Day 3 #RDBlogWeek –My Story from diagnosis and beyond.
In 2012 I began having trouble trying to dress myself and put my shoes on, my hands were swelling and I could barely walk.
Diagnosis Pre seeing Rheumatologist
I went to my local GP he ordered some blood tests and they came back sero positive Rheumatoid Arthritis I was then informed my Rheumatoid factor was quite high and I was given a referral to a Rheumatologist in Canberra 3 hrs from where I live. I also had some X-rays done which I had to take with me when I went to see the rheumatologist.
Preparing and seeing the Rheumatologist
At the time of diagnosis there was a practising Rheumatologist locally but unfortunately wasn’t taking new patients and I had to go to Canberra a few times before she said to the Canberra guys that it was too far for me to travel and to set it up for me to start seeing her where I lived.
My rheumy was a travelling rheumatologist who’s main offices were in Canberra but would travel to where I lived.) I am very glad that the decision was made and the Rheumatologist fully understood the impact travelling to and from had on me as a newly diagnosed patient. (That made me feel good because she cared)
It was decided that I would begin treatment in sept 2012 which was Methotrexate, Pyralin EN, Cortisone(Steroid) and plaquenil I think I was on those for around 12 months. After 12 months I wasn’t seeing much improvement so I tapered off the steroids,stopped plaquinal.
Beginning a Self injecting Biologic Treatment
In 2013 I started a self injecting biologic called Humira.(I hated humira i wasnt even sure i was even getting the correct dosage as my hands were always shakey during the process of injecting and after many blood tests it was confirmed that it wasn’t helping.)
Stopping Humira and beginning Actemra
In 2014 i switched from Humira to another Biologic called Actemra I have been on that ever since aswell as Pyralin and the Methotrexate but I don’t have to self inject and it’s given every 28 days via iv infusion from an infusion Nurse.
Apparently Actemra is the best biologic that Australia has which is what they told me at the time. My opinion on that is the best one is the one that helps the individual as there’s no one size fits all approach when treating the many Rheumatic conditions patients live with.
I always wonder why blood tests can show good results but it doesn’t always reflect how we as patients feel but what I do know is the treatments are not a cure but slow further damage and disease progression.
I was informed by the Canberra Rheumy to avoid too much sun as I was at higher cancer risk and to try and avoid being around anyone with cold and flu because my Immune system was weak and compromised and was risky as I could end up going to hospital.
How do I manage my life with RA?
It’s pretty easy for me to manage when I am at home since I can rest if I need to. I know my limitations and I set times for what I need to get done. I keep a planner, a white board and a notebook. I keep my appointments and online meeting engagements in my mobile devices for tracking it better. I even plan activities outside of my Advocacy. I use Fidget spinners, photography, games, puzzles, nature, adult colouring books, music, Netflix and craft to defocus. Some of my other relief options include relief wrap, acupuncture mat, ice packs, amongst many others.
I also volunteer with multiple non-profits because I believe in working together to make an impact and providing the necessary support. #InthisTogether.
How did RA impact my life?
The impact on my life has been massive since I stopped studying altogether. Instead, I now focus on what I can do from home and that’s important to me because if I need to rest then I can. I know my limitations and I know when to stop.
There have been many downs but I quite often say there’s also so much I am grateful for, such as my friends both old and the new that I have made through support groups and webpages for RA and other chronic Illness, my family, my creativity, my sisters dog cruze, non-profits I volunteer with and the internet in general.
Without all of that, I probably would have struggled but because I have supportive networks I get through my bad days as well as any good days.
I never have completely pain free days but some days are better than others. I have learnt to reach out when I can’t do it on my own. I also appreciate all the non-profits I am connected with as well because they provide a lot of valuable information and we can all learn from each other.
My connections and Advocacy
Chronic Illness Awareness Advocate-United Advocacy Australia
Patient Partner for the International Pain Foundation (USA)
AIArthritis Representative with International Foundation for Autoimmune and Autoinflammatory Arthritis (USA)
Australian Ambassador #CureArthritis Team Member-Arthritis National Research Foundation
ChampionofYes -Arthritis Foundation Ambassador
Face of Arthritis-Arthritis NSW
I am a savvy cooperative pioneer member
Contributor in Ipain living Magazine
I’m a Writer in Real Life Diaries-Living With Rheumatic Diseases. Find it on Amazon.com for my American followers and Booktopia for my Australian followers and any other country also found in all good book stores.
Thank you to everyone who has read my Blog I sincerely appreciate it.