Hi. I'm Marjori, new girl on the forum.
I've been diagnosed with Systemic form of Scleroderma for 11 years. Most of my organs have been involved at one time or another. My GI tract is pretty much paralyzed, so my nutrition/diet is mostly in the form of a liquid called Osmolite. It has minerals and vitamins that sustain me. I add herbal decaf teas, healthy broths and I have a system that I call C and S. For those of you who want to understand this, it stands for chew and spit. Sounds gross, but allows me to taste such things as fruits and other goodies. I don't do this in restaurants!
My rheumatologist is my main guy, but I have about 8 specialists related to specific organs. I was told I would live for 5 years, but 11 have passed. Told that doctor not to give people negative, unnecssary or "old belief" system feedback.
I believe in miracles.
I'm very involved in research online. It's helpful to our doctors at times, to be brought up to date. I write questions before each of my doctor appointments. I always end the appointment with 1) question whether this doctor would like to add anything new to my 6-week standing labwork 2) are there any tests such as MRI's, X-rays, etc. that I need at this time
I have a very friendly yet, professional relationship with my specialists. I appreciate their support, although there are times when old doctors need to be replaced with new doctors.
Looking forward to the forum and to new friendships. We can help one another.
Blessings, peace and Love. Marjori