARKING, gah!) the relief of having this covered and knowing we'll have one on hand is -priceless- to us. 

The boys are just starting... 
2 have started beta-blockers and 2 are waiting to go for stress tests and start medication. The big rush is for the younger 2 who also have ADHD, and ADHD and ODD which means they need to take medication that could trigger the LQTS. Boy #3 has been having particularly bad issues since being taken off his medication as a precaution when this all started. Household damages, Suspensions and other school issues, Police involvement and Youth Services counselling level issues... fun times. We are exhausted, but we are on it. 

LQTS is a juggling act and it's a super hard one when you're dealing with children. 
Sit in the office discussing with one of the 3 doctors involved and every-single-little decision is guessed and 2nd and 3rd and 4th guessed because NOBODY (doctor or parent) wants to be THE one that made THAT decision when/if a 13 or 11 year old dies later. With adults the issues etc... are laid out and ultimately the patient has the final say. If the patient dies, it was their choice and everyone else can, albeit it uncomfortably, wash their hands of the decision when/if it goes bad. 
No stress, No pressure... nope. 

We also have had a buuuuuuuunch of other stuff going on, most of which we have kept to a very small circle of people but now that we're actually heading into court cases it'll be out and taking up all our time.
We are dealing with 5 cases right now triggered by the 1st. 
--> My Ex, the boys birth father, has asked to have support payments changed and also for visitation, after 6 years of no contact... This cracked open a few things. The boys have been afraid to go to school, having nightmares etc... much the same as when visitation stopped because of death threats and the CAS getting involved.
Though we were planning on last-name changes for them, end of the summer, before the renewal hand-fasting we have had to change that plan. 
-->Greg is petitioning to adopt them, making up the other 4 cases. 
This is something we have dreamed about and wanted... the boys too, but decided to let well enough alone and just change their names. The bees nest has been poked now and not by us so we are forced now to move forward for the health, safety and sanity of the children. 
We have been wading through the system and it's been a long sticky go but we're getting there. The boys each saw a separate lawyer and signed paperwork saying they would like Greg to adopt them, THIS-is-what-they-want. 
The other issue here is IF I ever were to succumb to the LQTS myself, Greg has no custody. Arthur is 18, with Greg's help and my parent's he could apply for the other 3, it would be long and messy. In the mean time they could wind up in foster care and/or back with thier birth father. Not Good. 
WE ALL NEED THIS DONE for everyone's sake. 
It's the right thing to do. 
The stress and time involved has been incredible... leading to other issues, such as my bladder prolapsing again and infection after infection because of that. I'm fighting off another UTI as well as a head-cold as I type this. 


Which leads to another decision, that is not popular here but I NEED to do for ME.
I've packed up all my painting supplies until we're through this quagmire.
Nearly everyone has heard of the Spoon Theory by now, if not... 

We have waaaaaaaaay too much going on between the court cases and the million and six medical appointments for my Dad and four boys. 
The house is falling apart... cleaning, cooking, repairs... 
I just don't have the spoons left for Art. 
I have tried... 
I have tried so hard and it has just left me a sad crying puddle at the end of the day when I can't... 
This year's Soul Art Day was the final straw.  Made sure to get extra sleep all week, upped the self-care etc... and was ready for a whole day to actually DO IT... and then the day before we got a call: The younger 2 boys needed a 4-6 hour appointment at CHEO the next day. 
THIS is what life is like now and dropping the medical or the court cases isn't an option. 
We can't make plans, we don't know when we need to leave for something. Greg HAS to work, so I'm trying to juggle the rest. 
I have no spoons. 

I have taken all my paintings down from around the house, they make me sad. 
The Art Finder and Red Bubble Stores will remain open and I can access the Art when/if anything sells, but there will be nothing new til I feel there are spoons to spend. 
This also gives me the chance to re-organize and re-evaluate my space before starting in again.
All my painting supplies, as well as the ART have been moved down to the basement.
It feels much bigger in this house already...
It actually feels GOOD. 
I can breathe again, just a little and after gasping and struggling so much over the past 6 month... I'll take even a small mouthful of any air that offers relief. Happily. 

