#30ThingsMeme about my Invisible Illness You May Not Know



#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 I’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 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

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.

©@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 🙂


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 I’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 wasn’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. I’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 🙂 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

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
(2014  GORD and TMJ)

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

4. The biggest adjustment I’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 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

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 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 I’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 wasn’t feeling well was: let me sleep

29. I’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 🙂

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

IPain Living Magazine

Checkout all the fabulous contributors including myself there are some great articles in here. Checkout page 50 and 51 for my article about Apps for The Chronically Awesome. 2017 is definitely my year I am also participating in another writing project this year and can’t wait until it all comes together.

READ HERE:http://magazine.internationalpain.org/books/ygld/mobile/index.html
Thankyou to all who checkout this great Magazine 🙂

Sign up for Project for 2017 

I will be contributing my story to  book next year, titled: Grief Diaries: Living with Rheumatic Disease. The book project begins in January. Here is the link, if you are interested in contributing. You will have to place an order, but it costs nothing to be a contributor. http://shop.griefdiaries.com/products/rheumatoid Feel free to pass this along to anyone you feel, might be interested.

My #NERVEmber #PaintTheworldOrange creations so far Part 1 2016


#ShareHope #NERVEmber #PaintTheWorldOrange #IHaveTheNerveToBeHeard #DoYouHaveTheNerveToBeHeard? #IPain #MakeADifference #AwarenessMatters #NERVEPainAwarenessMonth #SupportCRPSCOMMUNITY #ChronicPaincommunity #United4Awareness #StopTheBurning #Hope4ACure #PopSuperAdvocate #Painpop #HopeIsTrue #UnitedWeStand#RheumatoidArthritis #TMJDisorder #Migraines #FIBROmyalgia and 150 plus other conditions #CompassionISTheFashion #SupportTheWorld


​​​​All creations made by me Judy from @UnitedAdvocacy Australia

Find me on Twitter,Instagram,Pinterest,

Facebook,Tumblr,LinkedIn

Head to http://nervember.org to learn about what NERVEmber is

#NERVEmber 2016

This Month I will be Participating in Tasks from the #Ipain Foundation raising awareness of Nerve Pain conditions #NERVEmber #PaintTheWorldOrange #MakeADifference

Wear Orange because Orange is the colour for conditions with Nerve Pain as a Symptom #LETSDoThis #AwarenessMatters

#PopSuperAdvocate

#NERVEmber is here #NERVEpain Awareness Month #PaintTheWorldOrange #IPain #IHaveTheNerveToBeHeard #DoYouHaveTheNerveToBeHeard? #MakeADifference #IPainPop #PopDelegate #PopAdvocate #HopeisTrue #StopTheBurning

Checkout http://Nervember.org

Take Action Arthritis-A letter to the Members of Parliament in Australia from Judy- RA patient.

Arthritis is a big problem in Australia. It affects nearly four million people of all ages, including 6,000 kids. 

I live with Rheumatoid Arthritis a Chronic Inflammatory Autoimmune Disease.

Arthritis is among the leading causes of chronic pain and disability and it costs the health system more than $5.5 billion a year.

Yet too many people with arthritis are struggling to cope with their condition. We need programs to provide better care and support, but people with arthritis are too often overlooked and ignored and left to cope with their condition alone.

As someone with arthritis, I can speak from personal experience. 

  • I live with chronic Pain(from the Rheumatoid  Arthritis and also Fibromyalgia which affects me from head to Toe),
  • Daily Fatigue,
  • Stiff joints
  • Dry Eyes,
  • Blurred Vision
  • Flu Like Symptoms,
  • Brain Fog(Cognitive Dysfunction),
  • Fever,
  • TMJ(Tempormandibulor Joint Disorder)
  • Gastroesophagal Reflux Disease(GORD),
  • Anemia,
  • Inflammation,
  • Swelling
  • High Blood Pressure
  • skin Rash
  • Nausea
  • Weight changes

The Autoimmune form of Arthritis that I live with can also affect the organs of the body. 

Apart from the Arthritis component Rheumatatoid Arthritis is part of a more complex Disease including many other symptoms as I have listed above. 
Myself and other patients living with these diseases of all forms of Arthritis (there are over 100) need more comittments from the governments of this country to help and support us.

Please commit to:
1) Funding specialist nurses to provide care and support to the 1.4 million Australians with inflammatory and auto-immune forms of arthritis

2) Programs to support better care for people with osteoarthritis. These programs will actually help to save the health system money.

