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.

The Beam

Nimbleback, the creators of The Beam (a Canadian company) is our biggest sponsor of Fight the Fusion.
We are so grateful to have a sponsor dedicated to yoga, exercise, and spine health.

Nimbleback will be donating a Beam for one lucky winner during that week, but they have also agreed to donate a portion of Beams bought for Fight the Fusion week.

The Beam itself has been a part of my practice for the last few years since I purchased one at the Power of Movement fundraiser. With my inflamed shoulder blades and SI joints, the Beam helps relax those tight muscles around my joints and helps to give me a little extra mobility. If I am feeling more hunched over or more rigid, I will often lie on the Beam for 5-10 minutes.
I am excited to purchase a second Beam - their newest option of a softer/gentler foam - during Fight the Fusion week.

If you want to know more about their products, their mission, and the various benefits of using this product, check out their video on youtube.

Don't forget: Fight the Fusion week runs from April 27 - May 4!

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.

Being Dramatic

I was diagnosed with Ankylosing Spondylitis in 2013. Around eight months earlier is when I first started experiencing symptoms.
My hips were in pain, my shoulder blades felt like they were grinding metal on metal, and I was having more and more of a tough time playing volleyball. I was experiencing a severe increase in back spasms and a general reduction in my ability to be active.
So I started seeing a chiropractor on a regular basis. I saw an acupuncturist and had her do that as well as cupping. My muscles were in constant contraction and my hips were out of place, so I started wearing an SI belt. I began physiotherapy as well.
I was trying my hardest to get things sorted out and wound up averaging approximately 10 appointments per week, many early in the morning before I went to work.

After several months of this regimen, I knew it was something bigger. I eventually saw a rheumatologist who thought it might be a type of arthritis.

So, when I was at work one day, wearing my SI belt and limping badly, someone asked me what the doctors think that it is.
I explained that it was possible I developed some sort of arthritic condition.
My colleagues stated that I was being dramatic. They said that there was no way I had arthritis, that I was exaggerating and that I was too young. I was being a drama queen.

I can see where they were coming from.
Young girl, mid-twenties, highly active (volleyball, softball, gym) who all-of-a sudden develops joint pain and says it might be arthritis? Even I would be skeptical.

They were right. I did not have generic arthritis. I had something worse. I developed an autoimmune arthritis - a spondyloarthropy. (This is not to be confused with osteoarthritis or rheumatoid arthritis - which can be even more severe). Instead of the pain coming from bone on bone friction and experiencing pain and swelling (which is incredibly painful on its own), I was experiencing the effects of my body battling its own joints.
My own immune system is attacking my own joints - causing pain, swelling, inflammation, but also breaking down the joint matter and causing lesions and erosions. Then, my defense system kicks in and starts rebuilding that matter in the wrong places. So instead of rebuilding my joint, it builds a 'wall' in between my bones and joints - fusing them together.
A vicious cycle of inflammation and erosion, following by reinforcing defense systems where they should not be placed.

I have been fortunate with the slow progression of the disease. So far the erosion is in my SI joints, I either have herniated or degenerated discs, and my upper spine has begun to curl inward, creating a permanent hunch (that no amount of yoga can reverse - but there is no harm in trying).

There are so many civil wars in my body that it is difficult to understand what all of my systems are doing. All this internal fighting creates constant pain. Constant pain. So much so that the combination of the new disease with Crohn's Disease, severe pelvic pain, the Hereditary Angioedema that was found shortly after the AS, Hashimoto's, tachycardia, migraines, and the general fatigue, lack of energy, and ridiculous recuperation times, all took me out of the workforce (begrudgingly).

Fight the Fusion Week 2019

Did you know that there are over 100 different types of Arthritis and related diseases?
Did you know that many of these illnesses are not considered to be ailments of the elderly and that approximately 60% of Canadians with arthritis are between the ages of 15-60?

Fight the Fusion Week is going to be a week long campaign to raise awareness and raise funds for Arthritis Research Canada.

This is a social media campaign and will run from April 27, 2019 - May 4, 2019 in honour of Ankylosing Spondylitis awareness month in May.

To participate there will be a few steps to make during that week (with full rules being listed closer to the date):

1. Share a photo of yourself practicing yoga or another activity that engages the spine while using the hashtag #FightTheFusion.

2. Follow the sponsor accounts on Instagram.

3. Share share share.

4. Make a minimum of a $10.00 donation to Arthritis Research Canada.

We encourage everyone to share their stories and their experience with arthritic and spondyloarthropic conditions, to promote low-impact activities to help fight fusion within the spine and SI joints, and to share various coping mechanisms and help create a community.
Once the week is over, those participants who have made the necessary donation will be put into a draw to win a prize.
(We currently already have one sponsor who is offering a prize valued around $75.00).

