You have been through hell. Not sure where you live in PA but finding good doctors in an urban area like Chicago can be challenging but I have been lucky....it saved my life. I would not have survived past Dec 2005 without great care.
My wife and I always wanted to move to the mountains in the west and since I have been sick we realize how lucky we are to be in chicago (none of my beloved mountains or desert) but some of the best medical care in the world. We will probably stay the rest of our lives so I can get care if needed.
Do you have insurance that would allow you to go to a clinic to get a thorough analysis and treatment? With so many conditions doctors can get in each others way. I had a large team of docs, including 3 rheumys, who all worked together to diagnose and treat me. Now that I am better there are 4 docs who oversee my diseases and resulting conditions which I have not completely listed. I considered going to Mayos in Rochester, MN but got the care I needed here fortunately.
Keep pushing to find a doctor who can treat you and bring in any specialists needed.
So sorrry you are having such a difficult time...particularly with a family. Our "kids" are all middle aged men now so they have been asset in helping us through this crisis.
Keep on fighting your diseases. I do talk about my problems but always with a purpose to inform and help others. Otherwise, it is just another speed bump in my life and I will not let it stop me from living or returning to the activities I love. Maybe I won't get there but until I am sure of that I will stubbornly believe I can. 11 months ago the docs were not sure I would survive. I did. 12 months ago they were not sure I would walk or use my arms again. I did. Then they were not sure I would fully recover. I have not yet but I am so far ahead of any goal they would have set. Whatever the outcome my life is much better for not giving in to my early despair. Keep on trying.
I still want to return to skiing, climbing and golf in the 70s even though I have been sick and am 64. So far, I have only been able to climb part of a small mountain in MA. Might not seem like much but from fully quad to that in 10 months gives me much hope.
Sorry for rambling but I get somewhat emotional about things and trying to help others.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
Meds: prednisone (10mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller