@jabrown0407

Hi! I'm praying for the results today. Was having mixed feelings about + BUT now I'm excited to find out. The daily headaches for about 3 years now, occasional relief with narcotics, hate to take them but necessary evil.

Woke up with my usual headache, did start on 80 my prednisone yesterday and I did have some relief from the crashing ones, blurry eyes, but mostly left so assumed that's where I could have gone blind.

I'm a pretty voracious reader of self help books for my ADHD, spinal herniations and everything Autoimmune. My Mom has both PMR and GCA and has been very successful keeping them both in remission. She knows her body well, like I do. The minute her SED creeps up a few tics and she feels it. She goes on a short term dose of prednisone, nips it and NO resurgence of these HORRIBLE diseases. Plus they're hidden, meaning, we get, Wow you dont look sick and you do fun things. Lol, I am opposite of homebody, I do like it for a couple few days but will go into the dark place if I'm stuck at home, like with my broken right foot and cant drive. Luckily ive 2 amazing friends who know me better that I know me and by day 3-4 they're asking if i want them to pick me up so we can go out and about for the day with no driving for me and something relaxing like walk to a waterfall and enjoy nature's beauty and a restaurant where I can chat briefly with random strangers lol.

I believe about 50% have the PMR/GCA combo, so since they based my No PMR diagnosis, with the whole symptoms Ive had for about 3-4 years now will definitely be reconsidered. My SED rate has never been high through this entire multi year journey.

Honestly, ive never ever been a mean person, occasionally mean outbursts which typically happens when my body head all hurt A LOT. So, I try and give myself some grace. But do I ever wish to go back to a few docs and say FUCK YOU for NEVER listening to me.
My current GP (MDVIP doc) is FABULOUS and listens to me always. He's getting a big hug along with my Rheumy, she's been instrumental in saying, we will get to the bottom of this and diagnosed me with Hashimotos. Next was resolving all my other pain and she's ordered so many tests on me, I'll probably glow in the dark soon. Which is kinda cool, ready made night light for my multiple trips a night to pee. Next on my list.

I'm embracing growing old gracefully and being able to ski & hike until I drop dead. With all this craziness its put a huge damper in my favorite activities (live football is another, all live sports) and I'm like walking on clouds with a bad headache and wonky tummy (ive got SIBO) feeling SO HAPPY.

This group at Mayo is going to be so good good for me, THANK YOU for such a nice response and I'll pray for you too 🙏 ❤️

From, maybe, a member of the GCA tribe💪 ❤️