Hi Lizzy, your journey is very inspiring. Balancing life, myositis and work is a challenging but constant learning experience. Wishing you all the very best. Take care.

@lizzysawrus This is an amazing article! It’s interesting thinking about rewatching things like Queer Eye, and other shows, with an entirely different perspective. Disability aids are tough to “accept” when we are on the younger side. It took me a long time to be okay with being seen using a rollator or walker, scooter, and my trusty cane. Vanity has to be put aside when dealing with a disabling disease, not to mention the weight gain with steroids. I always appreciate your honesty, and your helpful tips you include for others going through similar experiences.

@lizzysawrus Great article! I have welcomed many of my family members and friends into our world. Many of them told me they had no idea how difficult life is like this so yes, better understanding is one of the bright sides of this awful virus.

You had me at placebo…. now after commenting I’ll continue reading lol…. we are climbing up that hill….

1 mg of steroid (Prednisone?) every 7 weeks? is that right?

thank you Lizzy for sharing; and belated Happy Birthday 🙂 i almost got anxious reading this only because yes, trying to prepare and anticipate the limits of such an adventure is very…very…hard. and no one gets that ..except us. All the limits you have to anticipate and/or put in place can sometimes confuse people. and the snorkeling, the scratches, …i was right there with you worrying – lol. and then re-setting your own personal expectations: that can be depressing, and frustrating: Someone who was once a strong swimmer having to be pullled along by the JetSki: I know was hard.
I am ALWAYS thinking exit strategies now. and yes, you are right: spontaneity is a huge NO.
it does take away some of the joy – but we learn how to find joy in places most people don’t.