Long years for answers

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I didn't really begin to have serious trouble with my health until I was 46.  I have always been physically active, exercised and believed myself to be healthy.  I had an incident with coughing up blood in my early thirties but attibuted that to working long hours, going to school at night, and smoking cigarettes (stupid me).  I quit smoking after a lung bronchoscopy showed a large weeping sore in my left lung and things wents back to normal.  I found out I had a clotting disorder  (Protein S Deficiency) when I was 46 and had several pulmonary emobolisms and leg clots.  I was put on oxygen and was out of work for ten months.  I also had a major surgery during that time unrelated to the clotting disorder.  I started getting severe itchy rashes on my chest, back and upper arms which was attibuted to "allergies"  I started walking every day and and managed to discontinue the oxygen therapy even though I was diagnosed with pulmonary pneumonitis and fibrosis after an open lung biopsy.  I joined a gym and became very fit.   I retired in 2009 and had two very active years with outdoor sports and riding horses.  I got a job working in the library part time (a dream job for me!).  I started to feel very ill while just standing and not doing much at all.  Somehow I managed to get through working my days at the library but wasn't able to do much at all on my days off.  I just slept through them.  I started having trouble walking any distances without becoming fatigued and had extreme exhaustion without doing very much.  I went back on oxygen therapy during sleep. I started feeling very ill and felt as though my limbs were filled with concrete and I was trying to walk through thick mud.  I had had incidents of pneumonia and thought that is why I felt so bad.  I had periods where I felt so cold that all I could do was shiver and lie down until I went to sleep so that the feeling would go away.  I saw several doctors during this time and was hospitalized for low blood pressure and pneumonia.  No one had any answers for me.   I was diagnosed with Sjogren's Syndrome in 2013 due to very dry mouth and eyes.  I contracted Shingles in April of 2015, was very sick with that.  I started to lose large amounts of weight after that, almost 80 pounds in four months.  I was finally diagnosed with Polymyositis and RA in September of 2015 which was then changed to Dermatomyositis due to the rashes I was still experiencing.  I have been on Plaquenil, Cell Cept and Civemeline since that time and started Rituxan infusions in April of 2016.  I still am very weak and fatigued at times but am trying to exercise and be as healthy as I am able.  I refuse to let this disease take over my life.