Not If But How. Living with AS

 When you drop a pebble into a still body of water, you see the ripple effects from that pebble for what seems to be a never ending circle. What a metaphor for life! We have no idea the ripple effect that our behavior, thoughts or words will have on ourselves or those around us.  Often that ripple effect based on our behavior, thoughts or words are not even intentional!  I used to work out a really fun gym.  The trainers were often dressed up in costumes, we had "challenges" that we would work towards finishing and it was pretty common for the disco ball to drop from the ceiling, the music get loud and we'd have a dance break.  I loved this gym because with all my physical limitations, modifications were no big deal. After completing a crazy physical challenge another gym goer came up to me and said, "If you can do this, I can do this.  I watch you all the time and you motivate me".  Wow.  I had no idea that showing up to the gym, doing my best ha...

Years ago my mother had one of "those flights".  Weather delays, baggage delays. Winter coats which means standing at baggage claim overheating because of your heavy winter coat.     When she finally got her bag, it was crushed.  Off to customer service she went.   The line was already long.   People were angry, yelling and treating the poor woman behind the counter as if she alone had caused all the weather and baggage chaos.  Seeing how well the yelling customers were doing, my mother calmly waited for her turn with the over worked agent. "An elephant stepped on my suitcase" was all she said.  And then she stood there , quietly, resisting the urge to say another word.  Click. Click. Click   Within about 2 minutes the agent looked up and with a smile handed my mother a voucher for a new suitcase plus extra money to replace the damaged contents of her smushed luggage.  AS is a systemic disease. While people thin...

 I'm about 9 years into this AS journey. Being a veteran ASer I have become very adept at knowing which of my many doctors to call and when.   I woke up on Sunday morning quite stiff and achy.  When I reached down to give my small dogs their morning treats I experienced a fairly high level of pain and the all too familiar "zing" of nerve pain and muscle spasm.   Having had 8 lumbar surgeries, whenever my back hurts I quickly do a body assessment. Did I sleep in a funny position? Did I overdo my exercise yesterday? Did I drink  or eat inflammatory foods yesterday? Do I have new numbness or muscle weakness? Where am I in my infusion/ med cycle? Is this resolving with a little movement and/ or a hot shower?  Having been down the road of OH GEEZ, I'm in trouble NOW vs take a hot shower or hang on until the next infusion I've become quite adept at knowing who to call and when. This time my pain resolved with a cup of coffee and a hot shower. I also cal...

 I am on a few different facebook pages for Ankylosing Spondylitis. One of my biggest pet peeves is when people say, "I failed a biologic".  YOU DID NOT FAIL.  You did absolutely nothing wrong. The medication simply did not work for you. PERIOD. Full stop.   Rheumatologists, unfortunately do not yet have the tool to be able to KNOW which medication will work with your body.  Literally it's a guessing game.  Depending on your symptoms they are using their knowledge about the different biologics to make an educated best guess. But, it is a GUESS. There is not a way to KNOW which medication your body will respond to.  Unfortunately, biologics also take three to six months to fully work, or not work.  So we have to maintain a positive mindset, believing a medication will work all while being in very real pain.  The other crazy part of biologics is sometimes our bodies make antibodies against the medications. That can happen in a short period...

As a teacher of students who are Deaf or Hard of Hearing I've spent my career teaching language. I focus on words, meanings and the power they carry. Throughout my career I've worked with students who have great positive attitudes and those that live in a really negative headspace.  I discovered two tiny words that completely change the meaning and power of a sentence are "get to".   Rather than "I take handfuls of pills every morning" ( with associated eye roll)  Flip it to "I get to take these medications!" Rather than "I have to have another back surgery" flip it to "I get to have this surgery!" By the way all 8 of my back surgeries have relieved my pain and returned me to living my life.  My body just really likes to degenerate or herniate discs!   Rather than "I have to see another doctor" flip it to "I get to collaborate with another really smart doc who will help take care of me." Try it.  It's inc...

 February 15, 2023 In my previous post I referenced  a story that I would tell you about "put down". My grandmother wasn't feeling well. She turned to my mother and said "I either have the stomach flu or a touch of cancer".  Off to the doctor they went. You know the first visit paperwork- name, address, insurance, symptoms etc. Well when they got to the box for birthdate, my proud, always put together grandmother tapped the desk with that perfectly manicured index finger and said "Put down 1912".  PUT DOWN said my mother, holding back the laughter. You have to actually write down your real birthdate. In her mind she was not "that" old. "Put down" has become another of the tools I use to keep my positive mindset to overcome challenges my AS throws at me.  Words become thoughts. Thoughts become action.  Put down that I will exercise 4 days this week.  Put down that I will hike the Manitou Incline.  Put down that I will reorganize my c...

 February 14, 2023 Hi! Welcome to Not If But How. Living with AS ( Ankylosing Spondylitis) This blog is dedicated to sharing what I have learned about living with AS. My entire life has prepared me to overcome challenges that AS throws at you.  I didn't know my life was preparing me for this journey, but lo and behold, it did. I grew up with an amazing Grandmother.  My Nana Mary was all of 5 feet tall ( with heels and her nose pointed towards the sky) and 112 pounds.  I grew up with this spit fire of a woman who was born in "put down 1912", almost completed her law degree, ran a dental office and raised 2 boys as a single mom.  The "put down" is a whole other story that I'll tell in a different post. Nana Mary lost her husband George when her two boys ( my father and my uncle) were the tender ages of 15 and 17.  I just can't even imagine.  She was a beautiful and smart woman who had many men who absolutely wanted to marry her.  She wanted no part ...