"Hold onto hope. Take charge of your healthcare"
Hold onto hope, take charge of your healthcare, be organised, take timeout just for you, do activities you enjoy it may not be to the extent it was before but focus on the little accomplishments because they all add up. Maybe even treat yourself to a reward if you accomplish something you have a go at.
Read our Q&A with Judy to discover her daunting journey with various illnesses and be amazed by her will to battle this strongly and spread her optimism to many others.
Tell us about yourself:
Hello, my name is Judy. The list of illnesses that I have is never-ending. I live with Rheumatoid Arthritis, Fibromyalgia, Polymyalgia, Rheumatica, Migraines, Rosacea, Hypertension, Eczema, Scalp Psoriasis, Scoliosis, TMJDisorder, General Anxiety Disorder, Social Anxiety Disorder, Agoraphobia, Panic Disorder, GastroEsophegal Reflux Disease (GERD) and Mild Spinal Stenosis.
I was diagnosed in 2012 after I began having trouble trying to dress myself and put my shoes on; my hands were swelling and I could barely walk. At that time, I was attending Tafe, a local education institution, where I was studying networking and Information Technology. I went to my local GP, he ordered some blood tests and they came back sero positive Rheumatoid Arthritis. I was then informed that my Rheumatoid factor was quite high and I was given a referral to a Rheumatologist in Canberra 3 hrs from where I live.
How was your treatment process for RA?
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 Plaquenil and started a self- injecting biologic called Humira (I hated Humira and wasn’t even sure if I was getting the correct dosage as my hands were always shaky during the process of injecting. After many blood tests it was confirmed that it wasn’t helping.)
In 2014, I switched to another Biologic called Actemra. I have been on that, Pyralin and Methotrexate ever since which I don’t need to self-inject. It’s given every 28 days via iv infusion by an infusion nurse. I was informed that Actemra is apparently the best biologic that Australia has.
I always wonder why blood tests show good results even when it does not truly reflect how we as patients feel. However, what I do know is that the treatments do not assure cure rather they result in a 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, compromised and it could be risky enough for me to end up in a hospital.
How did RA impact your 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.
How do you manage your 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.
What you do to keep yourself positive throughout living with RA?
I enjoy it when I see my nieces, especially my baby niece whose smile makes me smile. I connect myself with support groups and online organisations that provide me with valuable information. I also volunteer because it gives me purpose and belief that I can help make a difference, and in turn that gives me hope. I keep positive because I'm not doing it alone and I know there are others like me, and I hold much hope for them. I make my own graphics and join online campaigns for various disabilities / illnesses, which keeps me going.
Your Message for those who live with RA:
Hold onto hope. Take charge of your healthcare. Be organised. Take time out just for you. Do activities you enjoy it may not be to the extent it was before but focus on the little accomplishments because they all add up. Maybe even treat yourself to a reward if you accomplish something you have a go at.
Chronic Illness Awareness Advocate-United Advocacy Australia
Delegate for the International Pain Foundation (USA)
Volunteer with International Foundation for Autoimmune Arthritis (USA)
Australian Ambassador #CureArthritis Team Member-Arthritis National Research Foundation
#ChampionofYes -Arthritis Foundation Ambassador
Face of Arthritis-Arthritis NSW
Writer in Real Life Diaries-Living With Rheumatic Diseases. Find it on Amazon.com
Connect with Judith at:
Facebook - http://facebook.com/unitedadvocacy
Twitter - http://twitter.com/unitedadvocacy