This week's episode is based upon an email from Cookie about Walk Your AS Off. This a fun way for you to help spread awareness of Axial Spondyloarthritis.
Here is the text from Cookie's February 9th email:
Today I joined Walk Your AS Off! I miss being a part of something. I miss working towards a goal, hell who am I kidding I miss being inspired to even have a goal!
I have wanted to participate for a long time, but life and I got in the way. Plus, I didn’t have it in me to be committed to anything or anyone and I damn sure didn’t want to let my team or anyone down.
I mean honestly how much of a difference would my 1000 plus steps a month make? Well? A lot to be honest not only to myself but to my team and to the goal of reaching Mars. One step at a time, all of us working together.
You see I have spent most my life missing out because I didn’t think I would do it perfectly or I would be an embarrassment or let people down especially myself. I am never going to run a marathon or hell even crawl one. But I can be a part of something and enjoy being involved and excited about goals being met! No matter how big or small they maybe, they still matter. My only goal at this moment is just to remember to keep up with my steps and hopefully I will be able to make the goals of going one step further each day.
What I love most about Walk Your AS Off is that for one it is free! Who doesn’t love “free!” I am not pressured to donate any money or time unless I want to. I can join or stop at any time!
I love the fact that I have NO GOAL TO SET OR MAKE! I love the fact that I am the only one who is setting the goal for myself and that no one knows that goal but me! I am under no obligation I can do it if I want to or not! I don’t have to be a walker, runner or in any certain type of shape. I just got to be ME! And I can do that! AND the greatest thing is getting to meet new people and hopefully make lasting friendships! I know I have.
I think it is about 2000 steps to make a mile. I figured with any luck I will manage that in one week! Heck maybe even 2023 steps! I have always been a goal maker, which set me up for failure or not even giving myself a chance to try. Because I wanted to be perfect or the best at everything I did. I missed out on a lot. Ankylosing Spondylitis has taken a lot away from me, more than you will ever know but one thing I have gained with this disease is learning to have compassion for myself. I try to remind myself my best is my best. Period. It may not look like anyone else’s best or what others think it should look like, but I know I am doing the best that I can and that is enough for me.
So, today I begin tracking my steps! I am really curious to see what they are, to be honest I am excited about doing this. I joined The Blue Apple team because I do not have it in me to be a team captain plus I wanted to be a part of a team, a community. Working together to encourage each other and reassure each other that our best is our best and together we can do this!
I was dreading signing up because I struggle with technology, but it was SO SIMPLE!!!!!!!!!!!! My username is Cookie! Original right! Oh, and I asked if my family could use ONE EMAIL and ONE username to give me their steps because they do not want to have to remember to log in and do it. AND THEY CAN! So, I have a few members who are going to text me every Sunday (I think) their steps and then I will add them to the site. (Damn almost sounds like a team captain)
I hope you will consider joining us in making our goal to Mars and raising awareness! Thank you for your time. I would love to publicly thank Jenna Dye Visscher for her vision and her determination to create such a wonderful community and project for all of us. Please check out the link below!
Hope to see you soon!
All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.
Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/
Here are some links to Amazon showing some of the items I have discussed.
Uberlube - https://amzn.to/3i604N2
Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg
Biofreeze - https://amzn.to/33gygBS
Cane - https://amzn.to/3uN9fts
Heating Pad - https://amzn.to/3Bjd5vz
Weighted Blanket - https://amzn.to/36RCdi7
Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA
All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx