#30ThingsMeme about my Invisible Illness You May Not Know

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#Invisibleillnessweek #IIWK16 #MyinvisibleFight #Thisischronicillness #Thisisinvisibleillness

The illness‘ I live with are:

  1. Rheumatoid Arthritis,
  2. Fibromyalgia,
  3. Polymyalgia Rheumatica,
  4. General Anxiety Disorder,
  5. Agoraphobia,
  6. Social Anxiety Disorder,
  7. Migraines,
  8. Tempormandibulor joint Disorder,
  9. I also have Hypertension and GERD


2. I was diagnosed with it in the year:

1987 (Migraines)

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

2012(RA)

2013 (Fibromyalgia and Hypertension

(2014  GORD and TMJ)

3. But I had symptoms since:1987 (Migraines)2010(RA and Fibro)

4. The biggest adjustment Iโ€™ve had to make is: Not being able to once do what I used to.struggling day to day with tasks taking Medications, and chronic fatigue which is a lot to deal with as it’s more than just being tired so a nap doesn’t really help most of the time. My blood pressure is also been a big issue too it’s a constant battle trying to get it right.

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 in the hopes there are some more compassionate people in the world like myself.

#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 couldnโ€™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

10. Each day I take many pills & vitamins  including Chemo treatments in pill form and no they aren’t as strong as cancer treatments but patients do have to take for the rest of their life unless a cure is one day found. I support everyone no matter what illness they may have #Support and #Awareness is a must. #Hope4ACure



Once a month I also have an infusion Treatment called #Actemra(No comments, please)#Methotrexate #ChronicIllness The infusion is to prevent further joint damage or any other damage.


11. Regarding alternative treatments I have tried with regards to diets or different approaches to eating/massage aswell.

12. If I had to choose between an invisible illness or visible I would choose: Visible because at least you may not be doubted but ideally   not having to choose at all would be even better cause some days are just pure hell.

13. Regarding working and career: I am on Disability may be able to work from home doing either health Advocacy or photography. I like to create my own graphics some examples are throughout this post.

ยฉ@DolphingirlJudysPassionPhotography aka Me


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.. #Introvert

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


16. Something I never thought I could do with my illness that I did was: Reach out to others because of my life long 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.

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. #Brainfog

20. A new hobby I have taken up since my diagnosis is: Card Making crafts and Adult coloring


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 and I would also love to meet some International Foundation for Autoimmune Arthritis friends and Blue Ribbon Project Cathy and Mindy and also the Arthritis National Research Foundation Crew ๐Ÿ™‚


22. My illness has 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.


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 and enough is enough. It’s so not true 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.

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 world.

24. But I love it when people: Show support and care about each others causes because together we can all make a difference no need for judgement that gets nobody anywhere. Love don’t hate we don’t need hate nobody does.

25. My favorite motto, scripture, 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 Iโ€™d like to tell them: You are not alone I’m here for you if u ever need to talk.

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

28. The nicest thing someone did for me when I wasnโ€™t feeling well was: let me rest like for example especially during a migraine attack like my sister has done because she knows how awful they are. I love my family.

29. Iโ€™m involved with Invisible Illness Week because: I was chosen by a lovely lady by the name of Lisa Copen who added me as part of a top squad invisible Illness group of Advocates ๐Ÿ™‚ 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 http://facebook.com/unitedadvocacy

30 Things About My Invisible Illness You May Not Know

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image30 Things About My Invisible Illness You May Not Know

#Invisibleillnessweek #IIWK15 #MyinvisibleFight

1. The illness I live with is: Rheumatoid Arthritis,Fibromyalgia,Polymyalgia Rheumatica,General Anxiety Disorder,Agoraphobia,Social Phobia,Migraines,TMJ Disorder, I also have Hypertension and GORD.

2. I was diagnosed with it in the year:
1987 (Migraines)
1996 (Anxiety Disorder but have had the anxiety since childhood),Social Phobia diagnosed but had since childhood and Agoraphobia)
2012(RA)
2013 (Fibromyalgia and Hypertension
(2014ย  GORD and TMJ)

3. But I had symptoms since:1987 (Migraines)2010(RA and Fibro)

4. The biggest adjustment Iโ€™ve had to make is: Not being able to once do what I used to and struggling day to day with tasks and taking Medications.

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. #MyinvisibleFight #InvisibleIllness

6. The hardest part about mornings are: Moving and still being fatigued throughout the day.

7. My favorite medical TV show is: House

8. A gadget I couldnโ€™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

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

10. Each day I take many pills & vitaminsย  including Chemo meds that I have to take for the rest of my life unless a cure is one day found. Once a month I also have an infusion Treatment called #Actemra(No comments, please)#Methotrexate #ChronicIllness

11. Regarding alternative treatments I have tried with regards to diets or different approaches to eating.

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 a pure hell.

13. Regarding working and career: I am on Disability may be able to work from home doing either health Advocacy or photography.

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.

16. Something I never thought I could do with my illness that I did was: Reach out to others because of my life long Anxiety but I am super proud of myself for doing so I have really come a long way.

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

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

21. If I could have one day of feeling normal again I would: Dance like nobody is watching and get my fitness on.

22. My illness has taught me: That I have to live in the moment because no day is the same especially when it’s chronic.

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 and enough is enough. It’s so not true 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.

24. But I love it when people: Show support and care about each others causes because together we can all make a difference no need for judgement.

25. My favorite motto, scripture, quote that gets me through tough times is: Together we can make a difference.

26. When someone is diagnosed Iโ€™d like to tell them: You are not alone I’m here for you if u ever need to talk.

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.

28. The nicest thing someone did for me when I wasnโ€™t feeling well was: let me sleep

29. Iโ€™m involved with Invisible Illness Week because: I was chosen by a lovely lady by the name of Lisa Copen who added me as part of a top squad invisible Illness group of Advocates ๐Ÿ™‚

30. The fact that you read this list makes me feel: Special and loved because you took the time to care.

Let me know you read this to the end via my Facebook page http://facebook.com/unitedadvocacy

Blog For World Peace

Today is World Peace Day #BLOG4Peace

Dona Nobis Pacem (Latin for Grant Us Peace)

I will always choose peace โœŒ๏ธ๐Ÿฅฐ๐Ÿค—โœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธโœŒ๏ธ๐Ÿ™‚๐ŸŒธ๐ŸŒผ๐ŸŒธ๐ŸŒผ๐ŸŒธ๐ŸŒผ๐ŸŒธ๐ŸŒผ๐ŸŒธ๐ŸŒผ๐ŸŒธ๐ŸŒผ๐ŸŒธ๐ŸŒผ Share the light get some sun peace and love for everyone. What ever you do today and any other day make it for peace because there is already too much of the alternative and only us the individuals of the world coming together can change that.

Day 5 prompt 5-Advice for Newly Diagnosed Self

What advice would you give to your newly diagnosed self after what youโ€™ve learned living with RD?

  • Pace yourself don’t try doing everything all at once.

    • If you get any new symptoms note them down and report to your rheumatologist.

    • Find support whether through family, online support or support groups locally because you can’t do it alone and supporting one another makes it so much easier.

    • Not everyday will be the same you will experience some days still with pain but not as painful as other days which is you will need to find your tribe.

    • You will trial different treatments to determine what works best for you. Some treatments won’t help at all and others will help slow the progression of your Rheumatic Disease.

    • You will have people from all walks of life telling you to do this or don’t do that. Everyone is different and when it comes down to the matter at hand you will do what works best for you.

    • You will need to be careful around people with the flu as you have a compromised immune system that is fighting your body and you will be prone to infection.

    • You will need to protect yourself from the sun as you are now at a higher risk for getting skin cancer and must take extra care. Your Rheumatologist will inform you of the risks.

      You may find your self needing to purchase some aids to help you whether it be a walking stick, electric can opener, A grabber, A shoe horn, A jar opener, An electric potato pealer or a zip pull these items will help to make your life easier as someone living with Rheumatoid Arthritis or any other Rheumatic Disease.

    Finally I will leave you will a list of wonderful online non profits and org’s which will be great resources to help you while living with your condition. Let’s face it none of us asked for this but we can at least have help and support if we have to live with it.

    • Creakyjoints

    • International Pain Foundation

    • The International Foundation for Autoimmune and Autoinflammatory Arthritis

    • The Arthritis National Research Foundation

    • The US Pain Foundation

    • The Invisible Disabilities Association

    • Chronic Pain Australia

    • Euler-European League Against Rheumatism

    • The Anerican College of Rheumatology

    • HealtheVoices

    • The Savvy Cooperative

    • The Arthritis Foundation

    • The Blue Ribbon Project

    • Clara Health

    • WEGOHealth

    • Mental Health and Invisible Illness Resources

    • Rheumatoid Patient Foundation

  • I would like to thank @RickPhillips from radiabetes.com for hosting #RABlogWeek these past 5 years. He has done a fantastic job and I for one truly appreciate it thanks for being awesome. I have enjoyed connecting with others and reading various blogs.

