My Task 8 For #NERVEmber

#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

30 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

RA CreakyJoints Webinar

Hello out there fellow RA patients and my readers.

Today I attended an important Webinar listening to some audio regarding Knowing your options and making informed decisions about RA treatments.

Listed below are the speakers and thenfollowing that are my notes from the session.

I hope you all find something that may help.

Dr Laurie Fergusson-Health Psychologist.
Matt Iseman-RA Patient and Comedian.
Rebecca Callis-Certified Board Rheumatologist

Here are my notes from the Webinar

Early Treatment is important as it slows down the progression of the Disease Activity in RA. It can prevent further joint Damage.

Treatments will not reverse Joint Damage.

Medications and Biologics help reduce Active disease activity but doesn’t
elliminate it 100%. It can take 3 to 4 months to see if any improvement when trying a medication.

When starting an injection treatment you will be trained by a healthcare provider.

When disposing of needles dispose of them safely in a sharps container

Set some treatment goals, work together with your Rheumatologist and other Health care Professionals to figure out what works best for you so your Disease can be better Managed.

Be honest with your Rheumatologist tell them when a treatment isn’t working then they can give you the best care needed.

Keep a symptom Tracker if you have trouble remembering.

What works for one patient doesn’t mean it works for all so keep trying and don’t be disheartened if your first Medications don’t work. Just discuss your symptoms with your Rheumatologist and change your treatment regime.

The most common Medication for Treatment of RA is Methotrexate taken once a week. It can be taken in either Pill or Injection form.

Biologics are human engineered Proteins they eat away the other proteins like Pacman(Judy chuckles nom nom nom).

Biologics are TNF inhibitors used to help neutrolise Pain,Stiffness and inflammation.

Biologics are administered by Infusion  or injection at either an Infusion Centre or a hospital.

When first seeing a Rhematologist presenting with Swelling,Stiffness and pain a thorough Medical History would be looked at.

There are costs with Biologics but may be covered via Insurance,Medicare or Co pay support Programs ask your Rheumatologist about your options.

There are new Biologic treatments in Pill form being developed that are apparently different to anything currently being used and are specifically protein targeted.

Treatment is gradual meaning improvement can take time.

When RA is under control try low impact exercise such as Pilaties,Yoga and Swimming. Find something that works best for you be as active as you physically can be.

Document how you feel before and after treatment to tell Rheumatologist.

When it comes to Diet no study has proven specifically to help control Rheumatoid Arthritis. There has been no one common diet or Scientific Diet used to control RA.

Nutrition is discussed at Rheum Appointments but because Prednesilone can make sugar levels go up making it worse for Diabetes.

Experiment and do your own research for what could make you the Patient feel better however if taking suppliments Rheumatologist must also be informed(eg interactions).

With regards to Lab tests nothing is 100% positive or not for CCP and RF you could still have RA whether these blood tests come back negative.

Also Esp test and crp tests are the inflammatory markers and a Physical examination is also important.

It is important because persistant pain should be reported with warm and swollen Joints shown to Rheumy then a joint count can be performed.

GET INFORMED
BE ACTIVE
WORK WITH RHEUMATOLOGIST

Drive the boat because it’s a partnership.

Bring a family member or friend with you to your appointments if you can.

Education is the Key and be an informed Advocate.

For more information go to this website: Creaky Joint Discussions

Thanks for reading.