Doing life with AS can be hard

In my last post I talked about my girls and featured the youngest and her struggles as well as success as she's grown into a beautiful young woman.  Today, I'm excited to say my oldest is engaged to a wonderful man (whom we love).  She has an exciting new job as the Marketing coordinator for Key West Aloe.  It's exciting to see how both of my girls are blossoming into young women!! 

Planning a wedding with AS is "challenging" at best.  We have a LOT to do over the next year as we prepare for that special day.  When I occasionally wake up throwing up and have no advance notice that this will happen, or have a major flare, it does make me wonder and pray for none of that to happen on days that are "wedding stuff days"!  Then I'm quickly reminded that I have no control over AS, but I know who does and pray for Him to take care of it!  I place my AS in God's hands!

My last 6 weeks have been exhausting and stressful.  I've watched my oldest get engaged and move 7 hours away, started wedding planning, watched my grandmother die, and moved my youngest 4 hours away to college.  Needless to say, it's been a LOT!  My AS has been in a major uproar letting me know that I may have used all my spoons for the next year in those 6 weeks.  OK--if you're lost on using my spoons, there's a blog on that one!  Look in the past blogs. 

Life with AS is not easy.  We don't just get sore and tired...we live sore and tired all the time, 24 hours a day, 7 days a week.  This is not just a pain that comes when you do a bit too much.  This is a pain that most folks can't even begin to handle!!!  See we're used to it.  Our 10 pain level is your 100!!  We don't just have "arthritis".  We have an autoimmune disease that has NO CURE. 

For me, these last 6 weeks have not only been filled with heartache pain, but more physical pain because of the things that I've been doing.  Most folks do these type things and never miss a beat, for me...each one takes all my strength.  See I am a face of ankylosing spondylitis.  I may look fine on the outside, but inside, my body is screaming.  But, this AS Face...will not give in!  So, I've booked a chapel, hotels, and reception venue, designed, ordered and mailed engagement party invites, packed up and moved my oldest to her new town, watched my grandmother pass and help with her funeral, packed up and moved my youngest to college...all with AS.  Am I paying the price?  You bet!  Is it all worth it?  I wouldn't have it any other way!

AS has my body, but not me!

                                             Usual spot for my monthly remicade infusion


  1. Your blog always makes me feel better and not so alone! Thanks for sharing, you do a great job documenting your journey with this dreadful disease. All the best to you!

    1. Thanks Tiffany and my best to you as well.


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