Thursday, May 28, 2015

{So what is Ankylosing Spondylitis (AS) anyway?}

Almost anytime I mention having arthritis, I hear "Really? You're way too young to have arthritis...". This is because of the confusion with osteoarthritis/degenerative arthritis. Initially, I was very defensive and wanted to yell at them to make them understand. But... Flies to honey... I've realized it's easier to explain it than to get in a huff about it. 

Let's start with the easy stuff... Osteoarthritis is considered to be the most common form of arthritis. It occurs when the protective cartilage on the ends of your bones wears down over time (you know, as you get old) (per Mayo Clinic).

Then, there's what I have going on - Ankylosing Spondylitis. Ankylosing Spondylitis (AS) is an inflammatory arthritis. The tricky part is that AS is also an autoimmune disease. Auto immune diseases cause our bodies to "attack" themselves. In AS, the joints in the spine are the target of the autoimmune attack, resulting in significant stiffness and pain in the back. As the disease progresses, it can cause new bone to formation and fusion of the spine, eventually creating a forward stooped position.  

Ankylosing Spondylitis is a chronic disease, meaning that it cannot be cured. While AS manifests itself differently for every person, most people will have times where the disease is particularly active (often called "flares"). There are also some folks that are lucky enough to have long period of time where the disease is "inactive" or they have very few symptoms. Every person that suffers with an autoimmune condition seeks the day they are in remission. It's the best way to avoid further destruction of their body.

I was diagnosed with undifferentiated spondyloarthropathy after college. This diagnosis came after first experiencing significant pain issues that began when I was 11/12 years old. The years after that initial diagnosis were filled with my acting as though nothing were wrong and not doing anything about my health. In 2009, I was diagnosed with AS, by Dr. Hadler at UNC-Chapel Hill. At that time, I was motivated to do something, but still not ready to try medication interventions. I tried every diet program, nutritional supplement, exercise, therapy – you name it, I did it. I’d get some temporary relief from the pain. Nothing lasted.

By the time late 2013 rolled around, I was desperate. I began experiencing a flare on Saturday, December 14 - it was a flare like no other. For a week or so, I was in constant pain and it was becoming apparent to those around me. Jason knew there was something really wrong when I willingly contacted our primary care doctor. I nearly begged for a referral to a rheumatologist because I knew it was time to put my health ahead of my not wanting to take medication. I met the rheumatologist just after Christmas. After x-rays and an MRI, we went with the "big guns" for treatment and I started Enbrel the next week. 

Since that time, I have had ups-n-downs, changed doctors, switched biologics, and made other significant changes in my life to benefit my health. While I may have some mild fusion, I am doing everything in my power to prevent more. I am fueling my body with the best nutrition possible; I am training at CrossFit (modifying as necessary given how I feel each day), and keeping an open mind. I've also had the opportunity to advocate on behalf of myself and others that need the assistance of biologics (and, hopefully soon, biosimilars).  

I am stronger than Ankylosing Spondylitis. The journey may not be perfect, but I am going to win. 

Thursday, May 21, 2015

{This little light...}

Did that make you start singing? You know the song I'm talking about from childhood Sunday school, Vacation Bible School, etc. 
This little light of mine,
I’m gonna let it shine.
This little light of mine,
I’m gonna let it shine.

Let it shine, let it shine, let it shine
You're signing now, aren't you? You're welcome :-) Want all the words so you can sing it in your head all day? Here ya go... Now back to where I  was going with this...

It has been entirely too long since I have written a blog post. Looking back, it looks like it's been over a year and a half! There's been a lot of activity, positive and negative, and it's all finally heading in the right direction. 

