A few months back, Sammi had some minor surgery, which was the removal of some lipomas (fatty tissue deposits and they have come back. Yesterday he went to the doctor who removed them and he was informed that he has something called Dercum's Diseaseand that he will continue to have these lipomas pop up from now until he is 35. If they cause him discomfort or pain he will have to go back to the doctor and have them removed....
which is done surgically and in a hospital...
minor... yes...
but still a surgery ... every time to remove them.
The few he has had, have caused discomfort (which may be a good thing since that may mean that he caught them before they have gotten too bad and caused any pain).
I am so frustrated at this new development as it is once again NOT a well known (it is rare in fact) 'disease' and the info we found on it seems even rarer as it is typically WOMEN aged 45-60 who get these and not 20 year old young men (although it can affect anyone of any age)! I have posed a question to Dennis (not that either of us have any real medical knowledge) that if his BI could have anything to do with this new issue? He doesn't fit into any of the categories of symptoms other than he has lots of Lipomas ( at last count -- about a month ago -- he had about 13-15 'decent sized' ones)
So maybe when the bullet ripped through his brain, it caused a rewiring that is causing his body to not breakdown the fatty tissues in his body... but since there is no real information on why this is all pure speculation....
and frustration....
Each surgery will mean a week or more of work (depending on where the lipoma is located) and that means no income. We have applied for the disability credit for Sam but have been denied both times. This credit is not an income for Sam but just the ability to earn a bit of extra money before he would have to pay taxes. And he is on his own, working and living... which means he has bills to pay! So a few days off even will effect his paycheque and bill paying abilities!
We have now waited for almost 3 months for an appt for this round of lipoma removals, and he has more than when he initially went in for... sigh... and I can't do anything because he is 21. He forgets to call, or maybe doesn't want to call, to gets too busy to call to check on why he doesn't have an appointment.
I try not to worry. I keep handing it to God, but I keep taking it back...
emotional rollercoaster rides... free of charge!
Just trying to get off before it flings me off...
the last few months have been hard to say the least.
We don't see Isaac too much as he is very busy with school. Sam is busy with his job (and until April he lives in Neepawa). Hannah is now getting ready to graduate in June, work at camps this summer and then in September she is off to Mazatlan, Mexico with YWAM (Youth With A Mission) for 3 months, ending with 2 months in either, Mexico, Asia, South Africa or Europe.
Someone had asked me this past week about Sam's accident and I started shaking, my chest got tight, I choked back tears and I had a rushing in my ears.... it was weird because that hadn't happened to me since right after his accident! And now we are almost 9 years in....
We started a new church this fall and I have had some serious anxiety issues going each week. So much so that my chest gets tight and the tears start. I think part of it missing our old church family and going through so much and not knowing anyone really made it all that much more emotional. I love the new church and what is it doing for Christ and the community, but I hadn't been able to really talk with anyone, until this last Sunday. It feels like I am 10 and starting a new school and having to make new friends all over again. I am the new kid on the block and everyone else is sorted for friends and who wants to be in charge of the new kid!? I am tired of always being 'new' to people.... and let's face it, my life isn't that interesting to make people want to talk with me! {I attended 17 DIFFERENT schools in. my day - some I left and went back too at a different grade even! so trust me when I say I KNOW the new kid in class feelings!}
When comparing churches (whixh i know i shouldnt do), I find the men in this church to be so much more emotion filled with they lead praise and worship and that sometimes hits me hard -- this Sunday was no different. I had to leave the sanctuary because I couldn't regain myself.
I headed to the nursery and sat there crying feeling so incredibly stupid. when I heard someone walk in. I thought it was Dennis or Hannah but it was a wonderful lady from church that I had spoken with a few times and enjoyed her company. she asked if I was ok and told me how she had seen I had struggled a few times during the services. I told her about my anxiety and bi-polar issues and how I have had a time lately dealing with things and church was one of them. as I spoke to her a few things started to come to light for me and how i think it really is a grieving process I am going through missing our old church and church family. Not that we can't see them or spend time with them, but they are all making this new transition into a new church family too and I don't want to keep pulling people backwards..... even though I feel like I am going backwards all the time.
