Life with Chronic Illness

I had my endocrine and rheumatology follow up appointments last week. I was scheduled to see endocrine anyway, but the rheumatology appointment ended up happening a few weeks earlier than I was scheduled to see them. 
My endocrinologist was stumped about all that had gone on at the hospital - so many tests and such severe symptoms that it seemed impossible that they found nothing that would explain what was going on.  My hemolysis seemed to get a lot worse while I was off dapsone, my hemoglobin dropping below 10.  Because of all this, she thought it was reasonable to stop the dapsone all together, as it may be a cause of the symptoms I have had, but wanted me to check with rheumatology first to see if they agreed.  I also had labs to check that my ACTH came down, and my electrolytes were normal.  
I emailed my rheumatologist to see if he thought it was okay to stop the dapsone, and he asked me to come in the next day to discuss options.  Immediately I knew I didn't have a lot of o…

I was discharged from MGH on January 21st, after I had the cardio-pulmonary exercise testing with the right heart catheterization.  We still don't know exactly what is causing the shortness of breath, tachycardia, and hypoxia.

The cardiac catheterization part of the test I had Tuesday was so easy. No anesthesia, just some local lidocaine to numb my neck, where they would put the catheter in.  I was really nervous, but one of the nurses stood right next to my head, and instructed me on when not to move, and when to hold my breath.  When I had my IPSS, they had a lot of trouble getting through one of my jugular veins, because it had never fully formed.  They made note of that and went on the other side. They had it positioned through my heart and into my pulmonary artery in about 20 minutes.  Then, the hard part started.  I had to sit up, get in a wheelchair, and be wheeled to the pulmonary lab all while this big contraption is sticking out of my neck.  Usually, if you were laying …