Day 4-#RDBlogweek Prompt 4 Community

Day 4-#RDBlogweek Prompt 4 Community

Our community is often hard on each other, even going as far as accusing others of not having RA when they can physically do more than others. How can we educate our own community on RA and how it affects each one of us differently.

Letter to someone pretending to live with a condition like RA, Rheumatic Diseases or any other condition out there.(Time educate)

To whom this may concern,

Let me begin telling you about the symptoms many of us in our community live with regarding Rheumatoid Arthritis.

  • Joint Pain,
  • Swelling,
  • Fatigue
  • Fever
  • Extreme sweating
  • Dry Eyes
  • Dry Mouth
  • High BP
  • Chronic Pain and stiffness
  • Skin rash
  • Brain Fog
  • Gord
  • Anemia
  • Low red/white blood count
  • Joint deformities
  • Rheumatoid Nodules
  • Nausea
  • Weight changes
  • TMJ Disorder
  • Skin damage
  • Heart damage
  • Lung scaring
  • Inflammation
  • Bone loss
  • Flu Like symptoms
  • Organ involvement
  • Chest Pain
  • Oral Health Issues
  • Nerve compression
  • Muscle wasting
  • blocked or hardened arteries
  • Being more prone to infection
  • How Rheumatoid Arthritis is treated

  • DMARDS-Disease-Modifying AntiRheumatic Drugs and Biologics are used to treat Rheumatoid Arthritis by acting on the immune system to slow the disease progression. If you are faking I urge you to STOP doing this as we take our DMARDS and biologics to keep us moving and to slow the damage this disease can cause. You must realise that you are hurting us by doing this.

  • Some of us in the community choose other paths like taking other therapies and that’s ok too because we are all different and we all have the right to choose what works best for us.

    While u sit there faking the disease you are generally downplaying the disease those of us genuine folks live with everyday PLEASE STOP because that’s not ok.

    Sincerely Judy The United Advocate on behalf of the #RheumaticDisease and #ChronicIllness Communities.

    My thoughts on someone having or not having RA(if someone is faking or not)

    Honestly in my opinion we should all support each other everyone’s pain is valid whether someone has it worse than someone else is besides the point. If they don’t have it then of course that would be very wrong in claiming that they did but until we know for sure I guess we as a community have to assume that they do until such a time one knows for sure. The only way we would know for sure is if their doctor told us and that would be a breach of confidentiality so when it comes down to the matter common sense really needs to be used in such a situation. Naturally, I wouldn’t be impressed if it was found out that someone was faking and didn’t have a rheumatic disease that we as a community are always advocating about. Shame on anyone who IS actually doing this they will never understand the hurt they are causing to those of us actually trying to help others and make a difference in the world.

    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 wasnโ€™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 whoโ€™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 wasnโ€™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 wasnโ€™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 donโ€™t have to self inject and itโ€™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 doesnโ€™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?

    Itโ€™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 canโ€™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.

    Day 2 Whose your RD buddy? Perhaps you have a companion animal that makes RD tolerable or blanket/objects that help. #RDBlogWeek

    Day 2 Wildcard-Whose your RD buddy? Perhaps you have a companion animal that makes RD tolerable. Perhaps you have a woobie ( blanket, garment or stuffed animal) that helps you tolerate the pain. Tell us about the special object or animal that is your helper.

    My RD buddy is my sister’s dog Cruze he makes me feel at ease for either if I am hurting or on days I might feel anxious as well. Cruze the kelpie cross labrador is a special boy and I love him a lot as he has quite the calming effect on me.

    Cruze loves to play ball or play with anything you will throw to him he loves the company of people too and gets excited when a visitor arrives. Cruze absolutely adores his youngest sister Marlie(My niece) and is always so patient with her while he waits and she throws the ball. It makes me smile and makes me feel good when I see them playing together.

    I have many things that I use to try and help me such as an Acupuncture Mat, A Tens Machine, Sore no more cream, medication, volunteering online(supporting others helps me too), pain gone pen, Netflix(or equivalent streaming service)and iPod(as they make great distractions), massaging mat and massaging pillow, Heat Wrap, ice pack, Teddy bear to hug, Colouring Book, IPain Living Magazine and cooling strips because I often feel hot all the time.

