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 11, 2017

Summer Update

Not much change happening on the IIH front. Headaches are still ongoing. I saw my neurologist recently and she is pushing to get me off the OTC meds. I completely understand this, Tylenol and Ibuprofen are hard on the body, and daily use lead to rebound headaches, which could be contributing to the daily headache issue.

Dr Giammarco wants to go the Botox route to treat the headache cycle, alternatively, there is the medical marijuana for chronic pain option available in Canada.  Currently, I'm looking into options, doing some research and weighing the side effects.

Horse shows!

Rachel has competed twice already! Her first show was in June. All shows are held at the Hamilton Hunt Club in Caledonia

Getting ready for the show


2nd place ribbon! 

2nd, 4th and 5th. Pretty good for a first show!

The second show was July 2nd. Canada Day Theme

Schooling the day before the show!
Testing out the quarter sheet we made for Patch.. aka Toes in the Sand!

Toes in the Sand!

Patch wasn't happy with the sheet so left it off for the show. 

4th, 4th, 7th, 8th place ribbons for the Canada Day themed show! 

May 31, 2017

Another Year Gone!

Celebrated my birthday Monday! Started out the day with a visit to the Neuro-Opthamologist. Good news there, things are still stable so can't complain! Saw the Rheumatologist a week ago and he's happy with my progress. As far as he's concerned, the pachymeningitis has been in remission for 5 years, and it's time to come off the Prednisone and Imuran! YAY!

Started with the Prednisone. Get that demon stuff gone! Hopefully, once my system adjusts to no longer being on the steroid, I can have a little more success on the weight loss side of things once again.

Next appointment comes up shortly. Back in to see the neurologist. Still haven't had much success with getting off the OTC meds for pain management. Of course, with the crazy weather systems we've had going on this year, the pressure from the storms going over has played havoc with my head. I think we are going to have to adjust my Topiramate once again. Will see what happens once I see her.

Came across a great article today. Some "spoonie hacks" to help chronic pain sufferers cope. Click on the image to open the page in a new window.

If you're not familiar with the term "spoonie" then The Spoon Theory might be a good place to start!

In other news, Rachel has her first horse show this weekend! She's come a long way since her first lesson and I can't believe she's going to be entering the arena in a full out competition! She looks so cute in her show attire though!

Rachel dressed for Show

Bareback on Patch

February 15, 2017

Parenting done Right!

This post has absolutely nothing to do with IIH... feel free to skip it, though I hope you won't! In fact, I hope this story is shared, I would love for word of it to get back to the other family involved.

It's a short story of something that happened while my family was out for dinner on Valentine's Day, and it made Rachel's day in her words the best day ever! 

We went out for dinner, just something simple, Wimpy's Diner in Brantford and given Valentine's Day this year was a Tuesday, that meant it was also lesson night for Rachel, so after dinner we were headed to the barn, so she wasn't dressed up in anything special.  Red plaid shirt and red stretch pants comfortable and practical for riding in, red in consideration of the occasion.

After dinner, as we were getting ready to settle up and head out, another family headed past our table and a little boy spotted Rachel.  He was close to her in age, I would guess no more than 8. As he spotted her, his eyes lit up and he smiled, and next thing we knew, he was walking past her and spoke to Rachel, nothing much, just said simply "hi Pretty" to her as he went by.  She wasn't sure how to react, and got all quiet, but recovered her manners to thank the little boy when he approached our table and presented her with a yellow sucker before smiling again and leaving.

I heard his parents telling him how nice that was of him as they left the restaurant, and while we didn't have time to react other than to say thank you to the little boy, I'm making a point here of saying yes, it was an amazing thing to see and hear and I hope this little guy continues have this amazing attitude toward others!

They may never hear it, or be aware of it, but I want to thank those parents for teaching their son to be respectful of little girls and to treat them politely. He made my daughter's day with his kind words and actions.

There are so many stories out there of children treating one another in such negative ways, I wanted to make sure that I put this one out there to say that occasionally the good ones happen, perhaps they just don't get told!

Speaking of Rachel riding tonight, here's a quick clip from her cantering session tonight!

February 13, 2017

Valentines and Horses

Happy Valentine's Day!

Hard to believe it's February already, seems like I was posting Merry Christmas not too long ago...

Truthfully, that was the last time I posted, I know, I've been really slacking about posting!

It's extremely difficult to post on a regular basis when you're in a holding pattern. Nothing new has really been happening with my head lately, and I hate to keep saying the same things over and over. It gets boring fast! My doctors keep telling me the same thing, to the point they are pushing my follow up visits from 3 months to 6, which is good but they are issuing the warning to contact them if there are any sudden changes.

