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.
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.
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.
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.
Thanks for your information. Please accept my comments to still connect with your blog. And we can exchange backlinks if you need. What Is Ankylosing Spondylitis?
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