Ankylosing spondylitis wife, mom, and grandmom!

I've been asked to join a group of bloggers who all have our "mystery" disease called ankylosing spondylitis (AS). Why the mystery?? Well, YOU can't see it--but can you??? If you look close enough, I think you can. So, I'm writing on being a patient advocate today. I started my blog because of AS. I do want people to know how it not only effects me, but my entire family. I had NEVER heard of such a disease, but yet there are over 2.4 million with spondylitis. How have we never heard of it? Why have I always thought when I see that stooped over older person they didn't do what their mom told them and stand up straight. Mmmm, maybe they have spondylitis?! What does it mean for me to be an advocate for AS? I feel it's important for me talk about AS (blog about it). To tell those how it's my entire families disease. To educate myself and others. To inform folks that if you truly look--I mean look--it's not invisible. --yes, it's a "form" ...

My husbands company changed insurance companies--now before I go any further, let me first say that I'm thankful for my insurance and that my hubby's work provides!--BUT, for those of you with a chronic, incurable disease--when you hear the words "new insurance" you might as well cuss us out! When hearing we were getting new insurance there was the on-line check of ALL my providers and my families. YAY great news...they are all IN NETWORK. No more worries and I don't even think about it again. Go to my rheumy--sign in--hand new insurance card and get told, I'll have to check this. After sitting there a few minutes someone (a new face to me) says, "you're out of network, we don't accept that insurance". For those of you who like your Dr and who have an incurable disease can understand my reaction--I started crying! YEP, crying! She takes me to her office---and hands me a box of tissues. I've driven an hour to the appointment. I need to be ...

So last blog I informed you of a feeling that has popped in my mind a time or two about how I wish "people" would just understand or at least try. For those that read....pretty much seems we ALL (all us ASers) feel the same. I only had one person that didn't agree--how'd that happen?! Only 1! Wondering what the blog was about...it's still there so just read on! And yes, I still feel the same way. And glad I wrote it. Which leads me to believe that we all need to speak out! We need to say what we're feeling and we need sooo much for "people" to get educated on what ankylosing spondylitis (AS) truly is! And NOT feel sorry for us. I still wish folks would stop with the little comments--but, I do know they are just trying. I also, know that those that ask how I am and those that are praying for me daily--I'm thankful for all of you! So with that the spondylitis.org (plug there) organization asked us to submit videos...those of us with AS know that wo...