Loving being a grandmom and still hating AS!

Those of us living with this horrific disease would love to be able to say.....I’M CURED!  Instead we just keep on “doing life” the best we know how!

Seems I had a lot of comments asking questions about “how to help”....well, first let me say that I’m not a doctor.  This blog is intended to give those of us who suffer information and knowledge about AS, and let’s face it, it’s basically things happening with me and things I learn from others!  It’s all about sharing and very important that we realize that we all present differently and sometimes even have differing symptoms and pains!  But the more we share and get the word out there about AS, the better our care will be!  

Some comments have been how to help without medicine.  Folks—-I’m not sure you can do that!  How do you manage a disease without medicine?  Find a good rheumy and get on a drug protocol that will MANAGE your AS.  Sometimes you go through a LOT of trail and error finding what will bring you relief, but definitely get that help that is much needed so you can “do life”.

Be sure that you understand all that happens when AS is attacking your body!  I loved that I finally saw this picture in my doctors office because folks IT’S NOT JUST THE SPINE!  I’ve shared this before, but thought I’d share again.  Knowledge is key!  Learn all you can about what’s going on with YOU and then talk with your doctor on how to treat and manage your AS.

For me, since my last post, I’m enjoying being a grandmom (Mo) to my precious girl Lilly!  She brings so much joy in our lives!  I never understood the “grand” part till now!  It is certainly GRAND!  

I’m still on Cosentyx injections and also methotrexate injections trying to just do life and manage this disease the best I can.  Yes, there are tons of other meds I take as well.  Find what will work for YOU and do it!  Try things and see if will help.  There is no cure only managed care and what may work for you, might not work for me!  BUT, it doesn’t mean you shouldn’t try and share!  We are all on this AS journey together and we need to fight for ourselves and each other!

AS has my body but NOT ME!!


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