I have been working on my emotions (insert anxiety and bi-polar) with prayer, breathing exercises and as soon as my essential oils come in I will add them to my repertoire. I don't want to go to the doctor as they always seem to make me feel as though I am crazy (which, lets face it, is a very good possibility) and they want to put me on drugs. I don't want the drugs. Years ago I was started on a drug that put me into ICU for a couple of days and I don't want to do that again! I don't like the way they make me feel, I don't like the trial and error factor, I don't like that it costs a small fortune and that adds more to my anxiety and depression.
I may see if I can still go and talk to a counsellor at the health unit. But that requires me to go out in public and I just don't want to "people". Because then I have to talk and act normal (whatever that is), I have to put on that facade that makes people happy because face it.... who wants to talk to Debby Downer.... cuz "we all have problems right" (sarcasm at its best right there folks!)
I miss writing on here - I found it incredibly therapeutic but my MacBook Pro is on its last legs and we can't afford a new one and writing on the farm computer isn't the same as I feel that everyone walking by can see what I am writing or worse yet look into my writings ... which is silly since I post it for the world to see. But when I type I get into a zone, my own little world and type out all sorts of blathering stuff and until I hit publish it is safe with me.
sigh.... I will work things out. I will not go crazy totally...
yet...
not this week....
I will not drown in my own tears. (although I might meet Alice though and share a cookie)
My memories of the past will not haunt me forever (maybe they'll exorcised leave next week).
My head will not burst under the pain and strain of these darn headaches -- even though it sure feels like it some days!
I promise to not use so many sarcastic, smart assed references next time.... maybe... maybe not
maybe I should write a book.... "How not to go crazy! Even when you already are..."
On December 31, 2016, before midnight, my uncle Norman had a dance with his beautiful wife(my daddy's youngest sister), Lois, at their local legion, after they decided to call it an early night and head home. A short while later in the parking lot of the legion, Uncle Norman, started their car, pulled out of their parking space. He then proceeded to re-park the car, turn off the ignition and have a massive heart attack and pass away.
To say the least his entire family (my aunt Lois, their 4 kids and all their grandkids) and the rest of the family were devastated. Dennis and I headed to Alberta to be with my aunt and cousins during this time. My uncle was awesome! He taught... OK he TRIED to teach me... how to peel potatoes KP style (he was in the British Army back in the day) when he was home in Ireland. He taught me how to make amazing Chicken Fettuccine Alfredo, he taught me other kitchen tricks. He had a laugh that was infectious.
I personally felt very guilty about going to his funeral, as I had hoped to go last fall to see them but we went to see my mom instead, so the plan was to go out this spring. I didn't want my last visit with my favourite uncle to be at his funeral, but God had other plans. I am so happy though to know I will see him again and then it will be for eternity!
While at the celebration of his life, my aunt asked me to have a drink with her and N, (N was my daddy's second wife and she and her boyfriend played parts in where my daddy is now in life) and to put the past behind us. It was a very hard decision for me to make... so incredibly hard that I almost didn't want to go to Alberta, because I knew she would be there. But I went, I went and I spoke to her. I told her that I had forgiven her long ago, but that it didn't do a thing for my heart to know that my kids would never know just how awesome of a man my daddy was. I told her how whatever her part, and her boyfriends part... and my dad's part, was in it all I can not convey to my kids how much he would have loved them, how proud he would be of them all and how much he would have been THE BEST PAPA EVER to them! I told her how each of our kids remind me of my daddy and how that breaks my heart (and makes it soar) every time I see it in them. I told her how our Sammi looks SO much and acts SO MUCH like my dad it is scary! I told her that I forgave her because I did it for ME.... not for her, not for daddy, not for anyone but ME. I had to because it was killing me. I told her how I had told dad that if he truly felt he belonged with her that I would support him and love him no matter what. She told me how she thinks of him everyday and she loves him (even though she is now married again) but I told her that I not only think of my dad everyday, I MISS him everyday because my daddy is gone. He effectively died that day and all that is left now is a shell.
I don't ever expect to see her again (but I may if I go to visit my aunt), but I am glad to got to say my peace with her. I am glad she knows that I forgive her but that the choices that were made that day affected not only her, her boyfriend and my dad but they affected me, Dennis, our kids and the future generations of my family that will never know him. Never hear HIS laugh, hear him tell a joke (but insist you clean it up before you pass it on lol), here him tell them how much he loves them and how proud he is of them. I often say to Dennis "I wonder if dad would have....
