Volleyball ?

Okay - some of THE best news! 

I have been able to play a tiiiiiiny bit of volleyball! 

If you know me (or have been following along with this blog), you'll know that Volleyball and Music were my first loves. You'd be hard-pressed to find a more genuine connection to an activity. When I was young, my life-long goal was to play professional volleyball - and I was offered multiple opportunities to pursue that dream, but my health complications had other plans. 

As an adult I joined more than a few volleyball leagues - some recreational, some very competitive. From 2004-2012 I would play on various teams. At the height of my playing, I would be on 2 or 3 teams full-time and then subbing for up to 10 different teams - I would spend approximately 15-20 hours per week on the court. 

Then, in 2012, everything changed. It's when I developed Ankylosing Spondylitis. I tried simply reducing the amount of volleyball I was playing, but it was no use. Within the first year of that diagnosis, volleyball was virtually impossible. That's when I focused more on light stretching and yoga: less impact and much slower. Over the next years I would be using a cane, then a wheelchair, on various pain medications, and severely struggling to even walk. 

But then I was weaned off of pain medication and my physician sent me to get Radio-Frequency Ablation in 2020. Essentially, the nerves in my SI joints and lower spine are burned so that I can't feel as much pain. Suddenly, I found myself being able to walk a bit better. I wasn't limping from the pain because I couldn't feel it where I normally felt it! (I should mention here that the disease is still there and active, but I simply can't feel the damage). What this has allowed me to do is increase my levels of activity - slowly. 

The ablation procedure was a success, so I got it redone in 2021 and 2022. During those years (before the nerves grew back), I was able to do some joint and muscle strengthening. I built up some strength, a little bit of stamina, and kept my body moving as much as possible. 

Now, after a volleyball hiatus of ten years, including two years of re-building a bit of strength, I wanted to see how my body would respond to getting back out on that court. I have only substituted twice so far, and I am extremely rusty, but I was able to hold my own for the most part. I am pleased to note that all of my instincts are still there - the muscle memory is real. Everything else needs a bit of work, and after the first night I was extremely ill and in a lot of pain everywhere, but the second time I took it more easily and conserved a lot of energy for a better outcome. 

At this point, it's looking like I might be able to play now and then - as long as the ablation continues to work. It may not be as competitive, and I have definitely lost a ton of strength and stamina, but I can play a little bit!! 

I truly thought that part of my life was over and done with - especially the years I was having to use the wheelchair for the most basic outings. Being able to dust off my ankle braces, court shoes, and volleyball shorts is a happiness I can't really describe. I feel as though I have gotten some of my identity back! I feel a little more like myself - and damn does it feel good! 

Skipping Out on Bloodwork

My energy has been pretty depleted as of late, so I am able to do less and less during the day before my body decides it's enough. 

Sometimes I push straight through anyways, but for the most part I have had to rest. This means that our youngest pup has been a bit bored and acting out. I don't blame him. I feel awful about it. He still gets tons of play time in the house and cuddles and hasn't had to stay in his kennel through the night in weeks, but he has been bored, which is our fault. 

Today I woke up with a medium level of energy. What I mean by that is that I can do one fairly big activity. One thing today that depletes my energy further, and then the remainder of the day will be spent resting. 

Technically, I should have gone to get bloodwork done. I have a few appointments next week and updated bloodwork would be nice. Not mandated, but nice. BUT I felt far more guilty about our pups, so I decided to take them for a short walk instead. 

I couldn't do both activities, so I chose the one that would make my heart happier. 

Plus, I still have the opportunity to potentially get bloodwork done on Tuesday, so that's the tentative plan. 

So I played hooky on bloodwork to hang out with my dogs and ensure they are well-exercised and played-out today. 

I think I made the right choice. 

Sponsored Sundays: Necky & Stohlquist

Today's #SponsoredSundays post is brought to you by Necky Kayaks and Stohlquist Canada.

