What Resources/ Reminders/Cool stuff do you Use for help with RA?

What reminders do you use for you to take your medicine on time?

Do you use any apps to help you with RA and it's entirety?

Is there a favorite book, magazine or website that you look to

for what's new and inspirational stories about people with RA?

Where can a newbie find help with PIP and find resources for people

with disabilities? LIke housing, workplace, assistance, free help, what

they are entitled to or even to find an advocate? Do you use an advocate?

5 Replies

  • Hi Yikes2,

    I'm sure the HU community will have lots of suggestions for you but do also consider giving contacting our Helpline team helpline@nras.org.uk or visiting the NRAS website nras.org.uk There is lots of information on there regards help that is available to you and stories from our NRAS Members.

    In particular, you mentioned you wanted more information on PIP, benefits, work etc and NRAS has a number of free publications covering these topics. The full list can be found here: nras.org.uk/publications

    Although you are in the US, a lot of the information will still be relevant.

    You may also find the Arthritis Foundation a useful resource arthritis.org/

    Kind regards

    Emma - NRAS

  • Maybe l upset some with less energy than l have or turned it into a game or got in peoples faces. I feel like l have had all of my questions answered here and the rest l can find where you suggested above Emma. Thank you for your assistance. Karen

  • Hi Karen

    Best aid ? Luccozade lol

    Favourite book : wuthering heights!

    Favourite helpful app: Facebook !

    Favourite advocate ? Advocat !! Egg nog !

    Lol just kidding but NRAS help me a lot and think they r a great charity xx


  • My medicine reminder isn't anything fancy - just the alarm on my phone. Works for me though.

  • My favourite website was thelifeandadventuresofcatep... because Cathy is the first cheerful/optimistic person that I discovered with RA when I first started out and I needed that.

    I also take a lot of inspiration from phoenixhelix.com and thepaleomom.com (Sarah Ballantyne aka The Paleo Mom doesn't have RA but has other AI issues and is the author of The Paleo Approach - a very good book (but far too heavy for an RA sufferer - I recommend the e-reader version!). Both look at healing your immune system through diet and lifestyle changes.

    For people who feel really alone, rheumatoidarthritisguy.com and rawarrior.com were helpful links for me, but in the end I found them far too depressing. Maybe they are realistic but I'm not ready to throw in the towel. RA Guy's 60 second guide to RA is super helpful though... rheumatoidarthritisguy.com/...

    I also felt it helpful to Google "RA and running" and those sorts of sites to basically show me that my life wasn't on a 100% downward spiral of pain, depression and reduced mobility.

    Books I have found useful are: Full Catastrophe Living by Jon Kabat Zinn, The Paleo Approach by Sarah Ballantyne (and The Paleo Approach Cookbook), Primal Body, Primal Mind by Nora Gedgaudas, and The Power of Now by Eckhart Tolle.

    When in a lot of pain and with reduced mobility, I find that body scans and mindfulness meditations are quite helpful. You can find great gentle yoga exercises (including for arthritis) on youtube.com when you've got a bit more mobility. If your feet don't bother you, go for a walk - even better if your walk is in nature. And my personal view is that the best thing for your spirit is to get outside in the sun as frequently as possible (i.e. at least 30 minutes every day that it's not raining).

    I'm from Canada. I found the Ontario Arthritis Society to be very disappointing. They were quick to offer me splints, jar openers, etc, but not great for counselling. Seeing a psychologist was more useful for me, but only to a point. Finding Cathy's website (The Life and Aventures of Cateepoo) was a godsend for me. It was very important for me to find people living with RA and in good spirits.

    I take MTX (subcutaneously) on Saturdays, so I find that easy enough to remember. I take my Humira every second Tuesday - the opposite week of our garbage day - and I use the stickers on our fridge calendar as reminders. My Folic Acid is Mon, Wed, & Fri & I find that easy enough to remember. I take my probiotic and omega 3 + vitamin D every morning with breakfast. It's only days that I skip breakfast that I forget. Definitely not fail proof, but it works for me. I try not to stress about it! :)

You may also like...