- had a cell phone and learned to text to communicate with the kids
- had a FB profile
- rode with Josh in his Mack hay hauler
- sat and enjoyed a beer with Sammi on a Saturday afternoon
- talked religion vs. faith with Isaac
- bought our Hannah a bouquet of flowers and had them delivered to the school for her birthday
- would have been proud of me and how I have raised my family
all these things I wonder but I will never know because he was taken from me, from us. But I am so glad I got to tell her. I still want to hate her but I can't. I can't because they not only took my dad from me, they took my awesome kids from their lives too...and sometimes I think that is punishment enough.
With this being said, I still cry about talking to her. My anxiety was so bad that day that it was crushing me. There is more I could have said, maybe should have said, but I hugged her and that was it. I left the area where we were talking and headed to the bar of the legion where the celebration of life was and enjoyed the rest of the evening reminiscing with my cousins and sharing their grief. I buried mine that night.... again and maybe one day I can have someone to share my grief with.....
this past week was a doozy again! I seriously thought we were done with BI issues and all that goes with it... but again I was wrong.
at least I think I am wrong... but then again ...
- we were blindsided last weekend by our farm shop door (one of the big ones that you drive a tractor through) wide open Saturday morning before we head out to volleyball tournament -- dirt bike hauled to door and tools out...
This was followed by a missing quad (the only quad we had running for Dennis to do chores with) when we returned home from a volleyball tournament
-not so pleasantly surprised to find it 'borrowed'
-and even less surprised to find it returned broke down ...
We knew once we saw it was missing who had it and we were seriously not surprised to have it returned in less than running condition. Sometimes things like checking the oil and other daily maintenance things go forgotten about. There was also a severely sprained ankle from a few days earlier, an epileptologist appointment that was to be in the coming week (that was missed)
Dennis had spoken to Sam early on Saturday (about the shop door incident) and there was no request to borrow the quad (which would have been no as it had been asked the day before -- this is because we are down to one quad for Dennis to use to move cattle and fences daily).
To say the least we were a bit upset and rightly so we figure.
Apparently we were wrong...
Sam is not talking to us
He has 'unfriended' his siblings on FB (Dennis and I are no longer on FB)
He removed himself from our family group chats on messenger
He plans on moving out
and he is done with us (his words to me on Sunday last week) and "all the BS around here"
His attitude and demeanour is very much like when he was on his seizure medications. (Which he is not now); like he is bound and determined to make life miserable for everyone because he is miserable, upset, fed up, disappointed or whatever...
He will not say what brought this on.
I am at a loss... my heart hurts
I am on the verge of tears all the time. I spent copious amounts of time praying to God and talking with Him, handing all my worries and fears back to Him when I try to take them back. I know worrying does nothing so that is my daily... hourly ... even every minute goal...
I send Sam texts asking him to come for tea or just to say hi basically and most are met with nothing or no and what makes it hurt so much more was it wasn't that long ago he sent me a beautiful message that brought me to tears:
and now this ....
I am just so tired....
I know part of this is his BI and all the lies he has been telling himself and others are now the resounding truth in his head
but I am tired....
I am tired of always being the 'wrong' one, the one to blame, the one who is the emotional punching bag for people...
and I am mad an hurt....
why is it that he can't see that we are the only ones that are ALWAYS here for him and love him unconditionally ... and yet it is ok to treat us like crap and hold his friends up to be the ones where are 'always' there?!?
why does he feel the need to shut out his siblings who only want whats best for him!?! they didn't do anything -- but because he feels the need to post his life on FB he feels that they will report back to us what he is doing!
I am exhausted
I sleep little
I hear every noise in the house at night again
I am trying to keep busy with whatever I can to keep my mind from wandering to why!?
WHY!?
why the heck do I let him do this to me...
because I love him and want to see him succeed in life.
He is my 'Sammi' and I miss him terribly....
