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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November 09, 2017


I have been really bad at updating!

There isn't a whole lot happening on the IIH front. Headaches are still happening on a daily basis, not much improvement there. I did get approval for Botox, but I'm not too optimistic to be honest. Botox apparently is great for Migraine treatment. IIH headaches result from the spinal fluid creating internal pressure changes, so I'm not positive injections on the exterior surface of the skull will have an effect on the headaches overall, but, I'll give it a try. My next round of injections are scheduled for after the new year, so we'll see how things go :)

In other news, Rachel had an amazing summer! I'm sorry this post is more horses and Rachel than it is IIH but that is just more interesting at the present time, especially when there isn't much new happening with my head lately, and honestly, this is what keeps me going. Spending time with the horses is relaxing and just seems to take my mind off the headache and pain.

She placed 7th over all in her first show season!

7th Place Ribbon
We learned a lot this summer while functioning on minimal sleep and lots of coffee. Rachel accomplished a lot in her riding, she's even started jumping!

Overly dramatic pony!

I even learned how to create a quarter sheet! I made a pony sized sheet for Patch for Canada Day. From the concept drawing to final product. I think it turned out pretty good for a first time! 

First Concept Drawing

2nd Concept

Closeup of Concept

Dress maker Dummy for a pony :)

Work in progress

Completed quarter sheet

Trial run

Canada Day Pony! 

Rachel and Patch in action

4th x2 7th 8th

Individual Canter

August Show
4th 5th x2 6th

Rachel on 5 O'clock Somewhere (aka Sadie)
Patch was not available for the October show

Rachel and Patch have started pulling off the matching faces!



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