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Lizzy Finn published “Story” 23 hours, 6 minutes ago
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Lizzy Finn wrote a new post, Returning from rock bottom 23 hours, 6 minutes 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 […]
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Lizzy Finn commented on the post, Queer Eye and the chronically ill… 6 months ago
Thanks Jerry – really appreciate the kind words 🙂
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Lizzy Finn published “Story” 6 months ago
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Lizzy Finn wrote a new post, Queer Eye and the chronically ill… 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 […]
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Jerry Williams replied 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.
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Lizzy Finn replied 6 months ago
Thanks Jerry – really appreciate the kind words 🙂
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Lizzy Finn published “Story” 6 months, 3 weeks ago
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Lizzy Finn wrote a new post, The Big C 6 months, 3 weeks 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 […]
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Lizzy Finn published “Story” 9 months, 2 weeks ago
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Lizzy Finn wrote a new post, Welcome to our world 9 months, 2 weeks 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 […]
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Jerry Williams replied 9 months, 2 weeks 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.
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You had me at placebo…. now after commenting I’ll continue reading lol…. we are climbing up that hill….
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Lizzy Finn commented on the post, Back to square one? 9 months, 2 weeks 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 🙁
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Lizzy Finn commented on the post, Back to square one? 9 months, 2 weeks 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…[Read more]
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Lizzy Finn published “Story” 9 months, 4 weeks ago
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Lizzy Finn wrote a new post, Back to square one? 9 months, 4 weeks 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 […]
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ac replied 9 months, 2 weeks ago
1 mg of steroid (Prednisone?) every 7 weeks? is that right?
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ac replied 9 months, 2 weeks 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.
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Lizzy Finn replied 9 months, 2 weeks 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 🙁
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Lizzy Finn replied 9 months, 2 weeks 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 🙁
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ac replied 9 months, 2 weeks 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?
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Lizzy Finn published “Story” 1 year, 1 month ago
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Lizzy Finn wrote a new post, Infection watch! 1 year, 1 month ago
Well, it was bound to happen at some point. INFECTION WATCH: CODE AMBER!
As those of you with a compromised immune system know, the biggest threat to my health right now is picking up an infection while my […]
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Lizzy Finn wrote a new post, The travels and tribulations of going on holiday with chronic illness 1 year, 2 months ago
Also known as how to travel (or not) with a chronic illness whilst immune-compromised, but I didn’t think that was a catchy enough title!
It was my birthday this week. Now, I normally go on holiday for my b […]
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ac replied 1 year, 1 month ago
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.
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Lizzy Finn commented on the post, Kept Promises – "Love Never Fails" 1 year, 2 months ago
This is beautiful – thank you for sharing 🙂
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Lizzy Finn commented on the post, Take a hike Myositis 1 year, 2 months ago
Great job! I went for a hike (3k, all flat) last week and was SO THRILLED that I managed it, it was such an amazing feeling. Yours sounds intense, you were really brave. I wish for many more successful hikes for you 🙂
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Lizzy Finn published “Story” 1 year, 2 months ago
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