Macular Degeneration Progression

With a slow-moving disease, like my Macular Degeneration, I find it fascinating to take note of its progression. Call it a morbid scientific curiosity.

Over the past few months, I have been noticing more of a significant change in the way that I see while using one eye. Luckily, for me, using both eyes does not yet show any sign of deterioration from 20/20 vision, as confirmed by my ophthalmologist, (as long as I wear glasses or contacts for my near-sightedness and astigmatism of course). However, when one eye or the other is covered, I am noticing more changes in my central vision. 

I wanted to demonstrate those changes somehow.

This next set of photos is what each eye sees when looking at typed words. When looking at this phrase with both eyes, there is nothing amiss. In these examples, I am at a distance of approximately two feet from the page, with the font (Calibri) at 36pt, and looking at the centre of each word (not each letter separately). I used white-out to show what I see with my separate eyes: 

To test the progression of AMD, an Amsler Grid is usually used, shown below: 

The Amsler Grid will bend, deviate, and even include disappearing parts with progressing AMD, until the grid is unrecognizable or the centre of the grid is greyed out. The photo below is an example of how my left eye (the worse of the two) sees the very centre of the Amsler Grid, looking directly at the dot in the centre: 

I wanted to demonstrate my personal progression in terms of reading - because that is where I have noticed it the most. Parts of letters will be missing or will be so bent to one side or another that, while reading with one eye, I will mistake letters for others. 

I am lucky that my progression has been slow. 

I was diagnosed when I was 21 years old - with much confusion on the part of my specialists. My scans have been perused by no less than 6 ophthalmologists to ensure the diagnosis is correct, however odd it may be. 

Until the past three years, though, I had not noticed any unexpected vision changes. Then I began noticing very minor issues - like tiny little grey spots polka-dotting a clear blue sky. 

More recently is when the bending and line-deviations started. 

Here are hand-written examples of how I see text and vertical lines with each eye: 

Notice the slight deviations, bends, and even some missing portions of the hand-written text. 

Notice the deviations and even a slight break in the lines. In my left eye, the greyed out blind-spot is just to the upper right of my centre, whereas the blind-spot in my right eye is to the lower left side of my centre. 

Now is the perfect time for me to document my own subjective experience with this disease. Since my collective vision is 20/20, it is very clear to me where the deviations and breaks are within my vision with each eye. 

If you are also a morbidly curious person, feel free to follow along in my sight-loss. Fingers crossed that my central vision will stay mostly intact for decades. I guess we will have to see (ha ha). 

*There is no current medication for the treatment of Dry Macular Degeneration. I am taking Vitalux and consuming fish oils through my diet on a regular basis, as this has been shown to potentially slow its progression.* 

Boredom

Okay we all know how boredom can feel - not sure what to do, but when someone suggests something, nothing feels interesting. You go over all of the possibilities, and usually there are 20 different chores that could be done, but you still can't find something you can really get into.
So you read one chapter... maybe lay down to have a nap (only to realize it is only your mind that's so exhausted), and walk around aimlessly, looking for inspiration or something.
Nothing is really on tv - even your favourite show or movie isn't managing to pique your interest.. Except for all of the things you cannot do.

For instance, I am craving going for a run. I mean a good, long, fast, run. Earbuds in, headband covering my ears, shorts and a tank, listening to the most upbeat station I can find.
Or attend a steamy sweaty hot yoga class.
Or go swimming for 3 hours.

My hips will not allow me to run.
Too much heat makes me vomit. (Plus it's not like I have been able to get through an entire yoga class for years anyhow)...
And I did my Cosentyx last night -> the last thing I need is to expose myself to anything I have allergies to, or do anything too exciting, or I'll be having a severe throat swell.
Even going for a short walk seems unattainable at the moment because of how much pain my SI joints are giving me at the moment.
Perhaps I will try a 5 minute treadmill stint and see how that goes.