    #RheumaticDiseases

    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/

    #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 โ€“ Is there something we missed in this yearโ€™s prompts?ย  This wildcard is your place to add it in.ย  Not everything made our list so be adventurous and take us in a new direction.ย  Sometimes the everything wildcard is the seed of a new prompt for next year so let your mind roam and see where it goes.ย  Maybe mindfulness is on your mind?ย  Or perhaps you have a funny story? ย 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
  • #RDBlogWeek Prompt 4-Research

    โ€ข Thursday September 27, 2018

    Research โ€“ Do you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced to using research about Rheumatic Disease.

    Incorporation of Research into my own Disease Management.

    I haven’t had Alot of experience when it comes to research at the moment the only research I have been apart of is with regards to online or via app usage like CreakyJoints and Arthritis Power and the tracking of symptoms,mood changes,Weather changes,Food,Fatigue levels etc.

    I am involved with orgs or companies such as The International Foundation for Autoimmune and Autoinflammatory Arthritis who are huge leaders working and collaborating when it comes to Research.

    Check out the Act II Project (ACT) stands for A Community Team๐Ÿ‘‰๐Ÿผ https://www.aiarthritis.org/ACTII

    I love the work that they do and recently I became a VIP(A vocal Impact partner because I truly support the mission and everything that they stand for see the Mission,Vision and goals here ๐Ÿ‘‰๐Ÿผ https://www.aiarthritis.org/mission#OurMissionandValues

    I have been a Representative of IF_Aiarthritis since 2013.

    See here how you can use your voice to impact change๐Ÿ‘‰๐Ÿผ https://www.aiarthritis.org/vocal-impact and once you have checked out all above maybe you too might like to consider becoming a VIP(Vocal Impact Partner). Read about what it means to be a VIP and the benefits here ๐Ÿ‘‰๐Ÿผhttps://www.aiarthritis.org/VIP.

    How and what differences research has made or can make.

    Tracking of symptoms is a good one and how different weather patterns affect the conditions I live with not just with regards to my Rheumatic conditions but also my neurological Migraine condition. It is good to track different foods too to see how they affect you. Everyone is different and what may affect one patient it may not affect another at all therefor I fully support Research otherwise how else would we truly learn about advances,changes,things that do work or things that don’t.

    To be be honest I wouldn’t be here writing this Blog if it wasn’t for research.

    A barrier maybe location for me I don’t live in or near the cities and the opportunity hasn’t really arose for me but since I do fully support research and Clinical Trials aswell I am part of the #BreakthroughCrew with Clara Health.

    I am also a cureclick Ambassador and a SavvyBassador as well as a savvy cooperative member where opportunities to participate online or in person can become available to me simply by checking out weekly Gigs and or the viewing of the websites from

    Clara Health: ๐Ÿ‘‰๐Ÿผhttps://www.clarahealth.com/

    or

    Cureclick: ๐Ÿ‘‰๐Ÿผhttps://www.cureclick.com/

    If you would like to join please use my Link to join the Savvy Cooperative it’s free to join the website where you can participate in Gigs potentially leading to research opportunities where you choose what suits you. You can also be involved in discussions,take part in a Forum,Earn rewards,learn about updates regarding the Savvy Coop and also choose to become a Pioneer owner of which you buy a small share and based on your activity you will receive a share in the profits at the end of the year.(remember it is free to join and participate in Gigs and everything else on the website where you will receive badges on your profile as you progress.)

    Lastly I will leave you with this that #PatientsHavePower never agree to anything you aren’t comfortable with in regards to research or clinical trials and always consult with your medical team to see if something may be of benefit to you. You have the power your Health is in your hands,make an informed decision with all information you have its all up to you.

    -Judy The United Advocate #Breakthroughcrew Member and #Savvybadsador

    #RDBlogWeek Prompt 3-Mindfulness

    Wednesday September 26, 2018

    Mindfulness โ€“ What does mindfulness mean to you and how can it help as we live with our autoimmune condition?

    Pretty much to me Mindfulness means to live in the moment,to try just focus on the present. It’s feeling each feeling,recognizing and paying attention to an exact moment or feeling and accepting as well as acknowledging and being more aware.

    Mindfulness can be a form of meditation,a guided voice like listening to a calming sound like waves or simply adult colouring. It can be audio or breathing exercises Russ Harris has a few. Mindfulness exercises can be really good when you need to feel centred and you need to practise them it may feel funny at first just keep at it these things take time. I speak from experience my therapist even gave me some guided meditations a few years ago which I have on my iPod.

