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! 

Post RFA Yoga Session

I'm still pretty sore but managed a short outdoor yoga session this morning. What a beautiful day!! 

RFA #3

My radio-frequency ablation is finished for another year!! 

My recovery this year has been much better than the last two years. AND they only ablated three spots this year! They did my left side on Nov. 7th and they did my right side yesterday, Nov. 21st. 

This year I asked the nurse if she could snap a couple of photos as they were doing the burn portion of the procedure - just to see what it looked like. 

The blue cloth on my neck is a cold cloth to help prevent me from vomiting. 

Fight The Fusion 2022

This year's Fight The Fusion has, again, been very lowkey. I can't entirely blame the pandemic.... so let's just say that life has been a little more hectic (not necessarily a bad thing). 

This year consisted of a variety of Daily Challenge yoga poses and stretches - many of which help to stretch out the various muscles and joints commonly affected by conditions like Ankylosing Spondylitis. 

I encourage you to donate to Arthritis Research Canada, as I will be doing again, and if you are posting about your experiences with Arthritis, or posting your daily challenges, please tag me. 

Fight the Fusion 2021 DAY ONE

 Good evening! 

Welcome to DAY ONE of Fight the Fusion 2021. 

Today we are featuring one of our wonderful raffle prizes available to be won - a beautiful photo of the Northern Lights, taken right here in Alberta, by JBĀR Photography. The picture of the photo does not do it justice. It is gorgeous - it captures various colours, with the bright stars, and the landscape. 

This is one of two pictures featured as raffle prizes this year by this photographer. 

The Northern Lights

23"x17" Frame

Tonight I also shared a few yoga poses on livestream that help keep my spine and SI joints moving, mobile, and releasing some of that tension. Click here to check out the video. 

REMEMBER - all you have to do to get your name in to win one of these raffle prizes is:

1. Share a photo of you engaging in some kind of physical activity. Each day during the Fight the Fusion week is another opportunity to get your name in - up to 8 entries! It doesn't matter WHAT you do, as long as it gets you up and moving around! Make sure to use the hashtag #FightTheFusion on social media, and follow @lightersideofmedicine on Instagram. 

2. For five extra entries, follow the sponsors listed on my Fight the Fusion Instagram posts. 

3. For ten extra entries, make a donation of $15 or more to Arthritis Research Canada, either directly (and pm me a receipt) or through my KarissaDianeTunes paypall (which is a charity paypal account). All money received will go to Arthritis Research Canada at the end of the campaign. 

Enjoy yourself, learn a little bit about all the different types of arthritis, show off your active lifestyle (even if it is a simple stretch in the morning to help you get out of bed), and enter to win some fantastic prizes!

Fight the Fusion 2021

That time of year is coming up NEXT WEEK!! 

On Tuesday, April 27th, the 8 day Fight the Fusion week starts. 

Fight the Fusion is all about bringing awareness to arthritic conditions, including Ankylosing Spondylitis, Psoriatic Arthritis, Rheumatoid Arthritis, Juvenile Arthritis, Osteoarthritis, and any other arthritis related conditions. 

I will be making a donation to Arthritis Research Canada at the end of that week, but the goal of this fundraiser is awareness and engagement. 

We have raffle prizes again this year, which will be unveiled during the FTF week. 

Here's how you can win:

1. Post a photo of yourself doing something ACTIVE. It doesn't matter what activity, just anything to get your joints and your spine moving, up to one entry per day. Use the hashtag #fightthefusion on social media and tag me on Instagram, Facebook, or Twitter. If you post each day, that's 8 entries in the raffle prizes. (Only one prize per winner - even if one name is drawn multiple times). 

2. For 5 extra entries, follow me and the sponsors of Fight the Fusion on Instagram.  

3. For 10 extra entries, make a donation of $15 or more to Arthritis Research Canada. There is a donation link available on my Facebook, as well as on this blog (web version). Don't forget to leave your name and email address if you want to be entered into the raffle. 

4. Draw will happen live-stream via Twitch. 

**Prizes are only available to be won in Canada this year. This fundraiser is not affiliated with Instagram, Facebook, Twitter, Blogger, Twitch, or any other social media platform. 