Everyone experiences boredom... or that feeling of dissatisfaction even though you are keeping busy. Boredom can be even more unrelentingly agitating when your body prevents you from participating in many activities.
I'm sure in an hour or so, I will come up with something.
For now I will sulk on the couch watching a third rate flick while I am doing some laundry.

Unexpected Gift

In the interest of trying to save a little money here and there, I recently joined an online auction site. These auctions sell everything from clothing and shoes to household goods, books, power tools, and furniture. Most of the items have very low starting bids and some items don't get bid on at all.
Well, I have been following the site for a month or so now, just watching and checking out items put up for auction, but this is the first week I bid on anything.
This lady was auctioning off a collection of books. She, evidently, has nearly the same taste in reading that I do!! Not only did she have The Other Boleyn Girl with the original artwork cover (which I have been trying to find for ages), but she also has other books about The Tudors, Henry the VIII, and the Boleyns. Then she had a bunch of stories by Stephen King, some of the Harry Potter franchise, and even a couple of Game of Thrones books. 
My loot included 19 books.
Two of them I have read, one when I was a child and The Other Boleyn Girl.
I paid $21.00 total for these books.
Normally, at a books store, this would have reached over $200 for sure.

Furthermore, owning pre-owned books comes with its own little surprises and little gifts.
I quickly flipped through one of the novels and found some makeshift bookmarks. One was a ticket stub, one was a business card, and one was an appointment card for Canadian Blood Services thanking the person listed for making a donation back in 2014.

So - without listing names - I want to thank people for parting with books that will be loved and maybe eventually passed on to another who will love them. I want to thank that specific individual for donating her blood to help those who need blood products. In addition, I want to thank these people who participate in these auctions. It is a much more financially efficient way to purchase some new-to-me items.

I am super excited to get reading!!

Iconic Poetry

I have recently cracked open this particular collection of poems, written by Tyler Knott Gregson, called "Chasers of the light: poems from the typewriter series".

It is just inexplicably relevant. When I purchased this particular book, I was simply grabbing random collections of poems. When I found out that these poems were put together from pieces he wrote on an old typewriter, I thought that it was unique and interesting.
What I came to find out is that his whole mantra in this collection is finding the bright side of situations. "The Lighter Side" if you will. Some of the moments are tragic and emotional, but there is always something that brings a light element, however miniscule.

I want to share two of my favourite pieces, because they are absolutely perfect and had me in tears, but also smiling. Tragic and hard-hitting and a reminder to always look for the better in everything.

"Find the positivity. Find the grace. Find it and hold it and cling to it like it is your lifeline and only breath of air before everything sinks. Find the silver linings. Hold them in your lungs and search for them in the bubbles and rubble of all that pours down around you. Find the bright spot in the dark clouds, listen for the sounds of birds when the winds pick up and tear down the house around you. It is there, shhh, it is there, it is always there and it is waiting for you to reach out with both hands, bloody and shaking, and hold tight to it like it is the last thing you will ever learn how to let go. Find the glory, the glory through the ache, and understand that it is what we can endure that defines who we become. It has never been about the punches we can throw, but the punches we can absorb and still stand up from. It is the standing up, it has always been the standing up and the refusal to lie still and quiet as the numbers count towards ten and the knockout becomes complete.
Rise my soul, rise through the flame and the ash, rise through the waters that fill the spaces under your arms as they crawl toward your throat. Rise and find the grace, for it is all around you.
Find it. Find the grace."

Here is the second (more devastating):

"Now I Lay Me Down To Sleep

Be gentle, always delicate with every soul you meet, for every single morning you wake up, there is someone Wishing, silently and secretly, that they had not."

From an utterly random find to a new love. I love his poetry. I love the ways he can turn a phrase. I love how, just when you think it is sounding all cliché, he adds in a term or an unexpected visual that reaches through right into your soul. He takes the depths of human emotion and presents it on a page - tangible, real - and you realize that your deepest and most vulnerable thoughts are mirrored by someone who you have never even met.

