I have had some amazing doctors through the years. Who could blame them? The last few years I have been even more exceptional than my typical special. We all know this. It was inevitable with the way my lupus has played out. (And did you notice how I casually dropped the truth bomb of having both a psychologist and a psychiatrist last week?! I got some mad skills!) It all began in December of 2013 and is only now beginning to calm down. I cannot and will not say anything that is untrue. You will soon hear the truths that I have recently heard and take the first steps with me of my new journey.

Meanwhile, at the doctors…

When Connor Left

You may recall that I initially began with Connor in Fremantle Hospital. Briefly after that it was decided that I started to be seen by a specialised team at Royal Perth Hospital (RPH). The  team at RPH was made of two Head of Departments. In the past I have referred to them as the Two Leos. As well as these two, there were two more immunologists, one neurologist and two neuroimmunologists, one of whom was Connor. He was specialising in both at the same time which is apparently very hard and very special. I get the impression that it was through his work with me, as well as a few other likewise special cases, that he was head hunted by the Mayo Clinic in the US. Connor left at the start of last year and it kind of broke my heart. Not that I was in love with him, more that he was an important part of my illnesses progress.

Throughout the years

I suppose you could call me a regular. At RPH, my appointments with this team occurred roughly every 8-12 weeks. The MRI scans and tests were performed with the same regularity. As the treatments worked, or didn’t work, I was hospitalised about as regularly, but mostly at FSH. I gained a bit of a ‘following’ at this place too with a similarly mixed basket of emergency, immunology and neurology doctors attending to me. That is two hospitals with two separate teams of specialists(!).  Inevitably, though, I always found myself back at RPH with Connor, the Two Leos, and a mixture of Neuroimmunology specialists, or interns, I didn’t mind. I got used to these doctors coming and going.

Last year things began to change

For the two most recent years, my appointments have become further apart. To the point that I have one appointment every six months. You would think this is wonderful, right? Given the nature of my health (you know, that whole ‘head thing’) and how long this has all been going on, I do not remember what life was like prior to this stuff beginning. Sure, I know facts and details, places and people, and even some memories are coming back now clearly. I was scared. The one reliable thing that existed in my life, the hospital and the visits there in any capacity, was not there anymore. I am not saying I missed the attention. Just that I missed the routine and knowing how to exists in this life. I was an adult, who could walk and talk. I looked healthy enough and had relationships and support structures. There was somewhere for me to go and something to do. But what was I? Who was I without this?

In the new doctor’s office

There was so much time spent crying. Clearly, it was me doing the crying not the doctor. And the reason felt so selfish, and immature and … terrible. But I found myself wishing I had another brain lesion, so things could return to what I knew. I wanted to be sick because that had become my comfort zone. I was afraid to live without a lesion. And I hated myself for it. In the new doctor’s rooms, we talked about that. About how I felt as though I had no one to share this with. The only people I felt safe enough to talk to were people that had been scarred from the ordeal as me. These people needed their own time to recover. The doctors began to pool their resources and came to a decision which would lead to the eventual farewell of quite a few doctors.

What discussion could have that much impact?

My new doctor decided one day that she had had enough. Ultimately three doctors separately agreed the mysterious reason for my spontaneous trips to the emergency room lately needed to be addressed. I turned to my first GP, Dr Evs. She decided that I would see the dermatologist for ‘the skin thing’ and an immunologist for the anaphylaxis (more on that later!). As we began talking about the allergy, we didn’t need to think too hard, because I already knew an immunologist. An appointment was scheduled with Immunologist Leo for two days after Christmas.

Two days after Christmas at the Doctors

It was strange going to see a Leo behind the others’ back. Of course, it wasn’t really that big of a ploy. Well, it sure felt like it, but still… On speaking to Dr Leo about my anaphylaxis, we also had a general discussion about the overall ‘goings on’ of my Systemic Lupus Erythematosus and my Lupus Cerebritis. Leo felt I was appropriately in control of the neurological side of things. He felt I was so appropriately in control that I did not need to continue seeing the neurology or neuroimmunology departments any more. This change would remove me from Neuroimmunology to the Immunology Department alone! And so, just like that I lost yet another of the most important person (or groups of people) from my life.