Let's get moving! 

Tippy Toe Yoga

Moving into stretches on tippy toes is now part of my standard practice. When I first began trying to find the balance and core strength to hold these poses, I would fall from one side to the other and struggle to hold them for more than half a breath. 

Now, some of those early struggles have paid off with practice and the poses below are some of my favourite. 

So now I keep pushing myself to hold the poses longer, add additional elements, and push my body to increase its overall strength. 

Yoga in the Snow

There is just something about being outside when the air is crisp and the snowflakes are massive. 

It also helps when the pups want to get involved in my yoga sessions. 

SI Joint Radio Frequency Nerve Ablation

Man, that's a complicated title.

Radio Frequency Ablation in the nerve endings around my SI joint and lower spine....

Essentially, the nerve endings are burned... killed... lesioned... in hopes that it will give me some temporary relief by preventing those nerves from sending pain signals; so that my nerves and brain don't quite register the pain of the crumbling joints. 

The whole process of RFA is a difficult one. First they did two rounds of injecting numbing agents to the nerve endings they plan to burn. I won't lie - these procedures are brutally painful and the freezing only lasts a few hours. They are, however, necessary. It is to ensure that I was a candidate for the ablation. 

As with all procedures, the ablation comes with risks - and some are frightening. They have to make sure they have the right position, the right nerve endings, and that the body doesn't respond poorly. So the numbing injections have to be done... twice... before they can attempt the ablation itself. 

I am not going to tell you that the block freezing feels 'like a pinch'. It doesn't. It hurts a lot more than a pinch. If you have had Cortisone injections into your SI Joints, then that is probably the closest comparison I can make, except slightly worse because it is more than one location where they inject a needle. For me, it was four spots on either side. Eight brutal injections - some worse than others. To be very frank, I nearly vomited from the pain alone at each and every stage

. 

BUT - that sharp, nauseating, deep pain from the needle and the freezing entering the joint only lasts seconds. After a few excruciating seconds, it settles to an ache. Then, after the first round - after I had done it once and knew I could get through it - the subsequent injections were easier to handle mentally. Time did not seem to go as slowly during the second round of block freezing injections. 

Then came the actual Radio Frequency Ablation. 

This procedure is an extension of the freezing procedures. They still have to do the freezing injections before they burn the nerves - so I cannot say it is less painful. 

BUT - the amount of freezing given is quite a bit more (my back remained numb for over a week after my first ablation procedure). So when they insert the large gauge needle and thread in the electrode, it very truly does feel like pressure on the back, as opposed to pain. Obviously freezing does not permeate every spot perfectly every time, so there were moments when I felt pain, but they were few and far between. 

Then came the actual burning. Again, if I felt some pain from the burn (which did not happen every time), it was manageable. The burning 'machine' has a rhythmic beeping to it that lasts 2 minutes. 120 seconds. So the day before my first ablation procedure, I prepared several songs that are around 2 minutes long*. That way, when the doctor said the burning would start, I would begin humming or singing one of those songs in my head (or out loud) until the beeping stopped.  

It was a very important distraction and worked beautifully the first round. 

The second round (yesterday) was more painful. It seemed more complicated in that it took longer to find the correct needle placement. This meant stopping and starting, some extra freezing (which hurts the most in these procedures - for me, anyways), and testing the nerve. Essentially, testing it feels like a small electrocution that sends pain signals into the si joint, hip, and down the legs. It isn't pleasant. (It's even worse when the doctor says to 'turn up the voltage'). But it is all necessary to ensure positive results. By the last burn, I was feeling nearly desperate for it to be over. When the last burn started, I could feel quite a bit of pain, though not entirely unbearable. I had a choice whether to stop, add more freezing, then start again, OR grit my teeth and bear it for 120 seconds. I did the latter. I could not hum my songs during this, it was too painful, so I focused on rhythmically breathing in and out slowly and trying to relax as many muscles as I could. 

The most fascinating part for me was during the first burn in my left side. It was the first ablation procedure. I could not feel any pain, just some pressure in my back from the needle, but my body responded to the pain I wasn't feeling. This wasn't fun, but it was super interesting. It felt as if someone had placed a heating pad on my stomach from the inside, which resulted in some sweating and nausea, along with a 'pit in my stomach'. I felt like I might vomit, but it subsided within about 30 seconds. 

