Back in the game but let down by Health care

So I did international travel in October/November. Upon coming home I actually did not have a big weigh gain which normally would have happened eating out at restaurants daily. I got referrals to a rheumatologist, so I called and made an appointment for April. Long wait but after not getting any need for help sooner from my clinic, I was happy. I worked December/January as a seasonal cashier. Most people use credit cards which I could do but very hard to give change and by mid January it took a toll. I had a harder time walking, harder time eating (jaw not open well and pain chewing) and my hands got extremely twisted and locked. My husband frequently need to dress and undress me, even with aid tools it was near impossible to open food packaging (cans, zip open bags, frozen food boxes). Then the doctors office called and moved my appointment to May due to travel my doctor was doing. Finally in May I saw the rheumatologist. I had X-rays of my hand post a car accident and it showed no bone damage ( which blows the rheumatoid arthritis diagnosis that I took remicaid/methotrexate for). She agreed that my symptoms had changed drastically. Also my skin has thickened and gets strange “chicken pox” blisters that take a long time to heal. I now get GI pains. She talk about getting me into a study. Blood work was needed. It took the clinic and specialist weeks to coordinate getting blood work orders in place. Last week had several false states as I stayed fasting nearly all week and finally got lab work done. Tomorrow I will be in contact with doctors to find out what happens next. Why my grrrr attitude? Can I watch what I eat? No last night I ate 4 potions of frozen prawns as it was the healthiest thing I could prepare and I had to eat with my hands which was a struggle. Can I exercise? I couldn’t even hold barbells now. I daily walk, but recent I have started to feel unsafe to do this. My balance if getting less stable and the pain scares me that I might not be able to get home. I have no one watching out for my whole picture. I totally expect to be given a script and left to deal on my own. I have risen to 208, a rise of about 20 lbs. I am lost how I can stop the trend. I already pushed once and ruptured a tendon. It is getting harder and harder to not spend the majority of my day in low activity. No clue what else I should do. I feel I don’t fit neatly into a label. So doctor is labeling me Lupus but I have no confidence in the new label nor drugs that will be given to me. I still haven’t been able to address my biggest issue pain. Guess the future of medicine is ok with letting people suffer. Or at least another four months to get another appointment.