Dr Giammarco, the neurologist, is following the same pattern and keeping my visit with her on the same schedule. I've gotten a referral to a new Endocrinologist (for the thyroid stuff). I see her in July, so for now, it's a matter of keep doing what I've been doing, keep taking the mountain of medication every day, reduce the OTC meds as much as possible (aim for no more than 15 doses/month apparently, still working on this one).

I promised Horses!

Horse Therapy - (not a Southern Cross Horse)
I have to admit, many times, I've been at the barn for Rachel's regular lesson, with a pounding, throbbing head. At 7 years old, Rachel is tiny, and she needs help getting ready for her lesson and while the facility she rides at is amazing, (Southern Cross Equestrian Facility), the helpers, or "minions" as they are fondly referred to by the barn family just don't always have enough hands, plus, I like to get in there and spend a little time with a brush or curry comb. Just something about the change in vocal tone while talking to a pony and the motion of brushing them, you find yourself relaxing.

Of course, once the pony it's tacked up and ready to go, Rachel takes over! She's just starting to learn to canter.  We had a lesson recently where she was supposed to ask for a trot and managed to get a canter accidently from the pony, surprising both herself and her coach. Fortunately, everyone kept their head and it all worked out fine. The next lesson her coach suggested they learn the canter under the controlled environment :)

As you can see in the video, it's a learning process and only a step or two are actually at a canter before dropping back down into a trot or walk.

Rachel's Potential Summer

Rachel is really loving the horse stuff, or to put it properly, the Equestrian Life! She's actually looking at getting involved with the show team this year! The Grasshopper Series is for Beginner Show riders and Rachel would be looking at starting out with Leadline, meaning she would be on a pony and would have a helper in the arena with her, though she would still be responsible for guiding the pony herself.

On that note, I spent 4 years at Conestoga College in the IT programs and haven't had much opportunity to put it to use thanks to this medical condition, but I've been using this blog and some casual consulting to keep some of my skills updated. Let me know if you need a bit of HTML/Web help and we'll work something out!

Oh, one last thing! A good friend of mine has gotten her website up and running recently. She is a direct seller for Avon and will also have Regal products available once they are up and running again.

Link To Biz By Barb's Website - Opens in a new tab

November 21, 2016

Holidays are coming!

The seasonal Controversy- best response

The title says it all! This one isn't IIH related once again, but it is addressing an issue that does cause a bit of a headache for many!  

One of my biggest pet peeves start up this time of year! Constantly on social media are the influx of posts of people complaining that you can't say "Merry Christmas", you have to say Happy Holidays, you can't have a Christmas Tree, you have to call it a "Holiday Tree" etc etc. 

Honestly, I haven't seen much of this outside of Facebook. I can't find any official publications that support this belief, at least nothing current, some articles published in 2013 regarding the controversy. Somewhere a couple of years ago, someone had an issue and it has perpetuated and festered over time to the point where everyone seems to have the opinion that people are not allowed to express the holiday wishes they are comfortable or familiar with. 

Now, I do understand that in the public school system, there has been some concern raised over the holiday season given that not all students in the school system celebrate Christmas, however, and this is my personal opinion here, I don't think banning the mention of Christmas in the public system is the answer, a better approach might be to make it a teachable, multi-cultural moment and allow students to share in one another's holiday experiences. This would require some open-mindedness on the parents and teachers behalf, but, in the long run, it could help to move past the issues that are arising each year and help people to accept a broader holiday season.

My suggestion would be, turn an area of the school into an international holiday display.

Let students put up a Christmas Tree, allow other respectful displays such as Kwanzaa Candles, the Menorah, and include some less familiar symbols from cultures and traditions that students may not immediately recognize. While I don't normally link to Wikipedia, I'm making an exception today. This is a listing of December holidays, including some fictional/virtual ones (interestingly enough Frostfell the Everquest holiday season isn't included!)

Player seasonal reward - Everquest

Like the opening image suggests, the simplest response, no matter what holiday greeting you receive, is "thanks, you too!", alternatively, if you're comfortable with Merry Christmas (or Happy Hanukkah, Happy Kwanzaa, Happy Holidays... you get the picture), then make that your go to response regardless of what is said to you. 

And, in case I don't get back here before hand...

November 01, 2016

Halloween and Remembrance Day

So this post isn't IIH related, I occasionally take time to just enjoy the holidays and current seasons and try to ignore everything that's going on in my head! Today is one of those days!