All of this is in an effort to give me a bit of pain relief from the damage my Ankylosing Spondylitis is doing to my spine and joints. It will hopefully allow me to move a bit better, walk a bit better, and feel a little less pain every day, hopefully for a year. They say it can last 6 months or longer - so I'm crossing my fingers that I will experience more of the long-term relief. Then I get to do the ablation procedures over again: IF it works. I will have to wait 3 weeks or more before the results of this procedure are even noticeable. Until then, my joints will remain achy and inflamed from the procedure itself. 

I'll update in a month whether I feel these procedures were worth it - but I remain optimistic!! 

If anyone has any questions about my experience please feel free to message me at any time. ❤❤

**

The songs I chose that seemed to fit the best with the timing of the burn included:

Sentimental Journey

Tea for Two

Bushel and a Peck

Side by Side

Chapel of Love

Glory of Love

Moon River 

What to Wear to Procedure Appointments

Picking out an 'outfit' for certain procedures may seem completely ridiculous, but there are some very compelling reasons why your procedure outfits can be attributed to comfort. 

Here are some of my outfit tips depending on the appointment/procedure: 

Dentist

Wear your hair down or in a braid. Avoid buns or ponytails. When you're lying down on your back, the last thing you need is some hard lump of a ponytail digging into your head. An outfit with socks is preferable because it gets cold in those dentist chairs. 

MRI/CT Scan/X-ray

Sports bra, leggings, and a warm top. Do not wear anything with metal. That way, sometimes they will allow you to wear your own clothing instead of having to change into a gown. Avoid jewelry and, again, wear your hair down or in a braid. 

ER Visit

If at all possible, go in sweatpants, wear socks or slippers, and bring a hoodie. This is for comfort and for appearance. Unfortunately, showing up to the ER in dress clothes, work clothes, or put-together at all when you have invisible disease will often result in 'looking too healthy to be at the ER'. It may not, but (speaking from experience), an outfit can often contribute to misunderstanding the severity of the situation. 

SI Joint Injections

These injections are brutal (whether they are Cortisone injections, nerve freezing/ablation, etc...). The last thing you want to be doing is moving around too much afterwards. In this case, wearing soft underwear and a dress are the best options. I wear my hair up in braids to keep the hair off of my face without pulling too much (and for a mask to stay nicely), with a shift dress and a sports bra. The hair is important because if it's in my face when I begin to feel nauseated, it makes it worse. With the dress, after the procedure, I don't have to get undressed and re-dressed when my back is so incredibly sore. All I do is let my dress down. That's it. No bending, no fiddling, no jean waistband or buttons, nothing tight to my skin. Comfortable. 

I also specifically wear dangly bracelets or a few rings to give me something to fiddle with so I can distract myself. (Seriously, diamonds aren't just for special occasions, sparkly jewelry helps with distracting from pain 😉). 

I am off to my second appointment of nerve freezing today, and this is my outfit: 

Nerve Freezing

Last week I had my first appointment of having my nerves frozen in my SI joints in preparation for nerve ablation. 

The preparation for the ablation is brutally painful, but necessary. In order to ensure that my body will tolerate severing the nerves, they need to test my body's response to freezing. 

Essentially, if I have some relief without a great deal of complications, then we can go forward with ablation.  

Here is how the appointment went: 

Mask on, I was prepared for a procedure similar to cortisone injections into the SI joints. I was unaware, however, that they would be injecting both sides AND injecting freezing into multiple locations. Luckily, I found this out before the procedure began. 

I had to be face-down on the table as the doctor and technician prepared my back. I wore a dress for easy access (and so that I wouldn't have to try to put pants on over the injection sites afterwards). The technician and the doctor were both very calming and as gentle as possible. Unfortunately, shoving a needle into an inflamed joint to freeze an irritated and inflamed nerve is, very obviously, going to be painful. 

