#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

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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

#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)

    IPain Hero of Hope Finalist

    I am excited announce that I am a finalist in the 2018 iPain Hero of Hope Awards patient advocacy category. It’s the 1st year that voting is open to the public to decide the winners of each category. Please help support me by voting now!

    ๐Ÿ‘‰๐Ÿผhttps://internationalpain.org/heroes-of-hope

    Hero of Hope Patient Advocacy Category – The recipient is a pain patient who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy and pain conditions. This could be within the field of research, education, awareness, or patient assistance.

    You will find my picture(Shown here) and Bio in the Pdf below along with other great advocates that I am honored to be in the same category with.

    Patient finalists PDF๐Ÿ‘‰๐Ÿผ https://internationalpain.org/wp-content/uploads/2018/08/HOH-Finalists-2018-Patient-a.pdf.

    Thankyou in advance if you do send a vote my way much love to all. ๐Ÿ˜ #HopeIsTrue

    Upcoming Event Shades For Migraine June 21

    On June 21st people around the globe will come together in solidarity for #ShadesForMigraine. Both people who live with Migraine aswell as people who don’t will join forces in support of all who do. On June 21 please join me as I pop on some shades in a place I wouldn’t normally wear them for example even inside because many of us who live with Migraine do wear them inside die to light being a major trigger.. I am 38 years old and have lived with this neurological disorder which is Migraine since the age of 7 years. everyone please show you care and wear a pair because that’s 31 years and it’s 31 years too long.