Tuesday, September 25, 2018

September Update

Hello there and happy September!

While my next rheumatologist appointment and infusion are not until mid-October, I am checking in now before I once again head in for shoulder surgery.

This will be my second laparoscopic labral repair and capsular plication – meaning a repair of tears on the labrum and adjustment to correct hypermobility. I am not looking forward to going through this procedure and recovery again, yet am glad to get it over with so I can move on with my life with pain-free shoulders that only move as much as they’re supposed to!

I will be having my next infusion while in recovery from my procedure. Unfortunately, Blue Cross has [yet again] made changes to the policies regarding Rituxan and other life-saving drugs, so that they are more difficult to receive.

I can no longer get infusions at United Hospital in St Paul and am not eligible for home infusion. The only place in the state that I can get the infusion currently is at Mercy Hospital in Coon Rapids, so I’ll be hauling my icing pump and set-up there.

I’m anxious about these recent insurance changes, but trying to stay present. There is still one place left and I have my appointments!

Still holding off of Azathioprine and hanging steady. I have struggled with a little fatigue and thigh weakness this summer, but for the most part I improved from my mini flare this past spring! I have still been able to do most of my favorite things!

At my last post in June, I was a couple of months into giving the Autoimmune Protocol (AIP) diet a try to see if it would help alleviate some of my ongoing symptoms.
AIP is similar to paleo in that it is free of grain, dairy and processed food. It also removes inflammatory foods, such as nightshades, sweeteners, coffee and chocolate.
I would say that I was about 90% there and just had to stop. My digestive system just couldn’t handle it and I was miserable.
My body felt amazing and I was sleeping like a rock, but that is where the pros ended for me.

So, I have added back a serving of dairy a day, along with rice and oatmeal. My stomach feels a million times better, but my body doesn’t. I’ll give it another try after I have recovered from my surgery!


Also noteworthy for September: Myositis Awareness Day on the 21st (although now we get a whole month in May), my 38th Birthday on the 23rd and my husband and I celebrate our 11th Anniversary on the 28th, so there are a lot of things to be grateful and happy for this month!

Hopefully focusing on these things (and a couple more rounds of golf) will help calm my nerves about my upcoming surgery!


Thank you for your support and love, as always! 

Hope you enjoy my favorite time of year: Fall!
XO, M

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