You can look at the menu, but you just can't eat
You can feel the cushion, but you can't have a seat
You can dip your foot in the pool, but you can't have a swim
You can feel the punishment, but you can't commit the sin
And you want her, and she wants you
We want everyone
And you want her and she wants you
No one, no one, no one ever is to blame
You can build a mansion, but you just can't live in it
You're the fastest runner but you're not allowed to win
Some break the rules, and let you cut the cost
The insecurity is the thing that won't get lost
And you want her, and she wants you
We want everyone
And you want her and she wants you
No one, no one, no one ever is to blame
You can see the summit but you can't reach it
It's the last piece of the puzzle but you just can't make it fit
Doctor says you're cured but you still feel the pain
Aspirations in the clouds but your hopes go down the drain
And you want her, and she wants you
We want everyone
And you want her and she wants you
No one, no one, no one ever is to blame
DO you remember the hit song by Genesis in the 80's "Land of Confusion"?
Maybe I am just a weird 80's chick that remembers far to many things from that time ... and I should just forget them!
I ask because that is how I feel these days. I haven't updated on my health issue from January, because I am so freakin confused right now about it all.
I went to a neurosurgeon in February as planned and he said "I don't know what else I can tell you, except that you probably DON'T have a brain aneurysm BUT I should see you again in about 2 years for an MRI. IF you do happen to have an aneurysm, I feel it is so small that there is no chance of it bursting. So go live your life."
Ok I get the go live your life. I would totally get the we will check again in 2 years, if he had actually checked on his time and not just rely on the original CT scans (which he claimed was probably not done right to begin with...ummmm ok?) But to DO NOTHING to even try to help elevate my stress or my emotions, like maybe schedule the MRI or at the very least another CT scan!
But what really got me was my husbands acceptance of this (essentially a stranger) doctor, to look at my CTs he felt were either wrong or not read right, and to take all that he said as 'good to go'. That was a slap in the face. I just can't get past that for almost a year I had CLEAR CT's and then all of a sudden there is something there, but not worth to double check or even worry about it. I know there is nothing that they can really do about it but to be just written off....leave you feeling kind of lost and worthless. THEN I go to MY doctor about a separate issue and she (who knows that this neurosurgeon said and basically said to me "well, he is the specialist") keeps talking to me about 'my aneurysm is so small so not to worry about it.' So my question is: DO I or DON'T I!? talk about confusion! No one wants to give me ONE answer and stick with it! Do I get a medic-alert bracelet?Do I wait and let me be out and about one day and it DOES decide to grow and burst and no one knows why and I die!? Or do I go against the doctor's 'assessment' and get one just in case!? My hubby doesn't seem to understand the emotions that I am going through with this. He (for some odd reason -- odd as he never trusted doctors diagnosis' without some serious questions asked and a complete analysis in his own head over things. He usually would question and ask for further tests, etc. but not this time.... am I over reacting!?
I started seeing an acupuncturist shortly after and while he has done some great work with alleviating the headaches/migraines, I do still have issue with headaches and sudden pains in my head. But I can live with them (and I guess I have to as no one wants to listen to me anyway! :|) He is also helping me with my depression and anxiety, but again in small amounts.
My depression is always with me. Kind of like that commercial where a black cloud is following a woman. I struggle with it daily... somedays its is hourly or even each minute. I feel like I can get through the moment and then all of a sudden... I wish I could just go home to my Lord. I get so tired of fighting the cloud. Somedays it is like it is trying to suffocate me. I wake up disappointed most mornings to still be here. I realize that my emotions are probably tied in with my 'non-diagnosis' ... but what to do with the feelings... I have no idea.
I am not sure if anyone reads still but while I am thinking of it. Prayer for our Sammi would be awesome! He is so lost in the world. He is making crazy decisions, smoking not only cigarettes but weed and I am sure he is into more than that and he is drinking. He gets depressed and when he gets like that it scares the heck outta me, because I know what it is like to get to that point that he gets too sometimes.I pray and I try to always kept handing all my fears and worries back to Him and let God look after things, but I am human and things will creep back into my head ... But Sammi seems so lost and where he is finding 'himself' and 'acceptance' are not places where it is true or lasting. He allows himself to be lead astray but people who don't truly care about him -- which leaves those of us who DO love and care for him standing in a spot where we are hurt and trying to understand. I am scared of what will be the next thing he does or tries to try to find acceptance. I am scared of getting a phone call that he is hurt, in jail or worse. Sam is so much like my daddy that it truly scares the crap out of me. He is always there for everyone else, expects nothing from them and all at the expense of his health, bank acct., or life! Please pray for Sam if you remember! Thank you!
