I started a blog

[SheriFrost]

I started a blog a few weeks ago so I could begin to articulate how crazy mixed connective tissue disease is. Please visit and give me your input. the address is mixedconnectivedisease.blogspot.com

[KFScleroderma]

It's a good start! I think it leaves the reader wanting to know a little bit more about you personally... which is good, but maybe a place on there for a personal profile?? Good luck with the blog!

[SheriFrost in reply to KFScleroderma]

Good input. I've been struggling with how much I actually write. I hate to feel like I'm complaining. I'll update it though. How are you doing with Scleroderma? I'm starting to get sores on my fingers, face and scalp that are really icky. Any homeopathic suggestions?

[KathleenMary]

I too have Mixed connective tissue disorder with secondary raynauds- i was originally diagnosed with Rheumatoid arthritis. Luckily I seem to be doing ok with hydroxychloroquin for now and just have a few aches and pains but these could be osteo?>?

Last winter was a real trial - lets hope we don't have so much cold weather this year.

[SheriFrost in reply to KathleenMary]

Hi Kathleen Mary, A couple weeks ago I realized I was having Raynauds - nose is ice cold out of the blue and turns bright red, then white and hurts like crazy when it warms. My hands have been doing the red, white, blue thing for years but I never put two and two together. I'm on plaquenil too but have to call Monday for a switch. IN the last two weeks I break out in itchy hives everytime I take it. Ther has to be something else. Least I hope so. HOw are you doing with all the weather changes? That seems to make me flair.

[zenabb]

The confusion is due to the fact that there is not enough information for us and for doctors. There are not enough of us to get the drug firms interested in investing into research into Raynaud and Scoleroderma (not enough money). So it is left to the RSA to raise funds and it is very hard. THERE IS NOT ENOUGH RESEARCH INTO OUR CONDITION. I have tried to fundraise but people are not interested except for things like heart and cancer research. Anne Maudsley of the RSA has the same condition as us, yet she is trying to fundraise and does fantastic thinks towards it. I don't know how she does it. Some doctors and nurses try as well. There is some research but not enough by a long chalk to remove the confusion on our condition. I don't know if this helps but it explains the confusion somehow.