Hi guys I wanted to come share my story with you x

[orchidcass77]

youtu.be/gbhcRHG5fn8(Not working as expected?)

[DRunnerchick]

Thank you for sharing. I'm sorry you've had to go through all of that. I hope you now can move forward and take your life back. RA is a cruel mistress and she often brings friends. Just remember that you know your body best, so work with your doctors by advocating for yourself.

[orchidcass77 in reply to DRunnerchick]

Thank you hun i like your analogy, it sure is cruel at times, I figured most people here have stories of a similar nature, it's different for everyone but it's a life changing disease for all. I hope that others can take some benefit from my experience, even if only to be glad that it hasn't affected their organs the way it has mine, I wouldn't wish this on anyone not even my worst enemy :/ I need some level of control over this disease now but the decisions are all difficult ones right now x

[DRunnerchick in reply to orchidcass77]

I am a single mom and I know all decisions are difficult, especially when your brain doesn't want to coordinate or cooperate with the effort. One of my first symptoms was paresthesia in my toes during my runs and anxiety where I just couldn't think straight. It took some time to be diagnosed since I am seronegative even after a thorough work up by my primary doc. When she couldn't figure it out, she referred me to a rheumy but I had to wait 5 months to get in. We all have a story to tell and I venture to say most of us have been misdiagnosed with something else along the way. AI is tricky to diagnose but doggone it, you would think doctors would figure it out quicker since treat early/aggressively is their protocol. Hang in there. I have noticed great improvement over time. It has taken about five months on my cocktail to bring me where I am now. I see glimpses of my former self but have to be careful to pace and keep on my treatment plan.

D🏃🏽‍♀️

[orchidcass77 in reply to DRunnerchick]

That's good to hear hun, I have had a few months that period where I was improving, it truly felt great and I regained some hope for the future. I hope your improvement continues for you. I wouldn't say being seropositive is a good thing as such but I've always felt sorry for seropositive patients it must suck to need a diagnosis and not get one, as you say the trick with ra is to treat aggressive and early. At least once I went anti CCP positive everyone started realising that I knew what I was talking about! Lol thank you for all your input hun and best of luck with keeping that regime working for you. Keep smiling xx

[Kai--]

Hope you don't mind my adding Part 2 ('Autoimmune me turns cRAzy! Part 2') of your inspirational story here, orchidcass:

m.youtube.com/watch?v=X0qjn...(Not working as expected?)

.

.

It, too, is wonderfully inspirational. 👍 🙏

Wishing you the very best, dear lady. 🙏 🌺 🍀 🌞

_______

Additional resources orchidcass notes in her story:

• Facebook: Rheumatoid Arthritis - Interstitial Lung Disease: facebook.com/rheumatoid.lung/

• Google+ : Cassie “MammaCass” Bird: plus.google.com/11282318658...

• YouTube videos: Cassie Bird: m.youtube.com/channel/UCGoG...

[orchidcass77 in reply to Kai--]

Thank you hun i had meant to add the second part but I forget what in doing half way through doing it all the time lol. Thanks x

[Kai-- in reply to orchidcass77]

Just heard about Buteyko breathing, orchidcass, if that's something you're ever curious about (if not already aware of):

Buteyko Breathing?: healthunlocked.com/blf/post...

[Interesting stuff!! 🤔 🤗 ]

Don't know if/ how applicable it could be for ILD, other lung ailments, autoimmune illnesses, etc. but maybe worth exploring? 🕵 👍

______

Supplemental info:

Buteyko 'Search Results' from:

👃 💨 HU forums: British Lung Foundation (BLF); Asthma UK community forum; Breathtakers (Obliterative Bronchiolitis); SILA (Sarcoidosis); USAsthma; Thyroid UK; Anxiety Support; AF Association (Atrial Fibrillation); Parkinson's Movement; Quit Support (Roy Castle Lung Cancer Foundation); Sudden Cardiac Arrest & Heart Attack; NRAS (National Rheumatoid Arthritis Society); Diabetes India; Sticky-Blood – Hughes Syndrome Support; Couch to 5K; IBS Network (Irritable Bowel Syndrome); Headway (Brain Injury): healthunlocked.com/search/b...

👃 💨 Google: google.ca/search?as_q=&as_e... (Under 'VIDEOS' there are lots of samples.)

[orchidcass77 in reply to Kai--]

Interesting stuff kai thanks for getting me the links

[Kai-- in reply to orchidcass77]

👍 🙏

If you hear of any ILDers (or others) implementing Buteyko -- over time -- orchidcass, I'd love to learn of their experience. 🤗 👍

I understand so much of our experience is subjective -- difficult (or impossible) to measure to 'scientific satisfaction'. 😳 🙃 😂

Yet, improving our QoL (Quality of Life) -- however (subjectively) small or great -- is a much appreciated blessing. 😃

🙏 🌺 🍀 🌞