Well that is all for this update. I am daily doing battle with that darn black cloud and wish I could talk to someone about it but anyone I have tried to talk to about it brush it off, say 'oh i get down too sometimes', 'what do you have to be depressed about?!' , blah blah blah.... if only i could just open my head and let someone see what is happening in there physically AND mentally....if only....
In November, I started a new med for perimenopause and depression (a kind of two in one thing😆) and the third night I took it I woke up with a slight headache.... Until I reached the bathroom where I was going to get a Tylenol. Then BAM!! My head felt like it had exploded and was on fire! It was the worse headache I had ever had. I was able to call out to Dennis before I fell to the floor - where I am not sure if I passed out or not. I was hot and cold, my head was pounding, I couldn't talk or open my eyes... The. The heaving started - followed by Dennis getting me in the tub and was trying to cool me off because like I said, I felt like I was on fire! Some how Dennis got me back into bed where I again either passed out or went to sleep. I woke up the next morning with one of those migraine hangovers that takes a day or two to recover from.
We called the doctor because we were thinking that it was down to the medicine I was taking but she said no and called for a ct scan to be done. Then I promptly forgot about it. Head was gone, gave the pills another chance and issues with them.
Fast forward to a week or so later and the doctor calls to say that they think they have found an aneurysm in the Circle of Willis in my brain; and another ct will confirm this. There was a lot of things said that pointed to possible coiling (a procedure to fix said aneurysm) and no travelling by plane for Christmas (we were planning to go to my moms in Southern Ontario). We had an appt with doctor before ct and told her again of the symptoms I experienced and some family history (I had a cousin die from a brain aneurysm a few years go). She assured us I was NOT a ticking time bomb and the next ct would give us more to go on. So we waited....and waited... And waited. In real time I had the ct on Thursday and got the results on the Monday but it felt like FOREVER!
The second ct confirmed a small 2mm aneurysm and when the doctor called a specialist, she thought he sounded annoyed by her calling with such "a small aneurysm" because they would do nothing about it but they would see me anyway (since they get paid to see me - apparently what he said).i am also good to travel by plane now 😳 too. Which is nice so I can go see my mom, but does freak me out a bit!
Now nice again we play the waiting game. Wait to hear from the vascular specialist, then wait for an appointment and I am sure a wait to,get results and see what they think.
Now there is something about this that is a bit nice to know... I have headaches.
All.
The.
Time.
It is just the severity that changes...
Circle of Willis -- My diagnosis-- a small saccular bulging of the left anterior cerebral artery and/or the junction of the anterior communicating artery
UPDATE: so we heard from the neuro vascular at the Health Science Centre in Winnipeg before Christmas and I was told by my doctor that I was safe to travel by plane to visit my mom! We had a wonderfully marvellous visit with her!! I was so glad I could go. I have an appt with the Neuro on Jan 29th ... so it is still a waiting game.
I ave joined an Annie (the short form/nickname for aneurysms) support group on FB and they have given me some support and advice for our appt. Number ONE is ask for a second opinion -- so if his annoyance continues with our appointment that will definitely be happening. Another thing I learned was that even though the doctors say there is no correlation to Annies and headaches, most people with them DO experience headaches similar to mine! so I was told to stick to my guns. (little does this specialist know I have been dealing with these kinds of doctors for 8+ years!)
I have still been having headaches and two times I have had toradol at the hospital. And I have been having just daily pains in the head which are vastly becoming a pain in the a$$.
I will try to keep things updates on here more.... but we will see.
on a humorous side note - when our son Isaac told his gf about the annie and we had the appt with the neuro the gf said (and I am SURE it was said with a smile) "What is it with your family and brain injuries!?" I laughed and that to myself... "does this mean I have to change my blog title to family of 4 survivors?" LOL -- You have to laugh or you will only cry! lol
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...
"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!
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.
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.
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?!
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...
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...
So I was alarmed this morning to find that I had NOT posted the final numbers of the 2014 TBI Awareness Bracelets yet! (sheesh.... talk about cheese for brains! :) )
I searched instagram, FaceBook, Twitter... my blog.... all the usual places I share this amazing news and I came up empty! I can NOT believe that I didnt share the results!
Just to remind you what my 2014 goal: to reach TWO new countries from last years campaign (5 provinces, 42 states, and 6 countries (the 2013 new country was Russia!)
