#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

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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

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

DISCLAIMER

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

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

My social Media

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

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

Facebook –http://facebook.com/unitedadvocacy

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

Twitter –http://twitter.com/unitedadvocacy

YouTube:United Advocacy

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

WordPress –https://unitedadvocacyaustralia.wordpress.com

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

WisDo-https://goo.gl/FBKubQ

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

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

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

Zubia Live- UnitedAdvocacy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

World Autoimmune Arthritis Day #WAAD18 #AIArthritisDay

This year I am participating as a patient Advocate team in a virtual online car race with other Patient Advocates and Non profit orgs.
We will be raising awareness of Autoimmune Arthritis and Auto inflammatory Diseases with Arthritis as a major component. Earn Milage points for @unitedadvocacy by sharing my posts and using the hashtag #WAAD18 with @unitedadvocacy on your shares.

Simply post anything about awareness and use the hashtag #WAAD18. Every ‘like’ or ‘share’ you get = 1 mile. Add an awareness poster or video to that post? = 10 miles. Host a party? 50 miles! The more creative with your posts the more awareness we can “drive”. The goal? Together, as a community, we drive at least 100,000 miles of awareness.

Follow my accounts here to share anything I post on the 20th of May related to Autoimmune/Autoinflammatory Arthritis
Facebook:http://facebook.com/unitedadvocacy
Instagram:https://www.instagram.com/unitedadvocacyaustralia/
Twitter:http://twitter.com/unitedadvocacy
Pick your platform or use them all then let’s put the pedal to the floor.

This year I am participating as a patient Advocate team in a virtual online car race with other Patient Advocates and Non profit orgs.

The closing ceremony to announce the winner will be 1.30pm EST/USA May 21st on the https://facebook.com/AIArthritisDay/ Facebook page and then your top non profits and patient advocates will be announced with the top 3 winning a trophy.

We will be raising awareness of Autoimmune Arthritis and Auto inflammatory Diseases with Arthritis as a major component.

Be online any time during May 20th throughout all time zones (May 19th 6am EST/USA – May 21 5am EST/USA). Convert your time here:http://bit.ly/TimeandDateWAAD18

Every ‘like’ or ‘share’ we get = 1 mile. Add an awareness poster or video to that post? = 10 miles. Host a party? 50 miles! The more creative with the posts the more awareness we can “drive”. The goal? Together, as a community, we drive at least 100,000 miles of awareness.

IT WILL BE ON. If you would like to take the ride with me and earn mileage points as part of my team just share any of my posts and tag them #WAAD18 @unitedadvocacy for any mileage points to count. Together we can all make a difference and spread awareness all over the globe. My engine is revving and ready to go.

Help me to win this race so we can win the trophy. You can do this all from Facebook, Instagram and Twitter I would appreciate anyone who would like to help with this.

Facebook:http://facebook.com/unitedadvocacy

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

Twitter:http://twitter.com/unitedadvocacyPick your platform and let’s put the pedal to the floor.

Want to learn about World Autoimmune Arthritis Day and support your favourite nonprofits and Patient Advocate teams take a look who will be participating right here:www.WAAD18.org.

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

Real Life Diaries-Living With Rheumatic Diseases

Hi everyone if you get this book that I am one of the writers in would you leave us a review we(The writers within) would really appreciate it. I feel that this book could really help someone who lives with the conditions that are covered. It could also help loved ones who care for someone. It’s a great resource for anyone to own. There are tips,treatment options and more.

Real Life Diaries-Living with Rheumatic Diseases get it here ➡️ Real Life Diaries-Living with Rheumatic Diseases on Amazon

My Task 30 for #NERVEmber my last Nervember post for 2017 until 2018

HERE IS MY final Task my #NERVEmber

Task 30: What helps you relax and conserve energy? Take a picture or write a poem #PaintTheWorldOrange #GoOrange #iPain

All these things do as what I do doesn’t matter how fast it is done and it’s relaxing for me.

Getting creative with both Digital and non Digital creations.

Adult Colouring

Watching Netflix or other streaming services

Watching YouTube

Photography

Using my Fidget Spinner or Fidget Cube

Having cuddles with my niece’s they aren’t too rough they are always quite gentle.

Streaming Music on Emusic or Spotify

Watching my friends Barby Ingle,Ken Taylor and Shane Schulz on their shows either live if I can or catchup they are always a great shows.

I do like fishing and checking out different beautiful spots in nature.

Thankyou for following this if you have during the month of November.

my Task 29 for #NERVEmber

The above is just part of what’s in the full video

Task 29 #NERVEmber

Due to the length of my video I can’t fit it here so please go and see it via this link Thankyou

Follow this link to see the full video for my Task 29

Here is my #NERVEmber Task 29: Done in a creative way I have something special for you today. I have made a karaoke 🎤 video with words with #HopeIsTrue by #IPain and different style butterfly throughout. Please watch to the end and sing along whilst watching the butterfly.🎶 🎵 #IHaveTheNerveToBeHeard for all who live with #ChronicPain conditions.