Lizzy Finn

Lizzy Finn wrote a new post 4 months, 2 weeks ago

I am on day four of bed rest following another stint in hospital (more on that shortly) and I am BORED OUT OF MY SKULL!

I have watched EVERYTHING on Netflix, and other associated streaming apps. I am in that […]

Lizzy Finn wrote a new post 9 months, 2 weeks ago

I write this sat in the infusion clinic at Royal Melbourne Hospital. I am surrounded by other people, just like me, hooked up to beeping drips slowly feeding their ailing bodies various potions and […]

Lizzy Finn wrote a new post 11 months ago

One of the (many) downsides of having a rare disease, is that there are limited accounts or experiences from real patients who are going through the same thing as you. That is why #MyositisLife is such a fantastic […]

Lizzy Finn wrote a new post 2 years ago

What a year 2020 was for us all. While many were working from home, figuring out how best to balance a laptop and cup of coffee on the sofa, trying to home-school their children, caring for vulnerable family […]

Prasad Aldangadi replied 1 year, 8 months ago

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.

Lizzy Finn wrote a new post 2 years, 6 months ago

My partner and I binge watched all of Season Five of Queer Eye recently, and it was delicious. Once again, I fell in love with the Fab Five. I love how they meet people where they are. I love how the heart of […]

Jerry Williams replied 2 years, 6 months ago

@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.
- Lizzy Finn replied 2 years, 6 months ago
  
  Thanks Jerry – really appreciate the kind words 🙂

Lizzy Finn wrote a new post 2 years, 7 months ago

Cancer is what we are all afraid of, isn’t it? All the TV shows we watch, the movies we see, the dramatic health story is normally a cancer diagnosis. We’ve all seen the image of the woman stoically losing her […]

Lizzy Finn wrote a new post 2 years, 10 months ago

It’s pretty scary out there, isn’t it?
Get through this, there are no second chances. I’m listening to some of Placebo’s music right now, which seems fitting.

It’s an ironic world out there in the chronic i […]

Jerry Williams replied 2 years, 10 months ago

@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.
Rachel Dougherty replied 2 years, 4 months ago

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

Lizzy Finn wrote a new post 2 years, 10 months ago

I saw my specialist today and let’s just say, it wasn’t the news I wanted.

Nine months, now, I’ve been sick. And I’ve stayed strong throughout it all. Through the month in hospital when I was poked and prodded […]

ac replied 2 years, 10 months ago

1 mg of steroid (Prednisone?) every 7 weeks? is that right?
- ac replied 2 years, 10 months ago
  
  to further explain my confusion: the body naturally produces (barring cushings syndrome of course) 5 mgs of cortisol a day. So you taking 1 mg every 7 weeks is odd. also. I am on MTX and have been for almost a year; it has been very good to me. hope the same for you.
- Lizzy Finn replied 2 years, 10 months ago
  
  Ah, sorry. I am on 7mg a day and we *were* tapering by 0.5mg every two weeks (so 1mg less per month) and now we are tapering 1mg every 7 weeks. So it will take me 7 weeks to go from 7mg a day to 6mg a day. Which means it will take FOREVER to come off them. I am in steroid withdrawal – my body isn’t naturally making it any more. S it is really hard and is making me really sick. I started out on 100 mg per day 🙁
- Lizzy Finn replied 2 years, 10 months ago
  
  Also, glad MTX is treating you well. I hear it is very well tolerated once you get used to it. At the moment it is giving me about 5-6 days of severe nausea 🙁
- ac replied 2 years, 10 months ago
  
  RE: MTX and nausea: i get it; that is why i switched to the Sub-Q. So i give myself a shot every week. are you taking the shot or pills?

@lizzysawrus

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The Healing Power of Creativity

Myositis Awareness Month Honesty

Navigating ambiguity, building resilience, and celebrating wins: what I have learned after three years with a rare disease

Rituximab – what to expect

MSU on a mission