SO without further ado here the are actual results:
6 provinces 48 states 10 countries (new ones being: The Gambia, Africa, Malaysia, Scotland, Holland, Western Australia)
I was shocked at the numbers of emails that came into my inbox at first! I received over 234 emails in under 24 hours and they kept on coming! It was so overwhelming but there was a warm fuzzy feeling that went along with the heart-wrenching letters that I was sent. I tried my best to respond to everyone of them and send as many bracelets that I could send to each request. I apologize if I missed any!
With the money raised from last years donations I bought green lanyards and I gave those to as many people as I could also! I am starting already to work on the 2015 campaign and wonder what I could do instead of bracelets again, but arent too expensive as I have to mail them out and things are just so darn expensive to begin with! I would like to keep my numbers of awareness araticles to 1500-2000 if possible but without going totally broke either! Any ideas?
Thanks for being so patient with me, but if you are a survivor or a careigver you know how life gets... not just busy but crazy busy with a new twist everyday!
I will update on Sam and Dad soon, there are lots of things to update but my head is not in a place to share some of it yet....but I am working on it! :)
Pee Wee Herman annoys me, really and truly annoys me but this picture says it all:
I have never really considered myself a caregiver to Dennis (since I married him after his accident). For all intense purposes, I am my dad's caregiver in the respect that I am his only child and closest relative. I am the one that the PCH calls when there is trouble, he is sick or needs new anything -- but someone else (many other someone else's) do the actual day to day care of him.
I was Sam's caregiver (and mom) while he was at recourperating for the better part of 5+years...
... but now he lives on his own. Now he makes most of his own meals, pays his own bills and makes his own decisions... for the most part... we still help with things that are needed and work hard to guide him in a direction that should come as second nature to most 18yr olds. (Sam is still basically 2 year behind in most social aspects of development -- so he tends to act more like a 16yr old... a lot)
He calls us when medical issues arise, when there is a legal issue and so on and so forth...
I used to be a caregiver... but now what am I? I feel lost and as if I am floundering. I am trying very hard to not meddle or interfere (I am sure if you ask Sam tho I am failing at that). Am I still considered a caregiver when he is 18 and on his own? I know I will be again if things go sideways with his health.
Have you ever had to switch from caregiver to parent over night!? How did you do it? Which do you consider yourself? Because lets be honest here, lots of people are parents and lots of people are caregivers and sadly it is so freaking hard to be both!
so to catch you up on the latest here in our corner of life:
Sam is now done with school, moved out to the town 30miles from us into a cool little basement suite and has been working for a local farmer there for about 2 months.
He seems to really enjoy his job (working with both cattle and grain -- the grain seeding and all that is included in that is a new adventure for him).
On this past Friday, Dennis and I headed into Brandon for a quick trip to pick up some farming supplies and received a phone call from Sam that should he go to the dentist to look at the tooth that the calf broke when it kicked him in the jaw!
We got things sorted and got him to the dentist before he left for the weekend and then off to the hospital to check on concussion risk and other issues that may have come from it. He was checked over by the nurse and sent for X-rays (in case of a fracture) then we were sent back to the doctor to have him fully checked out.
I went in the office with Sam for a few reasons (one of them being that we are not fond of this doctor or the bedside manner but in our small town {and saddly even neighbouring towns} there is no choice of doctors -- you hav to use the one they 'gave you' basically)but mostly for moral support as he is not used to having to deal with these medical issues on his own AND lets not forget ... well... he forgets! So I was there to help him out.
Firstly, she didnt even look at his X-rays, stating that she could 'see he had no fractures', then when he told her about his BI and seizures and whatnot, she 'listened' (using that word loosely here) because as it turns my concerns were totally founded -- but that comes later. She said he had no concussion but it was good for him to come home with me so we could be there if 'anything happens' (now what would happen if there were no concussion or fractures?!) Take it easy this weekend and no work til Monday...
NO CONCUSSION--- yet he had blurry vision and a headache... ok... maybe I am over protective.... but really!?
NO FRACTURE -- from a glancing look and a bit of poking with her fingers... ok no screaming from Sam either... so thats good.
