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 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.

    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

    #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
  • Clinical Trials -@unitedadvocacy-Judy The United Advocate my thoughts.

    DISCLAIMER

    This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research. All thoughts below this disclaimer that I express are my own.

    I am Judy Advocate for Chronic Illness and Mental Health,Published Writer in Real Life Diaries-Living With Rheumatic Disease(Find it on Amazon,Contributor in #IPainLivingMagazine,#CureArthritis Crew Member for the Arthritis National Research Foundation,@AIArthritis Rep,International Pain Foundation(#IPain) Delegate,@Clara_Health Breakthrough Crew Member and WegoHealth Nominee in 2017 for best in show Facebook and Twitter. You can also find me here

    My social Media

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

    LinkedIn –http://linkedin.com/in/judith-flanagan-unitedadvocacyaust-3988a353

    Facebook –http://facebook.com/unitedadvocacy

    Pinterest –https://au.pinterest.com/UnitedAdvocacy/

    Twitter –http://twitter.com/unitedadvocacy

    YouTube:United Advocacy

    Snapchat –http://www.snapchat.com/add/dolphingirljudy

    WordPress –https://unitedadvocacyaustralia.wordpress.com

    Tumblr –http://unitedadvocacyaustralia.tumblr.com/

    WisDo-https://goo.gl/FBKubQ

    YouNow – https://www.younow.com/unitedadvocacy

    Periscope – https://www.pscp.tv/unitedadvocacy/follow

    Google Plus – https://plus.google.com/+UnitedAdvocacyAustralia

    Zubia Live- UnitedAdvocacy

    I live with Autoimmune/Inflammatory Arthritis(RA),Fibromyalgia Migraines,PMR and others listed on my header. I Advocate in support of all who live with any illness,I make my own graphics aswell as volunteering online to help create global awareness.

    • RA,
    • Fibromyalgia,
    • PMR
    • Migraines,
    • Hypertension,
    • Eczema
    • Scalp Psoriasis,
    • Scoliosis,
    • TMJDisorder,
    • General Anxiety Disorder,
    • Social Anxiety Disorder,
    • Agoraphobia,
    • T2Diabetes,
    • GastroEsophegal Reflux Disease(GERD)
    • Mild Spinal Stenosis

    As I am a member of the #breakthroughcrew with @ClaraHealth and I’m all about Awareness I’m very excited to have the opportunity to write this post about clinical Trials.

    I hope to one day take part in a clinical trial because if it could some day lead to a cure why wouldn’t I take part and be involved in something greater than I that could potentially save lives and make for a few less life changing diseases. If the trials eventually lead to a cure it makes sense right? #PatientsHavePower and together with researchers we could truly make a difference.

    I mean I understand the fears some people may have however if you are well informed and do your research, get any questions you may have answered you should generally be good to go and always communicate your concerns before,during and after any processes that take place.

    I live with multiple chronic illness’ and definitely wouldn’t want any member of my family or friends ever having anything that I live with so hopefully in this life time I can step up(get involved in a trial when the opportunity arrives),support and share info. Everything you need to know about clinical trials are right here check them out today. 👉🏼Clinical Trial guides

    Life can be hard but nothing would break my heart more if my nieces or anyone else had to live with such life changing illness’ and knowing that I could of done something to somehow help for future generations and it’s why I’m supporting clinical trials.

    I would love to wake up everyday and not have to be concerned with taking multiple medications whilst trying to go about daily life working around each condition that I live with and how it is affecting me. I and many other patients have to constantly factor in time management,possible journal writing,watching calendars,watching energy levels,fighting stigma and symptoms,practising self care and being super brave through all impending treatments and interactions.

    I truly admire all patients no matter what we live with. I never place any judgement on any individual. I personally believe that everyone should support one another no matter how severe one’s illness is because everyone’s body reacts or doesn’t react differently from 1 person to the next. What works for one individual doesn’t necessarily bring results for someone else.

    I’m definitely wanting to be the voice for anyone who feels they can’t and advocating and supporting patients,families,caregivers and other Advocates aswell as members of the medical community that want to work together with patients.

    If we all work together we can in the end create better outcomes for us all and make better informed decisions about our health care.

    I will always have hope it runs through me yes it runs deep but if I don’t have it then I would feel like I was empty.

    I have a strong will and I want to be an empowered patient I learn from Twitter Chats,Patient communities,amazing organisations relating to conditions that I Advocate for find them on the screenshot from my blog below.

    A big Thankyou to Clara Health for running this competition and every other person who lives with a disease that has no cure we are in this together and I’m determined this fight will one day be won. Remember #PatientsHavePower The choice is in our hands.

    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. 👉Patient Partner Spotlight section of IPain Living Magazine

    After checking out the patient spotlight section scroll through from the 👉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