I don't want to deter anyone from getting this procedure done, but I also want to be completely honest. The procedure was brutal. After the first couple of injections, I became extremely nauseated, sweaty, and felt as though I may vomit from the pain (thinking in my mind that I was about to vomit into a mask), but I was able to push through. I know that I could have asked the doctor to take a second, but I also wanted the procedure over with. 

He was extremely efficient and was very adept at trying to get me thinking about other things. 

At one point, the needle grazed the nerve, and I felt a 'funny bone' type of zing down my right leg. It was not as painful as some of the other sensations, so it acted as a kind of odd distraction. It was fascinating, so I was actually happy for that particular moment. 

All in all, the needling itself lasted no more than 15 minutes (times vary for each patient of course). So I kept focusing on my breathing - trying to breathe out heavily during each entrance of the needle - and tried my best not to flinch or tighten my buttocks too much. (I find it amazing how, if properly prepared, we can stay relatively still as someone is inflicting pain). 

Unfortunately, these freezing tests, when done without the use of Cortisone, only provide relief for approximately six hours. So it doesn't quite feel worth it. It is a means to an end, though. The relief from actual nerve ablation could last 6 months or more! 

I have one more set of freezing tests and then the nerve ablation will be scheduled. I'll let you all know if I have found it worth it once the relief from the ablation is evident (likely a few weeks after the procedure itself). 

Summary: 

Nerve freezing feels similar to Cortisone injections, with a bit more of an intense pain during the procedure and more locations. So it is a bit more painful, a longer procedure, and multiple injection sites. BUT it is also a quick procedure. Now that I have been through it once, I am more confident going into the second appointment. It will be rough, but it doesn't take long. 

Day One - Fight the Fusion 2020

Welcome to Day One of Fight the Fusion 2020.

I started Fight the Fusion last year as a fundraising and awareness campaign to bring attention to several types of Arthritis and Spondyloarthropies. This includes illnesses such as Rheumatoid Arthritis, Psoriatic Arthritis, and Ankylosing Spondylitis, all of which can affect people at any age. 

Ankylosing Spondylitis, the arthritic illness that I have been diagnosed with, is actually more common in younger adults. 

I was diagnosed at 26 years of age. 

I, personally, have a long history of autoimmune and inflammatory medical conditions, beginning at age 14 with Ulcerative Colitis. Along with IBD, I also have Hashimoto's, Hereditary Angioedema, early onset Macular Degeneration, Psoriasis, Chronic Migraines, and a few other issues. Up until the diagnosis of Ankylosing Spondylitis, I was still playing volleyball up to 18 hours a week, softball and beach volleyball in the summers, kayaking, going to the gym, as well as working a full-time day job and two or three part-time jobs. 

Of course, I still wound up in the ER about once a month and had terrible flare-ups, even consistent symptoms, but my energy was still high, my pain primarily in my intestines, and I rarely felt weak. 

Then the AS hit. Starting with severe pain in my hips and lower back, as well as my shoulder blades. I started suspecting a larger problem than simple sore joints or muscles when I had a difficult time getting up off the floor after diving for a ball. Or when I could barely serve the ball because my shoulder blades felt like they were grinding, combined with severe muscle seizing & spasms. 

It took eight months of searching to finally be diagnosed with AS - at 26 years old. 

I could not physically play volleyball anymore. 

I had to quit my evening jobs. 

I was encouraged to stop working from my day job. 

I began using a cane, then a walker. Now I use a cane most of the time and a wheelchair for longer distances (like going to a mall or trade show). 

My activities became more and more low-impact. 

Now I rely on practicing yoga, going kayaking, and light stretching and low-impact activities to try and keep my joints moving and my muscles strong, though I have lost a ton of strength. 

These diseases are no joke. 

This year, because of the Covid-19 Pandemic, I am not asking for donations to be made to Arthritis Research Canada. All I am asking is for those with any arthritic condition to share photos of themselves trying to #FightTheFusion in their daily lives. Please share photos over the next week of activities that help you overcome the pain, hobbies that help you mentally, emotionally, physically, and ways that you remain positive through difficult and painful illness. 

I, personally, will still be making a donation on behalf of Fight the Fusion, and there is a link on the web version of this page if you do wish to make a small donation, however that is not what I am asking. 

