Tuesday, January 9, 2018

Happy 2018!

Happy New Year!
Only a short 4 months since my last post… ooops! Thank you to “Tough Jelly” for the jog. I’m here to update!

The past few months haven’t been too eventful, as I have been focusing solely on getting my left arm to move again. Surgery in October went well. I had a capsular plication on my left shoulder as well as a repair to the labrum where it had pulled away from the bone (sorry for the cringe, mom).

My surgery date fell on the day before the
Huntington Beach Color Run, which I had
planned to attend with friends. They made a
little cut-out of me and brought me along!
The procedure was a success, as my new range is “safe” and no longer hyper-mobile. Pain is gone as well (well, actually I can’t lift my arm up high enough yet to know if it would hurt, but I think I’m good – Ha!).

The past 2 ½ months of physical therapy have been intense. My shoulder and arm had atrophied significantly, and sitting on the couch for a month drugged up, eating Cheez-Its didn’t help me much either. Slowly but surely though, progress is being made.

I have otherwise been doing well. I got the flu in December, and received my first Tamiflu Rx. I think that it helped, but it still took me about 2 weeks to shake and my appetite didn’t return for about a month.

The holidays were a lot of fun and although my left arm wasn’t too much help, we were still able to host both Thanksgiving and Christmas Eve.

Teddy the fighter!
Our pup Teddy’s cancer returned in his lymph node, causing it to grow to 2cm. Then, in 2 months’ time it shrank down to 1/2 cm, which is practically unheard of (aka “a miracle”)! We have been so blessed with so much bonus Teddy time! What a little fighter. He’s so happy and full of life; I guess he’s just not ready to go yet!

At my last Rheumatologist appointment, I was given the go-ahead to have my next Rituxan infusion in March (one month “late”). This will push the following infusion (also one month “late”) to October, so I can enjoy more of the summer. I’ll then plan to go back to every 6 months.

I have big goals for myself in 2018. At my recent post-op, the surgeon said that it’s a realistic goal to be ready to golf by spring. This will involve a lot of hard work, but I’m ready for it! I’m planning on 2018 being my strongest year since my diagnosis (2010)!

My next Rheumatologist appointment is in a month, so I’ll be able to see how my labs are doing! That’s usually my cue to update, so I’ll follow up with you then!

Hope that you had a wonderful holiday season with your family and friends.
Thank you for thinking of me and mine!


  1. All such fabulous news! PS- I know you weren't sitting on your couch eating cheetos;)

    1. You are too sweet, Sarah - and yes I clocked an impressive amount of couch time! Haha!

  2. Just wanted to say I've read your entire blog - love it - so helpful! I was diagnosed with DM in October, though suspected it when my cuticles got all red and ragged in September of 2016 and I googled what could cause that. I had rashes, scalp issues and muscle pain (but not weakness). Took 3 rheumatologists and 3 dermatologists. I'm doing well, but it was very scary for a while - because as you know this disease can be scary. Just finding others who also have it and have worked through doctors, labs, tests, etc is so helpful. Glad you are doing well!

    1. Hi Danielle!

      Thank you for the note. I'm glad that you have found this blog helpful and mostly that you have finally received a solid diagnosis!

      You are so right that the first months or years for some can be so scary. It's all those unknowns.

      My hope for you is that with information and answers from a team of doctors that you trust, those fears decrease and your confidence increases. I hope that your body is able to respond to your medications and fight for you! Sometimes it takes trying a few different kinds of drugs, so don't get discouraged if you don't get that magic combination on the first try.

      You've got this and I'm cheering you on!