The good, the bad and the ugly!

Since being diagnosed with SLE Lupus aged 12, I have had so many doctors come and go, some have been awesome, and others, not so much.

I remember one doctor would not listen to my symptoms. I had to do my own research about the illness, I was too young to understand it’s full affect, symptoms and medications. As I got older I started to understand SLE Lupus much more and what symptoms I had. When the doctor did his rounds, he wanted to diagnose me with severe heart issues, however I was certain it was my lungs. He was not listening to all of my symptoms, wanting to follow it text book style, he was not listening to me, and when I tried correcting him, he rudely stayed along the lines of “I’m the doctor, I will diagnose you with what I think is correct.” I was already feeling vulnerable, and cried when he snapped back at me. He did come later on and apologised in his “old-fashioned way.”

My current Rheumatologist, Dr Paul Healy is phenomenal. He became my doctor when I moved from Christchurch to Wellington. The first thing he asked was “What are your symptoms?” Emphasis on the Your. At first I thought he was nutty, but looking back on it now, he did not want to treat me ‘text book’ style. He Listened to my symptoms, what medication I should be taking, and what works best for me. We have had our ups and downs but I still respect him as a rheumatologist.

I have had loads of blood work. My veins unfortunately, got to the point of them having to use an ultrasound to find the veins and I now require a picc line to be put in during my hospital stays, as they realise there is no way they can use my veins as they are either used too often making them useless to use or my veins are too small. It sucks big time, but I am in talks to get a permanent line put in where blood can be tested and treatment through it

Recently I was admitted to hospital with Pneumonia. it was flu season here in NZ. I was so breathless and in a huge amount of pain. I was with Ivan, (My husband), when we went straight to E D, I have been told that if I have these symptoms to go straight to hospital. We went up to the Nurse to let her know what my symptoms were, straight away she told me to go to my GP who would “just treat me with antibiotics”, she didn’t give us a chance for us to tell her my health history, she didn’t even bother to look up my NHI number to look at my medical notes. I understand that there were so many people waiting to be seen, with a 5-6 hour wait. The funny story is that I went to see my GP the next morning, where she told me to go straight to the hospital. The night that I was admitted another nurse informed me that I needed another line inserted so they could give me another test that required that they put dye in the line. I tried to tell her how much of a problem it is for me to get a line put in, she asked if I was refusing to have another line put in, I told her yes because it’s like torture for me, she simply said by me refusing, she was going to document it in my notes.

I am sure I will have more experience within the health system. :)