there ain't no easy button...

I wish everyone knew more about Brain Injuries...

I wish people would take time to learn about not just Brain Injuries but the person behind the injury was well...

I wish people wouldn't be so quick to find the easy button to "fix" Brain Injuries...

I wish that there WAS an "easy button" ...

..... oh how i wish there was an easy button....

As i write this we have had a crazy month or so (who am I kidding... its been a crazy 7+years!) with Sam. He moved out and got a 'real job' -- he is no longer on the farm and he rented a room on the second floor of a house about 40minutes away. 

He loves his new job. He is working with construction, building buildings, pouring concrete, crawling through crawl spaces to put in stuff... I can't pretend to understand or even KNOW all that they do on the sites so I will just say he helps with building buildings.

We have had appointments with the neurologist, with his regular doc, with a surgeon AND with an epileptologist! 

When we went for Sam's EEG the regular test was found to be normal but the stress test EEG showed as much seizure activity as when he was seizing, so the neuro sent us to an epileptologist. Now this doc seemed good in that he asked Sam what he wanted to do about this all. And Sam's response was to not be tuned into a zombie like before. The doctor then explained that for us its is not a matter of IF he seizes again, its a matter of WHEN. So as long as the EKG that Sam had done that same day shows up good, he will start taking an infant dose of a new med. HE is starting at the smallest dosage to make sure there will NOT be any side effect issues. According to the doctor the worst side effect is dizziness and it isn't an all day thing, just when he first takes it. SO if all goes well, he will slowly transition into an adult dose after a few months. (infant, toddler, child, teen, adult....) BUT there is one thing that is hard to swallow is that this is a very expensive medication so we are praying that the government will take the brunt of it. (lucky for me the doctors office will be the ones fighting for this NOT ME!) 

Sam also had an appointment with our family doctor and we found out he has a lipoma on his back {medical info on that HERE). And she sent him to the surgeon abut having it removed - that doctor said it was an urgent procedure and it was going to be removed fairly soon, it was most likely nothing BUT there is a chance it could be cancerous... BUT a small chance! (whew) We are still waiting to hear from them about when he is having it removed ... almost 6 weeks later. THEN he had his blood work done for the procedure and then he got a call back from the doctors office for him to come in because they found something in his blood work! So of course our thoughts go to cancer? diabetes? Why else would they call!?!?! It turns out his cholesterol was low.... nothing to stress about but it sure would have been nice to know this when they called that it was nothing major/serious.... 

The reason I am filling y'all in on this, is that this is all STRESS on Sam's mind and after 2 medical appointments in one week (Monday and Thursday) Sam woke up on Friday throwing up and dizzy and not feeling so hot. He attempted to go to work and couldn't. He went home and slept almost of the day. He said he checked his pillow  and there was no signs of a seizure... but I am wondering if he has been having them. I am going to keep track of his 'sick days' and see if there is a pattern -- as long as he tells us about them that is. 

I really wish there was a way to explain this stress to family, friends, his employers (but not to get him special treatment) just so they could understand that he LOVES his job but when stresses that are in most peoples lives are easily dismissed or do not create an issue.... can create a HUGE issue in the brain of a BI Survivor. Right now Sam is stressing about medical stuff -if he starts these meds will he be out of it again? will he have to go to more appts? will he have to move home again?, which stresses him about work-- will they understand? will he lose his job? This creates another stress in  his brain that he CANNOT control and comes out in the form of seizures.... so its a catch .22 How can we explain that his brain WILL shut him down even if he doesn't want too! His brain will cause him to sleep, be disoriented (not think straight), forget simple things, to stutter or lose track of words? 

Why is it people will take a broken arm, a stroke, cancer and even epilepsy and look it up to see what all is involved but not for a Brain Injury to help the person!? What are people so afraid of!? Just because someone looks fine on the surface doesn't mean that there is a bigger picture under that surface! 

But how long can someone keep a job when they have medical appointments, stress that causes other issues, possible seizures.... 