This is the kind of writing I can only hope to one day present. He has such a gift and I am so grateful for having experienced it.
It reminds me that looking for The Lighter Side of Medicine; that Chasing the Light, is not a fool's errand, but essential to our personal survival, and something that great writers have written about. It gives me added motivation to continue the path I have set out with something as simple as this blog. It may never go anywhere, but somewhere out there, it might just reach someone in a way that I could never have predicted.
💚

'We choose to see miracles'

Whenever I read a book, I always take time to write down quotes from the book that really speak to me.
I finished reading The Nightingale last night (which is a brilliantly devastating and captivating book, btw). I wrote down several quotes, but this one got me:

" 'You have been through so much.'
  'We all have.'
  'So we choose to see miracles.' "

I won't give away any spoilers as to the specific miracle they were referring to, but I loved the quote.
It can be applied to any difficult situation - and seeing the silver lining, no matter how large or small.

With illness, sometimes the 'miracle' that i choose to see is as simple as eating a meal that wasn't just Boost. Sometimes the miracle is being able to do the stairs. Or walk in heels for an evening. Or being able to forego my cane for a few days!

Horrible things happen to everyone in some form or another. If we do not actively look for the bright side or the miracle in it, we may never find it. There is often this perception that miracles have to be these gigantic displays that are visible to anyone who happens to be looking in that direction or that they are obvious - but I don't believe that. I believe that all of the little tiny good things that happen to us are the miracles - because they add up to something monumental, if we can just choose to see them.

Be on the look out for little miracles today.
Random acts of kindness alone can seem like mini miracles to someone.

Springtime Excitement

6Well - even though there is still a lot of snow on the ground - I can feeeeeeel Spring weather coming.
Of course, a big weather change usually includes a big flare-up of at least one of my illnesses, and some clusters of migraines, but it also includes some anticipation for activities I can still manage. I may feel ill 100% of the time, I may have pain 100% of the time, and illness might put a damper on every one of these activities, but I am just as excited despite knowing that illness will pervade every moment.

I am excited to go for drives out to the mountains to go for a walk or let Decker swim in the lake.
I am excited to go camping and spend nights beside a campfire under the stars, surrounded by the sweet smell of pine trees and the sound of creek water.
I am excited to bring my bike down from the roof of the garage (okay RJ will be the one getting it down for me).
I am excited to take out my rollerblades from storage and see if I can manage that activity.
I am excited to take out Decker's floating water toys for him to fetch.
I am excited to swim in a lake.
I am excited to go for a kayak.
I am excited to have bonfires in the backyard and barbequed anything.
I am super excited to plant and take care of our garden, to enjoy fresh flowers all the time, to taste freshly grown produce from our own backyard.
I am excited to bring my yoga mat outside.
I am excited to attend the weddings of frienda.
I am excited for more of our own wedding planning, for more sunshine, for more time spent outside, for iced herbal teas and reading on the deck.

There is so much to look forward to.

Borrowed Descriptions

I often spend time thinking about how to describe the various ways that I feel. The procedures, the appointments, the contradictory emotions, and what it feels like to parts of your body failing - or feel like they are failing or malfunctioning in some way. (My still favourite description is that I am a Lemon - a decent paint job but with parts that don't quite work properly on the inside).

Today I have been preoccupied with reading The Handmaid's Tale by Margaret Atwood and I have come across some very intuitive descriptions and I wanted to share one I read tonight:

"I can't think of myself, my body, sometimes, without seeing the skeleton: how I must appear to an electron. A cradle of life, made of bones; and within, hazards, warped proteins, bad crystals jagged as glass."

That very last line, following the semicolon (pun intended), is what caught my attention.
Poisoned.
Hazardous.
"Warped proteins"
Missing links.
Misdirected cells.
Living with a semi-colon.

All very poetic.