Just found out I Have MCTD wish I knew more about this

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It started with a rash on my legs went to see Dr he said it was nothing. Started to spread to my stomach went to ER they said it looked like lupus or an infection in the body gave me steroids. They told me to tell my daughter to do tests of everything. The Steroids took the rash away but once the month was over it came back. They told me to see the Dr I told the Dr to do tests of everything he didn’t want to gave me steroids again. The rash kept coming back month after month I went back to the Drs office and had to cry and tell him I was tired of the rash and not knowing what was wrong with me he sent me to a Dermatologist but here in El Paso Tx Medicaid for adults don’t cover dermatologist so I had to see another dr that dr gave me an ointment and an allergy test came out I had allergies so the original dr sent me to an allergy specialist there they thought a piece of my skin of the rash and did blood work and came out I had something so they sent me to the rheumatologist and they said I have MCTD they think it’s in the muscles they aren’t sure they prescribe a medicine that will help with the rash but I looked into the medicine and you may have hair loss and as every medicine it affects your liver kidneys decided not to take it the dr says if I don’t take it. The MCTD can spread in other parts of the body. Don’t know what to do. I’m new to this. Thought about trying Irish Seamoss. Also I read that eventually MCTD will kill you but yet they Dr says it’s not a disability for Social Security.