We are hoping and praying for an appointment with the neuro psych to help him to deal with stress, but that appointment will be another long wait I am sure... 

so in the mean time ... 

we do what we do best... 

we wait...

OH how I wish there were an easy button...

Old friends are new again!

"Rabbit and The Canadian Wheeler" - together again  :)

My daddy had some visitors a while ago! His "old buddy" Rabbit! (Rabbit was his CB handle and daddy was 'The Canadian Wheeler').
Rabbit is the first vistor friend from daddy's past to come see him in YEARS! Daddy had such a huge smile on his face when he saw Rabbit come through the door! They laughed and Rabbit shared some funny stories with Dennis and I, and oh my did daddy laugh! He had tears running down his face! He remembered immediately who Rabbit was and knew his name! It was so beautiful to see daddy light up again! Thank you Rabbit and Tilly for the visit! I know daddy loved it and so did I! It was so fun to hear the goofy stories of you and Daddy when you were trucking! I rarely hear great stories of daddy unless I am telling them! This visit made my heart smile and it brought tears to my eyes! Thank you so much!

...and...THUD ... there it is....

the other shoe that just had to fall... how many have there been anyway!?
... And how many more are there left to fall?!?

I have had to take a few days to process our news, so please bear with me as I will try to not verbally vomit here.

We took Sam to the neurologist last week and got results of his EEG and stress EEG. Dr. T was happy with the original EEG and wasn't concerned too much and ordered the stress ones just to be on the 'safe side' and those results show that Sam is still having lots of seizure activity when sleeping. It actually is e same results as when he was having full on seizure activity! 

This news was no well received by us -- especially Sam. Dr.T said right away that we need to get this under control and start seizure medication. Sam immediately said "no" and Dennis had to explain our aversion to the drugs. Thankfully, Dr.T said he totally understood once he knew the whole picture, so he is referring us to a new epileptologist in Winnipeg, who is apparently amazing and will listen to our story and what the background is.... Dr.T assured us we would like this one. He is young, and just returned from Harvard where he studied epilepsy. {side note here is while we really, really do want to trust Dr.T's affirmation of this new doc, our past experiences with doctors and Sam's care has not been the greatest track record- most tend to ignore us and our concerns and do what they want whether it is for Sam's best quality of life or not- but we will hold judgement until we meet the man.}

I also got a talking to from Dr.T telling me that I have to be strong (when he saw my tears) because Sam will need me to be... No kidding... My tears were not just for the news we got but also from frustration of having to go through this again (doctors and medications) but also for Sam - who is working to build a life, for Hannah who will be left at home to deal with this with us (in the past I had worked hard to make sure no of the other kids were lost in the shuffle of Sam's appt's and his moods - whether I was successful at it I don't know- but they always had each other... Now with only Hannah at home...who will she have if I am dropping the ball!?).

{I have always been very honest here and I will continue to be.} I had a kick in the stomach reaction when Dr.T told us about the EEG. My first thot was "I failed Sam. I missed all these signs and didn't connect the dots. I should have been better." lots of thots about what I then saw and never realized. I felt guilt about these things and then i felt guilt about me... who I am, or more accurately who I am not anymore. I have still not found me since this journey all began. I can't seem to find the time to do things I love - photography, reading, crafts. I had hoped that now I would start to find the time - with hoped of guilt from spending time on me when I should have been looking after Sam, Josh, Isaac or Hannah, or helping on the farm or doing housework, or doing a hundred other things. I felt guilt about me...
I also have the 2015 bracelets sitting here and so far I haven't had the time to address envelopes and get them out to people, between 3 birthdays, a graduation and company all in June! So a tad bit of guilt there...
We have also been dealing with the regular day to day {said with a bit of sarcasm and a bit of animosity thrown in} Brain Injury stuff.  Denial and all that comes with it, sleep deprivation and stress, anger, frustration and emotional melt downs -- I have been wanting to sit down and write more about all these things as they were occurring but then that damn guilt... and throw in lack of time... and you get this kind of a post. {in my head this is all so eloquently written and that provoking... but in reality it is emotional drivel ... i know}
Anyhow, all through this new {ok not so new - just the second act?} information all I have wanted to do is cry and scream... and lay in bed all day and ignore what I think is coming rushing at us down this road... But people don't seem to want to let me - as if my crying is a sign of weakness or that I have no faith -- again blather.. i apologize

 I found this on the internet somewhere:

I know it is all in God's hands. He knows the outcome and all that will happen in time. I just have to trust in Him ... and the doctors. 

