If you saw me in December 2014, then you’d know that I had been battling an autoimmune flare since mid-July. December and January were my worst months, although the month of July also ranks right up there for being completely miserable.
The doctors weren’t sure how to bring my inflammation levels down, and I was acting as a guinea pig while they tested out the right combination of drugs to bring my system back into a state of normalcy. (Well, normal for me. Believe me, it’s not anywhere close to normal normal.)
The only problem, though, was that I had a massive reaction to the new drugs that I started taking. By December, I was a mess. I couldn’t walk for more than 10-15 minutes at a time, I was battling severe pain which resulted in severe depression and anxiety, I was experiencing really scary heart issues, and I was basically relegated to living in bed or on the couch. Stairs were out of the question, cooking was next to impossible; the pain was so bad I couldn’t even read. And I love reading! The only thing I could fathom getting my brain around were easy beach reads. Brain fog is a very real symptom of AS, and I suffer from it badly when I get really sick.
For those of you who are wondering what could possibly be wrong with me, I have Ankylosing Spondylitis, Fibromyalgia, and Chronic Fatigue – all invisible autoimmune diseases that don’t affect my appearance, but that severely affect my body, mobility, and my mental state of being.
My body is constantly under attack – from itself. Whereas normal people have immune systems that identify foreign invaders and attack to stave off infection, my body is essentially attacking itself and tricking itself into thinking it’s sick, even though it’s not.
It’s exhausting. It’s painful. It’s completely and utterly overwhelming to live life this way.
I seem to be heading towards good health again, though. Over the past month, I’ve worked my way up steadily to 30 minutes of walking each day in preparation for the Walk Your A.S. Off (WYASO) Walk-a-thon 2015. This is especially important to me because I am working hard to get my health back so I can log as many steps as possible when April arrives.
So this is me, y’all. I took this photo yesterday in our neighborhood river park in Taiwan. I’ve worked my way up to 30 minutes of walking per day. That might not seem like a lot to you, but for someone like me, whose inflammation levels and energy levels were so bad for the better part of 2014, this is an amazing accomplishment, and I am always proud of anything I achieve health wise.
There is nothing harder than dealing with this disease and having it rob you of your well being, mobility and good health and then have to build it all up again when it’s done with you.
I was in fantastic shape this time last year, and that all went away when the disease came back in July.
I’m gearing up to walk again this year to raise awareness for people suffering from any form of spondylitis in the Walk Your A.S. Off 2015 Walk-a-Thon. And I’m looking for walkers.
Reach on to discover what this walking campaign is all about.
Our Primary Goals for the Walk Your A.S. Off (WYASO) Walk-a-Thon are:
1. Support people living with a form of Spondylitis
2. Increase the level of awareness and knowledge by the general public about Spondylitis and the family of diseases.
3. Use our walk to help our partner charities raise money for research for a cure!
4. Become more active by focusing on increasing the amount of walking you do.
Hey walkers! Join The Walking Spondies in the Walk Your A.S. Off 2015 Walk-a-Thon!
Last year, I was Team Captain of The Walking Spondies, which is a group of family and friends from all over the world that chose to walk with me and log their steps to raise awareness for spondylitis. This is a really easy way to show support and raise awareness for those of us who have autoimmune arthritis, while also reaping the health benefits of walking for yourself!
Our WYASO Walk-a-thon this year is a bit different from last year’s walk. Last year, we simply logged our step count each day for two months, but we found it difficult to track steps. After all, we all lead busy lives, and recording your step count each day and then submitting your total step count for the week for eight weeks proved to be too much for many of us. I totally get it, I really do!
This year, we have made the walk more manageable with the intention of finding more people to participate and raise awareness.
Here is how we are going to organize the 2015 Walk Your A.S. Walkathon!
1. Our official walk will be held in May. Training and recruiting begins in April. Any steps that you take in April or May can be recorded and submitted to our final step count with teams around the world.
2. You can sign up for 1 week or 5 weeks or any number of weeks that you think you can manage. This allows everyone more flexibility and less commitment. Remember, the goal is to spread awareness for Ankylosing Spondylitis. We’re not looking for donations, but we are looking for participants who will share their step count at least once and tag their status updates with #AnkylosingSpondylitis #moveitorfuseit #WalkYourASOff.
Our goal is to get the word out.
Speaking from experience, there are millions of us suffering from Ankylosing Spondylitis, but because this disease is so hard to diagnose, it also means that there are lots of medical professionals out there who don’t know what AS is or they don’t know how to treat AS.
3. We are walking toward The Million Step Challenge, which can be undertaken anytime during the year but will have a set of specific requirements to competing in and completing the challenge. There will be levels of completion based on how many days the challenge is conducted over and whether people are using an internet tracking/verifying device. The ultimate challenge will be a charity event with a fee for registration and prizes for completion and dollars raised.
4. Starting on April 1st, steps can be submitted at any time year round by a team captain or registered walker.
Registration for teams opens on March 1st. Please let me know if you’d like to join The Walking Spondies this year. We are on the lookout for new teammates, and we are hoping that the good folks who participated last year will sign up for at least a week of walking in 2015.
So what are you waiting for? If you’d like to join in and help me raise awareness for Spondylitis, please email me at firstname.lastname@example.org. This is an event that you’ll benefit from too. There is no better way to start or end the day with a nice long walk.