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.

    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

    30 Things About My Invisible Illness’


    Purchase the Book here Buy the Book on Amazon.

    Every Year I usually participate in Invisible Illness Awareness Week however this year that event was cancelled and this year I am posting the 30 Things about my Invisible Illness post for Invisible Disabilities Week Oct 15th-21st

    This post is written each year in order to evaluate and see any changes that there may be.

    30 Things about my Invisible Illness’

     #IDW17

    #InvisibleNoMore

    #InvisibleDisabilitiesWeek

    #SeeTheInvisible
    1. The Invisible Illness’ I live with Are:

    • Rheumatoid Arthritis,
    • Fibromyalgia,
    • Polymyalgia Rheumatica(Rare Disease),
    • General Anxiety Disorder,
    • Agoraphobia,
    • Social Anxiety Disorder
    •  Scoliosis,
    • Migraine,
    • Psoriasis,
    • Tempormandibulor joint Disorder, 
    • Diabetes(updated condition 2017) 
    •  Hypertension(High BP) and 
    • GERD  

    2. I was diagnosed with them in the year:

    1987 (Migraine)

    1996 (Anxiety Disorder but have had the anxiety since childhood),Social Phobia diagnosed but had since childhood and Agoraphobia)

    Hypertension I’m unsure of the exact time that began but my sister has more of an idea about incidents of being in an ambulance which I don’t remember so there you go. Apparently the Ambo treating me was a little freaked out by my BP and how high it was and said “that can’t be right” for the age I was.

    2012(RA)

    2013 (Fibromyalgia)

    (2014  GORD and TMJ)

    (2017)Diabeties

    (2017) Psoriasis

    3. I had symptoms since:1987 (Migraine)2010(RA and Fibro) others just came along.

    4. The biggest adjustment I’ve had to make is: Not being able to once do what I used to but I’ve adjusted to my new normal and struggling day to day with tasks taking Medications as well as chronic fatigue which is a lot to deal with as it’s more than just being tired.A nap doesn’t really help most of the time. Also not being able to see friends and family as often as I’d like.

    5. Most people assume: That I look well but truth is i’m not but I still say thanks and take it as a compliment because they aren’t to know that’s why I am an Advocate to make these diseases visible and bring them out of the shadows. I say things better how I feel when I’m writing or making graphics as I struggle with words face to face. #MyinvisibleFight #InvisibleIllness. Most of the time I smile through the pain and take each day as it comes because it can truly change in an instant.

    6. The hardest part about mornings are: Moving and still being fatigued throughout the day. I am often nauseous a lot too and sadly I have become accustomed to it. 

    7. My favorite medical TV show is: House other than that I don’t really watch shows of a medical nature.

    8. A gadget I couldn’t live without is:My Ipod classic cause it fits thousands of songs on it and helps me to relax. Problem is though I can’t turn my music up loud because loud music is a trigger for my migraines #Phonophobic #photophobic I also enjoy the occasional Netflix and bigpond movies.

    9. The hardest part about nights are: Getting enough sleep or getting to sleep #Thestruggleisreal #Fatigued #Painsomnia

    10. Each Day I take many Medications and vitamins: including a Biologic treatment given via infusion. #Hope4ACure

    I am also on #Methotrexate

     The infusion is to prevent further joint damage or any other damage at the very least to slow the progression of the disease.

    11. With Regards to alternative treatments:

    I have tried diets and different approaches to eating,I have tried massage aswell. I have an acupuncture mat and a tens machine too.

    12. If I had to choose between an invisible illness or visible I would choose: Visible because at least you may not be doubted not having to choose at all would be even better cause some days are pure hell and I wish for nobody to have any illness.

    13. Regarding working and career: I am on Disability due to the unpredictability and many issues that come from living with these diseases. Having said that I am a volunteer online and enjoy many things including writing.

    14. People would be surprised to know: I like to spend alot of time on my own or maybe that’s not so suprising I don’t know..

