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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June 29, 2015


Had the fun of picking out new frames for my glasses on Saturday.  Not an easy task to accomplish when visual field issues mean looking in the mirror doesn't give the full visual picture. Found the best way to determine the ones I liked best was to take a picture then compare them.

Option 2 was a popular look with my friends and family but ended up with the final choice that I did due to price and Robert's contributing comments.  I've had the smaller frame style for at least the past 5 years, seems odd to be going back to a larger frame but it does give a little more room for the progressive lenses which I think will be easier in the long run.

Current Frames
Option 1

Final choice

Option 2

Found this article to be interesting, so figured a little reading to go with the new glasses :) Chronic Pain and Relationships

June 27, 2015

Spreading the word

The word is starting to get out a bit about my blog.
A new blogger to our #BlogSupport network.
Posted by Chronically Awesome Bloggers on Friday, June 26, 2015

June 24, 2015

Eye Exam

Eye exam complete. I found out that I was correct, and my condition is covered for annual eye exams. Minor changes in my distance prescription and lots of changes to my near sight. Doctor is recommending I go with progressive lenses.

While they can't do much to correct vision in my right eye due to the optic nerve damage, it will certainly be nice to be able to see better than I have been, and not have to struggle to read labels etc.

June 20, 2015

Lost in Limbo?

The past few weeks have left me feeling like I've been lost in limbo, uncertainties in both eye care and neurological care seem to be raising their heads.

When I was in hospital last month, I discovered that my neuro-surgeon was on leave and a follow up was scheduled with one of the senior staff from the neurological department. My appointment was booked for June 18th at Neuroscience Ambulatory Clinic (NAC) in Hamilton.  While driving with Robert to Hamilton, I received a call advising me that the neuro-surgeon had been called into the OR and I wasn't going to be seeing him. There also appears to be some confusion about who I should actually be seeing. The doctor I was scheduled with wasn't the one who performed my most recent procedure and I should probably be examined by the one who tied off my shunt. They would get back to me with a new appointment, possibly with a different doctor. So far, I haven't had a return call on that one.

I booked an eye exam for the 23rd. It has been 2 years since my last one, and I know I need new glasses. Currently, I can either watch TV or look at my monitor, I have to wear my glasses for the TV and I have to remove them to see my computer screen.  I think I'm getting to the bifocal stage.  I actually got a call back from the eye doctor telling me that my last appointment was July 2013, and technically I couldn't see her until next month.

I did a bit of research and from what I can see, in Ontario, there are certain eye conditions that allow for annual eye exams, covered by the provincial health plan. From my personal experience, I fall under the 4th paragraph, under 65 with visual field defects. I provided the optometrist with my neuro-ophthalmologist information to confirm the Visual Field Test results for the past 3 years. Currently I am waiting on a return call from the optometrist to confirm that I do qualify for yearly exams under the OHIP program.

Eye Care Services Covered (Ontario)
People 65 years and older and those younger than 20, are covered by OHIP for a routine eye examination provided by either an optometrist or physician once every 12 months plus any follow-up assessments that may be required.
Specified ophthalmology services for patients of any age with specified medical conditions or diseases affecting the eyes are insured.
Insured persons aged 20 to 64 years with specified medical conditions affecting the eye can receive an OHIP insured regular eye examination once every 12 months.
Insured persons aged 20 to 64 with any of the following conditions can go directly to their optometrist or physician to receive an OHIP insured eye examination: diabetes mellitus, glaucoma, cataract, retinal disease, amblyopia, visual field defects, corneal disease, strabismus, recurrent uveitis or optic pathway disease.
Insured persons aged 20 to 64 who have certain medical conditions not listed above may also be covered for regular eye examinations. They should discuss this with their primary health care provider.

June 12th marked a day of progress for Rachel. We took her for her riding lessons and noticed the horse that she normally has her lessons on was already being ridden and the other 2 were not in sight. Well, Krystal accused me of squealing, but when they took Rachel to the paddock to get her horse for the lesson, she came back to the barn leading Patch! I will admit I have been waiting for this day. Patch is an adorable little guy with a big attitude. I can't say for sure if he is a pony or a miniature horse, I know there are differences but I don't know enough to state which he is. He does have the attitude of a full size horse though. I have seen him challenging the bigger and older horses in the paddocks, and showing that he is the boss.  He does require more direction from Rachel than the earlier horses she has ridden, but they wouldn't have put her on him for her lesson if she wasn't ready. 

Rachel on Patch

Talking of being ready and growing up too fast! Wednesday, June 17, 2015 marked Rachel's graduation from senior kindergarten! Where has the time gone? It's so hard to believe that she is already entering the primary grades at school.

Rachel - September 2013
First day of JK

Mummy Rachel and Daddy
SK Graduation 2015

June 03, 2015

Neurological and Immune System connection?

Just found a very interesting article regarding the connection between the brain and the immune system.  Could become very relevant to my particular case considering the autoimmune disorder - pachymeningitis and the neurological conditions with IIH.
"We believe that for every neurological disease that has an immune component to it, these vessels may play a major role.”  
Scientists Find Vessels That Connect Immune System And Brain

June 01, 2015

Sharing this publicly available event

Prednisone and Dental Issues

More fun! I get to experience yet another issue with long term prednisone usage!
It's a great medication, it's supposed to help with so many different things, but sometimes I have to wonder if it's truly worth it!

I was out grocery shopping yesterday, something I haven't done as much as I should. I tend to let Rob take care of the groceries, especially if I'm having a bad day. While we were out I was feeling the typical low blood sugar issues so picked up a chocolate bar to split with Rachel. Just a simple bar, no nuts, nougat, not sticky, just the typical soft bar similar to a Mars or 3 Musketeers.  Take a bite and I started thinking right away that somehow nuts had gotten into the bar during manufacture. Nope, turns out it's a chunk out of one of my molars.  I think that puts the count up to about 3 teeth  now starting to crumble and break.

I did some searching and apparently it is a common issue among long term prednisone users. Prednisone causes calcium absorption issues and the teeth need calcium to maintain health.  There are a number of other drugs that can cause dental issues.  A short list (not inclusive) of those can be found at Medication and Dental Issues.  

The fun part for me, ever since I was little, I have had an innate fear of the dentist! I had a bad experience once, and that was it for me. I brush regularly, I go to the dentist when it is absolutely necessary..aka pain to the point of intolerance, but if I can avoid that trip I will ... every time!