Happy day yesterday! Started out with a phone call from the rheumy I’ve been seeing cancelling my appointment today claiming that they were “not allowed” to see me because they don’t participate with my state insurance; I said I already knew that but that I had a family member paying a fee to them; she said well they called us and said we can’t see you at all…..sheesh! So as I’m sitting wondering what in the world I’m going to do I get a call from UConn Health and it’s the rheumatology office and they have a cancellation at 1 could I be there? I said yes and got myself together to trek over there (it’s an hour away).
Dr. Lacks (nickname, his is unpronounceable) asked if I would mind having a resident work with him, I said no problem. Dr. K (another unpronounceable name) did a full assessment, reviewed all the records I’ve been collecting, asked me questions from apple to zebra and did a physical exam more thorough than ANYONE has done since this all started in June. Not to mention she was empathetic and very gentle. She left the room and 5 minutes later the two of them came in.
Dr. Lacks did a physical exam and then started asking me questions about my past. Emotional traumas, physical traumas, stress levels, caregiver or receiver etc. My life has been full of all of them and I’ve always been the caregiver, he laughed and said “did I want to write the book about” fibromyalgia causes. That’s where my pain is from right now, not the PMR. He also said he is concerned that the PMR/GCA is not stable, I am to call him immediately if I ‘the headache’ returns or I become concerned about symptoms. I got teary eyed, he took my hand and asked if I was alright, I told him NO ONE had actually talked to me like he was since this all started. He said “I’m sorry; your care has not been what it should be”. HOLY COW a doctor who actually is going to take care of me?? He then explained about pred being the only treatment, that the moon face and weight gain should dissipate as I am able to taper down I now have a standing order for bloods every two weeks (which I can get drawn locally) after which I would receive a call about going down or staying put on the pred. A second order is for a liver panel monthly to make sure all is well. He will see me again in 3 months unless I need something sooner. No work, minimize stress, and do what I feel I can physically to keep myself going. Can I just say that when I got to my car I broke down and cried for 10 minutes with relief!!
I then had a fun evening with a group of ladies that I used to work with, hadn’t seen a couple of them in a long time and we had so much fun catching up. It was so nice to be with a group of people who "get it" about a chronic illness and just accepted me as I am now without making comments. So all in all what a great day!