    Everything above is my buddy I use everything at various times to break things up and have a variety of choices. Also my family and two besties are my buddy as well when I need to vent or need support it certainly makes all the difference. I also consider all the connections I have made since 2012(year of diagnosis of Rheumatic Disease RA) my RD buddy. #RheumaticDiseases #RDBlogWeek

    DAY 1-#RDBLOGWEEK how do other diagnoses impact your RD and its treatment?

    How other Diagnoses Impact my RD and treatment

    I Live with Rheumatoid Arthritis, Polymyalgia Rheumatica, Fibromyalgia, Spinal stenosis, Scoliosis and Migraine among other comorbidities.

    Sometimes I find it hard to differentiate one Rheumatic Disease from the other and I have neurological diseases aswell which could impact one over the other.

    I guess one could say if I have a Migraine with all the nasty symptoms that go along with it then I wouldn’t be able to have my Rheumatoid Arthritis Treatment which is an Actemra Infusion administered by IV every 28 days. If I get an infection like the flu I have to put off my infusion and wait until I am fully recovered and that can have a massive impact on the symptoms of the Rheumatoid Arthritis missing any treatment will put me in a flare.

    Spinal Stenosis in my neck can also bring on a Migraine and Rheumatoid Arthritis also can due to associated pain with each of the conditions.

    DAY 1 RDBlog week โ€“ Dealing With Other Diagnoses – RADiabetes

    DAY 1 RDBlog week โ€“ Dealing With Other Diagnoses – RADiabetes
    โ€” Read on www.radiabetes.com/day-1-rdblog-week-dealing-with-other-diagnoses/

    World Autoimmune Arthritis Day #WAAD18 #AIArthritisDay

    This year I am participating as a patient Advocate team in a virtual online car race with other Patient Advocates and Non profit orgs.

    The closing ceremony to announce the winner will be 1.30pm EST/USA May 21st on the https://facebook.com/AIArthritisDay/ Facebook page and then your top non profits and patient advocates will be announced with the top 3 winning a trophy.

    We will be raising awareness of Autoimmune Arthritis and Auto inflammatory Diseases with Arthritis as a major component.

    Be online any time during May 20th throughout all time zones (May 19th 6am EST/USA – May 21 5am EST/USA). Convert your time here:http://bit.ly/TimeandDateWAAD18

    Every ‘like’ or ‘share’ we get = 1 mile. Add an awareness poster or video to that post? = 10 miles. Host a party? 50 miles! The more creative with the posts the more awareness we can “drive”. The goal? Together, as a community, we drive at least 100,000 miles of awareness.

    IT WILL BE ON. If you would like to take the ride with me and earn mileage points as part of my team just share any of my posts and tag them #WAAD18 @unitedadvocacy for any mileage points to count. Together we can all make a difference and spread awareness all over the globe. My engine is revving and ready to go.

    Help me to win this race so we can win the trophy. You can do this all from Facebook, Instagram and Twitter I would appreciate anyone who would like to help with this.

    Facebook:http://facebook.com/unitedadvocacy

    Instagram:https://www.instagram.com/unitedadvocacyaustralia/

    Twitter:http://twitter.com/unitedadvocacyPick your platform and let’s put the pedal to the floor.

    Want to learn about World Autoimmune Arthritis Day and support your favourite nonprofits and Patient Advocate teams take a look who will be participating right here:www.WAAD18.org.

    I am in IPain Magazine’s #IPainPatientSpotlight section page 48 and 49.


    Hey everyone please check out the latest issue of#IPainLivingMagazinefree to view from the International Pain Foundation. Here is the link to the #IPainPatientPartnerSpotlight which is me on pages 48 and 49.

    Please take a look just tap or click the blue. ๐Ÿ‘‰Patient Partner Spotlight section of IPain Living Magazine

    After checking out the patient spotlight section scroll through from the ๐Ÿ‘‰beginning of the IPain Living Magazine Thankyou to the International Pain Foundation for featuring me in your #PatientPartnerSpotlight section and including the #RealLifeDiaries-Living with Rheumatic Diseases book aswell.<b
    you would like to purchase the book as a great resource for yourself or a loved one who lives with a Rheumatic Disease please do so her
    e
    http://amzn.to/2n5OSDv