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A Lovely Lupus Life

Finding The New Normal After A Chronic Illness Diagnosis

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This was taken 2 weeks ago at my last #benlysta infusion before moving to Virginia. I have since started a new job, in a new state and am in the process of switching to new health insurance. I’d like to say that transitioning my medical care was smooth and easy, but I’d be a liar. It has been a complicated cluster fuck and still is a complicated cluster fuck to say the very least. I have had a doctors scheduling staff basically tell me that they don’t care if I end up in the hospital because of missing TWO infusions (they claim they can’t get me in until March). Then when I finally get ahold of an actual doctor and he puts in a referral to get my infusions before I see him, I have to jump through hoops with the infusion center with the new insurance and benlysta gateway. Basically - I’m still waiting to schedule an infusion that I’m due for in less than 2 weeks because of administrative bullshit and it’s infuriating! I feel like I spend all day arguing on the phone with people about a medical treatment that I NEED to sustain! Anybody have any suggestions for dealing with asshole medical professionals?!

2018 was a tough year, but we made it through! For me there was a lot of frustration in my health and home life, battling depression, and what felt like a lot of people around me in very poor health. All that being said there were some beautiful moments with amazing friends/family...lots of laughter and love. As we roll into 2019 I’m feeling pretty good about the year ahead. This is going to be a year of a lot change for me - starting with a move to a new state in 3 days and leaving a job that I’ve loved for the last 6+ years, but I’m excited! So let the year of adventures begin!!! Wishing you all good health, love and everything you desire in the year ahead!! Happy New Year! 🥂❤️

So excited about this Christmas present!!! Anybody done the the health part of #23andme ?? If so, what are your thoughts?? Wishing you all a Merry Christmas and Happy Holidays! ❤️🎄🎁

So many big life changes in the works that I can’t wait to share, and then there’s this...the constant, and the thing that everything has to be scheduled around. These days have become oddly comforting, is that weird??

Today marks two years of monthly benlysta infusions (bringing my total to 26 benlysta infusions)! So wild to think about.

Need I say more? 🤔

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All views expressed on this website and associated social media accounts are my own and do not represent the opinions of any other entities. The information presented on this website and associated social media accounts is not intended as professional medical advice and therefore, all responsibility is taken at your own discretion and risk.

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