When I got my first kayak in high school, I had no idea how much kayaking would mean to me later in life.
After so much illness and so many uncontrollable changes to my physicality and mobility, kayaking has become an activity I cherish.
My blue Necky kayak is a vessel to solace. Although I cannot brave rivers, nor can I paddle for long stretches of time, my days out on a quiet lake always end up being my favourite kind of days (especially if I happen to see a bald eagle and a bunch of hawks or pelicans while I am out).
My Stohlquist Cruiser life vest (newly purchased this year) is the perfect safety feature.
The mesh backing and high-placed floatation allows me to sit back comfortably in my kayak, the various straps offer full size customization, and it even leaves proper room for 'the girls'. (It's a bigger deal than one might think). I feel safe, secure (without upsetting my so very sensitive abdomen), my arms never chafe, and it's light.

So thank you to Necky and Stohlquist (and my Dad, of course) for leading me towards one of the most beloved parts of my life and my constant battle with illness. 💙🎈

*I should mention here that I am not paid nor actually sponsored to write any of these posts. These are all my way of showing gratitude for the positive ways in which specific people and/or products/companies have influenced my life*

I believe that it is even more crucial to take stock of what positively influences us within our struggles as it is to remember and to grieve the parts of our lives which we have lost.

The Lighter Side of: Joint Pain

With anything, there is a negative side and a positive side.

Here is a lighter side of having joint pain:

Having joint pain means that certain activities may have to be modified or even halted from the pain itself.
For me, I had to stop playing specific higher-intensity games with lots of running and high impact.
With that, it meant that I had to be open to more lower-impact activities that I had not previously been open to.
One such activity is yoga.
Now I try and practice yoga at home once a week or so for a few minutes, and continue to stretch as much as I physically can - even if it means stretching while in bed!
Learning new activities is always a plus, no matter the reason!

New Yoga Poses

It is hard to imagine that the idea of being stagnant is actually progress... in a backwards sort of way... when you have diseases that are degenerative.
Although practicing yoga is an attempt to improve my flexibility, I may never improve because my joints and bones may entirely prevent that improved mobility.
So I have to work hard to stay the same. I have to aim for increased flexibility but, simultaneously, have pride if I can stay where I currently am.

Mind boggling.

As it stands, though, I am now able to practice a couple of new types of yoga poses.
Usually, any balance pose that requires balancing from anywhere near the SI joints was out of the question. Balancing on joints that are consistently inflamed, injured, eroded... yeah that is far too painful. BUT last week, thanks to this amazing hubby of mine, I have a new tool for my yoga practice. It is a meditation pillow from Indigo. It is essentially a small, circular, thick bean bag. It is stiff enough to carry all of my weight, but soft enough to absorb the pressure.
Because of this pillow, I have actually been able to practice stable balancing poses that I could not practice before.

Further to that even, if I have to sit on the floor to play with the pups, or if I need extra cushioning when I am playing piano or eating dinner, this has provided me that comfort that I am needing.

I have been eye-ing these meditation pillows for months... but I have been reluctant to spend the money. Then, they went on sale. So my hubby bought me the pink one! Smart man. ;)
Versatile and comfortable. It is helping my floor practice so much.

Cheers to new tools that help me meditate, practice, and feel comfortable while doing so.

Mountain Equipment Co-Op

Today I took my dad to MEC for a daddy-daughter day.
I love this place, but it was always so out of the way. Now there is a new location much closer to where I live, so it is just a hop, skip, and a jump to get there.
I hadn't been there in a long time, so I was really excited to go.
The only issue is that I cannot walk that large of a store just with my cane. I would need my wheelchair.