Long story, kinda short... 
Since December 2013, I have been on a roller-coaster (pain from AS; loss of my job at NCLM; new job with Avison Young, etc.). A "flare" of my autoimmune arthritis (ankylosing spondylitis) began in mid/late 2013 that wouldn't go away, no matter what I tried; I imagine part of this stemmed from the stress of my potential job loss. I finally got a referral to a new rheumatologist (hadn't seen one since ~2009) and sought answers and relief. Over the last year plus, we have tried several pain medications and biologics in hopes of helping me overcome. 

During the last year and a half, I have also been broken - mentally and physically. I would venture to say that no friend or family member, my husband included, knew how broken I really felt. I have always been good at hiding the issues associated with AS and I wasn't going to let anyone see me as weak.  

Several months ago, I reached my absolute breaking point. I was sick and tired of being broken; I had lost hope. I knew there had to be a better way. I wanted to change my health; I wanted to feel good; I wanted me back; I wanted what everyone else had and I knew it was possible with the right tools and mindset. 

I reached out to a friend about a nutritional rebalancing and cellular cleansing program she had mentioned on Facebook. I had done a fair amount of research before I reached out to her, but needed validation. Once I talked with Renee about her being free of her Crohns symptoms, I was beyond ready.  

I started following the program the first week in April. Since then, I have had significant changes in my life. I feel confident in saying that I am no longer broken. I am no longer without hope. I am happy. I am (nearly) free of all symptoms associated with AS. The changes I have made have brought back my light and I cannot keep from sharing it. I am excited to see what the future holds for me. I am looking forward to advocating more about health, educating people on AS and other autoimmune arthritis conditions, and continuing to be the best me possible. 

This is just the beginning.

Sunday, August 4, 2013

{14 miles...}

In May, Suzanne and I joined the Raleigh Galloway program to help us get back into a consistent run schedule. We also knew that having the large group, and our pace group, would help hold us accountable when the other may be out of town. The runs have gone very well thus far. Several weeks ago, I ran my first double-digit run since May or June of last year.

After joining Raleigh Galloway, we started tossing back 'n forth the idea of running a full marathon. We're signed up for the half that's part of the Richmond Marathon and could easily upgrade to the full marathon before September 30. We reviewed the calendar to see when that would be on the Galloway training calendar. Once we realized it was doable, we decided that we would make the decision on the full after the August 31 18-miler.

Yesterday's run was supposed to be 12-miles. Since Suz was at the beach and I wanted to stick with people I knew, I decided to do 14-miles, the furthest I've ever run in my life (and probably not a good idea to jump like that!). 

The Galloway group met at a the Inside-Out Sports store on Creedmoor Road to head toward the Lake Lynn area. When I saw the run was at Lake Lynn, I should have known it could be a really crappy run. While the Capital Area Greenway system is great, Lake Lynn just isn't my cup of tea. There are lots of places where the path is tilted in toward the lake significantly, especially if you are running clockwise around the lake. 

The run was a monster for sure, but I survived. As soon as Rose, Monica and I were done, I immediately got in the car - not the best idea. My right leg started feeling like it was seizing up/cramping. On the drive home, I texted Suz and told her I didn't think my body was going to let me do a full, all the while crying because I knew I could do it and I want to do it. I also texted Jason to let him know I was on the way home and to lament the feeling of "failure" of the long run. He assured me that it was gonna be alright. Who knew that 14-miles could be so mentally and physically testing?! 

I was so very grateful to see Jason waiting at the front door when I got home. He hugged me and reassured me that I could do it. He held me while I cried the biggest alligator tears from the feeling of failure. Once I got my "mess" together, he reminded me that this was the furthest I had run and that I had said the running area wasn't idea, etc. He "talked me off the ledge" of skipping out on running the Richmond Marathon. 

Once I had my shower and fountain Coke (evidently I stopped at McDonald's on the way home to get a fountain coke - I don't remember!), I was in a bit better mood. I put on my Raleigh CrossFit "Stay in the Fight" t-shirt as a reminder of how far I've been and where I'm going. That's what the coaches would tell us - stay with it. 

Looking forward to the rest of this journey toward completing Richmond!