Next year we will resume with fundraising efforts and draw prizes. This year is all about awareness. 

Thank you to all Fight the Fusion participants. Use the hashtag and/or tag me on Instagram, Facebook, or Twitter and your posts could be featured on my page and potentially on this blog. 

Practicing yoga, kayaking, and constant playtime with the dogs are all ways that I Fight the Fusion: 

Working hard on my backbends, trying to keep the flexibility in my spine for as long as possible. 

Lying on the soft Beam by Nimbleback (last year's largest sponsor of this fundraiser) 

Our two puppies, Decker and Comet, enjoying some time outside. 

My favourite pose to open up the hips and help ease the pain in my SI joints. 

Fight the Fusion 2020 Update

Last year I started an annual fundraising campaign to help bring awareness to arthritic illnesses like Ankylosing Spondylitis. We had a bunch of amazing prizes, many from local vendors, and encouraged people to show how they #FightTheFusion in their daily lives and make a small donation to Arthritis Research Canada. 

While fundraising for various chronic illness organizations still remains a necessary part of healthcare research, the situation with Covid-19 has become a top priority. 

Although we have a gorgeous donated photo of the Aurora Borealis that was going to be given as a draw prize, we knew early on that this fundraiser would not look the same this year. 

So instead of campaigning for donations, we are asking that you continue to share your photos of how you Fight the Fusion AND tell a candid story about how you are handling the isolation. We are not asking for donations this year. I think 2020 will be a year where every single person struggles financially and medically. Show us how you are fighting your own medical battle with acts of kindness, uplifting stories, funny or inspiring isolation photos, and how you are staying safe during a novel crisis. Show us why being #highriskcovid19 is not all bleak and boring, but instead how much strength it takes to stay calm while being high risk. 

The donated photo will be put into next year's Fight the Fusion week draw prizes. 

Fight the Fusion week officially starts on April 27th - this year will be an awareness campaign only. We would love your participation! 

Stay safe. 

You Might Have a Chronic Illness if:

You Might Have a Chronic Illness if: 

• You were told nothing was wrong months-years before a diagnosis was confirmed

• You have ever felt disappointed when a test comes back negative

• Rumours have been spread that you fake being sick

• You have peddlers in your dm's daily trying to sell you a 'cure' (that doesn't actually exist)

• You hear 'at least you don't have _____' (which is usually true, but doesn't often help us feel better)

• You feel guilty all the time about being caught in between being too sick and being not quite sick enough 

• You make a game out of guessing what caused a flare-up

• Your pharmacist and/or ER departments know exactly who you are 

• You don't often physically *look* ill and have been punished for that fact at some point

• You often find yourself in the waiting rooms of specialists whose primary patients are elderly

• You go back and forth between 'not letting the disease control you' and 'listening to your body' at different times in your life

• You realize that "Remission" does not always mean 'symptom-free' 

• You know more about medications and adverse reactions than a first-year pharmacology student

• You have been told, at least once, that it is all in your head

Ambulatory Wheelchair

I am an ambulatory wheelchair user. 

This means that I can only walk short distances, my body tires easily and can give out, and I often need a reliable place to sit everywhere I go. 

I am lucky enough to have decent days when I can walk with a cane, rare days when I do not need a cane at all (though I still limp), and days when I require something in between, like a walker. 

I have required these walking aids since the first year of being diagnosed with Ankylosing Spondylitis. 

I am lucky because I have options. These chronically painful illnesses can be volatile, so I never really know what kind of day I am going to wake up to, but I have a pretty good idea of what aid I might need when I leave the house. 

It can be confusing. It can appear odd. It is not consistent; even though the pain itself is always there, some days are better than others. 

Just think of me as an elderly person with a limited amount of energy and a constant source of joint pain (among other serious illnesses and a long list of medications). That is, essentially, how my body behaves. Sometimes I just need to be wheeled around and have a comfortable place to sit in order to prevent severe flare-ups, as well as allow me to get out and do more. 

An ambulatory wheelchair means a bit of freedom for me. 

Yoga for Instagram

My activities over the past few years have dwindled to a few. Trust me, I am ecstatic that I can still paddle and practice yoga, but those are my main sources of exercise. 