You would think having to be in a wheelchair in a store like that would be a little unnerving. At first I felt a little odd, even knowing that I am no paralyzed. But as I started rolling around the store, I realized how much I still belong in a place like that. Sure there are many sections that I have no reason to look in, like the skiing section, mountain climbing, or running sections.
However, there are several sections in which I continue to belong. The kayaking section, the cycling section (even though I have a simple one-speed and can only bike about a block), the yoga section, and especially the camping section.
I may not be able to get around as well, but I am still as active as I can possibly be. Being able to go camping, practice yoga, go biking every once in a while, and go kayaking is such a blessing. Over the years I want to INCREASE the amount of time I spend in these activities. I want to kayak a lot more, continue practicing yoga, camp more again, take the dogs out for little trail walks, and spend lots of time outdoors.
I can't WAIT for Spring so that the dogs can go swimming and I can start taking more drives out to the mountains.

It's gonna be a good year!
Being in MEC today just sparked my active instincts.

Remembering the Mountaintop

I used to do quite a bit of hiking when I was younger.
Nothing major.
Just little hikes. Smaller mountains.
I once did a 14km hike up a bigger trail when I was horrendously ill - and was so proud of what I had accomplished - but I stuck mostly with smaller trails.
Ones with incredible views of lakes, towns, or waterfalls.
I flourished in that mountain air, eating GORP at the top and watching the chipmunks run around.

I loved every single moment. Even the tougher moments when I though I might pass out.

I never really thought about what would happen if I couldn't really hike anymore. I always thought I would hike several times every summer until I was over 80 years old.
I mean, I don't KNOW that I can't manage a hike. I know that my hips cannot handle a walk of a block... and that stairs are difficult... but I think if I really put my mind to it and convinced myself it would be worth the eventual hospital trip and several weeks to recuperate, I could do it.
Just like our wedding day.
I was terrified that I would not even make it to our reception. Hell I was terrified I would not be able to physically handle the ceremony - and it was difficult but SO worth it.
So maybe a mountain (a small trail) would be possible. It would take out at least 2 months for recuperation... but I already have several walking sticks. I could take my injections up there with me should I require them. We could bring tents and a sleeping bag if I couldn't make it down from sheer exhaustion.
Maybe I could manage a little hike. After building up to it.
Maybe.

Or maybe my hiking days are entirely behind me. Maybe they are back there where my volleyball and softball days are. Where my running days and my ability to walk for hours and hours all day are.

I wonder if I would have done anything different though, on those mountaintops that I cherished so much. Would I have taken twice as many photos? Would I have stayed at the top longer and really take in that view more?
I don't think so. I think I took in every single breath that I could - breathing in every single moment.
All I hope is that I remember that feeling.
If I can never manage a hike like I used to, I want to remember exactly how it felt to sit on the top of a mountain and just exist there, feeling accomplished and exhilarated and grateful to experience something so beautiful.

Man I need to get back out into the mountains. Even if I cannot hike, the drive alone would do me some good!

New Years Resolutions

New Years Resolutions

I don't know about any of you, but I still enjoy writing a list of resolutions.

Well, they're not exactly resolutions per se. They are more like promises: promises to myself most of all.

While my health still continues to slowly decline, I have had much fewer emergency situations over the last year. This wonderfully exciting year.

So my health resolution is to continue as I have been doing. Continue with medications that seem to help keep my illnesses and flare-ups more predictable, continue with treatments and activities that help me build strength and keep me moving without the resulting ER visit. I will continue to advocate for myself and others and to spread awareness and information about illnesses and treatments, as well as try to slow the spread of misinformation and judgement.

My own personal resolution will be to continue finding new things and projects that I enjoy. To always continue to learn, and to listen to my body when it is telling me that I have taken on too much. I will remind myself that I should not feel guilty for oh so many things that I have no reason to feel guilty for in the first place. I will continue to try and do things by-the-book and do my best to feed my curiosity. I will put myself out there artistically regardless of fear or apprehension.

I will try to keep active. I will remind myself daily about how lucky I am. I will spend time meditating and reflecting. I will do my best to ignore those who are disrespectful. I will stand up for my friends and my family should they encounter judgement.