Sam came home with us, slept crappy, ate very little and looked like hell on Saturday morning. Swollen face, circles under his eyes and tired. But he got thru the day and did a bit of tinkering, admittedly he went for a ride on the dirt bike (which I was against) and then headed home to meet some friend for a movie intown (but no driving). Woke up feeling a bit rough on Sunday but felt better than Saturday -- so he must be on the mend. Then up on Monday morning for work...
dizziness, nausea, blurry vision and a general feeling of crap. NO going to work, calls me and i tell him to get to the doctor again and make sure she looks at the xray AND listens to you!
Luckily h is able to get in in the afternoon and this time she listens ... i think.
Her diagnosis is that Sam was having a delayed reaction to Fridays activities (concussion!?!?!) and he probably has an infection -- so med's so that it keeps a fever away and risk of seizures -- and no work for another 2 days! (updated count of days off now 4! Four days with no pay and Sam is stressing a bit from it...) Some things just never change! I thought we were done with doctors and them not listening to us about Sam and his BI. Doctors need to start listening to the caregivers about things - no matter how small or 'insignificant' they think the information is! We usually know a lot more about BI's, symptoms, new treatments, expectations... you name it we usually know all about it! JUST LISTEN DAMN IT and stop making us feel small and crazy! We 'specialize' in this, they usually don't.
**sigh** Ok Rant is over: Sam is starting to feel better and hopefully back to work tomorrow.
so as I am up to my ears in envelopes and bracelets, I am thinking of changing things next year for the bracelet campaign.
I will still love to do the hand written parts but I will be investing in return address labels or a stamp, I will cut down on the envelope decor, the letter will be signed by me and then photocopied (I will still address each letter and still write notes if needed) and I think I may go all with one size envelope so that taping it shut may not be necessary.
If you are wating for bracelet(s), please be patient and know I AM working on it! I am a bit overwhelmed with not just the 2014 campaign but also we are busy with farm life (calving season, pigs farrowing, chicks are here, rainy weathermaking spring work hard to accomplish) family life (Sam moved out, his graduation and getting ready for it, Hannah is busy with baseball and Isaac with his music and art) cleaning up from winter messes in our yard.... I am beat! But I am getting this done!
Today I had some help from some friends and my mother in love! Three of these lovely ladies addressed and prepped my envelopes (marking them so I know how many bracelets, stickers, whether a survivor and/or caregiver, etc.) , another lovely stamped the envelopes and pinned states/provinces/countries on my map! All the while I was writing on letters, filing out cards and stuffing with bracelets. (set aside to be taped shut later tonight). I was so glad to have the help today because addressing sometimes slows me down as names tend to sound familiar to me and I have to check if it was because I had already done their bracelets or from the year before.... usually it was because I had emailed everyone first ... **sigh**
All of this is why I need to make this a more stream lined project next year! So any and all ideas will be welcome!
today is the day I guess.
after 5 long years of medical appointments, long drives, days in the city at the hospital, waiting for appointments to be done while I wait at the Ronald McDonald house, constant phone calls looking for help, nights that never seemed to end as I watched him sleep in a hospital bed, days that I wondered if they were ever going to get here .... are here now.
Sam moves out today and my heart is so .... happy for him to be able to be at this place where we wondered if it would ever happen and yet tired from holding in all my emotions this week, aching from worry of whether it is going to be too much for him, breaking from the knowledge that he is not my little Sammi anymore. I just want to hug him and never let go....
We have all been through so much mental anguish these past few months with him that I know it is for the best for us all. We will not be so touchy, so grouchy and so short with each other. It is time for him to stand on his own two feet and learn to make his way in the world. It is time for him to start making mistakes and most importantly to learn to deal with the fact that he does indeed have a brain injury and has to take measures to learn to look after himself AND the rest of his world.
We found a great basement room in town {which is 30minutes away butonly 5 minutes from his work) where he will share the kitchen with the owner. He has a large area in the basement to use for a bedroom and a living space, a huge bathroom (with laundry facilities), use of the kitchen & yard. He has no yard work to do and there is the chance of a housekeeper once every 2 weeks to do light cleaning. He will not have tv (until he has saved up some money to get cable or satellite) but he does have internet (so once he has saved up for a laptop he can get netflix or whatever to stream tv). He does have a tv with a DVD player so he will be good for movies.