Said my piece... 
Going to go find a book and some tea and relax before the phone calls start again.
Good-Bye with Love, 

Wednesday, October 14, 2015

TRUE heART Therapy ...and return to the Blog!

So... *sheepishly toeing the ground* been awhile since I managed a Blog Update. 
--- try the beginning of JUNE Sarah!!! *tongue cluck* ---
er... yeah... stuff - excuses - life - excuses- um...
I'm here now! That's all that matters. 

Few changes since June, some good, some not so good, some FOOKIN' FABULOUS!

I'll start with the BEST... 
Days End Studio IS on the Web!!!
My ART was approved, after a -so stressed I didn't sleep, drove my husband and family crazy, ack!- wait on their (slowwwwww) juried approval process. 
NOW many of my ORIGINAL pieces can be found for sale 
...and I'm always making MORE!

I also uploaded many, many more pieces for sale as print-ables:
Clothing, coffee mugs, travel mugs, posters, prints, phone - laptop - tablet covers, pencil cases, backpacks, tote bags, spiral bound - hard cover notebooks, throw pillows, scarves... etc...

The not so good is a medical issue... 
Though I really, really try to keep personal sh-tuff off the blog, this time there is ART attached that needs a little... LUCY, ya got some explaining to do! 

I turned 40 this year and decided to take matters in hand regarding excess weight so I started with a local medical weight loss program. Part of the start was a full.... and I mean FULL work up, poke-prod-test and re-test to make sure there were no additional medical issues that would make it hard or unsafe to proceed. 
They found something. 
My ECG/EKG had a Long QT so I was sent to The Heart Institute for further checking etc...
There is always a SHINY in every situation if you look... The bright spot in this is, temporarily, I was assigned to a very nice cardiologist. Yes, um... nice. If he counts as a celebrity, Liem Neason gets the BOOT off my Free-Three List (keeping Ryan Reynolds and Gerard Butler) easily sliding into slot #1. The most amazing eyes I've ever seen, when he smiles *gasp* and his voice makes me feel all sorts of things. I suspect he's broken as many hearts as he's healed. 
With apologies to Supernatural, we'll call him Dr. Sexy. 
Dr. Sexy put me on the 1st approved meds (there are really only 2 things that will 'work' for this) and things were OK for awhile. Until last week on Friday I fainted, then spent much of the weekend only semi-conscious and generally unable to care for myself. After talking to the pharmacist late Saturday, I stopped the drugs Sunday and Monday and called Dr. WFG (Waiting for Genetics) office on the Monday. His office sent it back to Dr. Sexy's office and after some back and forth Dr. Sexy -called me at home- Monday Night and it was decided I would head to emergency. Youngest son's birthday party was already in progress, so we opted to wait until after guests cleared out to go. Dr. Sexy called in a 'reservation' ahead of us at Emergency so things went smoothly, dare I say fast, that night. The other minor amusement was being able to hand my OHIP card over and say I had a reservation under 'Cooper' and have the intake nurse fully play along, smiles are good, big huge grins are better. 
Nothing much to report that night. We came, they tested we left. 
Next day was a flurry of calls from Dr. WFG and Dr. Sexy's offices. Told to cut the meds to 1/2, but start taking them again immediately and an appointment was booked for Friday with Dr. Sexy. 
So far the 1/2 dose is still making my tired, dizzy etc... but that -should- even out. Dr. Sexy was amazingly patient with the myriad of questions collected between both my Mom and Husband. Poor Guy... 
Now I must wait for genetic testing to find out which type and if I have passed this on to my children. It will be a long wait... there are only 2 doctors in the city that deal with Long QT Syndrome and one is away til January. Sadly it is not Dr. Sexy's specialty. 
(lol, bored yet? This is why I keep the personal sh-tuff off the blog... not so fun) 

Decided the best thing to help -me- deal with the stress-anxiety-unkown around this Heart issue was intuitive/therapy painting... 
A heART Therapy Project.
This is what's happened so far:
Red and Pink (rose scented) candles lit, assortment of green stones on desk. 
Used one of the canvas I load leftover paint on to make texture, Grey... seemed a good start for the grey areas I feel sh-tuck in with this til after the genetic testing. 
Painted it with Blue Moon water (usually do this with my art)
 Then I just started to write, just spew-age without thinking or editing and got it (all?) out. 
Once done writing, washed the entire canvas in paint with a few drop of rose oil in it. 
A bit of my journaling faded away at this stage.
Next I grabbed pink and green paint at random and squirted and sponged it on, for the heart, covering the canvas, with layers and  layers and layers... 
When it was completely dry, I noticed my thoughts were -completely- gone but the LQTS was still visible. 
Then I drew and painted...

