Just a short note about this blog.

For timeline purposes, posts from 2008-2014 are summaries of significant happenings in those years. Please use the Blog Archive links to start at the beginning.

Past tense/Present tense language may change within a post, but those variances should not impact the overall telling of my experiences. I am Canadian, therefore, the spelling of some words (tumor/tumour, color/colour) may vary depending on if it's my wording or quoted text. I have tried to include both key words in the labels of relevant posts.

The blog contains medical terminology. I have tried to provide explanations or definitions when they occur. Occasionally medical images (nothing too graphic) are included to further explain or demonstrate.

Explanations and graphics link to original sources wherever possible with the exception of my personal photos.

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July 28, 2015

MRI with Contrast

Interesting article posted today, one that could be of concern to people with IIH who have had multiple MRI scans with contrast. I know I personally have had many MRIs since I was diagnosed in 2012 and every one of them has been with contrast agents. I don't know if the contrast mentioned in the article is the same as the one used in Canada, but definitely something to keep in mind.

It's not known whether these deposits are harmful or can lead to adverse health effects. "To date, no signs or symptoms of adverse health effects and no pathological changes have been associated with these gadolinium deposits in the brain," the FDA notes.

For the full article see: Gadolinium Brain Deposits on FDA Radar

I received my referral to my next neurosurgeon last night. I'm going on to my third NS. First one retired, second one has been on leave since at least April and now I have a referral to this one as my follow up after my hospital stay in May never did contact me with a new appointment after his office cancelled my appointment. My appointment is booked for August 6th.  Not that long of a wait considering I've been in kind of a holding pattern since June with the follow up situation. Of course, the appointment notification came with the standard "if unable to wait, please go to nearest ER", which, although there is a hospital in Brantford, I interpret as "please go to ER at Hamilton General Hospital" simply because Brantford doesn't have the neurological facilities Hamilton does. 

July 27, 2015

Family, Cakes and Dentist...

Added 2 new cakes to the Piece of Cake page. (Recent cakes are added to the bottom of the page..)

Both of my sisters ended up with late cakes this year. Mandee got a giant carrot cake cupcake with butter cream icing for her 26th, and Tara got a butter pecan with cream cheese layer cake, decorated with the character symbol for Sailor Mercury from the anime series Sailor Moon for her 27th.

Rachel is growing up way too fast! She lost her first tooth this weekend.  It's been loose since the early part of June so it took a while.  She's of course thrilled that the tooth fairy visited!

Rachel lost her first tooth this weekend

Danyael (pronounced Daniel)

Catelynn loves the new doll house!
Speaking of kids growing up fast!  We went to London ON on Saturday with my mother and youngest sister to see Tara and her little ones.  Danyael is almost 6 months and has grown up so much already! Catelynn is 2 and a  half and had a great time playing with her cousin Rachel with a little people doll house Rachel has outgrown.

Rachel with Catelynn.

I have a dental appointment tomorrow which I am not looking forward to it at all! I've always had issues with dental stuff, but I don't have much choice anymore.  Three teeth have cracked and broken due to the prednisone and my rheumatologist wants to start me on a bone builder. Before he will prescribe the medication, I have to be cleared by the dentist that no extractions or dental surgery is required.  I've been taking vitamin D with the prednisone and Imuran, but I guess it's not enough and my teeth are being affected by insufficient calcium absorption.

July 22, 2015

New Glasses Arrived

I picked up my new glasses from Sears!  

Heavier frames
 tortoise shell
Lighter frames
 purple tint
Amazing how quick they were. I ordered them on the 15th when Rob got paid and was told 10 days for them to be in.  Well, I got a call Monday night saying they were ready!  5 days including the weekend, now that's great service!  I got 2 pairs of progressives with the deal they had on offer, $25.00 out of pocket after insurance. I certainly couldn't go wrong with that deal.  

2 slightly different frames, one a little heavier with a tortoise shell look, and the second pair are lighter, with a slight purple tint to them.  I decided the darker, heavier frames would be for going out, and the lighter pair for every day use.  I had the anti glare coating added to the lighter pair as I would be using them more frequently with the television and computer screens.  

July 20, 2015

Weekend Changes

Big weekend for changes!

I decided it was time to get my hair cut.  I've been trying to deal with my hair growing out of the shave I got for my surgery back in October.  It has grown significantly, but it is to the point where I can't do much of anything with the shorter hair underneath.  I find my hair gets too warm, so I have a tendency to wear it up off my neck. This means that the underside usually doesn't fit into the pony tail or braid.  Worn down, my hair just looked overly long and messy.