But I can still cry right!? 

stuck in this cycle

Some days I can write an entire post in my head of life these days and then when I finally sit down to get it done, there is nothing there. All the frustration and issues we are dealing with can't seem to form into words... I feel crazy at those times... this IS one of the times.

From our BI Meeting ...

At the beginning of the week we went to our monthly Brain Injury meeting. It starts as an everyone in meeting, where we introduce ourselves, talk about up coming projects or issues then we break and go to our "specific" meeting for the final hour. Going to these meetings are as much for Dennis and I, as caregivers, as it is for Dennis and Sam as survivors.... Yes you read that right. Dennis will go to either session depending on how he is feeling, or where his biggest need to be is.

This month, we had a speaker come and talk to the group about spiritually. Not religion, but spiritually, and how this relates to us all when confronted with issues, people, events, etc. Joe {the speaker} described it kind of like the 12 step program. He jotted on a board {see picture}the different stages we go through and described what may go through our minds... It was a big eye opener for me to see how the past 20 years with my dad and 7 years with Sam have affected me and how I am dealing {and redealing} with things.  I will be doing some serious soul searching in the next while about these issues to see if I can get past them ...

Which brings me to the second part of our meeting where the caregivers get together. I struggle with this part of the meeting because A) my dad is so severely injured and never makes progress and its hard for me to identify or ask for help on how to deal with things B) with Sam, he is the youngest person In the group (there is another person of his age but they don't come to the meetings, but their parents do) so I struggle again with not being able to identify C) most in the group have some form of 'help' via doctors, MPI, social workers, mental helath workers ....
We never received any help even after we left the hospital. More of a 'don't let the door hit you on the way out'. I did all Sam PT and OT on my own at home. We never have had a neurologist or ANY mental health help, except for when we went for family counselling 2 years ago because of issues with Isaac. 

Listening to other caregivers and the help their survivors get or have gotten in the past was like a slap in the face on Monday. All I could think was "I should have done more to help Sam get the help he needed" and "what did I miss that would have helped him then and would benefit him now". Now he could use the extra help or maybe at that time they could have helped him to get through issues that he is going through now -- basically Sam is about 2 years socially behind. He behaves more like a16-17yr old than a 19 year old. He lives on his own, works with us in the morning, but his afternoons are spent hanging back at the school, he can't seem to have an opinion on anything that relates to his future, he stresses out easily, his sleep is not good... I could go on and on.  He is still in denial about his injury it seems {sadly unless he is joking about it or using it to impress someone}.

I found the above post that I wrote a few months back and never posted it for some reason... so I will continue it from here: 

Things have not really changed since my previous writing except that Sam has made a few changes to his daily routines and they are for the best, but there is still work to be done. He doesnt spend time at the school anymore, he has his pigs and chickens now so there is something to keep him excited about gettin up each day. There is no chnage tho in his denial. He snaps at us for trying to help and that stresses me. But then lots stresses me i guess.

do i stay or do i go?

2013 Brain Injury Awareness Campaign Bracelets

I have been working on getting bracelets for this years campaign {a little later than i usually start and June is right around the corner} and today I was talking about 2 different companies to deal with and Dennis made a comment that really struck home for me. He asked if that locally am I really doing any awareness? is it all online? most of last years bracelets (2500 of them) went to other places than Canada. The local Brain Injury Assoc. and groups dont seem to really help with spreading awareness. One association actually told me they would help and we would charge for the bracaelets. That is not my intent with getting awareness out there. I feel we need to spread the knowledge then we can try to raise funds.
The last few years I have purchased and personally mailed out my bracelets. I have made wonderful friends and connections to people but most of them are 100's or 1000's of miles away. I  do not charged for the bracelets and I also mail them out on my own dime. I DO think we need to educate the public to get them to understand about  Brain Injuries! So along with my bracelets i send out a letter with a bit of our story and some actual, AMAZING BI FACTS and I challenge people to educate themselves about BI's.