I am excited for him but at the same time I am worried (I am mom...) I am worried that his landlord will get frustrated with his memory issues before he has a chance to get settled into his routine. I am worried that he will not look after himself with eating (and all the things that teens do when they leave home) and he will get sick -- which can result in him seizing, which means hospitals, no work.... not even going to finish all the worries I have here. Sam was looking fairly stressed yesterday as we were packing and making lists of groceries and things, so we a forgoing church today so that it isnt so much activity {and emotion} for him and we will head in to the house after lunch. These are the things I mean when I say I worry he doesnt realize the toll that things take on him and all the preparing we have tried to do with him over the years all come down to now. This is where his denial kicks in and he will over do it and ignore the signs his brain will give him before it shuts him down....
I am sitting here this morning trying to stay positive and tear free today (which I have failed at already). This IS a joyous day for Sam and for Dennis and I .... and I need to enjoy it as so, but my heart is still such a mess, my head can't seem to shut off and the tears keep trying to spill.
I have told the 'landlord' about Sam's seizures (in case he happens to have one/some and he hears them OR Sam wakes up and knows he had one he will need a ride {or 911 call} to get to the hospital) and as much as I wanted to explain all the small issues that he may (I am hoping to not say will) notice but I didn't. It would be too much to explain, Sam would be embarrassed and it might possibly freak the landlord out and rethink his new tenant. But he does know of Sams injury and I hope maybe that is good. I know the landlords mom so he may know more than I think.... lol thank goodness for small towns.
... to grown man and graduate <3 td="">
From 12yr old boy ...
I know there are mom's (and possibly dad's) who will read this and not have a clue as to my worries and write them off as I am an over bearing mom, or flippantly say "oh you are worrying too much, he will be fine" but until you have walked the journey I have in the last 5 years you have no idea. To be honest Dennis has no idea of all that Sam and I have been thru. Sam is the only one who knows this whole journey (and even that is not complete as his memories are scattered due to his BI and the year he lost on seizure drugs....) and he is nervous but excited..... so I will be strong {at least stronger than I feel} for him as I have been the last 5 years and I will not let him see me cry.
So for the last 5 years I have been phoning and fighting and phoning more to try to get help for our son! From when he was 12yrs old we were constantly told from the medical professionals and government offices that there was not much they could do for us "now"... when he is an adult there will be more help available. (we were quite frequently reminded {like we could ever forget} that there was no 'real help' for Sam as most were not 'equipped to handle or deal with youth brain injury'.
ya... not a big surprise to us here in Manitoba.
Even when he had seizures, we were sent to the 'adult epileptologist' since he as 15 and soon to be transitioned to them anyway, only have us tossed like trash to the curb of the hospital when we were finally being admitted in for an week long ambulatory EEG! (this was after they messed with sleep, food, meds and moods -- AND Sam had a fractured ankle!!!) Then we were moved over to the 'child epileptologist' who did nothing but drug our son to the max and created a whole other lifetime of issues we will deal with! And had plans of keeping him on the high doseages of meds until he was 17-18yrs old {basically until he was old enough to transition to the 'adult epileptologist' .... again} We could not get in to see any psychologists, psychiatrist or counsellors either without getting "we are not equipped with dealing with youth with Brain Injuries" OR the best one "you are handling this great" "call us if there are any issues" (from 3hours away and a mile long waiting list)
So now he is 18yrs old, has never had any real help in dealing with his stress, BI or issues that arise with BI's (addictions, PTSD {which we were told there was none}, etc) and is in full on denial about it all!
We have been trying to get a disablilty tax credit for him (so he can work but have a bit of extra wages to not have to claim) and we were told that NO he does not qualify. We used his neurosurgeons diagnosis of "long term permenant brain injury", "at risk of seizures", "some cognitive issues"... and we were refused. We thought we would go the route of the neurosurgeon AND the psychatrist he saw for a few days while in the CATC (child and adolenscent treatment centre) from 2 years ago. He just informed me that it is almost impossible to get the Disability Tax credit (it is very convoluted and full of crap) and he only has a hand full of patients who get it. It is easier to get Disability in the form of monthly cheques (Canada Pension Plan) BUT Sam doesnt qualify for that either!
So basically this guy- our Sammi- has had NO HELP (other than us and loads of prayer) to deal with his BI (in the formative years where he really could have used it) , so we are at a place where he is now in denial of it all -- and there will be no help for him in the future until he hit absolute rock bottom and has to try to find help then (and honestly I am scared of what that will entail with him) which I am sure we will be told it "should have been done earlier on".
