Not If But How. Living with AS

 We spend quite a bit of time searching out quality doctors.  We ask friends and other providers for referrals. We check ratings on line etc. No matter how GREAT A doctor is, it is OUR responsibility to be a great patient. I have assembled outstanding doctors and been a terrible patient. When I was a terrible patient, I didn't get the outstanding care that my doctors typically deliver. Before my AS inflammation was under control I was in crippling pain.  Emotionally I was a mess. My pain was out of control, I was exhausted from the pain and had lost hope that the medications would actually work.  My mother had recently passed away and my heart. was broken.   I sat in the chair with my rheumatologist. Tears streaming down my face. She looked at me, my chart and pretty much walked out of the room. My blood work didn't give her an indication that things needed to be changed and I was not in an emotional state to be open to any conversation.  I was shocked...

 I am not a frog. Remember the frog from your 9th grade biology class?  We studied muscles, eyes, heart all as separate units.   We looked at the frog as individual parts, not as a whole. Specialists tend to want to look at our individual parts, not as a whole.  Well, not MY specialists.  If I meet a new doc and they don't look at me as a whole person, or refuse to collaborate with my. other docs they find themselves thrown off of Team Gail. I had a visit with my nephrologist.  He spend the appointment going over my bloodwork ( which was all in range) and my medications.  He got to the anti-inflammatory that I was taking.   He  laid into me about how taking anti-inflammatory medication for this long will put me into renal failure.  He even said "You keep this up and you will be on dialysis in 10 years".   I was shocked.  I got myself together quickly and had the presence of mind to ask, 'So what else do you recom...

 As an ASer we have many friends, I mean doctors.  Some of them you NEED to see in person.  Others review blood tests or images and never actually need to touch your body. My insurance is amazing. It truly offers me great benefits.  However, when I see a specialist I a pay $50 per visit.  I've learned to manage my doctors as much as they manage my care. I see a nephrologist due to reoccurring kidney stones.  Nephrologists, for me at this point, ONLY review blood work and a 24 hour urine test.  My appointment is spent with the doc looking at a computer screen.  I recently met an AMAZING new nephrologist who agreed that she can review my blood work and 24 hour urine test through the portal! Unless things go wonky, she is good with that! No need for a $50 copay. We of course agreed that if things change we may need to see each other in person. Rheumatologists need to see the whites of your eyes, squish your fingers and examine your mobility.  Th...

If you've been reading my blogs, you'll notice that mindset and language play a huge part in the success of my AS journey. Here's another example of how language can influence your mind and body. I read some threads and posts in the AS realm. A common theme is anxiety surround biologics- either infusion or self administered.  I , like many people started with an auto injector  biologic.  When I saw the retail price of of this medication I figured it must be liquid gold.  Simultaneously to getting my first auto injector pens I was reading about being a Warrior.  And like many of us, when we first get diagnosed we can be in some pretty rough physical shape. I depended on my husband for many things like going to the grocery store, emptying the dishwasher and carrying a basket of laundry.  Put liquid gold, being called and AS Warrior and having a Super Hero Husband by my side,  I end up calling my infusions my SUPER JUICE! Instead of dreading a needle in m...

 Our doctors and therapists absolutely can make or break our approach to this journey. I have the honor and privilege of living in the Northwest Suburbs of Chicago where I have the opportunity to work with THE BEST providers.  By the way, if someone isn't on "team Gail" they get replaced.  I know and appreciate that living where I do I have my choice of outstanding providers. Before I was diagnosed with AS I was in PT because of some unexplained hip pain.  After 3 months of working on this mystery pain with my therapist who I'd worked with previously for other injuries I decided I was done spending all this time PT and just get back to doing "me".  Well, the forces in the world had other plans for me.  Literally about a week after I decided I was done with PT I woke up with the most incredible chest pain I had ever experienced.  My shoulders were curled forward as if to protect my chest.  When I went to move my arms , electric shocks ran through m...