Tuesday, May 31, 2011

keeping my cool

HA! I try my best to do this like 99.9% of the time! (btw... about 99% of THAT time I am failing miserably) But I am so frustrated at ... the medical system... the government ... people who just dont get it... my washing machine ... my dishes piling up at the sink ... the weather ... my back ... the weather (I live in Manitoba and of late our weather REALLY sucks so it is deserving to be railed at AT LEAST twice!) ...  i am just in a mood I know and I have to get out of it. Part of it IS due to something we learned on Friday. Sam's ped., DR. Goldberg, called on Friday to get back to us (on a phone call from over a week ago) and was fabulous at setting up a lab appt for him. (Sam has been having tremors - as we call them A LOT. ALmost everyday.) Doc. wants to check his Val-ProicAcid levels to make sure everything is good... not too much or too little. The tremors could just be a 'getting used to the meds' side effect... or not. So Sam was to not take his meds this am and then go to school and straight to the hospital for tests then take his meds when he got back to school.... I forgot to remind him about it. SO at 7am.. "Sam take your pills..." and he did...sigh
Then later at 9.30 I remembered... and so he will have to do it tomorrow...not a big deal except that now the Wpg Doc. wont have the results... when we are there.
While I was on the phone with the Doc. I asked him about a neuropsychologist for Sam.A Neuropsychologist is (according to TBI LAW)Neuropsychologists are not medical doctors, but doctors of psychology whose field of study is concentrated on the brain and its functions. Neuropsychological testing is designed to determine the brain's capacity with respect to short and long term memory, abstract reasoning, attention, concentration, executive functioning, motor skills and other cognitive and psychological factors. By comparing the pattern of these results, against the patients pre-morbid capabilities, and correlating these results with the nature of the trauma suffered by the patient, neuropsychologists can, to a reasonable degree of certainty, opine that individuals without an acute diagnosis of brain injury, have permanent deficits as a result of brain trauma. 
When I went to the BI support group this month I was talking about feeling stressed and wondering why there is no help for us in the way of a proctor or respite...for when we need it... and the question was asked if Sam had seen a Neuropsych. And then the gasp of "why not!?' was amazing!  When I asked Wpg. Doc this he asked the same question... but he also told me that to see the doctor that is in Brandon (which is HALF the drive of a drive to Wpg) will charge at least $1200.00 for the first session! HOLY!  He suggested that when we see him on Wed that we will discuss other options... which will be in Wpg... but we can drive to Wpg a heck of a lot of times for the first $1200... sigh... another one of these things that have blind sided us!  

Saturday, May 28, 2011


The Facebook group that I created Canadians with Traumatic Brain Injuries just made the 100 members milestone!! I put a call out this week to get to this number and this morning when I was on FB I had a pleasant surprise! ONE HUNDRED members!! YAY! I am still encouraging please to join and invite friends since next month is Brain Injury Awareness month and we need to get more awareness and education out there about this! I keep thinking of that old Pert (I think it was Pert) shampoo commercial... She told 3 friends and they told 3 friends and they told 3 friends...  So please look for it on FB, and ask to join. (not too impressed with the new version of groups on FB... I cannot invite ppl to join my group...)

I have been busy this week not only working with Dennis and sorting and doing cattle stuff during the day but I have been trying to get out emails & phone calls to radio stations, tv stations (both local AND the biggies-- CBC and CTV) the newspapers and friends and family about next Junes new 'duty' to educate people about BI's. So far one local newspaper here is going to do 'something' for BI Awareness in June, the local access12 have invited me to do a coffee chat with Jim Cockburn about our family's story and mine as a caregiver (that is May 31) and that 1hour episode will run 3times in June. I am speaking on June 3 to some nursing students at Assiniboine Community College about our story (I have yet tho to find someone to be my run thru sounding board on my presentation and I am less than a week away!!!! eeeek!). On Wed. next week we are in Winnipeg for an appointment for Sam we will be stopping in Manitoba Brain Injury Association (MBIA) to show my idea for BI awareness 'pins'. ON their website there is an oak sapling and I am making small oak leaves to wear.  (I had this idea last year and when the new daffodils for cancer came out this spring -- I thot-- WOW I was on to something!!  I found a great paper punch that not only cuts out the leaf but embosses the veins of the leaf too! Dennis and I are willing to make them and put out the initial cost of them so that they can get circulating -- even if it is just in Neepawa and area. (hey I gotta start somewhere!) I want to see if MBIA will want me to put out a jar for donations to go to them or just give them away.
I had a bit of an epiphany this morning as I made some... I had a few different shades of green and my thot was... put out the different shades for a couple of reasons:
1. it will be easier to buy packs of paper in different shades (and more cost effective then buying individual pieces)
2. every BI is different... they are all BI's but all have a different story to tell! Soooo if there are 3-4 different colours it is in step with the survivors and caregivers!

Of course my hubby had to be the first to wear a leaf and is wearing it proudly...

I told him he grabbed one that I was going to throw out because I had 'knicked' the one part of the leaf... his response was "its ok, my brain is broken and so is the leaf". Yesterday A few friends that own businesses in town said they would most definitely put a box of leaves in their business to help... they offered I never asked!! I was shocked and felt very grateful for them! I will keep y'all posted on what happens with the MBIA!  Please pray that they are as excited and open  to my idea!

Monday, May 23, 2011


Lately as I listen to my iPod, I have had a lot of songs really speak to me...
Quite a few of them are Rascal Flatt's songs... Something about this group and their songs really hit home and I am not ashamed to admit that some days they have tears rolling down my face no matter where I am.
This song is so much of what I feel like we are going thru here in our home these days. Not just on the TBI front but on a lot of personal family issues too.
I truly feel like it is Dennis and I against the rest of the world with all that happens in our house, because our family/friends either dont want to see what we are going thru because it is so hard to deal with or they just dont care. Either way, Dennis and I will continue to 'Stand'  thru it all and where ever it is that God is taking us on this journey we will do it together... regardless of who is with us.

I have been trying hard the last few  months to get the word about BI's out there and I sometimes hit BIG.
But I start again and do what I can. I hope I can get people more motivated to learn more about brain injuries and the amazing stories that lots of survivors HAVE BEEN and ARE GOING thru! They are truly heroes in my eyes. The blogs,books and stories I read of survivors and caregivers makes me cry when I hear how they struggle with public perceptions and lack of help -- especially for survivors like Samuel and Dennis who 'look fine'. I know how they feel and what they are going through.
I do find tho that for me there is a difference that is unique -- where they have one person to look out for... and I have 3. I know I dont physically look after dad -- but I am the first 'go to' person for the care home to call. I am there visiting almost every Thursday and try to make the visit as cheery as possible and deal with whatever is necessary.
I also am aware that I dont have to 'look after' Dennis but we do have some issues that I struggle with and have trouble talking with him about because I am unsure of how to deal with it.
WIth Sam I am the first 'go to' person also and I have some problems with some of the stuff and cant go to Dennis because it is too much like his own issues and I cant always deal with 2 of them at the same time...
So I listen to my music...
and write on here and the odd time I post it...
Other times I just put on my big gurl panties and get thru it...

By Rascal Flatts

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright, you'll be alright

Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause its all you can take
On your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off
Then you Stand, Then you stand
Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before its gone
Start holding on, keep holding on

Cause when push comes to shove
You taste what you're made of
You might bend till you break
Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you stand

Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place