Down and loose
back with hair down

I ended up taking more than 10 inches off my hair in the long run.  I really had to push the hair stylist to cut it though.  It seemed like she was almost afraid to take off the length I was asking for!

The end result is a layered cut that falls to my chin.  I added a colour boost on Sunday, thought it is barely noticeable until I get out into the sunlight. To add to the changes, I just received a call that my new glasses are ready to be picked up! I can't wait! Looking forward to being able to see without having to struggle, and not having to take my glasses off and on depending on what I'm trying to look at.

Added benefit to the cut, less weight tugging against my scalp however it hasn't made a major difference to the headaches which I was hoping for.

new cut
Noticeable in the sun

July 10, 2015

Apointment and more

I had my regular appointment with Dr Rodriguez on Wednesday. Visual Field Test results were pretty consistent with previous tests, showing no further vision loss at this time. An examination of my eyes showed no papilledema, which he is happy with as it indicates the pressure hasn't gotten too high yet.  I was of course advised to call him for an immediate appointment if I have any changes in my vision.

Based on my stay in the hospital back at the beginning of May, and the lack of follow up with a neuro-surgeon my next visit will be in approximately 2 months instead of the usual 4.  He is also going to try getting me in with someone to follow up on the tied shunt and increasing pressure.

Rachel has been away since Saturday. She went to Great Wolf Lodge in Niagara Falls with her cousins and grand parents, then up to her Aunt's place in Innisfil. She comes home Saturday or Sunday.  Instead of enjoying the peace and quiet, I decide it's time to redo her bedroom. Big changes in the look of her room.  It started out with the typical mess a 5 year old can have.  Toys out of place and just generally over run with too much stuff. I weeded out the toys that she has outgrown and put everything back in it's place.


I made some changes to the wall hangings and finally got her Frozen curtains in place. We also added some purple vinyl to the panels of her bed and flipped it over (Kura loft bed from Ikea) and created a reading nook under the bed with her bookcase and old crib mattress. I think the end result looks pretty good, and I can't wait for her to get home and see it!  My only regret in redoing her room was the fact that I have started wearing a Fitbit Flex that was given to me by my good friend Barb.  I didn't think to put it on until after I had finished working on Rachel's room! All that activity that didn't get tracked!

While the following isn't IIH related, it does demonstrate that anyone can have a bad day!. This is a true story of something that happened to my older daughter Krystal while at work one day.

Image and video hosting by HilariousGIFs.comKrystal  - ok so basically here's the run down in "pretty terms". Its really bad/Sad xD 

On my last break, needed to use the bathroom in all ways. Went into the stall and did my business and realized - no paper - 

I had left all means of contact (Tablet and phone) in the lunch room so i probably just sat there a good 5-10 minutes doing the shake/drip dry but i couldn't just leave it like that due to the business at hand. 

I pulled up enough that i was covered (thankfully i was wearing my work apron) but not enough that i was going to touch my underwear. I shimmed into another stall but half way to a lady walked into the bathroom XD 

I informed her the stall was out of paper and was grabbing a handful. She informed me she needed the higher toilet so i apologized; handed her the ball of TP i had just grabbed and quickly locked myself into the other stall trying hard not to laugh while she did her business. 

I waited till she was gone, Cleaned up and quickly left the bathroom to finish my break in a fit of giggles. xD 

Yep True story! Note to self; ALWAYS take a phone into the bathroom then i could have texted my manager to bring TP into the bathroom to refill instead of having been nearly caught with my pants around my hips. Thank god for Aprons xD
I can only hope that she wasn't the one responsible for washroom maintenance that day at work!

July 03, 2015

Glasses part 2

So..I decided to shop around a bit as I wasn't completely happy with the glasses I picked out last weekend. I still have a few days before I can finalize my choices as the insurance company doesn't make exceptions, even in cases where eye exams are required annually.

Sears has a special going right now.

Sears Offiers

So I decided to see what they have to offer.

I ended up picking 2 pairs for less than my original choice, with anti glare treatment. The pair on the right have a slight purple tint to the frames, picked for me by my daughter Rachel.

Rachel had another lesson tonight, this time on Bailey, who happened to be the first horse she rode.

Rachel leading Bailey in for her lesson