I have struggled to find people with autoimmune diseases close to mine. we are under the same umbrella. my mother and sister have multiple sclerosis and I have non radiographic axial spondyloarthritis. Thank you for being here!! ❤

@ChronicallyMusical

Жыл бұрын

Thank YOU for being here! I'm always happy to connect with fellow spoonies!

@tracysmith245

Жыл бұрын

mines uv lighting and sunlight no one understands how i flare up when i see other people worse thing to say is wear a hat it still makes me very sick end up in bed zzz.

Talking about flares = IBD sexy talk LOL I've had crohns for 33 years and agree with you 100%, except now, I've had my rectum removed, so bleeding has gone away!

@ChronicallyMusical

3 жыл бұрын

Oh my goodness! Well I'm sorry you had to go through surgery but happy to hear you seem to be doing well sans-rectum!

Just got diagnosed with ulcerative colitis. Love your videos!!! Thanks for being so open and honest!❤️❤️❤️

@ChronicallyMusical

3 жыл бұрын

Hi Hannah! First of all, YOU GOT THIS. Welcome to the IBD club! I hope you are hanging in there. Please feel free to reach out should you have any questions about UC!

Thank you for the vid. Greetings from Germany.

@ChronicallyMusical

Жыл бұрын

Chilling it helps so much! With my most recent colonoscopy, I could only chill it for an hour or two and it was SO much worse. My second half of the prep had time to get properly cold and it really cut down on the nausea.

I have multiple sclerosis and I developed graves disease as a treatment sympton. I play the violin, by the way :)

@ChronicallyMusical

2 жыл бұрын

Oh gosh I'm so sorry to hear that, but I am happy to connect with another musician dealing with chronic illness!

gravy (great + groovy) video!

@ChronicallyMusical

3 жыл бұрын

Thanks Chloe!! I love being gravy!

@perplexed_hapax_144

3 жыл бұрын

@@ChronicallyMusical 😎👍

How did you get diagnosed with UCDT? I was told I have MCTD and I had never heard of it before. The rheum said I have SLE, Sjogrens, Antiphospholipid Syndrome and RA. What is the difference between UCTD and MCTD?

@ChronicallyMusical

Жыл бұрын

I had to seek out several rheumatologists before I was diagnosed. There was a specific connective tissue blood test we did that helped get some answers, but I still am not 100% confident if UCTD is the right diagnosis for me. There are so many subtle differences with these diseases, and new symptoms can present that can change the original diagnosis!

Yes there are other ways to say it - I’m on medical professional myself, and I never have to resort to using trashy language 👎not professional

@ChronicallyMusical

Ай бұрын

I guess it’s a good thing I’m not a medical professional!

Hi how are you my dear

@ChronicallyMusical

3 жыл бұрын

Great, thanks for asking!

Crap…. No alcohol 😢 or sweets.

@ChronicallyMusical

Жыл бұрын

It all depends on the person! Right now I'm able to tolerate small amounts of sugar and alcohol without worsening my symptoms or triggering anything - it really is a person-to-person and a disease-to-disease thing.