Mel and I have Rheumatoid Arthritis (R.A.)
A mother of one spectacular 9 year old boy.
Married to a man whose goodness blows my mind every. Single. Day. (he is amazing).
Happy… I am happy and peaceful inside.
Employed full-time and extremely grateful for that, after spending 7 months unemployed due to my disease, then changing careers to something I can do with a chronic disease.
A gypsy at heart – my husband, son and I spent 5 years in a caravan travelling Australia and living and working in different places. This experience redefined me entirely.
Trying to get used to living and functioning (and feeling content) in suburbia again, without constant travel adventures.
A stark-raving-minimalist. We live in a 24ft by 9ft caravan – by choice. I love having as little possessions as possible.
A vegetarian since April 2017 and then vegan/gluten free diet from January 31, 2018 onwards. My husband and son are vegetarians, but they hope to progress into a vegan diet too.
Incapable of resting – I drive my husband mad with my inability to rest. I am either asleep or firing on all cylinders (though my body cant keep up with my mind anymore). I cannot stand to “sit around” (unless it’s at the beach). Sometimes my R.A demands that I rest and I am trying to learn how to accept that without losing my mind. I would never rest if I didn’t have to.
Learning how to accept the limitations R.A puts on me and learning how to live with it and still be me. Essentially completely relearning about myself, my wants, my needs, my limitations etc. No big deal…. (its a big freakin’ deal).
Trying to lose half of my body weight. I am hoping this will take some pressure off my joints and help me to remain active as my disease progresses. I also want to wear pretty clothes. Last year I lost 25 kilos, then I failed a(nother) R.A. med, and stopped being able to ride my bike to 11-22 kilometres a day, and gained it all back.
Currently unmedicated – I keep failing Rheumatoid Arthritis drugs, so far I have failed Meloxicam, Celebrex, methotrexate, Plaquinil, Arava and I have a bad relationship with Prednisone. Next I will try Sulfasalazine, then my Rheumatologist plans to try a bunch of oldschool treatments because I don’t yet qualify for funding for Biologic Treatment (on paper) by Australian standards and i cant afford to front the $2500 per week bill to buy the injections myself.
Basically… I am just trying to accept the hand I have been dealt but still live the life I want to live. My goals and hopes and dreams most certainly did not disappear when I was diagnosed with this disease, they just became a little harder to achieve and a hell of a lot more necessary.
This blog is a place for me to release the frustrations and sometimes extremely sad parts of living with Autoimmune disease and to celebrate the victories I experience. It is also a place for me to plan my future.
I refuse to live a mediocre life and that refusal leads to some fairly conflicting experiences, emotions and days in general.
Read on if you like REAL. Read on if you love highs and lows and everything in between. Read on if you have R.A and want to feel a little less alone in what can be an extremely miserable disease to deal with. Read on if you want to read a real account of being limited by a physical disease, but still brimming with goals and hopes and dreams.
Don’t read on if you prefer perfection and zero contradictions.