But this year I ask myself  "do i continue with bracelets or do I just forget it and let it go"?  I know lots of people think I do this just because of Sam and because he is not 'the norm' {whatever that is in the brain injury world} why bother anymore? Those people are partly right in that I started this awareness campaign becaus of Sammi. I started it because i felt i needed to help people to understand BI's. I needed to be able to talk to people who possibly knew what i was going through or understood my frustrations of people being un-educated about BI's .... but the last few years it has been more because of my dad. He is what most people assosicate BI's with... someone who 'looks' like he 'should have a brain injury'. He is a quadriplegic, he doesnt speak much and when he does it is muffled, broken, inappropriate {and usually heartbreaking for me}, he can not feed himself, he is incontinent and he has the mentality of a 7yr old or less. I do the bracelets for my daddy. I want people to know the reality of BI's, the reality of the silent crippler and the reallity of how it affects the lives of not only the survivor but the family and caregivers too. i want people to know about ambiguous loss and how it feels to sit and watch your loved one slip away from you bit by bit, day by day. to know how it feels to have to sign a DNR every year at the personal care home yearly care meeting.

That it is hard to watch is a given,
that is is hard to live this life is a given
that we should have to do it alone is not.
That we should travel this journey with out understanding from the world is not.
I want to help people to navigate this life with someone in their corner whom they can talk to and know that they will not judge or ridicule.
I want to educate the public to not judge or brush off BI's as a non-issue.
I want people to not be afraid to ask about BI's and to arm them selves with information about them so they are knowledgable about the basics  if it should ever happen to them or someone they love!

So i think i just answered my own question about whether or not i should continue with the bracelets...

i guess the bigger question is what do i do to get it to be more local (town, province, country) to get more awareness out there?!

Any ideas?

{i am getting a headache already! :-D }

I can't make this stuff up!

waiting to see doctor in hospital 

I am not kidding, I can't make this stuff up! Our life gets crazier and crazier...
Last Tuesday I worked at a local Colony in the morning and came home at lunch time and went for a walk around 2 pm. I just began interval training for running, I decided to run the interval timer the entire 21 minutes and then walk the road back.
I got almost a mile and a half from the house, when my phone rang and it was Denis telling me that he needed my help, he was "caught in the post pounder" and he had "already called 911".

I tell you about the running part because I had ran most of the 1.5 mile and now I was that far from home and had to run back...
I started running back to the yard to help -- unsure of what I was going to find when I got to Dennis -- and as I ran I called our neighbour to see if they were home and could come and get me so I could get to Dennis faster and so I had help with whatever I was about to encounter.
Luckily,  they were home and were able to come to get me immediately. Corey started the tractor so we could start the post pound and release his hand which is what was caught.

Sam showed up then and we got Dennis into the car and met the ambulance on the highway so they could take him to Neepawa (which is where they wanted to take him, possibly assuming that his hand was severely damaged and would require further attention in Brandon or Winnipeg).

{Dennis had been making new rubber pads for the post pounder and had thought to put a brace in so that it couldnt slam down and hurt him, but somewhere in-between thinking it and walking back into the shop, the thought left him and he made one rubber pad and then tried to fit it on and he must have leaned on the pounder lever and caused it to slam down onto his hand...}

Once we got to the hospital and xrays were taken it was discovered that there were no broken bones!! Hallelujah!! God is good! The doctor thought that it is a good possiblity that Dennis' wedding ring saved his finger from more severe damage! But there is concern that the knuckle of the finger may become a "boutonnière nuckle" -- so he has to keep it straight for 2-3 weeks.  If it bends at all in between that time, he has to start over from the start.

Concerns about Boutonniere Knuckle

The wedding ring that possibly saved his fingers! 