Happy Halloween!!!
Ok, it's a day late, but I wanted keep the post together :)
Our Pumpkins this year 

 Rachel wanted a horse pumpkin given her horse craze, I completely understand!  Daddy did a great job considering his first time in years making a more intricate carving!  Rachel had a great Halloween.  She couldn't get her first choice of costume, Owlette from PJ Mask, but personally, I think her alternative was a much better choice! She choose the robe for the hoop in the dress, she just loves dresses that "twirl and spin" when she dances around, but it did add an eerie effect when she walked around!  I edited my first picture here to dim out the hallway where the picture was taken... I think the effect is quite spooky over all! 

Slightly edited (background dimmed) picture of Rachel's Halloween costume.   

This shot of her costume is unedited, taken in the elevator of our building .... 

Costume in natural lighting. The mask was a last minute touch that just set off the look perfectly! 

I put together a quick CSI outfit for myself, not your typical Crime Scene Investigator though!
I was a Candy Sweetness Inspector!  Someone has to check out that candy! 

Now that Halloween is over, Christmas and December is not far off.. but before those celebrations kick in I think it's important to give Remembrance Day it's proper respect!  Stores have Christmas decorations on the shelves even before Halloween stuff has been removed, and not a moment is taken to pay tribute to those who have served.

For those who are not familar with Remembrance Day 

Canadians recognize Remembrance Day, originally called Armistice Day, every 11 November at 11 a.m. It marks the end of hostilities during the First World War and an opportunity to recall all those who have served in the nation’s defence.

I have done a little research into my grandmother's arrival in Canada as a warbride, but the information is not easy to find.  I believe the ship that she arrived on was the Letitia, docking in Halifax at Pier 21 in 1946. My grandparents settled in Sault Ste Marie Ontario, where they lived out their lives. My grandfather passed away in 1980 and my grandmother in 1982.

My Grandparents
Gerald and Linda Dewar
Married in England 1945

Remember Me - Poem from Canadian Legion Magazine 1980
I am not the author, and I do not have the author's name. Any information regarding the author of this piece, please let me know so I can give appropriate credits! 

October 15, 2016

October 2016 Update

I've been neglecting updating lately, things haven't changed much, so there hasn't been too much to say lately. I'm still in a holding pattern. My headaches are still occuring daily with not much change, my vision is stable and no new issues have come up. I had my annual MRI done yesterday and will be seeing my doctors soon for my regular round of visits.  I have added a nuerologist to list of doctors, and she has started me on a new medication in the hopes of reducing the headaches.

Torpiramate: Topiramate is classed as an antiepileptic medicine. It is usually used to prevent seizures in people with epilepsy and there is another leaflet called Topiramate for epilepsy which gives more information about this. However, topiramate has also been found to prevent migraine attacks from occurring. When used for migraine, it may not completely stop every migraine attack, but the number and severity of attacks are often reduced.  Patient Info on Torpiramate 

I am really dealing with the side effects of this medication! Tingles, pins and needles, my hands and feet constantly feel like they have fallen asleep, though it has improved compared to when I first started on the medication.  Initially, my extremities had a constant vibrating sensation. I can't think of any other way to describe it, now I only get the sensation when I move certain ways or if I'm extremely tired or cold which is certainly an improvement.

I just got a reminder on my Facebook feed.. 2 years ago today, I was recovering from my most recent surgery.  I had just had my second shunt placed, so I have come a long way in that regards. 

October 2014 - Shunt placement incision

I haven't been making as many cakes lately, I just haven't had the energy of course, I have been dealing with the seasonal back to school cold and sinus stuff which seems worse than normal this year, and I find they just don't get eaten when I do make them, though I will be doing some baking this coming week, Rachel turns 7 next week, and our niece will be a year old! Will post them up when done :) 

Speaking of Rachel, her riding lessons have continued and she is making huge improvements! She is off the lunge line and riding around the arena at a trot with ease, sometimes with a little more courage than we are entirely comfortable seeing!

Rachel trotting during her lesson 

I have started going back in for regular massage appointments! Just a little shout out here to Massage Addict in Brantford! I go in once a month for a massage to help ease the tension in my neck and back created from the vision and neck and does it help!! I've been sharing my story with my therapist and word of my blog is getting out there.

Just a reminder for anyone who is checking this blog out for the first time to be sure to go back to the beginning and read from the first post.

Hobby wise, I've gotten back into playing the Sims to kill time. Currently, I've been checking out The Sims 4.  It gets mixed reviews, but I don't have too many complaints so far.  If anyone is interested, I've been blogging my game (one reason I haven't had as much activity here I guess) My Sims 4 Blog and have been creating some walkthroughs and keeping my web skills up a little.