Our goal is to help spread awareness for these debilitating illnesses and raise funds for much-needed research to find new treatments and new hope for a cure.

The illnesses we will be putting a face to Ankylosing Spondylitis, Psoriatic Arthritis, Osteoarthritis, Rheumatoid Arthritis, and so many more.

Fight the Fusion

Out of every disease that I suffer from, two of the most terrifying for me are Hereditary Angioedema (HAE) and Ankylosing Spondylitis (AS).

While HAE can be considered to have less of a progressive future, AS is one of those diseases that you do not want to see ahead of time what the future may hold.
This particular spondyloarthropy causes inflammation, erosion, and fusion mainly within the SI Joints and spine. It can affect other regions and in severe cases can fuse the ribs together - which can cause severe organ complications. It is often diagnosed in young adulthood and can progress very quickly.
With any chronic illness, there are infinite variations and differing experiences, but the overall progression is similar. Inflammation - Erosion - Fusion - potential surgery.
So that is why we have to do everything in our power to slow down this frightening process.

The complication of also having HAE is that many of the medications used to slow down AS is contraindicated; the Biologic medications tend to exacerbate HAE symptoms. When HAE attacks consist of throat swelling and obstructed breathing, these medications are not safe.

This fact is another reason why I have been practicing yoga so much more in recent months. Staying active as much as possible has been shown to potentially help slow down fusion in the spine. So, although I cannot be active every single day, nor can I be active for more than ten minutes or so at a time, I will Fight the Fusion by being committed to stretching and strengthening my body.

Along with this blog, I chronicle much of my battle with chronic illness on other platforms.
Click the link to follow my Instagram page and join me in my commitment to Fight the Fusion!!
Share your stories and videos, DM my page if you would like to be featured, and help give a voice and awareness for all of us suffering with Ankylosing Spondylitis, with chronic illness, with inflammatory illnesses, who are doing what they can, whenever they can, to maintain an active lifestyle in some capacity.

Ask Me Anything - AS Diet

During my latest 'Ask Me Anything' post, someone asked me what the best diet for Ankylosing Spondylitis would be.

This is a complicated question.
The biggest problem with diets of any type is that they are not universal. Each person will have varying reactions and symptoms with what they eat.

Because Ankylosing Spondylitis is a disease riddled with inflammation, the general agreed-upon diet is one that cuts out known inflammatory foods.
Here is a link to the Anti-Inflammatory Diet for quick reference. It gives a comprehensive list of foods that are supposed to reduce inflammation and foods that have been known to cause or increase inflammation.

But does it work?

There are mixed reviews.
Very mixed reviews.

Here are some things to remember:
1. No two bodies are the exact same. No two bodies will react to foods in entirely the same way.
2. Food sensitivities - for whatever reason - can change. In the same way that allergies can develop or change.
3. Go with whatever works for you.

The best way to find out whether or not a food bothers you is to cut your diet down to an extremely restrictive one. Bland anti-inflammation foods. Just a few. Follow that for a few weeks or even a few months, then slowly re-introduce foods one at a time. Then you can really see if it causes a problem or not.

For me personally, foods that are extra acidic, like tomatoes, and certain nightshades like peppers are foods that tend to cause problems in my system. While I don't cut them out 100%, I no longer eat these foods on a daily basis and I actively avoid them in most situations. Too much sugar may cause issues, as well as processed meats and white bread. Switching from white and wheat bread to rye bread actually made quite a big difference. I also avoid alcohol most of the time and only have dairy once in a while. At a party I'll indulge in a cheese tray, for instance, and I'll have a hot chocolate with real milk, but most of the time I stick with coconut milk or soy milk.

There is no tried-and-true diet for AS, unfortunately. Not in my experience at least. My personal situation is complicated by other illnesses like Crohn's Disease and Macular Degeneration that require specific dietary changes as well that often do not go hand-in-hand.

My advice:
Try eliminating most things from your diet, then reintroduce foods that could be beneficial and even foods that are thought to create inflammation. If you notice anything becoming worse, try avoiding that food for a while, then try again. If it becomes a pattern, then it will be clear what you can and cannot eat on a regular basis.
I am a firm believer in going all out with something for a while, but then not limiting yourself 100% of the time. How can a diet become an entire lifestyle change if you never allow yourself any cravings?
Plus, in my experience again, giving into cravings is often what solidifies a suspicion on a certain problematic food. (Like if I have been craving caprese salad and decide to go nuts with it one night, then feel horrendous the next day, it's a pretty clear sign that tomatoes and cheese are not exactly good choices for me).

Start with a list of foods and try each one. You'll be able to tell which ones are problematic.
And if ALL food seems to cause an issue, then you are likely in a major flare-up. So eat what you want. ;)