He has 3-4 stitches in the base of the finger, which we have had looked at by our doctor and it turns out the finger was wet, too wet in fact. SO wet that the stitches were not even really doing anything. We had it redressed and on Saturday we went in to have it reassessed at the local hospital and the nurse or aid that dealt with Dennis didnt listen to us (we repeated ourselves a few times about the injury and what we were supposed to have done) and they still did stuff we discovered this morning when we changed the dressing  that the stitches and the finger were wet again...
Dennis is also concerned that there is no real feeling in the ring finger or the middle finger. So we are hoping to see our doctor this week to address this issue and have stitches removed if possible.
Here is Dennis almost a week after the accident...

I am worried about this all as we are now into our busy season (calving starts in a month) and Sam is also going for a stress EEG tomorrow. Josh has been sick with something in his chest, Hannah has been sick with a cold and has started Driver's Ed, Isaac's grad and the school play he has a lead in is coming up -- all 'minor' things I know, but they all add up. I am getting so tired and frustrated at myself with things. I have been trying to lose weight and get healthier and my stress levels go up, so that isn't helping the weight stuff... which doesnt help the stress levels... all catch .22  ... and I have also been feeling sick and just  'not well'... I am just so tired

I know this sounds incredibly selfish (espeically after a 3 week dream vacation in New Zealand recently), but when do I get to be sick, when do I get to stop running around being over tired? when will someone look after me...

like I said, selfish I know...

rant over...

2431 days...

**sigh**

2431 days...

that is approximately 6.5 years...

that is a loooong time...

2431 days between Sam's accident and when we actually were seen by a neurologist.

Not a neuro-surgeon.

Not a pediatrician that was head of the Brain Injury division in the hospital.

Not an epileptologist.

Not the family doctors.

An honest to goodness neurologist.

Last summer, Sam was having some issues with major headaches and loss of peripheral vision in his left eye. He had had a few of these instances over a few months before he finally told us and we were able to take him to see someone about it.
That day in October, started out with a trip to the walk in clinic (to the north of us 30-45mintes), followed by a referral to the optometrist (to the south of us 1.5hours from home in Brandon), which lead us to the hospital ER (referral from optometrist). The ER doctor then sent along a referral to the neurologist, which we finally got to see in March!

I am not complaining.... well not much.... ok I am trying hard to not complain.
I am just tired and frustrated with our medical system.  The last few years (especially since the seizures started) Sam has had many different manifestations to stress. Beginning with the seizures, he makes a strange clicking/clucking noise when he gets stress, headaches and then the partial blindness and headaches. I worked hard to find someone to help Sam in dealing with the stress ever since his accident and yet all professionals kept telling me that "he was fine". Sam has never really dealt with the reality of his BI. He will tell people about it, but it is mostly just to see their reaction or to shock them.
In reality, Sam will not readily admit to an injury other than the pure physicality of it. He will admit he has 3 fragments still in his brain, but he is not admit that he has issues to deal with, so forget about looking for help to deal with the issues. NO matter what we tell him or how we tell him that everyone has something to deal with just that he has a much cooler story to tell!

So now we are finally seeing a neurologist, after 2431 days, and he is 19years old (but acts more like  17yr) and we cant work as hard to get him the help he could use, because he is 'technically' an adult. We are always working to help him keep moving forward in life. To try to gain those 2 years he lost socially. W try to help him to set up his finances, appointments and schedules so that they work for him. One thing that helps is that he works with us and since he has been here he hasn't had any headaches or peripheral blindness.... that that doesn't mean he hasn't had other issues.... because he wont tell us about them until he has had them for a while.

This neurologist has us going for CT's and EEG's again here soon and Sam is not impressed with this. The Dr. wants to be sure that all seizure activity is gone and he wants fresh scans of his brain. I am happy about these as the EEG will help to settle my mind on the seizure issue (as I said before Sam wont tell us if there is anything occurring until it gets to be too much for him).

just another example of how TBI's are  life long...

no matter how far you have come...

no matter whether you think you are done with it all...

it will still jump out and bite your ass ... just to remind you it is there...