    15. The hardest thing to accept about my new reality has been: The constant Fatigue and daily chronic pain.The battle with my BP has been hard too.

    16. Something I never thought I could do with my illness that I did was: Reach out to others because of my life long social Anxiety but I am super proud of myself for doing so I have really come a long way. I love the people who I have become friends with because we all support each other.

    17. Advertisements about my illness always: portray that once u take meds you could basically run a marathon so not true though and it really upsets the community that’s for sure. 

    18. Something I really miss doing since I was diagnosed is: Doing more activities with my nieces they mean the world to me and they are my reason for being here and they bring me much joy.

    19. It was really hard to have to give up: My studies in IT and Web Design. Cognitive issues have been a big issue and was unable to continue.

    20. A new hobby I have taken up since my diagnosis is: Card Making crafts and Adult coloring and writing I have written for a book called Real Life Diaries Living With Rheumatic Disease which was released this world Arthritis Day 12th October 2017.

    21. If I could have one day of feeling normal again I would: Dance like nobody is watching and get my fitness on. I would also travel a lot more and to further places in distance I haven’t been. I really want to travel to the USA to meet IPAIN Foundation friends Barby Ingle and her Husband Ken(Sweet yes a real life Barby and Ken They Rock)and I would also love to meet some International Foundation for Autoimmune Arthritis friends and Blue Ribbon Project friends Cathy and Mindy and also the Arthritis National Research Foundation Crew 🙂 I would also love to meet #Dazzle4Rare coordinator and #hesaonline org volunteer Kimberley because she is a strong Advocate for #RareDisease Awareness and I have been happy to take part since #Dazzle4Rare began in 

    22. My illness’ have taught me: That I have to live in the moment because no day is the same especially when it’s chronic. I can be fine one day then a total mess the next #ChronicLife that’s just how it is #MynewNormal I’ve accepted it and can’t change what is I can’t control I can only manage with my healthcare team and myself.

    23. Want to know a secret? One thing people say that gets under my skin is: You only go online to be part of the pity train(NEWSFLASH to anyone who says this it’s not about pity it’s about Awareness and understanding.

     I also hate so and so has it worse WELL you what it’s not a competition it’s about just being a certain person and I for 1 am gonna be that a person which is a caring and compassionate human being I don’t care if u hurt a little or a lot I SUPPORT u and I have your back. 👌 

     I just believe that we all need to support each other in our times of need and if we did the world would make for a better place that’s why I created United Advocacy. There’s enough hate in this world and I for one am sick to death of it.

     I just want to support everyone so they don’t feel alone no matter what illness someone lives with. 

    I volunteer with non profits around the world and support patients and organisations working together to provide resources aswell as awareness about various illness’ I really enjoy being involved in projects from non profits around the globe. 

    24. I love it when people: Show support and care about each others causes because together we can all make a difference no needforjudgement that gets nobody anywhere.

    25. My favorite motto, scripture or quote that gets me through tough times is: Together we can make a difference. Show u care and spread love not hate.

    26. When someone is diagnosed I’d like to tell them: You are not alone I’m here for you if u ever need to talk and I have your back #WEGOTTHIS and we are #StrongerTogether

    27. Something that has surprised me about living with an illness is: The amount of people who have connected with me and the new friendships I have made. #ChronicallyFabulous #Spoonies #UnitedTogether #PeoplewithPainMatter

    28. The nicest thing someone did for me when I wasn’t feeling well was: let me rest especially during a migraine attack or when I am flaring.

    29. I’m involved with Invisible Illness Week and/or invisible Disabilities week because: I think it’s fabulous that we all come together like this as part of a global community #MakingaDifference.

    30. The fact that you read this list makes me feel: Special and loved because you took the time to care. Thanks so much if u have read to the end bless you it means a lot.

    Let me know you read this to the end via my Facebook page and let’s unite.