# 4

Sep: Still unwell. Good days, bad days, really shit days and "high" days. Frustration at the lack of a response or the lack of treatment felt muchly. Other factors contribute to stress levels, but my first and most important focus needs to be my health.

Fri 9th. Went to see the GP. Shortness of breath, and pain in abdomen. Felt more when taking sharp intakes of breath. GP suspected spreading of disease, couldn't at first hear my left lung. Said it was possible inflammation of the lung which happens with lupus and prescribed a dose of steroids. Said as the GP had the month before that I need to start taking treatment soon (I know this!) More blood tests Mon 12th. Steroids helped. Specialist called back finally Wed, and left a message, to say he would call back. Got home to find a letter. He wanted more details of the sulphur allergy. No alternative medication mentioned. Fri 16th, Specialist called again. We talked about my allergy, he told me about alternative medication one which is harder to get. Both with worse side effects then the one he'd prescribed (bearing in mind, this is something I'll need to take daily for the rest of my life) I tell him I'm going to SA to see a specialist there (10 weeks to wait for treatment is a joke) and mention breathing issues, and GPs thought it could be spreading or just be inflammation. Specialist called back and told me to come into the hospital where he is. He was worried the breathing issues could be linked to pleurisy or blood clots on my lung which would mean I couldn't fly and which happens with young woman with lupus. CAT SCAN, Chest X RAY, Blood tests, and an ECG done. Left hospital at 8, still waiting on results for lungs and heart. Brother got a response on his query for me to lupus uk foundation on some kind of clarification/alternative/anything. They wanted more information.

I celebrated my 32nd birthday yesterday, happy that I could be home and not in hospital getting more tests done. Thankfully the test results were all fine, and the new symptoms are most likely linked to inflammation. I have a follow up this coming week with the specialist and can still fly to SA soon to see a specialist there, and hopefully get the damn treatment already!