Honestly - my 'resolutions' are all about being grateful and doing my best.
Above all - most importantly - I will try to remain positive as much as possible and be grateful for all that I have experienced and will experience in the future, whether it be blessings or challenges.

❤

Good Yoga or Bad Yoga

On some days, practicing yoga makes me feel better.
It releases muscle tension, it opens up the joints, gets the adrenaline going, helps me feel active and accomplished, and helps strength and flexibility.

On other days, practicing yoga makes me feel worse.
It depletes energy, it puts strain on muscles, it puts pressure on inflamed joints (inflaming them further), it's exhausting, and it can increase my heartrate above what my body can handle.

Here's the problem: I don't really know when it will be helpful and when it will be harmful.
But just because yoga can sometimes be harmful, that doesn't mean that I should eliminate it entirely from my life. It means that I need to listen to my body and learn to recognize the signs of over-exertion or when my body is responding poorly.

It's important to remember that chronic illness has a complete mind of its own. Just like a human being, it may react well to something one day, then bite your head off for the exact same thing another day. Even if you find an exact routine or diet that seems to help, unless you are lucky enough to experience remission, flare-ups can occur out of nowhere. All we can do is try our best, try and live a HAPPY life and as healthy as we can, and hope that we experience more good days than bad days every week.
Take it day by day. Learn to be in tune with your body. And don't despair when even 'healthy' activities wear you down. Don't get down on yourself when others can't seem to understand that chronic illness is an entire being - impossible to be 100% controlled, no matter how hard we try.
Sometimes we need to remind people that we are fighting for a better life every single day, and that we wake up every day completely oblivious to how we are going to feel each day.

Keep fighting. It's worth it.

Old Tricks

Growing up as a decent athlete means that I still have tricks and muscle memory for things that are much more difficult to learn as an adult.
I found out recently that the below yoga pose can be quite difficult.
To be honest, I didn't even realize this WAS a yoga pose.
These shoulder stands were something I learned when I was really young and going to gymnastics. It has always been something I randomly move into - on the floor, watching tv, on the bed - basically whenever I have an inkling to do something easy and yet a little active (engaging my core). Even more than that, being able to fold my legs over my head and get my knees to the floor has always just been a fun challenge. I never thought it was a legitimate yoga pose.

So apparently, the muscle memory from my athletic days and my commitment to trying to stay relatively flexible with some strength has allowed for me to surprisingly learn pretty difficult poses.
Because to me they are just old gymnastics tricks.

The only piece of advice I have for people doing these poses (that I failed to realize until it was too late), it would be smarter to do shoulder stands on a yoga mat sitting on carpet. Due to the hard floors, I feel a little bruised from those shoulder stands.
I am just happy that I can practice yoga again - I had taken a pretty long hiatus.
I am a little worried that once the cortisone wears off (especially if they reduce or remove me off of medication) the pain might be off the charts and take me out of practicing yoga again.

But we'll cross that bridge when we get there.

One Great Day

Yesterday was a pretty great day. Not just in everyday life stuff, but in regards to my SI Joint pain. Yesterday the pain was lessened.
While it might seem counterproductive, I wanted to take full advantage of these rare moments. I did not even need my cane for a couple of hours while we were out!! That's pretty huge. I didn't have to lean on Rj, I didn't have to rely on a cane - I felt more normal yesterday.
So I tried a few new things, I was active, and we went to a wedding reception. (By the time we were headed to the reception I obviously needed my cane).

But Rj thought of a few things too. When we got into the reception space, he brought in my wheelchair cushion to sit on so that I wasn't sitting directly on a plastic chair. The space was very quaint, so nothing was a far walk. But best of all - I did not need as many extra medication to handle the night.

Pain doesn't have to disappear to have a great day. Any day with a little less pain somewhere in the body is a positive thing. Any day I wake up with a little less nausea, a little less pain, a milder headache, fewer intestinal cramps, or reduced swelling, is a better day.