    Mindfulness is like defocusing from the clutter that is all around us and the clutter that is in our minds and instead focusing on what’s directly in front of us or direct surroundings.

    Mindfulness can help us with Autoimmune Conditions in those times when we feel stressed you find many free resources online in written,visual and audio formats and because they are free what have we got to lose it can’t hurt.

  • I will leave you with some resources and if anyone has any resources they would like to share please do.
  • ๐Ÿ‘‰๐ŸผFree downloads from the Mindfulness dot org website.
  • There are downloads/info for
    • guided Mindfulness,
      breathing exercises,
      Body Scan exercises,
      Sitting meditations,
      guided imagery exercises and
      self guided exercises
  • Acceptance commitment Therapy uses Mindfulness ๐Ÿ‘‰๐Ÿผhttps://www.actmindfully.com.au/about-act/
  • Resources from Russ Harris ๐Ÿ‘‰๐Ÿผhttps://www.actmindfully.com.au/free-stuff/worksheets-handouts-book-chapters/
  • The reality slap๐Ÿ‘‰๐Ÿผ https://www.actmindfully.com.au/upimages/The_Reality_Slap_-_Introduction_&_Chapters_1_and_2.pdf

    The Happiness Trap๐Ÿ‘‰๐Ÿผ

    Link ๐Ÿ‘‰๐ŸผAudio,Podcasts and Radio by Russ Harris

    Link๐Ÿ‘‰๐ŸผFree Russ Harris Videos

    #RDBlogWeek Prompt 2-Tips

    Tuesday September 25, 2018

    Tips โ€“ How do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.

    Staying Fit

    When living with multiple chronic illnesses such as Rheumatoid Arthritis and Fibromyalgia it’s quite difficult but there are ways to get some exercise in you just find what’s suitable for your conditions.

    There are exercises such as Thai chi,chair yoga,,Aerobics step,arm weights or hydro exercise in a pool which means you aren’t putting any weight on your joints.

    You can also do some gentle stretching exercises,use a chair gym and use a vibration machine.

    Coping with Stress and Relaxing

    I cope with stress in many ways such as

    • going for a light walk,
    • listening to music,
    • watching a movie,
    • texting a friend,
    • colouring in my colouring books,
    • doing craft such as card or jewellery making,
    • making digital collages,
    • doing guided meditations,
    • Playing card games
    • Playing with my fidget spinner
    • Playing with my fidget cube
    • having a massage
    • Head out in nature with my D3200 SLR
    • Having a nice bath or having a nice hair cut
      hanging out with animals My secrets for the best life possible
    • Be honest
    • be creative,
    • live
    • love
    • learn
    • Be kind
    • Support others
    • Listen and appreciate others
    • Do things that make you happy in life
  • we may not be able to do what we once could or do activities for as long just do what you can that’s what matters.
  • just have a go it doesn’t matter if for 5 minutes or for hours you do what’s suitable for you.
  • RDBlogWeek Prompt 1-The Medicine

    Monday September 24, 2018

    The Medicine โ€“ Patients with autoimmune disease often are not treated well by Doctors and Pharmacists when we ask for or receive prescription pain medicine.ย  What has been your experience?ย ย  Share the good, bad and ugly side of your experience.

    Above image is the Gerd medication on the Pharmaceutical Benefit Scheme which would cost me just $5.50 and holds 30 tablets so would last me a month.

    have to say I haven’t really had many bad experiences with my medicines in relation to chemists and doctors only in relation to my GERD medication which was on a government scheme and then I was told I was getting reduced from 20mg to 10mg and I was told by the chemist that I now have to pay full price which is not my chemists fault it was my doctors. Anyway I have decided to ask my doctor next time I see her that I need her to put me back back to 20mg because I need to be on the government scheme and I cant deal with not taking my GERD medication if she doesn’t put me back on the 20mg instead of the 10mg. I need the mediation because nothing else works for me so why fix something that isn’t broken when Ive tried everything else.

    I know others in our communities have major issues with the medications that they need and my heart truly breaks for them as these people depend on these medications to give them a better quality of life.

    This over the counter medication that the doctor put me on but I was told script not required cost me almost &20.00 and only has 14 tablets in it which means within the month I would need to purchase 2-3 boxes which would then cost me from $40 to $60.00. (To me it makes sense to stay on other medication that is on the Pharmeceutical Benefits scheme)