This is a rendition of the HLA-B27 gene (human leukocyte antigen) that plays a role in AS.
(Thanks to http://www.landesbioscience.com/curie/chapter/3967/ for the pic.)
Today the ASAP: Ankylosing Spondylitis Awareness Project asked fellow AS patients to contemplate two seemingly easy questions.
1) What it the worst thing about having AS?
2) What is something good about having AS?
At first thought, the first one is very easy to answer. The second question is darn near impossible to answer without giving such downer replies as, “At least it’s not cancer,” or “It’s better than having a leg amputated.” It’s made me think about that possibility of there being some good coming out of this. But I’ll tackle the easy question first.
The worst thing about having ankylosing spondylitis is that it has taken away my ability to be the dependable person I used to be. It has made the once very predictable and dependable me not know from day to day what I physically can handle or not handle. The unpredictability is hard for me to come to terms with. Before AS, if I said I was going to do something, I did it, come hell or high water. Now, I always have to caveat any activity/responsibility with, “If my body is up to it.” Some days are good and I wake up and am ready to tackle the world. Other days I wake up, can barely get out of bed due to stiffness, pain, fever and fatigue and consider it a productive day if I can get the kids to school and back.
Now, if they had asked what are the five worst things about having AS, I’d have written about pain, fatigue and fever, the crazy amount of medicines it takes to live with it, people not understanding at all about the disease and how nervous it makes me that the boys will have it as well. But, for your sake, I’ll stick to the original questions!
Something good that has come of me having AS is I have really learned to appreciate the good days and things that I used to take for granted. Walking without pain is something to be appreciative of!
Overall, I would not choose this systemic autoimmune disease for myself (or anyone), but these are the cards I’ve been dealt and the only thing I can be in control of is my attitude. So, I’m thankful that I’m learning to live in my new “normal” and know that I can choose to be miserable or choose to deal with it. Today, I choose to deal with it.