3) Boost arthritis research. Government funding for arthritis research is lower than, and falling behind, research funding for other major chronic conditions. There is no funding at all for research into juvenile arthritis

My question is MP’s of Australia Will you commit to better support for people with arthritis?

To my readers who live with Arthritis please follow the link and  add your personal parts to the letter then email to your local MP’s ➡️Take Action #Speakup4Arthritis #MakeADifference #GetourVoicesHeard #ChronicIllnesscommunity

#ArthritisAustralia


Rheumatoid Awareness Day Blog Challenge Fact #5 – Rheumatoid Arthritis Disease is often an Invisible Illness. #THEREALRD

Today is February the 2nd here in Australia #RheumatoidAwarenessDay and I am taking part because I myself live with Rheumatoid also known as Rheumatoid Arthritis.

Arthritis is just one symptom Rheumatoid Disease causes many Widespread symptoms affecting both inside and outside the body.

Rheumatoid Arthritis Disease is our own Immune System attacking itself.It affects everyone differently and is often an Invisible Disease meaning people may often think we are fine  simply because we look it.

Looking fine is what people see but feeling fine is often not the case at all.

Rheumatoid Disease(Rheumatoid Arthritis) is a chronic and Autoimmune systemic Illness affecting many patients worldwide.

Aswell as chronic joint pain it also causes:

  • Fevers
  • Swelling
  • Brain fog
  • Weight Loss or Weight Gain
  • Appetite Loss
  • Dry Eyes
  • Being more prone to infection
  • Inflammation
  • Low Red/White Blood Count
  • Depression
  • Pleuritis
  • Heart Damage
  • Dry Mouth
  • Firm Lumps called Rheumatoid Nodules
  • Muscle Wasting
  • Morning Stiffness
  • Oral Health Issues
  • Anemia
  • Shortness of Breath
  • Blocked/Hardened Arteries
  • Nerve Compression
  • Bone Loss
  • Joint Deformaties
  • Chest Pain
  • Skin Damage
  • Lung Scarring

and a lot of other complications which include side effects from the Medications many of us take daily.

 

So to end my post today I will leave you with something to think about that Rheumatoid Arthritis (Disease) is MORE THAN ARTHRITIS to the patients who live with it everyday because in some cases due to complications it has also caused death.

So next time u see someone and u think to yourself “They Don’t look sick”or “They look fine”

think again my friends because there is more to it then meets the eye.
 ©UnitedAdvocacyAustralia ↕️

Suffering the Silence Postcard Awareness Campaign for Invisible Illness Week 28th September to 4th October.

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http://postcard.com/impact/break-the-silence-and-fight-for-invisible-illness-awareness

Please join the Suffering the Silence community in the fight to raise awareness around those suffering from invisible and chronic illnesses.

To commemorate Invisible Illness Awareness Week (September 28th – October 4th, 2015) we want to bring all of your portraits and stories to life. Imagine our faces lining the streets together, demonstrating the incredible number of people affected by invisible illnessaround the world. With your contributions to this project, we will create alive display on the streets of New York City to shed light on our #InvisibleFight.

Here’s how to get involved:

Upload your #SufferingtheSilence portrait and share a quote breaking the silence and stigma that surrounds invisible illness.  If you have already submitted your portrait –upload the same photo! If not, please join in! We will use your photo and message to create a physical postcard, which will be displayed and photographed at the site of the original #SufferingtheSilence portraits in NYC!

Don’t have an invisible illness?  Stand as an ally with this community, and upload your own photo and message of support to be included in the display!

Five Things I have Learned #RABlog Week Day 4

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1. I have learned that I am stronger than I Give myself credit for sometimes why because we have no choice but to be strong in certain situations but we also know there’s support groups we go to when we struggle too.

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2. I have learned that I won’t always get the kind of support I feel like I need sometimes but that’s ok I have dealt with it. 

The kind of support I am and have always wanted was to have a person come with me to appointments to help recall important information or take notes for me.

To have that one person to be that extra special person who could take in everything said to me via my medical team as I know at times I absolutely forget things. #BrainFog moments.

3. I have learned that there are so many reasons to be grateful and the main one of course is being alive.

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4. I have learned that having Chronic Illness’ RA being one of can be really lonely because I think people don’t know what to say to you or how to help you feel better.

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5. I’ve learned that yes I have made many new friends in the chronic Illness community and that they are some of the most compassionate beautiful people I have come into contact with. We have an understanding of one another and pass no judgements because we have much of the same symptoms and issues within our lives.
I don’t fancy myself as much of a writer but it does help writing things down or blogging.

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