This blog and how I share this blog has a lot to do with Instagram. On IG, though, sharing pictures is the main focus, so I share photos of me practicing yoga. 

Now, before you turn away all eye-roll-like, my yoga photos are not what you would picture on the 'gram. I do not have a professional camera, for one. What I do have is a smart-phone with a fairly impressive camera. 

I do not take photos of every single time I practice yoga. I take photos every couple of weeks, and then share one photo a day. It isn't some glamorous event... I usually fiddle with trying to find decent lighting, pick out an outfit that allows me to practice comfortably while getting some decent shots, and then propping my phone up on a book, a shelf, or on board games teetering on a shelf trying to get the best vantage point. It is all a little bit ridiculous. 

The best part, though, is the actual taking of the photos. See, my phone sits on a shelf, pointed at my yoga mat while I practice. I use a voice command to take these photos... which means that I practice yoga and randomly shout "CAPTURE" or "SMILE" when I have reached the calm moment in a pose. Of course, it doesn't work every single time, so you might hear me shout the same word over and over trying to catch a picture before I become too flustered and move out of a particular pose.... which was meant to provide some serenity. 

Which is partially contradictory... to give up the calm to try and capture a photo.... 

But that is also precisely why I never shoot video of my practice. I need those privately calm moments, without the camera. 

Yoga is for me... although when I am stressing about getting decent photos, it doesn't always feel that way. Trying to take these photos, however, does provide me with some much-needed motivation and structure. When I feel especially ill, yoga is the last thing I want to do. For instance, for the past 2 weeks, even leaving the bedroom has been a major difficulty. My energy levels and overall flare-up has had me on non-stop resting mode. Yoga can actually help me during these times if it doesn't deplete my energy to irreversible levels. Knowing that I was running out of pictures helped motivate me to practice even when I was not feeling entirely up to it. 

Alright, anyways, what's more is that I do not have this picture-perfect practice. I am not a yoga instructor. I do not attend yoga classes anymore. I practice at home. Some of the most basic poses are far too painful for my body. Even transitioning between poses is less of a 'flow' and more of a 'stop-and-start' with jerky, unbalanced, often comical movements. 

There are lots of photos I do not share - photos where I lose my balance, where I am just lying on the floor waiting for my body to allow me enough energy to continue, and even photos where I think I am perfectly in a pose but really I am not even close. 

I find this mostly when I 'think' my back is straight or even arched. Trying to get into Crescent pose is highly difficult and even painful most of the time. I still gently try - because I want to keep my spine strong and as flexible as possible - but the photos themselves show a very subpar level of practice. Downward Dog is another pose I rarely even attempt anymore because of my shoulder blade pain, but as you can see below, I am not even close to getting it right. I even went on my tippy-toes with partially bent knees in an attempt to help me straighten out my back. 

The saddest part is that I thought I had it. 

Nope. 

Still a curved spine. 

Now, logically I know that my spine curvature at the top is the progression of the disease (Ankylosing Spondylitis), but I still seem to hold out hope that I can stretch my way back to a better posture. 

I might be out to lunch. 

Yoga on Instagram often looks poised, serene, relaxed, mixed with perfect photography skills. 

Not on my page. 

My page is filled with repeating poses, attempts at halfway decent photos, and an entire array of silent moments off the screen that make up the bulk of my personal practice. 

Here are some of the misfit poses and photos that I rarely share - to show that the 'gram only shows a small fraction of what is really behind the scenes.

Yoga is supposed to be an intensely personal experience. My practice is tailored to my specific needs and level of strength and flexibility. I am always working on improving my skills without causing more pain. I have SO much I need to work on - breath, flexibility, strength, technique, meditation, etc... - but it is a practice all my very own. No matter what, that is a beautiful thing and I am happy to share my imperfect practice.  

The Lighter Side of: Using a Cane

Having difficulty with mobility is not exactly a positive thing. With deteriorating back and hips, mobility can take a big hit.
I first began using a cane when I was 26 years old. I often have a limp due to pain and muscle spasms in my back and hips, and my energy levels have dropped tremendously from my body constantly battling itself.
Using a cane was a hit to my pride, but it also opened up more opportunities. The same thing occurred when I began to need a wheelchair for certain outings.

The Lighter Side of using a cane is that you can find very pretty, sparkly, or interesting canes for all occasions and all sorts of extra little parts. You can find handcrafted wooden canes, canes specifically for ice and snow, collapsible canes that can fit in a purse, or even canes with a secret compartment for pills or other small items.
Plus, if you cannot walk very far without an aid, a cane can give you the opportunity to get out more! It is even better if you are deteriorating slowly enough that you can use a cane when you need it, but can forego the cane if you are having a better day.
In addition to all of that, when you are someone who requires a cane (especially if you are a young person), people are often a little more kind. They may ask if you need help, hold doors open for you, you might get some special treatment or some nice parking spots, and it can even spark conversation. It is not all bad to be losing mobility. That doesn't mean I'm happy about it, but there are some silver linings.

Ankylosing Spondylitis Day

How are you participating in Ankylosing Spondylitis day?

Today happens to coincide with the final day of Fight the Fusion.

Today means a great deal to me.
I have had chronic illness since I was 14 years old. With a myriad of organ complications, from the mild to severe, inflammation, autoimmunity, and constant pain were simply a part of every day life.
Even with all of that illness, though, I still pushed through and did my best to stay incredibly active, to work, and to study.

In 2010, after graduating from University, I moved from the city where I grew up, got my own apartment, and tried to settle into some kind of stable, long-term employment. I played volleyball nearly every day, went on hikes, went camping, kayaking, played softball, played beach volleyball, went running, worked a second job, and dated. I was busy.
In late 2011 - only a year later - I started noticing some pain. It seemed to begin in my shoulder blades and hips simultaneously. Volleyball became more difficult, but I pushed through, thinking it was some mild injury or strain. Throwing the softball from outfield or even infield was becoming more painful.
Then, one day, several months later, I dove to save a volleyball, and had this awful pain in my hips that made it really difficult for me to get myself back up. I just could not get up easily anymore. I was 25. Then I started having back spasms that dropped me.
I was having severe pain everywhere now, but focused in my hips, my back, and my shoulder blades. The hip pain was exacerbating my pelvic pain and everything just hit the fan.
Here's the problem: I already was diagnosed with several illnesses, so these symptoms were easy to explain away. I went to several doctors, knowing something was wrong but unable to convince anyone. During that time they found a kidney infection, an ovarian cyst, severe esophagitis, an AVM in my lung, one doctor tried to diagnose me with floating rib syndrome, and I was passed from one doctor to another.
I knew something was wrong and it was different than muscle, different than Crohn's Disease or pelvic pain or anything else I already had. This was different. This was deeper. More intense.
In Spring of 2012, my symptoms were so awful and so intrusive, that I had been in the ER, I had been taken by ambulance a couple of times, and I could barely move most of the day let alone work. I was trying to sort things out - I saw a physiotherapist 3 times a week, a chiropractor and deep tissue massage therapist twice a week, had them work my spine, my psoas muscle, and underneath my ribs and hip bones. Yes, underneath. I tried acupuncture, cupping, I used a tens machine, I used an SI belt, I tried alternative therapies and medicines, a new diet, a new routine, and went to the Chronic Pain Centre.
I was finally referred to a Rheumatologist. The appointment itself took nearly 3 hours, but within the first ten minutes he suspected Ankylosing Spondylitis.
After testing, baseline measurements, bloodwork, scans, the whole gambit, he diagnosed me with AS.
It is a type of autoimmune arthritis that begins with inflammation, then causes erosion of the joint and even bone. That results in the body producing new bone matter in an attempt to fix the erosion, but then causes fusion of the bones and joints together, further reducing mobility.

It is a vicious cycle of the body attacking its own joints, then the body trying to fix the attacked joints. It is a symptom of a mighty confused immune system.