It is not done yet. 
I can feel that... but this is the way it will stay while I wait.
Questions waiting for answers... 

This is also me being BRAVE.
I felt raw the whole time working on this and I still feel very tender. 
But my husband pushed for me to share this rather than just hang (read:hide) it on our wall, why I'm back on the blog, and as I shared on the Days End Studio Facebook Page:


yes YOU... 

Do 1 thing each day that makes you FEEL brave...

Today, in a very special group, I shared a piece of highly personal ART that in posting made me feel vulnerable and RAW to the very core... 
Do I care if people like it? 
Do I care if others think it's 'pretty' or 'ugly'? 
Do I care if they understand it's meaning? 
Does it need to be understood?
I was BRAVE today and -that- is all that matters.

Better out than in... and now... onward! 
Thank-YOU for taking the time to read *applauding* if you made it down to here.
~ Sarah ~ 

- Waiting Heart -
12" X 16" 
Acrylic on Canvas

In Progress... 




Done... For now. 

Sub Note: 
The Feather Necklace
A gift from my Mom for an 'anniversary' of sorts... 
I am a survivor of domestic abuse. 
Gifted to remind me that I have survived so much already and that I CAN keep going. 
I wear it every day . 

Monday, June 8, 2015

Week 23: Multi-Journal (June 1st - 7th)

Week 23: Multi-Journal (June 1st - 7th) 

Bits used this week:
-sheet from son's art folder (he trashed)
-scrapbook paper
-meeting reminder sheet from school
-post-it note
-magazine flyer
-Sketchbook Project insert
-printed meme

Monday, June 1, 2015

Week 22: Multi-Journal (May 25th - 31st)

Week 22: Multi-Journal (May 25th - 31st) 

Bits used this week:
-Sketchbook project insert
-hair dye instruction sheet
-scrapbook paper
-paper scraps
-leftover paint smear sheet
-Magazine flyer
-printed meme

Thursday, May 28, 2015

International Soul Art Day 2015 #SoulArtDay

This was my yesterday:

Soul Art Day Schedule

All times listed are Eastern Time


10:30am – 11:30am

12:00pm – 1pm

1pm – 1:30pm
Live Webcam is off during lunch

1:30pm – 4:30pm

5pm – 6pm

6pm – 6:30pm
Live Webcam is off during dinner

6:30pm – 7:30pm


International Soul Art Day wraps up

...and it was AMAZING!!!!

My finished piece is now in the 

Laura Hollick guided us through:
Setting an Intention
Creative Expression 
via. Stream of Consciousness Story Writing
Dealing with Creative Blocks
Spirit Action

We were able to watch Soul Art Day Live through a muted Studio camera and Live Hangouts and there was a steady stream of chatter and photos from Soul Artists from around the world in the Soul Art Facebook group.
Many using the hashtag#SoulArtDay on other social media.

I am so pleased to have been able to clear the day for this yesterday ...and will again in future years. 
Trust me, it IS worth your time. 
Ready at 10 am with the worksheet, waiting for the Live Welcome Message:

5 images selected for my Story
1. Rabbit
3. Food
4. Book
5. Cosmic

60 cm X 80 cm

Begining ART... 
Collage of dictionary pages and story images:


More Painting... 


Monday, May 25, 2015

Week 21: Multi-Journal (May 18th - 24th)

Week 21: Multi-Journal (May 18th - 24th) 

Bits used this week:
-Post-it Notes
-scrapbook paper
-ATC Background

Monday, May 18, 2015

Week 20: Multi-Journal (May 11th - 17th)

Week 20: Multi-Journal (May 11th - 17th) 

Bits used this week:
-printed meme
-ATC background
-Build a Bear Flyer
-3D stickers