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.
Sarah:)
Thank you, Sarah, for commenting on my blog! When I clicked on your profile I wondered how anyone can manage more than one blog, is this your main one? I'm sorry to read of your trials with AS. I don't ever want to assume I know what someone is going through, but two years ago I had a very adverse reaction to an antibiotic I took. For over a year it was challenging to walk...anywhere or do anything that was repetitive. I too, never knew what my body was going to be able to do on any day. I had some very difficult months. Today, I consider myself lucky to have only lingering side effects. It could be so much worse. Photography is a good hobby isn't it? It helped me get through some of the rough days. I'm anxious to grab a cup of coffee and look at your photos...the ones I saw were beautiful! Again, thanks for taking the time to say hello!
ReplyDeleteReally poignantly said, and timely for me. I live with arthritis, and have grappled with these questions for the past 4 years. Some days photography is the only thing that gets me through.
ReplyDeleteAnd PS- Your photos are beautiful. I really enjoy them.
Hi, I'm not sure about you not being good with words, yours seem to pretty much sum up my feelings too.
ReplyDeleteWould you mind if i post it on my facebook wall?
Keep well and best wishes
neil.
Thank you Anita and Jen!
ReplyDeleteHi Neil! I clicked on your profile but couldn't see it. Feel free to post on FB. Are you part of ASAP?
Just catching up with your posts.
ReplyDeleteJust wanted to remind you how far you've come in the last year. I know half the battle was just finding the answers. Finding a doctor who confirmed it wasn't all in your head. Knowing that you have people who appreciate all that you do and remind you that it's ok to just say "no" or "I can't today".
I know that even when you are having a bad day, you still consider your glass half full and give your boys 100%. This blog testifies to that on a daily basis. Keep smilin'!! Amy
Your attitude and faith is something you should be very proud of. You are an inspiration. I just wish I could make it all go away and take it myself. You make a mom proud! I love you. Mom
ReplyDeleteI have psoriatic arthritis and if that weren't enough, I got the ankylosing spondylitis that comes with it in some cases. I also hate having to depend on people to help me do things I should be able to easily in spite of my 71 years on Earth. My neck is fused so driving is something I must make some compensations for. I haven't had an accident in over 30 years so if you learn to live with your limitations you can get by. Still I would be afraid to attempt a trip across the USA in a car by myself. I also don't like using a walker, which I use when I have to go a long distance on foot.
ReplyDeleteFunny that people should mention photography - AS hasn't stopped me there and I have been taking pictures since 1959 [see:
www.flickr.com/photos/tbr18
If I didn't have a great health plan I would realy be shafted. My monthly cost for drugs for this is $2.300 most of which goes for Enbrel. I used to take five Vikes a day for pain but when Enbrel came along I went to no pain almost over night.
So I hate looking like Quasimodo but as several people have already noted there are worse things you can be forced to deal with. You can adjust to almost anything, and that includes AS. Rest assured if there turns out to be a miracle cure for my fused neck, I will sign up immediately :-)