Up Up And.......

Something both shocking and amazing has occurred to me in the past few months.  My kids don't remember all the cool stuff I did with them when they were charging through the toddler years.  It then painfully occurred to me, that it was MY memories that they didn't remember.   I've sat on this for a few weeks and have come to the realization that it's ok that they don't remember finger painting, homemade play dough, play dates or museum outings.    Because THESE are the influential years, the preteen and teenage ones.  These are the years my kids will remember and I had to throw a brain tumour in there for them.  Ugh...I've cried about this, sobbed really, thinking why do my kids have to deal with such a terrifying burden at such influential ages.  That is not fair my friends, not fair at all.  However, the only fair I know is the one with the ferris wheel, so just like the Merry go round we need to hop on.  I will take them as high as I can while I can and hopefully we will get many more years going around and around.

 There's nothing stopping me from taking some homemade play dough up there with us is there?

Merry Go Round

Do you remember them?  Merry go rounds.  The old school kind, a flat round disc with 6 shinny bars, everyone would run as fast as they could, jump on and spin at high speed.  I can remember being dragged, falling off, missing as I was jumping on...ahhhh good times!!   It's crazy to think how dangerous they were, I guess that's why you don't see them around anymore (although I don't frequent play grounds now that my kids are older...so I may be mistaken) My point is, spinning around at high speeds, facing danger was exciting.  Now at 41, I'm back on the Merry go round, still spinning, still facing danger however, the excitement part has changed, the shinny bars have lost their appeal.  I want to jump off, walk away from this madness, move on and never look back, but my brain tumour won't let me.  One would think I had control over that, but I don't.  The only thing I can do is hang on tight and with each rotation try and smile though it.  I'm grateful and thankful for the wonderful care I receive however, I'm most grateful for the handful of people who have stuck by me through this.  Those who pray, those who call, I'm glad you are on my Merry Go Round

Want to Smile?

Everyday is different like I have written MANY times before.  With very little sleep last night, I plan out my day, which started with a quick flip through Facebook.  Of course anyone who has a Facebook account knows that there are always the "eye rollers" and you wonder why on earth do you have that person as a friend if they drive you that crazy!!!  However,  you then come across a friend's post that brings you to tears.  The good tears, the ones that make you have a renewed faith in humanity.  This has nothing to do with brain tumours and everything to do with my heart.  It affected me so deeply that I want to share this short video with you, it deserves all the hits it gets.  :)  Enjoy....oh a get a Kleenex

Click Here
http://www.cbsnews.com/video/watch/?id=50141588n

It's Best to Sit in The Back

Last week was a busy, which in turn means my mind needs this week to recover.  This truly has to be the oddest life experience I have ever had.  I just don't "work" like I used to.  My brain needs extra time for it's thoughts, my body needs extra time for it's daily chores and I'm figuring out that my soul needs extra time for itself.  Healing one's soul is not easy.  I take comfort in reading other's stories.  There is so much encouragement and understanding in the Brain Tumour Community that I find myself gravitating there.  All of these people and their families understand this roller coaster ride.  Days of feeling like you are almost yourself again, just to find out the very next day that exhausting once again took over your entire being.  I take comfort is learning from these families that they too experienced this and it's not easy, it's not fun, however, through positive thought you can make the best of it.  So, here I sit today on another #BrainTumorThursday wondering what I can contribute through social media that will help raise awareness.  Then I realize that the best place for me to be today is riding the back of the roller coaster, watching and listening to all the people in front of me who have already went up and down these hills.  I can learn from each and every one of you on this ride and for that I thank you.

#BTSM

Yes that's the Twitter tag for Brain Tumor Social Media, Thursday is here again.  A great way for information to get passed around about brain tumours and the important need to reach as many people as possible.  Now I'm not a Doctor, obviously, however, reading articles, speaking and connecting with others, sometimes shows that Brain Tumours are the final diagnoses in the long chain of events.  Why?  Is it the cost of MRI's, is it that sometimes a brain tumour has to cause a significant symptom before it is recognized that it's even a possibility.  Not everyone "smells burnt toast".  So here once again is a list of symptoms that could possibly mean you need to speak to your Doctor.  Thank you Brain Tumour Foundation of Canada for this information.

~Behavioural changes
~Cognitive changes
~Dizziness or unsteadiness
~Double or blurred vision
~Frequent headaches
~Hearing impairment
~Morning nausea vomiting
~Seizures
~weakness or paralysis

Remember brain tumours do not age discriminate, if someone you know and love has some, any or all of these symptoms, talk to your Doctor.

For me it was headaches, migraines with loss of vision, dizziness and finally, Trigeminal Neuralgia.  Not the diagnoses I ever wanted to hear but was certainly relieved that there was something causing the madness in my head.

Help Wanted, Apply Within

We are into the second week of September and I have no idea where the Summer went.  All I know is, it was lazy.  Now it's back to crazy ville with early mornings,  late nights and Doctors appointments in between.  I attempted WAY to much today thinking if I was going out I should get "things" done.  Yes it's a common theme, it is safe to say that I'm stupid when it comes to having no idea how to take it easy.  And yes, I always pay a price when I do it, do I learn, somehow I don't!!

So last night I attended my first support group for those of us walking around with these blobs we call brain tumours.  I really didn't know where I fit in, oddly enough since I too am sporting one of those blobs.  I guess it's more the support group thing, I've never been to one before.  However, before long it was easy to see that I will be able to learn a lot from the others and I'm sure in time will take comfort in knowing that someone else actually understands.  Also hearing the common theme of allowing the brain the time it needs to heal in conjunction with dealing with visual/balance issues, made me realize that I just need to get over my superwoman self.  Ugh!!

Now that I'm "out of the house more" it has become evident to me that writing to communicate it way easier then talking.  I can spend hours writing a blog, it's sounds good, planned and organized when I hit publish.  However, talking is instant communication and when my brain is over tasked, my thoughts and harder to form.  It seems that someone took the filing cabinets of my brain and mixed everything up.  Dear Lord, I've lost my brain's secretary!!! I need a new one ASAP I wonder how a job add would read for that?

Wanted: Secretary

Looking for an experienced Secretary who has excellent organizational skills.  Must have advanced working knowledge of the inner brain filing system, which includes current events, past skills, memories and the body's inner workings. Must be able to multitask in an ever changing brain which is under a great deal of stress. Be able to demonstrate and manage routine correspondence and file appropriately.  Confidentiality is a must.  Selected applicant must understand that this brain's filing system was breached in January and all previous files are currently misfiled and under review.  Some Personal Assistant duties may also apply which include but not limited to; public speaking, running errands and attending Physician appointments to take notes.  Finally, this applicant must have a strong enough personality to indicate to owner when to stop and rest.  

Any takers?

Pain In The....

So the last little bit my Trigeminal Neuralgia sends "subtle" shocks to my cheek but nasty ones to my eye ball.  I can't feel my cheek or eye ball.  Nope...no feeling at all, none in my eye brow or forehead either.  But today I got sucker punched.  I can honestly say that nerve pain in places you can't feel is not only weird it's down right mean.  It's like having a bully live inside your own body.  This bully decided to stab me in the right eye brow, yes the one I can't feel.  It's exhausting and quite honestly I'm a little disappointed in my brain.  It's the whole I control you...no no you control me thing we have going on...brain vs Kelly.  Now if I was a betting women I would pick me, cause I'm a get out of my way I can do anything kind of girl...no chance for a brain.  However, I've heard rumours that this "brain" thing I'm up against has some pretty sly tricks up it's "cavernous sinus abutting the cerebellar peduncle"...ya that's short for a stupid location for a brain tumour....see "it" thinks it's soooo smart with all the fancy words but really I have "google" I can look that stuff up, which in turn makes me smarter then the brain.

To answer you question...NO I have not been drinking, just hanging out with the overly smart brain that thinks too much, which really is a pain in the.........

Head to Toe Happy

What does a girl like more then chocolate?   Being pampered,  Ahhh yes, to sit and have your nails go from bland and sparkly.  Your feet go from embarrassing to sandal happy and your make up from non existent to glam.  What more could a girl ask for?  Well, how about taking the 2 inches of graying roots and restore then to my natural colour with a lovely a hint of foils.  It all sounds too good to be true but in fact this is how I spent my Friday afternoon, with the girls from Urban Hair in Sackville.  It was a fun after noon with lots of laughs and a feeling of truly being taken care of.

Then of course, one must head of out with the love of your life to an amazing dinner at Onyx.   I enjoyed everything about this chic little restaurant located on Spring Garden Rd in Halifax.  The service was top notch, the food was excellent and the company was way better then any chocolate.

The entire day was a gift, Thank You Urban Hair for making me feel like a princess.  And Thank You to our friends James and Nancy and Jim and Helen for the gift certificates to one of the best little restaurants Halifax has to offer.  What an amazing day.