Shortly thereafter, I was prescribed medication and biologics (which I cannot take). Then, two years later, I was also diagnosed with Hereditary Angioedema. These two major conditions impeded my ability to do a heap of things I could have done before. Suddenly, my motivation to try and get back to work dwindled. Not just because of AS and HAE, but because of AS and HAE being ADDED to IBD (Crohn's Disease), AMD, psoriasis, Raynaud's, tachycardia, severe pelvic pain, endometriosis, chronic migraines, and all of the symptoms combined. The fatigue and the consistent flare-ups and trips to emergency were just not going to allow me to continue working.

Despite all of that, I still find immense joy in my life. I am finally on a set of medications that seems to be a good fit, I am going to the ER less because I am resting 90% of the time. I cannot be even close to as active as I was before, but I do practice yoga and stretching to help my mobility - to help Fight the Fusion from spreading too quickly in my spine - and I meditate. I have a loving husband (we just got married in 2018), two beautiful puppies, and more true and genuine friends than I can count. I have a wonderful and meaningful life - full of purpose. It just is not in what some may call a conventional way.
I have limitations. I use a cane and sometimes a wheelchair - partly because of mobility and pain from AS, partly because of the immense fatigue in my muscles and body.

Overall, though, Ankylosing Spondylitis has been a curse and a blessing. I hope that the Fight the Fusion campaign will help bring some additional awareness for this disease that affects so many young individuals.

FtF Prize Pack #8

Our last (but certainly not least) prize pack comes to you from Nifty Gifts and Apparel.
This local company has donated a set of two stemless wine glasses with some of her signature design work.

The lovely individual who donated these gifts also deals with severe back pain. She has her own difficult struggles and pushes through everything to continue doing what she loves.
Creating these designs and making unique gifts for wedding parties is her focus and something that she does to help Fight the Fusion. To stay active. To keep moving, keep motivated, and her products are in high demand!
Just like all of our sponsors, the face behind Nifty Gifts and Apparel is more than just a kind and generous person. She is an inspiration.

If you want to enter to win this gorgeous prize pack (with glasses and bookmarks and some artwork), make sure to SHARE YOUR PHOTOS and use the hashtag #FightTheFusion. Then head on over to Arthritis Research Canada, make a small donation, and comment when you are done. You'll be entered into a draw to win one of these 8 prize packs!

FtF Prize Pack #7

In our 7th prize pack, we have another stunning piece by Melissa Rae Fine Arts.
She has donated  a beautiful, framed, piece of mandala dot art. It has a gorgeous movement to it and is primarily pink and grey.

This stunner, in my opinion, would go beautifully in a room meant for serenity. It has a 'spa' feel to it, a sense of calm, and with a neutral palette it could fit in just about anywhere.

Make sure to take a look at her Facebook or Instagram feeds for her amazing creations. She works with acrylic mandala dot art as a means to cope with the increasing pain from fusion in her spine. She also works with oil and pour painting mediums, has had some experience with watercolors, and has featured some striking textured pieces - like her Moon Goddess painting - and Chakra inspired art, with beautiful swirls of colour.

She Fights the Fusion in her back every single day. She is determined to help ease the pain in her back in whatever way she can. Even though activity is painful, she continues to push through to ensure she stays active. She has made difficult changes in her lifestyle and has been taking stock of exactly what she needs to do in order to improve her quality of life.

This strength, talent, and kindness is what makes her an ideal sponsor for this fundraiser. Not only does she Fight Fusion on a daily basis - with a smile - but she is also an inspiration to anyone trying to organize their lives after receiving a frightening diagnosis.
She knows, as we all do, that there is no cure for these diseases. The best that we can do is try to slow down the progression of the disease and work hard to make sure we keep as much mobility as possible. Her commitment to her health with such a positive attitude is exactly what it means to Fight the Fusion.

If you would like to help us search for better treatments, research the exact causes, strive for more effective prevention strategies, and even help find a cure, please participate in Fight the Fusion. The rules are simple: share a photo, use the hashtag #FightTheFusion, and make a $10+ donation to Arthritis Research Canada - there is a donation button on this blog (must be the web version). That's it! Then, your name is entered into a draw to win one of our fabulous EIGHT prize packs, filled with art, jewelry, wine glasses, yoga supplies, bookmarks, and/or music.

This fundraiser ends at the end of the day TOMORROW (Saturday May 4th). So get your photos and donations in before you miss out!!