Day 3 #RDBlogWeek –My Story from diagnosis and beyond. (Everything Else Prompt.)

Day 3 #RDBlogWeek –My Story from diagnosis and beyond.

Before Diagnosis

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.

Beyond Diagnosis

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.

#RDBlogWeek Prompt 5-Wildcard-Everything Else

please note I’m not blogging about the main Prompt 5 as I feel I don’t know enough about the topic of Marijuana with regards to Rheumatic Diseases it also isn’t legal where I am. If it was legal I would no doubt try it. Instead I am going with one of wildcard options called Everything Else.

WILDCARD

Everything else – Is there something we missed in this year’s prompts?  This wildcard is your place to add it in.  Not everything made our list so be adventurous and take us in a new direction.  Sometimes the everything wildcard is the seed of a new prompt for next year so let your mind roam and see where it goes.  Maybe mindfulness is on your mind?  Or perhaps you have a funny story?  We are all ready to hear the scoop on what is on your mind that was missed elsewhere.

  • Events/Orgs in Advocacy/volunteering that I am thankful for being involved with and proud of. What Are You proud of?I would love to read all about it please leave your achievements in the comments.
    1. Met the CEO of The International Foundation for Autoimmune and Autoinflammatory Arthritis in May 2018.
      Met the Publisher of Real Life Diaries- Living With Rheumatic Diseases in person in February 2018.
      The #SufferingTheSilence Postcard Awareness campaign for Invisible Illness Awareness Week-This was a real display of people with their faces and what they lived with in Jackson Square Park New York.
      Rare Disease Day Awareness -Feb 28th
      Epilepsy Awareness-Purple Day March 26
      April 2nd Autism Awareness light it up Blue Day
      23-30 of April #Painpatientsadvocacyweek
      #HealtheVoices virtual attendee April
      Arthritis United conference-virtual attendees Arthritis conferenceMay –
      ArthritisNSW #MoveItInMay
      Fibromyalgia Awareness Day-May 12th
      WTFix conference virtual attendee May 17th
      AIArthritis Day/WAAD May 20th
      June-Migraine and Headache Awareness Month
      The #MoveAgainstMigraine Movement(part of support group)
      Shades of Migraine-June 26th
      The Smiley Faces campaign
      August-Dazzle4Rare
      The Heart Project-July
      NPW-National Pain Week(Aus)-July
      Part of the Top Squad for Invisible Illness Awareness
      Invisible disabilities Week October
      InvisibleNoMore campaign
      Chronic Pain Awareness Month-September
      Rheumatic Disease Awareness Month -September
      RA Blog week end of Sept
      World MH Day October 10th
      Mental Health Tip Sharing Week
      World Arthritis Day October 12th
      Writer in real life diaries-Living with Rheumatic Diseases(Published book available on Amazon(group project with other patients)
      #SavvyBassador and Pioneer Part owner of Savvy Cooperative
      International Pain Foundation Patient/Caregiver Partner
      Member of the #BreakThroughCrew and PatientsHavePower tribe with Clara Health
      Blue Ribbon Project Ambassador
      Member of the WEGOHealth Patient Advocacy Network
      Wego Health Best In Show Twitter and best in show Facebook Nominee (2017)
      International Foundation for Autoimmune and Autoinflammatory Arthritis Rep and Vocal Impact Partner
      USPain Foundation I support Pain Warriors Pledger
      IPain Foundation Hero of Hope Finalist(2018)
      Champion of Yes-#ChampionOfYes Arthritis Foundation
      I have been featured on a few Rheum blogs and Chronic Illness Blogs.
      Member of #CureArthritisCrew Arthritis National Research Foundation
      Orange Ambassador #GoOrange #IPain #NERVEmber
      #IHaveTheNerveToBeHeard
      ACT(A Community Team)-IFAA’s Project I was part of the team as admin
      Contributor in IPain Living Magazine
      Rheumatoid Patient Foundation Member
      The Lines Project in December #TheLinesProject
      #TheHeartProject
      Supported the KISS Sarcoidosis Walk for my friend Kerry
  • I Thankyou all for reading my blog especially during Rheumatic Disease Blog Week all this week which has tied in with Rheumatic Diseases Awareness Month During September. I would also like to thank Rick Phillips of http://www.radiabetes.com/ for hosting the Blog week each year for this is the 4th year running.Well done and Thankyou for the opportunity to take part. -Judy The United Advocate