The only problem is that, even though I know that what I did yesterday I won't be able to do again for months or even years, I want to try and be more active. I want to go again today and do a little more. It makes me miss the days when I was active every single day in multiple aspects.
No. Today I am lying in bed. Today my pain has heightened way past my usual 'normal'. I'm sore and I have been in tears a few times.
But the biggest question is always: "was it worth it?".
100% it was worth it. I will deal with the fallout for one pretty great day.

So today I plan on watching my Seahawks play the Rams, I plan on watching movies, I already paid my respects to the brave soldiers who fought for our freedom, and I don't plan on really doing anything productive.

P90x Stretch

Stretching, activity, and staying in shape as much as possible has always been a priority.
Anything athletic became a complete love affair for me.
Each time my body added another limitation, I shifted into another athletic activity. Whenever my body says "no", I usually push it for a while until I realize that it's a hard "no". My response?
'Fine. I'll do this instead'
The list of activities I've tried is super lengthy. The list of activities my body has kiboshed is now, unfortunately, very lengthy as well. The point though, is to always find something else that I can do. If you just keep the list of activities you have tried longer than the list of activities you cannot engage in, you're winning. If you can still do one activity - no matter how small - you are winning. Flexing your toes while lying in bed. Lifting your arms and leaning to the side while sitting in a wheelchair. Hell, flexing your facial muscles by smiling - that is a win!

Rj wanted to start working with the P90x dvds. He has done it before and had some great success, so he has decided to start up again. Tonight he was going to do the stretching sequence, so I decided to join him.
While I couldn't do everything, and I did flare up my right shoulder blade pretty badly from a surprisingly tough stretch, it was really nice to do a little extra stretching with Rj.

This is something I am hoping to join him in whenever possible. Just that little bit of extra activity - whenever I possibly can.
Keep going.
Keep trying.

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.

Arcade

Okay so I am not a 'gamer'. We had an original Nintendo when I was around 4 or 5 years old, so I played Duck Hunt and Mario Bros. When I was older and babysitting, we would play Mario Kart or Mario Party.
That's about it.
When I was in University, I maybe played the Wii a total of 6x. It has just never been something that was especially important. I always enjoyed myself, by all means, but it was never something I felt like I had to participate in.

Over the weekend, a friend of mine had his birthday party at a massive arcade facility (one where adults can walk around with their alcoholic drinks if they would like)! It was totally cool. It had a huge variety of video games, carnival games, air hockey, modified beer pong, oversized Mario Kart consoles, first-person shooter games, even a climbing wall and a section for VR shooting games.
I felt like a kid.
We had a lot of fun!!
There was even a 'rollercoaster' ride game, where the seats moved and tilted and you got knocked around and you had fans blowing on you simulating the wind.

It was a perfect place for someone like me.

In my usual style, I pushed too hard, tried too hard, and stayed too long, which means I am STILL suffering today from it, but I also had a ton of fun. The mini basketball game was awesome because I stood in one spot and shot the ball in a small setting. Same with the football game. And ski-ball. And 'beer' pong (minus the beer).
I was still incredibly sore afterwards, but it was really nice to play these games and get this tiny little taste of the athletic life I used to lead. (Too bad there was no volleyball game - at least not that I saw).

It was a great night out that was relatively inexpensive, included a ton of laughs, and made me feel completely nostalgic.

I think it is important to find places like this and activities that are condensed like this to feel like you are out and enjoying yourself without actually risking your health in a dangerous way.
This place, along with my kayaking, camping, and playing pool or darts, as well as playing piano and singing, are all activities that I can still participate in once a month or so. The sessions might be few and far between, but at least I have options!!
This arcade might be my new top place during the Winter months...
Now that it is Springtime, kayaking will be my focus. And riding my little one-speed bicycle.

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.